A Week in Paradise

Tanner and I had a week in Paradise!

His Make a Wish trip to Hawaii was all he could have dreamed of… 

When we arrived they shuttled us over to Avis Car Rental and the girl told us that we were supposed to have a full sized vehicle but that they were all out.  I told her that I drove a Honda Fit so a small car was just fine with me!  Tanner piped up and said “How about one of those Mustangs I saw on the parking lot”?   They said “Sure! How about a convertible”?   So… we ended up with a red Mustang convertible!  My dream car!!  LOL! 

Tanner told me he asked for it because I’ve always teased the boys that when they were grown and I was on my own I was going to have a Mustang Convertible (with car seats in the back for my grandkids)!  On our free day, we put the top down and toured one beautiful beach after another on the North Shore.  It was heaven!!

Our hotel was right on the beach with an ocean front view and I started and ended each day on our balcony taking in the breathtaking sight of the beach below!

We had a helicopter tour of the island where we got to see volcanoes, waterfalls, pineapple plantations, Pearl Harbor, and Gilligan’s Island (LOL)! 

We took a submarine ride and saw lots of fish, man-made reefs, a sunken ship, and a downed airplane.

We went out on a catamaran and Tanner made friends that he socialized with throughout our time in Hawaii.  He’s a much more social soul than his mom and, as I knew he would, he made friends right away and they took him and exposed him to parts of downtown Honolulu that he wouldn’t have ever found on his own!

On our last night in Hawaii, we attended a luau in Paradise Cove and they made sure Tanner felt special the whole night!  They surrounded him with beautiful girls (in coconut bathing suits) and took a picture (which they gave Tanner complimentary) and had reserved seating for him right up front and center of the stage. 

We met a young girl and her mom who were on vacation from Canada and she bonded with Tanner right away and they spent the majority of the night talking with each other.  It was a perfect way to spend our last night in Honolulu!!

I’ve been asked more than once, since we returned, what my favorite part of the trip was and I have to say simply spending time on the beach...  lying on a beach blanket occasionally reading a book - but mostly just watching the beauty of the waves breaking against the shore…  It was, truly, paradise!

I can’t say enough about the Make a Wish Foundation!  They give these children (and their families) a once in a lifetime experience and memories that will last forever!!

A smile happens in a flash, but its memory can last a lifetime…

A Contributing Post

The following post is a contriubtion from David Haas, a fellow blogger who found "Tanner's Journey" and asked if I would mind sharing his article.  As I've come to realize during the last two years, though I personally don't have cancer, I have discovered that exercise helps me tremendously in dealing with the stress and worry of my son's disease.  I've never felt better than when I exercise daily...

Fitness Helps Patients in the Fight Against Cancer

A diagnosis of any type of cancer including breast cancer, skin cancer, colon cancer or even a rare disease like mesothelioma is often shattering. Fear, depression, hopelessness, and anxiety are common and understandable responses with any cancer diagnosis.  One effective strategy for keeping energy levels high to fight the disease is to get regular exercise before, during, and after treatment.

What Can Fitness and Exercise Do for Cancer Patients?

There are several ways in which regular exercise and physical fitness help cancer patients to cope and fight back. For one, exercise focuses the patient’s mind on the physical activity, instead of on the on the disease. In this way it offers a respite from the anxiety that is normal any type of prognosis.

Exercise also gives the patient a feeling of control over what is happening to his or her body, which is something patients often lack when facing cancer.

Exercise has been proven to help fight depression and improve mood. This allows the patient to face the diagnosis with greater equanimity.

Exercise promotes better blood circulation to improve energy and healing and to deliver the body’s own disease fighting agents as well as chemotherapy drugs to all parts of the body where they are needed.

When it is performed with others, exercise can prevent loneliness. It can promote bonding when done with a spouse or family member, and friendship when done with a group.

Fitness gives patients an overall sense of well-being and can significantly improve mental attitude, physical strength, and quality of life during the difficult battle with the disease.

