Supporters of Amanda

I am nobody! Who are you?

2011-11-06T16:36:00.000-08:00

We are moving on from many things right now. We are moving out of our home at the end of the month. If all goes well we will be living about 5 miles down the road by Christmas. Amanda will be moving out of her gifted and talented program. She has done an amazing job considering her many challenges to keeping up. But it is time to have my children in the same school. We are moving on from fewer medical appointments. Amanda was invited to participate in group therapy for medically involved kids. It felt strange to be back to Primary's after a long 2 month stretch since my last visit. And best of all, we are moving on from cancer. For the first time in three years I can say, I have my daughter back. She looks and acts like herself again. She is happy. She is full of energy. She wants to play. She enjoys every moment that affords her the chance to live life. The remnants of chemotherapy are fading. Her strength is coming back, her coloring is back, the swelling on her face has gone down, she whines less, she laughs more. I can still tell that she is not 100%. But every day we get closer. Compared to her health even two months ago, she has healed so much. I am humbled with tremendous gratitude for the gift of her life that has been granted back to me. We are getting involved in Hope Kids, Make a Wish (still waiting to have her wish granted), Leukemia and Lymphoma Society, and anything else that helps provide a purpose for her and connects her to her cancer in a more positive way. We ventured to Las Vegas last a few weeks ago and had a really good time. It is so nice to be able to get out again.This picture was taken on Labor Day. Compare this to the picture below and notice how much Amanda has grown and how much her face has slimmed down from being off steroids.
This picture shows off a lot of hard work to transform Amanda into Emily Dickinson for her"Images of Greatness" school project. I think she chose Dickinson because she read one of her poems last year and she was really able to relate to Dickinson. The poem is an expression of how she felt about the loneliness and isolation of chemotherapy treatment.

I'm nobody! Who are you?
Are you nobody, too?
Then there's a pair of us — don't tell!
They'd banish us, you know.

How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog!

-Emily Dickinson

Moving On

2011-09-04T17:56:00.000-07:00

-Celebrating the end of Chemo with the ward primary. They decorated the house and gave her gifts. As you can see by the smile, it was very much appreciated.

If you haven't noticed, my blogging is getting fewer and farther between. I do believe it's part of moving on from cancer. Amanda ran a fever several days ago. I called oncology since she's still is immune compromised (should improve in about 1-4 more months). I was told to treat her like a normal kid. It brought a smile to my face to hear those words and a feeling that I cannot describe. I cannot put into words how wonderful it feels to finally be here. And yet, I'm very exhausted and emotionally worn out. It's a strange mixture of thoughts and emotions that I find myself sorting through. I do believe that what she has gone through has served a purpose in her life and will shape the future of our family. I've never understood how people can be grateful for their trials. I still struggle to grasp this. But I can say I'm grateful for what I have learned and am still learning. I know that Amanda has a purpose in her life and that is why she is still here.

I commented to Scott at dinner tonight that Amanda's cheeks haven't been that rosey in three years. I hear more laughter than whining from her. She plays more with her siblings. She is eager and happy to be at school once again. She's growing up tall very quickly. She looks so much healthier and has more energy. Seeing my daughter emerge back to herself is giving me a lot of hope for her future. She is in the 95% cure rate. Her remission needs to last 5 years to be considered cured. I believe she will get there.

I've really wondered whether to keep writing or end this blog. It seems rather blunt to end as soon as chemo is done. There is a brighter side to Leukemia, and I think I need to showcase that for a while. I will at least keep it updated until Amanda has her Make A Wish granted. She has qualified and received her special key to the wishing room to go make her wish. We are just waiting for her turn. She is very excited. I don't know what she wants, but I'm sure it will have something to do with Perry the Platypus, her favorite cartoon character.

Time For Relay

2011-07-29T11:49:00.000-07:00

Time flew by quickly. Its time again for Relay For Life. Tonight we meet at Barnes Park to take part in the Central Davis Relay For Life. It will start at 6 pm with a victory lap by cancer survivors. Then from there our team will keep someone on the track until noon the Saturday. I hope we are all up to this. Amanda is definitely excited. She remember how special she felt last year walking the track with the other survivors as well as how much fun she had with everyone with all the activities that were going on.

I want to thank everyone that made it to the Supporters of Amanda Swim Party we had last Friday. We had a great turnout and a wonderful amount of donations. All the spare change sure added up. I took the bucket in to the credit union this morning to use their change machine and we had a total of $248.86 donated just from the swim party. We are very grateful to all those who donated. Every penny donated is going to a great cause with the American Cancer Society. I added the amount to our team's donations that you can see at our Relay For Life page here.

Also, I got some great video of the swim party at the wave pool and posted it on YouTube for everyone to see. I'm sure some of you didn't want yourself posted on YouTube in your swim suit. Sorry. Click here.

OK, its not really our swim party. Thank goodness we didn't have that kind of turnout. I get claustrophobic just watching that. Our turnout was excellent. Amanda was about the first one in the water and one of the last ones to come out. She had a great time being surrounded by so many people that have shown love and support to her during the last couple of years and we couldn't have asked for a better turnout.

I don't have Mary Ann's camera so I will have to post some actual pictures from the swim party and Relay later this weekend. Thank you again to all those who came, to those that donated, and those taking part in the Relay tonight. If you are not signed up to walk, please come on by and cheer on our team. We hope to see you there.

You're Invited

2011-07-15T18:54:00.000-07:00

To all the Supporters of Amanda over the years, please accept our invitation to celebrate her completing her chemotherapy. Bring your friends and family and help us celebrate. Details are below, just click on the play button. We hope to see you there.

Make your own digital invitation

FINISHED!!!

2011-07-10T18:51:00.000-07:00

AMANDA IS FINISHED WITH CHEMOTHERAPY!!!!!!!!!!!!!!!!!!!!!!!!!!!

The final pills have been taken. And now that she's been chemo-free for 10 days there's a little bit more color to her lips, a little bit more energy to her step, and a little bit more joy in her overall demeanor. She is slowly feeling better. We went on a family outing on a Saturday for the first time in over 2 1/2 years. It was so wonderful to get out rather than sitting at home passing time on the chemo clock. Overall, she is happier. There are the occasional moments of sadness for leaving behind what is familiar. But seeing glimpses of herself slowly come back brings a happiness to me I cannot describe. As her parents we are starting to feel a large weight being lifted off our shoulders emotionally, financially, and physically. At is hard to describe. It really hasn't set in yet completely. But we can easily say we are so excited to finally be here!

I have decided to keep this blog open for a few more months. We are still in a critical time for her, as the first 3 months are the riskiest for cancer returning. I do not believe it will, and her doctors don't either. But after two years of blogging about sadness and hardships, it will be a welcome relief to record some of the more joyful events of her life. We are waiting to hear back from Make A Wish. Now that she can actually leave the house without fear of chemo migraines we'll start getting into some activities for cancer kids, and we are eager to celebrate a big party for her on the 22nd (I'll post more info in a few days)

On a different subject I want to offer an explanation as to why our house is for sale. Despite loving our home and neighbors very much, I can't deny the feeling that we need to be somewhere else and that Amanda needs to start over. A new season of our life is starting and moving feels like the right step for us. We appreciate the support and understanding that we've been receiving with this decision as we have no intention of turning our backs on the people that have loved and supported us through our trials. We will forever be grateful to those that have seen us through our darker days.

Last Treatment

2011-06-25T12:37:00.001-07:00

It is so hard to believe, but we are here. Her last outpatient treatment. She finished it on June 15th and took her last steroid pills on the 19th. Her very last chemotherapy pill will be taken on June 30th. It is earlier than we expected. And the beautiful irony is that the 30th is Scott's birthday and the last day of our Cobra insurance. We could not have timed it better if we had tried. I no longer believe in coincidence, rather, blessings.
Amanda went into her treatment with great hesitation. As I said before, she is not ready to have it end because she is comfortable with what is familiar. But the staff at Primary's made such a big deal and celebrated with her to the point that she quickly forgot about her concerns. She was showered with gifts and praise. It made her day. The quilt she received is just beautiful. So much effort went into making it. I wish the seamstress could have seen the joy it brought her. It made this last treatment round much easier than the others. I am so relieved to be done with roid rage. I eagerly got rid of the piles of medical equipment at my home and bid farewell to home health and IV pumps. We go in on the 27th to have her port removed. It really hasn't set in yet. I find myself reserving my excitement until we are really done and I can see my daughter return to her energetic self again. It will take time. Her immune system is really low right now. It will take anywhere from 6 to 12 months for her immune system to return to normal. We still have to seek immediate medical attention if she runs a fever. And she has follow-up appointments every month for the first year. It is all still so overwhelming to take in, but for the first time, it's a good overwhelming.

Credit must be given where credit is due. Congrats to Nessie the dinosaur for enduring over two years of chemo treatments, ID badges, and excessive loving. notice all the "love spots" (as Amanda refers to them as) where her fur has rubbed off. Nessie has been by Amanda's side exclusively throughout treatment. The staff knew this little animal by name and treated her like a patient. During Amanda's toughest recoveries we made up stories about Nessie and wrote them down in a book. I'm sure it is something she will cherish someday. It's funny, but Nessie kind of has a spirit of her own. She's part of the family. I'm so grateful for the comfort she provided my daughter.

Leukemia Treatment

2011-06-15T06:21:00.001-07:00

Have you ever jumped into a cold pool before? There is that initial shock and discomfort. But slowly, the cold water feels warmer and more comfortable. You adjust. And before you know it, it's time to get out. It doesn't take long to realize that getting out will be cold and uncomfortable just like getting in was. Which is strange because being outside the pool used to once be warm and familiar. Amanda goes in for her last chemotherapy treatment today. She is reluctant to leave the pool. She's been in for a long time now.

Getting There

2011-05-23T15:35:00.000-07:00

I just scheduled Amanda's surgery to have her port removed at the end of June. There is a sense of disbelief that we are finally getting there. She has her last lumbar puncture on June 15th. She does have to go in for an MRI next month. Her last treatment proved to be more painful than usual. She's again off her steroids right now (much to my relief) and will go in to determine if the drug is causing joint damage. Only six weeks left of treatment. Yeah!!!

If you ask Amanda how she feels about all of this, she will let you know that she is not excited. She cries about missing her treatments, missing the hospital, missing the life she now knows. According to the experts, this is pretty normal. There will be some adjusting for all of us. She had her old friend stop by. It helped rekindle her spark for social interaction with friends. It will take a lot more interaction like this to get her feeling comfortable again with the world outside of chemo, family, and video games. It will take some time, but I think for the most part she will adjust. She's already proven herself pretty resilient.
As for myself, I cannot look at life the same way. For example, her cousin's friend was just diagnosed with liver cancer. I painfully understand what those parents are going through. I can't ignore it and am deeply saddened each time I hear of other children beginning treatment. But, I do know that there is great purpose in what pediatric cancer patients go through. They were not randomly selected to endure this. God knows that they are very strong souls.

On a less dramatic note, part of our moving on process is to participate in Relay for Life (as you can see the details below) and to have a very big party to celebrate the end of chemotherapy. We'll post more details later. Amanda has already made it known that swimming is order.

Erin and her great fashion sense. She calls her ringlets "slinkys." When she's in a good mood, she's my comic relief to all of this.

Will is doing great. The new medication to help him gain weight is working great. He gained so much last month that his doctors were shocked. All the months of running tests and exams have ruled out any genetic or metabolic problems other than the blood clotting disorder. He's eating and tolerating just about everything now. His physicians finally agreed that his digestive track was delayed from the blood clot he was born with, and that his liver just wasn't producing enough growth hormones from his inability to eat enough. I think we are over the bad cycle this caused. It is such a relief to have one less medical problem in our household.

Time To Get Ready For Relay!

2011-05-09T19:16:00.000-07:00

Relay for Life is coming up again and Team Supporters of Amanda is getting ready to walk all night long. Put July 29th and 30th on the calendar and help us support the American Cancer Society with this fundraiser.

Last year we decided to take part in the Central Davis Relay for Life and we ended up having a lot of fun while raising a lot of money for the American Cancer Society. We've been touched by all the ways people have given, supported, donated, and even dedicated their lives to those who have been affected by cancer. We felt we needed to start doing a little something to give back and had some fun doing it so we are back at it again.

If you missed it last year, here is a run down. Teams are setup and walk from 6 p.m. Friday night until noon the next day. At least one person on the team is on the track at all time. Throughout the night there are times we celebrate, remember, and fight back. It made for a great time last year and the kids sure had fun. If you are interested in joining our team or helping our team make our donation goal, you can do it online at the link below. Or if you have any questions please feel free to contact us.

2011 Supporters of Amanda Relay for Life

Be a Supporter of Amanda and join the team or make a donation.

2011-04-19T20:24:00.000-07:00

"Blackbird singing in the dead of night. Take these broken wings and learn to fly....You were only waiting for this moment to be free." -The Beatles

These lyrics popped into my head today and I had to fight back some tears. To the doctors, Amanda is handling her chemo well and in that coveted 95% cure rate. To those that visit with her they see a happy little girl eager to talk and play. To her parents she is a lonely and isolated child. And as parents, you can't help feel sorry for a child that has already gone through so much. We were warned that the transition from chemo to remission is very difficult to cope with. As we are approaching the end, we are starting to understand this caution; How do you rekindle friendships for a child after two years of isolation? How do you tell a child that it will be alright when she sits alone at recess? How do you remove that stigma of being the "sick kid"? How do you adjust from the constant attention and care that has become the norm?
-Broken wings just have to learn how to fly again.

Home again

2011-04-01T11:26:00.000-07:00

All these medical problems are wearing us out!!!

I'm a bit slow in updating the health status of my kids- its been a bit crazy lately! Will was released from the hospital on March 25th. He was hospitalized for 8 days with some nasty GI bug. The doctors said because of his failure to thrive and being born growth restricted he struggled to bounce back more than the average kid. The poor thing could hardly keep anything down for a week. He dropped to 17 pounds at 19 months of age. His little arms looked like toothpicks. But since being home he's been an eating machine. It's as if all the vomiting hit a reset button on his gut. He's more than gained back what he lost. He looks great and is acting like nothing happened. The doctors still can't explain what's causing his failure to thrive beyond acid reflux and his liver producing too little growth hormones. They even ran some metabolic tests while we were there. His gut is just delayed and is taking it's own time to catch up to his age. He seems to be tolerating everything I feed him without any restrictions. It's very reassuring to see so much progress in such a short period of time. I hope it continues. As for how the parents are doing, I measure my stress level based on my Diet Coke consumption. Let's just say I highly recommend investing in Coca-Cola stock!

Oh yeah, Amanda. The person that this blog is really supposed to be about. I supposed I should have renamed this blog to include Will's name a long time ago since he's had so many medical struggles alongside Amanda. Fortunately she is more than willing to share the attention. Amanda had an LP and outpatient chemo two days ago. She is back on the steroids (ughhhhh). Actually, I am happy for it and will take the terrible side-effects. Her MRI results came back showing some damage to her shoulder joint, but in weighing out the pros and cons of continued use of the steroids that caused it, fighting cancer wins over some minimal joint damage. The break from the steroids last month came as a relief to all of us. She is having a much better recovery this round because of it.Steroids and an LP - even popcorn wont's get her to smile

I should point out that after she recovers from this round, we have only 3 more to go. Her last day of chemotherapy is July 8. Until then it's 122 more steroid pills, 22 more days of roid rage, 3 more IV doses of vincristine, one more lumbar puncture, 4 more days of IV fluids at home, 117 more methotrexate pills, 127 6-mp pills, and a whole lot of popcorn. I am reserving my excitement as we are not there yet. For several years my life has centered on taking care of medical problems. It is going to be a big adjustment.

Sweet Painful Memories / When does it end?

2011-03-23T21:24:00.000-07:00

A post from the dad...

It seems to be the theme for the last couple of entries but it is how things seem to be going in our lives right now. As soon as we see things getting better and getting closer to normalcy we encounter another trial that tests our family. We are getting so excited about seeing the end of treatment for Amanda later this year. Its been almost 2 years since her diagnosis and we've been through a lot during that time. But we are not out of the woods yet.

As much as we try to keep away from illnesses and keep things sterile, somehow something manages to make its way into our lives. After a fun day of playing with his sisters last Thursday, Will finished the night off with vomiting and ended up vomiting every 15 minutes for about 12 hours until we ended up at the ER at Primary's. He slowed down when he was on the IV's and zofran. Unfortunately, we are heading to day 7 of being down at PCMC with him and not sure when he will be ready to come home. Without going into all the deatils there are a couple of things I would like to share.

Memories -
Having Will admitted this last week had moments of "yah, yah, we know where things are. Been here, done it already." We are familiar with staff and basic procedures at PCMC and it seems routine at times. We recognize faces and know our way around about every floor and department. However, when we were moved up to the 3rd floor some memories of two years ago came rushing back. Amanda was moved to the third floor while the doctors were still trying to figure out what was wrong with her. The 3rd floor is where we found out she had cancer. The 3rd floor meditation room is where we tearfully offered up many prayers and where we told our parents that a doctor predicted Will's likely failure to make it to full term. After being moved to the new room on the 3rd floor it didn't take long to remember the exact room Amanda was in just down the hall.

With all of these things so much in front of us our attitudes have been holding up pretty well. That is until tonight. Will seemed to be starting to do better today and acting more himself during the day. After being off the IV for a couple of hours he was back to throwing up and loose bowels is an understatement. When I got home I found Erin already in bed and with a fever and cough. When you are trying to keep the illnesses away from your immune-compromised child it is stressful when your other two children are going through some big illnesses. We don't go very many places. We don't have a lot of visitors, etc, but it still managed to creep in somehow.

Amanda is the example once again.
I have said it before and will probably say it many more times. I am amazed at how well Amanda understands things I wouldn't expect a 10 year old to understand. She has been through things most kids don't even have an idea about. When I talked to Amanda about what Will is going through down at the hospital I can tell she gets it because she's experienced it all herself. She gets the IV's, the zofran, the constant checking in by the nurses, the missing your family and home. She knows what Will is going through. Even though she misses him and her mom, she isn't having as hard of a time (like Erin) with it all. Don't get me wrong, the kids do miss Mom and Will quite a bit. But Amanda is showing a lot of maturity. I am so proud of who she is becoming.

Here are some photos of the last couple of days.

Will during the first couple of days. Very weak, he could barely hold his own head up.

Will with Grandpa. The visits helped him feel better.

