Thursday, July 30, 2009

It turned out to be not such a "light" day after all. Someone from the Myeloma clinic called us while we were waiting on Tanner's scan at 1:00 p.m. and said the doctor wanted to know if we could come on over to the clinic and see him this afternoon. We Font sizeended up being there until 7:00 p.m. and none of us had anything to eat all day except the snacks in my bag and what we could get out of a vending machine.

Dr. Barlogie was a very reassuring physician and he told us that he thought he could "cure" Tanner. He said he has myeloma still in his left leg (where it was broken), his right hip, his sternum, his ribs, his pelvis, his skull - and something is showing in his tonsils that might also be cancer.

We are going in at 9:30 a.m. to have some lab work, then going to have his tonsils biopsied at 11:30 a.m., and then back to see Dr. Barlogie at 1:00 p.m. (though from what I hear you always have to wait at least a couple of hours to get in to see the doctor.

He said Tanner's myeloma is spreading aggressively so they want to start some aggressive chemotherapy right away. It looks like the plan is to start the chemotherapy as soon as possible and see how he does and then they will determine when they will start getting ready for the stem cell transplant. All of this will begin this weekend with no time to go home and gather more clothes.

Tanner has a really large spot on his right thigh and they said it has caused a knot to bulge out of his bone. When you press into that area, you can feel the knot - and all the MRI's, PET scans, and X-rays they have done this week report that area as in danger of "immenent" fracture. The doctor told him he just needs to be careful and stay off that leg as much as possible (hard to do with the other leg being in a full cast) and that they feel like they can completely eradicate that lesion and the bone will be fine.

They told Tanner after a month of treatment, he might get to go home for a few weeks - but we have to wait and see how he's responding to chemotherapy before they make that decision.

Dr. Barlogie was dressed in his biker clothes, boots, and heavy chain necklace and came through the door and took one look at Tanner's mohawk and said "cool"! He seemed very caring and hugged Tanner several times. He was very reassuring and I feel better after seeing him today. I know that Tanner has a long road ahead of him and I'm sure there are going to be some hard days of chemo ahead of him -- but I truly feel that they will be able to take care of all of this for him.

Tanner has his mind set and he's ready for treatment. His attitude is great and he feels very confident after meeting with the doctor today. I guess we are on the road we are going to be traveling for a while now...

Well, we have a "light" day today with just one test - and it's not until 1:00 p.m. so Tanner has an opportunity to sleep in. We've had to get up between 5:00-6:00 a.m. so he's taking advantage of this opportunity to get some sleep.

Of course, as soon as my eyes opened this morning, that was it for me. I couldn't shut my brain down and go back to sleep. I've already gone to WalMart this morning while Tanner was still snoozing and got some of the necessities we are going to need since we didn't plan on being here indefinitely.

Donna and Kirk have both offered to go by my house and pack up some more clothes and stuff for us and bring it to us here in Little Rock this weekend. Our family and friends have been just amazing. Barbara - thanks for what you have done for us this week!

I logged on bright and early this morning and Bruce (my boss/friend) tried immediately to video call me. I answered the call without video and told him there was no way he was seeing me on video at 7:00 a.m.! LOL!! I look bad enough after a day at the hospital, but it's much worse first thing out of bed in the morning...

Bruce is a planner and he's ready to "fix" all of this. They are going to set me up so that I can do most of my job remotely here in Arkansas and once Tanner is on a regime and I can leave him, his step-mom, dad, grandmother, and I can all take turns being with him and I should be able to come home at least two or three days a week and actually go into the office and also check on my house. Bruce and Pat are both going above and beyond what anyone could expect from an employer - and keep telling me they are not just my bosses but are my friends. Tanner is learning a good life lesson from them and has been enjoying skyping with Bruce.

Alicia (a friend I work with) and her daughter-in-law Carla (thank you Carla for the Lance Armstrong book, I'm half way through with it), have found a wonderful new home for our dog Trixie. She sent us a great photo of Trixie all cleaned up and with a beautiful bandana around her neck. Now Tanner doesn't have to worry about Trixie being alone in our back yard and who will take care of her for us while we are away. Thank you Alicia for that peace of mind!

Tanner's step-mom Janet has been here with us all week and his dad flew in Tuesday night after he got some work finished on his job. The dog Tanner is with in the picture in his post is their bulldog Max. We are all here with Tanner and between all of us and some more of our family and friends, I feel confident that we will get Tanner through this.

