Officer Seneca With Faye

Children's Hospital is always a busy place, but last week as we neared the Hospital we noticed police everywhere and on every corner.  Even more police were in the parking garage, the entrance and inside.  I have to admit I was a little nervous but we soon found out it was 'Cops Fighting Cancer' day.  Officer Seneca, pictured left, is a leukemia survivor and he founded 'Cops fighting Cancer' nine years ago. This year over 150 officers from more than 30 different agencies delivered gifts (and lots of smiles) to every patient at the Hospital.



Radiation Room

PET technology is fairly new in the diagnosis and treatment of cancer and it apparently is the only way to measure active cancer. Faye's latest PET scan showed about the same amount of residual active cancer as the previous PET so last week we were diverted to evaluating different treatment options; more chemo, chemo with the radiation, etc. After numerous consultations with a number of Hodgkins experts our Doctors identified a general consensus to give boosted radiation in additional radiation treatments.  So now instead of roughly three weeks of radiation Faye will have five.  Radiation therapy tends to cause 'false positive' results on PET scans so we will have to wait a full three months after the final radiation treatment to have the next PET scan. Three.  Long.  Months.

Throughout treatment prioritizing school work has been particularly difficult to juggle. At times it seems super important and other times it is not important at all.  With the Holidays it is even more difficult to prioritize but as I write this post, Karl is tutoring Faye on 'Optimization'... holy freakin smokes(!). I used to be an excellent math student but I take one look at the stuff they are studying and walk away.  Fast.  I can't even contemplate how lost we would be without Karl's help. If Faye can stick to Karl's schedule, she will be caught up in Math by the end of break.  And more good news: thanks to Bev, who has been unbelievably generous with her time and who has been invaluable in getting us organized, motivated and moving forward, Faye is caught up in English.

I'm including below a couple more photos and a short video clip from the day they mapped Faye's radiation.

Merry Holidays, Peace and Goodwill,  ~Lolly

Radiation Mapping & Simulation

Two weeks ago Faye had one of the best first weeks of treatment ever but we must have jinxed ourselves because this past week was one of the worst. Faye's counts just would not recover and it was a busy week with fevers and infections, antibiotics and transfusions. Yesterday morning we went in for the radiation simulation, the PET CT scan and a quick blood test. The quick blood test turned into several hours of blood transfusions. Dr. Garrington stopped in late in the day to give us the initial interpretation of the PET results. They were not optimal but he is confident that the radiation will wipe out what's left of the mass and the metabolic activity. In another day or two we will have more quantitative results. Last night as we drug our tired selves to the car we were excited to see the 12 days of Christmas all lit up in front of the Hospital and very little traffic going home. Faye is feeling much better today, in fact she was able to get in a few hours of tutoring with Bev this afternoon. We are scheduled for another blood test Thursday morning which will hopefully reveal counts high enough to start the radiation which is scheduled the following Monday.

PET CT Scan

The radiation mapping and simulation was pretty darn amazing. To make the body cast two clinicians (Aaron and Christy) mixed up a large plastic bag full of liquid and placed it under Faye. As the liquid foamed and hardened around her body they made a head cage by draping a warm and gooey mesh over her face and head which then molded and hardened as well. Then they made four 'permanent' cross hatch marks on her body. All of this will be used for her 14 radiation treatments. We discovered that Aaron and Christy are also both big fans of 'Dexter', Faye was amazed to learn that Aaron is hosting a Dexter season finale party next week and he's changing his TV room into a kill room lined with plastic sheeting and all. Dexter really is a sick and unusual form of entertainment but I've given in to it: the shock factor has proven to be very effective in distracting Faye from her misery. ~Lolly

U17 United Soccer EOS Party -2011

It took some effort to get there but on Sunday evening Faye was able to enjoy a bit of her soccer team's end-of-season party.  The next morning we were back in the Hospital for the last two chemo agents of this fourth and final round.  I hesitate only slightly using the word 'final':  while I have no doubt it is Faye's 'final' chemo the reality is that there is no certainty.

Faye's discomfort had been 'manageable' relative to the first three rounds up until Monday afternoon when extreme nausea, pain and discomfort set in. This morning Faye is finally experiencing some relief and the 'ick' is now coming and going in decreasing waves.  We have one more big hurdle before moving on to radiation:  getting through the drop in blood counts/ANC over these next few days.  We are scheduled for a blood test early tomorrow morning and we anticipate another blood transfusion because Faye's counts were already low going in to this round.  We will also schedule Faye's last PET scan probably for later next week:  we have a lot of hope and expectation riding on the results, think positive thoughts and send them our way and I'll keep you 'posted'!  ~Lolly