Meet Bob...

Today was a back poke day- its good and bad. Last time we did a back poke (aka: spinal tap chemo) it didn't go so smooth..... so i was a little anxious about todays back poke. Well, honestly i'm anxious every time we go up there... it just seems that something new comes to light every time we cross that threshold into the clinic... and today was no exception. His blood counts were pretty good considering... he doesn't need a transfusion and has a decent enough immune system to go to school tomorrow if he wants to. The "new" thing was Dr. Afify has decided that since Tucker's leg pains have not gone away they need to take that a further step and get an MRI done on his hips and knees. This will show all sorts of fun things- they are going to mostly "zoom in" on his bones to see what could be going on. She said there are a few things the chemo and the high dose steroids could do to your bones.... and before we do another round of high dose steroids we need to rule out that its not the thing hurting his bones/legs.....

in light of Tucker's history..... and things tending not to go smooth or in a normal direction.... i feel very anxious about this bone scan thing they are going to do- i'm pretty sure they are going to find something crazy like he has gorilla bones instead of human bones....or that he was actually crafted out of popcicles sticks & super glue.... because that is just the type of kid that Tucker is. They are thinking we will get that done next week when we go in for another round of admission chemo for 5 days.

But the highlight for today was Tucker had a great "drug-trip" during his spinal tap... and this is one of the things i look forward to... when he comes out of the drugs he is crazy, giggling... hallucinating... funny little child... those precious moments just warm my heart.. AND i actually happen to have a camera/video recorder with me.....hum..... Everybody want to meet Bob?

Hoppy Easter

Happy Easter day to everybody! I know its been a little bit since our last post and quite a lot has gone on. Where to start….. the exciting news is that this last week Tucker has attended school! Can you believe it? We talked to the doc’s about the possibility of him going back to school and they said it’s a great idea just as long as 1)his blood counts are good (and they were) and 2)Tucker feels ok with it- not just physically but mentally ok with it. The doctors expressed there concern over Tucker being treated different because he looks different, but let me tell you…… school was the best thing for Tucker. I was a nervous nelly on this last Wednesday because Tucker wanted to go SO BAD so I said- ok dude, here’s the deal I’m going to go and attend school with you and we are only going to stay about 1 ½ hours but I’ll be in class with you the whole time so if we need to leave earlier then we can. I was anxious because I didn’t want him to throw up in class, or have him hurting in class- but I had a plan. On Wednesday morning I got up at 6am and I went into Tuckers room & I poked him just enough for him to wake up and take a pain pill & anti-nauseating pill…. Then he went back to sleep for an hour. Then at 7am I woke him up again to take his normal pills. Now normally when his “normal pills” kick in its when his tummy starts to hurt and the nausea kicks in. So I figured if I got him up at 7, take the pills, give him an hour to get “sick” and get over it…. That would put us at 8am, and I was taking him to school at 9am. It worked like a CHARM!!!!! By 8:30am Tucker was up and good and not sick & ate & feeling good and ready to GO! School starts at 8:30 but his teacher and I both agreed that its better to bring him after all the kids are in there class and then she can prepair her kids for Tucker. When we walked in…. we by lucky chance just happen to meet up with his class in the hall way, but since they were in the hall way they all had to be quite. Can’t you picture 20 kids, in a line… TRYING to be quite- but just overjoyed that Tucker just walked in?! it was funny, they all looked like they had ants-in-there-pants standing there waving and waving… just itching to talk. It was funny. So we walked with the class out to room (they are in portables) and when we all got in the room they just let it all out… “HI TUCKER” came from every corner of the room as well as “I’M SO GLAD YOU’RE HERE! WE HAVE MISSED YOU TUCKER”… it was just AWESOME. Mrs. Shipman got the kids settled down in no time and I sat back in a chair just watching how this whole thing was going to unfold. Tucker & Jaron sat together, but “away” from the rest of the kids- oh and yes Tucker had to wear his big mask that was another deal I made with him…. You can go but the mask stays on unless the class is gone for lunch or recess- if the room is empty then you can take it off. So back to class- Mrs. Shipman got them all settled down and just got started on her day. Now let me tell you the moment that really choked me up…. They all stood and said the Pledge of Allegiance…. Wow, its something I haven’t seen or had to do for so long… then to see Tucker standing and reciting the pledge with his hand over his heart- it was so normal… he was, well its just hard to describe, but I sure had a hard time not crying. I just want this “normal” for him so bad, and here it was unfolding in front of me- I wanted Tucker to be “pre-sick-Tucker”…. And here he was acting like nothing had changed. It was just, one of those moments I’ll never forget. After the pledge Mrs. Shipman tried really hard to get the class to work on some spelling or something like that…. But they were all fidgeting and whispering (not the norm in her class)- so this teacher being completely IN-TUNE with her class stood up and said- Ok, this isn’t going to work- everybody wants to talk to Tucker & I’m sure you all have a million questions- so everybody stop what your doing and lets talk to Tucker.

