Dianniversary (D+186)

"God gave us the gift of life; it is up to us to give ourselves the gift of living well." - Voltaire

Elise made it to 6 months post-transplant this past weekend (her "dianniversary" according to Urban Dictionary). She's almost fully transitioned back into life as it was pretransplant. She's going to school and doing very well (an almost seamless transition thanks to the help she received from Ann at NIH). She's dancing 1 day each week and probably going to ramp back up to 3 days a week. And she's participating in Girl Scouts where she received the Silver Award in early December.

So things are going well but there are a few little nagging things that have required some attention.

She caught a cold around Thanksgiving. It passed quickly but it led to a cough that became "productive". The cough also led to some pain that was difficult to diagnose. The Drs seemed to settle in on soreness from the act of coughing (I'm sure there's a medical term for it). The soreness led to less deep breathing and possibly "atypical" pneumonia (aka walking pneumonia). It was borderline but they gave her a 5-day Zpack and the cough cleared almost immediately.

Following the watery eyes from the cold, she developed a stye in one of her eyes. We weren't sure what it was because the eye became quite swollen. After a visit to the opthamologist it seemed to initially resolve with hot compresses and antibiotic ointment. But then it jumped to the opposite eye and we spent the next couple weeks chasing it around from eye to eye and lower eyelid to upper eyelid. It seemed to get under control with the combination of oral antibiotics and antibiotic eyedrops.

The last thing will present some longer-term challenges. Based on some blood tests, it appears Elise does have Premature Ovarian Insufficiency (POI) or Premature Ovarian Failure (POF). From what I've read this almost always happens to women who undergo a BMT and is caused by the conditioning regimen. It is generally treated with some form of hormone replacement therapy that can be short or long term depending on the individual's response. Simple, but we are still trying to get in to see an Endocrinologist. At this point the earliest appointment we've been able to establish is late February. But I'm on the hunt for an earlier one.

If there's one thing I'd have done differently given 20/20 hindsight, I would have made an appointment date with an reproductive endocrinologist at the same time we were making arrangements for follow-up care at CHLA. As I mention, it seems that POI/POF is a near 100% thing and endocrinologists are in high demand. Waiting too long is not a great idea because from what I've read POI/POF can also impact recovery of weight, height and hair as well as lead to issues such as reduced bone density. So if you're reading this and going through a BMT yourself (or your child) bring this up with your Drs.

While these things may seem like major issues, they really aren't impacting Elise too much. She hasn't complained too much about any of them and just keeps moving forward. We'l get them all resolved eventually and in a years time we'll likely have forgotten them (except for this pesky blog).

We're all looking forward to Christmas Eve tomorrow and then Christmas Day. We're following tradition and having breakfast at Becky's sister's. Then, after digesting and maybe an episode of "The Christmas Story", the family will come over to our house for dinner. We'll follow all that eating with a gift exchange. But I know we've already gotten the best gift possible.

Thankful (D+144)

"There's no happier person than a truly thankful, content person." - Joyce Meyer

Elise and I made a quick visit to NIH for her routine "6 month" checkup. It's really only (!) been about 5 months since the transplant, but the upcoming holiday season made this the best time to visit.

Elise had a battery of tests: about 15 tubes of blood work; chest CT scan (looking for any evidence of infections); echo cardiogram; and a 24-hour Holter monitor. After that we met with the medical team. 

Everything continues to look good. Her blood counts are gradually recovering. She's gaining weight (although she has about 10 lbs to go to get back to where she was last spring). Her hair has started to become noticeable. And no signs of the dreaded GVHD.

The one thing they are going to look into further is whether her ovaries were damaged by the chemo and/or radiation conditioning therapy. We all knew going in that this was a possibility. They can't protect the ovaries during radiation therapy so they are totally exposed. And chemo can do all sorts of bad things to the body.

Elise hasn't had a menstrual cycle since June and she's been having hot flashes. The hot flashes may be caused by one of her meds, and the lack of a period was by design: they gave her a dose of Lupron to inhibit her cycle while her platelet, hemoglobin and red blood cell counts were suppressed post-transplant. At this point it should be kicking back in, although it's still in the range of expectations.

So they'll run some tests and wait and see. It could be a number of different things: a late restart after the Lupron; her low body weight; the ovaries "going to sleep" from the chemo (could take a year or more to "wake up"); or her ovaries could be damaged. If they are damaged then they'll put her on birth control pills to normalize her hormone levels which will restart her period.

Elise is just fine with not having a period and she wasn't real excited to hear discussion of working to restart it. I suppose other women probably feel the same way.

On a real positive note, they've decided that Elise can stop taking 3 of her medications. The first was ursodiol which she took to help prevent VOD, a rare but potentially nasty complication of chemo therapy. The next was metronidazole, an antibiotic that treats gut bacteria like c.diff. She'd been taking it prophylactically for quite a while due to her severe colitis. And lastly is prednisone, a steroid meant to manage the symptoms of colitis. She's been tapering off the prednisone for quite a while. It was a miracle drug when she had colitis, but she hasn't had any symptoms for several months and hopefully it's gone for good (her severe colitis is the main reason that drove the transplant).

Of course she'll need to take some meds for up to a year: sirolimus to help prevent GVHD; and acylovir and fluconazole to help ward off opportunistic infections that might pop up because of the immunosupressive action of the sirolimus. But eventually these too will go away. That will be an amazing day.

It's really hard to believe that a year ago almost to the day I was sitting in a room at NIH realizing that we'd need to go forward with a bone marrow transplant. Elise was having a colitis flare and the GI specialist had just finished a colonoscopy. In the little room they use to have private meetings, his prognosis wasn't good. Up until then we'd avoided discussion of a BMT because of the extreme risks, but we found ourselves boxed into a corner. After talking to Becky on the phone that night we started down the path the very next day. I sure am glad it's a year later and things have gone well. It's going to be an honest Thanksgiving celebration this year.

View of the Children's Inn at NIH

Getting in the Rhythm (D+121)

"The most effective way to do it, is to do it." - Amelia Earhart

We're all getting back into the swing of things and this week should sort of be the last step for the new normal as Becky joins the salaried workforce again. Till now she's been off work which has made getting Elise started back to school much easier since she can run errands, visit the school to give Elise meds, etc. I started back a couple weeks ago and it was almost like I woke up and the clock had advanced 5 months. Weird, but then my coworkers have been great and everyone has been patient while I try to dust off the cobwebs.

