What a day. I didn't go with Diane and Cody because I was assured that the procedure he had was low risk. That didn't keep me from worrying. It turns out the procedure went pretty well. Diane said that Cody was a trooper all day. Although we haven't received any results from the recent tests, the news we did receive was not the best. First off, the meds that the doctor prescribed to Cody the other day was so awful tasting that Cody was gagging. So today the doctor prescribed him fluconazole which fungicide in pill form. So we get word from the pharmacy that my insurance will not pay for this drug because it is so expensive and they want to review the case to see if it is really necessary. They expect to review the case within 24 hours. In the mean time this potential fungus will keep growing. This is just one of many issues that add to the stress of having a sick child. There are other insurance issues but I won't get into that right now.
Being a member of BOP I have been hearing of shortage issues with the 3f8 antibodies. Well we find out today that the do not have enough antibodies for Cody to start. The doctor from MSK wants to keep Cody on the low dose chemo until they have more available. This is all starting to build up on me again. It's not enough that he has to battle this awful disease but now he has to wait for a drug to be approved by some bean counter and to have more of another critical drug to become available. If God is testing me why can't I be the one who is sick? My son shouldn't be going through this...
To top the day off, I came home to run this evening. I've been doing 5 mile runs every other day and it has been getting easier for me. Today it is nice and cool with low humidity. I start out running and my legs felt very sluggish. This really doesn't make much sense because it's usually very hot and humid days when this happens. On top of the legs I just couldn't get my breathing under control. I couldn't seem to get enough air in my lungs. I'm disappointed to say that I did 3 and called it quits.
Update: medication denied so I have to take him in for an IV med. He would have to take about 5 other drugs and they would have to fail before they will approve another. Meanwhile the infection just keeps growing. Real nice, don't you think?
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17 comments:
I'm so so sorry. Wish I could do something to get things moving for Cody. I hope you get some good news tomorrow.
Hope the insurance idiots get their acts together for you....spoken by another health professional...
You running is great no matter the miles. Stress makes our muscles balk and lungs hesitate. Your mind was speaking through your body.
MANY positive thoughts and prayers to Cody and you four. Never forget that "squeaky wheels" do get heard--it's ok to demand and ask for care. You two are great at that!!
G2G
I'm sorry for all the crap lately. . . . this sucks!
I think the run sucked cause everything else did & you're body knew better thatn your mind that you just need a break....
Hopefully the results will get back quicker that the ins appoval to find that he didn't need it anyway
I cannot believe that with all the stuff and medication that he has been on, that anybody would have to review anything. It ticks me off when bean counters have veto power over Doctor's orders.
don't worry about the run. We all have good days and bad days and you just had a bad day all around.
I hope and pray that today is better with better news
Praying for you and Diane and Cody! Sorry to hear about he run! I know how that can be. I've had that when swimming. I usually try to focus on something other than the swim, in your case the run. For me it is usually Cody. Then I think if he can do all that he is doing I can do this.
Susan and Jonathan
Oh, Micki my heart is just breaking for all of you! I can't imagine. This insurance co. thing just makes me furious!
I hope, hope, hope, the IV will work for Cody.
Don't worry about the run. We all have days like that. The next one will be better.
Hold on!!!
Lilly from RW
None of this ever make sense dose it? But, know this Mickey, Cody and the rest of you are always in our prayers and thoughts. I have a picture of Cody on my computer at work, so that you all are never out of my thoughts.
Love you - Pam
That is the dumbest thing I ever heard. Diflucan is not a weird, outlandish, cutting edge drug. So what if it is not on the formulary. If the Dr said it is medically necessary for Cody then, It is necessary and he should get it without then BS.
I guess you can tell that this hits a nerve.
OK, done ranting for now. I'll calm down and them pray fro you him and all involved.
Gosh Mickey, sorry to hear of the hassles - the only thing you should have to worry about is getting Cody the care and medicine he needs.
As for the run, no worries, some days it just doesn't happen. I'm sure you'll have a good run next time out.
Diane, hope you're holding up okay...
Hugs to all,
ELizabeth
Mick: Can you appeal the denial? I swear, sometimes if you stick it to 'em a bit, they'll relent. You start off being nice, then say..."Hey, you know, the Washington Post published a photo of my son made hairless by chemo hugging santa. How about a follow-up story about some beancounter at an insurance company who is piling on by being a chisiling SOB?"
Go get em Mick.
monica
Deep breaths!!
Hugs to Cody, Pat (ACCA-NCC)
We have been down the same road plenty of times. There is a way around this that involves the doctor's and Mary at Geargetown. It totally sucks and who gives the insurance company the right to reject doctor orders. It's frustrating as HELL and for the life of me I cannot understand it. Please call us tomorrow so we can share our tricks. The insurnace company wont tell you but we certainly will.
Kiss and hug the family for us and keep your head up. It's hard but rest asure your family is uplifted in prayer.
Eric
Hi Mickey,
OK, I'm MAD! So I can only imagine how you all are feeling. I say Appeal Appeal Appeal!
Put those social workers to work and see what they can do, in conjunction with the docs. I'll keep my fingers crossed and send my best social work vibes in your direction. Hopefully, whatever drugs Cody is getting now will do the trick.
Lots of hugs to you and Diane and the kids,
Wendy
Ack! How infuriating that an insurance company can deny meds for a sick child.
Prayers still coming for all of you- hope by nw the IV meds are helping.
Dottie
Mickey, I feel your pain so deeply. This is rediculous. Be strong and keep fighting the fight. I wish there was something I could do, but in the meantime I will continue to pray for Cody and the family.
Bruce
Mickey and Diane,
Alright now, gather all of the stength, hope and faith that you have left and press in even harder.
As you have already been advised by your friends, get the social workers moving, get those Doctors moving on an apppeal right away. It can be done and you both are the ones to do it. We are all backing you both in prayer.
Love, BigSis
Praying that the spot is just an infection & that the i.v. treatments clear it up. The insurance beancounters suck-I had similar experience with my wife when she was sick. If still need the drug, see what folks at Georgetown can do- sometimes they can work with drug company to get free "samples" or try appealing directly to the drug manufacturer for free or reduced cost-Hang in there.
Jim-ACCA
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