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
Tuesday, July 10, 2012
2 Months & 3 Days - July 10th
Dr. Zackon called today to say that he was conferring with the oncologist and transplant doctor in Boston. There is a "clinical trial" (a research study in which subjects are given unproven meds which they believe may prove to be effective) that may help Ryan. In this case, the trial is using "targeted therapy" of antibodies against CD22 - a molecule which Dr. Zackon says Ryan's cells have "in abundance".
For those who are interested, there was a cover story in Sunday's New York Times about a researcher who had a relapse of his ALL and his colleagues were able to identify a characteristic specific to his tumor which resulted in successful similar targeted therapy (but with a drug whose side-effects, etc, were well known).
The CD22 study has limited capacity for patients, so we don't know for sure if Ryan will get in. My understanding (for what it's worth - this is obviously a complicated disease to treat!!) is that the original plan with ALL is to give blasts of chemo, then allow the body and blood counts to recover and give the next blast about 3 weeks later. On this plan, Ryan is due for more chemo this week. They are waiting a few days to see if he is eligible for the Boston study. If not, we'll proceed with standard chemo which is keeping the tumor in check but not getting rid of it. Then in a month or so after he has recovered from this blast, he may be able to go on the CD22 antibody trial.
I like that they have been able to identify a specific characteristic of his tumor cells which may respond to targeted therapy. The down side is we don't know how much is known about this drug (the antibody) and its correct dosage or side effects. But what choice do we have? We're going to go for it and hope it provides the miracle we've all been praying for.
We're waiting for the call to tell us whether we will be going into Albany Med for the intensive therapy designed to give enhanced CNS (central nervous system) coverage with high dose methotrexate and some other meds that necessitate Ryan being monitored closely, or off to Boston for the clinical trial and whatever testing and monitoring is necessary in the trial. Doing the laundry, making sure there's milk in the fridge, and deciding who I will need to call for help with the girls each way.
Ryan is not thrilled with the prospect of being back in the hospital - even if it's only for a few days. Can't say I blame him. Even without being pumped full of chemicals and having frequent blood tests and painful biopsies, hospitals aren't fun places to be. Much better nowadays with technology to keep in touch and entertain. But hospitals are hospitals.
On the home front, I'm scrambling to get my share of the Youth Conference (a 3 day gathering of about 200 LDS teens from this half of New York schedule for July 26-28) preparations done so that things will go smoothly and others can step in if I need to be in Boston. A special THANKS to Sam Andrew for volunteering to run the talent show at youth conference - that's a huge burden off my mind!!!
The girls have Chinese Camp next week from 9 - 12 Monday thru Friday at Ballston Lake Elementary School. If I have to go to Boston, I'll be asking for favors from my church friends who live out that direction to get the girls to and from. MeiLin has taken 2 twelve week on-line courses as part of this program and at the end of the summer will have the equivalent of 1 year of high school language study in Chinese. Kaia likes the calligraphy and the food and the Tai Chi, but isn't terribly interested in the language!
Off to bed with my head swimming..............
---Barb
PS to Sean - after clicking on "New Post", if you click on "compose" a tool bar comes up and paragraphs (you know - where you use the "ENTER" key) survive to the preview and the posting steps (I hope...)!!!
For those who are interested, there was a cover story in Sunday's New York Times about a researcher who had a relapse of his ALL and his colleagues were able to identify a characteristic specific to his tumor which resulted in successful similar targeted therapy (but with a drug whose side-effects, etc, were well known).
The CD22 study has limited capacity for patients, so we don't know for sure if Ryan will get in. My understanding (for what it's worth - this is obviously a complicated disease to treat!!) is that the original plan with ALL is to give blasts of chemo, then allow the body and blood counts to recover and give the next blast about 3 weeks later. On this plan, Ryan is due for more chemo this week. They are waiting a few days to see if he is eligible for the Boston study. If not, we'll proceed with standard chemo which is keeping the tumor in check but not getting rid of it. Then in a month or so after he has recovered from this blast, he may be able to go on the CD22 antibody trial.
