rockpile Posted September 5, 2018 Share Posted September 5, 2018 My daughter, Nikki, AKA Nicole, AKA Baby Rock was an annual companion to TBDAHOT while she was still in college over a decade ago. Since then she has gotten married and has two beautiful children. Her 17 month old son (my youngest Grandson) was diagnosed with high risk Pre-B ALL Leukemia just over a month ago, and during testing also found a rare genetic mutation called Ph-like-ALL. I have pasted in a portion of his story from his Go Fund Me page, and a link if you are able and inclined to provide help. Many expenses NOT covered by health insurance, are very draining. At least go to the link and read his story. https://www.gofundme.com/naamans-fight-vs-leukemia Naaman’s Fight Against LeukemiaHe has been receiving treatment from a wonderful group of doctors and staff at Yale-New Haven Children’s and the Smilow Cancer Hospital. They have laid the groundwork for his treatment plan, which is an intense 6-month period with a total 2-3-year treatment timeline. We are all hopeful for his recovery and understand how difficult a period this will be for not only Naaman but his family as well.Why gofundme?Naaman’s parents, Nicole, Neil and their 4-year-old daughter Nadine have had several financial burdens placed on them. During this challenging time their incomes will be reduced to one. There are also several costs beyond the healthcare bills as well as the unknowns needs that undoubtably will arise in the future. We hope that any donations from family, friends as well as others will help alleviate some of the financial burdens they will face.We thank each one of you for your continued support of our beloved Cheeky and hope for his full recovery. 1 1 Link to comment Share on other sites More sharing options...
Doc Posted September 5, 2018 Share Posted September 5, 2018 Done and best of luck to all of you! Oh and cute kid! 2 Link to comment Share on other sites More sharing options...
rockpile Posted September 5, 2018 Author Share Posted September 5, 2018 Thanks, Doc! 1 Link to comment Share on other sites More sharing options...
Just Jack Posted September 5, 2018 Share Posted September 5, 2018 54 minutes ago, rockpile said: and during testing also found a rare genetic mutation called Ph-like-ALL. I heard it's passed on by people that do fund raising walks but spend most of time taking pictures. Link to comment Share on other sites More sharing options...
Pine Barrens Mafia Posted September 5, 2018 Share Posted September 5, 2018 Aw man, send along my best to bbrock and baby 1 Link to comment Share on other sites More sharing options...
Gugny Posted September 6, 2018 Share Posted September 6, 2018 8 hours ago, Just Jack said: I heard it's passed on by people that do fund raising walks but spend most of time taking pictures. Time and place. Neither. 1 Link to comment Share on other sites More sharing options...
KD in CA Posted September 6, 2018 Share Posted September 6, 2018 9 hours ago, rockpile said: He has been receiving treatment from a wonderful group of doctors and staff at Yale-New Haven Children’s and the Smilow Cancer Hospital. You're in the best hands. When my daughter had a brain tumor 5 years ago, the team at YNHC/Smilow did an amazing job and took care of us big time. Good luck. p.s. don't forget the silver lining: Pepe's is just a few miles away. 1 Link to comment Share on other sites More sharing options...
Just Jack Posted September 6, 2018 Share Posted September 6, 2018 9 hours ago, Gugny said: Time and place. Neither. Its an joke between me and Rock which is why you don’t understand it. Link to comment Share on other sites More sharing options...
rockpile Posted September 6, 2018 Author Share Posted September 6, 2018 Just keep the in jokes between you and my MS, OK? Link to comment Share on other sites More sharing options...
Just Jack Posted September 8, 2018 Share Posted September 8, 2018 Ok 1 Link to comment Share on other sites More sharing options...
rockpile Posted September 18, 2018 Author Share Posted September 18, 2018 (edited) They have created a new website, where you can read about my Grandson Naaman's progress, donate to his GoFundMe account, share your stories, and provide information to you about childhood cancer and treaments. I am taking a BIG risk sharing it on this forum, so please do not make me regret it! https://teamnaaman.com/ Thanks, Rockpile Edited September 18, 2018 by rockpile add link Link to comment Share on other sites More sharing options...
Doc Posted September 18, 2018 Share Posted September 18, 2018 Just curious, did they name him after Naaman Roosevelt? 1 Link to comment Share on other sites More sharing options...
billsfanmiami(oh) Posted September 18, 2018 Share Posted September 18, 2018 Happy to donate. Just over two years ago we lost my mother in law to AML leukemia. We also have a 20 month old so this really hits close to home. Some very close friends of ours went through cancer with their first little guy around the same age. There were certainly some trying times, but now he is a happy & healhy 5 year old and you’d never know he was a cancer survivor. Modern medicine is pretty amazing. Sounds like your family is in great hands with the medical care. I wish you all the best! 1 Link to comment Share on other sites More sharing options...
