Monday, November 30, 2009

After driving for hours through storms where you sometimes couldn’t even see the highway, we have made it back to Little Rock. I’m surprised it only took an extra hour to get here. I was going to update the blog after we settled into the apartment, but with all rain, the cable (and the internet) are down so I’m just going to type the blog in Word and will upload it tomorrow.

Our appointment with Dr. Barlogie is at 10:00 a.m. so, thankfully, we won’t have to get up too early. It was quite a stressful drive getting here.

I couldn’t ask for Tanner to have a better attitude. He seems ready to face treatment again and told me before we left “The faster we go the faster we can get back home”. He seemed to have a good break with plenty of time spent with his family and friends.

He told me not to pack his Latch and Hook Rug this time because any time that he has where he isn’t feeling sick he wants to spend on his school work. With the home school program, he knows that if he hadn’t gotten sick, he would probably have already graduated. I told him there’s quite a bit of difference working on a rug when he isn’t feeling quite normal and working on school work where he has to concentrate but we left the rug at home and I guess we’ll see if he can get his packets finished. It will be a day for celebration when he gets his High School diploma!

I personally found the trip home to be more stressful than I could have imagined.

Lauren (our friend whose husband John is also going through treatment) and I talked several times about how “simple” life is in Arkansas. Your life is so focused on treatment and going back and forth to clinic every day. It’s actually a very isolated life. She told me that she was nervous about going home and back to her “normal” life and after this trip I have to admit it was a hard thing to do.

What was “normal” before is no longer an option. I’ve found that I am sort of adrift; trying to function in my daily life but that person I was before isn’t there anymore. I’ve lost that sense of security.

As I’ve mentioned several times, I’m having difficulties sleeping and find that most nights I can’t rest more than a few hours unless I take some sort of medication.

This past weekend I went to the lakehouse with my cousins after our Thanksgiving dinner on Thursday. I had been so looking forward to it. Some of my best times have been spent with my family at the lake.

We had the most beautiful fall weather and, after a few margaritas, Kathy and I relaxed and laughed and had a great time Friday night. Then everyone went to bed and I came face to face with some of my darkest emotions and I had a breakdown on my cousin Kirk. I didn’t sleep at all that night and by the time dawn came around, I decided I couldn’t face the idea of having to interact with anyone. The thought of having to talk and function was just more than I could bear so I told Kirk that I had to go home and he said he would explain to the family and I left while everyone else were still asleep.

I know that was a horrible thing to do. They were there for me and I just left without a word and I owe them the biggest apology. Kathy called me while I was driving back to Fort Worth and wanted me to turn around but I persuaded her that I just needed to go home and get some rest so that I would be ready to drive back today. She seemed to understand and I hope she did because they all mean the world to me and I don’t know what I would have done without them for the last several years.

In these last months I’ve had to deal with more emotions and fears than I’ve ever had to handle my whole life and I’ve come to a point where I realize that I need some help.

When I was 15 my oldest brother was killed. When I was 25, my mother acquired sepsis blood poisoning and slipped into a coma and after several weeks watching her body slip away, we had to agree to take her off life support. A few years later my dad died of COPD and shortly afterwards my Memaw passed away. Then, after battling drugs, my youngest brother shot and killed himself. I’ve watched my oldest son deal with his addictions and mental torments. I’ve had my share of heart ache but in the last months, I’ve come to some of my darkest days and I keep thinking tomorrow will be better. Tomorrow keeps coming and I’m still struggling.

I know that everyone says I need to be positive, that I need to have faith - and I do. I do feel positive that things will be okay and my faith and hope are sustaining me but I have to admit that I also have bad days with fear and despair.

My mother’s assurance of her child’s health is gone - that feeling that a parent often gets when they see someone else whose child has endured much tragedy or sickness and think “Thank goodness my children have their health”. It’s that old adage that you never think it will happen to you or yours.

I’ve come to the conclusion that it’s time to ask for help. I’ve seen in some of the information given to us from MIRT that there is assistance available to patients and caregivers who might be facing some emotional problems and difficulties sleeping. I think it’s time to look into obtaining some of that help.

