Monday night, November 24, 2003
This is the house,
For a kindergarten teacher who incorporates the great children's book, "This is the House that Jack Built" in her classroom, you can bet that tears were streaming down my face when I read the above sweet poem after enjoying the finest of meals in our new "home away from home" last week. On Thursday, in honor of "World Children's Day" the McDonald Owner and Operator Board Members of the Philadelphia Ronald McDonald House prepared a scrumptious "surf and turf" dinner!! Shayne insisted that he stay with Christi while I go back and feast upon the fine meal and I'm glad I did. It was unbelievable! I wish Christi and Shayla could have been with me as they even had RONALD McDONALD there himself - a wonderful entertainer. It was a great celebration and it was my first chance here to actually network with some other parents and wonderful, wonderful professional and valuable staff members. As Shayne has written before, this first Ronald McDonald House in the world is not home, but as close as we could ever get (and with much better nightly cooking!!!!!). We've been so richly blessed!! Thank you to the Philadelphia Ronald McDonald House for brightening our days (and nights!) with your love and support!
On Thursday, Christi's radiation level was down to "8". The MIBG scan that afternoon showed slight uptake in the bone marrow of the femurs again so it made us very, very happy that we did do the second high dose infusion even though I know it sparked controversy. Both Dr. Maris and Dr. Suzi spoke with us that afternoon and were happy about the uptake - probably indicating that the radiation is destroying those areas and that the first hit did not get it all. (But who knows?!) They both said at this point of the game they couldn't be any more pleased with how well she's doing. While her blood counts are dropping by the day, her spirit continues to soar!!!!!! (We'll also see how long that lasts. I know how miserable she is when her blood counts are low.) Because of her blood counts falling, it's recommended that we stay close to the hospital so FINALLY on Thursday Shayne and I had a chance to talk and make plans (while she was up on the table being scanned, but when else can we talk?!).
We will stay here throughout this process which should end around the first days of January. Christi will not be thrilled about missing her school Xmas program, her art teacher and her 2nd grade teacher's weddings, nor spending Thanksgiving, Xmas or New Years here, but we will simply make the best of it and all will be fine!!!! Shayne drove home after dinner Saturday night to collect little Shayla and to bring the storage containers I prepared and left in the basement in case this scenario occurred and we ended up actually being here for many weeks. (Thank you, Shayne!) That nine hour drive is simply a killer! He arrived home about 4:30 AM. Ugh! I expect them back in the next day or so.
I inquired about Christi's schooling Thursday and was told that she could only get a teacher if she were impatient. (I thought, "I know the law and I'm really not the person to mess with about this") I politely yet assertively said to the nurse, "This child is legally entitled to an education." She told me the doctor would have to okay it. So when Dr. Suzi came by I asked her if it would be okay for me to drive Christi to the hospital each day and to come up to the oncology floor so she could receive one hour of tutoring from the hospital teacher "Joan" since it's not done for outpatient children and because with Christi's blood count situation she can't be enrolled in a public school here. Brilliant and beautiful Dr. Suzi thought that was a good plan. (Let's see if it works. I tried to be Christi's substitute the other day and was told, "You're no Miss Stiffler!!" I told Christi that I've taught 2nd grade for more years than your teacher has and that I know what I'm doing, but obviously, Christi could care less about my seniority status as she refused to do any work for me that day - thankfully, the situation has improved and she's now letting me give her an occasionally assignment or two.) The hospital teacher, Joan, stopped by to get some information on Friday. I know Anne Marie, Mrs. Rombach and Miss Stiffler's teaching could never be outdone, but I hope all goes well as Christi really needs appropriate mental stimulation to keep her distracted and to keep her thriving. She started "school" today. I'll keep you sweet fans in Christi's Corner posted, but so far she said that there was only one problem - it wasn't long enough!! (That's what Christi said when I picked her up after the session - cracked me up!) We recently finished reading "Frindle" which was a hoot and now we're into "The School Story". We've also been reading and discussing a Bible Devotional each morning after breakfast which has made her ask more than once, "Are you trying to be my CCD teacher?" to which I've responded, "I could never been your CCD teacher either, I'm just being your Mom."
