So last Monday they drew blood on tucker to make sure his ANC was above 500 in order to get chemo, and he didn’t pass his blood counts so we didn’t do chemo on Tuesday. Then on Tuesday at like 5pm I missed a call from Tuckers doc Afify saying that I needed to call first thing in the morning Wednesday to make an appointment to bring Tucker in this week that he needed the chemo (spinal tap chemo) and we needed to go over his MRI. So I called first thing in the morning and we made an appointment for Thursday morning, oh and also they wanted to schedule a bone marrow biopsy. Well that got my heart pounding a little bit- why would they want to check his bone marrow? We already did that in February at it was clean- no cancer…… so why why why now again? Justin and I took Thursday off of work and went up to the oncologist together, it was a very interesting appointment. At one point of the day we had like 4 doctors in the room, it was a little crazy. We got lots of great info, so it was a good thing. Doc Afify confirmed that the MRI showed the AVN damage in both his femur bones, and if it was there then its most likely in other areas of his body, like his shoulder & arms (yes, he has showed symptoms in those places). So the AVN can’t be fixed it’s just damage that will get better over the years, right now the only thing we can do is pain management…. It SUCKS. Also we can’t do steroids again in his treatment- he was due to go through steroids in July, but if we did it would just cause more damage, so that’s a no-go. Doc Afify is researching what we are going to do instead of steroids; she just confirmed the AVN damage last week so she was still scrambling to figure out what to do next. She told me something very interesting, she had gotten in contact with 3 of our nation’s top most respected and experienced childhood Oncologist, she said who are “much older and much wiser” than she is. She was very excited that she has had conferences with these doctors over tucker’s case and they are weighing in on Tucker’s treatment plan. She said they have given her great ideas that she will present to us in June. The most of the ideas are what to do about the ARAC. So they will get us together in a meeting in June sometime to make some “decisions”. But the great news was we know why Tucker is in so much pain, the AVN damage…. Oh that reminds me, they took a bone marrow biopsy also just to make sure his bone marrow is still “clean” with all the pain tucker has had in his legs it was one of two possible problems, either AVN (which they confirmed) or he has relapsed already in his bone marrow (that would cause lots of leg/bone pains)… but they confirmed the AVN so they really don’t think we will have any bone marrow problems, so they are testing it just as a precaution. I’m not to worried about it.
The other doc in the room was Dr Paul, we saw him back in 2007 right when tucker was almost done with his first round of cancer. He’s the child psychologist that is just assigned to the ICS unit and handles only the ICS kids (cancer kids). Back on 07’ he did these big tests on Tucker that were sooo cool, he did tons of tests on him that I can’t even pronounce what they are called, but it’s like the huge IQ tests and well, its hard to explain, but super cool- he wants to test Tucker again and since we have a “baseline” test of him in 07’ now when he retests him we will be able to see if there are any problems with tucker’s brain development with all these cancer treatments and chemos. They also need to get a 2nd baseline of Tucker’s brain before we start radiation on his brain. So I’m looking forward to getting all this testing done, its really very cool and I strongly believe that each kid all over should get these tests done. It shows there strengths and weaknesses- like Tucker’s strength is building stuff, a possible architect builder…. (cool) and his weakness is math. He will never like school and always love recess. LOL
We are scheduled to be admitted for chemo on the 6th for the week, and during that week we will get his “brain” tests done.
Because Tucker was doing so great come Friday he went to school and said goodbye to everybody, it was there last day of school, and Friday night Justin and I packed up Karleen's car and took off to St. George. So. Utah here we come! It was so rainy & icky in No Utah that being in the desert was so nice. We stayed with Justin's brother and sister-in-law, Jeremy & Jealin, with their 2 super ADORABLE kids. We couldn’t do much because Tucker just crashed on their couch the whole time, and he doesn’t do much anyways, but we did get out a little and it was so relaxing. Thank you for letting us come be bums at your home. It was just the break we needed.
We are home now unpacking & relaxing and back in the RAIN-ugh!! I’m so tired of the rain!! Hello, summer? Are you listening?
Love to all, Amber, Justin & Tucker
Monday, May 30, 2011
Tuesday, May 24, 2011
Man (Tucker) vs Wild (cancer)
*Drum Roll Please*
Results are in….
Yes, its for sure AVN going on in Tucker’s legs.
I’m not surprised; nobody can be in that much constant pain and not have something wrong. As Karyn keeps saying over and over again- if something weird, or “not normal” could possible happen to Tucker, its then going to happen to Tucker. It just the kind of kid he is. Weird odd things just happening to him is just his “thing” in this life. Tucker is going to make his own path through this thick jungle of cancer…. *sigh* I wish he would take that nice 4 lane paved highway just over there with all those nice off ramps, and look- Mc Donalds next exit!…. But NOOOOOOOOOOOOO, he has to do this HIS way…. He has to make HIS mark… he has to make HIS path. I feel like I’m on that TV show, MAN VS WILD with super hot.. eerrr, I mean, super awesome Bear Grylls. Bear can’t take that brand new super strong rope bridge that is so sturdy a jeep could drive over it, that’s crossing over the 500 foot drop gorge full of alligators and sharp rocks…. He has to stomp around, gathering veins to make his own bridge, or better yet to repel down the gorge and hand wrestle the alligators, eat there eye balls & then build a huge raft made of nothing but sticks and spit, just to make his way 100 feet across the deadly white water rapids.
And you know who I am in this analogy? Ya, I’m the camera man. I’m all strung up in harnesses, with rope 3 feet thick, I have my safety helmet on and a cell phone in my pocket with a backpack full of food (no eye balls, spiders or any other ICKY thing for me!). I’m just sitting back watching that dummy (Bear, not Tucker… its just an analogy people… LOL )….. risk his life to get over that gorge one way or another, and I’m filming the whole thing thinking, hey THERE IS AN EASIER WAY….DID YA HAPPEN TO CATCH THAT BRIDGE WE JUST PASSED?.
