Tuesday, September 1, 2009

September is Childhood Cancer Awareness Month

Please join us in recognizing September as Childhood Cancer Awareness Month! Let all of your friends and family know they can show their support as well!GET YOUR GOLD ON FOR THE KIDS!!!!

Visit the Team Unite store for special September gear that proclaims your support for your FRIEND, your SON, your COUSIN, your SISTER, and all the KIDS:

Visit this URL to download a flyer (PDF format) that you can print, distribute, and post wherever you'd like: http://teamunite.net/TU_september_flyer.html

If you have a Caringbridge page, please consider changing the style to show the Gold (it is listed as yellow) ribbons for September.

Wednesday, May 6, 2009

May is Brain Tumor Awareness Month

I ask you all to take a few minutes and watch this wonderful video. It was put together by Jim Lipski, a very good friend of mine who like myself had a child "Lifted Up" after a very courageous battle against a DIPG (Diffuse Intrinsic Pontine Glioma). There are so many wonderful children who are currently battling and those who have been "Lifted Up".

I know we are all very busy but I ask you to please take a few minutes from your busy schedule and pray for all of these wonderful children and their families who are battling a DIPG or any type of brain tumor I also pray that those who know the pain of losing a child are forever comforted. I have made a lot of wonderful friendships since being thrown into this community, it is my mission to help spread awareness and help other families in any way I can. Please join me in honoring these brave children, I don't want anyone to forget about them.

Please show all your friends and family this video and make them aware that May is National Brain Tumor Awareness Month.

God Bless.

Rich ~Angel Mattehw's Dad~
DIPG Parent

Tuesday, March 10, 2009

Prayers From Maria Foundation

I wanted to share with you a video that was recently brought to my attention.

It was put together by the Prayers From Maria Foundation, I have asked and received permission from Maria's dad Ed to share this video with the DIPG community. I ask you to please take a few minutes and watch the video and see exactly what diffuse intrinsic pontine glioma (DIPG) does to these children and their families. It is hard for me because one of the doctors in the video, Dr. Mark Kieran of Dana-Farber was my son Matthew's doctor. I don't have to imagine how these parents are feeling, I know how they are feeling, everything they say, we experienced.

Prayers From Maria is named after Maria McNamara...from the PFM site...

"On April 1, 2006 life ceased to exist the way my family knew it. My oldest child and only daughter, Maria, was diagnosed with a diffuse intrinsic pontine glioma (DIPG). DIPG is an inoperable incurable brain tumor that strikes children usually between the ages of 5 and 11. A child with this diagnosis is given a 10 to 12 month life expectancy.

With the devastating diagnosis of our Maria came a great deal of sorrow and pain as well as desperation. My husband, Ed, and I frantically searched medical journals, books, articles and the Internet for anything—any sign of hope that we could cling to that might possibly save our daughter’s life. Instead, we were surprised to find very little research and few experimental trials. That which we did find was difficult to decipher from a layman’s perspective and, of course, each case study ended in the death of a child."

Prayers from Maria is a truly wonderful foundation, Ed told me that a new web site will be out in the next few days. Prayers From Maria is listed in the Foundation section, I will update with the new site once it is available.

Thank you Ed & Megan, from the bottom of my heart for all you do to help raise awareness and fund research for DIPG, please know I appreciate all you do for the DIPG (all childhood cancer) community. I will never forget Maria and her journey. May God comfort you each day.

God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent

Sunday, March 1, 2009

Calling All Hogs

I know I know, the title of today's post seems very strange, but please keep reading, trust me it's for a great child and a wonderful cause.

From Hogs for the Cause website...

Hogs for the Cause
is an opportunity for friends and foes alike to come together under the banner of the pig to support a worthy cause.

This year the proceeds will go to Ben Sarrat, Jr. Little Ben is an amazing 5 year old boy from New Orleans who was diagnosed with a Diffuse Pontine Glioma (a rare inoperable brain tumor) in Nov 2008.