Have I mentioned that she is the best teacher ever????

I just kinda chuckled, and all the kids were so excited- so I had Tucker come and sit next to me so I could help answer questions and Mrs. Shipman said “ok, if you have a question for Tucker raise your hand and ask him.” This was SO fun. These are “kid questions” from the 4th grade- they ranged from “How are you feeling?” to “what do you hate the most?” and “how come you can come to class now but you couldn't before (who’s ever kid that was, was a seriously in tune smart kid)… and my favorite question was “what food do you get to eat up at the hospital?” LOL. So after the kids got all of there questions out of there system she got them all settled back to work- but it just happen to be pirate week in class so the next “activity” was Paint your Pirate.

We only stayed for 1 ½ hours, and that was perfect. Tucker was tired. After he was done painting his pirate we left. Tucker did great but he slept the rest of the day when he got home. So that day went so good that I gave him the option of returning the next day to school and staying a little longer if he would like but this time I wouldn't attend with him. I would drop him off and I have arranged with another kid in Tucker’s class, mom, to pick Tucker up at 1 or whenever Tucker says “I’m done”- which ever came first. So I followed the whole “plan” that I mapped out earlier with the pills and such & I packed him a lunch and sent him off to school! He attended Wednesday, Thursday & Friday!!!!!! He didn’t go for a full day, we are not to that point yet… but I think we may get there yet.

Last Tuesdays chemo was not to bad or hard. The only thing that was unexpected was that Tucker needed another blood transfusion. Blood transfusions turns a 2 hour appointment into a 9 hour appointment. Justin took him to it and I went to work, I guess they just sat back and played Xbox & watched movies the whole time. In fact Tucker had such a great time he asked me if on this next Tuesday appointment if Dad could go with him again……… hummmmmmmmmmmmm…. Its hard for me to not go, but I can live with it. Justin just has this different way of handling Tucker and dealing with stuff. I know Tucker wants me up there, but maybe he is just really enjoying some “guy time” with dad.

I have lots more to say but its late and I want to get this posted.
Love to all Amber, Justin & Tucker

Justin & Amber Karleen (Amber's mother in law) with the 3 boys, Tucker, Jaiden and Jaired

Tucker Easter Egg Hunting

Tucker on Tuesday Chemo getting blood

Tucker with a HUGE therapy dog

Tucker eating at Red Robin's on Friday with cousin's Aspen and Autumn

Blood Transfussion on Tuesday April 19, 2011

Teacher Feature

Tucker's Teacher won this week's "Teacher Feature" award from KSL Radio!
http://www.ksl.com/index.php?nid=191

KSL Newsradio and Zions Bank are proud sponsors of "Teacher Feature". In its sixteenth year, "Teacher Feature" highlights outstanding teachers throughout the State of Utah. Winning teachers are announced each Tuesday morning on KSL Radio's Grant and Amanda show.

Each teacher is honored with a plaque from Zions Bank, an overnight stay at Anniversary Inn, a gift certificate for dinner at the beautiful La Caille Restaurant, and a pair of season tickets from Hale Centre Theater, West Valley . All winners are invited to attend an end of the year banquet at La Caille in their honor

Roxann Shipman - Quest Academy
April 19th, 2011 @ 12:36pm
My son, Tucker, her 4th grade student was just diagnosed with a relapse of his previous cancer, Leukemia, on January 29th. We were admitted to Primary Children's Hospital for 12 days. Mrs. Shipman came up to the hospital multiple times to be with Tucker (after school & on weekends), to go over home work, to read to him, to hold his hand- anything and everything she could do for her student she did and is continuing to do. She has requested to continue to be his teacher even though Tucker cannot attend school. She brought up a web cam and microphone and set him up with Skype (and her classroom also) so Tucker can "attend class" at home. She is also coming over after school & weekends, on her own time to tutor/teach my son. She is going above and beyond her duties as a teacher to teach my son. And more than that, she is educating her class about Tucker and making this Skype sessions a "normal" part of class because all her students were close with Tucker. So not only is she helping my son, she is helping all the kids in the class deal with this problem in a positive educational light.

She is amazing and deserves this award.

Thank you.

