Journal Entry


Monday evening, February 24, 2003

Today we met to hear the recommendation for Christi at the same time that Grandpa's funeral was being conducted back home. I felt my mind flipping back to that instead of really focusing on what was being told to us. I think numbness is perhaps the body's way of diminishing the pain. I'll have Shayne proof this entry to make sure everything is 100% accurate due to my inability to concentrate this morning.

She's really old for this disease. If she were one to four years old, she'd have a much better chance, but that is not the case. Her scans and bone marrow tests have indicated no improvement since we arrived here in New York. She has refractory disease meaning it no longer responds to chemo. It is not; however, progressive disease at this time. Nevertheless, there is one fairly common chemotherapy agent she had not yet had - Topetecan. It is doubtful that it will help to clear up the cancerous cells in her bone marrow, but he doesn't want to not try it. Therefore, tomorrow morning she will begin four days of Cisplatin and Topetecan. Shayne pressed Dr. Kushner to justify the use of Cisplatin and he did. While the hearing loss is almost guaranteed to happen there is a slight chance that the Cisplatin may kick the Neuroblastoma cells out of her marrow at this super high dosage. (It will be "200". At home she only received "60" with each of her four rounds so you can tell how much more he'll be giving her here. Ouch! The hearing loss (oxtocity) occurs with the cumulative dosing and we're looking at over 400 now which isn't good; however, if her life can be saved I will gladly accept hearing loss.)

Dr. Kushner doesn't think this will rid her marrow of the cancer; however, he wants to try it and then to repeat all of the tests (MiBG scan, bone marrows, CT and a bone scan) to see and then try to do a stem cell harvest. (You can't do the MiBG radiation therapy without a back up of your stem cells in case a rescue is needed.) Then have her surgery. At that point, he'll more than likely be referring us to Children's Hospital of Philadelphia (CHOP) to have them perform their MiBG radiation therapy. This is where they inject a radioactive isotope into Christi. (And actually making her radioactive where no one could touch her for at least five days and every single thing taken into her hospital room will be left there and destroyed.) The isotope is taken up into the nueroblastoma and where it radiates the cancerous cells. It's probably not curative, but may help to clear the marrow so that we can come back to New York and proceed with treatment. Our goal would be to significantly reduce the cancer in the marrow with the MIBG therapy, come back to New York mop up the remaining cancer with monoclonal antibodies do consolidation dose chemotherapy with stem cell rescue. Following that we would proceed with six months of antibodies and accutane.

It's still so hard to accept and to believe this. As we were walking back out to get the girls where we left them with a volunteer, Shayne turned to me and said, "Are you okay?" Well, I knew he knew I wasn't, but of course I couldn't cry there and we needed to relieve the volunteer, so I said, "Sure. Nothing we didn't already know." but I was clenching my teeth as to not break down. I just can't believe we live in today's world and don't know the cause or more importantly to me now the cure to this beast!! I always thought my girls would be very successful and happy in life with whatever they wanted to do because they had such a fabulous Dad so actively involved in their lives. It seems that I've read so much about girls who get in trouble and it always goes back to the lack of a father figure in their lives. I just hope she can grow up and get the chance to live because Shayne and I will always be there to support our girls with all of their successes and all of their failures and setbacks! Please God, give her a chance to live a full life and to make a positive difference in the world.

So, I pray that this seventh round of high chemo (Cisplatin and Topetecan) beginning tomorrow will do the trick to rid her body of this horrid beast. I pray that the side-effects will not occur. And I pray that my headache I've had since Friday will soon go away or at least be diminished. Thank you all for everything! I hope this bad news didn't get anyone down, but I knew that some of you would want to know what was going on and like specific things to pray for. Thank you!

In His love,
Angela

PS: Today we spent the day exploring the Lincoln Center area. This is where the opera, ballet, etc. are located. We also went to The Juilliard School which is also in this same Upper West Side of the city.

EARLY TUESDAY MORNING UPDATE: About 11:00 PM last night Shayne noticed that Christi had spiked a fever. We gathered things up and he took her down to Urgent Care while I stayed back with Shayla to sleep. I knew she'd be admitted, but it was so odd I couldn't imagine what caused the fever. About 2:00 this morning, I opened the door for Christi and Shayne. Her fever broke, they gave her high doses of antibiotics and told him to have her back in a few hours to start her chemo. So, now I'm off while Shayla and Shayne will stay back and come over later. Hope you have a great day!

Christi's Joke: "Why did the spider cross the keyboard?" (He was trying to get to the other web site.) She's still got great spirits! I like her being clueless; however, it's been increasingly difficult for Shayne and I to remain "up". She still doesn't know how very, very sick she is and how little time she probably has left.

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