No More Chemo

January, My Nemisis

What does January mean to you?
When somebody says the word January to you.. think of the very first imagine that comes to mind.
New year, end of holidays, snow, cold, starting over, New Years resolutions... losing weight, working out.... taxes, bills..... school starting over.... maybe even snowmen.

Tucker is sitting with me right now, we are currently getting chemo..... so Tucker what does January mean to you: Cold, painful- the cold makes my legs hurt more... white, cold winds, frozen water, cold (yes I think we know about the cold)... oh and coats, mom is always bugging me to wear my coat- oh and snow-forts too- oh and mom is always flipping out because she thinks I'm going to get sick (wonder where i got that paranoia from).

When I think of January a cold shiver runs up my spine..... at the end of December each day we inch closer and closer to January I become more withdrawn and quite. Sure, I'm happy with the holidays and all- but its just this feeling of doom & gloom in the back of my brain that grows bigger and bigger with each day that pulls me closer to January.

Ugh- January-
Nothing good ever came from January.
The NBC's "Today" show premiered (well, ok... its not THAT bad)
The first Super Bowl was held.. (sorry Super Bowl fans..)
The Space Shuttle Challenger exploded...
and on average January is the coldest month of the year- enough said (although i could not have even said that much without the help of Google).

I mean really.... January.... the coldest month of the year... can anything good come from the coldest month of the year?

I've left out the 2 most important evens that have happen to me in January- its BOTH of Tucker's cancer anniversaries.

Ugh, how depressing is that?

Both major life changing cancer events have happened in January- horrible January. Now it makes total sense why I hate January. 2 times now, we have started out the new year with hope and optimistic points of views... and 2 times it was the start of the worst times of our lives. So now when January rolls around I just can't think of anything.... good to say about January. In the spirit of being completely honest- I would like to address this to the month of January- they say in therapy you should just get it off your chest, if you have thoughts and feelings that need to be expressed, then express them!

So, dear January, I hate you. I hate that I feel personally imperfect when you come around and by that associated guilt making me join a gym. I hate how out of every resolution I've ever made in your month, I've only ever kept one of them.... and even though I know that's my own fault and own short comings are my fault (I know people, I know January can't make or break me in any way)... I still believe, deep in my heart, that its all January's fault. January personally hates me and Tucker. I think it has it out for us..... stupid January anyways..

On the bright side, and in January of all months....we are almost DONE with chemo! Can you believe it?! Well honestly I'm having a hard time believing it, in fact I've taken a more of a I'll-believe-it-when-I-see-it attitude- or more exactly- I'll believe it when the tests come back clean.
*sigh*

I think January has made me a pessimistic person.
So for now we are scheduled to do big test next week- the type of tests that can turn a mothers heart inside out- the are-we-really-done type of tests. They are going to do a spinal tap to test his spinal fluid AND the are going to pull out a sample of bone marrow and get that tested as well. Every 6weeks up here they have done spinals on Tucker to make sure his fluid is still clear of cancer cells, but I believe the last time they tested his bone marrow was when we first relapsed.... what about 2 years ago? I think the bone marrow test is going to give me a panic attack. I mean really, we are so SO close to being done with this cancer.... AND we are still currently in the month of JANUARY and they want to do a bone marrow test?! See what I mean? I know January must have a personal vendetta against me.....

Tucker just had a long day of chemo yesterday, and he feels and looks like a truck hit him today. I just can't wait until its over. I can only imagine how Tucker feels. In a way its like he can start his life again..... the sad thing is cancer has taken almost all of his childhood.... but its never to late to start over, right?


This picture is SO cute... Tucker was too sick to make it to school today so he fell asleep on the beanbag, and there is a dog under each arm- and our big dog Honey is sulking in the background because there was no room for her. Justin said that Honey kept standing up and pacing in front of Tucker (who was cuddled up with the 2 other dogs)... and she would whine and get this look on her face like "what about me?". It was so cute.