When Will was feeling a little better he found the closet in the room and found new place to play (and do other things that required cleaning).

I couldn't get the video the girls made for Will to load. He sat and watched it over and over again. It put a smile on his face more than once. Very sweet.

Two Steps Forward, One Step Back

2011-03-04T08:19:00.000-08:00

I know I've referenced this phrase many times in Amanda's treatment, but it is so fitting. The steps forward deserve the most attention. She bounced back from a nasty migraine. She's had a lot more viral infections lately, but no fevers. She hasn't been to the hospital with a fever in over a year. I know we are unique to be this fortunate as this is not the fate of many other pediatric cancer patients. We have finally mastered how to keep her comfortable after her lumbar punctures. She is keeping up with her school and all the extras that come with a gifted program. She managed to learn how to ski this past month. And the step forward that deserves the most attention, she turned 10. It was so pleasant to watch her excitement and anticipation. And as parents, we are so grateful to be blessed with another year of her life. Now that we are approaching the final months of her treatment, we can see many more birthdays ahead. It brings some much needed happiness and optimism.

Our step back; her last treatment round triggered a lot of joint pain. Because of the length of time she's been on steroids, there's risk to long term joint damage. She was taken off the medicine this week and goes in for an MRI next week. It will determine the remainder of her treatment regiments. Although we do not want long term problems for her, I cannot express the relief in having a month free of steroids. Sometimes you don't realize how hard something is until it's taken away.

Ughhh!

2011-02-13T15:11:00.000-08:00

Spoke too soon. She had one of her chemo migraines last night. We are once again reminded that we are still fighting cancer and are not done yet.

Love her dearly, love the Packers, but......

2011-02-10T10:15:00.000-08:00

It is two steps forward, one step back right now. Amanda's screaming headaches are becoming a thing of the past. For that, I am EXTREMELY grateful! I think its a lot easier for her to handle chemotherapy the healthier and stronger she gets. She's had one migraine in the past 4 months but it was a normal one that we could get on top of quickly. Her lumbar puncture last week was one of the easiest. But....here comes the one step back.....she is developing extremely itchy skin and bone/joint pain during her treatment rounds. Add that to roid rage and it makes for one very exhausting week of walking on eggshells for the entire family. Love her dearly, and I feel sorry for her, but she drove me crazy last week! It is really a hard process to get through. I was so happy to see her bounce back and off to school today as I find myself pretty worn out from taking care of her right now. I suppose after two years of going at this some burnout is bound to happen.

Will had his scope. We are very relieved to have several tests come back normal. As it stands the kid has some wicked heartburn that is the culprit for his weight loss. I'm finding that balance of foods and medication dosing that helps treat it. He's gaining weight and developmentally on target. We will still have to address his short stature if he doesn't gain enough (he's the size of a 7 month old at 16 months of age). Despite this, it is a relief to have his medical problems coming to more of a close. It will be a happy day at our house when we can manage going a month without a medical bill!!!
I do thank those that try and give Amanda some much needed attention during her treatment rounds. It is greatly appreciated.

97

2011-01-09T18:05:00.000-08:00

I just gave Amanda her last dose of steroids for this month. It's always a sigh of relief knowing that it's the longest stretch of time before the next dose. Despite the screaming and itchy skin they induce I'm very glad she's on them. She was too sick to have a lumbar puncture at clinic this week. She's had a terrible cold for three weeks now. I think the steroids and antibiotics are finally helping her kick it. Much to her displeasure she's pretty isolated right now. She can't risk getting sick and being put on more medications. I filled her pill box for the week. It totaled 97 different pills to swallow, and that doesn't include IV chemo or pain medication. Her body's got enough to handle right now.
She will gladly report a very pleasant Christmas. We were very fortunate to avoid any trips to the hospital. She especially enjoyed a surprise visit from her first grade teacher on Christmas Eve. They enjoys some crafts and games together. Christmas morning was a real treasure to share as a family.
We really appreciated the donations made to Primary's during the holidays. Amanda was ecstatic to get a club penguin she has wanted. It really distracted her from the routine of the hospital. I have to point out the toy dog she is holding. She got it for Christmas as part of a pet hospital. The little dog is on IV's and is diagnosed with cancer. It's very cute. She has so much fund taking care of her sick pets. She keeps telling me she's going to be a doctor when she grows up. I believe her.

Based on the number of questions I get about Will's health I'll give a quick update. He's growing, but not enough. There are still foods that cause gut problems. When his gut is giving him grief it's difficult to get him to eat anything and gain enough. He will go in for a scope later this month. Hopefully some biopsy's will help answer why foods are bothering him. From there we'll try and narrow down which foods they are. In the mean time, I have to feed him everything bothersome to try and inflame his bowels in order to get a more accurate diagnosis. It's already making for more than one ornery child at our home.

Fabulous

2010-12-09T08:55:00.000-08:00

"How's Amanda doing today?" - Dr. B.

"She's doing great. I've been so distracted by her brother's health that I haven't even noticed how amazing she is doing." - Me
"Doesn't it feel great to say those words?" - Dr. B.
"Yes!!!" - Me

Amanda is doing fabulous! I've been do distracted by Will's health that I really hadn't even noticed. She went an entire month without a migraine. She hasn't missed school. She's keeping up with her schoolwork. She even started art lessons. Having a meaningful creative outlet has boosted her moral significantly (thanks for getting it going Carol). She still has her Methotrexate crash on the weekends and her five days of monthly treatment are still very hard on her and the family. But overall, she is much better and we are starting to see part of our daughter coming back.

Primary's was so delightful to visit this last week. Amanda and I walked around and saw all the amazing Christmas trees and decorations. She rode in the elevator with Santa Clause. Donations and gifts for children were flooding in the doors. All of the staff were upbeat. Nothing radiates the Christmas spirit the same way as a children's hospital. It is charity at it finest.

GRATITUDE

2010-11-26T08:03:00.000-08:00

Crazy hair day at school.

Everyday hair day.

It's nice to have hair again.

We are still reminded that Amanda has Leukemia. The side-effects vary from day to day. Sometimes her hair randomly falls out, right now it is growing in again. Sometimes she gets bowel problems. Other times she has insomnia. Her face is bloated from the long use of steroids. Headaches are still quite frequent. She continues to have worse than normal side-effects to certain drugs. Scott and I just about pulled out our own hair out of frustration during her last treatment round because she was so ornery. But.....she hasn't been to the ER since June. She hasn't been hospitalized this past year. She's keeping up in an accelerated school program. Even though she's getting tired of chemo and it's hard side-effects, she is the healthiest and happiest she's been in two years. That is something to be grateful for!

Will is making a lot of progress. He is tolerating Nestle Boost. He's more active, alert, his bowels are acting more normal, and he's sleeping better. I still have not found the balance of foods that are bothering him, but I have some ideas. I must thank my sister-in-law for the helpful advice. When you are a bit lost it is wise to follow the footsteps of others that have already gone down the path (how I wish I'd figured that out sooner). We'll follow-up with Will's medical team in a few weeks. I am far more encouraged that we are not facing major medical problems. And that is something to be grateful for!

And so I don't forget Erin.....She said a very articulate and long sentence yesterday. For a kid that screamed more than she talked two years ago, I am amazed and grateful at the progress she has made. Once again, that is something to be grateful for!

The Medical Mystery Tour

2010-11-12T09:22:00.000-08:00

When watching mysteries I'm a bit clueless with figuring out who-done-it. Given that my ability to figure out a good plot is limited, I cannot expect to figure out what is causing Will's failure to thrive. We still don't have a good diagnosis for him. Each specialist seems to have their own theory and way to treat it. We're still among a lot of lab work. A lot of problems have been ruled out - no brain tumor, his liver is not the culprit, and whatever happened in-utero is not what is currently contributing to his growth problems. We are being told it's a nutrition problem, but we don't know what kind of nutritional problem. For now Will is to try a greater variety of protein based formulas. It could be as simple as just figuring out food intolerance's. So, if he reacts poorly and doesn't gain weight the plan is to do a scope of his gut next month. Growth hormones are on hold until the gut issue can be resolved since he has to be absorbing his food properly in order to grow from it. I'm a bit discouraged with the long process this is turning out to be and watching him go through so much discomfort. But it is manageable. Watching all the kids go in and out of the hospital this week reminded me what we've already been through and helped me reflect that our medical drama could be a lot worse.

That's a lot of beads!

2010-11-10T18:55:00.000-08:00

Amanda had chemotherapy today. All of the staff were surprised at how good she looked. Her psychologist said he didn't recognize her because she's grown so much and looks so much healthier than the last time he saw her. Her counts are good, her health is currently stable, and she seems to be handling the chemotherapy well.
Amanda is eager to show off her Color's of Courage necklace. Each bead represents a specific action accomplished with chemotherapy. It includes such tasks as each steroid round, each time her port is accessed, each hospital visit, lumbar puncture, emergency room visit, etc. As you can see, she has aquired A LOT OF BEADS!!!! She is wearing it with pride.

Complicated

2010-11-06T06:54:00.000-07:00

Amanda is doing well, so Will is going to steal the spotlight for a bit.

Will went to the Endocrinologist. Her exact words, "He is complicated!" Her jaw about hit the floor when she read his medical history. She couldn't believe that he survived and that he is doing so well developmentally. She fortunately did not diagnose a major disease or disorder. Rather his problems are a result of him not getting what he needed in utero. He'll start growth hormones after an MRI next week (a brain tumor has to be ruled out, but is not suspected). She talked about how growth hormone is produced and processed. She indicated that the low growth hormone is causing malabsorption of food, which would explain the many barf covered loads of laundry I've done this week and his weight loss. All of this stems from the liver. His liver took the brunt of his growth restriction as an infant. It was the lingering problem when he was born. And it is starting to make sense that it is what may be causing a good portion of his failure to thrive. It's a relief to start getting some answers. Everything that has been suggested so far has just made him more sick and miserable. The growth hormones should help him grow and digest his food better. We will still follow-up with a GI doctor to ensure that there isn't more going on. And I'd better come up with a good distraction for giving his daily injections in the butt. He's going to need them for 2-3 years, but don't tell him that!

SUPERHERO

2010-11-03T09:03:00.000-07:00

"When you're stumbling

it's gonna take a little time
to make it to the other side
so don't miss the diamonds along the way."
- Sheryl Crow

Superhero was the theme among my girls for Halloween. Even their favorite dinosaurs joined in. I was glad Amanda was able to get out. Weekends have become a lot more challenging for her since her Friday night Methotrexate dose was increased. She's wiped out for most of Saturday and Sunday. I was happy to see her determination to be able to get out and enjoy herself so much. It meant a lot of naps and pain medicine. But she had a really good time. Her superhero costume seems so fitting.
I got such a kick out of Will in his costume. He waddled just like a penguin from all of the warm layers of clothing. It's hard to keep him warm because he's so skinny. And unfortunately, he is loosing weight. His doctor's are concerned. He tested negative for food allergies, and this means a huge expansion with his diet and a relief on my part (been there, done that!). But he's had allergy-like symptoms for some unknown reason. The doctor is leaning towards an inflammatory bowel syndrome. It's apparent something is wrong. With every increased food item he seems to struggle with vomiting, gagging, and a lot of indigestion. We'll meet with endocrinology tomorrow and the feeding clinic/GI doctor next week. I'm hoping between these visits we'll finally get moving towards a better diagnosis and treatment for him because what we are trying now isn't working for him.

Extremes

2010-10-23T19:22:00.001-07:00

"What goes up must come down." -Blood Sweat and Tears
Amanda had, dare I say, one of her best recovery's from a lumbar puncture last week. She did puke in the car on the ride down from nerves (mental note to self, I took the vomit bucket out way too early!) But she looked really good going into the procedure. Now keep in mind, while she is asleep they stick a needle in her lower spine to extract cerebral fluid and replace it with a lot of bright yellow chemo (I've unfortunately seen the big syringe). It is not the easiest of chemo treatments. But she woke up looking pretty good, not groggy and uncomfortable like usual. She was eager to eat, play video games, and didn't need to sleep it off for as long. She was more active at home and eager to get out of the house, as you can see with her creative method of packing her hydration pack around outside. Everything went as well as hoped for after a lot of trial and error. A few days ago she had a 24 hour stretch of acting like herself again. She was bubbly, VERY talkative, friendly....everything that Amanda was before cancer. She has not acted like this for that long in over two years. It was wonderful to experience again. It was such a good reminder that once her body heals, her bright spirit will dominate once again.

But......there always seems to be a but........today I came home from a lovely luncheon with a friend that I haven't seen in about 10 years. Amanda had that look on her face. The headache hit for several hours with crying and cringing, the vomiting lasted for four rounds, and she looked a terrible shade of green. The reason she was doing so well a few days ago was because her blood counts were too high. She's had such a big growth spurt that all of her chemo doses were increased last week and today it hit. Despite a rough day today, the glimpse of her acting like herself again brought a lot of encouragement that makes bearing all of this a bit easier.

thought I'd share some pumpkin pickin pics

Growth Spurt

2010-10-08T14:43:00.000-07:00

I can't take credit for the great pics. Dad, you can experiment on our family any time!

Amanda woke up today and looked like she's grown two full inches. She has been eating me out of house and home recently and it finally kicked into her height rather than her waist. She is changing very rapidly into a young tween. She doesn't like the changes. She wants to stay little forever. But her bright mind and rapidly growing body are taking off whether she likes it or not. I looked at a picture from when she first started treatment and it is just a faded memory of what she looks like today. I know when she was diagnosed that we were ending the little girl phase and she'd emerge as a beautiful teenager. We are right on track.

She's had a great week. She looks good. She is happy. She has a lumbar puncture next week and we will quickly be reminded that she is still being treated for cancer. She has made the connection that these procedures make her feel yucky and are no fun. I reminded her that we are on the home stretch. We are counting down the few that are remaining. And I reminded her that we finally we have a good game plan to help her be more comfortable. She's really come a long way in handling it all better as I can tell she is more confident.

Will met with his feeding specialists yesterday and they gave us some good ideas for helping him gain weight. I finally found a formula that he can tolerate - despite it's $$$ price tag (just google Elecare and you'll choke!) One can only lasts a few days. But he is well worth it.! We're going to start treating him for reflux and have special diet and eating instructions in place. If he doesn't gain weight within a few weeks we will go back for a bunch of testing. The goal is to avoid a feeding tube. Knowing personally how miserable they are, I am VERY motivated to get his weight up. We have some physical therapy ahead and several follow-up appointments. Because he's doing so well developmentally he has a very good prognosis. And knowing that eases my mind greatly. Now it's his turn for a growth spurt!

Tired

2010-10-02T21:20:00.001-07:00

I know I have cute children. Some days I have to work harder at reminding myself of this. On the more challenging days I sometimes find myself wondering how I would react if I was observing them for the first time. It is then much easier to smile and be amused by their strong personalities and unique quirks. I find myself needing to do this when overwhelmed and tired, which has become the new norm for my life.

I've titled this "tired" for both Amanda and myself. School is in full gear. Keeping up is a challenge. After juggling and experimenting with activities and what she can keep up with, I've had to remind myself why we keep it simple. The headaches and vomiting have increased. It is her body's way of letting us know that it is exhausted, or fighting off viral bugs. There is no running to piano lessons, soccer, or gymnastics at our house. There are few if any movie outings or days at the park. Amanda is rarely involved in running errands or heading out to the store. All energy goes to school, homework, and a little bit of socializing. That is how it will stay for at least another year. She doesn't always know what she is missing, but it is discouraging when she does. It is just a season of our life. Seasons eventually change.

I've been on a reading kick lately. I really enjoy reading about scientific discoveries and research. I've read some great information pertaining to childhood cancers. I could write an entire blog entry on the interesting facts I've learned. But what stood out was the section on caretakers and the toll it takes on them. Particularly that it is quite common for parents to try to diminish to other people how hard it is and to sugar coat how they are doing. I am the poster child for this. Honesty opens up vulnerabilities. But lately I find that I cannot hide how tired I am. I have been for quite a while. I even switched to glasses from contacts to cover up the chronic bags under my eyes. Caring for Amanda while I was sick was physically exhausting. I've not had a recovery period. There were days I found myself crawling up the stairs asking God for help to make it up because I was too weak, only to find myself lifting her and bearing her weight because she was weaker than me. It was hard. Really hard. Then Will came and I found myself waking up every45 minutes to 2 hours for over a year. That's just the physical exhaustion. The emotional stress and worry have been great. Some days I feel that I will crack under the pressure. I am not super human. I still have and need a lot of help. It is easiest to open up to close friends and family. I appreciate their listening ears. Often I am asked "how do you do it?". The answer is always the same - I just do. I have to.

Will is starting to sleep better. He stopped nursing and for some odd reason that helped. But in doing so, he started loosing weight. I think it's because he started walking, but regardless he is heading the wrong direction on his growth chart. We're hoping to meet with some specialists next week to figure out what to do. I can't get him to eat or drink enough. We'll just do our best until the doctors can give us some answers.

"It smell's like a poptart in here"

2010-09-13T09:11:00.000-07:00

.....says Erin to the furniture store clerk while shopping for a new bed. The comment has nothing to do with my blog entry. I just needed a good icebreaker to distract from my neglected, long absence. I do thank anybody still reading this as my dedication has waned a bit.

I am constantly asked how Amanda is doing. The answer is always the same...it depends on the day. It seems lately that she is starting to have many more good days than bad. Throwing up in front of everybody at Grandma and Grandpa's 50th anniversary dinner, well, that was a very bad day. It just depends. But overall she is more energetic, stronger and healthier. She is sleeping much better. She is also back at school and keeping up with a full day. I'm glad to have her back at school, even though it's reminded me of germs and the fear of fevers. The summer was somewhat challenging. She thinks she can do more than she really can. The heat was hard on her and it triggered more migraines, so a lot of down time was forced on her. She has every episode of Phineas and Ferb memorized. I was glad to hear her get more excited learning about the water cycle rather than the adventures of Perry the Platypus.

Anybody want a BIG castle? It will only take up half your basement - but keeps them busy.
We enjoyed a quick trip to Park City. A hotel swimming pool and the alpine slide were the highlight of the summer.
Will celebrated his first birthday. I can't believe a year has already passed. Birthday's have new meaning at our home. They are really reason to celebrate and be grateful for what we have. We find ourselves back in the throng of medical appointments again. He's not gaining weight like he should. When you have a one year old that eats like a six month old and seems to have a lot of food aversions, it becomes a bit of a problem. We're waiting to get in to an endocrinologist. I joke with Scott that we've been to every clinic on the first floor of Primary Children's between our three kids. Looks like we're expanding to another level! It's yet another challenge, but one worth taking on. We're totally in love with this kid!

