Friday, September 5, 2008

Friday, September 5, 2008

Today is national Stand Up to Cancer Day! But we have renamed it "Stand Up to Benedryl Day" (thanks Alison for this great idea!)!!!

Before I explain why we renamed September 5th, "Stand Up to Benedryl day," I need to tell you a little about what happened to Mattie last night. We began Mattie's round of Methotrexate yesterday at 9:30pm. Before we started, Peter, myself, and Kathy (the nurse) decided that we would administer three drugs before and in conjunction with the Methotrexate to prevent Mattie from experiencing nausea (as a recap, Mattie experienced a lot of vomiting last week, pretty soon after the administration of drug). These three drugs worked last week, though they were administered at different times. We thought we would side step this process this week, and instead give all the drugs at one time. Within 10 minutes of the administration of all the anti-emetics (anti-nausea meds), Mattie experienced intense itching in his genitalia. Peter and I made sure he did not have a rash there, which he did not, but the itching wasn't going away. Instead it got more intense, so much so, that he was trying to pull his private part off of his body. It was downright overwhelming, and the first thing that came to my mind was that the drugs made Mattie delusional (a somatic delusion). Fortunately within 45 minutes, all the drugs kicked in and he fell asleep, but it was 45 minutes of torture to watch. I never knew 45 minutes could seem to last a lifetime. During this time, we were putting ice on him to numb the area, and literally we looked like chickens running around trying to make the problem go away.

I thought that perhaps the worst was behind us last night, but that was being too optimist. Mattie woke up with intense itching on his chest today. He kept scratching, and scratching! Of course the more you tell a 6-year-old not to scratch, well, you know what happens. He was scratching so intensely that we could see he was pulling on Sparky, his central line. Kristin (our nurse) observed this and we determined that we would give him Benedryl to help with the itching. Within two to five minutes of the Benedryl administration, Mattie became a different child. He started screaming (Mommy, Mommy, Mommy... as if he was looking for me, not realizing I was right in front of him, holding onto him), punching us, hitting us, and kicking us. He went totally wild. We could not hold him back nor could we calm him down. There was no rationalizing with him either. Again, he was having a drug reaction, but this time we knew the culprit, it was Benedryl.

Peter and I had to restrain Mattie physically with our bodies, and we went through this for 30 minutes, as the residents tried to figure out what to give Mattie. They were trying to confirm what to do with the attending physician, but to me these 30 minutes seemed like 30 hours. Finally, after harassing the residents and nurses, Peter happened upon Dr. Norosian (an Intensivist), who jumped into the room, and told the residents that Mattie indeed needed to be sedated. Dr. Norosian pumped Mattie with 2mg of Ativan (a larger dosage than Mattie usually takes - 0.5mg). Pretty soon after that administration Mattie collapsed in bed for about two hours. Needless to say, we have made it very clear that Mattie should no longer get Benedryl. In fact, the resident and I were joking about this tonight, because this notation is now in Mattie's chart as well as all over the hospital pharmacy. So join me, in "Standing up to Benedryl!" It is hard enough to contend with the chemo treatments, but to see your child dealing with such drug reactions adds a dimension of stress and uncertainty on an already complex situation. I felt like I was on a psych ward today, instead of the PICU!

In the midst of a challenging day, Mattie had a few visitors. Ann came to visit us this morning at 11am. She could see I was visibly shaken up and gave me the opportunity to get outside and get some fresh air. I actually ate outside and then even read a few chapters out of one of the books I am reading (which coincidentally is about a boy with leukemia; of course I did not know this until I started reading the book). Peter went to work today, so Ann's visit came at a splendid time. I felt as if I wasn't going through this process alone today. Thank you Ann for the munchkins (which I have to admit, I popped about 12 of them myself today!) and Peter thanks you for the coffee. Ann brought some gifts with her today from Debbie Pollak (Mattie's art teacher at SSSAS). Debbie is a big Mattie supporter. She gave him three gifts. Mattie is savoring them, and he opened only one gift today. The card on this first gift said, "for your eyes." Mattie is really loving all the Veggie Tale videos. Thank you! He will open up box 2 "for your tummy," and box 3 "for your ears" tomorrow. Also, thanks to Grant and Miranda Elliott for the gifts. Mattie is medicated so we are holding off on opening the gifts until he sobers up this weekend.

The big news is that yesterday's fundraiser was a major success! Thank you Siobhan for running the bake sale. I want to thank the following moms for donating something to the sale: Leslie Wooley, Jenny Cavannaugh, Olivia Kane, Jane Pisano, Carolyn Coker, Ann Henshaw, Ann Sterba, Tanja Harding, Junko Ferris, Susan Scharf, Deb Keefe, Vikki Bires, and Kathy Brown. Ann brought Mattie one of the bake sale items today, and we concur the cupcakes were delicious.

This afternoon, Mattie had a visit from Susan Scharf. Susan is a friend of Vicki's and she brought all sorts of fun things for Mattie to play with. Susan brought Mattie a rubber bat to place in the roof of his hut, a toy gun shooting out foam circles (Mattie loves this and his nurses are hamming it up), some stickers, body armor (to ward off the bugs), and a dinosaur that Mattie had to literally dig out of a block of clay. So today, room C5202 was transformed into an archaeological dig. The dig was just what Mattie needed to get his mind off of his nausea and itchiness. You can see some photos of the dig and the final product below.

Mattie is ALL business! He was motivated to find dinosaur bones in the clay.

We all need a dream team! Here is Mattie's:

Linda (Child Life Specialist), Jessie (Art Therapist), and Jenny (Art Therapist)

Actually they are like Charlie's Angels, aren't they? Smart, resourceful and cute!

Mattie with his finished dino product. He dug out every dino bone, and then assembled the bones to produce a dino skeleton.

Toward the end of the day, Mattie had another visit from Jenny and Jessie, and they stayed with us into the early evening, chatting and keeping us company. In the midst of their visit, they helped catch vomit many times, pick up after Mattie, and did it all with huge smiles, support, and optimism. They are truly special ladies. Mattie also had a visit from Dr. Toretsky. Though this isn't his day to visit the PICU, he came to find out how Mattie was doing after hearing about his rough night and day. He is very committed to Mattie, and extremely responsive to our concerns. Believe me I have MANY!

On the electronic front, thank you Susan, Charlotte, Bernadette ("Bunny"), Barbsie, and Grammie for your wonderful e-mails. Thank you Kim and Margaret for your wonderful e-cards. They continue to bring cheer to Mattie and all of us. Thank you Coach Dave for your lovely e-mail and phone message today. We are happy to hear about your vanilla shake consumption as that brings a smile to Mattie's face each time he hears this. I received some very special e-mails today from friends, and I appreciate your insights, support, and honesty. Here is to a better day tomorrow. I leave you with a quote from a book I am reading: "There's no hurt so great that love can't heal it." It is up for debate on the legitimacy of this statement, but Peter and I know for sure that your love is a powerful force that helps us through each day.