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

June 19, 2009

Friday, June 19, 2009

Friday, June 19, 2009 -- The Positive News for the Day... The pathology report came back from Mattie's lung surgery and it revealed negative margins around ALL the tumors and there was no evidence of disease in the pleura. Keep reading for more information!

Quote of the day: "In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything. You just need a lot of love and luck - and, of course, courage." ~ Bill Cosby
Last night before I headed to bed, I received an e-mail from Ann. Ann's daughter, Abigail, and her friend, Jackson, created a "wish fountain." I was very touched by the care, concern, and thoughtfulness of these children. Ann wrote, "Abigail and Jackson have made a "wish fountain" for Mattie since they are sad he is in the hospital. They have created this tube structure and they are selling wishes on the front lawn. When a person puts money in the wish fountain, they sprinkle magic fairy dust (grass pulled from the lawn) on the money in the tube and that guarantees your wish will come true. People have been impressed with their creativity (or are just impressed with their salesmanship!) and so far they have made $8.05 for the Mattie Fund. I put my 25 cents in and I had a specific wish for Mattie which I am now sure it will come true!!"

Left: I introduce you to the wish fountain!

Today was another big day for Mattie. All of his IV pain medications were discontinued. I was a little nervous about this, but Mattie handled this transition like a champ. You have to admire how strong and courageous this little body is! Mattie is now on a Fentanyl transdermal patch and Roxicodone (an oral pain medication). Before Mattie's epidural came out this morning, we were visited by Susan DeLaurentis, Mattie's Director of School Counseling at SSSAS. Susan brought Mattie some wonderful Sponge Bob gifts. I added Susan's gifts to Mattie's treasure chest, which he turns to after he completes his respiratory exercises. Thank you Susan for thinking of Mattie, for the coffee and tea, but especially for the walk outside in the sunshine and the opportunity to chat. Susan has been incredibly supportive of Mattie and my family this year, and though today was a work day for her, I appreciate her taking the time to visit us and for getting me to laugh about so many things! I spoke to Susan about how I can't see my life every being normal again, and I don't say this lightly. In a way Mattie's illness is a profound loss and living in a hospital for almost a year now, has made me not only unsure of how to live my life, but I almost feel as if my former life has ended and now, like an old science fiction movie, my body has been snatched up and I am forced to live life in this transformed state.

When I got back to Mattie's room, Peter was with the pain management team, as Mattie's epidural was removed. The removal was easy and painless. Thankfully! Mattie's oncologist, Dr. Synder has visited us every day this week. I really appreciate her support and her energy. Soon there after, Linda arrived and behind her was a huge Sponge Bob balloon (the balloon behind Peter in the picture). So now we have two enormous Sponge Bob balloons in the room and Mattie loves it, and well you know where I am with Sponge Bob! In the picture you will see a few assembled Lego sets on Mattie's bed. Sponge Bob Legos to be specific. Peter and Mattie were playing out a scene as Sponge Bob and Patrick. In fact, Peter is pretending that he doesn't know that a huge Sponge Bob balloon is behind him and he is trying to ham it up, meanwhile, Mattie is laughing because clearly he can see the balloon is on Peter's shoulder, but Peter is acting like there isn't a balloon at all in the room. They had a good time goofing around with each other.
Around lunch time, Jenny and Jessie (Mattie's art therapists) came up from clinic to help Mattie build a Father's day gift for Peter. While this was taking place in Mattie's room, Peter was able to go off campus, and head to our home to pick up some medications for Mattie (medications in a wafer form that the hospital pharmacy doesn't have access to) and also stopped to pick up more Legos for Mattie. I also left the room and waited in the hallway, because after spending five days in this room, I needed a change of venue. While in the hallway, I met up with Dr. Chahine, Mattie's lung surgeon. In fact, today alone Dr. Chahine visited Mattie two times. I can't get over this surgeon's level of commitment to his patients. The ironic part is I interrogated Dr. Chahine in a consultation meeting, when we were deciding which surgeon to select, about his post-surgery follow up with his patients. I wanted to make sure his style wasn't to perform the surgery and then never see him again for the recovery phase (The recovery process is just as important to me as the surgery. I feel Dr. Bob spoils us, because it is eight months after surgery and Bob immediately responds to my concerns and e-mails always!). Dr. Chahine assured me in the meeting that he pays close attention to follow up. However, he was very modest in his answer to this question, because I feel like he has been there every step of the way with us, and I think he gives great thought into the treatment and care of his patients. We made the right decision to stay at Georgetown, because as you know we want NO regrets about our decisions we have made about Mattie's treatment! You may find it interesting to know that Dr. Chahine is a blog reader. This tells me a lot about his character and commitment.
Dr. Chahine told me that he is very pleased with Mattie's recovery. That the lungs are healing nicely and though there was some air within the chest cavity which showed up on the earlier x-rays, there is nothing there now. The surgery was a success! Music to a parent's ears. Dr. Chahine and I discussed a time table for Mattie's discharge and he also confirmed for me that Mattie wouldn't need a hospital bed at home. Fabulous!