What Kinds of Exercise Are Good for Cancer Patients? 

Walking, jogging, swimming, bike riding, and other cardiovascular exercises are great ways to improve stamina, muscle tone, and circulation, while increasing energy and improving the body’s immune response.

Doing resistance exercises with weights, either at home or at the gym, has an even greater effect on muscle strength.

Yoga and Pilates are two kinds of exercise that are especially helpful to cancer patients working to stay fit, because they engage the mind and the body while improving flexibility and muscle tone, promoting calmness and relaxation.

By improving energy levels and the functioning of the immune system, along with promoting a positive mental outlook, physical fitness throughout the treatment process and recovery can give the cancer patient a boost in the fight against this devastating disease.

By: David Haas Writer of the Haas Blaag

A Stem Cell Study

When we first visited with Dr. Berryman in Dallas, he discussed with us that he knew Dr. Barlogie exclusively believes in autologous stem cell transplants (where you implant the patient's own stem cells back into their body after aggressive chemotherapy) - but that there were many different schools of thought on that subject.

He expanded further on the subject by saying that while he understood if you were transplanting your own stem cells, you avoid the possibility of rejection - you were also using those same "flawed" stem cells that contracted cancer in the first place.

He said that we needed to consider what would we do if the worst case scenario occured and Tanner was ever to relapse?  Wouldn't we want to do something new?  If the treatment he had already received had reached a point to allow relapse, wouldn't we want to do something completely different?  Something that might assure a longer remission period?  For that reason, he wants to "match" Tanner for donor stem cells just to "cover all the bases" if the unforseen ever happens - and is hoping that his brother, Trevor, will be a perfect match.

His reasoning made sense to me and the other day I was reading an Abstract for a study that was published in July 2011 regarding "Tandem autologous/reduced-intensity conditioning allogenic stem-cell transplantation versus autologous transplantation in myeloma: long-term follow-up".

In this study they compared the results of autologous stem-cell transplantation (your own stem cells) followed by a reduced-intensity matched sibling donor allogeneic (sibling donor) transplant to "auto" only in previously untreated multiple myeloma patients.

In all, 357 patients with myeloma were enrolled from 2001 to 2005 up to age 69 (there just aren't many MM patients in Tanner's age range).  The results achieved showed progression-free survival at 60 months was significantly better with "auto-allo" than with "allo" alone (25% v 18%), as was the risk of death and of relapse in the long term (P = .047 and P = .003, respectively).  Overall survival at 60 months was 65% versus 58%, and relapse incidence was 49% versus 78%. Complete remission rates were 51% and 41%, respectively.  The conclusion being that in patients with previously untreated multiple myeloma, long-term outcome with respect to progression-free survival, overall survival, and relapse rate is superior after "auto-allo" (transplanting your own stem cells - followed by transplanting a sibling's matched stem cells) compared with "auto" (your own stem cells) only. 

I guess what all of this boils down to, for me, is that I am reassured in Dr. Berryman's reasoning...  This published study seems to back up his thoughts on the idea of following up on an "auto" stem-cell transplant with an "allo" implant increases the survival rate in MM patients.

It was a very big decision to move the bulk of Tanner's care from Arkansas to the Dallas - Fort Worth area and it's good to know that Dr. Berryman is on the "cutting edge" of multiple myeolma treatment and is knowlegeable about advancements that are being made every day.

Tanner's next PET Scan is scheduled for September 2nd followed up by an appointment with Dr. Berryman that same day to read the results.  He and I both are anxious to find out the results of the test - and to see where his treatment will go from here.

Another Series Ending

Barbara, Beth, and Tanner

I wrote to Dr. Barlogie and explained to him about Tanner's hesitancy in moving to Arkansas away from everything and everyone he knows - and that his college classes start at the end of August.  I explained to him that we have visited with Dr. Berryman at the Sammons Cancer Center in Dallas and also that Tanner has had to two surgeries on his legs.

He replied "What a great story! I will be glad to work with Bob in the future".



