Friday, December 6, 2002
Hello! I hope this finds you well and I can't possibly thank you enough for checking on Christi's progress and for keeping her in your prayers during this challenging test. You're amazing! God bless you!! Please don't lose the faith. We really need you! Christi LOVES checking her web site to see how many visitors she's had. She knows that each one is like a little hug and she beams knowing that she's had over 18,000 hugs from the computer. We're doing fine and are prepared and waiting for Monday's admittance back to the hospital. We get really tense as the time approaches. We just wish they'd call a day early and say, "Come now! Let's get the show on the road!" This waiting is very trying. We're concerned about everything that could go wrong and how much fear Christi will have. We're also extremely disappointed that nurse, Lisa Z., is working in a different capacity and will not be able to be Christi's nurse. We hope and pray that they will have the SAME nurse scheduled for Christi each day. The consistency issue is a huge one for us and it's really been disappointing. I feel my complaints have gone no where.
Today we received a call that again this time Children's Hospital Los Angeles is detecting about 10% of cancerous cells remaining in her bone marrow. (darn! darn! darn!) If we would wait another cycle she would not have any healthy stem cells left to freeze and to start her new life so they have to harvest despite the fact the cancer remains. (ugh!) Soooooooooo, this is is where the purging process should kick in and remove more. It's hopefully able to detect 1 cell out of 100,000.) While we are extremely disappointed, it's HARVEST TIME anyway!! We'll admit at 6:30 AM on Monday. Shayla will be at my Mom and Joe's. (Thanks, you guys!!) Christi will go into the operating room at 7:00 AM to have the catheter placed in her hip/thigh and then we'll back in our "home away from home" up on J5 where she'll do the harvest process for about 6 hours in the clinic area. Because of so many cells being damaged, it'll probably now take three days of repeating this to get enough healthy cells to freeze for her spring transplant. As soon as her blood counts recover, they'll start her fourth round of chemotherapy. We're hoping to be out of there on the 17th of December. While we've grown very fond of many of the staff members, we still have a love-hate relationship with the hospital. We all do so much better when we're at home. Home is best; yet we need the hospital too.
We've enjoyed our time at home immensely. As a couple who used to enjoy traveling as much as possible, I can't even begin to tell you how wonderful home feels!! Our dear friends delivered Happy Anniversary wishes to us by standing in our front yard on an absolute fridge and blustery November 30th afternoon. It seemed to take us forever to get our hats and coats on and get out to shout hellos, but they continued to politely stand there with huge smiles on their faces despite the fact they were freezing. I know they think they "got us" and YES they definitely did! What a joyous surprise! Unbelievable kindness!! Thank you dear friends!! It's been a week and yet I still reflect on them out there smiling in the cold!
On Thanksgiving afternoon we decorated for Christmas which this year meant only putting up my Dickens Village and the nativity set. The girls had a ball and Shayne and I remained sane. (Well, maybe) This year I decided to let them play with the nativity set. This was suggested last year at a workshop I went to at our church and it sounded crazy a year ago. "What! They could break it!" I remember thinking. My how a crisis brings change. As I was unpacking the gift I asked my Mom to get for me after we got married, I thought, "Why not? If the shepherd boy loses his head, I'll glue it back on and it may make it even more special in years to come." The girls loved playing with it and enjoyed adding other animals to the scene because "they would have wanted to see baby Jesus too!"
On Monday, the 2nd of December we took Christi to the hospital for her MRI. They pulled me aside and said that she seemed very mature and did we think she could hold perfectly still for about an hour. I jumped at the idea of not sedating her. We explained the importance of not moving even a teeny tiny little bit and she did it. Amazing! It's such a small space in the tunnel they slide her bed into and a terribly loud booming sound is made over and over and over that even with the ear plugs it really hurts your ears. They told me if I removed all of my jewelry and anything metal I could go in with her so I did. (Of course I joked something like - it's a good thing I didn't wear an underwire bra. ha ha! And Shayne's still laughing that I wanted her to be able to wear a Walkman - duh! It's a magnetic field! Oops! See, I'm learning a lot too!) A wonderful nurse, Sally, leaned way in with me and she held and massaged Christi's right ankle and foot while I leaned way in and did the same with her left foot the entire time to keep her calm. Sally's back had to be hurting her too and it wasn't even her child yet she hung in there with me for an hour! Christi was strapped down and didn't really mind - except for the "seat belt" restraining her head bothered her a great deal. I am so thankful for Sally. I never would have made it without her. She was the angel of the day. At one point we saw big tears streaming down Christi's face, but other than that she was fine and would occasionally smile at something we shouted to her. I know she was frightened. What a brave little girl!
