Tuesday, December 29, 2009

Channel 33 did a short story last night regarding some of Tanner's trials over the last several months.


Thank you to those of you who have reached out to offer us your good wishes.

Tanner is an amazing young man who has maintained a positive attitude through the nightmare of being diagnosed with Multiple Myeloma and through all the sickness he has endured while undergoing some of the most gruelling and aggressive chemotherapy that anyone could have experienced.

This last week, we have found that the reporters interview for hours and then condense the information down to one or two minutes and you never know what they are going to actually report. When asked who inspires him to keep fighting while going through all these treatments, Tanner said that he thinks every day of the battle that his cousin Kelson fought with cancer and that it helps him to be stronger.

He also thinks of his cousin Beth and the battle she has fought with her Moyamoya and is so grateful she was able to come home for Christmas and spend some time with us these holidays.

While in Arkansas, Tanner and I have had many long conversations and I can tell you, he thinks of the battles that Kelson and Beth fought with their diseases and they both inspire him to be as strong as he can when facing a future with Multiple Myeloma.

As he told the reporter yesterday, he did get what he wanted for Christmas; he is in full remission and was able to come home and spend time with the family and friends that he loves.

Monday, December 28, 2009

Thank you for all the love and support we have received since returning from Little Rock and discovered our house burglarized.

An article ran in the Fort Worth Star Telegram today ( http://www.star-telegram.com/local/story/1855796.html ) and Channel 33 is running a story tonight at 5:30 and 9:00 p.m. regarding all that Tanner has been through these last several months.

Some people have asked about Tanner's Medical Fund and also how to contact us if needed so I thought I would update with this information:

Tanner Walker Medical Fund

Bank of America

Account# 488023075647

We can also be contacted through my employer:

Angela Walker

C/O Professional Insurance Elite Agency, LLC

6300 Ridglea Place, Ste 1111

Fort Worth, TX 76116

Again, thank you all of your love and support. As Tanner and I have been reminding each other since we discovered our house broken into, the most important thing to remember at this time is that he has reached remission!

Wednesday, December 23, 2009

It has been a hectic few days since we arrived at home.

It took a few days just to work through the stacks sitting on my desk, but I think things are settling down - and I'm settling in.

Channel 11 news did a short story on the burglary on our home and the fact that Tanner's insurance has denied coverage for his chemotherapy.

The last few days, we have been interviewing with the Fort Worth Star Telegram and this morning we met with a photographer out at the house to be used with the article.

The reporter told me today that the story is due to be turned in tomorrow morning and should run in the paper around Christmas. He said either Christmas day or the weekend after Christmas and that I should just be watching the paper (thankfully I have a weekend subscription).

My sister-in-law, Cathy, works for the Star Telegram, so I'm hoping she can give us a head's up on the actual date.

Tanner has settled down since the burglary and has been able to spend some time with his friend, Gus, since we've gotten home.

Tonight we are going for Christmas at our cousin Jesse's house, tomorrow we will go for Christmas at Granny Jane and Pop Jerry's house, Christmas day we will go out to our cousin Kathy's house, and then Tanner's dad and step-mom will pick him up sometime in the afternoon Christmas Day and he will go and spend some time with them. Whew!

Christmas for days!!

Granny Jane met us and took Tanner to the doctor for me so that I wouldn't have to miss any additional time at work today.

All in all, things seem to be going well. It's hard for me to update on a regular basis since I don't have a computer at home but I will try to post at least every two to three days.

Shirley, if you are reading this, I hope you met your numbers and that you and Tom are at home for the holidays! Tanner and I miss you both!!

We wish you all a Merry Christmas!!

Saturday, December 19, 2009

Tanner and I have made it home!

I woke up at 4:30 a.m. on Friday morning and couldn't go back to sleep so I decided to go ahead and get the car packed. I had everything ready to go by 6:00 a.m., so I woke Tanner up and asked him if he was ready to get on the road. He jumped right up (as much as he can "jump" in a cast).

We were at the door of the apartment on the way out when Tom came over to see if I needed any help loading my car. When I opened the door, he told me he didn't think I could get another thing in my vehicle! It was packed from top to bottom in the back seat and the trunk. I had reclined Tanner's seat and then I just loaded things around him.

We were both so excited at the thought of getting back home and having Christmas with our family! We were on the other side of Dallas, when my cell phone rang and it was Granny Jane telling me that my house had been broken into.

Needless to say, Tanner and I were pretty upset. We were so looking forward to getting home and relaxing for a while and instead we had to deal with the fact that the house had been burglarized.

My cousin, Kirk came over to my house on Wednesday night at 10:30 p.m. and everything was fine and then Friday morning, Kelsey went to the house to leave some Christmas gifts and when she opened the door, found that we had been robbed.

They took our big screen TV, our home computer, a Dell laptop, our modems (which is why I'm only now updating the blog) nearly all of our DVD's, all of my jewelry, car stereo speakers, and Trevor's and Tanner's video cameras.

