Tuesday, November 25, 2008Message of the day (Thanks Susan S.!): "By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired." Susan said, "So conversely if we don't desire Mattie to be ill, then he has to be on the road to health, right???"
In the spirit of Thanksgiving, my lifetime friend, Karen (who is a math teacher at La Guardia High School or better known as the Fame school in NYC) had her students design some turkeys for Mattie to cheer him up. Some of these turkeys are down right works of art, so fitting of the talent at the school. We have two boxes filled with turkeys, and we are enjoying looking at each one. The students used every medium possible such as paint, paper, feathers, and newspaper in a very creative manner. We are literally surrounded by 100's of turkeys and I wish I could capture all of them on camera. Thank you Karen for this colorful and lovely gift. Peter
liked your "wild turkey" gift too!
Before I tell you about our day, I want to let you know that the Karo syrup worked like a charm. At 4am today, Mattie went to the bathroom and felt much better. Needless to say, I am throwing out every laxative I have ever been given. They don't work well, and to me a more natural remedy which has worked for generations is a better way to go. I am taking Karo syrup with me on every hospital visit!
Ann came over today and played with Mattie while Peter and I went to Georgetown University Hospital to discuss the next steps in Mattie's treatment with his doctors. Ann kept Mattie thoroughly engaged and occupied for several hours, since our meeting was over two hours long. Mattie and Ann created a volcano, played with a remote control tank (thanks for that great gift!), and did a host of other science projects like making snow and crystals. Mattie loved his donut and we plan on enjoying the pumpkin loaf. We are blessed to have a friend like Ann. Mattie gets along beautifully with her, and her bag of tricks are always a hit. She is the modern day version of Mary Poppins.
Today's meeting was helpful and yet solemn at the same time. In attendance at the meeting was Dr. Toretsky, Dr. Synder, Denise (our social worker), Catherine (our nurse case manager), and Kathy (our nurse practitioner). Dr. Toretsky did a very thorough job of seeking out consultations from oncologists all over the country and world. Of the main hospitals in the US that were contacted and weighed in on treatment with a written report were NIH, Sloan Kettering, St. Jude's, and MD Anderson. There were others involved as well, that shared their opinions verbally. All these professionals came to a consensus about Mattie's treatment yesterday in the tumor board meeting. The next step in chemo treatment is a hard decision, and as a parent I don't want to ever look back and say that Peter and I did not seek out other medical opinions, that we did not do our homework, and wonder if there were other options out there that we should have considered. As of today, I feel these fears have been put to rest. Which is a gift! Today we learned about Mattie's pathology results for the other three tumor sites. You will recall that his right arm's percentage of necrosis was 60%. Necrosis means the pathologic death of one of more cells. The percentage of necrosis in primary osteosarcoma, after the patient receives preoperative chemotherapy, is an indicator used to select subsequent chemotherapy post surgery. Any thing less than 90% necrosis is considered a "poor" response to pre-surgery chemotherapy. So we already knew Mattie's right arm was a poor responder. But it wasn't until today did we realize just how complex a case Mattie is. Dr. Toretsky said the research community is lucky if they see one case of multifocal osteosarcoma presented a year in the entire world. In any case, in the sparse literature on multifocal, it reveals that typically the percent necrosis in one tumor, is the percent necrosis that is seen in the other tumor sites as well. So if Mattie followed what the literature says, then his other three tumor sites would also reveal a 60% necrosis level. However, you should be seeing a trend with Mattie by now. He breaks the mold. To my understanding there is no other multifocal case in the world that has presented like Mattie's! We learned that in his left arm and wrist he is considered a "good" responder, with a 95% and 100% necrosis level respectively. However, in Mattie's right leg, there was only 2% necrosis (meaning that at least 98% of the tumor was alive and viable at the time it was removed during surgery). This finding is very disturbing to both us and the doctors. Why? Not only is it a VERY low percentage number, indicating that chemo basically was totally ineffective for this area of Mattie's body, but that if you recall back in August when a biopsy was performed on the leg (five days after chemo), the biopsy revealed that all the tumor cells were dead. We took that as a VERY positive sign, that after only five days of chemo, all the tumor cells were killed in the leg. So how do we go from all dead cells in August, to a 2% level of necrosis in the leg today? Well there are a lot of theories, but one theory is the tumor regenerated and it came back stronger and resistant to the current chemo treatment Mattie was on. So you may be asking yourself, why is all of this relevant and important to know? Isn't Mattie cancer free now, weren't all the tumors removed? The answer is yes. The tumors are out, and Mattie appears to be cancer free now. But Mattie must go back on chemo, because while the tumors were still in his body, most likely pieces of tumor cells broke off and went floating around his body. In fact, if we did not do post-surgery chemo Mattie would definitely died. All the research indicates this! Which is why there is post-surgery chemo now in all osteosarcoma protocols. However, what the 2% level of necrosis tells us is that the current chemo isn't working, and if for some reason parts of this leg tumor did migrate around the body prior to surgery, then do we want to continue to use the current chemo which we know doesn't work on this tumor to eradicate the remaining pieces in the body? Common sense alone says NO WAY!