But back to Bear- Heck, knowing Bear he’d repel down the gorge, build the raft, risk the rapids, get to the other side… and then climb back up the gorge just to get to the top and THEN build his own rope bridge- just so he can show you the many dumb ways there are of risking your life if you ever just so happen to find yourself on the edge of a gorge and don’t bother to look to the left, and see the HUGE bridge that all the other people are using.
This is the path that Tucker is taking; he is gathering the vein, making his rope… repelling down the gorge, wrestling the alligator, maybe not eating the eye balls…. Icky- but you see where I’m going with this. I watch Tucker with the same feeling I have while I watch Bear….. OH MY GOSH, Please don’t fall…. Please don’t get bit by the deadly snake… please don’t get close to the alligator… please wear a life vest over the rapids… Please for the love of life- don’t eat anything that’s raw OR alive while eating!- ICKY (that last one is good advise in general… doesn’t really “go” with Tucker’s situation.. its not like I’m giving him raw/alive food to eat or anything.. LOL).
Tucker, my love- as you stomp through this jungle destine to make your own way, please look for the bridge already built, the gorge already crossed, look for the small trickle of a stream vs the white water rapids… please avoid the snakes & alligators, just play with your lovable (yet stinky) dog, Raven. Don’t go in that dark cave, it’s a bad idea- do you see a huge spider? God made them huge for a reason, to make sure you see them so you LEAVE them alone, a gorge is there for a reason, and its not something that you need to cross, that’s why its big. There are other easier ways to go. But no matter what path you take, WE will be on your heels the whole time saying “WHERE IS YOUR LIFE JACKET?! EAT YOUR VEGETABLES! BRUSH YOUR TEETH! DO NOT RIDE YOUR BIKE WITHOUT A HELMET”….. as all great cameraman AKA: moms & dads, do.
Tucker did not have chemo as was scheduled for today. He didn’t pass his blood tests again. His ANC needs to be above 500, and its ZERO. Now we are 2 weeks off of “schedule”. Hopefully next week he will recover enough to move forward.
Love to all, (especially you Bear Grylls!) Amber, Justin & Tucker-bear
Results are in….
Yes, its for sure AVN going on in Tucker’s legs.
I’m not surprised; nobody can be in that much constant pain and not have something wrong. As Karyn keeps saying over and over again- if something weird, or “not normal” could possible happen to Tucker, its then going to happen to Tucker. It just the kind of kid he is. Weird odd things just happening to him is just his “thing” in this life. Tucker is going to make his own path through this thick jungle of cancer…. *sigh* I wish he would take that nice 4 lane paved highway just over there with all those nice off ramps, and look- Mc Donalds next exit!…. But NOOOOOOOOOOOOO, he has to do this HIS way…. He has to make HIS mark… he has to make HIS path. I feel like I’m on that TV show, MAN VS WILD with super hot.. eerrr, I mean, super awesome Bear Grylls. Bear can’t take that brand new super strong rope bridge that is so sturdy a jeep could drive over it, that’s crossing over the 500 foot drop gorge full of alligators and sharp rocks…. He has to stomp around, gathering veins to make his own bridge, or better yet to repel down the gorge and hand wrestle the alligators, eat there eye balls & then build a huge raft made of nothing but sticks and spit, just to make his way 100 feet across the deadly white water rapids.
And you know who I am in this analogy? Ya, I’m the camera man. I’m all strung up in harnesses, with rope 3 feet thick, I have my safety helmet on and a cell phone in my pocket with a backpack full of food (no eye balls, spiders or any other ICKY thing for me!). I’m just sitting back watching that dummy (Bear, not Tucker… its just an analogy people… LOL )….. risk his life to get over that gorge one way or another, and I’m filming the whole thing thinking, hey THERE IS AN EASIER WAY….DID YA HAPPEN TO CATCH THAT BRIDGE WE JUST PASSED?.
But back to Bear- Heck, knowing Bear he’d repel down the gorge, build the raft, risk the rapids, get to the other side… and then climb back up the gorge just to get to the top and THEN build his own rope bridge- just so he can show you the many dumb ways there are of risking your life if you ever just so happen to find yourself on the edge of a gorge and don’t bother to look to the left, and see the HUGE bridge that all the other people are using.
This is the path that Tucker is taking; he is gathering the vein, making his rope… repelling down the gorge, wrestling the alligator, maybe not eating the eye balls…. Icky- but you see where I’m going with this. I watch Tucker with the same feeling I have while I watch Bear….. OH MY GOSH, Please don’t fall…. Please don’t get bit by the deadly snake… please don’t get close to the alligator… please wear a life vest over the rapids… Please for the love of life- don’t eat anything that’s raw OR alive while eating!- ICKY (that last one is good advise in general… doesn’t really “go” with Tucker’s situation.. its not like I’m giving him raw/alive food to eat or anything.. LOL).
Tucker, my love- as you stomp through this jungle destine to make your own way, please look for the bridge already built, the gorge already crossed, look for the small trickle of a stream vs the white water rapids… please avoid the snakes & alligators, just play with your lovable (yet stinky) dog, Raven. Don’t go in that dark cave, it’s a bad idea- do you see a huge spider? God made them huge for a reason, to make sure you see them so you LEAVE them alone, a gorge is there for a reason, and its not something that you need to cross, that’s why its big. There are other easier ways to go. But no matter what path you take, WE will be on your heels the whole time saying “WHERE IS YOUR LIFE JACKET?! EAT YOUR VEGETABLES! BRUSH YOUR TEETH! DO NOT RIDE YOUR BIKE WITHOUT A HELMET”….. as all great cameraman AKA: moms & dads, do.
Tucker did not have chemo as was scheduled for today. He didn’t pass his blood tests again. His ANC needs to be above 500, and its ZERO. Now we are 2 weeks off of “schedule”. Hopefully next week he will recover enough to move forward.
