I long for the day that the normal chemo “routine” kicks in (if there is such a thing)….. no more surprises, no more “gasp’s” from the Doctors, no more “WOW, REALLY? WOW!” from the Doctors… no more “I’VE NEVER HEARD OF A CASE LIKE THIS BEFORE”… from the Doctors…. Why can’t we just have a routine appointment without the shocking surprised reaction we get from the doctors that treat tucker? So I took Tucker up for chemo yesterday and we had a brand new doctor, well- he’s not “new” by any means, but I have never meet him or even seen him before until today. For the sake of this email let’s call him Dr. Newbie. Before I get on to Dr Newbie, first on our short walk from the car, to the elevator in the hospital, up the elevator to the office Tucker almost passed out! He scared me to death! But he didn’t pass out, just go really close- he was like “mom, what’s all these black spots I’m seeing?”…. but I’ll get around to that. So back to Dr. Newbie- He came in the room and like normal wanted to go over tucker’s meds, Well I’ve dang near got them all memorized so I’m reciting the list in my brain, I get down to the Levothyroxine (thyroid pill) and he said “oh? Does Tucker have a problem with his thyroid?” I said, No- well, yes, I mean that’s where the tumor was. *BLANK LOOK FROM THE DR* I said, ummm…. Tucker grew a little tumor on his pituitary gland in his brain… *BLANK LOOKED REPLACED BY CONFUSION*….. I said, You know….. Cancer? In his spinal fluid?? At that I got a “Ya, that’s right… sure”, (but he could have been faking it) …… I said…...well that cancer clustered up on his gland and grew a tumor….
Dr Newbie- What?! Really? WOW! I’ve just never heard of that before!!! So I get it he’s taking the Levothyroxine to help heal that glad! Wow! I’ve never had a case like this before… ect ect ect…..
Me *UNAMUSED LOOK WITH THE FEELING LIKE THIS IS GOING TO BE A LONG DAY, I’M ONLY 3 PILLS INTO THE FIRST LIST* *ahem* so… anyways He’s also on 2 big does of antibiotics to kill off the Mycobacteruim he had growing but I can’t remember there….
Dr. Newbie- Wait wait wait, surly you didn’t say “MYCOBACTERUIM” I’m sure its not that, I bet its something else- it just couldn’t be that! At which time Tucker piped up “YA, I grew a Mycobacteruim Doc Afify told me I did!”.
Dr. Newbie- How about I go find out what really was going on and then I’ll let you know the name of the meds he’s on… *walks out of the room*
Me *STILL UNAMUSED LOOK ON MY FACE- WITH A SLIGHT EDGE OF- YOU THINK I WOULD BE LYING ABOUT THIS CRAP?*
Enter Dr. Newbie 10 minutes later: WOW WOW WOW YOU WERE RIGHT!!!! It was a Mycobacteruim! WOW! You just never hear of that! Wow, wow! I see you saw Dr so&so..(The Director of Institute of Disease Control, but I can’t remember his name.) WOW that is just AMAZING!
Tucker said “see I told you.” I said *WITH A LOOK OF—YOU GOT TO BE KIDDING ME--- ON MY FACE* *please use heavy sarcastic tone while reading* Ya, I wasn’t making this up…. But if it makes you feel any better I’m getting used to your reaction, from what I gather its very rare and Tucker grew this bug, lucky us, I’m so proud. Dr. Newbie went on and on about “wow this” and “really?” that…. Let me just toss this out there to all the doctors that could possibly be reading this- I would suggest to you in cases such as this, that you save your shock, surprise, amazement, and what could easily be mistaken as admiration- for when your ALONE. It doesn’t make me feel comfortable knowing that Tucker is making his own path in the thick jungle of cancer, instead of taking the paved road. All in all Dr. Newbie was very nice…. Just very, surprised and very vocal about his surprise. They pulled Tucker’s blood out and ran counts; turns out his red blood cells were like GONE BABY GONE… so he needed a transfusion. This was why Tucker almost passed out in the elevator, Red blood cells give you energy and he had ZERO ENERGY. I love the blood transfusions but they take FOREVER to get. Tucker got 2 big bags full of A+ BLOOD! I’m so proud of my child… getting an A+ like that… *sniff* I always knew he was smart…
Anyways, he didn’t get his two A+ bags until 6pm and each bag takes 1 1/2 hours to transfuse. So they stuck us in a room in the Oncology ward to hang out while he finishes up. By the time it was all said and done….. I showed up with a pale white ghost… & left with a red cheeked much better boy… at 11pm. It was a long night! But we finally made it home and in bed. Love to all- a very tired Amber, Justin & Tucker
ARAC Chemo after all his IV's, look how swollen his face it. This is when we were admitted for chemo ARAC last week. This was the morning after his blood pressure crashed. He also has a fever see how red his face is.
Thursday, March 31, 2011
Friday, March 25, 2011
Its going.. its going.. its……… Is that a football??
We are still at the wonderful, awesome, amazing (umm.. to thick hu?) Hospital. We had a choice yesterday to go home or stay. I had the doctor up in our room yesterday afternoon and we discussed the pros & cons to staying or going. The biggest PRO being- we would be HOME- The biggest CON of staying would be we would not be HOME. Its pretty basic reason, if we stay they can control Tucker’s pain better, and if we leave then I’D have to do it at home. Well Tucker’s pain had been pretty freaking hard to control in the hospital, I didn’t feel quite comfortable taking him home. I said, lets just stay one more night and get him under control first and then we will head out in the morning.
WOW- THAT SOOO WAS LIKE THE BEST GAME PLAY DECISION I EVER MADE! Starting at about 9pm last night the game changed, Tucker threw a curve ball. Tucker changed up the game, first it was baseball, and then he decided right in the middle of an inning- lets play football and we were all left to scramble (ha! Football term!) After him in a panic to keep up with his new game. Tucker was getting worse! I had the feeling like… it started out great… Tucker great hit!!! You smacked that baseball dead on! Look at that long drive hit (baseball term?) to the outfield….. its going… its going… its……. HEY, WHERE DID THE FOOTBALL COME FROM? HURRY QUICK! HE’S MAKING A PASS- TACKLE HIM!
His fever spiked super high; his pain was un controllable and the kicker, his blood pressure dropped to 82/42!! It took some education from the nurses today to tell me just how bad the blood pressure thing is- heck, I’m no nurse…. All I know is you need to have a blood pressure to be alive- tucker has a blood pressure? Great! He’s alive! I kept hearing the nurses talk about giving Tucker a Bolus…. A what now? A Bolus. What the freaking toothpicks is a Bolus? Well, they held one up to me- it’s a huge, gigantic, over sized IV bag of fluid- this thing was enormous! FLAG ON THE PLAY!! They hooked it into to Tucker and put it on a “fast push” that pumped all that fluid into his body in less than 20 minutes! OH AND IF THAT’S NOT ENOUGH they had to do it 2 times the first bag wasn’t enough?? ! Somehow that bolus thing helped stabilize his blood pressure- ALL the “referees” got together and the decided to wait and see if Tucker stabilizes and sure enough around 2am he finally fell asleep, his blood pressure rebounded, his pain under-somewhat- control. It was a really long game last night with too many players on the field and no beer in the concession stand.
When we woke up this morning Tucker looked like he had been put through the ringer- he looked like he was on the losing football team and he was the quarterback that kept getting sacked by a 300lb giant! Because of all the major fluids from the night before (oh did I mention that he had 5 other IV bags of antibiotics along with Bolus?)….his whole face and body has swollen up. He looks like…. Well, like he just drank way to much water! Or that he had a bee sting and his face is swollen up! His eyes were almost swollen shut, he little cute fingers turned into chubby fat sausages… (they were cute)… and then it was like the TIME OUT was over- and on with the HOW MUCH CAN YOU PEE- game. Oh MAN…. A LOT… he can pee…. A LOT. I hope he realizes when he’s 18 years old & reading this- how much I love him, but sometimes you just gotta point out some of your “accomplishments” and tucker- you can sure pee a WHOLE lot AND I’m proud! LOL
As of right now he is doing much better, fevers have broke and pain is under control. They are keeping us one more night because we had such a bad night last night, tucker just needs to be kept under observation that much longer. Better safe than sorry- I get sick to my stomach thinking how close to taking Tucker home we had gotten yesterday- I just can’t imagine where we would be today had he not been surrounded by all these wonderful nurses at the time his blood pressure crashed.
I apologies to all the sports fans for using sports lingo- I definitely have no idea what I’m say- but it sure sounds good.
Love to all, Amber (cheerleader), Tucker (quarterback), & Justin (Linebacker? Fullback? Running back? LOL I have limited football terms in my head- OH I know, the COACH! )
WOW- THAT SOOO WAS LIKE THE BEST GAME PLAY DECISION I EVER MADE! Starting at about 9pm last night the game changed, Tucker threw a curve ball. Tucker changed up the game, first it was baseball, and then he decided right in the middle of an inning- lets play football and we were all left to scramble (ha! Football term!) After him in a panic to keep up with his new game. Tucker was getting worse! I had the feeling like… it started out great… Tucker great hit!!! You smacked that baseball dead on! Look at that long drive hit (baseball term?) to the outfield….. its going… its going… its……. HEY, WHERE DID THE FOOTBALL COME FROM? HURRY QUICK! HE’S MAKING A PASS- TACKLE HIM!
His fever spiked super high; his pain was un controllable and the kicker, his blood pressure dropped to 82/42!! It took some education from the nurses today to tell me just how bad the blood pressure thing is- heck, I’m no nurse…. All I know is you need to have a blood pressure to be alive- tucker has a blood pressure? Great! He’s alive! I kept hearing the nurses talk about giving Tucker a Bolus…. A what now? A Bolus. What the freaking toothpicks is a Bolus? Well, they held one up to me- it’s a huge, gigantic, over sized IV bag of fluid- this thing was enormous! FLAG ON THE PLAY!! They hooked it into to Tucker and put it on a “fast push” that pumped all that fluid into his body in less than 20 minutes! OH AND IF THAT’S NOT ENOUGH they had to do it 2 times the first bag wasn’t enough?? ! Somehow that bolus thing helped stabilize his blood pressure- ALL the “referees” got together and the decided to wait and see if Tucker stabilizes and sure enough around 2am he finally fell asleep, his blood pressure rebounded, his pain under-somewhat- control. It was a really long game last night with too many players on the field and no beer in the concession stand.
When we woke up this morning Tucker looked like he had been put through the ringer- he looked like he was on the losing football team and he was the quarterback that kept getting sacked by a 300lb giant! Because of all the major fluids from the night before (oh did I mention that he had 5 other IV bags of antibiotics along with Bolus?)….his whole face and body has swollen up. He looks like…. Well, like he just drank way to much water! Or that he had a bee sting and his face is swollen up! His eyes were almost swollen shut, he little cute fingers turned into chubby fat sausages… (they were cute)… and then it was like the TIME OUT was over- and on with the HOW MUCH CAN YOU PEE- game. Oh MAN…. A LOT… he can pee…. A LOT. I hope he realizes when he’s 18 years old & reading this- how much I love him, but sometimes you just gotta point out some of your “accomplishments” and tucker- you can sure pee a WHOLE lot AND I’m proud! LOL
As of right now he is doing much better, fevers have broke and pain is under control. They are keeping us one more night because we had such a bad night last night, tucker just needs to be kept under observation that much longer. Better safe than sorry- I get sick to my stomach thinking how close to taking Tucker home we had gotten yesterday- I just can’t imagine where we would be today had he not been surrounded by all these wonderful nurses at the time his blood pressure crashed.
