Mattie Miracle Walk 2023 was a $131,249 success!

Mattie Miracle Cancer Foundation Promotional Video

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!

A Remembrance Video of Mattie

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."

1 comment:

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.