(Day 171 Post Transplant)
Showing posts with label Bone Marrow Aspirate. Show all posts
Showing posts with label Bone Marrow Aspirate. Show all posts
Thursday, December 3, 2009
Squeaky Clean Marrow!
Monday, November 9, 2009
2 Years of Hell for 2 Weeks of Joy
(Day 152 Post Transplant)
Hunter and our dog, Bisous (Bee-Zoo)
His new best friend.........I think Bisous is enjoying himself??????? Ha!
I have to start out first by saying that I feel so completely privileged and honored to still be a mom. Hunter is such an incredibly, wonderful blessing that I just absolutely cherish and to still have him in our life right now just tickles me to no end. My heart feels as if it's glowing and I can't stop looking at him and smiling........I have a constant ear to ear grin. The last two weeks have been absolutely amazing. Hunter has improved by leaps and bounds and is obviously turning a well deserved corner. A corner that, for a long time, we weren't sure we'd get the chance to see.
For those that haven't read the update on Facebook, his Cymerism results came back and Hunter is still 100% donor. That was really nice to hear. We will still do another Bone Marrow Aspirate this coming Monday, (Nov. 16th), to check on everything at the marrow level.........but, as of now - Hunter remains cancer free.
For the first time in two years.............Zen and I can take a deep breath. Or maybe 1/2 a deep breath...........at least until the next scare - which, by now, our minds and hearts have learned to remain on constant alert. But, I'll have to tell ya.....just having some peace of mind over the last few days has been so delightful. I almost feel normal.
It's been a really long haul and I finally feel as if we are being rewarded for every last bit of pain and suffering and heartache that we've all had to endure. Hunter's body has been under constant attack basically since last December ..........starting with pneumonia, then a cancer relapse, then the cancer attacking him again, then a tremendous amount of chemo with radiation and every other ailment you can think of topped off with a Bone Marrow Transplant. He hasn't had the chance or the opportunity to feel good for soooooooo long. And it's finally happening. It's truly such a delight to see.
Hunter and his other favorite pet. We caught a frog and kept him as a house guest for about 3 days. Hunter was fascinated. He slept in our bed, hung out with us at meal time........and enjoyed cozy nights by the fire. We found him in our cabbage and nicely placed him back after his visit. He waved goodbye, shed a tear and off he hopped. Very charming that frog.
I keep reliving the memory of being given the option to go home with Hunter when it was looking like his life was about to end and I CAN'T EVEN IMAGINE missing out on the wonderful smiles and togetherness and moments that we've shared as a family over the last two weeks. I am forever grateful that we didn't give up on him. It's like we have our kid back and his little personality is just beaming and he laughs and giggles and cracks himself up throughout the entire day. This is the most we've seen from Hunter EVER. What a sweet surprise he's been. Within 2 weeks, so many of our sad and scary memories have been replaced with really wonderful memories and visuals of Hunter's smile and him wiggling his butt and his sweet, sweet voice. Even with the fleeting moments of sadness and anger realizing what we've been missing out on, we are still filled with such incredible feelings of love and gratefulness and absolute pure joy. Hunter is still here, and he has our hearts to their fullest extent and to see him finally "alive" and well has been so completely refreshing and soooooo much needed for all 3 of us. Yay yay YAY!!!! I applaud Hunter's strength and will to survive and am thrilled we gave birth to such a champion.
Hunter deep in the trenches.........fighting for his life.
As far as Hunter's check-up schedule, we still go to the hospital twice a week for blood draws and transfusions. One of the consistent questions we are asked is "how's he pooping"? It's a very good indicator on how his body is processing food & meds as well as how active his graft-vs-host disease is that he has going on in his gut and upper stomach. We've become very good at describing the lovely textures that come out of Hunter's bottom. For the ease of the doctors getting a quick visual.......we often use food - mash potato, easy gravy is common, melted granola with raisins seems to be a favorite, wet hamburger is another, and Hunter's last creation - stinky tapioca. Good one dad. He is still taking 11 meds in the morning, 3 in the afternoon and 8 in the evening. They consist of steroids to prevent his graft-vs-host disease from flaring up, antibiotics, anti-fungals, one med for high blood pressure, which he most likely has from taking the steroids, and then his calcium, magnesium and potassium to keep his electrolytes in tact. Giving all of these meds used to be a full time job - but now we've seemed to have gotten it down to a system and it's pretty easy to maintain. A job dad gladly handed over to mom. hmmmm.............
