Ya know, the easiest way to navigate this Childhood Cancer road would be to stick my head in the sand, plug my ears and sing *lalalalalalalalala*. It would. I’m not wired that way, though. Today is our offical nine month diagnosiversery. Gregory was admitted on February 23rd and his bone marrow aspirate was two days later, on the 25th. Nine months is just a drop in the bucket. I’ve received bad news a lot these last few weeks. For a while I was thinking that it’s just a bad time, right now. I’m beginning to change that line of thinking. I keep getting bad news. Which leads to a shift in my thought process. Trying to accept, live with and be at peace with the idea that frequent bad news is part of all this. How does one do THAT? I don’t have an answer and don’t expect one to be forthcoming, anytime soon. I could just check-out of this constantly growing community and wash my hands of it. Can’t do it. It’s not an option, for me. There is a driving part of me that requires community. A coming together of shared experiences, mutual understanding and support. While I can’t say to fellow cancer families “I understand what you are going through.” I can say “I get it.”. Every experience is unique, as unique as every child. There is incredible comfort and security in being able to look another cancer parent in the eye and recognize the emotions that flit across the surface. To be able to have a casual conversation about our experiences and not see the other person recoil in horror. ‘Cause it is horrifying and before diagnosis, I would have recoiled like crazy. To know that when I open my mouth the other person is not going to nervously redirect the conversation to something safer to discuss. It’s human nature to do this. I get it. Sometimes we all need SOMEONE to be present, listen and witness what we have to share. THAT is why I stick around. Not because I enjoy getting sucker punched with bad news, but because we need each other.
While Gregory and I were in Seattle we met this incredible kid. I say kid, but he was an adult. 18 or 19, I think. The details get kinda lost, we met so many families. Paul had survived Lymphoma, bone marrow transplant (I think. I’m pretty sure, though.) He received radiation as part of his treatment. He develped Leukemia, secondary to radiation. Not that there is a good leukemia, but he had the bad kind and needed another bone marrow transplant. When we met he had already had his second bone marrow tranplant and was struggling with GVH and general “sickness” issues. They had a really hard time getting his blood pressure under control and the medications he was on caused some gnarly insomnia. He would roam the halls, late at night. He had this really great t-shirt that said “Fuck Cancer”. My sentiments exactly. We formed a friendship. It’s gotta be rough to be an adult, yet be in limbo. He was treated at Seattle Children’s with all the kids. He left Seattle not long before we did and went back HomeHome. Just this morning I received an email, letting me know that he had died Saturday night. The details are sketchy, I haven’t had a chance to talk with his cousin, yet. It looks like he relapsed and was sick, too. Fluid in the lungs and brain damage from infections. ………….. I don’t know what to say, next. There really is nothing that helps. My knee jerk reaction is to jump on my soapbox and BEG everyone to get active and seek funding for Pediatric Cancer research. One of these days I will put together a page on “How you can help.” Not now, though.
If you haven’t heard already, we had the longest day, yet, at clinic on Monday. We arrived at our normal 8:00 time and proceeded to get ready for blood draw and IViG infusion. Well……. we have been having troubles getting his central line to draw. It flushes with ease, though. Monday they could not draw any blood out of it, so we injected some TPA, thinking it was a clot somewhere and waited for it to work. An hour later, no luck. Doc was consulted and it was decided that we needed a line study to determine what was going on. I have no idea what was going on in the hospital, on Monday. Obviously Gregory’s need for a line study was a pretty low priority. We waited. And waited. And waited. Then we waited some more. And waited. During this time we discussed his gut issues and decided to try a different “food” for his feeding tube. We are now using Elecare, which is totally broken down. Hopefully Gregory will absorb this food much easier, give his belly a chance to rest and recover. He is being slowly introduced to this food. 20ml/hr for 10 hours, 40ml/hr for 10 hours. 4 hour break. 40ml/hr 10hrs, 50ml/hr 10 hrs. 4 hr break. 50ml/hr for 10hrs, 65mls/hr for 10hrs. 4 hr break. 65ml/hr for 20 hrs. 4 hr break. (BTW~ There’s 30ml in an ounce.) I’ve already seen a significant change in his AM stool. With less stooling, too. Then again, he is receiving a significantly smaller volume. The true test will come as the volume increases. If this doesn’t work, the next step is TPA, which is infused via his IV. Bypasses his gut altogether. We also discussed his incremental weight gain. He’s up another .2kilograms. 