Elise's new normal is a school day without PE. There are at least 3 things to worry about: exposure to the sun might trigger GVHD; some of her meds make her sensitive to sunlight; and her platelet count is low so she'll bruise badly if she has a accident.

The transplant protocol Elise went through is meant to reduce the chances of GVHD, but it also means that she's exposed to the threat for a longer period. Most BMT patients are mostly out of the woods for "acute GVHD" by day 100. Elise will be watched for 6+ months. Fore Elise, the pretransplant conditioning drugs will stay in her system for about 6 months, so she needs to take sirolimus at least that long and probably longer to prevent "acute GVHD". After that, we'll be watching out for "chronic GVHD" which is a rarer and different beast.

We've started going to Children's Hospital Los Angeles (CHLA) once a week on Friday's for follow up care. It's a strange transition from NIH. First CHLA is targeted at children so the noise and activity level when you get off the elevator in the lobby is quite a bit higher than NIH. Secondly, CHLA does do research, but it's not a research hospital first. This means there are a lot more patients wandering about. Young patients. And generally mom and/or dad have more than the one in tow. The medical team and other staff are all nice and seem to know their stuff, but it's different and requires some mental adjustments on our part.

Another adjustment for us is the lab test rhythm. Sirolimus requires careful monitoring of the level in her blood and frequent adjustments in dosage. The blood tests are a problem for two reasons: 1) they must occur 24 hours after the last dose; 2) they can't be processed at most hospitals (including CHLA and NIH). We've had to plan a week ahead and try to give Elise her daily meds when we think her weekly blood test will be. Of course this means she needs them in the middle of the work and school day which is a huge hassle for all of us. The second problem means that we are limited in what labs we can use. CHLA (and NIH) send their tests out but they get them back in a few hours. Here in Ridgecrest (where our insurance will pay 100%) they send them to Outer Mongolia and it takes 3-5 days for results. Not exactly timely. We haven't quite got this part of the new routine worked out yet.

As for Elise's health, outwardly she's doing great. She asked to start dancing again this past week so we're letting her attend class once a week for now. And she's been doing things with friends (movies, etc). Her weight is very slowly beginning to rise. Her appetite still isn't huge, but weight gain, even if it is slow, is better than weight loss. And the hair is starting to be noticeable, at least to me.

Internally, many of Elise's blood levels are still very low. I'm unclear on exactly what we should be seeing but the doctors don't seem alarmed. A week ago it looked like she might need a transfusion because her hemoglobin level appeared low, but the next test came back and it had recovered enough to ward off the transfusion. Transfusions are somewhat normal for post-BMT patients and they've been surprised that Elise hasn't needed any since right after the transplant. But CHLA has different protocols and based on discussions with the staff it seems they are more likely to order a transfusion than NIH was, but so far Elise hasn't had one.

It's hard to believe but we've already scheduled Elise's 6 month checkup at NIH. It'll be more like 5 months but it's inside their acceptable window. Elise and I will travel back the weekend before Veteran's Day and visit the medical team for a 1 day checkup. Veterans Day is a holiday for Elise and I so that will limit the amount of time we're away from school/work.

As for me, I'm mostly back in the swing of things. I love being back in the desert and having access to the trails in the foothills around our house. I managed to get in a day hike in the Sierras after we got home and hope to squeeze in an overnighter before the winter weather makes the mountains inaccessible. On top of that I'm eyeing all the wood laying around my garage waiting to be turned into something.

Kearsarge Peak from Mount Gould, Golden Trout Lake in foreground

Party at the Bechtel's Saturday (D+104)

"We can only be said to be alive in those moments when our hearts are conscious of our treasures." - Thornton Wilder

We're hosting a "Welcome Back Elise" party at our house in Ridgecrest so you can see Elise and also to say Thank You to everyone that has been so supportive over the past many months.

What: Welcome Back Elise (very low key) Party

Where: The Bechtel's in RC (call or send me a message if you need the address) 

When: Saturday, 4 Oct 2014, 4pm to 6pm

All of Elise's friends, family and wide circle of supporters and well wishers are welcome. We'll have soda, beer and white wine on ice along with some light hors d'oeuvres. The pool will be open (weatherman says "Sunny and Hot") but the AC will be running indoors too. If you'd like something in particular feel free to bring it, but please no gifts as we ran out of Thank You notes a long time ago (you guys are great!) Oh, and our fridge broke while we were gone so don't bring anything that needs refrigeration (the new one arrives next Tuesday).

Now on to my blog update:

After driving 3080 miles of driving through 11 states in 7 days, we finally made it home to Ridgecrest on Tuesday (9/30/14). We saw a lot of the beauty of this great country and some really cool things along the way, but we're enormously thankful to be home.

Elise is feeling great. The minute we got into town she ran across the street to visit her friend Gina and then they went to a volleyball game! She's been very anxious to get back to school ("I feel like I'm ditching") so she started today instead of our plan to have her go back next Monday. The picture above is her "First Day of School" photo this year. She's kinda brought new meaning to "skinny jeans", but the weight should gradually come back along with the hair and eyebrows.

We are visiting Children's Hospital LA for the first of many weekly follow-up visits this Friday. Elise isn't completely out of the woods yet. Because of the type of transplant protocol she underwent, she's still open to "acute" graft vs host disease and will be for a few more months. This means that she's taking an immunosupressant to prevent GVHD, and this med means she's still more likely get opportunistic infections than the general population. So they need to watch her closely for a few more months. Hopefully by Christmas time (when the effects of the Campath wear off) she'll get to taper back on the weekly visits and the meds.

So we're trying to work our way back into the routine here at home. Elise is back to school, I'll start work again on Monday, and Becky goes back in a couple weeks. I'll try to provide some periodic updates but they will be few an far between unless something comes up wrt Elise's transplant.

Thank you all for your support, whether it was a smile, kind word, one of a seemingly endless stream of cheerful cards, mowing the lawn, or the truly nasty task of cleaning the rotting food out of our freezer when it died while we were gone. All these were heart felt gifts that made this an easier process for us to go through and we are truly grateful!

So Long, Farewell, Auf wiedersehen, Goodbye (D+95)

The "Day 100" Blood Draw

“Nothing behind me, everything ahead of me, as is ever so on the road.” - Jack Kerouac, On the Road

Elise had her "last" visit and tests at NIH yesterday and she's been released to leave the local area. We're packing up today and hope to hit the road tomorrow for the long drive back to Ridgecrest. We plan to stop several places along the way and visit family and friends.

