Monday, October 6, 2008

Monday, October 6, 2008

Peter and I have been working with Alison McSlarrow on creating an electronic way for Mattie supporters to donate to his fund on line. We have appointed Alison our director of communications and manager of Mattie's fund. For those of you who do not know Alison, you have a real treat in store for you. She has become a dear friend and she happens to be the mother of one of Mattie's SSSAS buddies, Paul. Thank you Alison for helping us secure a PO Box, a separate e-mail address for the fund, and a business phone line. So today we unfolded this new addition to Mattie's blog. You can see some information about how to donate to Mattie's fund on the left hand side of the blog homepage. Feel free to contact Alison with questions and concerns. I want to thank Stephen Naiman, the band teacher at the Fessenden School in Newton, MA for being the first electronic donor! All contributions will be used to help Mattie directly in terms of his treatment and future. I thank all my long distance blog followers who encouraged me to pursue this option on the blog.

Mattie woke up crying this morning. I was running around trying to pack and get ready for today, but I could see what took priority. So I stopped everything I was doing, and sat in his bed with him and calmed him down and chatted with him until he felt better. Mattie bounced back quickly, and then devoured enough breakfast for three people. We then headed to the hospital, registered, and checked into his room. In order to start the administration of methotrexate, Mattie's urine PH level had to be above 7. It literally took over 7 hours today for his PH level to rise. In the midst of waiting, we did NOT sit still. Mattie made a deal with Kathleen, his nurse. Mattie said he would allow her to take his vitals, if she found a way for him to go down on the clinic where Jenny and Jessie were while waiting for his urine levels to clear. That was an easy deal! While Mattie was going through his vitals check, Jenny met him in his room. They started building an ant house together. Mattie was VERY focused. Then Jenny helped Mattie and I to the clinic. I say help, because Mattie was connected to a huge IV pump and somehow it takes two people to negotiate this large piece of equipment onto an elevator. Mattie had a blast in the clinic. He played with Jenny and Jessie, and even made a new friend today, Kendall. Kendall and Mattie worked together designing Mattie's "haunted house." It was the talk of the clinic today. Below you can see some pictures of this haunted house. The house is now in our small 2x4 hospital room. But it is adorable and creative, and it made Mattie very happy.

Mattie and Jenny designed a wonderful witch out of wire! Not to mention the fantastic ghosts and the house structure itself! I call Mattie, my "little engineer."

After his time in the clinic, he came back upstairs to the PICU. But before heading to his room, he walked into the newly opened childlife playroom. It was thrilling to see this room open and operational. Linda and her interns have been working over time trying to get this room ready. But it is spectacular and a much welcomed addition to the floor. I told Linda we had the opportunity to actually talk with another family in the playroom today, rather than the two second meetings we have been having in hallways with other parents. Mattie also made another friend today, Brandon. Brandon is also a cancer patient and a teen. He is a very refined and caring young man. He was a good pal today with Mattie and even shared some marshmellows with Mattie. For some reason the playroom seems like a wonderful area for opportunities, and we look forward to our continued visits. Thank you Linda for making Mattie feel welcome there today, and for also checking on us before you left for the day. Where would we be without Linda, Jenny, and Jessie? It is ironic, Sloan has all the resources in the world, but really money and resources aren't always the solution. The type and quality of the professionals running the services are the ultimate benchmark.

Mattie is currently building another wood structure while I am typing this blog. In a matter of an hour, he will start his methotrexate infusion. (Update as of 11:00pm: the pediatric oncologist pharmacist who puts together Mattie's chemo messed it up. She measured a dosage for a baby not for a 6 year old. So needless to say, she left for the day, and lives over an hour away from the hospital. They called her back to the hospital and she is now making up the appropriate concentration for Mattie. So we have yet to start the process.) Who knows what the rest of the week will bring. It is ironic that just when Mattie started feeling better, we dose him up again with this toxic stuff. Mattie literally ate today like a champ. He had a full lunch, and ate a full plate of spaghetti with tomato sauce and a slice of pizza for dinner. This sounds trivial, but this was actually major news since he looked like he was on a starvation diet for over a week!

I had the opportunity to received two lovely e-mails today. I really reflect deeply on these e-mails I receive and many of them I use to help me through our darker moments. One is from my dear friend Amany. Amany wrote, "You are the consummate mother and one the rest of us should be measured by--You are truly incredible and everything you say and do brings tears to my eyes and joy to my heart. I really hope you publish the blog one day--you have a beautiful way of capturing the experience and emotion with such poignancy." The second e-mail was from a dear family friend, Lorraine. Lorraine has been trying to help me find a family who would adopt Patches in the short term. Patches is a very complicated and sickly cat, and she can't go to just anyone to be watched. Lorraine created a wonderful flyer about Patches, and apparently this flyer has circulated all around US Airlines. Even US Airlines knows about Patches and Mattie. Amazing! Here is a message Lorraine received today about Patches, "I sent this email [the Patches email] to my daughter Bridgette. She is a flight attendant with US Airlines and she told me that she was printing this out and putting it up in the "flight room" where all of the flight attendants and pilots hang out waiting for their flights and where they pick up their mail. Please keep me posted as to whether or not Patches has found a temporary home. My daughter would love to have a cat but her husband and my other daughter are allergic to cats BIG TIME." So, it seems Patches' story and therefore Mattie's story is circulating to all of the flight attendants and pilots who work for US Airlines!

We want to thank Patty T. for the wonderful dinner she had delivered to us at the hospital tonight. This was such a lovely surprise. We love California Pizza kitchen pizzas, and Mattie devoured pasta and pizza tonight like it was going out of style. Thank you for you thoughtfulness and generosity.

On the electronic front, thank you Karen and Kim for your wonderful e-cards, and John T., Coach Dave, and Susan for your e-mails. We want to especially thank the Commonwealth Baptist Church for their wonderful rainbow card that we received. We love the "day by day" song verse written in the card. I think the rainbow is such an appropriate symbol for our situation. To me a rainbow is a symbol of what is to come, new opportunities, new connections and healing. Of course, what is the real meaning of the rainbow? There are certainly a lot of myths out there about them, but when you have the opportunity to see one of these beautiful and unique structures in the sky again, take a minute and reflect on the important things in your life. The things that do not really need words to be appreciated.

PS: Peter wanted me to mention that the Red Sox also won tonight and beat the Anaheim Angels to advance to the American League Championship Series against the Tampa Bay Devil Rays. Go Sox!