October 20th: Falling through the cracks

I've raved and raved to everyone and praised God for the excellent care Ryan has gotten at Dana Farber. 

And then he was admitted to Brigham & Women's Hospital.

It's terrifying to fall through the racks at a world-renowned "Center of Excellence".

I can't tell you how confident we felt going into this, and knowing that this transplant program is one of the best in the world.  Reading the booklet I felt the program was so well organized, and I felt safe and secure with Ryan in their hands.  Everything at DFCI was supportive and reassuring. 

The problems began the minute we came to BWH.  Ryan's ER care on the 11th was excellent.  Except the fact that the Transplant team - who should have been the most interested in his care and in communicating with us - left us in the ER for hours NPO (i.e. prohibited from eating or drinking before a procedure) waiting to have lines placed and be admitted, after having decided to cancel the procedure and postpone the transplant  - and didn't bother to tell us.  I found out from Meghan at 4:30 on a Friday after the donor nurse called to tell her.  I told myself that they were busy taking care of sicker patients.

OK - water under the bridge, busy Friday, these things happen, let's move on. 

We go home for a week, come back with a really positive attitude, ready for "the best of the best" to do their stuff.

On Friday evening we were admitted quite late - Ryan ate in the morning when he wasn't supposed to eat. For safety reasons I fully support, they made him the last case of the day for his line placement under IV sedation.  So although Ryan was frustrated I kept reassuring him and telling him to quit complaining. 

I asked the nurse what time he would get his chemo on Saturday and she looked surprised and said she didn't have any chemo orders, and was I sure he was to get chemo?  I described the plan given us by Dr. Cutler which included high dose cytoxan on Sat and Sun followed by TBI Mon - Thursday.  She replied that sometimes there are changes and we should just wait until the morning.

Ryan asked for something for pain at the procedure site and was offered only tylenol, the nurse saying it was probably just the tape that was bothering him.  Really?  With 4 incisions in his neck and chest and a line tunneling under the skin on each side?  Plus: Ryan was told by Dr. Cutler last week not to take any tylenol because of liver concerns.

Saturday morning I arrived about 8:30 - certain that I had overslept and missed rounds.  Ryan had been given some dilaudid for pain at 6 am which triggered a severe headache.  Honestly, I'm not terribly concerned about this because it's just pain.  Sounds crazy, but if the nurse is busy with something more pressing with a sicker patient delays sometimes occur.  Surely when he needs the "real" care we came here for, the response will be better.  He asks for some morphine (now the headache hurts worse than the incisions), and is told he'll get some right away.  Two hours pass, and several calls later another nurse gives him 2 mg since his nurse is too busy.  No relief.  An hour later his nurse tells him he should wait a few hours to see if it "kicks in".  Are you kidding me?  IV morphine is usually gone by an hour or so.  At noon, he again asks for pain relief, and the nurse says she'll be back in when the doctors make rounds in a little bit and maybe they will order something then.  Ryan is in agony (maybe partly anxiety - but even so, shouldn't that still be addressed?) and retching into a basin. 

12:30: the attending comes in with the team and nurse and cheerfully says, "So how are we today?"  (didn't the nurse bother to mention that he was requesting pain relief and retching?)

Ryan responds, "pissed off" - not great way to open communications with a doctor you don't know.  The visit lasted about 2 minutes with the attending telling him they'd get him something.  No discussion whatsoever of his cancer, plan of management, what will be happening today.  Why did she even bother to make rounds on him?

But now he's been 4 hours without relief, and with a nurse who has been giving me the impression she can't get a response or orders from a physician.  I grabbed the resident with the chart as she headed for the door and begged her to write an order with a range of dosage so the nurse wouldn't have to bother her if the dose needed adjustments.  She looked hesitant, so I played the doctor card and told her as a physician I knew that such orders could be written and worked well for patients and house staff alike.  She wrote the order.

The afternoon passed hour by hour and I began asking the nurse when Ryan would be getting his chemo.  She said there were no orders for chemo, but that she was sure he'd get his radiation next week since radiation oncology doesn't work on weekends.  I stressed that Ryan was supposed to get chemo today asked her to call the resident and she assured me that she had.  I became more and more uneasy.

Around 5 pm I told her I really needed to speak in person to a physician who could tell us what was happening and explain if there was a change of plans.  No response.

