Rehab

Hi-- Will speaking here. So, after my cortisone shot, my doctor said I needed to get some exercise to help my back get back into shape. So today, Xavier, Tilly and I did our own unique exercise-- groovin' to Micheal Jackson's Thriller!
I'm not sure my back feels better, but at least the kids are up on their 80s pop culture. Add that to Xavier's knowledge of Voltron, Star Wars and He-man, and Tilly's birthday acquisition of My Little Ponys, I think they're in good shape to defeat their generation in a game of Trivial Pursuit.

In terms of Aimee's progress, both of the last 2 pet scans have revealed no significant change. So she's going to continue using RAF-265 until something changes (hopefully for the better!). She started cycle 2 last week, and she'll have another pet scan (and maybe biopsy) in three weeks.

The Non Report

Xavier told me today that I was getting N-O-N flowers for Mother's Day--He meant M-O-M...I hope. In any case, here is my non-report...Today I had a ridiculously long PET scan. I was in there for hours thinking about how nice the folks in radiology were, how I didn't really mind the PET scans too much anymore, how I was going to get a nice sandwich on the way out, how much fun Xavier and I were going to have making lasagna for dinner. Then the machine made odd crunching noises and when he pulled me out, the tech looked worried. They never look worried. He quickly explained that he somehow had missed one of my big toes in the scan and he would have to call the doctor to see if he could leave it at that. Of course he couldn't, of course I should have refused and left, of course I didn't think of that until when, an hour later, I was back in the tube again for an extra half hour. By the time I was done, it was 6:30; the sandwich shop was closed, it was too late for lasagna and I have seriously been reassessing my assessment of radiologists. Ah well, at least I got a good nap. Reports should be in fairly soon--big toe included.
As for my biopsy, my nurse told me in all seriousness, that the Beth Israel report had come back, and it looks like...I have melanoma. Boy, did I laugh. I guess that is as far as their pathology report goes and the rest is still going to take some time as it has gone back through the drug company. Sorry to keep you all in suspense.
I hope you all are well. With love.
A

Overheard at the Cowan House

This afternoon, I overheard Tilly's first knock-knock joke.
While Xavier was busy in the little boy's room, Tilly stuck her head in at the door and said "knock-knock." Xavier, of course, responded, "Who's there?"
T: "Knicka Who."
X: "Knicka Who who?
T: "Knicka yous Head!!!" She screamed in delight.
I don't have a clue what it means, but they both burst out in uncontrollable laughter so obviously they did.

This evening, they were rewarded with some pudding for desert, which Tilly-as is her wont-promptly smeared all over herself and her sweater. Xavier then asked me if I would please wash her sweater tomorrow since I was in the "washing department."

And since I am telling tales...recently, Xavier wanted to know why Poppi had old hair, but no cracks in his face.

Tilly got upset because I called her honey. "I NOT honey," she fumed. "I sweetie! Daddy honey!"
She asked me to help her with her coat: "Zap my zeeper, Momma!"

In other words, all is well here. We are very busy and entertained. This week, Will got his cortizone shots for his bad back, and it seems like the pain is starting to ease up a bit. Hopefully, I'll hear some biopsy results tomorrow, as I am scheduled to start cycle two. My next set of PET scans has been pushed back to Wednesday but that should give us a better sense of if we should go on with this drug or switch to something else. As always, we'll let you know how it's going. Lots of love and thanks for all your love and prayers,
A

Tilly is Two!

Rounding out our April birthday trifecta, Tilly turned two on Sunday. She told us she didn't want any presents, but when we actually set them in front of her, followed by the cake with lit candles and singing, she literally shook with excitement...



Also, my pet scan results from last Tuesday showed no major changes from my end of March scans. (No news on the biopsy yet.) I have another round of scans next Tuesday, which hopefully will give us a clearer picture of results. I'll let you know when I hear.

Thank you for all your good wishes and love this month.
Aimee

Biopsy

I had the biopsy on my neck this afternoon. No problem...much worse in the anticipation than in the fact. It was a very big needle, but only three tiny holes. It didn't really hurt at all.

Update (as Requested by Meg)

We have been having a very good week--full of cake, sunshine (it got up to 80 here yesterday!!!) and flowers. Things continue well on the RAF front. I am feeling well. On Tuesday, I had another 8-5:30 day at the hospital with EKGs and blooddraws and so I was able to get copious amounts of grading done. My sister Maryagnes and her children came and walked the thrilled Xavier and Tilly all over Somerville--and when we came home that miracle-worker managed to have dinner and cake ready for us, despite having seven children underfoot in a small apartment. Yesterday, I had bloodwork done and a PET scan and today I will have two small tumors biopsied on my neck. This should not be a big deal; in fact, Dr. Frankenthaller, one of the top five head and necks in the country, thought it was so minor that he took the week off. Instead, Dr. Mullen will just be doing a punch biopsy, which will not involve the OR or major anesthetics. I should get results for all of these next Tuesday and we will let you know what those are. Meanwhile, I hope that you all are very well and enjoying the glorious spring weather. With lots of love,
A

Four Years Old

This last Sunday, Xavier turned four. He had a great day. We had a last minute change of plans; since cousin Vinny D's baptism had to be postponed, the cake got relocated to Somerville. Xavier requested Yoda, Luke Skywalker and Jessica Rock for guests...Jessica made it and the local Cowan contingent supplied the Star Wars action figurines that made him forget entirely that the actual Luke and Yoda never showed up. Everyone enjoyed balloon tosses, star wars and Transformer games, and enough play dough to go around. However, it was Tilly who really had the best time. We were busy organizing things in the living room when Tilly sidled up to me and announced, "Momma, I'm eatin' Bubba's cake!!" And she had the chocolate hands, face and dress to prove it. But the damage wasn't too bad to stop the rest of us from also enjoying the cake...





And here we are, happy and asleep, at the end of a long day.