Monday, January 28, 2013
Dillon and I spent a good part of the afternoon doing errands, getting groceries, giving a fellow Brent's Place mom a ride to the bank and to grab some dinner for her kiddos. We had been home long enough to get the groceries put away and Dillon was getting the table cleared so he could open a new board game he just got. The phone rings and Dillon answers......I am watching him to see if I should go to the phone or go about my business. He gets a funny look on his face and says, "When... (pause).......what time? Let me ask my mom!!" My curiosity is way high now because I don't even know who he is talking to. Dillon says...."hey mom, wanna go to a Nuggets game tonight at 7? Rachel from downstairs has extra tickets!!!" Mind you the current time was 5:45.
My rational mommy brain is screaming on the inside.....no freakin way....we have been running around all day, you need meds, you need food, it is snowing, there will be rush hour traffic, it is downtown, we will be up too late...blah bah blah blah..... And then out of my mouth pops..."Heck yeah!!!" So we grab water and snacks for the drive, we grab our full snow garb, we grab the med box so D can take pills in the car both coming and going, we rush downstairs to grab the tickets, and off we go.
We are not Nuggets fans and we are not fans of the team they played (Indiana Pacers ) but seeing NBA caliber basketball was super fun. Gearing up for the Celtics sans Rajon Rando (the Pickle's favorite player) who just blew his knee out and won't be playing the rest of the season....darn it!!! Dillon was SOOOO looking forward to seeing him in person.
Clinic is Wednesday this week. They will be checking vitamin D again, in addition to a slew of other labs, as well beginning to taper another med....yahoo!!! Coming in the home stretch. The belly continues to progress!
Monday, January 28, 2013
Saturday, January 26, 2013
Day 129.....fancy lunch and IKEA
Saturday, January 26, 2013
Yesterday Dillon and Nana ventured off to the zoo again. They were able to complete more than half of it...so now Dillon has seen about 3/4 of the animals. He is looking forward to Luca's upcoming visit so he can show his brother all the animals. It is so interesting the allure the animals have on the adolescent boy....it brings out his innocence and pure curiosity....I love that!! I stayed behind and enjoyed some much needed "alone time." I didn't do anything particularly exciting but having the space to just do my own thing for a few hours was lovely.
Today we all went to a very nice Italian place for lunch. It was delicious. Dillon had his usual.....Caesar salad and calamari. He has not been big on sweets lately but the creme brulee was calling his name, so he had that as well. We had a good time.
Then it was off to IKEA. I have never been in an IKEA store. All I can say is "Wow!!"
On the drive home we swung by the Cherry Creek State Park, which is a little lake just off the highway. We found the boat ramp and Dillon ventured out onto the ice to inspect a fish that looked like it had been frozen in mid-jump. There were quite a few fishermen out in the middle of the lake. Who knew there was ice fishing in the middle of this metropolitan area.
Dillon has had a great day. His legs were sore/tired walking through the store after his long walking trip at the zoo yesterday. He is eating and drinking well, only a couple of belly bumps.
Nana is leaving tomorrow. It has been great to have some new energy and added entertainment for Dillon.
Next visitors: Luca is flying in on Thursday and Sean us driving up Friday.
Yesterday Dillon and Nana ventured off to the zoo again. They were able to complete more than half of it...so now Dillon has seen about 3/4 of the animals. He is looking forward to Luca's upcoming visit so he can show his brother all the animals. It is so interesting the allure the animals have on the adolescent boy....it brings out his innocence and pure curiosity....I love that!! I stayed behind and enjoyed some much needed "alone time." I didn't do anything particularly exciting but having the space to just do my own thing for a few hours was lovely.
Today we all went to a very nice Italian place for lunch. It was delicious. Dillon had his usual.....Caesar salad and calamari. He has not been big on sweets lately but the creme brulee was calling his name, so he had that as well. We had a good time.
Then it was off to IKEA. I have never been in an IKEA store. All I can say is "Wow!!"
On the drive home we swung by the Cherry Creek State Park, which is a little lake just off the highway. We found the boat ramp and Dillon ventured out onto the ice to inspect a fish that looked like it had been frozen in mid-jump. There were quite a few fishermen out in the middle of the lake. Who knew there was ice fishing in the middle of this metropolitan area.
Dillon has had a great day. His legs were sore/tired walking through the store after his long walking trip at the zoo yesterday. He is eating and drinking well, only a couple of belly bumps.
Nana is leaving tomorrow. It has been great to have some new energy and added entertainment for Dillon.
Next visitors: Luca is flying in on Thursday and Sean us driving up Friday.
Wednesday, January 23, 2013
Day 126....long days with time for learning and fun
Wednesday, January 23, 2013
I am exhausted tonight because of lack of sleep. The past few nights I have not rested well due to some allergy symptoms that consist of a burning nose, itching ears, and a sinus headache. Now that I figured out what is going on I hope to treat it effectively and get some much needed sleep.
We have begun (not terribly consistently I must admit) to review math and writing skills. Dillon is currently reading 20,000 Leagues Under the Sea, I am reading aloud to him The Hobbit, and I am reading One Hundred Years of Solitude (quite studious of us, don't you think?? :))
Dillon and I went to the Denver Zoo yesterday. It was 63 degrees and sunny; read that as....natural vitamin D supplementation :)). It felt like spring. Dillon was able to walk through about 1/3 of the zoo before his legs decided they had enough. The zoo allows Brent's Place kids and families to enter the zoo for free....so we can go a few times in the next month (weather permitting) and see all of the animals. Also, teachers don't necessarily take kids on field trips to the zoo in the middle of the winter.....so there were not hoards of screaming children (and adults trying to herd the children) blocking all of the viewing areas. It was fairly empty and quiet, which was especially nice at the indoor exhibits.
News on the belly front......every day seems to be a little better than the one before. Dillon has now been without his IV fluids for a week. There is less and less nausea combined with more and more consistent food intake.
Today's clinic news: Dillon gained about a pound in the past week.....GO DILLON!!!!!
Two meds were discontinued today lowering his pill count by 3 each day, which brings the daily total down to a totally reasonable 29 per day (do you hear the sarcasm dripping off that last statement???).
Today Dillon endured PFT (pulmonary function) testing, (those of you with asthma or other lung problems can appreciate what a joy that experience is). He also had an EKG and an echocardiogram today. These are both part of his regular followup care and will happen every 3 months until his 1-year anniversary in September.
His lab work today was great; kidney functions, liver functions, white blood cell count, platelets, hemoglobin, electrolytes; everything was within normal limits for a post-transplant patient. Dillon's immune system is still not functioning particularly well so infection and illness continue to be something we guard against and watch for closely. It takes a year to regain relatively strong immune function and closer to two years to be "back to normal" and fully functioning. At the two year mark we can start the discussion of re-immunization (yes, if we so choose, he has to get all those dreaded shots that he had as a baby and toddler).
Nana is driving up tomorrow and will be here until Sunday. She has not seen Dillon since Christmastime and they are both very excited for some good old fashioned fun together.
Ornery personality....fully intact!!! This evening I reminded Dillon that he promised to trim his nails tonight. With a glint in his eye and a sly little grin on his face he said, "Mom, I had a really hard day....you even said it to Dad AND Nana....so there is just no way I can do my nails tonight." Hahaha...you gotta be kidding me!!! Classic Dillon style....about 10 minutes later, without a word, he was in the bathroom yielding the clippers :))
I am exhausted tonight because of lack of sleep. The past few nights I have not rested well due to some allergy symptoms that consist of a burning nose, itching ears, and a sinus headache. Now that I figured out what is going on I hope to treat it effectively and get some much needed sleep.
