This is my grandson, Silas Cipollone, he is only 4 years old and this week has been diagnosed with stage 4 Alveolar Rhabdomyosarcoma, a rare and agressive childhood cancer...He has a tumor in his lower abdomen and recent PET scan results show that cancer has spread to his spine.
Read about Rhabdomyosarcoma here:
Silas started Chemotherapy on July 13, 2018 and it will continue for 54 weeks. Once the tumor has shrunk, he will undergo surgery to remove it then radiation therapy to kill off any lingering cells in hopes that it doesn't relapse. In addition he may need reconstructive surgery, depending on what the tumor is attached to. After treatment he will need to be monitored frequently to make sure the cancer doesn't reoccur. As of today, July 19, 2018 Silas isn't able to walk without pain and may need a wheelchair and or walker to assist him and physical therapy to get him mobile again. All of this makes this GoFundMe project so very vital to this family.
Silas was going to start VPK in the fall and his mommy was looking forward to moving back into the workforce after being a stay at home mom for 4 years. All of that has now changed. Silas will be undergoing chemo for 54 weeks and his immunity to fight infection will be very low, he will not be able to go to school and his mommy will remain a stay at home mom as long as he needs her.
His daddy and mommy will have a long struggle ahead. Their expenses have already started mounting and will continue for years to come. In addition to the medical bills, they will need to make many changes to their home in order to care for an immune compromised child.
Please give what you can, share this with everyone and pray for him and his family. You can read more about his story at the link posted below.
I wanted to take the time again to thank everyone again for your generosity, and the prayers that are being said for our little boy. I also wanted to provide an update on what we've been doing in the last couple of weeks.
We had an amazing September (which is also Childhood Cancer Awareness Month). We participated in the proclamation of Childhood Cancer Awareness Month with Mayor Bryan Nelson and the rest of the city commissioners with the City of Apopka, which also included the Apopka City Hall being lit up in Gold for the two following nights. It was amazing to see the community come together to make this happen.
As for our treatment, he is continuing to take his chemo treatments like a champ with minimal side effects. Silas underwent his first evaluation just a couple of weeks ago, and we are happy to say, we are making progress in the right direction. According to his scans, his cancer cells have reduced by 50%, his bone marrow is now cancer free, and his tumor has shrunk to about a third of the size it was when he had his original diagnosis. We could not have been happier to hear this amazing news. And while we are celebrating this milestone, we are still praying for continued progress, as there are still chances the cancer becomes immune to his treatment and comes back even more aggressive. We continue to live day to day, praying for ongoing miracles and an overall cure.
So, the roadmap now has some very exciting, but very scary things ahead. His next evaluation will be in about 3 or 4 weeks, and the oncology and surgeon teams will be evaluating his tumor for removal. It has shrunk to a size where consideration for removal is happening, but we have to wait for the next set of scans before the finalize the plan. The oncology team has assured us that the next set of scans will go before the tumor board at the hospital, and the surgical team will begin planning their procedure, which will probably be only a couple of days after. This is amazing, but very scary, as the surgery will be highly invasive. Because of the amount of area they need to work, Silas will have a large incision in his abdomen. We hope that the procedure goes well, and that they are able to remove all of the tumor from his body in one shot. Recovery will be about two weeks.
After his recovery, he will begin radiation treatment. Again, we're happy to be moving forward, but very scared of things to come. We ask that everyone continues to keep Silas in their prayers, and spread the word to everyone of his journey. We will continue to update as we have more information.
Thank you again, for everything you do. God bless.
We have returned home recently, and are adjusting to the way things are going for the time being. Silas has shown progress so far through his treatment, but we still face a long road. We have been put on a weekly schedule for chemotherapy treatments, and go every Thursday to the hospital. His body's reaction to the meds have been great so far, with minimal side effects. The tumor, while still very present, is shrinking. This has allowed for Silas to have his nephrostomy tubes removed. We will be getting another evaluation in 4 or 5 weeks, and pray to see a decline in the presence of cancer cells in his body as well.
My son has shown incredible strength through all he has gone through so far, and continues to do so every day. Since being admitted to the hospital on July 5th, he's been unable to walk due to the pain the tumor has caused on his legs. But that hasn't stopped him from learning to get around by crawling, which he has started doing recently to get around the house. He will continue to go through physical therapy along side of his chemotherapy treatment, and we hope that someday soon he will be back on his feet. He is a fighter, and has shown me that even when being faced with a life-threatening disease at such a young age, he is stronger than we could ever imagine.
Again, we can't thank everyone enough for their support through all of this. While we still have a long road ahead, and there is still uncertainty of the outcome we face, we are blessed to have everyone in our lives. Thank you, from the bottom of our hearts.