Of course there are some lingering things that will bear watching in the coming months. Elise will have weekly visits with the transplant Drs at Childrens Hospital LA who will be our "local" transplant team. They will be closely monitoring the recovery of her immune system. And we'll return to NIH for short visits at 6, 12 and 24 month post-transplant. I'm a bit nervous because her blood test results look "odd" to me, but the medical team tried real hard yesterday to make me comfortable that "it's all normal". Her WBC counts were a little low so they gave her a GCSF injection and gave us some doses to take along with us "just in case".

We had the "release" training and it made Elise upset. Since she'll continue to take Sirolimus for many months to help prevent GVHD, her immune system will continue to be somewhat suppressed. As a result she has to continue to be careful about many things. For starters she is more susceptible to viral infections, which she never was before with CGD. The one that she wasn't prepared for was "no contact with farmyard animals including horses". She had plans to start horseback riding when she got home. This is a long running dream of hers: once when she was little she asked me if I could "call up the workers" so that they could come build a stable in our back yard. In any case, all these precautions will go away some time in the next 9 mo when she stops taking Sirolimus.

We've had many talks about the return to school and I'm not sure how this is going to go. She doesn't want to be singled out in any way (good or bad), but we've tried to tell her that people will be naturally curious about what's up. After all she's lost her hair, eyebrows, and quite a bit of weight. And without a doubt there will be someone who will say something inappropriate (she's in middle school - not exactly the bastion of carefully considered comments).  We've tried to convince her that the best approach is to hit it head on (e.g. "I had a bone marrow transplant, but I'm well now and my hair will grow back"), but she just wants to be a normal kid. She's tough though and I'm sure she'll get through it.

So, assuming the movers show up today and NIH doesn't call us with a "we have some bad news" call, we'll hit the road in the morning and be back in Ridgecrest around 1 Oct after seeing many parts of the US we've never visited.

A few members of Elise's medical team at her release visit.

Nearing the End of the Beginning (D+90)

"There will come a time when you believe everything is finished. Yet that will be the beginning." - Louis L'Amour

Wow time is flying by. It's day 90 after transplant and all seems to be going very well. We've been told that if everything remains stable then Elise will be released to return home early next week which is a few days early! We're all real excited at the prospect of getting home.

There isn't much medically to report. They've tweaked some medication dosages based on the weekly tests she has, but everything seems to be going as the medical team would anticipate. Elise did start having the sniffles and a dry cough just about the same time as the D68 entrovirus hit the news, so they ran some tests and decided she just had a normal head cold. She's still a bit congested and coughing a little, but it only seemed to slow her down for a day.

One thing you might notice in the picture is that Elise started to lose her eyebrows. Chemo and radiation affect the fastest growing cells first. I guess the eyebrows grow more slowly. She hasn't completely lost them, but they are definitely much thinner. But they'll grow back just like her hair. The hair on her scalp is now light colored and about 1/4+ inch long. She's finally able to kid me about being bald without me being able to turn it around. I do still rub her head "for luck".

We've made arrangements with Children's Hospital LA for follow-on transplant care once we get home. Elise will need to see a transplant Dr weekly for a while and then it will scale back until we hit the magic 1 year mark. At 6 and 12 mo she'll need to come back to NIH for short visits. After that it's once per year until she hits the 5 year mark.

We're trying to make all the arrangements required to move out of our apartment. Most things are easy, but getting rid of the furniture has turned out to be more of a headache than I'd anticipated. Who knew that it would be so hard to get furniture picked up? But we couldn't expect everything to go smoothly.

Elise has been visiting with the teacher daily. They've been trying to get a little ahead on the math coursework so that she starts back to school even with her classmates. I'm not sure all the other classes will go as well (she hasn't been practicing the flute much at all), but then we asked them to concentrate on math since its so hard to catch up once you get behind.

Around the edges we've been trying to take in the local sites. We finally made it to the Bureau of Engraving and Printing and we hit an Art Fair in Alexandria last weekend. The weather has gotten really nice. Hopefully it's cooled off in Ridgecrest when we finally get there.

We're considering hosting a Welcome Home for Elise after we return, so if you're interested please keep watch for an announcement.

Time Passes Quickly (D+80)

"Time is a sort of river of passing events, and strong is its current; no sooner is a thing brought to sight than it is swept by and another takes its place, and this too will be swept away." - Marcus Aurelius

I realized I hadn't posted an update for a while. Guess I've been negligent...sorry.

It's already 80 days post transplant! I can hardly believe it. The bottom line is everything is going well. Elise's blood counts are good, but don't look as good as I'd expect, but I'm not the medical team. They assure me everything is going well. So I ask questions and get reassurances. At least it gives us something to talk about. Elise does have a rhinovirus (i.e. headcold) that she probably picked up on our trip, but the Drs have told us not to worry. It's not the EV-D68 virus in the news or influenza (they ran a test today), just a normal head cold that will pass.

Elise is down to once a week tests and visits with the medical team and gradually the list of medications she has to take are reducing as well. They have started tapering her prednisone dose although we don't think it'll get to zero for quite a while since her underlying colitis will take a while to heal (maybe a year). She'll likely be on several of the medications for a full year post transplant, but we'll see.

Today we actually discussed coming home with the team. They have a protocol for the 100-day release and we talked a few more details of what that would encompass. Mostly we talked about timing as we're actually at the point of making some plans. Elise is within 3 weeks of being released to come home. We've contacted Childrens Hospital LA to arrange follow-on care with their BMT team and I signed releases today to send all the medical records to Elise's Dr's at home.

Last week was a fun filled week. It was the anniversary of Becky's 29th birthday so we decided to go to Ocean City, MD for a couple days after her Tuesday medical visits. After Ocean City, we drove to Assateague Island to see the wild ponies (of "Misty of Chincoteague" fame). After that we went on to Williamsburg, VA to visit Colonial Williamsburg (Elise's 8th grade history covers early American history). We started the week with a visit to the White House that I'd arranged earlier.

I don't know how we're going to pack up everything we want to bring home, but I guess we got most of it here in suitcases on an airplane so it's all gotta fit in the Toyota - right? We're going to donate the furniture and housewares we bought to a charity that I contacted today. We also bought a rooftop cargo box for the car. And I've been telling Becky that she has to throw away something every time she buys something. I don't think this latter tactic is working.

It's Too Nice To Be DC In August (D+65)

"The secret of happiness is to count your blessings while others are adding up their troubles." - Unknown

Time is moving right along. We're now at transplant + 65 days! It's hard to believe. The last week was medically uneventful. Elise had a few appointments and lab work a few days, but nothing much to report. She's taking drug called Sirolimus which is an immunosupressant that is intended to help prevent graft vs host disease (GVHD). Getting the level of it in her blood just right is very important and we've been adjusting her dose a bit this past week, but other than that there hasn't been much.

