Sunday, January 31, 2010

It has been a fairly quiet weekend.

The good news is I found out that I qualify for financial aid from the Chronic Disease Foundation for Tanner's Revlimid prescription.

This was great news because I truly didn't know how I was going to come up with a 30% co-pay for a $9000 prescription every 25 days.

The lady from the financial office at the pharmacy told me to try and not stress too much and that she would get as much aid as she could for us from this foundation and when that runs out, she will help us look elsewhere.

I told Tanner the other day that we just have to trust that things would work out and it looks like, at least for now, that they have. I have to admit, when she told me I qualified for aid I was doing a "happy dance" at work.

Tanner has the Honda running and inspected and I've let him drive some this weekend so, needless to say, he's in teenage heaven right now. It's the first time he's driven since June and he's quite excited to get some of his freedom back.

It was a hard thing for me to do to let him get in that car and drive away but the doctors in Arkansas told me to let him drive at least some since it's his left leg that's in the cast. Of course, he tells me now he can drive himself to his doctor appointments but I told him we would have to see about that.

They will start the velcade injection this week and it can cause him some nausea so I will have to see how he feels. He will only have to take it once a week (when before he was taking it four days in a row) so I'm hoping it won't make him too sick.

I left this morning at 6:00 a.m. to go out and see Trevor and it's been a very long day. I think it's time to call it a night. Tanner goes to work with me in the morning and then we will go to Dr. Davis' office in the morning and get his maintenance program started.

I will be sure to update on how things are going.

Thursday, January 28, 2010

I'm sitting in bed listening to the rain. I love Texas thunderstorms - especially if I'm at home cuddled up under a blanket!

Of course, I have wires running across the room and into bed with me since I can't keep the wireless connection but at least I have the laptop working at the house now. LOL!

I've been fairly sick the last couple of days with a sore throat, coughing, aches, and congestion. I would worry about passing it on to Tanner but I think he's the one who actually gave it to me since he's been coughing for over a week now. He just brought me in a bottle of Thera Flu and made me take a drink. I guess he's taking care of me now!

I've had several phone calls with the pharmacy regarding Tanner's Revlimid prescription. They are trying to get everything sorted out so that he can start his maintenance program but it seems like there's a lot to go through before you can get this prescription.

They had to get pre-authorization from Dr. Barlogie's office and now it has to go through clinical review at the insurance company. Of course, just going by the insurance company's record on what they've covered for Tanner during his treatment, I have no idea what they will decide. Then they will have to call Tanner and do a phone interview before they can dispense the drugs. It's just a much longer process than I anticipated.

Our case manager for the insurance called me today and was very nice and is trying to help us out as much as she can.

Come to find out this Revlimid prescription alone is over $9000 for a 25 day supply and our co-pay on these specialty medications is 30%. Needless to say, I don't know how I'm going to do this - but I'm trying not to stress and panic.

I'm going to email my phone nurse at Dr Barlogie's office tomorrow and see if they have any idea how long they "think" Tanner will be on this medication. It would be nice if I had some general idea of what we are looking at.

The case manager said that there are foundations that can assist with medication co-pays and she's requested that someone call to take my information and see if we will qualify.

I was talking to Tanner's grandmother about it this afternoon on the phone at work and I turned around and he had come in to my office in his wheelchair and heard me talking to Jane about the costs - and he was crying.

I just put my arms around him and told him not to worry that I was sure we could get some help from one of these foundations and that I didn't mean for him to hear what we were talking about. I hate for him to worry about the financial aspect of all of this. He has enough to endure.

He spent Tuesday night with Granny Jane and Pop Jerry and when he got to my office Wednesday afternoon, he found that Bruce and Alicia had decorated in celebration of his reaching full remission. They bought him lots of snacks to help him keep his energy up as he's trying to finish his last two school packets.

He is halfway through English and then will only have Algebra left before he will officially be a high school graduate!

I find it truly remarkable that on top of everything else he's been through the last seven months, he's managing to graduate in his "official" senior year - ahead of schedule!!

I am so very proud of him. He's one of the strongest people I've every met!!

Yea Tanner!

Tuesday, January 26, 2010

Why is it that most of my memories from chidhood are so dark? Of parents fighting? Of yelling and cursing? I know that we had good times, but it's the dark times that seem to stick in my mind.

