Ridiculous Insurance

Well, our Case Manager Cindy called me Thursday and told me that they have decided to not cover Tanner's chemo in Fort Worth either. They have deemed it "experimental" just as they have the chemotherapy that was performed in Arkansas all last year.

I wrote to the Department of Insurance appealing their decision and US Health and Life responded to them and said that they had made many exceptions in Tanner's case (one being assigning us a "Case Manager") and that even though their "experts" had decided that Tanner's chemo was experimental, they (US Health) had covered the chemotherapy treatments -- they just didn't cover the drugs used.

What?? What in the world did they cover?

I guess the insurance company decided since the DOI determined they couldn't help us with the chemo situation in Arkansas, they would go ahead and deny service in Fort Worth too (even though, from what we can determine, they have been covering these treatments for months now). I asked Cindy (the case manager) if this meant they aren't going to cover any of the maintenance chemo treatments he's been receiving since December and she said that was correct, they have deemed it all "experimental".

Also, they said they covered one stem cell transplant but when we go through all the EOB's, we can't find anywhere that a transplant was paid for.  Around the time that the first transplant was performed, there is a charge for around $43,000 and the insurance company only paid approximately $900 on those charges. If this is what they are talking about, I don't think that is anywhere near "covering one stem cell transplant'.

I called our case manager on Friday morning asking her to please call me back and tell me when and what they paid on the transplant. She hasn't responded yet.

When I received the call informing me that they have decided not to cover the maintenance chemo either, I just broke down at work. Afterwards, I called my mother-in-law and she told me that getting upset didn't help, but sometimes I just have to cry.

I cry, get it out of my system, and then move on and function again - but occasionally I just have to to let the tears come for a while. I've found that while I'm dealing with Tanner's illness and all that that entails, I have so much less patience for all the other areas of my life. I am so easily upset and end up with bruised feelings.

Sometimes I just have to hurt.

Tomorrow, I'll move on and deal with everything and we'll get it all sorted out.

"When you're dreaming with a broken heart

Then waking up is the hardest part

You roll outta bed and down on your knees

And for a moment you can hardly breathe"                             

New Doctor

Tanner drove himself to the chemo appointment today (he is making himself a necklace in this picture here from last week's appt.). I guess if all goes well, I will start letting him drive himself to the "fast track" appointments and I will only go with him once a month to the "doctor" appointment.

Last week was the appointment where we actually saw a doctor and when we got there, we found out Dr. Davis had "resigned". It was all very sudden with no warning at all and the vibe about his "resignation" wasn't very positive at all. I'm not sure what exactly happened but Tanner was assigned a new doctor that we both really liked.

Her name is Dr. Allbritten and she works a lot with young adults in Tanner's age range. She is very active in getting teenagers with cancer across the Metroplex together in support groups. She explained to Tanner that while most practices in the area don't have a whole lot of teenagers his age, if you combine their access to each other from practices across the Metroplex, then the group gets quite large. She said they recently got together and had an "Iron Chef" type cook off and that when his leg heals, they have adventure excursions that they take (like kayaking). Tanner was very open to the idea.

He has been spending a lot of time with his friends lately but he and I had some quality one on one time with each other this weekend. Saturday we went to On the Border (of course) for lunch, stopped and bought him some new tennis shoes (so that he doesn't always have to wear houseshoes), and then went to the movies to see The Sorcerer's Apprentice.

It gave us an opportunity to talk about his future. I told him that I understood that he wanted to "chill" for a while after all of his treatment this last year and finishing high school, but that he's been in remission since December and I think it's time for him to find something productive to do with his time.

He said that he agreed and has found that he's getting tired of "just hanging out". Dr. Allbritten said there are all kinds of scholorships for children who have had cancer so we are going to have her gather some information for Tanner. He's going to go this week and take his placement test so he will be ready to start school as soon as we find out when/if he is going to have surgery on his leg or not.

He has been having problems with a lot of nausea lately and he said his bones ache. I asked Dr. Allbritten if the aching could have something to do with the Zometa (the bone strengthener) that he is taking now and she said that could very well be the case. I need to do some research and see what I can find on the side effects of this medicine and how long they usually last.

The Social Workers at Cook Children's Hospital have applied for Tanner to see if he qualifies for any assistance and we have an appointment with the Social Security office on Wednesday. It will be interesting to see how that meeting goes.

I don't know how much longer he will have Cobra since he's been on the policy for over a year now. Hopefully, he will qualify for Medicaid which would be very helpful with all of these very expensive medicines he has to take.

We discussed his applying at some of the establishments where he could possibly get a job using his wheelchair but I told him he might as well wait until we go back to Arkansas at the end of September to see about his leg before he starts to seriously look for employment.

It seems that a lot is in limbo at this point until we see if surgery is going to be necessary.