I have the social work intern here at Ronald checking on preschools for Shayla. I want to find one that is safe (my first priority) but then one that will allow me to pay just on the days that Shayla attends as when Christi's ANC bottoms out I don't want Shayla being exposed to germs at preschool and bringing them "home" to Christi.
Thursday's blood counts down to: Hgb. 10.5, white 3.2, platelets 83 (Wow! What a drop!) with an ANC of 2,336. Today (Monday) her blood count levels were again down to: hbg. 9.7, white 2.5, platelets 46 (ouch!) with an ANC of 2,125. Still above transfusion levels, but now very low and still dropping like bombs! I'm a bit surprised they are falling even sooner than I thought, but we know where this is going and it's not going to get better for weeks. Shayne's deciding when he's going to schedule time to go donate blood and platelets for her as she should start needing transfusions later this week.
Friday her radiation level was down to 6.7 so f-i-n-a-l-l-y we were discharged in the afternoon. It was a gorgeous day and we were exhausted. Once back at Ronald the three of us sat out on the beautiful front porch all reading and writing in the afternoon sun. Christi didn't like how a recent chapter book ended so she wrote a new chapter to end the story. Before it was time to go in, she stood in front of us and read the new ending chapter she created from her notebook to Shayne and I. We both had tears running down our faces. It was absolutely beautiful as she read and read and read. I'm used to everyone always telling me how incredibly intelligent she is, but just then it hit me as she said that she kept the setting and the characters the same to keep the author's tone. (Where did she learn this?) This little girl is as smart as a whip, it hardly seems fair that she has to fight for her life like she done for the past 14 1/2 months. I know with the gift of intelligence God has given her she can do great things here on earth!!! I hope and pray it's in His plan.
Medication every four hours around the clock doesn't provide for great nights of sleep; however, all being back together at Ronald has really, really helped even though this medication thing is really getting old. At the hospital, I couldn't have asked for any better care; however, by Friday, I was itching to get out of the hospital and couldn't get discharged soon enough! My limit had been maxed! Those nurses and doctors are wonderful folks working tirelessly for their patients!
Christi and I received beautiful Thanksgiving pictures from my kindergarten students with a sweet note from my sub. It was the nicest thing. Christi and I went through each and every page and she had me tell about how each student's work had improved from the beginning of the school year. She seemed surprised that I could remember, but I tried to explain how rapid growth and development occurs at this grade level and that big changes are easy to identify. She giggled over the children who drew a turkey with four legs, or when she couldn't interpret something but I knew what it was. I've been so very, very busy - yet I still wonder how my students are doing back at school.
Saturday was another beautiful day. The Ronald house let us borrow a stroller and gave us free tickets to the Philadelphia Zoo (America's first zoo) so off we went. It's only about a ten minute drive. Going to the zoo was Christi's idea (Shayne and I were hoping for the Cornell / Penn game) but she wanted to sketch the animals and she did - animal, after animal, after animal! She continues to be the art kid! I also caught up on the laundry on Saturday. The coin-operated washer and dryers here at Ronald are anything but close to our room, but I'm thankful not to have to go find a laundry mat somewhere! What a blessing!!! And I do need the exercise!!!
Christi has started back into her piano playing that was discarded in February of last year. There's a piano here at the house in addition to one the hospital. When she finished "Away in a Manger" on Saturday morning, the room - filled with beautiful Sorority Girls from Villinova, broke into applause. Oh, Christi loved that! With tears in my eyes I had told them how much Christi enjoyed them coming to play with her while I was home with Shayla and she was here with Shayne. I didn't mean to get teary; I just wanted them to know how much their work means to these families staying here. The girls also filled the pop tab collection box here with tabs they had collected for the house from all over their campus. While the house in NYC didn't participate in this Philadelphia Ronald McDonald House does - so keep saving those tabs to support the Ronald McDonald Houses. Now I'm positive; it really does help! Thank you pop top savers!!
