Mattie's Blog and his Fight Against Osteosarcoma

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten 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 Childhood Cancer!

December 24, 2012

Sunday, December 23, 2012

Sunday, December 23, 2012

Tonight's picture was taken on December 5, 2002. This was third in a series of photos I have been showing the past couple of nights on the blog! One of the things Mattie loved to do in his saucer was dance. So I entitled this photo, The Dancing Santa Mattie. Needless to say this photo wasn't featured on the front of our Christmas card in 2002. However, as I look at this photo, I would like you to notice Mattie's nose. I always loved the part of his nose by his nostrils, because looking at his nose at this angle, it always looked like an upside down heart to me!

Quote of the day: Hope in the beginning feels like such a violation of the loss, and yet without it we couldn't survive. ~ Gail Caldwell

Last night, a close friend of ours sent Peter and I the email below. It is funny how such a message from someone who has walked the Mattie battle with us can make such a difference in our lives. What is the best way to wish Peter and me a Merry Christmas and a Happy New Year? I don't know, since I have NO personal experience helping a friend through the loss of a child. I am learning how to manage the experience for myself and therefore it is sometimes hard to let others in who want to help us. But what I do know is that receiving this message somehow made me feel as if a friend got it, understood what life looks like for us now especially during the holidays, and wasn't afraid to write it. She also knows how I am moved by music and sent me the song below to let us know we are not alone. Four VERY powerful words. The message we received said............................

"Have you heard the song, “Christmas Card,” by Steven Curtis Chapman? Maybe I’m the 1000th person to tell you this, but I heard this beautiful song and wanted to send it to you. The song is about seeing someone at Christmastime, who is clearly suffering. It says, “I’m sending you this Christmas Card to tell you somebody loves you.” It was so beautiful, it made me cry and made me think of you guys immediately. What surprised me more, was when I just went online to research the artist. Turns out, he lost his five year-old daughter almost five years ago — tragic car accident where his older son accidentally ran her over. I guess that’s why he was able to capture your feelings so well. Long way of saying, I am thinking about you during these incredibly difficult holiday times. And, wanted you to know that you’re not alone!"

http://www.youtube.com/watch?v=3JlViVua1bM

Today was a busy day of trying to begin preparations for Christmas dinner. My parents are having several friends over to their home on Tuesday and such a dinner requires thought and staging. Before I had Mattie and even when I was raising Mattie I did a lot of cooking. Cooking for lots of people. If you know me well, then you know that I LOVE food and LOVE eating! To me it is an art form and as such I also love to cook. Yet while Mattie was battling cancer and after he died, my cooking has been curtailed. I no longer have people over to our home and I no longer cook dinners for people. I am not sure why, but I suppose Peter and I don't feel like we are in the entertaining mood. So what I am saying is cooking on this magnitude is not something I have done for years.

This evening we got out of the house for a while for a change of scenery. On our drive back to my parent's house, I started snapping a few pictures of holiday lights. What is fascinating about this house is the mailbox. It is automated. It opens and closes on its own and it reminded me of the North Pole based on how it is decorated with red and white stripes.

This house was literally ALL aglow. You can see it from down the block!

Santa is taller than the house and practically begs you to stop the car and check him out.

Because my parent's neighborhood is in the hills, it was nicknamed years ago... Starlight. Mainly because you can see the stars so clearly from up here. At Christmas time many of the houses display HUGE stars on their front lawn. I tried to capture three houses in a row with such stars!

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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.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

A bill, sponsored by Rep. Speier has been introduced in the House on April 27, 2009, to improve and enhance research and programs on childhood cancer survivorship. For more information, please visit the link below
http://www.govtrack.us/congress/bill.xpd?bill=h111-2109

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.
http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Situation

Mattie Had Bone Cancer
Mattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children.

Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.

Mattie's Blog... When Tragedy Inspires Hope

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Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

A Remembrance Video of Mattie

December 24, 2012

Sunday, December 23, 2012

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