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
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