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!

 

 

 

Urine the Clinic Now

Another day at the hospital and here we sit waiting for Tucker to pee. Each time the nurse questions "Do you have to go yet?" is met by a shake of the head. Tucker is playing video games and apparently this acts as some kind of urinary inhibitor.

"We can't start your chemo till we get a urine sample from you. Do you have to go yet?" another shake of the head.

Why is it that kids have to pee 5 minutes after you get in the car to go on a trip or any time the nearest bathroom is 100 miles away? Is there a direct correlation between video games and an increased bladder capacity? Someone should do a study, not me though, I'm just trying to insinuate images of running water, waterfalls, etc. into Tuckers subconscious. It's not working. I'm pretty sure there is a direct correlation between PlayStation and higher brain function cessation. 

Maybe if I tickle him? Can they extract the sample from his pants should he pee them? Never mind, he's got to ride home with me.

Oh wait, what is this? The nurse is now forcing him to try. This might work.

5 minutes later:

After much effort and a virtual eternity away from his game we now have a viable sample. Let the chemo begin!

Too much talking about pee, now I have to go. TMI, I realize.

We hope you have as much fun reading this as we did experiencing it.

Until next time.

Justin and Tucker

PS: This post contained no sarcasm whatsoever.

PPS: The PS was dripping with sarcasm

Hold the cream please….

 First off I need to start this off with an apology, I had no idea how many people read this blog & actually make it through my crazy writings, I’ve heard a few people have missed me (People actually read what I write?! Cool!). I know I’ve pulled away lately… I kind of hit, what I like to call “Amber’s  patch of thistles” – in my garden in my brain.

Yep, you heard me..

 In my brain- the garden of thoughts, the flowers of actions, the landscaping of sanity…my own personal garden started to grow thistles….

I think one of the most unspoken sides to childhood cancer…. Something that you never really hear or focus on is…. How is mom & dad holding up? I bet a few of you are thinking now “I asked Amber all the time how she’s doing, and she said ‘Fine’, so isn’t she fine?”  Cancer parents learn pretty quickly to come up with an automated response to certain questions…

How are you doing? Fine, thanks.

How is your kid doing? Fine, thanks.

How is chemo going? Fine, thanks.

Is there anything I can get you? Chocolate… err, I mean, I’m fine, thanks.

Is there anything going on? Chocolate… wait, that was the other answer.. I mean, I’m fine- thanks.

What do you think of the candidates running for election? I’m fine, thanks… oh wait, you asked me a real question that involves thought… ummmm…. I vote Ralph Wiggum (Did anybody laugh at that joke?).

A few months ago, there was a big concern that came up and we had the fear that Tucker had already relapsed with his cancer (within his relapse we are already dealing with)…. I was terrified… probably one of the top 3 most terrify childhood cancer memories I have (ugh, how many people can udder that phrase?)…. BUT- We did a spinal tap, tested his fluid… and he’s clean, there were no cancer cells to be found- WHEW!!!!!!!!!! (I did grow a few more grey hairs that day). All of us holding our breath let out this big huge sigh of relief…. It was like we were on PAUSE… and then the doctor reached over and hit the PLAY button… and we were just supposta take off and “play” from here, move forward with life, still on chemo- but at least making progress with the cancer we are currently fighting…. Well… as Tucker & Justin started to move forward, I noticed (not until later) that I wasn’t moving, I wasn’t just on PAUSE- I was on STOP. I had left the garden in my brain un-attended… and like weeds do, if you don’t keep up on pulling them, they will take over- I’ve never really gotten to that place before, where I just, I guess the easiest way to describe it was… I was DONE, totally absolutely DONE,  I was walking around in my mind looking at my garden and I saw….thistles. I had one thought- DONE, AMBER IS DONE, I’M DONE- THIS IS SO DONE-I CAN’T DO IT, I’M DONE.

Now what? What do you do when you’re in a phase that you don’t even know you’re in, and you’re thinking thoughts you didn’t even know you were thinking, and everybody else was moving forward- but you- and nobody else noticed- BUT you? How do you deal with a situation that, honestly, you don’t think a kid with cancer’s mom, should be in? Aren’t’ all kids with cancer parents like ultra super man/women? They can handle anything! How often do you find yourself sitting back thinking “I don’t know how he/she does this! I could never do what they are doing!”…. Trust me, I bet all the other cancer mom’s out there… they may put on a good front, I bet part of their gardens have thistles growing also- but maybe not, and it could all just be me- I know a lot of them are superwomen and I’m amazed all the time at their strength and courage and I endeavor to handle this situation like they do! I just think that this is due to the fact me and Tucker have been fighting cancer now for 8 YEARS….. my brain is tired,  I feel like I’ve had the weeds growing for a long time & didn’t know it, what do you do with weeds that you don’t know you have? You think everything is fine- you think your garden is beautiful….and then one day you step on a thistle, and you hop around and cuss until you pull that thistle thorn out of your big toe…. Then you pause, take a look around and realized your screwed,  all the beautiful flowers you thought you were tending to, were all just thistly weeds.