I like that they have been able to identify a specific characteristic of his tumor cells which may respond to targeted therapy. The down side is we don't know how much is known about this drug (the antibody) and its correct dosage or side effects. But what choice do we have? We're going to go for it and hope it provides the miracle we've all been praying for.
We're waiting for the call to tell us whether we will be going into Albany Med for the intensive therapy designed to give enhanced CNS (central nervous system) coverage with high dose methotrexate and some other meds that necessitate Ryan being monitored closely, or off to Boston for the clinical trial and whatever testing and monitoring is necessary in the trial. Doing the laundry, making sure there's milk in the fridge, and deciding who I will need to call for help with the girls each way.
Ryan is not thrilled with the prospect of being back in the hospital - even if it's only for a few days. Can't say I blame him. Even without being pumped full of chemicals and having frequent blood tests and painful biopsies, hospitals aren't fun places to be. Much better nowadays with technology to keep in touch and entertain. But hospitals are hospitals.
On the home front, I'm scrambling to get my share of the Youth Conference (a 3 day gathering of about 200 LDS teens from this half of New York schedule for July 26-28) preparations done so that things will go smoothly and others can step in if I need to be in Boston. A special THANKS to Sam Andrew for volunteering to run the talent show at youth conference - that's a huge burden off my mind!!!
The girls have Chinese Camp next week from 9 - 12 Monday thru Friday at Ballston Lake Elementary School. If I have to go to Boston, I'll be asking for favors from my church friends who live out that direction to get the girls to and from. MeiLin has taken 2 twelve week on-line courses as part of this program and at the end of the summer will have the equivalent of 1 year of high school language study in Chinese. Kaia likes the calligraphy and the food and the Tai Chi, but isn't terribly interested in the language!
Off to bed with my head swimming..............
---Barb
PS to Sean - after clicking on "New Post", if you click on "compose" a tool bar comes up and paragraphs (you know - where you use the "ENTER" key) survive to the preview and the posting steps (I hope...)!!!
Monday, July 9, 2012
2 months & 2 Days - July 9, 2012
Still no word on the next step.
I guess it was pretty naive to think that just a phone call or two between experts and we'd have out answer by the end of the day. Although it would be nice to know, it's comforting to know that they aren't just going to jump to something. Time means people are discussing, talking, wrestling to find the best answer.
Ryan had his pre-transplant dental exam today - Dr. Jan Fugal is a dentist in Ballston Spa, NY - a good friend and a great dentist. When he heard what Ryan needed he called this morning right off the bat and fit him in today. He checked out well except for a small cavity that should ideally be filled, but we'll need to get clearance from the experts. His counts have been so low the oncologists didn't want him to get cleaning or dental work done because of the small possibility of "seeding" mouth bacteria into his circulation. What a normal immune system handles with ease could be serious for Ryan. Which, of course, is why the transplant team needs to be sure that their patients don't have festering dental infections which could flare ater the transplant.
So we wait..........
---Barb
(PS to Sean: I tried your suggestion of pushing the "enter" button (I assume you meant the one on the right side of my keyboard that says "ENTER") between paragraphs - even tried it 5 or 6 times - and it didn't work. Any other brilliant suggestions?)
Friday, July 6, 2012
Day 59 - Thursday July 5th
Ryan had his bone marrow on Tuesday; we'll get the results tomorrow.
We had a relaxing 4th of July. Slept in, then went to play miniature golf. I never realized that Ryan was so competitive!! Sophia smoked us all - she won nearly every hole. Then go-carts. As we lined up to get into them, I noticed a sign saying that drivers would be held responsible for any damage to persons or property. I looked at Kaia and shuddered, prayed and reminded her not to be crazy. You should have seen the smile on Kaia's face as she drove!! She was being careful and did a great job. Ryan was stuck behind her and wanted to go faster, so he passed her. She claims he "bumped" her car, which is against the rules, and gave him a bad time about it all day.
