Merry Christmas 2010

Merry Christmas..

We had Beckett and Kelsey over for Christmas Eve and you could see the joy in Beckett's eyes.

Our Christmas Day wasn't what we expected  but it's the second Christmas that Tanner has been with me since he was diagnosed with cancer so that's a blessed Christmas I would say.

I told my boys that families come in all sizes.  Our's may be a small family, but we have each other.

I grilled chicken for lunch and then the boys and I went to see the new Harry Potter movie.  They seemed to like it and since I've seen all the Harry Potter movies with my sons since the series started (and read the books) I enjoyed it too.

We have a Christmas event today at Granny Janes and Pop Jerry's house and then we can start getting ready to put 2010 behind us and focusing on 2011 and all the changes that are coming. Some I'm going to struggle with accepting and some I'm hoping for with all my heart.

This Christmas Tanner has remained in remission for a year.  Like I said, that's the biggest blessing of them all...

Change

If you knew that you would die today,
If you saw the face of God and Love,
Would you change? Would you change?

If you knew that love can break your heart,
If you're down so low you cannot fall,
Would you change? Would you change?

How bad, how good does it need to get?
How many losses, how much regret?
What chain reaction would cause an effect?
Makes you turn around, makes you try to explain,
Makes you forgive and forget, makes you change?

If you knew that you would be alone,
Knowing right and being wrong,
Would you change? Would you change?

If you knew that you had found a truth,
That brings up pain that can't be soothed,
Would you change? Would you change?

How bad, how good does it need to get?
How many losses, how much regret?
What chain reaction would cause an effect?
Makes you turn around, makes you try to explain,
Makes you forgive and forget, makes you change?

Are you so upright you can't be bent?
If it comes to blows are you sure you won't be crawling?
If it's not for the good, why risk falling?

If everything you think you know,
Makes your life unbearable,
Would you change? Would you change?

If you've broken every rule and vow
And hard times come to bring you down,
Would you change? Would you change?

If you knew that you would die today,
If you saw the face of God and Love,
Would you change? Would you change?

Fragility



A cold day with Beth



 Tanner is having a hard time shaking the cold that he picked up over Thanksgiving.  He had a culture taken at last week's chemo appointment and the doctor told him that it was viral but he still has a bad cough and lots of chest congestion.

She told him that he needs to drink lots of fluids, stay in out of the cold, and get plenty of rest.  I'm trying to get him to drink more water and not turn to the sodas so much.  As for the "plenty of rest", he still wants to stay up all night and sleep half of the day away.  I wish I could get him back to a more "normal" routine.  It just seems that teenagers prefer to stay up all night and then sleep late the next day. 

My niece, Beth, flew in last night and her dad and I picked her up from the airport and we went straight to Aunt Gerry's house for Sunday dinner.  She will be here with me until after Christmas. 

I didn't get to go to Montana and see her this past Fall as I planned to do so I hadn't seen her since June when she last came home for a short break.  I'm so glad she is here!  I'm ready for some quality time with my girl!!

The reporter from the Fort Worth Star Telegram that wrote the story about Tanner last Christmas emailed me last week and said that they are going to run a follow up article about Tanner over the holidays.  I guess something along the lines of how he is doing a year later. I'm hoping that he will let me know when the article will run so that I will be sure and not miss it.

One of my favorite agents was just diagnosed with lung cancer and found out that it has spread to his liver, bones, and brain.  They are going to do radiation on his brain Wednesday and then will start chemotherapy the Monday after Christmas.

He wasn't feeling bad at all and the only indication he had that something was wrong is that he was losing weight and his shoulder started hurting (he thought he just pulled a muscle moving a house plant).  His daughter is a nurse and is doing research looking for doctors who specialize in the type of rare lung cancer that Chet was diagnosed with.  I hope that they find someone as brilliant as we did when we found Dr. Barlogie.



Tanner and Kelson flying kite



It still hits me sometimes, how you can be going along in your everday routine not knowing anything is wrong, and then out of the blue comes a diagnosis like cancer and you come face to face with just how very fragile life is.

I have a photo of Tanner and his cousin Kelson (who died of cancer not long before Tanner was diagnosed) on my refrigerator taken at Jesse and Rebecca's wedding.  I was looking at it the other day and thought about how there was Tanner sitting with his cousin who had cancer and we didn't know that Tanner too had cancer spreading through his body.

We need to all enjoy each day, let the petty stuff go, and treasure our loved ones because none of us know what tomorrow is going to bring.

"You never leave someone behind, you take a part of them with you and leave a part of yourself behind..."

The end of a season

I probably shouldn't even attempt to blog right now. 

I've been up since 4 a.m. this morning and it's now 12:32 a.m.  I am so exhausted, but as they say, "There's no rest for the wicked"...

