A couple of weeks ago we got a letter from our insurance that the portion they have covered for the Burzynski Clinic for a year has now been denied and paid in error. That they never knew it was a clinical trial. My gosh!!!!!! What insurance partially pays for a treatment for a year and then retracts and wants all their money back? Ahhhhhhhhhhhhhhhh!
Our insurance about a year ago started paying for a portion of some of the Burzynski charges, but did not cover the year before of what we have paid out. We still were happy that some of the blunt of the financial burden was taken away from us at that time and we could breathe somewhat even though they were not paying 100%. But now our future hopes of that the insurance would cover more have been crushed.
We immediately appealed to our insurance and provided all requested paperwork, but last week we learned that our appeal has been denied. Insurance feels that the clinical trial is not necessary because there is an acceptable treatment for this type of tumor, radiation; according to them. Little do they know that radiation does nothing for this type of tumor. UGH! I want to scream it in their faces!!
So Ryan and I are working on getting help to deal with this huge bump in the road.
Kassidy's ANP dose on bag 1 is now 300ml. She's had a bit of trouble with this dose causing quite a bit of nausea. Almost every morning she has had to take zofran to go about the day. Strong smells immediately sent her into vomiting mode. She can't even ride the bus home from softball games because of the sweaty smells of the baseball & softball team combined. She was so bummed about this! But she still tries to make it to most games, she loves cheering and help coach her team on.
This Monday, we had a game against Gorman HS and Kass was helping put softballs on the tee for batting practice before the game. Well, while she was doing so she started feeling sick and got up and moved over to throw up in one of her handy dandy vomit bags. At the same time she got a seering pain in between her eyes, right by her forehead. So bad, she started screaming and the girls and coaches came to her aid. She proceeded to black out and fell over. I got a call from coach Livreri a bit panicked so I immediately flew up to the school.
When I got there, Kass looked much better according to all of them. We applied ice to her head and put her in the shade. I wanted to take her to the ER, but she said she felt much better and wanted to stay and watch the game. I throughly assessed her and she truly looked ok so I stayed with her just in case. After we got home again she got a big headache again so we gave her IV decadron and advil and it lessened it enough she could go to sleep. That next morning she stayed home from school because her headache was still at a 4. She woke up late and ate lunch, but seconds after her last bite she was running for the garbage. She proceeded to throw up all her lunch and again the seering pain. So bad again that she said she was gonna black out again. By then I'd had it.
I called Houston and they suggested a Cat Scan or MRI. So I called her local oncologist to also get his opinion and help me set it up and get authorization thru insurance, since anything the Burzynski Clinic orders is not covered. The clinic here was hoping to get me in for a stat cat scan, but could not get me in till the next day. That evening when Ryan got home we talked it over and agreed that an MRI would be better since CAT scans give out radiation and she is due for an MRI here in the next month anyways. So this morning I called again and tried to have the clinic setup a STAT MRI, but the fastest Kass could be seen would be next Tuesday!!! WHAT!!!! It's so hard to believe that STAT means waiting days in this town. Unbelievable! I even asked my friend who works at Steinberg for help and unfortunately one of her magnets was down and she too could not help. So off to the ER we went.
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| Our poor baby girl icing her head and getting fluids on Tuesday! |
Results on MRI showed no edema (swelling) or brain bleed, but again they could not tell us exactly if there was growth. But something in their report raised concern in Ryan and I because it said mild enhancement on c3 of her spine. I don't remember ever having tumor that low on her spine. Again, we've got the cd to overnight to Houston, this time made sure I had both brain and cervical on the cd, but unfortunately by the time we got home Fedex is now closed. So the clinic will not get the cd till Friday.
We really didn't get many answers tonight at the ER. Hoping in the next couple of days we do. On Monday we went to the endocrinologist to check on Kassidy's hormones, this week Kassidy's tumor was sent to Colorado for testing to see about the mutation of the V600e gene, on Saturday we finally get to do the sleep study. So hopefully all these tests soon give us something to go on.
This mom is completely exhausted and I don't know how much more stress we can take. Please, please, please, keep us in your thoughts and prayers.
Here are some pics of fun things Kass got to experience the since last update:
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| Kass at the Bowling Banquet Lettered for the 3rd year in a row. |
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| Team Captain Plaque |
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| Kass and I got to go to Cali to cheer on Centennial Softball! |
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| She felt so great there she even got to help coach warm up the girls. |
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