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.

Off To A Good Start

"When we are sure that we are on the right road there is no need to plan our journey too far ahead. No need to burden ourselves with doubts and fears as to the obstacles that may bar our progress. We cannot take more than one step at a time." - Orison Swett Marden

We made it to Bethesda last night. We found out Saturday that we wouldn't be staying at the Childrens Inn, rather they put us at the Doubletree in Bethesda, MD because Elise hadn't cleared the "contact isolation" order yet (from back in Feb). Apparently she needs to test negative for enterobacter 2 or 3 times in a row before she comes off contact isolation. I think she tested negative the only time they've tested her since February.

Our first appointment was at 7:30 am. First up was signing consent forms and then getting briefed on the changes in the schedule that happened as early as 7 am this morning. I'll outline the updated schedule in a follow-on post because it deserves some detail on its own.

Following signing the consent form Elise queued up for blood draws. 13 vials in all. When compared to a blood donation its not much, but there will be a lot more to come so they actually track the volume in the computer.

Then we had the normal current health assessment which really didn't take long because they've seen Else so much lately. But the nurse practitioner gave us a little rundown on the roles of the various transplant staff.

Following the assessment we headed off to get Becky a "Extended Visitor" badge like Elise and I have. Since NIH is a federal facility they have security at all entrances and they search your luggage, etc just like at the airport. That is they do unless you have an Extended Visitor badge and then they basically scan it and wave you through. Very convenient.

Then we were off for an echo cardiogram. As I mentioned in one of my previous posts, one of the conditioning medications has reported heart function side effects as a rare possibility, so they check function before and after using it. The echo cardiogram is essentially an ultrasound for the heart. It's pretty high tech though and they can compute some heart efficiency metrics from the various measurements (valve diameter, volume, etc).

After the echo cardiogram we met with the Dr who runs the transplant program. She's pretty no-nonsense and she ran us through the risks to make sure we understood them. Scary stuff which I've written about in an earlier post. And then we signed more consents, this time for the transplant protocol itself.

Eventually we headed off for a CT scan of the chest, abdomen and pelvis. I thought they might want to do an IV to inject "contrast" dye, but they decided to use an oral contrast instead. Elise has done this before and during the earlier test she said the oral contrast tasted like "tires" so I wasn't looking forward to getting her to drink the stuff. But she said it didn't taste too bad this time and she got it down without any problems. Then the CT scan only took about 5 minutes - piece of cake. I was anticipating something much longer. I think I was thinking about an MRI or something.

Then we could all eat lunch - Elise wasn't able to eat for 4 hours before the CT scan so we were all pretty hungry.

After lunch we headed off for an electrocardiogram (EKG) and then she was fitted for a Holter monitor that she'll wear for the next 24 hours. It monitors her heart function and records certain information. She has to keep a journal that identified when she walks, eats and goes to the bathroom. Apparently these are events of interest to cardiologists. Becky said people have strokes when they go poop, I said they need more fiber. Elise laughed.

After that we were done with tests for the day. Whew!

So we headed off to Rockville to check into our apartment. We took the Metro up and walked to the apartment since we don't have a car yet. The apartment is about 5-10 minute walk to the Rockville Metro station. The Apartment seems nice and I think Becky and Elise are both pretty happy with it. (Elise was particularly impressed with the fuzzy, spotted caterpillar she found on the walk to the Metro.) I was breathing a sigh of relief since I rented it based only on pictures and reviews on the web. We'll be staying in the Doubletree until Friday and hopefully by then we'll have some furniture moved in and some semblance of apartment life started before Elise begins her inpatient period.

The schedule for tomorrow looks even busier. Beyond that is a bit sketchy and depends a lot on anything they find in the tests from Monday and Tuesday.

So we're off and running!

Best Laid Plans...

“It does not do to leave a live dragon out of your calculations, if you live near him.” 

― J.R.R. Tolkien, The Hobbit

It was bound to happen. Too many things were falling into place. We have an apartment lined up, utilities are scheduled, I sold my car in 1 day, Elise has finished nearly everything at school, ...

NIH called today and said there was an unexpected complication with Elise's donor. As I understand it the donor authorized peripheral blood stem cell collection but not a more invasive bone marrow harvest procedure. The peripheral blood stem cell collection method is preferred, but about 0.8% of the time the cells don't properly mobilize and so a bone marrow harvest is required. This is what happened to Elise when we attempted apheresis back in February and then again in April: her cells didn't mobilize sufficiently. So 0.8% seems like a remote possibility, but Elise's experience has been all about remote possibilities coming to pass. If only she could parlay this luck into winning lottery numbers!

The problem is that they'd planned for the stem cell collection on 4-5 June to support a 6 June transplant. That means they wouldn't know until after all the chemotherapy and radiation is already complete that the apheresis had been successful. And since the donor has chosen to not authorize a more invasive procedure if necessary, that leaves a 0.8% chance that Elise would have no immune system and no donor cells to transplant. Not good.

(I can't say that I blame the donor for their decision. Becky went through the bone marrow harvest process many years ago and it's no fun and takes some time to recover.)