I apologize if this is more personal information than some people want to read about. I know this blog was started in an effort to keep family and friends updated on Tanner’s daily treatment and progress while we are here in Little Rock but I’ve found that I’ve turned to it more and more to “unload” some of my thoughts and fears.

I talked to Kirk while I was home about the fact that Tanner hasn’t read the blog since the first week we were in Arkansas (I read or print for him all of the comments) and he said maybe since he’s living it he doesn’t feel the need to read about it.

I am not a very outgoing person. Over the years when I have sought counseling I’ve found that I can’t seem to open up even after weeks and months of seeing someone but there’s something about just being able to sit down in front of the computer and write. I’ve found that I can put things here that I would never dream of talking about so please forgive me if this has turned into more of a blog about a mother who is dealing with her emotions and fears as her son is undergoing cancer treatment than just a log of his progress.

I do truly believe that Tanner is getting the best care available and that he is going to be okay and will have a long and healthy life. I’ve just come to the conclusion that it’s time I sought some assistance for myself as I help him travel this journey. There’s a “me” before diagnosis and a “me” after diagnosis. No one can walk this journey for me and I think it’s time I work on getting myself stronger so that when Tanner and I next come home (hopefully on maintenance by then) we can build a new “normal” life where I can be the person I need to be for myself and the mother that Tanner needs.

Thursday, November 26, 2009

Happy Thanksgiving everyone!

Tanner and I are going out to my cousin Kathy's today and then his dad and Janet are going to meet us this evening and he's going to spend the weekend with them before we head back to Arkansas. Tonight, I'm heading to Kathy & Bobby's lakehouse for the weekend and some relaxation (and margaritas) before we leave on Sunday!!!!

Tanner spent the night with his friend Zach but they assured me he would be home by 10:00 a.m. this morning. I just hope they don't oversleep. I know they probably played X-Box 360 all night!!

When we were in the reception area waiting on Tanner to go back and have his bone marrow biopsy and aspiration, we met this young man who looked like he was in his 30's. As usual, everyone started sharing their story and we discovered that this fellow was rated "low risk" for the MM to return (as is Tanner) but only stayed in remission for nine months and is now back in Little Rock and is about to go through treatment all over again. Sometime it's scary when you hear other people's stories...

The nurse that did Tanner's bone marrow was really good. She didn't take long at all and it was over fairly quickly. Tanner told her he appreciated what a good job she did. He had me video the procedure because he wanted me to post it on the blog but when I try to email it from my phone, I get a message that the file is too big. I will have to check with Bruce to see if he can instruct me in how to get it off the phone. Tanner just wants to share with you all what the bone marrow procedure is all about.

I think this biopsy was his sixth if you count the one where they put him to sleep at Cook Children's Hospital. He just deep breathes through the whole painful process now.

I think he's one of the bravest people I have ever met.

Tuesday, November 24, 2009

We made it to Little Rock around 6:45 p.m. last night and stopped to pick up some roasted chicken and green beans for supper. Tanner had to have a "healthy" meal last night since he had a PET scan scheduled this morning. Thank goodness KFC now has roasted chicken!

I took 1/3 of a sleeping pill last night around 9:00 p.m. with the thought that I needed a good night's sleep since we had to be at the hospital by 6:30 a.m. this morning - and then drive back to Fort Worth after testing is complete. Unfortunately, I was wide awake at 3:40 a.m.

The first test of the day was the MRI and when Tanner came back out to the waiting room, I was napping on his jacket in a chair. He and the technician were laughing at me! Maybe that little nap will help me get through the drive back to Fort Worth!

He's in the back now having his PET scan after which we go over to MIRT and pick up his packet and have labwork. Then he will have his bone marrow biopsy and aspiration at 1:30p.m. and then I guess we will grab something for lunch and will make the drive back home.

Shirley (our neighbor at the apartments in Little Rock) who is also going through her treatment for MM, called me yesterday while we were driving up and said she wanted me to know that she and Tom will be coming back Sunday for her next consolidation chemo. That is great news for Tanner and I because we are coming back on Sunday also and this way we won't feel all alone these first few weeks of December. It took her 21 days to recover from her last round of chemo so she's a little worried that they might still be here Christmas. I hope she and Tanner both "breeze" through this chemo treatment and everyone can be home with family and friends in time for Christmas.

