Saturday, November 10, 2012
The roller coaster ride continues......weeeeeeeeee!!!!!!
First of all, Dillon has had about 18 hours without vomiting. YEAH!!!!! We had a fantastic night with lots of sleep. We went to bed at 10 p.m, woke once in the night for a bathroom visit, and got up at 8 a.m. I am a new person with all that rest. The past couple of days had wiped me out and I am rejuvenated with the sleep. Also, my dad is with Dillon most of the day today so I have several hours to myself at the apartment to add to my rejuvenation.
Big D had his upper and lower endoscopies yesterday. It went without a hitch and he recovered nicely by sleeping all afternoon.
The first set of results are in from the biopsies that were taken. Dillon's gut, in fact, has mild or early GVH. I talked about what that is in the last post. This is actually good news. First of all, it is good that it is not severe GVH. Secondly, it is good that we found out now and not weeks from now when it undoubtedly would have been worse and he would have been that much more ill. Last week the doctor had said he would wait several more weeks before doing the endoscopy if he continued to be nauseous.....but Dillon had the increase in vomiting this week on Tuesday, which landed him back in the hospital, which spurred an immediate order for the endoscopy. So, as always......everything happens for a reason. We caught this early because of the flare in vomiting that my dad and I recognized as being vastly different from previous. I insisted that I wanted him admitted for further evaluation. There is always a reason....there are no coincidences. Thirdly, they say "a little GVH" is good....it is a great indicator that the new immune system is very strong, beginning to function well, and if there is even 1 stray cancer cell it will get obliterated by the new cells that are in overdrive in his gut. The research shows that patients who get some level of GVH have a better outcome in the long-run.
The mild GVH is treated with 2 forms of steroids. One will be a systemic steroid (right now it will be IV but it will eventually be a pill taken orally). The second one is only oral and it is a sort of pill that only treats the stomach so the amount of steroid actually running through his entire system can be minimized by using this combination. He won't be starting that one until next week some time when his stomach (hopefully) is feeling better and can tolerate the oral meds again. This will hopefully "cure" this level of GVH. There are some that cannot be "cured" and end up being a long-term (even life-long) problem.
The other thing that the pathologists saw on this first set of slides was fairly significant inflammation. We don't know what is causing the inflammation, as the second set of tests and results will not be available until the middle of next week. The suspicion and most likely culprit is some sort of infection in his stomach....but we need to find out what the organism is before it can be effectively treated.
So, the long and the short of it is......there is a reason for this prolonged nausea and vomiting. For me this is good news. It is much easier for me to accept an actual diagnosis and subsequent plan of treatment, than it would be to accept the old.....we are not sure, lets wait and see, or try this and try that and then wait and see. The bad news is that we will probably be in the hospital longer than we had hoped....but with any luck when we do get out again he will be in much better health and will truly enjoy his "freedom" next time around.
Saturday, November 10, 2012
Friday, November 9, 2012
Day 51 ....another bump
Friday, November 9, 2012
Dillon had a period of no nausea yesterday and a small appetite......followed by uncontrollable, persistent,violent wrenching all night long. The way it is coming about now indicates a complication of some sort.....this is not your garden variety post chemo, post radiation, post BMT stomach issue.
He was evaluated by the GI docs this morning after vomiting 5 times in 2 hours this morning and 12 times overnight from midnight until 6. They are going to do a battery of tests including a scan of his pancreas, a barium swallow x-ray, and upper and lower endoscopies with biopsies.
The main suspect is graft versus host disease, which is a common complication in BMT patients, though it presents itself in different parts of the body in different people. GVH is complex, but in a nutshell this form is the new immune system attacking his gut as it perceives it as foreign material.....sorta the opposite of when you hear of organ transplant rejection where the persons body attacks the new organ. They say it is actually good to have "a little" GVH" because the new cells will also attack any stray lymphoma cells, if there are any, and it is a sign of a full takeover by the new cells, which is what we want. The research shows that people who get some degree of GVH actually have a better long term outcome. It is treatable/manageable if caught early, and this would be considered early...so that is good. Treatment is......more meds of course .....just what a sick belly needs, right?
They diagnose GVH of the gut via biopsy. So a tube with a camera will go down Dillon's throat and they will look all around his esophagus, stomach, and upper intestine. They will take tiny little biopsies from a bunch of places all throughout the GI tract. He will be sedated for this procedure.