This is medicine time at our house. Good fun. The wine in the background is mamma's medicine.
This is one of Hunter's steroid temper tantrums. Really no fun at all. He just lets us have it for about 5 minutes and then he snaps out of it. whooooosh. It's like Gizmo turned mad, insane, Gremlin. He truly goes out of his mind like a crazy person. Thank goodness we love him so much or else we would have dropped him off at someone's door step like 3 weeks ago!
In addition to his meds, Zen and I also decided to hit Hunter with some herbs when we got the original report back that they spotted a troublesome Trisomy 21 cell. We did a 2 week regimen of Green Tea, Fever Few, Slippery Elm and SC Formula, which is a shark cartilage and reishi mushroom combination. Different amounts on different days depending on how Hunter's body was tolerating everything. He seemed to handle the herbs just fine and it is something that we'll continue to do on a consistent basis. That, thankfully, is a dad job.
Hunter asleep in a wheelchair at one of our clinic visits. He was getting transfused all day long.......and he refuses to stay in a room........so we continue our routine and go around, and around and around.......I'm not kidding. If he's passed out and we stop for a second - he wakes up soooooooo fast and the only thing that comes out of his mouth is "MOM go pwease". hee hee.
Hunter still has his nose hose, which we now only use for medications. It's so much easier to just stick all 22 of those meds in a tube, rather than have to mix them in pudding and have to coerce Hunter into eating some yum yum 3x a day, which is what we used to do. Made medicine time so less desirable. Hunter........needless to say..........will no longer open his mouth for chocolate pudding.......no matter what.
Hunter with his nose hose and his swollen game face on. Dad took him to the zoo and he took his train ride very seriously that day.
It's pretty funny the number of stares Hunter gets from people walking by when we are out in public.......I guess most people have never really seen a 3 year old with a nose hose and sometimes a donald duck and mickey mouse mask, and on extra paranoid days - the bubble stroller cover.............which officially makes him the traveling "boy in the bubble". I am sure I would stare as well out of pure curiosity, if it wasn't my kid......but, it would be nice to have another one of those flyers to hand out to people so that they know that they are walking by and witnessing a miracle. Maybe they can tell now by the huge smile on my face that doesn't seem to go away.
Hunter hiding in one of our cupboards after terrorizing the house all day long.
Zen and I almost forgot what it was like to be parents of a toddler. He hadn't really moved for the last 3 1/2 months! He wasn't crawling or walking. He definitely wasn't dancing. We had to carry him everywhere we went and man has he grown.......he's a heavy sack to pick up these days. He had to re-learn so many little things and get the muscle strength back for so many simple tasks. He just took his first steps on Halloween and it was such a nice reminder that Hunter used to be REALLY active. So much fun to see him up and around.........not to mention we've noticed how TALL he's gotten. WOW. He's grown so much over the last 6 months and it was hard to tell because he was always sitting or laying down!!
Hunter's Birthday and Life Celebration. It was a lovely and much enjoyed day.
Hunter and our dog, Bisous (Bee-Zoo)
His new best friend.........I think Bisous is enjoying himself??????? Ha!
I have to start out first by saying that I feel so completely privileged and honored to still be a mom. Hunter is such an incredibly, wonderful blessing that I just absolutely cherish and to still have him in our life right now just tickles me to no end. My heart feels as if it's glowing and I can't stop looking at him and smiling........I have a constant ear to ear grin. The last two weeks have been absolutely amazing. Hunter has improved by leaps and bounds and is obviously turning a well deserved corner. A corner that, for a long time, we weren't sure we'd get the chance to see.
For those that haven't read the update on Facebook, his Cymerism results came back and Hunter is still 100% donor. That was really nice to hear. We will still do another Bone Marrow Aspirate this coming Monday, (Nov. 16th), to check on everything at the marrow level.........but, as of now - Hunter remains cancer free.
For the first time in two years.............Zen and I can take a deep breath. Or maybe 1/2 a deep breath...........at least until the next scare - which, by now, our minds and hearts have learned to remain on constant alert. But, I'll have to tell ya.....just having some peace of mind over the last few days has been so delightful. I almost feel normal.