One of the outward side effects of the palifermin (which was used to reduce the duration and intensity of mucositis) was a darkening and then peeling of odd patches of skin. It was almost like getting a sunburn. But in some off places (like the arm pits). The exfoliating seems to be mostly done now. It looked worse than I think it felt - she didn't much complain about it except just before peeling. But if you're ever going to need this med it's a side effect they didn't say much about.

Overall Elise is doing great. We've been taking walks and doing some tourist things. We had a great visit with friends in Haymarket, VA on Saturday. It rained a bunch on the way out there but the payoff was Sunday morning. When we woke up it was cool (60's) with patchy clouds. So we decided to do a walking tour of the major monuments in the national mall and tidal basin area on Sunday. It was an awesome day and our feet got a real workout.

This week holds more tests and appointments, but nothing significant is planned. If the schedule holds we've got about 5 weeks left here in the DC area. Becky's birthday is coming up so we've got a little trip planned to Ocean City. We're thinking about swinging south on the way home to hit Jamestown as a "field trip" since they're studying early US history in Elise's history class. We're also looking at other short trips to take advantage of being out here, but we've got to fit them around appointments, tests and school.

Just Keep Swimming (D+58)

“Take the first step in faith. You don’t have to see the whole staircase, just take the first step.” - Martin Luther King 

It's hard to believe were already at 58 days after Elise's stem cell transplant. She's made it a full week as an outpatient - Woo Hoo! Just six more to go and then we get to come home. During that time they'll be watching for infections, graft-vs-host-disease (GVHD) and VOD.

Things are going really well. Elise has blood tests at least once a week so they can track the recovery progress of her new immune system as well as monitor the levels of some of the medications they are giving her. All her medications are oral and that's so much better than multiple times a day IVs. All the signs so far have been positive.

She had a follow-up eye exam this week. After the chemo conditioning for transplant her eyes weren't focusing as well as a typical 13 year old. The Dr had said it was pretty typical, but that it would come back. And sure enough, she's back to 20/20. She proved it by reading "The Giver" in 2 days before seeing it in the theater this weekend.

NIH has a couple teachers on staff through the local school district and Elise has been working with one of them most of the summer. School started at home last week, so Elise "started" here as well (although we're waiting on the study guides from the teachers at Murray). We have her books and some informal guidance from her principal so she's started on that. We hope she doesn't get too far behind.

We've been trying to take advantage of the local area. We visited the Baltimore "Inner Harbor" area and spent some time at the National Aquarium that's located there. We also took a harbor cruise. Today we went to the National Museum of the American Indian and also the Air and Space Museum.

So we'll continue on with this routine for a while. Kinda boring, but that's definitely better than the alternative. Becky and I are taking advantage of the gym in our apartment complex and the weather has been nice in the evenings, so we've been able to go for walks and sometimes eat dinner at restaurants with outdoor seating which we both enjoy.

Halfway Home (D+50)

"Believe you can and you're halfway there." - Theodore Roosevelt

I can't quite believe it, but Elise is halfway through the "100 day" transplant process. For almost all patients, the first 100 days after transplant is when all the most important stuff happens. It's also the length of time we are supposed to stay in the area of NIH.

Elise was formally discharged AGAIN from inpatient status just before midnight on Friday. She finished the 14 day course of IV antibiotics that were required when her central veinous catheter became infected. She's doing great now, plus she has no more IV lines hanging out of her arms or chest. She was able to take the first bath without having to worry about keeping some body area dry. A very big deal!

I was a little worried because she's had some growing sinus congestion and she had a little dry cough on Friday morning. I was concerned she might have picked up a virus since she doesn't wear her mask as diligently as she could. [The medical jury is out on how much and when its required - some are very conservative and others less. Elise chooses to listen to the less conservative voices and then improvise.] The sniffles are minor, but so were the symptoms that turned out to be the start of a blood infection 2 weeks ago - so better safe than sorry. But they ran a test Friday and she didn't turn up positive for any of the typical viruses, so it's probably just allergies or the constant in/out from humidity to air conditioning.

In any case, to celebrate her discharge and completion of the IV antibiotics, everyone slept in. Kinda anticlimactic but when you have to be at the hospital for treatment starting at 11pm and then again at 7am the next morning for 2 weeks straight, then sleeping in is a celebration. After that wild partying, we went to the "Chinatown" area of DC, visited the Smithsonian American Art Museum, and then walked down to the National Gallery of Art where they are having an Andrew Wyeth exhibition (which was really cool). It was a really great day.

Going forward Elise will be seen at the outpatient clinic twice a week. She'll continue to have blood tests to make sure things are going well and they be poking and prodding her for other stuff I'm sure. There are medications levels that need to be watched closely but mostly in the first 100 days they will continue to watch for the big 3: infections, GVHD, and VOD. 

Elise will also start "real" school this week. The school district in Ridgecrest starts this week and Elise needs to keep up. We have all her books for this year and NIH has a school room and 2 teachers to handle this sort of situation. So the tentative plan is that Elise will visit the teacher for lessons a couple hours a day. We'll see how this goes and adjust as necessary.

We're planning some sightseeing day trips, but our leash is pretty short due to school and appointments, but I'm sure there will be good opportunities. Elise is excited about going to the Montgomery County Agricultural Fair this weekend. I just hope they have deep fried butter and chocolate dipped bacon...

Whos' Who In the Zoo (D+45)

"An optimist is someone who gets treed by a lion but enjoys the scenery." - Walter Winchell

I'm happy to report that very little has been happening. Elise is still getting IV antibiotics every 8 hours and this will continue through Friday. This is the follow-up to the S.Aureus blood infection she got from the venous access catheter she had that was used to draw blood, give meds, etc. The every 8 hours schedule is a significant hassle since it takes about 30 minutes to get to NIH (one way) and about 45-60 minutes to complete the IV infusion. so that leaves about 6 hours between infusions. Elise goes to bed about 12 or 12:30am and has to get up at 6am to make the 7am dose. She naps for a couple hours after the morning dos and Becky and I swap off the late and morning trip to NIH (I prefer mornings).

There have been other things going on. Elise has class most days for an hour. There is a teacher she meets with at NIH. That will transition to more time after school starts in a week. And today she needed to get her IV replaced. The technician on the wing tried first but couldn't accurately place the vein (ouch!) so we had to go to the VAD clinic where they use ultrasound imaging to direct the placement (ouch x 2).

