Back to Boston today for more CD22 antibody. We've got this down to science now - a good audio book, a couple rest stops for bathrooms and sodas, all the way to Dana Farber without turning on the GPS!!
Ryan's labs are essentially the same as last week - which is a good thing. His marrow is producing red blood cells, platelets and neutrophils (in Ryan's case these are non-cancerous, while the lymphocyes have become cancerous). Don't know how well the "good" WBCs are working, as the physician assistant reminds us, but they are steady at 1500. With prior chemo, the good cells were the first to go and the last to recover. Now they aren't being affected by the CD22 antibody, while the lymphocytes have decreased and there are ZERO "blasts" - the immature cancers cells.
That doesn't mean there are no cancer cells in his body - the "differential", or "diff" for short, looks at which WBCs are present and expresses them as a percentage. Just because there were no blasts identified in the cells that were counted doesn't mean there aren't some in his circulation, or in his marrow.
The chemo will be given in 4 week cycles: "Pre-treatment" labs and marrow biopsy, followed by Chemo at 7 day intervals on Days 1, 8, 15, 22. Then Day 29 is a follow-up marrow biopsy.
The protocol includes up to 6 cycles, or roughly 6 months, of the treatment.
My understanding is that once Ryan is in remission based on marrow results, they will proceed to CNS chemo, the stem cell transplant.
The transplant coordinator hasn't heard anything about Sean's HLA typing yet - she's going to check and call me on Wednesday. I have such mixed feelings - they described Meghan as a "perfect" match and we're absolutely delighted about that. When we were first seen by the transplant physician, he said that if 2 siblings are equal matches, they would prefer the male. So part of me is hoping that Sean is also a match. But as Meghan has so graciously pointed out, it will be easier for her to take time off work than it will be for Sean or Missy to be away from their families.
A little humor in this whole process - Sean and I were joking about being glad I had enough kids to have a "prefect" match. Then Sean pointed out that if I had stopped at 4, I wouldn't be needing a donor.........
With a successful Youth Conference in the rear view mirror, I'm off to Minnesota to kick back and free load off my brother's family for a week.
Uff da!!! Off to Minn-a-SO-ta, you betcha dats fer sure!!! (working on my scandahoovian)
---Barb
Monday, July 30, 2012
Thursday, July 26, 2012
July 26 - We have a donor!!
We got the call early Tuesday morning that Meghan is a "perfect match"!!!!!! I was so excited that I called Meghan (forgetting the 3 hour difference between here and AZ) and woke her up to tell her. She was a bit groggy. Not known to be be a "morning person", she perked up and was pretty cheerful in spite of the early hour.
Meghan thought from the very beginning that she would be the match, and said she hoped it would be her. In terms of personal obligations, she has more flexibility than Missy & Sean, who have kids. And unlike Shannon, Meghan has paid time off.
I also immediately told Ryan, who was still asleep. He muttered something like, "That's great!" and went back to sleep. Three hours later he overheard me talking to someone else about Meghan being the match and asked when I was going to tell him!!
We don't know yet what this will involve for Meghan. What additional tests she'll need. How long she'll need to be in Boston. I'm sure that the transplant team will be informing us soon.
Sean is still a possibility - they haven't processed his specimen yet. If he is also a "perfect match", he would be preferred since he is male.
Ryan is still sick, but not as bad as last week. The mornings are the worst - probably a combination of mild dehydration after not drinking all night and the nausea meds having worn off. After he takes his meds and drinks he feels a little better. He drinks and nibbles through the day. By late last night he felt well enough to go out and get a Subway sandwich.
Sophia went out to dinner with a couple friends last night. I'm sure it was a nice break for her. She works all day and comes home to our usual household mayhem and a hubby who is getting pretty lonesome.
I'm in the final stages of Youth Conference prep - it starts tonight. Only 160 kids this year and a great support team, so it's relatively easy. But I'm sure I'll be pretty shot after trying to keep up with - or ahead of - a crowd of teens over the next 3 days.
Next Tuesday Tim and I and the girls will be heading to Minnesota to spend a week at Uncle Tom's Cabin. My brother and his family have built a cabin on Little Toad Lake and we have never been there. So we're finally taking them up on their invitation and looking forward to a week away. By now Ryan knows his way to the hospital, and Sophia is taking a Monday off to go with him. Yet part of me worries about him needing transfusion or getting a fever, etc, while I am not here. I'll just have to call in my wonderful friends to bail us out if that happens.
