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.
Hope everyone has had a great summer so far. I know we sure have.
Just a little update this evening. Tomorrow morning, we start day 1 of 5 back to back treatments. This will be followed by just 3 more treatments until the end of his plan. Next month, we get out final scans to tell is where we're at. We're all both very excited and very scared for these scans. Silas' last scan was a CT of the upper torso and abdomen. No new tumors were found, but this did not give us a clear sign of his cancer being gone. While the hospital's protocol is to have both a CT and PET scan every 12 weeks, they denied any further PET scans until his final. Now the question remains, what will we do after his treatment is over? So we are working actively with our Cigna Champion to find out the next steps so that we're prepared going forward.
As for Silas' path so far... He's finished all of his in-patient chemotherapy treatments. And, to my understanding, we no longer have any extremely harsh chemos left that compromise his immune system that require us to give him shots for 1-2 weeks after. This is a huge relief. While he started getting better with doing the shots, he definitely didn't appreciate being held down to have an injection each night in his legs. And we certainly didn't like doing it to him.
Silas' NG tube has also been removed. Unfortunately, not by choice. He nearly ripped it out himself at an appointment. And the doctor suggested just removing it and seeing if he would take his oral medications on his own. This choice also factored in the fact that he's had quite the appetite lately, so we don't have to pump him with food overnight when he's not been eating much. He's much happier without it, and he's been very good at taking his medicine orally.
All in all, things are going great. We just still have the scans looming over. We want more than anything to know his cancer is gone. But even if they determine he's in remission, we still need to watch him. Now, and for the rest of his life. It's scary to think about the impact this has had on him, and what this means for his future. But 13 months ago, we honestly didn't even know if he would be around today. We will always live our best life together with him, and our family. And we will always pray for just one more day.
Thank you all for being a part of our journey.
We are blessed. We are grateful. We are amazed.
July 5, 2018. One year ago our dear Silas was in bad shape. He was... dying in my arms. Yeah, that sounds dramatic, but how else would you describe it? He was in renal failure. Renal failure caused by a 10cm tumor blocking his ureters to his kidneys as well as his bowels.
He had emergency surgery July 6th placing nephrostomy bags to alleviate the fluid buildup in his kidneys, a catheter placed for dialysis, and was placed on heavy amounts of antibiotics, and morphine.
More surgeries to come the following week, bone marrow biopsy, a port placed all while he was in so much pain. They placed him on a PCA pump for his morphine. His kidneys, boy parts, leg were all completely swollen. He lost his ability to walk for months. He went into a depression and we felt we lost our son.
Slowly, with the help of his amazing doctor's, nurses, child life coaches, family, friends, strangers, and God he started to come back to us.
Silas has always been my fighter. My strong willed, stubborn, hard headed boy (beyond the average child). He knows what he wants and doesn't stop until he gets it. I think that has helped tremendously with this fight. The kid is tough. He has surpassed every obstacle he's faced. He has defied the odds. He is simply.. a miracle. It sure was a rocky year, but it's been a year.. a year of him getting better.. a year WITH HIM HERE!!
I can't exactly explain how it feels to look back and remember where we were a year ago and how it feels now.. it's the strangest feeling. Like, I still want to scream and cry for my poor baby for all he's been through and will go through moving forward... but then I see him and he's here, so much happier and not in pain. Although, I still don't feel like I can breathe a sigh of relief, because tomorrow is unknown. But today, he is here and I will stay right here, and kiss him, and hug him, and listen to his sweet voice over and over and over again.
"...With God, all things are possible."
Happy first day of Summer. Hope the weather is great where you are. It's been a hot one here, so far. I wanted to give everyone an update on what Silas has been up to.
On May 18th, our family attended the Runway to Hope Spring Soriee at the Rosen Shingle Creek. We had a great time participating in the event. The Runway to Hope foundation raised nearly $1.5 Million in one night. The money raised by Runway to Hope is used to help Central Florida families who are fighting Pediatric Cancer. Through the Runway to Hope Family Assistance Program, direct aid is provided to families who are in desperate need of financial support. You can learn more about the organization at https://www.runwaytohope.org/
The event is set up mostly as a fundraiser, but also a great little party for children like Silas. It was nice for him to interact with other kids who are going through the same thing as him. I can say he had a blast with the activities they provided for the event, and enjoyed walking the runway with his Child Life therapist Zuli.
As it is summer break for our daughter, my wife has been trying to do as much as she can with the kids. Silas has been able to make it to the beach a couple times already, something he hasn't done in nearly a year. The last time he was at the beach was just a few short days prior to us finding the tumor in his body. It's one of his favorite things to do, and I'm glad he's been in a decent enough state to enjoy it, even if it is for just a short time.
Treatment is still moving right along. We recently had CT scans done as part of his ongoing treatment, and we are pleased to announce that he still has no new tumor growth in his body. Unfortunately, the insurance company is not covering anymore PET scans until the end of his treatment, and we're not sure how they'll handle routine scans after his treatment has ended. The PET scan is an important scan that shows the cancer cells in his body. While we are certain no new tumor growth is occurring at this time, we can't determine if his cancer is gone, or nearly gone. We're praying that his final scans will tell us that he is in remission, but we won't know for a few more months.
As always, we thank everyone for their continued prayers and support for our family. It's been nearly a year now that we've been going through this, and it's hard to imagine life beyond this now. I can tell you that I'm looking forward to moving on and getting Silas caught up on some things he's missed so far like learning to swim, learning to ride a bike without training wheels, and many other things.
God Bless you all, and thank you for being a part of our journey this far.
I hope everyone is doing well and had a great Easter. I wanted to provide you all with an update on Silas and his progress.
We were able to have a fun Easter for the kids. We spent it with some great friends. We had a glow in the dark Easter egg hunt in the yard. We've gone out and picked some blueberries down the street at the blueberry farm. Silas was able to go and spend a night with his Noni and Papa in Ormond Beach for the first time in a year, at his request. And he's even had the opportunity to have a boat day thanks to my Aunt. There's been a few more things as well.
We're moving right along with his treatment. Unfortunately, he's in the hospital right now recovering from neutropenia after his last round of chemo, and he should be returning home tomorrow after being there for over a week. On Thursday of next week, he'll be returning for the same round of chemo. While it's a single overnight stay, we expect him to be admitted about 5-8 days later for being neutropenic again. It's tough because he really doesn't like being in the hospital. They do their best to keep him occupied, and for the most part he's in great spirits while he's there, but he would much rather be home. It's even harder for our family as a whole. My wife stays with him at the hospital primarily, and Chloe and I stay home so that I can work and make sure she gets to school. We're mostly living in two separate places.
However, according to our chart, he's only got 4 more of these specific chemo rounds for the rest of his treatment. Other than that, it's outpatient and nothing that will cause him to go into neutropenia. We're around 2/3 of the way through treatment, but we are seeing some light at the end of the tunnel. We're about another 4 weeks from his next evaluation and scans. We're praying that he's continuing in the right direction.
As always, we really can't thank everyone enough for their continued prayers and support. This journey has been extremely exhausting for us, and we've had a lot of great people step forward to help us carry the weight. It's truly amazing to have everyone as a part of our lives.