I know that some people have questions about why they want to do Tanner's treatment here in Little Rock and don't send him home for the stem cell transplants (we love you too Julie!) and I don't know all of it yet since we haven't actually seen the doctor (that happens Friday afternoon) but the only cancer they treat here is myeloma. They give their patients some medication that causes their bones to grow which in turn causes them to start creating new stem cells. They then go in and take out the new "baby" cells and will then melt all the bad cells and replace them with his own new healthy cells. That way they don't have to look for "matches" and Tanner can provide his own marrow for transplantation. They have had wonderful results with this process and we have talked with many of the patients who have underdone this treatment and are leading healthy lives now.

I'm sure I will be able to explain all of this much more clearly after we hear it from the doctor himself Friday.

Tanner checks all of your comments daily and it touches him to know that so many people he doesn't even know are thinking about him and care about what he is going through.

He told me yesterday when all of this is over, he wants to go on a cruise. I told him when he gets well, maybe I can take him as my guest on one of our future PIE trips and he can meet many of you personally. That will give him something to look forward to as he's traveling down this journey we are on.

Wednesday, July 29, 2009

Well, we had a busy day of tests and who knew that the most stressful appointment of the day would be with the social worker?

Dr. Barlogie, the head doctor in charge of the Myeloma Clinic and all the research performed here over the last twenty years, is the doctor who will be seeing us on Friday afternoon. He will give us all the information from the many tests done this week and their recommended treatment plan. His RN took us over to see the social worker today and she told us that she doesn't know for sure what Dr. Barlogie's plans are but that she feels fairly sure that he will want to start treatment on Tanner this Saturday. Tanner asked her if we couldn't go home at least over the weekend to get some clothes and she told him that she didn't think so.

When they arranged the appointments for us to come down this week, they told us they would need us initially five days - and now it looks like they will want us to stay here a minimum of three months - with him only going home for short periods of time even then.

We asked about them setting Tanner up with a treatment plan here and letting us go home and have it implemented in Fort Worth with return trips to Little Rock to be monitored. She said no - not for many months because Dr. Barlogie will want to do two stem cell procedures on Tanner and he will have to stay here without leaving for at least three months. She even went on to say that the time could go on anywhere from six months to a year.

Somehow Tanner seems to think they said he might get to go home for a week in about a month but I remember her as saying he wouldnt be able to go anywhere for three months. This example of us us all remembering conversations differently has resulted in his dad and step mom going tonight to buy a tape recorder.

Anyway, the social worked asked us what our greatest concerns were and I told her, of course, my greatest concern is getting Tanner the treatment he needs and then the next concern was going to be how we were going to survive in Little Rock and not lose everything we've got back home. She talked to us about finding different grants available to cancer patients - and then she talked to me about job opportunities in Arkansas. She asked if some of us could eventually take shifts up here in Arkansas so that not just one of us will have to be here with Tanner all of the time. I told her that I was sure that myself, step-mom, and granny could all take turns staying here but that I just couldn't bring myself to leave Tanner right here at first until I see what treatments are being set up and how he handles them - and I definitely will want to be with him when they do the stem cell treatments. That's just the mom in me.

Tanner is worried about what this will do to our jobs and our lives at home - but I tell him our number one priority is his health. Of course, when I talked with Bruce, he tells me not to worry and that we will work this out and that they will see what they can do to set me up with a "remote" office. I don't know what I would do without my PIE family and at this point, I'm just going to trust that this will all work out.

The social worker has given us paperwork about different grants and we are about to get started with that process. I was also told that Gibson's, the general store that Tanner use to work for, is setting up collection jars in their store in Weatherford. Many of our family and friends have been so generous to us with hotel points, food, funds, and support - I can't even begin to express our gratitude.

At first, all we could worry about was Tanner's health and now the reality of insurance and where and how we are going to live has also been introduced into the picture. I have an aunt who lives here in Benton, about thirty minutes from the hospital, and she has offered me the use of her home until we see what housing we qualify for near the hospital. I have to trust that this will all work out. If there's one thing I've learned over they years, "things" seem to work out. We just have to focus on the goal of getting Tanner well. He's my sweet baby boy.

Tuesday, July 28, 2009

Thank you all for your love.