Things are looking up and seem to be coming together for a success. In the early stages soon after his diagnosis, the doctors were talking about achieving "remission", but wouldn't use the word "cure". The transplant nurse at Dana Farber said flat out, "We're going for a CURE. Not suppression, not remission. CURE". Now it's starting to seem safe to let my heart believe that we can have a CURE!!!
---Barb
Meghan thought from the very beginning that she would be the match, and said she hoped it would be her. In terms of personal obligations, she has more flexibility than Missy & Sean, who have kids. And unlike Shannon, Meghan has paid time off.
I also immediately told Ryan, who was still asleep. He muttered something like, "That's great!" and went back to sleep. Three hours later he overheard me talking to someone else about Meghan being the match and asked when I was going to tell him!!
We don't know yet what this will involve for Meghan. What additional tests she'll need. How long she'll need to be in Boston. I'm sure that the transplant team will be informing us soon.
Sean is still a possibility - they haven't processed his specimen yet. If he is also a "perfect match", he would be preferred since he is male.
Ryan is still sick, but not as bad as last week. The mornings are the worst - probably a combination of mild dehydration after not drinking all night and the nausea meds having worn off. After he takes his meds and drinks he feels a little better. He drinks and nibbles through the day. By late last night he felt well enough to go out and get a Subway sandwich.
Sophia went out to dinner with a couple friends last night. I'm sure it was a nice break for her. She works all day and comes home to our usual household mayhem and a hubby who is getting pretty lonesome.
I'm in the final stages of Youth Conference prep - it starts tonight. Only 160 kids this year and a great support team, so it's relatively easy. But I'm sure I'll be pretty shot after trying to keep up with - or ahead of - a crowd of teens over the next 3 days.
Next Tuesday Tim and I and the girls will be heading to Minnesota to spend a week at Uncle Tom's Cabin. My brother and his family have built a cabin on Little Toad Lake and we have never been there. So we're finally taking them up on their invitation and looking forward to a week away. By now Ryan knows his way to the hospital, and Sophia is taking a Monday off to go with him. Yet part of me worries about him needing transfusion or getting a fever, etc, while I am not here. I'll just have to call in my wonderful friends to bail us out if that happens.
Things are looking up and seem to be coming together for a success. In the early stages soon after his diagnosis, the doctors were talking about achieving "remission", but wouldn't use the word "cure". The transplant nurse at Dana Farber said flat out, "We're going for a CURE. Not suppression, not remission. CURE". Now it's starting to seem safe to let my heart believe that we can have a CURE!!!
---Barb
Monday, July 23, 2012
Day 8 of CD22 antibody - Monday, July 23
Not much to post over the past week. Ryan got his first dose of the CD22 antibody therapy 7 days ago. It was a long, dragged out day - probably typical of any "first". Especially given the hurry with which they got him on the protocol.
Since the first dose, he has struggled daily with severe nausea and occasional light-headedness. No vomiting, but no appetite either. It has been a really tough week for him. He lost 6 pounds.
No news yet on the siblings HLA testing.
All week, I've been praying that this would work, that his nausea was a sign of progress (no rational explanation for that thought - proof we grab at straws....), that his results today would show a response, that I'd be able to deal with whatever they would be. I've been approaching today's trip with a schizoid mixture of hopeful anticipation and dread.
Today we drove to Boston, got his labs drawn, and waited. And waited. In the waiting room he saw his friend Bob from when they were both patients at Albany Med. Bob has a rare and aggressive form of leukemia. He got his transplant at DFCI about a month ago and is home and doing well. That was encouraging.
Then the big moment - the appointment with the physician assistant. She came in with a huge smile on her face. His response was fantastic!! Of course, she reminded us, this doesn't mean we have any guarantees. But the grin on her face said a lot!
His WBC was 1900 - down from 27,800 last week. And zero "blasts" - the immature forms of the lymphocytes. Platelets and red blood measurements are all good. And, best of all - the neutrophils outnumber the lymphocytes 3:1 - closer to the normal ratio. That's the first time we've seen that since his diagnosis. Finally something is preferentially knocking out the lymphocytes while the marrow is still producing the healthy WBCs. And all the other labs - liver, etc - were absolutely normal.
