Lovingheart

Transplant finally started at 5:45 pm.  I felt like I was sitting on pins and needles before that.  Going out for a walk helped.  Although he didn't admit it, Marlon was worked up.  Understandably. It was a simple process of getting the cells.  Just like any normal blood transfusion except what was put in was less red blood cells.  It was lighter in colour and not as thick.  Less than an hour and a half later the cells are in. And now several hours later his body is reacting.  His legs and his head are hurting.  He is very uncomfortable.  The next few days are the hard part as his body reacts to the invasion. That little bag can change so much…

It is a waiting game.  I am anxious and nervous while I wait.  Though he said he's feeling ok and not nervous, Marlon admits to “waiting”.  There is a build up.  An anticipation. Originally they thought the transfer may happen midday.  The time is scheduled for 4pm. They are fresh cells from the mysterious donor, likely harvested yesterday from somewhere… could be anywhere in the world.  And we wait and wonder.  Will it be a smooth process.  We heard that Marlon has a strong immune system and right now they don't want his immune system to be strong.  They don't want his body fighting the invading cells. Weird tan lines on the head that is waiting...

He beat the odds and did not fever at any time during the ATG.  I have often said he does not fever easily.  He had his last dose today.  I don't think it affected him as strongly.  He does get frustrated being attached to the monitors though. He was able to eat a bit more than he has been lately. I don't know how many times we heard that tomorrow is the big day.  Today is day -1.  Not a lot of room to move around here but he does have this portable cycling contraption.  He sits in the chair and pedals.  

No chemo today but ATG again and that drug kicks butt.  He says his body feels like it is crumbling apart.  He hardly moved from the bed, partially because he doesn't have the energy and also because of all the wires attached to him, keeping a constant check.  He felt feverish at times during the day but his temperature never rose. Definitely not very restful sleeping at the hospital but he did have a better sleep than the night before.  I am feeling a little bleary-eyed myself but count myself lucky that I had a few good night's sleep before this hospital time. I had wondered how young one might be to get a bone marrow transplant.  Then I met a couple whose baby was three months old when he had his.  Though all has gone well, he is now eight months old, and will be going home soon.  He did get out of the hospital on day 17 post transplant but is still at RMH. Transplants can happen for various reasons and for this baby it was a rare genetic disorder t...

A full day of drugs.  They started off giving him a bolus of water.  Over a litre in an hour.  This was preparation for the strong chemo drug.  Extra water keeps the kidneys working to remove extra toxins that come with the chemo drug.  That ran over the course of four hours and left Marlon feeling pretty bad.   Next was ATG, Thymoglobulin.  This ran over the course of six hours and during that time he was being monitored constantly: heart rate, blood pressure, oxygen levels, temperature, and more.  It is very common to spike a fever.  More like when, not if.  At this time, he hasn't yet, but tomorrow he gets more ATG.  He also had tacrolimus, another immune suppressor.  When the new cells come in they don't want his body to attack them as if they were invaders. A rough day for sure.  He feels very bad, has restless legs, and no appetite.  Not much food went down today.  Last night I slept at the RMH and Mar...

After morning TBI, Marlon was admitted to hospital as per the plan.  Now the room he is in will be his home for the next month or so.  A few visits with some of the medical team and we saw a lot of today's nurse.  He went for his afternoon TBI as an inpatient meaning we were accompanied by a porter and the nurse.  We took the underground route.  A longer route, much more complicated, and not as pleasant as being outside.  His last radiation.  Yay.  He has tolerated the treatment quite well.  He has walked back and forth, barely slowing down.  The nausea can be strong at times but he has still been able to eat some. Today is considered day -4.  Tuesday, the day he gets the new cells, is day 0. The carrot is his mascot and his nickname.  He was given the dog as a “radiation buddy”.