We have begun (not terribly consistently I must admit) to review math and writing skills. Dillon is currently reading 20,000 Leagues Under the Sea, I am reading aloud to him The Hobbit, and I am reading One Hundred Years of Solitude (quite studious of us, don't you think?? :))
Dillon and I went to the Denver Zoo yesterday. It was 63 degrees and sunny; read that as....natural vitamin D supplementation :)). It felt like spring. Dillon was able to walk through about 1/3 of the zoo before his legs decided they had enough. The zoo allows Brent's Place kids and families to enter the zoo for free....so we can go a few times in the next month (weather permitting) and see all of the animals. Also, teachers don't necessarily take kids on field trips to the zoo in the middle of the winter.....so there were not hoards of screaming children (and adults trying to herd the children) blocking all of the viewing areas. It was fairly empty and quiet, which was especially nice at the indoor exhibits.
News on the belly front......every day seems to be a little better than the one before. Dillon has now been without his IV fluids for a week. There is less and less nausea combined with more and more consistent food intake.
Today's clinic news: Dillon gained about a pound in the past week.....GO DILLON!!!!!
Two meds were discontinued today lowering his pill count by 3 each day, which brings the daily total down to a totally reasonable 29 per day (do you hear the sarcasm dripping off that last statement???).
Today Dillon endured PFT (pulmonary function) testing, (those of you with asthma or other lung problems can appreciate what a joy that experience is). He also had an EKG and an echocardiogram today. These are both part of his regular followup care and will happen every 3 months until his 1-year anniversary in September.
His lab work today was great; kidney functions, liver functions, white blood cell count, platelets, hemoglobin, electrolytes; everything was within normal limits for a post-transplant patient. Dillon's immune system is still not functioning particularly well so infection and illness continue to be something we guard against and watch for closely. It takes a year to regain relatively strong immune function and closer to two years to be "back to normal" and fully functioning. At the two year mark we can start the discussion of re-immunization (yes, if we so choose, he has to get all those dreaded shots that he had as a baby and toddler).
Nana is driving up tomorrow and will be here until Sunday. She has not seen Dillon since Christmastime and they are both very excited for some good old fashioned fun together.
Ornery personality....fully intact!!! This evening I reminded Dillon that he promised to trim his nails tonight. With a glint in his eye and a sly little grin on his face he said, "Mom, I had a really hard day....you even said it to Dad AND Nana....so there is just no way I can do my nails tonight." Hahaha...you gotta be kidding me!!! Classic Dillon style....about 10 minutes later, without a word, he was in the bathroom yielding the clippers :))
Friday, January 18, 2013
Day 121...quality & quantity
Friday, January 18, 2013
For the past 2 nights Dillon has not needed his IV fluids. He has worked his tail off all day long both yesterday and today to consume a prescribed amount of fluids....and he did it two days in a row. He is so jazzed about not having to be hooked up to the pump at night I think the motivation will provide some momentum and keep him on track, if his belly will cooperate, of course.
We made a trip to Whole Foods earlier this week and we bought a bunch of yummy, healthy, fattening, nutrient dense foods. Dillon has been eating baked potatoes with butter and sour cream, smoked salmon, blueberries, mango, green tea and chai, cucumber dipped in dressing, ice cream, beans and cheese, popcorn with nutritional yeast, ham, spiced cider, blood orange sparkling soda, carrots, a tiny bit of mild green chili in a stew that has beans and hominy (hey, the boy has to get back to his roots), granola, and a few other things that I cannot remember. My point is this.....he is eating a good variety of foods, most of them rich in nutrients, fat, protein, vitamins, carbs, and I believe the quantity is enough to show a favorable result on the scale when we go to clinic on Wednesday. Basically The Pickle eats all day, small amounts spaced out every couple of hours. This evening his bedtime snack was a baked potato.....not ice cream, not pudding, not whipped cream with berries, but a spud....really???
He has two strong cravings that we cannot allow at this point because of his tender tummy....BBQ ribs and Tabasco.
His main aversion is melted cheese....so no pizza, no quesadilla, (which is something he used to practically live on...hahaha), no mac & cheese (however he will eat cheese on a bean buritto or on tacos...go figure).
We are getting outside in the sun to facilitate his vitamin D functioning, as well as shooting some hoops and going for short walks.
Slow and steady wins the race!!!!!
For the past 2 nights Dillon has not needed his IV fluids. He has worked his tail off all day long both yesterday and today to consume a prescribed amount of fluids....and he did it two days in a row. He is so jazzed about not having to be hooked up to the pump at night I think the motivation will provide some momentum and keep him on track, if his belly will cooperate, of course.
We made a trip to Whole Foods earlier this week and we bought a bunch of yummy, healthy, fattening, nutrient dense foods. Dillon has been eating baked potatoes with butter and sour cream, smoked salmon, blueberries, mango, green tea and chai, cucumber dipped in dressing, ice cream, beans and cheese, popcorn with nutritional yeast, ham, spiced cider, blood orange sparkling soda, carrots, a tiny bit of mild green chili in a stew that has beans and hominy (hey, the boy has to get back to his roots), granola, and a few other things that I cannot remember. My point is this.....he is eating a good variety of foods, most of them rich in nutrients, fat, protein, vitamins, carbs, and I believe the quantity is enough to show a favorable result on the scale when we go to clinic on Wednesday. Basically The Pickle eats all day, small amounts spaced out every couple of hours. This evening his bedtime snack was a baked potato.....not ice cream, not pudding, not whipped cream with berries, but a spud....really???
He has two strong cravings that we cannot allow at this point because of his tender tummy....BBQ ribs and Tabasco.
His main aversion is melted cheese....so no pizza, no quesadilla, (which is something he used to practically live on...hahaha), no mac & cheese (however he will eat cheese on a bean buritto or on tacos...go figure).
We are getting outside in the sun to facilitate his vitamin D functioning, as well as shooting some hoops and going for short walks.
Slow and steady wins the race!!!!!
Wednesday, January 16, 2013
Day 119......we have a plan!!!!
Wednesday, January 16, 2013
.....deep breath in before I plunge into this mass o' info.....
So the vitamin D level recheck came back finally. Dillon's level is 9. The first time around it was undetectable. When most kids go to the doctor and get a vitamin D level checked a 25 would be considered low and in need of a supplement....so 9 is EXTREME. When a "regular" person is told to take a vitamin D supplement they are usually given 400 I.U. per day. Dillon is taking 3,000 and could go as high as 15,000 if his body does not respond within the first month to the 3,000. One of the main side effects of raising the vitamin D too quickly is seizures. You knew there had to be something bad, right. We cannot just get a treatment and go about our lives....we constantly have to add these freaky scary side effects to our list of stuff that we are watching for. Calcium was also low and that is supplemented with 1,000 mg three times a day for a few weeks. The other low blood level was zinc and that is being supplemented as well. It is just 15 mg a day, which is actually a small amount, so this one is less toxic on his system than the vitamin D supplement.