I bit the bullet and took the girls into Waterford for fireworks - alone, since Tim didn't feel up to it, and Ryan can't be around throngs of people. To my surprise, the town was empty. The fireworks won't be until Saturday when Waterford celebrates it's canal history with a tugboat parade. Came home for a few sparklers and an early bedtime.
The girls are liking sharing a room. I'm considering bunk beds in Kaia's room, which would leave our office available after the girls are in bed.
I started reading the info on what to expect with the marrow transplant. Ryan needs a dental screening and he needs to do buccal swabs for HLA testing as well - the transplant nurse says they double and triple check everything.
Reading the part about preparations necessary at home for his return. There needs to be a thorough cleaning, including under beds, behind things, etc, the week before he comes home. Including cleaning of all rugs. Then everything needs to be thoroughly dusted and vacuumed weekly. Bathrooms need a deep clean weekly and a daily disinfecting.
The gig is up. I'll have to finally overcome my clutter habits. MeiLin is skipping camp today and we are going to tackle some of it. I still have to do my 2011 taxes (misplaced papers....).
And I'll need to teach the girls to keep things picked up as well. I need to borrow Jen Dinkel's dog Cherokee again - he likes socks, and the girls learned not to leave them around the house when he was with us!
I'm learning to live day to day. Challenging for a "control freak". Tomorrow we will find out what the next step will be.
---Barb
Day 60 - July 6, 2012
I don't feel much like blogging tonight. I'm reminding myself that the purpose of this was to keep loved ones informed, to be a bit therapeutic for me, and to maybe help out someone in the same situation someday who may benefit from what I post here.
Ryan saw his doctor today. His counts are higher - normal platelets, RBCs better than they've been since we started all this, WBC 4700 (unable to see the differential or kinds of cells present).
He got a call from Dr. Zackon late today after the bone marrow results were out. His leukemia is refractory to the chemo he is receiving - meaning that the cancer cells are still going strong. His marrow was 51% lmphoblasts - worse than the 29% after his first 30 days of chemo.
The oncologists here will be conferring with the oncologists at Dana Farber to get their input, but they will need to make significant changes in the protocol next week. So we wait.
The girls were disappointed on July 4th when there was no fireworks in town - and I promised them that Friday night we'd build a campfire and make s'mores and use the sparklers when it got dark. So I was committed.
It was a lovely eveing. Sophia hooked up her iPhone to MeiLin's speakers and she & Ryan danced to Beach Boys and some other music. The girls and neighbor kids flamed some marshmallows and sparklers, I rocked in the hammock, and Tim watched the fireflies in the woods.
---Barb
(PS - for some reason even though I'm writing with paragraphs, this all runs together in the blog - sorry!! Does anybody know how to fix that?)
Sunday, July 1, 2012
Day 54 - Saturday, June 30
Ok - Whew!! The technology is smarter than me....no surprise......
Here is the post from yesterday:
A busy few days - more info, less progress.
The girls have been taking advantage of my distraction by not doing their piano, flute, etc, without me hassling them to death, and with outright disobedience in increasing brazeness. So today they pushed a little farther, and we are now in boot camp mode. I understand that they are also upset with what is happening, but I've got to draw the line on sass and defiance. Mommie Dearest made an appearance today.......... Trying to find the right balance between understanding and discipline.
So...........Ryan and I drove to Boston on Thursday. Stopped at the Norman Rockwell Museum on the way, and still got to Dana Farber an hour and a half early. Or so we thought. It turns out I read the e-mail wrong and we had missed our appointment on TUESDAY at 4 pm. Oops. I was surprised nobody called, but I'm beginning to realize that plans are made to be changed in this game. I suspect that lots of out-patients who have appointments end up missing them for transfusions (in our case - we would have missed Tuesday for a transfusion even if I'd had the date right), admissions, or changes in chemo.
