I don’t want to write. I need to write. I think I need an echo. My heart has to be in rough shape.
Gregory had his Bone Marrow Aspirate on Tuesday at about 1:00pm. We won’t know any results until later Wednesday, at the earliest. We have several different tests that are being performed and some of the results won’t be ready until, most likely, late next week.
The last few days have been a whirlwind. My emotions have been riding that roller coaster, again. Saturday he received his Red Cell transfusion. As the nurse was hanging the bag of cells, I couldn’t help but cry. Seeing that red bag felt like defeat. Gregory’s last red cell transfusion was at sixty days post transplant. We are now nearly eight months post transplant. Add to that the fact that he is throwing an abnormal number of Monocytes and Myelocytes in his White Blood Count. Using doc’s words “…..it doesn’t look good.”
Add to that the fact that Gregory has been experiencing days of feeling really good and days of feeling really bad. His gut is still giving him troubles. Not tolerating feeds, frequent & unpredictable heaving, not tolerating meds. Saturday night he experienced a huge migraine. It took quite some time to get it under control, too. Monday night he started having burning, loose stools. Burning enough to use oxycodone for pain. He also has been hanging on to Phosophorus. Which can lead to kidney stones. He is now on a 3x/day dosage of Aluminum Hydroxide. Which helps the body to rid itself of phosphorus. His original blood cultures, that showed positive for a blood staph infection, have been the only cultures to show positive. Which leads us to believe that it was contaminated. We have sinced discontinued the Vancomycin. Saturday he also had severe diarrhea. The purely liquid kind. Which meant he was dehydrated, pretty quickly. Diarrhea, combined with his frequent vommiting have caused us to keep a super close eye on his hydration and are compensating for any loss via IV fluids. Then……… for a short time, out of the blue, the kid is back. Happy, playful and riding his tricycle. Mind blowing.
For Tuesday’s sedation, they used Fentanyl & Ketamine. (Yes, that’s Special K) What a trip. Literally. First off, this sedation is a “disassociative anesthesia”. Which roughly means, your mind goes “somewhere else”. I was able to hold Gregory while they administered the drugs and he “fell asleep” in my arms. We then laid him in position. This drug allowed Gregory’s eyes to be wide open, the whole time. The lights were on, but nobody was home. Talk about spooky. Once they were done with the aspirate, I was able to be right there with him. Every moment. Good thing, too. Thankfully he had no respiratory issues, this time. Yet, the hallucinations were fierce. He honestly believed he was in a video game. He yelled “Stop! Stop! Stop the game!” Frequently and with tears. He would hold his hand up to his face and stare at it, while rotating it in front of his face. He really did not know where he was. My being able to hold and talk to him, I hope, kept him tethered to what was real. He recovered realtively quickly. 45 minutes, maybe an hour. It may have been emotional, but it was NOTHING compared to his reactions to Propofol. Once the effect wore off, it was as if nothing had happened. He was happy and playing.
Now we wait. While I think it’s relapse, doc doesn’t agree. He mentioned MDS. Which, quite frankly, freaks me out more than relapse. A diagnosis of MDS would be a diagnosis of “MDS, secondary to treatment”. The three big gun chemos that they used for marrow conditioning, prior to transplant, can cause MDS. Cytoxan, Busulfan & Melphalan.
*screech* Yes. I just threw on the brakes. This is the point in the conversation where people tell me to “get a grip”, “don’t worry about it, it’ll be all right”, “don’t put the cart before the horse”………… In my world, that’s not how it happens. I am not making mountains out of mole hills. This is the reality. This is what happens, more often than you really want to know. I considered sharing the number of relapses’/deaths I’ve experienced since February of last year and I just cannot put a number to it. I will say that it’s more than 10. That’s only counting the number I’ve met in real life. If I included my online community? The numbers are staggering. Statistically speaking, in the first 19 days of this year, 722 kids have been diagnosed with childhood cancer and 133 have died. These are the numbers we face. Daily, hourly, minute by minute. By dismissing my worries and fears, it conveys a disrespect for what we are going through. I understand that it is far easier for people to scamper to safety and pretend that everything is going to be OK. It’s HARD to face these demons and realities. Yet, I do not want to get hit from left field again. Doc mentioned MDS earlier and I did not give it a second thought. After a discussion with a very good friend, I decided to look it up. While reading through the description, I felt that gut wrenching, head pounding, sweat producing, lights dancing in my vision feeling. It never dawned on me that Gregory could be hit with a secondary malignancy so soon post transplant. With a little more research, I found out that YES, it happens. After about an hour, now, I feel like I can take the news and work with it. Ask my questions and understand the answers. Playing Dr Google can often be a bad thing. For me it has done everything to help me. I have learned so much. Things as simple as the correct pronounciation of words to intense descriptions of White Blood Cells. I’m far from well educated, but I have a working vocabulary that allows me not get overwhelmed by technicalities.
Now we wait, as test results slowly trickle in. Doc also mentioned that he is concerned that Gregory is no longer 100% donor. At this point I have no idea what all these possible reasons mean, in terms of treatment. I will not be asking that questions, until we have a diagnosis. A very dear friend of mine asked me what my gut feeling was. I did not have an answer. I have never been one to even be able to HEAR my gut, let alone listen to it. I did come to this conclusion, from the very beginning, I have prepared myself for two transplants. I guess you could say my gut speaks in broad brush strokes. I don’t have anything for this particular event, but I do feel two transplants. I would be more than happy to be proved wrong. Trust me. ’til later, gotta jet.