Day 25 - Thursday, May 31st

After being on pins & needles wondering what the marrow results would be and what lies ahead.....

We got a chance to talk to Ryan's oncologist today.  It seems that the marrow biopsy this week has no bearing on management (one would ask, why do it?, and I guess doctors are debating it also).  He is on a strict protocol of chemo, and all of the data is used to determine effectiveness of this protocol;  when it was designed they included the Day 18 marrow biopsy ?perhaps to see if it was in any way predictive of outcomes.  The biopsy on Day 30 is the one that will determine which "consolidation" regimen he receives.

 

He will get Vincristine on Day 25 (Sunday), and then can go home on oral steroids and have his next marrow biopsy as an outpatient.

 

Even if that marrow shows no cancer cells, the assumption is that there are still leukemic cells somewhere in his body.  Then he will have multiple courses of various agents - some in-patient and some out-patient over the next 4-6 months.  Then they will most likely proceed with marrow transplant. 

 

If at any point he fails, marrow transplant may be considered earlier with as little as 2 weeks notice.  I'm not sure I understand the logic of this approach, but perhaps the marrow transplants are more successful if more tumor is eradicated first.  In any case, that's the general scenario.

 

The metaphor would be that they've done a major bombardment of the enemy, but they still plan to send in the SEALs and Green Berets to finish the job, mop up and wipe out any pockets of resistance...........

 

I think we're all worn out and emotionally spent at this point.  The daily trips to & from Albany are wearing both Sophia and I out.  Yet we want to be with Ryan.  It will be better when he's home. 

 

From Ryan's viewpoint, it will be hard to be at "home" when it isn't really his home, and he can't go do whatever he'd like.  It's like being out on parole with and ankle bracelet. Sophia and I went shopping today so she can make their room "theirs".  It looks awesome.  Little by little, Ryan will be able to figure out how to spend his time with some sense of productivity and satisfaction.  It's got to be hard to go from a hectic missionary schedule and a busy student schedule to having to just stay at home.  And there's the complete uncertainty about what the next few months and years hold. 

 

Although we know the God has a plan for him, waiting for the unveiling is agonizing.

 

One day at a time.......

---Barb

 

Day 24 - Wednesday, May 30th

Yesterday Ryan had his bone marrow biopsy, and a spinal tap (no cancer cells in the CSF!!!) with intrathecal chemo.  Now we wait.

For me this is the hard part - and the reality is hard to push away at this point.  Tomorrow we will find out if the chemo had eradicated the leukemia cells from his marrow.  And then we'll find out what the next step will be.  I'm struggling to keep positive right now.  The emotional and mental fatigues are starting to set in.

The control freak in me needs to know what the decision tree ahead is.  The doctors have been very vague - understandably, since they also won't know what decision to make until they get the result.  And I'm sure they are reluctant to share the algorythm since patients in general only hear part of what you say.  And whichever part they (now WE) hear, if a different course needs to be followed, they feel misled and the physicians have to spend an inordinate amount of time defending their current course of management and reassuring.

But the huge void is sucking the life out of me.  I know it will be easier tomorrow once we have answers, but it's a long 24 hours that lies ahead.

We took in the red beans and rice (I bought the wrong sausage, the beans weren't soft enough and it wasn't up to par - reflective of everything in my life right now....) and had a family meal in the visitors lounge yesterday.  But none of us ate very much except Ryan who ate about 4 plates.  I guess steroids can make you hungry enough to eat almost anything!!

The silence was deafening as we all sat around without much to day.  Thanks heavens for MeiLin and Kaia who always keep things lively!!

Sister Marilyn Tarantino brought a meal of Chicken Parm to the house, which we all eagerly devoured after we returned from TaeKwonDo.  It was wonderful!  And a delicious blueberry pie from Arla Wilding topped it off. 

Tonight a friend from Tim's work - Holly - is bringing supper.  I'm getting spoiled - I may just forget how to cook altogether!

Sophia is getting settled into their new "home" - a single bedroom at our place.  And I'm tackling the long-procrastinated job of de-cluttering.  Therapeutic. 

Everything is up in the air - which summer camps will the girls go to?  Which week should I send them out to Arizona to be with Missy?  Should I cancel our planned trip to spend a week at my brother's lake cottage in Minnesota?  God is trying to teach me patience........

Please continue to pray for Ryan and those caring for him.  That the pathologists will be guided as they read the marrow, that the oncologists will know what course to take next, that we will all have the strength to handle whatever lies ahead.
---Barb

Day 22 - Memorial Day

Chemo Protocol Day 19.  Tomorrow more intrathecal chemo (methotrexate) and a bone marrow biopsy.  His platelets are up to 59,000 - so he won't need a platelet transfusion before the procedures.  After that, it looks like the only thing left on his protocol is more daily steroids and one more dose of vincristine next Sunday.  Today the doctors discussed the possibility that Ryan may go home soon after the last vincristine once they know his numbers are recovering.  And, of course, depending on what the marrow biopsy shows.
At some point he'll be going to Dana Farber Canter Center in Boston.

Good thing we're nearing the end of this stint.  In spite of Ryan's positive attitude and all the wonderful friends visiting, I think he's had enough of being cooped up in a hospital room.  And yet we all know there is more to come.

Sophia is exhausted from her trip to Utah.  Even though she had lots of help and they got everything done in record time, I think it was mentally and emotionally exhausting.  She didn't sleep well in the hospital last night, and when she came home today she collapsed into bed and was sound asleep in seconds. 

I finally got all of MeiLin's things out of the room Sophia and Ryan will be taking over, and got lots of things situated in her new "room" (our downstairs office) so it's more hers.  We got rid of 3 laundry baskets of stuffed animals today.  I took them to the stake picnic and first I offered a grandma that her grand daughter could take her pick.  She replied that already had too many (no surprise there!).  So I came up with an alternative plan.  I just went around and told all the little kids there were free stuffed animals and they could take as many home as they wanted!  Voila!  Gone!  Don't think I endeared myself to many moms....  Better on their shelves than mine!!!

Tomorrow we'll have a Family Home Evening in the hospital lounge with Ryan and the whole family.  We're taking in some N'aulins red beans & rice - one of Ryan's favorites. 

Sophia's off to bring him some food.  He's getting pretty spoiled........... 
---Barb

Day 21 - More Vincristine

All in all a quiet day - Ryan got more IV Vincristine today.  He tolerates it pretty well. 

Tim and I and the girls joined him in his hospital room for sacrament, then had supper with the Yeagers.

Sophia's plane arrived on time in spite of bad weather scheduled for Maryland - I think they left just in time to miss the weather.  She will be spending the night in the hospital.

We've almost got MeiLin's room cleaned out.  My little pack rat parted with lots of junk yesterday. and we put all her baskets of treasures on a shelf the girls & I assembled in the garage.  Tomorrow we tackle the closet and the last few drawers, then the room will belong to Sophia & Ryan for the next 18 months or so.