I wanted to jump up and down and shout!!! Ryan was pleased as well, but his response was subdued due to his nausea.
Then off to get his second dose of CD22 antibody.
The results don't make the nausea any better, and I suspect getting the second dose today means we'll see more misery this week - but at least he now has reason to hope that he's not going through all the misery for nothing.
I get goose bumps just thinking about it - what a miracle!!!!
---Barb
Since the first dose, he has struggled daily with severe nausea and occasional light-headedness. No vomiting, but no appetite either. It has been a really tough week for him. He lost 6 pounds.
No news yet on the siblings HLA testing.
All week, I've been praying that this would work, that his nausea was a sign of progress (no rational explanation for that thought - proof we grab at straws....), that his results today would show a response, that I'd be able to deal with whatever they would be. I've been approaching today's trip with a schizoid mixture of hopeful anticipation and dread.
Today we drove to Boston, got his labs drawn, and waited. And waited. In the waiting room he saw his friend Bob from when they were both patients at Albany Med. Bob has a rare and aggressive form of leukemia. He got his transplant at DFCI about a month ago and is home and doing well. That was encouraging.
Then the big moment - the appointment with the physician assistant. She came in with a huge smile on her face. His response was fantastic!! Of course, she reminded us, this doesn't mean we have any guarantees. But the grin on her face said a lot!
His WBC was 1900 - down from 27,800 last week. And zero "blasts" - the immature forms of the lymphocytes. Platelets and red blood measurements are all good. And, best of all - the neutrophils outnumber the lymphocytes 3:1 - closer to the normal ratio. That's the first time we've seen that since his diagnosis. Finally something is preferentially knocking out the lymphocytes while the marrow is still producing the healthy WBCs. And all the other labs - liver, etc - were absolutely normal.
I wanted to jump up and down and shout!!! Ryan was pleased as well, but his response was subdued due to his nausea.
Then off to get his second dose of CD22 antibody.
The results don't make the nausea any better, and I suspect getting the second dose today means we'll see more misery this week - but at least he now has reason to hope that he's not going through all the misery for nothing.
I get goose bumps just thinking about it - what a miracle!!!!
---Barb
Monday, July 16, 2012
Day 1 of CD22 therapy - Monday, July 16, 2012
Blogging from the infusion room in the clinical trials suite at Dana Farber. Today is Day 1 of the CD22 antibody trial.
Arrived late this morning is spite of allowing and extra hour to get here - smooth sailing all the way to the interstate exit just a mile or two from the hospital, then gridlock.
Everything for the study is done in the clinical trials suite, so there is no chasing around. Started off with one IV to draw the labs. Then an appointment with Dr. Steensma. He said something about a snag with the pathologist this morning, but that it had been smoothed out. Wonder what that was all about.... Had to await the final OK from the head of the trial (I think at another institution) before starting the protocol. A series of 3 EKGs, 2 mnutes apart. Then a second IV, premedication with tylenol and benadryl and solumedrol (steroid). Then the chemo. After the chemo another EKG series, and several lab draws out of the first IV (not the one they gave the chemo through) to follow blood levels of the drug and document its pharmacokinetics - how the drug acts in the body - in this case, following the levels in the blood as they change for the first few hours after the infusion.
Ryan's WBC this morning was 27,000 - up from 13,000 on Friday and 500 a week before that (normal is roughly 5,000 - 10,000). So the leukemia growth is still raging. Dr. Steensma said that it may be in part due to a natural "rebound' after being so low, but it's largely due to the leukemia. He reassured us that in a week or two, we will most likely see that drop as the CD22 antibody starts to work. I didn't see the platelets or H&H.
It's pretty boring to sit here all day. I had lots of e-mails to do in preparation for Youth Conference and a good book to read. Ryan napped for a while after the benadryl, and is reading a book now. We picked up an audio book from Cracker Barrel this morning to listen to in the car, but it was BOR-ING!! We made it through 2 CDs and gave up. Oh well, it only costs $3.50 a week to use Cracker Barrel's audio books. I had to pay a deposit of $49 - the cost of the book. It will be refunded, minus the $3.50, when I return it. The only good thing about this particular book was that I didn't pay $49 to buy it!!