At 6:30, I told the nurse if there wasn't a physician in my room by 7 pm, all hell was going to break loose.  (Do I really need to do that to get care?)  Then I overheard her talking to someone at the nurses station saying chemo orders needed to be in to the pharmacy by 9 pm and asking for orders.  I went out and asked if the conversation was about Ryan (believing that most patients had probably received their chemo much earlier in the day).  She reassured me that chemo orders "were being written" and he'd still get his chemo today. 

By now I am completely exasperated.  After he had no pain relief and little sleep last night, and was in pain and unable to rest most of the day, we're going to wait until 10 pm to start chemo that has to be given with large volumes of IV fluid and will have him urinating hourly for the next two days?  Really? 

Oh - And by the way, no doctor would be available to come in.

Now I'm ballistic - I demanded that some physician come and speak to us.  Immediately.  (foaming at the mouth, transforming into a strange combination of the increidble hulk and wolverine with rabies)

Dr. X, to her credit, did come in from home and talk to us and took responsibility for the situation.  She was under the impression that another attending was covering Dr. Cutler's patients and that that doctor was responsible for the chemo orders.  (What?  She made rounds at 12:30 and there were no orders on the chart and she didn't follow up? - precisely what did she do on her "rounds"?)  As she stood near the door talking to us, I told her to grab a chair and come sit down.  We needed to talk.  I was very frank/blunt (while trying not to get a label as the bitchy/doctor/mother) about my concerns.  She wrote the orders and Ryan finally received his chemo - at 1 am.  Ughhhhh..............

One explanation Dr. X gave for the day's errors was that Ryan was not on the usual transplant floor - 6A - so the nurses on 6D where we were may not be as familiar with transplant protocols.  Again - really????  The housestaff (residents - physicians in training who are in the hospital round the clock and do much of the hands-on patient care in teaching hospitals) was on the same floor (6D is just around the corner) and they couldn't come see him when (if?) the nurse called them?

I tell her that I want Ryan in the next available bed on the Transplant Unit.

All of these things are huge potential sources of medical error.  If I wasn't a physician and willing to raise heck, what would have happened today?  How can I leave the hospital at night or even go home to my family in Albany for a day or two and ever again feel confident that people here have their act together?

I feel violated.  My trust and sense of security is decimated.  How on earth can we feel confident that he will even survive this if this comedy of errors continues?  My feeling all day was that we needed to take the cells and run to another facility as fast as I could!! 

Although I fully understand a patient's first day in the hospital is not his riskiest day medically, it IS risky emotionally.  It sets the stage psychologically for all that follows.  Relationships are established.  Trust is built.  And if it's this messed up when he's not sick, the stakes are stronimically higher in a few days when he is sick!

  

Again unable to sleep, I spend most of the night in the hotel cafe so I don't disturb Meghan's sleep, writing a scathing e-mail to our transplant nurse coordinator and playing solitaire.  I took Meghan to the airport, went to bed and got 3 hours of sleep and went back to the hospital.  When I arrived the less-than-helpful-yesterday-nurse asked if I was feeling better today.  Controlling my urge to re-arrange her dentition, I walked past her into Ryan's room without a reply.

This is really challenging.  I'm really trying to control my anger, no-make that rage, I want to tuck him into my arms and run away.  Trying to be calm and read my book - same page for most of the morning.

Ryan tolerated the first day of Cytoxan pretty well.  Tongue sores are beginning.  He's tired from no sleep, but he is upbeat.  For his sake I'm trying to smile and be positive.  But I can't help feeling my face probably looks more like a grimace.  I'm still so angry (and scared for what lies ahead) that I'm trembling.

At 2 pm he's transferred to 6A - the "real" transplant unit.   Dr X is there with orders.  She stops in and discusses his care.  The nurse on this unit is upbeat and informative.  She orients Ryan to the unit, showing him where the snacks and drinks are.  She tells him what time he is to go for TBI in the morning.  What time he will get his chemo tonight (midnight again, since it needs to be 24 hours after the first dose).  That in precisely 2 weeks his hair will fall out again.  That his GVH (graft-versus-host) meds will start tomorrow on "Day -3".  Transplant day - Thursday Oct 25 - is Day Zero.  The days counting down to it are negative, and the days after it are positive.  Certain things happen predictably on certain days, and certain treatments are given at certain times in the process.

