Sunday, August 10th, 2008

Sunday, August 10th, 2008 - Mattie officially finished up the drug regimen portion of his first week of chemo last night around 9:30pm. So the balance of last night's and today's activities were focused on making him as comfortable as possible and on reducing the amount of nausea and emesis. Mattie spent the evening and today fighting off nausea and emesis, which made him lethargic and miserable. We thought we had a small victory tonight when Mattie was hungry and requested Mac 'n cheese of which he ate a half serving (not bad for a six year old who had gone through chemo and not eaten or drunk anything in three days). But, the victory was erased after an hour when we were trying to get an oral stool softener and his Nystatin (an anti biotic that coats the throat to prevent thrush, a fungal infection of the throat) down, and Mattie vomitted up both the medication he had just taken and the food.

This episode left me and Vicki with a lot of frustration and depression since we had worked so hard to get Mattie to eat and drink again only to have it erased by another element of the treatment regimen. I'd say it was ironic that one aspect of the cure actually undid the progress that another aspect was making, but then that would add only negative thoughts to an already grim situation.

We're giving Mattie Zofran (anti-nausea) again tonight in the hopes this finally helps surpress the nausea so that we can give him more food at some point, and with the hope that we can stabilize him by tomorrow so that we have the option to go home if we like. Frankly, given that the MRI is on Tuesday at 1pm and his biopsies are wednesday at 7am and that we will have to be at Main Registration by 5am, I think we will likely stay in the hospital, but we do not know for sure.

The toll is making its mark on Mattie. Last week, Mattie asked whether children can die. Today he said to me that he wanted to die, which is not something Mattie has ever said before to me or Vicki. Although this was said in the context of him having gone through chemo and being nauseous for several days, I was still surprised, shocked, and devastated to have my six year-old, picture of perfect health now dealing with cancer, saying this to me. It crushed me and I had to stop myself from thinking about it. In the past, when Mattie has asked what happened to someone who was no longer with us (Great Grandmas and Granddads for example), we have told him the truth that some people get sick and die and based on our religious beliefs are joined with God in heaven.

After he said he wanted to die, I did my best to catch myself and responded to him quickly as if he had just made a ludicrious statement, but neither Vicki nor I have ever addressed this issue with him. However, Mattie is a smart kid and sufficiently perceptive on some level to understand that he is really sick. Vicki did talk with him and helped him verbalize why he thought he was dying and that he may feel this way now because the medicines have made him sick, but that this feeling will be temporary but yet necessary to get the "bugs" out.

Mattie also said today that he was ugly, which also crushed Vicki and me. I think Mattie is clearly observing and sensing that he looks and behaves differently, and believes he is being treated that way. Mattie has a huge triple pump IV pole connected and next to him at all times; he has dangling tubes connecting him and his chest; he is wearing a hospital gown and not normal clothes, and most importantly, he cannot do what his friends can do and therefore feels self-conscious and overwhelmed. I am no mental health professional, and perhaps my conclusions are wrong, but I don't think so. The implications of this will continue to unfold but one thing is for sure, Mattie will be more isolated while he is battling this disease in part because he will be out of school, but also because of the treatments and the surgeries, each of which will be significant with many, many months of physical therapy, will mean more isolation and situations where he knows others will point out that he is different. So, we'll have to come to grips with how to address this at some point.

We had a bunch of visitors again today. Kim Messinger, Director of Resurrection Children's Center, came by today to say hi to Mattie (who was in one of his "icky" states) and to give us some pictures of Mattie several years ago at RCC. Also, Mattie had a group of RCC buddies show up as well this afternoon including: Kate, Eric and Jaimie along with their parents Dave and Julia Lee; Sam, Maddie and Ryan and their parents Ashley and Bob Glennon, as well as Bob's parents "Mima and Pipa" Glennon (fellow Bostonians and Sox fans). Thanks Lana for the special gift bag, thanks to the Glennon Family for the great pirate book and thanks to the Lees for the breakfast materials.

Additionally, Mattie got a visit from Nikki Biers (a SSSAS buddy) and her brother Lucas and parents Frank and Viki, and Campbell Cooper (a SSSAS buddy) and his mom Christine. Thanks for the Indiana Jones DS cartridge and thanks to Christine for the Scooby-themed items for Mattie, dinner and the special things for us.

We also got a visit from an RCC buddy Sara Catherine Canterbury along with her brother Garret and her mom and dad Catherine and Brian. Thanks Catherine and Brian for all the useful and thoughtful things to continue making this a little easier. Vicki, loves the cookies! Last, Anand Narasimhan, his wife Ella and daughter Daia also paid a visit last night and gave Mattie some things which was very thoughtful. Anand is the Chief Technology Officer at Voxiva, Pete's company, and is moving to Israel in a few weeks to be closer to Ella's mother who is not doing well either. So in summary, Mattie had a very busy social day.

I go to bed with a racing mind fatigued by several weeks of sleepless nights, life-altering revelations by day and racked by a complete loss of my sense of time or day (something that I live by precisely). Both Vicki and I understand that it will be five or more weeks before we have any early indications that the chemo is having an effect on the tumor growth. A metric that we will be watching is the alkaline phosphotase level in the blood. The Alkaline-phosphotase enzyme is an indicator of bone cell activity. In Mattie the level is 3-4 times higher than normal for a child his age (Mattie's is around the 600 to 700 range), who by the way have a lot of bone growth occurring. Although the level is expected to rise slightly with the administration of the chemo, we ideally want to see Mattie's number level-off and stop climbing, and ideally see it start falling as this could be an indication that the bad bone cells are dying-off.

In addition to our hope that the chemo works, the thought of all the surgeries, bone replacements, artificial prostheses, loss of function and physical therapy is overwhelming and almost too much to think about at once. I have to push myself to think about it, which is its own separate torture given all that we have gone through and all that we are dealing with at this point. All we can do is get the best care available, make Mattie as comfortable as possible, and allow our family and friends to surround us in love and support. So thank you everyone for all that you do as it does make a difference to us.