Now to the bones. His x-ray series came back showing low bone density, but not at a dangerous level, not at a "break a bone if you trip and fall" type of level. The cause for the low bone density is complex: One is that he was basically bed-bound for weeks at a time beginning in May. He had spurts of being up and about but if you add up the number of days that he was in bed so sick he couldn't even walk all the way to the bathroom......it is a lot and his bones really missed the weight-bearing exercise; in addition to the lack of sunshine exposure for the past 8 months. Second is his nutritional status. Obviously not eating at all for weeks and then continuing to eat a very limited amount of calories and nutrients for months on end (which is still continuing) his body was not getting what it needed. The IV nutrition that he received in the hospital is not assimilated well by the body so even though he got enough calories to help maintain his weight, his body was still "starved" in a way for nutrition. Now you add the use of steroids both during his treatment at UNM in Albuquerque and the most recent 60-day course here in Denver for the gut GVH and you have a lot of calcium leaching happening....this is one of the main side effects of steroid use. So his actual diagnosis at this point, as far as bones, is osteopenia, which is a couple of steps below osteoporosis.
The vitamin issues could be contributing to his continued nausea, low appetite, and inability to drink enough. With that being said.....if these things do not improve in the next 2 weeks of supplementation then we will be getting some more testing done. The other suspect for the continued belly problems is some of the meds (big surprise )...not just the fact that he has to swallow so many pills multiple times each day, but the actual medications themselves.
Now that the GVH has officially been healed and we know that Dillon won't be going back on steroids.....he gets to begin tapering some of the anti-rejection meds, one of which is notorious for causing belly trouble. So this week his dose was cut in half and next week it will be discontinued altogether. The doctors said that some kids find that a few days after the last dose suddenly their tummy is much improved. So everyone....cross your fingers that this is the scenario for Mr. Pickle. This particular medication is vital and essential to not rejecting the transplant....which is why he was not allowed to taper off until now.
There will be a steady taper of a couple of the other meds over the next month (mind you....he had to add the vitamin D, zinc, and calcium so his actual pill count is in fact it is up by 2, darn it!!)
Over the next month Dillon will also undergo a handful of tests for his lungs, kidneys, heart, ears, eyes, teeth; another bone density check; in addition to another PET scan (which checks Dillon's whole body for any sign of tumor activity....this is just a checkup type of scan, no one expects anything to show up, especially given his most recent bone marrow biopsy results).....plus one more surgery.....the removal of his central line/Broviac!!
After all of this stuff; the tests, the med tapers, the continued work on eating and drinking-----
The current projected date for us to go home is the week of February 18.....after the Celtics basketball game which is on the 19th....the grand finale of our time here in Denver.
The doctors and I discussed all of our options and we decided that this would be the best and most convenient plan for Dillon and the family. This is, of course, if all goes as planned. The date could change so don't mark it down on your calendars just yet. I was so impressed and grateful that the team actually sat down with us, asked us our preferences, our plans, our desires, our fears, and we came up with the schedule for returning home.
People ask me what will happen after we get home....will Dillon be "done"......
Followup once we are back in Santa Fe will be going to UNM every 2 weeks to get checkups and blood work and coming back to Denver monthly for infusions, exams, and blood work. That will continue until his 1-year anniversary in September. I don't know what happens after that :))
.....deep breath in before I plunge into this mass o' info.....
So the vitamin D level recheck came back finally. Dillon's level is 9. The first time around it was undetectable. When most kids go to the doctor and get a vitamin D level checked a 25 would be considered low and in need of a supplement....so 9 is EXTREME. When a "regular" person is told to take a vitamin D supplement they are usually given 400 I.U. per day. Dillon is taking 3,000 and could go as high as 15,000 if his body does not respond within the first month to the 3,000. One of the main side effects of raising the vitamin D too quickly is seizures. You knew there had to be something bad, right. We cannot just get a treatment and go about our lives....we constantly have to add these freaky scary side effects to our list of stuff that we are watching for. Calcium was also low and that is supplemented with 1,000 mg three times a day for a few weeks. The other low blood level was zinc and that is being supplemented as well. It is just 15 mg a day, which is actually a small amount, so this one is less toxic on his system than the vitamin D supplement.
Now to the bones. His x-ray series came back showing low bone density, but not at a dangerous level, not at a "break a bone if you trip and fall" type of level. The cause for the low bone density is complex: One is that he was basically bed-bound for weeks at a time beginning in May. He had spurts of being up and about but if you add up the number of days that he was in bed so sick he couldn't even walk all the way to the bathroom......it is a lot and his bones really missed the weight-bearing exercise; in addition to the lack of sunshine exposure for the past 8 months. Second is his nutritional status. Obviously not eating at all for weeks and then continuing to eat a very limited amount of calories and nutrients for months on end (which is still continuing) his body was not getting what it needed. The IV nutrition that he received in the hospital is not assimilated well by the body so even though he got enough calories to help maintain his weight, his body was still "starved" in a way for nutrition. Now you add the use of steroids both during his treatment at UNM in Albuquerque and the most recent 60-day course here in Denver for the gut GVH and you have a lot of calcium leaching happening....this is one of the main side effects of steroid use. So his actual diagnosis at this point, as far as bones, is osteopenia, which is a couple of steps below osteoporosis.
The vitamin issues could be contributing to his continued nausea, low appetite, and inability to drink enough. With that being said.....if these things do not improve in the next 2 weeks of supplementation then we will be getting some more testing done. The other suspect for the continued belly problems is some of the meds (big surprise )...not just the fact that he has to swallow so many pills multiple times each day, but the actual medications themselves.
Now that the GVH has officially been healed and we know that Dillon won't be going back on steroids.....he gets to begin tapering some of the anti-rejection meds, one of which is notorious for causing belly trouble. So this week his dose was cut in half and next week it will be discontinued altogether. The doctors said that some kids find that a few days after the last dose suddenly their tummy is much improved. So everyone....cross your fingers that this is the scenario for Mr. Pickle. This particular medication is vital and essential to not rejecting the transplant....which is why he was not allowed to taper off until now.
There will be a steady taper of a couple of the other meds over the next month (mind you....he had to add the vitamin D, zinc, and calcium so his actual pill count is in fact it is up by 2, darn it!!)
Over the next month Dillon will also undergo a handful of tests for his lungs, kidneys, heart, ears, eyes, teeth; another bone density check; in addition to another PET scan (which checks Dillon's whole body for any sign of tumor activity....this is just a checkup type of scan, no one expects anything to show up, especially given his most recent bone marrow biopsy results).....plus one more surgery.....the removal of his central line/Broviac!!
After all of this stuff; the tests, the med tapers, the continued work on eating and drinking-----
The current projected date for us to go home is the week of February 18.....after the Celtics basketball game which is on the 19th....the grand finale of our time here in Denver.
The doctors and I discussed all of our options and we decided that this would be the best and most convenient plan for Dillon and the family. This is, of course, if all goes as planned. The date could change so don't mark it down on your calendars just yet. I was so impressed and grateful that the team actually sat down with us, asked us our preferences, our plans, our desires, our fears, and we came up with the schedule for returning home.
People ask me what will happen after we get home....will Dillon be "done"......
Followup once we are back in Santa Fe will be going to UNM every 2 weeks to get checkups and blood work and coming back to Denver monthly for infusions, exams, and blood work. That will continue until his 1-year anniversary in September. I don't know what happens after that :))
Tuesday, January 15, 2013
Day 118....
Tuesday, January 15, 2013
Still waiting for some of the labs. I am holding off on posting anything about the vitamin and bone issues until i have a clearer picture....
Sean, Luca, and Finn just left. The visit was fun and busy and complex emotionally for all the kids. Dillon has a renewed spirit from all the energy that was here. It felt so "normal" to have a friend sleeping over ( the first triple sleep over for the boys...i.e. 3 nights in a row :)))
Hey everyone.....there seems to be a blood and blood product shortage going on in some parts of the county....so please go out and donate blood, or better yet donate platelets!! These precious gems save the lives of kids and adults alike every single day. Bone marrow transplant is not possible without blood transfusions.
