Schedule Redux

"If you want a guarantee, buy a toaster." - Clint Eastwood

Following is Elise's updated schedule as we know it today. But as we say at work, a schedule is something to deviate from. Becky has picked up a head cold (not surprising given all the people we've been around) and Elise and I are doing what we can to avoid getting it, but past experience would indicate that's a pretty futile effort. If she/we can't stay healthy there's the chance this will all be delayed more. I'm not sure if this is a good or bad thing, but I think we're all ready to move forward.

Behind us:

18 May: Return to NIH
19-23 May: Lots of tests and consults
23 May: first night in the Rockville apartment
25-28 May: unplanned pleasure trip to NYC
29 May: 24 hour urine collecton
30 May: blood test, 24 hour urine collection, etc

Still ahead:

4 June: hospital inpatient admission (we should also know today if the donation went as planned)
5 June: Hickman catheter placement and bone marrow sample (ouch)
6 June: catheter "care & feeding" class
8 June (D-12): Palifermin dose - helps reduce mouth sores
9 June (D-11): Palifermin dose
10 June (D-10): Palifermin dose, radiation simulation (?)
11 June (D-9): Campath dose - it's a chemotherapy agent used to deplete T-cells in prep for transplant
12 June (D-8): Campath dose
13 June (D-7): Campath dose
14 June (D-6): Campath dose (my 52nd birhday)
15 June (D-5): Campath dose
16 June (D-4): Busulfan dose - it's a chemotherapy agent used to lower the white blood cell count
17 June (D-3): Busulfan dose
18 June (D-2): 2 doses (morning and afternoon session) of total body irradiation
19 June (D-1): "Rest", echocardiogram, 24 hr Holter heart monitor recording
20 June (D0): Cell infusion (i.e. the stem cell transplant)
21-23 June (D1-3): more Paliferiman doses (this period is supposed to be really uncomfortable)
24 June - 3 July (D4-13): waiting for stem cells to engraft, and treating whatever pops up - this is a very risky period
4 July (D14): DHR/chimerism test to see if cells are starting to engraft (Independence Day)
5-14 July (D15-23): more waiting and treating whatever pops up
15 July (D24): DHR/chimerism test to check engraftment process
21 July (D30): this is the earliest Elise could be released from the hospital
5 Aug (D45): if things have gone well Elise should be release from the hospital by now and we'll be living in our apartment in Rockville
6 Aug - late-Sept (D100): lots of trips to the hospital for tests, transfusions, maybe some rehospitalization if things flare up, and also school tutoring.

If all goes well then we'll be able to come home after D100.

We've been making various sightseeing excursions. We hit a few of the museums on Saturday and the Washington Folk Festival at Echo Park yesterday. Not sure what we'll work into the next couple of days given Becky's head cold (which can be pretty miserable), but I'm sure we'll do some more fun stuff.

Jug O' Apple Juice

"If the facts don't fit the theory, change the facts." - Albert Einstein

We all got up early so we could head down to NIH for some more tests this morning. Well I guess it wasn't that early since I'm already on east coast time and the coffee was brewing by about 0530 EST.

In any case we headed down the road a short way (NIH is about a 15-20 minute straight shot down Rockville Pike) to turn in Elise's big jug o' pee and have a few more tests run. She was supposed to collect 24 hours worth of urine and so we'd stayed home almost all day Thursday just for the big collection event.

We got there quickly and through the gate amazingly fast (NIH is a Federal facility so the security can be arduous  they run a bomb swab on each vehicle). We walked to the pediatric clinic and Elise presented them with the "apple juice". Then we had to wait for phlebotomy to draw blood. I thought it was some sort of special test they'd forgotten, but apparently it was (yet another) pregnancy test. They are required to do a pregnancy test on women within 7 days of starting any new category C or above drugs (i.e. risk to a fetus), and obviously some of the medications she's going to get fall into that category.

Next we waited around for a CT scan of her sinuses that had been missed last week. That went fairly quick and we were out of there. We took advantage of the situation and headed to the local wig shop so that Elise could pick out a wig since she'll lose her hair. NIH provided a voucher for $225 towards a wig and they recommend this shop. I was surprised when we walked in, the proprietor was an elderly Asian man - not at all what I was expecting. He was great and had a good eye for what would look good. We don't know if Elise will even wear a wig, but her main Dr suggested we pick something out ahead of time so it wold be available when/if she wants it.

