I wish I could come up with a better metaphor than a roller-coaster, but am too tired for that and anyway it’s an apt description of today. There were ups, there were downs.
Began the morning with our daily platelet transfusion. Despite having a great WBC count, Gavin still can’t hold onto his platelets. Slightly worrying, but perhaps tomorrow a shift will happen. We knew that we were heading down for the GFR for 9:30 and so expected IV team to arrive an hour or so before. Naturally, they arrived at the same time as Gavin’s French toast, so we sent them away and tried to get him to eat some after a liberal dousing in maple syrup. He ate almost a half of a piece.
IV team returned a little while later, and I tried to prepare Bean for what was to come. He knew just by looking at them who they were and burst into tragic tears. I kept saying, tell me when you’re ready, darling and he kept saying, not yet. It was a fairly traumatic IV insertion, she had to take two runs at it and Gavin bawled the entire time. Afterwards, Craig commented on the fact that he thought it was the worst one yet, and I then realized that he only thought that because he wasn’t there for the very worst one which took more than three tries and left both Gavin and I shaking and weepy. At least I managed to hold it together. (This morning)
Once the IV was in Gavin cheered up right away and played happily until Bubby joined us and transport took us down. Bean sat on Bubby’s lap in the wheelchair and left the floor for the first time in more than two weeks. The GFR was a non-event, Gavin watched Backyardigans quietly and we went back upstairs.
I had a terrible realization this morning too. Gavin kept asking for Monkey, and I couldn’t for the life of me figure out where he was. I became completely distracted, and tore the room apart while trying to pretend I wasn’t looking for something. I finally had to admit that Monkey was gone. The only possibility being that he got sent out in the dirty linens. Our chances of getting him back are slim but I spoke to the Linen Lady somewhere in the bowels of the hospital and she was hopeful that he would be returned from the laundry service intact. HOWEVER, what do we do in the meantime? I told Gavin that Monkey is in the wash for the time being, an excuse he accepts somewhat. Craig sprang into action and ordered a new Monkey online which we should have soon. We’ll have to wash the new one a million times to make him look a bit more bedraggled, but hopefully Bean will not suspect any trickery.
I had an embarrassing mishap in our anteroom in which I jammed my shoulder into a dispenser of hand sanitizer very painfully, tripped, fell and spilled my coffee too. I was in mortified tears after this and the nurses were all flocking to have me examined. I realized that after the stress of IV insertion and loss of Monkey this was a straw/camel’s back situation. Eventually, I sorted myself out and cuddled up with Gav to try to get him to have a nap. He wasn’t really sleeping so we were lying in bed telling stories when our nurse asked if we could do an ECHO.
The tech had brought the giant machine with her and couldn’t get it in the room very well, but after some maneuvering managed to do it. Gav was completely chilled about the whole thing, as if you have ultrasounds of your chest every day. Oh, heart. Echo, he said when the machine fired up. I guess it was lulling somehow because he eventually fell asleep. The tech left and he was clear to sleep for as long as he liked.
I decided at that point that I had to do something about my other arm, the one that didn’t get in the fight with the dispenser and booked an impromptu appointment for a massage at Sutherland-Chan down the road. I felt relaxed for half an hour.
Upon returning to hospital I was chatting quietly with Bubby in our room when a couple of members of the neuro-onc team showed up to “visit.” Usually ends with some terrible bomb being dropped, leaving me full of despair. Today was not awful, I am just left with a lot of questions that can’t be answered. Our future is so un-knowable. Gavin’s disease is terribly unpredictable. All of my questions about what the next phase of treatment will be were met with noncommittal answers, as we won’t, and can’t, know anything until after the results of the next MRI.
The next MRI and lumbar puncture will be towards the end of December, after he finishes this final round of devastating chemo. We are hoping for the best Christmas present ever. We are hoping to begin 2011 with a clean slate and the prospect of having our little boy home with us, long-term, to truly begin his recovery. I’m projecting to all the Christmases ahead of us, that I see in the many long years of Gavin’s life. We are mere weeks away from the end of this.
I want to share a story I love and which many of you may be familiar with, because it shows how resilient the human brain can be, and how a mother’s love is powerful enough to pull her child out of the darkness of serious illness and rebuild what once was. Dr. Jill Bolte Taylor was 37 when she suffered a massive stroke. (See this. ) She was also a neuroanatomist and brain researcher who understood what was happening to her with acute insight. She underwent surgery to have a huge blood clot removed from her brain. She survived surgery but she lost the ability to walk, talk, read and write. It took her 8 long years to recover what she had lost, but with the tenacity and help of her mother she learned all of those things again and made a complete recovery. In the dark day before Gavin went into surgery our nurse was an incredible woman named Darcy, and I had long talks with her about my fears, my hopes. One comment she made was that, in some ways, it was fortunate that Gavin was so young, because I would be teaching him the things that he is meant to be learning at this age anyway, colours, shapes, alphabet, numbers. And Gavin is learning those things so well! The prospect of having to start from the beginning would be so daunting, but the point is that it can be done.
I believe that Gavin can and will make a complete recovery from his tumour, surgery and treatment. Over the next months and years I will do everything, everything in my power to make this happen.
5 responses to “Action-Packed”
You are simply and completely incredible, Erica. We love you three. We have a purple candle on our kitchen table that Gracie calls the “Make wish for Gavin candle”. We light it every day ( most days several times at Gracie’s request) and make a wish for your strong little man. When I ask Gracie what wish we are making for Gavin that day she says “make Gavin happy” and “feel better”. You and Gavin are with us always. Sending you all of our wishes.
Kisses for Gavin… and monkey
I too believe that Gavin can and will make a complete recovery from his tumour and treatment. Your life’s work is unfolding for you Erica and it couldn’t be more important or worthwhile. Much, much love.
Erica, you and Craig and Gavin are truly inspirational. We are always thinking of Gavin.
Last night, woke up about 3 and couldn’t sleep…starting thinking about you guys, especially Gavin. I hadn’t read this blog yet, but I knew I had to do something. I lay there and saw this gigantic heavenly funnel of light and energy pouring into the top of Gavin’s head…sort of starlight and sunlight all together.
I believe with all my heart that he will be okay. Now, back to earth, where in the heck is monkey? 🙂
I’m very grateful that you write this blog Erica as I read it all the time and it helps me keep up with all that is happening. Although we are so far away, you are always in our thoughts. We light a candle for Gavin each Sunday at Mass and say a special prayer for him.
The brain is an amazing and complex organ and I believe that full recovery is possible for Gavin. I recently read a really interesting book which talks about neuroplasticity and the brain’s ability to adapt itself. http://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/067003830X