September
Here we are in September… Childhood Cancer Awareness Month. And it was two years ago, in September, Jake was diagnosed with cancer. We were told to gear up for the fight of his life, that the statistics were low, that getting to the other side of this disease would be the hardest thing we've ever faced but it was possible. The morning of his first surgery, my friend Paula encouraged me that someone had to be in that 30% that make it, why wouldn't it be Jake? There was real hope that a cure would come. Today, here we sit, two years later, and we are being told that a cure will not come. We've heard this before but this is different. Our doctors are realists, they are hopeful and brilliant and caring, but they see things daily, things we can't imagine. And they are saying it's not going to happen, that we need to make memories.
When they say things can turn on a dime… here is what that means. Last week we were making plans to 
spend 4 hard weeks in the hospital and then head to NY. Today we met with his team and were told that we should begin making plans of a completely different nature. Jake's scans came back with very aggressive progression in all areas, his bone marrow, bones, liver and lungs are all riddled with tumor. He has become chemo resistant. TCH feels that there is nothing more they can offer, other than palliative care of a very low daily chemo in hopes to slow things and offer pain relief. We find this difficult to accept, yet there are signs. He has been experiencing intermittent pain (he has pain, we medicate and he's fine again). He's happy and bouncy and normal but there are things Iike the moments that he cries out in pain and says it feels like it's burning on the inside and the outside, the night sweats, more and more bath time, the whimper
ring in his sleep. As a parent, you know that there is something different, wrong.
His scans have been stable for the last few rounds, even slightly improving. We expected the same to be true again but the cancer has blown up. We were warned this was possible but it's that deep denial that offers parents the hope needed to do these kinds of treatments to their child. Becuase of the progression they have pulled the HD-ICE which means NY is out. We've looked at everything. EVERYTHING! At the moment, any possible treatment lies in Michigan. We over nighted the new images to Helen DeVos in hopes of some kind of different news. NY, TCH and MI all agree the HD-ICE is no longer in his best interest. We ask for your prayers as it is unbearable to look at him, see him bouncing around and hear this news. Jake does not know any of this.
Because education and awareness is everything, we have a video we were saving for this month. Jake was on this trial last year at Cook's Children's Hospital. It is not intended to bash this therapy, it is intended to show what our children experience, things that no one knows, to show that more is needed. Our children are suffering, there are no good treatments but mostly THEY NEED MORE!
Please forgive how fast it's running. For some reason when we transferred it to YouTube the tempo increased, making some slides too fast. I don't know how to fix that. Please share, I know many don't want to see these things, but things won't change unless people know. [youtube https://www.youtube.com/watch?v=NL2OPhdsTPo]
Video Link: https://www.youtube.com/watch?v=NL2OPhdsTPo
THANK YOU for going GOLD!! We've seen so many of you taking the cause on in full force. We've seen many of your Whipping Childhood Cancer Challenges – keep them coming! (If you missed it… it's the national call to help us Whip Childhood Cancer with a pie to the face. If you take the challenge, nominate 7 friends, take a pie to the face and donate $7 to a childhood cancer foundation because 7 children die EVERY DAY. If you don't take the challenge, donate $46 to a childhood cancer in honor of the 46 children who are diagnosed each day. Post your video and let it spread!) If you haven't been nominated yet, don't wait. Start it up! Jake nominates you… every single one of you that are reading this today… YOU ARE NOMINATED BY JAKE. Let the world know that children are fighting for their lives and we need to FIGHT FOR THEM!
Please continue to pray for our family. Pray that Michigan has SOMETHING! Pray over the symptoms Jake is experiencing. Pray for a miracle!!
We send you all our love and gratefulness for walking this journey with us.
~~
Many of you have asked what CHILDHOOD CANCER FOUNDATIONS we recommend for your Whipping Childhood Cancer Challenge. Here are some of our favorites…
CNCF – Children's Neuroblastoma Cancer Foundation
Alex's Lemonade Stand
Peach's Neet Feet
St. Baldrick's
And for local foundations…
BIG Love
Brennan's Buddies
Competing For Hope
Jaquelyn Sky Foundation (Jackie's House)
Jesus Is Bigger Than Cancer
Linked With Liam
Zoey's Angles
All of these are amazing, local foundations that serve TCH and MDA right here in Houston… and are tied to families that I know personally. They have FB pages or you can Google for their websites.