Whoever did this seemed to know where we kept most of our posessions and they came in through my small bathroom window. Tanner was just devastated because he feels like this is someone that we know; someone who knows what he is going through.

When we arrived at the house, we discovered that our family had put lights on the house, decorations in the yard, and had put up and decorated a Christmas tree - not to mention stocked our pantry and refrigerator with food!

They had done all that they could to ensure that we would have a wonderful Christmas surprise when we arrived home, only to have it marred by the fact that someone had broken in and stolen from us.

After finding our house burglarized, Kelsey contacted some of the local news outlets and gave them the background story. Channel 11 news contacted me and came out and interviewed us yesterday evening and the story was on the 10:00 p.m. news last night. Tanner did great during the interview and the only thing I can hope, is that maybe the insurance company will reconsider their decision to deny coverage.

I am at my niece's house so that I can update the blog (since my computers and modems are gone).

As I told Tanner, we can replace our material possessions and that I am just grateful that he was given the diagnosis of full remission before we left on Friday.

We are going to try and enjoy the holidays and will be heading back to Little Rock in mid-January. Of course, I will be having the alarm system turned back on at the house - and will do my best to just have someone in my family stay there for the few days that we should be gone during this next trip.

I will continue to update as I can while we are at home.

Thank you all for the love and support!

Wednesday, December 16, 2009

We went over to Aunt Tincey's house this evening and had homemade chili and visited with them one last time before we head back to Fort Worth for our break.

One of the back tires of my car kept deflating so I went to the tire shop today and they told me it had already been patched twice and would be dangerous to drive home with it in that condition. I went ahead and had them put on a new tire. I'm glad I had it checked out before we headed home. I kept having visions of us on the side of the highway and me having to unpack the wheelchair and all the luggage to get to the spare!

I've been working on cleaning the apartment and getting things ready to pack and load. It's a lot of work - and I'm not through!!

We go tomorrow moring for labwork at 10:00 a.m., see Dr. Naier at 11:30, and then go and get Tanner's triple lumen lines removed in the afternoon. I've just come to the decision that I have too much work still to do to stress over trying to get everything cleaned, packed, and loaded after our appointments tomorrow. I think I've decided that I will get up early Friday morning, load the car, and we will head back first thing in the morning.

We went to MIRT this morning and talked to them about Tanner's cast and the fact that they were not able to perform the DWIB test last night because of the metal in the hinge. Martie (the nurse), went to the back and talked to Dr. Naier and he said we could just wait and have it done when we come back in January for the re-staging tests.

I will make the January appointment tomorrow while we are at the office and then I can call Dr. Nicholas' office and arrange for Tanner to go in and see him for x-rays and to get the hinged cast removed before the testing starts.

Martie told me that they have air casts that they could probably put on for a few days while the tests are done and then they can put another cast on him after the re-staging is complete.

I'm sure we'll get it all worked out. I'm just glad they didn't have to take the new cast off today!

Tuesday, December 15, 2009

Well, they put a new cast on Tanner's left leg this morning. It has a short cast on the bottom of the leg and a short cast on the thigh and then it connects around the knee with a hinge so that he can move his leg and get some relief from it being in one position all the time.

It hurt Tanner considerably when they took the old cast off and tried to straighten his leg out. It was stuck in that slightly bent position at the knee from where the old cast had him positioned for nearly six months.

After having it on all day and being able to move his knee around, Tanner has decided that he likes it much better than the regular full leg cast.

We went up to the hospital tonight so that they could perform the new "DWIB" test that Dr. Barlogie ordered and come to find out, it's performed in an MRI machine and they can't do it with metal in the cast.

Soooo, in the morning they are going to call MIRT and see what Dr. Barlogie wants to do. They said maybe he will let Tanner wait and have the test done when he comes back in January or he might want them to take the cast off, put on a splint, do the test, and then re-cast him. Or, he might want them to put him back in a regular cast since Tanner has to have a full range of tests done in January.

I personally hope that he will just let Tanner wait until January when we come back for all the re-staging tests, but you never know what he will say. If he wants to see the results of these tests badly enough, we will probably be heading back to the cast room tomorrow to have the cast removed.

I thought for a moment there that Tanner was about to get a little teary when they told him the doctor might want him to go over and have the new cast removed tomorrow so they can do the tests.

I guess these doctors just don't communicate with each other before these decisions are made. You would think an Oncologist Orthopedic Surgeon who is used to treating Dr. Barlogie's Multiple Myeloma patients would realize how many tests are undergone every 1-2 months. But then again, I don't think they've had too many patients who have had to stay in a full cast for six months at a time.

We are going in at 8:30 a.m. tomorrow for labwork and then we are just going to walk over to MIRT and see what they want us to do.

On a lighter note, we went across the street today and visited with Tom and Shirley. Tanner wanted to show off his new cast - and also take them some Turtles (candy) that we bought them for Christmas. They gave Tanner a new Northern Face toboggan for Christmas and he and Shirley both put them on and looked like twins!
We are really going to miss them when we go home and hope that we all stay in touch. They have been wonderful neighbors!