It's been a really long haul and I finally feel as if we are being rewarded for every last bit of pain and suffering and heartache that we've all had to endure. Hunter's body has been under constant attack basically since last December ..........starting with pneumonia, then a cancer relapse, then the cancer attacking him again, then a tremendous amount of chemo with radiation and every other ailment you can think of topped off with a Bone Marrow Transplant. He hasn't had the chance or the opportunity to feel good for soooooooo long. And it's finally happening. It's truly such a delight to see.
Hunter and his other favorite pet. We caught a frog and kept him as a house guest for about 3 days. Hunter was fascinated. He slept in our bed, hung out with us at meal time........and enjoyed cozy nights by the fire. We found him in our cabbage and nicely placed him back after his visit. He waved goodbye, shed a tear and off he hopped. Very charming that frog.
I keep reliving the memory of being given the option to go home with Hunter when it was looking like his life was about to end and I CAN'T EVEN IMAGINE missing out on the wonderful smiles and togetherness and moments that we've shared as a family over the last two weeks. I am forever grateful that we didn't give up on him. It's like we have our kid back and his little personality is just beaming and he laughs and giggles and cracks himself up throughout the entire day. This is the most we've seen from Hunter EVER. What a sweet surprise he's been. Within 2 weeks, so many of our sad and scary memories have been replaced with really wonderful memories and visuals of Hunter's smile and him wiggling his butt and his sweet, sweet voice. Even with the fleeting moments of sadness and anger realizing what we've been missing out on, we are still filled with such incredible feelings of love and gratefulness and absolute pure joy. Hunter is still here, and he has our hearts to their fullest extent and to see him finally "alive" and well has been so completely refreshing and soooooo much needed for all 3 of us. Yay yay YAY!!!! I applaud Hunter's strength and will to survive and am thrilled we gave birth to such a champion.
Hunter deep in the trenches.........fighting for his life.
As far as Hunter's check-up schedule, we still go to the hospital twice a week for blood draws and transfusions. One of the consistent questions we are asked is "how's he pooping"? It's a very good indicator on how his body is processing food & meds as well as how active his graft-vs-host disease is that he has going on in his gut and upper stomach. We've become very good at describing the lovely textures that come out of Hunter's bottom. For the ease of the doctors getting a quick visual.......we often use food - mash potato, easy gravy is common, melted granola with raisins seems to be a favorite, wet hamburger is another, and Hunter's last creation - stinky tapioca. Good one dad. He is still taking 11 meds in the morning, 3 in the afternoon and 8 in the evening. They consist of steroids to prevent his graft-vs-host disease from flaring up, antibiotics, anti-fungals, one med for high blood pressure, which he most likely has from taking the steroids, and then his calcium, magnesium and potassium to keep his electrolytes in tact. Giving all of these meds used to be a full time job - but now we've seemed to have gotten it down to a system and it's pretty easy to maintain. A job dad gladly handed over to mom. hmmmm.............
This is medicine time at our house. Good fun. The wine in the background is mamma's medicine.
This is one of Hunter's steroid temper tantrums. Really no fun at all. He just lets us have it for about 5 minutes and then he snaps out of it. whooooosh. It's like Gizmo turned mad, insane, Gremlin. He truly goes out of his mind like a crazy person. Thank goodness we love him so much or else we would have dropped him off at someone's door step like 3 weeks ago!
In addition to his meds, Zen and I also decided to hit Hunter with some herbs when we got the original report back that they spotted a troublesome Trisomy 21 cell. We did a 2 week regimen of Green Tea, Fever Few, Slippery Elm and SC Formula, which is a shark cartilage and reishi mushroom combination. Different amounts on different days depending on how Hunter's body was tolerating everything. He seemed to handle the herbs just fine and it is something that we'll continue to do on a consistent basis. That, thankfully, is a dad job.
Hunter asleep in a wheelchair at one of our clinic visits. He was getting transfused all day long.......and he refuses to stay in a room........so we continue our routine and go around, and around and around.......I'm not kidding. If he's passed out and we stop for a second - he wakes up soooooooo fast and the only thing that comes out of his mouth is "MOM go pwease". hee hee.
Hunter still has his nose hose, which we now only use for medications. It's so much easier to just stick all 22 of those meds in a tube, rather than have to mix them in pudding and have to coerce Hunter into eating some yum yum 3x a day, which is what we used to do. Made medicine time so less desirable. Hunter........needless to say..........will no longer open his mouth for chocolate pudding.......no matter what.
Hunter with his nose hose and his swollen game face on. Dad took him to the zoo and he took his train ride very seriously that day.