During the MRI, Shayne went to the research library and wonderful Lisa was there to help him get the articles to the abstracts he's located at home on the Internet. (You're wonderful, Lisa!) I held Christi's foot and prayed and thought about how wonderful it would be if they told us her tumor was gone and that they couldn't explain medically what had happened and that it was a miracle. I also reflected back to our first MRI on September 11th when she had to be sedated and we had to leave the room. We stepped outside in the sun, sat on a bench, held each other and cried our eyes out knowing it was cancer, but not yet knowing how far it had spread. Then I remember later being told that it had metastasized (spread well beyond her tumor) and I thought that was the most vulgar word I'd ever heard. It was much easier this time knowing what we are fighting against and having educated myself by reading almost every day. Shayne locates fabulous articles and research studies and I read his highlighting and we discuss them when time permits.
After the MRI, I took Christi to the cafeteria since she wasn't permitted to eat hours before her MRI and Shayne went to meet with Dr. Mandy (Christi's oncologist). We didn't know what kind of report we were going to get and didn't want her little ears to hear bad news. He also signed the consent to do the purging in Los Angeles. They should be able to located 1 out of 100,000 cancerous cells and make sure they're removed before being put back in her during her spring transplant. Dr. Mandy told Shayne that everything "looks great". Of course, being the advocate for Christi, Shayne had to push for more and said, "I want to see the pictures." So she took him to a computer and pulled up the images and explained a bit more. She said that there has been a "significant reduction". Shayne thought it looked like 50% when on the way home Christi asked about her tumor and then asked, "What percent is gone?" (Boy she doesn't miss a beat!) He said it still looks like 4-5 inches remain all down her spine, but the part that stuck out around her heart looks like it's really pulled back in. Dr. Mandy pointed out that it looks like a lot of mature (dead) cells. Yipee! Praise the Lord! I'm thrilled!! This shows that the induction phase has been effective so far. We know this bad boy has the ability to change itself (like a weed) and no longer be affected by the chemo, but so far so good. (Can you believe these tumors actually form their own blood vessels and their mission is to move in, grow and take over the body - ugh!) So anyway, your prayers are working and we say thanks to you and thanks to God for the shrinkage!!!! It may be a small step, but it's a step forward and we're celebrating!! Gooooo,Christi! And thank you for working overtime in the prayer department!!!!! We're extremely disappointed that we are harvesting with cancer in the cells yet are hopeful that they will be able to be purged out in Los Angeles next week. (Please pray. I don't want the poor thing to have to go through this only to have it put right back in her in the spring. I'm now wondering if we should have selected the newer protocol even though all three children on it last year died. The one we're on and are modifying had a 35% chance. It seemed better to go with 35% than 0%; however, this newer one is stronger and harsher with hopes of killing the beast hard and strong since that is the nature of this dragon is to not respond and / or come back. This is so hard! I just pray and hope that we're doing the right thing for our precious little one. I love her so much!
My Godmother and Shayla's Godmother, wonderful Aunt Marty, watched Shayla for us on Monday and said she was "perfect". Aunt Marty always has a way of making me feel good! She had warm, wonderful chili waiting for us and she made a real gingerbread house with Shayla. We drove home from Marion in a horrible snow storm. Shayne never went over 35 mph because of the dangerous road conditions. Shayla, who is very insistent, wanted her foot rubbed and only by Daddy. I don't know how he did it, but he drove with one hand, rubbed Shayla's foot with his arm stretched to the back and told the girls stories of his days in snowy weather when he was a boy because I was doing big zzzzzzzzzs all the way from Marion. (Not that snow stories of Tim and Irv aren't exciting, but....................) We were so happy to finally be home after that terrible drive and to be back home with absolutely wonderful news! P.T.L.!
We arrived home late and saw that Shayne's boss, Larry Wagner, had set up a kids' Christmas tree in the living room. Oh how I wish Larry could have seen the girls and their excitement. They were literally jumping up and down and shouting, "This is the best Christmas ever!" They love being able to touch the pretty children's decorations on the tree since they call the other tree "Mommy tree" because I don't permit them to touch it. It's too gorgeous!! Our family tradition has been to get a live tree with Shayne's dad after Thanksgiving, but this year Christi is not permitted to be around a live tree. So this surprise was awesome for them. I'll never forget their little, joyous faces that night! And we wish we could have seen Lee in the back of a cold, pitch-black truck and Larry trying to get the tree in the house! (smile!) You guys are awesome! Thanks!!
