Child cancer or serioues illness.

[slow06]

Just got back from his Dr. appointment with the ophthalmologist, didn't get good news, his retina in his right eye is detached and he is blind in the right eye because of the mass (tumor), I was also told he has a mass in his left eye as well. Any chance of him retaining his vision in his right eye is gone, they are talking about removing his right eye, and possibly chemo for his left.

They want us to go to Duke Medical, but it is 3 hours away, and financially its going to be very hard. St Judes is about 10 minutes away, and I would still be able to go to work. I really don't know what to do at this point. My whole world got flipped upside down, I went in thinking he would be one of the 95% cure rates, but with it in both eyes, it drops. I feel lost.

 

[7998]

Your boy and your family are in my prayers.
My son started having 40-50 seizures a day when he was 2 yo. We went to 3 different hospitals trying to find out what was causing them. Long story short, after 3 years he was seizure free. We never did find the cause of them but they just disappeared. He will be 18 in March.
It is very difficult time for all of you. A few things I can tell you.
1.Your sons strength will amaze you.
2. Your own strength will be tested.
3. Have faith and expand your prayer circle.
4. If you don't like what you're hearing go for a 2nd 3rd or 4th opinion.

What is your boys name?

 

[BrunotheBoxer]

Just got back from his Dr. appointment with the ophthalmologist, didn't get good news, his retina in his right eye is detached and he is blind in the right eye because of the mass (tumor), I was also told he has a mass in his left eye as well. Any chance of him retaining his vision in his right eye is gone, they are talking about removing his right eye, and possibly chemo for his left.

They want us to go to Duke Medical, but it is 3 hours away, and financially its going to be very hard. St Judes is about 10 minutes away, and I would still be able to go to work. I really don't know what to do at this point. My whole world got flipped upside down, I went in thinking he would be one of the 95% cure rates, but with it in both eyes, it drops. I feel lost.

Your boy is going to make it. Now more than ever you must be strong and remain positive. Not for yourself but for your boy. He needs you now.

Feel lost for a short while then get up, get going and do what is best for him what ever it takes.

 

[01FR500]

**** any thought related to financials. My newborn son died in April, due to an infection that the doctors failed to recognize and treat despite my expressed concerns. Money, **** money, I'd give my life.
Doctors don't know everything and they often miss other options. You think differently than them and have different priorities. Second guess them and propose alternatives. Get second opinions and seek out the best. Obviously I don't have too much trust in doctors lately, but I think it is good to be informed and judgmental of what they tell you. They kept telling us that it was nothing while he was in the hospital until one morning they decided that it was life threatening and he was dead 12 hours later. I'm not joking, they ****ed us over bad. You need to claw and fight for the best. Anyone who tries to soothe you and tell you everything is going to be OK is naive. Fight now and fight hard for the best outcome. Oh, and **** any God too while I'm at it too, he won't help you.

 

[verbal]

I am sorry to hear that you and your family are dealing with this.

My daughter had open heart surgery at 8 months old. The surgery and her recovery was the most difficult thing I have ever dealt with in my life. My daughter was in the ICU for two weeks and in the hospital for a month. My wife never came home during that time and I would either sleep at the hospital or drive home every day. Every day was an emotional roller coaster.

We were lucky to have Children's Hospital of Philadelphia within an hour of our house. My wife and I knew that this was the best option available for my daughter's condition. There were plenty of families there that were traveling from all over the country however. It was heartbreaking to see so many people at such a low and difficult moment in their life.

You need to find the best care for your son that is available even if it means it is having to travel further. There are organizations that are there to help parents in your situation with travel accommodations, programs from your state to help financially, and programs through the hospitals to help.

You will find a way to get through this both emotionally and financially. Stay strong for your son and wife and you will all get through this with that much more love for each other.

 

[ON D BIT]

Take him to St Jude ASAP. As far as I know they will do everything they can to save your sons life and his sight. If they recommend him to go to Duke then go.

Prayers!!

 

[slow06]

After his appointment the director of St Jude in Charlotte called and had me bring him by. She confirmed everything that was said and ended up flying him and his mom to St. Judes in Memphis. I drove up tuesday. They might be able to save his right eye and lay his retina back down, but it is a small chance, his left eye has perfect vision and they are hopiing chemo will shrink the tumors. Tomorrow he will have a C-line put in and start chemo. We also find out the MRI results to make sure it has not seeded into his optic nerve.

Being here at St, Judes has put a lot of things in perspective. I appreciate all the support from everone here.

 

[Russo]

what's your son's name? we would like to pray for him

 

[slow06]

Anthony is his name, I appreciate it Russo.

 

[DAVESVT2000]

Good call on you and the hospitals part in getting him to Memphis asap.

Time is of the essence here in starting treatment.

Be prepared for a long road ahead over the next year, but it will all be worth it in the end.

 

[_Snake_]

Prayers sent for Anthony, you, and your family.

Please keep us updated.

 

[slow06]

Got the MRI results today, the cancer has not seeded or spread to his optic nerve or brain. They right eye will not have to be removed and if the retina lays back down, he will be able to see shapes and shadows out of it, the left eye will not have any effect. The C line was put in today and everything went good. This really hasn' slowed my son down, he still acts like a maniac, grabbing his bars on the crib and rocking it.

Tomorrow will be his first dose of chemo, he will be going through his treatments for the next 11 months at least.

I really can't say enough about St. Judes, they have went above and beyond with how they treat their payients,answering questions and providing a room to stay in and meals.

I will have to be going back to Charlotte for 2 weeks to finish some work, so my benefits roll over for my paid leave.

Thanks for all the thoughts and prayers, I will keep updating you guys as he continues his battle.

 

[OETKB]

This sounds like good news. They can fix retinas with lasers. I know because mine was detached two years ago, and I see perfect out of it now. Godspeed, brother.

 

[SVTdreamin04]

slow06, me being a father to two very young children, I can't imagine how scary this could be. All I can do is offer up thoughts and prayers.


Sent from my iPhone using Tapatalk

 

[ON D BIT]

St Jude is amazing and my favorite charity!! If you don’t know about it or Danny Thomas, take a look: https://www.stjude.org/about-st-jude.html

 

[BrunotheBoxer]

I told you. He’s gonna make it bro.

That’s which does not kill us makes us stronger.

 

[7998]

That's great news. We'll keep praying for Anthony and you guys.

 

[jconnor3]

It's amazing you spotted this I think! Being a new father to a 10-month-old myself, I feel for you man. I know this has to be tough and scary! Glad to hear some positive news for you!

 

[slow06]

Well, he had his first dose of chemo yesterday and his 2nd dose today. Yesterday he was worn out, he has been put under three times since tuesday. We went ahead and shaved his head so he doesn' try to put his hair in his mouth when it does start to fall out. Last night he had a fever of 104.8 and most of was due to the chemo, today he has had no fever.

He will be here for thanksgiving and Christmas, I'll be back in Charlotte Monday and return to Memphis in 2-3 weeks. He is a resilient little man.

Can' figure out how to post a pic on the forum with this new phone.

 

[MG0h3]

Are you using the app? Its easier there on the phone than from the laptop in my opinion.