Back in Vancouver

Yesterday Joel had blood work done first thing in the morning and then we sat around waiting for the results which seemed to have gotten lost in the system.  No one was allowed to touch the phone.   I had made plans the day before to quilt with Kelly, knowing full well that if I made plans Joel’s counts would definitely be up.  I did not pack or get ready to go as I did the previous few weeks since I was tired of unpacking.  After lunch Grant phoned Children’s Hospital again but they were still looking for his long lost results.  Finally they called. 

Hemoglobin – 126

Platelets – 377

White blood count – 4

ANC – 1.96 (way up from 0.03)

So I madly packed.  Said goodbye to my boys and Joel and I headed to the coast.  Joel drove most of the way and we were entertained by “The Hobbit” on CD.  At some point I did remember that I really should phone Kelly and cancel quilting but I was already several hours down the road and I figured she would understand.

When we got to RM House there was a card and a gift certificate for The Keg for Joel.  Thanks Gramma, your amazing!  I think he'll wait to use it until Grant is down with him in a few weeks.

This morning Joel was up early and feeling adventurous so we went out early and did a little shopping.  He wanted to go exploring but we didn't have much time.  This is a house we pass often in our travels down here.  It reminds us of fairy tales and make us think there is still some magic around. (Or we have just been listening to way too much Tolkien and we think it looks like a Hobbit house) 

 Joel quickly checked his emails before heading in for his procedures. 

Before heading to the hospital we stopped at Whole Foods so he could pick out a meal.  It was noon and he was starving by the time the bone marrow and spinal tap were finished.  I wonder if he remembers eating it or if he was still so drugged up that I could play trick on him now......" no, you ate all your chocolate first.  You didn't save any of it...."

At the beginning of December Joel agreed to take part in a cancer study.  There were two arms of the study, the first being  that he would receive the standard treatment for leukemia and the second being that he would mostly receive the standard treatment but one part would be modified.  He was randomly put onto the second arm.  He is now at the part of the treatment where he would receive the modified version,  high dose methotrexate .  But now the studies have shown how highly effective this treatment is and it is now the standard treatment given to all patients. 

 He had his bone marrow biopsy and spinal tap this morning, samples will be sent to the States to be tested and we should have the results in about a week or so.  He will have several kinds of chemo today, vincristine, 6MP and spinal methotrexate.  He will be hydrated for 6 hours and tonight he will start on the high dose methotrexate.  He will be monitored closely and then after 24 hours he will be given the antidote for it.  This sounds really cool in a story or movie but in real life.... not so sure.  He will have to stay in hospital and continue to be hydrated until they are sure that most of the chemo has flushed out of his system, 3 -6 days is what it normally takes.  If all goes well, we are hoping to have him home by the weekend.

For the next while, he will not be allowed to do much.  Playing guitar will blister his fingers, opening water bottles will do the same to his hands, even typing on the computer or using a pencil  will have the same effects.   He will have a great excuse for not getting his homework done.  Walking may cause blister on his feet.  He is supposed to drink lots of ice water so that the blood vessels in his mouth and digestive system restrict in order to lessen the the chance of getting mouth sores which is the most likely of the side effects.  I have been told that blood count might drop but it is a lesser side effect as are seizures and signs of stroke.  Joel is taking glutamine to help prevent the mouth sores and the Dr. just told us that some people say that vitamin B6 helps with the side effects. 

Joel is sleeping right now which is probably a good thing.  He will be woken up every 2 hours over the next few nights.  I should be sleeping too.  I have so lost my groove.  I am forgetting things left, right and center.  I caused someone else to be angrily honked at in busy Vancouver traffic this morning.

Today I am thankful for chocolate covered honey (my new favorite), a small car in a big city, Joel feeling adventurous again, and mostly for the families at RM House who have been thru this all and can tell me what to expect and what questions to ask.