Monday, December 14, 2009

Dr. Barlogie told us that Tanner is in FULL REMISSION!!

When Dr. Barlogie first came in the room, he asked Tanner if he was ready to go home and he told him yes, and then the doctor looked at the latest lab report in file and the number's were still really low. He told Tanner there was no way we could go home yet and that maybe we could go later in the week.

Tanner told him has back had been spasming all the night before and all day and to look in the computer for today's results because he thought his numbers might have come up (when his back was spasming on our last trip, a nurse told him it was because his white blood count was coming up). The doctor looked at today's results and his white blood count was 2.02 and his platelets were 48 (they have to be a 50 to go home). In one night his labwork rose all the way up to just one point from being able to be dismissed!!

He's in considerable pain from the back spasms, but it seems to be a sure indicator for when his white blood count is rising.

They could actually dismiss him tomorrow and take his lines out but Dr. B wants Tanner to have a new test to check his bone density and they can't do it until tomorrow night at 7:30 p.m. Then, he has to go back for his dismissal appointment and Dr. Naier (Dr. Barlogie is out of town the rest of the week doing a presentation) can't see him until Thursday. That appointment is at 11:30 a.m. and then they will have to send him to the hospital to get his lines out, so at the very earliest, it would be late Thursday afternoon before we can head home.

Dr. Barlogie told us that we need to come back in mid-January for "re-staging". I asked what that was and they told us he will have to go through all the tests again and they will determine where exactly he's at before they put him on a maintenance program.

At this point, if nothing significant changes, he should be through with chemo and can just move on to a maintenance program!! The nurse told us that even if, for some reason, Dr. B decides he has to have another consolidation chemo, it shouldn't be something that can't be worked around Tanner's schedule. They don't foresee any emergencies arising. Everything with Tanner's multiple myeloma has progressed the way it should and now we'll see if his broken bone will heal with some time off of the chemo.

Dr. Barlogie seemed very surprised to hear that Tanner's broken tibia isn't healing and asked me if Dr. Nicholas' told me what his thoughts were on why it hasn't healed. I told him Dr. Nicholas said he didn't really know why. Dr. B seemed to think it's because Tanner has been going through so much chemo so I'm just trusting that with some time without all these poisons being pumped into his body, maybe his bone will start to actually heal on it's own without surgery.

They were supposed to change his cast this morning but the man who was scheduled to swap them was out sick. They want us to come over tomorrow morning after his labwork and said they would do it then. I asked what if David is still sick, and they said if he was still out ill, then someone else would go ahead and change the cast for him. They explained to us that if Dr. Nicholas requests someone in particular, then he's very insistent that specific person actually be the one who performs the procedure.

Today is my Aunt Tincey's birthday so we all met at Olive Garden for dinner tonight. Tanner wanted to celebrate her birthday, the fact that he's in remission, and that he can now go back out in public again!

It was a great time. Having an opportunity to spend time with Aunt Tincey, Julie, Alston, and Trinity has been one of the of blessings that we've received from spending time in Little Rock.

Sunday, December 13, 2009

Tanner's white blood count was .64 on today's report so he definitely can't go out in public right now. Hopefully, these will be his lowest numbers and he will start to rise from here. I definitely don't think he will be released in the next couple of days - but I do think we will be home some time within this next week.

We go tomorrow at 8:30 a.m. for his labwork, the new cast at 10:00 a.m., and then to see Dr. Barlogie at 11:30 a.m. It took quite a while when they put the last cast on so I'm hoping we won't run late to the doctor's appointment (though we nearly always have to wait 1 - 2 hours when we go to the doctor's office).

I'm kind of dreading the cast appointment. The last time they put a cast on, they had to squeeze on his leg where the break is to keep the fracture aligned and it hurt him so much he was in tears. I just hate to see him go through that pain again - especially since they are putting on another long cast and it feels almost like he hasn't made any progress at all after six months of living in a full cast.

When he first broke his leg in June, we never dreamed he would have to go through all the treatment that has entailed since then. We sat in the emergency room that night and for all we knew it was a simple broken leg and then the doctor walked in and said those words that started our lives on a different course, "there's a tumor in his bone".

You go along living your life day after day, never considering that it could all change in an instant and then something like this comes along and smacks you in the face and you realize that your life is forever changed.

Tanner has had the best attitude through all of this. You couldn't ask for anyone to have a better attitude than he has since he was first diagnosed - but he's come to a point here six months later that you can tell he's getting tired.

If Dr. B tells him tomorrow he has to have another round of consolidation chemo, Tanner said he's going to ask him if he can have at least two months to just "recover" and live at home before he has to go through any more treatment. I just hope he handles it okay if Dr. Barlogie tells him he needs to go ahead with another chemo round without delay.

I tried to tell him he could look at it two ways, if the doctor says he can have a two month break then he will get a nice long rest, but if he tells him he needs to go ahead with the chemo as soon as possible, then he will be getting the last of the chemo behind him so that he can go on with his life. He didn't seem to think much of my reasoning.

