Tuesday, March 26, 2013
Dillon had a followup visit at UNM last Friday. All of his blood work remains stable and the numbers continue to rise, indicating that his immune system is slowly becoming more functional. My main concern since leaving Denver continues to be the belly and the weight loss. Dillon's weight has slowly decreased by about 4 pounds since we left Denver, which is in direct correlation to a decline in appetite and ability to eat a quantity of food. The docs in Albuquerque were not acutely worried (yet) that it is the GVH returning. They feel it is more of an adjustment issue both for his body (increased activity levels) and his brain (the brain being the place where the "I'm hungry" chemicals are made) and as he comes off of more meds. So, this weeks "solution" is to start an appetite stimulant. He has been on it now for 4 days and it does indeed seem to be helping. He is a bit more hungry and he is not getting full as fast when he does eat. Also, the nausea seems to have calmed down a bit the past few days as well. If things don't improve significantly by the time we return to Denver on April 8, the docs up there will decide if we need to do another scope and biopsy to make sure it is not GVH. I convinced the docs at UNM that we don't need to come every week for blood work......so we get to skip 2 weeks before we head back up to Denver...a welcome break for my boy (who, by the way, did beautifully on his last needle poke. With Luca by his side and me helping him with guided imagery about his dream trip to snorkel in the ocean, he did not even get teary eyed and his breathing and anxiety level remained under control).
The ingrown toenail and the cold are slowly resolving without any major issues.
Dillon and I continue our studies of 6th grade math, grammar, writing, reading, and music, all sprinkled with lots of distractions, fun physical activities (today we are going swimming after we pick Luca up from school), and some limited socialization with friends. Things are so busy for everyone and Dillon is still a bit apprehensive about spending time with friends, so that has not been happening as much as I thought it might at this point. Big D has been out on the court at our house quite a bit. He is regaining strength, endurance, and agility. When I asked him last night if he felt like his body was back yet he laughed and said "NO WAY....but it is much better than it was." He is looking into the future to trying out for the boys middle school basketball team next year.
I continue to have ups and downs. I was reading some support information for caregivers that said a lot of people in my position have symptoms similar to PTSD.....the anxiety, the exhaustion, the worry, the fear, the inability to function at times. I am slowly recovering with the strong love of my sweet Sean and the boys, as well as my parents ever present love and support. Friends are coming to my rescue and keeping me occupied with lunches, occasional phone calls, and helping me readjust to being more than a caregiver. The path I am on is more challenging than I could have ever anticipated. I am trying to be patient and gentle with myself....not something that I come by naturally.
Tuesday, March 26, 2013
Wednesday, March 20, 2013
6 months.....the road is still rocky
Wednesday, March 20, 2013
I am not counting days post BMT anymore....I have transitioned to counting months. Yesterday Dillon passed the 6-month mark post transplant. He is doing amazing in so many ways, and then there are these underlying, seemingly small but could turn into huge, issues that continue to plague our day-to-day lives. First and foremost, Dillon's energy and enthusiasm for life have returned. He is happy, he laughs, he jokes, he teases his brother, he talks back to his parents, he refuses to do his homework. I am in awe and amazement that his personality is fully intact and progressing with maturity as he approaches his 12th birthday in a couple of months.
The eating issues continue. He has had a steady decline in his appetite since we got home. He is now struggling to eat enough to maintain his weight and has in fact lost about 3 pounds in the past 2 weeks. Our underlying fear is that it is the gut GVH returning. I spoke with a nurse today that said it is common for the GVH to wax and wane. My concern is if it is back and we don't treat it aggressively and promptly that it will get worse over time and then become harder to treat. GVH of the various organ systems is one of the main mortality factors in BMT...so I am on pins and needles. I am trying not to obsess and freak the poor kid out...but seriously...I am worried. Don't us moms always worry when our kids aren't growing?? We go to UNM on Friday and back to Denver in about 3 weeks. Hopefully by then we will have a plan to either do another scope and biopsy of his gut...or better yet maybe by then things will have turned around. Mr. Pickle has a little bit of a cold that the doctors are watching closely. Apparently minor illnesses like colds can become raging and cause sepsis, which is infection of the blood, which can be very hard to treat. I don't really understand how that happens since his immune system is still not functioning fully, but for me it is more breath holding. Every morning I wait for Big D to emerge from his room so I can take his temperature and assess his symptoms. Another physical issue that is causing quite a bit of discomfort is a severely ingrown toenail. Remember that all of his nails fell off...well they fell off when the new nails were still only about halfway up the nail bed, so now that the new nails are beginning to grow more without the old nail on top they are becoming ingrown and seemingly infected. He was started on antibiotics yesterday, is doing Epsom salt soaks, and using triple antibiotic ointment...but like the cold this small infection can turn into something that requires hospitalization.
