5FU, Miracles, and Awards

Where to even begin... First, I suppose we should try and update this blog more frequently. It's difficult because so many of you are on Facebook - we forget that not everyone is there!

Our seven week stay at St. Jude went as well as we could have hoped. Cam tolerated the new drug well, with some mild fatigue (nothing compared to when she was on thalidomide), and loss of appetite. Anyone who knows our little friend, knows she really can't afford to have no appetite. Thankfully, the doctors at St. Jude listened when I pushed about Campbell's weight. The problem we were having is that Cam has essentially been treated by four different neuro-oncology clinics in the past year, so no one single clinic had witnessed her weight loss. I am grateful that the folks at St. Jude listened to Mom. Cam was started on an appetite stimulant, in addition to drinking two pediasures per day and having a calorie goal of 1300 calories per day which she tracks on the Livestrong app on Mom's iPhone. It is amazing! She is actually EATING. We even had a deal if she got back to 21 kg, she could tape my happy dance and put it on Facebook. Oh, the things a mother will do for her child's well-being! Yes, she did both - gained the weight and embarassed her mother.

We had a few exciting events at St. Jude. It truly is an incredible place. The girls and Greg came to visit in the middle of our stay. We had a terrific time together, even if it was brief. Definitely included a trip to Waffle House and Rendezvous (Caroline is still asking for more ribs). The powers that be at ALSAC, the fundraising arm of St. Jude, asked Campbell to participate in a few photo shoots to be used for publicity and fundraising purposes. One of these involved a trip to NYC for a photo shoot with Marlo Thomas! Keep your eyes open this holiday season, you just may see Miss Cam smiling back at you when you walk into the mall! The best part about our trip to St. Jude was a GOOD SCAN for the first time since Cam's cancer came back in June 2011!!!! All tumors were stable, with one tumor actually significantly shrinking! AMAZING!!!

Cam is continuing on the same protocol from home, with the infusions administered by her team at Memorial Sloan-Kettering Cancer Center. Cam is now back to scanning every 12 weeks (or two cycles). Her next scans are 6/11 and 6/12. Ironically, the anniversary of the surgery to remove the first recurrence is on 6/13 - the day we will meet with the neuro-oncologist at St. Jude to get scan results. Another one of the many bizarre coincidences in Campbell's life!

Speaking of coincidences...I swear, if I were to try and explain all of them, it would take me DAYS! Suffice it to say that we witness God in our life daily. Campbell was selected by the Order of Malta for a pilgrimmage to Lourdes, France to bathe in the healing waters. Many, many prayers have been said, but I don't think any as strongly asking for Campbell to be the 68th miracle attributed to Lourdes. Greg and Cam returned home today, just in time for Campbell's 7th Birthday! I will ask Greg to write an entry about the trip. From what he and Cam have told me, it was incredible and life-altering.

Another coincidence to share - during Hurricane Sandy, right after Campbell's last brain surgery, we could not stay in our home because there was no heat (no electricity) and temperatures were dipping below freezing. Normally, we do not ask for a room at the Ronald McDonald House in NY because I feel those rooms should be reserved for those who canNOT commute to NYC. Greg does it daily for work, so Cam and I certainly can do it for doctor's appointments. However, the week after Cam's surgery, she had three days of appointments in the city. The tunnels were closed because of flooding. There were travel restrictions placed on the George Washington Bridge. Gas for cars was unavailable because the gas stations did not have power and therefore could not pull the gas up from their underground tanks... My point is, I felt it was time for us to ask for a room. We stayed at the RMH for the week, which was a blessing. During that time, Campbell was able to participate in piano lessons they offer once per week. Her eyes filled with joy and excitment. They sparkled! I was on a new mission. I wanted to find my baby a piano and piano lessons once things settled down. Fast forward to Christmas. I have accepted that a real piano is not in our budget. My mother buys a keyboard which is perfect for Cam. She loves it. I vow to look into using that keyboard for lessons. I can't help but believe that the mental stimulation that would go with playing the piano would be beneficial in some way. We finish radiation for the fourth time at the end of December, have a four week pause in January, complicated by several transfusions and stomach bug, and then head to St. Jude at the end of the month. Translation = no progress made on the keyboard lessons. Out of the blue, I get a Facebook message from an incredible woman whom until three years ago had no knowledge of Campbell, then she heard about Tara Gilvar's pie sale for Campbell. Since then, Grace has shown up in our life at the most bizarre moments. I swear she is an Angel on Earth. There is no other way to describe her presence in our life. In this out of the blue message, I believe it was late January or early February, she says she wants to give Campbell her piano. I am stunned; speechless (which does not happen often). I struggle to find a response. We chat about it a few times. Greg and I come to terms with accepting such a generous gift, putting our pride to the side for the benefit of Campbell. I should also add that Grace has a side-kick, Margaret, who just so happens to be a concert pianist and has offered to give Campbell lessons. See what I mean about coincidences? This stuff does not just happen. There's more to this story, and I won't even go into all of the details. We agree to accept the piano, find a spot in our new home. Grace and I set up a day for a delivery (which was donated by a person who happens to be a friend of Grace who happens to move pianos for a living and happens to have a son with a life-altering injury - see - again, there are too many coincidences). Sloan-Kettering calls the day before the delivery is scheduled (in the morning) to say they want Campbell there at 11:30 the next day for chemo. I had asked for a later appointment, with the piano delivery in mind (which was coming between 8 and 10). This was the best MSK could do. I had two choices - go on faith that it would work out or call Grace and reschedule with all of these amazing people who were doing something incredibly kind for my daughter. I went on faith. And it worked. The piano was here by 9am. Campbell was so excited she could not sit or stand still! Then Grace texts me to tell me that when she was moving the piano she found old papers from thirty years ago (this piano has it's own incredible history). The papers have the name Campbell on them. I know that Campbell is not an uncommon last name, but really? What are the odds? Again, coincidence? Nah. Grace says it's another sign. Lo and behold, Campbell is now the proud owner of a beautiful piano and is beginning lessons next week! All thanks to the incredible generosity of two amazing women who barely even know my daughter! They are Angels here to help my Cam. How else can you explain it?