Relay for Life Central Davis 2010.mp4

2010-08-17T18:00:00.000-07:00

We were sent a link to this post on Youtube. Pretty cool job done by the people who put the Relay for Life together. You will see some familiar faces on there as well.

RELAY FOR LIFE 2010

2010-07-31T15:33:00.000-07:00

Amanda participated in Relay For Life. Words cannot describe how much she enjoyed herself. She ran around for hours laughing and playing. She proudly walked the survivors lap while people cheered. I choked back tears watching as she radiated happiness and life. She has come so far in one year. We are so grateful to be able to celebrate her life!

We are in awe at the amount of support we have received financially. It has far exceeded our expectations. We are still getting donations and will post a final tally. It's because of donations like these that Leukemia ALL has such a high cure rate (95% for Amanda). Thank you so much for helping fund research, cancer cures, and support for families battling this disease.

We especially need to thank Rick for walking over 50 miles. Yes, that's right, 50 miles!!! He started at the beginning and went all night until it ended - no sleep and very few breaks. You always leave us in awe!

Many other thanks are in order.

Scott, thanks for having the desire to do this and for taking what little time you have to organize our team.

Thanks Dad for the great pictures, helping with all the hauling of stuff, and proving to me that you really are quite handy in the kitchen.

Scott's parents - for the many long hours with Will, always being around to help whenever needed, and for adding a lot of hours on the track.

Mom and Carol - for herding cats (my children)

Jenny & Robert - thanks for sticking out a very long night and raising such awesome teenagers.

Dayan, Yassah, and friends - for being such awesome teenagers! I'm amazed at what great kids you are. You were more than willing to help and you guys put in some serious track time!

Deanna - for taking my request for a few items to feed the crew and turning it into a table full of delectable delights.

Dan, Teri, and kids - thanks for being great friends that are always there for us. Hope you can walk tomorrow Dan. You are seriously going to be feeling those amazing 16 miles.
To Erin - for taking one for the team and being the only person to actually sleep.

Craig, Jean, Kids - for helping out with the food sales (learned a few tricks for sweet talking the Health Department) and for continuing to support us though far away.

Ed, Viki, John - thanks for being willing to do whatever was needed. We appreciated you sweating it out during the super hot hours.

Matt, Mary Ann and Mikey - 7 months Pregnant, in that heat? Enough said!!!

Donna - for the great ice cream making tips.

Thank you to all our friends and family that stopped by, wanted to come and couldn't, and those that passed on well wishes. We appreciate all of the support!

Relay

2010-07-28T07:26:00.000-07:00

I've had a request for a quick link to Amanda's team page for Relay for Life.

http://main.acsevents.org/site/TR?pg=team&fr_id=21760&team_id=755882

We'd love to see as many friends and family there to cheer her and others on. There will be fundraising activities there to keep the young ones entertained. Thank you so much for the support we have received! We are always in awe with how many people are thinking of her.

EUREKA!!!

2010-07-21T21:03:00.000-07:00

For many months Amanda has endured the wrath of miserable lumbar punctures. She had clinic today and for the first time dreaded it. Not because of needles or all the usual anxieties. She feared it because of the headache she'd get from the LP. After a lot of family prayer (thank you Scott for the beautiful blessing), persistence, and incredible support from her doctor's I am so happy to report that we FINALLY are having a recovery free of a screaming headaches, pain, and vomiting. All of her doctors agree that she is very sensitive to the procedure itself, not so much the medication they are using. They are administering the chemo much more carefully now. And something as simple as letting her rest and not moving her for a good three hours post-recovery made a huge difference. She's one of those "special" patients that needs a little extra care. All of her staff at Primary's went above and beyond today to accommodate her. We are so grateful for them. She's still on IV fluids for a few days, and the beloved IV Benadryl and Zofran are prepared for attack if needed. So far she is eating, drinking, and happily watching Phineas and Ferb while taking care of her virtual pets online. It is such a wonderful change to have her recovering comfortably!

Amanda is looking forward to Relay for Life at the end of the month. Thanks to so many of you for your generous donations! If the cash flow is a bit tight a great way to still show support is in letting Amanda know that you are cheering her on - it really brightens her day. When I told her that survivors circle a lap with everyone cheering for them, her face lit up!!! She is really looking forward to it.

Join in the Relay for Life

2010-07-04T23:52:00.000-07:00

This is a call to all friends, family members, and any other followers of this blog to join us in our first fund raiser for the American Cancer Society. We are getting a group together to walk in the Relay for Life event on July 30th and 31st. This event will be at Barnes Park in Kaysville and will be a 24 hour walk to raise funds for the ACS. Since Amanda's diagnosis early last year we have been on the receiving end of many gifts and charity. We always wished there was some way to pay it forward and be able to do something for others going through similar situations.

Though we can't possibly do all we would love to be able to do to make life better for those going through different stages of cancer, we can make an effort no matter how small. It all adds up to greater things for someone whom you may never know or meet. We hope you will join us either as a team member walking, or as a donor to help the great cause. If you are interested, please click on the link to learn more, donate, or join our team.

http://main.acsevents.org/site/TR?pg=entry&fr_id=21760

The name of our team will be Supporters of Amanda. Whether we have several on our team or just a couple of us, we will be trading off as we walk for 24 hours. It should be a good time. We will provide more details as often as we can.

McCravings and McMedicines

2010-06-27T18:48:00.000-07:00

A couple of years ago, while we let the kids play in the play area at the local McDonald's, Mary Ann and I were coming up with all new McDonald's terms. I'm pretty sure it was during one of the McRib phases. Like, "this McRib sandwich is making me McSick." Or, "the smell from all the kids socks in the play area is McStinky."

I've had to add another to the long list we were coming up with back then. The McCravings or McMedicine. Amanda's chemo has given her many side effects. Very high mood swings and overall orneriness are among them. This weekend was no different. On Saturday there was plenty of whaling and lamenting about having to have the chemo and how "its the worstest day ever." We do what we can to try to accommodate the moods but have found there is very difficult line to define between where we need to be the parent and live by the rules that were set, and where and when to give in to a child that is going through very difficult times and is heavily drugged. Sometimes it is very tough to know what side to lean towards.

When Amanda gets cravings for something it can be a tough battle with her until she either gets what she is looking for, or gets distracted enough with something else. Since early morning Saturday, Amanda had the craving for a McDonald's hamburger. She was asking for one before 10:00 am. We tried to hold her off as long as possible but paid the price for waiting so long. We didn't get out until maybe 5-6 hours later. She spent a lot of the day crying, screaming, getting her massive headaches from the crying, and overall having one of her "very bad days." When we finally hit that drive through it was like flipping the switch. She downed the hamburger and no more crying, she started talking normally, she perked up, and became more like herself. I don't know if I'd every call something from McD's medicine, but it sure cured what was ailing her yesterday.

On a side note, after the burger she had enough left in her to go to Hobby Lobby to go find some more projects to keep her busy. While wandering through the store, Erin pointed this out to me. She said, "Dad, Dad, look. I'm on the crayon box." I think Amanda pointed it out to Erin but Erin was pretty excited how much it looked like her. You decide.
After Hobby Lobby we hit the snow cone shack for a quick cool down. Everyone downed their snow cone pretty quickly except Amanda. She only ate about half of hers. We try several different ways to keep her hydrated and drinking during chemo because it helps with the migraines. But sometimes no matter what we try she just doesn't seem to be able to drink as much as she should. We didn't push our luck because right after the snow cone and we hoped in the car and we heard, "I'm getting a headache." That means head home quick and stay on top of it before it becomes unbearable. We still dream of when we can get out further away from home as a family but it seems we don't get too far from home lately. You have to take enjoyment in the little moments whenever you can.

Summer Break

2010-06-17T21:50:00.000-07:00

"School's out for summer!!!" - Alice Cooper

Thanks Miss Moulton. There's a reason you are Teacher of the Year many times over.

Amanda made it through third grade. Perhaps barely. Her teacher pointed out that it was because Amanda picks up on everything so quickly. My comment was "you should see her when she doesn't have cancer." I am so grateful to her teacher. She was absolutely fabulous to work with. We appreciated the patience and kindness shown from her and the class.

Keeping Amanda busy this summer is turning into an interesting problem. She thinks she is better than she really is. She wears out so easily. Fortunately she has scaled back her lofty aspirations from summer's past and is still content with small activities. She's also been a bit more emotional and clingy lately. Scott's entire family went on a cruise. We stayed behind. It's hard getting left behind and I think she's keenly aware of it. She doesn't mind what she's missing as much as she misses the people. Most of my family is gone on a trip this week. I think having everybody gone was a a scary reminder of her fear of being alone. Amanda can be hugging me till I turn blue and she will still say "I want you." She's always been this way. Cancer's just made it worse. I suppose some emotional fear comes with the territory. I'll work on dishing out some extra attention.

I have to admit that my thoughts are a bit jumbled. On one hand, I've had this strong desire to start living again, to make my time on earth a bit more meaningful, to be more grateful, to love my family even more. On the other hand, I am painfully aware of so many people that have lost or are losing their life to cancer. I do no understand why Amanda is still here and they are not. She has something to offer all of us, and I have the responsibility to build her up so she can can accomplish it. I do no fully understand what it is, but I know that her life is a gift and that she is meant to be here. My heart aches for those that cannot have what I do. I am so fortunate to have my children. I suppose being grateful starts with living happily. I'm finding a lot more joy in my children and am trying to accomplish as much as I can within my means. We are starting small; Amanda and I are working on a garden. It is a great start together and I am tickled with how excited she gets about it. I am so grateful to still have her.

What do you expect

2010-05-26T16:44:00.000-07:00

When you put the nine month old in charge of blogging, you can only expect a month going by with nothing entered and a whole lot of drool on the keyboard.
I suppose I shouldn't bestow unearned blame on my children, despite the kick I get out of it. In all honesty, life has been feeling (dare I say) more "normal" lately. I've already dictated several blog entries in my head, but life has become BUSY and I find myself distracted with other priorities. I took my doctor's very blunt orders to stop having children and did something about it. I find myself in slow recovery mode again, but with the added benefit that Amanda is doing great and doesn't require the intensive care as she did before. She had clinic today and I told the doctor that she's had her best month in over 18. She's even sleeping better. The doctor told me that the last intense treatment round (which was last October for Amanda) is so hard on the body that it takes a good 6 months to bounce back. This month has given me a glimpse of the energetic, creative, curious, and playful person that Amanda really is, and the hope that it might be part of our life once again. It's nice to have back. During clinic there was a child Amanda's age, new to treatment, screaming at the top of his lungs about how he did not want to be there! It choked me up - it's hard to see. Amanda was the same way at the start of treatment. Clinic days ringed of frustration and fear. I am so grateful to be where we are at in her treatment and to see her strong resiliency. It's a lot easier to have hope now.I really have three beautiful, wonderful children. I'll have to remind myself of this often during roid rage week!

ONE YEAR AGO

2010-05-01T07:57:00.000-07:00

Amanda age 8 - April 2009

"Did you know it was all going to go so wrong for you?"
- Pink Floyd

Yesterday was Amanda's one year anniversary for being diagnosed with Acute Lymphoblastic Leukemia. There are so many thoughts in my head that I can't even begin to figure out what to say. I thought I'd highliht some pictures from a year ago. I asked her what she thought about her one year mark. She said, "It's been hard but worth it."

So often I am asked how I knew she was sick. I think as a mother you always know when your kids aren't quite right. But looking at these pictures you can see that despite being sick she still happily lived her life. Six months before she was diagnosed she started having a lot of migraines, was ornery, and seemed fatigued. Over time she started loosing her appetite, was constantly pale, and slept more than usual. At the end of February the headaches turned into almost daily fevers and she developed bone pain throughout various places. At this point I knew something was very wrong, but it took two months of doctor's appointments and a week long hospital stay to diagnose her. The cancer was undetectable by standard tests as it had not spread past her bone marrow. It took a bone marrow biopsy to confirm it. Her doctor said that the cancer was packed in there so tightly that she could hardly get a sample out. I'll never forget that day. It was a terrible day.

Equally difficult was the following day. We found out our baby had stopped growing and was dying. The doctor told us to have an abortion. I left his office to go meet with Amanda's doctor to start chemotherapy. The feelings of those two days are too difficult to describe. I was on IV's myself and so sick and run down from my pregnancy. I could barely take care of myself, let alone my children. I had just found out I was getting laid off from my job while carrying the health insurance and Erin had just qualified for early intervention. Everything seemed impossible to face. I will forever be grateful to family and friends for picking up the pieces of our shattered family at that time. One year marks are a funny thing. They flood back memories and give you that permission to reflect. Time slowly heals the wounds.

A year later my kids are still recovering from various flu bugs,ear infections, and cancer treatments are still a struggle. It's better, but still a struggle. Amanda had clinic this past week. She woke up from a lumbar puncture and screamed in pain whenever she sat up. I hated that she had to experience the pain, but glad the nurses were able to observe what I've been describing for months now. It fortunately triggered some extra help from her doctor and we now have a different game plan for the next LP. Cancer and chemotherapy still rule her life. She roid-rage screamed for two hours yesterday about all the activities she misses. She has every reason to complain. It is still a challenge. But she said it best, it is worth it! Her cancer is curable and every day we are one step closer to that cure.

Amanda the day of her baptism, February 28, 2009. The following day her fevers began.

A month into Amanda's fevers - I was four months pregnant and on a PICC. Nobody in this picture was well. This was our first family outing after months of me being in bed, and it was our last outing before Amanda was diagnosed. It's hard to look at this picture now because deep down I knew something was very wrong with all of my children, but was too sick to do much about it.

Amanda was hospitalized a few days after this picture was taken. I think this picture shows what leukemia looks like.
I took no pictures while at the hospital. I had too much of my own medical equipment to pack and frankly, I just didn't feel like capturing the moment. Thanks for the pics Teri. Knowing that Amanda's cancer is curable made moving forward with treatment more manageable.

Still on the mend

2010-04-19T12:06:00.000-07:00

Amanda woke up full of energy today. Ocassionally there are moments where I have glimpses of the energetic person she once was. She breezed through some homework, headed off to school an hour earlier, and seemed quite happy. A long ago friend visited this weekend (sorry Ty, I forgot to pull out the camera). It made Amanda's day. His family made her a photo album of good times past. She's carried the album around all weekend. She's been talking a lot lately about missing her old life. She seemed to really need a walk down memory lane.
This picture is not the best of her, but shows off her sickly pale skin blending into the paint a few days ago. I think I'll ask the paint company to rename the color to "pale cancer." She looks much better today. I wish I could say the same for the rest of us as we continue to try and rebound. Sometimes I look at Scott and myself and think that we don't even closely resemble the same people. There are times I don't recognize myself in the mirror anymore from the fatigue and stresses of life. I know Scott is tired too. It just come with the territory.

As promised, here are some pictures.

Easter celebration - decorating eggs with Rick and Carol. None were eaten, but plenty were decorated.

Egg hunt at Grandma's house with the cousins. It was much nicer having it on Easter rather than Halloween.
Will and Scott doing their nebulizer thing.

It's easy to lament about fatigue and stress. I find a lot of healing and happiness with our little guy. He just discovered his tongue. He thinks it is the coolest thing ever. He sticks it out all day long, and it's really long. He's a man of many expressions - see for yourself how he just brightens the day.

HOUSE OF ILL'S

2010-04-14T15:56:00.000-07:00

I had a bunch of pictures to post but my computer is unwilling to cooperate and I don't feel well enough to take it on. An IOU is in order.

We have been non-stop sick at our house. I am sick (literally) of viral bugs. And the last few have been really bad. Both Will and Scott have been on nebulizer treatments, bronchitis abounds, antibiotics have been dished out, and the night is rattled with the sounds of coughs and the booger sucking machine. Whatever we've had, you don't want it! Now that we are trying to integrate back onto society the inevitable viral bugs are creeping in despite our best efforts. Amanda had about two weeks of coughing and complaining. Whenever she turns the same pale color as our wall paint color, I know she's pretty sick. Amanda has missed more school in the past month than in the past four months. Her accelerated school program doesn't slow down for cancer. She has moments of struggling to keep pace, but now that she is feeling better, she just glides through the work. She is starting to act like herself again, the sign that her body is on the mend.

I recently gave a talk in church on grace. I needed extensive study to feel confident in giving it. And despite the hours devoted to it, I can sum it up in one experience. A few days last week were devoted to ongoing fevers between all of us. All but one of us. Amanda never ran one. By all logic she should have. She is the most vulnerable. If she had run a fever, Scott and I would not have been well enough to take her in. I am grateful for God's tender mercies and for prayers that invite them in. It is so hard to take care of sick kids when you yourself are sick and overwhelmed by numerous responsibilities. After looking at the thermometer numerous times in disbelief I know that a little heavenly help is sent to get us through all of this.

The Face of Chemo

2010-04-04T09:22:00.000-07:00

"I've got a long way to run." - Collective Soul

Amanda continues with her monthly chemo treatment, daily oral chemo drugs, knock her out weekend chemo, and 5 days a month of "I don't feel myself" steroids. She had a great clinic day on Wednesday. We were in and out in a hour. Despite a great clinic day, she is giving us plenty to worry about. She has a bad upper respiratory infection and chemo isn't going to help her get over it easily. Her doctor thought she was healthy enough to push through, and her counts were surprisingly high. Her sinus and eye infection didn't bring her counts down as low as we thought. She developed an allergic reaction to the eye drops and ended up with a very swollen eye for several days (and a very ornery demeanor to match). So to be sick on top of it, needless to say, she is run down. Very run down. I'm just crossing my fingers that it doesn't turn in to pneumonia. She has lamented several times about being tired of being sick. She has every reason to complain. Unfortunately, she has a ways to go still.

Catching Up

2010-03-25T20:19:00.000-07:00

First, I must apologize for the extended absence. Life has felt a bit more normal lately. Blogging reminds me of cancer - thus the inclination of avoidance.

Second, I must thank the many people who follow this blog, the many new people who find it (I don't know how, but welcome aboard), the people unknown to us , and the many people that continue to show support and encouragement. Thank you!

