Two Transplants

Hi Everyone!

I hope all is well. Grace is having a great day. She vomited this morning at 6am but has been very well and up and out of bed playing ever since. We had a bit of an issue last week with Grace's transplant. As most of you know we were using Grace's umbilical cord that we froze when she was born for the stem cells for her transplant. All initial testing of her cord went really well with it having 3.7million stem cells per kg (2 to 4 million is good) as well as good volume and what seemed to be good "integrity". As a result her BMT team did not put Grace through a stem cell harvest. They "pulled" a back up sample from her hip bones in the OR a few months back but felt that because her umbilical cord counts were so good they would not put her through an invasive harvest. When her umbilical cord cells were defrosted the machine that the lab uses to count the stem cells was unable to confirm the count taken back when she was born of 3.7 million per kg. As a result the lab tried to do a manual count and found that many of the stem cells had clumped together. Her BMT doc was very concerned and ordered that the back up sample be defrosted and infused. They hoped to split the back up sample in two so that they would still have a back up to the back up but this was impossible since the counts on the back up were only around 1.6 million per kg. I was very upset and nervous about this because I'm now in fear that if Grace does not engraft (the transplant "takes") then we will have nothing to then turn to. Grace's BMT doc felt that it was much riskier not to use the back up right away. As a result.... Grace had a transplant on Wed. and again on Thurs. so if your counting today would be considered day +4 not +5. Please pray for Grace to engraft. I was told that only 2 other children since '88 have not engrafted using their own stem cells but both had viruses on board which Grace does not have (knock on wood). But considering the odds that we were given about Grace's tumour being benign (99%) which was obviously wrong... you can understand why I'll be a mess until Grace engrafts. Of course there are lots of complications around transplant but we just need to pray for the best. We've heard that day +6 to +9 are the hardest but as you all know Grace doesn't follow the same path as others so well keep you posted.

Keep praying for our babies return to good health.
Les

BMT has begun

Hi Everyone,

It seems like before I can blink another month has passed without an update. I'm sorry that I can not get to the blogger more regularly, but with Ian still working my days are very hectic caring for Grace.

So where to begin??
Grace's blood transfusions on Feb. 20 went well at CVH. On Feb. 21 my mom and I had Grace at Sick Kid's for the day to complete preBMT testing. GFR (kidney's), hearing and dental all went well. She spiked a fever of 40 on Feb. 22 so we admitted to SK. Her bloodwork showed another blood infection (same bug as last time) so it's really inconclusive as to whether it is a reinfection or recurrence but either way she was once again started on her numerous antibiotics. The small lumen of her CVL blocked so we had an XRay on the 23 to ensure it was positioned properly, which it was so they put an anticloting agent in it for a few hours which resulted in it working again. On Feb. 24 she needed platelets again and her antibiotics were changed to be more specific to the exact strain of the bug in her blood. Saturday the 25th she needed another XRay to investigate a cough that she had over night which also came back OK. Her stool was looking suspicious on the 26 and was sent for a culture which also came back OK. On Mon. 27 she had an Echo (ultrasound of the heart) to ensure the bug in her blood was not effecting it's functioning since it has been known to do so. Again... Echo OK... all is well. On the 28th Sick Kids arranged for Grace's IV antibiotic's to be administered via a portable pump so we could be discharged and spend some time at home prior to BMT. Due to the long course of antibiotic's required, it was confirmed that her BMT would be postponed by a week for admit on March 12 instead of March 5. As a result we spent 10 FABULOUS days at home with only 2 of these days spent at CVH for blood. Grace was eating well, starting to take steps independently, she even played in the backyard. We loved our time at home!! Unfortunately, the delay in our admit to BMT due to Grace's blood infection meant that we lost the bed that they had scheduled for us on 8B (Bone Marrow Trasplant Ward). So Grace's BMT is taking place on 8A (oncology ward). I'm really not happy about this because much of the isolation that Grace was to be under is difficult to achieve on 8A. The doctor's feel that it is safe to do the transplant without this isolation because Grace is receiving her own stem cells and there is not a risk that she will reject them. Unfortunately we had to either accept her transplant being done on 8A or postpone her transplant which in the doctor's opinions is more risky. Today will be Grace's 4th of 6 days of mega dose chemo. The first 3 days were hard because the drug that she received for these days required a catheter in for a 12 hour urine collection prior to each dose of the drug administered. Sunday night after 6 attempts and 2 teams of nurses they got a catheter in Grace and started collecting urine at 7pm. Unfortunately this catheter fell out at 11pm and after 3 more attempts and with the help of a nurse from the urology wards help, another catheter was inserted. The catheter insertion was one of the hardest things to date... Grace was just devastated by the process as were we. Since the catheter came out and a continuous 12 hour urine collection could not be achieved by the labs 8am cut off, Grace's chemo was delayed from Monday to Tuesday which also meant the catheter had to stay in for an extra day. Good news is that the catheter came out yesterday and we do not have signs of a urinary tract infection yet (knock on wood). Bad news is that the drug that she had over the last 3 days has shown a decrease in kidney function (decreased creatinine clearance... test performed on the urine that was collected) so Grace can no longer receive any drugs that are hard on her kidneys outside of her chemo. This means many of the antibiotics used when she spikes a fever. The doc's will use different antibiotics that are not as effective but are better when they are trying to spare a child's kidneys from toxicity. The doc's also mentioned that when they see this effect on the kidneys they often also see a detrimental effect on the child's hearing. But what can we do?? We must worry about the cancer first and everything else second. Today Grace starts a new chemo drug that she has not had before. Other mom's have told me that when they pee this drug out is results in them getting what is like a sun burn on there bums. As a result I started a very intense "bum regime" as soon as her catheter came out. Barrier spray with powder chased by loads of zinc cream. I've started cutting up receiving blankets to wipe her bum instead of baby wipes. Hopefully all this helps because with all that is going on, the majority of Grace's discomfort in the past has been when her bum is sore (as a result of mucacitis). Well that's it. Our plans for the next few weeks are:
March17-19 new chemo + VP16
March 20-21rest days (clearing chemo)
March 22 Transplant
March 23-April13 (approx..) strict isolation (as strict as we can get on 8A)
April14 -End of May letting Grace's counts recover.
June... Home??

Keep praying for our baby return to good health.

Love,
Les

P.S. Thanks to all of you who participated in the bowling fundraiser. It was a huge success and helps us enormously during this very difficult time.