The first 2-1/2 hours of the trip up here yesterday seemed to fly by, but the last half of the trip seemed to last forever. Maybe it's because it gets dark so early now. As least when we drive home this evening, we should be in familiar territory before it gets too dark.

One of my agents teased me yesterday that my car probably knows the way now and I could just nap. Woulnd't that be nice! Believe me, the next car I purchase will definitely have cruise control!

Sunday, November 22, 2009

Our cousin, Kirk, came over and cooked spaghetti for Tanner Friday night and Tanner has eaten the leftovers twice since then! I woke up Friday morning at 3:00 a.m. to the sound of rain and never fell back asleep and by the time I got back in bed, I had been up for 22 hours straight.

I figured I would sleep late Saturday, but I was up by 9:00 a.m. so I went on in to work for several hours to get some of my stuff caught up before the Thanksgiving holidays arrive - and we head back to Arkansas for Tanner's next round of treatment. Then Saturday afternoon, we went to my grandson Beckett's first birthday party. This morning we left at 6:00 a.m. and went to see Trevor and tonight we are having Thanksgiving at Granny Jane and Pop Jerry's house.

Tomorrow, I'm going to go into work for half a day and then we will head back to Little Rock and will need to be at the hospital by 6:30 a.m. Tuesday for Tanner's tests. Depending on how the day goes and how we both feel, I'm not sure if we are leaving to come back to Fort Worth Tuesday afternoon or wait and get up Wednesday morning. I really need to try and come on back Tuesday evening so I can have another day at the office before the holidays and before we go back for Tanner's next treatment. I guess we'll just see how things go.

Tanner seems to be doing pretty well. He has enjoyed getting to see everyone while we have been home and also has had some time to spend with his friends.

To say that I am tired, though, is an understatement.

Friday, November 20, 2009

Hmmm, I wonder when the nights of uninterrupted sleep will return? It's 4:20 a.m. and I've been up since 3:00 a.m. It's raning outside and I am listening to it falling against the house. I've always loved the rain.
I talked with John (the friend we made in AR) and he said that Benadryl is the best thing that he's found for sleep. He said the PA at Dr. Barlogie's office told him there's nothing in it that can hurt you and is actually the component that is added to Tylenol PM. The melatonin sure doesn't seem to be helping much yet.

Tanner has spent the last couple of nights with Pop Jerry and Granny Jane. She has been able to shower him with love - and food! I think they've had an opportunity to spend quality time together and have had some long conversations. It was probably good for all of them. I don't know what we would have done without all their love and support through this whole process. Now that I'm a granny and understand a grandmother's love, I know how hard all of this has been on Jane. A grandparent's love is a very special thing...

She is bringing Tanner to my work today and he has an appointment for labwork at Cook's hospital this afternoon. I got the results of the labwork that was overnighted to AR last week, and Tanner's Lambda Light Chains are still slightly elevated. Those are the numbers that indicate that there is probably still a little cancer there. Back in August, they were around 29 and now they are around 5.7 so he's in a much better place than when this first started. Hopefully, this next round of chemo in December will completely knock the rest out.

Tonight, Kirk is coming over to cook us spaghetti. Tanner loves the fact that Kirk puts wine in his spaghetti and thinks it's better than Olive Garden!

We are going to Beckett's first birthday party Saturday and then Sunday we are going to see Trevor again and then we will have our Thanksgiving meal with Granny Jane and Pop Jerry Sunday evening. Monday we will leave around noon and head back to Arkansas for the round of tests starting at 6:30 a.m. on Tuesday. Then we will come back to Texas to have Thanksgiving with our cousins in Aledo.

Later in evening on Thanksgiving, Tanner will go to Weatherford and will spend the weekend with his dad and Janet. My plans are to go to the lakehouse for a weekend with my cousins and am looking forward to margaritas on the deck! Everyone will have a chance to relax for a few days and then we will head back to Arkansas for the next round of chemo.

I talked with John and Lauren today and he doesn't have to return to Little Rock until January so Tanner and I might be on our own this trip. Lauren is having a mastectomy and they are allowing John's break to extend until after the holidays so that he can be at home with her. I need to check with our friends Tom and Shirley and see when they will be back in Arkansas. We will feel so alone if all of our new friends aren't there this trip.