A Lullabye

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn Around and you're two

Turn around and you're four

Turn around and you're a young babe going out the door

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn around and you're six

Turn around and you're eight

Turn around and you're a young lad

going out of the gate

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn around and you're young

Turn around and you're grown

Turn around and you're a young man

With a life of your own

On his own

Well, I let Tanner go to his chemo appointment today without me. He asked if he could just go by himself and I told him that I worry about him driving after they give him all of the medications.

At first, when they would give him the massive dose of the nausea medicine through his IV, he would get really loopy for a while. The last few times I haven't noticed any side effects from the medications but I told him I would still feel better if we waited and asked the doctor what he thought about Tanner driving himself. We finally came to a compromise, and one of his friends went to the appointment with him this morning.

We actually see Dr. Davis next week (we only see him once a month now days) and I will for sure go with him so we can ask the doctor what he thinks about Tanner driving himself to the chemo appointments every week.

You know how moms are, or at least how I am, I just want to hear that it's officially okay with the doctor.

I've been emailing with a lady from the insurance company this morning trying to determine how much out of pocket we will be responsible for if Tanner has surgery on his leg later this year.

It seems that since UAMS is "out of network" there is a $10,000 deductible and a 50% co-payment with NO out of pocket maximum (meaning we would have to pay 50% of all charges). If he has surgery in Fort Worth, there would be a deductible of $5000 with 80% coverage and $5000 additional maximum out of pocket that would have to be met.

Since we've already been billed well over $10,000 for charges this year, I'm sure we've met his deductible and co-payment maximum for this year so I'm really going to do my best to persuade Dr. Barlogie and Dr. Nicholas that we have no choice except to have the surgery performed here in Texas. Unless, of course, we hear the miraculous news that his bone is healing and surgery won't be required.

I'm not counting on that since we've already gone a year and there's been very little healing to date, so I'm just trying to prepare myself for what is surely coming.

If surgery is going to be necessary, then we need to get it scheduled because I know Cobra coverage is limited and he's already been on the policy for over a year.

Tanner just wants to be treated like everyone else. He doesn't want to talk, read, or hear about multiple myeloma. We were talking this weekend about the possibility of surgery and he told me he thought his leg was fine; that the CAT scan picture was "too good" and that he should have just had the x-rays done and not a CAT Scan.

I explained to him that the reason Dr. Nicholas had the scan done was because he needed to see an accurate picture of how the bone looks and you could clearly see the break all the way through the tibia. The discussion moved on to insurance and deductibles and bill collectors and he ended up in tears and told me his stomach hurt.

No teenager should have to deal with all of this.

You know, you have these children and you love them to the depth of your soul. You raise them to the best of your ability and they touch your heart with this unimaginable love - and they sometimes break your heart with this unimaginable pain - but no matter what, you just want to take care of them. You just want them to be happy and healthy.

You never imagine that cancer will touch their lives. You often think about how grateful you are that your children are healthy and then one day, in an instant, it all changes.

I go to work each day, I go out with my friends, I play with my grandchildren - but never ever is "cancer" far from my mind.

Healthy and Happy

We made some friends while we were in Arkansas by the name of Tom and Shirley Casey.

They rented an apartment across the street from ours and Tom would look out for us while Tanner and Shirley went through their treatment.

We have remained in contact and Shirley emailed me the other day and was telling me how sorry she was to read about our insurance difficulties and about the death of our friend John.

I wrote her back that I sometimes worry that my postings are depressing since I usually write about all the negative things that are happening in mine and Tanner’s life but that I seem to use the blog as a place to vent.

Sometimes, I get so caught up in trying to carry the burdens caused by the cancer that I don’t stop and post about the positive things that are happening in our lives.

I purchased myself a new little Honda and have given Tanner my Lancer for graduation. He’s quite excited and is working to make it “his own”. He and a friend have been putting tint on the windows and have installed a new stereo.

Buying a car was a BIG decision with all the financial difficulties we have right now, but I decided what else could I do? My Lancer is eight years old and we have to make all of these trips to Arkansas. I need something I can depend on. Heaven forbid Tanner and I should break down on that stretch of highway where there are miles and miles of nothing.

Then there's the fact that Tanner is 18 and needs some independence. If he's going to go to school and, hopefully, one day get a job, he's going to need a vehicle. In the end, I felt like getting another car was something I HAD to do.

He came to my office with me yesterday and worked for several hours placing labels on our client newsletters. In payment (part payment – part graduation gift), my employer had a new windshield installed in the car since the old one had a crack that was fast approaching the driver’s side line of vision.

He went camping over the Fourth of July weekend and has been going swimming quite often with friends. He’s working to exercise and is putting some weight (no more than 50%) on his broken leg. He tells me it’s not painful unless he tries to put his full body weight on the leg.

The nurses tell us that actually using the limb and putting some weight on it will, hopefully, stimulate the bone to start healing at a quicker rate.

We are getting everything together so that he can go in the near future and take his placement test at Tarrant County College. We are going to wait and see if the doctors decide if he has to have surgery before he actually signs up for classes but are going to go ahead and try to get everything in place so that once he’s ready, he can start some college courses.