It's pretty funny the number of stares Hunter gets from people walking by when we are out in public.......I guess most people have never really seen a 3 year old with a nose hose and sometimes a donald duck and mickey mouse mask, and on extra paranoid days - the bubble stroller cover.............which officially makes him the traveling "boy in the bubble". I am sure I would stare as well out of pure curiosity, if it wasn't my kid......but, it would be nice to have another one of those flyers to hand out to people so that they know that they are walking by and witnessing a miracle. Maybe they can tell now by the huge smile on my face that doesn't seem to go away.
Hunter hiding in one of our cupboards after terrorizing the house all day long.
Zen and I almost forgot what it was like to be parents of a toddler. He hadn't really moved for the last 3 1/2 months! He wasn't crawling or walking. He definitely wasn't dancing. We had to carry him everywhere we went and man has he grown.......he's a heavy sack to pick up these days. He had to re-learn so many little things and get the muscle strength back for so many simple tasks. He just took his first steps on Halloween and it was such a nice reminder that Hunter used to be REALLY active. So much fun to see him up and around.........not to mention we've noticed how TALL he's gotten. WOW. He's grown so much over the last 6 months and it was hard to tell because he was always sitting or laying down!!
All of us on Halloween. We carved three pumpkins and all he did aaaaalllllll day long was blow out the candles in the pumpkins and watch the smoke go up. Zen and I didn't seem to care...........It the was the best Halloween we've had in a long time, (Hunter was sick for the last two). So we just sat and smooched all day.
Hunter's stroller ride home on Halloween night. We were all so happy that he walked! It was truly the best Halloween EVER!!
Hunter's stroller ride home on Halloween night. We were all so happy that he walked! It was truly the best Halloween EVER!!
2 Years of Hell for 2 Weeks of Joy.................was it worth it..............you bet your ass it was. And I'd do it all over again if it means we get to keep Hunter for the rest of our lives. Our meaning of life has truly been evaluated time and time again over the last two years. And I'm not really sure we've come up with any answers yet, but I know this..................Hunter is the single most important thing to us right now. He's the first thing we think of when we open our eye's in the mornings and he's the last thing that crosses our mind before we lay our heads down to sleep. Our dreams are sweeter, our days are enlightened and happier and our life feels complete again. So until the next challenge, we're going to try to enjoy this life we've been granted...........another one of those celebration moments where we'll sip the wine and pass the cup! Cheers.
Hunter's Birthday and Life Celebration. It was a lovely and much enjoyed day.
Friday, October 2, 2009
Happiness granted........& happiness taketh away
(109 days Post Transplant)
We found out in clinic on Wed. that they detected a Trisomy 21 cell in Hunter's blood work. They've told us that it could be an active cancer cell.......it could not be. They apparently only found 1........but, unfortunately, that's all it takes. We'll test him again in another month, and apparently the doctors are hoping that his new immune system takes care of it and terminates it on its own.
Sooooooooo not too bad.....just a months worth of stress & terrible heartaches and a constant fighting back of the mental demons that seem to be getting harder and harder to keep further away from the forefront of our minds.
So here's the deal - the Trisomy 21 genetic marker that Hunter has been spotted with is actually the down syndrome chromosone that is prevalent in most down syndrome children. Hunter doesn't carry this cell make-up throughout his entire body.......but his CANCER cells DO. So, in the past, whenever they've spotted the Trisomy 21 cell.............the cancer was usually piggy backing. It's very unusual and another characteristic that makes Hunter's AML Leukemia unique.
Needless to say..........Zen and I were once again devastated and spent most of Wednesday and Thursday confused, sad, randomly crying.......and just plain out of words. I feel as if there are a thousand needles stabbing at my heart on a pretty consistent basis, and those needles are speeding up and getting sharper every time Hunter says "mom", or "daddy" or laughs or shows us something cool or looks at us..........pretty much any interaction that I have with Hunter is slightly hurting right now and it's such a sad, sad, maddening state of mind to have to constantly continue to get out of.
For now we have to continue to focus on that little love of ours and enjoy every last bit of him. We completely realize that. Zen and I keep reminding one another of this simple act and definitely assist each other when one of us spots the other zoning out and about to crash and burn. It's pretty recognizable in our faces now when we are thinking about our life and our son and why we have to fight so hard to keep him alive and how truly unfair this all really is.
