Day 196

Amanda ready to attack the basement!

We like short clinic days! Under 2 hours and we were in and out.

John's counts continue to look "amazing" in the words of John's nurse. The only slightly sad part was they had not drawn blood for the Chimerism test yet and won't be till our next visit in 2 weeks! So we have to wait longer for more great news but everyone still seems positive as the counts are so good!

Now we have 2 weeks of NO hospital visits! Hopefully :)

I thought we should share this photo as it's very funny! Amanda taking no risks cleaning up some mold in our basement from a little flood! Good news is it's all bleached and cleaned up!

Day 192

John feeling much better

He is home.

After just 3 days in the hospital John is allowed home. The good news is before he left we found out his white count had doubled! His abosolute neutrophil count (anc) is now at a level the doctors wanted to see! (Neutrophils are the bodies first line of defense). I am unsure if he had these, or if these functioned before transplant.

John has had no more fevers and is much more like his old self :)

There is much to celebrate but still much to anticipate and wait for. Let me explain... John has always had white cells, when I say always I mean before transplant. His issue has been dysfunctional T cells and an absence of B cells. We had the transplant to fix that, we do not know if it has fixed that yet; we may know a little more about when the Chimerism test comes back. Perhaps 2 weeks wait on that.

We are excited though but anxious to hear more news. Obviously it's great news that his counts are going back up but we hold out to hear whether the transplant is fixing that particular thing; the thing we really need. 

Please pray for us, in the wake of many pieces of good news it has been easy to get swept up in it and forget the big news is still to come. He is NOT fixed yet; right now he is getting better and healing from many infections and the transplant, but the most important and big news is to come.

Day 188

John with his giant platelet!

John was re-admitted to Brigham and Women's Hospital in Boston yesterday with a 103.5 fever and a suspected bacterial infection. 

Last night and today he has had no fevers.
He is on 2 antibiotics that he will come home on very soon, providing no other fevers arise.

The good news is the counts are still good! To celebrate I got John a plush stuffed platelet! (Platelets are what clots your blood to stop you bleeding when you cut yourself). John spent many months not having too many of them! He nearly have the normal amount now! Hurrah!
Doctor's drew blood for another Chimerism test today and that will be the confirmation of whether the boost is definitely working! All signs point to very good news in that area!

As heart breaking as it was take John back to hospital we know it was a good decision, he obviously needed antibiotics.

He could be home as early as tomorrow! O how I hope!

Day 186

Photo taken by John's Mum- July 2011

I am amazed by John's ability to sleep.

This week I have barely seen him awake! He has been fighting an on and off fever for over a week now. It seemed to subside for the early part of the week but since Thursday it keeps popping it's head back. Today was not bad, highest temp was 100.6 which is low but is indicative that he fighting some kind of infection. All tests done last week at clinic were negative.

So since Thursday I have been staying home. Making sure he eats, drinks, takes medications etc. I really love taking care of him and although I miss my team that are doing outreach for 2 weeks I don't regret for a second choosing to stay with John.

My hope is that I can return to work tomorrow or Monday, probably Monday as would like to see John have one whole day without any fevers before I leave him.

I miss him so much when I am at work, it may sound dramatic (which I am prone too) but I feel like half of me is missing when he is not with me, I know God called us into ministry together and being there without him just feels wrong. 

God knew about this year.
He knew the challenges we would face.
Hope we have more good news soon....

Day 184

Everything is still looking good, doctors smiling and the science is starting to show God's promise to us.

John's fevers cleared up last week but unfortunately resurfaced today. Trying to keep him home and rested and well hydrated; our only option.

Next week the doctors will draw another Chimerism test which should reveal more conclusively how much the boost has worked. And in the next 2 months John will begin to be slowly tapered off his medications which prevent transplant rejection; scary times but it's all looking very positive.

Hope is what has got us this far, hope in what God has spoken to us. Hope is scary though. The counts going up fills us with so much joy but at the same time there is apprehension, "Is he really going to healed?" That question means so much it paralyzes us, "could we dare to hope?"
I know often God's promises don't look the way we would wish them too sometimes but at the same time I know I cannot deny all He has said.

Our decision in the end was to simply declare that today was a good day and let's see what happens tomorrow. For right now John is home and all looks well, fever aside.