Then there's the garage.  As Scarlett O'Hara would say, "I'll think about that another day....."
---Barb

Day 20 - Saturday, May 26

A quiet day for Ryan - I think he's pretty lonely without Sophia here.  Sophia and Missy & Meghan got the apartment in Provo emptied yesterday, and planned some pamper time today.  Sohpia will fly home tomorrow.  Ryan has a surprise visit from Ron Viola on his way back from his week at the temple in Boston this morning.  And his good friend Tyo and his girlfriend came in from Maryland today.

I focused on some spring cleaning today - got the girls to throw away lots of junk in their rooms and remove the books they have outgrown to give away at church tomorrow. 

Soon we will have all of MeiLin's things moved out of the room so Sophia and Ryan can have a little space of their own. 

The girls had a wonderful overnight at Sara's last night.  We all took an afternoon nap, then supper and I took the girls to ride the rides at a nearby carnival.  Off ot bed for us.

Tomorrow is Day 18 on Ryan's chemo regimen:  more multidrug chemotherapy.  Then another dose of intrathecal chemo (into the cerebrospinal fluid via a spinal tap) on Tuesday when it can be cone under fluoroscopy.

WBC today: 100.  The drugs are doing what they are supposed to do. 

We are hoping that much good will come from Ryan's illness.  There is lots of information about bone marrow transplantation and becoming a bone marrow donor at the web site of the National Bone Marrow Donor Registry @ marrow.org.

Please consider being a marrow donor.  It's pretty easy to sign up:

Go to:    marrow.org

Click the tab on the top:  "join the registry"

Click the box:  "join now"

Answer the questionnaire which screens for factors which would exclude you from being a donor.

Then it asks for your personal information and has a number of "I accept" clauses - since the testing is free, they are looking for people who would be willing to actually follow through if they are needed.

When a compatible donor is identified, they will need to see a physician for more detailed health screening to be sure it is safe for both the donor and recipient. 

It doesn't take much to save a life - a unit of blood, or a few stem cells. 

Thanks, and good night!

---Barb

Day 19 - DiBella's CheesSteak Sandwich. Yum, yum....

Daily Numbers:  WBC 300, H&H: 7.3/23, Plts: 27,000.  I wonder if should start playing the Lotto using his numbers............

Ryan's had a tough couple of nights - difficulty sleeping.  Thanks, Brad Ferland, for talking with him late into the night.  Your heart is as big as you are!!  For those who don't know Brad, he's well over 7 feet tall.  A giant of a man in more ways than one.

Sophia's in Utah packing up their life to move here.  I'm taking advantage of a day without the girls at home to accomplish things.

I took Ryan a CheeseSteak sandwich on "everything" bread from DiBella's sub shop in Latham per the Brooksby's recommendation and Ryan loved it.  Since I had just been to the dentist to get my broken tooth fixed, I abstained (but I know where the shop is for future reference!). 

Dr. Jan Fugal - a friend who's dentist in Ballston Lake, NY, expressed concerns about the effects chemo can have on teeth.  He came by the hospital after-hours yesterday and took impressions of Ryan's teeth and made trays for Ryan to use to get Fluoride and Calcium treatments to maintain his dental health.  Talk about above and beyond - Thanks, Jan!!!  (He is an excellent dentist and does routine dentistry plus beautiful cosmetic work - and more.  If you're in the area and you're looking for a dentist, he's your man.)

The Recreation Therapy department at Albany Med brought Ryan an acoustic guitar, and he's enjoying playing it.  Some of his neighbors have stopped by to tell him they enjoy hearing him play.  Obviously they didn't have to suffer through the loud-electric-guitar-in-his-bedroom stage!!  Seriously, he plays beautifully (now), and I love listening to him play.

More chemo planned for Sunday.  Hangin' in there and "kickin' butt" as Sophia would say.
---Barb

Day 18 - Thursday, May 24th

Today his head is velvety - not really bald yet, just buzzed.  Sophia was petting his head all morning.  I think he says he looks like a bald mole.  I think he looks a bit like a Marine Corps recruit (only not as scared).

WBS today - 200 !!!!  Less and less resistance to infection = less and less cancer cells.  repeating to myself.....this is a good thing, this is a good thing....

Sophia left today to go to Provo to close out their apartment, forward the mail, close the bank account, etc.  They have decided to give away all their furniture to other starving students, and either ship or store their wedding gifts.  Dawn White will be transporting the bigger things (guitars, printer, massage table, etc).  Missy and Meghan and some others will be helping her pack up and clean the apartment. 

Wanda had delays in her flight out of Albany yesterday and missed her connection in Chicago.  Eventually the airline put her up in a hotel and gave her 2 free first class tickets for future use.  She finally got to El Paso late this morning.  I am hoping all this didnät aggravate her back strain which was just beginning to improve.

Ryan still has a remarkably positive attitude, and has developed a fondness for the staff.  Having been in lots of hospitals over the years, I canät say enough for the exemplary care he is receiving.  Perhaps the most caring and positive individuals are attracted to oncology.  The resident caring for him, Dr. Kevin OReilly, even gave him a great novel to read.  Everybody likes his new caps and shades image.

Teresa was planning to take the girls to Malone for the long weekend, but when she got just south of the Adirondacks where there is cell coverage, she was called back to Malone because her mother in law was taken by ambulance to the ER and has urinary sepsis. 

Needless to say, the girls were very disappointed, but so was I.  For the past 6 months, I have been tied up with so many other things that I have completely let my house go.  And now with 2 more people living here I need to do some rearranging.  And the taxes are overdue, etc.  I was looking forward to 2 days without interruption.  So I felt pretty deflated, too.

Sara Carpenter called and volunteered to take the girls from Fri to Sat morning, and I called Jane Wood who had offered earlier this week to take them for a day and she will entertain them on Saturday.  So I will have Friday and Saturday.  Whatäs the old saying_  When God closes a door he opens a window_  )sorry about the wingdings + my keyboard is messed up + does somebody know how to fix it:_

The Saratoga Sparks Basketball Club got together and gave us a beautiful card, some petit+fours cookies, a fruit bowl and very generous gift cards for Ryan and Sophia to use at the hospitals.

I am so moved by the generosity of so many people.  That so many would reach out so generously to someone they barely know is quite touching. 

I thank all of you from the bottom of my heart.
+++Barb.............wingdings again.....time to restart this old thing...

Day 17 - Bald & Bodacious

Ryan's got a new style - clean shaven face with a buzz cut.  The beard was getting patchy yesterday and he asked for clippers.  During the night he took matters into his own hands.  He looks good, actually!  But then he still has some hair, and the smile is still beaming through.

Yet for all the joking today, it was another landmark, and I suspect it was a lonely difficult night.

Today he's sporting a cap, some cool shades, and a smile.