I apologies to all the sports fans for using sports lingo- I definitely have no idea what I’m say- but it sure sounds good.
Love to all, Amber (cheerleader), Tucker (quarterback), & Justin (Linebacker? Fullback? Running back? LOL I have limited football terms in my head- OH I know, the COACH! )
Thursday, March 24, 2011
Won't Miss This
Today is the last day of his 3 day chemo – THANK GOODNESS- this chemo, called ARAC is horrible, nasty, mean, and painful. They have to give him a FULL IV bag (see picture) of this icky stuff every 12 hours for 48 hours and it takes 3 hours to infuse. I mean, doesn’t that just sound horrible enough? But NOOOOOOO… the side effects wins the “what’s more horrible” award in this contest. This stuff causes full body pain-don’t we all just flinch when we hear that?- and Tucker can sure feel that pain. He is getting full doses of morphine to try to keep the pain down and it does take the edge off for a little bit. Everybody who has kids- how does your child act when they are sick and in pain? Most of you are thinking THEY ARE MEAN, GRUMPY, SNARLY, & DOWN RIGHT UNPLEASANT to be around, that is a natural reaction to kids when they are in pain. Sooooooooooooooooo…. that should give you some hint as to what our time up here has been like. That’s how my sweet (snarly), lovable (growling), snugly (mean) , little angle (devil) child is today. But what do we mom’s do in this situation? We love them even more- we hug them more, we kiss them more, we hold their hand more, we just sit and pray more- we do more of the little things that we know won’t immediately help, but that is ALL we can do- so by damn, we will do it to the absolute best of our mommy abilities!
A lot of you knew that we were planning on Tucker getting his pick-line out on Tuesday and getting a port put in….. but that didn’t happen. We waited and waited but they had so many emergency surgeries (aww, sad!) that a non emergent surgery like Tucker’s got bumped so far back that we elected to try again in 3 weeks after he recovers from this round of chemo. So in April sometime—cross your fingers! Ports are awesome and we are excited for it.
Tucker’s friend in his class did this awesome thing, he started his own fundraiser. Jaron went out in his community and started selling pizza’s to raise money for Tucker. How sweet is that?! He said he got the idea when he went to the blog and saw the “Team Tucker” stickers and he wanted to do something like that. One thing lead to another and before we knew it KSL channel 5, was interviewing Jaron & Tucker. It will air on Friday the 25th at 6:50am.
Jaron, I was told by your mom that you read my blog all the time- You are so special! You’re amazing and your kind act was so selfless! You’re very caring, and truly did an RANDON ACT OF KINDNESS! Your parents are so blessed to have a special little guy like you in their life. I will never forget you and what you did for Tucker. Thank you Jaron, thank you thank you thank you…..
As for this day being our last day up here- we are scheduled to release this afternoon- it may not happen…. One Doc says lets keep us another night to watch Tucker and get a better manage on his pain, and another one says you can go home but you’ll have to manage his pain on your own… I sense I have a choice here, and I’m not sure exactly what I’m going to do. I’ll need to talk it over with Justin and see what he thinks & I’ll let you all know. I think mentally for Tucker the best thing is to go home, he really hates it up here, but in dealing with pain-the best place for him is in the hospital. We will just have to see.
Love to all- Amber, Justin & snarly-grumpy-Tucker-bear
Tucker and his Teacher Mrs. Shipman
Justin, Tucker & Amber
Ewwwww, Dad kisses.
A lot of you knew that we were planning on Tucker getting his pick-line out on Tuesday and getting a port put in….. but that didn’t happen. We waited and waited but they had so many emergency surgeries (aww, sad!) that a non emergent surgery like Tucker’s got bumped so far back that we elected to try again in 3 weeks after he recovers from this round of chemo. So in April sometime—cross your fingers! Ports are awesome and we are excited for it.
Tucker’s friend in his class did this awesome thing, he started his own fundraiser. Jaron went out in his community and started selling pizza’s to raise money for Tucker. How sweet is that?! He said he got the idea when he went to the blog and saw the “Team Tucker” stickers and he wanted to do something like that. One thing lead to another and before we knew it KSL channel 5, was interviewing Jaron & Tucker. It will air on Friday the 25th at 6:50am.
Jaron, I was told by your mom that you read my blog all the time- You are so special! You’re amazing and your kind act was so selfless! You’re very caring, and truly did an RANDON ACT OF KINDNESS! Your parents are so blessed to have a special little guy like you in their life. I will never forget you and what you did for Tucker. Thank you Jaron, thank you thank you thank you…..
As for this day being our last day up here- we are scheduled to release this afternoon- it may not happen…. One Doc says lets keep us another night to watch Tucker and get a better manage on his pain, and another one says you can go home but you’ll have to manage his pain on your own… I sense I have a choice here, and I’m not sure exactly what I’m going to do. I’ll need to talk it over with Justin and see what he thinks & I’ll let you all know. I think mentally for Tucker the best thing is to go home, he really hates it up here, but in dealing with pain-the best place for him is in the hospital. We will just have to see.
Love to all- Amber, Justin & snarly-grumpy-Tucker-bear
Tucker and his Teacher Mrs. Shipman
Justin, Tucker & Amber
Ewwwww, Dad kisses.
Wednesday, March 23, 2011
January 28, 2011
Tucker Will Be on The News!
Tucker is going to be in a story on TV this Friday at 6:45am- they interviewed me and Justin also, but I hope they kept it to just Tucker… or Justin
So anyways this Friday KSL, channel 5, 6:45am. http://ksl.com
So anyways this Friday KSL, channel 5, 6:45am. http://ksl.com
Tuesday, March 22, 2011
Admitted for 3 Day Chemo
Amber and Tucker went up to PCH today around 1pm today. Tucker was scheduled for surgery to put in his new port. After waiting for hours they found out there were a few emergency surgeries that bump them. Instead of waiting another few hours they decided just to wait to get it replaced in 3 more weeks after this set of chemo. His pick-lines are working great and are less work for Amber right now. He starts his 3 day admitted chemo tonight and hopefully if everything goes as planned (fingers crossed) they can go home on Thursday.
Sunday, March 20, 2011
Aloha!
Aloha! Wait… what?
Check list…
****Sunscreen spf50 (I burn easy, need to keep my whites extra white!), CHECK.
****Sunglasses- THE FUTURE’S SO BRIGHT, I GOTTA WEAR SHADES! CHECK.
****Extra flip flops in case I lose a pair playing in the ocean (and one pair to match each outfit)! CHECK.
*waking up to reality…? *sigh*….CHECK
We start our next 3 day in house chemo on Tuesday, as I was packing today I closed my eyes and I could almost pretend that I could hear the ocean & smell that coconut sun tanning lotion smell, Ahhh..maybe one day. We have had a fairly good week—it was so easy to pretend that nothing was wrong, so easy in fact that one day I almost forgot to give him his IV antibiotic (he got it, it was just really late). I know a lot of people have mentioned to me that its been a few days since I’ve posted or let everybody know what was going on, like I said- it was a nice week and easy to pretend that this whole thing wasn’t happening. Now I’m getting my mind set back into chemo mode (not that I was ever NOT in that mode, it was more like on “pause”).
Tucker has had a so-so week. He sleeps a lot, and he’s had a lot of pain in his bones. That’s a side effect of the neupogen. It just sucks. But we have great pain meds and if we keep on top of it then its not so bad. We will all be very grateful when we are done with the IV antibiotic! That is SUCH a pain.
This last week at work I almost worked a full 40 hours! I think I was about 2 hours short. I never could have done that without my friend Karyn helping me. Karyn has been my guardian angel since the day I meet her over … jeez, 13 years ago? (wow! That long?!). I meet Kar at my first job, Icon Health & Fitness, and we worked together for like 10 years and since then we have both got married and ended up buying houses about 2 or 3 miles away from each other… seriously, she is just right down the road, and THAT is a blessing . Karyn is Tucker’s “other-mom”. I never could have made it through Tucker’s first round of cancer without her, and here again with our 2nd battle, I couldn’t do it without her. Tucker has to have an IV dose of meds around 3pm each day… I’m at work and so is Justin- so I showed Kar how to hook our boy & take care of him and she takes him over to her house each day and between her & her kids they take care of Tucker and the BEST part is I DON’T WORRY AT ALL. It’s like when we are up at the hospital, I don’t worry about Tucker so much because he is in the best hands- it’s the same thing at Kars house. She is my guardian angel…we love her and her whole family. She is the type of friend that I know I can show up at her house ANY hour of the day for any reason and her house is open to us. I know I can call her up at the hospital at any hour and say simply “I need you here, now!” and she will stop what she is doing and run right up (yes, that has happened before!! AND her sister KYM- same thing, one of my best friends who has gone above and beyond for me & came running when I said ‘GET HERE NOW”). Kar & Kym, you will never truly understand how grateful I am, how grateful WE are that you are in our life. From the bottom of my heart, thank you.
Tucker felt up to having a friend come over and play. His great friend Jade came over and hung out on Saturday. They just kicked back and played games, they were so cute & had a blast! Then later that night Kar’s son, Joey, came over and spent the night with Tucker. So he has had a great friend weekend. Gotta get those in when we can!
The love and support that we have received thus far has been amazing & incredible! The well wishes and the FOOD we have been completely overwhelmed by. It absolutely astonishes me the kindness and giving nature of all our people in our life. I know we could not have done this without all of you and I hope & pray that every family with a cancer child has THIS kind of support and love that you all have shown to us. I have just been informed that one of Tucker’s little classmates has taken it upon himself to raise his own money for Tucker. When I found this out I broke into tears! I don’t have all the details yet, so when I do I will let you know what this little angel did.
Please everybody, I love the TUCKER’S TEAM tags, and then the TUCKER’S TAGS… please make sure you all get one. Every one that is sold is a support for Tucker. Thank you to ALL who have gotten one and have shown your support that way. Please pass the word and share this website. Also, if you know any child- or have heard of any family who has a kid with cancer please please please, go above and beyond to give them this blog address. My goal and hope is that one day my crazy ramblings will help another mom in my position. So please, share it! Pass it on! I have this need inside of me to help the other mom’s & dads. Maybe that is why Tucker got cancer again, maybe it’s so I can actively help more mom’s & dad’s out there who just don’t know what’s going on, but they are in the same “circle” as me. When I look back now at Tucker’s first battle I know what could have helped me was talking to another mom who went through this same thing, I didn’t get the opportunity to do so until after the fact- but there is such a huge difference in what we mom’s see- and how the doctors perceive the situation. So share it, spread it, support it. My dream would be to start up a support group. Maybe if enough mom’s & dad’s find out about this, it can happen. Please help to make it happen. They don’t even have to live in Utah- maybe you know a kid in Iowa dealing with this! It doesn’t matter; just everybody affected by this… maybe I can help. And if I can’t help, maybe they will get a good laugh at my crazy writings and feel comfort in knowing they are not alone.