Hopefully when the course of IV antibiotics are done we'll be able to transition to only once daily Monday and Thursday visits to NIH for labs and visits with the medical staff. We're crossing our fingers.

This past weekend it was overcast and cooler than normal on Sunday so after the morning IV we went to the zoo for a few hours. Then Cheesecake Factory for a late lunch (then to NIH for afternoon IV dessert). Elise needs to avoid the sun because some of the meds make her susceptible to sunburn, and also sunburn can trigger GVHD (or at least some literature says that).

In general Elise is doing well. She's eating well, gaining weight back, her energy is up, and her hair is clearly growing back (although that will take many months).

We're inside the 2 month to go mark and counting down.

An Apple 3 Times A Day? (D+39)

“An apple a day keeps the doctor away.” - Benjamin Franklin

Elise hasn't been officially discharged after the line infection incident, but she does get to come back to the apartment. However there are strings attached.

As I mentioned in my previous post, they removed her central line last Friday (D+35) and confirmed that it was infected with S.Aureus. They put her on some IV antibiotics which have cleared the infection and she's feeling great. But...she needs to stay on the IV antibiotics for 14 days following the line removal (ie last Friday). 

They tried to work out an antibiotics that would allow us to stay at the apartment and only come in when the infusion was scheduled. Initially they used a really strong antibiotic that was only required once every 24 hours. It would have been perfect except it started to elevate her liver enzymes significantly. So they've fallen back to a better tolerated med, but it's required 3x daily.

None of us, especially Elise, want to be at the hospital for the next week and a half, so we negotiated an IV schedule that will allow us to get some sleep between sessions. But it will mean 3 trips daily to NIH until the course of meds is done.

Elise was pretty upset with all the changes. She really wanted to get out of the hospital with no strings attached. But it's not to be.

The good news is that she's feeling great, eating great, and she's not showing any signs of an infection any longer. When we got home today she also had the surprise of a care package from friends at home. I'm not sure if she truly likes the big-eyed Ty plush animals, but she knows they creep me out so it was definitely a hit. Debra and Darla thanks for putting a smile on her face. Also all the arts and crafts items she's received are going to good use.

Float Like A Butterfly (D+35)

"If you even dream of beating me you'd better wake up and apologize." - Muhammad Ali

They managed to culture the bacteria that has infected Elise and it's Staphylococcus aureus which is a common bacteria on the skin and respiratory tract. They suspect that her central line was the point of infection so they decided to remove it. It's a minor surgical procedure to remove it and they wanted to do it yesterday but by the time they'd decided Elise had already eaten lunch, so they couldn't put her under until today.

So this morning they removed the suspect central line and put in a couple peripheral lines (in her wrists) so that she could continue to get IV antibiotics and get blood tests, etc. She was excited to get "happy juice" and the surgeon got a good laugh from things Elise said while she was going under. When she woke up Elise told me her hand wraps looked like a boxer's.

Her body temp continues to oscillate from normal to fever level and back again. And her liver function tests have crept back up again. Which all means she's a sick girl even if she's claiming to feel well. One clear way to tell she's sick is that she's napping and her hunger level is down.

So it sounds like Elise will stay in the hospital for a while until this infection clears. She isn't very happy about it even though we'd warned her this sort of thing was likely. It could have become very serious quickly and we're all real thankful we took her in when we did.

So Becky and I are back to the swapping nights at the hospital routine. Elise got another transplant room and its the mirror image of the one she was in before, so we're doing everything backwards. Thank God there is enough light that we don't end up in the hallway during the late night bathroom trips.

Paging Dr. House (D+34)

""We treat it. If she gets better we know that we're right." - Dr House, character from the series "House"

I have a long history of feeling too good about things. I should know by now that if my happy meter rises above a certain point then the universe is going to balance it out somehow. In this case, Elise is back in the hospital.

We'd been off to a good start out of the hospital, but then she woke up Wednesday morning with significant pain in her back like a muscle cramp. She was a little warm and the thermometer registered a slight rise in temp but nothing approaching the "call the team" level we'd been briefed on.  I gave her some Tylenol, rubbed her back for a while and she went back to sleep.

About 3 cups of coffee and some mindless web surfing later (for me), Elise woke up again nauseous, a little dizzy and with a slight headache. Still no significant fever and the back pain was gone, but we called the hospital anyhow and headed to the NIH Pediatric clinic to have her checked over.

They checked her vitals and the only unusual thing was a significantly elevated heart rate. After repeating the symptoms 10+ times to a steady parade of medical personnel, they drew blood, put Elise on IV fluids and sent us to the day hospital while they all conferred. Once in the day hospital they started broad spectrum antibiotics and continued the fluids.

Eventually they decided to readmit Elise to continue to the IV antibiotics while they waited for the blood cultures. By the time they'd decided this she was feeling fine and, of course, wasn't very happy about being back in the hospital.

Becky volunteered for the first night shift (not even a paper, scissors, rock contest!). She texted me saying one of the Drs had dropped by and said the preliminary culture indicated a bacteria and that the IV antibiotics ought to cover it. We don't know much more than that, but the Hickman catheter is a likely point of entry for bacteria and such. We should hear more today. 

Elise is obviously feeling well because she's texted me a McDonalds food order. A good sign from lots of different aspects.

Forecast is Hot and Sweaty (D+32)

"When eating an elephant take one bite at a time." - Creighton Abrams

They did formally discharge Elise yesterday from inpatient status. She's actually doing well enough that they are trying a Monday and Thursday outpatient check in instead of the everyday we'd expected to hear. So if things continue to go well she'll need to get blood work on Monday mornings at 7:30 am and Thursdays at 9 am. If there are any other appointments then they'll schedule them then.

We've coordinated with the tutor and she'll meet with Elise twice a week until school starts and then we'll transition to a 2 hour per day routine.

We did get a long talk about planning to stay until D+100. They said we'd really be getting antsy by D+80 but that we really do need to stick around because their experience shows that medical issues do arise.

Elise is doing well enough that I think we're all antsy now. Not sure what we're going to be like at D+80 or D+100!

As for medical stuff the ophthalmologist said Elise's vision blurriness probably isn't coming from any permanent physiological changes to her eyes. Probably just a short term reaction to the conditioning process. Chemo therapy can apparently affect the control of focusing much like happens as we age. So we bought Elise some readers for the short term and she'll get checked again in a few weeks.

Her blood levels continue to look good and her liver function continues to improve (she had elevated liver function counts on her recent blood tests).