Come join us while we roast pigs on a spit as well as smoke pigs, oysters, and chickens. Plenty of drinks intended for adults and other food as well.

What we mostly ask from you, is to participate. You can do this in a myriad of ways: buy a t-shirt, help out at the event, donate money and lots of it, donate items, spread the word, or just come and have a good time.

I invite you to check out the following sites, it links you to Ben's blog as well as Hogs For The Cause's FB event page. Please check out Ben's site and read his story and check out how Ben is doing right now. Please join me in praying for Ben and his family.

Ben's Blog

Hogs For The Cause FB event page

Hogs For The Cause webpage

For those who may not be familiar with Ben, he is a 5 year old boy from New Orleans. I have come to know Pirate Ben's mother, Erin, via a new DIPG Google group. It is a newly created DIPG support group for parents, family, friends and all supporters of DIPG and other childhood cancers. I invite all of you to visit the Google DIPG group and please consider joining and inviting other to join as well. I know that the Google group can be another wonderful resource for the DIPG community. I strongly encourage everyone to utilize as many DIPG resources as possible, leave no stone unturned in this battle for cure.

Let's all help make this event a huge success.

God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent

Thursday, February 26, 2009

Prayers for our DIPG children

I would love to post all updates regarding every DIPG (diffuse intrinsic pontine glioma) child I know about, but that would make each post too long, so while I ask you to please join me in praying for ALL of the DIPG children, I am asking for special prayers for the following children who are having a rough time and/or are trying to figure out the next treatment option, and could use some of our extra prayers. I pray each night for all of our DIPG children (and their families) but also for ALL children who are battling any type childhood cancer.

Morgan Prichett

From Morgan's CB page on Tuedsay...

"Morgan's MRI today confirmed our worst fears. Her tumor has continued to progress since her December MRI. We will not be making a trip to DC Children's this Thursday as they do not have any further viable treatment options to offer us. Morgan will stop participating in the Metronomic treatment protocol (although we may continue giving her the Accutane).

We are considering two alternative treatment options which we have previously discussed with Morgan's nutritionist, Dr. Jeanne Wallace. This will give us a chance for some hope and allow us to feel like we are doing something rather than nothing.

Please pray for God's continued guidance, strength and mercy for us in the coming days and weeks during this unimaginably difficult time."

Let us join Morgan's family in praying for God's continued guidance and strength.

Luke Pollok

From Luke's CB site....

"Luke is still in the ICU but looking better than he has in weeks. His symptoms seem to be fading slowly but surely. We are so glad to see our old son return. Luke has been eating more each meal and talking more and more by the hour. His latest discussions have revolved around leaving the hospital, moving into his new house, getting more ice cream and taking a shower.
The CT scan was done at 4 am this morning. Janet freaked when the tech had to ask what she was looking for and neither of them could find the tumor. She was walking on air and made me look at it.
The MRI happened at about 9 am. He sat perfectly still again, this time without any drugs! After that, the rest of the day consisted of slowly removing IVs and monitor wires and catheters until the point where he is just down to one mainline IV and a tube in the back of his head which should come out tomorrow. The tube that goes into his tumor will remain under his skin and Dr. Mancuso plans to drain it tomorrow since the MRI showed just a bit of residual liquid remaining in the cyst. This will also test the tube to verify no blockage for future use.
Janet will stay with Luke tonight so that I can go home to get ready for work tomorrow. Lance finished his track meet tonight so I will meet him at home to find out how that went. I thought I'd better try to save my days off as much as possible, plus I didn't want to put someone out having to cover me over the weekend.
I hope everyone has a great weekend!"

Luke had surgery on Wednesday of this week to drain the cystic component of Luke's tumor, the surgery went so well that they doctor was able to drain 3cc of tumor fluid.

That is wonderful news and I pray that Luke is home real soon. Keep up the good work Luke. Join in my praying for Luke as well as his parents and brothers.

Alexis Agin

From Alexis's CB page...