So everybody cross your fingers, offer up a extra prayer or 2.... next week will be...
it will be.....
it could be.......
it might be my prayers coming true.....
it could be Tucker's prayers coming true....
So maybe... just maybe....January could be the best month yet....

with love....
Stressed & needs a vacation- Amber & Justin
hanging in there- Tucker

 

 

 

Even at Chemo....you cannot escape HOMEWORK

 

Tucker at Chemo getting his port accessed with his nurse Trisha

Tucker all wiped out after chemo, snuggling with dogs.

 

 

 

 

Letters to Santa, My Favorite Christmas Story.

This is Amber's favorite Christmas story and loves to share it every year.

 

Back when Tucker was 5 years old and we had just about survived our first year with our first cancer treatments,Christmas came around. This was our first “cancer at Christmas time”.Life was hard. So many things had changed for us in year. I moved back home with my mom & step-dad -Denise and Reese- they opened their home & heart to us and were fully involved in helping me care for Tucker while I still worked full time and did full time chemo (its quite the balancing act). I remember that Christmas (2005) I was sad and not expecting a big Christmas, I just didn’t have the money, but mom & Reese were doing everything they could to make it a great Christmas for Tucker. Still I just wasn’t feeling the sprit of the season- yet. I picked up the Hearled Journal one day (Logan’s news paper)and read this thing they were doing, your kid could “write to Santa”and send it into the newspaper and they would publish some of the letters.

It was a good idea, Tucker was a true believer of Santa (remember he was 5) and he was so worried that Santa would think he lived at the hospital and he wanted to write him a letter to tell Santa exactly where he lived now so Santa didn’t get lost. I sat down with a paper and pen and told Tucker “I’ll help you write the letter, and we will send it off right away”…. And this is what came out of the most memorable Christmas I’ve ever had.

*ToSanta from Tucker age 5*

Dear Santa,

I have been very sick this year with cancer, but I have done everything the doctors told me and I only cried at all the shots, but that’s it. Wish you could see me, my hair grew back! I want you to know I live with my mommy at my grandparent’shouse and NOT the hospital. I will try not to cry at the shots. For Christmas Iwould like never to be sick and a slurpee machine (my favorite thing). I want Sharkboy and Lavagirl (my favorite movie). I want a computer and a printer and a desk.

Please bring Bruno a BIG bone, he is a good dog.

Tucker

I remember trying not to tear up as I was writing this letter- was serious stuff to ask Santa! And it was also just a testament to how a 5 year old brain works- I don’twant to be sick and can I get a computer? LOL…. Only a kidcould think like that. I found out later that he had asked Santa for a computer and such to give to me, man- I have a sweet thoughtful kid!  I told Tuckert hat I know Santa doesn’t think crying at the shots is a bad thing and it wouldn’t put you on the “naughty list” because you do- but he was very serious about telling Santa he would try harder to be stronger.

Wow- right?

Well, I got the letter sent off to the “NorthPole” aka: The Herald Journal and I didn’t think much about it until the first edition of the Letters To Santa came out in the paper on December 22,2005. On the first page the first letter on the list, sure enough it was Tucker’s letter. I thought “oh, that’s sweet” and went on my way.  The next day, afternoon sometime- there was a knock at the door, I believe my mom went to answer the door. I remember her walking over and opening the door and then shutting it- she turned around and said “Tucker, it’s for you.” So Tucker and I walked over to the door and opened it up and there were multiple huge beautifully wrapped presents on the door step with a letter on the top of the stack.  So I took all the presents inside and sat Tucker down and we opened the letter, it read:

Dear Tucker (and Bruno)

I got your letter late and my sack was already filled. Since there was no room in it I brought these presents early. I hope you don’t mind. Enjoy them now,

Love Santa

P.S. Ihate getting shots too, the make me cry. Please don’t tell any one, it will be our little secret.