Love to all, (especially you Bear Grylls!) Amber, Justin & Tucker-bear
Sunday, May 22, 2011
Another Tucker MRI
Tucker had an MRI done on Friday for his hips & knees. You all know that from the beginning he has had problems and pains in his legs. The pain ranged from not being able to walk & had a wheelchair, to manageable & can run around for a short period of time before needing to rest. Nobody knows why, its been very frustrating.
The scan on his hip was from the waist down to about the middle of his thigh, and the knee scan was from the knee up to the middle of his leg. So his whole upper leg from the knee caps up to his waist got the MRI. I’m so relieved. We really need answers to his leg problems that have not seem to go away. His walk is different; he has a different gate, very labored and “limping”. So now that we are about 6 weeks out from our last ARC (horrible painful chemo-that they originally thought had caused the leg pain).. and his pain hasn’t gone away, they wanted to get a MRI done and see what’s going on.
Tucker did great! The MRI took about 50 minutes and he didn’t need to be sedated this time. You’ll see if you look really close in the pictures that they put big headphones on him and then some crazy outer space looking goggles, can you believe that through those goggles he got to watch a movie of his choice, which was Shark Tales- always a good choice. Its crazy how far in technology we have come, Tucker got to kick back with crazy goggles and relax.
Dr. Afify said that there is one thing we could possibly be dealing with that would explain a lot…. its a side effect from the steroids called AVN… or : Avascular Necrosis (Osteonecrosis).
WOW, big words there… so here is the WEBMD definition.. Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse. Avascular necrosis most commonly occurs in the upper leg. Other common sites are the upper arm, knees, shoulder, and ankles.
Its goes more in depth than that- but that’s not really important- its not for sure that’s what we are dealing with, its just a possibility. We will find out the results of his MRI on Tuesday. Justin and I are both going to go to this appointment. Dr. Afify said that she had news for us on this Tuesday’s appointment. She has been working hard on the big concern of if we should give Tucker ARC chemo again or not…. She has been doing so much research and contacting other doctors across the country to get help & opinions on Tucker’s case. I’m excited to hear what she has to say & what she found out….. and I’m really nervous about the MRI results. I’m so glad we got the MRI done, Tucker has looked at me more than once since this whole thing started and said “Mom, can’t I just get a whole body scan done so they can find out what’s wrong with me?” Well, now that we got the legs scanned, his whole body has been “scanned”…. Well except for his feet… and we don’t need to scan those to find out they are big & stinky.
Wish us luck on Tuesday, love Amber, Justin & stinky feet Tucker
The scan on his hip was from the waist down to about the middle of his thigh, and the knee scan was from the knee up to the middle of his leg. So his whole upper leg from the knee caps up to his waist got the MRI. I’m so relieved. We really need answers to his leg problems that have not seem to go away. His walk is different; he has a different gate, very labored and “limping”. So now that we are about 6 weeks out from our last ARC (horrible painful chemo-that they originally thought had caused the leg pain).. and his pain hasn’t gone away, they wanted to get a MRI done and see what’s going on.
Tucker did great! The MRI took about 50 minutes and he didn’t need to be sedated this time. You’ll see if you look really close in the pictures that they put big headphones on him and then some crazy outer space looking goggles, can you believe that through those goggles he got to watch a movie of his choice, which was Shark Tales- always a good choice. Its crazy how far in technology we have come, Tucker got to kick back with crazy goggles and relax.
Dr. Afify said that there is one thing we could possibly be dealing with that would explain a lot…. its a side effect from the steroids called AVN… or : Avascular Necrosis (Osteonecrosis).
WOW, big words there… so here is the WEBMD definition.. Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse. Avascular necrosis most commonly occurs in the upper leg. Other common sites are the upper arm, knees, shoulder, and ankles.
Its goes more in depth than that- but that’s not really important- its not for sure that’s what we are dealing with, its just a possibility. We will find out the results of his MRI on Tuesday. Justin and I are both going to go to this appointment. Dr. Afify said that she had news for us on this Tuesday’s appointment. She has been working hard on the big concern of if we should give Tucker ARC chemo again or not…. She has been doing so much research and contacting other doctors across the country to get help & opinions on Tucker’s case. I’m excited to hear what she has to say & what she found out….. and I’m really nervous about the MRI results. I’m so glad we got the MRI done, Tucker has looked at me more than once since this whole thing started and said “Mom, can’t I just get a whole body scan done so they can find out what’s wrong with me?” Well, now that we got the legs scanned, his whole body has been “scanned”…. Well except for his feet… and we don’t need to scan those to find out they are big & stinky.
Wish us luck on Tuesday, love Amber, Justin & stinky feet Tucker
Tuesday, May 17, 2011
What Kind of Neighbor are You?
There are so many different kinds of neighbors out in this world, where do you fall? Are you the neighbor that is more reclusive – you sit in your house, don’t really go out and socialize- but wave when you see who you think might be your neighbor in passing… you think you may know there name, its like Amy? Or maybe Angie…. Something with an A…hummmm….. Maybe you’re more the type of- I know exactly who is on the left of me, the right of me & in front of me- and we exchange Christmas cards every season, and I swear one day I’ll remember their names…
Are you the kind of neighbor that is activity involved? You know who lives in every house for 3 blocks, you know each car, dog, kid, and cat that runs in the “hood”. You lend that helping hand when you see the need, or you do something just because you saw it needed to be done, just to help out. You reach out to everybody around you and let them know, Hey-I’m your neighbor and I’m here to help, you need sugar? Jump start your car? Shovel your drive way? I’m there! AKA: the Mr. Rodger Neighbor- but without the creepy puppets.