They graciously re-scheduled us for Friday morning at 8:30. We looked at our options of driving home through Boston rush hour traffic only to get up in the wee hours for a return trip, and decided to spend the night. After a relaxing supper in a wonderful Indian resaurant in Boston, we bought some tooth brushes & deoderant and checked in for an evening of reading and a good night's sleep in comfortable beds.
The Stem Cell Transplant physician was very informative. Ryan is "pretty common" in his HLA typing (we still think he's special, tho). If a sibling match is not available, they should have no trouglbe finding a match through a registry. A family match is always better than a non-family match that looks the same on paper. And a sibling of the same gender is a better match. Each sibling has a 1 in 4 chance of being a match. With 4 siblings, Ryan has a 63% chance of finding a sibling match. (He did a computer calculation - one of the probability calculations that Jeff Yeager can probably do in his sleep, but I could never reason out!!).
So the order of preference (if they match) would be:
1) Sean - his stem cells won't reject Ryan's cells because of the Y (male) chromosome
2) either Meghan or Shannon - they are less desirable than Sean because their stem cells only have X ( female) chromosomes and could recognize Ryan's cells with Y chromosomes are "foreign" and attack them
3) Missy - because she has 2 male sons, there is a small possibility that some of their blood cells may have leaked into her circulation during pregnancies, sensitizing her immune system to the Y chormosome, with a higher risk of her stem cells attacking Ryan's cells with their Y chromosomes. But she's still better than a non-genetic match.
In young adults with ALL, the benefits of a stem cell transplant significantly outweight the risks. The biggest risks of the transplant are infection - obvious - and graft versus host (GVH) reaction.
If someone receives a kdney or heart transplant, there is a risk that their immune system will reject the organ - a "host versus graft" reaction. In the case of stem cell transplantation, all of the immunity comes from the donor - or the "graft". And what it rejects is any or all parts of the "host" - Ryan. The good part is that GVH will help to rid his body of malignant lymphocytes. The bad part is that it could also reject Ryan.
Ideally, the recipient should be in remission and have had a prolonged course of chemo including CNS (central nervous system) chemo. Therein lies our current challenge. The chemo has knocked down much of the blood cell production. The platelets and total WBCs were WAY down. But of the WBCs that are still present, most are lymphocytes - the cancer cells - a reverse of the normal balace where PMNs or neutrophils outnumber the lymphocytes. The question is whether they will be able to get Ryan into remission.
I asked the transplant doctor that question point blank - what happens if we can't get him into remission? The answer is that we proceed with chemo - especially the CNS chemo - as recommended by the leukemia specialists, and they will consult with the transplant physicians and determine when we've reached maximum benefit with chemo and it is time to proceed with transplant.
I can't shake the feeling I've had from the start of this (not scientifically based - just feeling it in my bones - call it inspiration or maternal intuition), that we would be facing transplant in late summer/early fall. Ryan's bone marrow biopsy will be on Tuesday, July 3rd, and we follow up with Dr. Zackon on Friday, July 6th. Then we'll know what the next step is.
The siblings are doing their HLA testing cheek swabs and sending them in. I looked into have Sean's sent FedEx from Albanina.........but it turns out that it has to be labeled a biological specimen, and after it clears customs, it has to be cleared by the FDA which can take up to a week sometimes - and will cost $86.00. Come on - there's more "biological specimen" on every toothbrush in every suitcase that comes into the country!!!!
Luckily, Shauna will be flying back in 2 weeks to spend a month with her family in the US. So she can put it in her suitcase and bring it back to the States then FedEx it to Boston. (coincidence?)
We also met with a nurse from the transplant team who gave us a packet to read - a 3 ring binder with TONS of information. I've barely started it. Both she and the transplant physician said they weren't interested in getting a "remission" in their patients. They are going for CURE. Sounds good to me.
The tough part will be about 3-4 weeks of hospitalization in Boston for the transplant itself, then at least a month living in Boston after the transplant where we are only minutes away from the experts so they can jump on anything that comes up.