My jaw hung open in complete shock and surpriseas my little 5 year old was bouncing around and couldn’t contain his excitement-Santa got his letter! Santa was just at our DOOR! I said to him “open these presents, Santa’s orders!”.  Sure enough in the big box was his Slurpee machine (they were the “hot” toy that year) and if that wasn’t enough, it looked like Santa had raided the nearest 7-11store because in other packages we had a huge stack of official slurpee cups,and straws and lids & napkins. At this point I was stunned… as my 5year old was ecstatic beyond anything I could imagine or anything I could properly describe to you in this post. The feeling in the room at that time was, breathtaking… and so hard to describe, it was wonderful.

After Tucker opened all his slurpee stuff there was still one package left. I calmed him down long enough to open thelast present and sure enough- it was a HUGE thing of BIG bones for Bruno. Bruno was my mom’s basset hound dog, who would never leave Tucker’s side and almost daily became Tucker’s “pillow” or would sit byTucker when he was throwing up, Bruno was the love of Tucker’s life and I believe helped Tucker in so many ways dealing with the chemo and what he was going through.

Christmas's come and go & you never really remember the stuff you get- it’s the profound moments that stay in your life. This story I think of every year when this time rolls around, this is the story I will never forget. I want to encourage youall to be that Santa to somebody- be that person who has such a profound impact on somebody’s life that they will never, ever forget that moment and that feeling that you gave to them & that you made possible. Santa may have givenTucker what he wanted, but he gave me something even more precious- he gave me this memory, and that is more precious then all the toys in the world.

Merry Christmas,

With love

Amber, Justin & Tucker

Tucker 5 & Bruno September 2005

Tucker 5 1/2 years old, December 2005

XBOX 360

Here we go again!!
Let's Help Tucker collect XBox 360 games again to take to the kids fighting cancer at PCH.
Please No R or M rated games.
Email Tamy@teamwilson.org for questions.
Thanks so much for your help again.
Aunt Tamy and Tucker

Not Your Ordinary Marathon

Yesterday we started Tucker’s weekly chemo- and boy, were we in for a SHOCK. The day started out normal enough… Tucker had gotten his homework ready to take up to chemo to do (I have SUCH a good cancer kid!) ….I was dressed, but the make up and the hair due did not make the “cut” that morning… I needed extra time for some extra coffee to get me going…. So I sacrificed makeup & hair for coffee- gotta pick your priorities someday.

Dr. Afify was out of town so we saw Dr. Lemons, who knows all about everything! I feel very comfortable with him, whenever AFify is out we see Lemons so the comfort level is strong with him, and like always when Dr. Afify is out of town she leaves very long and detailed notes for whatever doctor is going to take care of Tucker, I love that about her. Anyways, we only had a few issues to bring up, Tucker’s leg pain & multiple other pains- that will be there all his life I’m sure-  and other little issues…. Tucker is falling asleep in class at school and when he comes home he goes right to bed, then wakes up eats dinner and goes back to bed… then goes to school and falls asleep in class. At first we (including the doctors) thought it was due to low/bad blood counts, but his blood is looking great- so Dr. Lemons said its probably chemotherapy/cancer fatigue…. his body is worn down- his body is exhausted…. I don’t think anybody can blame him for that- we have been putting his body through the ringer now for 8 years, we did have a 2 year almost 3 year “break” in between cancers… but I picture his body handling his cancer kind of like a marathon race-

When I ran my marathon (yeah for me!- I will confess it was YEARS ago) the start was very scary, lots of people telling me what to do and the “best way” to do it. I was so scared that I wouldn’t make it to the end…. But then I fell into a great rhythm and just focused on reaching each mile. As the aid stations came into view I would celebrate because I knew help was close by.  By the middle of the race- boy, I was tired and my pace was slower my breathing heaver and my outlook on “oh how cool this marathon will be” had changed to “what in the world was I thinking?!”…. my pace was mostly a walk but I would try to jog every few yards…. Towards the end I hit “THE WALL”… my “run” was more of a dragging-my-now-dead-weight-legs-behind-me-in-a-zombie-type-fashion but I was committed- I WOULD reach that end or die trying. As I rounded the corner and saw the most beautiful view ever- the FINISH line- I made it, I was alive, I had accomplished my goal!

