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

November 30, 2008

Sunday, November 30, 2008

Sunday, November 30, 2008


Quote of the day (Thanks Daddy!): "Making the decision to have a child---it's momentous. It is to decide forever to have your heart go walking outside your body." ~ Elizabeth Stone

What a great quote. Maybe this is why Peter and I both feel like you might as well have diagnosed us with cancer too, our hearts are breaking!

I am happy to report that Mattie had a good night of sleep on saturday. He literally started getting sleepy at 11pm, and he was so out of it, that I cleaned him up, cut his nails, and put lotion on him. All the sensory things he would absolutely HATE if he were very awake. At midnight, he was completely sleeping, and he did not make a peep until 9:30am. At first I was concerned that the new pain medication was too intense for Mattie, but he takes it during the day as well, and he is always wide awake. It was glorious to see Mattie sleeping and not waking up in pain or frightened. However, throughout the day he complained of having a lot of pain from his head to his toes. I figure this is probably natural since we took him off his fentanyl transdermal patch.

Mattie had two visitors today. The first one was Sandra, our in home nurse. Mattie did not give Sandra a very good greeting. He was screaming at her and demanded she leave. Prior to her arrival, it was such a busy morning meeting Mattie's demands, so much so that I was still in my pajamas when Sandra came over. Peter isn't feeling 100% today either, but was doing some things for work in the morning, and even dropped Patches back off at the animal clinic since we will be in the hospital all week along and we don't want to be worried about her medical needs. Sandra examined Mattie's ulcer today, and right after that Mattie got super agitated and wanted her out of our home. Sandra did not comply but instead started talking to me about what things I need to do in the hospital next week for Mattie. She is very supportive and wants to help us, but I am not sure how to say this, when I am busy with Mattie and dealing with his crying and screaming, this is not a good time to talk with me.

Mattie expressed for the first time today his desire to get out of the house. He hasn't wanted to leave all week. Today he wanted to get a few toys before heading back to the hospital. I broke it to him today that he is going back tomorrow. He wasn't happy about it, but I told him it wasn't for surgery it was for more medicine. He looked at me confused. He knows all the tumors have been removed, so I guess in his mind what else are we fighting?! I explained to him that he has clever bone bugs. That even though the bone bug homes and most of the bugs have been removed, there are a few that are sneaky and can hide in different parts of his body (other than the parts operated on). In order to wipe these bugs out completely, he will need more medicine. That explanation seemed to suffice. But Mattie was focused on going to Target today to find things to bring to the hospital!

At 2pm, Dan, Mattie's in home physical therapist came to visit. Dan was very patient with Mattie, and seems to be able to get Mattie to do his exercises even though Mattie is somewhat scared and agitated by them. Dan comes with a big box of baseball cards and uses them as a reward when Mattie complies. Mattie came away with 13 cards in total today! Before Dan left I asked him if all his cancer patients are like Mattie. His response was a good one. He basically said that the children he works with who have cancer are similar. The littlest things can set them off. My analogy is a rubber band. If Mattie were a rubber band, he would then be stretched out as far as he could go. The more you touch the rubber band in this state, the more fragile it gets, and even the slightest touch (sounds, etc) can cause him to break. Or as Mattie says, "I am going to blow my stack." Unfortunately it doesn't take much for Mattie to blow his stack now a days. Mind you I think all of Mattie's emotional reactions are SO understandable and very NORMAL. But you also need to understand Peter and I are only human, and there is so much of this one can take day in and day out. Particularly what is even more upsetting is what sets Mattie off is if Peter and I move from Mattie's side or God forbid leave the room he is in.

After Dan left, Mattie got dressed up and we all went out on a shopping adventure. My parents joined us. Going out with Mattie now is an experience because it involves a HEAVY wheelchair and many transfers from one seat to another. We first stopped at Rite Aide. Don't ask, but this pharmacy has Mattie's favorite toy metal cars. We transferred Mattie several times today from his wheelchair to the car seat. I think we have mastered this. After Rite Aide, we went to Target, where Mattie got things on his list that he really wanted, such as Scooby Doo graham cracker snacks (which he loves and I can only find them at Target), candy canes, flavored ices, and of course legos!

We got home, we all had dinner together, and now we are slowly getting ready for monday. Mattie had a dressing change of his central line tonight which is a total production. Especially since he is hyper sensitive to all touches now. You should see how horrific it is to pull a sticky bandage off of a child who doesn't want to be touched. Who ever came up with this process should be SHOT. Or better yet should have to perform this on Mattie on a weekly basis. At the moment (9:30pm), Mattie is in a bad mood, complaining of pain all over his body, says he has a headache, and wants our 100% attention.

As you know tomorrow we head to the hospital for chemo. We did decide to go with the additional drugs, Ifosfamide and Etoposide. However, I thought you would like to hear the timing of these gems. The administration of these drugs is over five days. Unlike any of his prior chemos. Ifosfamide is administered for fours hours every day for five days, and Etoposide is administered for an hour every day for five days. After all of this, then Mattie stays in the hospital an additional day for hydration, and just like Cisplatin and Doxorubicin, he will become neutropenic several days thereafter. I don't know about you, but even under the best circumstances (what I mean is no bad side effects), this regimen sounds nasty.

I received a lovely e-mail today from my friend, Susan S. Susan wrote, "It has been on my mind for awhile to do this for you, so today I did it. You have so many wonderful quotes and stories on your blog and while they are good for a day or the week they then are lost into the annals of history so I thought what if they were in a form that you would be able to access more easily?? I know you have received many great books of hope and quotes but these are the ones people sent to you specifically for your family. Anyway I went through (and hopefully got them all) your quotes, stories etc. and put them into one word document so you can read it whenever you want. As the quotes roll in I'll add them to the book." Thank you Susan for this lovely gift. I read over the quotes and stories today, and I find them so lovely to have in one concise place. Thank you for taking the time to do this for us.

On the electronic front, we want to thank Karen, Brian Boru, Ms. Pollak, and Cousin Donna for all the wonderful e-mails and e-cards. In addition, we want to thank Brian Boru (our feline friend) for his care package filled with holiday stamps, a Scooby Doo activity book, stickers, and wonderful lollypops. We think you are quite a cat!


We also want to thank Ashley and Kathy (two wonderful RCC moms) for spearheading a prayer service for Mattie on December 8th. I have posted this information on top of our blog. Our family is deeply moved by the planning of this event. The specifics are: Prayer Service for The Brown Family
Monday, December 8th at 7pm
Church of the Resurrection - Parish Hall
2280 N Beauregard St. Alexandria, VA 22311
Adults Only

I end tonight with a Prayer of Saint Patrick that my good friend, Jen, in Boston sent me today. Thank you Jen!

Christ be with me, Christ within me, Christ behind me, Christ before me, Christ beside me, Christ to win me, Christ to comfort and restore me. Christ beneath me, Christ above me, Christ in quiet, and in danger, Christ in hearts of all that love me, Christ in mouth of friend and stranger.

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