WBC today was 0.3 (thousand) - that's 300 white blood cells.  The physician inside me looks at a WBC of 300 and gasps.  I don't think I've ever seen a count that low.  But then that's the point, isn't it?  To wipe out his body's ability to produce cancer cells.  Of necessity the collateral damage is loss of good cells as well.  His hgb is still around 8, and the platelets are hovering around 20.  He has bruises which are most likely the result of his low fibrinogen.  He got more cryoprecipitate today to replace the fibrinogen.

The good news is that the nausea hasn't reared it's ugly head this week.  He still eating a lot, but trying to cut back a little bit and make healthier choices.  The steroids tend to cause hunger and weight gain.  Whereas over the weekend he was down 10 lbs from admission, now he's up 5 pounds from admission.  Although he's been eating a lot, he hasn't eaten 15 pounds worth for a young man's metabolism (maybe for mine....).  So he's either got some fluid retention or steroid effect or both.

When he was little, he was diagnosed with ADD and put on a medication which made him lose weight - in 6 months my already skinny kid 9 year old lost 9 pounds.  He was doing so much better in school that we really wanted to keep him on the medicine.  So we fed him everything under the sun in an attempt to maintain his weight.  When he was taken off the meds, his bad habits (a result of parental force feeding) caused him to balloon up.  The boy we had called "Monkey" since he was little became our "Chunky Monkey".  Being the fat kid was hard on his self esteem.  Eventually he simply decided to lose the weight.  He cut out snacks and second helpings and the weight fell off.  When he puts his mind to something, he sticks to it.  That trait will serve him well now.

Ryan has a few hats now.  Thanks Brad for the Alabama cap (ROLL TIDE!!!!), and the Yeagers for the Cabela's cap (love their  outdoor camping supplies).

It's nice to know that some people just can't miss a chance to make a statement:  Sara (knowing Tim hates Obama and gives Ryan a bad time about having voted for him) gave Ryan a hat with the Obama 2012 re-election logo.  It will be fun to see how long it takes Tim to figure out what it is!

And then there's the moose hat - similar to what you would find on a snowsuit for a toddler.  Thanks, Uncle Larry & Aunt Judy.  Love your fashion sense!!!  We're looking for an opportunity to catch Ryan drugged and slip it on him for a photo session!!

Speaking of photo sessions, a friend is writing a childrens' book with scripture stories.  She asked Tim to be Moses, and his photo shoot was today.  During the shoot, our oldest daughter, Missy, called and I told her what we were doing.  Her response, "You mean Dad actually agreed to have his picture taken?!"

The girls are going to spend the weekend in Malone with Teresa Rabideau.  Thanks, Teresa!!  She always spoils them rotten.  So while Kaia was at dance class, MeiLin cleaned out both mouse cages to talk me into letting them go to a local carnival with rides.  We all won on that one!

Sophia is flying out to SLC tomorrow where Missy and Meghan will join her on Friday and they will close out Ryan & Sophia's apartment.  Thanks to Paula Ita for picking them all up at the airport and getting them to Provo.  Thanks to Josh Hawkins (Missy's brother-in-law) for loaning his vehicle and muscle. And Thanks to Dawn White for hauling the bigger stuff back from Utah in her car.

Wanda (Sophia's mom) flew back to El Paso today to be with her younger children at home in Chihuahua, Mexico.  We're hoping she'll come back this summer and bring them along.  Then all the kids can enjoy a New York summer together.

Our love to all of you!  We can't begin to express our gratitude for so many wonderful people in our lives.  We are truly blessed.
---Barb

  (PS - on the preview, the words "admission" and "lose weight" are highlighted, and I don't know how to undo it.  So please disregard the highlights - there is no hidden meaning except the I'm not smart enough to over-ride the compter)

Day 16 - Tuesday, May 22

I can't believe how much Ryan is eating!!  Today he wanted pizza - jalapeno, no less - from LaBella's in Halfmoon.  Along with some boneless buffalo wings.  The pizza was a 16 incher - loaded with jalapenos (I didn't fight him for a bite).  He gave a piece to a nurse who stopped by the lounge where he was eating, and proceeded to eat all but 3 pieces.  Then after we went for a walk, he picked up another piece.  I suspect it was all gone by 3 pm.  I'm waiting to see what he ordered for supper!

The beard hair started to fall out today.  So we've equipped him with a clipper to buzz it off when he's ready.  He's ready with his shades (thanks, Brian!) and a couple of hats.  Incognito.  We passed a teenage girl in the hall today who had lost all her hair.  Ryan immediately felt a kinship with her.  It's an exclusive club we can feel blessed not to belong to.

We went for a walk today - out to the parking garage where we could see out onto some green grass below without getting wet in the drizzle.  Felt the breeze, talked for a bit.  Ryan shared some of his thoughts about the future - hard to plan with everything up in the air, but he's sure this experience will lead him to something meaningful.

I didn't get the labs today.  Somehow as a physician, it doesn't seem like I've made adequate "rounds" without seeing the labs.  He has had some bruising - probably form the low platelets and fibrinogen.  So he got another bag of FFP today. 

This is Sophia's mom's last full day here.  They sent shopping to get some things Sophia needs and have some time together.  I left the hospital around 2 pm, and they came around 3 pm.  Wanda's back was a lot better today, and Ryan and Tim gave her a blessing.

As we approach the next phase of his care, I'm looking for information from the doctors about screening siblings for compatibility to find a marrow donor.  Meanwhile, I contacted our insurance company and found out that they don't cover donor screening, but once a donor is selected the insurance will cover medical bills associated with donation. 

Ryan's expenses will be covered if he is at a "Center of Excellence" that participates with the plan.  The transplant office at the insurance company will be calling me tomorrow with more details.  One of Tim's co-workers from Malone whose hubby was treated for prostate cancer at Dana Farber in Boston says that the insurance also has an allowance for housing in a hotel for a family member while he is hospitalized there.  That will be a big help.

Speaking of help - a special thanks to all of you have offered to help with meals and caring for the girls, etc.  Right now, we're doing OK since Ryan is nearby and the girls are in school and we're trying to keep them on their routine as much as possible.  When we are traveling to Boston this summer, I'll probably be calling many of you to take you up on your generous offers.

The sisters from church have been bringing us meals once a week, and several people have brought by desserts and cookies.  Tim's office is sending home tons of food as well.  And the gift cards for Ryan are greatly appreciated.  Since food is my drug of choice, by the time this is all said and done I'll need to get a new wardrobe. 

MeiLin's 5th grade concert was tonight.  Very enjoyable.  I am amazed that Mr. Yannuzzi can take fifty-six 10 year olds and in 8 months turn them into pretty good musicians! 

We are feeling the results of the fasting and prayers.  Ryan is holding his own with minimal side effects so far.  Although he feels weak, he is able to walk.  And we're all amazed that he is able to eat so much.  The positivity he has is inspiring. 

