Thursday afternoon, November 6, 2003
"Now glory be to God, who by His mighty power at work within us is able to do far more than we would ever dare to ask or even dream of...infinitely beyond our highest
prayers, desires, thoughts, or hopes."
Subject: Thanks be to God: Christi sets an "un"official world record!!!
Good afternoon dear friends, family and supports! We're HOME!!! Home in Ohio!!! Can ya believe it?! We are happily surprised and shocked! Thank you for all of the prayers that have been lifting Christi up!! While we do not know what is happening with the cancer in her bone marrow (and we won't know anything for six weeks yet) we were thrilled yesterday morning when radiation safety came to scan her and she was, just 18 hours after the high dose infusion of 131 MIBG, emitting a safe level of radiation. Unbelievable! Absolutely unbelievable!! Praise the Lord! I never saw so many heads shake and so many folks break out in huge smiles as yesterday morning!! The magic number to get released out into the public is 7. In the morning her level was down from the mid-forties on Tuesday afternoon to just 6.7, yipeee!! What a thrill!! Of course no one could believe it and it took 12 hours to actually get discharged from that point but after a quick trip back to Ronald to pack and to clean our room for the next family to move into we're home and don't have to return to Philadelphia until Tuesday! Yipeee!!! Four days at home!! Home is best and we're going to get Shayla very soon!! Shayne drove nine hours through the night while Christi and I dozed and we arrived home about 6:00 AM. I just woke up so I immediately wanted to share the good news and to make sure you didn't worry about us any more. Now our prayer request is that this treatment will put her into a NED (no evidence of disease) state. That too is against all odds, but we're praying hard and appreciate your help!!
Christi is doing fabulous now. She had a lot of vomiting and diarrhea yesterday (Wednesday), but she is okay and she wants to go to school tomorrow. (She wanted to go today.) I'm totally beat and they didn't inject me with anything! Wild! We're waking her up every four hours to take some medication which is to help protect her thyroid glands. In about one month is when she should be really, really sick with no blood counts due to the radiation. While it is safe for us to be around her, we've asked Mom to remain caring for Shayla for another day yet just to be super safe with our precious little one. While I'm confident it's fine to be around Christi, I'm too exhausted to attempt to deal with active, demanding little Shayla right now - but oh how I've missed her!
When asking the awesome Dr. Suzy what was going on with Christi processing out the radiation so quickly she said that she believes Christi set an "unofficial world's record" with having her radiation level drop so rapidly. (Over 100 children in the world have undergone a single high dose MIBG infusion like this, but in two weeks when we go back Christi will have ventured into the unknown by attempting a second on in rapid succession followed by a rescue of her own stem cells. Thinking that more radiation in a short time period is superior, we've signed on. We'll see.) Dr. Suzy said that most of the children get out of the hospital on Friday or Saturday which is what we were planning on - NOT WEDNESDAY MORNING!!! (Go, Christi!) Dr. Suzy also said she wasn't really surprised because the MIBG scan that she did yesterday afternoon post treatment didn't show anything new - again no big bulky tumors to suck in and hold the radiation, "just" (ha!) slight bone marrow disease showing uptake in both femurs. (The post treatment scan was scheduled for Friday. And nuclear medicine couldn't believe our nurse yesterday when she called them repeatedly to say get this child in to be scanned today, the parents want to drive back to Ohio today. And our nurses at CHOP were tremendous!!!!!!! Skilled, professional, efficient - everything we love in nurses!!!! CHOP is an incredible place!! It far surpassed our expectations in every area.) Shayne and I will now officially quit playing "Amateur Radiologist" as we declared that she was jam packed solid with cancer as her scan was all lit up and totally white late yesterday afternoon. Ah, back to our day jobs - Cancer Parents! We'll leave the scan interpretations up to the real gurus now! Praise the Lord to have seen no new spots!!!!
