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Post by Johnkenn on Dec 26, 2018 12:26:11 GMT -6
Some of you guys might know Shane, Category5, on of our members here. I JUST saw on facebook that these guys have been going through it for quite a while - very similar to what Soeren has been going through. Please take a moment to give what you can to help these guys - a donation or prayer. Here's a link to the Facebook page as well. www.gofundme.com/help-heal-slaterOur Story OUR BOYS LIFE·THURSDAY, OCTOBER 18, 2018 Our youngest son, Slater, was diagnosed earlier this year with Stage 4 High Risk Neuroblastoma, at the age of 4. In April, 2018, we, along with his 6-year old brother, have moved to St Jude Children’s Research Hospital in Memphis, TN, leaving behind our home in Florida, family and friends, as we get our little boy the treatment he needs. Our treatment plan was for an 18-month intensive treatment which includes surgery, chemotherapy, bone marrow/stem cell transplant, radiation, and immunotherapy, along with other supportive therapies. We still have a long ways to go. Our happy-go-lucky sweet boy, always with a smile, had a tumor grow from the adrenal glands above the kidneys, to which had already spread at the time of diagnosis. The disease was spread to his hip bones, pelvis, all the way up his spine, in his clavicles, and in his skull. It had also spread to his bone marrow, which consisted mostly of diseased cells. As a parent, standing in the hallway outside the hospital room, getting the diagnosis of what was finally ailing our little boy, that it was cancer, Stage 4, had knocked the wind out of our lungs. Just recollecting that memory of those months ago is traumatic to share, to type. It’s an experience I hope no other parent of a child on this earth ever has to endure. We are now broadly sharing our story and experience because we know, especially with one of the extremely rare cancers like ours, Neuroblastoma, are not often known or available. Neuroblastoma occurs in less than 800 cases a year. Our little boy is high risk, because a) his age. Most children with this disease are diagnosed by age 5, and he was a few months shy of his 5th birthday; however, the older you are, the harder it is to cure. Our doctor said that for Neuroblastoma, “he’s old”, and though it’s hard to think of a 5-yr old as being “old”, but for this disease, it rather is. Success rates for curing this disease are far better for infants and toddlers, less so for children older than ages 2-3. The second reason he is High Risk is because it had already spread throughout his body, including his bone marrow, to which we required a bone marrow/stem cell transplant. Yet, the best place for us to be is St. Jude Children’s Research Hospital, where there are patients like him, that have experienced great success. We can’t wait for him to be a success story too, it is our hope, our belief, with continuous prayers, that he too shall overcome this. Many people have asked how they can help us during this time, especially when we are 1,000 miles from home, from family and friends. Our wonderful friend Katherine has set up a GoFundMe account for us. www.gofundme.com/help-heal-slaterShe had initially set up while we were in three different hospitals in Florida trying to discover what was wrong with our baby boy, at the time for taking time off work, for the hospital medical expenses there those weeks... unfortunately we had no idea that just weeks later, we would be faced with the shock and despair of what his real diagnoses was. The day after his official diagnosis on April 1st (which coincidentally was Easter Sunday, and April Fools Day), we were accepted into St. Jude as they had an open protocol for his type of cancer to take him as a patient, and the following day after that, we were on a plane with a few suitcases to Memphis, TN, and will be here until at least next Summer 2019, but hopefully at least by Fall 2019. If any of you would like to help and contribute, we would be forever grateful for your generosity and support. It’s difficult to acknowledge that indeed this has happened to our child, but living here at St. Jude has shown me that SO many children and families are suffering too, from all kinds of childhood cancers. This hospital, the staff, the medical breakthroughs and the science, are bar-none. The success and hope and miracles this hospital has given so many children and families, we feel blessed that we are able to get our treatment here. Please find it in your heart to support St Jude in any way you can. They are saving children’s lives each and every day. Thank you for being part of our journey.
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Post by kcatthedog on Dec 26, 2018 12:42:56 GMT -6
Yes, a very long haul for our friend's little guy and family.
