Sunday, Jan. 1, 2006
Cancer we'll fix, 2006!
Dear Christi’s Caring Crew,
Hello! Happy New Year! It's been another very long week and today I sit in reflection upon the past three years and its many "slogans". We tried "Cancer free, 2003!" without any luck. "Cancer no more, 2004!" which again didn't prevail. Last year a Prayer Partner suggested "Cancer Aside, 2005!" which turned out to be quite appropriate as Christi enjoyed a great quality of life despite all of her treatments. This year another sweet Prayer Warrior suggested, "Cancer we'll fix, 2006!" So that is our hope and prayer, but it seems like that is still against all odds....especially now.
After many hugs and kisses with Shayla (both Christi and I - the girls couldn't part it seemed) Christi and I were soon filling up at the BP gas station (Thanks to sweet friends for a Christmas gift gas card!!) and heading to
Unable to get a $15.00 room at the Ronald House due to so many families needing a place to stay, I went outside of the Philly airport to catch a cab to the hotel they referred us to downtown - in the heart of a city so rich in our country's history. I raised my hand to hail a cab and before I could even say, "We the People," a taxi pulled up and Christi burst into a fit of giggles. (So much for my history lesson on the Constitution! OK, I wasn't so certain how much I could recite anyway.)
After the first day's testing, I spoke with Shayne and told him that I had forgotten how totally grueling and exhausting it is. It's not just the "hurry up and wait" for each appointment, or the hectic and crazy appointments themselves, but the emotions and stress that go with it all - and being away from my other child and in an expensive city, ugh! I was wiped out! I'm really sick of this life, yet when I think of the alternative I'm so grateful and feel very, very blessed to still be in this fight!!
A huge disappointment came on the first day while meeting with Dr. Mosse who was explaining the trial. At the end, I asked what her LDH level was and if her blood counts were back yet. The wonderful nurse practitioner, Pat, pulled them up to check. Her face changed as did the entire room's atmosphere. Her blood counts were fine (Platelets back up - whew!) however her LDH level (the marker that is very good for Christi in terms of disease activity and amount - the one that measures tumor activity) was as high as it was this summer. Again, it had skyrocketed to 1,036!!! So any talk that Dr. Mossee had just given Christi - "What we do know is that this treatment works best on kids like you who don't have a lot of neuroblastoma left," all went out the door. I felt like I had just been kicked and any nausea that had started to subside due to the flu was now back in full force. I couldn’t eat.
Days earlier, I had emailed Dr. Mossee (Dr. Maris was out of town.) as I wasn't sure how she'd be with Christi. I explained to the doctor that even though Christi is large for her age and is in the fourth grade, she's only eight and we keep her sheltered and intend to continue doing so until that is not the best approach - in our minds. Additionally, I told her that we are calling this study a "protein fusion" treatment because Christi has very bad memories of her "antibody" (3F8) treatment days in NYC even though she was only five at the time; the pain was horrendous.
Dr. Mossee was great about using the words "protein fusion" instead of "antibody" as I sat there on the edge of my seat with my heart pounding ready to jump in if needed. Christi was her bubbly little happy self kicked back on the examining table until Dr. Mossee said, "First child.." then Christi sat up and said, "What do you mean 'first child'?" (Christi is the first child at CHOP to attempt this. We know CHOP’s scheduled child #2 and his father has jokingly told me to leave a mint on the pillow for his son - so funny!) I watched Dr. Mossee squirm a bit, but she answered all of Christi's questions very well in my mind. (I was surprised myself that even though this is a Phase II study only a few children have ever attempted this - and with all of the adults the total number at this time is a mere 70 people in the world, the vast majority adults, just a few children.) Once again this little pioneer is blazing a trail - I hope it's the trail to a cure for all children one day! I always find comfort in knowing she may one day help other children too. Recently I received this email from a fellow Ohio NB mom:
“I have been keeping tabs on Christi for a long time. I heard about her site shortly after our daughter was diagnosed and have been keeping up since in fact I must thank you because if it weren’t for your site we wouldn’t have known a lot about Philly, ABT or Texas... which we have tried them all and I’m sorry Christi had to even go through them but having done them led the way for us (you know what I mean) ... Also thanks to Christi, we had a chance to meet Alex’s mom and we too did a couple of lemonade stands for a worthy cause...”
I asked Dr. Mossee about the dosing level and learned it was set in the Phase I study at the fifth dosing level. The dosage is roughly 12 meter squared. The adult dosage is only 7.5 meter squared so once again these kids are getting A LOT more of this drug as for whatever reason little bodies are typically able to handle more medications than adults can. People tell me all the time, "Kids are resilient," but that always makes me cringe as I know treatments take a huge toll on little bodies and after years sometimes their little bodies simply give out. As we’re nearing the 3 ½ year mark of straight treatments that is a fear of mine. How much more can her body tolerate?
