These women. These women I love. Fiercely. I have never laid hands on any of these women. Well, about 95% of them. They are my sisters. I only need
utter type a few words and they understand EXACTLY what I’m trying to convey. They are passionate, fierce, hilarious. They fight, rally, grieve. They are my fellow Momcologists. We have all have a sick and twisted sense of humor. It is a must have in this world. Never, would we have crossed paths, had it not been for Childhood Cancer. While NOTHING is worth what Gregory and our family have been/are going through, these women make it a safe place to fall. A safe place to show vulnerability. A safe place to share fears and realities. There are moments when my heart is overflowing with the emotions I feel for these women. Every. Last. One. Of. Them. I dream of a time in my life where I can travel, in a luxurious RV and visit these women. See them in the flesh, *fiercely squeeze* them, sit silently in their presence while holding their hand. Knowing we don’t need to speak a word. Knowing that THEY know my heart.
I love you, ladies. So much, it often brings me to tears. Thank you for being.
Things have been crazy around here. Day in and day out. Anxiously waiting for cold/flu season to be DONE! Anxiously waiting to let my guard down. Then……..
We have a goal to get Gregory off his Prednisone by our annual follow-up in June. He is currently at 5mg every other day. In two weeks we go to 4mg. Decreasing by 1mg every two weeks. The thought is that IF he should show any treatable GVH symptoms, it will coincide with his annual follow-up and SCCA will be there to advise us on how to proceed. He has done so well since we upped his Prednisone and switched from Tacrolimus to Sirolimus. I must admit to being nervous about tapering his Sirolimus. I’ve believe, for quite some time now, that the Sirolimus is what has done the trick for Gregory. Only time will tell and we will cross that bridge, when we get there.
He spent three weeks in March spiking intermittent fevers. Daily. At least twice a day. He had little to no other symptoms. Three ER visits and a two night admit. All testing came back negative. My gut tells me it was GVH. His doc also mentioned that it could have been related to his adrenal insufficiency. What ever the cause, it does not alleviate the stress and worry that comes with the symptoms. My mind went crazy trying to figure out what was going on. Two of my bigger fears kept racing through my mind. Epstein Bar Virus (Mono) and Cytomegalovirus (CMV). He is, and will be, extremely susceptible to these nasty illnesses. The best plan of action for Gregory, is to catch them early and treat them aggressively, when they can be treated. I’ve heard about Chicken Pox running around town. Another deadly virus for Gregory. Which has resulted in keeping him and I extremely isolated. Yes, you could argue that it is better for him to be as “normal” as can be. Yet, here’s my argument: He is still pretty young. I think it is closer to “normal” to be isolated at home, than exposed to whoknowswhat and wind up being admitted for days on end. I also DO NOT want to overly stress his body. We have been decreasing his Prednisone and I want his body to accept these changes in the best possible circumstances. We have the luxury of being able to make these decisions. In the big picture, Gregory has done amazingly well. He’s managed to escape some pretty nasty illnesses that are common in post BMT patients. No big respiratory illnesses and not even a whiff of pneumonia. THAT is my take home. THAT is my “proof” to keep doing what we are doing.
We are getting ready to enter the crazy time of the school year. Once Spring Break is over the balance of the school year flies by in a flurry of activity. Before you know it, we will be slathering on the sunscreen and sipping beverages, water side. CANNOT WAIT!
Gregory returns for his SECOND annual post-BMT follow-up on June 20. We meet with the endocrinologist in July to seriously discuss the addition of Growth Hormone. Dreading THAT appointment. We return to SCCA this year, knowing that Gregory will not have a bone marrow aspirate. While I’m thrilled that he won’t need to add another scar to his backside, the security of KNOWING the condition of his marrow will not be there. He will only have an aspirate if his blood work indicates something wonky is going on. *sigh* Big leap of faith.
Gregory’s two lower front teeth are incredibly loose. The new adult teeth are slowly protruding behind them. It takes GREAT restraint to not reach in there and yank those teeth out. He is nervous to lose them and I cannot wait to see a toothless grin. It is evidence that something NORMAL is going on in his body. We have no clue what those adult teeth will look like. Yet, they are making their debut ON TIME! Gregory will be six at the end of June.
Oh yeah. GREGORY IS DAY TIME POTTY TRAINED! 100% He was reluctant to begin with. After all, who wants to be bothered with having to STOP what you are doing and use a toilet, when we have a very serviceable alternative called a diaper? He got over that in a couple days and has been rock solid. Even at his first day of school with skivies. I’m just crossing my fingers that a decrease in Prednisone and the eventual Sirolimus taper, that he won’t experience copious amounts of loose stool. Please, please, please.
Still having heartbreaking moments. Grieving with families through death, relapse, “no other treatment options”, severe illnesses post BMT. If you knew how many childhood cancers result in “no other treatment options”………? You’d be shaving with me, too. If you really realized the depth of what we face after treatment…….? You’d be shaving with me, too.
Will you take my word for it?
Please! Donate on my noggin. Tomorrow’s future needs us.
*Won’t you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research.
Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
Holding you all close, with a heart bursting with love for my sisters,