Tanner went to his chemo appointment this past Wednesday and they ended up having to give him a breathing treatment.  He just can't seem to shake the cold that he caught on Thanksgiving.  Since the treatment, he does seem a littler better these past couple of days.

Of course, the illness made the rounds through this family with first Tanner getting sick, then Trevor and then, of course, myself.  I ended up missing 2-1/2 days of work this week, but on the other hand, I was brought a care package of  flowers (daisies - my favorite) and soup.  It's the small things that sometimes touch your heart the most.

I'm feeling quite a bit better physically today.  I was out first thing this morning and just about finished my Christmas shopping, went to the office and worked for a while and made up some of the time I missed while ill this week, and then spent some time with my family (loved the "new" drink Jess).

Christmas is fast approaching.  I know it's the "joyous" time of year but since my mom, dad, two brothers, and grandmother have all passed; I usually have a hard time around the holidays. 

I'm going to try and make Christmas special this season where we can celebrate Tanner having maintained remission for a year.  I need to stop wallowing in my own self pity and enjoy the simple fact that he continues to hold cancer at bay.

Won't it be interesting to see what's in store for the coming year?  Hahahaha, (sometimes I have to laugh or I will cry).

Anyway, I just wanted to give an update.  I guess it's time to try and get some sleep. 

"Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?"  - Robert Frost

Thanksgiving Wknd

Thanksgiving has come and gone.  Some of it was great; some not so great.

I laughed some and I cried some.  The story of my life lately...

Tanner woke up with a very sore throat on Thanksgiving and decided he just couldn't go anywhere.  He and Trevor stayed at the house and I went to my cousin Kathy's for lunch (so much food!). Then later, went to my cousin Jesse's house (at the sweet request of little Eva) and watched the Cowboy's game and had breakfast for dinner. 

It was a really nice Thanksgiving and I brought home plates of food and desserts for Tanner and Trevor.

I was supposed to go out to the lakehouse with a few of my cousins for the weekend but the next morning Tanner still wasn't feeling very well.  I decided to take him to the Minor Emergency Center in Mansfield just to check things out.  The doctor said the throat was red but they did a strep test and it came back negative.  He prescribed some antibiotics just to be sure and cover any possible infections and Tanner told me to go on to the lake.

It was a near perfect weekend on lake Palo Pinto with beautiful weather.  We sat on the deck, talked, read, took some boat rides, the guys fished, and Kathy and I had a few margaritas and danced to Lynyrd Skynyrd.

Tanner went to the Oncologist on Tuesday and his throat seemed to be all better but they found that his Vitamin D level is low so they are going to start giving it to him at his weekly doctor appointments.  I would think this can only be helpful in mending his broken leg...

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” - Lance Armstrong

Happy Thanksgiving - 2010

Happy Thanksgiving.

The boys are gone this evening and I've made the broccoli salad and the no bake cookies.  I've got the plates, cups, forks, and napkins all ready to go.  Everthing is ready for the big meal tomorrow and I've taken my Tyelnol P.M. and am waiting to crash.

Tanner is at a concert with his girlfriend and her dad.  He seems to be doing really well lately.  Of course, I worry about him at a concert on his crutches but when I said something to him he said that he could sit and things would be fine.  I hope so.

I was going stir crazy at the house tonight.  I couldn't settle down to read or watch a movie so I went out for a drive.  Let's just say it didn't make things any better.

My heart is aching at this moment and I'm just worn out from my internal turmoil.  I've been thinking about Thanksgiving and what all I have to be thankful for.  It seems that, no matter how I might moan here on the blog (so sorry), I do have a lot to be thankful for:

In December Tanner will have been in remission for a year.  He tolerates his maintenance chemo well and seems to be doing great in his personal life lately.  Thankful?  Thankful doesn't describe the depth of my feelings for this fact...

Trevor has been doing well lately also and has a possible job opportunity and is supposed to call the man back next week after the holidays to "get the ball rolling".  My grandson, Beckett, turned two today and is a sweetheart.  I haven't seen my granddaughter Kayleigh in a while but she turns three in December.  She too is a sweetheart and I hope to see her soon.  I have wonderful friends; Donna (she's been with me through it all), Sandy (who remains a true friend no matter how much time passes between visits), and Kelsey (a wonderful mother to my grandson who has become an essential friend to me) just to name a few and their wonderful families whom I've also grown close to over these many years.

I'm thankful for my brother Terry and his wife Cathy and my nephews Dewane and Myles.  I'm grateful for my niece TD and for all of my great nieces and nephews.  Though I might not see them often, I love them all.

I'm thankful for my Uncle Little Boy and his wife Suzy, my Aunt Onvie, and all my cousins (even though I don't get to see them very often anymore) and I'm so thankful for my Aunt Tincey and her kids and grandkids in Arkanas.  They open their home to us every time we return for Tanner's tests and always make us feel so at home.

