August 27th - It's all coming together

Another day in Boston - last chemo of Cycle #2 - one more check mark on the path to CURE.

So much is happening now, moving toward the completion of chemo and the stem cell (marrow) transplant.

Ryan will have his Cycle #2 bone marrow biopsy next week, then 4 more weeks to complete Cycle #3, then CNS (intrathecal chemo via spinal taps), then transplant.

We meet with the transplant physician - Dr. Corey Cutler - on Friday, September 7th. 

Sean has been excluded, so Meghan is our donor and a "perfect match".  She will need to come to Boston for a physical evaluation in late September or early October, then back on October 14th for the injections and harvesting of the stem cells.

The Transplant is officially scheduled for October 18th, with Ryan being admitted on the 12th for prep - including radiation to all his marrow over several days. 

While we are so happy to have received the blessings that have put him into remission, there is serious risk in the transplant process:  he will have ZERO immunity for quite a while.  We've read the packet we were given outlining many of the details of what to expect. 

We'll need to remain in Boston for 30 day days after discharge in a designated place that meets the standards for cleanliness established by Dana Farber.  Then almost no contact with people outside the family for months.

Vigorous house cleaning - I've already arranged to have the ducting cleaned, the well water tested and am doing the deep cleaning that's long overdue!!

No eating out  for at least 100 days.  Special dietary care to minimize risk of infection, fixing all our food at home.  No fresh veggies, only thick-skinned fruits (citrus and some melons), no deli meat, no bakery bread, no uncooked herbs, etc.  So taking some tips from the blog from the girl in Glens Falls, we'll be "foodies" and have some fun trying new things that meet the criteria. 

It's reassuring to see all those who've had stem cell transplants in the waiting room - they're the ones wearing masks and gloves, which Ryan will have to do whenever he's outside the house.  There are lots of them.  While some look quite fragile, we've got Ryan's age on our side, and the reassurance that other people have gone down this road before us and are coming out the other end successfully.

Ryan will be starting a couple of BYU classes this fall - Spanish literature and World history.  The online courses give him 14 months to complete.  So he'll have something to occupy his mind and his time, but that he can set aside on days when it's too much.  Then 3 or 4 courses in January, and he will have only lost a little ground in his education.  Plus, by taking the on-line classes, his loans won't come due. 

Meanwhile, life goes on.  The girls are preparing for school.  I will be in Boston on their first day for Ryans' marrow biopsy, which makes me sad.  I've never been particularly emotional about the first day of school, but I think the kids need a little extra emotional support when they return home from that day of stepping bravely into a new phase.  I also think it's important to establish those daily routines that get lunch boxes unpacked before they become biology experiments, getting important papers to mom, homework done, etc.  And - let's face it - this is not Tim's forte!!! 

We've established that Tim will be head cook while I'm gone (he gets home earlier than Sophia, he's a good cook, and he can't complain about the food if he cooks it!!), while Sophia can be the chauffeur, getting the girls to dance, TaeKwonDo and church activities.  And I'll still be the task master by phone, ensuring that homework gets done and giving chore assignments.

It looks like after the transplant I'll stay in Boston Monday through Thursday and Sophia will go on Friday evening after work through Sunday.  We're looking into the MegaBus for transportation, since parking is really pricey there. 

We celebrated Kaia's 10th birthday on Sunday.  She's really growing up.  She chose a remote control helicopter for her birthday present.  Tim and I were a little worried that it's survival was probably more easily counted in hours than days.  So we jumped at RadioShack's offer of replacement for any breakage for 12 months for just $7.  Unfortunately, the warranty doesn't cover retrieving it from the second story roof where it landed Sunday evening - 24 hours after purchase.  And an opportunity to discuss the risks of accepting dares from others......

I'm a little worried about Kaia emotionally - aside from the helicopter.  Her "tick" or stuttering is much worse than it's ever been.  Part of it may be that my expectations have been high this summer, but she seems delighted to be included in cooking and often delights in her newly-cleaned room.  I think it's more the insecurity or stress of having Ryan sick, not to mention adjusting to having two more people in the house and another adult telling her what to do.  In spite of her tough exterior, she's always been emotionally fragile.  It's a real challenge to meet everyone's emotional needs.

MeiLin is looking forward to steeping up to middle school, but a little worried about the changes and seems less confident in herself.  I think she'll be fine once she starts and gets the hang of things.  But she's a worrier. 

As you can tell by the time signature on this, it's another insomnia night!!  But it just started pouring rain - I love storms and rain, so I ought to be able to sleep well.  Hoping the rain will wash the helicopter off the roof.  I'm sure it will be ruined, but at least we'll have something to take in for our $7 replacement contract!!!

Thanks again for all the prayers, love and support.  I'd like to express our love to all of you.  We pray that you may all be uplifted as you deal with whatever life has sent you.
---Barb

Note from Ryan: Thank you all.

I just thought i'd get on the blog for once to thank everyone for everything.  All the prayers, all the fasts, all the time spent.  I just got Matthew Ficker's package and i'm overfilled with joy.  Special shoutout to everyone from psych 301: you made me cry harder than Ross Flom would hah!  You've all reminded me why I love BYU so much, and I can't wait to be well enough to start attending again. 

Sophia and I are doing great, I feel healthier now than I have in months, and we're hitting the bone-marrow transplant ground running.  It's so awesome to think about all the people behind us, we're definitely an army moving forward. 

I want to give you all my love and thanks.  Please keep supporting us and keep us in your prayers, the hardest part is about to come up in October.