Now reread that statement and think of how that applies to cancer, anybody’s cancer treatment. We are all scared at the start, then we fall into a rhythm, towards the middle it gets harder, and when the end is in sight its like slow motion running towards a goal that is just out of your reach… just a few more miles…. Just a few more yards…. Just a few more feet…. And then you REACH it, you’re done. Right after the marathon you walk around, catch your breath, your sore, tired, hungry, sweaty- you take a break sit down and relax and enjoy the victory… enjoy the WIN, catch your wind, and enjoy the victory! Then stand back up and they tell you that you have to start the race all over again.

That’s how I see Tucker’s body.  He made it through one “marathon” of  one cancer…. Was just enjoying his victory & catching his breath- and then he  had to start running  ANOTHER marathon.  He’s just exhausted… but he keeps up his pace, he keeps jogging every few yards… every now and then he looks like zombie… but he shakes it off and moves forward.   Tucker is just AMAZING to me. 

Funny thing- I had to send an email to Tucker’s teachers at school, it was one of those emails I never thought I would ever have to write- but in a nutshell it said “Tucker may fall asleep in your class, it’s not because your boring, it’s because he’s tired, but he wants you to know you’re not boring.”
All in all chemo went ok yesterday except for one very sad thing- A year ago you all helped by donating to Tucker’s “Beat Boredom” drive, we were collecting all new DVD’s and Xbox 360 games and Gamecube games, Playstation games- one day when we were getting chemo (a year ago) Tucker was playing the games & they were all scratch and the movies were scratched- so Tucker wanted to give back the one thing that he LOVED about chemo…. Playing the Xbox 360 games. Silly right? Keep in mind this is from the mind of an 11year old boy.... and what do they always think about? Games… gaming… ect. So we had donations coming out our ears! Tucker’s school Quest Academy held a huge drive and we had TONS… we were able to donate not only to the Oncology Clinic, but to the Oncology admission wing & other areas in the hospital. I mean it was a HUGE success. Well yesterday when we went up for Chemo Tucker walked over and grabbed an Xbox 360 and the “game book”….. he opened the game book and all the games except for like…..10 games… were gone. So I asked the nurses…. Umm… where are all the Xbox 360 games? She looked at me… looked sad… and said that somebody had stolen the games.
My jaw dropped…
Excuse me? What did you just say?

Sure enough somebody had stole all the Xbox360 games!

I was in shock… total complete shock. Who could…? How could…? Who would….? They stole from the kids who are fighting CANCER…. Not from the mom’s or dad’s or nurses or doctors…. THE KIDS WITH CANCER….

Tucker had tears in his eyes, he had worked SO HARD to get such awesome games up there- and all of the other mom’s with their kids had donated also- we had kids meeting us up there during chemo giving Tucker games… these kids were giving games that was their favorite game that they wanted to share with all the other cancer kids, they were raising their own money to buy a DVD! I mean, it was AMAZING….

And now… its gone?! I’m just so… sad… mad… I just don’t know what to feel… I just feel kind of deflated… and tired…. I just want to crawl up in a ball and cry.

So I want to thank all of you for your games and your DVD’s that you donated last time…. And in the words of classic Oliver Twist…. “Please Sir, May I have some more?”.

If anybody has anything they want to give, please let me know. I’m hoping to try to replace everything that was taken.  Please leave a message on the Blog/FB or email my sister Tamy, tamy@teamwilson.org if you have any questions or would like to donate again.

Love to all

Amber, Justin & Amazing Tucker man
 Here are all the games and movies collected October 2011

 

The following pictures are from Tuckers first "Cancer Marathon" notice he's playing games the whole time. 2006-2008 (6-8 years old)

Justin, Amber, Tucker and Dr. Affify 2008, the end of our first Marathon

2011 Gaming Pictures Below Tucker 10-11 years old

 Tucker receiving a game donation from cancer patients October 2011 Tucker 11 years old

 

 

 

August 2012

Amber and Justin

 Tucker with Cousins Aspen and Xavier camping at Yuba over July 4, 2012

 

Playing at Willard Bay with Cousins

 Boating with cousins Willard Bay July 2012

 

Mom's Have Drama Too....