I sure hope as we start our next set of 3 day in-house chemo, we are not up for anymore surprises. I looked at Tucker and said- OK NO MORE.. NO MORE SURPRISES… I’M GOOD- WE HAVE COVERED THEM ALL. He just looked at me and laughed. Now that I think back on that… his laugh was a bit evil… hummmm…..
One last thing…. my coworker Joell came one day and said to me- Amber, you know a great idea would be for Tucker to make a “Wish List” at Walmart.com, that way we don’t keep asking you ‘what is Tucker’s favorite things… what does tucker want… what does Tucker like…’ it will all be on there & then we can see what he has got or hasn’t got.” It was a stroke-of-brilliance!!! So sure enough I started a “wish-list” on Walmart.com for Tucker. I set it up and showed Tucker what to do & I explained it to him. His eyes got really BIG and he said “anything mom? I can choose ANYTHING?!” I said YES BUT LET ME CLARIFY, JUST BECAUSE YOU CHOOSE IT DOES NOT MEAN YOU WILL GET IT-OK?” he said ‘OK’ and went off on his “shopping trip”. So to my dear people reading this- if you want to get something personal for Tucker…. Please go to www.walmart.com click on “REGISTRY” at the top of the page select “wish list” then go to “find a wish list” and you can type either TUCKER RICKER or AMBER DICKAMORE hit ‘enter’ and you’ll have his wishes. Now let me make one thing clear- I didn’t give Tucker any limits as to what he could put on this list, so you’ll find items from $5 to $500…. LOL
So have fun with that! J
Love to all, Amber Justin & Tucker
Ps, while you’re shopping at Wal-Mart for Tucker, toss in a bottle of sunscreen for me…. Because one day when this is ALL OVER I’m taking the family to the beach! J J/K
March 8, 2011 Tucker at his oncology appointment and then getting admitted
Tucker getting his IV medicine at home
March 8, 2011 Amber & Tucker at Oncology appointment and then being admitted
Check list…
****Sunscreen spf50 (I burn easy, need to keep my whites extra white!), CHECK.
****Sunglasses- THE FUTURE’S SO BRIGHT, I GOTTA WEAR SHADES! CHECK.
****Extra flip flops in case I lose a pair playing in the ocean (and one pair to match each outfit)! CHECK.
*waking up to reality…? *sigh*….CHECK
We start our next 3 day in house chemo on Tuesday, as I was packing today I closed my eyes and I could almost pretend that I could hear the ocean & smell that coconut sun tanning lotion smell, Ahhh..maybe one day. We have had a fairly good week—it was so easy to pretend that nothing was wrong, so easy in fact that one day I almost forgot to give him his IV antibiotic (he got it, it was just really late). I know a lot of people have mentioned to me that its been a few days since I’ve posted or let everybody know what was going on, like I said- it was a nice week and easy to pretend that this whole thing wasn’t happening. Now I’m getting my mind set back into chemo mode (not that I was ever NOT in that mode, it was more like on “pause”).
Tucker has had a so-so week. He sleeps a lot, and he’s had a lot of pain in his bones. That’s a side effect of the neupogen. It just sucks. But we have great pain meds and if we keep on top of it then its not so bad. We will all be very grateful when we are done with the IV antibiotic! That is SUCH a pain.
This last week at work I almost worked a full 40 hours! I think I was about 2 hours short. I never could have done that without my friend Karyn helping me. Karyn has been my guardian angel since the day I meet her over … jeez, 13 years ago? (wow! That long?!). I meet Kar at my first job, Icon Health & Fitness, and we worked together for like 10 years and since then we have both got married and ended up buying houses about 2 or 3 miles away from each other… seriously, she is just right down the road, and THAT is a blessing . Karyn is Tucker’s “other-mom”. I never could have made it through Tucker’s first round of cancer without her, and here again with our 2nd battle, I couldn’t do it without her. Tucker has to have an IV dose of meds around 3pm each day… I’m at work and so is Justin- so I showed Kar how to hook our boy & take care of him and she takes him over to her house each day and between her & her kids they take care of Tucker and the BEST part is I DON’T WORRY AT ALL. It’s like when we are up at the hospital, I don’t worry about Tucker so much because he is in the best hands- it’s the same thing at Kars house. She is my guardian angel…we love her and her whole family. She is the type of friend that I know I can show up at her house ANY hour of the day for any reason and her house is open to us. I know I can call her up at the hospital at any hour and say simply “I need you here, now!” and she will stop what she is doing and run right up (yes, that has happened before!! AND her sister KYM- same thing, one of my best friends who has gone above and beyond for me & came running when I said ‘GET HERE NOW”). Kar & Kym, you will never truly understand how grateful I am, how grateful WE are that you are in our life. From the bottom of my heart, thank you.
Tucker felt up to having a friend come over and play. His great friend Jade came over and hung out on Saturday. They just kicked back and played games, they were so cute & had a blast! Then later that night Kar’s son, Joey, came over and spent the night with Tucker. So he has had a great friend weekend. Gotta get those in when we can!
The love and support that we have received thus far has been amazing & incredible! The well wishes and the FOOD we have been completely overwhelmed by. It absolutely astonishes me the kindness and giving nature of all our people in our life. I know we could not have done this without all of you and I hope & pray that every family with a cancer child has THIS kind of support and love that you all have shown to us. I have just been informed that one of Tucker’s little classmates has taken it upon himself to raise his own money for Tucker. When I found this out I broke into tears! I don’t have all the details yet, so when I do I will let you know what this little angel did.
Please everybody, I love the TUCKER’S TEAM tags, and then the TUCKER’S TAGS… please make sure you all get one. Every one that is sold is a support for Tucker. Thank you to ALL who have gotten one and have shown your support that way. Please pass the word and share this website. Also, if you know any child- or have heard of any family who has a kid with cancer please please please, go above and beyond to give them this blog address. My goal and hope is that one day my crazy ramblings will help another mom in my position. So please, share it! Pass it on! I have this need inside of me to help the other mom’s & dads. Maybe that is why Tucker got cancer again, maybe it’s so I can actively help more mom’s & dad’s out there who just don’t know what’s going on, but they are in the same “circle” as me. When I look back now at Tucker’s first battle I know what could have helped me was talking to another mom who went through this same thing, I didn’t get the opportunity to do so until after the fact- but there is such a huge difference in what we mom’s see- and how the doctors perceive the situation. So share it, spread it, support it. My dream would be to start up a support group. Maybe if enough mom’s & dad’s find out about this, it can happen. Please help to make it happen. They don’t even have to live in Utah- maybe you know a kid in Iowa dealing with this! It doesn’t matter; just everybody affected by this… maybe I can help. And if I can’t help, maybe they will get a good laugh at my crazy writings and feel comfort in knowing they are not alone.
I sure hope as we start our next set of 3 day in-house chemo, we are not up for anymore surprises. I looked at Tucker and said- OK NO MORE.. NO MORE SURPRISES… I’M GOOD- WE HAVE COVERED THEM ALL. He just looked at me and laughed. Now that I think back on that… his laugh was a bit evil… hummmm…..
One last thing…. my coworker Joell came one day and said to me- Amber, you know a great idea would be for Tucker to make a “Wish List” at Walmart.com, that way we don’t keep asking you ‘what is Tucker’s favorite things… what does tucker want… what does Tucker like…’ it will all be on there & then we can see what he has got or hasn’t got.” It was a stroke-of-brilliance!!! So sure enough I started a “wish-list” on Walmart.com for Tucker. I set it up and showed Tucker what to do & I explained it to him. His eyes got really BIG and he said “anything mom? I can choose ANYTHING?!” I said YES BUT LET ME CLARIFY, JUST BECAUSE YOU CHOOSE IT DOES NOT MEAN YOU WILL GET IT-OK?” he said ‘OK’ and went off on his “shopping trip”. So to my dear people reading this- if you want to get something personal for Tucker…. Please go to www.walmart.com click on “REGISTRY” at the top of the page select “wish list” then go to “find a wish list” and you can type either TUCKER RICKER or AMBER DICKAMORE hit ‘enter’ and you’ll have his wishes. Now let me make one thing clear- I didn’t give Tucker any limits as to what he could put on this list, so you’ll find items from $5 to $500…. LOL
So have fun with that! J
Love to all, Amber Justin & Tucker
Ps, while you’re shopping at Wal-Mart for Tucker, toss in a bottle of sunscreen for me…. Because one day when this is ALL OVER I’m taking the family to the beach! J J/K
March 8, 2011 Tucker at his oncology appointment and then getting admitted
Tucker getting his IV medicine at home
March 8, 2011 Amber & Tucker at Oncology appointment and then being admitted
Tuesday, March 15, 2011
Took it Like a Man!
Sunday March 13th.
Yes I’ve been up here for a couple days- for the most part Justin has covered the big stuff in his crazy non-rambling-perfectly formatted post (jealous!) . I really need to learn how to not ramble and make more sense……….. naaaa, that’s the fun part about my posts… LOL.
Let me back track to Friday, some different things happened on Friday. This was the first day EVER that neither Justin nor I could be here with Tucker during the day. We both had to go to work. At first I was anxious about leaving Tucker up here but his nurse looked at me and said “think of this like he has the worlds best & most expensive babysitters!” and boy isn’t that the truth! One touch of a button a nurse comes running! He picks up the phone and he has room service! So I started to relax. They also told me that up here the “Kids Crew Volunteers” that they have up here will send up volunteers to come and hang out with Tucker and play Xbox. SWEET! So I got Tucker signed up for the “rotation” schedule and sure enough before I left Tucker had his first volunteer willing to play any xbox game that he wanted. Now my anxiety about leaving Tucker on Friday came more from the fact that Tucker was going to get this chemo shots in his thigh while I was gone. Remember those in my earlier post about the “nuclear bomb of shots”? Ya, he was due for those. I made sure to have my bases covered up here, they have “Child Life Specialist” who’s whole job is to help the kids cope and understand what is going on. One assigned especially for “In House “ kids. His name is Mike and he is SO COOL. But still I was nervous and anxious about leaving him. I went to work and fretted about it all day long. I was a nervous wreck. So when I got back up to the hospital- I just left work and ran right up there- the deed was done, the chemo was in. I said “Tucker, my love my baby! My sweet baby boy how did it go?! Are you OK?! How was the shots???” He looked at me with the very serious gaze and said something to me that I will never forget
“Mom, it was alright, I just sucked it up and I took it like a man!”
My jaw dropped…. My breath caught in my throat…. You took….. it…… like….. a….. *gulp* MAN?! Not MY POOR BABY BOY! YOUR JUST A BABY!
