Wednesday, January 4, 2012

The tortoise wins the race

Baby steps.  That's all I ask for, and today I think Ty took several.  His left arm is visibly stronger (he can lift it about an inch or two) and his leg is not so limp when he tries to scoot across the floor.  There is some movement there, and better balance.  I am thrilled. He had a lot more energy today, too.  It probably helped that my mom and dad were here to visit, because he was so excited and wanted to show them everything he got for Christmas.  They played non-stop all day. 

Every physical challenge that Ty is forced to face, also rewards us with the kind of immense joy and pride that you feel only when you hear your child speak his first word or take his first steps.  We get to watch Ty regain physical abilities that he has lost along this journey, and with each baby step Lou and I are overcome with peace, love and gratitude.  There were times when he couldn't eat, speak, roll over or hold his head up.  We are so lucky to have watched him slowly regain these abilities - beyond blessed - and we know that slow and steady wins the race so we are trying to be patient.   

I believe he will continue to progress each day forward and I was relieved when I noticed a small sign of such improvement today. The rest of the pediatric team at MSKCC believes so, too :)  The discussion at tumor board today, at least what was relayed to me, sounded very promising.  The entire team of specialists agreed that there was no evidence of disease on his scan, that it was an unfortunate isolated vascular incident, and they suggested a few tweaks to his therapy in order to help prevent future occurrences.  I know I already received this information from the official MRI report, but it's nice to have such validation from a wide range of top-notch specialists. 

Tumor board is a weekly strategy meeting attended by a large variety of pediatric cancer specialists who meet to discuss patients and provide second and third opinions with regard to treatment options.  This was the first week in a very long time where Ty was on the agenda.  There was a time where his case was discussed every week for several months straight.  As you all know, he likes to keep them guessing and we used to joke about how the board members probably roll their eyes when his name comes up every week.  I wonder how many eyebrows were raised THIS week, when they saw the image of Ty's third consecutive clean MRI and heard how well he was doing despite his recent setback.  I like to imagine several of the doctors gasping - maybe even falling off their chairs. Especially some of those who were involved in Ty's care when he was inpatient (but otherwise didn't care for him regularly) and didn't show any faith that he would ever come this far.  I have to admit... little victories like these feel damn good.  They wouldn't even recognize him today.

So, we will be holding off on one of his chemo drugs for about a month.  Avastin is given to Ty every two weeks because it is a drug that seeks out and destroys abnormal vascular growth.  This means, if a tumor were forming and trying to create a blood source to allow further development, the Avastin would prevent these blood sources from forming and therefore prevent new tumor growth.  However, when the brain heals from radiation, the body creates new capillaries in the brain tissue in order to aid the healing process.  The Avastin might be attacking these new vascular formations as well, and therefore causing minor intracranial bleeds.  So we are taking a break and adjusting his dosing to make sure he is safe from any future occurrence.  I still do, however, need to take him to the hospital tomorrow for a platelet transfusion (he is running low from all the other chemo in his system) and we need to pick up a five-day course of Dexamethazone (steroids).  I'm a little scared of the steroid monster that Ty will become, but it's only for a very short time and maybe he will begin eating again as a result (at least the steroids tend to give him a raging appetite).  We are trying the Dexa to see if it can reduce some of the swelling around Ty's brain stem and speed up the healing process before he loses more muscle mass and coordination skills.     

I am actually very tired tonight and I think I'm going to fall asleep easily.  I don't know why I would jinx myself like that, but I already did it so now I'm just keeping my fingers crossed.  Goodnight everyone.  Thank you so much for keeping Ty in your prayers.


  1. Omg he looks so much healthier. What a great photo. That's so wonderful to hear about his MRI results. Let's all pray that this continues for him. Time to get some rest for mom and dad I think. But this is fantastic news. I'm sure those doctors were certainly more than surprised by these results. But also, hats off to the doctors for there enormous efforts!

  2. Beautiful, beautiful, beautiful, beautiful Ty...( Put in John Lennon's voice...........)

  3. Yay for Ty!!! Minor setbacks beware! More and more progress is in store.

    I feel very confident that all of the right decisions are being made in regards to Ty's medications. I completely trust your intuition along with the doctors' guidance. It's gonna be good.

    One day Ty will walk into Sloan Kettering on his own two feet and the tumor board WILL fall off their chairs. I love it!