As Elder Wirthlin's mother would say, "come what may and love it" (complete article on lds.org - just put the quote in the search box).  We are learning so much about ourselves and about life.  Sometimes I feel like I could do without this education! 

---Barb

Day 15 - Monday, May 21st

Chemo Protocol Day 12 - doing quite well.  The vincristine from yesterday dropped his white count to 0.9, and the differential, or "diff" ( the breakdown of cell types expressed as a percentage) shows neutrophils (the ones that fight acute infections), "segs" (segmented neutrophils are mature neutrophils), and lymphocytes.  It didn't mention "blasts" or immature forms associated with leukemia.  That's a good thing!!

The chemo also dropped his hemoglobin (measure of RBCs) to 7.1.  So he got another unit of RBCs.  Platelets are holding firm at 20,000.

Ryan walked to Panera and got himself some lunch today.  Alarmed me since he was a bit wobbly on his feet.  But he's really hungry.  He's been talking about fried chicken for a week now, and he asked for Popeyes chicken for supper.  So we bought a bucket and we all ate together in the visitor's lounge on his ward.  Not exactly the healthiest food in the world, but at this point we just want to pack him full of calories and maintain his scrawny weight. Sophia said he was much steadier on his feet tonight.

After we left to take MeiLin to BB practice, he took Sophia and Wanda with him to the cafeteria and ate another meal!!  No nausea so far.

The walls are closing in, though.  And the only windows on his floor look out onto construction.  He still has a positive attitude about his cancer, but we've noticed the slightest little bit of grouchiness.  All of you who know what a control freak I am know I'd be going absolutely nuts in a situation like this - he has no control whatsoever over anything in his life right now and is sick of feeling helpless and dependent.  He's earned the right to be a little grouchy (just not at any of us......)!

LaBella pizza with jalapenos for lunch tomorrow.........

MeiLin's band concert is tomorrow night.  We're going to try to fit in TaeKwonDo as well.  there is testing every 3 months, and you need 20 classes to test.  We're a little behind so we need to squeeze in classes whenever we can.  There are five classes a week we can go to, but conflicts with basketball practice, dance, activity days and now Ryan's illness have us trying to catch up.

Spoke very briefly to Dr. Rauch.  He's pleased with Ryan's progress.  Said the protocol calls for another intrathecal (into the cerebrospinal fluid via spinal tap) chemo injection on Day 18 - next Sunday.  He prefers to do the procedure under fluoroscopy (real time X-ray) because of its accuracy and a higher certainty of getting it on the first attempt with Ryan's low platelets.  Because of the Memorial Day holiday, it will probably get done Day 20 instead.

Fatigue is setting in for me.  Although I'm sleeping fairly well, I'm emotionally and intellectually shot.  So I played a lot of Free Cell today and vegged out for the most part.  Tomorrow I'll try to focus on all the things that I need to do around the house.  But today I struggled to make simple decisions. 

Wanda injured her back lifting her invalid mother before she came out, and it's been hurting her terribly.  So we're giving her some meds and Sophia gave her a good massage.  Trying to break the spasm and get her feeling better before she has to fly all day to El Paso then drive 4 hours home on Wednesday.

Hanging in there..........

---Barb 

Day 14 - Sunday, May 20th

A beautiful sunny Sunday.  Friends and family throughout the world fasted and prayed for Ryan today.  And we felt it.

Sunday school today was especially poignant.  In the Book of Mormon, in the book of Mosiah, Chapter 24, verse 14 it reads: "And I will also ease the burdens which are placed upon your shoulders, that even you cannot feel them upon your backs..."  As we discussed this in class, Sophia and Wanda and I all found ourselves with tears of gratitude flowing, for we now know them to be true.

We wanted to be with Ryan when he received the Sacrament today, so we left church early for the drive to Albany.  Ryan's appetite is back after losing 10 pounds in the past 2 weeks.  He ate a lot last night, and requested a steak & cheese sandwich today.  Wanda got him one for lunch - it disappeared  within seconds!  Ryan and I went for a brief walk, and he was a bit wobbly.

Ryan asked questions about what lies ahead after completion of this 32 day course of chemo and whether he would be going to Boston for clinics visits or a hospital stay.  I really don't know the specifics of what lies ahead for him, or what criteria are involved in the decisions.  I have a general idea, but was resisting sharing what I think is the length and life-altering impact with Ryan and Sophia until either they asked or the doctors directed the next steps.

A friend shared with me a blog on caringbridge.org about a teen named Elmily Zeigler from Queensbury, NY, who was diagnosed with leukemia (don't know whether it's the same type as Ryan's or not) in December.  She went home from Boston's Dana Farber Cancer Center this week after a successful bone marrow transplant.  Her mom's entries share some of her challenges and experiences.  From what I can tell, she will need to limit her exposure to infection for the next 12 months, including avoiding gatherings of people, raw foods which may harbor bacteria, avoiding eating out. 

If Ryan's case follows a similar course, he may be facing 18 months living with us, and significant lifestyle restrictions during that time.

We don't know when marrow transplant will be considered, but all four of Ryan's biological siblings plan to be tested as soon as the physicians tells us what needs to be done. 

Today in Relief Society, Tina VanDerwerken - Glenville's RS president - encouraged everyone who is able to consider giving blood and registering with the national bone marrow registry.  There are LOTS of people out there who can benefit from our life-saving generosity at minimal inconvenience to us.  And we all know that the Lord often answers prayers through other people.  So why not through their blood and their marrow if necessary?

I will share the marrow donor registry info in this blog as soon as I am sure I have accurate info to share.

Two brethren from Albany 2nd Branch came in and blessed and administered the Sacrament.  We are so appreciative of men who live worthy of their priesthood and are willing to take time to serve.

Wanda and I left around 3:00 so Sophia and Ryan could have some time to themselves.  They napped a little between interruptions to get some "fresh frozen plasma" - FFP - plasma containing clotting factors, necessary because of a drop in Ryan's fibrinogen level.  Fibrinogen is a glycoprotein which is essential to the body's clotting mechanism.  I am not really sure why his levels are low - it could be from dilution (IV fluids and other blood components such as red cells have been administered), or form decreased production in the liver due to chemo, or various other causes.  Not alarming, just more of the "tweaking" necessary to fine tune things.

Today was Day 11 of the chemo protocol.  Vincristine is given on days 4, 11, 18 & 25 of the 32 day regimen.  So every Sunday will be his vincristine days.  And a few more doeses of methotrexate, and the daily steroids.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Wikipedia on Vincristine:

Mechanism

Tubulin is a structural protein that polymerizes to microtubules. The cell cytoskeleton and mitotic spindle, among other things, are made of microtubules. Vincristine binds to tubulin dimers, inhibiting assembly of microtubule structures. Disruption of the microtubules arrests mitosis in metaphase. Therefore, the vinca alkaloids affect all rapidly dividing cell types including cancer cells, but also those of intestinal epithelium and bone marrow.