Sunday morning Christi and I walked to church. It is just 1 1/2 blocks away from Ronald. Thanks be to God! The neighborhood is not the best and the weather will soon be turning very cold so I couldn't be any happier about the close location of our new church! Christi was enthralled by the beautiful pipe organ in the balcony. There are many mass times and Christi was happy to make the selection of the time we would attend - 11:30 AM, after a game of "Go Fish" and her shower. There are so many things in her little life that she can't control (she has to take her medications, get shots, get IVs, etc. all when other people "wearing big shoes" say) so I like to let her make choices and plan our day even if she doesn't always follow her own schedule.
From Angel Peggy (Christi's Chemo Angel) I received a Christi's Creation - her flower card for NCCF!!!!!!!!!! It's awesome!!! It was the first I ever saw one - except for on the computer. I was surprised how large it was and what nice quality! It's the real deal! Shayne had thought Christi created a notepad so he asked, "When did she make a Christmas card?" I said, "It's not a Christmas card, it's a plain note card for multipurpose, but it can be a Christmas card too." "Oh." he replied. (men. smile.) Christi looked at it and said, "That's a caterpillar." I wondered exactly what that was at the bottom, under the large flower, and yes indeed she's right - it is a caterpillar! (Smile) I'm so happy she could use her talents to help raise money for childhood cancer research - something she and so many other children desperately need to save them from the beast of childhood cancer. Visit Christi's home page and check out the card link (in the blue box) to order yours in time for the holidays!
This morning Christi and I took the Ronald van shuttle to CHOP. How nice to have this service available now that our vehicle is in Ohio! THANK YOU, RONALD!! The sweet volunteer driver listened to Christi telling him about sketching at the zoo. Turns out his daughter used to sketch all the time too!! After the hospital stuff this afternoon, Christi wanted to walk through campus back to Ronald so we did. Upon our arrival there was a package waiting for Christi from Mark, the morning's volunteer van driver. She's now sketching and coloring with the new drawing pads and pencils he left for her. How totally sweet! We've been so blessed! To the hospital this morning we took with us a very large box full of great books from my friend, Robin and from Creative Learning Press. They were donated to the hospital so Christi and Alex (Robin is also friends with Alex's grandma - small, small world!!!!!!!) presented them to a sweet Child Life Specialist this morning so that lots of cancer kids and have some cool books to help pass the time.
I'd like to express our sincerest Thomas Team thanks to Aunt Marty & Jeff, Becky and the boys, Doug and Caroline, Grandma Nee Nee and Betty Jane for all of their help with Shayla's care while Shayne and I were here with Christi. It's amazing that Shayla can literally talk from the moment her feet hit the floor in the morning until she talks herself to sleep, isn't it?! I recently asked her, "Shayla, are you talking just to talk or do you have something meaningful to contribute?" She proceeded on a lengthy talk telling me how sometimes she just talks out loud whatever she is thinking in her brain. (Definitely, she does! I tried to listen empathetically, but it was hilarious! She's a hoot!) But boy, how I miss my little chatterbox right now!!!!! I shall see her very soon! Here's wishing ya safe travels once again, Shayne, on your adventure back.
Thanks for checking in on the "Christi Connection". THANKS FOR YOUR LOVE, FRIENDSHIP, PRAYERS, HELP AND SUPPORT!!!!! We've been richly blessed by your goodness and will forever be grateful!!
Christi's Joke: What has two legs and goes crunch, crunch, crunch? Christi eating cereal!
What's Next?: Back to the hospital again tomorrow. Complete physical and the ever important MIBG scan. Blood counts will be checked again the day after Thanksgiving - Friday, November 27, 2003 and should continue to get lower and lower and lower. She's scheduled to have her stem cells transplanted back into her December 2nd which will hopefully bring her blood counts back up over time. The dreaded daily shots will also start then. No tests or scans are scheduled until her blood counts recover - mid to late December. Official testing is scheduled to begin on December 30th. Test results will determine the next course of treatment.
Seeing Eye Dog by Christi
I had a funny job one night when Daddy went home to bring Shayla back to Philadelphia. I was hungry. It was bedtime. I told Mommy. She said, "You'll have to help me because I just took my contacts out and Daddy's not back with my glasses yet." I pretended to be Mommy's Seeing Eye Dog down to the kitchen. I liked it. I won't need a seeing eye dog if I lose my sight. I will use my other senses to help me and everything.
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