Now for the award part, in another bizarre twist, my high school honored me with the Distinguished Alumni Award last week for my work raising awareness of childhood cancer. I still don't understand how having a big mouth gets me an award, but I'll take it! I am so honored and flattered. I was speechless when I heard about it (again, speechless). And then I realized I would have to give a speech. I changed majors in college to AVOID taking public speaking. That's how terrified I am of it. It's kind of funny actually. I was being given an award for basically having a big mouth and yet I didn't want to talk to all of those people at the same time! I tettered back and forth right up until four days before leaving for NH on whether or not we would be going. Then I saw a post on Facebook. It listed a few childhood cancer statistics. I can't find it now, of course. But at the bottom it said in a larger font and in bold print - YOU ARE NOW AWARE. GO SPREAD THE KNOWLEDGE. Another sign. I knew I had to give the speech at my high school. It was my opportunity to say something about childhood cancer to hundreds of people all in one shot. If each of those people tell one person and so on... it's the ripple effect. So we went. I saw old teachers, even my old chemistry teacher whom I have told current doctors about. I've said he would shake his head in amazment if he could hear me talk now - all the scientific mumbo-jumbo. Yep I used the word mumbo-jumbo to describe science.

I saw fellow classmates, including a dear friend who presented me with the award. I saw my former high school advisor, who moved away from NH years and years ago. My mother had even commented to me that the only thing that would make this award better is if Ms. Cass were there - lo and behold, she was! Look at that, another coincidence! She was there to present my classmate with the Alumni Service Award, which just so happened to be the same year and the same awards cermony I was attending! I was terrified when I stood up. I had practiced my speech a dozen or so times. The first time, I was crying by the end and I was the only one in the house. Not a good sign. I was wearing a ring Campbell had given me from the Treasure Box at Sloan-Kettering that week and had her picture on the podium next to my speech. I had told myself if Campbell Grace can be brave for all of the scary, horrible things she goes through, I can give be brave and give this quick 4 minute speech. I owed it to her. I spoke. I got a standing ovation :-). It was such an adrenaline rush once it was over. I must say that I actually loved getting through to that many people! We toured the much expanded campus (it has after all been over twenty years since I was last there) after lunch. I was stopped seven or eight times by different age students, all telling me some facsimile of "good speech". These KIDS listened. Wow. These kids are the kinds of kids who make change happen. And change is what the childhood cancer world needs.

On January 27, we headed to St. Jude in Memphis, TN. We had a whirlwind week of appointments in preparation for starting the new trial at St. Jude.
Cam's hemoglobin continues to struggle to come back up to normal. Radiation and the adjuvant chemotherapy (oral etoposide) used during radiation really beat up her bone marrow, impairing its ability to generate new blood cells. We hope this side effect of the therapies used in December will subside soon; especially since the new chemotherapy is likely to have a similar effect.
Cam had her first infusion of 5FU last Thursday. It was rather uneventful, being only a 5 minute push of the drug. However, it requires timed blood draws for 2 1/2 hours after the initial push. They are checking on levels of the drug in Campbell's blood (this is a normal procedure). The only noticeable side effect has been fatigue. Our little friend naps daily, sometimes for 2 hours or more, sometimes a quick 20 minute cat-nap in the car is enought. About the car, we need to give a big shout-out to old family friends, the Forsees, for generously loaning us one of their cars during our stay in Memphis! This has been a huge blessing! Our previous 6-week stints away from home for treatment were all in Boston, with a great mass transit system, walking distance to Whole Foods and many delicious healthy restaurants. Unfortunately, the area around St. Jude is not the same as the area around Mass General. There is really nothing within walking distance. Thus, the car has become a must. If we were not so blessed, I certainly would have been renting one!
Cam and I went to the zoo yesterday. We had a blast. I'll see if I can get pictures from my phone onto here...
Assuming Cam's counts are okay tomorrow, she will have infustion 2/4 for this cycle. Fingers, toes, arms, legs are all crossed for good numbers!
This evening, I'd like to take a moment and ask you all to pray for a friend of ours, Aaron Bell. He is a fellow ependymoma patient who has been fighting the same beast as Cam for the past 4 years. Just yesterday, he and his family learned there is nothing more the doctors can do for him. The scary thing is, he had a good scan just 3 short months ago. Then in mid January he started to feel funny on the side of his face. Sure enough, an MRI showed his tumor was back. Since then, in only 3 weeks while on a new chemotherapy at St. Jude (not the same one as Cam, but one that shows promise), his tumor exploded. Aaron and his family need prayers and good thoughts.
Life is precious. It is a gift. Please remember to treat it that way. Be kind to everyone. You never know what they are going through. You never know when your life could change.

