Here we go

Tanner spent the night with Granny Jane and Pop Jerry last night and I'm about to leave and go pick him up.

He seems to be doing well - and liking school so far.  He had a math test on Thursday and told me that he thought he understood it all and did well.  He actually seemed pretty excited. Hopefully, he will continue to do well as the school year proceeds.

I had a talk with him and his new girlfriend (Cearra) one night this last week and expressed to them how very important it is for him to concentrate on school as much as he can so that he can focus on a future career that will support him with his medical condition and the limitations of his bones.

He says he's 19 and has never had a "real relationship" and that "it's time" - I told him right when he's starting college is actually maybe not the "right time" but, hey, what can you do?  You can't control love, now can you?

I just thought it was a good idea to sit them both down and talk to them together about the importance of school - and him taking care of himself.

I had another one of those nights.  I think I might have gotten about two hours sleep and I'm so exhausted, physically, mentally, and emotionally...  Sometimes, I wonder who I am to give Tanner advice... but what do you do?  You're "mother" and you keep talking and you hope some of the things you say sink through... You hope that sometimes - no you hope always - that your children succeed and make better decisions than even their parents.  It's just hard to be 19 - and all that entails - and have cancer too...

Muscle Spasms

It's nearly 2 a.m. and Tanner is soaking in a hot bath.

I came home tonight after being out for a few hours and he had one of those heating packs stuck to his back and he told me that his back is having muscle spasms.

For brief periods of time, I can put aside worries... but they always come back.

My teenage son has cancer and he will ALWAYS, for the rest of his life, have to deal with all that that entails.

A year ago he became addicted to his pain medications so they prescribe for him very little to deal with the pain... But then, what do you do when he hurts?  He's not supposed to take Ibuprofen - and Tylenol is nothing... 

So tonight, he's using heating pads and taking hot baths - and his mom isn't sleeping.

A Clean PET Scan

Last Friday Tanner had a full body PET Scan over in Dallas and it showed that he is still in Full Remission!!

Dr. Berryman said that at this point Tanner should just continue with his maintenance chemo as he's been doing the last year and a half with no changes and we return to Dallas to see him again in December.  He also said that he talked with Dr. Albritten at Cook's Oncology and they are going to start phasing Tanner over to Texas Oncology during the next two months.

Dr. Albritten said they are writing a "Young Adult Protocol" and Tanner is their guinea pig.  She has been talking with him about the importance of reading and signing his own medical forms.  They also discussed clinical trials and that he shouldn't just agree to participate in any that might be presented to him in the future until talking with his doctors and investigating the trials to the fullest.  This is all part of "phasing" their young patients over to adult practices.  They don't want to just release him until they've spent some time discussing with him the importance of being responsible for his own medical care.

He's been attending evening classes at Tarrant County College for two weeks now.  He told Dr. Albritten this week that so far "nothing has scared him yet"...  Last night when I picked him up he said the work has really started and that he has lots of homework that needs to be done before he goes back to classes next week.

I talked with him about realizing that school is going to be a lot of hard work but that if he will just give this his best shot and really apply himself, in two years he can have an Associates Degree and will be able to pursue a career that will afford him a wage where he can become self sufficient and independent.  Something that we all want...

Lisa, the Young Adults Coordinator at Cook's Oncology, and I were talking the other day about how far Tanner has come from where he was a year ago.  I am so very proud of him and the progress he's made.

He and I both have been in what he calls our "mood" for over a week now.  I told him that maybe it has something to do with the fact that we were able to spend a week in paradise in Hawaii and have come back to the reality of our every day lives....  It's an adjustment....

He needs to focus on school, taking over his own medical care, and improving his chances for a successful future.  I need to focus on letting him go and improving my own personal situation.  19 or 49, we are still works in progress and both need to learn to take care of ourselves...

As Beth tells me, "we can't control anyone but ourselves"... It's time to let Tanner start to control the direction of his medical care and future and me to start controlling the path of my own life...

Letting go is sometimes a difficult thing to do, but maybe realizing you never really had control is the hardest of all...

"Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for." - Epicurus

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...