I'm thankful for MIRT and Dr. Barlogie for taking such good care of Tanner this last year and working so hard to save his life.  Just writing this sentence is so inadequate.  There are no words to describe my thankfulness for Dr. Barlogie and the staff at UAMS.

I'm thankful for Shirley, Tom, Harris, Anastasia, John, and Lauren who all became very special friends while we spent those long six months in Little Rock while Tanner, Harris, Shirley, and John underwent their treatment.  You can't get through those times without friends like these.

I'm thankful for my boy's grandmother Jane and grandfather Jerry for loving us so and always being there for us.  I'm thankful for their Dad, stepmother, and grandfather for loving the boys no matter what.

I'm thankful for my job and the people I work with. Pat, Bruce, Alicia, and all my agents - again there are just no words adequate to express my appreciation for all you've done for me and Tanner this last year.

I'm thankful to Traci and her family and also Big Granny and Aunt Judy - and all the family on that side who have supported Tanner and I this last year.

I've saved them for last...  Probably because they are so very essential to me and my survival.  I am so thankful to my Aunt Gerry and her kids Kathy, Kirk, Kevin, Joan, Bobby and Diana.  They took me in over twelve years ago when my life drastically changed and have taken care of me and my boys ever since.  I'm thankful also for all their kids who have become like my own, Jesse, Rebecca, Iris, Eva, Kelson, Brian, Linda, Brennan, Stephen, and Beth (the daughter of my heart).  I love them all...

I'm thankful that, though time doesn't erase, it does heal...

So, Happy Thanksgiving to all of you...

"All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another."

Someone there for me

I had a really rough night - and a pretty rough day.

I would say that I had maybe three hours of restless sleep last night.  I find that my mind goes round and round and I just can't shut it down.

Then I went to work this morning and the tears just started flowing.  After an hour or so, I got it back together and the rest of the work day turned out much better.

I came home from work around 4:30 p.m. and Tanner and I met with the wish granters from Make a Wish.  They had asked him to make two wishes.  The first wish being the one he would really want to do and then a second choice. 

His first choice was to go to one of the small islands of Hawaii and his second choice was Key West, Florida.

Kim (the lady from Make a Wish) asked him what kind of physical limitations he might have (since he's still in a brace and uses a crutch) and then asked him if he would like to go on a helicopter tour of the island in Hawaii.  He was really excited by the idea.  Of course, I was sitting there thinking "helicopter??". 

He told them he had done research online and if Key West was the wish granted, he would like to do a jet sky tour - and he had the information to give them on the service that provides the tours.

I hope that he gets granted one of his wishes.  It would be such a wonderful experience for him.  The wish granters that were here tonight told him it would be a vacation of his dreams; that the Make a Wish foundation goes over the top to make sure the wish is above and beyond anything you could imagine.  It would be something I would never be able to give him myself.

The other side of me just becomes very emotional that he has a disease that qualifies him for something like Make a Wish.  You would think after more than a year of this, I would not still have so many of these moments where I struggle so.

After they all left, I just sat on the couch staring into space for a long time and Trevor asked me what I was doing.  I told him I was thinking and that sometimes I just struggle.  He told me to always remember it could be worse.

Surprising as it may sound, I have issues in my own personal life that, in conjunction with Tanner's illness, overwhelm me sometimes.  Lately, I seem to have a lot of these issues and I find I can't sleep and getting through the days become a struggle.

I've been thinking about going back to the doctor and asking to be put back on anti-depressants.  I guess we'll see if I pull out of this on my own.  I really hate to go back on medication but I've got to admit some of these days have been really, really, hard.

Trevor went out for a friend's birthday and Tanner went to his girlfriend's house so I went for a long walk and ended up spending a little while this evening venting with Kirk.

Thank you Kirk, for all you've done for me and my family.

Living with hope

Things have been really quiet in regards to Tanner, his illness, and his treatment lately.

After the year we have had, that's a good thing!

We had an agent meeting for my work this past weekend that ran through Tuesday so Tanner spent some time with his dad and step-mom.  It's easier for me when I have something busy to do like the meeting where I'm going to be gone until late at night for days in a row to know that he's somewhere safe where I can count on not having to worry about him.

I know he's 18 now, but what does a mother do? It's our job to worry...  I think I worry about him more now at 18 than I did at 8. LOL!

His treatment has been going without any complications lately.  He goes back to the doctor this Friday at 1 p.m. and I need to let them know that he needs to get in and out as quickly as possible.  We have a couple coming to our home at 4:30 on Friday from the Make A Wish Foundation to talk to him about his wish.

I ask myself why this wonderful opportunity for Tanner to have a wish granted makes me feel like crying.  It's just that I never in my wildest dreams ever imagined that he would be in a position to ever be granted anything from a foundation like Make A Wish.  I never imagined I would have a son with cancer.