Tucker said “mom, it's alright, I’m fine- you’ll feel better once you go blog about it, you ARE going to tell everybody that I took the shots like a man, right????”
Again……………jaw dropped…Yes Tucker- I’ll tell the world.
So as my little heart broke because my little baby boy…. Is a man… (well, according to him) I “sucked it up” and realized that this time is going to be soooooooooooo much different than last time. Last time when he was 4 years old his whole life is “mom” and he was the “baby” and only mom could give him that comfort cuddle that all babies need. This time Tucker is his own little man, making decisions and being more in charge of what happens to him and his body. He is aware of what is going on and wants his voice heard. But MAN does that break my little heart! Don’t all us mommies just want to keep our babies a baby no matter their age?
He turned to me one random time throughout our stay up there and said “Mom, do you know that most of my childhood has to do with cancer? That’s not normal right? Man, that sucks.”
I said “no Tucker, it's not normal BUT there are many MANY worse things in the world then cancer and many worse kids with harder trials and problems than yours. There are kids who can’t see and never will see- but YOU will get better. There are many kids who can’t walk and never will walk- but YOU will get better. There are kids who can’t hear and never will hear- but YOU will get better. Tucker, Cancer sucks- you bet- BUT there is ALWAYS worse out there, so we need to be grateful for our trial, because it could always be worse.”
He just looked at me, and broke out in this HUGE smiled and said “your right mom, thank you- I love you.”
In the back of my mind I THOUGHT (but didn’t say) …. There are kids who had cancer and didn’t make it- BUT YOU WILL MAKE IT.
Monday March 14th.
We made it home alright, we got sent home on Sunday. Tucker is on 2 iv antibiotics to kill off the icky germ. On the last night at the hospital… my hubby, Justin, had went earlier that day to go and buy a nice extra soft cushion padding to sleep on, the only problem is he is in Clinton and I was in at the hospital (40 mins away). My friend, Karyn was going to come up and see me and Tucker and bring up the sleeping pad, but her plans fell through and she couldn’t make it. So Justin asked me if I wanted him to bring me the new pad to save me from one more night in hell- I can’t even explain to you how horrible the “beds” AKA torture device, are. I told him it was OK, don’t waste the gas it was for only one more night. So I psyched myself up to stand one more night in that trap- when 1 hour latter my husband comes charging through the door like the white knight coming to my rescue! He had this ultra 5 inch pad thick mattress for me…… it was sheer heaven! He brought the kids but they could not come in to see tucker, so we took tucker out to the waiting area. They were excited to see him and Lily had a lot of questions (Tucker was all hooked up to tubes and IV’s and his machine was beeping). It was great to see the kids! Thank you Justin for charging to my rescue! I slept great that night.
Right after Justin left, Tucker’s teacher showed up. I just sat quietly to the side as she took him through his lessons. She spent a good hour and a half up there teaching Tucker. She stayed right up until 10 pm, the end of visiting hours. She put Tucker through the works! Math, spelling, ect ect ect…. It was GREAT! Tucker loved every minute of her visiting and her teaching. She saw us 2 times up at the hospital this last stay! Thank you so much Mrs. Shipman! You are the best most dedicated teacher ever. We got so lucky to have you and I don’t know what we would have ever done without you. Your dedication to my son’s education means so much to me.
More to come later- but I feel like I’m still catching up on my sleep. Love to all… (did I mention that I have to give Tucker is IV at midnight, every night? The one thing about being home is we have to do it all… LOL sometimes I DO miss the hospital) ……………………..Amber Justin & Tucker
Yes I’ve been up here for a couple days- for the most part Justin has covered the big stuff in his crazy non-rambling-perfectly formatted post (jealous!) . I really need to learn how to not ramble and make more sense……….. naaaa, that’s the fun part about my posts… LOL.
Let me back track to Friday, some different things happened on Friday. This was the first day EVER that neither Justin nor I could be here with Tucker during the day. We both had to go to work. At first I was anxious about leaving Tucker up here but his nurse looked at me and said “think of this like he has the worlds best & most expensive babysitters!” and boy isn’t that the truth! One touch of a button a nurse comes running! He picks up the phone and he has room service! So I started to relax. They also told me that up here the “Kids Crew Volunteers” that they have up here will send up volunteers to come and hang out with Tucker and play Xbox. SWEET! So I got Tucker signed up for the “rotation” schedule and sure enough before I left Tucker had his first volunteer willing to play any xbox game that he wanted. Now my anxiety about leaving Tucker on Friday came more from the fact that Tucker was going to get this chemo shots in his thigh while I was gone. Remember those in my earlier post about the “nuclear bomb of shots”? Ya, he was due for those. I made sure to have my bases covered up here, they have “Child Life Specialist” who’s whole job is to help the kids cope and understand what is going on. One assigned especially for “In House “ kids. His name is Mike and he is SO COOL. But still I was nervous and anxious about leaving him. I went to work and fretted about it all day long. I was a nervous wreck. So when I got back up to the hospital- I just left work and ran right up there- the deed was done, the chemo was in. I said “Tucker, my love my baby! My sweet baby boy how did it go?! Are you OK?! How was the shots???” He looked at me with the very serious gaze and said something to me that I will never forget
“Mom, it was alright, I just sucked it up and I took it like a man!”
My jaw dropped…. My breath caught in my throat…. You took….. it…… like….. a….. *gulp* MAN?! Not MY POOR BABY BOY! YOUR JUST A BABY!
Tucker said “mom, it's alright, I’m fine- you’ll feel better once you go blog about it, you ARE going to tell everybody that I took the shots like a man, right????”
Again……………jaw dropped…Yes Tucker- I’ll tell the world.
So as my little heart broke because my little baby boy…. Is a man… (well, according to him) I “sucked it up” and realized that this time is going to be soooooooooooo much different than last time. Last time when he was 4 years old his whole life is “mom” and he was the “baby” and only mom could give him that comfort cuddle that all babies need. This time Tucker is his own little man, making decisions and being more in charge of what happens to him and his body. He is aware of what is going on and wants his voice heard. But MAN does that break my little heart! Don’t all us mommies just want to keep our babies a baby no matter their age?
He turned to me one random time throughout our stay up there and said “Mom, do you know that most of my childhood has to do with cancer? That’s not normal right? Man, that sucks.”
I said “no Tucker, it's not normal BUT there are many MANY worse things in the world then cancer and many worse kids with harder trials and problems than yours. There are kids who can’t see and never will see- but YOU will get better. There are many kids who can’t walk and never will walk- but YOU will get better. There are kids who can’t hear and never will hear- but YOU will get better. Tucker, Cancer sucks- you bet- BUT there is ALWAYS worse out there, so we need to be grateful for our trial, because it could always be worse.”
He just looked at me, and broke out in this HUGE smiled and said “your right mom, thank you- I love you.”
In the back of my mind I THOUGHT (but didn’t say) …. There are kids who had cancer and didn’t make it- BUT YOU WILL MAKE IT.
Monday March 14th.
We made it home alright, we got sent home on Sunday. Tucker is on 2 iv antibiotics to kill off the icky germ. On the last night at the hospital… my hubby, Justin, had went earlier that day to go and buy a nice extra soft cushion padding to sleep on, the only problem is he is in Clinton and I was in at the hospital (40 mins away). My friend, Karyn was going to come up and see me and Tucker and bring up the sleeping pad, but her plans fell through and she couldn’t make it. So Justin asked me if I wanted him to bring me the new pad to save me from one more night in hell- I can’t even explain to you how horrible the “beds” AKA torture device, are. I told him it was OK, don’t waste the gas it was for only one more night. So I psyched myself up to stand one more night in that trap- when 1 hour latter my husband comes charging through the door like the white knight coming to my rescue! He had this ultra 5 inch pad thick mattress for me…… it was sheer heaven! He brought the kids but they could not come in to see tucker, so we took tucker out to the waiting area. They were excited to see him and Lily had a lot of questions (Tucker was all hooked up to tubes and IV’s and his machine was beeping). It was great to see the kids! Thank you Justin for charging to my rescue! I slept great that night.
Right after Justin left, Tucker’s teacher showed up. I just sat quietly to the side as she took him through his lessons. She spent a good hour and a half up there teaching Tucker. She stayed right up until 10 pm, the end of visiting hours. She put Tucker through the works! Math, spelling, ect ect ect…. It was GREAT! Tucker loved every minute of her visiting and her teaching. She saw us 2 times up at the hospital this last stay! Thank you so much Mrs. Shipman! You are the best most dedicated teacher ever. We got so lucky to have you and I don’t know what we would have ever done without you. Your dedication to my son’s education means so much to me.
More to come later- but I feel like I’m still catching up on my sleep. Love to all… (did I mention that I have to give Tucker is IV at midnight, every night? The one thing about being home is we have to do it all… LOL sometimes I DO miss the hospital) ……………………..Amber Justin & Tucker
Monday, March 14, 2011
Yes people- yes, the REAL New York Yankees sent Tucker a get-well-soon "card". They heard about Tucker and how sick he's been and on Friday up at the hospital a very special package showed up in Tucker's room and this video is what was inside. Along with a very special letter from an amazing woman at the Yankees. Thank you Jean, your amazing. You stepped in before and spoiled my "little Yankees" rotten a couple years ago, and now you've gone above and beyond to amaze and shock Tucker again. We truly feel as if the YANKEES are apart of Team Tucker. Tucker (and family) are also very much apart of the Yankees team.
Thank You Yankees- super super cool!
Thursday, March 10, 2011
Justin's Post
Here we are, day three of what was supposed to be only a couple of hours for a routine chemo visit, and it looks like we have another three days to go. Tucker decided he was going to play mad microbiologist and experiment with a strange bacteria and see what would happen if he tried to grow it in his access tubes. Well, it grew and necessitated the removal of the tubes. Something about how the bacteria was not a good thing to be growing in the human body.
Tuesday, March 8th.
Tuesday was supposed to be standard chemo but because Tuckers previous blood culture actually grew something we were required to be admitted. They have identified the family of the culprit bacteria; it is a mycobacterium. This is a large family of bacteria and is found just about everywhere. We normally are not affected by contact with this bacterium but those with a compromised immune system cannot fight it. Tuckers access tubes had become a lovely little greenhouse for the bug and the doctors were concerned that it may have spread and started to grow in other parts of his body.
We started this inquisition by having Tucker drink about half a gallon of a contrast medium. Once he was able to suck all that down, and having an amazingly full bladder, we were ready for the CT scan. They wanted to verify that the bacteria hadn’t moved into his liver, kidneys, abdomen, or brain. So, at about 8:00 pm Tuesday night, we finally went down for the scan. The doc had to give him an IV as his port wouldn’t allow them to administer the IV contrast solution quick enough. Tucker loves getting needles constantly poked into him! After a 45 minute scan we were allowed to return back to the room and told that they needed to remove his access tubes. His surgery was scheduled for 8pm the following evening. Talk about pushing the torture threshold! We convinced the docs to allow him to eat breakfast but he wouldn’t be allowed to eat or drink after 10am.
Wednesday, March 9th.