When we bought our home we were nervous to meet our neighbors, so we started out by keeping to ourselves but quickly learned that our neighbors ROCK! Directly across from us were Dave & Rita, we soon come to find out how much we had in common. We both had blended families and a love for card games (that Dave cheats at… he HAS to be cheating he wins so much) & BBQ’s. Our kids loved to play with their kids, I loved hanging with Rita & Justin had a blast hanging with Dave. Dave came over and helped with so many demolishing projects that Justin did (and like to give me small heart attacks while pretending to be hurt….), and Rita has called in a panic before when bats were flying out of her house late one night and Dave wasn’t home (Justin couldn’t do anything about it other than look at the bats and say “ya, you sure have bats!” LOL). I know I could call on them at anytime to run out our trash (yep, done it a couple times) if we forgot… even though they have since moved away (sucks!) we still count them as our neighbors & know that at anytime we can call on them for help, advise or a great round of poker. Dave, I know you’re reading this and you’re going to give me a hard time about this- but you guys drop out of the running for the Ultimate award when you moved away… however your still win the AWESOME neighbors award!
Up on the corner of our neighborhood lives our ultimate neighbor, they would be anybody’s ULTIMATE neighbor…. The neighbor that gives all without asking anything in return, that neighbor who came over the other day when we weren’t home to mow our lawn…. That neighbor that cares for our pets each day since we never know when we will be home… That neighbor who has attended almost every fundraiser, or event that we invited them to… that neighbor that opens their home for dinners & New Years Eve party's… and of course… the clincher to the qualifications of being the ultimate neighbor… they even have their 2 girls pick up our dog poop in the backyard. Now ask yourself, would YOU do that for your neighbor? AND THAT’S NOT ALL , They cared so much about us that they even got their families in different states caring about us because of them- Like our neighbors sister Dee Dee who lives in Texas. She sent up cards to Tucker from her church, such wonderful positive inspiring cards for him to read, and then just treated us to a wonderful dinner the other night- and I think we have only meet her one time, she did all of this because her brother, Cary, is our neighbor. Cary, Kamiko (sorry if I spelled it wrong!!),& your twin girls… Rachel & Michelle, you are hereby awarded the Ultimate Neighbor award. ***round of applause*** Please, take a bow! We are so grateful for all you do. You never truly know how much your family means to us.
Many people ask what they can do for us and want to help and if I had any ideas of what they could do. I think the one thing that we can all do is take a lesson from our neighbor, strive to be that ultimate neighbor, (Is it me or am I using the word “neighbor” a lot?) learn from our experience and make every effort to become a better neighbor in your neighborhood. Unless of course your neighbors are SUPER scary looking… then sometimes its better to be safe than sorry… LOL
On to what we all want to hear about…. Tucker. Our super fighter! We had our home nurse come out and draw blood yesterday prior to his chemo today. Tucker’s blood has to be above certain levels in order to get his chemo. Well, Oncology called me last night at 5pm and told me he did not pass. His ANC was at zero, his white cell count was zero and his red cell count was 23 (they transfuse normally around a 28) so he is super low on all counts, and explains why he slept all day Saturday & Sunday. So instead of doing chemo today we are up here for a blood transfusion, yes his vampire side strikes again. Then he gets this week “off” to recover his counts and we will try again for chemo next week. The good news about this is next week we were scheduled for our admission chemo, but it was also the last week of school. Tucker really wanted to be at school for the last week- that is always the party week! So he was scheduled to be in the hospital… UNTIL NOW! Ya!! (boooo for bad blood counts.. but YA for attending school!). Tucker has been in great spirits lately and on Monday (yesterday) attendee school for a full day for the FIRST time since this all began! We were all surprised considering what his blood counts were!
Anyways, we are on our first bag of blood, we will be up here for a while. I love you all and have more to say later.
Amber, Justin & Tucker
Tucker Getting blood
See How Rosey Red My Cheeks Are?
My new favorite food- Strawberry Bannana shakes with LOTS of whip cream!
Are you the kind of neighbor that is activity involved? You know who lives in every house for 3 blocks, you know each car, dog, kid, and cat that runs in the “hood”. You lend that helping hand when you see the need, or you do something just because you saw it needed to be done, just to help out. You reach out to everybody around you and let them know, Hey-I’m your neighbor and I’m here to help, you need sugar? Jump start your car? Shovel your drive way? I’m there! AKA: the Mr. Rodger Neighbor- but without the creepy puppets.
When we bought our home we were nervous to meet our neighbors, so we started out by keeping to ourselves but quickly learned that our neighbors ROCK! Directly across from us were Dave & Rita, we soon come to find out how much we had in common. We both had blended families and a love for card games (that Dave cheats at… he HAS to be cheating he wins so much) & BBQ’s. Our kids loved to play with their kids, I loved hanging with Rita & Justin had a blast hanging with Dave. Dave came over and helped with so many demolishing projects that Justin did (and like to give me small heart attacks while pretending to be hurt….), and Rita has called in a panic before when bats were flying out of her house late one night and Dave wasn’t home (Justin couldn’t do anything about it other than look at the bats and say “ya, you sure have bats!” LOL). I know I could call on them at anytime to run out our trash (yep, done it a couple times) if we forgot… even though they have since moved away (sucks!) we still count them as our neighbors & know that at anytime we can call on them for help, advise or a great round of poker. Dave, I know you’re reading this and you’re going to give me a hard time about this- but you guys drop out of the running for the Ultimate award when you moved away… however your still win the AWESOME neighbors award!
Up on the corner of our neighborhood lives our ultimate neighbor, they would be anybody’s ULTIMATE neighbor…. The neighbor that gives all without asking anything in return, that neighbor who came over the other day when we weren’t home to mow our lawn…. That neighbor that cares for our pets each day since we never know when we will be home… That neighbor who has attended almost every fundraiser, or event that we invited them to… that neighbor that opens their home for dinners & New Years Eve party's… and of course… the clincher to the qualifications of being the ultimate neighbor… they even have their 2 girls pick up our dog poop in the backyard. Now ask yourself, would YOU do that for your neighbor? AND THAT’S NOT ALL , They cared so much about us that they even got their families in different states caring about us because of them- Like our neighbors sister Dee Dee who lives in Texas. She sent up cards to Tucker from her church, such wonderful positive inspiring cards for him to read, and then just treated us to a wonderful dinner the other night- and I think we have only meet her one time, she did all of this because her brother, Cary, is our neighbor. Cary, Kamiko (sorry if I spelled it wrong!!),& your twin girls… Rachel & Michelle, you are hereby awarded the Ultimate Neighbor award. ***round of applause*** Please, take a bow! We are so grateful for all you do. You never truly know how much your family means to us.
