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
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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!
Well I became one of those crazy people
I love quoting my kids, they’re all facinating and really just all around excellent kidos. Cameron: “Dad you’re cray cray” and yep I was and yep maybe I am. Yesterday was one of those hard days, they don’t come that often which I’m thankful for. All thoughts, conversation and actions send your mind back to Jacob, back to treatment, back to how important our next scans are, to thoughts of the 8th, 9th & 14th floor and to all the other kids and parents going through this daily heartache. So after a long day at work and with my mind not right I did what anyone would do, I started going through Facebook just looking at people’s posts reading and trying to pass a little time. While reading I came across an old buds post of this past weekend where he was down in the med center with a girl I think is his girlfriend, I say “think” because I haven’t talked to him in like almost 20 years, and thought it was a good idea to post something along the lines of, “sadly we know that area too well”, then posted Jake’s website, said hope all is well and then moved on to read other people posts. Yep, I bombed an old bud’s post of him sharing his nice weekend with, “Hey my kid has cancer, hope all is well, peace out”. I woke up this morning and was like, “You did what?” and Cam’s quote came to mind “Dad you’re cray cray”. Throw in, I’ve never posted anything on FB before, I don’t have an account, used my work marketing account, and just wow! So Jon, sorry dude if you’re reading this. I don’t know how to delete stuff off FB and to be honest I’m little nervous to head back over there.
Then I start reading Jacob’s site and Mardon’s blog below. I don’t know if she’s leading this crazy or if I am. For the record I put one thing in the cart and thought she was saying superlose which was not on the label! Married going on 24 years Hon, kind of know by now when we’re shopping together I’m there to hold the kid or push the cart not add things in.
So as a “hey we maybe a little crazy right now but really we’re not that crazy” I thought I’d post a gallery of what’s been going on with us. Also like to end my posts with a kid quote. Yep two of them in one post this time. Have to set this one up a little. I walk in from work last night to Jacob watching TV.
Me: What’s up Jake.
Jacob: Yeah my poop’s green.
Sums it all up right there…
-henry
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