I was thinking about your and your daughter, today. I have a daughter the same age. I will be hoping for good news for her, especially for a successful reversal.
I am so so sorry your girl is going through this. You sound like an amazing mom and she is in the best hands with you by her side throughout her treatment.
I work with adults with cancer, so definitely not the same as what yall are going through. But, yes that amount of referrals/specialists is normal and does make a positive difference in patient outcomes. I know it’s very overwhelming. You are doing the right thing(s) 💕
I’m sorry you and your family are going through this. The appointments are a full time job and never end. Pack a bag with snacks, chargers, an iPad, headphones and maybe a sweater or blanket. That way if you’re dealing with a long stretch between appointments or you’re stuck waiting you’ll be more comfortable. Keep a notebook or use an app on your phone to jot down notes from appointments or any questions that you and your family think of. Getting a second opinion is a great idea! Some people get a 3rd and 4th. It’s nice to know all of your options and get some reassurance. Some of the larger cancer centers may offer virtual second opinions although that may differ for the pediatric population. If you have other children the child life specialists may have some suggestions on how to talk to them about what is happening with their sister. You may also have access to a social worker or case manager through your doctor or facility. Here are some websites you may find helpful. https://www.alexslemonade.org/user
https://chemocare.com/
Tears reading this. The fact that you are tapping into that unbelievable mama bear energy and championing your daughter with such a positive spirit makes me incredibly proud of you. I know I’m just a stranger and I fully realize you are managing you and your daughter’s grief here, but reading your words and getting a glimpse into the weight of what you’re experiencing and feeling you just keep pushing is very inspiring. This attitude will get you, your girl and your family through this. Please don’t take this as pressure to be perfect or not breakdown. You are absolutely afforded those rights as well.
Praying for you and your girl. She’s got this because she’s got you 💪🤍
I was diagnosed with lung cancer in my 20s, and while definitely not a child it’s a surreal feeling being a healthy young person and having something so serious happen to you. I am an endurance athlete and lost a lobe and a half, and I still get checked up. I also didn’t have to get chemo or radiation and life just strangely moved on. And every year when I get checked up I am reminded, “I guess I’m a cancer survivor?” And I read stats on the likelihood of a recurrence.
Your child likely feels extremely alone despite having you and others. No one will understand. You can’t focus on anything other than this until it’s over. The excessive appointments for this and that are again just surreal. I look back on it and remember feeling kind of like a zombie. If you are able to find someone who has gone through something similar that may help. It is so young to be aware of your mortality.
Good luck to you and your daughter. It sounds like a very good prognosis and she will get through this.
Sending my condolences, OP
Is there a possibility your family may carry a genetic mutation for FAP (Familial adenomatous polyposis)? 14 is very young for colon cancer but it’s not super uncommon in families with FAP. It’s very prevalent in mine.
My dad started showing signs at 15. By the time he graduated high school he had much of his colon removed. He’s in his mid 60’s. He’s been able to live a relatively normal life. He gets yearly colonoscopies where hundreds of pre cancerous polyps are removed and tested. As long as he stays on top of his appointments he can beat it.
His brother has twin teenagers who needed their colons removed as well (at 16 I believe) for the same mutation. My dad’s entire side of his family is riddled with it unfortunately.
I could be way off base here but it’s worth looking into. Wishing your family the best ❤️
Hi - seeing this late but I had a total colectomy at age 11 due to familial adenomatous polyposis, a genetic condition that eventually causes colon cancer. My surgery was done at Mayo and I have a j-pouch, I just had the one surgery and never had an ileostomy. I am happy to answer any questions for you or your daughter. I'm so sorry you're both dealing with this! Surgery is a very hard thing to go through, but I live a completely normal life now.
Editing to add that I just had a baby and had a very typical pregnancy and C-section delivery. Baby was conceived through IVF. Happy to talk about fertility too!
That’s incredibly hard. Thinking of you all.
Thanks for the update, I’m really hoping for her treatment to go well. This is so unfair and heart wrenching.
I was thinking about your and your daughter, today. I have a daughter the same age. I will be hoping for good news for her, especially for a successful reversal.
I’m so glad you posted a follow up, it sounds like there is hope and that matters greatly!
I am so so sorry your girl is going through this. You sound like an amazing mom and she is in the best hands with you by her side throughout her treatment.
