Acute Lymphoblastic Leukemia recurrences often are in the Central Nervous System - the brain. For this reason, pre-transplant brain radiation is done at a dosage known to be effective for leukemia. This preventative therapy involves a significantly lower dose than than is used to treat brain tumors.
Today Ryan started his brain radiation. It took less than 10 minutes, and he felt great afterwards - well enough that he want to go to Salem for the afternoon. We made the 20 minute trip, only for him to develop a severe headache. After no response to a couple of Tylenol with codeine, he called his doctor and we headed back to Dana Farber to fill the prescription.
Hoping a nap would help, I took them to their hotel. I had reserved an inexpensive room via Priceline.com in a different hotel so they could have their last night together without me around. In my room I savored the warm chocolate chip cookie given to me on admission along with a cup of herbal tea, and crawled under the covers.
Then Ryan called to say he was throwing up and his headache was worse than ever.
So I got out of the cozy bed and packed up. We headed to the ER for IV fluids, nausea meds and some IV morphine. Since he was scheduled to be admitted the next day the decision was made to just go ahead and admit him. Sophia and I left at midnight to get some rest.
Friday morning, Ryan was still in the ER. No beds were available for admission. Plan B was to have his central lines placed as scheduled at 12:30, followed by brain radiation, then admission. At 1:00 he was still waiting, so Sophia and I went to grab some lunch. While we were gone, the transplant doctor on duty (Dr. Cutler was out of town) came to see him and noted that he had a cough (tail end of a virus MeiLin shared with all of us...), and told Ryan that although they wouldn't be giving him cytoxan while he had an possible infection, they would proceed with the line placement and last dose of brain radiation.
Then Meghan called to ask what was happening because she had gotten a voice mail saying that they were going ahead with her donation "anyway". When she reached the donor nurse she was told that Ryan had been postponed a week, but her collection was to proceed as scheduled.
Two more hours of waiting in the ED with nothing happening. I called our transplant nurse who confirmed the postponement and apologized - she thought the doctor on duty had informed Ryan. Although Ryan was to proceed with the brain radiation, the line placement would wait until his admission next week (makes sense since the longer the lines or any foreign body is in place, the higher the risk of infection). We asked that Ryan be admitted overnight for pain and nausea control.
Ryan tolerated the second radiation dose better than the first, but was glad to be where he got adequate pain relief and nausea control.
Home to New York on Saturday afternoon with Ryan and Sophia, dinner with the family, tucked the girls in, then drove back to Boston to get some rest before meeting Meghan's red-eye from Phoenix at 10 am Sunday morning.
There is no doubt that the decision to delay was the correct one medically. But it kinda took the wind out of our sails. We were all geared up to "git 'er done", and it was disheartening to wait another week.
I had to ask if there was a downside to having a week between the donation and the transplant. Meghan's cells will be cryopreserved (frozen), where up to 50% may not survive the freezing and defrosting. So she will undergo collection for two days for sure, rather than one day with a possible second day. They'll simply collect twice as many cells. The amount of cells transplanted in Ryan will be the same, and will be just as healthy, with just as good results.
---Barb
Thursday, October 18, 2012
Wednesday, October 17, 2012
October 10: Busy week before the transplant
It's been a crazy week as I scramble to get everything ready for my absence and Ryan enjoys the things that he won't be able to do for quite a while after his transplant. Sophia has been at home and they've been able to do things together.
The Halloween costumes for the girls are nearly done - for the first time in my life I was trembling as I threaded the needle. While I recognize that stress in as inherent part of this journey, I've kept so busy doing what needs to be done that I haven't taken time to recognize the always-present stress and fear that lies beneath the surface.
Ryan has been remarkably upbeat through this whole thing, but this week he's irritable - especially with Kaia. And she responds by making remarks about him not being in our "family" anyway - wishing that things were back to "normal" with just the four of us at home. I also suspect that it's Kaia's way of protecting herself from the hurt of possibly losing Ryan. The trauma of her adoption still surfaces sometimes in a reluctance to trust and allow herself to make bonds that could end (like her attachment to her Chinese nannies betrayed her trust as they gave her away to strangers - us). So she's had a few meltdowns as well.
In our "life happens" update: car problems. The passenger side visor starting flopping down - an annoyance to whoever is seated there, and the air bag light came on. Of course, the only day the shops could fit me in was the day before we leave for Boston. Visor fixed - no problem. But the airbag sensor in the passenger seat bottom is malfunctioning and the seat bottom needs to be sent to California for repairs. So they give me a rental car, but want it back in 3 days while I will still be in Boston. So Tim will drive the rental and I will take his car to Boston. The tender mercy in all this is that it didn't cost anything. Whew!!!