Many people ask what they can do for us and want to help and if I had any ideas of what they could do. I think the one thing that we can all do is take a lesson from our neighbor, strive to be that ultimate neighbor, (Is it me or am I using the word “neighbor” a lot?) learn from our experience and make every effort to become a better neighbor in your neighborhood. Unless of course your neighbors are SUPER scary looking… then sometimes its better to be safe than sorry… LOL
On to what we all want to hear about…. Tucker. Our super fighter! We had our home nurse come out and draw blood yesterday prior to his chemo today. Tucker’s blood has to be above certain levels in order to get his chemo. Well, Oncology called me last night at 5pm and told me he did not pass. His ANC was at zero, his white cell count was zero and his red cell count was 23 (they transfuse normally around a 28) so he is super low on all counts, and explains why he slept all day Saturday & Sunday. So instead of doing chemo today we are up here for a blood transfusion, yes his vampire side strikes again. Then he gets this week “off” to recover his counts and we will try again for chemo next week. The good news about this is next week we were scheduled for our admission chemo, but it was also the last week of school. Tucker really wanted to be at school for the last week- that is always the party week! So he was scheduled to be in the hospital… UNTIL NOW! Ya!! (boooo for bad blood counts.. but YA for attending school!). Tucker has been in great spirits lately and on Monday (yesterday) attendee school for a full day for the FIRST time since this all began! We were all surprised considering what his blood counts were!
Anyways, we are on our first bag of blood, we will be up here for a while. I love you all and have more to say later.
Amber, Justin & Tucker
Tucker Getting blood
See How Rosey Red My Cheeks Are?
My new favorite food- Strawberry Bannana shakes with LOTS of whip cream!
Friday, May 6, 2011
Can you see what’s different?
We are on day 4 of our admission chemo & its been… so-so. Tucker has done… just OK. We had a little hiccup with one of his important meds that got left out of his daily pills, and turns out if that one pill is left out and you stop it “cold turkey” then it causes WHOLE BODY PAINS. When we found out the cause, that this little pill wasn’t being given to him, we were all relieved because at least it was an answer to the problem. His thyroid doc said if he doesn’t get this med, daily that its very painful. Now when I found out that he wasn’t getting his med….. I wasn’t pissed (surprised? Me too..) I was relieved, relieved that we had an answer to this problem! For like 24hrs everybody was scratching their heads… wondering, guessing, supposing… I just hate that “we don’t know” type of situation. So to have an answer to a problem is relieving & honestly it taught me a lesson, a lesson of respect, respect Tucker’s pills. This is not the way you want to learn a lesson, but its very good to know what would happen if Tucker didn’t get this one pill….So I see this little pill in a whole new light. Now the mix up here wasn’t the fault of the nurses or doctor’s, they did everything right, it was a mix up on the pharmacy end of things. I’ve been told that the person responsible was “talked to and taken care of”. I don’t know what that means but I know they take stuff like that up here very seriously. So when it was found out that Tucker was missing this pill they gave him “emergency” doses and caught him up. The difference is astounding, since Tuesday Tucker was in to much pain to walk, and the one walk I got him to take he walked like a 80year old man and he only took a few steps before he broke down crying…. Then last night (Thursday, after getting his emergency dose around noon that day) at 10:20 pm Tucker perked right up and said “Mom, we need to go for a walk, now.” I said “Hu? Now? Ummm… oookkkeeeyyyyy….” So we got up and he was walking like a 50 year old man! LOL I mean, it was so much better, longer strides- quicker walk- he talked the whole time- it was great! We stopped by the “treat” room to grab him a snack and just happen to run into another zombie looking mom in there- her and I got to talking and Tucker looked at me and said “Good you meet your friend I’m going back to bed”…. And he turned around and walked back to his room and left me there with this other mom who had the “shell shocked” look. Her son was just diagnosed 4 weeks ago with AML, the difference in the cancer is its in his bone marrow & will need a bone marrow transplant, but they have already found out that a sister was a match. They are all very optimistic about the situation & outcome. I looked at her and said…. Something that I’m sure has more meaning coming from another cancer mom… I said probably what she needed to hear- This will get better, it will get easier- not for a while so just prepare and hang in there, but eventually it does get easier, your still in the “shell shocked” stage- one day very soon you’ll get into a routine and it will become easier. I know exactly how you feel, I have now been there twice- so you need to know, it does get easier. She just started crying and then hugged me really tight. And then right as we were separating back into our rooms I said “Wait, come here really quick, let me show you one thing that you need to get.” I brought her into our room and showed her this sleeping pad that Justin had bought at Smith & Edwards in Ogden. Its like the memory foam pad, its about 2 inches thick and IT’S A LIFE/BACK SAVER! I said to her- go get one of these ASAP, trust me”. She thanked me up and down and went back to her room. Tucker just smiled at me and said “I’m glad you made a friend, she was nice.”