Uses

Vincristine is delivered via intravenous infusion for use in various types of chemotherapy regimens. Its main uses are in non-Hodgkin's lymphoma as part of the chemotherapy regimen CHOP, Hodgkin's lymphoma as part of MOPP, COPP, BEACOPP, or the less popular Stanford V chemotherapy regimen, in acute lymphoblastic leukemia, and in treatment for nephroblastoma (Wilms tumor, a kidney tumor most common in young children). It is also used to induce remission in ALL with Dexamethasone and L-Asparaginase. Vincristine is occasionally used as an immunosuppressant, for example, in treating thrombotic thrombocytopenic purpura (TTP) or chronic idiopathic thrombocytopenic purpura (ITP). It is used in combination with prednisone to treat childhood leukemia.

Side-effects

The main side-effects of vincristine are peripheral neuropathy, hyponatremia, constipation, and hair loss.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ryan knows the nausea will start in the next day or two, so he's trying to eat now while he can.  That explains my run to Subway as they were closing at 9 pm for another steak & cheese sandwich.  He also inhaled the cookies made by Lauren Brooksby (thanks, Lauren!!!!), and the chocolate cupcake from home with Tim's famous chocolate frosting. 

Around 10 pm Ryan and Sophia and I went for a walk.  Still wobbly.  Most likely a combination of the inherent weakness that comes from lying in bed for two weeks, plus anemia, weight loss and general fatigue and weakness from the chemo.

We found the hospital chapel and spent a little time there.  Ryan picked out "Lead Kindly Light" on the piano.  Some moments on this journey are burned into my heart.  Precious moment / tender mercies.

Tomorrow:  hopefully Ryan can still enjoy some food / taking the car to the collision center for an estimate / taking Sophia to shop for bedspread, etc, to make their home for the next 18 months (in what used to be MeiLin's room) a little more theirs.

My heartfelt gratitude for the fasting, prayers, expressions of support & love, and the cookies!!

---Barb

Day 13 - Saturday, May 19th

Short entry today.  Still some nausea, well controlled with meds.  Subway for supper.

Second Vincristine tomorrow.

Glenville Ward and Malone Branch fasting tomorrow for Ryan, as well as many friends and family.

Deep gratitude to all for their generosity and sacrifice on Ryan's and our behalf.  The Lord has blessed us with incredible people in our lives.

---Barb

Day 12 - Friday, March 18th

No additional chemo today.  Lingering constant nausea, but the meds control it enough that Ryan can eat a few things.  Cereal & milk seems to do best.  Ryan noted that it's strange to want a cheeseburger, while at the same time feeling nauseated at the prospect of eating one. 

He gets quite lightheaded when he showers.  The heat of the shower dilates the blood vessels in the skin and blood pools in the leg veins when standing.  So blood is diverted away from his central circulation, decreasing the blood flow - hence the delivery of oxygen - to his brain and vital organs.  This often happens in "normal" people, but is much more pronounced in someone with significant anemia whose oxygen delivery is marginal even when the flow to organs is normal.  We'll need to get him a shower chair so he can safely sit and shower and avoid the risk of fainting and hitting his head (especially with his low platelet count......).

Sophia and Brian spent most of the day with their mom - a rare treat for all of them since they live so far apart (Wanda's in Mexico, Sophia in Utah and Brian in North Dakota). 

MeiLin did very well in her NYSSMA performance.  She got an excellent rating, but was beating herself up for not getting outstanding.  I think it's outstanding that a fifth grader even competes!!

Kaia is stilll searching for someone to spend the night with - she loves overnights, and it never seems to work out according to her plans.  So she's disappointed.  Maybe tomorrow.......

Tim was late getting back into town, so we're going to call it a day and try to get some rest now.

Brian flies out at  am to return to his job in ND.  We will miss him.  He has helped us out a lot in the past 10 days.  We will miss his easy manner, sense of humor, and genuine goodness.  And Darby will miss getting to sleep in the bed with his buddy!

We're very happy with Ryan's progress so far.  But we fully realize that he has just started this trek.  We look forward to the additional strength that will come from Sunday's fast. 
---Barb

Day 11 - Thursday, March 17th

A day on the protocol with no chemo! 

Daily numbers:  WBC 1700 - no real change, but of course the doctors are seeing more details than we are - specifically what percentage of the cells are abnormal, and what percentage are "new".  In all of us the marrow is constantly making new cells while the older cells are dying off.  The number of new cells tells them how successfully they are suppressing his marrow. 

And since his total WBC count is quite low, we can expect that the "easy" cells to eliminate are gone, and that changes in the counts at this point will be incremental rather than dramatic.

The tightrope walk of chemo - kill off the bad cells while you try to keep enough good cells to survive.  In Ryan's case this means nearly wiping out his marrow to eradicate the leukemia cells will seriously impair his body's ability to produce not only normal white cells, but also oxygen carrying red cells and platelets which are essential to the body's protective blood clotting mechanisms.  Thankful to live in a time and place where safe transfusions are available.

The nausea is still a problem, but seems to be fairly well controlled with meds.  And heartburn comes and goes but is relieved by antacids.

Since he had no chemo today, Ryan thought he might sneak out to Panera just across the street from the hospital for lunch with us and some friends from Glens Falls.  His nausea was under control and some Panera soup sounded good.  He showered and then felt pretty exhausted.  We briefly entertained taking him in a wheelchair with a mask, but his nurse pointed out that with the low counts it wasn't advisable to take him out.

So we got Panera take-out and Ryan enjoyed 2 bowls of soup and lots of baguette. 

His spirits are good - thoroughly enjoyed his visit from Brad Ferland yesterday and from his Glens Falls friends today (sorry - I missed them and I don't have their names).  They brought a Dali poster which brightens up the room - OK: I'm sounding pretty cheesy to Ryan and his artist friends.  It does a lot more than "brighten the room".  Dali is one of Ryan's favorite artists, and it's fun to study the poster and appreciate Dali's quirky sense of humor.

It's great having Wanda (Sophia's mom) here.  She's in withdrawal having no one to care for after having full responsibility for her chronically ill mother for the past year, and being away from her 3 younger kids.  I'm so glad she can be here for Sophia.  Sometimes you just need your mom!!

MeiLin was uncharacteristically irritable after school today.  She steadfastly denied that she was concerned about Ryan.  But then broke down crying, saying that she can't even go see him (oncology ward policies discourage elementary age visitors because of the higher risk of contagious illness).  So we went home and took a nap before her basketball practice, then I took the girls to the hospital.  They were both really glad to see Ryan and enjoyed a short visit before I made them leave since it was late and they've got school tomorrow.  I made them blow kisses goodbye from across the room.  Then half way home, MeiLin said, "I didn't even get to give him a real kiss." 

Tim's out of town tonight and will be back tomorrow.  He's trying to study for his exam for one of the classes he needs to take for his board certification as a physician executive later this year.  He took the course the last weekend of April, but it's been too hectic for him to study for the exam at home.  Hopefully he'll be able to take it this weekend.

