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 13, 2009

Monday, July 13, 2009

Monday, July 13, 2009

Quote of the day: "One of the deep secrets of life is all that is really worth doing is what we do for others." ~ Lewis Carroll

Mattie attended Brandon's 19th birthday party at the hospital today. Brandon's mom and dad, Toni and Jim, hosted a wonderful ice cream party. Literally it was a chocolate lovers paradise. I had a brownie, chocolate ice cream, M&Ms, and caramel syrup. It was a delicious party, and Mattie was thrilled that there were vanilla cupcakes, vanilla ice cream, and even snow cones for him to enjoy. The wonderful treats made the day memorable, but what will stay clear in my mind always was the connections we made today. Mattie had a wonderful time with Brandon and Jocelyn (some of you may recall that Jocelyn cut Brandon's hair a few weeks ago, and she is a young adult with osteosarcoma). Brandon and Jocelyn are very good role models for Mattie, and I admire them both because they truly care about Mattie, and engage him in the clinic, and enjoy playing with him. Mattie did all sorts of fun projects today. He designed some sharks out of large clothes pins, and then Jocelyn and Mattie, chased Brandon around the clinic with these sharks. Mattie used his shark, to bite off Brandon's fingers, a leg, and an arm. By the time Brandon was finished, he was sitting in a wheelchair. Which led to wheelchair races between Mattie and Brandon. Jocelyn was cheering Mattie on.
We were also lucky enough to see Katie and Kathleen, two of our fabulous nurses from the PICU! They came to celebrate Brandon's birthday. We really miss them. It was so special to see them today, and it brings back all the same wonderful feelings to be in their presence. I will never forget my time with them, and part of me can't seem to visit them in C52 when we come to the hospital now. I am not sure why, but a part of me fears that our interactions wouldn't be the same, which is silly, but I always want to remember them and our connections the way they were. None the less seeing Katie and Kathleen today showed me that our connections transcend C52, which was a great feeling.
Mattie, Brandon, Jocelyn, and Jocelyn's sister, Hannah, also designed boats in clinic and then had boat races. Mattie designed a ferry boat, with a wooden car aboard it. Mattie and Jocelyn teamed up, and Brandon and Hannah teamed up. Jenny, one of Mattie's art therapists, was the judge of the race. Mattie revealed to Jenny that he had issues with racing and competing against his "best friend." His best friend being Brandon. Apparently Mattie brought some tears to his ladies today, because they found his loyalty and commitment to Brandon very heart warming. While Mattie was having this boat race, I was on the phone with Dr. Synder, Mattie's oncologist. Before I tell you about this conversation, I would like to share some photos with you from the clinic visit today.

Left: Vicki, Mattie, Katie (one of our fantastic HEM/ONC nurses), and Jocelyn. Notice that Mattie's hair if finally growing back!
Right: Mattie and Jocelyn attacking Brandon's fingers with their handcrafted sharks. Mattie gave Brandon the king crown today for his birthday.
















Left: Mattie and Jocelyn trapped Brandon in the clinic bathroom. Brandon resorted to sitting in a wheelchair because Mattie's clothes pin shark attacked his fingers, legs, and arms!
Right: You can see Mattie excited about the boat races! Naturally Mattie's boat won the race (thanks Brandon!), and Mattie won a prize, a Scooby Doo chia pet! Thanks Jenny and Jessie for the great gift. We started growing this plant today.




















While the races were underway, I chatted with Dr. Synder. She confirmed with me that she doesn't recommend Mattie receive any more doxorubicin, chemotherapy, based on its toxicity and effects on Mattie's heart. In addition to the decreased function in Mattie's ejection fraction and shortening fraction, I also found out today that Mattie's left ventricle of his heart is dilated, which means that it has expanded a bit and therefore fills more with fluid than it should. In addition, because of the extra fluid, not all of it can get pumped out. So in essence it is expected that Mattie will experience the following symptoms as he becomes more physically active: fatigue, shortness of breath, and dizziness. At the moment, it is hard to assess for these things because he isn't that mobile, but as he starts moving around, these issues may arise, and then we will have to figure out how to treat them, most likely with heart medication. In addition, it isn't clear if Mattie's heart function will continue to decline or whether we have reached a plateau. This is a bit daunting, because we just do not know what the future holds. I also feel as if Mattie would benefit from receiving more chemotherapy, but we are certainly not entertaining this because it would have a major impact on Mattie's heart. Dr. Synder has asked me to daily observe Mattie for shortness of breath and dizziness. I told her that this is another thing to add to my long list of observations. Right now, because I am monitoring so many things, I am keeping a spreadsheet on Mattie's status day to day!
Mattie and I said our good-byes to Brandon and his family, and Jocelyn walked down to the physical therapy clinic with us. Mattie was very proud to show Jocelyn what he is capable of doing, and Jocelyn showed great interest. In fact, Mattie recommended Anna as a PT to Jocelyn. Mattie told Jocelyn today that Anna is "the best!" I concur! I think Anna is working VERY well with Mattie, and I attribute this not only to her skills, but the fact that she developed a solid relationship with Mattie over the past eight months. I snapped some great pictures of Mattie in motion today.
Left: Mattie held a bat today and was whacking a balloon. He was stretching out his arms and really working hard.
Right: Mattie and Anna did some stretching together. Mattie can lift his left arm so it is at an 100 degree angle with his body. The goal is to get it to 180 degrees (ie, straight up over his head), but this is definite progress. In addition, Mattie's right leg is at a 30 degree angle, with the hopes to get it completely straight, or zero degrees.




















Left: Anna introduced Mattie to the parallel bars today. I was not sure how he was going to react to this, but he complied and walked across, bracing himself with his arms.
Right: Mattie crossing the finish line!











Mattie and I headed home and had a quiet afternoon together playing. When Peter came home, he and I had dinner outside, but Mattie refused to join us. Mattie's eating was a little better today, but still not great. We want to thank Eva Katcher for a lovely dinner! Thank you for your continued support! After dinner, I had a professional conference call to participate on. Not sure how I managed that, but I did. When the call was over, I could tell that Mattie and Peter were having a disagreement. So I went downstairs to find out what was going on. Mattie shut down, and was hysterical. Peter tells me that one minute they were playing and the next minute Mattie seemed angry and lost control over his emotions. Some how I am not surprised. Mattie is still in a very fragile place, which makes disciplining him and rationalizing with him like we used to ineffective. As we head into Tuesday, Mattie has an appointment with Dr. Biel, his psychiatrist, and then followed by his physical therapy appointment. Another full day at Georgetown. So though we don't live at Georgetown Hospital anymore, I still feel like I am very immersed in it.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always, there is a sense of sadness that clearly permeates your lives right now. Throughout the blog there is a sense of longing for the way things were before the cancer that shows even through the positive things that do happen. I was glad to see that Mattie is becoming more comfortable with Independence and that you and Peter are taking advantage of the opportunity to reconnect with each other. I know how much doing for others means to you so I was happy to see that you had the opportunity to check in and spend some time with Ann's parents as well. I hope at some time in the near future, these opportunities become so routine that they are no longer remarkable and are once again a normal part of your lives."
Posted by The Brown Family (DC) at 9:12 PM

1 comments:

Anonymous said...

Hi, you don't know me but I have been following your website for quite sometime now. I just was wondering if you have ever been made aware of the service respite? I am a respite worker and I relieve parents who have children with disabilities or illnesses. They give you a certain amount of hours a year, and you can leave the house for a few hours to go do something, or to relax. Considering Mattie's situation, I would think he would qualify. I wish you all the best with your son and I am praying for him.

July 15, 2009 8:53 PM

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