And third, the most important part, updating how Amanda is doing. I must say, whatever immune system she has left is working like a champ! She really is doing so well that I am amazed. She's super cautious at school and whatever she picks up from her sister (the biggest germ culprit) she's done quite well at fighting off with no fevers - which means no emergency trips to primary's! She finally succumbed to a bad sinus infection a few days ago. It went rogue and spread very quickly into her eye. So she's been out of school this week and is resting a lot. Grandma sewed her an eye patch and she is milking the sympathy of her plight to the best of her ability.

She has been keeping up with her drinking. It is making a HUGE difference with her overall health. So to any other cancer fighters out there, stay hydrated! It helps a lot. I figured out smaller water bottles are a lot more kid friendly and motivating to drink. Her teacher is helping with reminders, and she earns a pretty decent allowance for empty water bottles. Her shopping list keeps expanding, which increases her motivation. Getting it to happen takes some effort, but it's working.

She is having a lot of sleep problems again, mostly during the first five hours after going to bed. There are nights she's up till 1 in the morning, or she wakes up 6 times in a jittery agitated state, or she talks in her sleep and argues that she really isn't asleep. Waking up means crying and complaining that she can't fall asleep or lamenting about being alone. We started to notice an increased pattern on her antibiotic nights. She takes a weekly antibiotic to prevent pneumonia. Again we got the "that's not the normal side effect" lingo from her doctor. She's developed quite a list now. Deviating from the medication is taboo with a curable cancer so we just changed the dosing schedule. It has only helped slightly. Perhaps when her infection clears up it might improve a bit more. I'm running out of ideas. Alas, a good night's sleep is just not meant to be at our household. As a result of the insomnia anxiety she has developed quite the bedtime routine. Her bedroom illuminates from numerous nightlights, she now has to have the radio on, the hall light on, a Kleenex up the nose when stuffy, the song "You Are My Sunshine" sung, and her clan of proxy stuffed animals must be in just the right place. I call them proxy because I finally figured out they all represent the people most important to her. She "adopted" animals from Will and Erin (more like stole them). The rest were given to her. I think each important family member is represented somehow. Cute, yes. Cute after my 6th visit in her room telling her go to sleep, not so much.

Hair, Beautiful Hair

2010-03-05T09:17:00.000-08:00

Amanda came up to me recently with a comb. I asked her, "What do you want me to do with this?" With surprise I realized that after 8 months of baldness, she once again has hair to take care of. We both commented about how we'll miss her scalp. She was very cute bald. Her new hair is thicker, darker, and has a bit more wave to it than the old. We'll gladly take it.

Happy Day!

2010-02-28T15:38:00.000-08:00

Amanda just turned nine! Wow. She made it! When she was originally diagnosed with Leukemia and hospitalized one of the first things she demanded was no hospitals and no blood draws on her birthday. Mission accomplished! At one moment on her birthday I looked at her smiling and realized how many times she's been sad this past year. It was so rewarding to see her enjoy something she has looked forward to so much.

A fun birthday play-date with cousins

Perhaps mom is more happy than Amanda to celebrate such an important milestone.

Yes, she was spoiled. She deserved to be.

As our family gradually enters back in to society among an exceptionally bad cold/flu year, we have been dealing with our fair share of bugs. Amanda is doing an exceptional job with her new sanitation skills. She reminds us to Clorox items and knows when and where to avoid germs. I am so proud of her and what she has adapted to. She no longer complains about wearing masks like she used to. Unfortunately she has not gone unscathed. I can tell when she's fighting something. She gets really pale, lethargic, and her head aches. She's doing a wonderful job at communicating to me her physical limitations and fortunately she's avoided any real nasty bugs for several weeks now. Her weekend chemo dosing still remains tough on her little body and school usually wipes her out. But she is happier. Her birthday greatly added to her health and happiness. Happy age nine Amanda!!!!

Staying Positive

2010-02-12T14:39:00.000-08:00

Despite feeling run down most of the time and very out of sync adjusting to a new phase of life, expressing gratitude fuels my optimism. And I have good reason to try and stay positive.

Amanda's birthday is coming up. Need I say more. What an honor it is to have it granted to us again. She is of course very excited. She is also feeling better once again. I continue to be amazed at how quickly she bounces back. She is scheduled to finish chemotherapy treatment in July of 2011, so long as the cancer doesn't relapse (which she is low risk for). I originally thought it was November 2011. I was so excited to hear an earlier end date to her treatment. Although she still has 16 more months of treatment and five more years of close monitoring, there is now a light at the end of a very dark tunnel.

Erin tested negative for her food allergies. You wouldn't think that garlic and coconut would be that hard to work around, but I can assure you that they derive into about three pages worth of chemical compounds that exist in just about everything processed and cosmetic. She will always have various allergies and intolerance's, but her doctor is optimistic that these two are behind us. I still can't figure out what to feed her. She's rather leery of her newly expanded diet. But she can finally eat the salsa and Spaghetti'os that she has longed for. And I no longer have to banish Amanda to her bedroom to eat forbidden food.

Will is doing great. His blood clot is almost completely gone. One more follow-up visit in the summer should end this medical chapter of his life. Our hopes of getting him to weight one pound and make it to 26 weeks gestation are becoming a fading memory replaced by a happy and active five month old. Much to the surprise of his doctors he is doing everything a baby his age should just at half the size. He is adored by our family and the majority of the time is a delight to take care of. He continues to bring much needed joy into our home!

Poor Thing

2010-02-04T12:54:00.000-08:00

Amanda had a difficult treatment day yesterday. It started with not being scheduled at clinic despite being told we had the first appointment of the day. Her appointment seemed to go to a worthy recipient and instead we had to hang out for a few hours without her being able to eat or drink before her lumbar puncture. Since we have yet perfected a treatment regiment to prevent her massive headaches following the procedure I agreed to try a different anti-nausea medication. Long story short, it was a big mistake. We traded in the massive headache for vomiting every 12 minutes for several hours. I know that misery well and felt so bad for her. She didn't complain or cry, just puked and became increasingly lethargic. "This isn't the usual reaction" was the comment made by the doctor. I'm getting tired of hearing those words. And of all the days for home health to be four hours later than usual with her hydration pack. Once drugged (IV benadryl may become our best friend), she slipped into a very restless sleep and soaked up the fluids like a sponge. She has five more of these procedures left (so long as she doesn't relapse). I want so badly to find a way to prevent it's nasty side-effects, but am afraid that we'll perfect it too late or not at all. Sometimes with cancer you just have to painfully accept what's out of your control. On the bright side, today she is quietly playing, with no headache, and acting like it never happened.

On a lighter note, I need to put a plug in for Amanda's cousin, Benjamin. He was just highlighted on the make-a-wish web site for Feb 1st. He's been a great inspiration for us to hang in there!

www.makeawishfoundationofutah.blogspot.com

Speaking of make-a-wish, many have asked if we plan to have her participate in the program. We all eagerly look forward to it for her, but after a week like this one we are reminded why we have chosen to hold off a while longer.

One last comment; thanks for the water drinking ideas. I met with her teacher about it. I think we have a pretty good plan in place that we'll try along with suggestions to try different water bottles.

Before and After

2010-02-01T08:46:00.000-08:00

"How fragile we are" - Sting

A chaotic life and dying computer modem has limited my ability to blog. In my mind I've already published two other posts outlining her science day (which I'll just post pictures below) and feeling a bit more optimistic (which was a fleeting moment). I had this gut feeling Amanda was going to decline again. She had a mild cold last week - no big deal. But trying to get her to drink has become a huge challenge, especially when she doesn't feel well. She earns an allowance by drinking, but that doesn't seem to be enough motivation to get her to remember. It's not realistic for me to follow her around all day with a straw shoved in her mouth. It caught up to her Saturday night and the migraine hit. And they aren't normal migraines. They are cancer migraines. They are much worse. A combination of her Methotrexate dosing and not enough fluid intake makes for a pretty toxic little body. Once again, screaming pain, throwing up several times, and lots of crying. I'm getting better at distracting her from the misery. But it still remains an exhausting ordeal for the both of us. Any suggestions to get her to drink more, especially at school?

During her migraine and then 12 hours later.

As for science day; she enjoyed a trip to the planetarium. Our first big outing in over a year! She loved it. The next day was an ice skating field trip. I really thought she wouldn't fare well. She proved me wrong and has been begging me to take her again.
She loved learning about the moon, planets, and constellations.

Here's her science fair presentation. I'm amazed how how much darker her hair is coming in now and very thick!

Erin's watching me and asking where her picture is. I'm not in the mood for a tantrum, so here's one of her going to school.

TECHNOLOGY

2010-01-20T14:00:00.000-08:00

"Hmmmm. They have the internet on computers now."
- Homer Simpson

The blog is finally technologically beautified. I think Amanda could have figured it out much faster than I did!

cancer obsession

2010-01-15T15:37:00.000-08:00

Amanda and Erin started back in school this week. Wow my house sure stays cleaner when they are gone! After being smothered for the past 10 months, it's really weird to have my home so quiet. Amanda woke up Tuesday acting like her normal, perky self, eager to go to school. But since she's been back I've noticed a bit of an obsession about cancer. She's drawing pictures about it during her free time, many of her homework assignments will refer to cancer. And science fair is next week. Guess what she wants to do a presentation on. She was determined to find a germ that causes cancer and asked me to get a blood sample from the clinic to take a look at. She's a post doctorate shy of discovering this, but if anybody's going to find the cause of cancer it will probably be her. I'm glad she's turning her previous anger towards cancer into curiosity. We negotiated with the teacher to just do a presentation on what Leukemia ALL is, much to my relief. Here is a homework assignment she did outlining something that is good and bad at the same time. She chose the topic.

"What is good about cancer is that I learn new stuff about germs and blood. Which is pretty cool to me I guess. It is. It really is! What I don't like about cancer is getting my port poked (with the drawing of a port coming out of the letter o). It hurts some times and believe me....we've had some pretty close calls.

What do you expect from a girl whose front room has looked like a hospital for the past year. I'm glad she's feeling well enough to be curious again.

2009 - PUT IT OUT OF IT'S MISERY!!!

2010-01-08T21:05:00.000-08:00

This croup bug has really taken it's toll on all three kids. They are all recovering slowly but surely. Amanda is back on her chemo, but only at 50%. Her counts have struggled to rebound. Even on her steroids she seems too tired to really fight and scream much. She hasn't returned to school and must be wiped out because she's not begging to go back yet. I can't make up my mind when to send her back. I suppose she'll let us know when she's ready.

I can't help but think of the past year. Are we finally done with 2009? It has felt like such a bad dream that sometimes I can't tell if it's over yet or not. This past year has been so bitter/sweet that to recap it is not an easy task. There are parts that were so painful, dark, and difficult to get through that it's hard to even think about them. But I want to share what I have learned. Those dark places where you feel totally abandoned are meant to be. They are teaching tools. They are humbling moments. They are intensely painful, but you just have to endure them and learn to move on. I have noticed that during those moments you are pushed to the brink and when you think you cannot go on, the burden is lifted - even just slightly. And consistently the burden lifters have been our family and friends. I could easily lament about this past year - very easily! But staying positive means just accepting that times are tough, but knowing that they will get better. I'm often questioned how we are managing to get through. I'll show you how.

Santa helped reassure Amanda that she has been a good girl and gave her a bag of candy so big she could hardly carry it. She needed reassurance of how brave she has been.

Erin and her great sense of humor! She can be a challenge, but she's good at making me laugh.

Generous donations from friends and family. It reminds us of how much people care and has brought some much needed happiness to these two.

Endless help from family. I had to scramble to find help to go to clinic this week. I realized it was the first time and I knew that finding help would be easily. How fortunate we are to never have to worry that somebody can help us when we need it. Our parents provide the majority of that support. We are so fortunate for the endless hours that they devote to us.

(I'll work on getting more updated pictures of you mom - but I like this pre-cancer one best).

Aunts, uncles, and cousins that are always willing to spend time helping us entertain Amanda. When you are 8 and have cancer, the time passes very slowly. I have many people to thank for helping distract her from the boredom.

(Dayan - the family's future super athlete and only babysitter that will work for food)

(3D fun with uncle/aunt Rick and Carol. We are so glad they live so close and drop by so frequently)

And most important, God has seen us through and gently reminds us that it's because of these three beautiful people that we must keep pushing on each day.

Home Again

2009-12-28T17:33:00.000-08:00

Picture quality not the best, but the kleenex up the nose cracks me up.

Amanda came home this afternoon. She looked pretty miserable yesterday afternoon, but started perking up in the evening. The fluids and antibiotics seemed to kick in. She's still on the IV meds. We're happy to have them at home rather than in the hospital now that she is past the worst of it. She's still coughing a lot, but is happy and acting more like herself. It will be several more days of rest and recovery to get her blood counts back up. She'll start chemo again once she bounces back. We're glad it was only three days at Primary's.

Virtue and Vice

2009-12-27T13:25:00.000-08:00

I'm very glad that Amanda is in the hospital. I am much less worried now that she's here. She has been diagnosed with croup. It fortunately has not turned into pneumonia. That was our biggest concern. She was admitted because her immune system was dangerously low and she likely would have developed a serious bacterial infection. She's been taken off her chemotherapy and already her immune system is inching back up. The doctor thinks we can be released tomorrow. She'll be wiped out for a while. Scott stayed the night with her and he said she only slept one hour. She finally fell asleep on my shift. Erin has the same crud, but fortunately Will is OK. Caring for two sick kids and a nursing baby has it's challenges. But being here reminds me that the last time was much harder and that handling this is much easier now. Amanda picked up the bug from school. I don't want to send her back. But as my brother-in-law pointed out, I can't keep her in a bubble forever. Amanda is just too social, and she has been so much happier since she went back to school. A couple days of misery is the vice to allowing her some social freedom.

I had hoped to post a bunch of pictures about Christmas but was obviously side tracked a bit. I had this feeling that we'd end up at Primary's some time this week. I'm glad it was after Christmas and we were able to enjoy the holiday together. There are a lot of kids up here that did not get that luxury. We owe a big thank you to the mystery Santa that brought over a big bag of extra presents for our kids. It made Amanda's day. She was so excited about Christmas #2. It will give her plenty to do to keep her busy while she recuperates. We appreciate the efforts made to make her life happier and ours a little easier.

Blessings and Trials

2009-12-26T14:42:00.000-08:00

As I'm typing this Amanda is getting accessed and a blood draw at the ER here at Primary's. Its the day after Christmas and we weren't able to make it through the holidays without an extra trip to the hospital. As we've looked back over this year we've been looking more forward to having it behind us. Amanda is being very brave having to go through this experience yet again. It is another reminder of how blessed we have been during our trials this year. She has a bad cold and a fever. A good round of fluids and antibiotics should do the trick. That and a lot of nintendo gaming with dad.

Update. It looks like we'll be staying the night here. Not where anyone wants to spend their Christmas time off but at least we know Amanda will be watched over.

Another update. These cool new phones that Mary Ann got us allow us to update the blog from the hospital. Unfortunately we can't text or call from the super dead zone of cell service. Teri gets a cookie for responding the fatsest. Wow.

ANSWERS

2009-12-13T17:58:00.000-08:00

"I've got my hands on a miracle, and there's no way that you take it away."
- Foo Fighters

Amanda is settling down a bit and her health is fortunately very good right now. I suppose I should take a moment and divert attention from her to finalize the chapter to Will's health.

We finally have answers. We have known for a while, but wanted the chance to update our family first as he tested positive for a genetic condition that many other family members will test positive for as well. The condition is called Factor V Leiden. My first impression was, "huh?" Never heard of it, and yet, it's the most common genetic blood condition among Caucasians. It's a blood clotting disorder. The proteins in his blood do not function properly and are about 10 times more likely to clot than the normal population. It's a dominant Gene. Scott tested positive for it, Amanda tested positive for it, one of Scott's parents has it........you get the idea. It also explains why Amanda's port gets clotted so frequently and can be tricky to access.

Will inherited the mutated gene and developed a blood clot in his portal vein near his liver. Apparently fetus' are very high risk to clot with this condition. Tossing a mom with hyperemesis into the mix did not help. I always felt that my poor health contributed to his. It will never be proven, but I will always believe that. The clot cut off necessary circulation for him to grow properly and caused the umbilical cord to be abnormally long. This in turn strained his heart and caused it to enlarge. The enlarged heart strained his organs which decreased his amniotic fluid. The combination of the two are what nearly took his life. At some point the circulation improved.

Overall, the lack of blood supply and strain on his body caused his pancreas and liver to not have adequate reserves to function on their own when he was born. They are now working properly, his heart is healthy, and the clot is nearly gone. He's developing just like he should, just at a smaller size. We are so relieved to have answers and to have him alive. Factor V Leiden can be a very manageable health condition once you know you have it. The prognosis is very good.

There you have it. He is a miracle. I will forever believe that the prayers of many are what spared his life. He is meant to be a part of our family. I've started to realize lately that God hasn't taken many of our families challenges away despite a lot of asking. Instead, he's given us a great gift to help take our mind off hardships. When Will's health was poor every night I would pray to God and say, "Thy will be done." Hence his name. Our prayers were answered and God's Will is here!!!

Ahhhhh - I hate steroids

2009-12-11T16:51:00.000-08:00

As a mom, a quick venting session is needed. Steroids are no fun. I was told she'd be a little ornery for a few days a month during maintenance. That's an understatement! Its more like five torturous days involving a minimum of two hours a day of tantruming, three hours a day of moping, one hour of clinging, lots of whining, and going to school as an angel. And that's if we can get to school without everybody coming unglued as her yelling sets off Erin's. Amanda keeps telling me that she thinks she's on Santa's bad list because she's cried so much during treatment. Pretty heartbreaking. But if you saw one of her tantrums you might understand her logic. If she feels well enough tomorrow we'll let her visit him to clear things up.

I wanted to post a picture depicting all this drama but couldn't capture the moment in time. Amanda was screaming right next to Will and Erin was covering Will's ears to try and protect him. Here's the irony; he has ear infections and when I told Amanda about it she said that Erin's screaming must have caused it.