I was driving in to work this morning and heard that there's only 37 days until Christmas and then when I got here, I received a message from my cousin asking about Thanksgiving.  It's just surreal.  The year has gone so quickly.  I've gone through more emotional upheaval in the last year than I have in my whole life (and that's saying a lot).

Tanner will have maintained remission for one year in December.  We've come a long way from that horrible day last year when we first received the news.  At least now we are living each day with hope.

Going Okay

I took Tanner to his weekly doctor's appointment this morning and Dr. Albritton said that everything looks really good and that he is doing great.

Since they've reduced the steroids (and since Tanner has started getting more rest and taking better care of himself) he hasn't been having any problems with nausea or stomach acid and he looks so much better.

Last week he went out with a group of teenagers from Cooks.  They were supposed to go to Frightfest at Six Flags but since it started raining, they went to downtown Fort Worth and saw a movie and went out for ice cream. 

He said he had a good time but I think the majority of teenagers were younger than him.  He's at this point where he's younger than all the patients going through treatment for Multiple Myeloma in Arkansas but older than most of the kids having treatment at Cooks.

I go back and forth about whether or not we should move him to an adult practice.  They just have his treatment down so well at Cooks, I hate to disrupt the "system".  I guess we'll give it a while longer this year and then it will probably be best to move to a doctor that treats adults.  He's usually always the oldest teenager at his appointments every week and I'm sure the closer he gets to 19, the more he'll be ready to move away from the Pediatric practice.

Dr. Albritton asked him today to consider "designing" a website for their practice targeted at teenagers.  I think it's something he should consider and that we should look further into.  He's always been good at computers and this would give him something productive and helpful to focus on for a while.

I stood in the doorway and watched as they pushed his chemo meds today and I had one of those surreal moments when it hit me again that my baby has cancer.  This flush and tingle spreads throughout my body.  I ask myself how this could have happened and I know that all the other parents sitting in that waiting room must have those moments all the time too.

He's going to spend some time with his grandfather in Abilene and is leaving Thursday.  It will be good for them to spend some time together.

Anyway, I've been awake since 2:00 a.m. and am pretty tired and drained so I think I will wrap it up for this entry.

Counseling

I took Tanner yesterday to have his brace refitted.  After seven or so months in the same brace (which has been in several swimming pools, lakes, and rivers this summer), it was becoming quite worn out, not to mention that his leg has gotten larger and it was beginning to cut into the skin. 



The technician at Hanger Proesthetics took one look at the brace and decided that he just needed a completely new one.  She told him to hang onto the old one and if he decides to go swimming anymore to be sure and use the old brace. 



This morning I took him for an evaluation and it was decided that he could benefit from some one on one counseling.  It seems that the stress from the last year has caught up with him and is wearing him down and affecting him in his daily life. 



He will have one private session a week starting tomorrow afternoon.  I hope that this gives him some relief.

This afternoon we went to his weekly maintenance chemo appointment and had a long talk with Dr. Albritton.  During our talk, Tanner made a statement along the lines of that he's decided that he wants to spend "what life he has" living right and enjoying his family.  The doctor told him they are going to do everything in their power to see that he has a long life.

It's those moments when something unexpected comes out of his mouth, or the reality of his situation will hit me out of the blue, that my heart just breaks all over again.



The doctor asked me how I was doing and I told her that I was doing "ok".  I have bad moments, but all in all, I do okay.  I am just so very tired most of the time.   

She told me that she thought I would benefit from some counseling myself but I have to admit, I've had problems with counseling in the past.  It's often very hard for me to open up to people, and if I'm going to be quite honest, I just don't have money to waste on counseling for myself.

Sooo, what I will continue to do is what I've been doing for the last year.  I will turn to the blog.  Hope you guys don't mind....

Sidetracked

Tanner's treatment is moving along as usual.  He's actually at his Oncologist's office this afternoon for his treatment this week.

So far, his nausea seems to be better but he doesn't have much of an appetite most of the time.  He's still walking using the one crutch and, occassionally, he may take two steps on his own without using the crutch but they are very halting steps and he can go no more than a short distance of a couple of paces.

The doctor has written a script and we need to go and get him fitted for new straps for his brace, or maybe even a new one, since his leg is getting bigger and is slowly catching up to the size of his "good" leg.

I don't think he or I either one have much hope that the leg will heal enough by January to avoid surgery, but I guess you never know and we'll see in four months.

There's been a lot of upheaval in our family this week and it's been overwhelming. Regardless of the fact that Tanner has cancer, he's still an 18 year old boy with all the pressures that entails.  There's just so much peer pressure at this age and life isn't easy. 

Marty (his nurse in Little Rock) and I talked during this last trip about the fact that she fears that Tanner is so afraid that he's going to die young, that he's grabbing onto life with both hands and maybe being tempted to do things he wouldn't normally consider doing - judging by the tattoos and ear gages that he's recently acquired (she's the mother of a son and seems to understand some of the pressures they face).