Until later....
Still waiting for some of the labs. I am holding off on posting anything about the vitamin and bone issues until i have a clearer picture....
Sean, Luca, and Finn just left. The visit was fun and busy and complex emotionally for all the kids. Dillon has a renewed spirit from all the energy that was here. It felt so "normal" to have a friend sleeping over ( the first triple sleep over for the boys...i.e. 3 nights in a row :)))
Hey everyone.....there seems to be a blood and blood product shortage going on in some parts of the county....so please go out and donate blood, or better yet donate platelets!! These precious gems save the lives of kids and adults alike every single day. Bone marrow transplant is not possible without blood transfusions.
Until later....
Sunday, January 13, 2013
Day 116.....the good and the bad
Sunday, January 13, 2013
Sean and Luca and Dillon's best friend Finn arrived yesterday afternoon (Saturday). Dillon and Finn are so happy to be together after a 5 month absence. They took up right where they left off; laughing, talking, having fun. Dillon has to monitor his energy output and today he told Finn he needed a nap; so Finn and Luca went downstairs to play while Dillon rested. Luca is included in their fun quite often but Sean and I try to pull him aside for some " alone time" and that gives the big boys time alone as well. The apartment sure feels tiny and messy with these 3 extra people.
Ok....test results.
The bone marrow biopsy was PERFECT!!! There are no cancer cells and all of the components that are supposed to be there are. It showed 100% donor cells; which means his old immune system/bone marrow is not being allowed to rear its ugly head and function in any way. This is assurance that it was effectively eradicated and the new immune system is beginning to function.
The upper endoscopy and flexible sigmoidoscopy ( aka, the scopes) showed healthy gut all the way through via both the visual check, as well as the biopsy results. The puzzle piece regarding why he still cannot eat much,drink much, and gets nauseated after meals is still missing. It may partly be related to the below info....so keep reading. However, the GI team may decide to do some more testing on that front.
YAHOO!!!!!!
Now, the bad.....let me start with the fact that this info was dumped in my lap friday evening over the phone by a doc who speaks fast and is not always clear and concise. During the scopes they took a bunch of blood work....things that are not usually tested unless unusual circumstances present themselves, which in Dillon's case with the prolonged trouble with his belly. My best explanation is this.....his vitamin D level is almost nonexistent. People do get low vitamin D but this level is extreme and almost unheard....of course it is...this is Dill Pickle we are talking about....his system has to throw a curve ball every chance it gets :)). He also has low zinc and calcium. Low vitamin D that is either severe or prolonged causes bone problems, as in soft, spongy bones that easily break and can be deformed if allowed to grow under these conditions if they can grow at all. So friday evening, in a snow storm, Dillon and I headed to the hospital to get more labs drawn (there is a remote chance that this crazy low level was lab error), as well as x-rays of his hips, knees, and wrists to evaluate his bones. There is treatment for all of this, namely more pills. We will get the results of the above tests, more information,and a treatment plan on Tuesday....after Finn leaves.
Until then we are carrying on as if all is well, enjoying the days with our visitors, and we will deal with all of this next week.
Sean and Luca and Dillon's best friend Finn arrived yesterday afternoon (Saturday). Dillon and Finn are so happy to be together after a 5 month absence. They took up right where they left off; laughing, talking, having fun. Dillon has to monitor his energy output and today he told Finn he needed a nap; so Finn and Luca went downstairs to play while Dillon rested. Luca is included in their fun quite often but Sean and I try to pull him aside for some " alone time" and that gives the big boys time alone as well. The apartment sure feels tiny and messy with these 3 extra people.
Ok....test results.
The bone marrow biopsy was PERFECT!!! There are no cancer cells and all of the components that are supposed to be there are. It showed 100% donor cells; which means his old immune system/bone marrow is not being allowed to rear its ugly head and function in any way. This is assurance that it was effectively eradicated and the new immune system is beginning to function.
The upper endoscopy and flexible sigmoidoscopy ( aka, the scopes) showed healthy gut all the way through via both the visual check, as well as the biopsy results. The puzzle piece regarding why he still cannot eat much,drink much, and gets nauseated after meals is still missing. It may partly be related to the below info....so keep reading. However, the GI team may decide to do some more testing on that front.
YAHOO!!!!!!
Now, the bad.....let me start with the fact that this info was dumped in my lap friday evening over the phone by a doc who speaks fast and is not always clear and concise. During the scopes they took a bunch of blood work....things that are not usually tested unless unusual circumstances present themselves, which in Dillon's case with the prolonged trouble with his belly. My best explanation is this.....his vitamin D level is almost nonexistent. People do get low vitamin D but this level is extreme and almost unheard....of course it is...this is Dill Pickle we are talking about....his system has to throw a curve ball every chance it gets :)). He also has low zinc and calcium. Low vitamin D that is either severe or prolonged causes bone problems, as in soft, spongy bones that easily break and can be deformed if allowed to grow under these conditions if they can grow at all. So friday evening, in a snow storm, Dillon and I headed to the hospital to get more labs drawn (there is a remote chance that this crazy low level was lab error), as well as x-rays of his hips, knees, and wrists to evaluate his bones. There is treatment for all of this, namely more pills. We will get the results of the above tests, more information,and a treatment plan on Tuesday....after Finn leaves.
Until then we are carrying on as if all is well, enjoying the days with our visitors, and we will deal with all of this next week.
Thursday, January 10, 2013
Day 113....a crazy full week....
Thursday, January10, 2013
Let me get you all caught up.....
**Monday**
The concert was AWESOME!!!!!!
We spent the entire day preparing Dillon for this evening. Basically eating little bits of high calorie foods all throughout the day, drinking as much as possible without causing nausea, and taking an afternoon nap. By our 4 p.m. departure time we were as prepared as we were going to be. We got there very early to avoid the rush-hour traffic on the 2 interstates we had to take to get there, as well as to get a good parking spot so Dillon would not have to walk terribly far in the cold. I did not want him to be worn out before the show even started. Dillon was so excited when we walked into the stadium he was actually trembling with excitement....it was fantastic. "Mom....what if I faint?" "Don't worry Dillon, I'll catch you, just keep breathing!!"
It was a long night and we were both exhausted by the time we got home (close to midnight) but it was worth every ounce of energy. The music was great (although extremely loud...duhhhh its a concert....and we both wore earplugs to protect our ears). Justin Bieber put on a great show. His set, his dancers, the fireworks and smoke...it was fun to watch. Dillon says he will never forget his first concert.....The Biebs with his mom on a cold January Denver night, a gift from a stranger....it was priceless.
**Tuesday**
Bone marrow biopsy day with nothing to eat or drink for 12 hours prior. Dillon's appointment was at 11 a.m. but we had to check-in at 10 a.m. to get an exam, chat with the doctor, get blood work drawn, etc. On the whole Children's Hospital Colorado is extremely well organized and punctual. Most appointments that we go to, be it radiation, a checkup, or a surgery, are right on time with very little waiting. Well, at about 11:45 a.m. we were wondering what the heck was going on because we STILL had not been called in to the procedure room. Dillon was growing increasingly anxious about the procedure the longer we waited. I stepped outside our room to see if I could "flag someone down" to ask why we were having to wait so long. Just about then the nurse came in and said that the little boy that was in the procedure room before Dillon was extremely ill and there were complications and it was just taking a lot longer than expected. Immediately Dillon and I were worried for that child and his family....how scared they must be, how terrible the boy must feel. The nurse brought a sedative and a bed into the room we were waiting in. They got Dillon all cozied up in the bed with a warm blanket and he was able to relax for the next hour while we waited our turn. At 1 p.m. we finally got called in. Dillon, as is true to his nature, was nervous but he handled it all very well and came into the recovery room about an hour later. After the anesthesia wore off and he was able to get up out of the bed, we headed back to the apartment. Results of the bone marrow biopsies take about a week....so you will hear about those when they come in.