I apologize for not updating the blog in several busy months! First, October 18th's scan was not mixed. On a good note, 5 areas were stable, one was no longer visible at all (yay!). On a bad note, the two largest brain tumors found last summer had bob grown significantly. Cam was taken off the CERN trial of Avastin and Lapatinib immediately. Surgery was scheduled for the following week and next steps were discussed. The timing was good for Cam. It turned out that the semi-annual CERN member's conference was that weekend! Cam's neuro-oncologist at Memorial-Sloan Kettering Cancer Center attended the conference, bringing Cam's scans with her. The board held a multi-institutional tumor board meeting on Campbell's case! We had dozens of the best Ependymoma minds in the country discussing Campbell! It was universally recommended to remove the largest brain tumor, which had doubled in size in 6 weeks. It was in the top left side of her brain, near the speech center and putting her at increased risk for seizures. It was also universally recommended to treat her brain with additional radiation (IMRT this time, not protons like done previously), in conjunction with etoposide (oral chemotherapy) as a stabilizer during radiation and followed by a new chemotherapy after radiation. So, we had a plan. Surgery was a success. Dr. Jeff Greenfield of Weill-Cornell/MSKCC was able to remove the entire tumor. Cam suffered no real side effects from the surgery or recovery. Her speech actually seemed to improve, indicating perhaps she had been experiencing symptoms and no one realized it. Campbell finished 30 rounds of cranial radiation (to everywhere except the area irradiated the first time three years ago) on 12/28. Cam ROCKED it, doing radiation for the first time without anesthesia! This was HUGE! You may not remember, but Cam has issues with anesthesia, especially the drug of choice for radiation and MRIs, which is protocol. Campbell calls it the angry medicine. It makes her psychotic! So, being able to do radiation without anesthesia was a blessing. Cam experienced some fatigue from radiation, although was able to go to school for at least a half-day nearly every day during treatment! The biggest side effect was hair-loss in all areas of her head receiving radiation. Basically she has a little patch left on the top rear of her head. Oh, well. She's a trooper. Nothing phases her. She just took out her extensive hat collection from last year! The only other complication since December is a low hemoglobin, requiring 5 transfusions between 12/13 and 1/13. This is likely a combination of the etoposide (which was stopped, as planned, on 12/26) and the effects of radiation on the body's bone marrow. After rocking radiation without anesthesia, our friend wanted to try her MRIs awake! MSKCC installed MRI movie goggles last month. These goggles are MRI safe and are similar in look to an old-school view-finder. Because Cam's scans take close to 2 hours, they are scheduled on two different days when done awake. Cam had her brain scan yesterday. No surprise - she rocked it! Wasn't phased or fidgeting at all! I was able to stay in the room with her, holding her foot the whole time. Right now, Greg is in with her for her spine scan. We will get the results later today. In addition, Cam had labs drawn this morning. We will see if she needs another transfusion in a few minutes. The plan for chemotherapy after radiation is a new clinical trial only available at St. Jude. They are using an old drug called 5FU to treat recurrent Ependymoma. The first cycle is done at St. Jude in Memphis and lasts for 6 weeks. After that, if Campbell is responding, subsequent cycles can be done at your home institution. This drug has had promising results in the lab and a few patients so far. It is nothing like anything else Cam has been on, so we are hopeful this is The One. I know I have missed something! Sorry! I promise, now that I know I can update the blog from Cam's iPad, I will do it more frequently. Starting with today's results! One last thing: Our dear friend, Sandy Whelan, Watching Hills High women's basketball coach, and her Lady Warriors are hosting Summit High School in a GOLD GAME this Friday at 7pm at Watchung Hills. They are raising awareness of childhood cancer and funds for the Campbell Hoyt Medical Trust. If you are in the area, come show your support! Campbell will be there helping Coach Whelan on the bench!