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.