We Proudly Announce the Mattie Miracle Cancer Foundation!

In honor of Mattie, we would like to announce the launch of the Mattie Miracle Cancer Foundation (MMCF)! This foundation was created in the honor of Mattie.

We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Pediatric Cancers. We are also dedicated to building the awareness of and educating medical professionals and the world about Osteosarcoma and Pediatric Cancers, as well as advocating for the needs of the children and their families who are fighting and will fight this terrible, terrible disease.

Please check out our website at: http://www.mattiemiracle.com/ and take some time to explore the site. Our first Board meeting will happen in December, and from that we expect to develop a variety of programs, services and initiatives. We only got this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember: Let's Make the Miracle Happen and Stomp Out Osteosarcoma!

Our request to you!

To all our Mattie supporters, we want to express our heartfelt thanks for your incredibly loving and generous support of us during the 16 months of battling cancer. We also acknowledge that we need your support more than ever now.

It is our hope that you will consider making a tax deductible donation to the Mattie Miracle Cancer Foundation. Again, thank for your support, love, and kindness. Peter and I would have been lost this year without it.

Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.
Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.
Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.
Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.
Chest CT scans post surgery: December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.
Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.
PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.
Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Random Shots of Mattie, Family and Friends

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July 17, 2009

Friday, July 17, 2009

Friday, July 17, 2009

Thank you for signing Mattie's LIVESTRONG dedication page! Please keep the signatures coming, we value your support!http://www.livestrongaction.org/node/20612

Quote of the day: "Every action in our lives touches on some chord that will vibrate in eternity." ~ Edwin Hubbel Chapin

Mattie had a hard time falling asleep last night. In fact, he finally went to bed at 2am. Mattie complained of pain and feeling "strange." You should know that we have eliminated ALL pain medication. So he is no longer on Fentanyl or Roxocodone as of two days ago. If Mattie complains of pain, which he most likely will experience after physical therapy or after exerting his body in ways he hasn't for months, then we can administer him Children's Tylenol. Mattie was very concerned about this "strange" feeling he was having. At first I did not get what he was talking about, but then I put two in two together and figured that his body is working on withdrawing from all these pain medications. So I discussed with him that it was completely natural if he was feeling "strange." I told him he may be feeling edgy, have headaches, and other symptoms or as he describes it feeling jumpy from his head to his toes. I told him this feeling would go away in a couple of days, and that the positive news was he did not need pain medication any more because he is better. The irony is, when he woke up this morning, the first thing he announced to me was that he wasn't feeling "strange" anymore. Excellent, let's hope this is really the case!
Mattie had the opportunity to work with a new helper today, Marissa. Ann told me about Marissa, because Marissa lives in Ann's neighborhood. I quickly learned that Marissa was a former hospital volunteer of Linda's. So Linda and I discussed Marissa and then Linda e-mailed Marissa on our behalf and summarized Mattie's situation and interests to Marissa. Linda also gave Marissa ideas about how to approach Mattie on their initial meeting. As always, I am happy to have Linda's assistance. When Marissa arrived, Mattie was shy and pretty shut off. Not unusual for Mattie. I told Marissa about Mattie's physical limitations as well as the things he likes to do. However, Mattie was deeply engrossed in his Lego set, and I encouraged Marissa to build along side him. I took a picture of the Taj Mahal Lego set, it is not completed yet, but it is definitely a work in progress!
While Marissa and Mattie were busy building together, I left the house and went to visit Ann's parents. Ann and her family are on vacation, and I know how much her parents rely on her each day. So when she is gone, it is like a major hole has been created in their lives. I am not a stranger to the role of a family caregiver or the issues faced by older adults. However, now that I have lived in an institutional setting for 11 straight months with Mattie, I have insights about the profound loneliness, isolation, and feelings of being disconnected from the real world, which I did not completely comprehend before. Though Ann's parents are not in a hospital, there are many similarities to this form of living and living in an assisted living facility. In both places you have no control over your schedule, what you eat, what you are allowed to do, who comes in and out of your room, and who you interact with. Therefore, with Mattie covered today, I felt compelled to visit Mary and Sully (Ann's parents). I brought them all sorts of foods and other things linking them to the outside world, like newspapers. We spent a good chunk of the day together, talked about so many different things (Mattie included), and I even had the opportunity to see their 50th anniversary video that Ann made for them. I could see the video brought them great joy, and it was nice that they wanted to share this with me. I gave Mary a manicure, and I think one of her favorite parts is having lotion put on her hands. There is something very healing about the physical touch, and you can see her relax as I hold her hands. I had the opportunity to help them with dinner too, and had a fun time chatting with Ann's dad. He told me tonight that I am part of their family, and I truly believe he feels this way. Needless to say, I was very touched by his sincerity and care. As I was leaving, Mary asked me if I ever considered being a nurse. At first I thought she was joking, but she was serious. After the year that I have had with Mattie, and experiencing the beauty, compassion, and skills of our HEM/ONC nurses, Mary's comment meant a great deal to me. Mainly because I feel nurses are very special people who are not afraid to walk with their patients and families through some of the most frightening journeys life has to offer.
When I arrived home, Peter was with Mattie. They are quite determined with this Taj Mahal Lego project. While they were working, I served a wonderful home cooked dinner outside on our deck. We want to thank the Cokers! Thank you Carolyn for a fabulous pork tenderloin, fresh corn, and yams. Mattie actually ate dinner! Corn and yams are two of his favorite things. Mattie also loved the gummy worm cupcakes, and how did you ever know I love chocolate covered strawberries? What a special treat. Peter and I thank you for the Champagne and toasting our wedding anniversary! So thoughtful. We haven't shown the Lego gift to Mattie yet, but no doubt he will love it! Thank you for your continued support and your generosity!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a tough day on Thursday. Mattie is clearly angry, frustrated and exhausted. If you put yourself in his position it is pretty overwhelming. He has been in treatment for more than a seventh of his life. It is painful, overwhelming, it makes him different and unable to do what he likes to do. For children, life is now; they live in the present, not the past and not the future, so for Mattie, it all looks like this and that is sometimes too much to bear. Somehow you and the therapists have to help Mattie understand it will not be like this forever; that there will be an end to the treatments (chemicals) and that once he has learned to walk and gotten his skills back, that the physical therapy will also end. Understanding that treatment will be completed is a process but one that I think needs to happen for Mattie to begin to heal emotionally.I love how you wear your educator "hat" no matter what environment you are in. You saw a play that would have left most of us speechless or worse and you said, what is needed is a post play discussion group. You turned it into an educational experience and I now have another good lesson from you-- not to shut down on something outside my comfort zone but to find a way to make it educational for myself and anyone who might be with me. You continue to touch a chord in my life and that of others who read the blog."
Posted by The Brown Family (DC) at 9:47 PM

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