We will go to clinic twice next week and like they normally do, they'll draw blood and run labs and look for any additional unusual activity going on. We spoke to one of his doctors before the weekend and she reassured us that THEY are NOT freaking out yet. They feel as if they need to keep a VERY close eye on it, but that one cell just wasn't enough to feel as if Hunter is about to go into a full-on relapse. It is actually common for one or two to be spotted in post bone marrow transplant patients, but in Hunter's case......because of his history and how his cancer presents itself............it could be the devil.
Hunter going in for his Bone Marrow Aspirate, obviously already sedated. It was day 98 post transplant and it was actually on his birthday.........geez.......not such a fun birthday.
Zen and I waiting outside the procedure room waiting to pick him up.
Waiting anxiously for him to wake up.
Off we go..........just another day in the life of Hunter Zen Thawley.
Thursday, July 9, 2009
Colonoscopy..........OUCH......
(Day 24 Post Transplant)
Hunter watching Cookie Monster on the iPhone.
Cookie Monster no longer impressing.
Hunter had his very first Colonoscopy yesterday. Good fun.
The docs were concerned that he might be experiencing a little of the Graft vs. Host disease in his gut based on his "poop" output and some tummy & chest pain. Nothing major and nothing too serious and in fact it's quite common post transplant. It's treated with steroids and most likely just goes away. The doctor that performed the procedure turned over some really wonderful photos of Hunter's insides..........a few sides of him that I have never seen before. Didn't think there were any left??? So now we have just a few more wonderful pics for Hunter's baby book. I'll put those right next to his little foot prints and his little ringlet of hair...............that has now fallen out twice. But good news is that peach fuzz has officially been spotted on his head...so YAY.....his curls will be back soon!
Along with his colonoscopy, they also did a marrow check. His ANC has been above 500 now for 5 days in a row......so that means that his engraftment is complete. Now the marrow procedure will check to see how much has engrafted and will let us know exactly what is going on within the marrow, for example what cells it's making on it's own and the rough percentage of each as far as white cells, red cells and platelets, and to make sure that so far, all of the leukemia is gone.
They put him to sleep around 12:30pm to perform the colonoscopy and marrow and he woke up at about 3pm rearing to go. You'd never know something was just up his "yoo hoo", because he was instantly demanding his cars collection and wanted his YouTube and was wanting to get down off his bed to go play by the windowsill. Of course............nothing phases him anymore.
We should have preliminary results back from both procedures no later than Friday.
He is still throwing up a good bit, can't really keep any of his oral meds down......which is kinda not good. Might have to consider an NG Tube to put up his nose that goes down to his belly to be able to administer all of the meds we are going to have to give him once we go home. Other than that, he's sleeping pretty sound, his days are pretty good and he seems really happy and active for the most part.
Daddy has been banished from the hospital. He had to go to LA for business over this last weekend and he ended up coming back sick. I picked him up from the airport late Monday night and brought him back to the hospital and the nurse immediately sent him home. He's now back at the house and no one will go near him.....not even grandma. He's referred to himself as "the leper". He's quite sad and lonely and feels really bummed that he can't be with Hunter. Yesterday's procedures were the first ones where dad was not there. We miss him terribly and are hoping he gets better soon. He's not aloud back in the hospital until he is 100% better.......so hopefully he bounces back as quickly as Hunter does!
Well just as I'm finishing typing..........the doc came in and confirmed that Hunter does indeed have Graft vs. Host going on in his gut as well as his upper stomach. That explains the pain and discomfort he's been having sometimes throughout the day and night. Steroids start immediately and run the course for 10 days. They feel as if we should see some major improvements by then. A few nurses cheered when they heard about the Graft vs. Host.........another true sign that the Bone Marrow Transplant has worked! WOOO HOOO.......never thought I'd be cheering for ick in the gut...........but YAAAAAYYYYYY!!!!!!!!
Hunter still standing and walking on his tippy toes.
In between iPhone and YouTube time.........he actually does get some reading in...Dr. Seuss is a favorite.
These are his rosy cheecks where the Graft vs. Host is suspect.
The rash on his legs right above his knees which is another indication of Graft vs. Host. It looks like his butt.......but I swear it isn't!!
On our way, traveling in cush cush, to the colonoscopy. If he only knew what was coming....he might not be so relaxed!
About to go under for his procedure. Doesn't seem to care about much as long as he has Strip Weathers in one hand and Wingo on the iPhone.
Hunter watching Cookie Monster on the iPhone.
Cookie Monster no longer impressing.