OK - 'nuf whining.
We were told we'd be here for 4 hours today, and it's turning into 8. (Oops - sounds like more whining....) Ryan and I will still be home in our own beds tonight, so we can't complain. But poor Julie Andrew is stuck with my girls a lot longer than she had bargained for since Tim had to go to Watertown today. I OWE you, Julie!!!! You can go ahead and whine!
In spite of the inconveniences, which in the big picture are minimal, I am excited to be here and to have this option. This may be what saves Ryan's life.
Next up: Road Warriors!! The challenge is to see it I can ever pick the best lane outa Boston on our way home. If you are ever driving near me, or in the grocery store, never go in the lane I choose. It's guaranteed to slow to a snail's pace!
---Barb
Arrived late this morning is spite of allowing and extra hour to get here - smooth sailing all the way to the interstate exit just a mile or two from the hospital, then gridlock.
Everything for the study is done in the clinical trials suite, so there is no chasing around. Started off with one IV to draw the labs. Then an appointment with Dr. Steensma. He said something about a snag with the pathologist this morning, but that it had been smoothed out. Wonder what that was all about.... Had to await the final OK from the head of the trial (I think at another institution) before starting the protocol. A series of 3 EKGs, 2 mnutes apart. Then a second IV, premedication with tylenol and benadryl and solumedrol (steroid). Then the chemo. After the chemo another EKG series, and several lab draws out of the first IV (not the one they gave the chemo through) to follow blood levels of the drug and document its pharmacokinetics - how the drug acts in the body - in this case, following the levels in the blood as they change for the first few hours after the infusion.
Ryan's WBC this morning was 27,000 - up from 13,000 on Friday and 500 a week before that (normal is roughly 5,000 - 10,000). So the leukemia growth is still raging. Dr. Steensma said that it may be in part due to a natural "rebound' after being so low, but it's largely due to the leukemia. He reassured us that in a week or two, we will most likely see that drop as the CD22 antibody starts to work. I didn't see the platelets or H&H.
It's pretty boring to sit here all day. I had lots of e-mails to do in preparation for Youth Conference and a good book to read. Ryan napped for a while after the benadryl, and is reading a book now. We picked up an audio book from Cracker Barrel this morning to listen to in the car, but it was BOR-ING!! We made it through 2 CDs and gave up. Oh well, it only costs $3.50 a week to use Cracker Barrel's audio books. I had to pay a deposit of $49 - the cost of the book. It will be refunded, minus the $3.50, when I return it. The only good thing about this particular book was that I didn't pay $49 to buy it!!
OK - 'nuf whining.
We were told we'd be here for 4 hours today, and it's turning into 8. (Oops - sounds like more whining....) Ryan and I will still be home in our own beds tonight, so we can't complain. But poor Julie Andrew is stuck with my girls a lot longer than she had bargained for since Tim had to go to Watertown today. I OWE you, Julie!!!! You can go ahead and whine!
In spite of the inconveniences, which in the big picture are minimal, I am excited to be here and to have this option. This may be what saves Ryan's life.
Next up: Road Warriors!! The challenge is to see it I can ever pick the best lane outa Boston on our way home. If you are ever driving near me, or in the grocery store, never go in the lane I choose. It's guaranteed to slow to a snail's pace!
---Barb
Saturday, July 14, 2012
Good news on Friday the 13th!!
Great trip to Boston yesterday - what a difference a week makes!
A flurry of preliminary tests - labs, EKG, cardiac echo, chest X-ray, and another bone marrow biopsy..............and Ryan is eligible for the CD22 antibody clinical trial!
Dr. Steensma seemed genuinely excited that Ryan was able to get into the trial. The number of subjects is limited (I'm guessing it's probably because the amount of the antibody drug is limited at this point). Ryan will be in Cohort (study group) 16. The dosage is higher in each cohort. My understanding is that there are three subjects in each cohort, and 3 medical centers - Johns Hopkins, Mass General and Dana Farber - participating in the study. So for an opening to be available right when Ryan needed it was a long shot.
To explain how the drug works, Dr. Steensma drew a diagram that I will try to replicate here......
