Phenon Updates

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!

This is going to be a really short post since I’m at work (shhh…don’t tell anyone at Beaconfire!).  Phenon is off to a half day at school today and is super excited.  As are we.  This is her on her first day back. Note Allegra’s shameless bid to get in the picture.

Yesterday was day 8 in Phenon’s second round of chemo: the day she gets blood drawn, a couple of drugs and that’s that.  It’s also the day when, in the first round of chemo, she totally crashed and went back in to the hospital for what I think ended up being five days.

Gabbie the Birthday Girl and Phenon

It’s been a month since Phenon has been outdoors for anything but going from house to car and car to hospital (the latter of which is in a parking garage so it really doesn’t even count).  So it was a huge milestone that we walked the dogs yesterday.  Even huger(ier) that it was an entire mile!  She seems to feel pretty much like an entirely healthy kid, is eating like crazy, and really enjoying the freedom of not being in the hospital.

After a breakfast of nearly half a potato and snausage quiche made with half-and-half and at least a stick of butter, we ventured out, assuming to make it to the woods entrance a couple of blocks away and then head back for recuperation.  After all, it was only a day after a walk down the hospital hallway completely wiped her out.  By the time we reached our normal turning around spot, Rowan was complaining of hurting feet/ankles/knee/whatever but Phenon was going strong.  It’s not like she was running ahead and yelling at us to catch up or anything, but she was doing great. We stopped and chatted for a bit with Mike and Mayumi who were out walking Dewey.  It felt really good to be out in the world again.

We made it home in time to rest for a few minutes before visits began.

First up was Eve (my lovely co-worker, Creative Director of the amazing Beaconfire) who delivered some really awesome bandanna decorating supplies, bandanas, a canvas bag for decorating, and lip balm from her housemate Kim.  We all spent a few minutes goggling over how much cooler craft supplies are now than when we were kids (I used to have to walk up hill in the snow for a bottle of liquid beads!).  While we hung out and talked with Eve, Aliza arrived for a visit.

I’m not entirely sure what they were up to because they holed up in Phenon’s room while Julie and I chatted with Mike in the living room, but Aliza did emerge with lovely fingernails, so I have my suspicions.  They had to leave much sooner than Phenon wanted so that she could get a little rest before the next visit from Brianna and Griffin.

While the kids did nails and more Julie, Melissa, Laurie, and I (Jean, too, for a while), had some drinks and talked.  It felt great to just be one of the girls again!  It’s really amazing the amount of nail polish Phenon now has.  Add to that the nail pens, stickers, and new techniques, the nail work coming out of that room is really quite a thing to see. I’m sorry I haven’t taken pictures of them all, I’ll try to do better next time/in the future.  Brianna and Phenon did dig in to the bandanna stuff and made some really cool looking things that I did take a picture of.  So here’s that.

By the end of the day, Phenon was commenting on what a great day it was.  She had played on her keyboard, learned new parts of a song (thank you, YouTube), hung out with friends, organized her room, eaten 6 meals, and had no need for anti-nausea medicine.  She was chipper, proud of herself, and full of yummy calories.

The only downside to the day is that, right on the predicted schedule, her hair began falling out in earnest yesterday evening after all of the fun.  She got a little bit of alfredo sauce in her hair, and when she went to clean it off, a big bunch came right out in her hand.  She was terrified and really kind of horrified.  After much upset and soothing, she did recover, and was able to chat again, happily, about how much she enjoyed her day. However, she did ask to go wig shopping today, and is feeling pretty urgent about it. More on that topic (hopefully pictures!) later.

As is common with chemotherapy patients, Phenon is back for a brief stay in the hospital. She had a low grade fever for an hour and that means back for tests to see if she has an infection; An obvious side effect of treatments that weaken your immune system.

Best case scenario is she gets some antibiotics and comes home tonight.  Less best is a night or two in the hospital while they get things under control.

Julie took the her down to Children’s a couple of house ago and I’ll update again when I hear what’s going on. 

Today Phenon and I went down to the hospital early so that she could get a dose of etoposide phosphate to make up for the etoposide (not phosphate) that she had the allergic reaction to and, therefore, did not actually get.  Things could really not have gone more smoothly. We got down there in good time and didn’t wait more than fifteen minutes before they called us back.  Totally different than yesterday’s debacle.

I joked that I was just charmed.  A joke that Julie found less than funny after she drove down later in the afternoon to pick up a prescription that we had to have today that never showed.  She waited an hour or so after they said it would be there and then drove home while the hospital pharmacy sent someone to our house to hand-deliver the goods.  It was really nice of them, but I’m definitely done commenting about how smooth the morning was.  Or suggesting that I’m somehow just lucky.

Mostly what Phenon did today was sleep.  She slept while the chemo was administered and then again after we got home for more than three hours until Julie got home.  Then she woke up, vomited for a while and we had a nice family dinner and watched Glee.  We all agreed that this latest episode was not very good but that it was very interesing how teenagers all seem to go through the same things at the same time as each other on Glee.  This was the week when they all decide whether to have sex or not.

Anyway…all-in-all a pretty decent day.  However, Phenon’s stomach is more frequently feeling just BAD, and her mouth has a constant burning sensation that we suspect could possibly be the beginnings of thrush.  Tomorrow Phenon goes to her pediatrician (no hospital!!) for a shot of colony stimulating factor (to promote the growth of new white blood cells), and then it’s just prednisone pills for the next three days until one more half day (well, it’s Julie that’s on duty that day, so half-day, whole-day, in-patient hospitalization, well just have to wait and see) in the clinic for some more of the nasty shit and then NO TREATMENTS FOR 13 DAYS!!!!!!

And then it all starts over again.