Another possible diagnosis is an inflamed pancreas, which they are scanning and there is treatment for.
Then another possibility is some sort of anatomical malfunction or deformity.....that his gut just is not working right. The barium swallow x-ray will show that sort of thing.
In the meantime, my boy is completely and utterly miserable and there is not a thing I can do to help make him more comfortable. He can hardly even sleep. That is the worst part for me right now....I am powerless.
Dillon had a period of no nausea yesterday and a small appetite......followed by uncontrollable, persistent,violent wrenching all night long. The way it is coming about now indicates a complication of some sort.....this is not your garden variety post chemo, post radiation, post BMT stomach issue.
He was evaluated by the GI docs this morning after vomiting 5 times in 2 hours this morning and 12 times overnight from midnight until 6. They are going to do a battery of tests including a scan of his pancreas, a barium swallow x-ray, and upper and lower endoscopies with biopsies.
The main suspect is graft versus host disease, which is a common complication in BMT patients, though it presents itself in different parts of the body in different people. GVH is complex, but in a nutshell this form is the new immune system attacking his gut as it perceives it as foreign material.....sorta the opposite of when you hear of organ transplant rejection where the persons body attacks the new organ. They say it is actually good to have "a little" GVH" because the new cells will also attack any stray lymphoma cells, if there are any, and it is a sign of a full takeover by the new cells, which is what we want. The research shows that people who get some degree of GVH actually have a better long term outcome. It is treatable/manageable if caught early, and this would be considered early...so that is good. Treatment is......more meds of course .....just what a sick belly needs, right?
They diagnose GVH of the gut via biopsy. So a tube with a camera will go down Dillon's throat and they will look all around his esophagus, stomach, and upper intestine. They will take tiny little biopsies from a bunch of places all throughout the GI tract. He will be sedated for this procedure.
Another possible diagnosis is an inflamed pancreas, which they are scanning and there is treatment for.
Then another possibility is some sort of anatomical malfunction or deformity.....that his gut just is not working right. The barium swallow x-ray will show that sort of thing.
In the meantime, my boy is completely and utterly miserable and there is not a thing I can do to help make him more comfortable. He can hardly even sleep. That is the worst part for me right now....I am powerless.
Wednesday, November 7, 2012
Day 49....back on the INSIDE
Wednesday, November 7, 2012
Dillon has been readmitted to the hospital.
His nausea and vomiting increased to uncontrollable levels in the past 36 hours. This child worked so incredibly hard to comply with the medication regimen. Through tears and anger and frustration he would gag down pills in between vomiting sessions because that is what is needed and expected. But it just became too much. His vomiting more than doubled in the last day and a half.
So, we are back on the inside. He is sad and disappointed...feels like a step backward...feels like he failed somehow. We all explained to him that he has been the MOST AMAZING patient ever, trying to do everything in the face of such physical ailments. We explained to him that this will let his body rest. He can get his meds through IV for a few days, extra get hydration through IV, get the nausea medications through IV so he does not have to swallow them and then wait an hour for them to take effect.
As with pain, nausea is one of those things that if it gets out of control it can be extremely difficult to get back under control...and that is where we are.
This admission is supportive and precautionary. They do no believe there is anything "serious" behind the continuation of the nausea and vomiting and lack of appetite. They think it is a normal variant that comes with everything that Dillon has been through....but they want to support his system so that it can continue to heal. Of course, there will be multiple tests and procedures to BE SURE that it is not something more serious that needs to be treated.
The big sad eyes on my boy......
The slow, long sighs from my boy....
The stoic face and unwavering focus in my boy.......
"I just want to make it all better Dillon....Mama wishes more than anything that I could take all of this away...ALL OF IT!!! I wish you did not have a care in the world and that you were out on the court with your friends laughing, joking, running, sweating......Soon my love....soon."
Dillon has been readmitted to the hospital.
His nausea and vomiting increased to uncontrollable levels in the past 36 hours. This child worked so incredibly hard to comply with the medication regimen. Through tears and anger and frustration he would gag down pills in between vomiting sessions because that is what is needed and expected. But it just became too much. His vomiting more than doubled in the last day and a half.