TOXIN
I
antibody
{ }
II
cell
cellcellcell
cellcellcellcellcell
cellcellcell
cell
So....... the II represents the CD22 molecule on the surface of the cell - except there are LOTS on each lymphocyte.
The antibody - { } - is like a puzzle piece that fits perfectly onto the CD22 molecule and locks onto it.
The antibody is coupled with a molecule of toxin - meaning that the toxin is also locked onto the cell.
As lymphocytes covered with the CD22 molecule also become covered with the toxin, the body recognizes the toxin and removes it from the body, destroying the cell along with the toxin. From what I have read, CD22 is also present on other cells in the body in very small amounts, but the highest amount is on B lymphocytes, and it's especially high on some malignant lymphocytes like Ryan's. An "abundance" as his oncologist puts it.
Ryan will go to Boston once a week to have his blood tested to make sure his blood counts are high enough for another dose and to check his liver functions. Since the liver is responsible for clearing many toxins from the body they are seeing that patients occasionally have some transient liver inflammation, in which case they delay the next dose for a few days to a week. This sounds significantly less toxic than traditional chemo.
If the labs are OK, they prep the drug, which takes about 2 hours, followed by a 1 hour infusion. Then home until the next dose a week later. There will be marrow biopsies every four weeks. This will continue for 3-4 months. We start on Monday.
The results they have been seeing with this treatment are very encouraging, and Dr. Steensma is optimistic that Ryan will be in remission or at least have the tumor under control enough to proceed to stem cell transplant at the end of the treatment in 3-4 months - which would put the transplant in October or November. He will also need at least one more cycle of traditional chemo for CNS treatment before the transplant.
Sean's swabs are somewhere over the Atlantic right now as Shauna flies back to the States and should be tested next week. Meghan's and Shannon's are in the lab.
VERY encouraging news. From a selfish point of view, it's nice to have some predictability so I can plan for the rest of the family. Ryan also seems encouraged by the plan. Although he's not relishing the idea of monthly marrow biopsies (they are getting more and more painful) - he figures every 4 weeks is better than every 2 weeks. And he's relieved that it is all outpatient.
Many thanks to April Newman for getting the girls to camp. And thanks to Julie Andrew for volunteering to pick them up from Chinese camp on Monday.
Needless to say, we've pondered lots of aspects of life's adversities over the past few months. On our drive to Boston, Ryan and I had a chance to talk about this. Why me? Why us? What are we to learn from this? Faith kind of requires us to believe that there is a higher purpose in all things. Although we've all had some of the "why us" and "why Ryan" moments and moments of anger, it's surprising to find that my main emotion beyond fear is gratitude.
Gratitude for a son with such inner strength and optimism. For a daughter-in-law who has shown incredible resilience and strength. For my other children who haven't hesitated to step up and do whatever is necessary to help Ryan even at high personal cost to their families & careers.
For people at all levels of the medical system who have sacrificed their time and energy to develop knowledge, skills and compassion to serve others. Especially those "geeks" who toil away in labs and in the mysterious world of molecules!
For neighbors, friends, family and church family who are so supportive.
Even strangers like the team at the collision repair center who fast-tracked my car repairs so I could have my car in time to go to Boston.
We feel the blessings every day.
---Barb
A flurry of preliminary tests - labs, EKG, cardiac echo, chest X-ray, and another bone marrow biopsy..............and Ryan is eligible for the CD22 antibody clinical trial!
Dr. Steensma seemed genuinely excited that Ryan was able to get into the trial. The number of subjects is limited (I'm guessing it's probably because the amount of the antibody drug is limited at this point). Ryan will be in Cohort (study group) 16. The dosage is higher in each cohort. My understanding is that there are three subjects in each cohort, and 3 medical centers - Johns Hopkins, Mass General and Dana Farber - participating in the study. So for an opening to be available right when Ryan needed it was a long shot.
To explain how the drug works, Dr. Steensma drew a diagram that I will try to replicate here......
TOXIN
I
antibody
{ }
II
cell
cellcellcell
cellcellcellcellcell
cellcellcell
cell
So....... the II represents the CD22 molecule on the surface of the cell - except there are LOTS on each lymphocyte.