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Comments (24)
Jen Connolly
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We don’t know one another, but I read your story & watched Jake’s video. Your story was linked to a caringbridge journal in an effort by a friend, whose 3 year old son has lukemia, to raise childhood cancer awareness. I am writing to let you know that as 1 small person in this world I am efforting to make a big difference by spreading awareness about the lack of awareness & funding for childhood cancer. My heart goes out to Jake & your family. Jake is a very strong & brave boy, and you are amazing parents to be doing everything you can to hold him just 1 more day, and 1 more day, and 1 more day. Jake’s bravery comes from the love he has in his heart!!
Jen Connolly
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Alissa
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My son was in the same situation. I wish your family all the best.
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Lisa Darby
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We are so deeply saddened by this news as we had such hope for NY! Our hearts break for all of you but will pray that Michigan will be a new opportunity. Keep your faith and know that you are all loved!
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Merry Lynn Guy
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My heart aches for all of you. God hear our prayers let there be a miracle!
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Lindy Hudson
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My heart and prayers go out to you and especially to sweet Jake…. The bravest of us all!
Lindy Hudson
Fort Worth, Texas
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Kathleen Capolongo
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Dear Mardon,
You don't know me but your story has pierced my heart. I will keep you and your precious Jacob in my prayers. In January of 1997 my 52 year old, non smoking husband was diagnosed with stage 4 lung cancer. He never once complained or had a "why me" attitude. Only once he began a sentence that I thought would end in a complaint. He said, "Whenever I hear people complaining about things I want to say 'Come with me…' " That sentence didn't go where I thought it was headed. He went on…"and see the children. That is the real tragedy." Over seventeen years later and the options for the children are not much better while many advances have been made with other forms of cancer prevalent in adults. Learning about Jacob has renewed my resolve to do what I can to promote awareness and contribute to efforts being made to bring better treatments to the medical market for all the little ones waging this awful battle. I hope and pray for a mirable for that beautiful little boy you love.
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Candace johnson
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Praying for sweet, brave & awesome Jake. Praying for your family, the doctors & all involved. I hate cancer, my husband, mother-in-law, father-in-law, dad, sister & close friends are battling or have battled this terrible disease. We will keep you all in our thoughts & prayers.
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Shirley Allen
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Prayers for everyone!
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Patsy
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I cried at work today for precious Jake…..didn't think I was going to stop. Tears have subsided for now but the prayers will go on forever.
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Cheryl Wamer
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Marion, we are so sorry, this is so hard to read, my heart breaks for your family. We are praying for all of you! Stay strong!
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Carol
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What childhood cancer foundation is a good one to donate to for the Whip Childhood Cancer challenge?
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Rhonda Feinberg
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Prayers for peace and healing from our mighty God. Jake is an amazing kid. You all are amazing.
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Shelly Wahle
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We are absolutely heartbroken and are praying harder than ever! We love you guys and we will never EVER give up! Hang in there Jake!
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mary see
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I am very sorry to hear about your son. My great nephew has cancer we pray everyday for a cure. My heart goes out to you nd your family. And jake you are a warrior keep believing and smile .prayers to you all
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Abby Muirhead
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Praying.
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Beth Cross
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Powerful film! Jake is a true warrior! Praying!
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Sharon David-Jones
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Mardon, your video brought me to my knees. Thank you for sharing a glimpse of the heartache & strength Jake, you, your family & everyone living through cancer endures. I am praying for Jake & your entire family….I am just devastated to hear the latest update. God Bless – xoxo
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Jeanne Held
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I would like to donate to a childhood cancer foundation in honor of Jake. Can you give me an address of where to send a check?
Our prayers are with your whole family.
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Sandy Jou
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Mardon, I’m so sorry. I’m so saddened by this turn of events. Your video was powerful and well done- I will try to share it. We love you and pray for Christ’s hand to comfort and guide you.
Sandy Roraback-Jou
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Sarah Ashbaugh
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Mardon, the video is difficult to watch, but living through it is near unbearable I am positive. You, jake, and your family are so strong. Jake is in my prayers…what a fighter. My heart aches for your family. I hope michigan brings new hope. Xo Sarah Ashbaugh
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Sharon
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I cried. Mardon I wish nothing but the peace God can give you for you, jake and your family.
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Kristy Stavinoha
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Mardon, this breaks my heart! Prayers are streaming for Jake and your sweet family!! What is the website you recommend to donate?
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Melinda
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Our hearts are aching for you. That's all I can think of to say. I hate this cancer – with everything I've got. Hate it.
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Karen Chaney Petersen
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My prayers are with you.
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