The Hardest Part is the Waiting

I will try to do a post sometime about the technicalities of the stem cell treatments, but in the meantime I thought I would do a quick update on how Fletcher is tolerating everything. In a word: spectacularly. I've always known my little guy was pretty special, but he has really been a dream throughout this trip, treatment-wise and otherwise.

Fletcher had his first umbilical cord blood stem cell treatment on Monday. They do the first treatment via IV, so in case something unforeseen happens (allergic reaction and the like) they can stop it quickly. Fletcher is no stranger to needles, and unsurprisingly, he doesn't like them, so I was a little nervous about the IV placement. He cried all of 30 seconds, if that. I have video proof (I considered posting it, actually). I have a feeling he will protest a little more next time as he will know what is coming.

The IV room is a little room right off the nurses station (which just happens to be directly across from our room) with two big cushy recliners. Two nurses worked to start his IV. I am cutting the and pasting the description of what happen next from Drew's blog, as his mom is a nurse and has the lingo down better. I'll even format it as a block quote so you don't think that I could actually come up with such a great description (thanks, Kristin!):

Once they place the IV, the 500ml bag of "Dextrose and Saline" is connected. Then they push what is referred to as "the anti-allergen". Due to my height advantage here, I found out last time that the anti-allergen is Decadron, a steroid. The small bag of stem cells is then infused into the line. Each treatment contains between 10-15 million stem cells. Once this is infused, the nerve growth factor is hung. Nerve growth factor is extracted from the umbilical cord serum and it's duties include to encourage growth/repair of neurons and it also enhances the potential of the umbilical stem cells that are infused. After this patient is allowed to return back to their room, while the final flush bag is infusing. This whole process usually takes around forty minutes.

Trevor was being goofy with the video camera (go figure) and got this action shot of the stem cells traveling down and into the IV. As usual Trevor's entertainment value is scoring points with the staff and other patients.

The IV infusion was just a warm-up for the main attraction, however, which is administration of the stem cells directly into the cerebral spinal fluid via lumbar puncture. Needless to say this part of the whole treatment gives me the most pause. The preferred method of administration is to push di.azepam through the IV to make the patients comfortable, administer local anesthesia to the injection site, and do the procedure up on the 20th floor. However, for patients who can't stay still or get too agitated, a trip to the OR and a date with some fen.tanyl is in order. This is not as ideal because the OR is down on the 3rd floor and a little more "real China" then our oasis up here on the 20th floor stem cell unit. Plus general anesthesia and all that goes along with that.

They asked me if I thought Fletcher would cooperate and, frankly, I had no idea. That kid is a mystery. Like I mentioned before, he cried less than 30 seconds when they started his IV, yet pitched a colossal fit when the nurses said "bye-bye." So the plan was to try the preferred method at 1:45 this afternoon, and if he put up too much of a fight, they had a back-up reservation of the OR an hour later. His IV from Monday was still good, so we didn't need to place another. They administered the di.azepam in our room, and then wheeled him out in his crib across the hall to the Stem Cell Transplantation Room, where Trevor and I had to wait at the door. That part was hard...

But it was not the hardest part. Luckily all went well with the procedure. We heard a couple small crying fits which we believe was Fletcher (his cry seemed a little lower-pitched either due to the fact he was behind closed doors or maybe because he was drugged up) but the doctors were able to hold him still and complete the procedure without the need for general anesthesia. He was gone maybe 30 minutes total. Which means (praise God) the hardest part was waiting the six hours after the procedure before we could pick Fletcher up in order to avoid a spinal headache. All things considered, that seems not that difficult. And, relative to what could have happened, it wasn't. But, if you know Fletcher, you know that laying still, head flat with no pillow, on his back, in a bed, WITHOUT BEING HELD, for six hours is not exactly in line with his demeanor. Long story short, he lasted about 50 minutes before we had to give him a little more di.azapam to take the edge off. And even then Trevor had to break the rules a little and hold him (very horizontally) for about 2 minutes to get him to sleep. Luckily he slept for a bit over three hours, so that helped immensely. The rest of the time we spent doing things like this:

And when he woke up, boy was he hungry (he couldn't eat 6 hours prior and 4 hours after the procedure, but because of the timing of his nap it was almost 12 hours from when he last ate). So Trevor is feeding him a bucket of rice while I type out this post and I have a feeling that we are in for a late night.