MRI DAY TOMORROW:
It's here again. Every two months Ty is scheduled for an MRI of the full brain and spine. I know it doesn't seem like two months have passed because he has had a couple of brain MRI's in between, but Ty's last bi-monthly MRI in March was pretty much the last time he was feeling good. It's when we made the huge mistake of feeding the trolls by bragging about how great he's doing. When we were singing from the rooftops about another clean scan and showing off his progress by having him walk across the playroom for his nurses.
My prayers for tomorrow are coming from the center of my bones because that's as deep as I can visualize my energy. Lou and I are filled with anxiety. I can't wait for tomorrow. I am eager to hear that there are no signs of disease in Ty's brain or spine. I want to know for sure that we should keep doing what we're doing, even if we don't get the answers we are longing for (meaning, if it's not disease and not necessarily radiation necrosis - what the heck is going on?). Neither of us expect those answers. Ty has always suffered consequences of medical anomolies that couldn't be explained with certainty, so why should this be any different? I just want to know that we are doing the right thing by forcing Ty into the oxygen chamber every morning - kicking and screaming - and then following up with aggressive PT and OT that leaves him exhausted. We are in this fight 100% and we are pushing Ty to keep at it day by day. We need this MRI to reassure us that this is the right direction for him - at least for the next six weeks before the scanxiety starts setting in again.
It feels like my shoulders are stiffly perched up above my neck as if I was just stabbed in the back. There is a steady, throbbing pain just above my right ear - probably from clenching my jaw for days on end. My clothes are uncomfortable because my skin is crawling. Instead of my usual insomnia, I wish I could crawl back into bed on this rainy day and sleep through this dreadful feeling until it's time to leave for Sloan Kettering in the morning. If given the chance, I know I would be able to do it... I can barely keep my eyes open as it is right now. Please, please, no more cancer. May it never, ever, ever, ever, ever come back. May Ty navigate his way through a miraculous recovery and be restored to his full physical health.
THREE IS FUN
On the flip side of this crazy beautiful life, I am thoroughly enjoying three years old. Gavin is just such a character and he makes me laugh every day. He is so different from Ty. Not just because Ty's three's were robbed from us due to hospitalizations, infections, chemo and radiation; but also because even when Ty had his good days, his sense of humor was always different. Ty has always been verbally funny. He likes jokes and teasing. He likes to be entertained by others. Gavin is physically funny and much more independent. He likes to tackle, make funny faces, hide in boxes. This morning I found my cell phone in his tent. He is simply unable to climb into bed with me and snuggle like Ty does, he has to go balls-out crazy under the blankets every. single. time. Which is why we may keep the big goon in his crib until he's five :)
The picture above was taken a few weeks ago when Ty was still doing okay. I see Ty in the corner of the photo sitting up straight and holding his hands over his eyes because there must be something scary on TV (and by scary, I mean the "door mouse" on Team UmiZoomi, or "La Bruja" on Dora the Explorer). Now Ty can only hide by closing his eyes. It's sad. Lou and I were with him at Blythedale the other day and he was teasing us by closing and opening his eyes. "Where's Ty?" we would pretend. He would smile big and then open his eyes so we could act surprised and say "Oh! There he is!" I know he doesn't really think he is disappearing and reappearing, but goofing around like that are the things that makes Ty laugh.
Ty calls his little brother a "lunatic" and it makes them both laugh. I love how they love each other. Ty woke up feeling very sad today. He was crying and crying. He was in pain. Gavin crept over to see Ty and he was caressing his legs and feet gently. He was saying "Oh, Ty." It was beautiful and gut-wrenching. My Gavin may be a crazy little man, but he has a heart of gold.
Ty has been very, very emotional. And, he has been in a lot of pain. He is very physically uncomfortable because of the muscle spasms and tightness in his neck and his limbs. He flinches and cries out every time I move him in the slightest. After several days of this, I finally broke down yesterday. Here's why.
We took a trip to the candy store for the first time in a while. Several weeks ago, one of Ty's amazing teachers made him a book filled with photos from "CandyWorld" at the Danbury mall. Yesterday I decided to surpise Ty after therapy with his first trip to the real Candy World. It was exhausting but it made him very, very happy. We spent almost 1/2 hour in that tiny store just marveling over the candy :) At the mall I had to use the fold-up wheelchair for the first time, but it doesn't provide enough head support so I had to hold his head with one hand while steering with the other hand. It was my first time putting Ty in a wheelchair outside of the hospital and I could barely hold back the tears from the constant stares. I don't think I'll ever get used to that. I felt so protective, like a lioness, and I just wanted to yell at everyone.
When we got back to the car I was simply spent. Lifting Ty from the chair back into his carseat - and I was sooo careful - resulted in him screaming in my ear for the hundreth time that day. In all honesty, I wanted to yell at him. I wanted to tell him to "shut up!" I didn't, but just feeling that way made me feel so tremendously guilty and weak. I got in the front seat and just started crying even louder than him. I started yelling at him how sorry I am that I can't fix it. I told him that I wish I could be a better mommy, that I wish I could fix it so it didn't hurt anymore, that I wish I could fix everything. I was tired and emotional. I am embarassed of my behavior but I'm only human.
I can only compare it to when my boys were babies. When I was a sleep deprived mom to newborns and at times I just wanted to yell at them to stop crying. I think most mom's out there can relate to these feelings. These are not proud moments, but it is only natural to be vulnerable sometimes. Parenting is exhausting.
SICK HOAX TAKING ADVANTAGE OF CANCER KIDS
Some people are just sick in the head. That's a phrase I can hear my Dad saying, "He's sick in the head, I tell ya, sick in the head." I was recently notified about a facebook page that was created where a grandmother and mother were asking for money to help them care for their three-year old girl who was recently diagnosed with cancer. I was told that it was suspected to be a hoax and asked to say something about it on Ty's pages to help speak out against them. At the time, I didn't have the energy to look into it. I didn't want to be an advocate against scumbags that day.
Then it happened again yesterday. I saw messages all over facebook about a cancer mom who had just been killed in a car accident. Warrior Eli's family had maintained a caringbridge for over a year. They had posted photos of a bald-headed "Eli" and his siblings. They set up a donation page that was supposed to be redirected to Alex's Lemonade Stand - a highly reputable foundation that funds children's cancer research. Well, it was all a hoax. How disgusting. For the first time since Ty got sick, I became disgusted with how cruel people can be. I'm happy to say that my entire cancer experience has been otherwise filled with love and prayers from friends, family and strangers around the world. This story is discouraging, but won't change how grateful I am for the real community who has come together for these kids.