You’ve probably read all of that and are just totally confused,- what the crap is Amber talking about? Thistly weeds in her brain? Or is she really going off about gardening and how in the HECK does this tie into childhood cancer? Hey if you’ve read my past blog writings, you should totally be expecting something confusing, it takes me painting a picture in words to explain to you whats going on in my life….

Amber’s no-fail steps to battling weeds in your garden….

First step, realize you grew weeds, instead of beautiful flowers….(so in “normal non-amber-crazy- talk”- realize you have a problem, you’re on “STOP”, you’re DONE, essentially… you’re not “FINE”)

Second step- go get a great weed killer…. (Translation: Go to doctor and get strong meds to assist you in this battle)

Third step…. Actively try to kill the weeds… (take your “weed killer”, go for a run, work on some hobbies, try to do what you used to do when you were a normal functioning person-you need to re-train your brain how to function again- how to be a normal person again)

Fourth step-  if the other 3 steps haven’t helped you out- throw in the towel, gardening was never my thing anyways & opt to get a new puppy (we did, & named her Lucy).

I just totally pulled away; I didn’t want to think about cancer let-alone write about cancer- I went through this big “poor-pity-me” phase and I thought nobody cared.  I’ve realized now that I’m wrong especially after I’ve had many people tell me “WRITE ON YOUR BLOG!”.  I’m doing better now, I’ve just ran in the RAGNAR Wasatch Back Relay Race a couple of weekends ago (I’m still sore) and I’ve been trying to slowly pull myself out of this slump.

Like I said I know it’s a side of childhood cancer that nobody really talks about- I needed to address that side…….. and if I had a million dollars I would pay for 10 full time therapist to spend 100% of their time and focus on all of us cancer mom’s & dad’s. Hey, if anybody is reading this and they are a therapist and want to donate your time… let me know.

Ok, enough with Amber-Crazy- Ramblings….. On to Tucker…

Tucker is doing ok. We are on weekly chemo schedule, Tucker’s home nurse comes over every Monday morning  and pulls Tucker’s blood so we can get blood counts- all of his levels have to be above a certain point in order for us to have chemo the next day. His counts on this Monday were ok- not great, but he’s been worse and they were just high enough to pass counts. We are currently on week #65 ish of treatments…. We have like 120 ish weeks total… we are about half way done with treatments- I had very split feelings on this… my emotions were like- YEAH, HALF WAY DONE….. OH MY HECK ONLY HALF WAY? WE HAVE DONE THIS MUCH AND WE ARE ONLY HALF WAY?! YOU’VE GOT TO BE KIDDING ME! YEAH WE SURVIVED HALF WAY! See all the highs and lows? Welcome to my life…. Please feel free to dish any sympathy out to my husband Justin who has to deal with my crazy every day- LOVE YOU HONEY!

We did chemo today, he got Vincristine and something else that starts with a “C” and ends with “Toxin” I can’t quite remember its name and I know I couldn’t spell it right anyways….. he is at only 75% strength of chemo dose because his body and blood can’t handle 100% strength…. Every time we raise his chemo strength his blood counts crash and it delays chemo & makes him sick. 

OUR BIG CELEBRATION TODAY-- BIG news for today…. The ONE thing that was different that brought tears to my eyes…. Tucker decided today that he doesn’t need to numb his skin, no cream, no freezing stuff, on his skin above his port site before they poke him. This. Is. A. Huge. Deal. He is no longer my little 4 year old boy afraid of needles and pokes- he can do it without any help. *sniff* my little baby…. All grown up….

Ah dang, I’ve got tears in my eyes again…

Anyways…

First you have to understand what a power port is… A power port (Wikipedia definition) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".  

So for most of the cancer kids, they get this port put in and it lays right below their skin, so instead of “fishing” for a vein- which we all know can be painful- they install this little port and that is exactly where they poke the needle every time- no fishing, no guess work- its just right there. Well before we get up to the hospital, we put a numbing cream on his skin so he can’t feel the initial “poke” of the needled, we also do this every Monday morning before his nurse comes over to take blood. Most parents/kids do this…..prepare the skin for the poke-  from dealing with kids and needles at such a young age its just better to get rid of the little poke they may feel all together and that takes a little more fear out of the whole process, any little bit counts especially when they are that young. Well today Tucker said he didn’t need any cream *sniff*… he was big enough to handle it without cream *sniff, sniff*… and he couldn’t figure out why me, and all the nurses up there and his doctor were making such a big deal out of this. They were all clapping and congratulating him and we were all just so happy, we all knew what a big step this is for a kid…. And he was just SO cute. And I just sat there and cried, my little baby…. Not afraid of needles, he can handle the poke now. About a year ago, he still had to hold my hand for the poke, then he stopped holding my hand…. And now, no cream- where has my little boy gone?