On Tuesday afternoon, six individuals stood outside of her room when she remained inside alone during the infusion. It was intense!! They were all standing there in their gowns, radiation monitor clips, gloves and booty covers watching monitors and computer screens - both in and out of her MIBG room. One of the doctors said to me, "We've had so many meetings about this little girl's treatment. We've never done this before as the first two were done in San F." All eyes were on her as for two hours she watched about ten episodes of Sponge Bob on a DVD the hospital let her borrow. I won't say she didn't look at us with tears streaming down her face, but without a doubt, Christi's the bravest kid I know. While I did many "I love you's!" in sign language through the door and lots of big ways, okays and thumbs-ups, it was absolutely sickening and gut wrenching to me what we were allowing to get pumped into her veins. It was definitely the most difficult day I've ever had except for those few days with the initial diagnosis and again this spring when they told us she wouldn't survive. It was just very hard emotionally and mentally. Radiation safety had told us (I'm probably a bit off with the numbers here, but not by much) that say a chest xray subjects you to about 100 not rays, but "gamasomethingmawhatchamacallits". Well, what was injected into Christi was about 300,000 "gamasomethingmawatchmacallits"!!!!!!!!! Eoowwwzza!! Ouch! Mentally I was toast the entire day and really wondering if we'd made the right decision or not by subjecting her to all of this and wondering if she survives what the long term effects will be as she's total ventured into unknown territory as one doctor said to us. But on another note a doctor said that Christi "is in a league of her own" and we'll just have to wait and see what happens since she's following no normal course with this disease.
Christi had a very, very difficult time after she had the cathedar placed Tuesday morning. A nurse came out to say that one of us could go into recovery and that Christi was doing fine, but had "quiet a little vocabulary for being six". Oh, I knew she didn't know any bad words, but I could only imagine what she was telling the folks in recovery about the Foley. And it appears she let everyone know her thoughts about it! Upon arriving at her bed she was propped up with tears streaming down her cheeks and she said, "Mommy, I'm trying to explain it to them, but they just don't understand!! I have to go to the bathroom and they won't let me." Christi didn't give up for nearly an hour of trying to rationalize with them why she could just go to the bathroom and not get any radiation anyway because she would be so careful, but finally came around and agreed not to take it out herself as she threatened. It is hard to believe she's only six the way she communicates.
Dr. Maris stopped by the night of the infusion and told me that she is an ideal candidate for this - only having minimal disease. He said he was cautiously optimistic. I joked something like, "That's good because our hopes have been dashed one too many times and we're not optimistic at all." He said that that was probably best, but for this being a Phase One experimental study, they're using Phase II proven agents that have worked effectively in some children. (The single high dose 131 MIBG) and that he believes this double is better. We're praying that's true!!
Unfortunately, Christi port is officially "toast". Sadly, the technician over at Hospital of University of Penn (HUP) didn't flush her tube with heparin after her PET scan on Monday. (And the PET scan was also negative for cancer - praise the Lord, but after all of the hubabaloo with her port due to the error Shayne had said many times, but never lost his cool, "That PET scan better be positive after all of this torture she's now endured as a result!") Every doctor and nurse practitioner we ran into at CHOP said how embarrassed and sorry they were. Christi really had to go through a lot of additional suffering Monday night and Tuesday morning as a result of trying to get the port to work that wasn't flushed properly. At one point we weren't allowed in a procedure room, but we could hear her yelling and crying and pleading with the doctors and nurses as yet again and again and again they tried to fix the problem, but were not successful. One nurse said that she's sent an email out requesting that we not be charged for the new port she's scheduled to get inserted on November 17th since it was HUP's fault. At least the clot is in her port, not in her so it can remain until her surgery on the 17th to get a new one. They'll do it at the same time they put in her new Foley to repeat this process.
A most special thank you to a very dear Internet friend who mailed Christi a handmade blanket that she stitched in love for her little baby that sadly was never able to use it. She prayed that some day God will find for her another special child that would need this blanket here on earth. She picked Christi as that child and Christi loved snuggling under her soft and fluffy yellow and blue blankie. And I'm confident that the sweet Angel baby it was really meant for was hovering over Christi providing special comfort during her isolation. When it was finally time to be discharged, Christi said, "Can I just have them scan the blanket and maybe it's okay to take home with us?" But as she walked it over to one of the gentleman's scanners the red dial immediately took off to the right indicated that it had been contaminated and was radioactive. Sadly, Christi gave it back to be destroyed as radioactive waste. (It was so wild throwing away her jammies, food trays, sheets, etc.) At one point Christi said, "They recycle that stuff, right?" "Ah, something, they do something with it, honey." was my response as to not upset one who was already upset enough chained to her hospital bed with the Foley.