Ryan was exhausted both physically and emotionally by the time we hit the road. And he still had to get his blood work done and see Dr. Dunn in his Latham office on Friday afternoon. Long drive home.
After we got back from Boston, I took the girls to Great Escape. We had purchased tickets at a school fund-raiser months ago that expire on June 30th. I figured that the 30th would be swarming with people starting their 4th of July vacations, so I bit the bullet and went. 95 degrees. Insane, right? I kept hoping that one of the girls would do something that would require me as a responsible parent to turn around and head home. No such luck.
It turned out to be a wonderful afternoon. No crowds. A nice breeze. Getting soaked on a water ride and cooled by evaporation as I dried off. We had a wonderful time. So much so that I decided to upgrade to a season pass - hoping we can find a few occasions to sneak away and do it again before the summer ends.
Tender mercies.......
Tomorrow is the first Sunday of the month. In our church, we fast on the first Sunday of each month - focusing on praying for things we might need and for others in need (we fast for 24 hours starting after supper on Saturday and donate the equivalent of the cost of 2 meals or more to a fund used to help those in need). We invite all who are so inclined to join us in a fast and to include Ryan's need for the best possible stem cell donor and a successful transplant to your fast prayers. I know that there is only one power who can save Ryan - and all of us. I know that our Saviour Jesus Christ and our Heavenly Father do love us all, do hear and answer our prayers, and that God is still a God of miracles.
---Barb
The girls have been taking advantage of my distraction by not doing their piano, flute, etc, without me hassling them to death, and with outright disobedience in increasing brazeness. So today they pushed a little farther, and we are now in boot camp mode. I understand that they are also upset with what is happening, but I've got to draw the line on sass and defiance. Mommie Dearest made an appearance today.......... Trying to find the right balance between understanding and discipline.
So...........Ryan and I drove to Boston on Thursday. Stopped at the Norman Rockwell Museum on the way, and still got to Dana Farber an hour and a half early. Or so we thought. It turns out I read the e-mail wrong and we had missed our appointment on TUESDAY at 4 pm. Oops. I was surprised nobody called, but I'm beginning to realize that plans are made to be changed in this game. I suspect that lots of out-patients who have appointments end up missing them for transfusions (in our case - we would have missed Tuesday for a transfusion even if I'd had the date right), admissions, or changes in chemo.
They graciously re-scheduled us for Friday morning at 8:30. We looked at our options of driving home through Boston rush hour traffic only to get up in the wee hours for a return trip, and decided to spend the night. After a relaxing supper in a wonderful Indian resaurant in Boston, we bought some tooth brushes & deoderant and checked in for an evening of reading and a good night's sleep in comfortable beds.
The Stem Cell Transplant physician was very informative. Ryan is "pretty common" in his HLA typing (we still think he's special, tho). If a sibling match is not available, they should have no trouglbe finding a match through a registry. A family match is always better than a non-family match that looks the same on paper. And a sibling of the same gender is a better match. Each sibling has a 1 in 4 chance of being a match. With 4 siblings, Ryan has a 63% chance of finding a sibling match. (He did a computer calculation - one of the probability calculations that Jeff Yeager can probably do in his sleep, but I could never reason out!!).
So the order of preference (if they match) would be:
1) Sean - his stem cells won't reject Ryan's cells because of the Y (male) chromosome
2) either Meghan or Shannon - they are less desirable than Sean because their stem cells only have X ( female) chromosomes and could recognize Ryan's cells with Y chromosomes are "foreign" and attack them
3) Missy - because she has 2 male sons, there is a small possibility that some of their blood cells may have leaked into her circulation during pregnancies, sensitizing her immune system to the Y chormosome, with a higher risk of her stem cells attacking Ryan's cells with their Y chromosomes. But she's still better than a non-genetic match.
In young adults with ALL, the benefits of a stem cell transplant significantly outweight the risks. The biggest risks of the transplant are infection - obvious - and graft versus host (GVH) reaction.