Tanner came to my office yesterday and spent some time talking to my boss, Bruce, and when we left the office he broke down and cried and told me he was sorry for a lot of things and that he realizes that he needs to start taking on some responsibilities and get his life back on a productive track.

Then, knowing that we've had a stressful week, Kirk came over to our house and took us out to eat last night and it meant a lot to Tanner.  Kirk has been a constant positive male role model in his life for about twelve years now and it means so much to Tanner when he gets an opportunity to spend some time with him.

He asked Kirk when he was going to cook some pasta with the red wine sauce and Kirk told him he was sure that could happen in the near future. These sorts of things mean so much...

Tanner admitted to me that he knows his life has gotten side tracked but that he's ready to turn things around and focus on the positive things in his life.  He is going to take more responsibility for taking care of himself, he's going to check on some of the grants and scholarships available to cancer patients, and he's also going to contact some of the cancer societies that try to help cancer patients find employment within their capabilities.

I am so ready for things to turn around.  I need some "normal" for a while....

As is often the case, I don't always know how much "honesty" I should put out here on the Blog.  I don't want to hurt anyone's feelings and I don't want people to become disappointed in Tanner, but on the other hand this blog has often become my lifeline in trying to handle everything that has happened to me and Tanner during the last year.

Just because he's a cancer patient, doesn't mean that he's a perfect teenager.  He's like many other young 18 year old males out there.  He's trying to find his way and sometimes he hits a detour.  I am just so grateful to those who stand by us as we travel this journey down Tanner's road to recovery - and to adulthood.

Back to maintenance

Well, we made it back from Little Rock this weekend.  The good news is that Tanner is still in full remission and all the tests look better than the previous tests.

The only "active" lesion is in the right femur and they say that lesion is just so big it's going to take it a while to heal.  The bone marrow in that area is "almost" normal and they say nothing to worry about.

The bad news is that Tanner's broken left tibia shows no perceptible healing since the last CAT scan done in April.

Dr. Nicholas says that he wants to wait until we come back in four months for his next re-staging tests and see if there is any improvement.  This is exactly what he said to Tanner in April so,needelees to say, Tanner was disappointed.  He was hoping to either have healed enough that they said things were going to be fine on their own, or that he was ready for surgery.  He is just ready to get rid of the crutches.

We asked Dr. Nicholas if he thought four more months were really gong to make a difference since it's already been over a year and he said that the surgery wasn't without risks and he didn't want to go there unless absolutely necessary.

After thinking about all of this during the drive home, I called his office yesterday and left a message that I wanted them to just be aware that Tanner only has a few more months on his COBRA policy after which time he will only be covered on Medicaid.  I told them I didn't know if this made a difference but that I wanted them to be aware of the fact.  After hanging up, I thought I should have probably told them he will also have another $10,000 deductible after the first of the year.  I haven't heard back yet.

The only change the doctor at MIRT made on his maintenance chemo is that they slightly reduced the steroids in an effort to abate some of the nausea and the gag reflux when Tanner tries to eat.

We are heading to Cooks Oncology this afternoon to get him back on his treatment.  I'll be sure to keep things updated.

Worry worry worry

We head back to Little Rock tomorrow afternoon.

Needless to say, the "Arkansas Tension" has arrived - but this time it's hit Tanner too.

This is the first time that he's admitted to me that he's nervous (since he was first diagnosed).  Saturday night he asked me what I thought about our trip to Arkansas this time and I told him that I thought everything was going to be fine.  He said he "hoped so".  I told him that I thought all of his symptoms (lack of sleep, inability to eat very much, and pain in his right femur, lower back, and shoulder) could be caused by his medicines and asked him if he didn't agree.  He said he didn't know.

Last night we had an emotional talk and, let me just say, I'm glad we are going to see Dr. Barlogie this week.  Tanner cried and told me that he just doesn't feel good.  That he can't sleep, eat, and is in pain nearly all the time and that the doctors here in Fort Worth can't seem to help him.

I think Tanner (and myself) need the reassurance of the tests to assure us that everything is okay and the chance to talk to Dr. B.

I ask myself all the time when the worry will lessen....

About time for AR

Well, it's nearly that time again.  We head back to Little Rock Tuesday for the re-staging tests and to find out if Tanner is going to have to have surgery or not on the broken leg.

The Arkansas tension has arrived.

I was "ok" all day at work today and then I went out to dinner and started crying and have been crying off and on all evening.

I saw what my mom went through with all of her children, but I never truly grasped the worry that a parent endures until I had my boys.

On another note, we have this thing in our family called a "Cemetery Working" where we take flowers down to the cemetery in Red River where most of our family is buried.  You place the flowers on the graves and have a picnic out in front in the designated picnic area.  My mom, dad, two brothers, grandmother, and aunts and uncles are buried there. 