BIG DAY

2009-12-04T08:39:00.000-08:00

"It's not having what you want. It's wanting what you've got."
- Sheryl Crow

Amanda began school on Tuesday. After 8 long months she's finally back at school. Yeah!!!!
We arranged for her favorite Child Life Specialist from Primary's to come and do a presentation on cancer. The staff at Primary's are so good at what they do. Rachelle presented questions and information that I never would have thought of. Thank you Rachelle!!! Amanda showed off her colors of courage (the necklace she's wearing). Each bead represents a part of cancer treatment that she's completed. It really helps put into perspective how much she's done. Amanda's classmates were so responsive and curious. They are smart enough to understand what cancer is and young enough to be very non-judgemental. It's a great combination. Amanda was treated like a celebrity. The girls swarmed her at recess and all wanted to be her friend. However, she did come home and have a HUGE tantrum that lasted about an hour. I supposed she needed to decompress some stress. But since then she's been very happy and acting like herself again. School is wearing her out. We've had to up her bedtime and I still struggle to get her up in the morning. But she's sleeping better, which is a nice change. As a parent the adjustment has been hard. To go from total germ control and total care and now to send her to a place where I'm not there and kids eat their boogers gives me really bad vibes. But her teacher is awesome and is trying to follow all of the hand-washing and crowd avoidance protocols. Ironically, Erin and I have been really sick with a cold. Amanda's stayed healthy. She may fair better than expected. Regardless, seeing her so happy is making the risk worth it. She's finally where she wants to be.

Big sigh of relief

2009-11-28T10:19:00.000-08:00

Phew. We're done with last night's methotrexate dosing and Amanda actually did great - no headache or vomiting. I'm pleasantly surprised and hope that it stays that way. She's feeling great today and didn't wake up at all in the night (wish I could say the same for the other two). We may just get through this maintenance phase after all. My brain is a bit scattered lately, so I've got to jot down the RX recipe to remember for next week.

4:00 - start with lots of fluids

5:30 pm: 6-mp medication and Prevacid on empty stomach

6:00 pm: consumption of waffles or other bland food item (shouldn't be hard with my cooking lately)

8:00 pm: one Benadryl and one Zofran

8:30 pm: full dose (don't skimp) of Oxycodone and a small bowl of cereal.

9:30 pm: 8 Methotrexate pills

9:45 pm: listen to Amanda talk non-stop (narcotics bring out the social side to her)

10:00 pm: a good night's sleep for her - hopefully!

We'll see if that works again next week.

Giving and Receiving

2009-11-27T19:44:00.000-08:00

Our ward dropped off a pumpkin pie this week. I had to chuckle because last year I was relief society president and sat on the committee that decided who got the pies. Life can change rather quickly. I was grateful to be on the receiving end. Amanda had been begging me to make a pumpkin pie all week and I've been very preoccupied with setting up my upcoming business venture. Baking pies is low on the priority list right now. I am grateful for those that think of us, pray for us, and go out of their way to support us.

I'm typing this to relieve some anxiety. Amanda will take her Methotrexate within the hour. She takes it each Friday night. Last week was awful. She cried, vomited, and whimpered in her sleep until the dose wore off. Days like this I hate cancer. The worry and dread is almost as bad as dealing with side-effects. We'll try regulating some medications to knock her out so she doesn't notice. For the first time she is apprehensive about taking pills because of how they make her feel. I hope we can help her to be more comfortable or it's going to be a very long two years. But I'm coming to accept that cancer is full of a lot of uncomfortable things that you just have to toughen up and get used to.

Transitions

2009-11-19T20:54:00.000-08:00

A few years ago I worked with foster children, specifically between the transition of an abusive home to a foster home. Almost consistently among abused children there is a phenomenon. They get into a safe "normal" place, and yet they try to disrupt everything that is safe and normal about it. Lately I feel a strange sense of understanding this. I took the kids on some errands today. Something that we all do regularly and think nothing of it, right? It felt very strange. I haven't done it for almost a year. I've either been too ill to go or have needed a babysitter. I felt like we belonged back at home, the hospital, among medical equipment, just somewhere other than normal society. Although I have no desire for Amanda to have to go back through the tough first six months of treatment, I still have this feeling that it is where we are supposed to belong. I've spent the last six months focused on the intense phase of leukemia and the daily task of asking myself and God, "how do I get through this?" I could not see past November. Every minute counts so heavily during cancer. Now that we are here I find myself happier, but feeling very out of place. It's a peculiar transition. Now that we know cancer, we can never overlook it. I constantly think of those recently diagnosed or in the toughest parts of their treatments. My heart aches for them because I now know what it is like. Every time we go to Primary's I look at the windows of the oncology unit and wonder who is in our room, who is fighting the fight, who is miserable. I often hear parents of cancer survivors say, "she never complained." I can say, "boy did she ever complain! But, she easily forgot and moved on." I suppose I need to start following Amanda's example.
She will transition back to school on December 1st. She is starting to act more and more like herself again. Falling asleep without drama is still an issue, but that will just take time. She is going to emerge from this a stronger person both physically and emotionally. I can finally see it. She will go back to "normal" without any hesitation or regrets. I am eager to get there with her.

MAINTENANCE

2009-11-14T20:24:00.000-08:00

It's hard to believe, but we are finally here. The beloved maintenance phase of treatment. The best way to describe maintenance is to compare it to a tree. If you cut down a tree, the roots are still there and the tree will grow back, even if you can't see the tree anymore. Leukemia ALL is the same. Every test available would indicate that she is cancer free. Maintenance is a two year, steady course of mostly oral drugs that will kill all the cancer roots. Amanda began the phase on Wednesday. Everybody at clinic was cheering for her. I have to admit, deep down I wasn't. Cheering about two more years of treatment and fearing relapse for years to come doesn't seem like anything to get excited about. What there is to cheer is that her treatments are fewer and less intense. She began the course with a lumbar puncture and Ara-C instead of Methotrexate. They are going to try it for a while, but she eventually needs to go back on the medication treatment course. She was still pretty miserable for a good 24 hours and hooked up to an IV pump for a few days, but she does better on the Ara-C. We are hoping that she will tolerate the medication better when her LP's are spaced apart more. They will be every three months now. yeah!

Her hair is starting to come back in. It looks blonder than normal. Cancer treatment can permanently change the color and texture of hair, so we'll see what we get. It should not fall out anymore. She is sleeping better at night thanks to a good psychologist and some occasional benadryl. She's on steroids again. It's maddening - 5 days every month. It's going to be rough because steroids make her sooooooo MOODY!!! She is close to returning to school. We have to wait and make sure that her counts don't drop too much during the first two weeks while they regulate her medication dosing. Her counts have to stay in a therapeutic range - not too low, not too high. We are looking at having her transition back around the first of December. She can't wait! She is getting very lonely again. I want her to be out and about more, but everywhere we turn people are sick. Erin ran a fever yesterday. We cannot avoid it despite our best efforts. Loneliness verses illness - it's going to be a long two year battle!

HAVING FUN AND WORKING HARD

2009-11-06T07:42:00.000-08:00

I think our family had the best Halloween ever. Amanda wanted to be a superhero (which I thought was so cute and appropriate), but we couldn't find a costume that fit in time. Being a cat of some kind is always a favorite for her. She skipped around the neighborhood faster than we could keep up and she was surrounded by friends and family. It was so great to have her so happy!!!

Clinic was postponed this week because she didn't make counts - barely. We are all eager to have her return to school, so this is frustrating. But we need her well enough to be able to start her final treatment round. We took advantage of meeting with the psychologist. He thinks she's doing really well despite sleep problems and a whole lot of mood swings. As he put it, she's just "decompressing" from all the changes and is a very dramatic child on top of it. She really has done amazingly well. Getting poked with needles and missing school have been the worst part for her. She complains a lot when she's in pain or sick, but moves on and forgets about it when she feels better. That encourages me that she won't be too traumatized when this is all said and done. In the mean time, she is adjusting to less video game time and more homework time. Her teacher is meeting with her and assigning projects to get her up to speed with the class.

I returned to work this week. If ever there was a time to quit and stay home, it is right now. And yet, if ever there was a time to work, it's right now. I only mention work because I've had a lot of questions about my impending lay-off. I appreciate the concern. I've worked for the State of Utah for 12 years as a social worker, most of which part time in disability services. As of January, DSPD (the division I work for) is privatizing all of it's services. I am actually excited to leave and set up my own company. The struggle is that I carry the health insurance. It's not a great time to transition insurance coverage because we've been told that we have the absolute best coverage for her type of cancer. Fortunately we have other insurance options, it's just not as ideal as what we've been used to and it adds to an already long list of challenges. I am amazed at how well the timing of everything is working out for us. Sometimes so well that I have to remind myself that God gave us these challenges, but he is giving us a way to get through it. I know in a few years this transition will better our lives. Just getting there is the hard part. So if the blogging gets sparse, things are likely just fine. We're just frantically finishing our basement, getting a company put together, and still attending a lot of medical and school appointments.

Easter in October

2009-10-28T09:39:00.000-07:00

"I have to admit it's getting better....." -The Beatles

We spent the weekend at my family's annual condo in the mountains trip. Amanda has been beyond excited. She even told me she'd be brave and sleep through the night there, but not at home, which she's lived up to. She had a long list of everything she planned to do with her cousins. Mission accomplished! Her most important task was the Easter egg hunt. My mom has one each spring and it was canceled several times because of Amanda's health. Don't promise Amanda anything that you don't plan to deliver because she has a very sharp memory and is very persistent at getting what was promised to her! She reminded grandma all summer about the hunt, and waiting for next year was not an option. She is finally healthy enough to be around more people, so we planned it for this weekend. It didn't take long to find all the eggs. I don't think she's even touched the candy inside. Having fun was far more important. Needless to say, she had a great weekend. She was sad to leave. I reminded her that we'll be back next year. She said, "But that's three months away!"

These eggs cashed out!

We have been surprised at what a good baby Will is. We are not used to a happy baby that you can pack around with little fuss. He's up to 7 lbs. 4 oz - at two months he's still smaller than the girls birth weight. But he's plumping up quickly. He's finally learned how to nurse (yeah!!!) which is great because the doctor's don't want him on formula. We are still waiting for genetic tests specific to blood disorders. He had another ultrasound last week and his blood clot is getting smaller. We'll follow-up in three months with the hope that it will be gone on it's own. The doctor said blood thinners will not help at this point. He finished up his "liver in a bottle" medicine and he goes to see the GI doctor next week with the hope that his liver is functioning properly. Overall, he's doing great. He looks and acts like a baby his age should. He's proving to be a delightful addition to the family. And he settles the debate - boys are EASIER than girls!!!!!

I'm living with a bunch of insomniacs!!!

2009-10-23T19:49:00.000-07:00

I have to thank my husband and parents for helping out so much while I was busy bonding with the bathroom. Isolating myself at my parents was like a hotel stay with room service and everything. I wish I'd felt well enough to fully enjoy it. My dad made sure to double check that I hadn't separated from my husband with plans to move in. I think the effort has paid off as nobody else has gotten sick.

Being among the living again has reminded me how it was that I got so sick in the first place - a whole lot of stress and sleep deprivation. Will gets me up, but Amanda and Erin keep me up. Erin has never slept well and I'm used to her night tantrums. But Amanda has developed horrible insomnia ever since her last steroid treatment several weeks ago. She is scared of being alone. Granted, I feel for her and all she's been through, but we can't take much more of it. So Amanda and I spent over an hour talking with the oncology psychologist last week. The diagnosis is that she's "socially starved." She's not socializing enough and he wants her back in school asap, but her counts are still too low. So, it's a lot of tough love for now. She was up for over three hours the other night trying all her tricks to get somebody to stay in the room with her. As the psychologist put is, "kids are like slot machines. As soon as they know when it will pay out, they keep pulling the handle to get there." Although she is driving me batty with her attempts, she is at least feeling really good right now. The second half of her intense treatment was surprisingly manageable. She was really ornery and lethargic last week. She ended up needing a double blood transfusion. I mentally thanked whoever donated her blood. I wish they could see her bounce back to life. She's done really well since then, but her immune system continues to be dangerously low. She is officially done with her six months of intensive treatment and is now in "count recovery" mode. We'll go back the first part of November to begin her two year maintenance phase. We are hoping to have her transition back to school after that. The bad flu season is painful timing. But taking our chances will likely be the trade-off for a good night's sleep for everybody.

At least somebody's sleeping around here.

“You tried your best and failed miserably. The lesson is: never try.”

2009-10-19T15:01:00.001-07:00

Sometimes in life it is unfortunate that you can try your best and still your best isn't good enough. It is a hard pill to swallow. We've tried very hard to all stay healthy while Amanda is going through chemo and has some of the lowest counts she's ever had. We have to be very careful during this phase as we've tried throughout the entire treatment. We sanitize everything, sometimes more than once. We don't go anywhere we don't have to and we stay away from crowds. There are few people invited over to the house and there are many restrictions about their health and who they have been around. There is a lot of flu stuff out there and we don't want any. We try and we try, but Mary Ann has found herself banned from the house yesterday.

As hard as she's tried, and she's more careful than all of us, she came down with something nasty yesterday morning. She has been so sleep deprived lately that it is no wonder. She was throwing up through the morning yesterday so she locked herself in her room until she felt well enough to pack her and Will up and take her to her parents' house. It is very hard for me, Erin, and Amanda to have Mary Ann and Will out of the house. They are handling it very well.

I am often amazed at how well both Amanda and Erin understand these things when it comes to not being able to risk getting sick. Today I took the day off and took the girls out for lunch to get them out of the house. We went to a park for a little while and had to steer clear of all other kids and only stay for a little while. The girls have been so cooped up that they need to get some air and play outside when they can. I must have gone through half a bottle of hand sanitizer following them around squirting them every 5 minutes.

After the park I talked the girls into taking a small nature walk. And I do mean small. I'm feeling very cooped up as well as it seems the only place I go is to work and back home. It felt good to get out and walk, however, you can only go as far and fast as a 3 year old will allow you. I wanted to get out and hike through the wooded area above Kaysville but soon realized that where I can tromp through the girls could not. It was a very nice warm day and I had more energy to get out than the girls. We ended just walking a little ways down a trail and the girls were collecting rocks down the path.

We are getting close to the maintenance phase of Amanda's chemo and having her get back to school and more normalcy. We have to be very careful over the next few weeks that we don't have any setbacks. Hopefully it won't be too long of a separation from Mary Ann and Will and she just has a quick bug that the rest of us can stay away from.

For those of you Simpson's fans out there, you'll recognize the quote. It is how we feel sometimes.

Never try sound bite Homer Simpson sound bites

HUMILITY

2009-10-08T07:51:00.001-07:00

When Amanda was diagnosed with cancer I hoped to find another girl her age for her to meet that was going through cancer too. I knew it would help her not feel so alone. Over the past five months I've looked for that friend at clinic, but have not found her as most cancer kids are young boys and older girls. This weekend there was an obituary for a girl her age that died of liver cancer. It broke my heart. How hard it would be to go through this only to lose your child at the end. I know that Amanda's prognosis is good and we know she will survive. This was a gentle reminder for me that she is meant to be here. It has been humbling for me to recognize that it is in God's hands and that we have not one, but two children spared this year. Five months ago Will's heart was so large it took up half his chest cavity, he was supposed to have suffocated from lack of amniotic fluid, and most of his organs were under stress. How grateful I am that God still lets me hug my kids at the end of the day. Humility is hard to explain, but you recognize it when it is granted upon you.

Amanda continues with her intensive treatment. Yesterday was a long treatment day with the most medications she's had at one time. Both Scott and I thought she'd have to be carried out of the car. To our surprise she's happy, talkative, and acting like herself. She had the different medication with her lumbar puncture. We both believe she is responding much better to this medication than the last. How I wish we would have discovered this sooner. It's sad to think that her treatment was more difficult than needed, but we can't change that. I'm just grateful that she looks so good today and hope that this med continues to be better.

Another Week

2009-09-30T10:32:00.000-07:00

"Stuck in a world of isolation, while the ivy grows over the door"
......pink floyd

Amanda's immune system is terribly low. Both she and Erin grow weary of being so isolated from friends and family, but it continues to be very necessary. Amanda's too suppressed to have clinic today, so we wait another week. I was looking forward to getting this next round over with. But, her body is telling us it needs a break. She is not not bouncing back as quickly and it's obvious that her body is getting tired. Having another week to build up her strength will be very good for her. That just means a lot of TV watching. I'd prefer boredom over the misery and pain of last week.
She still has some painful mouth sores. She looked like she had her wisdom teeth out she was so swollen this week. Her hair is falling out again. She continues to have mood swings and crave pickles (vlasic are the best!). She is weak and looks worn out. Our understanding of cancer is so much greater. It is something that cannot be described in a blog. Maybe it's the combination of cancer, sleep deprivation, and a newborn, but the outside world feels strangely unfamiliar right now.

Rough Week

2009-09-24T20:42:00.000-07:00

As a family, we have reached a nearly unbearable level of exhaustion. The combination of so much for so long and a lot of sleep deprivation is taking it's toll. I am truly grateful for family and prayer, the two things that consistently get us through the tough times.

Amanda is not doing well. She has been on a very high level of steroids this past week. She has been in a lot of pain. She started with the mouth sores, nausea, intestinal ulcers, joint pain, skin itching, insomnia, and bone pain. All of on top of the already ornery mood swings that steroids bring and a child that has a very low pain and discomfort tolerance. She is on round the clock narcotics to keep her comfortable until the steroids wear off. She's cried a lot this week. We've had help from family daily. My mom jokes that at times we really need four adults here to keep things going. It's sadly true as Amanda is proving to be far more work than her newborn brother and emotionally explosive sister combined. Amanda will have this week to recover and we're back to two weeks of intense treatment again. Her doctor decided to take her off Methotrexate and try another drug (Hooray - I hope). So perhaps she may do better. By the end of this round we will know what reaction she has to each drug. Knowing how she will react makes the next two years seem manageable. Her immune system is at it's lowest. It's interesting how quickly she declines, but how quickly she rebounds as well. We are encouraged by her doctors that she can start school after Halloween. Having this to look forward to is getting her through this last phase.

Will is up to 5 lbs. 6 oz. Gradually we are working towards a clean bill of health for him. His blood clot (officially diagnosed as a portal vein thrombosis) is getting smaller. We are doing a wait and see approach and very likely will not need to treat it. We follow up again in a month. We are still waiting for genetic testing to rule out a blood clotting disorder, but so far everything is coming back negative and doesn't appear to be a problem. The medication to detox his liver is working well, other than increased colic, and we'll follow-up with the GI doctor in a few weeks. None of the specialist doctor's we're involved with are overly concerned about his current health issues, which is great. I can tell by the decrease in medical appointments and their reactions that Will is doing well, other than being a small little guy.

Blogging - a luxury

2009-09-15T11:15:00.000-07:00

It's amazing to me that after having a baby the following things are luxury items; eating, sleeping, putting on make-up, and showering. So naturally, blogging is at the bottom of the list as I would prefer to smell decent.