Part of Dillon's exam before his bone marrow biopsy included talking about his appetite, his nausea, and his weight. He lost another 3 pounds in the past 5 days....since his appointment last Thursday. The appetite and weight continue to decrease (he has been off of steroids almost a week) and his nausea continues to slowly increase. The decision was made that Dillon needed another upper endoscopy and lower flexible sigmoidoscopy (remember he had this done when he was re-admitted to the hospital after his initial discharge?) This is a procedure done in the OR under general anesthesia. We were scheduled for an office visit with the GI doctor on Wednesday and the procedure on Thursday. Basically, they want to look at Dillon's gut and make sure that the GVH is in fact healed. If it is not, then he goes back on a modified steroid regimen....if it is, then we need to figure out what is causing the set of symptoms that are not allowing him to eat enough to maintain his weight and drink enough to not need IV fluids overnight. The biopsies from the endoscopy and sigmoidoscopy will help with the diagnoses.
We were later informed of the prep regimen that was to take place on Thursday to get ready for the above procedures. Have any of you ever done a prep for a colonoscopy?? If not, let me tell you, it is not a pleasant experience for an adult who feels fine, let alone a child who has been sick to his stomach for months and has trouble drinking any quantity of fluids throughout the day. The purpose of this prep is to completely clean out the entire GI tract....i.e. induce diarrhea until there is nothing left but water. Dillon was extremely upset about having to go yet another 24 hours without eating, in addition to having to take laxatives and drink a bowel stimulant and stool softener concoction every 2 hours all day long. The discomfort, difficulty, and plain old torture continues for my sweet boy.
** Wednesday**
GI doctor at 9:30 a.m. As is the usual case, when we walked in they were ready for us and we hardly had the ipad out before we got called back into the exam room. After a thorough question and answer session...which included many fart and poop jokes (hey, the guy works with guts and butts all day, joking about bodily functions is in his job description)....they cleared Dillon for the procedure and the prep. Home we go to continue the long, tedious, terribly uncomfortable day of slugging down bowel prep and many visits to the bathroom for the rest of the day (Dillon actually took his first dose with his pills before we went to the doctor's appointment). Mind you....he was still expected to take his pills on this terribly empty, hungry stomach, along with the (what seemed like) gallons of bowel prep. He did not get to bed until 10:30 p.m. and was up a couple of times in the night to visit the bathroom. It was a difficult day, to say the least.
**Thursday**
We had to check into the hospital at 7:30 a.m. for the 9 a.m. upper and lower scopes. At 6:30 a.m. when I had to wake Dillon to get ready to go he was nauseous, hungry, tired, and nervous. This procedure is done in the OR under general anesthesia and Dillon's main fear is that he will wake up during the procedure and feel the pain or discomfort that is happening. It has never happened, but that is where his brain goes on each of these procedure days. I am little comfort to him but we try breathing exercises and distraction.....love the ipad for these times. We played several games together during the wait before the procedure and it helped the time pass with less anxiety.
The GI doctor came out about an hour after the procedure began and told me that everything looked good and Dillon did well. There were no obvious problems that she could see, such as ulceration or erosion, so we will have to wait for the pathology/microscopic reports to come back in the next few days before we know what is going on in there. A few minutes later the anesthesiologist came out and told me that Dillon was awake and I could come to the recovery room to be with him....but she was concerned about a cough he had developed DURING the procedure. My heart began racing instantly but Dillon has had a chronic cough since the beginning of his diagnosis so I was not too concerned (at least that is what I told myself)....until I walked into the room and heard the cough. OH MY....that is a terrible sounding cough, nothing like what he had before, and it is constant and unrelenting. I instructed the anesthesiologist to call the BMT doctor and ask their advice because I was terribly concerned by the sound of this cough. The BMT doctors talked to the nurses in the recovery room and then also spoke to me via phone. They wanted to do some tests to rule out anything serious going on (I.e. flu, pneumonia, or aspiration during the procedure). She said we needed to do a nasal wash (which involves sticking a tube up Dillon's nose and sucking out a bunch of mucus from way up in his sinuses), as well as a 2-view chest x-ray. Dillon panicked because the only thing he hates worse than needles is having a tube shoved up his nose with a loud vacuum suction sound coming from it. The nurse was concerned about Dillon's anxiety and I told her that the faster she got it done the better, because the more time he had to think about it the more scared he would get. She whipped out the supplies and did the nasal wash in a very effective and efficient manner....and Dillon immediately calmed down. Now he has to continue recovering from the anesthesia and go downstairs to get a 2-view x-ray. All of this took quite some time and the poor kid was exhausted by the time we got home. He ate a few bites of a lemon bread/pound cake and few sips of apple juice, a handful of pills, and he fell into bed. He slept for 4 hours this afternoon. A new boy emerged from the bedroom.....a smile on his face and ready to eat. After a bowl of cereal and some sparkling grape juice he decided he wanted some miso soup and I insisted on a protein component so he chose chicken lettuce wraps. There is a fantastic Asian restaurant right around the corner that delivers. We enjoyed dinner together (of which he ate only a little, his favorite being the miso soup and some hot green tea) and watched some basketball and cooking shows on T.V.
We did get a call with the results of the nasal wash and the chest x-rays. The nasal wash was negative, so no virus, flu, fungus, nothing. The chest x-ray was completely clear; in fact they compared it to the last chest x-ray he had (which occurred when he was still in the hospital) and they said his lungs are much healthier than they were when he had been basically bedridden for weeks.....so the transplant has not negatively affected his lungs long-term (i.e. no GVH in this organ) and his increased mobility, walking, and activity have healed his lungs beautifully. YEAHHHH!! Oh .....the cough has improved significantly over the past few hours....so they think it was just severe reflux and irritation from the breathing tube and scope that was shoved down his throat today :))
Tomorrow....Friday.....no appointments, no procedures. Hopefully a handful of test results. Dillon's plans for the day..."I am gonna sleep in!!!"
As I re-read this I realize I am rambling a bit and it is a lot of information all at once...maybe jumbled up in the way I presented it. Sorry about that. Your are going to have to muddle through because my "creative genius" is taking the week off :)))
Let me get you all caught up.....
**Monday**
The concert was AWESOME!!!!!!
We spent the entire day preparing Dillon for this evening. Basically eating little bits of high calorie foods all throughout the day, drinking as much as possible without causing nausea, and taking an afternoon nap. By our 4 p.m. departure time we were as prepared as we were going to be. We got there very early to avoid the rush-hour traffic on the 2 interstates we had to take to get there, as well as to get a good parking spot so Dillon would not have to walk terribly far in the cold. I did not want him to be worn out before the show even started. Dillon was so excited when we walked into the stadium he was actually trembling with excitement....it was fantastic. "Mom....what if I faint?" "Don't worry Dillon, I'll catch you, just keep breathing!!"
