Monday, September 15, 2008

Monday Night

Today has been a pretty good day for Kevin. He's still neutropenic (low white blood cell counts); in fact he's still at 0. With that he's a little weak, doesn't really eat, and experiences nausea. However, psychologically he's doing much better. Rachel and I have some difficult decisions to make regarding school. We hear conflicting information from people we talk with. One of the BMT Doctors who's speciality is infectious diseases, said in no uncertain terms that he should get home bound schooling for a period of 1 to 3 months when he goes back home. He said although his neutrophils will be up, which will protect him from Bacteria infections (which he's suffered 4 times since chemo) that his immune system as a whole will still be compromised which will leave him vulnerable to viruses. As we all know kids bring and share all kinds of germs and viruses to the class room. So, if we go soley by his advise Kevin will be homebound schooled for a few weeks when he goes home, until he's a little more equipped to fight off illness. However, we still need to talk to Dr. Gajjarr and I'd also like to talk to Dr. Hale. We've heard of both ends of the spectrum with kids returning home. Some hit the ground running (not like others, but pretty close) and others definitely need extra time to rebound. It's not clear which category Kevin falls into. I talked to him about it tonight, and he feels if it's safe he definitely wants to return. He said maybe if necessary take a week off to catch up on sleep, but doesn't want to miss more then that. He will be a large part of the decision, but if his counts are below 2,000 there's no way he can go back. The nurses I've spoken to who are moms for the most part, and work in the BMT unit have sides with the Infectious disease doctor. Saying November or December or even January would be much safer. I asked in a way of course that was what would they do. They were hesitant to ask if it was on the record (they don't want to interfere with doctors guidance), but when asked what if it was their child they spoke candidly. We'll speak to the doctors and see how his counts rise and go from there. His counts will go up soon, first above the 500 that it takes to be let out of the BMT level, then above the 2000 which is considered neutropenic. However, it's kind of a false count as he gets daily GCSF pushes through his line, which assist the rise of his counts for the short term. The actual Bone marrow transplant is more long term, but it takes a while. So once his counts go above 2,000 for two days in a row they'll take him off GCSF. Then we wait and see what his counts do. They'll actually probably shoot up to 3,000 or 3,500 for a couple days, then once the GCSF is out of his system they typically fall back down, although not down to the critical 500 or less levels. He really wants to go back a.s.a.p to see his friends, but we're not going to rush it if it's not safe for him. We're still kind of in an information gathering and wait and see pattern. We do need to tell his school something though. If he's going to be homebound schooled at first, we need to get the wheels in motion. For now I'm pleased that he exhibited some longing again for a return to school and a return home. A couple nights ago he was in a different place. He knows he has a big family to support him every step of the way. He feels comfort in knowing that we're nervous too, which is kind of a weird thing to say I suppose. When his counts rebound he'll have even more energy and I suspect will be even more eager to get back. I think accademically he's going to be ok. He'll start off behind a little, but he does like to learn especially when given positive feedback. We did some math today, and I was real impressed, and he really fed off of that. I'm not sure when we're out of here, as his counts will come up all of a sudden usually. My guess is wednesday or thursday. I hope everybody back home is doing well.

Take Care,



Anonymous said...

I'm glad to hear Kevin will be going home soon. He sounds so mature to me... when you said he may need to take a week off of school to sleep. That is almost something that an adult would say. I'm really proud of him. He's such a strong little guy and is truly and inspiration.
Your cousin

terri braswell said...

Hi Eric, I am glad Kevin is doing so much better. Psychologically this is so hard on them. It is like a roller coaster.

Heather's last ANC was 1700. It has bounced feom 1100 to 1700 at its highest last week. We were told 3 months at home for school. I think with middle school it would be a little harder on her going back. Her energy level is not there yet. We have an appt to set up homebound school. We will play it by ear and maybe take her in for short periods of time. Scott and I are thinking to err on the side of caution. It iwll be hard since the cold season is just starting up. It is a hard decision.

I hope all is well with everyone else up there. We miss seeing ya'll. It seems like forever since we have seen you or Rachel. We did get to see Kevin and Mike and Kevin added his handprint to our canvas. We were very glad to get that. Hope ya'll get out soon and Kevin continues to feel well. Much love, Terri and Heather

Laura said...

Eric & RAchel,
Being a teacher and seeing how often "healthy" kids get sick on a daily basis in my second grade class, I would be in no rush to send him back before he is physically and emotionally ready. The risk outways the excitement to return asap (as I'm sure Kev wants to on most days). Once he's back, he's back for the next 10 years and after a few months of settling will be like he never left!!! A little bit of time after such a tramatic ordeal doesn't seem like much in the grand scheme of life...his that's the big one. I know you both will make the right decision after you've gathered all of your information as you both have this entire time. YOu may need to take it day to day once you get back and let his health and mood be the scale. Your the parents and you know what's best for him. Take to you soon!! Miss you all..give him my love.