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Post by ragan on Dec 26, 2018 13:11:58 GMT -6
Oh no....
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Post by drsax on Dec 26, 2018 13:41:16 GMT -6
Oh man, so sorry to hear this news. I can’t imagine. Shane, lifting you and your family up in my thoughts and prayers and sending your family all my best
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Post by keymod on Dec 26, 2018 14:02:17 GMT -6
Prayers for Slater and family. Sent a little something to gofundme, HIH.
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Post by ragan on Dec 26, 2018 14:56:34 GMT -6
Shane and his wife Shari sent us a beautiful care package when my little boy (same age as Slater) was born. Totally unprompted, just because they were happy for us and they’re generous people. It was some baby supplies kinda stuff and a lovely framed birth announcement for our little guy that his wife (a designer) made. All for someone they’ve never met in person. Shane and I have had some great email conversations about being dads. My heart just breaks for the burden that’s been put on that sweet little family.
I’ll definitely be supporting the GoFundMe and keeping the Bushmans in my prayers.
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Post by jcoutu1 on Dec 27, 2018 7:15:57 GMT -6
Prayers and thoughts for Slater.
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ericn
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Post by ericn on Dec 28, 2018 10:05:11 GMT -6
Ah man that sucks our thoughts and prayers are with them.
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Post by cowboycoalminer on Jan 5, 2019 19:21:58 GMT -6
Like Ragan, I've been close to Shane. They are the finest folks. Prayers and love to that beautiful family.
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Post by Guitar on Jan 7, 2019 17:43:23 GMT -6
My heart goes out.. not sure how else to say it. Big props to you mothers and fathers out there.
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Post by guitfiddler on Jan 20, 2019 10:29:09 GMT -6
I know all too well about this. I had a family member that was diagnosed with a Glioblastoma. Unfortunately, he was stage 4 and malignant when we got the news. It’s tough hearing this. It’s unexplainable, and there are really no words that can be said, but that I am sorry. We will continue to pray for your son.
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Post by drumhead57 on Jan 28, 2019 8:37:57 GMT -6
Just donated. God bless
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Post by Johnkenn on Apr 17, 2019 18:45:22 GMT -6
In Slater's mom words...
There have been some new developments over the past week and a half. We have been terrified, but at least we have some answers to Slater’s ailments, even if they are not what we had expected, nor wanted. Slater has been vomiting and having head pain daily, and we have been doing every test and study we can to figure it out with his GI. We had hope that even with changing his formula, maybe it was as simple as that. If only things were so simple. About a month ago, he was put on TPN, (for Total Parental Nutrition), where he is not fed in the stomach but via his Central IV line in his chest, being fed via his blood. It requires him to be hooked up 24/7, and for us to get a new bag of fluids every night in the Med Room here at St Jude. Slowly over the weeks we’d go down on the TPN, from 24 hrs. all the way down to 16hrs. While going up on his new stomach feed formula (so he’s hooked up with two pumps and two bags, tethered).
Weekend before last, however, Slater’s headaches seemed a little different. Instead of a sharp pain he usually has that goes away after about 10-15 minutes once he vomits. this headache never really did. It was a full headache, much less intensity, but persistent. and all around instead of just a particular area. He just didn’t feel like playing much at all. and we felt it was off, enough to tell our oncologist in clinic appointment on Monday morning. What we didn’t expect is the urgency in which she took immediate action. She scheduled an MRI of the brain and face (to capture his sinuses just in case it was sinus related if he has allergies). We don’t normally do brain MRIs on our treatment protocol.
Tuesday morning, we had the MRI. Slater was under general anesthesia, for that. The risk of vomiting during anesthesia and aspiration, always makes us so worried. We sign the forms understanding the risk each and every single time he goes under. We were so worried, that this MRI could be our worst fears. You see, a secondary “C” is a very real risk for all the children undergoing treatment here. Just from Slater’s radiation therapy alone, 1 in 10 children will develop ANOTHER SECONDARY cancer from the radiation treatment. With the different chemotherapy drugs, each carry their own risk of secondary “C”. Slater has had about 10 different chemo. Not counting all the CT scans (a CT scan is about 100x the radiation of a single X-ray scan), the live X-ray scans, the regular X-ray scans. the radioactive dyes injected into his body for some scans, all of this is not without risk.