It was a long night and we were both exhausted by the time we got home (close to midnight) but it was worth every ounce of energy. The music was great (although extremely loud...duhhhh its a concert....and we both wore earplugs to protect our ears). Justin Bieber put on a great show. His set, his dancers, the fireworks and smoke...it was fun to watch. Dillon says he will never forget his first concert.....The Biebs with his mom on a cold January Denver night, a gift from a stranger....it was priceless.
**Tuesday**
Bone marrow biopsy day with nothing to eat or drink for 12 hours prior. Dillon's appointment was at 11 a.m. but we had to check-in at 10 a.m. to get an exam, chat with the doctor, get blood work drawn, etc. On the whole Children's Hospital Colorado is extremely well organized and punctual. Most appointments that we go to, be it radiation, a checkup, or a surgery, are right on time with very little waiting. Well, at about 11:45 a.m. we were wondering what the heck was going on because we STILL had not been called in to the procedure room. Dillon was growing increasingly anxious about the procedure the longer we waited. I stepped outside our room to see if I could "flag someone down" to ask why we were having to wait so long. Just about then the nurse came in and said that the little boy that was in the procedure room before Dillon was extremely ill and there were complications and it was just taking a lot longer than expected. Immediately Dillon and I were worried for that child and his family....how scared they must be, how terrible the boy must feel. The nurse brought a sedative and a bed into the room we were waiting in. They got Dillon all cozied up in the bed with a warm blanket and he was able to relax for the next hour while we waited our turn. At 1 p.m. we finally got called in. Dillon, as is true to his nature, was nervous but he handled it all very well and came into the recovery room about an hour later. After the anesthesia wore off and he was able to get up out of the bed, we headed back to the apartment. Results of the bone marrow biopsies take about a week....so you will hear about those when they come in.
Part of Dillon's exam before his bone marrow biopsy included talking about his appetite, his nausea, and his weight. He lost another 3 pounds in the past 5 days....since his appointment last Thursday. The appetite and weight continue to decrease (he has been off of steroids almost a week) and his nausea continues to slowly increase. The decision was made that Dillon needed another upper endoscopy and lower flexible sigmoidoscopy (remember he had this done when he was re-admitted to the hospital after his initial discharge?) This is a procedure done in the OR under general anesthesia. We were scheduled for an office visit with the GI doctor on Wednesday and the procedure on Thursday. Basically, they want to look at Dillon's gut and make sure that the GVH is in fact healed. If it is not, then he goes back on a modified steroid regimen....if it is, then we need to figure out what is causing the set of symptoms that are not allowing him to eat enough to maintain his weight and drink enough to not need IV fluids overnight. The biopsies from the endoscopy and sigmoidoscopy will help with the diagnoses.
We were later informed of the prep regimen that was to take place on Thursday to get ready for the above procedures. Have any of you ever done a prep for a colonoscopy?? If not, let me tell you, it is not a pleasant experience for an adult who feels fine, let alone a child who has been sick to his stomach for months and has trouble drinking any quantity of fluids throughout the day. The purpose of this prep is to completely clean out the entire GI tract....i.e. induce diarrhea until there is nothing left but water. Dillon was extremely upset about having to go yet another 24 hours without eating, in addition to having to take laxatives and drink a bowel stimulant and stool softener concoction every 2 hours all day long. The discomfort, difficulty, and plain old torture continues for my sweet boy.
** Wednesday**
GI doctor at 9:30 a.m. As is the usual case, when we walked in they were ready for us and we hardly had the ipad out before we got called back into the exam room. After a thorough question and answer session...which included many fart and poop jokes (hey, the guy works with guts and butts all day, joking about bodily functions is in his job description)....they cleared Dillon for the procedure and the prep. Home we go to continue the long, tedious, terribly uncomfortable day of slugging down bowel prep and many visits to the bathroom for the rest of the day (Dillon actually took his first dose with his pills before we went to the doctor's appointment). Mind you....he was still expected to take his pills on this terribly empty, hungry stomach, along with the (what seemed like) gallons of bowel prep. He did not get to bed until 10:30 p.m. and was up a couple of times in the night to visit the bathroom. It was a difficult day, to say the least.
**Thursday**
We had to check into the hospital at 7:30 a.m. for the 9 a.m. upper and lower scopes. At 6:30 a.m. when I had to wake Dillon to get ready to go he was nauseous, hungry, tired, and nervous. This procedure is done in the OR under general anesthesia and Dillon's main fear is that he will wake up during the procedure and feel the pain or discomfort that is happening. It has never happened, but that is where his brain goes on each of these procedure days. I am little comfort to him but we try breathing exercises and distraction.....love the ipad for these times. We played several games together during the wait before the procedure and it helped the time pass with less anxiety.
The GI doctor came out about an hour after the procedure began and told me that everything looked good and Dillon did well. There were no obvious problems that she could see, such as ulceration or erosion, so we will have to wait for the pathology/microscopic reports to come back in the next few days before we know what is going on in there. A few minutes later the anesthesiologist came out and told me that Dillon was awake and I could come to the recovery room to be with him....but she was concerned about a cough he had developed DURING the procedure. My heart began racing instantly but Dillon has had a chronic cough since the beginning of his diagnosis so I was not too concerned (at least that is what I told myself)....until I walked into the room and heard the cough. OH MY....that is a terrible sounding cough, nothing like what he had before, and it is constant and unrelenting. I instructed the anesthesiologist to call the BMT doctor and ask their advice because I was terribly concerned by the sound of this cough. The BMT doctors talked to the nurses in the recovery room and then also spoke to me via phone. They wanted to do some tests to rule out anything serious going on (I.e. flu, pneumonia, or aspiration during the procedure). She said we needed to do a nasal wash (which involves sticking a tube up Dillon's nose and sucking out a bunch of mucus from way up in his sinuses), as well as a 2-view chest x-ray. Dillon panicked because the only thing he hates worse than needles is having a tube shoved up his nose with a loud vacuum suction sound coming from it. The nurse was concerned about Dillon's anxiety and I told her that the faster she got it done the better, because the more time he had to think about it the more scared he would get. She whipped out the supplies and did the nasal wash in a very effective and efficient manner....and Dillon immediately calmed down. Now he has to continue recovering from the anesthesia and go downstairs to get a 2-view x-ray. All of this took quite some time and the poor kid was exhausted by the time we got home. He ate a few bites of a lemon bread/pound cake and few sips of apple juice, a handful of pills, and he fell into bed. He slept for 4 hours this afternoon. A new boy emerged from the bedroom.....a smile on his face and ready to eat. After a bowl of cereal and some sparkling grape juice he decided he wanted some miso soup and I insisted on a protein component so he chose chicken lettuce wraps. There is a fantastic Asian restaurant right around the corner that delivers. We enjoyed dinner together (of which he ate only a little, his favorite being the miso soup and some hot green tea) and watched some basketball and cooking shows on T.V.
We did get a call with the results of the nasal wash and the chest x-rays. The nasal wash was negative, so no virus, flu, fungus, nothing. The chest x-ray was completely clear; in fact they compared it to the last chest x-ray he had (which occurred when he was still in the hospital) and they said his lungs are much healthier than they were when he had been basically bedridden for weeks.....so the transplant has not negatively affected his lungs long-term (i.e. no GVH in this organ) and his increased mobility, walking, and activity have healed his lungs beautifully. YEAHHHH!! Oh .....the cough has improved significantly over the past few hours....so they think it was just severe reflux and irritation from the breathing tube and scope that was shoved down his throat today :))
Tomorrow....Friday.....no appointments, no procedures. Hopefully a handful of test results. Dillon's plans for the day..."I am gonna sleep in!!!"