We went back and saw Dr. Berryman (Bob) on Friday and told him what Dr. Barlogie said.  He asked if that meant we would be going back to Little Rock and having the tests done and him assist with the care here closer to home.  I told him that since Tanner is about to start college - and since the insurance won't cover the tests in Arkansas - we feel that he needs to go ahead and just take over and send copies to Dr. Barlogie of everything that is being done in regards to Tanner's treatment.



He said that there are many different schools of thought on how long maintenance chemo should last.  He said some doctors only prescribe the maintenance treatment 2-3 years, other's treat up to 5 years, while other physicians believe you should keep patients on maintenance chemo until it seems to no longer be working.  He said that Multiple Myeloma is predisposed for relapse (scary words to hear) and the goal is to delay that occurence for as many years as you can.



He said that with Tanner's young age we are in "uncharted territory" and that he was going to call Dr. Barlogie and get some insight into what he was thinking in regards to Tanner's long range treatment plans.

In the meantime, he wants to move Tanner's weekly chemo treatments to Texas Oncology in Fort Worth since that's the system he practices in. 



While Tanner and I understand the need to move his treatment, it is going to be so very sad to leave the care of Dr. Albritton and all the people at Cook's Oncology and Hematology Department.  They have become our friends these last two years...



So, as this series of treatments come to an end here in August and Tanner goes through his next series of restaging tests, his care is going to be phased over to Dr. Berryman in Dallas and Dr. Rashid Dean at Texas Oncology in Fort Worth.  I just hope that everything works well with Dr. Berryman and Dr. Barlogie working together for Tanner's care.



Change is ever constant...

A Family Weekend

Tanner comes home this weekend and we are going to try and have a "family weekend" with his brother.  We'll see how much time we actually all spend together (you know that saying about the "best laid plans") but I do know that the plan is for us to all go and see the last Harry Potter movie.  We've seen the whole series together since they were very young boys, so I guess we'll see this last one together too.  I told them I've read the book and can just tell them how it ends, but they say "no way"!

Tonight, I think they are going to go night fishing with their dad.  It's way too hot here in Texas to do much outside during the day right now...

I took Tanner to his chemo appointment on Wednesday and he was walking with only one crutch but his left leg was still swollen and was hurting.  He said that he thought he was going to have to get the other crutch back out for a while.  I'm still not use to seeing him without his leg brace!!

Surgery on the femur is usually more painful than on the tibia, but the fact that the left leg was broken for two years and had a bone graft made this last procedure a more invasive surgery - and it's just taking him a while longer to recover.  He goes to see the Orthopedic Surgeon in Dallas on Tuesday for his follow up appointment, Wedensday is chemo in Fort Worth, and then Friday he goes back to Dallas to see Dr. Berryman.  It's going to be a busy week!

After his chemo appointment on Wednesday at Cook's Oncology Department, we went over to the Center for Cancer and Blood Disorders and met with Terry Purdom, a man who was diagnosed with Multiple Myeloma in 2004 (http://web.me.com/tpurdom/Site/Home/Home.html). 

Shirley Casey (our friend from OK who also has MM) hooked us up with Terry and we all decided it would be a good idea for he and Tanner to meet.

Tanner was very impressed with Terry and while we were there, the doctor came out and met with us also.  He said that he was in no way a "specialist" in Multiple Myeloma, like Dr. Barlogie or Dr. Berryman, but that he would be more than willing to treat Tanner here locally under the supervision of either of the other doctors. 

They gave us a tour of the facility and Monday evening, Tanner plans to attend a seminar that is to be hosted by Terry -  "I Can Cope, Keeping Well In Mind and Body".

I'm so glad Tanner had an opportunity to meet Terry and I'm glad Shirley "introduced" us - from all the way up in Oklahoma (by way of Facebook)!

Slower Than the Hip



Tanner's Painting for New Ward at Cooks

 Tanner is doing well - though the recovery from surgery on the left tibia is taking longer than the recovery on the right femur.  I guess it's because the bone has been broken so long and the surgery to place the rod in the left leg was more invasive than the hip.