Amanda's health has been all over the place with this round of treatment. We have been warned that this is the hardest and most dangerous round (if she gets sick). I'm not certain that it's the hardest. She is having moments where she feels great and the IV drugs are manageable. The leg injections (which we are thankfully done with) were not pleasant and the side effects lingered. But once again, she had a terrible reaction to the methotrexate lumbar puncture. I can't describe the challenge of witnessing your child scream in uncontrollable headache pain and vomiting. I just cried. She did so well initially afterwards that we didn't follow-up with IV fluids at home. It didn't hit until the next day. I will not repeat that mistake again. Once again I am grateful for good insurance coverage and doctors that can get what's needed ordered after hours. I'm also very grateful for family, especially our mother's who are devoting so much time to helping us right now. Amanda naturally bounced back after a good round of IV anti-nausea meds, lots of IV hydration, and forbidden IB profen. I absolutely dread future lumbar punctures. We have one again in two weeks and then they are every three months. I'll talk to her ongoing doctor this week about it. But so far all the other doctors remind me that it wouldn't be wise to risk curing her cancer when they know what works. I painfully agree.

Will, in my opinion, is doing well. However, his pediatrician pointed out that he has a lot of health "quirks" going on and they concern her. We had four doctor's appointments last week between Will and Amanda, three this week, and I think two next week. It's very tiring. Fortunately primary's is working with us to try and get everything scheduled on similar days. The GI doctor wasn't very concerned about his liver, which is good. Will started on a medication to help clear out the remaining billiruben. And ironically, he has an appointment with Amanda's oncology doctor tomorrow, since she specializes in hematology as well. We will hopefully get some answers about the blood clot. He's been a bit more cranky with the meds and schedule chaos. But he's growing (up to a whole 5 lbs now) and is a great addition to our family.

Amanda's had a harder time adjusting to will being home than expected. I guess after five months of intense attention from mom her nose has been pressed in a bit. Erin, on the other hand, must have been more neglected than thought. She doesn't seem phased by the attention her brother gets. I guess it's more important to her to have a mom that is home and no longer sick. I'm still struggling to adjust to all the stress and chaos, but cannot describe what a relief it is to no longer be physically ill. Caring for a cancer patient while ill yourself was an extremely difficult challenge that I hope to never experience again.

Better, I think....

2009-09-03T19:19:00.000-07:00

AMANDA; Today started Delayed Intensification - round 4 of 5 for Chemo. It lasts 2 months. I have been dreading it. It's a lot of heavy medications with lots of side-effects. However, we had a very long discussion with the attending physician today. Many of the drugs are the same or similar to what she has received in the past, so side-effects should be somewhat predictable. We will take a wait and see approach to the Methotrexate. So far, she is doing better on it. The break seems to have helped. She is completely wiped out right now, but we are getting used to that on heavy treatment days. She's getting much better at recognizing that chemo makes her sick and that she needs to just rest.

WILL; While Amanda was doing her chemo, Will had an ultrasound on his liver. The results showed a blood clot and calcification of the vein leading to his liver. Fortunately the doctor asked the technician to look more closely at which vein it was. They determined that it was the umbilical artery. It is supposed to close off after birth which means it should not pose a permanent problem for him. Actually, the doctor was very brief with us and showed no real concern for the condition. I'm not even sure if I completely understand the diagnosis. We will follow-up with his pediatrician tomorrow. She'll determine if it's an ongoing issue for him. It's a huge relief.

ERIN; I have to post a comment so that she doesn't resent me ten years from now for leaving her out. She goes to her allergist next month to hopefully give her the all clear from food allergies. She seems less lactose intolerant and has worked up to yogurt (with a lot of Lactaid). She's made a lot of progress with her fine motor skills. Most of our "home schooling" this past summer was devoted to her fine motor skills (thanks to those who had home schooling tips for us). She's still having a lot of behavior problems. But I don't blame her. It's been a rough year. Two steps forward, one step back has become the norm for our family. At least we are headed in the right direction.

Miracle

2009-09-01T21:41:00.000-07:00

We have to thank the many friends and family that have wished us well, sent along gifts, and left encouraging comments. We cannot keep up with it all. But can say that our little boy is a miracle as a result of many prayers offered on his behalf. He keeps having problems that resolve before doctors can figure out what was causing the problem to begin with. The NICU stay was not pleasant, but easier compared to the many things we've gone through this year. Poor Will had his feet pricked every three hours for several days. His poor heals look like hamburger. And his veins were very poor for IV's, so he was constantly getting poked with needles. He's a very good baby to have tolerated what he did. He's much happier now.

Just a quick update, we are home, at least for two days. We had some questionable results on a liver ultrasound regarding a possible blood clot. Primary Children's wants to do their own ultra sound. McKay Dee Hospital was so good to us. The staff were so concerned about the health of both our children. They went out of their way to make sure that we can take Will down to Primary's during Amanda's Chemo. As a mom, I am frightened for both. They present many unknowns. But, so far I've seen time and time again that his health, her health, and my health have all seemed to coordinate in a way that has made things possible. Fortunately, I am feeling much better now that I am not pregnant. Which is good because the shock of coming home to three children was a bit overwhelming and I am going to need good health to keep up. Amanda was extremely excited to finally get to meet her baby brother. My prayers have been answered as she has had very good health during my absence and tolerated our week long separation well.

Homecoming

2009-08-31T21:55:00.000-07:00

Things are looking much better. I won't go into all of the details but it looks like Mary Ann and Will can finally come home tomorrow. That means the girls finally get to meet their new baby brother after a week. Again, I won't go into the detail tonight, but we have an appointment at Primary's for Will and Amanda on Thursday. We are all very excited to get him home and I know many others are excited to finally see him as well. We will update more when we finally get him home.

Quick Update on Will

2009-08-28T06:34:00.000-07:00

I have just a few minutes before having to get back up to the hospital with Mary Ann and check in on the girls at Grandma's. I thought I'd try a very quick update. Mary Ann was released yesterday but they were able to find an unused room in the hospital to let her stay in so she could stay close for feedings. The room is in an unused part of the hospital and very quiet so we decided to bring the girls over and let them spend some time with Mom which was nice. Will go moved yesterday, too. From NICU room 1 to NICU room 2. That's about 40 feet tops. But it is a small sign of improvement. He still hasn't been able to get his glucose levels under control on his own so they still have him on IV's and added a feeding tube. He also became jaundiced so he's under the fry warmer lamps. Poor guy. He had the shakes last night from messed up sugar levels and was just jittery. But on the other side of things it all looks good. Its just a matter of getting him the food and supplements he needs to get him bigger and stronger and then feeding on his own and things should work themselves out. Thank you to everyone who has prayed to get him here and continue to pray on his behalf.

Baby Brother

2009-08-26T06:57:00.000-07:00

He made it. He truly is a miracle. I won't go into all of the details of why there were so many doubts about him getting here. I will just tell you that our family is blessed, excited, and grateful to have him here.

Weighing in at just 4 lbs 14 oz and 18 inches, Will is a tiny guy. At about 4:30 pm August 25th he was brought into this world whether he was ready or not. He looks very good until the blood result came back with a glucose level of 12. We didn't know what that meant either until they said they like to see that at least a 60. So he's in the NICU for a little while so they can stabilize him and watch him for a bit. His levels were stable late last night and seemed to be doing just fine.

He's much quieter than his sisters so far. Mom's doing fine. Things went 100 times better than the last delivery. The girls won't be able to see their brother for a couple of days until Will is out of the NICU since they won't let children in. Amanda is very excited for her baby brother, though. Erin, well we'll see if she truly gets what's going on.

MRI Results

2009-08-21T17:16:00.000-07:00

Amanda handled her MRI really well. They bribed her with all kinds of toys and prizes. The anxiety leading up was far worse than the event itself and I think she's starting to getting more used to procedures now.
The radiologist read the scan very quickly and the doctor came to tell us the results before Amanda even woke up. As we have said before, we are very impressed with Primary's and their ability to be so organized. Amanda's scan showed "no toxicity to the brain" from the Methotrexate. Everything else in the scan looked good as well. It is a big relief. It is still obvious that she is not tolerating the drug well and we still have the issue of what to do with future doses. She is done with the heaviest dosing regiment, but will have another dose in her lumbar puncture in two weeks. The doctor felt this is long enough to give her body a break and we will have a "see as we go" approach to determine if another drug needs to be substituted. He was not terribly concerned about another "incident" as the drug has had time to decrease in her system. We'll never know for sure if it was a seizure, but we do know that the high level of Methotrexate caused it. We just need to exercise good judgement with her, trust the doctors, and take her back in if any problems continue. We are looking forward to a few days of rest and recovery from a very stressful week.

MRI

2009-08-20T18:46:00.000-07:00

Amanda had clinic today. Most of our time was spent talking with the doctor trying to figure out what happened this past week and what to do about it. We are left not knowing if it was a seizure or passing out. Aside from this the doctor was concerned about the extensive headaches she gets after treatment and how they are increasing in rhythm with the Methotrexate drug. "This treatment round is usually a break for people" was his comment. She had a good week around the beginning, but she is progressively struggling the more they increase the drug. So the solution to figure out how much the drug is affecting her is to do an MRI tomorrow. The nice thing about being an oncology patient is that you get in for special testing within hours when it takes others weeks. The MRI is needed because Methotrexate often shows changes on the brain when people become symptomatic like Amanda. If there are problems then her treatment will need to be regulated in the future because this drug is taken on a regular basis for the two year maintenance process. For today, he skipped the drug despite it needing to be the largest dose in the treatment regiment. Because she is in the best possible recovery tract, he felt we have some wiggle room. In my mind I was cheering while Amanda was hysterically crying about having to do another MRI. For me it means her being much stronger and healthy for when the baby is born. Unfortunate for her, MRI's are the most dreaded of all treatments because of the isolation and weird noises. But, this time she will be sedated. She's still pretty upset about it though.

Amid all this, the baby has miraculously stayed put. My doctor agreed to induce me next Tuesday instead of the following week. It seems a good compromise between Amanda's next treatment and the baby's healthy growing time. I'll be 38 weeks and have never made it to 39 anyway. I hope it will be what is best for both his health and Amanda's.

AMBULANCE

2009-08-19T12:08:00.000-07:00

Our many neighbors and kind Ward members deserve an explanation for the commotion at our home yesterday.

Amanda has struggled with really bad headaches, mood swings, and hasn't been sleeping or eating as well since her last treatment. She seemed to turn around yesterday and we arranged a play date with her cousin. My sister had stuck around, fortunately, and after an hour or so of playtime we both found Amanda unconscious on the kitchen floor. From other experiences I can handle first aid for passing out (people usually come around pretty quickly), concussions (which Amanda's had a few), and seizures. The problem was that I couldn't figure out what was going on. Amanda would not wake up, we didn't hear her fall, we didn't know how long she was out, she didn't appear to have hit her head, and she's a medically fragile kid right now which created an entire list of fears in my head as a mother. Paramedics couldn't get her to wake up either. She could have been out for over 10 minutes. When she did come to, she was hysterical and incoherent until they loaded her up and we were on the road to Primary's. She just remembers riding her stick horse, feeling dizzy, a bad dream, and then being in the ambulance.

She is currently home and doing fine; just physically tired and emotionally tired from life not being fun anymore. A bunch of tests were run with no conclusive answers. I talked with the Oncology clinic today and we are of the opinion that it likely was a seizure. Severe headaches and seizures are a rare side-effect of one of the IV drugs she is currently on. So we plan to involve somebody from Neurology at our clinic visit tomorrow. We're not sure what the solution will be.

It was a very traumatizing experience. We are very tired. We keep praying that I don't go into labor in the middle of all of this. She needs to be more stable before the baby comes. We are trying to hang in there and just keep praying that it all works out. I've decided that's the best thing you can do when you have no control over your outcomes in life.

Routine

2009-08-14T16:12:00.000-07:00

Amanda made counts for her treatment on Monday. It actually felt very routine. Check in, blood draw, wait for counts, talk with the medical staff, go to RTU, recovery room, finish off with chemo, get that pain medicine in her before we hit the road, and get the IV hydration pack whirling as quickly as possible. I think we have finally figured out a better routine as her recovery is proving to be more manageable. It still is taking her several days to bounce back, I've figured out she needs the hydration pack an extra day longer, and the pain/nausea meds are needed for a few days or her head is buried in the vomit bowel with a huge headache. It's not easy, but she still claims that getting her port accessed is the worst part to her because it involves a needle. We did have a huge melt-down this week about being lonely. And she's been a lot more lethargic than usual after this treatment. The tough parts are expected.

As for our baby, he is doing so well that the doctor wants him to cook two more weeks. That's a good thing because our next chemo date falls on what was supposed to be his birthday. I have no doubt he's just going to come on his own rather soon as all the impending labor signs are looming. Amanda is getting very excited, but clingy as I know she is anxious about this big change. Overall her health is strong enough for me to feel O.K. about leaving her care up to Dad and extended family for a while. My blogging may get more sparse, but I plan to update about any changes.

I'm overdue for promised pictures. The top picture is Amanda playing with her cousin. Sienneh was a good sport about wearing the mask while Amanda's ANC was really low. They are both so much happier when they get to spend time together!

The hydration pack is quite heavy. I still have a knot in my back from mine. Amanda came up with the solution to use a wagon. Here's Erin chasing behind as Amanda maneuvers through the house. Wish I had thought of using one.

Keeping Amanda and Erin busy has proven to be a challenge for me in my diminished energy state. The solution; put Erin's in charge of all housework :)

Much to my surprise, Amanda's hair is growing back in and she has no mouth sores as anticipated. Even though she has been completely worn out all week and has side effects I didn't expect, I left clinic feeling fortunate that she is not as sick as some of the other kids we see there. I'm very fortunate to have these two little girls!!! They have both proven to be very challenging, but these smiles remind me why it's worth it.

Quick Update

2009-08-05T12:36:00.000-07:00

I am so happy to say that Amanda is doing GREAT! Her hair is even growing in, much to my surprise. The medication side-effects seems to be calming down a bit right now. The social isolation still gets to her and we invited her cousin over to play today out of desperation - with the mask being a requirement. Amanda and I agreed that she should not have to wear a mask in her own home, so it is the responsibility of our healthy guests when counts are dangerously low. Fortunately my niece will do things for me that she won't for her mother (sorry Jenny, but it's true). It's amazing the difference play time with a friend makes.

We are down to the last 15 days of the pregnancy. With each pregnancy I get excited when the expiration date on the milk exceeds my due date. My frantic nesting has been replaced with a lot of fatigue, discomfort, and fluid retention. But I will gladly take it over the hyperemesis, which fortunately continues to improve. I've adjusted to drinking without my PICC. I've had several questions why it was removed. I'm certain I have a clot, or clots, in my arm. So, I'm on an aspirin regiment (again). Oh the joys of pregnancy! I look forward to just focusing on my kids again and not so much my own health.

I promise more pictures soon. Our memory card ran out and we just got the new one. I know words are more boring than pictures, so I appreciate those of you that take the time to actually read how we are all doing.

The Difference a Good Doctor Makes

2009-08-01T16:16:00.000-07:00

Amanda surprisingly made counts for her treatment Thursday (barely). I was very nervous about it and spoke up to the physician assistant about the problems with the last treatment round. The response was to just give her the nausea medication, which we did last time, and then he ordered a different nausea med that doesn't typically work as well. You should order what works best for the patient, not what med is your favorite (my medical Arch Nemesis list begins). Fortunately, the doctor has the final say so and I am very happy with Amanda's physician, Dr. Bruggers, who changed the order when I made the request. If I were to choose a doctor based on clinic visits, she wouldn't be my choice. She's a bit quick and sometimes prickly. But having worked with her closely during out diagnosis phase she proved to be one of the most competent doctors I've ever met. She is so confident of Amanda's recovery that I often replay in my mind her optimism in telling us what the outcome is expected to be. The best part about her is that she does not tolerate patient discomfort. She goes out of her way to find a solution. Even when Amanda was hospitalized, she chewed out a nurse when she saw how black and blue Amanda's arms were from endless blood draws. She knew there was a more comfortable way to get what was needed and she made sure it happened. So for clinic, Amanda was given a higher dose of the better nausea medication, a strict medication regiment to keep up on the nausea/pain, and home IV fluids for a few days. Whatever Dr. Bruggers did different worked and I hope it will continue the next few rounds. Amanda of course came home feeling ill, but she was able to tolerate the pain medication before the headache and body aches exploded. We avoided the extreme pain/nausea cycle. Amanda was even riding her scooter the next day, much to my surprise. I'm much more optimistic that she can handle the next two treatment rounds. I continue to pray that she won't be miserable while I'm away from her.

She's still struggling with bouts of nausea and is hooked up on IV fluids as we speak. Last night we were both up at 4:30 am with nausea. We both enjoyed our Zofran medication (God's gift to the nauseated), a bowl of cereal (the must have diet for the nauseated), and talked about ports and PICC lines. Not your typical mother-daughter bonding activity. But it makes me chuckle that this feels like a normal thing to do now.

Making Counts

2009-07-28T12:36:00.000-07:00

We're continuing to learn all kinds of slang medical lingo. Making counts means that Amanda's blood counts (WBC, ANC, HCT, Platlets - more lingo) have to be at a certain number to move forward with more chemo. Her ANC, immune system, was too low yesterday and she didn't make counts. In fact, it is 0.3, the lowest she's ever been. She has virtually no immune system right now which makes me quite nervous. We go back to clinic Thursday. If her counts don't go high enough she will only have the Vincristine medication and the dosing on the other med gets all shifted around. It is all so complex. I continue to be so amazed by the smallest details of cancer management that somebody has learned through trial and error. The unfortunate thing is that this completely throws off our schedule for when the baby will be induced. I asked the nurse if we can count on any schedule for next month. She laughed and said that we chose the worst possible phase of treatment to have any predictability. This doesn't describe chemo treatment as much as my life right now!

The great thing about additional time between treatment means that Amanda feels better, gets stronger, eats more, runs around more, and is building up her strength. It also means less stress for her. I've noticed a real change in her maturity level over the past few weeks. I think she has largely accepted what she must deal with and is coping with it as best she can. She's not as sad about what she cannot do and is trying to find more creative ways to be happy and entertain herself. We are now three months into this. We are never fully prepared for the hard days and they are always a big setback. But overall, I think we are all adjusting and finding ways to make our lives meaningful right now.

