Monday, January 23, 2012

5 doses left!

We have five more doses of chemo before we are done with chemo and are here just for count recovery. Last time we were here I was always trying to "do without" stuff from home just because we were so crammed into our room, but this time I have decided that anything that makes us feel more comfortable is worth having! So I think I have more of my house here than at home! Ruby has all the baby toys I thought she could use! I hung her from the bathroom door and everybody comes in and laughs at her happily bouncing away. (Doctors that don't have kids really get a kick out of it). I am so happy with Ruby up here with me. It makes a dismal hospital room feel infused with life. I miss my kids at home but instead of feeling separated from them I feel lucky to at least have half of my family here. Everyone was so excited that we finally had a girl and I think the gender doesn't even matter anymore. We are SO blessed to have a beautiful happy baby to bring joy into our life when we needed it most. Things don't seem as dark as they did when we first relapsed.
Critter gets a big breakfast everyday...but is eating less and less everyday. Its the same old stuff. A week into chemo and he starts to require oxygen at night and quits eating. I know it will get worse and he will start to loose weight and he will get more tired and all of that. But I also know that his counts will recover and when they do he will slowly start to feel better and eat more and breathe better. Its becoming so predictable that we can finish the doctors sentences or say them before they start. Its all a waiting game. I am nervous about bone marrow but I just want to get started. The sooner we start the sooner we can finish. Right now Critter sleeps in in the mornings (he slept till 10 this morning) and is happy and surprisingly active during the day. All is well.

Wednesday, January 18, 2012

Kinda funny

This weekend we played Monopoly with the boys. Jason kept drawing a chance card that said he owed "doctors fees" and to "please pay" some amount of money. It was kinda ironic. We all had a good laugh about it. But he did end up winning the game so if we can just beat cancer I don't care what it costs us.

We're back!

Well we were admitted today. We came in at nine and we were unpacked and watching TV at 9:45. We are getting good at this! We thought Critter would cry and freak out, especially since when we came to our appointment the other day he asked everyone numerous times if he could go home. But today, to our surprise, he acted excited. He set up his blanket and stuffed animals in his bed and asked me to turn on "Mouse" (mickey mouse club house). We then had an echo (this one is a base line so they can do another later to make sure they don't damage his heart, the drugs he gets this time are really hard on the heart) and a CT scan (last time with his infection he got little pockets of infection in his lungs and they wanted to make sure it had cleared up). They gave him versed ( a sedative that makes you feel drunk) before the CT scan and he was SO funny. He laughs at everything and thought it was hilarious when the nurse took a blood pressure on his leg instead of his arm. They also placed an IV in his hand for the CT scan and once he got the versed he thought that was funny too. He tried to count his lines (he can usually count to 3 but when your two and drunk its really hard)and he thought it was really funny that he had 3 lines now! All in all it was pretty good. We got some great news that he is in remission after the first round! That means we get Ara-C, Doxarubicin, and Etopiside this time for 8 days. He has had all of these meds before so I'm hoping for nothing too unexpected. You would think that I just sit all day up here but with Ruby here and Day 1 with Critter I feel like I haven't had 2 minutes to sit and breath. I just hope everyone sleeps good tonight.

Friday, January 13, 2012

Bone marrow biopsy today

Well we had our bone marrow aspirate today to see if we have achieved remission. If we have we get the same chemo drugs that we had last time in round two, if not we get new drugs that the docs tell us make them really sick for a long of course we are hoping we are in remission. We won't get results until Tuesday because Monday is a holiday. No matter what happens we will be admitted Wednesday morning.

I also spoke with the bone marrow docs. It turns out a perfect match is harder to find then I thought. They have only one candidate and they still need to do more testing to see if they are a "perfect" match and the doc said she doesn't think they will be a it looks like they will be using Ruby. I am excited because I think she was meant to save her brother. The Lord works in mysterious ways and the timeline of her birth and his relapse is nothing short of a miracle. We are so thankful to have the Lord as our companion on this journey.

And as for Ruby...the Nurse manager has hummed and hawwed about her staying up at the hospital with me this round but I am tired of waiting for an answer and have decided to take her with me until they tell me not to. I'm not sure if they will really tell me no so I'm just going to do it until they really put their foot down. I just can't stand the thought of only seeing her on the weekends so I'm avoiding it for as long as I can.

For now we are excited to do absolutely nothing as a family this weekend!

Wednesday, January 11, 2012

We love being home! After 25 days in a little hospital room my little house feels like a mansion! The first day home Critter had a hard time adjusting. He is number 3 on the list again instead of number one all the time and he has a hard time with it. It is really hard to know when to stick to your guns and let him cry it out in his room and when to give in because he is probably not feeling well. We had behavior issues in the hospital too. He yelled at a nurse to get him a coke one day. So he didn't get his coke for 6 hours until he said please. You feel rotten telling him that he has to be polite to get food and drinks and when he says he would rather starve you say go ahead and try I'll just run nutrition through your line! HA!

At home the other day we had a fight because he wanted to draw blood out of his line. He has seen it done enough he thought it would be cool to play with his blood. I hid all the syringes and he threw a temper tantrum screaming "I want my blood" and I was telling him his blood had to stay in his body. I felt like an idiot having that fight. This picture is when he threw a fit about something and wouldn't put his clothes on. He had antibiotics due and usually he sticks them in his pocket while he plays but because he was refusing to wear clothes he put his hat on and told me to clip them on his hat. I finally said whatever and left him in his room naked.

Even after all of the bratty stuff we would much rather be doing it all at home. Every day he gets a little better with the rules and he feels great for the most part. The docs took him off his TPN and sent us home and told us to call in a day or two if he didn't eat. I was really nervous but once he got around his brothers he started eating! We were so happy and even though he doesn't eat much he drinks carnation instant breakfast a lot and he isn't losing weight so we are OK.

Well were supposed to go back on Friday but our last labs said his anc was 300 which means his body is still recovering. They don't want to admit us until his anc is over 8-900. The new plan is a bone marrow aspirate on Friday to see if we are in remission and then they will admit us on Wednesday. So more time at home! YEAH!