If I could write half as well as you all think I can, there would still be a gap in my ability to express what these last two weeks have been like.I’ve had all three kids with me. We’ve spent a few nights at HomeHome with Daddy. We have been learning to live together, again, and I’ve been catching up on the changes Curtis and AnnMarie have experienced over the last 15 months. Being in my home as been strange. The normal routine of dishes, laundry and meals feels decadent. My kitchen, my kitchen tools, my washer & dryer, my kids’ rooms……. Familiar, yet new. Curtis and I gutted his bedroom last weekend. It was an amazing thing to do together. Reminders of his quirks. He hates the sound of Velcro. I had forgotten and went to remove something that had Velcro. He stopped in his tracks, threw his hands over his ears and so incredibly calmly said: “Mommy, please don’t do that. Velcro really hurts my ears.” The fact that he was able to calmly and rationally express this is mind blowing. Once upon a time, something like this was accompanied by an outburst, a meltdown and a long time to recover. Not only is he learning what sets him off, he’s learning how to express what he needs and deal with having to feel it. On our way down to his room, he also firmly told me we could ONLY use “natural light”. Which tells me that the artificial light hurts his eyes. Curtis and I are coming to a place where he can tell me what he needs and I can accept it and see that his needs are met. It’s quite amazing to be here. I have spent so many years worrying over Curtis. He and I have had some difficult years. Times when I’ve wondered if we would ever connect, again. Times where I’ve wondered what his future holds for him. Wondered if he would ever be able to live on his own, in society. He has come a long way. Larry and I try to keep an open dialogue with him. Reminding him about things, opening up different lines of communication. Reminding him that above all else, we love him and he is free to feel and express who he is. I know we have some dicey years ahead of us, but I’m confident in the foundation that he and I are re-laying. Can’t tell you how good it feels. AnnMarie is my hardest. I’m beginning to think it’s more her age, than who she is. It also has much to do with my own baggage. She is trying to find her place in the world and being pulled in many directions. She wants to be part of everything. I can feel her insecurity and I am at a loss as to how to help her. The only thing I can do is love her and make sure she has a safe place to fall. I’ve also come to the realization that parenting elementary age kids is so challenging. Seeing a glimpse of what Curtis is going through gives me hope. I think I’m really going to dig parenting teenagers. There have been so many times that I have found myself in tears, lately. Over the simplest of things. Not because these are events that I didn’t think would happen, but because the simplicity of them is so beautiful. We have had a far easier time of it than I expected. The fact that we are not HomeHome, yet has been good, too. It has given the four of us a chance to work out the kinks at a place that Curtis and AnnMarie consider a fun getaway. We are taking this step-by-step and all is good in our world. Don’t get me wrong, they are still siblings, I’m still The Mom. We have our run-ins and frustrations, fighting and yelling. I think we just get over it quicker, now. Gregory has been doing great. He had labs and IVIgG, yesterday. His port drew perfectly. He is starting to go longer between IVIgG infusions. It used to be every four weeks, May 17 was his last IVIgG infusions. I have a theory that he’s gone longer because he’s not using it. It’s no longer cold and flu season so he’s able to hang onto it longer. The true test will be how long he can go this fall/winter/spring. We have been struggling with his Sirolimus levels for several weeks, now. At least since his admit in May. It goes down, we slowly increase his dose, then the levels begin to sky rocket so we decrease his dosage. I have a feeling we will be increasing it this week. He’s been throwing some white cells that are usually not there when his levels are good. Here’s a question for anyone who might understand this…… Doc mentioned at his last appointment that he had some “GVH Cells” in his counts. Eosinophills to be exact. I’ve never heard these cells referred to as “GVH Cells” and was wondering if anyone out there had. I do know he has been experiencing a small flare, lately. Which would correspond with the presence of these cells. We finally received our packet of paperwork from his follow-up in Seattle. His prednisone taper was not included, I call and had one mailed. He is due to taper the second week of August. Just a tiny taper. He is still at 1mg/Kg every other day. Doc stated that we would not even consider