I slump into the chair to read my book.  I feel the tension starting to leave my body.  I think maybe I feel safe again.  Then I feel my rage over yesterday resurface.  Gotta get over this.  This isn't doing anybody any good.  Need some rest.  Need to put some space between me and this place and pull myself together.

Confident (or at least hopeful) that Ryan is finally in good hands, I decide to go home for a couple of days.  Sophia is here with him, and she's much better than I at cheering him and entertaining him.  Back to the hotel to pick up all of our laundry.  Scalp is crawling.  Shoulder & neck are tight.  Stress.  A few Motrin and a large diet Coke from the nearby McDonald's to keep me awake and I hit the road hoping to not fall asleep on the drive. 

Driving home, I feel like I need to vent to somebody or I'll explode, and poor Sean calls from Albania.  So he hears my whole rant.  I can feel the love and support through the phone, and it comforts me.  Through the front door and both girls attack me with hugs.  Fighting back tears.  The house looks great - Tim knew I was coming home to surprise the girls and had them all help clean the house.  Snuggle with the girls, sing silly bedtime songs, relax into my bed hoping for sleep.  But the minute it's quiet and my lids close everything comes pouring back - the plight of the characters in the book I'm reading (maybe I should switch to romance novels for a while), problems with tenants, details of refinancing the mortgage on a rental place I own, what's left to be done before Ryan comes home, is Ryan getting any rest?, need to get the dog shaved to minimize dog hair in the house, need to schedule an orthodontist appt to replace MeiLin's spacer and fix Kaia's retainer where it's cutting into her gums, is Ryan safe? are they giving him his treatments on time?  what if the night nurse on the new unit isn't as responsive as the day nurse?  Got up, took an Ativan (a weaker cousin of valium), watched some mind-numbing TV in the recliner until I fell asleep. 

Tim got the girls off to school today without waking me up.  Guilt.  I wanted to get them breakfast and kiss them before they got on the bus.

The book I'm reading is about a young mother in Germany who struggles to protect, clothe and feed her child during WWII.  So much is completely beyond her control.  She does whatever she has to do, yet it never seems enough.  I relate. 

Yup - time to switch to romance novels........

---Barb

October 18th: Meghan's stem cells are in the bag.......

Meghan's first shot of neupegen was on Sunday soon after her flight arrived.  She was exhausted so she napped while I worked out at the hotel (yes - you read that correctly.....). She woke up with a bad headache and over the evening had gradual increasing discomfort in her back.

She had additional injections on Monday, Tuesday and Wednesday mornings - following which she felt really tired and slept for a while each day.  Hard to tell how much of this was due to the medication and how much was baseline tiredness coupled with a red-eye and a time zone change.  In the afternoons, we walked the Freedom Trail and explored the city with Meghan's former BYU roommate who now lives in Boston.  On Monday she went to FHE with a singles ward in Boston and encountered a few people she knew from BYU who are here working on Romney's campaign.

Her bone pain has gotten progressively worse daily - a lot of chest pain last night.  This is all due to stimulation and "swelling" of the marrow. 

Every evening as she groans in bed beside me I feel so conflicted as a mother.  Part of me has my fingers crossed that her discomfort means her marrow is churning out lots of lovely little stem cells ready to be adopted by her brother to keep him alive indefinitely.   Part of me wishes I could do something to ease her pain (she refuses pain meds).  All of me is grateful for her willingness to do this.

Yesterday (Wed, Oct 17th), I drove back home to be with the girls while Tim was on his last out of town trip for a while, and to bring Ryan and Sophia back to Boston today.  Both girls slept in my bedroom last night, and the dog whined out in the dark for my attention.  I fell asleep surrounded by kids and a dog who needed attention.  After Kaia got on the bus this morning, we hit the road for Boston yet again.

Ryan and Sophia went to the Boston Temple, then we went to pick up Meghan.  She had a large bore IV in each arm - one in the right antecubital (in the bend of the elbow), the other in the left forearm.  She couldn't bend the right arm all day, making it pretty painful by the end of the day.

The medicine which prevents clots during the process also lowers the body's calcium.  This causes tingling in the fingertips and lips, and muscle cramps.  It was pretty pronounced in Meghan's case.  She didn't tell them about it until it was pretty bad, thinking it just came with the territory.  They slowed down the filtering and gave her calcium in her IV to minimize it, but she was still pretty miserable.  And then there was the necessity of using the bedside commode to urinate.......