Today we went to the National Harbor area for a while. It was pretty steamy but mostly overcast (which is good for Elise since she's sensitive to the sun for the next several months). We walked around and had lunch at a shady outdoor terrace. It was pretty steamy but I reminded Becky that we wouldn't even consider eating outdoors at noon in Ridgecrest during July, so it's all relative.

As you can see from the picture above, Elise's appetite is returning. She still has some issues with lack of certain types of taste (the taste of sweets isn't very strong), but she's increasingly interested in eating rather than us having to remind her all the time.

Escape from NIH (D+26)

"There is nothing like staying at home for real comfort." - Jane Austen

Elise continues to do well and they have let her leave the hospital and start spending the nights at our apartment in Rockville. Yeah! This is a little earlier than we'd anticipated - they'd told us it would be 30-45 days after the transplant and this is 26. So I take that as a good sign. We're all very happy about being back together as a family unit.

She's not officially discharged yet, rather she's on a pass. The lead Dr was out today so the team didn't want to make the discharge call, but they also didn't want to keep her in. So the compromise was to let her out for the weekend on pass and then if things go well she'll be discharged to outpatient status on Monday.

But we brought some lovely parting gifts back to the apartment with us: lots of medicines. You don't really notice when the nurse brings them in but when you've got to dole them out and keep track of them it sure seems like a lot. The first thing in the morning is the worst, she gets 7 different meds, a total of 10 tablets/capsules. This should taper off a bit in the next few weeks.

We'll be making daily trips back to NIH. They still need to get some of the medication levels stabilized and they are watching a few other things as well. Her liver function tests are elevated which is likely from the IV nutrition that they just discontinued yesterday, but its something that needs to be watched closely. And her ANC dropped today which could be a normal variation (it's still above the desired threshold for this point in time).  Finally, she needs to visit the tutor. This will be particularly important when the school year starts again in August. Right now she's doing math review to stay up to snuff.

Elise is going to see the ophthalmologist tomorrow because she's complained about "blurry" vision. She says she can't read because of it. It may be a side effect of the conditioning process. They did a good baseline on her before they started the process so they'll be better able to tell what's going on.

Despite these things, we're all very happy to be together in our home, even if it is temporary.

There's No Place Like Home (D+23)

"The ache for home lives in all of us, the safe place where we can go as we are and not be questioned." - Maya Angelou

Elise's condition continues to improve rapidly. Her absolute neutrophil count (ANC) continues to climb and passed into the "normal" range on Sunday morning's lab results! This is an important marker that they watch closely because it's a strong indicator of her ability to fight off infections. She's now able to leave her room and on Saturday we got a pass to go to the movies and yesterday we visited the apartment for most of the afternoon. Elise and I both watched perplexed (wir sprechen kein Futbol) as Germany and Argentina battled for the world cup.

But she's still in the "inpatient" status meaning she has to stay overnight at the hospital. There are still some immediate things that are being watched/worked. She needs to transition off the IV nutrition and back into the mode of feeding herself for all her calorie needs. Her weight is down about 10 lbs since she started the journey, but it seems to have bottomed out and is gradually climbing again. She has very little sense of taste and some foods she used to like don't taste good right now (chocolate doesn't taste good - say it isn't so!) And the IV nutrition dulls her sense of hunger. With those two combined it's hard for her to feel like eating, but she's working on it.

The GI problems she's really suffered with seem to be on the mend. She doesn't have pain anymore. In fact they've completely removed the morphine pump, both basal rate and PCA (the on-demand button). Now they'll just give it to her IV if she needs it, which she hasn't over the past few days. On the GI front, the better news is that the frequency of needing to use the bathroom has significantly dropped off. The urgency is still there, but I'd say frequency is back down to pre-hospital status. Of course pre-hospital status wasn't good given that she had colitis, but the current situation is way better than a week or even a few days ago. If she wasn't in a hospital (where they wake you up to see if you're sleeping okay), she might even sleep through the night.

The lagging marker is the platelet count. Platelets help your blood clot when you bleed. I'm told they are one of the last to recover. This count seems to be on the rise. Her platelet level is and has been high enough to prevent bleeding for quite a while. She only required one transfusion after the transplant when we'd expected many more. From what I've read there is a strong correlation between long term transplant success and the timely recovery of the platelet levels. The magic number is 50 within 30-60 days post transplant. Elise's counts rose into the 40's yesterday, so that's looking good.

The Drs are trying to stabilize the level of the immunosuppressant drug sirolimus in her blood stream. The use of a immunosuppressant is counter intuitive. It's used to prevent graft vs host disease (GVHD), essentially helping to prevent rejection of the transplant. Sirolimus dampens the activation of T Cells which reduces the body's immune response. Sirolimus is very hard to get leveled out so they take a blood sample each day and adjust the dose. She'll be taking this med for a long time, so getting the dosage leveled out is important if you don't want to visit the hospital every day. It seems like they are getting closer to the right level for Elise as the day to day variation seems to be narrowing down.

Now that Elise is feeling much better she's starting to get lonesome for the companionship of other kids. There aren't many in the hospital (a good thing!)We'll have to figure out how to counter that as we've still got a couple months here in MD before we can come home at day D+100.

So this week we'll be trying to get Elise released to outpatient status while continuing to watch for GVHD to rear its ugly head.

Thanks for the continued cards and letters. Elise enjoys them, even more so now that she's less distracted with medical complications. Being a teen, I think she like the text messages just as much.

Outside the Four Walls (D+20)

“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.” -  J.R.R. Tolkien, The Lord of the Rings

The past couple of days have shown great progress. Last night was my "night off" and when I returned to the hospital today Elise's room was vacant. The ubiquitous IV pole was still there but no Becky and no Elise. I would have thought she was out for tests except the IV pole was there and she'd normally just drag that along wherever she was going.

As it turns out, Elise's absolute neutrophil count (ANC) was up to 850 this morning and they said she could leave the room if she took some precautions. So they unhooked her temporarily and Becky and Elise decided to take a walk around the outside of the hospital which is a pretty good walk. I caught up with them near the entrance after they'd finished the loop. Elise was happy to get out of the room (but she should have had her mask on in the picture). Apparently she was also joking with the PA about catching the Metro to escape.

She said she'd decided to get up and out of bed today and she held to that. It was a real nice change and an indication that she's feeling much better. She even ate a bit more today.

She's still having some GI issues and her skin on her chest and neck is irritated from something (could be a lot of different things). She also had some nausea today but Becky thinks its because they've switched to mostly oral meds (vs IV) and Elise has an empty stomach. Needless to say everyone is keeping a close watch as both the GI and the skin issues could be graft vs host disease (GVHD) and that's the next concern, but they could also be a lot of other things too.

