Tuesday, January 17, 2012

Day +4

Today is day +4 of Jacksons' third bone marrow transplant. Day +4 usually means his old bone marrow is completely dead, and the new bone marrow hasn't begun to grow yet. Day +4 means that he has no immune system. Day +4 also means that we've been in the hospital for 7 days now.
I have been meaning to blog, but to be honest, there hasn't been much time. I always thought that I would have plenty of time at the hospital, because what else is there to do at the hospital? But we are busy at the hospital. For the first 4 days Jackson had to shower 3 times a day to wash off the chemo drug that was seeping through his skin. We spent our time showering, and doing bandage/central line care- and of course playing. But the last 3 days at the hospital, we have simply been too busy playing.

Jackson feels great so far. He literally jumps on the bed for quite a while each day- which makes the nurses nervous, and is completely entertaining for me. We have been building roller coasters, racing remote control cars, playing games, having school lessons, and even making a paper mache' mountain. We have been very busy.

And amidst the busy, Jackson has been enduring lots of things that no kid should have to endure. He has gotten two extremely potent chemo drugs, that we are hoping will be the last chemo drugs that will ever have to enter his tiny body. He got his third bone marrow transplant. Third. And for those of you who don't know, let me tell you... three bone marrow transplants it A LOT. A bone marrow transplant is exhausting to your body, and to have three in a row is destructive to every system in your body.

From this point we wait. We wait for his body to begin to grow white blood cells again. We wait for his Neutrophil count to come back up. We wait and hope that he doesn't get sick.

I have so many emotions connected to this last round of chemo. Yes, it is our last round, and yes, according to Jackson's protocol, we should be 'finished' with treatment at this time. But we are still far from the end. Jackson still has a 100 day waiting period for his body to recover from this bone marrow transplant. And at that point the doctors will order another MRI to see how much (if any) the tumor has shrunk. They will closely watch Jackson for the next several years to make sure the tumor doesn't grow or change at all. And after a certain amount of time, if the tumor doesn't change in shape, size or color, they will declare Jackson in Remission. But that is a long way away, and there are still so many steps left to travel down this road.

I never thought we'd make it to this point, and it feels sort of surreal to have actually survived this far. Now, we just have to endure to the end.


  1. It is so crazy to think how much you've all changed in this short time (that seems like a very long time). We're hoping and praying for you all. I've been meaning to tell you some sites I loved for my kindergarten class...starfall.com and even fisher-price.com had some fun, academic things to do. Love you!

  2. So glad for the update and that thus far he is doing well. I have to admit that I have been anxiously checking the blog. What a journey you have all endured and have yet to endure. We love you all.

  3. So glad for the update and that thus far he is doing well. I have to admit that I have been anxiously checking the blog. What a journey you have all endured and have yet to endure. We love you all.

  4. Yeah for a strong little boy that is strong and brave enough to fight this battle so well. Hopefully soon he will be able to have a huge celebration for conquring the huge dragon. We love you Jackson.

  5. It's kind of crazy to think of everything that has happened in the past year. I keep thinking of the T-shirt Jackson has that says, "I make this look easy." I know it's harder than anything ever should be; he's an amazing boy and you are an amazing family. I love you every day.

  6. You are such a wonderful mom and Jackson is seriously one of my heros. He has had to go through more than most do in a life time, yet everytime I see him he has a smile on his face. I am so glad you have come this far and this is your LAST round! I know its far from over for you but am still so happy for you. Love you guys!!

  7. Wow it's crazy to see how far you guys have come. Jack you are the strongest 6 year old I know! We love you buddy and can't wait to see you once your counts come back up.


Thank you for taking time to comment. I read each and every comment to Jackson and they brighten his spirits. He loves that you are supporting him through reading his blog.