Thanks to Grandma Nee Nee and Grandma Nonee for caring for Shayla and our home. (Joan, I nearly wiped out on the hard wood floor it's so clean and shiny! Thank you!) Thanks to Shayla's awesome preschool teacher who emailed daily pics of Shayla so I could see for myself that she was doing fine. (Marie, I once went back to Ronald and coming back to the hospital Shayne said, "Any emails?" I said, "About 50, but I only opened three - Mrs. Coleman sent three pics of Shayla today and she looked great in all three pics.") While we don't know what's going on inside Christi's body we do know that the time at home will help all of us do better and we're so thankful to be in Ohio instead of Philadelphia for the next few days! Thank you, Lord!!!!!
Our deepest Thomas Team sympathies to Christi's great art teacher and my dear friend on the loss of her sweet father to cancer yesterday. This wonderful man even sent Shayne a new shirt in New York City after we had been wearing the same clothes week after week after week. I know he's in a better place and with his precious daughter now, but my heart absolutely breaks for Susan and her family. I know how difficult it is to lose a tremendous father. May God wrap His loving arms around Sue and her family and give them strength and comfort. We love you, Susan and all!
Happy Birthday to the other "World's Greatest Sister" today as Shayne's sis (and Aunt V) turns ?????? hmmmmm today! We love you!
With love, thanks and gratitude,
Christi wants to share a joke now. She will type it herself. Here goes: Knock, knock. (Who's there?) snbopepop (Snboopepop who?) Knock, knock. (Who's there?) lalalalalolo (lalalalalolo who?) knock knock (who's there?) grgrhahahoo (grgrhahahoo who?) knock knock (who'there) orange (orange who?) Orange you glad I actually said a real word!!
Christi's Joke: (It was great to meet Alex Scott again this week! Be sure to pick up a copy of Good Housekeeping Magazine's December issue to read about this very special girl and brave neuroblastoma fighter who treats at CHOP!!) Knock, knock. (Who's there?) Alex (Alex who?) I'll explain later just let me in!! (We love you Alex Scott!!!)
What's next? Shayne and I are exhausted beyond belief. I don't know if I've ever been so tired in all of my life. Tomorrow I will send Christi to school. She wanted to go today, but I thought that was pushing the envelope. I'll get the medicine into her every four hours. On Monday, we'll load up again to go back to Philly where she'll have tests and scans. Her next (second and final) high dose MIBG treatment will begin with an admission on Monday, November 17th and the infusion again the next day. I hope I can deal with that better emotionally. This week has been hell for Shayne and I. I honestly don't know how he ever stayed awake to drive us home late last night. Every time I woke up I saw heavy fog and fast moving semis. Thank you Lord for safe travels and for this great blessing to be at home with our family for the next few days! We've been richly blessed!
Our prayer request remains that this Phase One MIBG experimental treatment will get Christi into a NED state and will not be too toxic.
Reminder: If you'd like to purchase a box of Christi's Flower note cards to raise money for the National Childhood Cancer Foundation designated for pediatric cancer research, please visit Christi's home page or click here to go right to the ordering page. A sweet, sweet staff member there told me that nearly 100 boxes of Christi's cards have been sold. (Unbelievable! I told Christi and she said, "That's 1,000 cards!!!") Thank you sweet friends for helping to raise money for childhood cancer research to help save these precious, young lives that have so very much to offer the world. THANK YOU!!!!! Dr. Maris told me on Tuesday, that Christi is participating in a trial that just two years ago was not even available! Thank you for supporting childhood cancer research - Christi's still here and fighting so strong as a result of it!!! We've been blessed!!
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Shayne & Angela Thomas: email@example.com