"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.