I am feeling a bit overwhelmed with worry. My brain tries to just deal with what is in front of me, which is a boy who needs constant care and attention, constant feeding and monitoring, and he is not always happy about all that extra attention :)) I am trying not to let my brain go to the scary "what if" place...the place where all of the worst case scenarios are played out. We don't want to prepare for the worst....but we have to be vigilant with noting all of these details and changes in preparation for what could suddenly be upon us.
We carry on day in and day out. Dillon is doing more school work and is more physically active (barring the pain in the toe). Last weekend Dillon and Luca's cousin came to visit from Dallas and they got to go swimming in the hotel pool. We went sledding on Sunday and he was SOOOOO crazy happy. He missed out on most of the activities of last summer and fall and he informed us that there was no way he was going to miss out on the entire winter too....so we headed up to the hill for some good old fashioned family fun.
I am not counting days post BMT anymore....I have transitioned to counting months. Yesterday Dillon passed the 6-month mark post transplant. He is doing amazing in so many ways, and then there are these underlying, seemingly small but could turn into huge, issues that continue to plague our day-to-day lives. First and foremost, Dillon's energy and enthusiasm for life have returned. He is happy, he laughs, he jokes, he teases his brother, he talks back to his parents, he refuses to do his homework. I am in awe and amazement that his personality is fully intact and progressing with maturity as he approaches his 12th birthday in a couple of months.
The eating issues continue. He has had a steady decline in his appetite since we got home. He is now struggling to eat enough to maintain his weight and has in fact lost about 3 pounds in the past 2 weeks. Our underlying fear is that it is the gut GVH returning. I spoke with a nurse today that said it is common for the GVH to wax and wane. My concern is if it is back and we don't treat it aggressively and promptly that it will get worse over time and then become harder to treat. GVH of the various organ systems is one of the main mortality factors in BMT...so I am on pins and needles. I am trying not to obsess and freak the poor kid out...but seriously...I am worried. Don't us moms always worry when our kids aren't growing?? We go to UNM on Friday and back to Denver in about 3 weeks. Hopefully by then we will have a plan to either do another scope and biopsy of his gut...or better yet maybe by then things will have turned around. Mr. Pickle has a little bit of a cold that the doctors are watching closely. Apparently minor illnesses like colds can become raging and cause sepsis, which is infection of the blood, which can be very hard to treat. I don't really understand how that happens since his immune system is still not functioning fully, but for me it is more breath holding. Every morning I wait for Big D to emerge from his room so I can take his temperature and assess his symptoms. Another physical issue that is causing quite a bit of discomfort is a severely ingrown toenail. Remember that all of his nails fell off...well they fell off when the new nails were still only about halfway up the nail bed, so now that the new nails are beginning to grow more without the old nail on top they are becoming ingrown and seemingly infected. He was started on antibiotics yesterday, is doing Epsom salt soaks, and using triple antibiotic ointment...but like the cold this small infection can turn into something that requires hospitalization.
I am feeling a bit overwhelmed with worry. My brain tries to just deal with what is in front of me, which is a boy who needs constant care and attention, constant feeding and monitoring, and he is not always happy about all that extra attention :)) I am trying not to let my brain go to the scary "what if" place...the place where all of the worst case scenarios are played out. We don't want to prepare for the worst....but we have to be vigilant with noting all of these details and changes in preparation for what could suddenly be upon us.
We carry on day in and day out. Dillon is doing more school work and is more physically active (barring the pain in the toe). Last weekend Dillon and Luca's cousin came to visit from Dallas and they got to go swimming in the hotel pool. We went sledding on Sunday and he was SOOOOO crazy happy. He missed out on most of the activities of last summer and fall and he informed us that there was no way he was going to miss out on the entire winter too....so we headed up to the hill for some good old fashioned family fun.