Baby

2009-07-24T17:21:00.000-07:00

Amanda is stable right now. She's pale, weak, and looks like a cancer patient should. She spends most her time doing sedentary activities. There are still many highs and lows all throughout the day, both emotionally and physically. I have found that talking about the baby keeps us both focused and upbeat. She is very excited about him coming and I know she wants people to be excited about him too. For those interested, here's an update.

Two months ago a funeral looked more probable than a homecoming. I think many prayers have benefited him, but I am still cautiously optimistic about every baby item I organize and acquire. With each one of my specialist appointments I am reminded that his progress has not been normal nor expected. We don't have a clean bill of health yet. He's still a month behind on his growth, but is growing at his own steady pace. His heart is still slightly enlarged, but his cardiologist thinks it is not a problem. It is just "working harder than normal" for some unknown reason. She thinks it's pregnancy related and will get better when he's born. He is missing one artery in his umbilical cord, which may or may not be contributing to the heart condition. We may never know what caused all his problems, or what has caused them to resolve. It's still a high risk pregnancy which means a lot of non-stress tests, doctor's appointments, and many ultra-sounds (nestled between chemo treatments, home health - welcome to our crazy medical lifestyle!!). He needs to come out as soon as he's full term. We have Aug 20th scheduled as the day to come, but will adjust it around Amanda's chemo treatments. My doctor's have been so supportive of her and our situation. This is the plan unless her treatment schedule changes, he goes into distress, or his growth slows down. I think we can make it - just one day at a time right now! We are entering a lot of scary unknowns, but I have known two things for a while.

1. He will come when Amanda is well enough for me to be away from her.
2. One of the reason's he's coming is to help Amanda.

Bouncing Back

2009-07-21T08:10:00.000-07:00

Two things are notable about this picture. First, after four days of being quite ill, Amanda finally felt well enough to leave the house. I don't anticipate her getting out as much in the next two months due to the medication side effects, so seeing her go for a short walk is uplifting. I hate starting new treatment rounds because it seems like quite a random process of waiting and seeing which unpleasantness you will get struck with. When they give you the cancer treatment handout it lists all the medications and all the potential side-effects. Various medications range from just a few side effects to upwards of 20. I don't' understand why she has hardly any side-effects to Vincristine, but seems to be racking up some bad ones for Methotrexate. So it goes. Fortunately, the intense nausea/vomiting, and pain has subsided. It lasted a solid 48 hours. Right now she has no appetite, excessive thirst, her eyes are starting to swell up and water, and she doesn't have a lot of energy. These are manageable. Unfortunately she is the princess and the pea kind of kid and makes mountains out of molehills when it comes to anything out of the ordinary with her body. She still puts a band aid on everything that's uncomfortable. This personality trait doesn't help much. But it is a relief to see that the intense side effects have the potential to slow down and give her somewhat of a break between treatments. It gives me a chance to catch up on my sanity.

The second thing that is unusual about this picture is that Erin and Amanda are calmly sitting this close together. We even caught them resting their heads on each other. Erin has had so many behavior and sleep problems, from food allergies and what's thought to be a neuro-processing disorder, that it has been difficult for Amanda to tolerate her. As her early intervention team put it, "Erin's too smart and wants to take over the world." Combine that with another head strong child and you are in for some problems. Over the past few weeks they have accepted the loss of interacting with others and are getting along better than ever. I know it's just by default, but it's been good for them to learn to like each other again. There are still hard moments between the two of them, but overall they seem happy to have each other.

Breaking Down

2009-07-18T10:52:00.000-07:00

I think it's getting harder to keep my sanity through all this. The irony is that Amanda had her best week yet. That's what makes it so hard. I get a taste of normalcy, which I long for, only to be thrown back into watching my kid suffer. It seems almost cruel. Yesterday's chemo proved to be brutal on her. She came home so sick and miserable. She had severe pain in her hips and legs all day and night long. It's the type of pain that nothing but heavy, addictive pain drugs control. I suspect it's bone marrow depletion, but I'll have to ask the doctor because it's not a typical side-effect that I expected. We struggled for hours to get on top of the pain because the only pain medication she can take causes nausea/vomiting. This is also the side effect of the current chemo she is on. The anti-nausea medication doesn't seem to stand much of a chance with both of these drugs. After hours of whimpering in pain, she finally threw up. I physically held her up in the hallway while she was vomiting, only to abandon her myself to gag over the same bowl. I felt awful as a mother. I'm getting very tired of cancer and hyperemesis gravadium. I unfortunately had my PICC line pulled this week due to complications from it. I'm struggling with fluid intake, which makes me more nauseated. Yesterday was unfortunately a bad nausea day for both of us. Some days being sick together comforts her. But most of them are overwhelming for me. Earlier this week I told Amanda that I was getting my PICC line out, she sobbed and said that now she's the only one that is different. It was so sad to see her reaction. She also asked me how long she will have treatments. I have been dreading this question. I was honest and said that it would be the end of 2011. She sobbed again. Despite these setbacks, she is learning to be more resilient. I think she's doing better with resiliency than I am. As of right now she's feeling better and happily acting more like herself. She doesn't complain about yesterday and seems determined to enjoy the day despite whatever setbacks she had this week. Fortunately, this is what keeps me going. Every day is new. I have to remind myself to not let yesterday's despair dictate new days that have the potential to improve my hope. The only exception to this is that we are planning to buy a minivan this week. No amount of encouragement or counseling is going to make the dreaded minivan a welcome part of my existence :)

Standard Interim Maintenance

2009-07-14T07:58:00.000-07:00

My pregnancy has taken my attention away from blogging recently. I will be induced in about 4-5 weeks which has triggered frantic nesting, contracting, and not feeling the best from running on empty. Fortunately Amanda is doing well enough that I have the chance to focus on other things. She started standard interim maintenance therapy without any problems. So far she is having fewer than normal side effects, but this will change as the month goes on. Her bowel and eating habits are changing. She told me the other day that she "HATES pickles." It made me laugh compared to our earlier drama about not having enough pickles. Now it's cereal and chicken legs. At least she can eat. The objective of this round of treatment is to get her blood counts as low as possible, but to keep her healthy. This ensures that the leukemia cells are destroyed. So far this round of treatment feels like a bit of a break compared to the others. I really think she's doing better because of fewer lumbar punctures. Physically she is making a lot of progress. She's participating in more activities rather than just vegging on the couch. And she's returning back to her normal chatter box self, asking all kinds of inquisitive questions. She is still struggling emotionally coping with all of this. The tantrums and mood swings were getting more and more frequent, and we can't blame it on steroids this time. Scott and I decided it was time to take the risk and let her play with somebody again. Her doctor has made it clear that she needs to just be a kid to get through this. She played with two cousins this past week. Watching her play and laugh was so encouraging. As you can see below, this smile was not faked. We took the picture after I told her when she'd see her cousins again.

Amanda is also smiling out of excitement for the new hat. We have to send a thank you to Kristen for it. Amanda has enjoyed putting various flowers on it. Kristen has gone through cancer three times. You have to check out her blog and some of the links they have to other people going through tremendous things. http://sheisourangel.blogspot.com When I think of somebody going through leukemia three times it makes it easier to think that we can handle once!

TIS A GIFT

2009-07-07T21:07:00.000-07:00

"Tis a gift to be simple, Tis a gift to be free....."

Amanda celebrated a week free from viral infections - what a gift! As for simplicity, she is making progress towards accepting the changes in her life. She told me that she didn't think we'd go to the parade on the fourth of July because of the crowds. She understood and was not disappointed. There is room for a lot more adjusting, but I'll take one small gift at a time. We did find a remote place to watch fireworks and managed to go "swimming" in grandma's hot tub (I'll spare Scott some dignity and not post pictures of him in a bathing suit, even though I think he looks just fine). No big parties, parades, or social gatherings. But, we are finding many ways to simplify our life and find moments of happiness. It is what is getting us through this.

Amanda is doing so much better physically and mentally. She has been feeling well enough to start up on some home schooling work, she's been going for walks around the block, and she's even tolerating Erin better. We still have rough moments every day. She has regressed a lot emotionally, and her anxiety level is still extremely high about, well, everything. But she seems happier, and that really is what matters most.

Tomorrow starts round three of five of her chemotherapy treatment. She will be off oral chemo drugs for about six weeks. This will be replaced by IV chemotherapy every ten days at clinic. One of the drugs she has had several times already, and she tolerates it well. The other drug has been used during her lumbar punctures, but typically causes mouth sores when done through the IV. We'll just have to wait and see how she does. And whatever hair she has left should be wiped out by the end of the month. Fortunately, she has only mentioned missing her hair once. Her immune system is very low right now, so we have to continue to cautiously go about our newly simplified life.

It's all fun and games until.....

2009-07-01T09:47:00.000-07:00

Yesterday was Scott's birthday. I talked it up with the girls like it was a trip to Disneyland. They were so excited and spent most the day decorating, making the cake, and designing gifts and cards, etc. One of the nice things about keeping the girls in a bubble is that everything has become a lot more simple in our house. They get excited over small things now. It was so nice to see Amanda laughing, playing, and getting excited. She seems to be over her viral bug. It fortunately was a short one and she is getting back to herself again. She also had her port de-accessed by her "favorite" nurse before the party. She gets so nervous to have it done even though it's becoming quite routine. But with total irony, it was all fun and games until she fell off the kitchen bench and banged up her knee pretty badly as soon as Scott came home. She couldn't walk for a while and was limping most the night. Poor thing, it's two steps forward, one step back with everything she does right now. But, most the day was very happy and fun for her. It hasn't been that way for a long time. It must have been some party because she's been asleep for 13 hours now. Who would have thought that eating cake and opening presents was so much work?

Here are some pictures of Amanda starting to feel better.

1. Girls making Dad's birthday cake. Wow, they are actually cooperating.
2. Getting some fresh air on the backyard swing in her new favorite hat.
3. The Nef version of camping - cooking smores on your backyard BBQ
and sleeping in your own bed that night!

Cross your fingers

2009-06-29T18:47:00.000-07:00

Ok, I'm going to try this again and announce that things are improving. I don't care if I'm setting myself up for how everything bad happens in rounds of three. Trying to stay optomistic is what keeps us going. Besides, bad things happening in three's happened a long time ago for us. I think we're three to the power of ten by now!

Amanda's fever broke today. It has gradually declined from Saturday night. She has slept excessively, her headaches have declined, and for the first time in weeks she is acting more like her normal bubbly self. She must be getting more tolerant of not feeling well because she didn't seem very phased by a 101 tempature most of the weekend. Aside from the emergency run to Primary's, whatever she is fighting off has been managable for her - nothing compared to last weekend. Keep your fingers crossed!

2 for 2

2009-06-28T06:52:00.000-07:00

My enthusiasm to be optimistic is quickly dwindling away. I cannot post anything positive now without a huge setback. I'm 2 for 2 now in saying that she's doing so well right before an emergency trip to the hospital.

Amanda started running fevers off and on again Friday. Once again, the lumbar puncture became my suspicion. She was having lots of headaches, was very ornery, and sleeping more than usual. Her fever started spiking last night - 10:00 on a Saturday night of course. This meant a trip down to the emergency room. Talk about the belly of the beast for a cancer kid! It's was nearly enough to induce a parental panic attack given the amount of germs surrounding her. I'm so grateful for Clorox Wipes!!! Keeping things sanitary and her sane was a two man job for Scott and myself. Overall, she did pretty well given the late hour. She was not miserable like last week. But, her fever spiked pretty high once we got there. She got her preventive round of antibiotics and we waited for labs. She was actually relieved that she doesn't need to have her port accessed on Scott's birthday this next week. It's interesting what stresses her out. Anyway, her labs looked good enough to not require a hospital stay, and she has no other noticeable symptoms. We made it home before 3am, and her fever was already starting to go down by then. We'll watch her closely. Again, she'll be hospitalized if her condition worsens. Hopefully she'll sleep most the day and continue to get better.

It is likely not the flu, as she was on Tamiflu throughout the week. But the doctors think it is some kind of viral bug again. I'm about to pull my hair out. We have been soooo careful with her and ourselves. Nobody in the house is noticeably sick, and she doesn't go anywhere anymore. In fact, I've had several meltdowns from her this week complaining about how isolated her life is. She hasn't played with a friend in over three months. We're trying so hard to protect her. I don't know what we are doing wrong.

Back to life

2009-06-25T10:05:00.000-07:00

I am so happy to say that Amanda has recovered from the stomach flu and is back to herself. Well, her "new life," as she puts it. She woke up today with more energy and coloring to her face than I've seen in several weeks. Her stomach calmed down a few days ago and yesterday was the first headache free day, which was just in time for her weekly clinic trip. I have not been convinced that the intense headaches were just from the virus and her team of medical staff agreed. We are still suspicious of her lumbar punctures causing problems. The doctor didn't think her brain cyst was an issue (no CT scan, yeah!) and instead we came up with some other ideas of how to try and improve the procedure for her (IV fluids during sedation, more bed rest on her back, drinking coca-cola (seriously) the type of needle used, and being exactly precise as to the amount of spinal fluid coming out as chemo therapy going in). I think what we tried is helping based on how much better she's doing today. And her LP's will go from weekly to about every six weeks, so this will probably help as well. She also doesn't have to go in for clinic until July 8th. We'll start treatment phase 3 of 5 at that time, if her blood counts are high enough. Her immune system took a pretty good hit from this virus. But, her red blood cell count is up, which means more energy and feeling better. The next two weeks should give her time to rebound even more. She will just have a daily oral chemo drug and some home health blood draws. The medication has not been as bad as I feared. The side effects are minimal. I'm officially leary to post any hint of optimism, but it does look like things can calm down for a few days for her.

I had to throw this picture in here, even though neither one of us is looking very spectacular. But who really looks great when they are sick? It's not that often that mom and daughter get to sport matching IV pumps. I'm hoping this is the only time!

A "Happy" Father's Day

2009-06-22T16:05:00.000-07:00

At 11:00 last night Amanda started talking and acting more like herself. Scott was able to finally get the Father's Day gift he was hoping for. Not what we'd consider a "happy" Father's Day, but it ended much better than it started.

Amanda is in no way completely better. But her headaches are more manageable, she broke the low grade fever, and she is slowly eating more. No more screaming or having to drug her just so she's comfortable. We'll keep her on the hydration pack for another day and they will re-evaluate her condition at clinic on Wednesday. It is such a relief to see her getting better, even if better means a weak cancer patient. It will still take her several days to bounce back to that. But we did it without a hospital stay. Yeah!

The results of her flu test are negative. It's just been a nasty stomach bug. Seeing how hard it hit her, and how mild it was for the rest of us, makes me absolutely paranoid of her catching anything else. We are going to have to be so careful, especially considering that swine flu is so prevalent. I can't even imagine how bad that would be for her right now after watching her go through this. We'll just do the best we can, hope that she continues to improve, and be as careful as possible to keep her virus free.

So Sick

2009-06-21T11:52:00.000-07:00

When I was told that Amanda had Leukemia, the first words out of my mouth were, "How sick will she get?" What we've witnessed the last 48 hours are exactly what I feared most. She has been so sick that the words miserable don't seem to touch it. As a parent it has been almost unbearable to watch what she has to go through. Her head is "exploding with pain" as she puts it. She just screams. The pain medicine makes her throw up and she didn't keep much of anything down all day yesterday. I finally asked Scott to give her a priesthood blessing before I had my own mental breakdown in front of her. I knew it wouldn't magically heal her, but I know that my clarity of thought has improved since and I've had much better ideas come to my mind of how to provide more comfort to her. I called the on-call doctor to figure out a better medication regiment. I was given the weekend on call delema of getting anything done, and that she'd just call in some different oral nausea meds. I knew Amanda wouldn't be able to keep it down and I argued that we'd be up all night with her screaming in pain. The doctor was reluctant to prescribe anything but oral medication and noted that cancer kids just have more intense symptoms, that's the way it is. This was not the right answer to tell me. I demanded her prescription be IV push meds and told her that I've maintained my own PICC line for 5 months and don't need Amanda hospitalized in order to get it. The doctor finally agreed to home care, but said they'd hospitalize if her condition doesn't improve by Monday. Home health was very fast, unlike her prediction, and the pharmacist spent an extensive amount of time with me discussing everything I needed to do. FYI -I'll take an on-call pharmacist any day over an on-call nurse practitioner. They always seem to be so helpful and patient at odd hours.

As I thought, the IV meds are helping. She still is in a lot of pain before the next dose is due, she's still nauseated, and a fever comes and goes. But, she is far more comfortable now. I've also figured out better ways to get her to calm down. Much of her pain is intensified by her crying. I've mostly made up silly stories about going to the beach with the people she is very attached to. We are going to owe her one giant vacation there when this is all over with!

It's ironic how some of the hard trials in our life prepare us for something else. I never expected that learning how to manage my own home hospital care would help prevent Amanda from the trauma of being hospitalized. That, and I'm fortunate to have a sister-in-law that is an excellent pediatric nurse whose son had a bone marrow transplant. So, her trials have provided me with hands on experience and advice that I don't get from clinic doctors. She also knows exactly what we can manage at home as well.

As of this morning, I can say Amanda's condition is improving slightly. Hopefully I haven't spoken too soon. Doing better means she actually left her room and kept down some waffles. She is also sleeping a lot, which gives me a break. She's very moody and emotional, which is proving to be exhausting for all of us here. She's such an emotionally sensitive kid. But she'll get through this. I know she will get better. She's too strong willed.

Spoke too soon!

2009-06-20T06:55:00.000-07:00

I am now very leery about announcing good news. Amanda was doing so much better until I posted something about it. She came down with a fever early yesterday morning. We followed the clinic's protocol and called it in. We were told to go down. I frantically packed the bags while listening to her cry hysterically. I was convinced she would be hospitalized. Fortunately, she is home because her counts are so high (her ANC - immune system - doubled again!). It is definitely a blessing for her. But, unfortunately, she is not doing so well. She has picked up a viral bug of some kind. The clinic is treating everybody like it's the flu. They said the hospital is full to capacity with flu, and several cancer patients are contracting it. We should have the test results on Monday. I think it's a stomach bug that Scott and I had last week. Unfortunately, he just thought it was something he ate and I have hyperemsis; I'm always nauseated. We've learned our lesson to always wear a mask, even if it's indigestion. It's so frustrating. We've been so cautious with her. The fever didn't last long, but she's thrown up and has been very nauseated to the point of not getting much down her. The worst part is a very severe headache. She is in a lot of pain. The more pain she's in, the more nauseated she is, and the less medicine we can get down her to help. It's a bad cycle. And the fact that she just had a lumbar puncture doesn't help. If she doesn't drink enough after the procedure, it triggers terrible headaches that are hard to get control of. I'm currently waiting for home health to show up to access her port so I can start her on IV hydration. I called the on-call doctor and said I already have all the hydration supplies and plan to use them on her unless they told me no. The doctor was a bit surprised, but didn't argue with me. I'm hoping it will help. If not, it's back to the clinic and a potential CAT scan. I think she's back to square one with fear and anxiety, so pray she can pull through this without needing a hospital stay and a good psychologist.