This reminds me of the other day up here we had a parent meeting- it’s a “parent break time” where all the mom’s of the cancer ward get together to swap stories and just, well, talk the talk that only other cancer parents can understand. So we all swapped stories and the mom’s ranged from newly diagnosed mom’s to battles many years into the fight. I got some great pointers on radiation treatment, 2 of the mom’s have already been through it and that is something Tucker will need to do but we haven’t before so I’m always looking for advice from other parents that have already done that. The feeling was interesting… we all looked like zombies but also there was an air of relief in the room- like FINALLY somebody who understands my story. The moment though I’ll never forget is when we were all leaving to get back to our kids- we all looked at each other and said something that has a completely different meaning, and different feeling coming from other mom’s of the same cancer world…. Everybody said GOOD LUCK to each other. I can’t really write about the feeling those 2 words have up here being exchanged from one cancer mom to the other cancer mom- but it’s a feeling so strong, that I walked away with goosebumps. The simple phrase of GOOD LUCK really interrupts to- I hope your child makes it. Many people have said GOOD LUCK to us through both battles of cancer, but the only time that I got hit by the freight train feeling of it- was when it was said to me by these others mom.
It does look like we will get to go home today, with this Methotraxiate chemo we have to wait for his body to “clear” it out of his system before we can go. He is currently at a 1.1 and he needs to be below 0.1 for us to leave.
Here is a picture of my sweet boy……. Can you see what’s different about him? My little boy got his first pair of MEN’s size glasses! I can’t believe it! He’s in size 9men’s shoes, size men’s small for shirt… and he has officially gotten his first pair of men’s frames for glasses. He loves them.
Love to all Amber, Justin & Tucker
This reminds me of the other day up here we had a parent meeting- it’s a “parent break time” where all the mom’s of the cancer ward get together to swap stories and just, well, talk the talk that only other cancer parents can understand. So we all swapped stories and the mom’s ranged from newly diagnosed mom’s to battles many years into the fight. I got some great pointers on radiation treatment, 2 of the mom’s have already been through it and that is something Tucker will need to do but we haven’t before so I’m always looking for advice from other parents that have already done that. The feeling was interesting… we all looked like zombies but also there was an air of relief in the room- like FINALLY somebody who understands my story. The moment though I’ll never forget is when we were all leaving to get back to our kids- we all looked at each other and said something that has a completely different meaning, and different feeling coming from other mom’s of the same cancer world…. Everybody said GOOD LUCK to each other. I can’t really write about the feeling those 2 words have up here being exchanged from one cancer mom to the other cancer mom- but it’s a feeling so strong, that I walked away with goosebumps. The simple phrase of GOOD LUCK really interrupts to- I hope your child makes it. Many people have said GOOD LUCK to us through both battles of cancer, but the only time that I got hit by the freight train feeling of it- was when it was said to me by these others mom.
It does look like we will get to go home today, with this Methotraxiate chemo we have to wait for his body to “clear” it out of his system before we can go. He is currently at a 1.1 and he needs to be below 0.1 for us to leave.
Here is a picture of my sweet boy……. Can you see what’s different about him? My little boy got his first pair of MEN’s size glasses! I can’t believe it! He’s in size 9men’s shoes, size men’s small for shirt… and he has officially gotten his first pair of men’s frames for glasses. He loves them.
Love to all Amber, Justin & Tucker
Tuesday, May 3, 2011
Oh! The stuff you'll sale today!
First to get this ball rolling, to catch everybody up of the events of last week, Justin's middle son Jaiden ended up in Ogden Regional Hospital on Monday with an appendices that perforated! Poor little sick guy. Monday night at like 9 or 10pm they took him into surgery and got rid of that appendix and cleaned up the infection that the perforation had caused. During this time Tucker also had a chemo appointment... so it was interesting going from one hospital to the other... and poor Justin pretty much lived up at Ogden Regional- but i think what worked in his benefit is he knows how to "live the hospital life" thanks to all the hospitals trips we have been through (hum, something to be grateful for?) and are going through with Tucker. So he took up his bag, computer, book & just crashed with Jaiden. He didn't spend every night up there, he traded off with Jaiden's mom- but it was kind of a crazy week for SURE. Finally Jaiden got released on this last Saturday (day of the yard sale) to come home & he came to our house. Jaiden is such a good kid and he was a great trooper for never really having anything medically wrong with him before. Tucker has "learned" to be in the hospital and go without eating and getting poked & stuck with needles and such, so its not SO bad for Tucker- but with this being Jaiden's first time... it was a little rocky at first but he did great & we are so proud of him. I'm sure it helped that he got an overabundance of Lego's to pass the time (his favorite thing).... he actually said that it was better than Christmas! LOL We said.... DON'T DO THIS AGAIN... AND DON'T GET USED TO THIS... THIS IS NOT HOW YOU GET LEGOS... LOL
On to the "little" (using that word VERY loosely) YARD SALE. I got a call around..... about 2pm Saturday (right Mary?) and it was Mary, Braxton's mom, who said... the "little" yard sale was not so much a "little" event.... but they all wanted to come over and have Braxton tell us himself all about the yard sale. At that time Tucker was doing great, Jaiden was crashed on our big chair just home from the hospital & doing great- so i said, sure come on over. About a half hour later Mary & Tom and the whole family plus Jaron came over. The look on Braxton's face was adorable.... he was already trying to talk to me as he walked up our stairs he could hardly contain himself. In fact we didn't even get sat down before Braxton started talking about the day- it was SO cute. So as we were all standing in the kitchen, I looked at Braxton and said "Ok dude, tell me how it went." and he started talking so fast... He said it was crazy and so many people showed up and then he held out this HUGE wad of cash and said "We raised $1750 for Tucker."
my jaw dropped.... Justin looked stunned.... I said.... What did you say? You said, what?
Braxton said.... again.... Here! $1750 for you. and he thrust this huge wad of cash at me......
* stunned.... completely stunned... *
I'm sorry, Mary? Did your son just say $1750?
Justin and I look over at 2 proud parents just beaming... just GLOWING..... and they both started talking....Mary said.... yes, actually it was over $1750 but we let Braxton and Jaron stop at Wal-Mart and get Tucker some Lego sets that he wanted....
