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

August 4, 2008

Monday, August 4th, 2008

Monday, August 4th, 2008 - We write this from the Pediatric Intensive Care Unit as this is where all Oncology patients stay when they are "in-patient" at the hospital. Mattie had a very long and hard day today, starting first with an IV in the Clinic and then followed by a PET/CT scan, which unfortunately, we were not able to do. Mattie was very traumatized by the IV experience and by his growing awareness and knowledge that something is very wrong with him and that he is going to be spending a lot of time in hospitals. As a result of getting five IVs in the last seven days, the tests and scary machinery, we could not get Mattie to get on the PET/CT scanner table today, and had to lose the testing window.

After that ordeal, we then moved immediately down to Pediatric Day Surgery to check Mattie into Pre-Op, for his double line brouviac insertion (this is the central line). The central line has been nicknamed "sparky" and allows the administration of medications without the need to stick him with an IV each time. The tube exits his skin about mid-way in the center of his chest and the rest of the tubing snakes upwards and enters a central vein in the neck that dumps into the bloodstream just before the heart. The surgery went well and Mattie is recovering well from the procedure. Albeit disconcerting to see tubing extending and hanging unnaturally from your child's chest, I know it is best for him as it will avoid him needing to get stuck every time, and there is going to be a tremendous amount of sticking across the next year.

A piece of bad news was also given to us today as well. Apparently, the bone scan performed on Friday also picked up on some suspect areas in his distil right femur (just about the right knee) as well as the right ischium (inside, lower part of the pelvis). A PET Scan will determine if these areas are suspicious or not, which has been scheduled for Wednesday at 1:00pm (Mattie will get sedation for this scan to ensure it happens). If the areas are suspicious then biopses will likely be needed. Again, the PET Scan will help confirm this and during the PET Scan, they will take CT Scans of all his bones (so no more x-rays will be needed). Best case is these areas turn out to be nothing, at which point we will go back to focusing on just the two arms.

Also today, the Tumor Board held a session, and although we do not attend these meetings, we understand that a group of leading Pediatric Oncology Doctors all get together and have a meeting to review specific cancer cases. Today, only Mattie's case was presented given that his osteosarcoma is very rare when seen in six year-olds and given that it is metastatic synchronous osteosarcoma of the Humeri (meaning the cancer is showing up in the exact same location in the same bone on each side of the body. Several of the Doctors involved directly in his case presented and input, comment and advice was provided. One thing was for certain: everyone agreed that the standard protocol for chemo is the right one knowing what we know now and that we should get going on it. This group will continue to regularly meet and discuss Mattie's case, and both Dr. Toretsky and Dr. Henshaw will continue to reach out to their vast network of experts in their respective areas and will seek most appropriate and effective path to get Mattie well once again.

So, chemotherapy will not start tomorrow but will likely start on Thursday, which represents only a two day lost in time, since the PET scan needs to occur before the chemo begins. Although we have not fully digested nor understand what chemo will entail (i.e. side-affects, issues, etc.), we are trying to prepare ourselves for what will conclusively be a horrible experience. Mattie has been a real trooper through the pain of the last 13 days, but it is starting to get to him. Yesterday, we noticed that Mattie really had started internalizing his situation as he began to get very scared and anxious. We are doing all that we can to address this but unfortunately we do not have the luxury of time on our side, and so we must be quick and precise about the circumstances.

So tomorrow we will work on getting Mattie recovered from the surgery. His incisions will begin to hurt more and we will be trained on how to change his dressings (as we will do this once a week when not in the hospital), change the caps/lids on Sparky and clean Sparky once a day with a three mL shot of Heparin (to prevent the tubes from clotting up and clogging).

Mattie's hospital room is C5205 but we will be moving to another room tomorrow. The room is tiny and between the furniture and hospital bed there is not much room for any other things. Ann Henshaw also visited us tonight and brought over an armload of just some of the things that friends have been giving to her to give to us, so thank you all for your warm greetings and kind hearts.

I think to most unsettling point right now is that we just do not know yet what the full parameters of the situation are and where the cancer exists/has spread to. The faster we can get to that the more we can focus on the other unsettling points like the chemo schedule and surgical options. We will keep you posted on our events this week but we will likely be here through the weekend.

8 comments:

Anonymous said...

Mattie, Vicki and Pete,

We are sending hugs and prayers from California. Our hearts go out to you all - Gabe wishes Mattie will get well soon and come out for a playdate on the beach!

