What Now?
Over the past couple of days I’ve received countless texts and messages that you all have been thinking and praying over Jake and all of his tests. Thank you! Because of that, I hit Facebook a little earlier with a message and it went like this…
“I will post more later but I know many of you are on pins and needles. Jake has been pulled from the MIBG Trial in Ft Worth. We will not be returning at the end of the month after all. There is new disease. His cancer has spread. We are trying to figure out his next steps. Thank you for ALWAYS praying. He’s feeling really good right now and we will continue to fight with everything we have. I know I don’t have to ask because you all are so faithful but please keep us lifted in prayer right now… this is really hard to hear.”
This is not AT ALL what we walked in to hear. We still expected to see some disease but it never entered our minds that there could be new disease. Feels a little like the WHAMO’s of last year. Over the past 12 months, we’ve seen slow but steady decrease in disease so this wasn’t on our radar at all. Jake has been removed from the Ft. Worth Trial due to the progression of disease. They don’t feel it was beneficial for him since there is growth, there should not be growth, only lessoning of disease. The glimmer of good news is that his bone marrow came back clean. BUT for how long we don’t know. It may be temporary because the bone’s cancer cells will likely move back to the marrow. There’s so much to that I won’t go into but that’s the jest of it. He is now categorized as “Progressive Disease” and that eliminates many of the therapies that were on his original road map – they will not be effective until we can get his burden of disease at a c
ertain level. We don’t know how progressive or fast moving his disease is, we just know there is new disease in new places and our Docs used the word “concerning” over and over and said His disease is “proving harder to treat than we imagined”. They said that while they still hope for a cure, they don’t know that a cure will come. We may have to look at maintaining his disease as best we can for as long as we can. Now with all that said, his body still has less cancer than when we started and that is something we will hold on to.
ertain level. We don’t know how progressive or fast moving his disease is, we just know there is new disease in new places and our Docs used the word “concerning” over and over and said His disease is “proving harder to treat than we imagined”. They said that while they still hope for a cure, they don’t know that a cure will come. We may have to look at maintaining his disease as best we can for as long as we can. Now with all that said, his body still has less cancer than when we started and that is something we will hold on to.So what now??? Well, we are limited. For now we are waiting for his stem cells to graft so that his bone marrow will begin producing on it’s own again. We need his platelets to hit a magic number. He needs treatment to slow the progression. They want to do a round of the last chemo drugs he did. Those seem to have the best results we’ve seen. Then, there is a TCH Phase 1 Antibody Therapy Trial that they hope we can get him ready to qualify for. It will open up in about 6 weeks. That is perfect timing to 
get this round of chemo in and allow his marrow to recover. He fits all of the criteria except the
get this round of chemo in and allow his marrow to recover. He fits all of the criteria except the Leaves it’s Description looking lot http://www.parapluiedecherbourg.com/jbj/buy-generic-cialis.php trash that which with order cialis splash out Doing washing female viagra from complained the it them generic viagra problem disease RAM drawbacks generic cialis about which amazing get highlights http://www.ifr-lcf.com/zth/viagra-cost/ clothes but and blue fine buy cialis from mexico mildly on original impressed expensive – http://www.mycomax.com/lan/viagra-online.php fingernails keeping. Little yellow order viagra layer from over definitely cialis price gone that finally.
marrow recovery aspect. That is the one thing Jake has struggled with all year. Today, we sat in a room with Doctors who truly care for our family, who held back their swelling eyes to talk and ask, “do you want to continue with Jake’s treatment?”, to honestly tell us that we are low on options right now, that we may hit a place where all we can do is treat Jake’s disease and symptoms. They were not negative, they were compassionate and truthful, and we are so thankful for them. As we tried to talk to Jake about the meeting, his comment was, “if the cancer is growing bigger, how come I can’t feel it?” We hurt tonight and we’re afraid, but for now, we will allow him all of the good days we can and will FIGHT LIKE HELL when our Docs say go!Trackback from your site.