I often wonder what childhood memories my boys will have when they reach my age.

My parents were good parents. Don't get me wrong. I don't have a doubt in my mind that they loved their kids. They loved us with all their hearts and took the best care of us that they knew how.

I was fifteen when true despair first touched our lives. That's when my oldest brother was killed at the age of twenty and my parents just never recovered.

It seems like since then it's been one tragedy after another. I know that there's been a lot of joy, but I have to be honest, life has sometimes (often) just been hard.

This blog has been a lifesaver for me the last seven months, but I still struggle about how honest to be. What will people think? How much do I reveal?

It's hard sometimes to struggle with depression. Am I depressed? Is it normal to go from being happy to feeling the darkest, deepest despair all in one day? To go from laughter to tears in the span of 24 hours? I've done that today. I've done that often.

When you are young, you never consider that these children that you have will one day struggle with their demons or, heaven forbid, be diagnosed with cancer. Then life just throws all these "things" at you and you just have to "deal".

That's what I'm doing right now. I'm "dealing". I know that there are a lot of parents who have had to deal with a lot worse things than I've had to contend with and I realize that I really have a lot to be happy about, but sometimes it's just hard. Sometimes, I just become overwhelmed.

I'm dealing with the "low" of the fact that my baby has cancer. I'm dealing with the "high" of the fact that's he's obtained remission. I'm dealing with the "unknown" of what tomorrow might bring.

Today I've felt true happiness and laughter - and have cried tears of exhaustion and uncertainty - and that's what many of my days consist of; going from one extreme to another.

I'm not asking for sympathy or advice. I'm just honestly expressing myself at this moment. I know that tomorrow will be another day and things will go on - and I will be fine. I've been told to just enjoy the fact that Tanner has reached remission, and I honestly do, but I also worry and I just feel like being honest about that tonight.

Tanner told me that he was tired of being the "center of attention". I think that both of us are just wanting life to return to "normal" and have to adjust to the fact that things will be different from now on. Our lives have changed.

I'm working with the drug company to get the insurance to help cover Tanner's maintenance medications and, hopefully, we can get that all straightened out this week.

The insurance company keeps denying medications and saying that the insurance has been terminated. EVERY time I try to get a medication filled, it takes hours to get the insurance company to realize that Tanner has coverage and I'm getting really frustrated.

I was on the phone with the Revlamid people tonight at 8:00 p.m. and we are working to get the insurance to help cover the needed medications and I'm tired of having to go through this every time Tanner needs a prescription filled.

We need to get him started on his maintenance program, and this insurance situation just wears me out. As I've been told over and over, I need to look on the bright side. I need to see the glass half full.

Hang in there with me. It will be all good tomorrow.

Sunday, January 24, 2010

I finally got the laptop hooked back up at the house so I wanted to post an update. It will have to be quick because I'm going to lunch and the movies with a friend but i thought there might be people checking to see what the news was when we saw Dr. B on Friday.

He said Tanner is in FULL REMISSION and is going to live a long life and will have to work; no excuses allowed!! I cried and Tanner and I both got long hugs (with lots of kisses on Tanner's bald head) from Dr. Barlogie.

When we got out to the lobby, the nurses and reception ladies (that were still there at 6:00 p.m.) all wanted to know what was wrong and I told them Dr. Barlogie said Tanner was going to live a long life!

After that we were all crying and hugging! Then Tanner and I got in the car and headed back to Fort Worth and arrived at home around midnight. Since then, I've barely seen him because he's had so many friends over. I guess he's making up for all the time he's been away with his mom and is just sharing the joy with his friends. I would say that's a good thing for a 17 year old boy to do!

I will update with more details about his treatment a little later but just wanted to be sure and share the good news at this point!!!

Thursday, January 21, 2010

We went to Aunt Tincey's house this evening for a home cooked meal and it's the best Tanner has eaten since we've gotten to Arkansas.

For the last couple of days he hasn't been able to eat more than a few bites at each meal. Tonight at our aunt's house he ate most of everthing on his plate.