Saturday, December 12, 2009

There's not much to post today. We went in to the clinic at 8:00 a.m. this morning and according to the numbers from yesterday's labwork, he's now neutropenic again. Hopefully he will hit bottom this weekend and will start back up so we can head home some time next week.

It's cold and rainy here in Little Rock and Tanner isn't in a talkative mood so it's been pretty quiet. We just got through watching Harry Potter and the Half Blood Prince and now he's burning CD's.

We saw our friend John Regan and his daughter Cindy at the Myeloma Clinic yesterday. He wasn't supposed to have to come back to Arkansas until January but the day after he got home, he started with a rash and fever and they had to put him in the hospital for three days. I talked to his wife Lauren a few days ago and she said he was so sick and weak he could hardly even walk to their table. They contacted Dr. Barlogie's office and he wanted them to get John back down here as soon as they could.

Tanner and I were sitting in the waiting room at the MIC yesterday when Tanner said he saw them bring John through. He said he was having to lean on two people and they took him straight back into the clinic without having to wait. When I saw Cindy a few minutes later, she took me back to see him. He looks so bad that it was scary. He told me that he lost twenty more pounds since he'd left to go home. He still sounded like the same old John though and he and Tanner had an opportunity to visit and laugh for a few minutes. He likes to tease Tanner for "showing off" since John started treatment a week before he did and now Tanner is "ahead" of him.

Cindy called today and said they saw Dr. B for about thirty seconds yesterday and he made things "start happening". They saw an infectious disease doctor for over two hours last night and they say they think he had a drug reaction that has evolved into a GI infection. They are treating all of this with massive doses of steroids. Dr. B told John he was in good shape as far as the Multiple Myeloma goes; now they just need to treat the infections and skin rash.

The doctor's at home had been trying to treat all of this for weeks, but I tell you, most of the regular oncologists just don't know multiple myeloma. I've come to the conclusion that if we are at home and Tanner has any difficulties at all, I will immediately notify MIRT just to be on the safe side. They just have all of this so fine tuned between all the doctors and all the specialties at UAMS and seem to be ready for any eventuality.

We met a couple at the MIC this morning who were telling Tanner and I that the husband has been coming to see Dr. Barlogie for eleven years now and that he's lived as normal a life as possible (for a MM patient) and has continued to work and travel the world all these years. He told Tanner to just trust in Dr. B and try to do everything he recommends.

We meet new people every day at the clinic and you never know what kind of story you are going to hear. One thing for sure, whenever anyone sees Tanner and how young he is, they always want to hear his story.

Friday, December 11, 2009

Well, the news from the orthopedic surgeon today wasn't so good. He said that the fracture in Tanner's left tibia isn't healing and that there isn't any calcium growing in the break. He said we would blame it on the chemo, but that other patients going through chemo have healed after this length of time. They did labwork to check on Tanner's calcium and Vitamin D levels to see if they might be an issue in his healing and we should see the results on Monday.

This means that he can't have a short cast yet - and if it hasn't started healing by January, he will have to consider going in and putting a rod in that leg. In the meantime, since he has lost some more mass in that leg, they are going to put on another full leg cast Monday morning.

I told Dr. Nicholas that I could hear Tanner moaning in his sleep the other night and when I asked him about it the next morning, he said he just needed to be able to move his leg. The doctor said they do have full casts with "braces" to where Tanner could bend his knee and move his leg around to a degree.

He told Tanner he could lightly rest the leg on the gound, but not to try and put any weight on it or take any steps on it. Tanner and I were talking about everything on the way back to the apartment and he said if the "brace" was going to be bulky (to where it could interrupt his sleep) he's going to ask them to just put a regular cast back on.

Since, at this point, he's been in a full cast for nearly six months and it looks like he will be in one for quite a while longer, I'm going to see if they can put on a goretex cast so he can just take a regular shower. I know I would have to pay the difference in cost between a regular cast and the goretex, but it would just make Tanner's life so much easier if he didn't have to worry about keeping it dry all the time.

He was, in his words, "pissed" with the news that he has to stay in a long cast. We were talking after Dr. Nicholas left the room for a few minutes and Tanner told me that he wants Dr. Barlogie to give him a 2-3 month break so he can see if his bone will heal and to also see if all of this treatment is "really working". He told me he talks to people all the time who were in remission anywhere from a few months to a few years only to have the cancer come back and that he's scared it will happen to him.

I told him that I couldn't comprehend what he's having to go through, but that I understood that fear because I worry too and that only time will reassure us both that he's going to be okay. It's the first time he's really opened up to me about the fact that he's scared and it break's my heart that I just can't "fix" all of this for him.

After coming back to the apartment and eating he seems to be in better spirits.

My work sent three boxes full of Christmas gifts for us and we opened two of the boxes last night and saved the last box for tonight. We just opened the many gifts that were sent from everyone that I work with at our home office and, believe me, he's now in a better mood!