I want to thank the Keefe family for dropping off a wonderful lunch today. There isn't a morsel left. Thank you for all the wonderful fresh salads and fruits! Mattie LOVED the watermelon and his new Sponge Bob plate set. Thank you Debbie for visiting and for your family's continued support!
When I got back into Mattie's room, Peter's gift was made and already wrapped up! Mattie was looking at some electronic father's day cards with Jenny and Jessie on the computer. In the picture on the left you will see Mattie, Jenny, and Jessie smiling at an electronic card on the screen. After their computer time, Mattie and I did some more breathing exercises using Brenna's Sponge Bob Lake. As you can see in the picture, I am trying to blow on the character named, Patrick, who is floating in a plastic cup boat. Mattie's Sponge Bob character already crossed the finish line! So naturally I was losing the race, and was still at the starting line, while Mattie had already finished blowing. Of course this only motivated Mattie to further race me, and make me look even more humiliated.



Linda snapped a wonderful close up picture of Mattie while he was blowing through a straw to ensure that his Sponge Bob character won the race. Later in the afternoon, Peter came back from running chores, and Mattie couldn't wait to give Peter his father's day gift. So I snapped a picture of this happy twosome. Mattie designed a boat for Peter out of a cardboard box. It is an impressive boat, with a lovely card attached! Thank you Jenny and Jessie for helping Mattie with this special project.

















Mattie and Peter worked on a Star Wars Lego for part of this afternoon, and I gave them their time together, while I did what else, laundry? Of course maneuvering to the parent lounge now is like an obstacle course because of the new security measures they put in place on the floor. Despite the hassle, it definitely is a system that looks out for the welfare of the children. In addition to everything else Mattie had to deal with today, Mattie also got an infusion of MTP-PE. True to form, 30 minutes after the infusion was over, he had a negative reaction with a fever and rigors. Dr. Gonzalez was the attending HEM/ONC physician and she ordered demerol for Mattie to counteract the reaction. It took longer today for the demerol to actually work, and Mattie landed up shaking like a leaf for longer. He eventually went to sleep though, and rested for about 90 minutes. It was during this time that Dr. Gonzalez spoke to me about Mattie's lung pathology results. Dr. Gonzalez made sure we had the results by today, rather than waiting throughout the weekend. I appreciated that thoughtfulness.
Dr. Gonzalez told me the news was good from the report. It turns out that the pathology did confirm that seven of the nine lesions were indeed osteosarcoma. The other two are too small and still need to be studied. Well that news that the lesions were osteosarcoma did not surprise us, but the positive news was that the tumors removed ALL had negative margins. Which means that NO cancer is found in the tissue surrounding the tumor that was removed. So in essence all the detectable cancerous material was removed. Excellent news. In addition, no cancer was found in the pleura. The pleural cavity is the body cavity that surrounds the lungs. The lungs are surrounded by the pleura, a membrane which folds back upon itself to form a two-layered structure. The thin space between the two pleural layers is known as the pleural space; it normally contains a small amount of pleural fluid. The outer pleura is attached to the chest wall. The inner pleura covers the lungs and adjoining structures, i.e. blood vessels, bronchi and nerves. So this is an additional piece of good news, and if we have learned one thing this year, is you EMBRACE whatever good news is bestowed upon you with Osteosarcoma!