In the humor department: The poor guys who did my first-ever car detailing earned their pay! My car is the ultimate "cheerio-mobile". Pretty dirty - even after taking out the raisins, French fries and hair ties. When I went to pick it up, they said they had removed 5 1/2 pounds of birdseed from the spare tire well under the trunk!! I had forgotten that a 5 gallon pail of birdseed for a second grade class birdfeeder project spilled in the trunk 2 years ago!! Another tender mercy - realizing that I didn't have a flat tire in the past 2 years.......
(if anyone needs a car detailed, give the guys at Carlito's Extreme Detailing in Clifton Park a shot - I highly recommend them!) But I'm so embarassed, I
Packing for a prolonged stay in Boston, appreciating those who will be bringing some meals to Tim and the girls, feeling conflicted about where my time should be spent - with my young daughters or my son with leukemia - not to mention my stalwart husband. This, too, shall pass.
---Barb
The Halloween costumes for the girls are nearly done - for the first time in my life I was trembling as I threaded the needle. While I recognize that stress in as inherent part of this journey, I've kept so busy doing what needs to be done that I haven't taken time to recognize the always-present stress and fear that lies beneath the surface.
Ryan has been remarkably upbeat through this whole thing, but this week he's irritable - especially with Kaia. And she responds by making remarks about him not being in our "family" anyway - wishing that things were back to "normal" with just the four of us at home. I also suspect that it's Kaia's way of protecting herself from the hurt of possibly losing Ryan. The trauma of her adoption still surfaces sometimes in a reluctance to trust and allow herself to make bonds that could end (like her attachment to her Chinese nannies betrayed her trust as they gave her away to strangers - us). So she's had a few meltdowns as well.
In our "life happens" update: car problems. The passenger side visor starting flopping down - an annoyance to whoever is seated there, and the air bag light came on. Of course, the only day the shops could fit me in was the day before we leave for Boston. Visor fixed - no problem. But the airbag sensor in the passenger seat bottom is malfunctioning and the seat bottom needs to be sent to California for repairs. So they give me a rental car, but want it back in 3 days while I will still be in Boston. So Tim will drive the rental and I will take his car to Boston. The tender mercy in all this is that it didn't cost anything. Whew!!!
In the humor department: The poor guys who did my first-ever car detailing earned their pay! My car is the ultimate "cheerio-mobile". Pretty dirty - even after taking out the raisins, French fries and hair ties. When I went to pick it up, they said they had removed 5 1/2 pounds of birdseed from the spare tire well under the trunk!! I had forgotten that a 5 gallon pail of birdseed for a second grade class birdfeeder project spilled in the trunk 2 years ago!! Another tender mercy - realizing that I didn't have a flat tire in the past 2 years.......
(if anyone needs a car detailed, give the guys at Carlito's Extreme Detailing in Clifton Park a shot - I highly recommend them!) But I'm so embarassed, I
Packing for a prolonged stay in Boston, appreciating those who will be bringing some meals to Tim and the girls, feeling conflicted about where my time should be spent - with my young daughters or my son with leukemia - not to mention my stalwart husband. This, too, shall pass.
---Barb
Tuesday, October 16, 2012
October 2nd: More stress and blessings
Driving home from our counseling session feeling glum already, Ryan got a call from Sophia that she had been laid off. At first it felt like one more painful blow. Ryan was totally exasperated. Already overwhelmed with the scary medical details discussed in Boston, he looked like he'd been sucker-punched.
As the miles passed, the realization hit that this may be a blessing in disguise. Notwithstanding the hurt Sophia was feeling and the loss of income for them, there are several advantages. Sophia will be able to be with him in Boston. With Sophia as the "caretaker", reduced cost hotel rooms ($40/day rather than $169 for the same room at the same hotel) will now be available since Sophia meets the "means testing" for income eligibility for the program and I don't. Not that we are hurting, and we know that we are very blessed financially compared to most people who experience this - but the constant travel, meals away from home, gas & lodging really do add up. Now Sophia will be able to stay in a hotel within the allotted per diem the insurance pays (which in itself is another incredible blessing), with a little left for food.