Elise tried on a few and picked one that reminded me of my sister Amy's hair color. Elise was surprisingly into the process of trying them on. I wasn't much help (no surprise there), but the proprietor, Becky and another woman who was in the shop were cheering her on. The woman gave us the phone number of a stylist that trim wigs to best suit an individual.

We got back to the apartment by 1130 so we decided to ride the Metro down to the National Zoo. We weren't there for an hour before they called and said she needed to come back because they'd found something in the CT and didn't want to wait through the weekend (but as usual they wouldn't say what they'd found over the phone).

At this point the news didn't really worry me. Elise seems to be in pretty good health and isn't acting sick at all so it couldn't be that bad. So we arranged a time to meet with the medical staff and spent some more time visiting the zoo before we headed back to NIH.

We got back to NIH at 1600 on a Friday and as you'd expect it was a ghost town. Elise was the only patient in the pediatric clinic (but they still put her in contact isolation). The PA showed up and told us that the CT scan had shown that she had fluid in her sinuses, but as I suspected, she also said that any random sampling of people off the street would show about a 50/50 chance of the same result. So we all waited for the infectious disease specialist to come and make a ruling. Eventually he showed up (he reminds me of Dr Phil), asked Elise about 10 question and said there was nothing to worry about. So no new meds and, more to the point, no delay of the BMT process while they treat a sinus infection.

But it all ended well because we took the Metro back to Rockville and stopped at Gordon Biersch for dinner and (for Becky and I) drinks. Then we walked back to the apartment. It's a beautiful evening, probably one of the last nice evenings for a walk for most of the summer.

So at this point we're clear of any additional tests until Elise is admitted on Wednesday, 4 June 2014. Even then they plan to place the Hickman IV line on Thursday and do a bone marrow puncture, and then she may be released "on pass" for the weekend. The heavy chemo won't start until the following week. Oh yeah, I still need to post the updated schedule. I'll try to do that this weekend...

If You Can Make It Here

"A hundred times have I thought New York is a catastrophe, and fifty times: It is a beautiful catastrophe." - Le Corbusier

"Like Vegas without the booze." - Becky Bechtel

We got back from our short but packed trip to New York City yesterday afternoon. This was an unplanned trip we took to take advantage of a delay before Elise's BMT process. I've got to say that I'm glad we went and it was a real neat experience, but I won't be going back real soon on personal travel. For a confirmed small town boy, that city is just too much. I think we all had a similar opinion. It's one of those places that you are glad other people enjoy living in because someone's got to do it.

We packed a lot into the few days we were there. We walked a bunch of miles (all recorded dutifully by Becky's Fitbit) and we rode the double decker buses from the north end of Manhattan island to the south end and many points in between. We went to several museums, up a couple huge buildings, through parts of Central Park, and even went on a speedboat ride ("The Beast") to the Statue of Liberty.

Once I got over the traffic (and gave the keys to the valet) and got comfortable it was simply awesome to see all the buildings. The architectural detail is just fascinating, you rarely see the attention to detail that most of the buildings built in the late 1800's through the 1930's have.

I was also impressed in a way by the traffic. Very few horns blared and it was relatively clean and quiet. Most of the taxi's are hybrid vehicles and most of the buses are "clean" so there isn't a lot of exhaust fumes. I was also quite surprised at how "safe" I felt. People were generally nice and the neighborhoods didn't seem "sketchy". Not at all what I anticipated.

The most striking contrast to me was the change from the weekend to the work week. Once the work week started the workforce came out on the streets. It was like the chaos of the weekend turned into a march of ants. It made me think of the pod people in Invasion of the Body Snatchers. They would come in waves and fan out from the subway stops on their way to their place of work. Was wild to watch from our hotel window high above it all.

But back to reality. NIH called yesterday and Elise has a few more tests we need to get done. So today is set aside for hanging out at the apartment and collecting pee for 24 hours (yipee!) Then she's got another CT scan and blood test tomorrow (and something else I can't quite remember). Hopefully that will be the last until she gets admitted midweek next week. I'm hoping we can get in a few more fun days as a family before the rough stuff starts.