So, we are back on the inside. He is sad and disappointed...feels like a step backward...feels like he failed somehow. We all explained to him that he has been the MOST AMAZING patient ever, trying to do everything in the face of such physical ailments. We explained to him that this will let his body rest. He can get his meds through IV for a few days, extra get hydration through IV, get the nausea medications through IV so he does not have to swallow them and then wait an hour for them to take effect.
As with pain, nausea is one of those things that if it gets out of control it can be extremely difficult to get back under control...and that is where we are.
This admission is supportive and precautionary. They do no believe there is anything "serious" behind the continuation of the nausea and vomiting and lack of appetite. They think it is a normal variant that comes with everything that Dillon has been through....but they want to support his system so that it can continue to heal. Of course, there will be multiple tests and procedures to BE SURE that it is not something more serious that needs to be treated.
The big sad eyes on my boy......
The slow, long sighs from my boy....
The stoic face and unwavering focus in my boy.......
"I just want to make it all better Dillon....Mama wishes more than anything that I could take all of this away...ALL OF IT!!! I wish you did not have a care in the world and that you were out on the court with your friends laughing, joking, running, sweating......Soon my love....soon."
Sunday, November 4, 2012
Day 46...sweet slow sunday
Sunday, November 4, 2012
Dillon slept and slept and slept and slept today.....No joke. He did not get up until 2:30 p.m. and that was with some prodding. I did wake him a few times to....you guessed it....take pills and during the pill taking I kept taking his temperature thinking that maybe something was wrong, was he sick? He assured me that he felt fine other than being EXTREMELY tired. So I let him sleep. At 2:30 p.m. I woke him up to go to the bathroom and informed him that we needed to go to the store. We were out of some food items that are vitally important...cream for my coffee and mint tea for him :))) He hummed and hawed and finally got dressed. Off we went, via wheelchair, to Sprouts.
It was his first outing into the community since September 11, 2012, the day he started radiation and got admitted to the hospital. HURRAY DILLON!!! He informed me that he was going to wait in the car and then I informed him that he was doing no such thing. Out the wheelchair came from the back of the Land Cruiser. I hung my 2 grocery bags on the handles on the back and off we went. We bought a watermelon at his request (the other thing he wanted was fresh cherries...sorry buddy, no fresh cherries in Denver in November...I offered frozen and he groaned). We got the tea and the cream and some other stuff. We had quite a lot of people looking at us in the store. Not every day you see a bald boy in a wheelchair wearing a mask, I guess.
Anyway, he agreed that it was not as hard as he expected and he kinda liked being out and about...a little.
We got back to the apartment and we had some tea. Then the basketball game he wanted to see came on. I went about my business of cleaning, reading, talking on the phone, washing dishes, and he watched on the ipad with the occasional interjection...."Mom, you gotta see this..." His enthusiasm makes me so happy...just to hear it in his voice is the best gift of the day.
The rest of the stuff is the same: the pills, the nausea, the eating, etc.
My dad is heading up tomorrow and will be here by dinnertime. Dillon will love to have a basketball watching companion and I will love leaving the apartment and getting some fresh air and "alone time."
Tomorrow, Monday, we will be in the clinic almost all day. He has 6 hours of medication infusions and most likely (my prediction) some red blood cells. These medications are given on a schedule throughout the transplant and post transplant process (about every 3 weeks or so) and tomorrow is the day. We will pack the appropriate entertainment items, foods, beverages, and the ever so trusty pillow (he really hates those tiny little skinny plastic covered pillows at the hospital).
Dillon slept and slept and slept and slept today.....No joke. He did not get up until 2:30 p.m. and that was with some prodding. I did wake him a few times to....you guessed it....take pills and during the pill taking I kept taking his temperature thinking that maybe something was wrong, was he sick? He assured me that he felt fine other than being EXTREMELY tired. So I let him sleep. At 2:30 p.m. I woke him up to go to the bathroom and informed him that we needed to go to the store. We were out of some food items that are vitally important...cream for my coffee and mint tea for him :))) He hummed and hawed and finally got dressed. Off we went, via wheelchair, to Sprouts.