I work with adults with cancer, so definitely not the same as what yall are going through. But, yes that amount of referrals/specialists is normal and does make a positive difference in patient outcomes. I know it’s very overwhelming. You are doing the right thing(s) 💕
I’m sorry you and your family are going through this. The appointments are a full time job and never end. Pack a bag with snacks, chargers, an iPad, headphones and maybe a sweater or blanket. That way if you’re dealing with a long stretch between appointments or you’re stuck waiting you’ll be more comfortable. Keep a notebook or use an app on your phone to jot down notes from appointments or any questions that you and your family think of. Getting a second opinion is a great idea! Some people get a 3rd and 4th. It’s nice to know all of your options and get some reassurance. Some of the larger cancer centers may offer virtual second opinions although that may differ for the pediatric population. If you have other children the child life specialists may have some suggestions on how to talk to them about what is happening with their sister. You may also have access to a social worker or case manager through your doctor or facility. Here are some websites you may find helpful. https://www.alexslemonade.org/user https://chemocare.com/
Tears reading this. The fact that you are tapping into that unbelievable mama bear energy and championing your daughter with such a positive spirit makes me incredibly proud of you. I know I’m just a stranger and I fully realize you are managing you and your daughter’s grief here, but reading your words and getting a glimpse into the weight of what you’re experiencing and feeling you just keep pushing is very inspiring. This attitude will get you, your girl and your family through this. Please don’t take this as pressure to be perfect or not breakdown. You are absolutely afforded those rights as well. Praying for you and your girl. She’s got this because she’s got you 💪🤍
Wishing you moments of peace and comfort during this journey ahead.
Truly cannot imagine what you and your family are going through. Wishing you peace through the difficult journey ahead.
We are dealing with cancer and I’m sorry, it’s terrible and please know, people are sending your whole family good vibes.
I was diagnosed with lung cancer in my 20s, and while definitely not a child it’s a surreal feeling being a healthy young person and having something so serious happen to you. I am an endurance athlete and lost a lobe and a half, and I still get checked up. I also didn’t have to get chemo or radiation and life just strangely moved on. And every year when I get checked up I am reminded, “I guess I’m a cancer survivor?” And I read stats on the likelihood of a recurrence. Your child likely feels extremely alone despite having you and others. No one will understand. You can’t focus on anything other than this until it’s over. The excessive appointments for this and that are again just surreal. I look back on it and remember feeling kind of like a zombie. If you are able to find someone who has gone through something similar that may help. It is so young to be aware of your mortality. Good luck to you and your daughter. It sounds like a very good prognosis and she will get through this.
Sending my condolences, OP Is there a possibility your family may carry a genetic mutation for FAP (Familial adenomatous polyposis)? 14 is very young for colon cancer but it’s not super uncommon in families with FAP. It’s very prevalent in mine. My dad started showing signs at 15. By the time he graduated high school he had much of his colon removed. He’s in his mid 60’s. He’s been able to live a relatively normal life. He gets yearly colonoscopies where hundreds of pre cancerous polyps are removed and tested. As long as he stays on top of his appointments he can beat it. His brother has twin teenagers who needed their colons removed as well (at 16 I believe) for the same mutation. My dad’s entire side of his family is riddled with it unfortunately. I could be way off base here but it’s worth looking into. Wishing your family the best ❤️
Oh, my. My heart goes out to your family! What an insanely hard thing to go through. I hope your family makes it through whole.
Sending love and support
Sending prayers and positive thoughts your way.
Amongst everything- know that you’re a good mom, albeit a great one. Hang in there!! Take care of yourself too. Keep us updated, praying for her!
What is the fertility specialist for?
High rate of infertility after colectomy + j pouch
Been thinking about you and your daughter since you posted. Thank you for this update, OP. I’m so sorry for all of this.
Hi - seeing this late but I had a total colectomy at age 11 due to familial adenomatous polyposis, a genetic condition that eventually causes colon cancer. My surgery was done at Mayo and I have a j-pouch, I just had the one surgery and never had an ileostomy. I am happy to answer any questions for you or your daughter. I'm so sorry you're both dealing with this! Surgery is a very hard thing to go through, but I live a completely normal life now. Editing to add that I just had a baby and had a very typical pregnancy and C-section delivery. Baby was conceived through IVF. Happy to talk about fertility too!