I am nobody! Who are you?

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

-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

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

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!!!

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

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

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

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!

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.

"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

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?

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

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!

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......

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

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.