"Up" for Anything and Everything......

A favorite pic of Hunter walking along the beaches of Australia.
One Shadow, One Reflection...........2 Souls.....2 Lives.

(13 Days Post Transplant)

I am terribly sorry for not updating sooner...........but I have to tell ya - Hunter has been sooooo much fun and was full of so much energy - that we were being very selfish with our time. We have enjoyed him thoroughly these last two weeks and have witnessed the little boy that we once had before his illness took him away.

We have had some minor ups and downs, but nothing too serious. He's thrown up blood twice, apparently due to low platelets. He thrown up yuck and phlegm in addition to that, due to some nausea. But the docs didn't seem to be too concerned. His poor little butt rash got worse then better, then worse and now it's better again. At one point his poor little rump was so raw he would scream in pain when we gently cleaned him, which causes him to still not be a fan of baths.....so it's a little bit of a struggle to get him into the tub every night.

He has still not eaten any food on his own. It's now been almost 2 months since he's really consumed anything solid. He continues to be fed TPN through his IV. However, he has maintained his weight - which is fantastic.

He's received platelets almost every single day since his transplant and red blood cells here and there. His "new" marrow is not settled and able to make them on their own yet.......so he'll continue to get them for about another 1-3 weeks.

He has started to walk with help from us....but for some reason - he won't put his entire foot onto the floor. He continues to walk on his tippy toes??? Could be some residual soreness from his myositis, could be the fact that he needs to rebuild that strength or he could just be scared. But he's getting physical therapy on a pretty consistent basis, so hopefully he'll be walking again on his own soon.

So far no other infections, no viruses, no toxicity and no organ failure. All good. However, he did start to get fevers three nights ago, (day +10 - post transplant) and they've continued up until this day. He is laying over in his bed next to me and his temperature is about 103 degrees. This could be signs of engraftment, (his "new" marrow taking over), could be the start of a virus or infection or could be the Leukemia. Most likely it's not the Leukemia. But it's never ruled out. If it is indeed the engraftment, the fevers are considered a good thing - but we are just left hanging in the wind until further things start to surface. Because he received a "cord blood" unit for his transplant, engrafting wasn't supposed to start to kick in until about the 3rd week out. Right now we are only on the 2nd week post transplant. So it's a little troubling - but we are trying to remain optimistic.

He has surprised all of the doctors with his performance since his week of radiation, when he was supposed to be going downhill.........Hunter just kept trudging uphill. He has done nothing but improve on a daily basis by leaps and bounds. So they've assumed that he was so "down" when we started the conditioning that he had nowhere else to go except UP.

So now.......once again......we sit and wait and lay by his side. We smooch his body from head to toe and comfort him to no end. He's up and about in between fevers still having a good time - so we enjoy that and entertain him as much as possible.

I went back through and reread my last 5 entries and wow......what an emotional bag of ups and downs. Three good days, one bad, two bad days, four good.......fear, excitement, anger, appreciation, anxiety, sadness.....what a ride. I am still amazed sometimes as I walk through the hospital halls that this is our life. That this is our fight.....that this is defining our livelihood. I feel at peace right now, but I am forever aware that it could change at the drop of a hat. We definitely have gained some very valuable "life" experience through all of this........and that's a good thing........because we still have an incredibly long way to go. Hunter's road to recovery is going to be the next 3 years to a lifetime. But - we are apparently "up" for it..................learned that from Hunter.