Anyways, I have lots more to say but I had better wrap this up, its getting long. Please forgive me for my delay in writing a post about Tucker… I promise now to keep it up, you all love him and its important to keep you all up to date on his progress.

We are half way through… Hell yeah… we made it half way….. the 2nd half had BETTER be easier than the first.

Love to all

My-baby-boy-is-growing-up, Amber

My-wife-is-a-tad-crazy-&-super-hot, Justin (yes yes, I wrote the post, not Justin…. We’ll see if he even notices I wrote that…)

Hold-the-cream-I’m-a-big-boy, Tucker

Getting Measured

Hold The Cream Please

Best Doctor ever Dr. Affify

Best nurse ever.....Trisha

1 Year or 7 !

A YEAR or 7!

Please fill in the blanks below…

Wow, its been:
a) 1 year since Tucker relapsed
b) 7 years since Tucker’s first cancer
c) A lot of years since mom’s hair started going grey
d) All of the above.

I can’t believe it. Time has sure flown by.
It feels like so much more time has passed since we heard the heart-stopping news of
a) Your son has cancer again- this time in his spinal fluid & brain
b) Your son has cancer
c) “Mom, your grey hair is growing so much faster”… (gee, wonder why).
d) All of the above.

So many highs and lows, so much good and so much bad, I’m so grateful for:
a) Talented & wonderful Oncology doctors at Primary Children’s Hospital
b) Kind & warm nurses in the clinic.
c) Hair dye that is inexpensive & covers the grey
d) All of the above.

I look back on the:
a) Past year
b) Past 7 years
c) Past hair color choices I’ve made
d) all of the above
…. And I think to myself- wow I feel:
a) So old & tired
b) SO MUCH love for friends & family
c) Like grey hair should come back in style- it would be cheaper for me.
d) All of the above

I just can’t imagine what our life would be like had Tucker’s cancer not come back. I think back to the 3 years he was in remission from his first cancer and I feel like I really took that time for granted. I should have done more, I could have done more- but never ever did I expect for us to go through this again- but you never really see these things coming. We were sure blessed with a child who:
a) Can take this cancer- again- & kick its butt-again.
b) Laughs & smiles daily & is so grateful for life.
c) Doesn’t laugh- too much- when he spots mom’s grey hairs..
d) all of the above.

There are no words out there to tell all of our friends & family how much your love and support means to us. We never, ever would have made it this far without you. From the perfect stranger who I will never meet- to my friends & family who have been there from day 1 of 1st cancer over 7 years ago, to all of you I say:
a) Wow- you are all so amazing- how did I get so lucky?
b) You are wonderful and we are so grateful for everything!
c) Come on, go grey with me!
d) All of the above… (ok, I know “C” won’t float..LOL)

I have been having a hard time this past month with our year anniversary coming up- I didn’t really realize that’s what was wrong with me until just one day it hit me- ITS ALMOST BEEN A YEAR or 7, depending on what cancer anniversary we are celebrating. What would our life been without cancer:
a) Stress free & full of butterflies and rainbows
b) Cheaper
c) No grey…
d) all of the above (except C… I don’t think I would have gotten away from the grey… maybe it wouldn’t’ have grown so fast though without the cancer stress LOL)

I know this is an odd post… but I had a dream about how I wanted to write this (yes, I type in my dreams.. I’m so weird)…. And every statement and point that I wanted to make applied to more than one cancer.
In January 2005 our life changed forever- my little 4 year old started the battle for his life- In January 2010- our life changed forever again- my BIG 10 year old continued the battle for his life. I never could have made it this far without:
A) The most amazing husband & partner ever, thank you Justin for being so wonderful.
B) All the angels who have come into our life- we have angels that we have never even meet! Angels from as far away as Alaska have made an impact in our life.
C) Sales at Wal-mart on hair dye, thank you.
D) All of the above- and more, much more.


All the answers were D in case you were wondering
We are gearing up for another chemo filled year, and I’m so grateful to have you all here with me- even if you not “here”. We feel your prayers… we feel your love- keep it coming.

Happy anniversary… 1 year or 7 years… its an awesome anniversary as long as Tucker is here, battling the cancer- I’ll take every single cancer anniversary coming our way. We will beat this- we will win this, we will celebrate every year, celebrate life.
Here’s to Tucker.
WAY TO GO MAN, KEEP IT UP!
We love you-
Love mom & dad-
Amber & Justin.