I truly love the people I work with and can't express how much the fact that they thought of us and sent us some Christmas cheer from home meant to us both. Thank you all - for everything!
It was a nice ending to a rather stressful day!

Thursday, December 10, 2009

It's been another good day with Tanner feeling really well! It's so cold, he doesn't want to do anything after we get out of the clinic but go back to the apartment. He's been playing X-Box 360 for hours while I have been working.

His numbers came down a little, and will most likely be a little lower tomorrow since day 10 is when most patients usually bottom out. But regardless, he feels really good!!

We went to Aunt Tincey's house for dinner last night and she had pork loin, peas, baked sweet potatos, corn bread, fruit salad, and cucumber salad (which she made just for Tanner). Tanner had two full plates and extra bowls of cucumbers. I was afraid he was going to be sick from eating so much but he was fine and he enjoyed her home cooking!! It was nice being out of the apartment for a while - even though it was really cold outside!!

Tomorrow we go in for his labwork at 11:00 a.m., x-rays at 1:00 p.m., and then see Dr. Nicholas (the orthopedic surgeon) at 2:00 p.m. That cast better be coming off is all I can say! Tanner is counting on the long cast being removed and a short one being put in it's place. We are going to see if they can use goretex for the short cast so that it can get wet (which would make his life so much easier).

Can you imagine being in a long cast to your thigh for over five months? To have your leg in one position with the knee slightly bent month after month??

He's handled it so much better than I ever could - but at this point he really, really needs to be able to just move that leg. We are both going to be SO disappointed if the long cast has to remain any longer.

The appointment with Dr. B's office has been changed to Monday morning at 11:30. We are hoping that Tanner will be recovered enough to be released early next week. I feel sure we will be home by the end of the week, if not before.
We need to also ask the doctor about the "chemo acne" that Tanner has acquired. They have given him two rounds of antibiotics but the rash is getting worse rather than better - and is moving now down to his torso. He told Dr. B he'd better not make it through cancer to only come out the other side with acne. The doctor just laughed and assured Tanner that it's temporary --but it sure doesn't look very comfortable!!

We just don't know how long we will get to stay at home. Will Tanner be on maintenance so we can be home for at least three months, or are we looking at another consolidation and just another short break?? We won't know the answer to those questions until Monday.

At this point, the nurses and I both are just grateful he's back to his sweet funny self!

Wednesday, December 9, 2009

It has been a really good day and Tanner says he feels great!! He had me move his recliner closer to the TV and he's been playing X-Box 360 for hours while I have been working.

His white blood count is over 11 and he was only neutropenic one day this round of treatment! The nurse said he could still drop a little over the next couple of days but she can't imagine that he would drop very much.

I asked her if it was normal to only be neutropenic one day with consolidation chemo (at 70%-75% strength) and she said you see it "occasionally". The only thing that would stop Dr. Barlogie from releasing Tanner now is the fact that his platelet count is going down instead of up. In the last few days it's gone from 164 to 125 to 87. You only have to be at 50 to go home but they can't be on a downward spiral when you are released.

She and I discussed that maybe it would be better if we could change our appointment with Dr. Barlogie to Monday instead of tomorrow and then if everything looks good over the weekend, he might go ahead and just release Tanner. Also, if we don't see Dr. Barlogie until Monday, we could tell him everything Dr. Nicholas tells us about his bones at the Friday appointment.

The PA emailed MIRT today to have them ask Dr. Barlogie if the appointment could be moved. She said she would tell me in the morning what they said - but she also said not to count on it because Dr. Barlogie is a stickler about his appointments. The nurse and the PA are just trying to help Tanner and I avoid going to MIRT tomorrow and having to wait hours and then have to go back next week and have to wait again to be released. Whichever way it goes will be fine. By this time, Tanner and I both are pretty patient - especially when going to see Dr. B.

We are going to dinner tonight at my aunt's house and Tanner want's me to stop and buy cucumbers so that she can "teach" me how she makes her cucumber and onion mixture. Of course, mine never tastes like Aunt Tincey's! LOL!!

In the mail the last couple of days, we have been getting Christmas cards from some of my PIE (where I work) agents and have received some generous donations to Tanner's medical fund. It has really touched my heart that even though these agents have already given generously to Tanner's fund, they are thinking of him once again at Christmas and are reaching out to make things better for him.

Thank you all!!

Tuesday, December 8, 2009

It's been a pretty good day. Tanner has felt well all day and even had me hook up his X-Box 360 for the first time since we've been here this trip. He only played for a little over an hour but at least he seems in much better shape than he's been in since we started this round of chemo

I was warming up some of the soup I made yesterday for supper and he asked if I would go out and get him some more tacos. You always know Tanner feels better when he wants his tacos.

His white blood count was around a 2 yesterday so he was considered neutropenic. Today it has risen over a 9 and his platelets are 125 (they have to be 50 or more to be able to go home). I'm sure what has brought his numbers up so high is that they started giving him the growth factor shots on Sunday.