-Amber Dickamore

24 Hours

24hours April 12, 2011
Hour 1 officially started at 7pm tonight.. *sigh* only 23 hours left.
I should start out more with hey, what's up?? What's going on? Well we have started the next phase of Tucker journey through chemo, and this phase kicks off with a bang- this is a 24-straight hour infusion of the chemo called METHOTREXATE. We have had this certain chemo before, but it was NOTHING like this. We have never ever had a 24 hour straight infusion of chemo before…. And this chemo showed up in the LARGEST IV bag I’ve ever seen….well I take that back, the largest IV bag of Chemo came with the world LARGES IV bag of normal IV fluids (see pictures). They are HUGE! I never knew they could come in XXXL sizes.

Well, but I’m getting ahead of myself. The day started out with surgery. Tucker had his pick-line removed and his official PORT put in *HAPPY DANCE*. The surgery went off without a hitch, Tucker did great. He was quickly transferred from surgery recover to the Oncology ward. When he started to really, really, wake up from his surgery THAT didn’t go so good and he was in a lot of pain. But we had the doc’s right in the room with us and in no time they had doped him up pretty good- but the pain got a little intense & out of control, I think he was past the point of relaxing into the morphine and his mind wouldn’t let his body relax- so they gave him a LARGE dose of IV Adivan- now when this worked it was like everybody in the room had a big sigh of relief. It was just what he needed, his BRAIN needed to relax- he was like just freaking out so much he couldn’t “feel” his morphine, but as soon as that Adivan hit, he immediately relaxed and THEN the morphine worked and he was fine. Lemme tell you- in between that time of him waking up and us getting his pain under control with the Adivan, I think I aged 30 years! I know I grew a lot more grey hairs today. This was Tucker’s first “trip” on Adivan, and it was a memorable experience. Now for the record I don’t think his little drug trip would have been SO intense if it hadn’t been mixed with A LOT of morphine.. but it was and OFF he flew!

Quotes from Mr. Tucker during his drug trip:
• Mom, why is there a hippy trailer by the door? It looks like the Scooby-do van, but it’s a trailer.
• Mom, why are we at your work?
• Mom, you are talking in a weird voice, you sound like a cartoon.
• Mom, everything is so funny, hey I bet your jokes would be funny right now.
• Mom, I feel so weird---wwwweeeeeeeeeeeeeeeeeeeeeeeee

I just said Tucker, sit back and enjoy your prescribed controlled drug trip… he said “But mom, I don’t want to fly right now, maybe later, my wings are tired”.

He is doing much better now, and the chemo is well underway. The only hitch to the night is… each chemo comes with certain tasks that Mr. Tucker has to do while getting the chemo, on this one he has to- no questions and no getting out of it- HAS TO pee every 2 hours. They have to keep an eye on his kidneys because this large dose of this chemo can do some damage, so they test his pee every 2 hours and if anything comes back abnormal they can adjust it quickly, probably in the form of more meds to counteract the chemo, we don’t get to ever stop the chemo. I bet most of you are thinking- Peeing every 2 hours- that doesn’t sound so bad…….

YA RIGHT- he hurts, he wants to sleep- and he has inherited a lovely little WAKE-ME-UP-BEFORE-I’M-READY-AND-YOU-ALL-DIE type of disposition- I believe he got that from my little sister, Tamy. I remember trying to wake Tamy up when she was a kid and the only way to , safely, wake her was to quietly sneak up to her……. Then quickly poke, pinch, shake her really hard and then turn around and BOLT out of the room to a safe distance and then SWEAR it wasn’t me- it was CHARITY who woke you- I swear! ( I always knew it was Amber cause my dog would bite her....lol Tamy)

So I’ll keep you all updated on how the peeing / taking my hands into my life to wake up my child, goes as our days up here drag on. Right now its only 10pm and I haven’t had to run for my life, yet….. eerrr, I mean, wake up my son.
Tomorrow, Wednesday, my angel is coming up to hang with Tucker- Karleen, the best mother in law a girl could ever dream / ask/ beg to have. She has come up here to sit and hang with Tucker, more times than I can count. I’m so blessed to have married Justin, and then got this wonderful selfless woman who will sacrifice anything she has to help us in our time of need. Thank you Karleen, you’ll never know how much you mean to us.

Here are some pictures of the world's largest IV bag and chemo bag and a few other pictures from today.

Love to all, Amber…. Justin & ….. Tucker.


Pre-Op Tucker relaxing before Surgery Tucker Sleeping after surgery

Sleepy Tucker with his nifty new port

Picture of the LARGEST chemo and IV bag

Tucker sleeping while getting started on the 24 hour chemo (the black IV in the back is the chemo)

Sit Petechia, Sit! Good Boy!