We all went out to dinner - Ryan and Sophia took us to a Mexican restaurant - and then to a local cupcake shop (famous for a TV show about it's founders).  Meghan toughed it out, but feels pretty miserable.  I insisted she take some pain meds tonight and she's sleeping while I type this.

Tomorrow she will have another 8-10 hours on the machine collecting stem cells.  And Ryan will have his central lines placed and be admitted for the barrage of chemo and total body radiation over the next week to wipe out his marrow before receiving Meghan's stem cells via IV next Thursday. 

I've grown pretty "hard" over the years.  Empathizing with my patients and caring deeply about them, but keeping up enough of a wall to protect me from the bad stuff.  And this is bad stuff.  Keeping busy helps me protect myself from the pain and keep functioning.  Hanging on to that "to do" list.  It's as if I'm not really experiencing this - like I'm at a distance watching someone else go through it.  Sometimes that distance and tendency to block out the pain makes me wonder about myself and what I have become.  I wonder what it would be like to have a couple days of pitty-party, but fear opening that flood gate.  My style has always been to simply push through the hard things and get to the other side.  For now, I'm simply trying to make the right decisions in the balance between meeting the needs of all my kids and my hubby, and to provide support as best I can to Ryan, Sophia & Meghan.

Tonight as I listen to Meghan's quiet breathing as she sleeps across the hotel room, and picture Ryan as he will inevitably look next week, and remember the girls clinging to me last night, the tears are welling up.  Strangely, it's not just for the pain, but also for the love.

"there must needs be opposition in all things" (-from The Book of Mormon)

---Barb

October 11: Brain radiation; transplant postponed

Acute Lymphoblastic Leukemia recurrences often are in the Central Nervous System - the brain.  For this reason, pre-transplant brain radiation is done at a dosage known to be effective for leukemia.  This preventative therapy involves a significantly lower dose than than is used to treat brain tumors. 

Today Ryan started his brain radiation.  It took less than 10 minutes, and he felt great afterwards - well enough that he want to go to Salem for the afternoon.  We made the 20 minute trip, only for him to develop a severe headache.  After no response to a couple of Tylenol with codeine, he called his doctor and we headed back to Dana Farber to fill the prescription.

Hoping a nap would help, I took them to their hotel.  I had reserved an inexpensive room via Priceline.com in a different hotel so they could have their last night together without me around.  In my room I savored the warm chocolate chip cookie given to me on admission along with a cup of herbal tea, and crawled under the covers. 

Then Ryan called to say he was throwing up and his headache was worse than ever. 

So I got out of the cozy bed and packed up.  We headed to the ER for IV fluids, nausea meds and some IV morphine.  Since he was scheduled to be admitted the next day the decision was made to just go ahead and admit him.  Sophia and I left at midnight to get some rest.

Friday morning, Ryan was still in the ER.  No beds were available for admission.  Plan B was to have his central lines placed as scheduled at 12:30, followed by brain radiation, then admission.  At 1:00 he was still waiting, so Sophia and I went to grab some lunch.  While we were gone, the transplant doctor on duty (Dr. Cutler was out of town) came to see him and noted that he had a cough (tail end of a virus MeiLin shared with all of us...), and told Ryan that although they wouldn't be giving him cytoxan while he had an possible infection, they would proceed with the line placement and last dose of brain radiation. 

Then Meghan called to ask what was happening because she had gotten a voice mail saying that they were going ahead with her donation "anyway".  When she reached the donor nurse she was told that Ryan had been postponed a week, but her collection was to proceed as scheduled.

Two more hours of waiting in the ED with nothing happening.  I called our transplant nurse who confirmed the postponement and apologized - she thought the doctor on duty had informed Ryan.  Although Ryan was to proceed with the brain radiation, the line placement would wait until his admission next week (makes sense since the longer the lines or any foreign body is in place, the higher the risk of infection).  We asked that Ryan be admitted overnight for pain and nausea control.

Ryan tolerated the second radiation dose better than the first, but was glad to be where he got adequate pain relief and nausea control.

Home to New York on Saturday afternoon with Ryan and Sophia, dinner with the family, tucked the girls in, then drove back to Boston to get some rest before meeting Meghan's red-eye from Phoenix at 10 am Sunday morning.