He did really well through his bone marrow biopsy (where they broke off a piece of his bone), aspiration, and gene array. They had to take three draws and he just kept doing his breathing exercises throughout the whole thing. The lady who performed the procedure did a really good job and it was over before we knew it.

I know Tanner hates the bone marrow procedures (and I hate watching) so I'm glad it's over and hopefully he won't have to go through it again for another three months.

We left the hospital around 11:00 a.m. and he said he wasn't hungry so we just came back to the hotel. I layed down on the bed for what I thought was going to be just a few minutes and the next thing I knew I was waking up and 2-1/2 hours had gone by. We ended up not eating anything today until we went to Aunt Tincey's house so the meal was very much appreciated.

We are both anxious to hear what the doctors have to say tomorrow. We go for x-rays at 9:00 a.m., then to see Dr. Nicholas to 10:00 a.m., then to have the cast changed, and then finally to see Dr. B at 2:00. It will most likely be a late drive back home, especially since you usually have to wait 1-2 hours to see Dr. Barlogie.

I think I'm going to go ahead and wrap this up tonight so I can get thing organized so we can check out first thing in the morning. Tanner is looking really tired so we are going to try and turn in early.

Wednesday, January 20, 2010

A long day ending with friends

Well, it's been quite a long day.

Tanner and I didn't get a whole lot of sleep last night. We weren't able to get our room at The Guesthouse and ended up at the LaQuinta right off the highway and it was a pretty rough night.

They put us in a room on the end and the room right next to us has paramedics in it. I guess they "office" out of the hotel room and you could hear their radio going off during the night, then their door would slam and the ambulance would take off - over and over all through the night.

Tonight we are both taking sleeping pills! Hopefully, we will both get a better night's sleep!!

It has been a full day of tests starting with us going to MIRT around 11:00 a.m. this morning to pick up our packet and have labwork. Then we went for Tanner's MRI which took nearly three hours and ended with the PET scan this evening. Tanner didn't get to eat until nearly 7:00 p.m. tonight (which means I didn't either).

He felt like he was starving but for some reason hasn't been able to eat much the last couple of days. He takes a couple of bites and then feels nauseated and can't eat anymore. He said he wasn't going to tell Dr. Barlogie, though, because he's afraid he will make him stay longer. LOL!

We went to dinner this evening with John and Lauren and had some really good mexican food. We have all been talking about going out to eat for six months now and it's taken this long to find a time when Tanner and John both feel good at the same time. It was worth the wait and Tanner and I had a great time!!

He has an appointment at 8:30 a.m. for a bone marrow aspiration, biopsy, and gene array - which means he will have to go through the procedure two times in a row. It's hard for me to watch so I can only imagine how hard it must be for Tannr to endure!

It's going to be an early morning tomorrow (after a long day today) so we are going to bed early tonight. Tanner is already ensconsed on his bed and we can hear a storm rolling in so I'm going to brush my teeth and call it a night.

Tuesday, January 19, 2010

I'm going to keep it fairly short and simple tonight because I'm pretty exhausted.

We left for Arkansas at 6:00 a.m. this morning and when we arrived, went straight to the hospital so they could replace his cast with a regular full leg cast. This was done in order to take out the metal in the hinge so that he can have a PET Scan tomorrow.

The last two times they changed his cast, he was in a considerable amount of pain but today he said it felt much better and didn't hurt at all. The man who changed the cast said that he could feel the calcium build up around the break. This is good news because the last time they x-rayed the break, it hadn't healed at all.
When we left the hospital, we discovered that they didn't bend the knee enough and he could barely fit in my car, even with the seat pushed all the way back. He was pretty uncomfortable just driving ten minutes across town. We will definitely have to have it changed before we leave on Friday.

Tomorrow mid-morning we will go over to MIRT to pick up our packet, have labwork, an MRI, and then we will go back at 5:00 p.m. for the PET Scan. It might be a long day for Tanner because he can't have anything but water for six hours before the PET.

When we finally arrived at our hotel today (for which I had made reservations last week), we were told that because many patients weren't able to go home as planned, they didn't have our room available. They sent us over to LaQuinta so now instead of being in a room with a small kitchen, we are in a regular room.

Oh well, if there's one thing I've learned over the last several months, sometimes you just have to go with the flow.