I just pray that this round of consolidation chemo will be enough for Tanner and that he won't have to have another round. Some people only have to have one colsolidation but others have to go through two sessions. I know Tanner is looking forward to the day when the chemo is all behind him. He said he is just tired of feeling sick. We will both be thankful when he reaches the maintenance stage and our lives can return to a semblance of "normal".

Thanksgiving this year will have all new meaning...

Tuesday, November 17, 2009

It's been a time of visiting with the family. We went and had chili with my cousins on Friday, saw Trevor on Saturday, and went to our cousin Kathy's birthday on Sunday. Last night Uncle Terry, Aunty Cathy, Myles, Kelsey, Beckett and my niece T.D. and her family all came over for hot dogs.

Today, Tanner is going to work with me and we will go and see the Oncologist at Cooks at 10:30a.m. I am going to talk to him about writing a letter stating why he referred Tanner for treatment in Arkansas so I can send it to the insurance company when making my appeal. After the appointment we will meet Granny Jane and Tanner is going to go and spend a couple of days with her and Pop Jerry. They are really looking forward to spending some time with him and I'm sure Granny is anxious to shower some love (and food) on her Tannerboy.

I'm still not sleeping very well. I'm taking the Melatonin that my friend brought me but so far it hasn't seemed to help much. The only thing that seems to knock me out for 7-8 hours is Tylenol P.M. and how often do you take that? I hate to take it every night.

I'm just feeling a little adrift right now and need to find my footing again.

Saturday, November 14, 2009

It's been a fairly quiet couple of days. Tanner is having some problems with stomach acid lately. He had a lab appointment at 2:00 p.m. on Friday and since I get off at 1:00 on Fridays, he decided to go to the office with me so he could work on one of his school packets.

He seemed fine when we first got up but as we were driving down the highway, he told me he was going to be sick. I had to pull over on the shoulder and he was throwing up out the car window and it was all just stomach acid. Then last night he was nauseated again and was only able to eat a little soup.

I think maybe he's having too many fast foods. Also, it seems like if his stomach gets too empty, the stomach acid situation is worse. I'm going to go to the grocery store tomorrow and get some vegetables and meat to prepare on the grill and see if some "healthy" home cooking doesn't help him out. He also said it would be nice if I could make him some potato soup to have in the refrigerator next week while I am at work.

Once the nausea passes, he seems to feel fine. He isn't looking forward to going back to Arkansas and says that he's just tired of feeling bad. Hopefully, he will only have to undergo one round of consolidation chemo and can have some time to recover and gain his strength when we come back home in December.

Tanner, Kelsey and I left this morning at 8:00 am. and went to see Trevor. It was a great visit and I think both of the boys felt better just by being able to see each other and have a chance to talk and laugh for a couple of hours.

I know that it made me feel better just seeing them together for a while. It was a long day and I think both Tanner and Kelsey were feeling a little goofy on the ride home.

Thursday, November 12, 2009

Well, at least I selpt from 10:30 p.m. to 4:00 a.m. My friend, Donna Thomas, came to work today and brought me Melatonin which I took before bed, but my sleep was still really restless and here I am again very early in the morning. It seems I sleep well for a while but then I wake up and once awake, I can't shut my mind down. I gave it an hour of being totally awake and tossing and turning and then I just gave up and got out of bed.

Tanner seemed to have had a good day yesterday. Our cousin Jackie came over and played video games with him most of the day. Our weekend is full of plans from Friday to Sunday so last night he asked what we were going to do Thursday night. You know teenagers, they want to do something all the time!

I talked to John Regan yesterday and he said he's doing really well and will get to go back home this Saturday. He said this round of stem cell transplant / chemo was much easier on him than the first time. He's anxious to get home to his wife, Lauren. It's been very hard on both of them to be apart while the other has been undergoing their individual cancer treatments.

He thinks that he and Tanner will both be back in Arkansas, for at least a little while, at the same time again. He said he probably won't be back until nearly mid December and that he's resigned himself to the fact that he will be spending Christmas in Little Rock. I'm glad Tanner should be home for the holidays!

