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 21, 2017

Tuesday, March 21, 2017

Tuesday, March 21, 2017 -- Mattie died 392 weeks ago today.

Tonight's picture was taken in March of 2007. Mattie was almost five years old here, and in preschool. After school we spent time out on the deck and as you can see Mattie captured all the snow that fell and made little castles with it! This was classic Mattie, because after building with sand or snow, he always wanted to decorate his creations. Usually with something found in nature.

Quote of the day: The only thing that overcomes hard luck is hard work. ~ Harry Golden

Mattie Miracle wrote a psychosocial chapter for a sarcoma book about a year or so ago. Now that the other authors have finished their chapters, the book is set to be published this year. Very exciting because all the other chapters are on medical care, which is why this psychosocial chapter is such a crucial addition. In any case, I spent several hours proofing this chapter, and since it was written about a year ago, several things needed to be updated as it related to the Psychosocial Standards of Care. Once the book comes out, I will try to share my chapter with my readers.

Meanwhile, Sunny and I went for a walk this afternoon. He chased a squirrel right up the tree. You can see him in the center of the photo.

Sunny waiting for the squirrel to come down!!! If I did not hold Sunny tightly on the leash, there would be many dead squirrels in our neighborhood!

This was the sight in our kitchen today at dinner time. Who says cats and dogs can't be friends? I really think these two enjoy each other's company at meal times.

1 comment:

Margy Jost said...: Vicki, I was scrolling down before I closed my IPAD to get ready and saw the picture of Mattie with his snow castles. I look at all of his pictures through a lens of disbelief. The disbelief comes from just how alive & healthy the pictures, of course, show him to be. It is an absolutely precious Mattie picture. I hope it is one you have framed!
Hard work is often the only thing that saves one from despair!

I am so glad you are Sunny's forever home. He looks like a very loved dog! I hope I get to read your chapter in the Sarcoma book; March 23, 2017 at 8:16 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 21, 2017

Tuesday, March 21, 2017

1 comment:

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