Wednesday, October 17, 2012
Alison is an over-achiever. At 5 weeks old...
Way to go baby girl! Congrats on your first blow out.
This has been the toughest two weeks of the last 4 1/2 months. My little Ari has been pretty miserable (and hungry and tired and cranky and constipated). We even ended up at the ER on one of his weekend days off. But, I'm happy to report that the funny, spunky, wild, and crazy almost 2 year old I know came back today. He was playing and running and laughing and even thinking of stalling techniques before his nap (unlike the last few days when all he wanted to do was sleep!).
2 more days to go and then he's off for a bit before the "normal" routine of the next year begins.
I try not to document the days I'd rather forget, but this was too cute to ignore. Here's Ari, while on steroids, with an insatiable appetite, fast asleep... he's sleep
Friday, October 12, 2012
I'm going to let you in on a little secret. Now is the time to buy stock in Hebrew National. There is currently high demand for the high sodium meaty goodness of the all beef hot dogs. With Ari on steroids, eating like a sumo wrestler with a major craving for franks, I anticipate the hot dog market (okay, maybe just my local market) to see some major action this week.
You think I'm joking? The 29-pounder ate 7 hot dogs yesterday...the full fat ones! So we bought as many packages as our refrigerator can hold. And we've already had to restock!
I don't think it's right to make fun of my son, especially this week (see below), but there's just one more thing I have to tell you about his hot dog addiction. He calls them...ready for this...hot cocks. I'm stumped because he can easily and clearly pronounce "hot" and "dog" but when he puts the two words together, and requests his new favorite food, he makes heads turn. He shouted this repeatedly at the apple orchard, at the hospital, and yesterday on a walk in the neighborhood.
Wait a sec, he's is going through radiation this week. It makes his cheeks red and head warm. Maybe he's not hungry? He could just be telling us how he feels...
Q: What do you call a hot dog with nothing inside it?
A: A hollow weenie!
The good news - Ari is still in remission. Results from this week's lumbar puncture and bone marrow biopsy showed no cancer cells in his blood, his spinal fluid, or his bone marrow. He continues to be disease free. This is, of course, the best and most important thing I can share. The doctors said they will not do another bone marrow biopsy again!
The icky news - Because leukemia cells are sticky little suckers who like to hide in the brain and spinal fluid, he is currently going through a not-so-pleasant phase of treatment. Without going into too many details, this phase combines daily radiation, twice-weekly lumbar punctures with intrathecal chemo, steroids, and 3 other kinds of chemo. Holy
chemo cow. He is a cranky, nauseous, tired mess. And I don't blame him. We are one week down with one week to go, and then, we finally enter the phase of treatment which will take us through 2013 with waaay fewer trips to the clinic and much less medication running through his little body.
Since he has the weekend off, we will attempt to have some fun. But we'll bring hot dogs
and ativan and a puke bag everywhere we go.
Some recent pics...
Wednesday, October 10, 2012
Finding time to update the blog has proved (obviously) unsuccessful. Between caring for baby Alison and big brother Ari, trying to wash and fold a billion loads of laundry, and cook a dinner every now and then, there's no extra time for
showers or errands or blogging. The nursery is still empty. The thank you notes are still in their unopened package. And, well, I smell.
But I've wanted to update you on Team Ari. And on Ari. But the thing most on my mind right now is Tucker.
Those of you who visited us in the hospital remember him. His room was next to the play room and he had a big sign on his door that read "High School Senior Zone." I first met Tucker a few days after we were admitted to the hospital. Ari was playing with trains and Tucker was hanging out in the "teen room" across the hall. Someone asked him if he had a license and he answered "I was in driver's ed...before this whole cancer thing." I told him driving was over-rated but deep down, I remembered what a huge milestone it was for me to get a license, to get my first car, and to have the independence to drive.
Throughout Ari's hospital stay, we would see and chat with Tucker often as he walked in circles around our floor. He looked strong and healthy and happy. I was sure he'd have that license one day soon.
But yesterday, Tucker lost his battle with cancer. I am beyond shocked and saddened. I am devastated. My heart aches for his mother and father and 4 siblings and for Tucker himself who fought so hard and for so long and still did not beat this terrible disease.
And though I try not to, it is impossible to not let the news of Tucker's passing make this whole cancer thing feel so much scarier. And so much more real.
As I try to process this sad and unfair event, I will give my little Ari extra hugs and kisses, extra chips and oreos, extra time running up and down hills and ramps and jumping in muddy puddles. I will let him stay up a little later and watch an extra episode of the Wiggles. I will laugh when he wants to run around naked, I will encourage him to get as dirty as he wants, and I will even keep the bath water cold like he requests (but not too cold). I will let him live it up as much as he can.
And I will too. This is how we will keep Tucker's memory alive.