Sunday, March 4, 2012

Friday's Marathon

Friday was a busy day. We dropped off the other kids at grandmas houses and started into the hospital. On our way in the Nurse Practioner called. She wanted to let us know that his echo he had had the day before had been unusual and we would be altering his chemo schedule and we needed to meet with a cardiologist. She told us we would discuss it more when we arrived but she wanted to tell us over the phone because I guess the cardiologist had called and left a message on our home phone and she wanted us to hear it from a live person instead of an answering machine.

When we got there we met with Dietary who gave us a rundown of our after bone marrow diet. Basically everything needs to be cooked, no fresh fruits and vegetables. They also want Critter to have his own stuff like his own peanut butter jar that others don't dip into. His own package of crackers that others aren’t sticking their hands into. His immune system will have such a hard time determining what is considered foreign and what is supposed to be its own body that it just doesn't know how to react and won’t fight really common bacteria. Next we met with a Pharmacist. He went over all the chemo drugs and other drugs Critter will be taking. None of them are very nice and all of them have bad side effects.

Next we met with a nurse about the care he will need. Things like he will have to shower every day and be weighed twice a day. Now I know this doesn't sound like much but last time any movement was so painful for him. I showered him every other day and did a bed bath in-between because he is so week he shakes when he stands and it is so painful and miserable. Weights are the same way. We usually end up holding him then they weigh us and minus our weight to get his correct weight. It’s just miserable. He will also have to do mouth wash 4 times a day. This will be pretty awful too. I posted a picture of me and him from last round. This is what he looked like when he started feeling better. His mouth is full of spit and he wouldn't swallow. Every now and then he would open it and slowly drool out but even spitting hurt. I can imagine how awesome mouth wash 4 times a day is.

After all of that we met with the cardiologist. Critter has decreased heart function. His heart is not pumping out as much blood as it should be. This is heart damage caused by having so many rounds of chemotherapy. We knew a lot of the drugs he was on might cause heart damage and it looks like he is now suffering the consequences of 7 rounds of intense chemo. They are going to start him on some heart medication and monitor it while he is in the hospital then we will follow up after bone marrow. The drugs for bone marrow may do more damage but it seems to be a necessary evil. This will probably not get better and he may be on medication for his heart for the rest of his life. I guess only time will tell.

The one good part about all our meetings was the bone marrow doctor. When we reviewed all the procedures and discussed all the risks and benefits he was very optimistic. He was excited that Critter had a perfect sibling match. He talked about how because her cells are so immature they should react well to his body and be able to grow and adapt better. Overall he gave us the impression that this will work. Sometimes after meeting with docs we leave feeling a little helpless but we left PCMC Friday feeling nervous about the next month but confident about the prognosis.

So because of the change in medications the plan has changed a little. We will be admitted Tuesday for line placement, start chemo on Wednesday, Ruby starts her shots on Thursday, and transplant day will be Monday March 12. So we get to relax for one more day at home and then it is the beginning of the end. Thank you to everyone for all your prayers, love, support, gifts, encouraging words, etc. We have been overwhelmed by everything. We couldn't ask for better family, friends and neighbors. Thank you all.


  1. Wow, what an en devour. You are all such an amazing family! Our thoughts and prayers are with you. Best of luck to both of your babies!
    -The Atkinsons

  2. Down to the final stretch...Yay!
    Keep fighting Critter we know you can do it!
    We send you our Best Wishes for Critter & Ruby
    Your little family will soon be off doing fun adventures again!

  3. good luck you guys! we will be thinking about you often and keep you in our daily prayers- especially critter and your little ruby!!

  4. I have you and your family in my heart all the time. I am constantly praying that you guys get all the help you need and that your little critter does the best that he can in these circumstances. Good Luck over the next few days and I wish he didn't have to go through all of this. I am so glad that you have a perfect sibling match because that is a great thing for everyone. Thank you for all your sweet words and your journaling through all of this. It really tells a small little glipse of what you guys are going through.

  5. That is a lot to go through. Nicky, you are an amazing Mom! Critter is so blessed to have you there with him. Ruby is such a blessing too. And such a sweet little girl. How grown up Critter is to be so empathetic to his little sister. So sweet! We continue to pray for Critter and you, and Ruby and all your family!

    I am very familiar with having to use mouthwash several times a day! It has prevented any mouth sores for me, but I need to find something for nose sores!!! I don't think mouth wash will help with that!!! I hope that Critter can get the hang of using the mouthwash. I know it helps.

    Such a lot to deal with for such an active little guy. It has made him strong. Praying that all goes well this week and on Monday.

    All our love,
    Becky, Sherwood and kids