My life kind of goes like this.... in a nut shell...

Tucker to the doc...

Tucker to the doc.......

Tucker to the doc..........

Justin to the doc.......

Tucker back to the doc......

Justin back to the doc....

Tucker..... Justin.... Tucker.... Tucker.... Justin....

then, ME?!

I have the hardest time going to the doctor for myself.... I will wait until I think I'm totally on the brink of death... and THEN.... I'll wait just another day to make sure I'm sure that I really still seriously feel like dying..... THEN I'll go to the doctor- grudgingly.

Mom's not a happy camper- not by a long shot. I'm the patient they all avoid....

OK, hopefully I'm not THAT bad....

I mean... I'm no JOY... sure...

Last month in a fabulous blonde moment... I got up in the middle of the night to go to the bathroom and I fell over the edge of our bed- Our bed that has been in the same place for years- I tripped and fell in a very ungraceful, unladylike- KA-BOOM... type of way.... the edge of the bed scrapped up the side of my leg and I did a funny trip-twist pretzel move to my knee. I didn't think much of my fall at the time, my leg hurt from the scratch, I was pretty embarrassed and very grateful that the lights were off... so I just went on my merry way, and like a week after the fall my knee started to swell up and hurt.... and it kept getting worse and worse to the point that I actually had tears in my eyes & I couldn't move my leg/knee very well- Justin and Tucker were fed up with all my complaining & I was fed up with the pain- so I finally made a doctors appointment. This was on a Thursday that I decided to be a "grown-up" and go to the doctor, so I called up Dr. Halls office and pretty much demanded to be seen the next day (I wasn't taking no for an answer and I was worried about my knee)- so they got me in first thing in the morning. I had my initial appointment with a PA of Dr. Halls but he could tell that something was wrong, my knee had swollen up like a balloon! So he told me to get an MRI on my knee-

On Friday at my appointment it was 11am and they were scheduling an MRI for my knee, the little nurse called up to Ogden Regional and they had an opening in a WEEK to fit me in- IN A FREAKING WEEK- I looked at this little nurse and I said.... THEY HAVE to do better than that! I hurt NOW- I want this MRI done TODAY.

Her eyes got really big and she said.... OK, give me a minute (don't mess with a childhood cancer fighting mom, we are a different breed of mom).

So she called the actual MRI department at Ogden Regional and surprise surprise... they could fit me in that SAME day (what were they saying about a week out?!), but it wouldn't be until 6pm that night. I told the nurse, sure I'll take that appointment- BUT you tell them I'm leaving your office right now (it was 11am) and I'm heading straight up to Ogden Regional to the MRI waiting room and I will sit there and wait until they can take me in. If I wait until 6pm, fine, but I'll be there before noon- come hell or high water I was going to get this ALL done in 1 day!

So, I show up to Ogden Regional expecting to wait for 6hrs until my "appointment"- but they got me right in, I only waited 30 minutes, if even. Again, I'm baffled by the first initial time frame of a WEEK away..... (ggrrrrrr).... They told me it would take a week or 2 to get my results, which bummed me out but I figured I was already 2weeks ish ahead of the "game"... waiting a week or 2 now for results should be nothing.

Monday rolled around, just 3 days since my MRI, and my knee was hurting- I know they told me to wait a week or 2 before they would have results but I figured it couldn't' hurt to call and just see if they heard anything. So I called Dr. Halls office and sure enough they have not seen any MRI reports come back yet- I wasn't surprised but the lady told me if I wanted to I could call the MRI department and ask them the status of my results.

Well, sure lady... let me just do YOUR job.

But OK, I'll do it- since apparently its not in your job description *rolling my eyes* And... like I always say... we are all our own best advocate...

So I call up to Ogden Regional MRI department and said... "I'm Amber, I just wanted to know if my MRI results from Friday were finished yet" and the nice nurse on the other line said "Yep, I have them right here they are completed."