As I re-read this I realize I am rambling a bit and it is a lot of information all at once...maybe jumbled up in the way I presented it. Sorry about that. Your are going to have to muddle through because my "creative genius" is taking the week off :)))
Monday, January 7, 2013
Day 110......yet another HUGE surprise
Monday, January 7, 2013
Big D has been given another gift of a lifetime........
Dillon and his best buddy love Justin Bieber's music (well most of of it anyway :)). . The buddy got to see a concert in Phoenix just after Big D's transplant. I had not even told Dillon about that at the time.....I knew it would just be too hard to hear and his dear sweet and thoughtful friend did not really talk about it either. He is the kind of friend who instinctively knew how sad D would be that he didn't get to go too....so he did not even share his excitement with Dillon......that must have been extremely hard for him.
I told Dillon a long time ago (way before any of this crazy cancer stuff happened), that if Justin Bieber ever performed near us (i.e. Phoenix, Denver, Dallas) that we would do our best to take him to see the concert.....
I have known about the Denver concert date for months....but I never told Dillon because I had no idea if he would be able to go. So last week after clearing with the docs that if we bleach wipe the seats and he wears his mask at all times and we hand sanitize several times during the show he could go......I posted on Craigslist (mind you this concert has been sold out for quite some time, but there are people scalping tickets online). I posted something to the effect of...if you still have not sold your tickets would you please be willing to let them go at a reasonable price to help fulfill one of Dillon's dreams (and I gave a little background info on our situation). The next day I was contacted by a 13-year-old girl who wanted to GIVE her tickets to Dillon. She figured he would enjoy it more than she would and she felt very strongly about granting Big D this wish. I won't bore you with the rest of the details about how I actually picked up the tickets........but we have tickets in hand and.......
We are going to see The Biebs tonight!!!
Big D has been given another gift of a lifetime........
Dillon and his best buddy love Justin Bieber's music (well most of of it anyway :)). . The buddy got to see a concert in Phoenix just after Big D's transplant. I had not even told Dillon about that at the time.....I knew it would just be too hard to hear and his dear sweet and thoughtful friend did not really talk about it either. He is the kind of friend who instinctively knew how sad D would be that he didn't get to go too....so he did not even share his excitement with Dillon......that must have been extremely hard for him.
I told Dillon a long time ago (way before any of this crazy cancer stuff happened), that if Justin Bieber ever performed near us (i.e. Phoenix, Denver, Dallas) that we would do our best to take him to see the concert.....
I have known about the Denver concert date for months....but I never told Dillon because I had no idea if he would be able to go. So last week after clearing with the docs that if we bleach wipe the seats and he wears his mask at all times and we hand sanitize several times during the show he could go......I posted on Craigslist (mind you this concert has been sold out for quite some time, but there are people scalping tickets online). I posted something to the effect of...if you still have not sold your tickets would you please be willing to let them go at a reasonable price to help fulfill one of Dillon's dreams (and I gave a little background info on our situation). The next day I was contacted by a 13-year-old girl who wanted to GIVE her tickets to Dillon. She figured he would enjoy it more than she would and she felt very strongly about granting Big D this wish. I won't bore you with the rest of the details about how I actually picked up the tickets........but we have tickets in hand and.......
We are going to see The Biebs tonight!!!
Friday, January 4, 2013
Day 107.....WOW.....where do I start
Friday, January 4, 2013
Today's clinic visit was FANTASTIC and it had Dillon's spirits FLYING HIGH all day long!!!!
There is a whole list of changes.....
Number One: IV steroids have been discontinued. YAHHOOOOO!!! With that discontinuation, we will see the side effects that have "accumulated" in his system diminish over the next few weeks (the insomnia, the mood swings, the anxiety, the chipmunk cheeks, to name a few of the external obvious ones).
Number Two: As a result of #1, Dillon gets to stop his IV micafungin (an anti-fungal medication). What this means is NO MORE IV MEDS at home. We continue with the fluids but that is overnight and it is not a medication so we aren't counting that :)) He was given strict instructions at clinic today to DRINK DRINK DRINK.....the nurse actually wrote it into his discharge notes hahaha!!!
Number Three: As a result of #1, Dillon gets to discontinue the yucky mouthwash that is an antibacterial, tastes terrible, and has made his teeth gray (something the dentist has assured us can be buffed off once Dillon is cleared to have dental work when he is 1-year post transplant).
Number Four: As a result of #1, Dillon gets to discontinue nystatin, which was 2 pills twice a day (so that is 4 pills less).
Number Five: Two other meds are being weaned (Zoloft for mood stabilization and amlodapine for blood pressure). They are going to be every other day for a couple of weeks and then those too will be discontinued. The steroid in combination with one of the anti-rejection meds made Dillon's blood pressure quite high; now that the steroid is done the blood pressure should normalize. Dillon has been a model patient and they feel that he is flying through this whole thing with quite high spirits so they are not overly concerned about stopping the Zoloft. The nurses and doctors congratulated our entire family and support team for caring so well for each other and thus for Dillon and his emotional needs. Also, the steroids have a HUGE negative effect on mood....so bye-bye mood medication.
GRAND FINALE: As a result of #1......HE GETS TO STOP THE NOSE SPRAY!!!!!!! Many many many weeks ago (the week before transplant) Dillon was begun on this terrible, horrible, disgusting, painful nose spray. He had to spray it 4 times in each nostril twice a day. He would often cry and/or scream when he used it...every day for the past 100+ days!!!! He dreaded each and every single one of those days. (This is a kid with a history of HATING anything up his nose, even saline solution when he was at the peak of his allergies in Santa Fe). He often told me I did not understand....and indeed I did not. I could only imagine how bad it was and then adding all of the skin sensitivity and the nausea on top of that during the hospitalization it made the whole thing even worse. Well today was the day.....I tried the dreaded nose spray. We had a little bit left of his last bottle. In my nose it went....HOLY CRAP (excuse my language)!!!! I almost cried and I wanted to scream. It burned all the way up into my eyes, under my upper lip, and after a few minutes that sensation crawled down the back of my throat. HUMMMMM , I wonder why Dillon's nose has been running and he has been clearing his throat incessantly for the past zillion days....JEEZE this stuff is bad. What crazy doctor "invented" this stuff and requires kids to use it??? Dillon was pretty pleased to watch my suffering....."See Mom, I was NOT exaggerating!!!" No Mr. Pickle, you were not!!! After that experience I had an idea. I suggested we KILL the last bottle of nose spray.........see below.
Steroids cause suppression of the immune system functioning, which increases the chances of infection. All of the above discontinuations would have happened on day 100....except that Big D was on steroids, which prolonged his need for the extra protection that these medications provided against various infections.
The question of the day....what was more fun for ME.....running over the bottle of nose spray or taking pills OUT of the pill box this evening??? Hummmm, that is a tough one....I think the nose spray wins!!! (Fine print::::There were actually 2 pills added today because of things that will happen in Big D's body as a result of stopping the steroids but they will only be for a month or two.)
Dillon celebrated today's big accomplishment and milestone with a 3-hour gallivant around Denver locating and purchasing (for himself) the perfect pair of basketball socks.....Mission accomplished and Dillon is now ready to take on the court.
Today's clinic visit was FANTASTIC and it had Dillon's spirits FLYING HIGH all day long!!!!
There is a whole list of changes.....
Number One: IV steroids have been discontinued. YAHHOOOOO!!! With that discontinuation, we will see the side effects that have "accumulated" in his system diminish over the next few weeks (the insomnia, the mood swings, the anxiety, the chipmunk cheeks, to name a few of the external obvious ones).