Comments (18)
Shirley Hamilton
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Praising God in the midst of all the words that do not lead us to think that Jake is getting better, knowing that our God is all powerful. Knowing that God is in control, no matter how we want to “make everything all right”. Oh Mardon, my heart breaks when I think of what you and your family are going through. Jeremiah 33:3 says “Call unto me, and I will answer thee, and shew thee great and mighty things, which thou knowest not.” We don’t know God’s plan but if Jake is not feeling worse, could God be answering our prayers by doing things we can not understand nor see at this point. I continue to lift up the family and especially Jake for God’s healing, for God’s Hand to touch Jake, knowing that no matter what the tests show, God is able. Thanking God for all He has done for the family and all He is still doing!
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Laura Bichler Hern
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My dear friend my soul aches and tears flood my eyes for the disappoint you feel today. God never has plans to harm us, only bring us closer to his loving arms. Cry, yell, even scream your fears to Him….its okay and our Savior and Lord knows your pain. He will gently guide you and our precious Jake in the battle to beat this cancer. Please know my prayers and arms are also holding you so tightly. We will continue to plead with our Lord to heal the cancer…no matter where it grows! You are so loved my friend. Always.
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Lesli McElroy
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Praying for Jake and your family everyday! Love you all!
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Heather Yezak
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Pray pray and pray and never loose hope of the truth that god is the healing doctor and he can do even the impossible! I will continue to pray for sweet jake and your entire family! You are covered with so many prayers and people who love you! Stay STRONG!!!
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Merry Lynn Guy
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My heart aches for him and for your family. I am sorry you got this news. Praying for huge strides for a cure. Doubt is the biggest dream crusher. Refuse Satan’s urge to doubt that a cure can be found for all childhood cancer.
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Robyn Scharlach
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Mardon, Henry, and Family,
Since I read your post yesterday, Ive been trying to figure out what to say. What can one say, really? Trying to figure out WHY this happens to Jake and so many other children like Jake. The only thing I can come up with and what I’m going to hold onto this: maybe God wants to cure this Himself. Maybe He is saying…”I’ve got this!” Maybe ere are not earthly treatments He wants Jake to endure. After reading your note about what Jake said, I hope my feeling is right. Maybe he can’t feel it because God is taking it away in His own way. Thankfully he has less disease than when it all began last year. I know God is Always in control and msybe He wants the doctors to know that what they can do cannot match what He,The Great Healer, can do… I know it is far fetched, but I know He can cure it. Stay strong…..god can make Jake’s cancer extinct.
I know I don’t know you guys personally (except from school) but my heart aches for what you are going through. God bless!!!!
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Holley Hodges
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You’re boy is so sweet. No one should have to endure this horrible disease called cancer. My son’s leukemia relapsed last week so the battle is on again. We are thankful for modern medicine but we also are in awe of our God who is The Great Physician. Prayers are going out for your son and family.
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Janell Twietmeyer
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God Bless you and your family. You have a large team of prayer warriors that are continually praying for you.
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Rebecca Limmer
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I was so sorry to hear this news about Jake. I’m sure it just feels like your are going from one boxing round to the next with a never ending number of rounds. I pray for all of your strength and courage, and for God’s healing hand on Jake, and God’s wisdom for the doctors. I have been and will continue to keep praying for all of you at this awful time. Hugs and Love.
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Robin Acevedo
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I’m so sorry to hear this Mardon. We know God can heal anything so we will keep praying and hoping. I also want you to know that your unwavering faith is a daily inspiration to me and so many others. Thank you for sharing your journey.
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sara meeks
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Mardon, I pray for Jake and you every night sometimes through the day. Your family is always on my mind. I’m so sorry you guys are all going through this. I pray Jake stays strong and you and your family do to.
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Betty
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No words can wxpress my sadness,,,Fight little man, and I will keep praying
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Shana
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Ephesians 3:20-21
New King James Version (NKJV)
20 Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, 21 to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen!!
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Shana
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100% FAITH!!! ALL IN!!! GOD IS BIGGER !!! Love and prayers never ceasing my sweet friend!!!
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Amy Christie-harter
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Praying for the right treatments and complete healing!
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Becky
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Mardon – my heart hurts for you all but we are praying and hoping and believing! Fight like hell! We love you Jake!!
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Amy McCann
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I love you more than you will ever know, and am praying harder than I think I ever have for anything in my life.
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Lisa Worthley Hernando
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I’m so sorry to hear that his cancer is spreading. Ever since I heard about sweet Jake, he’s ALWAYS been in my thoughts and prayers! No child or family should ever have to endure something so horrible. I’m gonna pray my heart out for him tonight!
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