Friday, August 29, 2008

Friday, August 29, 2008
It was a rough Thursday night into Friday. Fortunately Erin, Mattie's nurse, was on last night. She is a delightful, very patient, and competent nurse. She helped us through the entire process. Before I continue, let me tell you a little bit about Methotrexate, from a parent's perspective. For those of you not familiar with the chemo process, I want you to know that when a nurse starts the administration of the chemo (i.e. the infusion), she must protect herself by wearing VERY thick rubber type gloves. Why? Because the chemo drugs are toxic to the skin. When it is excreted in the urine it will burn your skin. With that in mind, now picture this stuff then coursing through your child's body. If it can burn the skin, you get the picture of what it does internally. Methotrexate has a memorable color as well. I call it highlighter yellow. The stuff literally looks like it is glowing, and as it dripped through Mattie's IV and down into his body, I couldn't help but wonder how on earth his body was going to react to this stuff.

Needless to say after ninety minutes from the start of methotrexate administration Mattie became very nauseous and started vomiting (can you guess the color of the vomit? You got it highlighter yellow/orange.). The vomiting just continued and Mattie started to look thoroughly worn out. So as the night progressed, Mattie was on Zofran, Ativan, and Benedryl for nausea. This combination seemed to do the trick as Mattie continued to be pumped up with fluids post-infusion to start eliminating Methotrexate from his body. So picture a child who is worn out from vomiting, dizzy and a little incoherent from the sedatives he was on, and having to jump out of bed every two hours throughout the night to go to the bathroom. Sometimes Mattie made it to the bathroom, and sometimes not. So Peter and I, in our stupor, (with Erin's help) were changing Mattie, changing the beds, and trying to collect urine every four hours to be tested. Made for a fun night.

I am now experiencing a level of tiredness that I have never had before. I have certainly had my share of sleepless nights before, like any parent caring for a newborn and not to mention years of being a student, having to study, pull all nighters, and balance clinical work with other things. But this type of tired is like no other. The scary part about all of this, is we know this tired feeling will not be going away anytime soon. The war and marathon are just beginning, and like any good athlete or soldier, we will need to figure out our long term strategy in order to be able to remain competitive. Unlike regular sporting games, our stakes are much higher, and as I have read in the psychological literature, there seems to be a positive correlation between a child's cancer survival rate and a parent's level of participation and involvement in the treatment process.

Toward mid-afternoon, Mattie started to perk up. We had a visit today from Dr. Toretsky. For those of you who would like to get to know a little bit about Dr. Toretsky from a more personal angle, I have attached his You Tube link. He and his son went on a musical retreat, and when you click on the link, you will see Dr. Toretsky playing both the clarinet and sax (not at the same time, but wouldn't that be funny if he could do that!). In addition, the young fellow playing the trombone in the video is Dr. Toretsky's son. Dr. Toretsky shared this summer vacation video with us, and I figure how many oncologists you know can play two instruments, have his/her own band, and also be on You Tube? Enjoy the link:
http://www.youtube.com/watch?v=wDY_4kEhWcY

We had a visit today from Ann and Alison. Linda was kind enough to play and watch Mattie for two hours today, so Peter and I could have a break. Ann and Alison brought us lots of treats. Ann, the vanilla frosted donut you brought Mattie is officially gone and of course the D&D coffee was a real treat for Pete! Last night Alison sent me an e-mail to ask what we wanted her to bring today for lunch. Poor Alison is becoming a standing customer at Rio Grande. Normally, I do not eat a lot of Mexican food, but I have major stress cravings for certain things, and Alison is kind enough to meet my demands. In addition, as I signed off in my e-mail last night to Alison I told her in jest to bring a nail file and a big shovel, so that I could successfully plan my escape from my own private Alcatraz. So don't you know it, before Alison left this afternoon, guess what she took out and gave me? That's right a nail file. I am still laughing over this because she got my joke and is playing along with me! Thank you Alison for all the thoughtful things you brought Mattie, Peter, and I. It is funny how life brings some people together, and Peter and I consider ourselves fortunate to have met Alison. Thank you Ann and Alison for helping us brainstorm fundraising ideas, and for helping us focus on what we are trying to accomplish. Our ultimate goal is to help Mattie, and so our initial fundraising efforts this year will be focused on generating funds for Mattie's care. So stay tuned for more information. I do want to comment though that a friend of Alison's, who we have never met, is doing a lot of research on our behalf to help figure out how to manage the funds we collect on Mattie's behalf. We continue to be amazed by the generosity and selflessness of those around us.

Speaking of selflessness, yesterday I received an e-mail from a nurse by the name of Christine. I never met Christine, but she learned about Mattie from a mutual preschool friend. Christine sent a lovely e-mail offering her services to help us at home with Mattie's care. She wants to be supportive of us and understands the stresses we are under. How do you adequately express thanks and true gratitude to someone you haven't even met before?!

Later on this afternoon, Mattie had a visit from Susan DeLaurentis. Susan is Mattie's school counselor at SSSAS. She delivered a beautiful bouquet of fruit. We have been enjoying it ever since. Thank you Susan! Susan also gave Mattie some fun treats, such as a National's jersey, some invisible ink books, and this cute book on how to make thumb animals. Mattie spent the afternoon working on dog and cat thumb prints. Susan is working hard with Bob Weiman, to figure out how to keep Mattie involved at school, but also how to normalize and explain what is happening to Mattie to his classmates. On an aside, each week, Susan sends Mattie a musical card in the mail. I told her Mattie loves them, and each card is so great, and instantaneously brings a smile to his face.

This evening, Elizabeth Murphy came to visit us. Elizabeth's son, Declan, is on Mattie's soccer team. Even though we just met Elizabeth in the spring, she is kind enough to bring us dinner and support us through this journey. All I can say is that through Mattie, Peter and I have met many remarkable people. Where would we be without Mattie? Our lives would be so empty on so many levels.

On the electronic front, Mattie received several lovely e-mails today from Grammie, Charlotte, Abigail, and Ms. Pollak. Thanks Grammie for the story about the bears and thank you Abigail for sharing your fishing picture with Mattie. Mattie happens to love to fish with his dad on the Potomac. A special thank you goes out to Kim and Karen for the e-cards. Mattie looks forward to seeing each and every card.

So here is to a better night for Mattie, a good Labor Day weekend to all of you, and know that Peter and I are deeply touched by each and every one of you.