Tuesday, November 10, 2009

I talked with the scheduling people at MIRT today and they have scheduled ALL of Tanner's tests on Tuesday, November 24th starting at 6:30 a.m. Then we can't see Dr. Barlogie until Monday, November 30th so they said if his lab work all looks okay, we can come back home for Thanksgiving and just come back on the 30th in time to see the doctor at 10:00 a.m. After that appointment, they can put in his lines and start his treatment, hopefully, on Tuesday.

She said she felt it was important to allow Tanner to have his holidays at home so she scheduled everything so that he can have the tests and get all the results back in so that Dr. B can see them first thing Monday morning and treatment can start the next day.

It will be a fast trip up to Little Rock on Monday the 23rd and then have tests on the 24th and get back in the car and return to Fort Worth. The only thing that might alter those plans is that the bone marrow aspiration in Tanner's lower back is the last appointment of the day and I'm not sure how well he could tolerate a 5-1/2 hour drive afterwards. Knowing Tanner, he will say he's fine as long as he knows he can come home. He actually would probably be okay as long as he can put the seat back and just rest on the drive home.

If everything works the way they have it planned, we should be home for both holidays. From what I've seen so far the first week will mostly be applied to the chemo treatment, his system should bottom out by the end of the second week, and then he should climb back up by the end of the third week. If all goes according to that plan, we would be home before Christmas!

From what I'm hearing on the insurance front, it looks like the insurance company is saying that they will pay for one stem cell transplant (Tanner has had two) but they have denied coverage for the chemotherapy because they say it's "experimental" and is not according to the "standardized" therapy for multiple myeloma.

What they are not considering is that LESS than 1% of mulitple myeloma patients are pediatric patients. Who determines what it "standard" treatment for a teenager with multiple myeloma when it is SO very rare? From what I've gathered from my reading, the standard treatment is three chemo medications and Tanner has been given seven and his insurance says that is not acceptable.

I know that Tanner was given the most aggressive form of chemo that Dr. B prescribes but I feel that's because he's so very young and the myeloma was so aggressively destroying his bones. In an effort to give him a long and healthy life, I think Dr. B felt that the most aggressive form of chemo was necessry to assure they kill all these cancer cells.

Another thing that is bothering me is that they gave Tanner one form of chemo the first time and the insurance denied it as experimental. Then for the second treatment they changed him to another, more aggressive form of chemo and it seems it's been denied too. I guess the insurance company is denying both forms as experimental??

Now there's some person sitting in an insurance office saying Tanner's treatment is not "standard" and that he's been given too many drugs. I wonder if this person has a child - and if so how they would feel if they were in our place? It's just infuriates me.

At Tanner's next appointment, I'm going to talk to the children's oncologist and will ask him to write a letter explaining why he felt that Tanner (a pediatric patient) needed to be referred to Little Rock. This is the doctor who told me that we had two options; MD Anderson in Houston or MIRT in Little Rock.

I mean, my goodness, I've talked to patient after patient at the center while we've been in Arkansas, and NO ONE else that I talked to had an insurance company that has denied treatment. I've talked to one other person who's insurance would only pay for one stem cell transplant, but NO ONE else I've talked to has been denied for any reason - much less because the treatment has been deemed as experimental.

I feel that this is nothing other than an insurance company that is trying to get out of paying a claim.

It' just sad - and infuriating!!

Sunday, November 8, 2009

I went to bed at 10 p.m. and slept the sleep of exhaustion until I awoke about 2 a.m. I can't quiet my mind and go back to sleep. It's 6:00 a.m. now and I've been up and down and just can't fall back to sleep.

I keep thinking the sun will rise soon and maybe I can go for a walk. Maybe if I can just walk for a while, I can come back and go to sleep for a few more hours.

I'm home from Arkansas and should be relaxing for the next several weeks, but I can't settle in - I can't settle my mind down.

I've been thinking a lot about my mom; about my memaw - and wishing they were still with me.

It just keeps going around and around in my head. The doctor said that the fact that Tanner's Lamba Light Cells are a little high means that there might be a little cancer still there that they just need to "watch" -- but that they probably aren't active.

I just want it to be all gone. For him to be completely cancer free. I just wish I could take it all from him. All the cancer, all the worry, and all the treatments.