He's been staying with his Granny and Grandfather again this week and yesterday he texted me a photo of himself on their recumbent bike.  He said that riding the bike seems to be helping him and that he's been able to walk around the house a little bit without his crutches (he was off the crutches when they put the rod in his femur within three days).  I'm sure it will probably be okay by the time his college classes start on August 29th.

I received an email from Make A Wish and they wanted to schedule his trip to Hawaii from August 20th - August 27th but I had to email her back and ask about the time of the flight on the 20th since college orientation is that morning until noon.  I guess we'll see what they can work out but I think he's running out of time to make the trip work out since classes will soon start.

He's spending next week with his dad so I'll have another week of quiet before he comes home and we start getting ready for school (and possibly Hawaii - LOL).  The first week of August he has three doctor's appointments and none of them could work out their schedules so that we could see multiple physicians on the same day.  So, we'll make a trip to Dallas early in the week to see the orthopedic surgeon, then mid-week he will have his chemo in Fort Worth, and then later in the week we will head back to Dallas to see Dr. Berryman (the new Oncologist).  Busy- busy with lots to do before he settles down to school four days a week!

I actually received an email this week from D'Juanna at MIRT asking how Tanner and I were doing and have been considering how to reply.  The thing is, when Bonnie (Dr. Barlogie's right hand assistant) emailed months ago asking if she needed to be looking for a job for me, I emailed her back about my concerns regarding Tanner and I living in Arkansas, practically on our own, and that I was considering finding a doctor here locally.  I never heard back from her so I've basically just stopped communicating with them; they don't even know about Tanner's recent surgeries.

I guess I'm going to go ahead and email Dr. Barlogie and let him know what is going on and leave the ball in his court.  When we were last there in Little Rock, he made it pretty clear to us that he wasn't willing to work with Tanner having his tests here in Texas and gave us the ultimatum of moving to Arkansas before he was scheduled to return for his follow up tests in August.

He basically put it that if we wanted Tanner to have the best chance at a long life, we needed to live in Arkansas.  The thing is, Tanner doesn't want to live the rest of his life in Arkansas - and though I'm his mom and my instinct is to always take over and make all of his decisions (even his medical decisions), this is his life, his disease, and his decision.

We talked to Tanner's counselor at the Oncology Department at Cook's Hospital and she made some calls and the lady at the Leukemia and Lymphoma Society said there are lots of places other than MIRT where you can get quality Multiple Myeloma care. 


Tanner and Dr. Albritton



When we visited with Dr. Berryman at Baylor Dallas, he seemed to know all about the kind of treatment that Dr. Barlogie had given Tanner.  He said that he wouldn't change any of Tanner's regimen and that he would be willing to work with Dr. Barlogie.  I just don't know if Dr. Barlogie would be willing to work with Dr. Berryman.  He just wants Tanner in Little Rock...

So...  I'll email Dr. B this weekend and will let him know everything that has been happening and we'll see how it goes from there...

Internal Brace

Tanner had surgery yesterday to place the rod in his left tibia and everything went off without a hitch.  The surgeon said he had to make an extra incision on top of the leg because of the bone graft that was performed two years ago but that the rod went into place without too many difficulties.

The pain seems to be a little more intense than when they put the rod in the hip but, all in all, Tanner has been in good spirits since we made it to his hospital room.  I can vouch for the fact that his appetite hasn't been effected at all.  He had part of a turkey sandwich, half of a club panini, roast, broccoli, potatoes, and spice cake between the time he made it to his room around 4 p.m. yesterday and bedtime last night!

The nurse practitioner came by this morning and has already written orders that he can go home today as soon as physical therapy comes by and gets him out of bed to walk.  She said he can put as much weight on the leg as he can bear and that he doesn't have to wear the leg brace anymore!  He has an internal brace now!!

Once we get through these initial few days of the worst of the pain, he should be set to get on with his life!! 

College starts August 29th!!