Duct cleaning - check
Flu shots - check (except Tim and Sophia - they're still on the list)
Car detailing - scheduled for tomorrow (time to clean up the Cheeriomobile)
Oil change - check
Window sills - check
Garbage disposal installed - check (well almost - the installer couldn't wire it, so that's yet to be done)
Kaia's new glasses - check
My glasses - check
My annual exam - check (drove all the way to Malone and back today; probably time to consider getting a doctor closer to home.....)
Eviction notice to problem tenant - check
Arrange to have parent teacher conferences by phone - check
My list is getting shorter and so is the time to transplant.
Meghan's preliminary labs, counseling, exam and consent forms are scheduled for Monday morning. She flies into Boston on Saturday and we're all going over to spend the weekend together and enjoy the city a little bit. We'll familiarize Sophia with the metro system so she can park at a park-n-ride outside the city and take the metro to the hospital or Hope Lodge to see Ryan. Meghan will fly out Monday after her appoinments to minimize her time away from work.
Ryan's final pre-admission testing and counseling and consents will be on Tuesday, so he and I will stay over until Tuesday. He had spinal taps and intrathecal chemo the past 2 Mondays and (.....need to be careful not to jinx him here.....) he made it through with minimal headaches this time. He's also had his EKG, cardiac Echo, chest X-ray and enough tubes of blood to make me wonder if he'll need a transfusion! His labs are still wonderful and he's feeling pretty good.
While I'm working on my checklist, Ryan's working on his pre-transplant bucket list: movies, meals out with Sophia, visiting people with the missionaries, eating things he won't be able to eat after the transplant.
Sophia and I dumped the girls at TaeKwonDo yesterday and sneaked away to have pedicures. I always wonder what the staff is saying when they speak Chinese and laugh. Guess I'm going to need to work harder on my Chinese! Or maybe I don't want to know.......
Sophia's feet are really ticklish, and she was trying hard to hold still but turning red and giggling. Pretty soon everybody in the shop was laughing along since she was so funny!
MeiLin had a virus this week with a sore throat and fever - crawled in our bed Monday morning at 4:30 coughing like crazy. She always gets bronchospasm ('reactive airway disease" - like asthma) whenever she gets a virus. I started the nebulizer treatment, and laid in bed trying to figure out how I was going to get Ryan to Boston and get MeiLin taken care of since she needed to stay home from school. MeiLin can do the nebulizer treatments herself, but I felt bad leaving her home alone.
Tim can do a lot of his work from home via the computer, so he took a "snow day" - working from home as he has done a few times when he's been snowed in. He always feels a little guilty when he doesn't go in to work. Interestingly, there was a problem with his building filling with smoke and having to be evacuated, then everyone was sent home for the day. So it sounds like he worked more than anyone at the office!!
I was fearful all week that MeiLin would infect Ryan - we banned her from setting the table, emptying the dishwasher, using the hall bathroom, using the main computer that Ryan uses. I even took her to the pediatrician to have a strep test. I warned them that I'd probably be a bit neurotic this year, pulling the trigger much more quickly than I normally would if the girls are a little sick. They were very supportive.
Then there was Kaia's annual check-up. She had a captive audience with the PA, and as she put on her one-woman comedy act I was a little worried that they'd call in child protective services, with answers suggesting that she only eats Ramen noodles and Nutella, she doesn't wear any protective gear when she roller blades (she doesn't even have a pair!), mom doesn't care about seat belts, we beat her if she gets in trouble, etc. Thankfully, MeiLin was also in the audience and was falling off her chair laughing, interspersed with patient reassurances to the PA that Kaia was just pulling her chain.
Sixteen days and counting to admission. Still need to finish the Halloween costumes, rug cleaning, de-cluttering (the bane of my existance). Need to fix the broken visor in my car, get it detailed. Prepare a few freezer meals for Tim and the girls. Make arrangements for rides to Chinese classes in Saratoga Springs. And a few other miscellaneous things. All in all, I think things are coming together and we're just about set.
We're getting boarded up for the other wall of that hurricane. Although I know this will probably be tougher on Ryan than the chemo has been, I feel confident that he will come through it well. But it's going to be hard to watch him lose weight, have more radiation and medication side-effects, and be so very limited in what he can do. I thankful for technology that will allow him to keep in touch with friends and help to ease the boredom and isolation.
Please continue to keep Ryan in your prayers - this won't be easy.
Thanks!!