Sunday, January 17, 2010

The weekend has come and gone and now we are getting ready for Arkansas again. They will take the cast off on Tuesday afternoon and then the tests will start Wednesday and we'll see Dr. Nicholas and Dr. Barlogie on Friday.

I keep telling myself that it's just a few days of tests this time but then there's that little worry in the back of my mind. What if???

I'm sure it will be all good though and Tanner will be placed on a maintenance program.

I received a message from John (our friend that we met in Little Rock who had a reaction to one of his drugs) and he sounded so good and strong!! He said he's much better and has "turned the corner". I'm so very glad! Tanner and I have been so worried about him. He was so weak and skinny when we last saw him. He is still in Little Rock so I need to be sure and call him back and let him know when when we will be there. We are staying at The Guesthouse and I think it's very near the place where he and Lauren stay. We want to be sure and see him while we are in town.

I also received a message from Tom and Shirley and they are still at home in Oklahoma so I don't guess that we will get to see them this trip. They said that someone broke into one of their shops while they were in AR and stole one of their ATV's. It's just so disheartening that people take an opportunity to use your absence while you are undergoing treatment out of town to steal from you.

By this time, Harris should be on a maintenance program and he and Anastasia should be back at home in Greece. Tanner and Harris started their treatment at the same time and they are both moving on to the maintenance phase around the same time. I'm so glad that they have finally gotten a chance to go home since they've been in Little Rock since August.

We went to see Trevor and you could tell that they were so glad to see each other. Trevor worries about Tanner all the time and kept rubbing and kissing his bald head. It was a great visit and I know that it makes both boys feel better to have an opportunity to visit with each other. It helps Trevor just to be able to look at Tanner and see for himself that he's doing well.

Tanner is spending the night with his dad and Janet tonight so it's quiet here around the house. I'm trying to get clothes washed and everything ready so that we can head out bright and early Tuesday morning. Tomorrow will be a busy day at work while I make sure everything gets caught up before I head off.

My cousin will be staying at the house this time, so at least I have a little peace of mind on this trip. Though, like I said before, most anything of value has already been taken so I guess it's all good. LOL!

Friday, January 15, 2010

I've been awake since 4:30 a.m. listening to the rain. My mind was restless last night so I took half a sleeping pill and it knocked me out for about six hours and now, here I am at 4:30 in the morning on the computer.

I started to just get ready and go on into work but Tanner is going with me today to work on a school packet and he probably wouldn't be too interested in getting up this early in the morning.

I can already feel the tension building with just the thought of having to go back to Arkansas. I know this trip is just tests (which is bad enough since I know that Tanner is going to have to have to endure two bone marrow biopsies and aspirations in a row this time since they are performing another gene array), but deep down in the dark recesses of my soul is that little fear of "what if". What if something shows and they want to do more chemotherapy?

How long does this fear last? How long do you worry that these tests will show that the cancer is back? Tanner and I have talked about it, and our guess is that we will worry for the rest of his life.

He seems to do a better job than I do of putting that worry aside and just living life. Maybe it's his young age or maybe, like me, he just tries to bury those fears deep down and not let anyone else see that they exist.

We went to see Dr. Daniels, his Pediatrician, the other day and Tanner hadn't been to that office in a couple of years. Dr. Daniels wrote him a prescription for the Vitamin D and sat and talked with us quite a while about Tanner's illness and mentioned that some water physical therapy might be good for him since he could exercise his body without putting weight on his legs.

He also told us that he had just received some literature on a teen cancer support group and was going to look into it for us and would give us some contact information. I just feel that it would be good for Tanner to be able to meet and talk to some other young people who have dealt with some of the same things he has in the last six months.

I'm sure that he has thoughts, feelings, and fears inside that he doesn't talk to his family about and it might be good for him to meet some young people who would completely understand what he has been going through and who he can open up to and be completely honest. I think it's at least worth trying and seeing how it goes. Especially since once maintenance starts, Tanner's care will be done here in Fort Worth.

Tuesday, January 12, 2010

Tanner and I go in the morning to see his Primary Care Pediatrician. His Vitamin D level is low and the Orthopedic Surgeon in Little Rock wants him to take 50,000 units of Vitamin D twice a week for ten weeks hoping it will assist in the healing of his broken bone.