Tom & Mary started to tell us about there day, and honestly I can't remember all that was said because I was just stunned... Justin was stunned.... we just stood there like two stunned idiots..... I had Mary write a statement about her version of the yard sale (see below) because i knew there was no way I would remember what she said! But from what i gather they had hundreds of people show up... a steady flow of people... People who wanted only a $5 item, but paid $20 for it.... people who didn't get anything, they just wanted to donate money... it was just absolutely AMAZING...I asked Mary if she took pictures and she said she was just too overwhelmed by people and money and just running around crazy that she totally forgot.. I don't blame her! Roxanne showed up around noon and she took some pictures while she was there. Keep in mind when you see these pictures this was at the end of the sale so the bulk of the stuff was gone.
oh the STUFF that Mary had! People gave her SO MUCH stuff., not only did people donate money, but they donated STUFF to be sold..
I feel like Dr. Seuss version of "Oh! The places you'll go"...It just keeps coming to my head as i think about Braxton & Jaron... So Braxton, Jaron, I made a special thank you version just for you...
*warning* for those of you who have a weak stomach for bad poetry, please look away...
Oh! The stuff you'll sale today!
Congratulations!
Saturday was your day.
You're off to sell stuff!
You're off and away!
You have selling in your head
and socks on your feet.
You can sell anything!
Even the lines on the street
(no, I’m not good at rhyming.. but I’m trying to follow Dr. Seuss, just bear with me.)
Look up and down & look over stuff
And you may even say "what is this fluff?"
You'll find toys and things that jump or ring
Maybe you'll see a door knob or even a swing.
In that pile over there, you may even find
A book with a better rhyme than mine....(LOL!)
Braxton & Jaron your special, & super, your tops!
And you have fantastic & amazing, mom & pop's...
(You had to have seen that one coming..)
You sold & you sold until there were no people in sight,
I was told you were out there at first light.
Braxton & Jaron, how best to describe-
What super heroes you are in Tucker’s life
You 2 are treasures, your gold, your charms!
Boys, you have some great parents on your arms… (does that go? LOL)
Thank you so much for your salesman skill
You guys are too much, you fit the bill.
One day it was pizza the next it was stuff,
You boys are truly diamonds in the rough…
We are so grateful, thankful & amazed
at what special kids you are, & how you were raised
Our hearts are full, they are happy, they sing!
We are so lucky you’re on Tuckers Team
(LOL, not sure how to actually END a poem.. but that was THE END, I know… your relieved…)
Anyways... jeez... what a silly little poem... and I'm all teary eyed because of it...
OK, well I'll wrap this up & stop crying, and leave you with Mary's statement of the "little" not-so-little Yard Sale.
*** love to all, Amber & Justin & Tucker ****
-
From: mary trujillo
Braxton came home from school a month or so ago, and asked if we could
do a fundraiser for Tucker. Tom and I talked it over, and decided a
yard sale would be a good idea. We do a couple a year to de-junk
anyway, and figured we could make a few hundred dollars. I helped
Braxton type up a flier asking for donations of items to sell and he
took it around to all of our neighbors. He also called everyone we
know, asking for donations. Those people talked to other people, who
talked to other people, and next thing we knew our garage was piled
floor to ceiling with stuff! Apparently, we were having the biggest
yard sale ever! Out of the blue, we got a call from a wonderful lady
at Smith's Bakery. She had received his flier from our neighbor and
wondered if we could use some baked goods. Tom told her sure, and when
he went to pick them up, they came out with a pallet of cupcakes.
(Seriously, a whole pallet - that is like hundreds of cupcakes!) And
Mrs. Shipman (Brax and Tucker's teacher) talked to the principal and
she sent out a notice to all of the parents letting them know what we
were doing. We had so many of the teachers and parents come out to
support Tucker and his family. It was awesome! As Amber has said
before, Mrs. Shipman really is the best teacher on the planet and
Quest is a fantastic school!
By mid-week, the forecast was calling for snow and 30 degrees on
Saturday. Yikes! With all of the advertising that had been done, we
had to go ahead anyway, so we started praying for a change in the
weather. Saturday morning we woke up to clear blue skies and a high of
50. We thought the storm had just broken apart, until we found out
later that parts of Salt Lake received close to 10 inches of snow.
Talk about answered prayer!
The response to this yard sale was amazing. From the time we set up
(at 7:00 in the morning!), there was a constant flood of people here.
Brax, his sister, and his friend Jaron set up the bake table, and we
put out a donation can. They spent the whole day working the crowd,
making sure everyone knew they could get a cupcake, cookie, or soda
with any donation. They were determined that no one was getting out of
there without dropping something in that can. I still can't believe
how many cupcakes they "sold" for $40 or $50 dollars! By 3:00 in the
afternoon, almost everything was gone, the kids were on a sugar high,
and we had raised $1770.00 for Tucker, Justin, and Amber.
I am so proud of Braxton for getting the ball rolling on this, and how
hard he worked to make it happen. We want to thank all of you who
supported his efforts and made this a success. We are so grateful for
the opportunity to have seen first hand the incredible generosity of
the community around us. It was amazing!
The next 3 pictures are of the yard sale Roxanne took
Braxton and Jaron giving Tucker the money on Saturday
Mary, Tom Trujillo and Family
On to the "little" (using that word VERY loosely) YARD SALE. I got a call around..... about 2pm Saturday (right Mary?) and it was Mary, Braxton's mom, who said... the "little" yard sale was not so much a "little" event.... but they all wanted to come over and have Braxton tell us himself all about the yard sale. At that time Tucker was doing great, Jaiden was crashed on our big chair just home from the hospital & doing great- so i said, sure come on over. About a half hour later Mary & Tom and the whole family plus Jaron came over. The look on Braxton's face was adorable.... he was already trying to talk to me as he walked up our stairs he could hardly contain himself. In fact we didn't even get sat down before Braxton started talking about the day- it was SO cute. So as we were all standing in the kitchen, I looked at Braxton and said "Ok dude, tell me how it went." and he started talking so fast... He said it was crazy and so many people showed up and then he held out this HUGE wad of cash and said "We raised $1750 for Tucker."
my jaw dropped.... Justin looked stunned.... I said.... What did you say? You said, what?