This Salsa is from New York City

"settle in" - phrasal verb, to become familiar with somewhere new, such as a new house, job, or school, and to feel comfortable and happy there

Last night was our first in the new apartment in Rockville. After a bottle of wine, hummus, and some naan (no pita bread to be found), Becky and I slept well. Elise had a Frito boat (a recent favorite) and seemed to sleep really well too. I always find that a glass of wine in a new place seems to make it "home".

Becky and I went for a walk around the neighborhood in the morning and came across an event being set up in the Rockville town center. Starting at 2 pm there were 4 stages with continuous bands and the local restaurants were set up to provide small plate samples in exchange for tickets sold by the city. 

We spent the morning and afternoon putting the "final" touches on the apartment setup (yes I got some coffee mugs!) and then headed down to the event. It was really nice. Very family oriented and some good bands too.

Since Elise's schedule has been pushed out several days we decided to take advantage of our proximity and plan to visit New York City starting tomorrow for a few days. Becky and Elise have wanted to go but I've never put it very high on my priority list - I always figured they'd go sometime as a girl's getaway. In any case we got some "last minute" hotel room rates and plan to do the big tourist things. We're staying in the Times Square area so we'll also probably try to see a show "on Broadway". I already told Becky that if she wanted to go to Phantom then she'd need to go with Elise or by herself. We'll see...

So it will be a new adventure tomorrow.

Thank God it's the Weekend

"Like most of the world's population I'm into coffee, but in a properly big and important way. My perfect weekend would start with a pint of coffee." - Jimmy Carr

Lots happened the last couple of days but now were into the weekend and not much is scheduled.

On Thursday we met with the Dr. responsible for the radiation therapy. She went over a list of potential outcomes and had us sign a couple consents acknowledging the potential side effects and long term complications. Nothing sounded good, for example a trivial one was cataracts and a serious one was "death". The Dr. said cataracts was something they didn't worry about because it could be easily treated with surgery. But all in all she was positive and pointed out that the dose of total body irradiation Elise would receive was well below the levels that Leukemia patients undergo, so she thought most of the side effects and complications wouldn't be nearly as bad. With one exception...apparently lower doses of radiation can lead to painful salivary glands for a few days. She said they weren't sure why.

Elise also had an appointment with the nutritionist. Given her diet (typical 13 year old) this might be a worrisome event (mostly for her parents who harbor guilt about her diet), however Elise's over processed diet is exactly what they want. Organic, unpasteurized food can result in just what those processes came about to prevent: sickness. We often forget that the diets that are currently in vogue (organic vegetables, etc)  actually killed a LOT humans over time due to infectious agents in the food.

In the evening we had a nice meal outdoors at a "Neapolitan" pizza joint. (See picture). It was beautiful weather and the food was pretty good too.

Today was the Verizon FIOS install at our apartment, a ophthalmologist appointment, and moving into our apartment for the duration (ie leaving the Doubletree). All took longer than expected. FIOS rocks - the speed is something that I'll miss when we move back to Ridgecrest (where cable modem is about the best it gets.) The eye doctor didn't find anything unusual although Elise got to sport those cools shades they hand out when they dilate your pupils. And moving out of the Doubletree was a good trial at what it will take to pack the care to get home. Very full.

Tonight we're spending or first night at the new apartment. Becky and I were surprised that you can't get wine at a supermarket here in Maryland! We figured out the process but it just made us remember that we aren't at home.

Tomorrow morning will be interesting. I was real careful to make sure we had a coffee maker, coffee and foo foo creamer on hand for Saturday morning. Becky just pointed out that we don't have any coffee cups yet....aaaaaaaaggggggghhhhhhh! I guess that just mean we'll go for a morning walk and stumble across a Starbucks or some other caffeine establishment.

Shop Till You Drop

Today was "shopping day". Elise had the day off from tests and consults so we went to Ikea and Target to outfit the apartment. It was a lonnnggggg day. We spent about 4 hours at Ikea picking furniture and various housewares that are cheap but serviceable. It's an odd thing to do because at this point in our lives we like to purchase a fewer number of high quality items that are going to work well and last.

After Ikea we made a run to Target and stocked up on all the things you need to run a household. The fun stuff like trash bags, laundry detergent, floor cleaner, dish towels, etc. All those things you collect over years and then take for granted under your sink. We also needed to get bedding. At least that was a little fun because you can pick something that is interesting but you know you'll be sick of in 4 months. Think bright colors and/or wild patterns.