And I will be able to be home more with the girls and Tim. Although Tim is remarkably self-sufficient, there are things that moms do that dads don't, and some things that are a priority to me that aren't to him (practicing piano, doing Chinese lessons on-line, etc). And let's face it - having Mommie tuck you in is something that just can't be replaced. And it's good for Mom, too!
I'll be putting on more milage, but at this point the car is on auto-pilot between home and Boston. Thanks to some great audiobooks, the miles fly by pretty quickly.
So we'll change to plan B and appreciate that Ryan and Sophia can be together. Unlike my little girls, he is at the point in his life where someone other than Mom is his rock and his cheerleader.
---Barb
As the miles passed, the realization hit that this may be a blessing in disguise. Notwithstanding the hurt Sophia was feeling and the loss of income for them, there are several advantages. Sophia will be able to be with him in Boston. With Sophia as the "caretaker", reduced cost hotel rooms ($40/day rather than $169 for the same room at the same hotel) will now be available since Sophia meets the "means testing" for income eligibility for the program and I don't. Not that we are hurting, and we know that we are very blessed financially compared to most people who experience this - but the constant travel, meals away from home, gas & lodging really do add up. Now Sophia will be able to stay in a hotel within the allotted per diem the insurance pays (which in itself is another incredible blessing), with a little left for food.
And I will be able to be home more with the girls and Tim. Although Tim is remarkably self-sufficient, there are things that moms do that dads don't, and some things that are a priority to me that aren't to him (practicing piano, doing Chinese lessons on-line, etc). And let's face it - having Mommie tuck you in is something that just can't be replaced. And it's good for Mom, too!
I'll be putting on more milage, but at this point the car is on auto-pilot between home and Boston. Thanks to some great audiobooks, the miles fly by pretty quickly.
So we'll change to plan B and appreciate that Ryan and Sophia can be together. Unlike my little girls, he is at the point in his life where someone other than Mom is his rock and his cheerleader.
---Barb
Monday, October 15, 2012
Cot 2: Pre-transplant counseling......
(This post is late - the counseling was two weeks ago, but I want to include it here for those who may follow on this path - then I'll update on what's happened since then)
Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11. Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details. In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.
Bottom line: it's SCARY. He had previously discussed some of the risks, such as hepatic occlusive disease, with us. And of course infectious risk seems obvious. I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat.
The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition. That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.
I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures. The doctor asked whether he wanted breathing tubes, etc. Ryan's initial reaction was that he'd rather not have them. The doctor replied that of course no one wants them and these aren't used unless necessary. Ryan repeated that he'd rather not have them. I unstantly recognized that we were talking life support.
I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying. And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering. At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary. Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway). Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.
Ryan signed the consents.
The ride home was somber. The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.
The weather was gray, and so was our mood.
Until this point, we had been sailing forward toward this future, happy to have survived to this point. Once again: what choice do we have? Going boldly where we never wanted to go. Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.
---Barb
Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11. Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details. In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.
Bottom line: it's SCARY. He had previously discussed some of the risks, such as hepatic occlusive disease, with us. And of course infectious risk seems obvious. I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat.
The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition. That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.
I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures. The doctor asked whether he wanted breathing tubes, etc. Ryan's initial reaction was that he'd rather not have them. The doctor replied that of course no one wants them and these aren't used unless necessary. Ryan repeated that he'd rather not have them. I unstantly recognized that we were talking life support.
I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying. And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering. At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary. Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway). Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.
Ryan signed the consents.
The ride home was somber. The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.
The weather was gray, and so was our mood.
Until this point, we had been sailing forward toward this future, happy to have survived to this point. Once again: what choice do we have? Going boldly where we never wanted to go. Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.
---Barb
Saturday, October 6, 2012
October 2 - Sobering details of what lies ahead
We went to Boston last weekend for a mini family vacation at a hotel with a pool - timed to coincide with Meghan's trip for her preliminary testing. The "kids" (everybody but Tim) and I went on the MBTA to the Aquarium and Quincy Market, and the little girls spent a lot of time in the pool. Tim and Sophia and the girls left for Albany on Monday.
Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect. She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections. She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days. On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells. The lab will "count" them and then they will be infused into Ryan very soon thereafter. If they were unable to harvest enough, the process will be repeated on Friday.
Meghan has some friends in Boston. She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.
Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday. His first appointment was with the radiation oncologist. She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday. To stabilize his head during the radiation he was fitted for a mask. To do this, they heat a plastic mesh sheet and press it down over his head. When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard.
