Our 2yr old has bilateral optic glioma extending to the chiasm with significant growth and it's likely we will be starting chemo soon.
We have insurance and the deductible is high (but has been met for this year). Is anyone able to offer some input on how much one can expect to pay out of pocket for 18 months or so of weekly chemo? I suspect there is quite a range - but I've been reading of some nightmare scenarios - where the chemo is covered but all the support meds and equipment are not...Where people fight the insurance company tooth and nail over every dime.
We have three kids and the bills everyone else does who owns a home. I had a recent hospitalization and minor surgery and it looks like we could be on the hook there for at least $20,000 out of pocket. So - of course, we're going to spare no expense to treat our daughter - but we have no idea what to expect. 10K out of pocket? 50K? 100K??...If my wife is forced to leave her job to attend our daughter's treatments we could be in serious trouble.
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Financial Costs of Chemo for Glioma?
- By KatiesDad1
- Posted October 16, 2009 at 12:34 am · 5 replies
- In NF1 and children
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- By luvmyNFboys
- Posted October 16, 2009 at 9:07 am
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First off, I am very sorry for your wifes medical problems and now your precious daughter has an optical glioma. My son turned 2 in March. In February we found that he had an optical glioma that goes back to the chiasm. It was protruding his eye out 3 mm and was cuasing him to be blind in his right eye. By April we were going through weekly chemo. We are set up on a 13 month treatment plan. I can tell you we have spent approx $4500 to date and we are not quite half way through. Our deductible wasnt met though. Ours was $750. Thankfully the sametime my son was starting with all the doctors appointmens my husband changed jobs and got better insurance. With my son we had a 10 week induction period. It was eery week for 10 week. Than he had a 2 week break. He is now on maintenance which is 4 weeks on 2 week break. He gets MRI's after every 2 cycles. MRI's are 100% covered on our insurance. Our weekly copay is $40 specialist payment. But than there is a facility charge I didnt find about for months. It is $41/wk I would call your insurance and find out what is covered. Also we just got done doing a fundraiser for our son. As soon are you are able I would strongly suggest doing one. You can email me at chemo4kyle at yahoo dot com if you would like any information/help on what we did. We had such a good response we are doing another in the spring. When you get going you should be assigned a social worker (at least our faciltity did) if they dont tell you about hopekids ask. It is a great organization that does amazing activities for the kids and families. All at no cost to the parents. You can look up their website. If you are in the states you can deduct medical expenses off your taxes if you itemize. That is why I know how much we have spent because it is better to keep track as you go. Also you can deduct medical miles so I keep track of those.
If you need anything or I can help be of support please feel free to email me. I understand the stress and worry as we are still going through it. Maybe what we have gone through so far can help you.
May Gob bless you through this journey.
Brittney
mom and wife to my NF boys
- By luvmyNFboys
- Posted October 16, 2009 at 9:18 am
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sorry me again. I forgot one thing. My husband and I have been able to work through this so far. My work is flexible and I work 4 -10 hour days. And my husband works one weekend day so has one weekday off so that is when we do treatment. Our sons chemo is a low dose so he hasnt really gotten sick. We have been in ER 3 timesso we usually miss the next day. My son seems to like going at 10pm! ha ha We both go to treatments and it makes it go so much smoother. My husband tends to our son while I talk with doctors, get his blood counts, discuss the results and any questions we have. Plus since they are so little it is nice if you have to run to the restroom go get some lunch or a snack. Plus it aleviates (sp?) a lot of stress off one parent. I have taken him by myself and it is just a little added stress. Sorry to post so much or so long I just keep thinking of things. Things I would have found helpful.
- By KatiesDad1
- Posted October 16, 2009 at 8:09 pm
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Thank you so much. This is exactly the type of information we find very helpful. A major wrench in all this for us is I am forced to travel for my job,,,Heavy at times.
Is it the type of thing where you can go for the chemo treatments on Friday (allowing them to have the weekend to recover)?
We have also thought about fundraising...I know we'll probably be forced to do it - but I'm a little afraid of asking for that kind of help. I get the feeling we won't be after getting that first big treatment bill.
Have you found your insurance pays for additional medications (such as anti nausea drugs, etc)? I've heard some these can be very expensive.
- By luvmyNFboys
- Posted October 16, 2009 at 9:07 pm
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Our son is on Zofran for anti-nausea, an anit-biotic on the weekends to help with pnuemonia (being on chemo they are more prone to get it. Our son got it the first of Sept) and then the numbing cream so they can access his port for treatment. It is ALL covered by insurance. We did have our son in chemo on Friday so he could recover. Plus that was my husbands day off. Now his day off has changed so we changed his chemo. I liked Friday much better.
With our son he is on a very low dose of chemo so he doesnt tend to get sick. So hopefully your little girl wont either.
With the fundraiser. I wasnt one to ask for help either. I have worked hard to be self-reliant my whole adult life. I was just going to do a yard sale. But then my sister made a flier and it got spread all over. I set up the chemo4kyle email and I had people emailing me to drop off donations etc. We had so much stuff we are having another one in feb. I was overwhelmed by the number of people that simply gave us $. Total strangers I didnt even know. I set our son up with a caringbridges website. You can creat one also. Please email me if you want to talk more in depth about anything. We spent almost $5000 before I got the fundraiser going. If you have a large medical bill from you I would encourage you to do the fundraiser soon rather than later. It is amazing peoples reposnse when they find out a child is going through chemo.
If I can think of anything I will let you know. And if you think of anything please email me or post here.
- By sueburke
- Posted November 12, 2009 at 8:09 pm
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Blessings to your little one. When my daughter went through Chemo, she never got sick! Watched lots of Disney movies (especially Lion King) .
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