Lovingheart

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”.

He did ok today.  Definitely second half of the day is better for him.  Having to get up and be somewhere when he isn't feeling well starts the day off poorly. Appointment this morning at 815 for his first TBI.  Pretty smooth and then on to hospital to get topped up with liquids and  more anti nausea medication.  While he was there, I checked us out of the hotel and into RMH.  A big facility that is amazingly well organized.  The frustrating issue is that Marlon can't be left alone in the building.  He is only in it today but in a month's time will be for about a month.  Under normal circumstances, he tells me what he is willing to eat, and I go get it.  I go for walks and he gets time away from me.   No sense in worrying about it now. Have I said how much I am spending on food!?  His appetite is quite poor so I am often buying things that he thinks he may be able to eat.  I am wasting a lot more food than I care to w...

A nice sleep in the hotel room.  Appointment for first TBI (total body irradiation) was at 820.  Good thing we were close by. Straight to room 15.  Over an hour by the time he was marked up, properly positioned, and zapped.  He lies on his back with head to the side and almost one third of his body is done at a time, top (including head again), middle, lower and then a little patch for his feet.  He flips over onto his front, and same thing again. Walking across the street to sick kids afterwards, Marlon said it's a different level of feeling sick all over.  He felt bad but was ok.  To the hospital where they pumped liquids (saline water) into him to make sure he stays well hydrated.   By the middle of it, the radiation caught up with him (or was it the large quantity of liquids), and he felt really bad.  Nauseous, uncomfortable, and sick. While there though, we did get news that we now have a spot at the RMH.  Somewhere to sleep to...

When Marlon woke up this morning, he was a little queasy with no appetite.  When we got to the hospital we bought him a smoothie and that did help.  Dressing change, blood work, and they also gave him a stronger anti-nausea drug, partially in preparation for tomorrow. I had asked about why they chose an unrelated 100% donor instead of a 50% related one (the question kept ruminating in my mind).  He did say several factors go into the decision.  We did hear Marlon's donor is a 20 year old male with the same blood type.  If they go with a 50% match only, there can be more issues and it requires more chemotherapy.  Hearing more chemotherapy and more suffering was enough to put my mind at ease. We ended up sitting around waiting for test results which never came.  So we went across for Marlon's final cranial radiation. Afterwards he was given his mask as a souvenir.  One of Marlon's friend's family gifted us a stay at a local hotel for two nights....