The PA said his numbers might still drop back down again because patients usually hit their lowest on day 10 (starting the day chemo starts). Day 10 for Tanner will be Friday. But, she said since the chemo was at 70% normal strength and as young as Tanner is and as quickly as he has historically recovered, he might not drop back down very much lower.

If his numbers stay stable around where they are right now, he could be very well released much earlier than we figured. He and I both are not counting on that because one thing we've learned these last several months, is you don't know what each day will bring.

We are just both grateful he had a good day today - and hope they continue.

Monday, December 7, 2009

We started off the morning really well with Tanner in a great mood and laughing and talking with the nurses. He even wanted some breakfast while at the clinic so we got him some scrambled eggs and potatos.

We were ready to leave and I was loading his wheelchair in the back of my car when a vehicle stopped and I saw someone running up to me. It was Anastasia, a lady whose husband, Harris, started treatment at the same time Tanner did. She and her husband are from Greece so they haven't been back home since they came in July!! It was great seeing them!! I had been wondering how they were doing and hadn't seen them since we got back to Arkansas. She said Harris got sick last month with his chemo/stem cell so he's just starting his consolidation. I am so glad we had a chance to see them - and Harris looked great! They are only in their thirties and are some of the youngest people we have met going through treatment. We were all in the same orientation class when we first arrived in Little Rock and it just feels good to see him looking so well, and of course Anastasia is just as beautiful as ever!

Tanner has finished a school packet and since he was feeling so well, we thought we would stop at the post office and mail it off on the way home. All of a sudden, Tanner got really hot and pale and I took him back out to the car but he couldn't get out of the wheelchair right away. He said he needed to sit there for a minute and then he just got really sick. The poor man parked next to us had to wait at the end of his car and then tiptoe through everything to get to his door. Thankfully, he was really kind about it all.

We are back at the apartment and I am warming up some soup I made yesterday. Tanner is asleep in the recliner but every once in a while I can hear his stomach rumble and roll. I'm sure his system is bottoming out and we just never know from one day to the next how his stomach is going to do.

Last night some children from the Little Rock Church (they sponsor Home Away From Home where we rent our apartment) came by and sang some Christmas Carols and gave Tanner a basket full of Christmas goodies. They were so cute and Tanner and I both enjoyed their visit. One little girl gave Tanner a little paper Japanese fan and told him she made it specifically for him.

Tanner couldn't go outside to see and hear them because of his legs and the fact that it would be hard for him to get around, so we opened up the patio door and they all gathered around and sang three songs where he could sit in his recliner and watch them.
They were great and Tanner just smiled the whole time at all the kids.
It was very special for all the little children to come and sing to the cancer patients in the apartments and I know everyone must have enjoyed them as much as we did.

Sunday, December 6, 2009

It's getting cold enough here that I'm going to need to start going out and warming up the car before Tanner and I leave for clinic, especially now that our appointments are at 8:30 a.m.

He and I went out to the car this morning and it had frost all over the windshields and had to be defrosted before we could leave. I tried to get Tanner to go back inside while I warmed it up but he said that since he was already outside he didn't want to go back in the apartment. We had a few minutes out there that was pretty cold!

According to our schedule, our appointmens are at 8:30 a.m. throughout the rest of our time this trip. It's nice because it's not very crowded and you don't have to wait so long since they haven't had time to get behind for the day yet. It's bad because we have to get up and out so early!!

Neither he nor I slept well last night. I was so tired that I went to bed before he was even through watching his Plant Earth video. Since I was so tired I figured I wouldn't need anything much to help me sleep so I only took 1/4 of the sleeping pills they prescribed for me. Wrong! Once I woke up around 3:00 a.m. I still had a hard time shutting off my mind and going back to sleep.

When we were at clinic Tanner told me he didn't sleep well last night either. I told him I kept hearing him moan and he said it's because of his leg and that he just needs to be able to move it. He is going to be crushed if Dr. Nicholas doesn't take the cast off at the appointment on Friday. Even if he has to put on a short cast, at least he will be able to straighten and bend that leg. It's been in that slightly curved position since the first of July! He's handled it much better than I ever could have!! The nurses and PA's tell him he'll probably have to have physical therapy since it's been in the long cast so long.

They looked at his lab reports from yesterday and his potassium was low and they ordered him an infuser but before it came in, his report for today came through and his potassium had risen on it's own so they decided he didn't need one.

His white blood count is dropping and they think he will be neutropenic (no immune system) by tomorrow so they gave him a mask to wear when he comes to clinic in the morning.

He layed down in the recliner as soon as we got back to the apartment and said he wanted to take a nap so I went to the grocery store. I've come and gone and he's still asleep so I'm trying to be quiet.

I hope he doesn't sleep so long that he won't be able to rest tonight. These 8:30 a.m. appointments are hard on a 17 year old boy - and his mother!

Saturday, December 5, 2009

The DEX is finished and the chemo bag has been disconnected! You can already tell that Tanner is feeling better.