MeiLin has NYSSMA tomorrow.  She will play her flute (Bach's Menuet, "How Gentle is the rain....") for a judge in the music competition.  It's her first year playing and she's doing great, but a little intimidated at the prospect of playing and being critiqued..........

I just about fell asleep at the wheel today, so I've got to make getting some rest a priority. Off to bed with a grateful heart.  I've thought about keeping a "gratitude journal" for years but have never gotten around to it.  I guess this blog is becoming my gratitude journal.

---Barb

Day 10, Wednesday, May 16th

More chemo today - asparginase. 

According to Wikipedia:  "The rationale behind asparaginase is that it takes advantage of the fact that ALL leukemic cells are unable to synthesize the non-essential amino acid asparagine, whereas normal cells are able to make their own asparagine; thus leukemic cells require high amount of asparagine. These leukemic cells depend on circulating asparagine. Asparaginase, however, catalyzes the conversion of L-asparagine to aspartic acid and ammonia. This deprives the leukemic cell of circulating asparagine."

Interestingly, the asparginase is produced by genetic modification to microbes - in this case, E coli.  Ryan got 5 shots in his thighs, of "E. coli" - actually the shots were of the enzyme asparginase, which was produced by E. Coli.

The Daily Numbers:  WBC 1500.  H&H (hemoglobin and hematocrit - measures of RBCs - normally around 12 & 36) is holding at 8 & 24.  Platelets "stable" at 21,000.  And no "bumps" in K (potassium) or Phosphate.  So far so good.

Part of me wants to jump for joy - we're killing off all those bad cells.  But with that comes susceptibility to infection.  I was worried about infections we might expose him to.  A valid concern, but the resident pointed out that the bigger risk are Ryan's own normal microbes - the normal bacteria and organisms like yeast that live in controlled levels on his skin and in his mouth and GI tract, but in the absence of normal protective immunity can cause serious infections. 

Ryan is actually doing quite well with all this.  Very queasy with odors - but his nausea has been able to be controlled with meds and he has been able to eat some crackers and some cereal & milk.

Sophia's mom flew in tonight - she's terrified of flying, but overcame her fears to be with Sophia.  Everybody slept at home since Ryan felt he needed some alone time and wants to start drawing.  Art has always been his passion and his release.  I took his drawing table into the hospital, but it doesn't collapse easily, and takes up a lot of room.  I'll have to work on a smaller collapsible table, or maybe an easel.

We've been at this for 10 days now, and it's starting to feel "normal" - whatever that is.  Daily runs to the hospital.  Trying to figure out how to help Ryan, when in reality all any of us can do is stand idly by feeling useless.  But I remind myself that mental state is 90% of the battle here, and that's where we can help Ryan.  So I focus on doing what I can to help Ryan, doing laundry, getting supper on the table, getting the girls to do their homework, piano, flute, etc.  Chauffeuring the girls to dance, Tae Kwon Do and basketball practice.  Mindless routines bring a sort of comfort - deluding my heart into thinking there is something left in our lives resembling normal.

And praying.  It's amazing how close the Savior feels at times like this.  I can't begin to express my gratitude for His comfort.  Little blessings - tender mercies -  as so sweet.

The day of  fasting and prayer for Ryan will be held on Sunday, May 20th.  We invite all to join us at whatever level suits your personal spirituality.  We firmly believe that God answers prayers and that, ultimately, only He can cure Ryan. 

Additionally, we are mindful of His hand in guiding the wonderful people whose sacrifice and skills will give Ryan the chance to conquer this.  As a physician, I often have felt cynical and disappointed in myself and my colleagues - I was burned out when I left medicine.  But I can honestly say I have never been prouder of my profession.  When I think of the hours of study and sacrifice that those caring for Ryan have collectively made to serve others, I am quite humbled and immensely appreciative.

---Barb

 

Day 9 - May 15th

Today was Ryan's third day of IV chemo - "Day 6" of the month-long treatment protocol.  He's having a lot of nausea, and vomited this morning.  He got methotrexate today. 

His WBC was 2500 today - less than 1% of what it was when he came in as the resident pointed out.  His Hgb was 8 and the platelets are holding at 20,000.  So far his potassium and calcium have remained normal.
Sometimes the levels go up as the chemicals are released by dying cells.

Sophia's mom flies in tomorrow, and I think that will be a great help to her.  She's a real gem - a strong woman.  But watching someone you love so much go through all this, and knowing that it's only the beginning, is hard.  Sometimes I find myself putting up my professional emotional wall so that I don't fall apart.

Her brother, Brian, has been absolutely wonderful - staying with Ryan at night so Sophia can get some sleep at home, keeping Ryan company, runs to the cafeteria for what Ryan would enjoy (when he could eat), filling Sophia's gas tank, and the list goes on. 

Ryan asked me to bring in the clippers tomorrow so he can buzz his head.  I wonder if he'll buzz the face, too!  After finals, he's deviated a bit from the BYU grooming code.......

This is a real challenge for me.  Food is my drug of choice - for myself and pushing it on others.  And nothin' says lvin' like something from the oven.  But Ryan is too queezy to enjoy eating.  So I'll have to learn some new tricks.

The girls had a science fair and ice cream social at their school tonight.  It was good to do something that seemed normal. 

At first, the risk was his WBC being too high - now they will intentionally drop it too low as they kill off the good cells along with the bad.  So the next few weeks will be a battle to prevent side effect and infection, knowing that some of both are inevitable.  Our brief interlude of smooth sailing is probably ending.  Please continue to keep Ryan in your prayers.

Love and gratitude to all of you.

And to our Heavenly Father and Savior - our faith in them and the comfort of the Holy Ghost are sustaining us all.
------Barb

Day 8 - Monday May 14

Ryan tolerated yesterday's chemo well.  A little bit of heartburn, mild nausea - but still able to eat. 

His WBC is down to 10,000.  Hemoglobin is 7 (normal ~12).  So he got another unit of red cells, and feels a lot better.  More "ruby" today.

I've got to put in a word for blood donation here.  Some wonderful people - not knowing who they would be helping - gave blood recently.  So far Ryan has had 5 or 6 units of RBCs and 2 six-packs of platelets.  And we're just getting started.  If you are healthy, not pregnant or nursing, and you can spare 30 minutes of your time, please consider regularly donating at your local blood bank.

I am so grateful to those who have given their blood for Ryan and so many others.  It truly makes a life-or-death difference, and there is no substitute for blood.

Boredom is starting to set in.  Looking at the same 4 walls all day every day gets old even when you feel good.  He has the Wii from home and a TV from the hospital's recreation department. 

Sophia went to work out at the YMCA with her visiting teachers early in the day before going to the hospital.  In the afternoon, Tim and Ryan gave her a blessing.  Brian Bateman has been with Ryan all day.   