tapering his pred until he has been GVH stable for some time. Which is really good news. Gregory begins his re-immunization on the 10th of August and I would prefer that he not be in the middle of a taper. If he experiences side effects from the vaccinations, I’d like to have a clear picture that they are vaccination side effects and not a GVH flare from tapering his prednisone. We are still going in for weekly labs and every-other week exams. If his Sirolimus would stabilize we would be able to start spreading these visits out, but…….. *shrug* We started the “health catch-up” craziness with Curtis and AnnMarie. They had dental appointments this week and it’s all good news. AnnMarie has had a blackish/grayish spot on one of her front teeth, near the gum. It looked really nasty and I was fearing the worst. As it turned out, it was lots of pieces of HAIR!!! The hygienist that cleaned her teeth had to get tweezers and carefully pull each hair out. AnnMarie has a habit of chewing on her hair. Can’t tell you the relief I felt that it was JUST HAIR! She also only has two small cavities. No big deal! Curtis only has one tiny cavity!!! Curtis’ “bigger” issue is the size of his teeth in relation to the size of his mouth. He has giant, strong horse teeth. We knew he would need braces and before Gregory was diagnosed it was a manageable thing. He was supposed to get them last spring and there was not way this was going to happen. Not to mention the cost. Curtis’ upper eye teeth are trying to come through his gum line. there is just not enough room for them to descend into his gum line. Several years ago, he had teeth that actually came in through the roof of his mouth, because there was no room in front. We have been referred to a dentist that takes Curtis’ medical coverage for Orthodontics. It’s case by case and based on need. Curtis needs it, without a doubt. This is something else that I am incredibly grateful for. They also have eye exams, soon. Curtis needs new glasses and I know AnnMarie will now need a pair. Soon all five of us will be wearing spectacles. This is also the time of year when we (the childhood cancer community) start to gear up for September. September is Childhood Cancer Awareness Month. I don’t have my fact sheets in front of me but here is one fact that sticks with me and is hard to swallow….. For every $100.00 dollars donated to The American Cancer Society, only $00.70 goes to Childhood Cancer Research. Yes, you read that correctly. Seventy cents of every one hundred dollars. If you want to make an impact on research for childhood cancer and simply want to donate funds, I recommend donating to St Baldricks. We currently have an amazing group of women, 46 Mommas. These women are Shaving For The Brave. St Baldricks events, across the country, have raised over $20 million, this year so far. St Baldricks is the largest contributor for childhood cancer research, second only to the US Government. If you can, the 46 Mommas are shaving in September and would like your donations. Why 46? On average, 46 kids are diagnosed with Childhood Cancer, every day. Why donate?
- Anna was Cancer Free when she died. She died from Chemo Toxicity
- Makiah had a liver transplant, her cancer invaded her new liver and is being sent home on Hospice.
- Cameron has had THREE Stem Cell Transplants for JMML and is now in the grips of SEVERE Acute Graft Versus Host
- Rhema has relapsed with DSRCT at the age of 13. Just a short time after being found No Evidence of Disease.
- Anna & Maddie are siblings. BOTH diagnosed with ALL.
- Tyler has relapsed Stage 4 Neuroblastoma.
This is just a TINY list of why. Death, relapse, late effects, GVHD. Someone asked me why I focus on the ones who are struggling and don’t focus on the ones who have a strong life and survival. It’s a valid question, but one that isn’t answered with a very bitter taste in my mouth. The side effects of today’s childhood cancer treatments are horrific. Yes, you could say that these kids (the ones that survive) have strong lives. Yet, no. Not really. I’m not a scientist. I’m just a momcologist who is wishing and dreaming of better treatments, survival rates and successful, healthy lives for the children of the generations to come. Cancer will not go away on it’s own. We need to advocate, raise awareness, raise funds and show the movers and shakers that this has got to stop. We need scientist who are willing and funded to think outside of the box. Scientists who doggedly pursue research in immunology. Scientists who are breaking the DNA code to obtain better matched Stem Cell donors to recipients. Those of us who have lived this need help. Will you be the one?*stepping off my Soapbox. Kinda* Life is good, life is filled with love, life is bittersweet, life keeps plugging along. We are facing it head on and embracing every moment. ’til later. Gotta jet.