I cant hardly read all these comments without a tear dropping from my eyes. It gives me so much spirit to hear that people i dont even know are willing to share their love and gratitude with me. I appreciate the support from everyone, even my mother is appreciating you all. Which makes me feel great on the inside. LOL I try to keep a very high spirit about all of this so that way i will keep myself, my mom and everyone else who is worrying about me. my mother says im the only thing keeping her strong which is secretly why I keep a high spirit, so that she wont feel down or sad ha ha. so they are waiting on me to get off here to go get some food lol mainly a fast food burger since i havent eaten anything except a salad and a nasty hospital sandwhich in the last 20 hours so yes im hungry... once again thank you all for your support...

Tanner Walker peace out!!!

We are in the middle of our second day of testing and had a break to come back to the hotel so Tanner could take a shower. He said these one legged showers are exhausting!

He was worn out from the long day yesterday and could hardley keep his eyes open when we got back to the hotel. We attended a new patient orientation that was actually quite encouraging. They showed a slide of someone who had multiple myeloma in most of the bones throughout the body - to the point you would think it would be hopeless - and then they showed a slide of him after two weeks of treatment and nearly all of the myeloma was gone. That made me feel much better because I was worried about Tanner having lesions in multiple areas.

They did a PET scan this morning with dye which is attracted to areas of cancer and will "light up" on the films. We will go back this afternoon and do a full body MRI. He's hoping for a break in all of the tests so we can do some sightseeing in Arkansas.
Through this all, he has kept up his spirit and he's the one who is keeping me strong!

I want to thank you all for your comments. It's something to look forward to every day when i I log on and it helps to know how much everyone cares.

Monday, July 27, 2009

Well, we made it to Little Rock last night and got settled into the hotel.

We went to the Myeloma Clinic bright and early this morning and no one seems to have any problems locating Tanner in the waiting room since it seems that all the other patients are over the age of sixty. Everywhere we go they keep telling Tanner he's the youngest patient they have worked with. He's getting lots of attention and care from everyone we meet. They did another bone marrow aspiration today and Tanner did really well; it was his mom that shed the tears (since I was actually in the room this time and saw what they were doing).

They had to go in three times to take marrow and bone so that they could have some for his diagnosis and extra for research. He was doing lots of deep breathing - but I was really proud of how strong he was.

Tanner's step-mom Janet is here with us and it's been wonderful to have the help, support and extra set of ears. Sometime's all of this information is more than one set of ears can absorb.

We went to lunch today and started talking about all the support Tanner has been receiving -even from people he hasn't even met yet- and he started crying. I can't tell you how much all of your support has meant to us.

We are about to head out to New Patient Orientation so I will be back to update again tomorrow.

Sunday, July 26, 2009

It's 5:00 a.m. and I just can't sleep. I know we have a long trip today and I was hoping to get in a full eight hours of rest --- but I just can't sleep. We are going this morning to tell my 21 year old son Trevor about the diagnosis and Tanner told me he wants to tell him himself. After our family meeting, we will get on the road to Arkansas. I know it will be an emotional time before we start our trip today.

Many of our family and friends have come over this weekend and brought plenty of snacks, books, and other essentials for us to take with us - and Kelsey's (Trevor's girlfriend) parents gave us three nights at a hotel near the hospital. I can't even begin to tell you what my family at the PIE office here in Fort Worth have done for us already as we start this journey. There are no words adequate to express our appreciation for all the love and support we have been receiving. We have been blessed with the best of family and friends.

Saturday, July 25, 2009

We went to Cook Children's Hospital today for an MRI of Tanner's hip and pelvis area. The largest spot that the doctors have found in Tanner's bones so far is in the bone below his right hip. This is bad because myeloma in the shin of the other leg caused it to fracture resulting in surgery and the fact that he is in a full leg cast. Now he has to be careful that he doesn't fracture the "good" leg in the hip area. The surgeon requested an MRI so that she can see the extent of the myeloma in that area. We've gotten a wheelchair for use when Tanner has to make any extended walks to lessen the chance of any further fractures. He's been in good spirits today and he and his cousin Jesse actually pulled out the hair color (temporary - thank goodness) and fixed up his mohawk!

Friday, July 24, 2009

We are getting ready to head to Little Rock, Arkansas Sunday so that we can be at the hospital bright and early Monday morning. They have scheduled Tanner for five days of tests so I'm sure he's going to have a looonnnggg week ahead of him. This has been a stressful and shocking week for the whole family but we are ready now to begin the process of finding a treatment for Tanner's multiple myeloma. I will keep updating as things progress. Thank you all for keeping us in your thoughts and prayers.