Hunter had his very first Colonoscopy yesterday. Good fun.
The docs were concerned that he might be experiencing a little of the Graft vs. Host disease in his gut based on his "poop" output and some tummy & chest pain. Nothing major and nothing too serious and in fact it's quite common post transplant. It's treated with steroids and most likely just goes away. The doctor that performed the procedure turned over some really wonderful photos of Hunter's insides..........a few sides of him that I have never seen before. Didn't think there were any left??? So now we have just a few more wonderful pics for Hunter's baby book. I'll put those right next to his little foot prints and his little ringlet of hair...............that has now fallen out twice. But good news is that peach fuzz has officially been spotted on his head...so YAY.....his curls will be back soon!
Along with his colonoscopy, they also did a marrow check. His ANC has been above 500 now for 5 days in a row......so that means that his engraftment is complete. Now the marrow procedure will check to see how much has engrafted and will let us know exactly what is going on within the marrow, for example what cells it's making on it's own and the rough percentage of each as far as white cells, red cells and platelets, and to make sure that so far, all of the leukemia is gone.
They put him to sleep around 12:30pm to perform the colonoscopy and marrow and he woke up at about 3pm rearing to go. You'd never know something was just up his "yoo hoo", because he was instantly demanding his cars collection and wanted his YouTube and was wanting to get down off his bed to go play by the windowsill. Of course............nothing phases him anymore.
We should have preliminary results back from both procedures no later than Friday.
He is still throwing up a good bit, can't really keep any of his oral meds down......which is kinda not good. Might have to consider an NG Tube to put up his nose that goes down to his belly to be able to administer all of the meds we are going to have to give him once we go home. Other than that, he's sleeping pretty sound, his days are pretty good and he seems really happy and active for the most part.
Daddy has been banished from the hospital. He had to go to LA for business over this last weekend and he ended up coming back sick. I picked him up from the airport late Monday night and brought him back to the hospital and the nurse immediately sent him home. He's now back at the house and no one will go near him.....not even grandma. He's referred to himself as "the leper". He's quite sad and lonely and feels really bummed that he can't be with Hunter. Yesterday's procedures were the first ones where dad was not there. We miss him terribly and are hoping he gets better soon. He's not aloud back in the hospital until he is 100% better.......so hopefully he bounces back as quickly as Hunter does!
Well just as I'm finishing typing..........the doc came in and confirmed that Hunter does indeed have Graft vs. Host going on in his gut as well as his upper stomach. That explains the pain and discomfort he's been having sometimes throughout the day and night. Steroids start immediately and run the course for 10 days. They feel as if we should see some major improvements by then. A few nurses cheered when they heard about the Graft vs. Host.........another true sign that the Bone Marrow Transplant has worked! WOOO HOOO.......never thought I'd be cheering for ick in the gut...........but YAAAAAYYYYYY!!!!!!!!
Hunter still standing and walking on his tippy toes.
In between iPhone and YouTube time.........he actually does get some reading in...Dr. Seuss is a favorite.
These are his rosy cheecks where the Graft vs. Host is suspect.
The rash on his legs right above his knees which is another indication of Graft vs. Host. It looks like his butt.......but I swear it isn't!!
On our way, traveling in cush cush, to the colonoscopy. If he only knew what was coming....he might not be so relaxed!
About to go under for his procedure. Doesn't seem to care about much as long as he has Strip Weathers in one hand and Wingo on the iPhone.
Thursday, April 16, 2009
Hoping for a MIRACLE
So Zen and I have decided not to crumble...............but.........having a hard time.
About 2 weeks ago......our biggest fear was the Bone Marrow Transplant. Well it's now changed.
The results from Hunter's Bone Marrow Aspirate came back and apparently the last round of chemo basically did nothing. He still has less than 3% Leukemia in his blood, but the doctors were hoping it would be zero percent after the last round of chemo. The Bone Marrow Transplant is now postponed 35 days due to the fact that there are still traces of disease in Hunter's body.
We've officially reached the point where Hunter's Leukemia has built up a resistance to the chemo's we've been using. It's revved up it's engine with it's shit eating grin and we now have to fight it harder and basically stab it in it's heart and drag it off.
Our only option now is to use an experimental chemo for AML patients called Clofarabine, for this one last round. The doctors here at Doernbecher's have done the research and a Bone Marrow Transplant is much more effective when the patient goes to transplant without ANY traces of disease. So we are going to go another 30 days and try this drug and hope it performs miracles.