It was his first outing into the community since September 11, 2012, the day he started radiation and got admitted to the hospital. HURRAY DILLON!!! He informed me that he was going to wait in the car and then I informed him that he was doing no such thing. Out the wheelchair came from the back of the Land Cruiser. I hung my 2 grocery bags on the handles on the back and off we went. We bought a watermelon at his request (the other thing he wanted was fresh cherries...sorry buddy, no fresh cherries in Denver in November...I offered frozen and he groaned). We got the tea and the cream and some other stuff. We had quite a lot of people looking at us in the store. Not every day you see a bald boy in a wheelchair wearing a mask, I guess.
Anyway, he agreed that it was not as hard as he expected and he kinda liked being out and about...a little.
We got back to the apartment and we had some tea. Then the basketball game he wanted to see came on. I went about my business of cleaning, reading, talking on the phone, washing dishes, and he watched on the ipad with the occasional interjection...."Mom, you gotta see this..." His enthusiasm makes me so happy...just to hear it in his voice is the best gift of the day.
The rest of the stuff is the same: the pills, the nausea, the eating, etc.
My dad is heading up tomorrow and will be here by dinnertime. Dillon will love to have a basketball watching companion and I will love leaving the apartment and getting some fresh air and "alone time."
Tomorrow, Monday, we will be in the clinic almost all day. He has 6 hours of medication infusions and most likely (my prediction) some red blood cells. These medications are given on a schedule throughout the transplant and post transplant process (about every 3 weeks or so) and tomorrow is the day. We will pack the appropriate entertainment items, foods, beverages, and the ever so trusty pillow (he really hates those tiny little skinny plastic covered pillows at the hospital).
Friday, November 2, 2012
Day 44....fish mobile
Friday, November 2, 2012
Dillon received a very special gift in the mail yesterday. My brother is an artist...and he and his daughter made this amazing mobile for Dillon's room. THANK YOU MIEL AND TODD!!!!! Really a special and thoughtful project you did for Dill Pickle.
Miel also had her whole 1st grade class make cards and send to Dillon, which he loved because they were so cute!! THANK YOU MIEL AND AUNT KERRI!!!
Labs today were still really good. Still no need for blood or platelets.....I am shocked quite frankly. At this point, each time we go in to the clinic I bring books and food and the ipad and lots of stuff because I figure we will be there for hours getting transfusions....and then they come in and say he does not need any and we are free to go. WOW!!!! His platelets are holding steady at 55 and hemoglobin is 9.7. Both are still very low if you were to check what "normal" levels are supposed to be....but for a post transplant kid this is FANTASTIC. If you are wondering why I fell off on giving you the ANC each day...it is because I don't get that information from the clinic by the time we leave each time. The hemoglobin and platelet labs come back quickly but the portion that we need to calculate the ANC takes longer and since he has not had to stay for transfusions we leave before it is available....then by the next appointment I have forgotten that I was going to ask for it...and the cycle begins again. I did calculate one from last week and it was about 1300 so much lower than it was when he was on the bone marrow stimulating drug but his little body is holding its own right now.
Some small victories to share today.....
After the clinic visit I asked Dillon if he wanted to go to Red Box and pick out a couple of movies for the weekend. SURE he says with enthusiasm. I said..."You have to walk to the box with me to help me choose"....and he says...."Obviously mom." The two things of note here are: (1) He agreed to get out of the car and walk across an additional parking lot and (2) He was a bit sassy with the "obviously" which is his regular personality shining through when I made the otherwise "dumb" statement.
Normally Dillon has been sleeping much of each day. Getting up for a couple of hours and then retiring back to his room exhausted and sleeping for 2 or 3 hours. ....well today he got up at 9:30 and at 3:30 I insisted he go nap because he has a basketball game to watch at 6 and he will never make it through to the end without a little snooze.
The food of the day was some lo mein noodles. He had about half a cup and never really complained of nausea although he gave me the big sad puppy dog eyes, so maybe he felt it but just did not mention it out-loud. The doctor basically told him today that if he loses much more weight they will have to readmit him to the hospital.....that should be a motivation for getting more things chewed and swallowed over the weekend. Truth be told, I think they would increase his home TPN before they readmit him to stabilize his weight, but I was happy the doctor used the big scary "back in the hospital" line because I think it will get Dillon focused on the importance and the significance of his consumption.
He continues to be HHV6-negative so the 5 hour IV infusion that we have to do every day will be ending next Wednesday or Thursday if the next test is also negative....YEAH!!!!!!!
