Saturday, July 23, 2016

Saturday, July 23, 2016 -- The 8th Anniversary of Mattie's Diagnosis

Tonight's picture was taken on July 23, 2008. A day Peter and I will NEVER forget! I took Mattie to the pediatrician that day because he had been complaining of arm pain. I thought at worse, he strained a muscle. It would have never crossed my mind that the pain was caused by a massive tumor growing in his arm! Though Mattie had NO idea how profound a diagnosis he was given, he understood that something was very wrong. That same day he asked whether we could decorate our deck for Christmas! Mind you it was July! Under normal circumstances, I most likely would have said NO to this request. But when your child has cancer, your whole mind set changes, as do your priorities and perspective! So Peter and I pulled out all the outdoor lights and decorated. As you can see Mattie was in my lap for this photo. When Mattie was scared and overwhelmed, this was the position he always took..... no matter his size!


Quote of the day: I only miss you when I’m breathing. ~ Jason Derulo

Typically I am NOT a Facebook fan, but it is on anniversary dates like today, that I typically post a photo about Mattie and our lives together. I do this for many reasons, one of which is to remind people that Mattie existed and Peter and I are STILL living with his loss. Mattie's death will always be a part of us, and though the world would like to think things are fine and TIME HEALS ALL WOUNDS. Well I can safely say...... IT DOESN'T and I would contend those who are honest will admit to you that things DO NO get better after year one of the loss. They instead get more complex and emotional and that is typically when one's care community stops with their support. Which further compounds such a significant loss. 

We have a friend whose daughter has been ill for quite some time. Over the course of this week, I connected this family with Dr. Shad (the oncologist who assisted Mattie when he was dying). 

Today Peter and I drove to Baltimore to visit this young girl and her mom in the hospital. I am very sensitive to caregivers of children who are hospitalized and know how important it is to receive a care package when visiting. 

So today I brought goodies for both mom and daughter. 

The goodies were vast from a "thinking of you" balloon, to all sorts of food goodies, a frappuccino, candy, an adult color book and crayons, and hair ties. 

When I went to purchase the balloon this morning from our local florist, I was telling him about the young girl I was going to be visiting today. He was so taken by this story, that he gave me this beautiful piece of bamboo to give to her for free. He wanted to wish her health, strength, and courage. Isn't that a beautiful and meaningful gesture?

Despite his young girl being ill, she bestowed on me this beautiful MOON thank you card! Which meant a lot to me. 

This was the outside of the envelope of the card! Very clever!!!

After our hospital visit, Peter and I went out to dinner at a restaurant Mattie loved. He loved it because a toy train goes around the periphery of the restaurant, along a ceiling track. Can you see the train above on the track? This would have been a thrill to Mattie. 






I am reposting below the blog from July 23, 2014. It details Mattie's diagnosis day! I think it says it all................

On the anniversary of Mattie's diagnosis, it seems appropriate to reflect on the day that he was diagnosed. Two weeks before diagnosis, Mattie was enrolled in a tennis camp with his friend, Charlotte. In fact, I always credit this camp for identifying the issue before Mattie broke a bone, which is a very typical way kids with osteosarcoma are diagnosed. Mattie had never played tennis before, so it seemed very plausible that he injured himself in camp. Mattie complained of arm pain and he was having trouble lifting his arm. He couldn't lift his right arm over his head at all. While he was in the second week of camp, I had to attend a conference in San Diego. So I flew out to San Diego and Peter took off of work to spend those days with Mattie. It was during that time, Mattie and Peter designed two garden fountains for me for my birthday. Gifts that are precious and priceless to me and I still use them today! In fact while I am writing this book chapter this summer, I have the windows open to listen to Mattie's fountains!

While I was at the conference, I would call home daily. Peter would give me a report about Mattie's arm. I did not like what I was hearing and knew as soon as I got home, I was taking Mattie to the pediatrician. Which is literally what I did. I got home on a Saturday and on Monday, I took Mattie to be examined! Fortunately Mattie had a great pediatrician who took us seriously. Because the number one reason children's cancer metastasizes at the time of diagnosis is because it isn't detected early. Pediatricians are not used to screening for childhood cancers, and it is understandable because it is rare. After all, for example only 3% of children in the US are diagnosed with osteosarcoma, the kind of cancer Mattie had!  

Mattie's doctor sent us for an xray that day. Since Mattie never had an xray before or any kind of scanning, he was NOT afraid of the process at all. He hopped on up and complied. However, I was with the tech behind the glass partition and I could tell he wasn't happy with what he was seeing which perplexed me. He just kept taking xrays. But again, I thought nothing of it. He then escorted us to a holding room, which had other people in it, all adults. While in the room a phone rang. None of the other patients answered it, so I went over to get it. The person asked to talk to Mattie's mom, which of course was me. On the phone was the radiologist who proceeded to tell me that something was found on the xray and I had to go back to the pediatrician's office. But I did not like his tone on the phone, so I told him I wasn't leaving the room until he told me what he saw. It was at that point on the phone, in front of a group of strangers, that I heard Mattie had osteosarcoma. With Mattie watching me no less. 

When he told me Mattie had osteosarcoma, I had no idea what that meant, so I asked him for clarification. He told me it was a form of bone cancer and I asked him about treatments. Again, he was sketchy and told me to go see Mattie's doctor. I kept calm for Mattie's sake and somehow found my way back to the doctor's office with Mattie in tow. I then text messaged Peter to come to the hospital. Mattie's pediatrician seemed upbeat about the prognosis and treatment, while I felt my world was crashing in on me. Of course what she did not know at the time was this was only one of many primary bone tumors that Mattie had. With additional scanning, we learned that Mattie had a bone tumor in both arms, his right leg, and his left wrist, making Mattie's case HIGHLY unique and very rare.  

This may have occurred six years ago today, but for me, it may have happened yesterday! The details are very clear in my head. As I imagine anyone's cancer diagnosis day would be!