All told we dropped quite a bit of cash. Hopefully some will come back via resale or tax deductions.

Tomorrow (Thursday) we have more tests and consults.

And then I'll hustle up to the apartment for the Ikea delivery. Then the fun starts with assembly of all that Swedish engineered flatpack furniture. I can feel my wrists aching right now (those who've purchased Ikea goods know what I mean).

Isolation mini-test

"We don't function well as human beings when we're in isolation." - Robert Zemeckis

First let me say "I hate Windows 8". Okay, I've got that off my chest...

Today we checked into the Pediatric Clinic at NIH for another day of tests. Immediately they ushered Elise into a checkup room to put her on "contact isolation". Back in February when we were on a visit to NIH she tested positive for enterobacter which can cause opportunistic infections in immuno-compromised people.

When we were at NIH in April they retested and she was negative, but the protocol is 2-3 negative retests before you get a clean bill of health. The problem is they had only retested her 1 time so she was in the penalty box with no hope of getting out. So at least they got a swab today and hopefully she'll come up negative again and then she'll be able to wander about without the stigma of being put in a room with signs on the door and nurses who "gown-up" before entering. We've told her that she should be glad they take this type of care because she'll need it when she goes through the transplant process. But that doesn't help the feeling of being singled out.

The contact isolation event was a small test of what's to come when she really goes into isolation. I hope we can handle it better than we did today. I think maybe it was worse because it was unexpected and the room was really small.

The tests today started with a dental screening. She got to put her head in an xray machine and get a total jaw xray. Then the dentist poked and prodded her gums and declared her teeth and gums healthy. She'll get to use some super strong mouthwash daily post-transplant. It's nasty stuff (based on my experience after oral surgery), so I'm sure it will be a trial to get her to use it.

After the dentist we met with the social worker. She's seen Elise several times and so she was mostly checking in on our (yes all of us) mental states. I don't think she pronounced us "healthy" as the dentist had. She also gave us a voucher for a wig and gave us a flyer for a local place that patients use. We all joked about how Elise should get a grey wig that was in the flyer - it was good for a laugh.

We got to go outside to eat lunch. Elise isn't allowed in the cafeteria until she's cleared from contact isolation, so we took advantage of the nice day and picked a nice bench outside under a nice tree and ate lunch. We must have had a good idea because about 100 other people joined us in the outdoor seating area. It was really nice to be outside after being locked up in a small examining room.

After lunch we were supposed to meet with the nutritionist, but she rescheduled for Thursday. Good thing - Elise and Becky had big cookies from Au Bon Pain and I had a latte. Not exactly what I think the nutritionist would want to see.

Next Elise had her cardiac Holter monitor removed. The little electrodes stuck on a little to well and it wasn't any fun getting them off. Elise did make the best of it by picking out the little sticky gel from the electrodes and proceed to pretend it was boogers (I think the nurse got it started yesterday with the EKG electrodes).

Finally we finished up the testing for the day with a Pulmonary Function Test. This was some more high tech equipment that measures lung functionality. This went smoothly and we were done with testing for the day.

After that we headed off to pick up a new Toyota Rav4 that I'd arranged before we left Ridgecrest. I'd been planning to replace my 2001 Acura MDX and so I sold my car in Ridgecrest before we left. The car buying experience went as anticipated (ie the hardsell maintenance and extended warranty pitch happened just as I expected) and we drove away in a new Rav4 after a couple hours at the dealership. It's a nice car and we got a GREAT price through Costco ($1200 under invoice!)

We're back at the hotel and looking forward to a "day off". Elise was scheduled for a 24 hour urine collection, but we don't have a fridge in the hotel so we're going to do that later this week. When we asked if we could get a fridge in the room the front desk apologized that they'd already given out all the fridges they had but offered to store our "items" in their fridge. We decided not to take them up on the offer and bring down a big jug-o-pee.

So tomorrow we'll be hunting for furniture for the apartment. Its about break even to buy cheap furniture or rent for 4 months, so were going to buy. We figure we might be able to resell or donate it and get at least some of the cost back (through sale or tax writeoff). I think none of us is really excited about going furniture shopping, but we are looking forward to getting out of a hotel room.