---Barb
Wednesday, September 26, 2012
Saturday, September 15, 2012
September 15 - the eye of the storm
We're in the "lull" - the eye of the hurricane so to speak. We've made it through the first wall, now it's relatively quiet, but we're gearing up for the next barrage.
On September 4th, Ryan had his bone marrow biopsy at the conclusion of the second cycle of the CD22 antibody chemo. On Friday, September 7th, we saw Dr. Cutler - the transplant specialist. He told us that the marrow at the completion of Cycle one showed not only cellular remission, but also biochemical remission - meaning that all the specialized stains that can tell normal lymphocytes from cancerous ones failed to detect any cancer cells! Although the results of the marrow biopsy from 3 days earlier were not complete, he anticipated that it would confirm remission as well.
He discussed the potential liver damage from the chemo, and although Ryan's liver function has been normal throughout, there have been some cases of hepatic vascular occlusive disease after transplant in patients treated with this chemo. It appears that the combination of this particular chemo and one of the medications used to prevent graft versus host disease ("GVH" disease - where the "new" marrow from the donor recognizes the recipient's body as being "foreign" and attacks it) results in a higher incidence of this severe liver condition. The GVH drug is used frequently at Dana Farber in addition to the standard protocols for GVH. So in patients like Ryan, they avoid the use of that particular GVH drug.
We also met with the housing coordinator from the transplant service, and filled out an application to stay at the Hope House - sponsored by a pharmaceutical company, it is specially designed for patients immediately post transplant, with suites for the patient and a caretaker, who is required to be with the patient at all times. Each patients has a suite and their own refrigerator, etc. There is no cost to stay at the facility!!
At that point the transplant was planned for November, and Ryan was scheduled to start the third cycle of the chemo starting on the 10th.
On the drive to Boston on the 10th, I got the strong impression that I was uncomfortable with Ryan having the additional chemo, fearing that it might further increase the risk of hepatic vascular occlusive disease and wondering - since he was already in remission - what benefit we gained. Yet I was so thankful that the clinical trial drug had saved Ryan's life, that I didn't want to be unreasonable demanding removal from the protocol or offending those who had saved his life. I asked Ryan if it was OK if I asked Dr. Steensma about the pros and cons. Ryan voiced the same concerns. So we went into the appointment with a list of questions - somewhat apprehensive to be questioning the additional chemo, yet feeling that we shouldn't do it.........
Dr. Steensma came into the room and immediately told us that he and Dr. Cutler had been discussing Ryan's care, and that they would prefer to fore go the third cycle of chemo and move the transplant up to October. Within half an hour we were back on the schedule for October. I immediately called Meghan to let her know, assuming that she had rearranged her work schedule and her life based on the November dates. And, of course, she had. Then we called the housing coordinator to let her know there was a change in the dates we would need to be there.
Ryan had the first of two intrathecal chemo injections (chemo in the spinal fluid via spinal tap), and we left for home hours earlier that we had planned since the clinical trial chemo was not done.
Since then we've been working out the logistics of getting Ryan back for his pre-transplant tests earlier than planned because of a Catch 22 with the insurance. He can't be officially approved for the stem cell transplant until his testing is complete. This means that his donor - Meghan - can't be seen at Boston for her physical exam and testing. If we wait until Ryan's October 2nd appointment, the insurance approval may not come until days before the transplant, necessitating Meghan be here a lot longer that she had planned.
Of course, we didn't discover this problem until Friday afternoon. We left messages for the transplant coordinator, expecting they would deal with it on Monday. They called today and have moved Ryan's appointment to this coming Monday. That are so fantastic at working with us and accommodating our needs and requests.
Meghan's job is as an advertising account executive - and she is in charge of the LDS Church's social media, including mormon.org. Because of Mitt Romney's candidacy, there has been a huge upsurge in interest in the church, so her job has been in really high gear, and will continue to be until after the election (or maybe even longer if he's elected). So she is trying to make a quick trip here on a Friday or Monday for the initial physical, catching a red-eye to minimize the time away from work. And she'll be planning to do a lot of work while she's here for the donation.
At home we're preparing in a number of ways - got a second fridge/freezer to put in the garage so we can separate things for Ryan from things like onions that my have mold of microbes, and we can freeze and store single servings of food for lunches, etc. After the transplant he will have significant restrictions for a while to prevent food borne infections. He can't eat anything raw: fresh veggies and most fruits are out' no deli meat, no bakery bread, no food more than 24 hours after preparation, etc. He can only drink certain types of bottled water, no rare meats, etc. And no eating out.