There is no doubt that the decision to delay was the correct one medically.  But it kinda took the wind out of our sails.  We were all geared up to "git 'er done", and it was disheartening to wait another week.

I had to ask if there was a downside to having a week between the donation and the transplant.  Meghan's cells will be cryopreserved (frozen), where up to 50% may not survive the freezing and defrosting.  So she will undergo collection for two days for sure, rather than one day with a possible second day.  They'll simply collect twice as many cells.  The amount of cells transplanted in Ryan will be the same, and will be just as healthy, with just as good results.

---Barb

October 10: Busy week before the transplant

It's been a crazy week as I scramble to get everything ready for my absence and Ryan enjoys the things that he won't be able to do for quite a while after his transplant.  Sophia has been at home and they've been able to do things together.

The Halloween costumes for the girls are nearly done - for the first time in my life I was trembling as I threaded the needle.  While I recognize that stress in as inherent part of this journey, I've kept so busy doing what needs to be done that I haven't taken time to recognize the always-present stress and fear that lies beneath the surface.

Ryan has been remarkably upbeat through this whole thing, but this week he's irritable - especially with Kaia.  And she responds by making remarks about him not being in our "family" anyway - wishing that things were back to "normal" with just the four of us at home.  I also suspect that it's Kaia's way of protecting herself from the hurt of possibly losing Ryan.  The trauma of her adoption still surfaces sometimes in a reluctance to trust and allow herself to make bonds that could end (like her attachment to her Chinese nannies betrayed her trust as they gave her away to strangers - us).  So she's had a few meltdowns as well.

In our "life happens" update:  car problems.  The passenger side visor starting flopping down - an annoyance to whoever is seated there, and the air bag light came on.  Of course, the only day the shops could fit me in was the day before we leave for Boston.  Visor fixed - no problem.  But the airbag sensor in the passenger seat bottom is malfunctioning and the seat bottom needs to be sent to California for repairs.  So they give me a rental car, but want it back in 3 days while I will still be in Boston.  So Tim will drive the rental and I will take his car to Boston.  The tender mercy in all this is that it didn't cost anything.  Whew!!!

In the humor department:  The poor guys who did my first-ever car detailing earned their pay!  My car is the ultimate "cheerio-mobile".  Pretty dirty - even after taking out the raisins, French fries and hair ties.  When I went to pick it up, they said they had removed 5 1/2 pounds of birdseed from the spare tire well under the trunk!!  I had forgotten that a 5 gallon pail of birdseed for a second grade class birdfeeder project spilled in the trunk 2 years ago!!  Another tender mercy - realizing that I didn't have a flat tire in the past 2 years.......
(if anyone needs a car detailed, give the guys at Carlito's Extreme Detailing in Clifton Park a shot - I highly recommend them!)  But I'm so embarassed, I

Packing for a prolonged stay in Boston, appreciating those who will be bringing some meals to Tim and the girls, feeling conflicted about where my time should be spent - with my young daughters or my son with leukemia - not to mention my stalwart husband. This, too, shall pass.

---Barb

October 2nd: More stress and blessings

Driving home from our counseling session feeling glum already, Ryan got a call from Sophia that she had been laid off.  At first it felt like one more painful blow.  Ryan was totally exasperated.  Already overwhelmed with the scary medical details discussed in Boston, he looked like he'd been sucker-punched.

As the miles passed, the realization hit that this may be a blessing in disguise.  Notwithstanding the hurt Sophia was feeling and the loss of income for them, there are several advantages.  Sophia will be able to be with him in Boston.  With Sophia as the "caretaker", reduced cost hotel rooms ($40/day rather than $169 for the same room at the same hotel) will now be available since Sophia meets the "means testing" for income eligibility for the program and I don't.  Not that we are hurting, and we know that we are very blessed financially compared to most people who experience this - but the constant travel, meals away from home, gas & lodging really do add up.  Now Sophia will be able to stay in a hotel within the allotted per diem the insurance pays (which in itself is another incredible blessing), with a little left for food.

And  I will be able to be home more with the girls and Tim.  Although Tim is remarkably self-sufficient, there are things that moms do that dads don't, and some things that are a priority to me that aren't to him (practicing piano, doing Chinese lessons on-line, etc).  And let's face it - having Mommie tuck you in is something that just can't be replaced.  And it's good for Mom, too!