And the TBI - total body irradiation, which will be divided into 7 doses over four days. Sobering discussion of the side effects and potential complications. Short-term, Ryan can expect to be extremely weak and tired. Long-term: expect development of cataracts at a younger age, and thyroid failure. My understanding was that both are pretty much expected rather than possibilities. There can be swelling of the parotid gland and mouth sores. Consents signed - what choice do we have, really? Glad he'll be alive to have cataracts and hypothyroidism.
(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)
Then on to meet with a social worker. They offer emotional support and practical support such as help finding housing for the "Caretaker". Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her. Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far. Yet this is the first time any kind of emotional support has been offered. Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network.
Next we met with Pat Byrne - our transplant nurse case manager. Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control. So we can't help but be very fond of Pat. Pat explained the procedure from start to finish:
Thursday, October 11: Ryan receives out-patient CNS radiation - just a few minutes.
Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology. These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc. Then he receives his second and final dose of CNS radiation.
Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy. It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently. This will also be given on Sunday. He'll lose his hair again.
Sunday, October 14 - Second day of Cytoxan for Ryan. Megan arrives and starts her Neupegen.
Monday through Wednesday: Ryan gets twice daily TBI - total body radiation. Meghan gets daily injections - she might feel well, and might have flu-like symptoms.
Thursday - Ryan get his last TBI. Meghan has phoresis. Ryan receives the transplant. The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.
Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells. Ryan's new cells start to find their way to his marrow.
Pat told us what we need to do before and after to protect Ryan from infection. The dietary and social restrictions. And more. He needs to change his clothes daily. Keep visitors to a minimum. Visitors will need to wear masks. Luggage, etc, that might have germs can't enter the room. There will be very close monitoring by his nurses. He'll have frequent blood tests to follow his progress.
She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them. They're all rooting for him.
For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber. The positivity and personal care we've received has been really impressive.
Then labs.
Then his appointment with Dr. Cutler - his transplant physician. But it's getting late, so that's a story for another post.........
---Barb
Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect. She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections. She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days. On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells. The lab will "count" them and then they will be infused into Ryan very soon thereafter. If they were unable to harvest enough, the process will be repeated on Friday.
Meghan has some friends in Boston. She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.
Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday. His first appointment was with the radiation oncologist. She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday. To stabilize his head during the radiation he was fitted for a mask. To do this, they heat a plastic mesh sheet and press it down over his head. When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard.
And the TBI - total body irradiation, which will be divided into 7 doses over four days. Sobering discussion of the side effects and potential complications. Short-term, Ryan can expect to be extremely weak and tired. Long-term: expect development of cataracts at a younger age, and thyroid failure. My understanding was that both are pretty much expected rather than possibilities. There can be swelling of the parotid gland and mouth sores. Consents signed - what choice do we have, really? Glad he'll be alive to have cataracts and hypothyroidism.
(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)
Then on to meet with a social worker. They offer emotional support and practical support such as help finding housing for the "Caretaker". Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her. Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far. Yet this is the first time any kind of emotional support has been offered. Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network.
Next we met with Pat Byrne - our transplant nurse case manager. Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control. So we can't help but be very fond of Pat. Pat explained the procedure from start to finish:
Thursday, October 11: Ryan receives out-patient CNS radiation - just a few minutes.
Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology. These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc. Then he receives his second and final dose of CNS radiation.
Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy. It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently. This will also be given on Sunday. He'll lose his hair again.
Sunday, October 14 - Second day of Cytoxan for Ryan. Megan arrives and starts her Neupegen.
Monday through Wednesday: Ryan gets twice daily TBI - total body radiation. Meghan gets daily injections - she might feel well, and might have flu-like symptoms.
Thursday - Ryan get his last TBI. Meghan has phoresis. Ryan receives the transplant. The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.
Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells. Ryan's new cells start to find their way to his marrow.
Pat told us what we need to do before and after to protect Ryan from infection. The dietary and social restrictions. And more. He needs to change his clothes daily. Keep visitors to a minimum. Visitors will need to wear masks. Luggage, etc, that might have germs can't enter the room. There will be very close monitoring by his nurses. He'll have frequent blood tests to follow his progress.
She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them. They're all rooting for him.
For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber. The positivity and personal care we've received has been really impressive.
Then labs.
Then his appointment with Dr. Cutler - his transplant physician. But it's getting late, so that's a story for another post.........
---Barb
Wednesday, September 26, 2012
September 26th - The Check List and The Bucket List
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
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
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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