The Cemetery Working (or as my Aunt Tincey says, Homecoming) is the first Saturday of October, which is the Saturday that Tanner and I return from Arkansas.  I keep going back and forth about whether or not I should take the flowers on down there this weekend (I promised my mom I would make sure there were flowers there) or stop on the way back from Little Rock the morning of the Cemetery Working. 

My fear is, what if something happens that stops me from getting there Saturday morning?  Tanner has two doctor's appointments Friday which most likely means we will be there all day.  Depending on how late we get through will depend on when we can head back to Texas and, though I plan on going to the homecoming, what if we just can't make it?

I think my plan is that when I get off work this Friday afternoon, I'm going to head on down there and put out the flowers (I already have them in my car).  That way I won't have to worry about them.  They will be there for the homecoming regardless of whether or not Tanner and I get to stop there Saturday morning or not.

My hesitation is that I'm kind of a basket case right now and I don't know how well a trip to the cemetery, where most of my family is buried, will sit with me right now. 

Oh well, maybe it will be good for me.

I'm a mess.  Sometimes, I seem ok but I think deep down, I'm always really a mess.

I wonder what is going on deep down inside of Tanner?

X-Rays

Tanner went to the doctor alone today and they decided to do x-rays. It seems that he is having some pain in the right femur (where the largest lesion is) and his left shoulder. I was with him when he talked to the doctor about the fact that he was having occassional pain in the right femur a couple of weeks ago and they thought it was probably because of the bone strengtheners (which cause the bones to ache) and the fact that he's up and around and acutally walking (with the crutches, but actually walking instead of just swinging along).

He texted me all of this at the end of the appointment today and, to tell the truth, it kind of scared me. You know me, I think I should always be there if they are going to have to do any tests or anything on Tanner.

His appointment was at 12:30 and he ended up being there until after 4:30 p.m. - which meant he drove home in the 5:00 traffic! He said they told him that they won't have the results until Monday. I asked him about the left shoulder (since he's never told me that it hurts) and he said it's been hurting since last weekend. He thinks he might have just pulled a muscle or something but he's careful to tell the doctors whenever any pains occur - which I think is a very good thing.

Painting Justin boots for cancer auction

He is going out with another new girl. Well, actually she's not new. She's been a friend of Tanners for a long time and now they are dating. If I didn't think I saw much of him before, I hardly ever see him now!

We head back to Arkansas at the end of the month so I'm already beginning to feel the tension build. It's that "AR" tension...

Texas DOI

Tanner has been out at his dad's house all week and is going to come home on Sunday.  I've missed him...

We have spent so much time together this past year, it's been a little hard as he's pulled away since we got back home and spends more and more time with his friends. 

Normal behavior, I know, for an 18 year old!

The Texas Department of Insurance called me and said that they are sorry but they aren't going to be able to assist us with Tanner's appeal against US Health and Life. She said that the Texas DOI can't determine "medical fact:" - which means they can't decide if Tanner's treatment was experimental or not.

At this point, it would be up to us to seek legal counsel and go before a judge and let the judge decide.  The Texas DOI and Tanner's doctor here at Cook Children's Oncology Department have given me contact information for the Patient Advocacy Foundation who assists cancer patients locate the help they need when they run into situations like this with their insurance companies.  We've also talked to an independent lawyer (not associated with any of the cancer foundations) who is doing some research on Multiple Myeloma and Tanner's case.

I guess we'll just see where it goes from here.

Tanner is doing okay.  He seems to be really tired no matter how much rest he gets and still doesn't have very much of an appetite.  We head back to Little Rock at the end of the month, so we'll see what Dr. B has to say.

I'm going out to the lake tomorrow with some of my cousins.  With highs in the 80's and lows in the 60's, it promises to be a beautiful weekend!

Smooth lately

Things are going pretty good for Tanner right now.  He's actually out at the river with friends today. As always, he's not much letting the brace and crutches slow him down.

He's been losing weight and this past week he told the doctor at Cook's that it wasn't even so much that he's nauseated anymore (he's been taking his stomach acid medicine first thing every morning for the last couple of weeks), he just doesn't have much of an appetite right now.

He also hasn't been sleeping much, but I don't know how much of that is possible side effects of the drugs, and how much is just being 18 years old.

I don't know if I've mentioned it or not, but a month or so ago our back door was kicked in and the X-box 360 was stolen.  They didn't take anything else, just the X-Box system.  Since then, Tanner hasn't spent a lot of time at home.  He seems to be on the go all the time.

He went to TCC this past week and talked to a counselor and she gave him some information about grants and things and next week he's going to go back and take his placement test. She told him he could start online courses at any time but he would rather have the experience of going to the campus so he's going to wait and see if Dr. Nicholas says he has to have surgery on the broken leg or not when we got back at the end of September.