His older brother, Trevor, found a job and has been working steady 11-12 hour days for the last week. He and Tanner spend lots of time together and my house is usually full of young people (I actually stayed at my cousin’s house while they were out of town last night so that I could have a little quiet time to myself).

Tanner texted earlier that he’s cleaning house today so, hopefully, they didn’t have too much fun while their mom was gone last night. LOL!

Yes, I often let the worry about Tanner’s disease and how we are going to come up with the money to pay all of these bills overwhelm me, but for the most part, things are going well for me and my boys.

I’m thankful to the depths of my soul that Tanner remains in remission and truly feel (as I tell Tanner all the time) that everything will work out. The most important thing is that he is healthy and happy.

So, just realize that I might "vent" here about all my worries, but as long as Tanner is in remission and we can continue to come up with ways to keep purchasing the medicines needed to keep him there, everything is good...

Fix

Dr. Nicholas says he doesn't know why, but Tanner's broken leg still doesn't seem to be healing. It's been over a year, and in his words Tanner is "a kid" and "should be healing" but he isn't.

They are going to give him until September when we go back to see Dr. Barlogie and are going to do another CAT Scan. If he isn't healing by then, they want to do surgery to put a nail in his bone.

Dr. Barlogie thinks this has to be done in Arkansas by an Oncologist Orthopedic Surgeon (such as Dr. Nicholas) who is familiar with Multiple Myeloma to assure Tanner the best possible outcome. In his words, if an inexperienced physician performs the surgery, then Tanner could end up crippled for life.

On the other hand, Tanner's insurance has dropped UAMS from their in-network facilities and we are now faced with a $10,000 deductible and 50% co-pay.

What does a parent do? On the one hand, the people in Arkansas are telling me to not worry about the money, but on the other hand I am receiving collection letters every day - and now the collectors are calling Tanner on his cell phone (since he has turned 18 years 0ld).

Do you know what it's like to be a mother who can't fix what's wrong with her child?

The people in Dr. B's office have told me not to worry about the money, but it's just reality and I do worry about it. I worry constantly. Tonight I had a complete break down on Kirk (thanks for always being there for me).

I would give anything to be able to just "fix" my children but I can't and sometimes it hurts almost more than I can bear.

A loss

I've had a nice 4th of July.

The boys have gone camping and informed me that they just wanted to spend some time together. Since I like to be alone, that was okay. I just reminded Trevor to watch out for his younger brother, remember that he's 18 and not 21, and that his bones are fragile. They have checked in several times a day to tell me that it is "all good" and as long as I hear from them throughout each day, I am ok.

I went to my friend Donna's house today and spent time with her, her daughter Hillary, and her husband Paul. It was a wonderful day and Paul grilled some delicious hamburgers.

I came home and Kelsey brought Beckett over to play with his MawMaw and we went out for some soup at Mexican Inn.

Now everyone has left and I am alone and I thought I would check my emails. Finally, finally I saw that I had received an email from John and Lauren, our friends that we made while we were in Little Rock.

I have called John's phone several times since we have seen them last and left messages and finally emailed them about a month ago that I was getting worried because I hadn't heard back from anyone.

Now, when I saw their name in my inbox, my heart skipped a beat because by this time I was afraid of what it might say.

It seems my fears were grounded because the news is that John passed away in March after spending five weeks in Intensive Care at UAMS. I guess he went into ICU right after Tanner and I saw him last and Lauren says that he was diagnosed with fungal pneumonia and ecoli sepsis.

Lauren is hearbroken and says she couldn't bring herself to tell Tanner and I what happened. I am so sad. I am in tears.

Do you know what it's like to meet someone that you just almost instantly bond with? I don't experience that often. My personality is rather withdrawn and introspective and I don't make friends easily.

While in Arkansas during those six months of intensive treatment with Tanner, we made just a few really good friends and John and Lauren were in that small group. Tanner and John seemed to be going through treatment at about the same rate so we spent a lot of time together while they went through their chemotherapy treatments.

John would tease Tanner for being a show off and rushing through his recovery quicker than the old people. Tanner would get such a kick when John would see him and call him a "little shit". We loved John and Lauren and this news has hit me harder than I could imagine.

How could you hurt so much when you find out someone you've known less than a year has died? Is it because we were all on this journey together?

I am so grateful that we got a chance to know John and Lauren. That we had a chance to meet their children and John's sisters. I'm so glad that Tanner and John had an opportunity to talk about their illness and that Lauren and I had a chance to talk about being a caretaker and the joys and fears that involves.

I am so grateful that one of the last times we were all together in Little Rock we had a chance to go out to eat, and laugh, and just be together outside of the hospital. For me to make an immediate friend like that; one whom I feel completely comfortable with, is so rare. We are so blessed that they were part of our journey.

I loved John and I love Lauren and i don't know how I'm going to tell Tanner that John is gone.

I'll post soon about what Dr. Nicholas had to say about Tanner's leg but right now I'm just dealing with the loss of a friend.