I wouldn't quite say he's his "old" self because he's still pretty quiet, but he wanted to go out to eat after we finished at the clinic today. He wanted a salad from Chili's before he get's neutropenic and can't have lettuce anymore.

We've talked quite a bit the last couple of days with some more of our neighbors at the apartments, Sandy and Rich Allen. They seem very nice and Sandy has been going through treatment here in Little Rock since 2007. She understands Tanner's frustration with the length of treatment and has been very encouraging to him. Tanner said maybe when he and Sandy are both feeling a little better, we could all go out to eat together.

He's feeling so much better he wants to use the computer this evening so I'm going to keep this short and sweet. It's been a much better day and we are both so grateful that the chemo for this round is through!!!

Friday, December 4, 2009

Today has been a little better than yesterday, though you can tell that Tanner's energy level is decreasing as the afternoon wears on.

He started out the morning much like he did yesterday - meaning very silent and withdrawn. I got him up around noon and he had some potato soup before we left for the clinic. We had to wait over an hour in the waiting room at the MIC and I was talking to some of our neighbors from the apartments and Tanner was totally silent. Then he went and got a Twix Bar from the gift shop next door and all of a sudden he started talking and interacting with others. I told him maybe we should keep some candy bars on hand in case he needs a sugar rush.

We asked Allen (our RN today) how long the break would need to be in between consolidation treatments (if Dr. B decides he has to have a second one). He said it could be anywhere from 28 days to 2-3 months though he said Tanner very well might not have to have another course right now.

The patient next to Tanner was having an IV of some "investigational" medicines and Allen told us that little bag was over $250,000. I asked if the patient's insurance was covering that and he said no, the pharmaceutical company was supplying the meds for the investigation.

In the room next to us, they were treating a "prince" from Lebanon who the nurse told us flies in once or twice a year for tests and treatment. From what I've seen, people come from all over the world to Little Rock for treatment of their Multiple Myeloma. I guess you just never hear of this place unless you know someone with this form of cancer.

On another note, I've found that sometimes people go back on the blog and make comments a day or two after something has been posted so I was scanning through the posts this morning when I noticed there was a comment I hadn't seen before on the entry posted on November 30th. It was from a lady who said that the blog was being circulated in the UK. I had no idea that anyone was reading these other than the family and friends back home but I wanted to be sure and thank this lady for her kind words.

Tomorrow the chemo bag gets disconnected so hopefully things will get a little better. I know that he still has to bottom out, but maybe just being able to get off the DEX will help him feel better!

Thursday, December 3, 2009

It's been a bad steroid day. I crawled into bed with Tanner this morning and was just lying there looking at him and he wanted to know what I was looking at. I told him I was just checking to see if it was "Evil Tanner" or not. That got a small smile from him.

He said, "I just want to go home". I told him I wasn't going to try and say anything to make him feel better because I know there's nothing I can say that will make things any easier for him right now. I just told him I understood that he wants this to all be over but that this is something we just have to get through to ensure that he can have a long healthy life.

The PA said things are progressing as they are supposed to and that we "should" be home by Christmas. Tanner and I both fully expect him to progress through this as he has the previous chemo treatments which would put us home right before Christmas.

He hates taking the DEX (high dose steroids) and they really make him almost angry and aggressive. He has been very silent all day today and said he just wants to be left alone so I've been working at the computer all afternoon.

The PA told us that the younger patients have more problems with the steroids making them aggressive and angry - so at least Tanner's heard that it's not just him. He's a totally different person while he's taking these things. The nurses were even telling him they aren't used to him being so subdued. They all miss their smiling Tanner.

Tomorrow is the last morning he has to take the steroids and he and I are both SO THANKFUL!

Saturday his chemo bag will be disconnected and after that we just wait for his body to bottom out and then recover.

She also asked if this is Tanner's first consolidation and we told her we didn't know if he was going to have to take another one or not. She looked at his file and said as young as Tanner is and aggressively as Dr. Barlogie has been treating him, she bet he would have another one.

The longer treatment goes on the harder being away from home is for Tanner and I both. We just have to keep our eye on the eventual goal of full remission and being home on a maintenance program.

Wednesday, December 2, 2009

Well, I just read Tanner's post for today and I don't want you all to think "What in the world is he doing asking for money!"

He has been getting texts today asking what he wants for Christmas and he told me that since he broke his leg and was diagnosed with cancer the very day before he was offered a job, he has had no way to make and save any money.

It seems, like most teenagers, he's been dreaming of putting some money aside for the day he can leave home. As a mother, I know what most of you are thinking, it's not always as great and easy as these teenagers think it's going to be out on their own, but you know what, he doesn't have much to look forward to right now but day after day of treatment and probably surgery on his right leg when the left leg heals, so I think it's okay that he's trying to think of his future.

So please don't think too badly of him coming on here saying he wants money for Christmas. LOL!

He's in his second day of chemo treatment and the DEX (high dose steroids) are playing havoc on his system right now. His face is really flushed and he's not in the best of moods. He will continue to take all the meds and the chemo through Friday and then it will take a couple of days for the steroids to wear off. Then we wait for his system to bottom out this next week and then he will be on the road to recovery.