Her pain is almost gone. She's down to zero basal pain killers (ie no constant drip of painkillers), but still has the "on demand" ability if she needs it. I don't think she's used it much if any today, but they want to keep it hooked up for another day or so because if they go to the normal approach then they have to get it authorized and delivered from the pharmacy each time (which can be a 45-60 minute delay).

At the end of the day Elise wanted to go for another walk outside, but it started raining so we walked the hallways and then sat on a bench outside and watched the rain for a while.

Things are getting better each day.

Curb Your Enthusiasm (D+18)

"If all difficulties were known at the outset of a long journey, most of us would never start out at all." - Dan Rather

Things are slowly moving in a positive direction. Since the addition of the sucralfate into the medication lineup Elise seems to be doing much better. The lead Dr came by today and said that Elise's blood counts continue to climb as they'd like to see. If things continue in a positive direction then Elise could be transition from inpatient to outpatient possibly as early as the end of next week! There's a bunch of stuff that needs to happen for that to occur so I won't hold my breath, but it was good to hear her say it.

They've tapered the painkillers quite a bit and may remove the continuous drip in the next day or so. And they also plan to transition from IV meds to oral meds in the next few days since she can swallow again, although she still has some throat pain. And they're going to start tapering off some of the meds all together. One piece of good news from the GI Dr, apparently Elise is the poster child for good liver function. She said normally the liver would start showing signs of stress from all the meds, but she said  Elise's liver numbers are looking really good. I guess that's something.

On the throat front, she's still getting most of her nutrients via IV but we're trying to transition back to normal foods. It's going to take a while mostly because her taste buds are working quite right yet. Foods she'd normally like aren't appealing. This will just take some time.

Tomorrow she's starting back in with the tutor and maybe rec therapy as well. We'd called this off while she was feeling so bad, but she's alert and I think a little bored so we'll fill some of her days. It will be nice when she can leave the room (and we turn off the Animal Planet).

I'm happy to say things are going much better than this time last week, and we're hoping to say the same thing next week.

Rootbeer Anyone? (D+16)

"A smile is a curve that sets everything straight." - Phyllis Diller

I got a smile today and Elise asked for some popcorn and a rootbeer. Some definite signs of improvement.

The sucralfate seems to be doing the job with the proctitis (I haven't heard the Drs call it this but it seems to describe the symptoms really well) and her pain in the posterior is significantly diminished. She's still spending a lot of time in the bathroom, but it's not accompanied by pain in the 7-9 level. She says more like 2-3 which is relatively great. She also says her mouth isn't painful anymore except when she has to take the larger capsules. It's possible that they'll start tapering some of the meds this week and she may be able to transition back to oral (vs IV on some). She'll be taking some of the meds for months.

She's still getting her nutrients via IV, but if the mouth gets better we should be able to transition back to solids this week.

It seems her blood counts have sort of plateaued but according to the infectious disease Dr they are high enough to ward off many of the opportunistic infections or at least hold them at bay while they pump her full of antibiotics and stuff. Hopefully they'll start to climb again this week. Typically it would take at least a couple more weeks (till D+30) till they're high enough to transition to outpatient status.

So some progress and improvement. Keep the positive thoughts and prayers headed in this direction.

Party Girl (D+15)

"There was never a child so lovely but his mother was glad to get him to sleep." - Ralph Waldo Emerson

Ups and downs. It seems this process isn't a steady climb but a frustrating and exhausting series of peaks and valleys.

The 4th of July came around and it seemed like things were looking up. Elise's ANC was up to 600 (which is unbelievable, and was ultimately short lived) and she seemed to be feeling pretty good. She'd gotten some sleep the night before and took a nap during the day. Her pain level seemed to be dropping and the mucositis seems to be easing (ask me the spitoon joke sometime - it was unfortunately appropriate but made Becky and I laugh and gag for a while).

Of course Becky and I have cautioned ourselves that there will be good days and bad.

So the night of the 4th was pretty tough. Things were going along OK and then she started to have GI problems. These led to another all painful almost all nighter. I was delirious by about 4:30AM and couldn't keep track of things, so I can only imagine what Elise was feeling like. She did managed to get a couple hours of sleep before the sun came up.

She's dealing with a situation like what happens the day after eating an entire jar or habanaro peppers. Only image that happening when you're already raw from a week of diarrhea. Sorry if this is too graphic, but it's about the best description I can think of. It didn't help that the worst of it happened when they'd disconnected her pain meds to give her intraveneous feeding (she has too many things hooked up and so they need to swap out what she'd getting at any given time).

Needless to say it was a long night and even though we were awake we missed the fireworks.

During the day she got some sleep and they finally convinced her to try an experimental treatment. It's something they've used for people with ulcers that can't handle the typical treatments. The GI Dr said it was "like clay" that coats the insides. They've been thinking about how to deliver it for days and finally came up with a solution. I wasn't there (it's my turn to sleep tonight) but Becky said it's gone well. Becky said Elise had reported her pain level as a 1, which is almost incomprehensible given the past week or so. So I'm hoping she gets some sleep tonight. She needs it.

If we can get past the GI issues things are looking pretty good. Elise's blood counts are rising. And she hasn't lost as much weight as I would have guessed. So if she can string together several good days then they might start talking about letting her out of isolation.

There are definitely good signs even on the worst of days. For example, she hasn't run a fever in a couple days. And the few oral meds she has to take (most are available as IV) are going down without tears now. So we remain very hopeful.

Most importantly for me, she's been able to get some sleep. The lack of sleep has been hard for Becky and I and we've gotten to switch off, I really can't even imagine Elise's state of mind.

Houston We Have Liftoff (D+13)

"Take the first step in faith. You don't have to see the whole staircase, just take the first step." - Martin Luther King, Jr.

Elise had a real rough night last night. I was thinking it would be OK because the afternoon had been relatively calm, but it wasn't to be. I was stayed at the apartment and Becky stayed with Elise and they "pulled an all nighter" (as Becky put it). Apparently Elise had continuous bowel problems and severe pain. They were up all night. So much for the positive tone of my post last night...

When I arrived they'd just dropped off the DHR results from the day before. Elise and Becky looked exhausted but happy. The result showed that the donor's stem cells are engrafting in Elise's bone marrow and producing neutrophils! Exactly what the BMT process is all about.