The well water was tested and is OK. We're having the heating / AC ducts cleaned out next week. Throwing away and area rug that was a hand-me-down (Kathy Hanson would call it "free-licious), and replacing it with a new one. Deep cleaning bathrooms, window sills, fridge, walls, bedding, etc.
Ryan will lose a significant amount of weight with the transplant - the radiation and additional drugs often cause loss of appetite and mouth sores. So we're trying to fatten him up now. It's kinda funny - Sophia and I are watching what we eat to try to lose the stress weight we've gained, and at the same time looking for ways to increase Ryan's caloric intake with nutritious foods.
For the two of them this is a time when they can get out a little bit, eat out at the favorite places, and check off Ryan's "bucket list" of things he wants to do and eat that will be prohibited for much of the next year.
Sophia is going to take courses to become a paralegal, and Ryan is taking a couple of BYU courses.
Mei:Lin and Kaia are back in school and seem to like their teachers, classes and classmates. They are both taking gymnastics, and Kaia is taking hiphop and tap dance. The tested for their "bo-dan" belts in TaeKwonDo this week - next is black belt. We're putting the Chinese language tutoring on hold until after I get home from Boston. Ryan will be in the hospital from Nov 12 - the end of November, then 30 days at Hope House. Maybe we'll be home for Thanksgiving or soon thereafter. It sounds like Christmas will be at home.
For those who are interested, our children are a case study in Mendelian genetics. The gene codes for the proteins in our stem cells involved in marrow transplant are located on a single chromosome, and we each have 2 involved chromosomes - one from our father and one from our mother. So if Tim had A and B, and I have C and D, our children could be AC, AD, BC or BD. By the roll of the dice each child has a 25% chance of being any of these. And, if you take hundreds of offspring (which, thankfully none of us actually have) 1/4 will have each type.
Of our four older children, we have: AC, AD, BC and BD. Pretty amazing!! Ryan is our 5th child - and that's why there is only one match. If Ryan is AC, Missy is BD - no stem cell chromosomes similarity at all. Sean and Shannon each share on strand with Ryan, but that means they only have half the same genetic material as Ryan. And Meghan is indeed a "perfect" match - also an AD.
That means none of the other three could be a match for each other. So you'd better all not follow Ryan's footsteps!!
On September 4th, Ryan had his bone marrow biopsy at the conclusion of the second cycle of the CD22 antibody chemo. On Friday, September 7th, we saw Dr. Cutler - the transplant specialist. He told us that the marrow at the completion of Cycle one showed not only cellular remission, but also biochemical remission - meaning that all the specialized stains that can tell normal lymphocytes from cancerous ones failed to detect any cancer cells! Although the results of the marrow biopsy from 3 days earlier were not complete, he anticipated that it would confirm remission as well.
He discussed the potential liver damage from the chemo, and although Ryan's liver function has been normal throughout, there have been some cases of hepatic vascular occlusive disease after transplant in patients treated with this chemo. It appears that the combination of this particular chemo and one of the medications used to prevent graft versus host disease ("GVH" disease - where the "new" marrow from the donor recognizes the recipient's body as being "foreign" and attacks it) results in a higher incidence of this severe liver condition. The GVH drug is used frequently at Dana Farber in addition to the standard protocols for GVH. So in patients like Ryan, they avoid the use of that particular GVH drug.
We also met with the housing coordinator from the transplant service, and filled out an application to stay at the Hope House - sponsored by a pharmaceutical company, it is specially designed for patients immediately post transplant, with suites for the patient and a caretaker, who is required to be with the patient at all times. Each patients has a suite and their own refrigerator, etc. There is no cost to stay at the facility!!
At that point the transplant was planned for November, and Ryan was scheduled to start the third cycle of the chemo starting on the 10th.
On the drive to Boston on the 10th, I got the strong impression that I was uncomfortable with Ryan having the additional chemo, fearing that it might further increase the risk of hepatic vascular occlusive disease and wondering - since he was already in remission - what benefit we gained. Yet I was so thankful that the clinical trial drug had saved Ryan's life, that I didn't want to be unreasonable demanding removal from the protocol or offending those who had saved his life. I asked Ryan if it was OK if I asked Dr. Steensma about the pros and cons. Ryan voiced the same concerns. So we went into the appointment with a list of questions - somewhat apprehensive to be questioning the additional chemo, yet feeling that we shouldn't do it.........