Thursday, March 14, 2013
Day 176.....three week whirlwind
Thursday, March 14, 2013
We have been home for 3 weeks now. We have been super busy and trying to ease back into family life. On top of the extreme cleaning routine, we had a lot of adjusting to do. Sean was able to work more, which he needed to do after many lost hours at work taking care of Luca, running the house, and traveling to Denver. Dillon and I had to get used to just being in a space with more people, more activity, more demands, more noise, more distractions. Luca had to get used to having Dillon and I back in his daily sphere. He was very clingy for a few days. In fact he slept in Dillon's room on the floor for the first week. I had to get used to feeding an entire family all the meals of the day, every day, day after day (hahahaha.....I was spoiled at Brent's with not having to worry or focus so much on preparing food). The laundry and cleaning, as well as Dillon's homeschooling and Luca's school schedule keep me pretty busy. I underestimated how intense the transition would be....but we are all doing well and I think we have adjusted back into "normal life".....except for.....
Dillon has been to UNM 3 times in 2 weeks for blood tests and exams to watch those lymph nodes that showed up on his last PET when we were leaving Denver.
We actually just got back from Denver last night. We drove up on Sunday, had appointments all day long Monday and Tuesday, and drove home on Wednesday. All four of us were able to go. Brent's Place has basic rooms for this purpose (small rooms with 2 twin beds and a bathroom). We were able to use the kitchen downstairs for food storage and prep...and we also enjoyed a couple of nice meals out. Monday night was community night so a meal was served and we got to hang out with our friends that we left behind. It was really enjoyable and less stressful than I had anticipated. Dillon and Luca schemed on the whole drive up....their plan was that they would be in one of the rooms and the parents would be in the other. Sean and I got a kick out of the boys trying to convince us that they could handle the responsibility of behaving (i.e. no jumping on the bed, no watching TV all night, no yelling, etc). Of course......because we are the most awesome parents ever (hehehe).....we let them have this wish. They handled themselves beautifully and Dillon was even a little ill one night and Luca handled it and then came and got me. My theory....maybe they will remember the time mom and Dad let them have their own "hotel room" and they will remember the reasons why we were there less. Again, my quest for building memories that will overpower the scary, negative stuff that is still a necessity in Dillon's journeys.
Sooooo.......test results.....
PET scan was done again to recheck those pesky nodes that showed up on his last one a month ago (when we were leaving Denver). It came back with a slight positive reaction but the docs all chalk this up to the little cold that Dillon is currently battling. He is not very ill (a little cough and a slightly stuffy nose). So basically the docs told us we can relax, that this is very very reassuring, that they don't really believe these are lymphoma in any way. So for now....we breathe easy regarding this being a recurrence of the cancer. We will re-scan in 3 months for another comparison and we will be going to UNM every other week for an exam just so the doc there can feel and make sure there is no increase in size in the meantime.
Dillon's bone density test has returned, as well as vitamin D levels. His vitamin D is now within normal limits so we will continue that supplement for a few more months to be sure his bones are getting what they need. His spine is completely normal as far as the density goes. There was a question of a compression fracture but they have ruled this out because his bones look strong in that area. His hip bone, however, showed a little lower density, so he continues on the vitamin D and increased calcium intake but nothing more aggressive than that is needed!! Part of the bone density workup was also evaluating his growth. He did in fact stop growing last spring, just about the time he was diagnosed. With the cancer and the steroids and the radiation and the chemo a halt in growth is not unusual. They expect it will pick back up in the next 3 to 6 months.....crossing our fingers.
Dillon's lungs checked out as healthy and functioning well, as did his teeth.
Two more meds were discontinued so that is 4 less pills per day. I don't have a pill count at the moment but I think it is down to about 18 or 20.
Dillon's weight was stable. He is eating well, a more balanced diet than before, and he is much more physically active, so hopefully we will see him continue to gain a few pounds in the form of muscle mass in his legs and arms.
The belly has been pretty good. He is eating a larger variety of foods, especially spicier foods, and at times his stomach protests. He has had a few bouts of nausea and vomiting over the past 3 weeks but nothing that is concerning for a recurrence of the GVH.
We return to UNM every other week and we return to Denver monthly with the next visit being April 7-9.