Dillon has basketball on the brain. He is on the ipad looking up teams, memorizing stats, plotting his day so he has energy to watch certain games. It is FABULOUS to have him interested in something and showing motivation....he has gone weeks without really wanting to do much of anything at all.....a definite improvement.
Dillon received a very special gift in the mail yesterday. My brother is an artist...and he and his daughter made this amazing mobile for Dillon's room. THANK YOU MIEL AND TODD!!!!! Really a special and thoughtful project you did for Dill Pickle.
Miel also had her whole 1st grade class make cards and send to Dillon, which he loved because they were so cute!! THANK YOU MIEL AND AUNT KERRI!!!
Labs today were still really good. Still no need for blood or platelets.....I am shocked quite frankly. At this point, each time we go in to the clinic I bring books and food and the ipad and lots of stuff because I figure we will be there for hours getting transfusions....and then they come in and say he does not need any and we are free to go. WOW!!!! His platelets are holding steady at 55 and hemoglobin is 9.7. Both are still very low if you were to check what "normal" levels are supposed to be....but for a post transplant kid this is FANTASTIC. If you are wondering why I fell off on giving you the ANC each day...it is because I don't get that information from the clinic by the time we leave each time. The hemoglobin and platelet labs come back quickly but the portion that we need to calculate the ANC takes longer and since he has not had to stay for transfusions we leave before it is available....then by the next appointment I have forgotten that I was going to ask for it...and the cycle begins again. I did calculate one from last week and it was about 1300 so much lower than it was when he was on the bone marrow stimulating drug but his little body is holding its own right now.
Some small victories to share today.....
After the clinic visit I asked Dillon if he wanted to go to Red Box and pick out a couple of movies for the weekend. SURE he says with enthusiasm. I said..."You have to walk to the box with me to help me choose"....and he says...."Obviously mom." The two things of note here are: (1) He agreed to get out of the car and walk across an additional parking lot and (2) He was a bit sassy with the "obviously" which is his regular personality shining through when I made the otherwise "dumb" statement.
Normally Dillon has been sleeping much of each day. Getting up for a couple of hours and then retiring back to his room exhausted and sleeping for 2 or 3 hours. ....well today he got up at 9:30 and at 3:30 I insisted he go nap because he has a basketball game to watch at 6 and he will never make it through to the end without a little snooze.
The food of the day was some lo mein noodles. He had about half a cup and never really complained of nausea although he gave me the big sad puppy dog eyes, so maybe he felt it but just did not mention it out-loud. The doctor basically told him today that if he loses much more weight they will have to readmit him to the hospital.....that should be a motivation for getting more things chewed and swallowed over the weekend. Truth be told, I think they would increase his home TPN before they readmit him to stabilize his weight, but I was happy the doctor used the big scary "back in the hospital" line because I think it will get Dillon focused on the importance and the significance of his consumption.
He continues to be HHV6-negative so the 5 hour IV infusion that we have to do every day will be ending next Wednesday or Thursday if the next test is also negative....YEAH!!!!!!!
Dillon has basketball on the brain. He is on the ipad looking up teams, memorizing stats, plotting his day so he has energy to watch certain games. It is FABULOUS to have him interested in something and showing motivation....he has gone weeks without really wanting to do much of anything at all.....a definite improvement.
Thursday, November 1, 2012
Oh yeah....a little something for Shari
Thursday, November 1, 2012
I have gotten several inquiries over the past few weeks in this vein....."What can we do to help YOU Shari." I have thought about that and now that we are out of the hospital I have an answer. The Santa Fe Buckleys are getting taken care of nutritionally by many friends. It would be LOVELY to have that same support on my end....but how do we make that happen?? I have thought about it and after a recent visit to the AMAZING Whole Foods on this side of Denver, I realized that if people wanted to send me gift cards to Whole Foods I could go there and make selections every few days of their staggering array of prepared foods and it would be almost like I am getting home-cooked meals from friends. This Whole Foods has an entire food court type section with about 10 different little stations to choose from.
So....if you have been asking me or wondering what you could do on your end to help me on my end...there you have it. Cooking and grocery shopping just are not on the priority list, so I end up eating frozen dinners or weird things like a whole cucumber and a cup of noodles for dinner :)) What a blessing healthy, fresh food will be for me :)
My mailing address is:
Brent's Place
c/o. Shari Buckley
11980 East 16th Ave
Aurora, CO 80010
My utmost gratitude in advance for the love and care-taking that is being sent my way!!!