REALLY???

2009-06-18T06:53:00.000-07:00

I about fell off my chair at yesterday's clinic. There was nothing out of the normal routine - Amanda lamenting about being hungry, scared when they have to access her port, eager to get home, etc. But, her blood counts were totally unexpected. Her immune system (ANC count) tripled and her platelets doubled in one week. But at the same time, her red blood count went down, as I had suspected, but not quite low enough for a transfusion yet. I just don't understand how that is possible. I had to reread it several times. To have her counts go that high so quickly, but selectively choose to have some drop. How does her body do that?

At least for this week a paperclip won't cause her to bleed out and her immune system is temporarily within a normal range. Perhaps we can enjoy an outing for Dad's birthday and the 4th of July without our Lysol bubble force field at full force. I still plan to clorox down anything and everything until 2012. It's too much of a habit now. And the anemia really does slow her down and make her not feel well. But if I could choose which count to have problems with, I'd choose the red blood cells. For an active social kid, it's the least life threatening of the three.

GOOD DAYS AND NOT SO MUCH

2009-06-16T15:52:00.001-07:00

I won't sugar coat it. Amanda is just having moments where I know she is downright depressed. I don't know if it's the new medication, trying too hard to do too much, adjusting to all the changes and stress....or likely all of the above. She is so smart and understands so much, but I think she can't cope with it all emotionally. Yesterday, she wasn't herself and noticed all the hard changes in her life. I couldn't argue with her and it's hard as a mom to support her when I'm having all the same feelings. Fortunately, they seem to be passing moments for her. I guess I would be worried if she didn't have them. None of this is normal for us, but we're slowly adjusting.

She is on her new medication. Overall, she is acting more like herself and has regained a lot of strength. I can tell by how much she runs around the house teasing her sister. (I had to actually discipline her because she tried to turn Erin into an art easel). But last night the nausea spells started. I think her counts are dropping too because she's pale enough to be mistaken as an albino. We'll ask for some anti-nausea medication at clinic tomorrow and hopefully a blood transfusion will be in her near future. None of it is pleasant, but manageable.

I have finally figured out that all of her really good days and moments involve having Dad around. She has become so attached to him. He offers her something I can't and I love him for it. Here she is, thrilled to get out of the house and spend time together as a family on a picnic.

But, in our attempt to have our primary lesson outside, we were sent rain. God didn't seem to approve of the venue.
The headbands from aunt Leisha are a big hit! The girls are really getting into the head coverings.

What a Sweet Sister

2009-06-12T17:36:00.000-07:00

Amanda's cancer has brought out the two year old in her, and the twenty year old in her. I've had several medical appointments lately and she's been more keenly aware that our unborn baby is having some struggles. Today she said that she wants me to tell everybody about him on her blog. She wants me to ask people to say a prayer for him since that will help him get healthy and strong. She is capable of being so sweet and wise beyond her years sometimes!

Although this blog is for her, we know many people are concerned about our family as a whole. So, per her request I will let you know that our little guy is proving to be pretty tough. We were advised (the day after Amanda was diagnosed) to terminate our pregnancy because it was less than 25% birth survival, and a pretty grim outlook beyond that. He had virtually no amniotic fluid and a very enlarged heart, plus a few other technical health problems that I don't think I can even spell. Long story short, he has made an amazing comeback that our doctors have no explanation for. The doctor just tells us that he is glad to be wrong and that this is not the norm. The major health conditions that were present have almost completely resolved with the exception of him being very small. We are being told to plan on a 4 pounder at most, but that he can very likely make it to 37 weeks (in August). We have no explanation as to what has caused the problems. It really doesn't matter anyway. It has always been up to God what happens. But I do not believe it coincidence that his health begin to improve when we started asking people to help pray for him instead of keeping it quiet. So, I think Amanda is very wise for her young age and I appreciate her ability to have faith in something she doesn't understand.

SHEARED

2009-06-10T16:01:00.001-07:00

As you can see, Amanda is wearing a lot less hair. She does not like the word "bald" and was reluctant to let me cut it. But the misplaced mullet, comb-over, thinned out look was just not becoming to her pretty face. So we discussed all the various animals that shed, molt, etc....and eventually grow it all back. She decided that she liked the idea of a lamb being sheared and she even baaaaed as I was cutting her hair. So, she is NOT bald, she is SHEARED and relates herself to a little lamb right now. She didn't even bother to look in the mirror when I was done. It's usually just the anticipated change that bothers her most. She seems very content with her new look.

Today started round 2 of 5 out of our treatment phases. This one will last a month. She had a very good clinic day. I love that the staff listen so intently to how she is doing. I don't always know what to expect from her treatment or know what to bring to the doctors attention. I started complaining that I dread lumbar puncture days because she does so poorly afterwards with headaches, fatigue, and mood changes for a few days. I also told them she has a small brain cyst; I think that took the guess work out of trying something more cautious. I thought they already knew about it - oops. They recommended we use a different needle and be highly cautious of the ratio of fluid taken out and medicine put in. The new needle was used today and made a HUGE difference. She came home and played the WII. She usually curls up in a ball on the ride home and needs a few doses of pain medicine. I'm sooooo glad I mentioned it.

This month starts a daily dose of oral chemo which we'll start tonight and cross our fingers she does well. She has really started to bounce back lately. She's laughing more, acting more like herself, and even tolerating Erin to the point of teasing. She's also much stronger. Her butt muscle exercises are doing the trick.

Our only setback is that her hip x-ray showed some density depletion and spots where her bone marrow has stopped working. This is due to the steroids. We anticipate that they will go away now that she is off the heavy steroids. But, if it doesn't, we'll have to look at altering her treatment plan as these are not good permanent side effects.

Many Thank You's

2009-06-07T14:25:00.000-07:00

We are very behind on the many thank you's we need to offer to people. We cannot possibly thank everybody in person; there are too many. From gifts, to kind words, to donations, to prayers, it has been very uplifting for us to know how many people are in support of our family. It is a very tough time in our lives right now. I am still on IV's and find some days very difficult to care for myself, let alone my children and their individual health problems. We are in the midst of a very high risk pregnancy with a severely growth restricted baby. We will likely be facing an extensive NICU stay sometime this summer and are praying that our baby comes when both he and Amanda are strong. Erin is, well, Erin. As my brother-in-law says, "everything about that kid is special." Her unique allergies and behavior oddities live up to that statement. And, then there is Amanda and cancer. We often hear comments that it is like Job at our house. I do not agree because we are surrounded by friends, family, and total strangers that are supporting us in amazing ways. I think to not have that would be far harder than what we are facing. The only way I can think of thanking everyone is to post more pictures so you can see for yourself how we are doing. It seems to be about all that we can offer during our period of isolation. And it gives us a way to show that despite hard times, we really are hanging in there.

Here's a get well surprise left by Amanda's SEM class. It made her smile after a tough treatment day. Her regular class made her a wonderful card that rolls out the length of the driveway!

Here is Amanda sporting her new haircut and new steroid cheeks.

We can count on one finger the number of family outings that we've gone on in the last six months. Amanda was finally strong enough to get out of the house and walk on her own (for the most part), so we found a secluded place to watch the air show this weekend. Both girls lasted much longer than expected. Having the ice shack behind us and a Dad eager to splurge on his girls helped. I was the one that pooped out before they did.

We are finding new family past times. Scott now spends every Sunday morning teaching Amanda how to make french toast. She is getting pretty good at cracking the eggs. The girls eagerly put on their aprons before Scott's even up. The only problem is that Amanda really needs a hair net. Her hair is falling out everywhere!!! She's a walking comb over right now. Fortunately, she doesn't seem to care much, but is still reluctant to go completely bald by choice. Before my new vacuum explodes from all of the hair "gerbils" around the house, I'll hopefully be able to convince her to cut it all off soon. Fortunately, no hair was found in today's breakfast!

Next phase of Chemo

2009-06-03T12:20:00.000-07:00

Not all of today's treatment went according to plan.

First, we found out all the testing results to determine which treatment round she goes on. Once again, we are very fortunate. She is doing very well and gets the lowest risk route. This means the fewest medications and the most optimal recovery outcome - YEAH! We were anticipating this route, but it is a relief to have it confirmed. We also opted for the non-clinical route. Because her prognosis is so good, and for several other reasons, we did not feel it necessarily beneficial or necessary for her to be part of a research study at this time. This also means fewer medications.

The change of plans was that she was not able to begin her new treatment regiment today as planned, so she didn't get any chemo. Her red blood counts were too low. She's very anemic right now, but they chose not to do a blood transfusion. Instead, they are going to give her body another break for a week and see if she can produce more red blood cells on her own. It prolongs her treatment a week. But the stronger she can be going into the next round, the better.

It also did not go according to plan as the doctor was concerned about her regular physical work-up. She's really struggling to walk. It is a side-effect of the intense steroids. But, she fell on her hip several days ago and has maimed that hip ever since. The doctor was concerned and had us work with a physical therapist today. She isolated muscle weakness in her right hip, or "weak butt muscles" as she put it. With all the sitting Amanda's been doing I would think her butt would be nice and strong! We have been assigned some exercises to have Amanda work on. We also did an x-ray on her hip to rule out an injury.

And I must point out that I don't think I heard all but a few complaints today. Compared to last weeks screaming fest, it was a nice change. I can thank the lack of steroids for that, and having Dad attend. I keep asking her why she's so ornery for me and not him. Suppose it's just a mom thing. (all you mom's should shake your head in agreement!) Despite having dad there to entertain her, she is doing much better with her mood. She is acting more herself. So we will enjoy another week of resting and building her back up physical and emotionally.

A Break

2009-05-30T13:41:00.000-07:00

Amanda is off the steroids. Yeah!!!!!! We get a break for a few weeks. She already slept better last night and is talking and smiling a little bit more. Her appetite is still insane.

Her Friday clinic day was full of angry outbursts and lamenting about starving. This is becoming the norm. The doctor and I just talked over her screaming. They must be used to it too. We discussed the next treatment round, which should begin Wednesday. We are waiting for the results of her bone marrow test. There are three different treatment rounds that have been proposed. We have already been eliminated from the most aggressive one based on her DNA. They are able to detect which DNA malfunctions in the production of leukemia cells. She had the better chromosomes malfunction. It's amazing to me what they know about this disease. I am praying for the less invasive treatment. It is far fewer medications. We also have to choose between the clinical trial and standard treatment. This means having her in a research study that increases certain medications. But I know that it is because of past research studies that the cure rate has increased for Amanda. I have a lot of respect for people that have taken the risk to try new treatments that we are now the benefactors to.

Regardless of what track we are on, she will have about 8 weeks of mostly new medications. These will be the ones that cause the traditional cancer side-effects; hair loss and nausea. We'll see how she reacts. After that, it will be another intensive round with increased medications for up to two months. If all goes well, she goes into long term maintenance, which is generally a two year course of monthly chemo treatments, occasional steroids, and a few other drugs thrown into the mix. It's one treatment round at a time, otherwise, it is very overwhelming to think about.

PICKLES

2009-05-28T21:20:00.000-07:00

The food cravings are insane! She can eat a full, adult size meal every three hours. She goes into a complete rage when she doesn't get food immediately. And she's smart enough to know when I'm trying to postpone the next meal or ignore her, which makes her even more mad. I grow weary of the bedtime meal, 3 am salty snack food cravings, 6 am full course breakfast demands (bedside snacks are not good enough anymore), second breakfast, brunch....you get the idea. Pickles are the latest greatest thing. She's never liked them before. I think she ate an entire jar in about three days time. Sunday night we were frantically trying to find neighbors that had a jar on hand, only to sing the praises of my food storage efforts when a jar was located in the back of the cold storage room. It gave a whole new meaning to the phrase "emergency preparedness."

All this being said, I don't really recognize my daughter anymore. Physically she looks nine months pregnant and can hardly walk. Imagine having nine months of weight gain happen in three weeks. Her poor muscles just can't keep up. This is triggering a lot of pain in her joints. We find ourselves supporting her to just walk so she doesn't fall. She's loosing the ability to even care for herself because she's too weak.

Emotionally she's grasping how cancer is not a fun thing to deal with. There's been a lot of poor me crying spells. The words "stupid cancer" are muttered many times a day. She does not act anything like her normal talkative self. There's not as much smiling or playing. My days are filled with a lot of tantrums over trivial matters. She gets mad that Erin is even in the same room as her. Amanda knows that she's not acting normally, which makes her get down a lot. I keep reminding her, and myself, that it will not stay this way forever. And as she puts it, May 2009 has just been really bad!

Tomorrow is our last treatment day of our "intensive" month. I am nervous to go into the next phase. There's a lot of anxiety that comes with anticipating the side effects of a new medication regiment. But, I am looking forward to having more of my daughter back as she will not be on this high a dose of steroids again, if all goes well. I keep telling myself that the doctor's said the first month is the hardest. We'll meet with her physician Wednesday to discuss the details of her next treatment round.

GOING BALD

2009-05-26T12:28:00.000-07:00

The hair loss begins. Sunday night Amanda's hair started coming out. Just brushing her hair filled up the brush in a few strokes. So, I had to sadly say goodbye to her long hair. She has wanted it cut for a while. I told her she had to wait until after her baptism so it could be braided up. But then she got sick and missed her hair appointment, which I am now glad for since it gave us a chance to save a pony tail for her. I've just enjoyed having her pretend to be a puppy dog every time I put it in pig tails. I think as her mom I may miss her long hair more than she will. She will never have it this long again and enjoy being an animal at the same time, at least I hope so.

We sat down and talked about baldness as a side effect of her chemo. She made a face like she'd eaten something sour. Fortunately, Amanda is not very concerned about appearances. As she put it herself, "I'm more the artistic, creative type." I'd like to say she is taking it well, but we will see once it all falls out - most likely within a few weeks, or even days at the rate it is shedding. She did say that she does not want people to think she looks like a boy. She was easily reassured by the discussion of cute bandannas. And, she wants to keep her hair on Grandma's Wii game character. This was a BIG DEAL. She seems to be at a reasonable age to handle it well. For now, I cut her hair in a short bob. It's a good thing she's in isolation because I am not very good at styling my own hair, let alone cutting my daughter's. Who knows, baldness might look better than the cut she's got!

Making Progress

2009-05-22T16:10:00.000-07:00

I don't know if there really is such a thing as a "good" clinic day. Nothing about going to clinic is good to Amanda. Watching other healthy kids ride their scooters to school on our way down to Primary's doesn't make it much of a good day for me either. But, we are adjusting to the new routine, we enjoy the great staff at Primary's, and she didn't have to be sedated today which meant she was able to eat before we went. Eating made a BIG difference towards a more pleasant Amanda. She's making progress with handling the anticipation of treatment days and is less frightened as she realizes that the whole process requires virtually no pain. And today's nurse seemed to know what she was doing, which helped.

More importantly, she is making progress medically. The doctor told us that when she was first diagnosed with cancer, her bone marrow was 87% leukemia cells. By day 29 of her treatment the target is to get her to 5%. We are 22 days in and her bone marrow biopsy from last week shows 4%. We are amazed at this great response. Additionally, as of today she is no longer neutropenic. In fact, her blood counts today showed her with a stronger immune system than when she entered the hospital. It is still a very poor immune system that continues to require a lot of caution. But this shows that her own blood cells are functioning better now that they are not as crowed by the cancer. This is what we want.

We can say that it has been two steps forward, one step back. She's getting better medically, but her medication side effects are getting worse. She is struggling to walk, has gained an insane amount of weight that her muscles can barely handle, is starting to have more nerve and joint pain, and she's still very lethargic most the day. Oh and we cannot forget extreme anger and mood problems (Scott has labeled them "roid rage"). But, these are all common side effects. If all continues to go well she will begin a different treatment regiment in June and many of these side effects will decline.

NEUTROPENIC

2009-05-18T17:04:00.000-07:00

I know many of you are wondering how Amanda is looking through this whole process. We'll update more pictures along the way. Here she is happily doing art projects with her soon to be missed hair.
Along with a new picture of her, we'd like to welcome you to the new world of medical terminology that we've had a crash course in. Our vocabulary word for the day is "NEUTROPENIC."
Being neutropenic means that Amanda's white blood count, particularly the cells that fight infection, are too low to work effectively now. Our biggest concern is bacterial infections as they are quickly the most life threatening. A viral infection can turn in to this and would also mean several days in the hospital. So in other words, we are officially in "isolation" for a few weeks as her counts are going to continue to drop during her intense chemo treatments. The doctor warned us that this year's cold and flu has extended longer than usual and that there is a particular virus going around that is proving to be very hard on leukemia patients. Our main job in life is just keeping her safe right now. As such, we've set up some guidelines that we want people to be aware of.

no people over to our house that have children under the age of five in their home.
no school age friends or adults of school aged children until school has been out at least a week or two.
we'd prefer no unexpected visitors. please call first so we can tell you if it's a good day or not to stop by. We will likely stay outside to talk. But don't come if you are sick or have been around sick people.
We're going to try and keep contacts to a norm for a while to help things settle down. This means we'd prefer family and friends she's used to seeing.
Erin will be in included in our "isolation" plans. Having her sick means we get it too. We appreciate the babysitting offers, but we'd prefer to not have to ship her off to relatives again from illness. She's way too ornery to readjust again!

Fortunately, Amanda should only stay neutropenic for a few weeks if all goes well. It may prove to be fairly manageable as her interest to be social has declined significantly. She spends about 90% of her time just resting. She is not asking to play or be with friends. She's even struggling with walking and car rides. It's hard to watch her decline so much, but we know it's temporary. The good part is that it's been a nice time for us as a family to reconnect and let things settle down. That means lots of board games, movies, video games, art projects, and reading. As hard as all of this is, we are really enjoying our time together as a family. We encourage all of you to do the same before it takes a major illness to remember how much you really appreciate and enjoy each other.