After a breakfast of French toast it was time to wait. We watched boring TV shows, played XBOX, received visits from multiple doctors, and nurses. Preliminary results eventually came back later in the day and we were happy to be told that they could find no evidence of the bacteria in neither body cavities nor organs. They did see something in his brain that concerned them and needed to be looked at a little closer. Xenobiologists were called in to examine it but explained that it was just the alien bacterial home on the brain where they control the thoughts and actions of most all pre-adolescents. This alien control tends to peak, exhibiting near lunacy, around the time of puberty but usually mellows out as the host ages. There are exceptions to this though! The alien controlled lunacy can persist and is commonly seen in the mentally ill and politicians (yes, I do recognize the obvious parallel between the two).
The xenobiologist departed and the doctors from Infectious Disease came in and pretended to know nothing about a so-called xenobiologist, alien control, etc. Typical cover-up! They did say that the spot they saw on Tuckers brain was very small, most likely associated with his cancer and not the bacteria, and therefore not a concern. Good news but I still think they are trying to pretend there is no alien conspiracy.
The rest of the day on Wednesday we just hung out waiting for 8pm to roll around so that Tucker could get his tubes removed and then finally eat and drink. We were quite surprised when, at about 4:15 pm, the surgery tech arrived to take him down to surgery. The procedure to remove the tubes was quick and Tucker did great! He was done in about half an hour with just a small bandage over the site.
Back up in our room we hung out until Amber came up once she got off work. I selfishly made Amber go home so that I could sleep another night on the amazing fold-out hospital bed (it’s so comfortable that I don’t even realize I’ve even slept. Can I insert an LOL here?). Tucker had to get another IV (he now has one in each arm) so that they could more easily draw blood. He received an infusion of platelets and, later that night, a transfusion of two units of blood. This was his own little vampire session but, for those of you concerned, has not yet begun to grow fangs nor become sensitive to sunlight. The night was lovely, with the nurse coming in and out of the room constantly. We really need to figure out how to hire ghosts; I really believe they could perform the nursing duties less obtrusively. I’m not complaining about the nurses, they have all been wonderful; I just tend to be a little more sarcastic in the morning.
Thursday, March 10th.
Coffee for me, scrambled eggs and bacon for Tucker and slight zombification for both of us. We are told that Tucker needs to stay here for another three days while the antibiotics work and get rid of the bacteria; after that they will put in another port. This will most likely be a sub dermal port like he had three years ago. This will help protect against further infection and allow Tucker to take baths and showers without the need for covering his site up. That’s great for us as all kids smell funny and need constant bathing to make the air around them breathable (I believe that’s even a direct quote from Einstein, the Pope, or someone like that).
Tucker is now trying to defend some planet from a horrible alien scourge (Halo 3), and I sit writing this with the hope that my editor will not require me to do a massive rewrite. Grandma Dickamore is coming at 2pm to be with Tucker; other than that it’s just waiting. Boring! The doctors refuse to give Tucker any, as they call it, unnecessary surgeries. I’ve asked them to give Tucker a robot brain, gorilla arms, and other awesome oddities but they ignore me. Like I said: BORING! Oh well, I guess I’ll just play Halo with Tuk.
Tuesday, March 8th.
Tuesday was supposed to be standard chemo but because Tuckers previous blood culture actually grew something we were required to be admitted. They have identified the family of the culprit bacteria; it is a mycobacterium. This is a large family of bacteria and is found just about everywhere. We normally are not affected by contact with this bacterium but those with a compromised immune system cannot fight it. Tuckers access tubes had become a lovely little greenhouse for the bug and the doctors were concerned that it may have spread and started to grow in other parts of his body.
We started this inquisition by having Tucker drink about half a gallon of a contrast medium. Once he was able to suck all that down, and having an amazingly full bladder, we were ready for the CT scan. They wanted to verify that the bacteria hadn’t moved into his liver, kidneys, abdomen, or brain. So, at about 8:00 pm Tuesday night, we finally went down for the scan. The doc had to give him an IV as his port wouldn’t allow them to administer the IV contrast solution quick enough. Tucker loves getting needles constantly poked into him! After a 45 minute scan we were allowed to return back to the room and told that they needed to remove his access tubes. His surgery was scheduled for 8pm the following evening. Talk about pushing the torture threshold! We convinced the docs to allow him to eat breakfast but he wouldn’t be allowed to eat or drink after 10am.
Wednesday, March 9th.
After a breakfast of French toast it was time to wait. We watched boring TV shows, played XBOX, received visits from multiple doctors, and nurses. Preliminary results eventually came back later in the day and we were happy to be told that they could find no evidence of the bacteria in neither body cavities nor organs. They did see something in his brain that concerned them and needed to be looked at a little closer. Xenobiologists were called in to examine it but explained that it was just the alien bacterial home on the brain where they control the thoughts and actions of most all pre-adolescents. This alien control tends to peak, exhibiting near lunacy, around the time of puberty but usually mellows out as the host ages. There are exceptions to this though! The alien controlled lunacy can persist and is commonly seen in the mentally ill and politicians (yes, I do recognize the obvious parallel between the two).
The xenobiologist departed and the doctors from Infectious Disease came in and pretended to know nothing about a so-called xenobiologist, alien control, etc. Typical cover-up! They did say that the spot they saw on Tuckers brain was very small, most likely associated with his cancer and not the bacteria, and therefore not a concern. Good news but I still think they are trying to pretend there is no alien conspiracy.
The rest of the day on Wednesday we just hung out waiting for 8pm to roll around so that Tucker could get his tubes removed and then finally eat and drink. We were quite surprised when, at about 4:15 pm, the surgery tech arrived to take him down to surgery. The procedure to remove the tubes was quick and Tucker did great! He was done in about half an hour with just a small bandage over the site.
Back up in our room we hung out until Amber came up once she got off work. I selfishly made Amber go home so that I could sleep another night on the amazing fold-out hospital bed (it’s so comfortable that I don’t even realize I’ve even slept. Can I insert an LOL here?). Tucker had to get another IV (he now has one in each arm) so that they could more easily draw blood. He received an infusion of platelets and, later that night, a transfusion of two units of blood. This was his own little vampire session but, for those of you concerned, has not yet begun to grow fangs nor become sensitive to sunlight. The night was lovely, with the nurse coming in and out of the room constantly. We really need to figure out how to hire ghosts; I really believe they could perform the nursing duties less obtrusively. I’m not complaining about the nurses, they have all been wonderful; I just tend to be a little more sarcastic in the morning.
Thursday, March 10th.
Coffee for me, scrambled eggs and bacon for Tucker and slight zombification for both of us. We are told that Tucker needs to stay here for another three days while the antibiotics work and get rid of the bacteria; after that they will put in another port. This will most likely be a sub dermal port like he had three years ago. This will help protect against further infection and allow Tucker to take baths and showers without the need for covering his site up. That’s great for us as all kids smell funny and need constant bathing to make the air around them breathable (I believe that’s even a direct quote from Einstein, the Pope, or someone like that).
Tucker is now trying to defend some planet from a horrible alien scourge (Halo 3), and I sit writing this with the hope that my editor will not require me to do a massive rewrite. Grandma Dickamore is coming at 2pm to be with Tucker; other than that it’s just waiting. Boring! The doctors refuse to give Tucker any, as they call it, unnecessary surgeries. I’ve asked them to give Tucker a robot brain, gorilla arms, and other awesome oddities but they ignore me. Like I said: BORING! Oh well, I guess I’ll just play Halo with Tuk.
Go! Give it Up!
Tucker went in for a surgery yesterday as most of you know to remove his tubes. They had become infected and started growing nasty bacteria, so out they came. Tucker’s blood had finally “crashed” from all the chemo and he was at levels where he needed transfusions. So yesterday before the surgery he got a transfusion of platelets and then after the surgery he got 2 bags of the good stuff, good old blood. If any of you donate blood and you do it grudgingly or heck, don’t even do it at all, please think about Tucker! Tucker has got blood yesterday that some great person in Utah had taken the time to go to a blood drive somewhere out there and now it’s helping my son! It’s absolutely amazing to me to think that a complete stranger’s blood is helping my child feel better. There are a lot of cancer kids up in the ward and all of them need blood transfusions at one time or another, so please when you see the blood drive by your work or home, don’t drive past it, Go, give it up- you just never know who it could be helping.
Now the funny thing about getting a blood transfusion is think of it like a bag full of pure caffeine hook right into your vein. When these kids get fresh new “excited” blood cells and they are running through your body- its like drinking a VOLT mixed with cappuccino topped with a bag of gummy worms, followed by a ROCK STAR- shaken, not stirred, and here you go sir, 2 bags of straight caffeine, would you like fries with that? It makes them feel great. On our first go round with cancer I remember how scared I was about his transfusions, but my fear came out of not knowing- aren’t we all afraid of the unknown? But after I saw the dramatic instant affect of the best “happy pill” Tucker could ever have, I started to look forward to them.
We don’t have any word yet about going home. The nurses seem to think that it will be soon, but one thing I’ve learn is there definition of “soon” and our definition of “soon” are very different.
We got a nice little surprise in the mail a few days ago from my Grandma Bunny in Washington. She sent this big box full of seashells! They are beautiful! Thanks Grams! They made me homesick.. and it got Tucker excited to one day go see the ocean again. He thinks they are so cool and has held them up to his ear so he can “hear” the waves. Oh and she also sent a hat shaped like a bear, its adorable! I think this is her way of telling me to take Tucker on a “Bear Hunt!”…. you all know the song… Going on a Bear Hunt (repeat)…. I’m not afraid (repeat)…. I got my BIG riffle (repeat)…. And my bullets too… *singing* and the song goes on and on. It one of the best memories I have as a kid with Grams Bunny she would always take us on “Bear Hunts” and we had to go through the swamp… and over the mountain… just to find the “bear” get scared and run all the way home.
Justin is up with Tucker for these past 2 days, I’m just so at a loss for words to accurately explain how I feel about him. Its beyond wonderful, caring, giving, loving…its so much more. Him and Tucker had a big Xbox game day yesterday and played BlackOps for hours! They had a blast (they both told me that) and then I brought up Halo and they kicked me out last night because I kept dying, Tucker said “mom, even Lily (my 7 year old step-daughter) can kill you & is better than you!” Hey, I know I suck; all I can figure out to do is look up, look down, run while I’m looking down or up….. and get stuck in many corners in the buildings that are in that game. So I left my 2 boys up there deep inside a HALO challenge of killing aliens and saving the world or something like that. They finally pushed PAUSE long enough to say bye to me. I left in high spirits knowing that Justin is doing stuff with Tucker that I can never do and that Tucker’s needs. He needs that time without “mom freaking out” or me babying him every which way- he needs dad up there saying DO IT YOURSELF KID, YOUR FINE, HEY LETS KILL SOME ALIENS. Justin is my perfect opposite. Thank you honey, I love you.
That’s all for now, love Amber Justin & Tucker.
