Day 90

John is still in Brigham and Women's hospital in Boston.
6 weeks now...
John has been making some recovery; an infection set him back a little and the Graft Versus Host Disease is being slow to heal despite the steroids which should aid his body is recovering. John is no longer having fevers or vomiting but his gut is still very damaged and in need of repair.
Doctors are trying a new treatment this week called Photopheresis.
These last 6 weeks have been filled with ups and downs and what keeps us going is knowing that the transplant has grafted and this current episode should be temporary.

God is indeed our strength.
John and I have grown closer to God in this time; we have taken all our worries, concerns, and pain to God. His shoulders can carry the burdens that weigh us. He can break through even our deepest fears.
We remain hopeful...

Day 70

The doctors have now officially diagnosed John with acute graft versus host disease. The treatment began an hour after the diagnosis was made. He will be on a course of steroid which will calm the battle down that has caused John's sickness. He will then be tapered off them as his body grows stronger. I wish I could explain that better but I am not a doctor lol
It's been a tough 3 weeks but it's nice to think John may be home in a week.
We are unsure at this point how this set back will effect the overall success of the transplant. Only time will tell. For today we are pleased to have some news.

Day 66

Thank you so much for all your prayers and encouragement during what has been a challenging 3 weeks. The last update I mentioned that John was sick. The next day we took him to ER because he began to run a fever. Since them he has been in the transplant ward at Brigham and Womens Hospital in Boston. They have been doing many tests and many diagnosis ideas have been presented and then proved to be incorrect. Although his fevers are down and he is not vomiting, he still have extreme abdominal pain and is passing blood. They have him being given nutrition through a pick line and he has not eaten all week.

On a positive note the Chimerism test showed that the bone marrow graft has taken! A piece of good news that tended to get buried with John being so sick but one that has encouraged us greatly. We praise God that he has begun his healing.

One thought for John's current sickness was graft versus host disease, which would be the graft cells attacking John (more specifically the donor's T cells). However when they repeated the chimerism test earlier this week and it showed a slight decrease in Ian's cells. They would expect to see an increase if it was graft versus host. This is potentially very scary as John's immune problems center around his T cell deficiency so we are praying and are asking you to pray along side us that Ian would begin to make more T cells and that John would in turn have normal levels.

Right now Doctors are testing  for micobacteria and more exotic infections which John is presupposed to because of his immune problems.

I wish I could tell you more but we await healing.
We trust in God above all, he is our doctor and healer. Please pray for us. This has been a scary and emotional time. I (Amanda) miss John terribly and fear the future but know God has something amazing up his divine sleeves lol :)

Day 48

"For better or for worse, huh?" John says to me as he lies there feeling nauseous.
The last 3 days have been hard. John has been very sick, lots of tiredness and dizziness, vomiting and other unmentionables. It's been pretty miserable. Very hard to see him this way.
We think it's a side effect of one of the drugs he just began taking so we think the doctor will take him off that this week. Next appointment is Wednesday...please keep us in your prayers.

Day 43 (Wednesday 16th February)

So we still await the results of the chimerism test, we hope by next Wednesday we will finally know!

John's doctor today said all of John's platelet and white cell counts are "fantastic" and this quick rise back to having healthy counts is indicative of there being some healthy bone marrow working in him; but is it Ian's or John's?

It seems highly unlikely that John's immune system has any strength after the chemotherapy but we are trying to just wait for celebrations until we have the official test results.

John is doing well, back to feeling very normal. He has begun to get up with me when I go to work and has begun to work on some of his ministry teaching as well as brushing up on his Saxophone- He is hoping to begin composing new music this year so perhaps when this is all over he can do a concert! He is also learning electric guitar and begining to play the flute again- He will be quite the one man band.

As for me (Amanda) I am with YWAM everyday, even though my wonderful DTS students have now left to go on outreach. I am helping out around the base, mainly this week with hospitality. We have a youth group from New Jersey visiting this weekend so we will be training them in Evangelism and then hitting the streets with them! On Monday I will get a day of rest with John :)

It's hard to believe it's been 45 days since transplant, at times it has seemed slow but these past 20 days have flew by. God is so good, he is with us.

Day 35

Today was a very long day at the hospital! John is part of a clinical trial as well as everything else so we ended up sticking around for extra appointments till after 4pm; we arrived at 9am. Fortunately I was able to break him out for a couple of hours so he could go home and eat and rest.

We should have had the results of the chimerism test today but alas we have to wait a little longer.

John counts are good and back to normal human levels! the doctors described his counts as "spectacular!" Platelets are 161,000.

John feels good, apart from being tired from a long day.

Day 30

I apologize for the long pause in updates, in all honesty not much has happened. John has been tired and achy but has managed to get good rest. We are meant to go on Wednesday to have another count and give blood for the chimerism test (the results of which take a week), but the snow trapped us so John went today.
His platelet counts and other counts are great! Now back up to 116,000 and white cell count has gone up. This is all normal and is no indication as to whether the transplant is working.
We are excited to have the results next Friday; we live and pray in hope that it is starting to work!
We will update you when we know...
One bonus of his count now being above 50,000 is that he can finally shave! No longer will I be married to a porcupine! :) Yay!