I said.... "What did you just say to me...? Seriously.... they are done?, like really? Why did they tell me that it was going to be 2 weeks to get results, here its hardly been 3 days and they are done?"-

She didn't reply to that, she just asked me where I wanted them faxed to and she would send them right over.

*pat myself on the back for being my best advocate.... look what I've accomplished .. Jeez, I should go into business doing this for people- I just saved like WEEKS worth of time, .... in the back of my mind I feel like I'm doing other peoples jobs that they should be doing... but what ya' gonna do?

I called back to my Dr Hall's office and let them know they were done and they are faxing them right over, so when can I come in to get my results? They scheduled me in for the next day- COOL.

So here it has been 4 days, I got into the Dr, got and MRI and got the results and a follow up appointment to get the results- if I went by the time frame they original gave me... I would be like 4 to 6 weeks out- that is just ridiculous, I mean, I'm just shocked at the time frames people kept giving me..

So I get into the Dr and the MRI showed I had A meniscus tear that would require surgery to fix.

*sigh*

Surgery? Me?

Go figure that one of my blonde moment falls would equal into a needed surgery to fix the damage.

With Tucker's weekly chemo's going on and super busy at work, I had to put the surgery off until just last week.

So the longest part of this whole thing was by my own choosing.... crazy hu?

When I went into surgery Dr Hall told me when I woke up I would have a ice pack cooler thing along with a ace bandage on my leg and I should be able to assist/walk on my own. A meniscus tear surgery is fairly simple and straight forward.

but when I woke up- my leg, from my ankle to the top of my thigh was wrapped in a big black LOCKED in place brace, the thing weighs like 10lbs, I'm not kidding and I was told I couldn't walk on my leg at all and needed crutches (that Ogden Regional DID NOT PROVIDE FOR ME- GGGGGRRRRRRRRRRRRRRRRRRR)

Justin told me that the Dr. went in thinking he was doing one surgery, and ended up doing a different surgery all together. I had more damage to my knee, something about cartilage torn off and had to remove it and "down to the bone"... something... something... something... "takes along time to heal".... ect.... I'm still not exactly sure what he did, but I know he drilled holes into my tibia, and he didn't fix my meniscus at all- because this other big problem was the BIG problem that had to be fixed that was causing all the pain.

So now I'm home, not moving, have my crutches and a nifty looking knee brace that forces my leg in a straight position at all times. Its very uncomfortable.

Justin &Tucker... boy am I blessed to have these guys in my life... they have been doing everything and anything for me, I get hugs, and loves, and drinks and food, and control to the TV AND they will even watch the shows with me that they HATE.....I swear up and down, I think when Tucker grows up he is going to be a awesome nurse. I believe this childhood full of cancer's, chemo's, doctors, nurses and hospitals- he is getting the best training, the best grooming ever, to become an amazing nurse. I feel so blessed to have these boys in my life. It feels like we are in the hospitals or doctors about every other week, but that is just our lot in life, those are the cards we were dealt.

If anybody can take anything away from my post today, it would be- you are your own best advocate ... don't take the first time frame they (anybody) give you, be persistent be on top of it, & get it taken care of. It is such a different life on how you are treated as an adult vs how children are treated. With children they seem to get into the doctor right away, don't have to wait for appointments or results (not long anyways)- if my whole drama was for Tucker, I bet it would have taken LESS time than my 5 day turn around time that I was so impressed with (and the product of my own persistence). They probably would have had it all done in the same day. I guess when it comes to me and being in the childhood cancer world for so long, I expect the same treatment (yes yes... don't laugh... I know its a ridiculous expectation) that would be given to Tucker.

*sigh*

It should be the same for adults as it is for kids...

Anyways, sorry this post was more about my drama than Tucker's cancer- but I'm home, I can't move, I'm bored... and I'm having a pitty party.

Thanks for listening!!

Love to all-

sorry for complaining...

sorry for whining....

 

Tucker at his last Chemo/Spinal Tap appointment

Sorry for the sideways picture that is all blogger, I SWEAR!