If someone receives a kdney or heart transplant, there is a risk that their immune system will reject the organ - a "host versus graft" reaction. In the case of stem cell transplantation, all of the immunity comes from the donor - or the "graft". And what it rejects is any or all parts of the "host" - Ryan. The good part is that GVH will help to rid his body of malignant lymphocytes. The bad part is that it could also reject Ryan.
Ideally, the recipient should be in remission and have had a prolonged course of chemo including CNS (central nervous system) chemo. Therein lies our current challenge. The chemo has knocked down much of the blood cell production. The platelets and total WBCs were WAY down. But of the WBCs that are still present, most are lymphocytes - the cancer cells - a reverse of the normal balace where PMNs or neutrophils outnumber the lymphocytes. The question is whether they will be able to get Ryan into remission.
I asked the transplant doctor that question point blank - what happens if we can't get him into remission? The answer is that we proceed with chemo - especially the CNS chemo - as recommended by the leukemia specialists, and they will consult with the transplant physicians and determine when we've reached maximum benefit with chemo and it is time to proceed with transplant.
I can't shake the feeling I've had from the start of this (not scientifically based - just feeling it in my bones - call it inspiration or maternal intuition), that we would be facing transplant in late summer/early fall. Ryan's bone marrow biopsy will be on Tuesday, July 3rd, and we follow up with Dr. Zackon on Friday, July 6th. Then we'll know what the next step is.
The siblings are doing their HLA testing cheek swabs and sending them in. I looked into have Sean's sent FedEx from Albanina.........but it turns out that it has to be labeled a biological specimen, and after it clears customs, it has to be cleared by the FDA which can take up to a week sometimes - and will cost $86.00. Come on - there's more "biological specimen" on every toothbrush in every suitcase that comes into the country!!!!
Luckily, Shauna will be flying back in 2 weeks to spend a month with her family in the US. So she can put it in her suitcase and bring it back to the States then FedEx it to Boston. (coincidence?)
We also met with a nurse from the transplant team who gave us a packet to read - a 3 ring binder with TONS of information. I've barely started it. Both she and the transplant physician said they weren't interested in getting a "remission" in their patients. They are going for CURE. Sounds good to me.
The tough part will be about 3-4 weeks of hospitalization in Boston for the transplant itself, then at least a month living in Boston after the transplant where we are only minutes away from the experts so they can jump on anything that comes up.
Ryan was exhausted both physically and emotionally by the time we hit the road. And he still had to get his blood work done and see Dr. Dunn in his Latham office on Friday afternoon. Long drive home.
After we got back from Boston, I took the girls to Great Escape. We had purchased tickets at a school fund-raiser months ago that expire on June 30th. I figured that the 30th would be swarming with people starting their 4th of July vacations, so I bit the bullet and went. 95 degrees. Insane, right? I kept hoping that one of the girls would do something that would require me as a responsible parent to turn around and head home. No such luck.
It turned out to be a wonderful afternoon. No crowds. A nice breeze. Getting soaked on a water ride and cooled by evaporation as I dried off. We had a wonderful time. So much so that I decided to upgrade to a season pass - hoping we can find a few occasions to sneak away and do it again before the summer ends.
Tender mercies.......
Tomorrow is the first Sunday of the month. In our church, we fast on the first Sunday of each month - focusing on praying for things we might need and for others in need (we fast for 24 hours starting after supper on Saturday and donate the equivalent of the cost of 2 meals or more to a fund used to help those in need). We invite all who are so inclined to join us in a fast and to include Ryan's need for the best possible stem cell donor and a successful transplant to your fast prayers. I know that there is only one power who can save Ryan - and all of us. I know that our Saviour Jesus Christ and our Heavenly Father do love us all, do hear and answer our prayers, and that God is still a God of miracles.
---Barb
Day 55 - Sunday, July 1st
Imagine my surprise and delight when I came to post tonight and discovered that a long, detailed post from yesterday was missing.....
I'll add those details tomorrow. For now, we're all calling it a day after a relxing weekend........
---Barb
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