Mattie's Absolute Neutrophil Count today was 33. Yesterday it was 35. So it has not changed much, and we need it to be at least 250 in order to be released from the hospital. So we wait. The irony is, for a little boy with a depletion of neutrophils (most common type of white blood cell, and are the first immune cells to arrive at a site of infection), he has an inordinate amount of energy. I was talking with a senior hem/onc nurse today, Kathy. I asked in her experience if most children with an ANC of 33 or below land up in the hospital with a fever (like Mattie). Her response was yes! However, she said the difference is that most children would be lethargic, tired, and not feeling well. Mattie is usually like that for one day, but then has a lot of energy thereafter. In fact, if you saw him, you most likely would think nothing is wrong with him. Mattie knows that his NY trip is coming up. He is very excited about this adventure since he has never been to NYC. However, if his counts aren't high enough, he isn't going anywhere. Peter and I haven't told him yet that perhaps we will be going without him. Monday should be an interesting day in terms of making this decision.
Today, was a very busy and fun day for Mattie. His first visitor was Ms. Mary Dressendorfer. Mary is Mattie's technology teacher at SSSAS. Mattie always loved his technology class and would come home last year, with these fabulous computer creations. Mary contacted me and told me she is willing to work with Mattie this year, and would like to bring him up to speed with the technology curriculum for the first grade. This was an amazingly generous and kind offer, since she is doing this on her own time, and refuses to be compensated for this. I had the pleasure of chatting with Mary today, and it turns out she is VERY familiar with Georgetown Hospital, since her mother was a three time cancer survivor. I continue to be in awe with how cancer survivors/patients and their families instanteously bond with each other. Mary brought an ibook with her, a type of Mac computer. What I found fascinating to watch is that Mattie knew exactly how to use the Mac (since we are a PC family) and how to use a particular program called KidPix. Mattie had a great time working with Mary, and Mary gave Peter and I the opportunity to leave the room for a while and have a change of scenery together. Before Mary left today, she let Mattie know that he could keep the ibook this week. That was very exciting news, and I am happy to report, that the computer is keeping him VERY busy. I think he likes the idea of having his own computer, and especially something familiar from SSSAS. Below you will see a picture of Mattie with Mary as well as a creation he designed on the computer using KidPix. Mattie entitled this creation, "Mattie's laboratory!"
Thanks Mary for sharing your skills and time with us today. The computer and the donut were major hits!
Mattie's second visitor today was Coach Dave. Coach Dave let Mattie know that the Saints Football team won the homecoming game. This was exciting news! Peter and I are so impressed by Dave. He truly cares about Mattie, and we are enjoying the opportunity to get to know more about him. Dave is very familiar with the Georgetown campus, since he was the university's football coach for many years, before coming to SSSAS. Dave brought a DVD of last week's Saints football game for Mattie to watch. In addition, Dave's daughter, Sarah, picked up a cute Saints panda bear for Mattie at homecoming, and it now sits proudly on his bed. Thank you for all the wonderful gifts, your love for Mattie, and your generosity of time! Below is a picture of Mattie with Coach Dave.
I received a lovely e-mail today from Susie Saadat. I have only met Susie once before the carwash fundraiser. Susie is a dear friend of our former neighbor, Goli. You may recall from a previous e-mail that I mentioned Goli no longer lives in DC, but moved to NYC. I know that Goli wishes she lived closer so she could do more for us. But Goli contacted her good friend, Susie when she learned about Mattie's cancer. Susie immediately went into action and has been supporting us in so many ways. Today Susie let me know that she has collected $2800 from friends, neighbors, and family in support of Mattie. I am not sure how we can ever thank Susie and Goli, but their kindness, generosity, and love for a six year old boy and his family will never be forgotten. All the money we collect for Mattie will be going to his treatment, plans for his future, and for osteosarcoma research. Not that I think we need to say this, because all of you have been so generous and are not even giving it a second thought about what Peter and I are doing with this money, but Peter and I feel better that you know, we are not using any fundraiser money to help finance our trip to NYC, or any other expenses that are not directly related to Mattie's health and future. In fact, we have asked Alison McSlarrow to help us oversee Mattie's account, and we feel a third party evaluating this fund is a very good idea.
Over the past several weeks, I have gotten to know Maria Hammann. Maria is the mom of Teresa, an osteosarcoma survivor and also a patient of Dr. Toretsky's. Maria and I have very similar outlooks and perspectives on things, and I consider myself very fortunate to have her supporting me. She e-mails often and even took Teresa up to Mattie's PICU room once to play with him. He thoroughly enjoyed her company. The ironic part is I haven't known Maria very long. But when I saw her a few weeks ago at the clinic in fear that Teresa's cancer reoccurred, I couldn't get over how this affected me. I was worried about Teresa all day and couldn't wait to hear what the tests revealed. Fortunately Teresa is fine, but the fear of what the future holds is a very real threat for cancer survivors and their families. I look at Teresa and see the picture of health. She has survived a horrible ordeal and battle, but she has come out shinning. She is the picture of hope for me, and when I thought she had a reoccurence of osteosarcoma, my heart dropped and felt heavy. Maria has helped normalize this ordeal for me on many occasions, and has even helped me put the trip to NYC in perspective, since she met with the same surgeon a while back. It is hard to know why Cancer has come into our lives, but one thing is for certain, God has helped us by introducing us to such special people like Maria.
1 comment:
I think your friend Jen perfectly described how I feel after reading your blog. Well said. Glad you have been able to have a couple nights of rest and some time alone with Pete! Hugs, Julia
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