So the fallback plan is to do the collection before chemotherapy starts and preserve the cells until the transplant date. NIH said they'd actually prefer this approach as the normal process, but for some reason the national bone marrow registry (?) only allows for "fresh" cells unless there is some reason (like this) to collect and then preserve the cells.

What this means is that the start of the conditioning regimen is likely to be delayed some amount of time; possibly as much as two weeks. We'll find out more tomorrow.

So we still have medical screening tests starting 0800 on Monday running through next week, but there might be a break in the action before conditioning begins. I guess we can use that time to get the apartment set up, go sight seeing, etc.

The Risks Associated with BMT

"We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” 

― Abraham Lincoln

Be forewarned: this is scary stuff, so don't read it if you really don't want to know. I prefer to know where the thorns are located.

A stem cell transplant is a risky procedure. There are different reasons people have stem cell transplants and so the treatment is tailored to their condition. For example someone with leukemia needs to have the disease largely eradicated as part of the process so that it doesn't come back. For immune system deficiencies it's a little different, all they want to do it get the new stem cells to engraft and start functioning; there is no underlying blood disease to treat.

In addition to the underlying reason driving the need for a transplant, there is also a difference based on who the donor is. If you are lucky enough to have a HLA-matched sibling as a donor it's know as an "allogenic" transplant. If the donor isn't a sibling, then it's called a "matched unrelated donor transplant" or MUD-BMT. At NIH, additional steps, namely total body irradiation, are taken to increase the odds of success for a MUD-BMT.

As a result the risks vary based on the details of the procedure.

Here are the risks as I know them presented in order of the procedure. I don't really know the relative risk levels.

Pre-conditioning:

There are a lot of test that happen in the week leading into the "conditioning regimen". There are minor risks associated with each of the tests. The most notable risk, and one that will go on until the end of the 4 months of treatment is the Hickman Intravenous Line. This is a long term catheter than provides access for drawing blood, injections, intravenous feeding (if necessary), etc.The placement of the catheter has risk of collapsing a lung, puncture or infection. Longer term, there is risk of infection at the site.

Conditioning:

The conditioning process is intended to knock down Elise's immune system so that the donor cells can engraft after they are transfused. The conditioning protocol consists of a series of two different chemotherapy drugs followed by total body irradiation and then a long-term immunosupressant.

The first chemotherapy drug they will use is alemtuzumab ("Campath-1H"). This drug is a powerful immunosuppressant. "The drug is typically well tolerated but can cause some side effects..." It has the typical potential minor side effects (diarrhea, headache, shortness of breath), but it also has some striking rare side effects ("fatal reactions") that they pre-medicate to prevent and then monitor closely during the infusion process. The biggest risk is the intended action of the drug: it knocks down the immune system and therefore you are open to infections for "a number of months after receiving". Another recently reported potential side effect is "abnormalities of heart function". Elise's heart function will be evaluated with an echocardiogram and 24-hour Holter monitor as part of the work-up and then closely monitored after treatment with similar diagnostics.

The second chemotherapy drug they will use is Busulfan. "At lower doses, it tends to kill mostly myeloid-type (germ fighting) cells of the immune system." It has a list of possible side effects that range from nausea and vomiting to infertility and cancer (!) It can also cause seizures, so as a precaution they'll also be using an anti-seizure medication called clonazepam. A rare side effect of busulfan  is scarring of the lung tissue that can develop as late as 4-10 years after receiving the drug. Elise's protocol will use lower doses of Busulfan than a patient with leukemia would receive, but I've read that the drug is hard to dose properly: high doses cause problems, and too low a dose can lead to graft failure.

The total body irradiation (TBI) is apparently much lower levels than a leukemia patient would receive, but much higher than anyone in the general public would get at any point in their lives. The risks are nausea, vomiting, mouth sores, a host of organ diseases, and sterility. They've said there is a good chance Elise won't be able to have kids. I've also read that TBI can affect cognitive ability at higher doses, but the NIH consent doesn't mention this.

One thing they have told us is that Elise will lose her hair temporarily as a result of the conditioning treatment. She's looking on the bright side of things though: she's happy that she won't need to shave her legs for a while.

The final drug they start just before transplant, Sirolimus, really isn't part of the conditioning regimen, it's used to help keep Elise's T-cells from fighting the donor's cell. Elise will take this drug for up to six months after the transplant. The direct side effects are "mild" and may include nausea, vomiting, joint pains, ... Because Sirolimus is an immunosupressant, the most likely risk associated with it is increased susceptibility to infections. Additionally, because it suppresses the immune system there is the rare chance of developing lymphoma or other cancer.

Post-transplant

Following transplant there are two main risks: infection and graft-vs-host-disease (GVHD). Infections result from the fact that the immune system has been seriously knocked down and then continues to be suppressed with medications so that the donors cells can engraft and become well established. The infections can come from just about anything, even things that normally wouldn't make anyone sick. During the first several weeks post transplant, Elise will be in isolation. After the donors cells start to engraft she will gradually be able to come out of isolation and eventually be discharged to live with us in an apartment in the local area. She'll still need to be extremely cautious (wear a mask, avoid public places, wash her hands continuously, etc). She'll also be taking antiviral and antifungal medications to help defend against those types of infections.