Braxton said.... again.... Here! $1750 for you. and he thrust this huge wad of cash at me......
* stunned.... completely stunned... *
I'm sorry, Mary? Did your son just say $1750?
Justin and I look over at 2 proud parents just beaming... just GLOWING..... and they both started talking....Mary said.... yes, actually it was over $1750 but we let Braxton and Jaron stop at Wal-Mart and get Tucker some Lego sets that he wanted....
Tom & Mary started to tell us about there day, and honestly I can't remember all that was said because I was just stunned... Justin was stunned.... we just stood there like two stunned idiots..... I had Mary write a statement about her version of the yard sale (see below) because i knew there was no way I would remember what she said! But from what i gather they had hundreds of people show up... a steady flow of people... People who wanted only a $5 item, but paid $20 for it.... people who didn't get anything, they just wanted to donate money... it was just absolutely AMAZING...I asked Mary if she took pictures and she said she was just too overwhelmed by people and money and just running around crazy that she totally forgot.. I don't blame her! Roxanne showed up around noon and she took some pictures while she was there. Keep in mind when you see these pictures this was at the end of the sale so the bulk of the stuff was gone.
oh the STUFF that Mary had! People gave her SO MUCH stuff., not only did people donate money, but they donated STUFF to be sold..
I feel like Dr. Seuss version of "Oh! The places you'll go"...It just keeps coming to my head as i think about Braxton & Jaron... So Braxton, Jaron, I made a special thank you version just for you...
*warning* for those of you who have a weak stomach for bad poetry, please look away...
Oh! The stuff you'll sale today!
Congratulations!
Saturday was your day.
You're off to sell stuff!
You're off and away!
You have selling in your head
and socks on your feet.
You can sell anything!
Even the lines on the street
(no, I’m not good at rhyming.. but I’m trying to follow Dr. Seuss, just bear with me.)
Look up and down & look over stuff
And you may even say "what is this fluff?"
You'll find toys and things that jump or ring
Maybe you'll see a door knob or even a swing.
In that pile over there, you may even find
A book with a better rhyme than mine....(LOL!)
Braxton & Jaron your special, & super, your tops!
And you have fantastic & amazing, mom & pop's...
(You had to have seen that one coming..)
You sold & you sold until there were no people in sight,
I was told you were out there at first light.
Braxton & Jaron, how best to describe-
What super heroes you are in Tucker’s life
You 2 are treasures, your gold, your charms!
Boys, you have some great parents on your arms… (does that go? LOL)
Thank you so much for your salesman skill
You guys are too much, you fit the bill.
One day it was pizza the next it was stuff,
You boys are truly diamonds in the rough…
We are so grateful, thankful & amazed
at what special kids you are, & how you were raised
Our hearts are full, they are happy, they sing!
We are so lucky you’re on Tuckers Team
(LOL, not sure how to actually END a poem.. but that was THE END, I know… your relieved…)
Anyways... jeez... what a silly little poem... and I'm all teary eyed because of it...
OK, well I'll wrap this up & stop crying, and leave you with Mary's statement of the "little" not-so-little Yard Sale.
*** love to all, Amber & Justin & Tucker ****
-
From: mary trujillo
Braxton came home from school a month or so ago, and asked if we could
do a fundraiser for Tucker. Tom and I talked it over, and decided a
yard sale would be a good idea. We do a couple a year to de-junk
anyway, and figured we could make a few hundred dollars. I helped
Braxton type up a flier asking for donations of items to sell and he
took it around to all of our neighbors. He also called everyone we
know, asking for donations. Those people talked to other people, who
talked to other people, and next thing we knew our garage was piled
floor to ceiling with stuff! Apparently, we were having the biggest
yard sale ever! Out of the blue, we got a call from a wonderful lady
at Smith's Bakery. She had received his flier from our neighbor and
wondered if we could use some baked goods. Tom told her sure, and when
he went to pick them up, they came out with a pallet of cupcakes.
(Seriously, a whole pallet - that is like hundreds of cupcakes!) And
Mrs. Shipman (Brax and Tucker's teacher) talked to the principal and
she sent out a notice to all of the parents letting them know what we
were doing. We had so many of the teachers and parents come out to
support Tucker and his family. It was awesome! As Amber has said
before, Mrs. Shipman really is the best teacher on the planet and
Quest is a fantastic school!
By mid-week, the forecast was calling for snow and 30 degrees on
Saturday. Yikes! With all of the advertising that had been done, we
had to go ahead anyway, so we started praying for a change in the
weather. Saturday morning we woke up to clear blue skies and a high of
50. We thought the storm had just broken apart, until we found out
later that parts of Salt Lake received close to 10 inches of snow.
Talk about answered prayer!
The response to this yard sale was amazing. From the time we set up
(at 7:00 in the morning!), there was a constant flood of people here.
Brax, his sister, and his friend Jaron set up the bake table, and we
put out a donation can. They spent the whole day working the crowd,
making sure everyone knew they could get a cupcake, cookie, or soda
with any donation. They were determined that no one was getting out of
there without dropping something in that can. I still can't believe
how many cupcakes they "sold" for $40 or $50 dollars! By 3:00 in the
afternoon, almost everything was gone, the kids were on a sugar high,
and we had raised $1770.00 for Tucker, Justin, and Amber.
I am so proud of Braxton for getting the ball rolling on this, and how
hard he worked to make it happen. We want to thank all of you who
supported his efforts and made this a success. We are so grateful for
the opportunity to have seen first hand the incredible generosity of
the community around us. It was amazing!
The next 3 pictures are of the yard sale Roxanne took
Braxton and Jaron giving Tucker the money on Saturday
Mary, Tom Trujillo and Family
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