We spent every last minute with Hunter over these last two weeks as we possibly could. We had a good mix of fresh air, lots of playing in the dirt and MUD, lots of smiles and lots of love, love, love.
Saturday, April 4, 2009
Loaded Gun
Had a good cry last night. Feels like it lasted for hours. My eyes are still swollen and puffy as I type this morning. Hunter is still asleep.
Basically, Hunter is in for the hardest challenge of his life.
And so are we.
The bottom line is that Hunter has a life threatening disease. His AML Leukemia is extremely aggressive and has now survived all of the chemo that has been used to fight it. Our only option is to go to transplant and replace his marrow and hope that his cancer doesn't return. If his cancer does return after the transplant.........we've been told the options are pretty dismal. (This was the "worst case" scenario Doctor speaking. I politely asked him before the talk if he could make sure that the "best case" scenario Doctor show up to lay out all the truths and he politely told me that he'd bring both).
Aside from the typical, horrid side effects from the chemo and the radiation, Hunter might also experience extreme mouth and stomach sores, fluid overload, severe abdominal pain, liver failure, kidney failure or heart failure. Oh and aside from all of that - it's never really over.
If and when Hunter survives all of this..........as he ages - we'll have to deal with all the other issues of the harsh treatments that he's receiving. He could not experience puberty, (which can be brought on by meds apparently), his growth could be effected, he could have learning disabilities, he will most likely be sterile and won't be able to reproduce and he could have permanent organ damage that could cause serious issues from the huge doses of chemo and radiation that he has and will continue to be treated with.
hmmmmmm...................not so bad.
We were told that since his disease is life threatening, the treatment itself is also life threatening. After transplant, they've given him a 30-50% chance of being completely cured.
Oh and I can't forget the Bridges Team that we will have the pleasure of meeting. I'm sure a lot of you haven't met them yet or even care to. They are the "end of life" care team. We didn't get to meet them yesterday, but apparently next Friday will be our meet and greet. I've never wanted to NOT meet someone so much in my entire life.
Found the tiniest flower to smell.
I feel as if there is a loaded gun pointed right at my heart and it could go off anytime between now and the next 90 days.
I've never felt so lost. It's almost as if I've been in a constant daze for the last 12 hours and I have to keep bringing myself out of it. I'm forever choking back tears. Every day I have to wake up and fight this terrible, frightening feeling in my gut. Sometimes I wake up and just feel as if I'm dying.
From this point on we'll be spending every breathing, waking moment with Hunter.
Zen actually just made me laugh. Wow. What a nice feeling.
Hunter is going to be fine. Zen and I are going to be fine. This is going to be the shittiest time of our lives............but we're deep in the trenches now and we have to get out. We will get out. We've got big diggers............and we're ferocious.
Saturday, February 28, 2009
To HATE, to LOVE
So as I sit here in our whirlwind of hope and fear, certain things randomly cross my mind. So I've decided to express them. In some ways I feel as if I get them out - they won't hang over my head and come back to slap me in the face. I guess this is how I'm choosing to "deal". So I'm just going to be honest and just share this batch of emotions that enhance my days like sweet......and sometimes pungent spice.
I'll start with the lovely list of the things I HATE:
I HATE that my kid has Leukemia. No matter how you phrase it, no matter what day it is, no matter how positive a person can be and no matter what sugar you coat it with.............it sucks.
I HATE thinking of my life without Hunter. So therefore I try not to. I've seriously allowed it to sink in once........but, it was so incredibly painful and deeply, deeply crushing......I couldn't stand it. It was another one of those times when I felt as if I was just going to collapse. Not sure how I would survive that one.
I HATE that we have to return to hospital living on Monday and live there for the next 30 days.
I HATE that I now have a Bone Marrow Transplant file amongst Hunter's baby files.
I HATE how the casual sayings "live in the moment", "live every moment as if it was your last", "enjoy the now" are now my truths.
I HATE those few times when my overwhelming amounts of sadness seem to take me over like hot lava.
I HATE how I now look at every bi-racial person that I pass on the streets as a possible bone marrow donor for Hunter. For whatever reason, I don't think it's that rude or odd to walk up to a complete stranger and ask them for their bone marrow???? Even Obama could be a perfect match....??
I HATE how we are constantly living out of boxes. Between living in the hospital for 8 months last year and then packing up and coming to Oregon and then living on the road for 3 months and then going BACK into the hospital. We've never really unpacked and most of our stuff is STILL in boxes.