GVHD is when the body and the donors T-lymphocytes attack each other. It occurs in about 30% of transplant patients and can range from mild to severe, even fatal. It may be as mild as a skin rash that doesn't require treatment to liver and kidney damage, although the latter are more rare. Depending on the situation, they use a variety of medications to treat acute GVHD.

Another infection that may occur is cytomegalovirus (CMV). While there are innumerable potential infectious agents, this one deserves special mention because it was a serious problem in the earlier days of transplants. It can still be a problem, but they screen continuously for it post-transplant and are better prepared to treat it if it occurs. In fact it's so prevalent in humans that they actually screen for it before the transplant in both the donor and recipient and try to match donors to recipients with this as a factor when possible.

Long-term

GVHD is broken into "acute" and "chronic". The chronic GVHD can develop later and continue for long periods. The risk of chronic GVHD is on the order of 5-20%. There are treatments that are used, but these treatments aren't always successful.

Another long term risk is graft failure. Rarely this can happen quite some time after transplant. If this occurs, then Elise's own immune system should take over. But in that case she'll still have CGD and all the problems that we're trying to cure with the BMT.

Finally, the consent paper work says: "Because marrow transplant affects the entire body, a comprehensive list of all side effects that have ever been encountered after marrow transplant cannot be made...Conventional allogeneic transplantation carries about a 40% chance of death from complications of the transplant. Although we have good reason to believe that the nonmyeloablative transplants confer a much-reduced death rate, the procedure nonetheless carries some risk..."

After all the discussions and reading, as best I can tell, Elise has about a 85-95% chance of a positive outcome. I'm trying hard to focus on the probability of a beautiful bloom.

Pantheon

"Now and then it's good to pause in our pursuit of happiness and just be happy." - Guillaume Apollinaire

We're all trying to close out the things we need to do before we leave for NIH. Elise has a project for her history class due in another week. They could choose between lots of different things, but for some reason she chose to build a 3D model of the Pantheon. She made some pretty spectacular drawings of it and for some reason she knows quite a bit about it (I suspect the Percy Jackson books). So this weekend was filled with several hours of scaling mathematics lessons (if this picture measures 3 inches and the styrofoam dome is 8 inches then this wall should be how tall?), cutting foam board, and trying not to get burned with a hot glue gun (which I found she has lots of experience with from arts & crafts class). I think it turned out nice and I found out Elise is pretty good with a hot glue gun (and she's also pretty innovative).

Elise also got her hair cut really short this weekend. With the chemo and radiation conditioning she'll lose her hair so she decided to get it cut short to start with. She wanted a Jennifer Lawrence cut and that's what she got. The stylist pony-tailed it up before the cut so Elise could donate her hair to a children's hairpiece organization (ala "Locks for Love"). This is her 3rd time donating her hair over the years. I think she was 5 and in Daisy scouts the first time.

We've got lots to do this week, and only one more weekend left to us before we have to leave, but we're knocking things off the todo list one at a time and I'm sure we'll be fine.

The Schedule

"The truth is you don't know what is going to happen tomorrow. Life is a crazy ride, and nothing is guaranteed." - Eminem

We received Elise's official schedule today. It's getting very real. More every day.

18 May: Return to NIH
19 May: Lots of tests and consults
20 May: Lots more tests and consults
21 May: Line placement and bone marrow sample (ouch)
22 May: Radiation consult
23 May: Ophthalmologist consult
24 May: nothing scheduled
25 May (D-12): Palifermin dose - helps reduce mouth sores
26 May (D-11): Palifermin dose
27 May (D-10): Palifermin dose
28 May (D-9): Campath dose - it's a chemotherapy agent used to deplete T-cells in prep for transplant
29 May (D-8): Campath dose
30 May (D-7): Campath dose
31 May (D-6): Campath dose
1 June (D-5): Campath dose
2 June (D-4): Busulfan dose - it's a chemotherapy agent used to lower the white blood cell count
3 June (D-3): Busulfan dose
4 June (D-2): 2x Total body irradiation
5 June (D-1): "Rest" and echocardiogram
6 June (D0): Cell infusion (i.e. the transplant)
7-9 June (D1-3): more Paliferiman doses (this period is supposed to be really uncomfortable)
10-19 June (D4-13): waiting for stem cells to engraft, and treating whatever pops up - this is a very risky period
20 June (D14): DHR/chimerism test to see if cells are starting to engraft
21-29 June (D15-23): more waiting and treating whatever pops up
30 June (D24): DHR/chimerism test to check engraftment process
6 July (D30): this is the earliest Elise could be released from the hospital
21 July (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
22 July - mid-Sept (D100): lots of trips to the hospital, maybe some rehospitalization if things flare up, but hopefully we'll be able to come home after D100