Author : Tim (32)
Wednedsay, March 26 marked two years from the end of treatment. According to Phenon’s doctors that’s a really big deal. Apparently, if there have been no signs of recurrence by two years out, they feel comfortable saying that the chances are, while not exactly zero, so low that they don’t need to keep as close an eye on her as they have been.
As such, last week was the last checkup we’ll go to in the CHNMC Hemotology/Oncology Outpatient Clinic. Phenon and I got to see both Shawna and Payal, a few nurses we’ve gotten to know over the past few years, and that’s that.
Our next appointment, in about six months, will be at a different clinic (still at Children’s) more set up for long-term and infrequent checkups. There will probably be checkups every six months until this time next year, then just yearly visits from there on out. And by “there on out” they really mean Phenon’s entire life. You see, though their worry about recurrence of Lymphoma is low, the treatment itself has increased her risk of any number of things that we’ll need to keep an eye on.
There have been a lot of chapters in this book. This one feels particularly significant to me.
Monday was Phenon’s last day of treatment at the fabulous University of Maryland Medical Center. Rowan and I joined Julie for the special event and loved meeting all the amazing people who have been taking care of our girl for the past three weeks.
On the last day of treatment they call a “Pediatric Code Sunshine” over the PA system and doctors, nurses, and techs who are available come out to the radiation waiting area where the newly former patient rings a bell signifying the end of treatment. I wish my phone could manage to get the sound and video a bit more in sync, but fortunately I’m swinging the damn thing around so much that mostly you can’t tell who’s saying what, when, anyhow:
Then there were hugs all around and that was that: Treatment is done.
…and a dude who is a comedian who went through chemo…well then this would totally be her!
Shit Cancer Patients Say
Since we haven’t updated since Phenon had to go to the hospital with a fever, I’ll just quickly say that she was back home two days later feeling pretty darn good. We’re not sure what caused the fever, but it didn’t stick around for long. So that’s a good thing.
Phenon started back to school yesterday to start the new quarter and we expect that she’s back to full time school’. Home/hospital teaching has wrapped up and she managed to keep up, so there won’t be any classes to make up over the summer.
And finally, the second PET/CT scan was today. This is the big one, the results of which will determine whether she needs radiation or not. We get the results on Monday. I’m guessing that’s the next time you’ll see an update here on the blog.
A big day, today was Phenon’s last chemo treatment. It went pretty smoothly until she and Julie got home and then the fever started going up. We were pretty well set for Phenon’s usual habit of skating right under a 100 degree temp for an evening and then waking up feeling great. This time, not so much.
She only stuck to 99 for a few minutes before she got to
100.9 101.9 which is above the temp that requires heading to the hospital immediately. To say that this made Phenon sad is an understatement.
This really will all be over soon, right?
OK, so I just updated the thermometer to $7942 as a $20 donation came in just moments ago. The way things have been going the past week I’m sure that we’ll be at $8000 or close enough not to matter by the time I finish writing…wait…what? Alright, Julie tells me that $100 just came in literally as I was writing that last sentence. Seriously, I’m typing exactly the words “close enough not to matter” and her phone beeped its “new message” beep and that was that.
It’s hard to describe how grateful I feel right now. How totally flabbergasted and yet, oddly still not entirely surprised I am at the love and generosity that over 100 of you have shown us. It’s enough to make a curmudgeonly misanthrope like myself rethink a world view that I had thought was pretty firmly set.
Ok, I’m going to stop writing for a minute and just post this message so you know that we’ve met our goal because another donation just came in.
Here’s the deal: we have a friend who also has Lymphoma. Hers is going to take a lot longer to deal with than Phenon’s and we’d like to help her if we can. Honestly, we had no idea that we’d reach our goal this quickly and it feels like we can take advantage of this moment and try to direct some of the love and generosity that you have all shown to our family to try and pay forward a bit to someone else who really matters to us.
We’re waiting for her permission to share the link to her blog where she is taking donations. Once we hear from her, we’ll post a link and if any of you who were going to send something to help us cover our costs and just hadn’t gotten around to it yet would instead donate to her, we’d really appreciate it.
As our dear friend Megan said on her blog “you are all magnificent.”
Thank you all,
Tim and Julie
How about some pretty pictures to go with all the learnin’ we had yesterday about PET and CT scans? These are the PET scans we’ve all heard so much about. A little frame of reference: these pictures are a cross section of Phenon from the bottom looking up. The white circles on the far left and right are Phenons humerus (upper arm bone), her spine is at the bottom near the middle, the heart is the white-ish thing between the two dark grey areas which are her lungs.
First the scan from a couple of months ago. No wonder she was coughing!
And now the one from last week.
When last we heard from Julie and Phenon they had been down at the hospital for Phenon’s follow-up PET and CT scans. It wasn’t until this morning that we knew what it showed. So without further ado, here’s a bunch of information about PET and CT scans before we do the numbers.
A Positronic Emission Tomography (PET) Scan is a way of measuring metabolic activity, or the speed of cell growth. Cancer cells reproduce and grow really fast (that’s how Chemotherapy works: by messing with processes that these fast growing cells need to perform very frequently in order to grow). When cells grow really fast they suck up more fuel in the form of glucose (sugar) than other cells. If you bind some radioactive shit to glucose and inject it into a 13-year-old body, the PET scanner is able to take pictures of the “hot spots” where cells are eating a lot of radioactive glucose, thus showing where abnormal cell activity is happening and how much activity there is. At the same time they do a x-Ray Computed Tomography (CT) scan which is, as the name suggests, an x-ray. The CT scan shows the size of the mass. So, PET = functional, CT = structural.
Once the docs have these images they are able to rate the cell activity on a scale of 1-15. Phenon’s first scan a couple of months ago saw activity at a 14, a really frightening high number that indicates cancer cells growing at a very fast rate. It also showed some much smaller growths in the lymph nodes in Phenon’s neck. The CT scan at the same time showed the main growth in her lung measuring 10cm x 10cm x 13.7cm.
This latest scan showed that cell growth was down to a 2 out of 15. Yes, that’s a huge improvement and something that made everyone involved very happy. And the accompanying CT scan showed that the growth has shrunk by about 60% to 7.9cm x 5cm x 6.3cm. Also seriously good news. The other smaller growths are also shrinking quickly.
Round 3 of 4 began today. It was another 12 hour hospital day, but Julie said it was almost peaceful. Phenon doesn’t feel well now, but she’s well enough to want dinner and an episode of Glee. So we’re going to go do that now!