Meeting with Maris, etc.

Many text messages were sent to Shayne during Christi's hour long (She's grown!) MIBG scan. My (amateur) summary was overall subtle improvement; however, disease still present (skull, rib, pelvis, legs, liver). Knowing that she's endured four very harsh rounds of chemo and still came out of all of that with disease, I felt like our ship just sailed without us. I tried to think that it was "improved" yet it was heartbreaking.

The magnificent Dr. Maris took Christi right in, examined her and asked if she wanted to go to the playroom. With some fellow cancer fighting friends Christi's age for a change hanging out in the playroom, she was skipping out to socialize. I called Shayne on my cell phone and let it set on my lap so he could hear too. When a conversation begins with, "We're pleased she's feeling so well," you know you're in trouble. Dr. Maris shared that there was subtle, overall improvement; yet, disease remains. What was a dramatic response to chemo months ago has trailed off and he doesn't believe it will be beaten down any more with chemo. The CT showed improvement in all of the small lesions; however, the larger tumor remains unchanged. Errrgggh!

He recommends the Phase I experimental trial, BSO/LPAM, quite a heavy hitter, for her next treatment. (It's the trial that Shayne and I were interested in pursuing in Los Angeles about three years ago and one we always said we'd go to when/if her disease rapidly spread.) When I say a "heavy hitter" it is because there have been deaths due to this treatment, approximately 30 kids have tried this study. While not an easy decision, we agree with Dr. Maris that the current off the shelf chemos she's been attempting are doomed to fail; it's only a matter of time. It's also not a good quality of life- for any of us.

Currently, because of other trials she's participated in, she's not eligible for this treatment. (Her kidney functions are fine which is why some kiddos can't do this trial; however, she's had two MIBG treatments and that is the hang up.) Thankfully, Christi has only treated at CHOP since 2003 and Dr. Maris told us he loved us and he'll go to bat for us. Maris will be petitioning the FDA and the IRB to make a special case to at least try the nasty drugs since we know the alternative.

If approved, it'll be the hardest treatment she's ever seen during her past 3 ¾ years of continuous treatments and she will (again) need some of her precious stem cells transported back into her to save her life. I asked if some of the stem cells harvested at Sloan Kettering could be used and Dr. Maris said we could use any batch we wanted. As Shayne had pointed out to me the night before when we discussed this, Sloan doesn't test their cells and if she were doing a NANT trial, she couldn't use them she'd have to use some stored in LA or at CHOP. Since this is going to be done "off study" we'd like to use the untested cells saving the NANT qualifying cells for a trial down the road when/if needed. Shayne and I are scared and fearful and moved to tears at times, yet we feel the time is now and we must proceed.

Even though Dr. Maris later said he didn't lecture me, I believe he did. (At least I had pushed my head against the back wall and fought back tears of the possible dangers of flying back home while he went on and on about why we needed to stay in Philadelphia.) He reminded me that even though she seems fine now, in 60 minutes she can go septic. He told me if I was going home to call them with a fever and with a high fever to call 911 and get an airlift to Columbus. He said as much as I want to go home and try to let her live a normal life, I also need to understand she can end up in intensive care as a result of my decisions to return home.

We ended up with Dr. Maris telling us to really celebrate Christi's 9th birthday well and that her counts should start to come up by the middle of next week. So with the numbness and shock overcoming my body, I somehow managed to go to the waiting room to eat a sandwich before the flight, but couldn't bring myself to go talk with our dear friends from NYC who also just received horrible news about their daughter and this beast which unites us.

Soon the charming Eden was finished with her appointment and we were off to the airport.







I can't even explain what a kind gift and blessing it was to return home with them. The plane was gorgeous, the pilot so skilled and the flight incredibly smooth. Although Eden captured my heart years ago, I fell in love with her all over again!!! She reminds me soooooooo much of Christi at the tender age of six; what a riot! Christi enjoyed playing "big sister" to Eden- singing songs and coloring together. Christi thought Eden was absolutely adorable; she wanted to take her home.

After landing in Columbus, Christi wanted to stop and get her friend Sarah's birthday present for the big day on Saturday so we stopped off at Easton to do that. Days ago driving to the airport Christi told me she intends to wear her hat to Sarah's party in Findlay because she won't know the other kids there and she doesn't want to explain why she's bald. She said at school the teachers must have talked with all the kids because no one says anything, except for this cute little
kindergartener who said to her last Friday, "Why no hair?" Christi thought it was precious! (When we walked into Skylines for a late dinner last night she didn't think it was so cute when an older boy said pointing, "She's bald!" We couldn't walk past him fast enough!) On the way home she chatted about wanting to have kids, at least two and wanting to build them a tree house. This all just breaks my heart at times as I long for her to be normal and healthy. Last night Shayne and
I cuddled and marveled at this amazing child and reminded ourselves that it is truly a miracle that she responded at all. We could be in a lot worse situation. We still have hope.

Today I received a sweet email from her teacher. "There were tears in my eyes this morning....During Mrs. Bayer's reading time, Christi, Theresa, and Kaylyn sat holding hands while she read. They kept just looking at each other and smiling." This afternoon Christi passed out her birthday party invites to all of the girls in her class. Thank you so much to the Grine's for planning this special evening for Christi at a real horse stable! Given the events of yesterday, it'll really be memorable.

Today's blood counts were checked after school and it appears we'll be getting a transfusion at the hospital tomorrow. (Well, if Shayne really did get "that situation" resolved like we think he did.) Sorry to be so lengthy; I needed to get this off my chest. Have a great night!!

PS: On the way home from a rosary service, Shayne stopped by the Bowerman's home earlier this week where he found Denise timing contractions (and taking care of their Jessica without missing a beat, super mom!). Hours later, Jacob Scott arrived! Congratulations to the Bowerman's on their precious new baby boy! We send Tim and Denise and their family our very best wishes for a healthy and happy child. The baby couldn't be blessed with a better family! ENJOY and REJOICE!!