Now the funny thing about getting a blood transfusion is think of it like a bag full of pure caffeine hook right into your vein. When these kids get fresh new “excited” blood cells and they are running through your body- its like drinking a VOLT mixed with cappuccino topped with a bag of gummy worms, followed by a ROCK STAR- shaken, not stirred, and here you go sir, 2 bags of straight caffeine, would you like fries with that? It makes them feel great. On our first go round with cancer I remember how scared I was about his transfusions, but my fear came out of not knowing- aren’t we all afraid of the unknown? But after I saw the dramatic instant affect of the best “happy pill” Tucker could ever have, I started to look forward to them.
We don’t have any word yet about going home. The nurses seem to think that it will be soon, but one thing I’ve learn is there definition of “soon” and our definition of “soon” are very different.
We got a nice little surprise in the mail a few days ago from my Grandma Bunny in Washington. She sent this big box full of seashells! They are beautiful! Thanks Grams! They made me homesick.. and it got Tucker excited to one day go see the ocean again. He thinks they are so cool and has held them up to his ear so he can “hear” the waves. Oh and she also sent a hat shaped like a bear, its adorable! I think this is her way of telling me to take Tucker on a “Bear Hunt!”…. you all know the song… Going on a Bear Hunt (repeat)…. I’m not afraid (repeat)…. I got my BIG riffle (repeat)…. And my bullets too… *singing* and the song goes on and on. It one of the best memories I have as a kid with Grams Bunny she would always take us on “Bear Hunts” and we had to go through the swamp… and over the mountain… just to find the “bear” get scared and run all the way home.
Justin is up with Tucker for these past 2 days, I’m just so at a loss for words to accurately explain how I feel about him. Its beyond wonderful, caring, giving, loving…its so much more. Him and Tucker had a big Xbox game day yesterday and played BlackOps for hours! They had a blast (they both told me that) and then I brought up Halo and they kicked me out last night because I kept dying, Tucker said “mom, even Lily (my 7 year old step-daughter) can kill you & is better than you!” Hey, I know I suck; all I can figure out to do is look up, look down, run while I’m looking down or up….. and get stuck in many corners in the buildings that are in that game. So I left my 2 boys up there deep inside a HALO challenge of killing aliens and saving the world or something like that. They finally pushed PAUSE long enough to say bye to me. I left in high spirits knowing that Justin is doing stuff with Tucker that I can never do and that Tucker’s needs. He needs that time without “mom freaking out” or me babying him every which way- he needs dad up there saying DO IT YOURSELF KID, YOUR FINE, HEY LETS KILL SOME ALIENS. Justin is my perfect opposite. Thank you honey, I love you.
That’s all for now, love Amber Justin & Tucker.
Tuesday, March 8, 2011
Update
Quick update on Tucker. He has been admitted again- the bacteria that they confirmed is growing is a “nasty” little bug that can cause some serious damage if its not taken care of right away. This bacteria is growing on Tucker’s tubes so they have to go- on Wednesday at 8pm (ugh!) he is scheduled to get his lines removed. He will have a pick line or a hard IV line in until they can confirm that the bacteria is gone and at that point we can have another line put back into Tucker. Tucker will have to stay at the hospital until a new line is put in because all of the antibiotics he is on have to be given through an IV. Tucker is going down today for a CAT scan just to make sure this little bacteria hasn’t nestled anywhere else in his body. This is treatable, it just takes a little while longer to treat then normal infections like strep or something like that.
I will write more tomorrow after I know more.
Justin has taken the night shift and gets a turn on the super (ugh!) comfy (UGH UGH) bed up at the hospital. Thank you Justin. I don’t know what I would do without you.
Love you Justin.
Love you all, Amber
I will write more tomorrow after I know more.
Justin has taken the night shift and gets a turn on the super (ugh!) comfy (UGH UGH) bed up at the hospital. Thank you Justin. I don’t know what I would do without you.
Love you Justin.
Love you all, Amber
Monday, March 7, 2011
Lets hear it for the Paranoid Doctors…
Lets hear it for the paranoid doctors…
Ok, so it went down like this- 9pm last night Tucker was all cleaned and tucked into bed, Justin was lying in bed reading a book and I was just finishing a movie in the front room. I don’t typically answer my phone after 9pm, but hey this time my phone was ringing and I was thinking it could be a neighbor or somebody from church- so I answered it. It was the doc’s at PCH saying that they confirmed a bacteria growth in tucker’s blood that they took on Thursday (remember last post about the soup and how he spiked a fever right before we left?) and that I needed to bring him right in to get treatments. They said How is he feeling- I said, he’s fine- no fever, no worries, nothing gone wrong since we got home, are you sure this isn’t some mistake? They said no, how far away do you live (ahem, should be shown in the chart that your looking at right?)…. I live in Clinton- just 40 minutes away- they said OK see in 40 minutes. So I fly through the house packing (we had just unpacked) Justin got Tucker up and ready and he helped me as much as he could and he even offered to go in my place. Justin kept saying: Its ok Amber, I can go if you want me to I will go. I told him, I’ve actually caught up on my sleep and actually had a very relaxing Sunday with not much going on- that I’m probably more caught up on my sleep then he was (he had a cold camping scouts trip from Friday to Saturday with Jaired his oldest son and then he work Saturday and Sunday) I said- I’ll go, its fine, but if they keep us any longer than just this night I’ll have you come up and switch out with me. So he helped us pack and load up the car and by 11pm we were back up to the hospital. By midnight the doc had finished checking Tucker in…ugh- so stupid questions like “whats your family history”… “what meds is he on”… I’m like Look Lady, its midnight I’m tired- and quite frankly if you were to go & pull up our file before you bothered to come in our room it would tell you everything you have ever wanted to know about us,I’m sure along with tons of other stuff you didn’t need to know about us like nifty little facts like underwear size and how I take my coffee- so why don’t you go do that, I’m sure its just a page turner, and I bet you might even find a special warning note in there about not giving me water after midnight…. (dun, dun dun…. Movie quote- anybody get it? ). She just said ok did a little exam with Tucker and left.
So fast forward to this morning another doc came in and just said that they have confirmed something growing on his blood- Oh, Come on people! Tell me something I DON’T know! Then she said- hey we want to keep him until tomorrow so we can confirm what bacteria is growing on his blood. She said “is that ok?” I said NO..
I said- wait wait wait wait….. lets THINK about this for a minute. He’s been on a huge amount of antibiotic since we walked in the door- right? Right. He has NOT had ONE FEVER… right? Right. We are already scheduled to come BACK up here tomorrow (Tuesday) for our NORMAL chemo appointment… RIGHT? Right. So you’re telling me you want to keep him up here just to “see” what is growing on his blood even though there is NO MEDICAL REASON to keep us here right now- all of these antibiotics that he’s on he can be sent home with, CORRECT? Correct. An d we live exactly 40 minutes away from here….. so- Ok, then having said ALLLLLLLL that- no its not “ok” if we stay another night. Please go tell the head Oncologist that I want to see them. Then the little doctor said to me “oh I see your point! I think it might be ok if you guys go home today!” I’m like OH MY GOOOOOODNESSSSSSS….. its times like this when I remind myself THEY DO NOT CONTROL MY LIFE- THEY DO NOT CONTROL TUCKER’S LIFE- THERE ARE OPTIONS THERE ARE CHOICES IT DOESN’T ALWAYS HAVE TO GO THERE WAY.
So 10 minutes after that little doc scurried out of here, the head Oncologist showed up and agreed with everything I had to say (what?! They ARE listening to me?!) and sure enough me and Tucker will be headed home in an hour or so.
This is just….so much- honestly we have only been OUT of “jail” now for 2 DAYS!!!
Ok ok, but the important thing is we are going home. I have been on the phone with Justin thought this whole thing and he was cussing a lot (at the doc’s not me) and very upset also because he shares my point of view- he complemented my “claws” and is very happy we are coming home. I love you Justin, thank you for your support. And if you read this before tonight- DINNER IS UP TO YOU….YOUR TURN TO COOK….
LOL j/k
Love you all Amber, Justin & Tucker.
Ok, so it went down like this- 9pm last night Tucker was all cleaned and tucked into bed, Justin was lying in bed reading a book and I was just finishing a movie in the front room. I don’t typically answer my phone after 9pm, but hey this time my phone was ringing and I was thinking it could be a neighbor or somebody from church- so I answered it. It was the doc’s at PCH saying that they confirmed a bacteria growth in tucker’s blood that they took on Thursday (remember last post about the soup and how he spiked a fever right before we left?) and that I needed to bring him right in to get treatments. They said How is he feeling- I said, he’s fine- no fever, no worries, nothing gone wrong since we got home, are you sure this isn’t some mistake? They said no, how far away do you live (ahem, should be shown in the chart that your looking at right?)…. I live in Clinton- just 40 minutes away- they said OK see in 40 minutes. So I fly through the house packing (we had just unpacked) Justin got Tucker up and ready and he helped me as much as he could and he even offered to go in my place. Justin kept saying: Its ok Amber, I can go if you want me to I will go. I told him, I’ve actually caught up on my sleep and actually had a very relaxing Sunday with not much going on- that I’m probably more caught up on my sleep then he was (he had a cold camping scouts trip from Friday to Saturday with Jaired his oldest son and then he work Saturday and Sunday) I said- I’ll go, its fine, but if they keep us any longer than just this night I’ll have you come up and switch out with me. So he helped us pack and load up the car and by 11pm we were back up to the hospital. By midnight the doc had finished checking Tucker in…ugh- so stupid questions like “whats your family history”… “what meds is he on”… I’m like Look Lady, its midnight I’m tired- and quite frankly if you were to go & pull up our file before you bothered to come in our room it would tell you everything you have ever wanted to know about us,I’m sure along with tons of other stuff you didn’t need to know about us like nifty little facts like underwear size and how I take my coffee- so why don’t you go do that, I’m sure its just a page turner, and I bet you might even find a special warning note in there about not giving me water after midnight…. (dun, dun dun…. Movie quote- anybody get it? ). She just said ok did a little exam with Tucker and left.
So fast forward to this morning another doc came in and just said that they have confirmed something growing on his blood- Oh, Come on people! Tell me something I DON’T know! Then she said- hey we want to keep him until tomorrow so we can confirm what bacteria is growing on his blood. She said “is that ok?” I said NO..
I said- wait wait wait wait….. lets THINK about this for a minute. He’s been on a huge amount of antibiotic since we walked in the door- right? Right. He has NOT had ONE FEVER… right? Right. We are already scheduled to come BACK up here tomorrow (Tuesday) for our NORMAL chemo appointment… RIGHT? Right. So you’re telling me you want to keep him up here just to “see” what is growing on his blood even though there is NO MEDICAL REASON to keep us here right now- all of these antibiotics that he’s on he can be sent home with, CORRECT? Correct. An d we live exactly 40 minutes away from here….. so- Ok, then having said ALLLLLLLL that- no its not “ok” if we stay another night. Please go tell the head Oncologist that I want to see them. Then the little doctor said to me “oh I see your point! I think it might be ok if you guys go home today!” I’m like OH MY GOOOOOODNESSSSSSS….. its times like this when I remind myself THEY DO NOT CONTROL MY LIFE- THEY DO NOT CONTROL TUCKER’S LIFE- THERE ARE OPTIONS THERE ARE CHOICES IT DOESN’T ALWAYS HAVE TO GO THERE WAY.