Anticipating a more precipitous drop in Ryan's WBCs and his ability to fight infection, we're going to need to be more careful about wearing masks, etc. 

Thanks for all the prayers.  Ryan's fight is just starting.  He has a tough few weeks ahead of him.

More chemo on Tuesday...............

---Barb

Day 7 - Started the big guns today

At 11:00 today, Ryan got his first IV chemo therapy with Vincristine and Doxyrubicin - one of the "Ruby Sisters", as the oncology nurses call the family of drugs.  Appropriately, since it is bright red.  And turns the urine bright red as well!!  Good thing they warned Ryan.

Sophia went home for some much needed rest around 10:30 just before the meds were administered.

The injections went well, with virtually no immediate symptoms.  So well that Ryan put on a mask and the two of us went for a walk to the nearby park afterward.  Just a slow stroll, watching ducks and Canada geese in the pond.  It was a perfect day, and Ryan appreciated being out to enjoy it.  It made for a very precious Mother's Day.

The mega-dose steroids have worked their magic - Ryan's WBC count is down to 30,000!!  And that's before the chemo.............

So far, so good.  No nausea - Ryan ate his dried-up baked chicken hospital lunch and asked for a hamburger.  Brian and I went to the cafeteria (which has great food) for our lunch and his hamburger.  He snarfed it down.  The pre-treatment with anti-nausea meds apparently worked!!

A couple of brethren from Albany 2nd Branch brought sacrament.  Ryan selected "Come, Come, Ye Saints" which we all sang together before they administered the sacrament.  "No toil nor labor fear" had a deeper meaning today.........

I went home around 3 pm to have time with the girls and help them with their science fair entries.  MeiLin's is about Rocks & Minerals; Kaia's is about Jupiter.  Ryan helped her build Jupiter with a Styrofoam ball coated with clay while we were out of town in April. 

Sophia spent the rest of the day at home napping and resting.  Tim grilled some steaks & Anjanette Yeager sent us a wonderful fruit cream pie for Mother's Day.  Kaia also created a wonderful dessert by melting Hershey's bars mixed with a little milk and topped with marshmallows to make a smiley face.  And MeiLin gave me a vase of beautiful tissue flowers along with some fresh lilacs.  It doesn't get any better than that!

Off to bed with prayers of gratitude, and more prayers for Ryan and Sophia. 

---Barb

Day 6 - Sat, May 12: Last P-Day before chemo

I feel little foolish writing this since I didn't even see Ryan today........

Today was his last day of steroid treatment before he starts the major chemo drugs tomorrow.  As I understand it, the Medrol (steroids) sensitizes lymphocytes to the chemo and enhances the kill rate.

He was having some headaches, but enjoyed pizza and Chinese food and some company.

I spent the day at dance recital photos, basketball games and getting a dresser on craigslist to put in the office where the girls are sleeping so Sophia and Ryan can have a little space of their own.

Tim and I are pretty wiped out.  And I'm sure Ryan & Sophia and Brian are as well.  It's been a long week.  Tomorrow the real battle begins.

----Barb

Day 5 - May 11: car troubles and Tiki Masala

A slack day for Ryan - no tests (OK - a few blood tests), no transfusions (there goes my 6 pack a day theory).  Only steroid injections and permission to wear regular clothes and "leave the unit".  Of course the hospital can't give permission for him to leave the grounds in these days of insurance surveillance and liability claims.  But we can read between the lines...........

As Sophia and I were on our way to the hospital, I got a call from the school nurse that Kaia was in her office crying with a tummy ache.  I explained the situation and thought maybe she could continue the day after a little TLC from the nurse.  She also explained that there was a substitute teacher.  When Kaia got on the phone with me, she had a complete meltdown.  So we turned around and went to school and took both girls with us and "played hookie" for the day.  (For any of you NCIS fans, MeiLin had a Ziva moment and asked what the "hookie game" is.....).

On Wednesday, Ryan's car overheated coming to the hospital, so it's been sitting in the parking garage until we got time to deal with it.  Brian checked the coolant and it was OK.  So today we called AAA to tow it to a nearby garage - free with our membership and not a problem.  Except when Sophia was driving my car out of the parking garage to follow the tow truck to the repair shop, a guy drove right into the side of the car.  No major damage - just a little dent in the front passenger door and panel a little paint scrape.  We exchanged insurance info.  Then Sophia had a long-overdue cry.  It was the proverbial straw.

We went out for Indian food mid-afternoon when we figured the restaurant would be nearly empty of germ carrying guests.  Outside the restaurant Ryan ran into a friend from Institute from before his mission and we invited him to join us for Indian food.  So Ryan got his tiki masala, and the rest of us ate from the buffet.

Then Ryan and Sophia and Brian went back to the hospital for naps while the girls and I went over to the nearby NY State Museum for info on rocks for MeiLin's science project.  Ryan's car was ready by the time we were done.  It only needed a thermostat.  I was afraid of more given it's a 1993 Honda that's rusting away.  Tender mercies.

Now we're all recovering from our "slack" day.  And hoping tomorrow, which is Ryan's last day before the big bad chemo drugs, goes better for all concerned.  Nothing like seeing car breakdowns and minor accidents in real perspective........

----Barb

Day 4 - May 10th

Overall a better day.  Ryan got another "6 pack" today - platelets, that is.  He's becoming a 6-pack-a-day kinda guy!

They also added a little color with some more red cell transfusions.

His daily numbers are:  WBC:104,000, Hbg: 5 (7 after transfusions), Platelets 20 (50 after the 6 pack).

He started his steroids today.  He'll get mega-dose steroids for 3 days, then start his IV chemo (Cytoxan) on Sunday.  There is a complicated regimen of 3 powerful chemo drugs (Cytoxan, methotrexate and a third one I can't remember) at various times over the next 3 weeks. 

Because these drugs don't cross the blood-brain barrier, he also gets chemo directly into his cerebrospinal fluid (CSF - the fluid that coats the brain and spinal cord) via a spinal tap.  His first tap was today right after the platelets to prevent bleeding at the site.  Waiting all day in anticipation was the hardest part.  He tolerated it well - compared to the bone marrow biopsy the discomfort was minimal.

The really good news is that there were no cancer cells in the CSF they drew off to test before injecting the chemo.

Ryan's spirits are better.  A dear friend from New Hampshire was able to spend the afternoon and evening with him.  He was Ryan's YM leader years ago in Glens Falls and reached out to Ryan at a time when he was kind of unreachable.  He is a funny guy and his visit was just the right medicine.

Sophia's brother will stay on a cot in Ryan's room tonight and Sophia will hopefully get a good nights rest at home.

Tomorrow will be more steroids, maybe some more blood, and some rest.  We're going to cater his favorite foods over the next 2 days before the nausea and appetite effects of the chemo hit.

Thanks and our love to all of you!!