I have gotten several inquiries over the past few weeks in this vein....."What can we do to help YOU Shari." I have thought about that and now that we are out of the hospital I have an answer. The Santa Fe Buckleys are getting taken care of nutritionally by many friends. It would be LOVELY to have that same support on my end....but how do we make that happen?? I have thought about it and after a recent visit to the AMAZING Whole Foods on this side of Denver, I realized that if people wanted to send me gift cards to Whole Foods I could go there and make selections every few days of their staggering array of prepared foods and it would be almost like I am getting home-cooked meals from friends. This Whole Foods has an entire food court type section with about 10 different little stations to choose from.
So....if you have been asking me or wondering what you could do on your end to help me on my end...there you have it. Cooking and grocery shopping just are not on the priority list, so I end up eating frozen dinners or weird things like a whole cucumber and a cup of noodles for dinner :)) What a blessing healthy, fresh food will be for me :)
My mailing address is:
Brent's Place
c/o. Shari Buckley
11980 East 16th Ave
Aurora, CO 80010
My utmost gratitude in advance for the love and care-taking that is being sent my way!!!
Day 43....let the eating begin
Thursday, November 1, 2012
Today, November 1, I am going hardball with Dillon's eating. Each day I am going to "force" him to eat a few bites of real food several times. They say if you don't use your stomach "muscles" then they forget what to do and they just sit still instead of churn around when food goes in...he is close to that point. So this morning it was cream of wheat with a tiny bit of milk, butter, and brown sugar. He ate it about 30 minutes ago...has been breathing through the nausea that hit as soon as he swallowed...do we have success on the first "FORCED" feeding....I don't know. I just think if he would get started it would snowball and his stomach would get "stronger" and then he would be more willing and able to eat. They started him on an appetite stimulant. I am wishing we had easy access to medical marijuana to combat the nausea and the lack of appetite....won't that be more natural and better for him than the 4 anti-nausea meds and now the synthetic appetite stimulant??? Apparently the process of obtaining medical marijuana is arduous and takes up to 60 days, aside from the fact that much marijuana is coated in mold spots that could sprout in Dillon's body and kill him....darn it!!!
I told you about the costume contest at the hospital that Dillon insisted on staying for on Halloween. Here are some photos of that. It was staff groups from the hospital. It was so fun. There were literally hundreds of people gathered in the lobby of the hospital. The middle of the hospital is open from the first to the fourth floor with glass walls all the way around....so you can stand on the first floor and look up to the 4th floor and all you see is glass and walkways. Well each of the floors was FULL to capacity with people looking down through the glass to the first floor where the party was happening. There was an amazing energy and fun spirit pulsing through the crowd. I was nervous for Dillon because we were way up front. He was in a wheelchair and I thought to myself...."if this kid decides suddenly that he needs to get out of here because he is overwhelmed or feeling sick we are in BIG trouble". There was wall to wall people for as far as I could see and there was no path or opening to escape.
Well....I have been writing this for a while and Dillon is now asleep....the cream of wheat is still IN!!!! YAHHOO
Sean and Luca left this morning. They got picked up by a shuttle here at the apartment at 7 a.m. (Sean wanted to be super early just in case there were backups at the airport because of the closures happening on the East coast). It is quiet and calm now. We LOVE LOVE LOVE having our boys here but calm and quiet is not something that happens easily when they are here. It was lovely to be a family again all in the same place, sharing meals, doing dishes, watching movies. We even got to see the classic Charlie Brown Halloween...all crammed on our tiny couch eating candy and popcorn!!!
Dillon's checkup yesterday was GREAT!!!! He has not needed platelets since last friday the 26th (in the hospital he got them every other day, sometimes every day, and once in a while twice a day). He also has not had red blood cells since he left the hospital. That is HUGE!!!!! It means that his body is doing 2 things: One.... it is "holding onto" the transfusions that he has received and Two.....his body is beginning to function and produce some of its own platelets and red blood cells. Although they are immature and not fully functional they are beginning to grow, which means the bone marrow is really settling in and getting to work. Tomorrow he has another lab check to see if he needs any transfusions. Monday is a long appointment day because he is getting two IV medications that are administered intermittently throughout the post transplant period...and monday is the day. So we will be in clinic for several hours. He gets a private, glass enclosed room with a bed and a rocking chair for these infusions so we are both "fairly" comfortable. I am able to leave and grab food if I need to. There is TV and XBOX 360 in the room as well. Dillon's preference is to sleep through the whole thing if at all possible :)) Those video games have no hold over this boy when it comes to getting his beauty rest...hahaha.