I know it's going to be okay. I know Dr. Barlogie has the treatment under control and that he's going to get all of this. Sometimes I just have a hard time dealing. I'm sure Tanner does too.

I've looked online for a teen cancer support group but haven't been able to find anything yet. I think I will ask Dr. Davis (the children's Oncologist that Tanner sees in Fort Worth) if he knows of any groups. I think it would be good for Tanner to have some other teenagers to talk to who have gone through some of these same things that he is having to deal with.

I don't quite know why I'm even here writing at 6 in the morning. I guess I've just gotten use to turning to the blog every evening and putting down how each day has gone, so here I am early on a Sunday morning when I can't seem to find rest.

I guess we all have good and bad days. I'm sure tomorrow will be a better day.

Friday, November 6, 2009

Well, we are home! We got in late and I was exhausted. I took something to help me rest and was going to try and sleep in late this morning but was up before 8:00 a.m. I decided to work at home so I hope that was all right with my boss!! I just couldn't face the idea of getting dressed and facing anyone this morning...

You would think that I would be happy and excited to be home, but I actually cried myself to sleep. I don't know what the deal is. Maybe I'm just tired. I know it will be better in a day or so.

Tanner has already gone out to his dad's house and his grandfather is going to come into town and the guys are all going to go fishing. With the weather ranging from 75 to 80, I know he will have a good time. He needs some time to relax and just have fun for a while.

We got to share a room with John and his sisters the day before we left, and John's sisters entertained us with a cheer they made up about Dr. Barlogie and treatment on 7C. They were hilarious and Tanner laughed so hard he had tears in his eyes. It's great to meet such wonderful people as we have had an opportunity to meet while we have been in Arkansas.

They ended up giving Tanner a platelett transusion yesterday before they would take his triple lumen lines out. The nurse thought they might have come up on their own, but they had only risen from a 37 to a 39 - and his white blood count actually dropped from a 9 to a little over 5. I'm sure it's because they quit giving him the growth therapy shots and his body slowed down producing the white blood cells.

I will call his Fort Worth Oncologist office today and make his appointments starting next week. We will be home until right after Thanksgiving so I will only update if something significant happens until that time.

I hope Tanner has a wonderful relxing break...

Wednesday, November 4, 2009

We went to 7C this morning and I asked the nurse if she could check and see what time Tanner's appointment was with the Dr. on Thursday. She came back in and said it was for 11:30 a.m. this morning (by then it was about 11:10 a.m.) instead of Thursday. Tanner was dehydrated and needed a fluids transfusion so by the time they were through, it was noon before we made it to the doctor's office.

Dr. Barlogie is out of town so we saw Dr. Naier. I love Dr. B to death, but Dr. Naier sat down and took his time and just answered our questions. No hurrying or running off to other rooms (though we did have to wait about an hour and a half to see him). We asked about the lesions in Tanner's bones and the fact that first they told us they could heal the lesions, and then we were told if there's a lesion in the bone, there will always be a lesion in the bone. He said that yes, there would always be some kind of spot on the bone wherever there's a lesion, but that they would get smaller. He said there are drugs they can give to help harden the bones and that we would talk further about them after Tanner finishes Consolidation (75% strength chemo) when we come back.

I asked about the lesion in the right femur and if he thought it would heal enough on it's own and he looked at the latest scans and said that lesion was nearly 10cm and would most likely need surgery but that it would be something we would need to discuss with Dr. Nicholas.

He said the latest MRI that was done last week while Tanner's system was supressed showed that things were "stable" and that it would take about 1 to 1-1/2 years for Tanner's lesions to heal to their full potential.

He said something about Tanner's Lambda Light Chains still being around a "5" and that there might still be a "little cancer" there and that it would be something "we would watch" and give him some time to recover from treatment and see how things progress. I asked if that was common and he said "we see it sometimes". This will have to be something I will for sure make a point to discuss with Dr. Barlogie when we come back from this next break.

His plateletts rose to a 37 but the doctor said that they could go ahead and do a platelett transfusion in the morning to raise it on up to 50 and send him to the hospital and have the triple lumen lines out. He said we would need to come back the first week of December for his Consolidation Chemo.