Spring is in the air and we are all enjoying some fresh air and sunshine...hope you are too!!!!
We have been home for 3 weeks now. We have been super busy and trying to ease back into family life. On top of the extreme cleaning routine, we had a lot of adjusting to do. Sean was able to work more, which he needed to do after many lost hours at work taking care of Luca, running the house, and traveling to Denver. Dillon and I had to get used to just being in a space with more people, more activity, more demands, more noise, more distractions. Luca had to get used to having Dillon and I back in his daily sphere. He was very clingy for a few days. In fact he slept in Dillon's room on the floor for the first week. I had to get used to feeding an entire family all the meals of the day, every day, day after day (hahahaha.....I was spoiled at Brent's with not having to worry or focus so much on preparing food). The laundry and cleaning, as well as Dillon's homeschooling and Luca's school schedule keep me pretty busy. I underestimated how intense the transition would be....but we are all doing well and I think we have adjusted back into "normal life".....except for.....
Dillon has been to UNM 3 times in 2 weeks for blood tests and exams to watch those lymph nodes that showed up on his last PET when we were leaving Denver.
We actually just got back from Denver last night. We drove up on Sunday, had appointments all day long Monday and Tuesday, and drove home on Wednesday. All four of us were able to go. Brent's Place has basic rooms for this purpose (small rooms with 2 twin beds and a bathroom). We were able to use the kitchen downstairs for food storage and prep...and we also enjoyed a couple of nice meals out. Monday night was community night so a meal was served and we got to hang out with our friends that we left behind. It was really enjoyable and less stressful than I had anticipated. Dillon and Luca schemed on the whole drive up....their plan was that they would be in one of the rooms and the parents would be in the other. Sean and I got a kick out of the boys trying to convince us that they could handle the responsibility of behaving (i.e. no jumping on the bed, no watching TV all night, no yelling, etc). Of course......because we are the most awesome parents ever (hehehe).....we let them have this wish. They handled themselves beautifully and Dillon was even a little ill one night and Luca handled it and then came and got me. My theory....maybe they will remember the time mom and Dad let them have their own "hotel room" and they will remember the reasons why we were there less. Again, my quest for building memories that will overpower the scary, negative stuff that is still a necessity in Dillon's journeys.
Sooooo.......test results.....
PET scan was done again to recheck those pesky nodes that showed up on his last one a month ago (when we were leaving Denver). It came back with a slight positive reaction but the docs all chalk this up to the little cold that Dillon is currently battling. He is not very ill (a little cough and a slightly stuffy nose). So basically the docs told us we can relax, that this is very very reassuring, that they don't really believe these are lymphoma in any way. So for now....we breathe easy regarding this being a recurrence of the cancer. We will re-scan in 3 months for another comparison and we will be going to UNM every other week for an exam just so the doc there can feel and make sure there is no increase in size in the meantime.
Dillon's bone density test has returned, as well as vitamin D levels. His vitamin D is now within normal limits so we will continue that supplement for a few more months to be sure his bones are getting what they need. His spine is completely normal as far as the density goes. There was a question of a compression fracture but they have ruled this out because his bones look strong in that area. His hip bone, however, showed a little lower density, so he continues on the vitamin D and increased calcium intake but nothing more aggressive than that is needed!! Part of the bone density workup was also evaluating his growth. He did in fact stop growing last spring, just about the time he was diagnosed. With the cancer and the steroids and the radiation and the chemo a halt in growth is not unusual. They expect it will pick back up in the next 3 to 6 months.....crossing our fingers.
Dillon's lungs checked out as healthy and functioning well, as did his teeth.
Two more meds were discontinued so that is 4 less pills per day. I don't have a pill count at the moment but I think it is down to about 18 or 20.
Dillon's weight was stable. He is eating well, a more balanced diet than before, and he is much more physically active, so hopefully we will see him continue to gain a few pounds in the form of muscle mass in his legs and arms.
The belly has been pretty good. He is eating a larger variety of foods, especially spicier foods, and at times his stomach protests. He has had a few bouts of nausea and vomiting over the past 3 weeks but nothing that is concerning for a recurrence of the GVH.
We return to UNM every other week and we return to Denver monthly with the next visit being April 7-9.
Spring is in the air and we are all enjoying some fresh air and sunshine...hope you are too!!!!
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