Dr. Mossee explained to Christi that she's going to have very high fevers, feel dizzy, maybe confused and not quite right and have chills, aches, diarrhea and nausea. She explained that this should stop after the infusion and they will give her medications before infusing her with the hu14.18-IL2 (an experimental drug, not yet FDA approved) to help stop some of this. They’ll premedicate her with Bendryl, morphine, Tylenol, Indocin and other meds will be ready if needed. Christi asked how long the infusion was and learned that it will be four hours long for three days. She asked if she could go to the playroom when she wasn't getting the infusion and was happy that the answer was yes. They told her that she could ask for more medicine to help with the pain and not to be afraid to tell them if she isn’t feeling well so that they can help her get through the treatments.
Christi wanted to see a hospital room because she couldn't really remember staying at CHOP back in 2003 (She was only six). Dr. Mossee told her that if all goes as well as possible, she'll only need to be in the hospital for the three-four days, then she can stay at the Ronald House and just come back to the clinic for check ups and blood work. That worked for Christi! So we left and went to the inpatient part of the hospital to go check out the rooms and playroom. She was pleased with all of that! (I was pleased that they now have all private rooms and that they said they have wireless for our Internet connection, but I’m still doubltful that is true that would just be “too good to be true”!) And Christi believes that she will hang out more in the "teen room" side of the playroom now that she's more into "teen things". (Yeppers, cracked me up, but I did my best to keep on a straight face and to agree with her.)
After a very long day, Christi didn't want to walk to the used bookstore she loves so much. Instead she asked if we could just get a taxi and go back to the hotel and watch cartoons - worked for me. Later that evening we walked to a fun place called "Liberty Shops" where we bought some chocolate covered popcorn (after she sampled at least four!) and she found three "best friends forever" bracelets at Claires (Thanks, Grants!!) "I've never seen three, best friends forever bracelets before! They're for people like me who have two best friends!" She's anxious to give them to Kaylyn and Theresa this week at school. The hotel room had huge windows with a large ledge / windowsill so we were able to both sit together and hold hands on it. We pretended we were rich and we lived there and had a great time watching all of the taxis and busses on the busy street below. We watched a Disney movie on TV all snuggled up together before we fell asleep. I was trying to soak up every moment with her fearing the news the next day may bring. My gut instinct was right.
Thursday morning found us back in yet another taxi cab and again off to the hospital for an early morning appointment. Not thinking, I had our coats and suitcases locked up for the day with a social worker so when it was time to get her feast she enjoys after having to fast for her bone marrow procedure I found myself running through a cold December rain to the restaurant “Au Bon Pain” a block away. I could only laugh at myself thinking, “Before cancer, I never would have done this for my child!!” I returned with her requested bread bowl with broccoli soup before she was out of the procedure room and awake. When she woke up and felt well enough, she ate every bite! (So much for my plan to eat her leftovers!)
Because we had two and a half hours to kill, I asked the nurses if they’d please call the MIBG department and see if they by chance had any earlier appointments and maybe we could catch an earlier flight home if they did. When the sweet nurse hung up she told me, “They can take her right now,” so Christi limped (the bone marrow procedure is very painful and the morphine was wearing off) and off we went, slowly. I then called Shayne and asked if the airlines had an earlier flight and if there were two open seats. The next thing I know I was in the dreaded MIBG scan room and Shayne text messaged me back that we were confirmed on a flight instead of the flight, whew! (Only problem was he didn’t know we also had an Xray appointment to squeeze in somehow and to get to the airport.) When I finally got to talk with him he told me that our original flight was already delayed one hour so he thought, “Why not get them home a few hours earlier?” I know he hates it when we’re away and he worries so much.
So the MIBG Scan began. Here’s our text messaging:
Angela types: Scan started.
A: bright spots in head
A: many ribs.
A: arms, pelvis, legs, we’re sunk
What a crushing blow! During the hour long scan I asked the sweet technician to pull up her August 17th scan so I could do a side by side comparison after I was seeing all of the new areas of cancer. (Pretty bold, aren’t I?! Thankfully, after working with the same great MIBG folks for over two years now we’re all on a first name basis!) Unfortunately, it had been archived already, but she was able to pull it up for me in another room for me. What a sweetheart! This scan looked nearly identical to the August one. I somehow managed not to cry for a few hours; I guess I was concerned about getting the Xrays done and getting a taxi and catching our flight home. At that point all I could think about was getting out of the hospital and getting HOME! It was like I was trying to flee and to run away from it all. This can’t be happening to my beloved little girl! Sadly, reality dictates it is!
We made it to the airport just fine and caught the earlier flight. She was so sore from the bone marrows that she could hardly walk through the
"It's from the bone marrows, Mom. It's not the cancer in my legs." Oh, she knows too much! I know she's trying to protect ME! I was pulling the suitcases and wondering how to get one of those cars that zip people around the airport (She's too big to carry.) but Christi doesn't LOOK sick. I can imagine what the driver would tell me!