So 10 minutes after that little doc scurried out of here, the head Oncologist showed up and agreed with everything I had to say (what?! They ARE listening to me?!) and sure enough me and Tucker will be headed home in an hour or so.
This is just….so much- honestly we have only been OUT of “jail” now for 2 DAYS!!!
Ok ok, but the important thing is we are going home. I have been on the phone with Justin thought this whole thing and he was cussing a lot (at the doc’s not me) and very upset also because he shares my point of view- he complemented my “claws” and is very happy we are coming home. I love you Justin, thank you for your support. And if you read this before tonight- DINNER IS UP TO YOU….YOUR TURN TO COOK….
LOL j/k
Love you all Amber, Justin & Tucker.
Friday, March 4, 2011
How do you take your soup?
You can ask my husband and friends & co workers that I was nervous… so nervous about Tucker’s big in house chemo that we just lived through. Being admitted for 3 days worth of chemo is new to us, we have never had this much over this many days before so I just didn’t know what we were in for. Think of it like… Yes I’ve had this soup before, but I’ve never had it made that way and what’s all this extra stuff you put in?? I thought you just add water and stir- but you put in all this extra crap and you’re telling me this is better? I think adding water is plenty… what’s that? You say I HAVE to eat this?! Fine then, we will eat it- but just so you know we are NOT GOING TO LIKE IT!
So how did the soup go? Well, it wasn’t smooth at all (see that’s why, ONLY ADD WATER & NOTHING ELSE!)- It wasn’t tasty or great, but we choked it down all right. Tucker handled it like a trooper; he is such an amazing kid. Every medicine he gets comes with certain possible side effects, and aside from anaphylactic shock- he nailed about each other of em’. The one that we are dealing with the most right now is body aches and pains. You know how when you get the flu your whole body hurts every inch of you just feels like you’ve been hit by a truck? That’s how Tucker feels. Mostly in his back, it hurt so bad that I could only gently rub his back and he was twitching in pain. We ended up packing ice packs all over on his back & it seemed to help- along of course with a morphine drip and regular oxycodone dose. Also because this chemo will cause your EYE’S to get infected they had to start him on eye drops every 3 hours (all night long also along with chemo & pain meds- we didn’t sleep much).
Just when we think we know what’s going on- and pretty sure not much else can fit into this soup without it overflowing- the “chef” came in and said its time to add the secret ingredient- 2 big shots given right into his thighs deep into his muscle. Now when I say shot it doesn’t sound that bad right? We have all had shots, they suck but we get over it. When they brought in THESE shots my breath caught in my throat…………………. My eyes got HUGE- its like they just added a whole bottle of extra super hot Tabasco sauce to the soup- I was like HOLY CRAP, YOU HAVE GOT TO BE KIDDING ME THESE SHOTS WERE LIKE THE NUCLEAR BOMB OF SHOTS! - I looked at Tucker and I had him close his eyes, he held onto my hands and he took a deep breath and said “Ok, I’m ready mom, it’s ok, tell them to go.” Oh jeez he wants ME to talk? I haven’t gotten over my shock yet from looking at those shots, so I look at the nurses (2 shots have to be given at the same time so 2 nurses were there) and I tried to muster up something to say- but the words were caught in my throat-nothing came out- dang that Tabasco sauce! I just nodded at them and BAMB! they did it. Ugh, it just hurt my heart! It’s hard for me to even think about it. Tucker didn’t move at all he just squeezed my hands so tight I thought they were going to break…… and then it was over. No crying, no screaming, or kicking… he just relaxed and breathed and hugged me and then we watched cartoons, and he was fine. I’m the freaking out mom saying- what can I get you? What do you want? Need? Food? Candy? Drinks? He was like- no, no, no… mom, can’t I just watch my cartoons? I’m like- well sure…. Of course isn’t there SOMETHING I can do? He said: Yes, could you turn up the TV I can’t hear it over your taking. HUMMMMMMM… I think he’s trying to tell me something…..
So we were getting ready to discharge and Tucker spiked a fever…… OH GOODNESS… did you guys know that if a cancer kid has a fever they get an automatic 48 hour stay at the hospital???? So this happened on Thursday the day we were scheduled to discharge….. can you imagine my frustration??? Well the doc said one of the side effects of the “soup” is a fever- I said is it because of all the extra hot Tabasco sauce you put in the damn soup?? And they actually said “yes” and since it is a side effect, they let us go home- hurrrrrray! BUT (isn’t there always a but?) YOU CAN’T LEAVE WITHOUT DESERT. Um, no thanks we are full. Oh? You weren’t asking? I figured….. Fine then, what’s for desert? Neupogen….. yummy Neupogen… can’t we just have cheese cake?
Neupogen is a nifty “desert” that makes your bone marrow and blood counts recover better & faster after heavy chemo. So when Tucker’s blood counts “crash” after this course of “soup” this will help it recover quickly and reduces his chances of getting food poisoning -eeerrr… I mean… infection. This “desert” sounds to good to be true, what’s the catch? I have to give it to him, at home, for 8 days- a shot for 8 days, and the sweet topping -- its a VERY expensive medicine and it cost me out of my pocket over $300 to pick up. WOW- that’s an EXPENSIVE desert! But thanks to all my wonderful friends and family- and complete strangers who donated- I said, $300? Phish- that’s just chump change… (I’M SO KIDDING MY REACTION WAS QUITE THE OPPOSITE..more like HOLY CRAP ARE YOU FREAKING SERIOUS?!?!).
So they took me through the “training” on how to give my child shots when we get home- loaded us up with 5 MORE pills on top of the 10 he’s already taking and finally sent us home… we got home very very late Thursday night. Everything just seems better when you’re at home. Tucker is happier and relaxed and relieved and I’m SOOOO excited to sleep in a bed & next to my nice warm cuddly cute husband. Justin’s job took him out of state for the same days that we were up at the hospital- he got home on Wednesday night we got home on Thursday night- isn’t that just how it works out sometimes? Its just life.
We are home… ya-ya for home!
Love you all, Amber Justin & Tucker.
So how did the soup go? Well, it wasn’t smooth at all (see that’s why, ONLY ADD WATER & NOTHING ELSE!)- It wasn’t tasty or great, but we choked it down all right. Tucker handled it like a trooper; he is such an amazing kid. Every medicine he gets comes with certain possible side effects, and aside from anaphylactic shock- he nailed about each other of em’. The one that we are dealing with the most right now is body aches and pains. You know how when you get the flu your whole body hurts every inch of you just feels like you’ve been hit by a truck? That’s how Tucker feels. Mostly in his back, it hurt so bad that I could only gently rub his back and he was twitching in pain. We ended up packing ice packs all over on his back & it seemed to help- along of course with a morphine drip and regular oxycodone dose. Also because this chemo will cause your EYE’S to get infected they had to start him on eye drops every 3 hours (all night long also along with chemo & pain meds- we didn’t sleep much).
Just when we think we know what’s going on- and pretty sure not much else can fit into this soup without it overflowing- the “chef” came in and said its time to add the secret ingredient- 2 big shots given right into his thighs deep into his muscle. Now when I say shot it doesn’t sound that bad right? We have all had shots, they suck but we get over it. When they brought in THESE shots my breath caught in my throat…………………. My eyes got HUGE- its like they just added a whole bottle of extra super hot Tabasco sauce to the soup- I was like HOLY CRAP, YOU HAVE GOT TO BE KIDDING ME THESE SHOTS WERE LIKE THE NUCLEAR BOMB OF SHOTS! - I looked at Tucker and I had him close his eyes, he held onto my hands and he took a deep breath and said “Ok, I’m ready mom, it’s ok, tell them to go.” Oh jeez he wants ME to talk? I haven’t gotten over my shock yet from looking at those shots, so I look at the nurses (2 shots have to be given at the same time so 2 nurses were there) and I tried to muster up something to say- but the words were caught in my throat-nothing came out- dang that Tabasco sauce! I just nodded at them and BAMB! they did it. Ugh, it just hurt my heart! It’s hard for me to even think about it. Tucker didn’t move at all he just squeezed my hands so tight I thought they were going to break…… and then it was over. No crying, no screaming, or kicking… he just relaxed and breathed and hugged me and then we watched cartoons, and he was fine. I’m the freaking out mom saying- what can I get you? What do you want? Need? Food? Candy? Drinks? He was like- no, no, no… mom, can’t I just watch my cartoons? I’m like- well sure…. Of course isn’t there SOMETHING I can do? He said: Yes, could you turn up the TV I can’t hear it over your taking. HUMMMMMMM… I think he’s trying to tell me something…..
So we were getting ready to discharge and Tucker spiked a fever…… OH GOODNESS… did you guys know that if a cancer kid has a fever they get an automatic 48 hour stay at the hospital???? So this happened on Thursday the day we were scheduled to discharge….. can you imagine my frustration??? Well the doc said one of the side effects of the “soup” is a fever- I said is it because of all the extra hot Tabasco sauce you put in the damn soup?? And they actually said “yes” and since it is a side effect, they let us go home- hurrrrrray! BUT (isn’t there always a but?) YOU CAN’T LEAVE WITHOUT DESERT. Um, no thanks we are full. Oh? You weren’t asking? I figured….. Fine then, what’s for desert? Neupogen….. yummy Neupogen… can’t we just have cheese cake?
Neupogen is a nifty “desert” that makes your bone marrow and blood counts recover better & faster after heavy chemo. So when Tucker’s blood counts “crash” after this course of “soup” this will help it recover quickly and reduces his chances of getting food poisoning -eeerrr… I mean… infection. This “desert” sounds to good to be true, what’s the catch? I have to give it to him, at home, for 8 days- a shot for 8 days, and the sweet topping -- its a VERY expensive medicine and it cost me out of my pocket over $300 to pick up. WOW- that’s an EXPENSIVE desert! But thanks to all my wonderful friends and family- and complete strangers who donated- I said, $300? Phish- that’s just chump change… (I’M SO KIDDING MY REACTION WAS QUITE THE OPPOSITE..more like HOLY CRAP ARE YOU FREAKING SERIOUS?!?!).
So they took me through the “training” on how to give my child shots when we get home- loaded us up with 5 MORE pills on top of the 10 he’s already taking and finally sent us home… we got home very very late Thursday night. Everything just seems better when you’re at home. Tucker is happier and relaxed and relieved and I’m SOOOO excited to sleep in a bed & next to my nice warm cuddly cute husband. Justin’s job took him out of state for the same days that we were up at the hospital- he got home on Wednesday night we got home on Thursday night- isn’t that just how it works out sometimes? Its just life.
We are home… ya-ya for home!
Love you all, Amber Justin & Tucker.