Today, November 1, I am going hardball with Dillon's eating. Each day I am going to "force" him to eat a few bites of real food several times. They say if you don't use your stomach "muscles" then they forget what to do and they just sit still instead of churn around when food goes in...he is close to that point. So this morning it was cream of wheat with a tiny bit of milk, butter, and brown sugar. He ate it about 30 minutes ago...has been breathing through the nausea that hit as soon as he swallowed...do we have success on the first "FORCED" feeding....I don't know. I just think if he would get started it would snowball and his stomach would get "stronger" and then he would be more willing and able to eat. They started him on an appetite stimulant. I am wishing we had easy access to medical marijuana to combat the nausea and the lack of appetite....won't that be more natural and better for him than the 4 anti-nausea meds and now the synthetic appetite stimulant??? Apparently the process of obtaining medical marijuana is arduous and takes up to 60 days, aside from the fact that much marijuana is coated in mold spots that could sprout in Dillon's body and kill him....darn it!!!
I told you about the costume contest at the hospital that Dillon insisted on staying for on Halloween. Here are some photos of that. It was staff groups from the hospital. It was so fun. There were literally hundreds of people gathered in the lobby of the hospital. The middle of the hospital is open from the first to the fourth floor with glass walls all the way around....so you can stand on the first floor and look up to the 4th floor and all you see is glass and walkways. Well each of the floors was FULL to capacity with people looking down through the glass to the first floor where the party was happening. There was an amazing energy and fun spirit pulsing through the crowd. I was nervous for Dillon because we were way up front. He was in a wheelchair and I thought to myself...."if this kid decides suddenly that he needs to get out of here because he is overwhelmed or feeling sick we are in BIG trouble". There was wall to wall people for as far as I could see and there was no path or opening to escape.
 | |
| wall to wall people watching the costume contest |
 |
| Scooby Doo and the gang |
 |
| Ms. Pacman and ghosts |
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| Alice in Wonderland |
 |
| Thing One and Thing Two |
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| Ghost Busters |
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| Cars |
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| Very Hungry Caterpillar |
 | |
| The hospital "mascot" or logo |
Well....I have been writing this for a while and Dillon is now asleep....the cream of wheat is still IN!!!! YAHHOO
Sean and Luca left this morning. They got picked up by a shuttle here at the apartment at 7 a.m. (Sean wanted to be super early just in case there were backups at the airport because of the closures happening on the East coast). It is quiet and calm now. We LOVE LOVE LOVE having our boys here but calm and quiet is not something that happens easily when they are here. It was lovely to be a family again all in the same place, sharing meals, doing dishes, watching movies. We even got to see the classic Charlie Brown Halloween...all crammed on our tiny couch eating candy and popcorn!!!
Dillon's checkup yesterday was GREAT!!!! He has not needed platelets since last friday the 26th (in the hospital he got them every other day, sometimes every day, and once in a while twice a day). He also has not had red blood cells since he left the hospital. That is HUGE!!!!! It means that his body is doing 2 things: One.... it is "holding onto" the transfusions that he has received and Two.....his body is beginning to function and produce some of its own platelets and red blood cells. Although they are immature and not fully functional they are beginning to grow, which means the bone marrow is really settling in and getting to work. Tomorrow he has another lab check to see if he needs any transfusions. Monday is a long appointment day because he is getting two IV medications that are administered intermittently throughout the post transplant period...and monday is the day. So we will be in clinic for several hours. He gets a private, glass enclosed room with a bed and a rocking chair for these infusions so we are both "fairly" comfortable. I am able to leave and grab food if I need to. There is TV and XBOX 360 in the room as well. Dillon's preference is to sleep through the whole thing if at all possible :)) Those video games have no hold over this boy when it comes to getting his beauty rest...hahaha.
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