On the plane after explaining the MIBG scan to her she freaked out and declared, "It's in my head?!" After trying to explain where it is now, I wasn’t doing a good enough job I guess. She insisted I answer the question, "Is it better, worse or the same." (Well now I know how our oncologists feel. Better, worse or the same in comparison to WHAT? Your Nov., Sept. or August scan?? How do you explain that to an 8 year old??!!) I was giving details of where it was now, but that wasn't satisfying her. I finally gave her an answer which pleased her. "About the same as your summer scan." When a more realistic answer would have been: One heck of a lot worse than your scan six weeks ago which just showed one spot now it's all over: skull, shoulders, ribs, sternum, pelvis, legs, knee like it was this summer. UGH!
Shayne of course is also heartbroken over the new disease. He was reading to Shayla when we came home. Christi and Shayla were so happy to see each other they hugged then Christi joined Shayla playing on the floor while the tears rolled out of Shayne's eyes. Sadly, the arsenal in the war chest is looking really thin. I like to think that we're down (again) but we're not out. Time will tell. I pray this new trial will be our answer, even if highly doubtful.
Upon our return from
I was very worried and couldn’t sleep that first night home as I thought she’d have too much disease that they wouldn’t take her on the new trial, but the wonderful Dr. Maris called us Friday to go over the testing results and to inform us that the study will continue as planned. (Whew!)
Dr. Maris said that she has more disease; it’s definitely worse. The new spots include her: skull, arms, legs, pelvis and the rib is still positive, but that shouldn’t be a surprise as radiation takes a while to work. The irino/temador stopped doing whatever it was doing; it’s now a burnt bridge we won’t visit again. Her CT was normal, urine markers- normal, HIV and Hep B (required for new trial) negative. Shayne asked if she has too much disease for the trial now and without missing a beat Dr. Maris responded, “Absolutely not!” He went on to say that we’re not getting her in the trial as desired with minimal disease, but she remains a very good candidate. And with the spots on the MIBG scan it will be easier to determine if we do two or four cycles of this new study. He said that the plan is to do two treatments and then to test/scan and see if it’s doing anything or not.
In regards to the Phase II trial so far three children have been enrolled and are done with one round so far. Nothing unexpected has happened so far. Of the Phase I patients the only ones who suffered allergic reactions were only those who had not had antibody treatment before. (Christi did have this at MSKCC in NYC. Good!) Dr. Maris also explained that for whatever “twist of fate” he will be the doctor on the floor the week Christi is scheduled for her treatment. “Lucky us!” we said! He is a gem!
Christi is able to receive cards. She will be admitted from at least Jan. 9th to the 13th, possibly longer. Then she’ll be discharged and we’ll (hopefully) check into the Ronald House until (if all goes well) we’ll fly home Tuesday night, Jan. 17th and be back in school on Wednesday. Her hospital address will be:
Christine S. Thomas, Inpatient
So last night’s New Year’s eve went off without a hitch. We took a pizza and the girls over to Grandma Donna’s for their annual sleepover and then came back to our home where Shayne made an awesome meal for our good friend (and Christi’s fourth grade teacher) Caroline and I. We are really down about the recent progression of Christi’s cancer, yet somehow we will mutter through. I’ll feel better once we’re back in
Thanks for checking in! Here’s wishing you and yours a most joyous 2006! God bless you!
PS: Thanks to Grandma Nee Nee (Shayne’s Mom) for taking such good care of Shayla while I was away.
Christi's Joke: Said to me while on the airplane flying home during rough turbulence which made us hold our soda pop cans down. (Her American Girl quiz book was in the seat pocket in front of her little airplane tray.) “Mom, if we spill our pop, then my quiz book will really be a ‘pop quiz’ book.” Hee hee!
Shayla’s Funny: The look on Shayla’s face when she tried a bite of the pumpkin pie I made and forgot to add the sugar! So funny!
What's Next: Back to school for a week! Yipee! That will make all of us feel better! January 9th this new trial is to begin for Christi at CHOP. I will be staying with her. She should be inpatient for about four days then discharged for the weekend to the Ronald House (Hopefully, they’ll have a room for us!). She has a clinic visit on Tuesday, Jan. 17th for labs, exam, etc and if all is well we shall fly back home that night and go back to school Wednesday morning.
For Eric “Webby” and Alicia, in loving memory of Dutch
There is a bridge connecting Heaven and Earth.
When a beloved pet dies, the pet goes to this place.
There is only one thing missing,
So each day they run and play until the day comes
You have been seen and when you and your special friend meet,
Then you cross the
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Shayne & Angela Thomas: firstname.lastname@example.org