I HATE that we are now germiphobes. Because of Hunter's condition, we now wash our hands CONSTANTLY. And when someone sneezes around us, it's as if they just hocked up a loogey and rubbed it in our hands. We get so offended. It's quite funny, but oh so true. When his immune system is low........a common cold could bring on a whole slew of things. No fun. I also now open as many doors as I can with my knuckles and carry my own pen so I never have to use the one at the grocery or the bank or the gas station or the post office. FYI - those pens carry an amazing amount of YUCK.
I HATE that there isn't a cure for Leukemia and that the doctors don't know why children get it in the first place. One doctor basically said that we were just unlucky. huh. One more thing that SUCKS.
I HATE how sometimes my heart truly feels broken.
I HATE how sometimes when I'm looking at Hunter........even if he's super happy.........I still want to cry.
I HATE how I was told on my birthday of this year that Hunter's cancer had come back. We were supposed to be at a delicious dinner that night........instead we were at a hospital sobbing. Happy Birthday.
I HATE feeling so helpless.
I HATE that my sons life dangles in front of me like a carrot.
I HATE how sometimes it seems as if my flow of tears is never going to end.
I HATE how we feel as if we are living in a time warp.
I HATE that even with a bone marrow transplant - there is no guarantee that the cancer won't return.
I HATE that I sometimes already feel like a glass of red wine by 8am..................thank god for MIMOSA'S!!
...............our life doesn't completely suck. We are extremely fortunate and aside from all of this - our lives are perfect. However, Hunter is a HUGE factor in that "perfect" equation.
So now for the things I LOVE:
I LOVE that my kid is alive and that he's one hell of a fighter.
I LOVE that Hunter's in REMISSION
I LOVE that the tears do eventually end..................like my lovely cousin once said, "no one cries forever".
I LOVE all of Hunter's supporters of the Hunter Cause on Facebook. He's only 2 and he's tripled the number of friends I have! He's got somewhere around 500 now.......what????
I LOVE how I can doctor up hospital scrambled eggs to taste like something very delicious. Believe me...........it's really, very hard. Their eggs taste like crap.
I LOVE how I can walk to the hospital cafeteria in my pj's and no one seems to care......or even notice.
I LOVE that Lightning McQueen is Hunter's idol. He's pretty cool.......ka chow!
I LOVE how Hunter's first words were please, and cheese and beach. After his 8 months in the hospital last year.......everyone thought his first words were going to be........what the f**k ????
I LOVE all of the people that are participating in the bone marrow donor drive. My dear friend Jen who put it together and everyone who contributed and helped organize it and everyone that's being tested - WoW. Truly........thank you....from the very, very bottom of my heart.
I LOVE our family and friends and all of the people that have come to our rescue. We would have lost it quite a while back if we didn't have such strong and positive reinforcement from EVERYONE.
I LOVE what Hunter has brought into our lives.
I LOVE how the parents of children with cancer receive a handbook. It defines all of the stages of emotions that we go through. So when I feel like punching the shit out of a wall..........I can easily just go to my little 'ole handbook and have it tell me that this is normal. sweet. almost as satisfying..............but not really.
I LOVE Hunter's smile and his sweet little giggle. They fill me with such warmth and joy.
I LOVE that there is a chance that his cancer will be completely cured after the bone marrow transplant. We'll ride the wave of positive thinking.........always.
I LOVE my husband. He's takes everything in stride...........and he's also pretty sexy. oh yeah......and he rides the hell out of a motorcycle. KA CHOW!
Below is Zen tearin' it up on the beaches of Australia. He still rides wheelies for me.
Some pics of Hunter on his 6 month break last year - enjoying being cancer free. We kept him busy. Had lots to catch up on.
Just sittin'.
Lovin' on dad.
Hittin' Hollywood Blvd.
Met Frank...........wasn't too impressed.
Hunter in San Fran. A little concerned that he could be coyote bait.
Heading towards the Bay.
Back at the warm & cozy hotel.
Sweet sunsets with Dad and his little buddy Sebastian.
Chillin' out in Oregon.
Appreciating fine art in Hood River.
Along the oceanside in California.
Kickin' it in Australia.
Having some fun with dad driving through all the fresh water wash-outs along the ocean. I'll have to admit...........that was super fun.
Camp spot on the beach.
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