Just Jack Posted October 22, 2018 Share Posted October 22, 2018 How's it going? Link to comment Share on other sites More sharing options...
rockpile Posted October 30, 2018 Author Share Posted October 30, 2018 On 9/5/2018 at 1:34 PM, rockpile said: My daughter, Nikki, AKA Nicole, AKA Baby Rock was an annual companion to TBDAHOT while she was still in college over a decade ago. Since then she has gotten married and has two beautiful children. Her 17 month old son (my youngest Grandson) was diagnosed with high risk Pre-B ALL Leukemia just over a month ago, and during testing also found a rare genetic mutation called Ph-like-ALL. I have pasted in a portion of his story from his Go Fund Me page, and a link if you are able and inclined to provide help. Many expenses NOT covered by health insurance, are very draining. At least go to the link and read his story. https://www.gofundme.com/naamans-fight-vs-leukemia Naaman’s Fight Against LeukemiaHe has been receiving treatment from a wonderful group of doctors and staff at Yale-New Haven Children’s and the Smilow Cancer Hospital. They have laid the groundwork for his treatment plan, which is an intense 6-month period with a total 2-3-year treatment timeline. We are all hopeful for his recovery and understand how difficult a period this will be for not only Naaman but his family as well.Why gofundme?Naaman’s parents, Nicole, Neil and their 4-year-old daughter Nadine have had several financial burdens placed on them. During this challenging time their incomes will be reduced to one. There are also several costs beyond the healthcare bills as well as the unknowns needs that undoubtably will arise in the future. We hope that any donations from family, friends as well as others will help alleviate some of the financial burdens they will face.We thank each one of you for your continued support of our beloved Cheeky and hope for his full recovery. Naaman is a trooper, but a couple months of tests, shots, transfusions and chemo are not easy on him or his family! Please keep him in your prayers! Link to comment Share on other sites More sharing options...
rockpile Posted November 19, 2018 Author Share Posted November 19, 2018 Naaman is home after three days of intense chemo treatment. He is understandably irritable and cannot keep food down. Most food tastes bad to him anyway! He and his parents are fighters and aggressively treating his leukemia. His story (journal), a link to GoFundMe, and information about childhood leukemia can be found here: https://teamnaaman.com/ Naaman is Old Testament, Doc! I never noticed the Bills Naaman football player until you pointed it out! Ironically Naaman was a warrior cured of Leprosy after being told by the prophet Elisha to bathe seven times in the Jordan River. I wish it was that easy today. He will be in therapy for a few years, and odds say he can be cured. 1 Link to comment Share on other sites More sharing options...
Doc Posted November 19, 2018 Share Posted November 19, 2018 We're all pulling for the little guy! 1 Link to comment Share on other sites More sharing options...
BuffaloBill Posted November 20, 2018 Share Posted November 20, 2018 18 hours ago, rockpile said: Naaman is home after three days of intense chemo treatment. He is understandably irritable and cannot keep food down. Most food tastes bad to him anyway! He and his parents are fighters and aggressively treating his leukemia. His story (journal), a link to GoFundMe, and information about childhood leukemia can be found here: https://teamnaaman.com/ Naaman is Old Testament, Doc! I never noticed the Bills Naaman football player until you pointed it out! Ironically Naaman was a warrior cured of Leprosy after being told by the prophet Elisha to bathe seven times in the Jordan River. I wish it was that easy today. He will be in therapy for a few years, and odds say he can be cured. Thanks for sharing. 1 Link to comment Share on other sites More sharing options...
mead107 Posted November 20, 2018 Share Posted November 20, 2018 ????? 1 Link to comment Share on other sites More sharing options...
rockpile Posted December 27, 2018 Author Share Posted December 27, 2018 Cheeky was able to get through his latest treatment and come home to celebrate Christmas. Life is a roller coaster, though for his whole family. Nicole told me she cannot tell me in the morning what her calendar will be for the afternoon. She is a fighter though, and has passed that on to "Cheeky". Looking forward to a positive New year, as his chemo treatments continue. He filled out quite a bit, and has had fewer melt downs. I imagine chemo is like steroids, his moods sometimes are Banner keeping the Hulk at bay! He is learning to say "football", Buffalo" and "Ay-Ay Ay Ay! Merry Christmas, Happy Holidays, and a very Happy New Year to all. Rockpile 2 1 Link to comment Share on other sites More sharing options...
teef Posted December 27, 2018 Share Posted December 27, 2018 everytime i complain how my life is going, i just have to remember some families have it much harder than mine. these pictures are hard to look at. god i hope everything goes ok. 3 Link to comment Share on other sites More sharing options...
rockpile Posted December 27, 2018 Author Share Posted December 27, 2018 (edited) 2 hours ago, teef said: everytime i complain how my life is going, i just have to remember some families have it much harder than mine. these pictures are hard to look at. god i hope everything goes ok. You got that right! My daughter and son-in-law are my heroes. They deal with this 24 x 7 and do not complain. She gave up her career to care for him and son-in-law now has two jobs. This makes my MS seem like a cake walk! p.s made it through his lumbar puncture today! Edited December 27, 2018 by rockpile Link to comment Share on other sites More sharing options...
rockpile Posted January 25, 2019 Author Share Posted January 25, 2019 (edited) Cheeky is in another phase of treatment and doing as well as can be expected! team naaman Edited January 25, 2019 by rockpile 2 Link to comment Share on other sites More sharing options...
