Journal Entry


Monday, December 29, 2003

"Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul." Psalms 143:8

Greetings to the Christi Crew! Thanks for hanging with us tight and for praying so hard! We can feel your wonderful prayers and well wishes even though we're all four back in Philadelphia.

Thomas Team thanks to Doug Nichols at the hospital in Tiffin. He arranged for Christi to receive her needed platelet transfusion in Tiffin on Saturday. Blood counts on Friday were: white 1.9, hgb. 10.3, platelets 12 (ouch!) with an ANC of 1200. Since we spent four of our seven days at home in hospitals for various things so it was a tremendous blessing to hear this news that Doug had worked out things to get her transfused in Tiffin - saving us a long trip to Columbus and give us another precious day at home.

The four Mercy nurses we worked with at the hospital were very professional, efficient, kind and compassionate. And even the nurse whose arm I pulled on to get the needle away from a terrified Christi handled my, "Do it Christi's way and no one gets hurt." like a Saint. I've NEVER done that to a nurse, but I knew the consequences of not putting the needle into Christi's chest the way she says. (It would have been ugly, right Gail?!) Here is Christi's system. She insists on it being done the same way every time no matter who the nurse is. (Christi gets herself under control while the nurse keeps the needle out of sight and then Christi says, "Ready." Then the nurse MUST say, "One, two, three as she brings the needle out and puts it into Christi.) Well, this sweet nurse did it Christi's way the SECOND time and it worked like a charm. Christi even awarded her a score of "negative 2". (Christi always gives the nurses a score. The higher the number the worse the nurse did. So this sweet nurse in Tiffin got Christi's highest score ever awarded! Thank you, Mary!)

After Saturday morning's platelet transfusion in Tiffin we went to my Mom and Paw Paw's new home and had a glorious day. Our girls love nothing more than playing with my sister and her husband's three children. Even though Christi threw up two times (most likely a mild reaction to the platelet transfusion) we enjoyed a fabulous day all together and we also drove through the beautiful Christmas light display at the park in Upper Saturday night.

The girls fell fast asleep on our way back to Tiffin. Upon our arrival, we put the final touches on our packing and loaded the van. We had planned to sleep for a few hours before taking off, but Shayne couldn't sleep so off we went. Thank God for those angels who again provided us with a flawless, uneventful trip! Shayne pulled up in front of the Ronald McDonald House about 7:00 AM and he said he was asleep before he even up the van in park. (hee hee, I think!) The house didn't open up for a few hours, but as soon as I saw some volunteers getting in about 8:30 I grabbed Shayla (who was awake) and took off running for the gate figuring we'd just hang out in the kitchen until we could get a room. Thankfully, the Manager was there and gave us a room early! Praise God! Shayne needed to sleep in a bed so bad after driving for nine hours through the night. He was toast!

This time our Ronald room is in the old part of the mansion and it's incredible!! (Freezing cold with no way to adjust the heat, but gorgeous and HUGE! I'll take it!) In addition to the bedroom, there is a sitting room - which Christi's turned into her art studio and Shayla has turned her half into a playroom. We also have a small love seat, a table and chairs and the corner room boasts eight windows. Yahooo!! Much, much, much different than ANY experience at a Ronald McDonald House before. What a blessing! Shayne and I also like the fact that we're as far away from the kitchen as possible and that walking up and down the stairs to the very top floor should provide for some much needed exercise. (It's 42 steps.) Hopefully, the temperatures outside will warm up soon giving us a little more heat in the room. We've been leaving our door open to get the warm air from the hallway inside.

Shayla again vomited at exactly the same time (3:15 AM!) this morning, but I believe it is because both times she had a HUGE meal right before bed. So let us all learn a lesson not to devour a plate full of ham, noodles, corn, cookies and milk just before turning in! (Because of Christi's anesthesia on Monday morning, she was not permitted to eat after midnight so at nine o' clock on Sunday we offered her a big meal. She didn't eat much, but Shayla did! And paid for it - hmmmmmm.)

Today was the day for the dreaded bone marrow testing. She's had this conducted approximately twelve times in her cancer career. For those of you that don't know how this is done, it's like the doctors take a six to eight inch nail and insert it into her hip bones (Four places in NYC - front and back, just two here at CHOP as well as back in Columbus). Then they suck out the insides to obtain the bone marrow samples - aspirates and biopsies. Christi's never had a negative bone marrow test, but we pray that this will be the first one and that things will start looking up! It's an incredibly painful process which is why sedation is required, but it still is rough. The doctor told me Christi was so relaxed when she crawled up on the table to get put to sleep that he was amazed. She is so brave! She joked to him that "she is so tough she could stay awake even with his sleepy medicine if she wanted to, but she'd go to sleep this time since that was what he wanted." (Cracked us all up! Yeah, right, Christi!)

Dr. Suzi told us that her blood counts today were: white 1.4, Hgb. 9.3, platelets 72 (She said that Saturday's transfusion really boosted her platelet count. That's Buckeye blood for ya! hee hee!) Her ANC was 728. (We discontinued giving her the "G" shots on Christmas so perhaps she really is holding on her own - with the exception of the platelets.) Dr. Suzi also told us that tomorrow (Tuesday) she should have the preliminary bone marrow results for us. Oh, that will be fabulous not to have to wait until Friday!! If they're positive, that's easy (not good, but easy). If they're negative, then they will be sent out to Los Angeles and tested for cancer. That should be about a 7-10 day wait, but I'll be thrilled IF we get to that step! She will also have her CT scan and her MIBG isotope injection tomorrow.

Well, just wanted to let you know we arrived safely and to thank you for your sweet support and love! Have a great week and I'll post when I have some news.

In His love, Angela

Christi's Joke: "No jokes for my web site. I'm doing something important," said Christi with a paintbrush in her hand.

What's next? CT and MIBG isotope injection tomorrow. MIBG scan and ECHO on Wednesday. 8:30 AM meeting with Dr. Maris at CHOP on Friday to share the results of the tests/scans and to let us know CHOPs recommendation about what treatment to do next.

Prayer Requests remain: That her blood counts rise and that her scans / tests come back showing no signs of cancer. Yes, we are on our knees asking God to grant a miracle as only He can!

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