Barb

"Day 3" - OR "The Great Hat Contest"

OK - we've made it through the first few days, and all of us are still breathing.  Ryan is medically stabilized, and doing better emotionally.   With his beautiful wife at his side (literally - they can both fit in that hospital bed!!!) he feels calmer and more prepared to tackle this.

He got his platelet transfusion this morning, but it barely raised his count - definitely not high enough for a surgical procedure to install the Hickman catheter (an IV line which tunnels under his chest skin and into the Vena Cava just above the heart to deliver his chemo).  So instead they put in a "pik" line - a long IV that goes into his arm and goes all the way to the vena cava - less comfortable for him, but a safer procedure in someone with low platelets.

He starts his chemo tomorrow with "intrathecal" injection - putting the chemo directly into the spinal tap needle.  This is necessary since the tumor cells can go into his brain and spinal cord, but the IV chemo doesn't cross the blood-brain barrier. 

Now the biggest challenge of the day - FINDING THE RIGHT HAT!!!

Everyone is invited to choose a hat - whatever you think will look good on a bald Ryan.  He plans to sacrifice his hair to science in the next few day with a buzz cut. 

But what to wear..............

Splurge a little, and send your selection to:  85 Lower Newtown Rd, Waterford, NY  12188.

We'll post the pictures, and you may one day see your fashion statement right here!!!

We are ready for battle.  All the prayers are definitely being felt by all of us.  As a mother, I'm amazed that I'm not a complete wreck at this point.  Tired.  Concerned.  Aching for what Ryan and Sophia are going through.  Yet remarkably calm and peaceful.  It's either denial or the comforting influence of the Holy Ghost.  I believe it's that latter.

Come on this journey with us.  Please continue to pray for us. Laugh and cry with us. 

And send some hats!!!!!

(-----Barb, Ryan's mom)

Note from Sophia

Hey everyone, this is Sophia, Ryan's wife, letting you guys know that from the bottom of our hearts, we appreciate all the support and prayers from you all.
It's been a real kick to the ribs. No one ever thinks they're going to get cancer. Ryan never did. It's something that breaks your heart and leaves you on your knees, gasping for air.
But I firmly believe that this is God's biggest challenge for him, this is what will break him, or make him an immovable power-house of faith and enduring to the end.
And we thank you so much for being a part of this journey with us.

Day 2

Tuesday, May 8th

Very early today the bone marrow biopsy was done.  I was concerned that it would be very painful, but Ryan said it just felt strange.  Less painful than the IV catheter inserted yesterday - which still annoys him since he can't turn his head without tugging on where it enters the skin.

Then a "MUGA" scan - to check the function and health of his heart before starting the serious chemotherapy
which can damage the heart.
Ryan's case was discussed at the hospital's Tumor Board's noon meeting.  All the various people involved with diagnosis and treatment - pathologists, radiologists, oncologists, etc.  His final diagnosis is Acute Lymphocytic Leukemia.  His will be in the hospital for a month, receiving 3 types of chemo plus steroids.  Ryan asked questions about the statistics and side effects.  He'll lose his hair, probably have some GI side effects.  It will wipe out most of his marrow, making his susceptible to infections and requiring isolation.

Reality hit.  Bald.  Sick.  Really sick.  What about living a long life with Sophia and having a family?   

I can't begin to imagine what Ryan must be feeling.  I was shaking as the oncologist layed out the details.

Steak dinner tonight and a visit from his little sisters before his immunity is compromised.  New port in the morning. 

I'm starting this blog so that all of us - but mostly Ryan - don't have to answer the same questions over and over, and yet keep all our loved ones informed of what is happening.

There may be times in the next few weeks that Ryan is too tired or too sick or it's too painful to discuss.  At those times, he can turn off his phone.  And when he talks to you, he will know that he can just enjoy talking to you without having to give a blow-by-blow. 

We still want to hear from all of you who love him.  And we really need and appreciate your prayers.

I'll try to update this daily while still respecting privacy when Ryan needs it.

Thanks for loving Ryan.  Please continue to pray for him.  He is about to embark on the battle of a lifetime.

Day 1

Monday, May 7th


It started with feeling tired and weak and having severe headaches in March.  What seemed like a common complaint in a stressed tired college student.  Last weekend he had trouble catching his breath after walking up a single flight of stairs, and his heart rate doubled from his resting heart rate.  That set off a few alarms.

On the moring on Monday, May 7th, Ryan went for a medical evaluation and we requested blood tests.  A few hours later, we had a call saying that he had leukemia, and instructions to go immediately to Albany Medical Center ER.

We all felt like we'd had the air sucked out of us.  LEUKEMIA?  But he's young and healthy.  But he just got married.  But he's got his whole life ahead of him.  This can't be.

The ER Staff was excellent.  They immediately started doing all the things necessary to figure out what was going on and start the long marathon which will conprise most of Ryan's life for the forseeable future.

Leukemia is a cancer of the blood cell-producing tissue in the bone marrow.  Normally we have a WBC (White Blood Cell) count of less than 10,000.  Ryan's WBC was 280,000.  Normal hemoglobin (the oxygen-carrying chemical in Red Blood Cells or RBCs) is 12 - Ryan's was 7.   His platelet count was also low - indicating that his marrow is overgrown with abnormal cells and not able to produce adequate RBCs and platelets.

Additionally, when cells die, they release potassium ("K") - because of the huge number of abnormal cells dying in his blood stream, his potassium was 6.1 - approaching the level where K can cause cardiac arrythmias.

Ryan sat stunned, repeatedly answering the same question to a steady stream of physicians at various stages of training.  I went into professional mode - block out all the emotions and do what needs to be done.

We were relieved to meet Dr. Rauch - an oncologist whom Tim knows professionally and has a reputation as a superb physician.  He explained the above lab results and the risk of "sludging" of blood in capillaries due to the thickening of the blood with so many extra cells.  The effect would be similar to having multiple tiny clots throughout the body and could cause damage to organs, including the brain.

The treatment to reduce the cells is called "phoresis" - a large catheter was placed in Ryan's neck and passed into the Superior Vena Cava - the large vein bringing blood to the heart.  The catheter has 2 chnnels - one to take blood away from his body into the machine, and the other to return his fitered blood back to his body.

The blood goes into a centrifuge which separates the blood into its various components.  Depending on what need to be removed, setting on the machine selectively direct it to remove a particular layer, having little inpace on the other components.  In Ryan's case, they removed the WBCs (2.5 liters of them), leaving the RBCs, platelets & plasma.  This procedure circulated his entire blood volume twice, and reduced his WBC from 280,000 to 131,000.

To treat his anemia, he received 2 units of washed RBCs.  And started the oral chemo -hydroxyurea - which will help to kill of the bad cells.  And the meds to prevent a major side effect of hydroxyurea treatment called gout, where uric acid crystals form in the joints causing a remarkable painful athritis.

Then finally around 2 am, he got to his room for a short & sleepless night.