Peter and I learned that the medical community is recommending that we add two other chemo drugs to Mattie's treatment: Ifosfamide (I) and Etoposide (E). In addition, there is also the potential to add MTPPE, an experimental drug that boosts one's natural immune system, to Mattie's treatment, but this drug's first dosage can only be administered at Sloan Kettering, NY or MD Anderson, TX. After the first administration the remaining dosages can be done at Georgetown. Well this all sounds like a simple decision, doesn't it?! Just add I and E and MTPPE. Well here is the catch. I and E can have potentially nasty and long term side effects such as renal failure, damage to the heart muscle, development of leukemia, damage to brain tissue, and sterility. So I guess as a parent you have to pick your poision. What can you live with? Certainly if we don't attack the cancer aggressively, then Mattie won't make it, but if we do give him these heavy duty chemo drugs, then he may make it through the cancer, but be left with other complicated issues. So Peter and I are pondering this decision and mind you we have to make it quick, because Mattie restarts chemo on monday!
While in the meeting, Peter continued to ask the doctors about other options. It is possible, though I don't like going there, that while Mattie is on this chemo treatment, that other tumors could arise. Actually I guess I am so far in denial, I never even thought of that scenario until Peter brought it up. Now here is the killer, if tumors arise during Mattie's post-surgery chemo treatment, then the doctors feel that there is no known treatment that will cure Mattie of osteosarcoma. Ideally what we are looking for is a complete cure, but Dr. Toretsky explained that Mattie's chances are greater for survival if he can remain tumor free for a year to two years after treatment. After two hours of such a discussion, I can honesty say I felt nothing. I did not feel sad, I did not feel angry, I did not even feel depressed. I was too much in shock to feel anything!
In my heart of hearts I know we need to add I and E to Mattie's treatment to give him a chance at having a life. When we went to Sloan Kettering a few months ago, they recommended not using I and E. Instead they encouraged us to keep that on the back burner to use when Mattie's cancer reoccurs. Georgetown feels like this isn't a viable option. They feel that we shouldn't wait. Because if his cancer comes back it will most likely be more extensive and the window to treat the cancer aggressively would have passed. So with this line of reasoning, how can we not sign a consent form to give Mattie I and E? I don't know but these are the questions that plague me at 11pm when I have a minute to myself.
Mattie and I had a slow afternoon, but I continue to grow concerned regarding his tail bone ulcer, which is looking more red. I learned that our insurance company will not pay completely for in home nursing visits, nor will they cover the use of a nurse's aide. Got to love it on so many levels. Fortunately I am transferring Mattie without a problem, but I hope that Dan, the PT, can get Mattie up and moving some how this week. Mattie needs to be able to shift his body around. My parents came over today to visit Mattie, and he gave them a hard time, as he has done now since the second surgery. However, he was able to verbalize with my mom today that he wants to see my parents, but that he is just angry and he doesn't know why or how to show it. I thought that was such a perceptive comment, and hopefully we will be able to process that some more with him so that he can feel free to safely explore the anger without taking it out on us.
We want to thank the Coker family for an amazing dinner tonight from the Cheesecake Factory. Nothing like meatloaf on a cold day, not to mention all the wonderful cheese cake and chocolate cake. Also I have never seen a macaroni and cheese like the one the Cheesecake Factory made tonight. It was to die for, even Mattie took notice. Unfortunately Mattie is back to his NO eating kick. However, I am sticking in powdered protein in anything that he will eat and drink, in hopes this will help supplement his diet.
On the electronic front, we want to thank Bob Weiman (what a great Jib Jab of Mattie's grandparents square dancing!), Karen, Allen, Susan, and Brian Boru for the wonderful e-cards and e-mails. We also want to thank the Murphy family for the wonderful Thanksgiving day homemade cards!
I end tonight by telling you about a very special gift I received in the mail yesterday. A prayer shawl. It comes from Jim and Julie Bennett in Maine. Mr. and Mrs. Bennett are the parents of my friend Leslie. Leslie was my first college roommate. I wore the shawl all day today! It is a beautiful blue color, and it is so warm and inviting. It was made with a lot of love and the tender and spiritual message it came with was moving. Here is what Julie wrote about the shawl, "I'm part of a shawl knitting ministry at my church. It's a very special mission for me and I wanted you and Mattie to have a shawl. I have said many prayers into the knitting of this shawl. As a crafter I feel great joy in thinking that I may bring you some comfort. As you wrap yourself in the prayer shawl may you feel the presence of those who love you and the warmth of the one that loves you." In times like these, I cling tightly to the shawl and the meaning behind it! I am thankful for such a special gift that took so much time, energy, and effort to create.
Goodnight and thank you for the opportunity to share our day with you today. I know you are all out there reading and listening, and that is of great comfort to us. Walking this path is hard enough, but to do it alone would make it impossible.
Sunday, November 23, 2008
Mattie has been on a cheese stick frenzy. Tricia (one of Mattie's favorite HEM/ONC nurses), joked with him that he was going to turn into a cheese stick from eating so much cheese. I am just happy he is eating something. The nurses on our 10 day stay at the hospital were just incredible! Last night I went out of Mattie's room to get some ice, and I passed many of Mattie's nurses in the hallway, both PICU and HEM/ONC included. I stopped to chat with them, and they truly are our family away from home. We are very lucky to have such wonderful nurses caring for us, who responded immediately to all of Mattie's pain management issues. It was a long 10 days, but what a fine group of women we were surrounded by. 