Number Two: As a result of #1, Dillon gets to stop his IV micafungin (an anti-fungal medication). What this means is NO MORE IV MEDS at home. We continue with the fluids but that is overnight and it is not a medication so we aren't counting that :)) He was given strict instructions at clinic today to DRINK DRINK DRINK.....the nurse actually wrote it into his discharge notes hahaha!!!
Number Three: As a result of #1, Dillon gets to discontinue the yucky mouthwash that is an antibacterial, tastes terrible, and has made his teeth gray (something the dentist has assured us can be buffed off once Dillon is cleared to have dental work when he is 1-year post transplant).
Number Four: As a result of #1, Dillon gets to discontinue nystatin, which was 2 pills twice a day (so that is 4 pills less).
Number Five: Two other meds are being weaned (Zoloft for mood stabilization and amlodapine for blood pressure). They are going to be every other day for a couple of weeks and then those too will be discontinued. The steroid in combination with one of the anti-rejection meds made Dillon's blood pressure quite high; now that the steroid is done the blood pressure should normalize. Dillon has been a model patient and they feel that he is flying through this whole thing with quite high spirits so they are not overly concerned about stopping the Zoloft. The nurses and doctors congratulated our entire family and support team for caring so well for each other and thus for Dillon and his emotional needs. Also, the steroids have a HUGE negative effect on mood....so bye-bye mood medication.
GRAND FINALE: As a result of #1......HE GETS TO STOP THE NOSE SPRAY!!!!!!! Many many many weeks ago (the week before transplant) Dillon was begun on this terrible, horrible, disgusting, painful nose spray. He had to spray it 4 times in each nostril twice a day. He would often cry and/or scream when he used it...every day for the past 100+ days!!!! He dreaded each and every single one of those days. (This is a kid with a history of HATING anything up his nose, even saline solution when he was at the peak of his allergies in Santa Fe). He often told me I did not understand....and indeed I did not. I could only imagine how bad it was and then adding all of the skin sensitivity and the nausea on top of that during the hospitalization it made the whole thing even worse. Well today was the day.....I tried the dreaded nose spray. We had a little bit left of his last bottle. In my nose it went....HOLY CRAP (excuse my language)!!!! I almost cried and I wanted to scream. It burned all the way up into my eyes, under my upper lip, and after a few minutes that sensation crawled down the back of my throat. HUMMMMM , I wonder why Dillon's nose has been running and he has been clearing his throat incessantly for the past zillion days....JEEZE this stuff is bad. What crazy doctor "invented" this stuff and requires kids to use it??? Dillon was pretty pleased to watch my suffering....."See Mom, I was NOT exaggerating!!!" No Mr. Pickle, you were not!!! After that experience I had an idea. I suggested we KILL the last bottle of nose spray.........see below.
 |
| Big D and his dreaded enemy |
 |
| Dillon delivering the nose spray to its doom |
 |
| The aftermath of the destruction!! |
 |
| Totally dead nose spray.....never to be seen or used again!!!! |
Steroids cause suppression of the immune system functioning, which increases the chances of infection. All of the above discontinuations would have happened on day 100....except that Big D was on steroids, which prolonged his need for the extra protection that these medications provided against various infections.
The question of the day....what was more fun for ME.....running over the bottle of nose spray or taking pills OUT of the pill box this evening??? Hummmm, that is a tough one....I think the nose spray wins!!! (Fine print::::There were actually 2 pills added today because of things that will happen in Big D's body as a result of stopping the steroids but they will only be for a month or two.)
Dillon celebrated today's big accomplishment and milestone with a 3-hour gallivant around Denver locating and purchasing (for himself) the perfect pair of basketball socks.....Mission accomplished and Dillon is now ready to take on the court.
Tuesday, January 1, 2013
Day 104......2013
Tuesday, January 1, 2013
HAPPY NEW YEAR!!!!
First and foremost, I want to send out an enormous thank you to all of the friends and family who have loved and supported our family with nourishment. You have fed and helped sustain our family for 7 months!!!! The goal was originally set to fulfill the takethemameal.com calendar until the end of the year......and you did it with flying colors. We are honored to have each one of you as key players in making this journey a more healthy and tasty road. Not having to think about what to make for dinner (or lunch or breakfast for that matter) and not having to keep the fridge fully stocked at all times in order to facilitate healthy eating was truly a gift and a blessing for all of us. THANK YOU!!!
Sean went home on Sunday afternoon :((
Luca, Nana, and Grampy went back to Santa Fe today. The apartment is quiet and I miss my little bear so much already. As good as it was for Luca's well-being to be here in Denver with Dillon and I for such an extended period of time.....I believe it is just as good for him to return home to his dad, his pets, his friends, his bed, his school, his neighborhood. When Sean called me this evening, Luca had been home about an hour, and in the background I could hear Luca playing the recorder and singing....by the end of the call he had played a couple more instruments. Sean said he was sort of dancing around and playing each instrument he could get his hands on (we have a lot of percussion and woodwind instruments strewn about the house including flutes, drums, maracas, keyboard, drum set, etc.). This musical act by my sweet one tells me that he is happy to be home and his heart and soul are healthy.
Now for a little blip about the hockey game. We had a blast. We ended up meeting one of the coaches, getting a tour of the stadium and the boys got to high-five the players as they went out onto the ice. This special treat was facilitated by an employee at Brent's Place who has a friend who works for the Denver Cutthroats.
No news or changes for Dillon. His stomach is holding steady with his reduction in steroids. Energy and strength continue to slowly rebound. Clinic this week is on Friday.
HAPPY NEW YEAR!!!!
First and foremost, I want to send out an enormous thank you to all of the friends and family who have loved and supported our family with nourishment. You have fed and helped sustain our family for 7 months!!!! The goal was originally set to fulfill the takethemameal.com calendar until the end of the year......and you did it with flying colors. We are honored to have each one of you as key players in making this journey a more healthy and tasty road. Not having to think about what to make for dinner (or lunch or breakfast for that matter) and not having to keep the fridge fully stocked at all times in order to facilitate healthy eating was truly a gift and a blessing for all of us. THANK YOU!!!
Sean went home on Sunday afternoon :((
Luca, Nana, and Grampy went back to Santa Fe today. The apartment is quiet and I miss my little bear so much already. As good as it was for Luca's well-being to be here in Denver with Dillon and I for such an extended period of time.....I believe it is just as good for him to return home to his dad, his pets, his friends, his bed, his school, his neighborhood. When Sean called me this evening, Luca had been home about an hour, and in the background I could hear Luca playing the recorder and singing....by the end of the call he had played a couple more instruments. Sean said he was sort of dancing around and playing each instrument he could get his hands on (we have a lot of percussion and woodwind instruments strewn about the house including flutes, drums, maracas, keyboard, drum set, etc.). This musical act by my sweet one tells me that he is happy to be home and his heart and soul are healthy.
Now for a little blip about the hockey game. We had a blast. We ended up meeting one of the coaches, getting a tour of the stadium and the boys got to high-five the players as they went out onto the ice. This special treat was facilitated by an employee at Brent's Place who has a friend who works for the Denver Cutthroats.
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| Denver Cutthroat mascot. |
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| Being silly before the game.....do you like Dillon's green wig? |
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| Luca watching the ice preparation before the game |
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| Players stretching before they come onto the ice |
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| Dillon and Luca giving the players a high-five and good luck on their way onto the ice |
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| My Three good looking guys |
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| Face-off. |
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