After that, we see Dr. B on December 10th and I hope we will find out if he has to have a second round of consolidation chemotherapy. He told me last night if he has to have a second round he's going to ask the doctor if he can just go ahead and take it right now. I told him his body has to recover a bit before he could go through chemo again and he said he wanted to tell him to give it to him as soon as possible. If he can take it again in two weeks instead of a month, then he just wants to get it done.

He also asked me how he was supposed to get a life and hold down a job if he has to come to Little Rock every three months for 2-3 days of testing. I told him we just need to get things stable and in remission and eventually he can find a doctor in Fort Worth or Dallas and can just be maintained at home. Eventually coming to Little Rock will only be once or twice a year.

He's only a seventeen year old boy who has had to deal with a devastating illness and wants to just be allowed to live a life of his choosing for a while...

well... its almost xmas..

Not too many people can say they have just about everything they could possibly want, and i do.. Im very proud to be able to say that.. I want things to be as easy as possible this xmas so this is how im going to do it..

If you want to get me a gift, its fine with me but im not going to say anything or im not going to post what i would want this xmas.. instead im going to say that id like to just be given money.. lol i know what alot of people are thinking. and that is that he doesnt need money but i do.. well its what id prefer this xmas instead of a gift.. but i dont want to hurt anyones feelings about wanting to get me a gift thats why im going to say that money is just as good as a gift to me.. and the main reason i want money this xmas is bc its practically the only way i can get money...

im going to put this money i get this xmas in my savings account that way in the near future when i get back on my feet ill be further ahead than where im at right... my plans of life had been changed when i broke my leg and found that i had cancer.. it post poned everything i was planning which is not too much... i was planning on having saved enough money by the time i turn 18 to be able and move somewere with a good buddy of mine.. his name is tyler i met him while i was attending cross timber academy.. but i never associated with him much out of school bc of one reason that i am upset with myself for doing... which was not associating with him because he simply didnt mess with drugs, and i did so i had a phone call the other day and it was from him. he asked me how id been and he didnt know at all what has happened and the treatment i am undergoing... but he asked me if i wanted to move out together with him.. i told him i wont be able to support myself for a good while and he told me not to worry that if i wanted to really move out with him that he would wait till i get in full remission and till i can stand on my own two feet again.. idk why he wants to move out with me.. i wasnt really a good friend to him if you ask me or at least not out of school... but in school i was a good friend or always allowed him to talk to me and stuff like that.. but he told me that he just remembers how good of partners we always were in the class we had together.. we sat next to one another when we could have partners its was him and i.. so i guess he just thinks im a good guy and a reliable one which i am i think.. but at the moment i cant do anything for myself really except push through this treatment and hurry up and get back to my life... i think sometime after im in full remission and after i have turned 18 and am able to keep myself up and making a income monthly which shouldnt be too hard.. i mean i almost had myself a job right before all this took a toll on my life and has changed it forever.. but anyways i guess im goin to get off here and let everyone read it.. lol.. i love you all so much...

love, tanner

Tuesday, December 1, 2009

Well the internet at home is still out so I came to Barnes and Nobles so that I could check my work email. I've already been here a few hours now and, can you believe it, they don't have any places to plug in your computers in their Starbucks. The laptop eventually lost power so now I'm sitting in my car where I can still get WIFI and can also plug in.

I'm going to keep this short and sweet (rather than the long ramble that I did yesterday) since I need to get some food home to Tanner.

They placed his triple lumen lines yesterday and actually had a harder time than they ever had before. I told him it's probably because he's building scar tissue from all the times they've inserted and removed in the past few months.

Today they hooked him up to his chemo bag and he will carry it for four days. They have scheduled us to go back and see Dr. Barlogie on December 10th and then on December 11th we see Dr. Nicholas. Tanner is going to be beyond upset of Dr. Nicholas doesn't remove the long cast on the 11th. If all goes as it should, we should be home a week to ten days after seeing Dr. B.

He wanted to go to Olive Garden to eat yesterday so he could have a salad since he knows lettuce and fresh vegetables are out of the question after his system starts to decline. After eating - and out of the blue - he asked me what I planned to do with myself after he and Trevor move out. I told him with treatment and possible future surgery, I don'tsee him moving out any time during the next year. He told me he understood that but that it would be happening in the near future and that he was worried about my future and thought I should start "thinking about going out". I asked him if he had any suggestions for a 47 year old whose idea of a good time is a book at home. He told me maybe the bookstore - or Match.com.

He can be quite funny sometimes - though he's quite serious and I guess worries about me as I worry about him.

Anyway, I just got through skyping with my boss (while sitting in my car!) and it's getting late so I guess I should go and grab Tanner some food and head back to the aparatment.

They are supposed to send someone out to fix the internet tomorrow so I hope they will come when I can actually meet them there. I need the internet to be able to work. Barnes and Nobles is not condusive to actually being able to work - and print!