I'm picking up my granddaughter this afternoon and will have both grandkids tomorrow so I'd better close this out and run to the grocery store.

MawMaw needs to pick up some food for the babies!

Happy Birthday Trevor

It's my oldest son Trevor's 23rd birthday today!

I'm taking him, Kelsey, BB, and Tanner all out to dinner tonight to celebrate. My little family; I'm thankful for them all. I love them so!

Trevor wants to have friends over Saturday to celebrate so I'm considering a road trip.

I think I'm going to go down to Clarksville and put flowers out on the graves of my mom, dad, and two brothers.  It's been a long time since I've been there and I promised my mom I would make sure they had flowers. I'm falling behind on my promise.

That will give Trevor some time with his friends, fulfill a promise I made to mom, and I'll see what kind of gas mileage my little FIT gets on the highway. LOL!

Happy Birthday Trevor!

Bad days

I'm sorry for the delay - once again - in posting.

Tanner hasn't been feeling very well. In one week he's lost six pounds.  The doctors want him to start taking his stomach medicine every day instead of waiting until he has a problem with nausea.

He said that for about three days, he hasn't been able to eat anything except bread. Since he's started the nausea and stomach acid medicine every day, things seems to have gotten a little better and he's eating better.

I received another letter from the insurance company stating that since the error they made in paying for Tanner's maintenance chemo treatments in Fort Worth since December is their fault, they wouldn't ask for their money back.

It's so sad, I have to laugh or I couldn't stop crying.

I'm really having a lot of personal problems with some of the people in my life whom I thought I was closest to and it's hard for me to just go on right now.

I'm sorry if the blog isn't more informative. I just don't have it in me right now.

Ridiculous Insurance

Well, our Case Manager Cindy called me Thursday and told me that they have decided to not cover Tanner's chemo in Fort Worth either. They have deemed it "experimental" just as they have the chemotherapy that was performed in Arkansas all last year.

I wrote to the Department of Insurance appealing their decision and US Health and Life responded to them and said that they had made many exceptions in Tanner's case (one being assigning us a "Case Manager") and that even though their "experts" had decided that Tanner's chemo was experimental, they (US Health) had covered the chemotherapy treatments -- they just didn't cover the drugs used.

What?? What in the world did they cover?

I guess the insurance company decided since the DOI determined they couldn't help us with the chemo situation in Arkansas, they would go ahead and deny service in Fort Worth too (even though, from what we can determine, they have been covering these treatments for months now). I asked Cindy (the case manager) if this meant they aren't going to cover any of the maintenance chemo treatments he's been receiving since December and she said that was correct, they have deemed it all "experimental".

Also, they said they covered one stem cell transplant but when we go through all the EOB's, we can't find anywhere that a transplant was paid for.  Around the time that the first transplant was performed, there is a charge for around $43,000 and the insurance company only paid approximately $900 on those charges. If this is what they are talking about, I don't think that is anywhere near "covering one stem cell transplant'.

I called our case manager on Friday morning asking her to please call me back and tell me when and what they paid on the transplant. She hasn't responded yet.

When I received the call informing me that they have decided not to cover the maintenance chemo either, I just broke down at work. Afterwards, I called my mother-in-law and she told me that getting upset didn't help, but sometimes I just have to cry.

I cry, get it out of my system, and then move on and function again - but occasionally I just have to to let the tears come for a while. I've found that while I'm dealing with Tanner's illness and all that that entails, I have so much less patience for all the other areas of my life. I am so easily upset and end up with bruised feelings.

Sometimes I just have to hurt.

Tomorrow, I'll move on and deal with everything and we'll get it all sorted out.

"When you're dreaming with a broken heart

Then waking up is the hardest part

You roll outta bed and down on your knees

And for a moment you can hardly breathe"                             

New Doctor

Tanner drove himself to the chemo appointment today (he is making himself a necklace in this picture here from last week's appt.). I guess if all goes well, I will start letting him drive himself to the "fast track" appointments and I will only go with him once a month to the "doctor" appointment.

Last week was the appointment where we actually saw a doctor and when we got there, we found out Dr. Davis had "resigned". It was all very sudden with no warning at all and the vibe about his "resignation" wasn't very positive at all. I'm not sure what exactly happened but Tanner was assigned a new doctor that we both really liked.

Her name is Dr. Allbritten and she works a lot with young adults in Tanner's age range. She is very active in getting teenagers with cancer across the Metroplex together in support groups. She explained to Tanner that while most practices in the area don't have a whole lot of teenagers his age, if you combine their access to each other from practices across the Metroplex, then the group gets quite large. She said they recently got together and had an "Iron Chef" type cook off and that when his leg heals, they have adventure excursions that they take (like kayaking). Tanner was very open to the idea.