I'll be putting on more milage, but at this point the car is on auto-pilot between home and Boston.  Thanks to some great audiobooks, the miles fly by pretty quickly.

So we'll change to plan B and appreciate that Ryan and Sophia can be together.  Unlike my little girls, he is at the point in his life where someone other than Mom is his rock and his cheerleader.

---Barb

Cot 2: Pre-transplant counseling......

(This post is late - the counseling was two weeks ago, but I want to include it here for those who may follow on this path - then I'll update on what's happened since then)

Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11.  Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details.  In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.

Bottom line:  it's SCARY.  He had previously discussed some of the risks, such as hepatic occlusive disease, with us.  And of course infectious risk seems obvious.  I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat. 

The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition.  That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.

I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures.  The doctor asked whether he wanted breathing tubes, etc.  Ryan's initial reaction was that he'd rather not have them.  The doctor replied that of course no one wants them and these aren't used unless necessary.  Ryan repeated that he'd rather not have them.  I unstantly recognized that we were talking life support.

I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying.  And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering.  At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary.  Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway).  Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.

Ryan signed the consents.

The ride home was somber.  The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.

The weather was gray, and so was our mood.

Until this point, we had been sailing forward toward this future, happy to have survived to this point.  Once again: what choice do we have?  Going boldly where we never wanted to go.  Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.

---Barb

October 2 - Sobering details of what lies ahead

We went to Boston last weekend for a mini family vacation at a hotel with a pool - timed to coincide with Meghan's trip for her preliminary testing.  The "kids" (everybody but Tim) and I went on the MBTA to the Aquarium and Quincy Market, and the little girls spent a lot of time in the pool.  Tim and Sophia and the girls left for Albany on Monday.

Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect.  She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections.  She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days.  On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells.  The lab will "count" them and then they will be infused into Ryan very soon thereafter.  If they were unable to harvest enough, the process will be repeated on Friday. 

Meghan has some friends in Boston.  She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.

Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday.  His first appointment was with the radiation oncologist.  She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday.  To stabilize his head during the radiation he was fitted for a mask.  To do this, they heat a plastic mesh sheet and press it down over his head.  When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard. 

And the TBI - total body irradiation, which will be divided into 7 doses over four days.  Sobering discussion of the side effects and potential complications.  Short-term, Ryan can expect to be extremely weak and tired.  Long-term:  expect development of cataracts at a younger age, and thyroid failure.  My understanding was that both are pretty much expected rather than possibilities.  There can be swelling of the parotid gland and mouth sores.  Consents signed - what choice do we have, really?  Glad he'll be alive to have cataracts and hypothyroidism. 

(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)

Then on to meet with a social worker.  They offer emotional support and practical support such as help finding housing for the "Caretaker".  Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her.  Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far.  Yet this is the first time any kind of emotional support has been offered.  Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network. 

Next we met with Pat Byrne - our transplant nurse case manager.  Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control.  So we can't help but be very fond of Pat.  Pat explained the procedure from start to finish:

Thursday, October 11:  Ryan receives out-patient CNS radiation - just a few minutes. 

Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology.  These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc.  Then he receives his second and final dose of CNS radiation.

Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy.  It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently.  This will also be given on Sunday.  He'll lose his hair again.

Sunday, October 14 - Second day of Cytoxan for Ryan.  Megan arrives and starts her Neupegen.

Monday through Wednesday:  Ryan gets twice daily TBI - total body radiation.  Meghan gets daily injections - she might feel well, and might have flu-like symptoms.

Thursday - Ryan get his last TBI.  Meghan has phoresis.  Ryan receives the transplant.  The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.

Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells.  Ryan's new cells start to find their way to his marrow.

Pat told us what we need to do before and after to protect Ryan from infection.  The dietary and social restrictions.  And more.  He needs to change his clothes daily.  Keep visitors to a minimum.  Visitors will need to wear masks.  Luggage, etc, that might have germs can't enter the room.  There will be very close monitoring by his nurses.  He'll have frequent blood tests to follow his progress.  

She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them.  They're all rooting for him. 

For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber.  The positivity and personal care we've received has been really impressive. 

Then labs.

Then his appointment with Dr. Cutler - his transplant physician.  But it's getting late, so that's a story for another post.........
---Barb