Be strong,
Michelle, Win and Gabe (Gate)

Olivia Kane said...

Dear Vicki and Pete,

I know we don't really know each other, though we are fellow SSSAS parents as I had a kindergartener (Florence in KR) as well last year and I recognize Vicki and Mattie from playground pick up time.

Ann Henshaw shared me your blog and the incredible health and emotional challenges Mattie and you two have been given.

I write, formally, on behalf of the SSSAS APT and the lower school parent community to offer any kind of support to you all that we parents can give - we are ready, willing and able to help.

But, I really write more personally to you this morning as a fellow parent and as a woman of faith. I can't even guess what thoughts are going through your heads right now and what you're turning to for strength or hope. I just want you to know that I will be praying daily for Mattie and for you both - praying for healing, for strength, for hope and for peace.

This morning, as I read your blog, I kept thinking of two quotes from St. Francis de Sales. He inspired the religious philosophy of the Visitation order, the Catholic monastery and girls school right around the corner from GU Hospital and where I have asked the Sisters of the Visitation to keep your family in their petitions as they pray together five times each day.

The quotes are:

"Nothing is so strong as gentleness and nothing so gentle as real strength."

"Do not fear what may happen tomorrow. The same loving Father who cares for you today will care for you tomorrow and everyday. Either he will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginings."

Please know, Vicki and Pete, that I am with you in prayer and spirit.

Always,
Olivia Kane

Anonymous said...

Mattie, Vicki and Pete,
Know that as the world turns and day folds into night in VA, you are all in our thoughts and prayers as we start another day on the other side of the world. We wish you and your little Hercules all the strength in the world...

Rose and family (friends of Julie Frye)

Anonymous said...

Hi Vicki and Pete, I am so sorry to read about Mattie's diagnosis. I had osteosarcoma in my right humerus four years ago. I hope that I can help with some ideas.

First of all, have you found the osteosarcoma e-mail list at ACOR? There are a lot of parents with children who have or had osteosarcoma there. There are also a couple of top physicians who read the messages and offer their thoughts occasionally. You can join the list here , and you will then have access to the archives and can correspond with everyone in e-mail or on the posting site.

It is very hard to figure out how to coordinate everyone's help, and to figure out what help would be best. There is a website that can assist you and your friends in doing this. It's Lotsa Helping Hands. If your friends need ideas about how to help, a bunch of patients and survivors made a list here.

I've met a lot of people with osteosarcoma, and I have read about the possibility of it mirroring itself in two joints, but I've never met someone in the situation. Mattie is definitely a rare one! I know this cancer is scary, and it is a long journey, but you can do it. I hope you'll join the osteosarcoma list and connect with that vital support. You are NOT alone!

Much hope,
Mary

Anonymous said...

Hi!

I have a google allert set for Osteosarcoma and it picked up Mattie's blog. My daughter (now almost 7) was diagnosed with metastatic osteosarcoma at 5. She is currently NED (No evidence of Disease) but since she had metastatic tumors in her lungs, we have to deal with the fact that there is a high rate of relapse. She has scans to check for this in a few weeks. She seems very healthy now though. I am writing to wish you well and to advise you to connect with ACOR (you can Google them) and join the osteosarcoma group at that site. ACOR is an organization that provides internet based resources for parents. I wish I had known about ACOR when my daughter was first diagnosed. Right now you probably feel inundated with info but when you are ready, look for this group. There are some things that you can find out about from other parents in your situation that you just can't easily ask doctors. I will warn you though that while there are some great stories of success in beating osteo on the site, there are some people who belong to the group whose children and other loved ones are very sick so make sure you are ready for that reality before connecting with the group.
Hang in there!

Lauren

Anonymous said...

Dear Mattie,

You're a brave boy! We're proud of you.

Love,
Hygie of Voxiva

Pete and Vicki,

We pray that God's infinite mercy be poured on your family.

God bless!
Hygie

Anonymous said...

Hi!

I remembered two additional things I wanted to let you know. One of the members of our ACOR group is NED (No evidence of disease) now but had something like 70 tumors in her lungs and a skip lession in her leg at diagnosis. It is nice to know that no matter what statstics you are quoted that people get better form this disease all the time. Also, if you want to read about my daughter or contact me, you can check out caringbridge.org and type emmakoertzen when prompted.

Lauren

Anonymous said...

Dearest Mattie, Vicki, and Pete-

Our thoughts and prayers are with you every minute of every day. Stay strong and keep your faith. We are here for you if you need anything.

With love,
Arti & Srinivas