Lovingheart

Two weeks between hospital visits.  In no time, it will be three months. He didn't sleep well last night and there is a brief moment of concern when he looks off from lack of sleep.  But then I realize there is no need to worry.  We all have off nights.  Speaking with another mom whose son went through similar treatment.  She said it took a year before she could be ok with the colds and sickness and not feeling a sense of concern. Since he has a new system, his immunity has to rebuild.  He had a strong immune system to start.  We'll see how he makes it through the winter months especially once he is out and about more. I have been keeping very busy.  Marlon has commented on that a few times, wondering how I will be once back at work.  There is still so much to do.  After not having been organized for several years, there is catching up to do.  And always stuff to be cleaned.  And dogs to walk. Lovely Christmas cactus in full bl...

Just over a month since we have been back from Toronto.  So much has happened since then. Another hospital visit and all is well.  For blood work at his visits they have been using his PICC line.  Because he no longer has it (he is so relieved the line is gone), he went to finger poke this morning.  He waited around for 45 minutes (they were doing other things, not helping patients) only to be told he needed more blood work than just the CBC (complete blood count).  Up to the clinic and they sent him to the out patient lab. I was frustrated by the wasted waiting time but they were good at the clinic and moved him through promptly. He needs extra blood taken for the virology - to test the Epstein-Barr virus.  So far it has pretty consistently been positive but not a high level so no cause for concern They still haven't received approval to give him the dasatinib so he is starting on imatinib.  He will be on one of these two chemo drugs for the next year...

The big news from today is that he had his PICC line removed .  That video was the line being pulled out.  It is an operation to be inserted but an easy out. Afterwards he was swinging his arm around, thrilled it was gone.  He had to agree that any time they need more blood tests than a simple finger poke can provide he would get an IV poke. A very minor rash but he is now off tacrolimus, the immune suppressant drug.  We're hoping for the best.  They are still waiting for approval to get him on the chemo drug he was on before transplant.  That will likely start next week.   They are very careful of rashes.  Pushing sunscreen whenever he is outside just in case sun and a GVHD rash can be confused.  GVHD is a symptom of transplant they watch for but they're aren't any tests or sure answers to prove that it is GVHD.  A lot of watching and experience. Closer all the time to a full, “normal” life.  Is there any such thing as normal?...

I struggle throwing stuff away.  What if I need it?  It may come in handy… When the older two were younger, I would notice a toy they hadn't played with in a while. I would privately plan to remove it.  Without my having touched it or mentioned it, they would start playing with said item again.  I have been trying to be more ruthless and just get rid of more. Today after our visit, the doctor called and told me Marlon should start using this particular cream again.  She didn't say it but she might as well have said, “You know that cream you just threw out, that's the one you need.” I have a bag of unused medications to bring back to the hospital but that cream was garbaged.  Argh This cream was something Marlon did not like to use but the doctor today noticed a possible rash.  Because GVHD can still happen and maybe even with greater likelihood as he weans off tacrolimus, the immune suppressant, he is being monitored for potential symptoms. Other than ...

One of my dogs had a run in with a porcupine.  Ho hum.  Luckily there were not too many quills (19 to be exact).  I thought Marlon and I might be able to do it together but it was a bit too much of a struggle.  I dragged Marlon and the dogs to the vet.  Marlon and I held Mina down while the vet removed the quills.  At least she didn't need to be sedated but the poor dog wasn't happy. Pan has been hit by quills twice, both in the spring this year.  It seemed he understood as he kept going over to her. I’d like to hope the dogs have learned their lesson but only time will tell.  I'm glad that Marlon was able to help.  I have online access to Marlon's blood work and today was looking at a recent one that was showing various lymphocyte markers.  I didn't really understand what I was seeing but I have to believe all is moving along as expected.  It sure seems to be Amazing colours this evening.

Another uneventful hospital visit.  It won't be long now before Marlon only has to go every three months. Last night P had Marlon pull a tick out of him.  The spot on his underarm looks red and worries me. While we had already been waiting at the hospital for a couple of hours, Marlon showed me his mask and there was a little tick crawling around on it.  Yikes!  That probably came from home.  The disease that ticks carry scares me and there are so many around.  They can cover a lot of terrain and walk pretty fast too.