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

September 17, 2008

Wednesday, September 17, 2008

Wednesday, September 17, 2008

The emesis for Mattie started at 9:15am today. However, the intensity picked up at around noon, and then from noon until 2pm, he was vomiting every 15 minutes. This may not sound like a lot, but seeing a six year old vomiting for two hours straight was hard to handle. In the midst of the vomiting, he was also getting very upset, agitated, and angry. Even under the best of circumstances as a parent it is hard to remain composed when your children take their anger out on you. As a parent, I am very aware that Mattie is very ill. But how do you channel his anger, and how as a parent are you expected to handle all of this on a continual basis? These bouts of difficulty and anger were a frequent occurrence today. But another culprit in these mood swings is ativan. It is an anti-emetic, but for Mattie it also seems to hype him up and get him agitated. At times today I wanted to scream, but then I catch my breath and realize it isn't fair to scream at someone who isn't always in control over his actions and behaviors.

This afternoon at 2pm, we tried a new anti-emetic with Mattie. I thank those of you who told me about Kytril. Kytril seems to work very well along with Ativan. But the verdict is still out as to whether Kytril really made the difference. I will know better tonight and into tomorrow. However, after Erin (Mattie's wonderful nurse) administered the Kytril, my mom, Lorraine, and I took Mattie for a walk in the hallway. That turned out to be a major fiasco. Mattie tried to walk but was unable to (ativan made him very unsteady on his feet), so we then moved him to a wheelchair. Mattie got super frustrated because he couldn't push the chair himself. He did not have the strength, or basically I think he couldn't be in control of yet another aspect of his life and got frustrated. So literally Mattie had several meltdowns in the hallway and refused to move at all. We tried reasoning with him and so forth. It wasn't a pretty picture. It was like dealing with a two year old tantrum! Finally I reasoned with him and got him to sit in the wheelchair with me and we moved through the hallway together. Needless to say, I was worn out from this drop down drag out! Later on in the evening, I had a senior nurse approach me. Her name is Carol. Carol came up to me and my friend Lorraine. Carol acknowledged that we did not know each other, but she told me that she observed me working with Mattie in the hallway when he was having a tantrum. She said in her 35 years of nursing, she has never seen a parent handle such a difficult situation so well. I must admit I was stunned. Because I did not think I handled it too well, I just feel tired and frankly not using my best skills possible. Actually the heck with the skills, all skills go out the window in times like these. In any case, Carol's kind words meant a lot to me today. It is amazing how a loved one can give us the same feedback, but when you hear it from a stranger, you pay more attention to it. Why is that?! Thank you Lorraine for visiting. For your company and support. We love the bagels and the craft activities for Mattie.

I had a nice visit today from Alison as well. Alison brought me lunch and a lovely comfy outfit to wear. She also gave Mattie a special light up ghost. I personally love "ghosty." He is adorable. We will use him tonight. I always appreciate Alison's sensitive and introspective manner. It is very special when you meet and make a new friend, and you and this person just click. Actually Mattie has brought me the gift of many wonderful friendships! Alison got me out of the hospital today and we sat on a bench by the rose garden at the hospital. It was wonderful to actually be a part of the world for an hour and take in fresh air.

I received an e-mail today from a close friend of mine, Karen, who lives in NYC. Karen and I have known each other since 6th grade. We have always been close and she writes to me each day! Today something she wrote in an e-mail to me caught my attention. She said, "I know you are dealing with one of the worst things you could be dealing with in life. The amazing thing is that you are also dealing with the best life can offer you. Stay with me here... You get to see the good in many people." Karen is absolutely right, this is frankly the only positive part of Mattie's illness. I am seeing people in a whole new light, and I am seeing how generous, kind, compassionate, and selfless all of you are. I am not sure why this surprises me, maybe because as a mental health provider most of the time people are coming to see me because of failed relationships and disappointments experienced in life. Even though Karen lives in NYC, she has forwarded the carwash fundraiser flyer to all her friends in the DC area. I thank the Kahn family for responding and getting the word out at local schools. People who I do not even know are coming together to help Mattie, it leaves me speechless.

Mattie also received a special e-mail today from Coach Dave (SSSAS head football coach). Dave wrote, "I am truly blessed that I have gotten to know you. You keep fighting today to get rid of those bone bugs and I will keep thinking about you and how amazing you are. I have been a teacher for 18 years and you always seem to teach me something new every day. Thank you for doing that. You can add that to the growing number of talents that you have (of course my favorite is your ability to make me smile)." I hate to admit this, I have never been a football fan, but after meeting Dave and reading his e-mails, I am thoroughly a Saints football fan. I am just so impressed with the depth of this football coach. He understands Mattie's situation on so many levels and can relate to Peter and I as a concerned parent.

On the electronic front, thank you Kim, Emily, Susan, Charlie (love the sand castles) and Margaret for the wonderful e-cards and Eva and Barbsie for the nice e-mails. Before I end for the evening, thank you Rana for the wonderful dinner. We so appreciate you thinking of us each wednesday! Also, special thanks to Jenny (one of Mattie's art therapists) for coming up tonight and giving Mattie a train set. This brought a smile to his face today that I hadn't seen the entire day. What can I say, I love to see him smile!

4 comments:

Anonymous said...

Vicki, I am so amazed everytime I read yours and Peter's blog entries. You two have to be two of the strongest people I know. My heart goes out to your family everyday when I read the previous days events. Hopefully they will find an anti-emetic that works well with Mattie's body. It is good that you are surrounded by these wonderful people and they are able to help you get through each day. As always you are all in my prayers.

Audrey

mmmcguire said...

Hey Mattie!

I saw Leslie and Whitney in clinic and they told me that you are having a rough day again. Ugh!! Just wanted to let you know that Jessie and I are thinking about you and we wish that we could have come up to play and do art today, but she had to go to another kid's school for a visit, and I left work early because I'm still feeling under the weather. Tomorrow hopefully we'll all be feeling MUCH better, especially YOU!!

Have a good time in the wheelchair that's your size, and I'll see you tomorrow!

Jenny

Anonymous said...

Dearest Vicki,
Like Audrey, I too am amazed every time I read your blog entries--so poignant and heartfelt and real. How I wish the reality was different...

As Karen so wisefully said--you have gotten a chance to see the best in the people. I can't think of anyone who deserve the "best" more than you. I am looking forward to the day when we all come together to celebrate Mattie's remission and recovery.

I was so touched by what Carol said and I can see you now handling that situation like a champ. Why does it mean more from people you don't know? Because they have no reason to placate you--they call it like they see it because they are not intimately invested in you like your family and friends. That's why. But then you know it is the truth. How you handled Mattie's tantrum was clearly the work of a pro--not a professional counselor, but a professional mother. You are an incredible mother and I salute you. I salute your tireless energy, fierce determination and unwavering committment to fight. I salute your ability to be a "pro" in the midst of undescribable fatigue, exhaustion and worry. I salute you.
Tonight, here's to Vicki, an incredible Mom.

Much love,
Amany

Anonymous said...

Hi mattie,
Im really sorry that i have'nt been wriring enough. I hope you are feeling better and remember buddy, you will get through this.
Love
Tarek