The antibody - { } - is like a puzzle piece that fits perfectly onto the CD22 molecule and locks onto it.
The antibody is coupled with a molecule of toxin - meaning that the toxin is also locked onto the cell.
As lymphocytes covered with the CD22 molecule also become covered with the toxin, the body recognizes the toxin and removes it from the body, destroying the cell along with the toxin. From what I have read, CD22 is also present on other cells in the body in very small amounts, but the highest amount is on B lymphocytes, and it's especially high on some malignant lymphocytes like Ryan's. An "abundance" as his oncologist puts it.
Ryan will go to Boston once a week to have his blood tested to make sure his blood counts are high enough for another dose and to check his liver functions. Since the liver is responsible for clearing many toxins from the body they are seeing that patients occasionally have some transient liver inflammation, in which case they delay the next dose for a few days to a week. This sounds significantly less toxic than traditional chemo.
If the labs are OK, they prep the drug, which takes about 2 hours, followed by a 1 hour infusion. Then home until the next dose a week later. There will be marrow biopsies every four weeks. This will continue for 3-4 months. We start on Monday.
The results they have been seeing with this treatment are very encouraging, and Dr. Steensma is optimistic that Ryan will be in remission or at least have the tumor under control enough to proceed to stem cell transplant at the end of the treatment in 3-4 months - which would put the transplant in October or November. He will also need at least one more cycle of traditional chemo for CNS treatment before the transplant.
Sean's swabs are somewhere over the Atlantic right now as Shauna flies back to the States and should be tested next week. Meghan's and Shannon's are in the lab.
VERY encouraging news. From a selfish point of view, it's nice to have some predictability so I can plan for the rest of the family. Ryan also seems encouraged by the plan. Although he's not relishing the idea of monthly marrow biopsies (they are getting more and more painful) - he figures every 4 weeks is better than every 2 weeks. And he's relieved that it is all outpatient.
Many thanks to April Newman for getting the girls to camp. And thanks to Julie Andrew for volunteering to pick them up from Chinese camp on Monday.
Needless to say, we've pondered lots of aspects of life's adversities over the past few months. On our drive to Boston, Ryan and I had a chance to talk about this. Why me? Why us? What are we to learn from this? Faith kind of requires us to believe that there is a higher purpose in all things. Although we've all had some of the "why us" and "why Ryan" moments and moments of anger, it's surprising to find that my main emotion beyond fear is gratitude.
Gratitude for a son with such inner strength and optimism. For a daughter-in-law who has shown incredible resilience and strength. For my other children who haven't hesitated to step up and do whatever is necessary to help Ryan even at high personal cost to their families & careers.
For people at all levels of the medical system who have sacrificed their time and energy to develop knowledge, skills and compassion to serve others. Especially those "geeks" who toil away in labs and in the mysterious world of molecules!
For neighbors, friends, family and church family who are so supportive.
Even strangers like the team at the collision repair center who fast-tracked my car repairs so I could have my car in time to go to Boston.
We feel the blessings every day.
---Barb
Thursday, July 12, 2012
July 12 addendum
Got the call this morning. Ryan has an appointment tomorrow in Boston at 9 am for a day of tests to set a baseline before started the meds in the clinical trial. He'll have an echo (cardiac ultrasound) and another bone marrow biopsy. He's had both before, but they need to know his current baseline so they will know what changes, if any, are attributable to the new chemo.
And of course there will be lots of papers and documentation.
Then we'll go back on Monday for the actual chemo which will take about 4 hours and continue at weekly intervals.
Great for him since he hates being in the hospital. Yet he told me last night that if he had to be hospitalized, he wanted me to come back home to take care of everybody else. Not happening - he has no friends in Boston, and although I may need to leave him alone for a day here and there, we aren't sending him alone for very long.
Thankfully there will be minimal re-arranging for the girls, and I already have two wonderful "sisters" from my church who will be helping out tomorrow and Monday.
_--Barb
And of course there will be lots of papers and documentation.
Then we'll go back on Monday for the actual chemo which will take about 4 hours and continue at weekly intervals.
Great for him since he hates being in the hospital. Yet he told me last night that if he had to be hospitalized, he wanted me to come back home to take care of everybody else. Not happening - he has no friends in Boston, and although I may need to leave him alone for a day here and there, we aren't sending him alone for very long.
