blood draws

Chemotherapy & Blood Transfusion

We are on day three of four days of chemotherapy and Keira is doing great! Still eating well, sleeping as normally as she can between blood draws, has great color and is being her usual happy self!

  • Some PT time with Marina

Yesterday was a MUCH better day in thanks to a nurse named Marino who came in and got an IV placed in Keira’s foot in 5 minutes by herself! She’s my new hero after the IV debacle the first day of chemo.

They say Keira could start losing her appetite this week (so far so good though) and that the side effects of chemo (mucositis, hair loss, vomiting, etc.) won’t not occur until day 10 or after.

They’ve been leaving us to ourselves most days aside from nurses bringing in medicine, taking vitals and the physiotherapists coming in to “play” with her once a day. It’s not until the evening, after chemotherapy, that they need blood draws every two hours (in order to determine the next dose of Busulfan needed). Since tomorrow is the last day of chemo, tonight is our last night of blood draws (then hopefully we can get some sleep)!

One new thing on the schedule today was a blood transfusion, which they say is normal. Because of the continued blood draws during chemo they need to raise hemoglobin levels and this is how they do that.

Reading books while getting her blood transfusion.

Many have been surprised that chemotherapy is part of gene therapy at all but the reason is they need to weaken the immune system and make room in the bone marrow for the renewed stem cells with the corrected genes and ARSA enzymes which will be administered via IV through a virus (with the bad parts of said virus removed) in the gene therapy treatment on Friday. Once the new cells go into her bloodstream they will travel to the bone marrow and begin making new red and white blood cells. From there they monitor her closely as levels begin to increase and then she will hopefully live a long and happy life thereafter!

It’s honestly amazing this is even possible, and we are clearly so glad it is. The entire process is fascinating. I’ve always thought if I could choose another profession in another life that being an archeologist would be fun but now it may be a doctor doing this; not only because it’s a truly mind-blowing process but more so to be able to change the lives of so many children and their families like they are doing for us. Our world is changed for the better and we are so grateful.

Up next: Keira’s “rebirthday” on Friday, October 2nd! ❤

Chemotherapy for Keira

Well. This day did not go as I expected.

I was nervous for chemotherapy to start mainly because of the upcoming side effects but really didn’t know what chemotherapy itself entailed. And I ended up finding it, thankfully, very anticlimactic. They put the syrgine of Busulfan in the machine and in it went to her IV over the course of 3 hours. She didn’t notice a thing and that was that. Major relief!

The blood draws to follow, however, were a completely different story.

We have now been through SEVEN failed attempts to place an IV in one of her arms.

First, let me share the point of this. While they could easily draw blood from her central line, since that is where they had to run the Busulfan through they needed another vein or entry point to draw blood for the following regular checks to ensure the Busulfan was doing what it was supposed to in her system. Pulling it from the same line the Busulfan went in wouldn’t provide accurate numbers.

So, a team of 3 nurses came in to place the IV in her arm. On the third attempt by the same nurse she got it but then looked away for a second and let Keira’s arm go; allowing her to bend her arm WITH the IV needle in it. My jaw dropped. I wanted to faint. After getting the bleeding to stop she immediately tried again to no avail. I was furious. They could barely speak English and all left the room without saying a word.

One of them came back with a new nurse a few minutes later, letting me know they would need to try again. To which I was able to explain it would NOT be done by the same nurse who did the first 4 attempts. They agreed that was fine.

Attempt number five: three people from that team (minus the initial nurse) all made an attempt (with the same needle). No dice. I’d had enough.

Attempt number six: I, of course, had just gotten her to sleep after her traumatizing evening when the night crew came in to do the 9pm draw. I will preface this by saying I really like the night crew because Keira was so taken by them on our first night here. While they were able to get the blood they needed the line wouldn’t stay.

Because additional draws were needed at 11pm and 1am they would be back again for the next attempts.

So here Keira and I await them while she plays, laughing in her crib. THAT sound, and the end result of all this, makes the rest fade away. On to the next day…