Wednesday, March 2, 2011
Tucker’s award…
Every time before they do chemo they have to get blood out of Tucker’s tubes first just to make sure everything is working- well they just came to pull blood for a CBC and sure enough Tucker’s tubes were not pulling back any blood. This has been a continual problem with his tubes ever since we got them. Its not a big deal, its just a pain in all our rear-end. So the nurse tried for 30 minutes- she had Tucker roll over, stand up, sit down, lift arms up, cough, pat his head & rub his stomach, LOL- nothing worked. So she left the room and 5 minutes our Irish bear walked in the room with a big booming TUCKER MAN YOUR NOT BLEEDING! Of course with a huge smile on his face. He came and gave me a big hug and we chit chatted for a while- he wanted to get caught up on his Tucker. All the while trying to get blood out of Tuckers stubborn tubes- well about 15 minutes of Irish trying and trying- he got this serious look on his face and said “Tucker, I need to lay the bed all the way flat and have you flat on your back.” I thought to myself, ya that could work it’s the only position we haven’t tried yet. So Irish got the bed all the way to flat and we lifted up Tucker shirt- then Irish took a 10cc full tube of saline (so that’s just water) and he said “Tucker hold very still….” And he took that saline and held it over Tucker’s belly button and started to FILL UP TUCKER’S BELLY BUTTON WITH SALINE! LOL Tucker started laughing and Irish said “Dude! Don’t laugh! This will mess up my process!!” But Tucker was a laughing and I was laughing (remember Tucker’s belly is huge from the steroids) and Irish got it full to the tippy top and he emptied the saline that was left into the sink- then he took the empty saline tube and sucked up the saline that was in Tucker’s belly button and Irish exclaimed “WOW! 2.5cc’s! Your belly button held 2.5cc’s!! That takes 2nd place!! Congratulations!!!! I had a kid that once held a little over 3cc’s in his belly button so he’s #1, but you took the #2 spot!!!” We were all laughing and laughing and laughing!! So Irish left and came back 5 minutes later and he went and printed Tucker a sign, that he hung proudly on our door- that said Tucker now hold the #2 position for most saline held in a belly button.
Oh Irish, how we love you.
Here is a picture of Tucker’s greatest award….
Love amber & Tucker.
Oh Irish, how we love you.
Here is a picture of Tucker’s greatest award….
Love amber & Tucker.
Tuesday, March 1, 2011
…… And in this corner….. Lets hear it for Tucker!
Ladies & Gentlemen…. In this corner we have Doc-Nurses-Chemo or otherwise known as (and for the sake of this Post) … lets here it for DNC! Aka: Do Not Care; Dude Neither Cat; Dang Nice Car; Don’t Not Can’t; Dingo Nacho Cobra..
LOL I could on & on.
And in THIS corner… the one…. The only- TUCKER! *applause applause* (picture Tucker in a boxing outfit with his gloves on hoping around throwing fake jabs … getting warmed up for the fight!)
*******DING DING DING******** ROUND 1*********
We got up to the hospital today and we went to the 4th floor to be admitted… well due to a full cancer-kids wing (aww.. sad!), we got moved to the 3rd floor it’s the “cancer overflow” portal. I don’t mind- its just me dealing with all of this one thing I don’t care for so much is change- we have always been on the 4th floor, I want to be on the 4th floor (DNC got in a couple jabs). It is what it is- no big deal. In walks DNC (remember Doc’s Nurses Chemo)… and what I thought I knew is nothing compared to what they know (LEFT HOOK punch!) … First Tucker has to get 2 things of different IV’s solutions that both take an hour each to drip before we get the 1st dose of the 3 hour long chemo infusion (jab- jab-jab)- and THEN we get our first dose of the 3 hour chemo .
***FIGHTERS TO YOUR CORNER PLEASE FOR YOUR TIME OUT*****
************************DING DING DIN**** ROUND 2*****
So then DNC said-by the way… did we tell you that we have to give Tucker eye drops every 3 hours on this chemo (Uppercut!!)- I’m like, noooooooooo…why? DNC- well this high amount of chemo can hurt their eyes and make them very irritated. ALSO- there is this little thing we have to look out for, this chemo can possibly have some side effect that deal with his brain (BLIND SIDED DIRTY BELOW THE BELT PUNCH!)- I’m like… what now? What was that? Brain? Problems?
***FIGHTERS TO YOUR CORNER PLEASE FOR YOUR TIME OUT******
(I pull Tucker to the side- Tuc, dude- shake it off- shake it off- those blows were nothing… nothing at all man… we can stay in this fight, we can win this round! You have this fight in the bag! Tucker said: Mom, what are you talking about? You talk about really weird things sometimes and you know you’re really not that funny. I said- RIGHT! GOOD! We are on the same page!! Save the insults for your opponent, but good job practicing on me…Now get back in there and FIGHT FIGHT FIGHT!!)
LOL
*******DING DING DIN****** ROUND 3 *******
Where was I? Oh ya… BRAIN? PROBLEMS? LIKE….??? SUCH AS??? Clarification is needed please. DNC said there is a slight chance of problems- like if he doesn’t remember who he is…he can’t quite function.. he’s not really “HIM” anymore ….
I STARTED TO YELL AT TUCKER: Tucker- you have to BLOCK BETTER! PUT YOUR ARMS UP, COVER-UP YOUR HEAD!! YOU NEED TO BOB AROUND BETTER AND STOP GETTING PUNCHED! Tuck looks at me and just shakes his head- and I do think I saw him roll his eyes…. Hummm…..
DNC said its just something they will be looking for (the brain thing) not something they are really worried about (TUCK GOT A JAB IN-sorta-since this is my post I’ll consider ROUND 3 GOES TO TUCKER!!) lol
***BREAK IT UP BREAK IT UP!!! FIGHTERS TO YOUR CORNERS!!!******
(Tucker, dude, you’re doing great! Good job getting a jab in! Tucker said: Mom, why do you keep calling me dude? I said: FOCUS dude on the fight at hand! LOL)
*****DING DING DING***** ROUND 4
*whew all this boxing is making me hungry!*
DNC- Tucker needs to start eye drops, every 3 hours because this chemo can cause eye infections (Ouch! We felt that UPPERCUT- so much for sleep tonight..)… AND Tucker is going to get a big (Ouch!) shot (Jab jab-ouch!) in this upper thigh AND for 7 days at home you’ll have to give Tucker a shot, 1 shot a day at the same time each day!!
****AND IT’S A KNOCKOUT VICTORY FOR DNC*****************
Ok, well we are all on the same team- we are all fighting the same battle. It’s all for the best. I know… in reality its more like DNC & TUCKER in one corner & CANCER IN THE OTHER!
Tucker is currently on dose #1 of 4- do you wonder what chemo looks like? Here is a picture of Tucker with his chemo. I’m sure more crazy posts will follow this one because this is a great time killer for me, quite frankly its boring up here.
Also, here is our champion, Tucker, on our last LAST day of steroids!!!! Poor little body!
Love you all
Amber & Tucker
Last day of steriods!
LOL I could on & on.
And in THIS corner… the one…. The only- TUCKER! *applause applause* (picture Tucker in a boxing outfit with his gloves on hoping around throwing fake jabs … getting warmed up for the fight!)
*******DING DING DING******** ROUND 1*********
We got up to the hospital today and we went to the 4th floor to be admitted… well due to a full cancer-kids wing (aww.. sad!), we got moved to the 3rd floor it’s the “cancer overflow” portal. I don’t mind- its just me dealing with all of this one thing I don’t care for so much is change- we have always been on the 4th floor, I want to be on the 4th floor (DNC got in a couple jabs). It is what it is- no big deal. In walks DNC (remember Doc’s Nurses Chemo)… and what I thought I knew is nothing compared to what they know (LEFT HOOK punch!) … First Tucker has to get 2 things of different IV’s solutions that both take an hour each to drip before we get the 1st dose of the 3 hour long chemo infusion (jab- jab-jab)- and THEN we get our first dose of the 3 hour chemo .
***FIGHTERS TO YOUR CORNER PLEASE FOR YOUR TIME OUT*****
************************DING DING DIN**** ROUND 2*****
So then DNC said-by the way… did we tell you that we have to give Tucker eye drops every 3 hours on this chemo (Uppercut!!)- I’m like, noooooooooo…why? DNC- well this high amount of chemo can hurt their eyes and make them very irritated. ALSO- there is this little thing we have to look out for, this chemo can possibly have some side effect that deal with his brain (BLIND SIDED DIRTY BELOW THE BELT PUNCH!)- I’m like… what now? What was that? Brain? Problems?
***FIGHTERS TO YOUR CORNER PLEASE FOR YOUR TIME OUT******
(I pull Tucker to the side- Tuc, dude- shake it off- shake it off- those blows were nothing… nothing at all man… we can stay in this fight, we can win this round! You have this fight in the bag! Tucker said: Mom, what are you talking about? You talk about really weird things sometimes and you know you’re really not that funny. I said- RIGHT! GOOD! We are on the same page!! Save the insults for your opponent, but good job practicing on me…Now get back in there and FIGHT FIGHT FIGHT!!)
LOL
*******DING DING DIN****** ROUND 3 *******
Where was I? Oh ya… BRAIN? PROBLEMS? LIKE….??? SUCH AS??? Clarification is needed please. DNC said there is a slight chance of problems- like if he doesn’t remember who he is…he can’t quite function.. he’s not really “HIM” anymore ….
I STARTED TO YELL AT TUCKER: Tucker- you have to BLOCK BETTER! PUT YOUR ARMS UP, COVER-UP YOUR HEAD!! YOU NEED TO BOB AROUND BETTER AND STOP GETTING PUNCHED! Tuck looks at me and just shakes his head- and I do think I saw him roll his eyes…. Hummm…..
DNC said its just something they will be looking for (the brain thing) not something they are really worried about (TUCK GOT A JAB IN-sorta-since this is my post I’ll consider ROUND 3 GOES TO TUCKER!!) lol
***BREAK IT UP BREAK IT UP!!! FIGHTERS TO YOUR CORNERS!!!******
(Tucker, dude, you’re doing great! Good job getting a jab in! Tucker said: Mom, why do you keep calling me dude? I said: FOCUS dude on the fight at hand! LOL)
*****DING DING DING***** ROUND 4
*whew all this boxing is making me hungry!*
DNC- Tucker needs to start eye drops, every 3 hours because this chemo can cause eye infections (Ouch! We felt that UPPERCUT- so much for sleep tonight..)… AND Tucker is going to get a big (Ouch!) shot (Jab jab-ouch!) in this upper thigh AND for 7 days at home you’ll have to give Tucker a shot, 1 shot a day at the same time each day!!
****AND IT’S A KNOCKOUT VICTORY FOR DNC*****************
Ok, well we are all on the same team- we are all fighting the same battle. It’s all for the best. I know… in reality its more like DNC & TUCKER in one corner & CANCER IN THE OTHER!
Tucker is currently on dose #1 of 4- do you wonder what chemo looks like? Here is a picture of Tucker with his chemo. I’m sure more crazy posts will follow this one because this is a great time killer for me, quite frankly its boring up here.
Also, here is our champion, Tucker, on our last LAST day of steroids!!!! Poor little body!
Love you all
Amber & Tucker
Last day of steriods!
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