Thankfully there will be minimal re-arranging for the girls, and I already have two wonderful "sisters" from my church who will be helping out tomorrow and Monday.
_--Barb
2 months & 5 days - July 12
Ryan got a call from his oncologist in Boston last night - he will be going there for the CD-22 clinical trial. Awaiting "the call" later today telling us when to be there.
We also found out yesterday the Missy is not a match. Good new for her, since she has 4 small kids including one with a serious life-long illness (esophageal eosinophilia) who can only safely eat 4 foods and gets all his nutrition from tube feedings into his stomach. It would have been a real hardship for her to be away for the transplant.
Still waiting on the other sibling's results.
Scrambling to make arrangements for the girls for next week. Need to put a tarp over the RV (which has a leaking roof) before I leave. Bathrooms to clean. Tax prep - guess I'll take that with me.
It's funny how life's little challenges pile up. In the past week my printer stopped working (had to clean the drum to get it going), my car has been in the shop all week for repair of the damage done when it was hit at Albany Med the first week of all this, the circuits in our apartment keep breaking, my laptop charger died, etc. As Roseanna Roseannadanna said, "It's always something!".
The girls tested for TaeKwon Do yesterday. The testing is every 3 months, with a make-up session a month later for those who didn't have enough classes or weren't prepared for the regular test. Needless to say, we tested last this time. MeiLin, who usually nails it, struggled (she had woken up at 4 am with nightmares and was tired from a field trip at camp). Kaia got so flustered she couldn't do anything. In the end, MeiLin passed and Kaia didn't. She broke down sobbing. The instructor told her she'd work with her and have her practice at home and try again next week - a major deviation from their policy. The girls are getting to high belt levels where the expectations are higher and they don't do social promotions. Kaia tends to be a goof-off and sees TKD as a social club rather than a discipline. So she's got some adjusting to do. This may be one more casualty of the leukemia, but it was inevitable that Kaia would need to learn to apply herself and not always get by on her fun personality. But it still hurts.
Off to do laundry, call in favors for caring for the girls, cover the leaky RV roof, buy some milk and pack my bags for Boston.
Please continue to pray for Ryan and for discernment and inspiration for his doctors. Although life goes on around us, we're all dealing with an underlying quiet desperation.
---Barb
We also found out yesterday the Missy is not a match. Good new for her, since she has 4 small kids including one with a serious life-long illness (esophageal eosinophilia) who can only safely eat 4 foods and gets all his nutrition from tube feedings into his stomach. It would have been a real hardship for her to be away for the transplant.
Still waiting on the other sibling's results.
Scrambling to make arrangements for the girls for next week. Need to put a tarp over the RV (which has a leaking roof) before I leave. Bathrooms to clean. Tax prep - guess I'll take that with me.
It's funny how life's little challenges pile up. In the past week my printer stopped working (had to clean the drum to get it going), my car has been in the shop all week for repair of the damage done when it was hit at Albany Med the first week of all this, the circuits in our apartment keep breaking, my laptop charger died, etc. As Roseanna Roseannadanna said, "It's always something!".
The girls tested for TaeKwon Do yesterday. The testing is every 3 months, with a make-up session a month later for those who didn't have enough classes or weren't prepared for the regular test. Needless to say, we tested last this time. MeiLin, who usually nails it, struggled (she had woken up at 4 am with nightmares and was tired from a field trip at camp). Kaia got so flustered she couldn't do anything. In the end, MeiLin passed and Kaia didn't. She broke down sobbing. The instructor told her she'd work with her and have her practice at home and try again next week - a major deviation from their policy. The girls are getting to high belt levels where the expectations are higher and they don't do social promotions. Kaia tends to be a goof-off and sees TKD as a social club rather than a discipline. So she's got some adjusting to do. This may be one more casualty of the leukemia, but it was inevitable that Kaia would need to learn to apply herself and not always get by on her fun personality. But it still hurts.
Off to do laundry, call in favors for caring for the girls, cover the leaky RV roof, buy some milk and pack my bags for Boston.
Please continue to pray for Ryan and for discernment and inspiration for his doctors. Although life goes on around us, we're all dealing with an underlying quiet desperation.
---Barb
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