The Oncologist here in Fort Worth did the baseline test but doesn't seem to know how to prescribe the Vitamin D so I thought I would check and see if his Pediatrician would be able to prescribe some for Tanner. My niece, T.D. works for him so I sent her an email and she called to say that Dr. Daniels already had the prescription written and just needs Tanner to come by for a short office visit in the morning.

He came in to work with me for part of the day today and finished half of his Earth Science packet. If he finishes the other half of the packet tomorrow, he will have finished two packets by just coming to work with me a couple of days a week. At that rate, he should finish school before you know it!!

We head back to Little Rock next week and they will take off his cast on Tuesday and the tests will start on Wednesday. He will see Dr. B on Friday and, if all goes according to plan, they will set him up on his maintenance plan that can be performed here in Fort Worth.

Needless to say, the security system will be turned back on at the house and one of my cousins has agreed to stay here this time. Not that we have much more to lose at this point!!

Kayleigh had her second birthday party this past weekend and Tanner has gotten to see lots of his family and friends. I know he and I both are counting on everything to still look good when we go back to Arkansas and there be no need for anymore chemo - but then in the back of our minds there's still that little fear...

Thursday, January 7, 2010

Brrrr! It's cold!! Tanner is cuddled up in a blanket in the living room watching a movie on IFC. It's too cold to do too much tonight.

He has gone to my office with me the last couple of days to work on his school packets. My boss, Bruce, talked to him and made him see the importance of buckling down and getting his school finished. He has five packets to complete after which he should be able to graduate.

Bruce told him if he would come to the office with me at least three half days a week and focus on the packets, he should be able to graduate by the end of May (just like he would have done if he had been able to stay in regular school).

Tanner has really applied himself and finished his U.S. History packet in two days! Isn't that amazing? He finished a whole subject in just two days!! If he can keep up this rate, he should be able to graduate soon!

He was pretty tired by this evening and Bruce told him since he's worked so hard, he can have the day off tomorrow. LOL!

Healthwise he seems pretty stable right now. He has lost what little hair he did have and has a hard time handling these extremely low temperatures right now.

This morning when we were making our way through the parking garage, he threw a blanket over his head and told me he felt like he was "swimming through cold air".

I couldn't ask for Tanner to have a better attitude. He's just such a positive young man. Sometimes I still have rough days (like this past weekend) and Tanner ends up worrying about me when he's the one having to deal with this illness and all these treatments. He is so strong and I am so very proud of him.

Just think, in a matter of a few months, Tanner should be able to earn his high school diploma! Won't that be a proud day for him and his family?

Sunday, January 3, 2010

Well Christmas is over and I think Tanner has enjoyed all the time with family and friends.

He spent this weekend in Abilene visiting with his grandfather and I think is on the way home as we speak.

I received a call yesterday from the owner of the Burger Box in Kennedale who also has multiple myeloma. He said that one of the nurses in Little Rock was telling him about Tanner and how we live in the same town. He saw the story in the newspaper and asked me to give him a call and schedule a time so that we can get together and he can meet Tanner.

I told him that we have lived in Kennedale over twenty years and that I use to see him at the Burger Box all the time. He said he now just goes in occasionally but would like an opportunity to meet with Tanner.

He is on the maintenance program now and said the he sees a Dr. Dickey in Arlington who use to be an Associate of Dr. Barlogie's at M.D. Anderson. Tanner and I have discussed changing to an Oncologist who treats adults rather than pediatric patients once he goes on a maintenance program so I think I'm going to give this doctor a call after we get back from this next trip to Little Rock.

I've received several calls and cards from people who have read about Tanner and the break-in at the house. One of the coaches in Kennedale stopped by and talked to me earlier this week and says that he also would like to meet Tanner when he gets back in town.

A lady from Six Flags Over Texas in Arlington called me last week and asked if Tanner could come out and help them do the count down to New Years. When Tanner and I first talked about it, he was excited and ready to do it, but when he realized that the low that night was going to be in the twenties, he told me he didn't think he was quite ready to be out in that kind of weather.

She told me to keep her number and give her a call next season and they will treat Tanner and some of his friends to a day at the park.

The kindness of strangers continually surprises me.