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

May 2, 2009

Saturday, May 2, 2009

Saturday, May 2, 2009

Quote of the day: "You have it easily in your power to increase the sum total of this world's happiness now. How? By giving a few words of sincere appreciation to someone who is lonely or discouraged. Perhaps you will forget tomorrow the kind words you say today, but the recipient may cherish them over a lifetime." ~ Dale Carnegie


Last night was a decent night for Mattie, as I sent Vicki home around 6pm to go home for a much needed decompression from life in the PICU for a few days. Because of my work demands, and the ten months of accumulated fatigue, sleep deprivation and depression, neither of us can maintain a full-time caregiver schedule anymore for Mattie. Up until last month, most times, both of us would stay in the hospital with Mattie each night he was getting chemotherapy or was neutropenic, as Vicki and I supported each other when tending to Mattie. However, we are both beyond the breaking point, so we forced ourselves to make a change in our coverage schedules.

I had made an impromptu stop at Toys-R-Us Friday before arriving at the hospital to stock up on my bag of tricks, since Mattie was starting to feel better, which means his "appetite" for playtime and new things only increases with each passing moment. Mattie can go from morning through midnight constantly playing, and it's not the kind of play where he can entertain himself. So having new things in the old bag of tricks is essential when going one-on-one with Mattie in a small PICU room. Mattie and I played until midnight assembling a magnetic dinosaur, putting together a 3D Scooby-Doo puzzle, and building a Lego combine harvester (a piece of farm equipment). A little after midnight, I called the end of play, and Mattie chose to switch to a Backyardigans DVD to fall sleep to. I jumped in bed and around 12:40am Mattie woke me up to turn off the DVD player.

Other than the usual "up-every-two-hours-to-pee routine" it was an uneventful night (that is uneventful for living in a PICU environment). Around 8:15am, Tricia came in the room to check in on Mattie, and I got it moving with a cup of instant coffee and a mug I keep in our cases of materials. After cup number two I started coming out of my daze a little. Mattie was still asleep so I made the most of the time to return emails, update my tracking spreadsheets for Mattie's march registrations, and worked on finalizing the Program for Mattie's event. I also had the chance to periodically catch up with Tricia. As many of you know Tricia is yet another one of the special Hem/Onc nurses who have lived through the thick and thin of things with us over the last ten months. She is another member of our family as are most of the Hem/Onc nurses now, whether they want to be or not. Because I work during the weekdays and leave by 7am and return after 7pm typically, I rarely get a chance to see all the nurses who usually work the day shifts who I got to know so well back in August when Mattie started chemo. So, it's always nice for me to see these nurses again and to catch up with them.

During the morning, Dr. Toretsky was the in-patient doctor this weekend, and Jeff had been signaling to us on Friday that Mattie would probably clear some time on Saturday in which case we would be discharged. So starting Friday Vicki got the wheels moving to get us home hydration fluids and Kytril delivered on Saturday. After several phone calls and coordination with Kim from OptionCare (our home health products provider), we locked into a plan. Kim is fantastic and has really saved us several times and is always willing to go the extra mile to take care of us. In addition to coordinating with Kim, I asked Jeff to move up the blood draw since I know it can take up to 6 hours to get lab results back for the Methotrexate level. Jeff was going to draw at 5 or 6pm on Saturday, so I asked him to move it up to 2pm so that we had a chance of getting home at a reasonable hour. I suspected that Mattie would clear by then, and fortunately he did so we got to go home.

So sure enough, Mattie's blood draw at 2pm today returned around 5pm indicating that he had cleared and was ready to go home. Meanwhile, I had to coordinate closely with Vicki who was running all sorts of errands including a much deserved and needed trip to the salon. The challenge we had was that I did not have my car at the hospital, so Vicki and her parents came over around 5:30pm and helped me carry our things down and load the car. I had spent the morning packing up the room so that all we had to do was carry things out of the hospital.

