What do you mean Day -17? Wasn’t yesterday -15??? Can’t you count?
There was a bit of a mixup with one of the chemo drugs and they needed to order more. So our Day 0 has moved from Feb 21 to Feb 24. The EXCELLENT news is that the cord blood is here!
Today was a tiring and trying day. We had an early morning at the hemo clinic for Nadia’s kidney function test. This test involves plugging Nadia’s central line into an IV pole and pumping her full of IV fluids. If any of you have ever had an IV pole, you will agree that it is a bain in the butt, well imagine being 2.5 years old. This involves thinking that your life is still normal while your parents run after you making sure you don’t yank the central line out while darting across the oncology/hemo play room full of toys, other kids and their IV poles. Let’s just say Nadia had a great time running to and frow, while her parents had mild heart attacks running after her to make sure she didn’t yank out the entire line.
We then got to go to Nuclear Medicine where they injected Nadia with Tc99m (queue Thor’s excitement as he watches particles dance all over Nadia’s body on the computer screen). To do the imaging they had to strap her in from the armpit down while they put a scanner over her body to watch the Radiation do it’s magic. We were told that most kids fall asleep during this 1/2 hour procedure. We thought ‘great then she will get at least some sort of nap during this VERY long day’ yup nope not our little viking she fought tooth and nail and made sure all children walking into the area knew that is the worst place on Earth and to run for their LIVES. After this was done we had to then go and get a chest xray to get a baseline reading of her lungs pre-BMT. We then went for lunch where Nadia ate like a pig. Chips, pizza and some of daddies hamburger. After lunch we were then back at hemo to get bloods drawn at 1:35 and then at 2:35. These are taken to check the outcome of the renal function after being injected with Radiation. During this time we managed to meet with our Hemo team, to sign papers and discuss the BMT a bit more. It was a bit of a rushed meeting as they were fitting us inbetween appointments of our and theirs. So basically they have consulted with Dr. Argwal in Boston, who is a lead researcher on reduced intesity chemo for BMT paitients with Dyskeratosis Congenita (DC). B/c of Nadia’s disease her DNA is super fragile, like most DC paitients but Nadia’s seems to be even more. So everyone is happy that total body irradiation has been taken off the books for Nadia’s treatment plan, and I think we are more comfortable hearing this as well. It was at this time that we learned about the change of BMT day 0.
So now Nadia’s treatment will start this coming Thursday. I know some people would be pissed about this and it is kinda crappy I admit, but honestly, we could use a few days of nothing to regroup, get Nadia well rested and ourselves before we check into the Hyatt, I mean hospital. 😛 I think they were expecting us to perhaps freak out, but honestly, why? If this had been figured out after Nadia had started then yes, perhaps a freak attack would be warranted, but this is not the case so I don’t think there is a point. The best news is that the cord blood is in the house! whoop whoop! This is something we worried about the most – without this bag of goodness we would be hooped.  So thank-you courier people!
After our meeting with Hemo, we had one more appointment with Audiology. This was probably the worse part of the day. Nadia had had enough, she was EXTREMELY tired and cranky. We have to get her hearing tested b4 chemo, as some of the chemo drugs MAY affect her hearing. To make a long story short, we will be going in on Wednesday and they are going to do a sedation hearing test. So hopefully she passes this with flying colours.
We wanted to do a shout out to another DC patient in the USA who just got his BMT on Monday, he will be doing the same regime as Nadia, and being followed by Dr. Argwal. After a delay with his BMT donor getting the flu, he was transfused on Monday and seems to be doing well. Please add Ryan to your thoughts, love, prayers and waggy tails!
On the lighter side – here is Nadia in her squeeky shoes. A big hit with all the parents and doctors. Thor told one of the docs (a former Engineer) as Nadia was running down the hallway out of sight that “I really like these echo locating shoes because you can tell where she is, and how fast she is moving”.
Oh – and the geneticist said that this definitely comes from Tara’s side of the family.
Nadia making ice cream soup in the playroom.