Tuesday afternoon our oncologist calls us with the results of his brain MRI - they were clear! Hallelujah! but they found a spot on one of his upper vertebrae on his spine. They need to investigate this spot, which they hadn’t seen before. We were a mess. She called us to tell us he will need another scan he hadn’t had before, a PET scan of his whole body, that also isn’t on our protocol, and another sedation scheduled the next day.
Wednesday we had the PET scan, it was clear! The spot they feel was old treated tumor, not new tumor. We were so thankful and rejoiced, thank you God! However, the PET scan did show esophagitis, he had been vomiting some bloody streaks from all the vomiting episodes, so they decided for him to stop ALL stomach feeds for a couple of weeks, and go back entirely 24/7 to TPN (IV feeds). I know Slater would be so sad, going back to 24 hr. hookup, he can’t carry his backpack with an IV bag of 24 hr. fluids on him. it restricts his mobility but hopefully his gut will heal, and we can start with stomach feed tubes again.
Thursday, we had a neurologist appointment (never had one before) he discovered Slater had optic disc pressure (Pappiledema). He said he has pressure in his head, pushing on his optic nerve, it can result in permanent blindness. or worse. He believes it is caused by one of his immunotherapy treatments, the isotretinoin (accutane). He said Slater needs to see an Ophthalmologist asap, so we were sent to the Eye Clinic in St Jude to which they confirmed both his eyes had optic nerve pressure (pressure behind his eye). She deemed it intracranial pressure - brain pressure. She doesn’t know how much pressure, and it is dangerous, and it is for Slater’s primary medical team to discuss next course of action. We were sent downstairs to see our oncologist who already had a plan in place.
Slater needed to be sedated for a third time, the very next day (3 sedations in 4 days), for a lumbar puncture (spinal tap) to see the spinal fluid pressure. That is how they see how much spinal fluid pressure he has, and if it is extremely high, they will remove spinal fluid to relieve the pressure in his brain. They removed just 5ml, enough to take a sample and send it off to the lab to test for other ailments to be completely thorough, to check for other types of “C”, meningitis, etc.
We returned from the procedure and were given medicine to help bring the swelling in his brain down, 2x a day, with a follow-up with neurology.
His diagnosis is Pseudotumor Cerebri, they feel brought on as a rare side effect (~1%) of isotretinoin (accutane). What this impact, is that they are stopping Slater’s isotretinoin. This is significant because it is part of his treatment to prevent relapse. Neuroblastoma is a very difficult disease to rid of, and recurrence is high. There is no known cure for a relapse. That “R” word for us is much scarier than the “C” word, because at least with “C”, we have treatment to fight it with, there are little options left for “R”.
we were supposed to start Course 5 of chemo/immunotherapy last Friday with his G-shot daily injections and admitted last Sunday evening to start his antibody treatment, and thereafter finish the course 5 and all of course 6 with the accutane. Instead we had delayed the start of the next round to get his brain pressure down, and unfortunately, we had to stop the accutane part of the treatment altogether. This means that we will not complete his treatment protocol. Our treatment will end after this round of antibody therapy, cut short 2 rounds of accutane.
Accutane is indeed the old “acne” medicine, but they found in very high doses, it takes cancer cells, and differentiates them, meaning, breaks them apart, and normalize them from mutated cells into normal cells! In these big scans, MRI, PET, MiBG, CT, X-ray, etc.. you cannot see individual cells. Only clusters, and we know all it takes is one single cell, as it’s how this all happened, from one mutated cell that replicated, and replicated.
Our amazing oncologist gave us the advice we needed to hear. We are so worried about him not getting the whole treatment, especially the part that helps prevent relapse, and she said we have to just put it behind us. We can’t change it, we have to move on, and let it go. She said she felt it was okay, she feels good he at least got 4 out of 6 treatment courses.