At 6:00pm we were loaded up, and Mattie and I drove home while Vicki and her parents went out for a nice dinner. By the way, Vicki reported to me tonight that when they entered the Clyde's they saw an advertisement for Mattie's March, so clearly, there is no place Team Mattie members cannot get to! They had a nice dinner, meanwhile Mattie and I continued to build Mission 6 of the Lego Agents series, which is a seemingly innocuous looking semi-trailer truck filled with secret agent gadgets, equipment and vehicles. Both my fingers and posterior (from sitting on the floor) were numb by the time we were done. But, Mattie had fun and is presently playing with the set, so it's safe to say that it was a successful mission!

This week the registrations for Mattie's March on May 9th continue to come in as well as donations to Mattie's fund. It is quite exciting for us to see the outpouring of support for Mattie and us. Thanks to all of you who have registered and who are working to make this a special event for Mattie!

This week I have also been meeting with some organizations focused on developing treatments that address specific pediatric cancers. As I have mentioned before, I have committed the remainder of my days on this earth to raising the awareness of Osteosarcoma and for developing better treatments and a cure for this horrible, horrible disease. Thanks to friends, I am making in-roads and starting to learn more about how things operate in this area. I intend to have a plan developed by the end of the summer that maps out what we are going to do in this area, so stay tuned.

I also want to promote something else in time for Mother's day. The Dana Farber Cancer Institute (DFCI) and the Jimmy fund have been helping cancer patients now and performing miracles whereever possible for over 50 years. Once again this year, DFCI and the Jimmy Fund are running a promotion for online e-cards for Mother's Day. For as little as a $5 tax-deductible donation, you can create an e-card for Mother's Day and schedule a time for it to be sent to your recipient's email. On the blog, on the left-hand side towards the top you will see a blurb about this and links to take you to the site. It's another nice way to say happy Mother's Day and to help a great organization fight the cancer fight.

I close tonight with some thoughts about the status of our fight against Mattie's cancer. We are almost done with the scheduled chemo and the May 11th admission will be the last for now, even though Mattie will continue to get the experimental drug into September. Many people upon hearing this are happy for us since it seems like the end of a ten month period of an awful, awful existence. In reality, I think both Vicki and I are really scared about this transition. For ten months now, we have grown into a certain level of comfort (or rather been desensitized) because Mattie has been on chemo, which means we have the best agents available coursing through his body almost every week, seeking out and hopefully destroying the cancer. The end of treatment raises a question in my mind that I do not believe I will ever comes to grip with and will forever haunt me, which is, "Did we get all of it?"

Osteosarcoma is a particularly devious disease because so long as any of it, no matter how small that amount is, remains in Mattie's body, it means Mattie will get it again. I remember having doubts about Mattie when he was well, thinking things like "will he be smart," "when will he learn to read," "will he be polite" and "will he be able to enjoy sports and physical activity." Faced with what is now our reality, these questions seem trivial. I'm not sure how I'm going to work through all this, as I do not see an end to this. Our battle with Osteosarcoma will be a lifelong battle and one that neither Vicki or I will ever give up on nor do we know of any other outcome other than winning.

Thank you Charlie (a friend of Vicki's) for sending along this message today. Charlie wrote, "I was so glad to see that Mattie had a better day on Friday. One day like Thursday is enough for a lifetime, let alone in one week. It was good to see Mattie up and doing his therapy and I hope he is successful at walking without the support of the walker before the surgery; as well as allowing him to continue his physical therapy, I think it will increase his feeling of control which will be needed with the new surgery coming up. Mattie's gift to you was beautiful and how wonderful that he was able to create it himself; so much more meaningful than something purchased at a store. I think your handling of Mattie and holding him responsible where you can, is absolutely appropriate and will pay dividends for Mattie in the long run. When you commit to something, you should be willing to put forth the effort to complete it if possible; this is as true for therapy as for projects."

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