15.4 now. His calorie intake has been consistent. As we were discussing this, Gregory was curled up, laying down in my lap. Doc asked me if this was common behavior. It has been. He hasn’t been off the bed to often in the last few weeks. Doc then attributed his weight gain to being sedintary. Ah Ha! Makes complete sense. Thank you! Finally around 2:30ish it was time for his line study. They took us down to radiation and Gregory got to lie on this long skinny table that had an x-ray camera that could pass over his body, while taking “movie” x-rays. There was monitors at the bedside that he could watch the pictures, while they were doing it. They injected dye into both lumens of his central line and watched what it did. It was really cool. Meanwhile, he is totally chatting up the techs and they are getting a much needed kick out of it. They had even brought down an Anesthesia nurse, just in case he needed something. Nope. Didn’t need it. She discovered this herself and looked and me and said, “Well, the only thing he could have had was Versed, anyway.” I looked at her and said “Nope. He can’t have Versed.” Gregory has a paradoxical reaction to Versed. We didn’t need her, but it was kinda nice to see a familiar face. She has worked with us, before, during his other surgical procedures. (side note: I really wish they would look at his chart BEFORE seeing the patients. Nothing like suggesting a drug that your child cannot have to instill a sense of security. NOT! Yes, yes, I know. They would have consulted the chart before administering anything, but…….) The test showed that he DID NOT have any kind of obstruction. What it did show was that when you drew back on the line, surrounding tissue was being pulled up into the entrance, thus not allowing any blood to flow through it. This could be due to several reasons, the line could have shifted or with his additional weight gain, it is causing the area to be compressed. The only solution to this is to place another line. Which means surgery. Which means risk of infection. Gregory is at a point where he does not NEED a central line for blood draws. Yes, he does receive them weekly. We CAN still use it for infusions. This is good. So. He now has to have arm pokes. Ugh! After all this, we went back up to the clinic and waited for IV therapy. They showed up and had to poke him in both arms to get the amount of blood we needed. We are still doing weekly blood cultures, on top of all his other tests and it requires a substantial amount of blood. It was traumatic and I’m sure our weekly visits are going to be filled with anxiety, now. Argh! Something I was desperately hoping to avoid. Which means we certainly won’t get an accurate blood pressure, anymore. Monday’s was up AGAIN. 134/75. But came down, in the evening. Gregory’s threshold for IViG infusion is 400. Doc has requested that we had IGg level results before transfusion. If it was below 450, he would be infused. Which meant we had to wait some more for results. Results were 441. Which meant he needed IViG. Duh! At this point the clinic was closed and we were shuffled over to the inpatient unit for his transfusion. We were settled into our original room, 308, the room we had back at diagnosis. After vitals, Tylenol and Benedryl, it was finally time to start the infusion. It was 6:30pm. The infusion went pretty fast, he slept through most of it and we were cut loose at 9:30. Then the drive back to our Water Retreat and we were settled by 10:30. All told it was a 15.5 hour day…….
I feel like we are making small progress with Gregory’s gut. The next several days will be a challenge, though. Daddy and the kids are coming out on Thursday and we will be having a Prime Rib Thanksgiving. We are not a turkey loving family, but man do we love Prime Rib. With Greogory’s gut he is not able to eat a lot of table food. I have even cut out dairy. You don’t realize how much you eat had dairy, until you can’t eat it. Today mom is coming out and I will have a chance to run to the store and pick up some Lactase so he can at least have some of what he loves. (Chocolate MIlk & Cereal) The family will be coming out again, on Sunday. Curtis’ birthday is next Tuesday and we will be observing it then. It’s just too hard to try to get together during the work/school week. It’s going to be a busy stressful few days for Gregory. I just hope he weather’s it well. As always, time will tell.
As you are all gathering with your families this Thursday (at lest those of you that are in the US or abroad and observe Thanksgiving. AKA: Travis) rejoice in your gatherings and be glad. Make decisions that are good for you and your families, show your love to one another and remember those that are not able to be present. Share memories and make new ones. Remember too, that you don’t need Thanksgiving to do this. Everyday is an opportunity. My greatest gift this year is Gregory’s life. The medical advances that allows him to still posess life. Not just a mere being alive, either. Happy Thanksgiving to every last one of you. ’til later. Gotta jet.