So we celebrated a little while they changed some of Elise's IV meds, and Elise toasted with a drink of contrast dye for a CT scan she was scheduled to have at 1130. We know how to party! Becky headed back to the apartment to catch some Z's so she could party again tonight, because, and I know you're not going to believe it, I'm apparently not as compassionate as Becky at 3:30am. Shocking!

So I pulled the day shift today. Elise had a CT scan which was an adventure because they couldn't decide what kind of dye to use. They are trying to figure out why she's having GI issues. After the CT scan I spoke with a couple of her Drs and they basically shrugged their shoulders and said "There's nothing to see." They think its just part of the engraftment/mucositis process which is a good thing because it means its probably not something serious (knock on wood).

But the mucositis is still a significant problem. Elise isn't taking in many calories so they plan to start  Parenteral Nutrition (TPN) tomorrow which is essential providing nutrients via IV. They try to avoid this as there can be problems, but the most significant issues Elise is already dealing with: having an IV and also being attached to an IV for long periods of time. She's been on an IV drip for almost 2 weeks solid, so it's not a huge deal and if she can get some nutrients thats a good thing. They hope its only for a short period until her WBC count comes up higher, maybe a few days to a week.

We're real happy about the DHR results. Now we just need to plow through the other issues one step at a time.

PS Gotta love "the look" as Grand Dad Cowan calls it.

Moving Forward (D+12)

"March on. Do not tarry. To go forward is to move toward perfection. March on, and fear not the thorns, or the sharp stones on life's path." - Khalil Gibran

Last night was my turn to spend with Elise. As you could tell from the D+11 post it was a tough day and I wasn't sure how the night would go. I anticipated more of the same. But Elise surprised me.

They've added so many different IV meds and they take so long to administer that we didn't turn off the lights in the room till about 11pm. She was actually doing very well so I hoped she'd get some sleep which she did. She managed to get a few 1-2 hours stretches of sleep during the night. It's difficult between the need to go to the bathroom and the frequent night time vital checks and medication administrations. But overall it was a good night.

Unfortunately, the morning didn't go so well. The intense spike of pain she'd experienced the past couple days came back to visit for and hour or so. But it passed, and eventually they decided she could use a local anesthetic to help the spike in pain rather than a higher dose of morphine. This seems to be helping and overall I'd say the day went better than the last few.

The pain management Dr came by and went over the pain med administration. It's all computerized and they can see when Elise requests it via the Patient Controlled Analgesic button. Based on their data he thought things were getting better because Elise only requested 1/2 the meds she had the day before. Elise and I both agreed with him. So if they can manage the localized pain in her posterior then things should get significantly better. We should know if this has worked out tomorrow.

As I mentioned they are changing up her meds to make sure they get good coverage and keep any lurking infections at bay. None of the cultures have come back positive so far, so that's a good sign. And today she didn't run a fever all day - another good sign.

The lead Dr came by in the early afternoon and said Elise's white blood cell count was up for the 3rd day in a row. I'm not sure about the units, but it was 0.38 today, more than double the day before. This is a real good sign, good enough that they decided to run a DHR test which would show definitively whether engraftment of the donor's cells was underway (this test is a somewhat unique signal for conditions like CGD - it doesn't work for say BMTs to treat leukemia). The test is specialized, it's not one you just order up on a whim. This was a day or two earlier than scheduled which I took as a good sign. They had discussed putting it off until after the weekend because the normal day to run it would have been Friday, but it will be a holiday (4th of July). Unfortunately the results didn't come back before everyone left for the day. So we won't know till tomorrow.

The most accurate sign that Elise is doing better wasn't technical at all though. First she was walking around the room for a little while balancing a small "Toothless" figure (from How to Train Your Dragon) on her head with a big smile on her face. Next, I found her checking out the way her new haircut looked in the mirror. She hadn't cared much in the past few days. Becky has her own signal she's looking for, but I won't give that away.

So while there were some rocky parts today, in general I'd say things were better on the whole than the past couple days. Hopefully this will become a trend. But I know that, even if things go perfectly, there are still some rough patches still ahead. And I'm told nothing ever goes perfectly. For example even if things go really well, when the white cells grow back in earnest they say she'll have some issues because they'll try to mount an immune response to the damage in her mucosal system. But if these are steps towards the cure, we'll deal with them. Elise is one tough young lady.

Thanks to everyone for the cards, letters and gifts. Elise likes reading what people have to say even though she's a bit embarrassed by the attention. We've been creating a wall covered with cards after they are read. It's a lot nicer to look at that the white hospital walls.

These Go to Eleven (D+11)

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." - Khalil Gibran

The past couple days have been real difficult. The mucositis that results from the conditioning therapy has continued unabated. In fact it's grown worse in some ways. Elise has spent the majority of the past 72 hours on the toilet. The mucosal cells from her mouth all the way through her GI tract are sloughing off. This causes severe pain in her mouth, throat and bottom. We thought they'd gotten a handle on the pain with meds, but it didn't last long. Yesterday she was completely miserable. I've never seen her wimper from pain before and its was heart wrenching.

She got some small amount of relief last night, and got a little sleep, but it was short lived. This afternoon she had some terrible bouts that she reported as 9.9 out of 10 level pain.

As I write this though (10:15pm) she seems to be relatively comfortable. I hope it continues through the night. She could sure use a decent night.

She had some real odd abrasion/rashes that we couldn't figure out. One popped up suddenly in the middle of the night Sunday and it was screaming painful (is that a 8 or a 9?) I couldn't figure out where they came from. They cultured them like they do everything that looks odd, but nothing popped. Finally the infectious disease Dr dropped in and said he thought they were radiation burns. I looked them up on the web and sure enough they fit the pictures and description to a T. They all seem to be nicely on the mend as fast as they popped up which is good.

During her marathon bathroom sessions she's been "harvesting" hair from her scalp. The conditioning regimin makes it fall out. Today enough was gone that we decided to shave it off. It was so patchy that she looked more pathetic with it than without it. So I got the pleasure of giving my daughter a Signourny Weaver cut (think "Aliens"). She actually looks pretty good in it. She doesn't seem to be bothered by it, but it's been something she's been expecting for almost 6 months now. My barbering job isn't the best so we'll need to even it out when she is having less pain, but it's good enough for now.

We heard some good news this evening. Her white blood cell counts are starting to rise. They are still almost zero but they've come off of zero and are trending up. That's a great sign and the med team seems to be real encouraged. There's a long road ahead, but we'll take any and all positive signs right now.

I thought the Spinal Tap reference ("These go to eleven") was appropriate since Elise was starting to run out of room on the 10 point pain scale.