Category: Parent Talk
Hi everyone,
I'm only new here, but was wondering, if anyone here has had to deal with a child at a hospital, or the idea of their child being sick.
I have an 8 month old daughter, and when she was 1 month, we found out that like me; she too had bilateral retinoblastoma.
I think knowing your baby has cancer is hard enough to deal with.
On top of that, she has had 6 rounds of chemo, and one lot of laser treatment.
The hospital she goes to, is 6 hours from where we live, and I can't even count how many times we have been back and forth for different reasons.
I must say, her treatment has worked so far, and her tumors have gone; though she will continue to have regular check ups or the next few years, because the can come back at any time.
So I was just wondering, if anyone else has hospital stories to share, or any other kind of health issues with their children, and how you handled it.
I know she is too young at the moment to understand what is happening, but she won't be in a couple years, and i'm not sure how we will go at that stage. So far she has just accepted everything that has happened to her, but now she is getting older, and starting to remember more, just taking her temperature makes her start crying.
O no! I'm sorry to hear that. I felt difficulty dealing with those things while my kids were smaller. but since I lived in the same city, where many hospitals are around, I haven't faced any travelling difficulties.
You don't have anyone to accompany you? I meant any relations? Brothers? sisters? or else, my suggestion is to move closer to the hospital area. so that you don't wana travel that much longer.
Raaj
I just sent you a PM in response to this, if you've not seen it already.
I have no personal experience of this, however I have a cousin who had luchemia when he was three. He had to go through several rounds of chemo plus radiotherapy, and as I recall he took it all in his stride and coped very well.
I think the crucial thing is support, do you have friends? family you can stay with when you have to visit the hospital? also what facilities do they provide for children and their families? It's also worth asking whether there is a support group in the area for children undergoing cancer treatment, so you can get to interact with people who are going through/have been through the same thing.
It's true that as your daughter gets older she will understand more of what is going on, but this will also be benefitial in that she will reach an age where you will be able to reason with her in terms of what is happening.
It's never going to be easy, but do take advantage of any of the services the hospital can provide, and also ask about availability of any outreach services.
good luck.
Thanks for the responses.
The traveling part isn't a huge issue, I have family members who are more than willing to help out with that.
Finding somewhere to stay while at the hospital is one of the hardest things, though while she was havin treatment, and had to stay at the hospital for at least 4 days, they were pretty good at finding somewhere close to the hospital for us to stay. But now that she onlygoes for check ups, it is usually only a couple hours at the hosital, thouh we do stay over night, so the traveling doesn't get too much on her.
I guess the best part about it all, is the hospital, is a children's hospital, so they know and understand a lot o what we are going through, as well as how to explain things in a child friendly way so to speak.
I believe they o have support groups, and that does help somewhat, tre are none around where we live though, which is one of our biggest disadvantages.
Welcome aboard newborn zoner! Can't say I have any hospital stories, but I am sorry your daughter got retinoblastoma and I do hope she spends the rest of her life cancer free!
I'll def pray for you guys. I've been in and out of the hospital throughout my childhood and teen years, so I can relate somewhat. If you ever need to talk, feel free to message me.
god bless,
Aloha
I am not a parent, but I just wanted to write and tell you my prayers are with you and your family.
You take care and God bless you and yours.
Thanks. Everything is going good now, for the most part, anyway. she still has full sight and everything is going fine. Though she is at the age now where she knows more of what is happening, and is a completely different person as soon as we walk into the hospital...I don't blame her though, I hate hospitals, too
I am sorry for herring that.
I hope she can get better.
Did they treat you good at the hospital?
they did not say anything for you being a blind parent.
let me know because I am always in fear that some one will question my abilities.
let me no in an email at babybuffalovanessuevega@gmail.com
Well our isnt as serious... My son has anaridia & nastagmus & hes too young to determine if he has glaucoma. We have gone to the hospital for a MRI which has to be done every 6 months & he also had a sonagram done to look for tumors & that has to also be done every 6 months. All my family lives in Houston,Tx, i live in Austin, Tx so i don't have any support or help while taking him there. His dad has been in Dallas so i don't got anyone to help me. If kinda frustrating, but it has to be done. I get overwhelmed because i thought i would have my family as my support group, but i was wrong. I don't like hospitals so i get a lil impatient while we are there. The hospital is for children so some of the staff is great there when my son is crying and all. Ive been there about 6 times & i still get lost there. Im just glad we havent stayed overnight because it would drive me crazy. Glad things are going good for y'all & she will get use to it as she grows so just let her know everything will be fine...
I also had retinoblastoma as a child & was treated. I also retained full sight although it returned in my brain when i was a teenager. I think your daughter will be like that towards the doctors & hospitals until she forgets all the treatments. My mother couldn't take me to the eye doctors until i was 10 without me crying & begging her not to. I was almost 3 when i was diagnosed so I remember a lot more than your daughter hopefully will. My mother always tells me how they had to have a nurse sit with me all the time or i would tear down my oxygen tent & rip out my IV's. I'm glad your daughter's cancer is in remission & i hope she is well.
Yes she is doing fine. We go for regular visits to the eye doctor for ceck-ups, and its sad seeing her, the way she just closes up once she knows where we ae. She will just sit there, and won't speak to anyone, then screams and screams when she sees the nurse with the eye drops.
But as far as the cance is going, so far she is still all clear which is excellent