The thing is, Tanner has to be cross matched for plateletts and has to take pre-meds because he has an allergic reaction. We will go up in the morning so he can have his pre-meds and transfusion and depending on if he has a reaction or not, will have his lines removed and we will head back to Texas. Depending on how long that takes, we will go home either tomorrow afternoon or Friday morning. We will just see how things go tomorrow.

As we were leaving the office, Bonnie (Dr. B's assistant) saw us at the elevator and told me she heard that Sandra (the insurance lady) said that she was having to fight with our insurance company. I asked if they turned coverage down again, and she said she didn't know for sure but that she was told that they are still saying the treatment is experimental and is not "standard".

She recommended that we start writing letters to the Dept of Insurance, our state representative, and HHS. She said that they would continue to fight also, and that many times they win those fights. I just pray with all I've got, that this is a fight we will win for Tanner also.

What will we do if we have no insurance coverage for all of this treatment Tanner needs in order to save his life?? I told her that I will start contacting everyone I can think of to try and help us with these insurance issues during these next few weeks while we are at home.

Tuesday, November 3, 2009

We started out really well today. Tanner was feeling so good he took his Latch & Hook Rug up to the hospital and worked on it while we were waiting on his labwork results (the nurses all got a kick out of that!). When the report came back, we found out that his white blood count rose up over 3 so he's no longer neutropenic. Yea!! His plateletts are still in the 20's so they still have to rise to 50 (or at least near there) before he can come home.

He was so excited that he could go out in public he wanted to go to On the Border for lunch. We drove straight there from the hospital and ordered our food and all of a sudden he got really pale and light headed and felt like he was going to throw up. We had to ask the waitress to pack our food up to go and we came back to the apartment.

He's feeling really weak and when we got to the apartment, he went straight to the couch. He couldn't eat his enchilidas because the cheese was making him gag. I made him some chicken noodle soup but he's having a hard time even getting that down.

His blood pressure was 97/56 - which is still pretty low. I told him even if he couldn't eat much right now, he needs to try and get some fluids down.

It's so up and down with him right now and he just wants to feel better so bad. He's had a much harder time dealing with this round of treatment than we thought he would - especially since the chemo was just one day.

I can't wait for the day he feels good again!

Monday, November 2, 2009

All in all, it's been a better day. They gave Tanner a platelett transfusion yesterday and that always gives him a "boost" the next day. Seeing if he feels better tomorrow will be the real test after he's 48 hours post transfusion.

The only real problem he's had today is that his back is hurting. When we told the nurse about it at the hospital today, she said that's a good thing because it means his body's bone marrow is producing new stem cells and is a "good pain". As the day has gone by and the pain has worsened, he's not so sure how "good" it is. He asked me why it would be just one spot in his back that is spasming and that he's going to ask the nurse that question in the morning.

I just got back from Walgreen's and bought him a heating pad. He said it "melted the pain". He didn't sleep much last night because of the pain, so he wants to take something to relax him before bed. I hope he doesn't have another really bad night.

His numbers are rising but are nowhere near high enough for him to go home yet. Hopefully, they will start rising by leaps and bounds. His white blood count has to reach a 2.0 (today they were .41) and his plateletts have to be 50 (they were 29 today - but that's a day after transfusion so they will most likely drop a little before they rise back up again). He will have to hit those numbers before they will take his triple lumen line out and they don't do that on the weekend so if he doesn't hit them by Friday, then it will be Monday at the earliest before we could leave.

Of course, now that Dr. Barlogie has said "discharge on Thursday", Tanner really, really wants to leave ON THURSDAY. He asked me today if we could leave Thursday - even if it's late after they get the lines out. He said he could "help drive" and that he needs only one leg to drive. Like I could relax with Tanner driving with one leg in a cast!!

Sunday, November 1, 2009

It hasn't been a very good day today. We went to the hospital this morning and Tanner had his platelett transfusion, some IV fluids, and a nausea medicine drip.

We came back to the apartment and he seemed to feel better for a while and got on his laptop for the first time this week. He played on the computer for about an hour and then he said he wanted to lay down on the couch. After about thirty minutes he got up and just went and got in bed.

I just keep waiting for him to feel better...