UPDATE: We realized we have spelled Petechia wrong all this time. *Jeeze* But just so you still find our post the wrong way to spell Petechia is Pitikia....but I need to have it in here so you can still find us....here is a few more just in case.....pitikia, pitikia, pitikia, pitikia, pitikia

Have any of you heard of the word Petechia? Now, this is a word they you may here in circles… groups of people talking… “ I know my cousins sisters boyfriend’s little brother had Petechia! “ At first your kinda stunned, what is that?! Its sounds like… well, it sounds like some fruity drink, or maybe it’s a new breed of dog?

You have a Lab? Well check out our cool Petechia breed of dog! They are super fast and the fur is covered in purple spots!

Petechia (GOOGLE’s definition) Small purple spots on the body caused by broken blood vessels.

Petechia (mom’s definition)- thousands of small little bruises that look like what a little red rash would look like, but not red , instead purple & they can be on any part of your body that you have put even the slightest pressure on- like the chain on your neck from your necklace, or glass frames resting on your face.

Petechia happens at any time, it’s a form of bruising. But MOSTLY it happens when you don’t have any platelets left in your blood cells. Platelets are in charge of the “clotting” in your body. When you have a cut, the platelets come to the rescue and stop the bleeding. Did you get smacked by a baseball and now you have a huge bruise? Platelets are what cause the bruise; it’s your body’s “healing” stuff, its your natural superglue.

We knew on this last Fridays appointment that Tucker’s platelets were crashing. They were taking a huge nose dive in the downward direction but he hadn’t quite hit “transfusion” zone yet. So we made an appointment for Monday (yesterday) to recheck blood counts (they knew by then he would need a transfusion) and go over pain management (I wasn’t giving him enough pain meds) and look at his pick line (that is draining out of his insertion site) so we had multiple problems to cover needless to say. But hey, we weren’t admitted and that’s ALWAYS the bright side. Tucker’s platelet count (a normal CBC) showed that he well into the “NEED TRANSFUSION” zone. But we had an appointment for today (Tuesday) for chemo so they got the order in for a bag of platelets to be ready for us first thing this morning.

Now lets circle back to Petechia- the small spots of bruising…. To the “rash” looking like symptoms. Maybe some of you can look at your child’s arm and think “maybe maybe maybe…this is pitikia?”…. so I’m here to help you out with my very photo genetic son. After our Monday appointment and the doc’s had me double up on the dose of morphine for Tucker- Tucker got the “itches” really REALLY bad. Have you ever had the pain meds itches? They SUCK. They are ALL over your body and no matter how much you itch and how HARD you itch they don’t go away. So tucker started to scratch like there was no tomorrow, but he looked at me with a smile and said “even though I itch SO BAD, my pain is gone so I’m OK!”. Now think about this- if you have no platelets, and you’re at the point were a necklace chain could leave a bruise- think of what major itching would look like? Ya, its bad. I have provided pictures. Just keep in mind when you see Tucker’s- ahem- “little” bruising, that the bruises don’t hurt him. This is seriously one of those situations where it LOOKS worse than it actually is.

He got a bag of platelets first thing this morning so they should start to heal everything up.

Some chemo appointments are better than others, today I would rate us on the “worse” side when you take into account puking and pooping and pain and spinal tap- ya, today was not a winner. It just down right sucked- BUT we just keep reminding ourselves- we were not admitted, so its not THAT bad….we were not admitted so it COULD be worse. We are home & just very very tired and poor Tucker looks like he has been put through the ringer. Its days like this that was just awful, that I’m amazed at my son’s strength… I’m just at a loss for words to accurately explain how he can handle all of this, and then sweetly ask me in-between puking his guts out while sitting on the toilet with diarrhea (it was a BAD night), if I could read to him his new book his teacher, Mrs. Shipman, brought over to him while he was getting sick. So I sucked up strength, determined to be as strong as him, and sat by him on the bathroom floor & read to him while he was so very very very very sick. It helped, I think. I just had to read very loud so he could hear me over his puking. Yes, Tucker is on heavy anti-nauseating meds, he’s on very very very heavy anti-nauseating meds…. But sometimes they just don’t kick in at the right time, and honestly- you just feel better after you puke. He is resting now, feeling much better. Love to all, Amber, Tucker & Justin

Tucker's Petechia
 Petechia

 Petechia

Platelet Transfussion, Yes it is yellow blood

Chemo today, Tucker taking a nap