We did come home to bad news that Buttercup was seriously ill. She had been coughing around for a while so Shayne's Mom took her to the Vet. Dr. Zinn said it was serious and not something this family needs right now. Two days later it was determined to be a serious ear infection. Poor Buttercup!! But at least it's better news than we thought! Come on, kitty! We need you for pet therapy (smile).
On Wednesday, December 4th, we had about 3 1/2 hours to wait in between appointments. Christi's blood counts were pretty good so we thought we'd take her to one of her favorite places for a few hours - COSI. What a joy! She had a ball playing with those fabulous Explorers - Harriot and Elizabeth, and attended the planetarium show and an optical illusions exhibit. She also got to visit Santa. That was a big tear jerker for me. For the first time she wasn't scared. She walked right up to him and sat on his lap. He liked that she was wearing a hat that matched his. She talked with him for quite a while. I asked her what she told him she wanted. She refused to tell me and kept saying she could not tell me because if she told her wish it would not come true. I asked our friends from the COSI staff to find out what she asked for so that we could make it come true. They came back and said, "You have the sweetest little girl." They said that the only thing Christi wanted was "health and happiness for everyone." I did my best not to cry in front of them, but thought that was most precious.
Her bone marrow test that afternoon went fine. While she was sedated, I ran up to J5 to check on Delaney (She's really having serious eye problems with all of the radiation to her head. Her vision went from 20/20 to 20/80. Please pray for our six year old friend, Laney.) I also wanted to see how Andy was doing since I knew that he was also in for chemo this week. He's so cute. He will go in for his bone marrow transplant December 30th. Please remember Andy in your prayers. He has Neuroblastoma like Christi. His parents are so sweet! Even though we didn't want to get involved in other cases of cancer knowing how hard it would be to get attached, we've found that we've definitely formed friendships in our "home away from home" and we think about these kids all the time.
Christi's heart and hearing tests showed no damage. We know that the heart damage is a late occurring effect, but hearing damage should have occurred by now if any was to occur. She's fine in the hearing department! In fact, at one point Sally the Ph.D. doing the tests went back and repeated a tone because earlier Christi hesitated. Christi, wearing what she calls "ear muffs" said, "You already did that pitch." Sally looked over at me and said, "No one's EVER said that." And between you and I, it looks like Sally's done more than a few of these tests over the years. (smile) Christi has been memorizing most of her Christmas songs that she's learned so I think she has a knack for listening to tones perhaps.
On Wednesday we also ran into one of our favorite oncologists. We told him the wonderful news about the shrinkage of her tumor. He reminded us that it may not shrink anymore and again informed us that this cancer has the ability to no longer respond any more even though she's to have two more rounds of chemo before her February surgery. I also spent a lot of time on some recent Neuroblastoma victim's web sites and saw that those precious angels were also doing fabulous at this time and supposedly defying all odds at this point too. In the seven stories that I followed five of them reached remission before relapsing and of course never coming back. My heart breaks for those families grieving. I've contacted a few of them and appreciate their help. Shayne spent about an hour speaking with sweet John Russell's mother this week. She's a gem - a rare and precious find. It appears to Shayne and I that if you actually live after getting this ugly beast, it's an accident. If you'd like to send John Russell's family a message of condolence, his web page is http://www.caringbridge.org/page/johnrussell
Mr. Kimmel, an angel from Fostoria that we've never met, is running his last marathon in Honolulu with Christi as his partner next week. Christi thought it was very nice of him and colored him a picture. I mailed it and he emailed back saying that he will carry it in his pocket during his 26 mile run. It just brings tears to my eyes discovering how complete strangers are supporting Christi throughout this horrendous ordeal. Best wishes, Gene!!
I certainly haven't lost faith. It's perhaps grown stronger if anything. And what's really interesting is that I've had more than one stranger email me and say that they've never prayed before in their life, but for whatever reason felt compelled to do so after being told to go to her website. (Thanks, Eric!) And thanks to all of you who are praying for her during these tough times! God bless you! Take care!!
I mailed to Eric a few more pre-diagnosis pictures and they should be on the site soon if you'd like to check them out sometime. He's also connected the NWOEA web site which has been a huge part of my life for the past sixteen years.
I'd better go. Shayla is "helping" me clean the house and she just took off upstairs with an entire package of baby wipes! Oh my!
Love to you all,
Christi's Recent Joke: How does a cow cry? Moo hoo! Moo hoo!
Home | Blog | Journal | Links | Christi's Art 1 2 3
Shayne & Angela Thomas: email@example.com