We want to thank the Kane family for a wonderful dinner tonight and for supporting us this week through surgery. Later in the afternoon we were transitioned off the PICU service and back to the HEM/ONC team. This is excellent news for Mattie, because that means he is stable. I feel like Mattie has received excellent care this week, and I am grateful for the efforts being made.
Mattie was scheduled to have physical therapy today, but it never happened because Mattie was too ill from the MTP infusion. Mattie has done several breathing exercises, and though he doesn't want to do this, we are trying to impress upon him the importance to be a part of the recovery process. Unless Mattie starts exercising and taking deep breaths, we will be unable to leave the hospital. Mattie is still on oxygen at this point.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Clearly Thursday was a one step forward and two steps back day. Mattie is making progress on physical measures but has definitely done a backslide on his emotional/social side. This is not unusual for either an adult or a child after major surgery. It sounds like Mattie is feeling both physically and emotionally vunerable right now and pushing people away as a result. Even before the surgery Mattie was beginning to develop some sensitivity about how he looks and no one wants people outside of their family to see them when they are uncomfortable about that. I have seen adults refuse to see their spouses or friends when in that situation. Mattie is in a hospital gown again (by necessity with all those lines and tubes) but it can make one feel ugly and vulnerable unlike one's own clothing/pajamas which are comfortable and in which the child often had a choice. I know you are feeling lonely and isolated and others may feel frustrated because they want to come and support you but those who are friends and who have been a part of this from the beginning will see the familiar pattern here and know that Mattie will come out of his "shell" and the company of familiar friends and family will once again be welcomed. It is important for you to do what you can to take care of yourself until that point."
The second e-mail is from my friend and colleague, Denise. Denise wrote, "As I was reading the blog, I was reminded once again of what an incredibly intuitive little guy Mattie is. I hear your sadness and frustration as Mattie appears to push people away. What comes to mind to me is that in his wonderfully creative 7 year old way, he is allowing himself to use all the energy he can muster for his healing. It is as if he is saying-hey guys-I've got a big job to do here and I cannot "do distraction" right now. I cannot imagine how difficult this time is for you and Peter, as well as Mattie. The one thing you do know is that Mattie does come back and connect and we all saw that on the blog. Right now he reminds me of a little kid learning to write-remember how the tongue comes out as we focused really hard. He is focusing really hard to fight the "bone bugs." Thinking of you all and praying that this time will pass as Mattie heals from the surgery and can use some of his healing energy to connect once again."

The third message is from my mom. My mom wrote, "I KNOW that "rejection" hurts and is very painful and hard to handle when it is happening to you. Blame it on the devastating long term effects of his illness, the horrible interaction of powerful meds and the unnaturalness of his living his childhood cooped up in a PICU cubicle and it all makes perfect sense. He has endured unimaginable horrors that would cause normal and stable adults to crack up. All these factors combine to create a life of "childhood torture" and the perfect recipe for antisocial behavior. It is the only way he can release the anger and frustration he feels living in the agony of constant pain. When he has the chance to heal and grow strong, he will shed this "dark" side and emerge like a butterfly from his melancholy state and we will have our dear Mattie back again. Now however, there is to be more chemo. It is wearying to think about much less to imagine what additional punishment to body and MIND Mattie will have to endure and what lies ahead. It is hard to contemplate that he must endure another test of his physical limits but it is the price to be paid to save him from the ghastly scourge of osteosarcoma. You must never FORGET the main objective in spite of the pitfalls and the rocky terrain. You NEED to climb that mountain to get on the other side. You are strong and very insightful and have learned to reconcile your hope for Mattie's success in winning this battle with the temporary setbacks and unexpected shake-ups that occur along the way. Stay focused on the goal and NEVER take your eye off the ball. You have already come very far. Remember, he is counting on you even when he lets out his angst on you. He knows it's OK because you have NEVER and will NEVER let him down no matter what. HE KNOWS THAT AND HE KNOWS YOU KNOW THAT TOO!"

1 comment:

Anonymous said...

We are so happy to hear the encouraging pathology report. It just proves that the combination of Mattie's strong will, the surgeon's skilled hands and perhaps thousands of prayers have the power to reverse a hideous disease. Love, Jennifer O.