#morethan4

 We must raise awareness of pediatric cancer and fund research!

It's hard to not share every heartwrenching story that I come across. When you become a cancer mom, you become acutely aware of the suffering of others. Even before Wil's diagnosis I was/am definitely what one would call an empath. I immediately take on the suffering of those around me.

Luckily early in my teaching career I was able to learn how to NOT take every kid home and adopt them, but that does not stop my feelings ESPECIALLY when it comes to kids. It is one of the many complex reasons why dealing with my son's cancer diagnosis is so emotionally painful.

I am just going to share here a group of articles that touched me lately, all of them have links embedded. They have been weighing heavily on my mind and although I don't wish to cause others to experience empathy fatigue, I also do not want to just let them pass by without acknowledgement. All of these stories contain public information and nothing is asked of anyone but to remember them.

SYDNEY
If you happened to see the little girl in the video kicking the balloon with Wil in his ksdk story, that is Sydney. She was most definitely the first kiddo in the cancer center to come up to Wil and say hi. She is full of joy. Here was an update from her mom. This week her family is at Disney making wonderful memories, but nothing will make this ok.

Posted on January 3, 2018

"Please share. To include my words...copy my words, hit share on this post and then paste my words onto the new post. As hard as this post is to make, I have put it off long enough. Sydney’s scans today did not show what we wanted them to. Her cancer has returned and is savagely taking over her body. Her liver is covered, and she has another mass where we believed was a stitch that hadn’t dissolved. Tumor growth has more than quadrupled since the Dec 7 scans. 

That being said, Matt and I have said since she relapsed in July that we were going to focus on quality of life and not quantity. We have already said we were not going to do a Phase one or Phase two trial, that was going to make her extremely sick for the rest of her time here on earth. On Friday, we got the results from her GAIN testing, where they were trying to find a drug that would work on the mutations that her cancer has. A oral chemo drug has been promising in adults, but is still at the trial stage in children. The drug is already FDA approved so we wouldn’t have to participate in the trial to get the drug. After looking at the side effects, which are very minimal, we have decided to TRY this drug. Saying that we wouldn’t do a trial was EASY to say when we really didn’t have to make that decision at that time. Now that the time has come to make that life or death decision, it’s not so easy. So we will start this new drug, Lynparza tomorrow. We will have to go weekly for blood work. Dr. Rob said to not get our hopes up because this is growing so rapidly, and for us to try to hurry up and finish up her Bucket List. He said we could have a few months...

please pray for my girl. Pray for her pain to be controlled, pray for a miracle. Pray for Matt and our other kids. That is what I need right now. Please just pray. "

BRYNN
Fighting doesn't always mean you win, but it does always mean you are a winner. This was a tough story to follow as too many connections, Parkway West, Mercy, etc...
Update: Brynn Marie Haun - July 22, 2002 - January 5, 2018 "Lori and I kept vigil at her bedside through the night. Kohl's alarm woke me at around 5:30am. Brynn was still breathing, but her breaths were becoming more and more shallow. Her brothers wanted to be there with her, so we were able to wake them up and bring them in moments before she took her last breath. Brynn slowly and peacefully passed into eternity this morning just before 6am." -Dan Haun, Father to Brynn


JUDE
HERE is a little guy who lost his life from the flu. Although he did not have cancer, his loss effects all cancer patients who are immuno-suppressed.

Jude's mom put him to bed and he never woke up. His big sister had brought the flu home from school from a classmate who did not get the flu vaccine and she is raising awareness of not only getting the flu vaccine but how important it is to not spread illness. Stay home when you are sick, wash your hands, etc. Good reminders here, but even more so now that I am aware of how many cancer kids are immune-suppressed.


BRETT
The passing of high school student Brett Haubrich has been on my mind.

His make a wish was to be a priest for a day. He met the pope, he had his 13th birthday party at Dave and Busters...but how heartbroken his mom must be. In her own words, "He fought for 3 1/2 years this monster brain tumor. It took his right side leg and arm/hand function and speech. But it never took his faith, love and kindness. "


CAMILLE
Dr Rob, our doc, helped make this story happen for Camille a 17 year old girl from the Dominican Republic. Camille has Leukemia and because of the hard work of Dr. Rob her treatment is being taken care of.


And for anyone who has actually made it this far...you are one of the "helpers." Thank you.