He has been spending a lot of time with his friends lately but he and I had some quality one on one time with each other this weekend. Saturday we went to On the Border (of course) for lunch, stopped and bought him some new tennis shoes (so that he doesn't always have to wear houseshoes), and then went to the movies to see The Sorcerer's Apprentice.

It gave us an opportunity to talk about his future. I told him that I understood that he wanted to "chill" for a while after all of his treatment this last year and finishing high school, but that he's been in remission since December and I think it's time for him to find something productive to do with his time.

He said that he agreed and has found that he's getting tired of "just hanging out". Dr. Allbritten said there are all kinds of scholorships for children who have had cancer so we are going to have her gather some information for Tanner. He's going to go this week and take his placement test so he will be ready to start school as soon as we find out when/if he is going to have surgery on his leg or not.

He has been having problems with a lot of nausea lately and he said his bones ache. I asked Dr. Allbritten if the aching could have something to do with the Zometa (the bone strengthener) that he is taking now and she said that could very well be the case. I need to do some research and see what I can find on the side effects of this medicine and how long they usually last.

The Social Workers at Cook Children's Hospital have applied for Tanner to see if he qualifies for any assistance and we have an appointment with the Social Security office on Wednesday. It will be interesting to see how that meeting goes.

I don't know how much longer he will have Cobra since he's been on the policy for over a year now. Hopefully, he will qualify for Medicaid which would be very helpful with all of these very expensive medicines he has to take.

We discussed his applying at some of the establishments where he could possibly get a job using his wheelchair but I told him he might as well wait until we go back to Arkansas at the end of September to see about his leg before he starts to seriously look for employment.

It seems that a lot is in limbo at this point until we see if surgery is going to be necessary.

A Lullabye

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn Around and you're two

Turn around and you're four

Turn around and you're a young babe going out the door

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn around and you're six

Turn around and you're eight

Turn around and you're a young lad

going out of the gate

Where are you going my little one ..little one

Where are you going my baby ..my own

Turn around and you're young

Turn around and you're grown

Turn around and you're a young man

With a life of your own

On his own

Well, I let Tanner go to his chemo appointment today without me. He asked if he could just go by himself and I told him that I worry about him driving after they give him all of the medications.

At first, when they would give him the massive dose of the nausea medicine through his IV, he would get really loopy for a while. The last few times I haven't noticed any side effects from the medications but I told him I would still feel better if we waited and asked the doctor what he thought about Tanner driving himself. We finally came to a compromise, and one of his friends went to the appointment with him this morning.

We actually see Dr. Davis next week (we only see him once a month now days) and I will for sure go with him so we can ask the doctor what he thinks about Tanner driving himself to the chemo appointments every week.

You know how moms are, or at least how I am, I just want to hear that it's officially okay with the doctor.

I've been emailing with a lady from the insurance company this morning trying to determine how much out of pocket we will be responsible for if Tanner has surgery on his leg later this year.

It seems that since UAMS is "out of network" there is a $10,000 deductible and a 50% co-payment with NO out of pocket maximum (meaning we would have to pay 50% of all charges). If he has surgery in Fort Worth, there would be a deductible of $5000 with 80% coverage and $5000 additional maximum out of pocket that would have to be met.

Since we've already been billed well over $10,000 for charges this year, I'm sure we've met his deductible and co-payment maximum for this year so I'm really going to do my best to persuade Dr. Barlogie and Dr. Nicholas that we have no choice except to have the surgery performed here in Texas. Unless, of course, we hear the miraculous news that his bone is healing and surgery won't be required.

I'm not counting on that since we've already gone a year and there's been very little healing to date, so I'm just trying to prepare myself for what is surely coming.

If surgery is going to be necessary, then we need to get it scheduled because I know Cobra coverage is limited and he's already been on the policy for over a year.

Tanner just wants to be treated like everyone else. He doesn't want to talk, read, or hear about multiple myeloma. We were talking this weekend about the possibility of surgery and he told me he thought his leg was fine; that the CAT scan picture was "too good" and that he should have just had the x-rays done and not a CAT Scan.

I explained to him that the reason Dr. Nicholas had the scan done was because he needed to see an accurate picture of how the bone looks and you could clearly see the break all the way through the tibia. The discussion moved on to insurance and deductibles and bill collectors and he ended up in tears and told me his stomach hurt.

No teenager should have to deal with all of this.

You know, you have these children and you love them to the depth of your soul. You raise them to the best of your ability and they touch your heart with this unimaginable love - and they sometimes break your heart with this unimaginable pain - but no matter what, you just want to take care of them. You just want them to be happy and healthy.

You never imagine that cancer will touch their lives. You often think about how grateful you are that your children are healthy and then one day, in an instant, it all changes.

I go to work each day, I go out with my friends, I play with my grandchildren - but never ever is "cancer" far from my mind.