Sebastian's first boost happened on February 21st. He was admitted the night before and given a pass so we could sleep at home. We were back at 9am the next morning and the nurses started two IV's on him. One for the donor boost and one as a reaction line in case he had a reaction to the donor blood. We opted for one in his hand and one is his foot so that he could still use one hand to play and eat. Child life came in and did some amazing distracting while the nurses started the IV's and then found him an awesome 'car' wagon which we couldn't get him out of! Once the IV's were in he was started on fluids to help hydrate him and flush his system. He was given a few medications in preparation for the boost, and then we waited.
The donor blood came up from the lab frozen and had to be carefully thawed in order to try and preserve what we didn't need for another boost. Once thawed the amount given was so small! He was given less than 10ml and it was pushed in from a syringe in under a minute. He received the boost just after 1pm and he slept through the whole thing. We were told he was given 10,000 cells per kg. He was given more fluids after in order to flush the cryopreservatives that are present in the donor blood, as they are extremely hard on the kidneys. We stayed until just after 6pm and were sent home.
We had to wait three weeks after to do the blood test called a chimerism which tests the percent of donor blood present in Bash's body. He had weekly clinic visits with regular blood work to check for graft vs host disease. After the third week, we waited another week and a half for chimerism results. They were not quite what we had hoped for. His B-cells dropped more. He started at 74% before the boost and they were now 67%. Our oncologist decided another boost was our best choice and Bash was scheduled for his second boost for April 3rd.
We had lots of fun in between boosts, we took Bash sledding, had family visits, got his hair cut for the first time, enjoyed an Easter away in Banff - our first official holiday away as a family since diagnosis. And much more. We also welcomed our adorable new niece Nova Lynne to the family!
April 3rd went the same as the first boost. We were admitted the night before and given a pass to sleep at home, then return in the morning. This boost was significantly more cells as it turned out the viability was only 8%. Our oncologist did not have high hopes that this boost would do much, but wanted to take the chance as it is better than doing nothing. The amount Bash received this time was 1,000,000 cells per kg. and it was hung in a bag this time - approx 200ml and given to him over two hours instead of under a minute. He then had his fluid flush and the cryopreservatives were much more noticeable as Bash had a distinct 'corn' smell. We didn't leave the hospital until 9pm. We were given the option to stay overnight which we (happily) declined and looked forward to climbing into our own beds after a long day.
Sebastian has his first clinic visit tomorrow post second boost, and will still be seen weekly. At three weeks we will repeat the chimerism test. Our oncology team has already started the paperwork to contact our donor as they would like to give Bash a third boost of fresh donor cells in hopes we can get those B-cells climbing again. If the donor is willing to donate then we will hopefully be looking at another boost in approx 2-3 more weeks. We will not wait for the chimerism result but will still be hopeful that it has helped.
The waiting is hard, and the not knowing is even harder. I heard a quote recently that really spoke to me, "Sometimes when you are in a dark place you think you've been buried, but actually you have been planted."Bash has been energetic, happy, and is loving life - except for those terrible two's that seem to be creeping in here and there to keep us on our toes!
I want to take a moment to acknowledge the devastating tragedy that happened over the weekend with the Humboldt Bronco's. It hit close to home, not just because we are from Saskatchewan but we had family on that bus. Thankfully he is going to make it, my heart is heavy knowing so many didn't. We are thinking of you, your team mates and your family Bryce. We are sending all our love and prayers to you and to everyone involved. #HumboldtBroncosStrong #TeamBash