Unfortunately, the risk is too great to continue with accutane, and we don’t want him to lose his life over it, or brain damage or permanent blindness, so it is what it is.
If you’ve read this far, thank you, for being part of our emotional journey. A billion other things filled in the minutes and hours between scans, sedations, consultations, playing, and praying. We pray no other child and parent and sibling ever has to go through this journey. Please, God, help us to find a cure and heal our babies.
Shari.
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Post by drumhead57 on Apr 17, 2019 20:21:30 GMT -6
Donated. Thnx, JK
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Post by the other mark williams on Apr 18, 2019 0:46:09 GMT -6
Thanks for the update, Johnkenn . Even with our own experiences, just imagining the suffering that whole family is going through is just overwhelming. Thanks for providing the space to share stories.
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Post by ragan on Apr 18, 2019 1:20:19 GMT -6
I've got no words for any of this. The minute I try to make it my little boy in this situation my brain and heart almost explode and then my mind just rejects it outright. I can't put myself into these families' shoes even like 0.0000001% and all I can think to say is I'm so sorry.
Praying for this awful stuff to go the hell away and leave these sweet kids alone.
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Post by kcatthedog on May 14, 2019 3:05:37 GMT -6
After 425 days, as of today Slater is NED ( no evidence of disease), in zone 1 remission: they beat the big C and are packing up and heading home to FLA.
Great news for a great family!
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Post by Johnkenn on May 14, 2019 8:40:18 GMT -6
Wow! That is just fantastic!
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Post by drumhead57 on May 14, 2019 10:05:34 GMT -6
That's fantastic news, indeed. God bless them. I see the Go Fund Me goal has yet to be met, so more donations would be welcome.
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Post by ragan on May 14, 2019 11:01:10 GMT -6
EEEEEEFFFFFFFFFFFF YEEEAAAAHHHHHH.
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Post by the other mark williams on May 14, 2019 12:05:35 GMT -6
Holy smokes, this is great, great news. Neuroblastomas are crazy. So happy for them.
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Post by geoff738 on May 14, 2019 14:53:47 GMT -6
Amazing! Best wishes to Slater and his family. Home!!!
Cheers, Geoff
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Post by Martin John Butler on May 20, 2019 20:13:15 GMT -6
I'm so glad to hear this. It made me tear up a little. God bless the whole family.
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Post by kcatthedog on May 29, 2019 6:03:26 GMT -6
They all got home yeasterday and so wonderfully the community planned a big welcome including police ect., it was so big it was covered by the news.
You could see Shane and Shari trying to hold back the tears of joy and relief and for, as he said, the families they had left behind still at St Jude’s.
He said, we are home, but different: a very tough 450 odd days. Shari had vowed, she wasn’t coming home without her son Slater: don’t mess with her.
Welcome home guys !
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Post by category5 on Sept 18, 2019 16:54:12 GMT -6
Guys, I am humbled to read this thread. Thanks for all of your support and prayers, and thanks to John for sharing our story with the forum. We are at St Jude now, for Slater's 4 month follow up scans and we got good news today. We will have to do this anxiety filled trip every four months for the first year, then every six month after that, but G-d has blessed us and we have tremendous hope that he will continue to do so. I left my band, and my old life behind on a moments notice, and aside from trolling a late night forum or two haven't had much of a life outside of taking care of Slater for the last couple of years. St Jude made the experience somewhat bearable for us, and the kids literally cheered as we drove through the gates two nights ago. They make it so great for the kids, that they only remember the fun stuff. It's an amazing place, filled with love and guarded by angels, and we will be eternally grateful to them for saving my boy. If any charity deserves your consideration, it's this one.
Sincerely, thank you guys for the prayers and support. I know it made a difference. It's amazing what a close, supportive community you all have built here. Aside from the casual disagreements, and standard forum banter, we all really have each others' back, and that's really something to take note of.
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