Doc Posted January 25, 2019 Share Posted January 25, 2019 Great to hear Rock. 1 Link to comment Share on other sites More sharing options...
rockpile Posted January 30, 2019 Author Share Posted January 30, 2019 On 1/25/2019 at 4:04 PM, Doc said: Great to hear Rock. It is a long road, but he is moving forward. I HATE being six hours away. Luckily Cheeky has wonderful parents and very good support from church, friends and family. 1 Link to comment Share on other sites More sharing options...
Just Jack Posted March 24, 2019 Share Posted March 24, 2019 Any updates on this? Link to comment Share on other sites More sharing options...
rockpile Posted April 1, 2019 Author Share Posted April 1, 2019 (edited) Sometimes the cure is worse than the disease. "Cheeky" has been under sedation for a couple weeks, fighting fighting ALL Leukemia with chemo cocktails, transfusions, and other various side effect maladies such as liver swelling, fluids filling his abdomen, kidneys barely working, and the "corona" virus. His doctors say "he has turned the corner", but of course that can change any time. We are thankful the downward swing is stopped for now. He is slowly being brought out of sedation, so know he is also fighting prescription drug withdrawal If you want, you can follow his story here: Cheeky's Battle or on FB at "Team Naaman". Please say a prayer for my grandson and his family. Edited April 1, 2019 by rockpile Link to comment Share on other sites More sharing options...
Cripple Creek Posted April 1, 2019 Share Posted April 1, 2019 Kid is a fighter, Rock. 1 Link to comment Share on other sites More sharing options...
billsfanmiami(oh) Posted April 1, 2019 Share Posted April 1, 2019 What a tough little guy. Sending prayers for continued improvement. Good friends of ours battled cancer with their then 2 year old. He just had his 5th birthday and you’d never in a million years know he was once sick. There is light at the end of the tunnel, even if it’s hard to see it sometimes. 1 Link to comment Share on other sites More sharing options...
Doc Posted April 1, 2019 Share Posted April 1, 2019 Keep on fighting! 1 Link to comment Share on other sites More sharing options...
rockpile Posted April 2, 2019 Author Share Posted April 2, 2019 (edited) We are going up to see him, but if he's still in Pediatric ICU (PICU), we won't actually "see" him. We are helping our daughter and son-in-law and spending time with Cheeky's big sister. It is hard to help from six hours away! Everyone is projecting those positive vibes, and his PARENTS ARE MY HEROES for focusing on only good things. The power of prayer is underestimated. Edited April 3, 2019 by rockpile Link to comment Share on other sites More sharing options...
rockpile Posted April 3, 2019 Author Share Posted April 3, 2019 Cheeky is still in PICU, but is no longer in critical condition. He cannot talk but he pantomimed he wanted his Captain America mask on. I now there are ups and downs, but I will still celebrate the good news. He will still have to stay in the hospital, perhaps for months. "Cheeky" 1 Link to comment Share on other sites More sharing options...
Misterbluesky Posted April 3, 2019 Share Posted April 3, 2019 What a tough road for him and the family.God bless,stay strong and think positive. Thanks for the updates. Kevin 1 Link to comment Share on other sites More sharing options...
rockpile Posted April 8, 2019 Author Share Posted April 8, 2019 (edited) Update: After a few weeks under sedation, "Cheeky" is slowly waking up. He is out of PICU and just starting to eat a little (apple sauce and yogurt - soft foods) Once he can keep food down and his liver is healthy again I will feel better. He is talking a little, but is still pretty "out of it". It is a merry-go-round because it will take 6-8 weeks to make him strong again so they return to chemo to keep fighting the cancer. It is an odd thought that the goal is to make him well so they can poison him again. It is the only way to kill all the cancer! Everyone is staying positive. Prayers are requested. You can follow his story on FB, by searching for "Team Naaman". God Bless! Rockpile Edited April 9, 2019 by rockpile add photo 2 1 Link to comment Share on other sites More sharing options...
rockpile Posted April 18, 2019 Author Share Posted April 18, 2019 We went up for the weekend to CT, and spent a lot of time with "Cheeky" at the Smilow Cancer Hospital in New Haven. He has become more responsive and interactive, but his condition still varies day to day. We spent as much time with him and his sister, "Deanie" to try to give my daughter and son-in-law a bit of a break. When he first saw me in my Avengers t-shirt, he perked up and started pointing at the heroes, especially the Hulk. He is eating a little but still is wired and tubed up. We were able to have him placed in a wagon and we walked through the open air wellness garden. There is little we can do from six hours away, but we do what we can. After Dad took over at the hospital, we got to spend some time with my daughter, had our granddaughter do a sleepover at the hotel, took her to an egg hunt, and went to church on Palm Sunday. We keep praying and are thankful he is out of intensive care. It was pretty scary a few weeks ago. 3 Link to comment Share on other sites More sharing options...
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