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 me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.

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

March 25, 2017

Saturday, March 25, 2017

Saturday, March 25, 2017

Tonight's picture was taken in July of 2002. Mattie was three months old and sitting in his favorite place.... his car seat. Don't ask me why Mattie loved his car seat, but he did. He preferred it over a stroller and don't get me started about a crib. Mattie HATED his crib. He despised it so much that for the first several months I put the car seat in the crib and let Mattie rest in his car seat/crib! What I love about this photo, was Mattie's dreamy look. A look that he always got right after a bottle.

Quote of the day: Spring is the time of plans and projects. ~ Leo Tolstoy

Tolstoy was absolutely correct. Today was 80 degrees in DC. We had the windows open, we opened all the boxes that came to us for the toiletry drive, and then I got inspired to have us work on cleaning our deck and getting it ready for spring. In addition, we moved all our plants from inside to out. So between the clean out and migration of plants, we were at it for HOURS!

I ordered Sunny a Sherpa type crate liner for when he boards next week. As soon as I took it out of the packing box, Sunny walked to it and claimed it! I am glad he likes it and hopefully it will remind him of home while we are away.

This is the final product after hours of clean up. Between picking up leaves and debris, our perennials needed to be cleaned out and cut back. Then of course everything needed to be hosed off. We went through about four or five garbage bags of debris!

Last year, we bought a canna lily. Since last year, the plant has grown exponentially. It has been inside all winter, but now it is thrilled to be back outside.

1 comment:

Margy Jost said...: Vicki, I love the look of Mattie in the picture! I always called, this the " food coma " look. After they have had a satisfying meal, as sleep settle into them, they get this dreamy look. I love it!! It was smart of you to put the car seat in his crib. Truthfully, I would never have thought of this!!!

All those pots on your deck, that I know will be brimming with flowers soon. You definitely have a green thumb. I am not so successful with a garden. Fortunately Ken is. Although last year, I chose a plant for Kimber so we made our whole garden, Kimber's garden with rocks and seashells. We plan to do it again!

I am glad Sunny liked his special blanket. I feel badly this is your option because I know you would rather not have to do this. I am glad you eased him into going there.

I keep thinking about the Cart at Sinai. How excited, the children were! When. I used to visit kids on the hospital unit before the office got so big and it was harder to go for quick visits, I always filled my pockets with those small bubble gifts on a string. They could wear it around their neck and open up the container and blow bubbles. This was especially important for the kids who were recovering from surgery. To help clear their lungs. I had heart, star, circle and regular kind of bottle in my pockets. Watching the Child Life person even know what some kids would want was the best testimony of how well, she knew her patients. I will long remember this day💖; March 26, 2017 at 12:35 AM

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.

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

A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

March 25, 2017

Saturday, March 25, 2017

1 comment:

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