Wednesday, March 23, 2011

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.

Friday, March 4, 2011

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.