Tuesday, July 29, 2014

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.

Friday, July 25, 2014

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.

Thursday, July 24, 2014

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.

Tuesday, July 22, 2014

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.

Wednesday, July 16, 2014

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.

Monday, July 14, 2014

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.

Thursday, July 10, 2014

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.

Tuesday, July 8, 2014

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.

Sunday, July 6, 2014

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.

Saturday, July 5, 2014

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.

Thursday, July 3, 2014

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.

Wednesday, July 2, 2014

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.

Tuesday, July 1, 2014

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.