Thank you Matt and Ross, and everyone from Stats.  Your kids can draw especially well!

Love

Ryan

August 13: REMISSION!!!!!!!

Ryan is officially in remission!!!!

How exciting is that!!! We got the preliminary results on Wednesday - the 2% number - and the final, more detailed bone marrow results confirm it.  We saw Dr. Steensma today in Boston, and he was as excited as we are.  Every single patient he has treated with the CD22 antibody has gone into remission!!

So far, we are not aware of any long-term side effects or permanent damage potential.  Of course, that's why they do these studies.

Part of me wants to shout from the rooftops to everyone who has ALL:  Go to Dana Farber NOW!!!!  Of course, they can't accommodate everyone, and for now - since it's still experimental - it is only being used when "standard" therapy fails.  But the standard therapy has all kinds of toxicities - heart damage, serious immunocompromise (Even more than with the cancer itself), neuropathy, sterility, you name it.  We met a man at Dana Farber today who has a rare type of leukemia and was treated successfully with arsenic.  I'm glad it worked for him.  Yet slightly aghast at the things that need to be used to kill cancers.

Won't if be great if someday soon they can look at the cells, identify those with high levels of DC22 and go straight to the CD22 antibody?  And find markers on other tumors that can be targeted?  It takes a long time for new drugs to come to market, and rightfully so.  I can name multiple "miracle" drugs that looked great in clinical trials, but after a year or two on the market and use in thousands more patients, serious problems were identified.  I never wanted to be the first to prescribe new medicines to my patients unless well known meds failed - for precisely that reason. 

Yet now, with my son's life on the line, I'm desperately grabbing for this drug and almost giddy about it's potential.  All the future "what if's" pale since (as Dr. Steensma pointed out today) without this drug, there were very few options to save his life.  So we'll deal with whatever complications may come someday in exchange for having a someday!

I'm again reminded that lots of scientists labored extensively to discover the minutia that makes this possible.  I firmly believe that Heavenly Father guides many of them.  I'm praying now not only that Ryan will continue to benefit from this miracle drug, but that scientists will be inspired and given gifts beyond their own capacity to be able to help many others.

Thanks to Jen Dinkel for taking the girls today - they had a great time.

Oh - and guess what:  after Ryan got the news on Wednesday, he started playing his guitar again and is looking into on-line classes from BYU.  He's starting to live as though he's going to live!!

Love to all.  Thanks for every prayer and fast that led to this miracle!!
---Barb

August 8 - Ryan's a 2%'er!!!!!

For those who were worried about my lack of postings, I've been at my brother's cabin in Minnesota - no wifi.  But peace, quiet, loving family, sunlight dancing off the lake, a sunburn and singing loons.  The week ended too quickly!

I was musing as I flew back from Minnesota yesterday that it was had been 3 months since Ryan's diagnosis.....

He and Sophia went to Boston on Monday for his weekly check-up.  Week 4 (day 22) of Cycle 1 of CD22 antibody.  No chemo this time - just labs and a bone marrow biopsy.  He called me with the CBC results on Monday:  Hemoglobin 12 - Normal at last!!!  Platelets 168,000 - also normal!  WBC 2500 with 1490 neutrophils.  Oh-oh, I thought to myself.  The lymphocytes are up to 40%.  His neutrophils haven't increased much at all.......

I busied myself with a puzzle at the cabin, packing up to leave, a good book on the plane.  When I finally went to bed around 2 am I couldn't sleep.  Everything was looking so good.  And everyone else on the clinical trial had "responded".  Ryan had responded, too - really well for the first two weeks, but now the lymphocytes were increasing again.......... 

Our landlord is going to sell the duplex and called yesterday to say that he would be bringing by a real estate agent at 3 pm today to see the property.  I've never been accused of being the best housekeeper, and with my life lately the place was pretty ugly when I left for Minnesota.  So I got up today and the girls helped me attack the house - another diversion from Thinking....

My phone rang around noon, and Sarah, the Physician Assistant from Dana Farber, asked for Ryan.  I'm sweating.  Then Ryan says "Score!!!" and gets a huge grin on his face.  "2% blasts, huh?  That's great."

Now I'm dancing down the hall with wobbly knees and saying prayers of thanks. 

At the time of his diagnosis 3 months ago, he had 78 % blasts - lymphoblasts - the cancer cells.  Normal is less than 5 % - and that's the level at which patients are considered to be in "remission".  At the end of his 30 day "induction" therapy - being bombarded with almost every drug in the book, he was down to a disappointing 23%.  After the 5 more days of chemo in July it was back up high enough that Dr. Zachon deemed him refractory to the chemo, contacted the Dana Farber team and recommended the clinical trial.  The marrow biopsy that was done just before initiation of the CD22 antibody showed he was back up to 74% blasts. 

Now after 3 weekly treatments with an experimental drug, his results are incredibly good - better than I could have hoped for.  And without significant impact on his other blood cells - no transfusions, no frequent blood tests.

This is truly a miracle!!!  The odds are so against him being in this place at this time with this treatment available and an unexpected opening in the clinical trial - the list goes on and on.  God is truly still a God of miracles.  We feel SO blessed.

The current plan is for two more 4 week "cycles" of the CD22 antibody, then stem cell transplant.  That puts the transplant in mid-October or so.

I think I'll sleep soundly tonight.

Thanks for all the prayers and support.
---Barb

July 30th - Day 15 of CD22 Protocol

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

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

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