Dr. Steensma came into the room and immediately told us that he and Dr. Cutler had been discussing Ryan's care, and that they would prefer to fore go the third cycle of chemo and move the transplant up to October. Within half an hour we were back on the schedule for October. I immediately called Meghan to let her know, assuming that she had rearranged her work schedule and her life based on the November dates. And, of course, she had. Then we called the housing coordinator to let her know there was a change in the dates we would need to be there.
Ryan had the first of two intrathecal chemo injections (chemo in the spinal fluid via spinal tap), and we left for home hours earlier that we had planned since the clinical trial chemo was not done.
Since then we've been working out the logistics of getting Ryan back for his pre-transplant tests earlier than planned because of a Catch 22 with the insurance. He can't be officially approved for the stem cell transplant until his testing is complete. This means that his donor - Meghan - can't be seen at Boston for her physical exam and testing. If we wait until Ryan's October 2nd appointment, the insurance approval may not come until days before the transplant, necessitating Meghan be here a lot longer that she had planned.
Of course, we didn't discover this problem until Friday afternoon. We left messages for the transplant coordinator, expecting they would deal with it on Monday. They called today and have moved Ryan's appointment to this coming Monday. That are so fantastic at working with us and accommodating our needs and requests.
Meghan's job is as an advertising account executive - and she is in charge of the LDS Church's social media, including mormon.org. Because of Mitt Romney's candidacy, there has been a huge upsurge in interest in the church, so her job has been in really high gear, and will continue to be until after the election (or maybe even longer if he's elected). So she is trying to make a quick trip here on a Friday or Monday for the initial physical, catching a red-eye to minimize the time away from work. And she'll be planning to do a lot of work while she's here for the donation.
At home we're preparing in a number of ways - got a second fridge/freezer to put in the garage so we can separate things for Ryan from things like onions that my have mold of microbes, and we can freeze and store single servings of food for lunches, etc. After the transplant he will have significant restrictions for a while to prevent food borne infections. He can't eat anything raw: fresh veggies and most fruits are out' no deli meat, no bakery bread, no food more than 24 hours after preparation, etc. He can only drink certain types of bottled water, no rare meats, etc. And no eating out.
The well water was tested and is OK. We're having the heating / AC ducts cleaned out next week. Throwing away and area rug that was a hand-me-down (Kathy Hanson would call it "free-licious), and replacing it with a new one. Deep cleaning bathrooms, window sills, fridge, walls, bedding, etc.
Ryan will lose a significant amount of weight with the transplant - the radiation and additional drugs often cause loss of appetite and mouth sores. So we're trying to fatten him up now. It's kinda funny - Sophia and I are watching what we eat to try to lose the stress weight we've gained, and at the same time looking for ways to increase Ryan's caloric intake with nutritious foods.
For the two of them this is a time when they can get out a little bit, eat out at the favorite places, and check off Ryan's "bucket list" of things he wants to do and eat that will be prohibited for much of the next year.
Sophia is going to take courses to become a paralegal, and Ryan is taking a couple of BYU courses.
Mei:Lin and Kaia are back in school and seem to like their teachers, classes and classmates. They are both taking gymnastics, and Kaia is taking hiphop and tap dance. The tested for their "bo-dan" belts in TaeKwonDo this week - next is black belt. We're putting the Chinese language tutoring on hold until after I get home from Boston. Ryan will be in the hospital from Nov 12 - the end of November, then 30 days at Hope House. Maybe we'll be home for Thanksgiving or soon thereafter. It sounds like Christmas will be at home.
For those who are interested, our children are a case study in Mendelian genetics. The gene codes for the proteins in our stem cells involved in marrow transplant are located on a single chromosome, and we each have 2 involved chromosomes - one from our father and one from our mother. So if Tim had A and B, and I have C and D, our children could be AC, AD, BC or BD. By the roll of the dice each child has a 25% chance of being any of these. And, if you take hundreds of offspring (which, thankfully none of us actually have) 1/4 will have each type.
Of our four older children, we have: AC, AD, BC and BD. Pretty amazing!! Ryan is our 5th child - and that's why there is only one match. If Ryan is AC, Missy is BD - no stem cell chromosomes similarity at all. Sean and Shannon each share on strand with Ryan, but that means they only have half the same genetic material as Ryan. And Meghan is indeed a "perfect" match - also an AD.
That means none of the other three could be a match for each other. So you'd better all not follow Ryan's footsteps!!
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