"If there is any good from yesterday's scan, it's that Dr. Warren believes that Alexis' tumor right now is low grade and slow growing. It is still not impinging on anything to cause symptoms. There is room and the margins allow for a little more growth before we see something. The chemical analysis done with the spectroscopy was not highly elevated to a bad level, so that's good too. Dr. Warren commented that she has seen other DIPG's like this, but not many out there that are acting like Alexis'. She told us that Alexis had already beaten the odds in being symptom free for this long. (Slim consolation). So, there were some minor positives out of the scans."

Please join me in praying for Alexis and her family. I will never give up HOPE on any of these kids. Also please check out Alexis' father Jonathan, he is raising money for DIPG research and I ask that you all consider sponsoring him, even if it just a few dollars. Remember, a lot of little amounts can certainly lead to a big amount. I applaud Jonathon, he is extremely active in the DIPG community.

Please visit the following DIPG kids and offer up an extra prayer for these kids and their families.

Ben Sarrat

Sadie Huish

Liam Reilly

Max Lacewell

Eric Kelly

Andrew Smith

I know I have the kids websites listed on the right side of this blog, but please click here to see pictures of all of our brave children who are battling a DIPG or other Childhood Cancer. Warriors

Lastly, I wanted you to please check in on Kole Miller, Kole is doing fantastic and he and family just returned from Kole's wish trip. They stayed at Give Kids The World in Kissimmee. Kole has the same wish trip that my son Matthew had, a week in sunny (most of the time) Orlando, FL visiting Disney World, Universal Studios and Sea World. I was not surprised to find out from Matthew's wish granters from Make-A-Wish that the Disney/Orlando wish is the most popular. Please check out Kole's CB page and read all about his trip and check out a few photos from his trip.

I hope I haven't made this entry too long, please know I am sorry I couldn't mention more of the kids, but please know they all are equally important and that my thoughts and prayers are with each and every one of them and their families.

I will try to spotlight each child and different foundations, as well as any upcoming DIPG events.

I thank you for checking out this blog and ask for you comments and suggestions to help make this a place of helpful information, an additional resource to compliment all of the other wonderful DIPG resources that are currently available.

Thanks and God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent

Monday, February 23, 2009

Morgan Pritchett - MRI upcoming

Please let's all pray for Morgan tomorrow, she is having some difficulties and has an MRI scheduled for tomorrow at 9:00am EST. I am asking you to join me in prayer that this MRI will help the doctors provide Morgan relief in her fight against DIPG.

A quick note about Morgan for those who may not be aware of her story, from her CB site (http://www.caringbridge.org/visit/ladybug)...
On October 31st, Morgan was diagnosed with a pontine glioma, an inoperable brain tumor. She had surgery on November 9th to install a central line in her chest to deliver her chemo and other medicines without having to insert an IV. She began chemo and radiation treatments on November 13th at Children's Hospital of the King's Daughters (CHKD) here in Norfolk. She will receive 30 treatments (5 days a week, M-F) which should be completed right after Christmas.

Please keep Morgan and all of the kids who are battling DIPG, and/or any other childhood cancer, in your thoughts and prayers.

God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent

Friday, February 20, 2009

Ellie Willaert - Lifted Up

From Ellie's CB site early this morning...

"Our sweet Ellie Rose left this earth tonight at 9:15pm to go home to Jesus. She was surrounded by family and friends and so many who loved her. She raised her right hand to Heaven and I could feel God reach down and carry her safely to His kingdom, where I am confident that she was greeted by many fellow angels. She passed peacefully, while lying between her mama and dada. We love you, sweet little Ellena ~ you will be forever 5, forever whole and forever in our hearts until we meet again."

Please visit Ellie's CB page and drop her family a quick note, please join me in praying they are comforted during this difficult period as well as everyday.

I hope the Ellie and Ian's parents take comfort knowing they went to heaven together.

Please pray for all of the kids who are battling this tumor, as well as remember all those who have earned their wings and have been healed.

God Bless.

Rich ~Angel Matthew's Dad~
DIPG Parent