Day 25 - Faye's pain and nausea go up and down but it's getting a tiny bit better every day. Steve took her to the hospital today for CBC and an Pentamidine infusion which is anti-viral/pneumonia medicine. The Pentamidine is powerful and causes extreme nausea and discomfort - it is ironic that so many of these medicines make you sick. 

Great news, Faye is officially off of TPN but will keep the Broviac until blood counts hold steady on their own.  We will go in Thursday morning for a consultation on the additional radiation and chemotherapy that will follow.  Ugh.  Still fighting the good fight knocking on wood and crossing fingers and toes that none of us get a bug or virus for the next three months (or more!).  ~L

Day 19  --  We had a busy day yesterday packing and going home (yahoo!).  A home health delivery guy came in the afternoon and dropped off six large cardboard boxes of supplies, then a nurse came in the evening and spent almost three hours reviewing the IV/TPN Protocol, she was a gem but still I wished she would leave already.  She's coming back this evening to review everything one more time before leaving us on our own...  Faye did not get a pole but a backpack with a pump that holds her IV fluids - and dang it we may have left the hospital but the beeping pumps have followed us home(!).  Faye slept through the night but had her usual icky/nauseous episode this morning, then fell back to sleep once the meds kicked back in.  Still not much in the way of 'food by mouth' a nibble here or there which sometimes stays down.  ANC and wbc have been erratic as they ease Faye from the GCSF (a medicine that stimulates bone marrow).  When her counts stay relatively steady on their own they will look into removing the Broviac.  In the mean time it's a lot of work flushing it daily, keeping it clean and changing the dressing.  We put up a dry erase board and dug out the old Monday to Sunday pill box to try to help keep track of Faye's meds - it is still very confusing though.  Faye's first clinic visit is tomorrow morning and I'm actually relieved they'll be keeping close track of her progress.  The count down now is to get rid of TPN, then the Broviac, then day +100 when more of the restrictions should be lifted and Faye can possibly start back to school, go to restaurants, movies, malls, etc.  She will have to wait til next year to catch up on corn mazes and pumpkin patches!  ~L

Day +16  --  holy cow ANC today is 7056!  They are processing orders for discharge on Monday afternoon.  Steve, Zoe and Lydia are home scouring and bleaching the house and cars.  We are throwing out our one and only houseplant (ficus tree) and trying to figure out how to keep Domino off of, and away from, Faye which will be tough duty as those two are buddies and no doubt Domino is very Faye deprived about now. 

Faye still has not eaten and will be on TPN, the IV nutrition bag, at least another week so a home care team will bring one of those lovely 'trees' that they hang IV stuff from to our home, and train us on all things TPN.  So far this makes 7 training classes (3 pre-transplant, 4 for discharge).

No parties, movies, restaurants, malls... no pumpkin patches... she can walk in a park but away from people, mask on at all times she's out of the house...  car windows must stay rolled up and no open vents... food restrictions...yada, yada, yada - the latest slideshow had 47 slides and accompanying 3-ring binder.  The meds and personal care routines continue.... and outpatient visits and radiation will soon begin. Exhausting.  But still, still can't wait to be home.  ~L

Day +14 -- Two weeks post transplant, three weeks in the hospital.  ANC and WBC went up a lot yesterday (1836 and 3.4) but not by much more today (1849 and 3.4) still heading in the right direction.  Now if we can get Faye to eat we will be heading in the home direction! We just had our 'discharge' class, it took an hour and a half to go over all of the restrictions and instruction.  It will be pretty scary and exhausting for a while but we can't wait to get out of here. ~L

Day +12  --  fantastic news  -  ANC is 644, WBC 1.8!!!  Faye still de-saturates at night (oxygen) and is uncomfortable as they are easing her off of the morphine but we've scheduled our 'discharge class' with the head of BMT for Thursday afternoon... We may be home as early as this weekend.  Can't wait, cause there's no place like home. ~L

Day +11  -- ANC is 540 and WBC is .8!  The Doctors just left and they are very impressed with Faye's progress.  She will have to stay above 500 for three days in a row before discharge.  They will start decreasing her morphine and oxygen today, and encourage food by mouth starting tomorrow.  Holy moly and hallelujah!  ~L

Day +10 --  ANC is 199, WBC is .4.... whoo hoo right!? do we dare to call it a 'trend'!?  Not according to the Dr. who told us this morning (some of it repetitive) -  "don't read too much into these small fluctuations", "day 10 is too early" and "don't be disappointed or alarmed if the numbers go back down tomorrow". Well hell, I still can't help feel like we are turning a corner.

Faye is on oxygen full time and a pulmonary physician comes in every 4 hours to do lung expansion (EzPAP) therapy. The oxygen mask tends to dry up her sinuses and combined with low platelets cause spontaneous nose bleeds which makes her nauseous.  The blood hurts her throat and the vomiting/dry heaves cause her nose to bleed more then she needs more platelets and to give platelets they need to pre-medicate with anti-nausea medicine, the anti-nausea medicine cause sedation which lowers blood oxygen levels... kind of a vicious cycle but they really are doing their best. 

Steve and I wonder on a daily basis, how insane were we to even consider trying to do this on an outpatient basis!?!  Can. Not. Imagine.  I can only think that, had we tried, we would have landed in PSL pronto.  And when I think about our brief stay in PSL in June I take back every complaint I ever made about the bathroom/shower situation here.

Friday afternoon we met with Dr. Liu, the radiation oncologist, who is recommending more radiation as soon as Faye's counts recover enough; 3 weeks, daily, boosted, 21 gray to the mediastinum area(s) of concern.  Since Faye's cancer is aggressive the Doctors are also recommending -and looking into- additional antibody treatments on a 'maintenance' basis.  Both sound awful but at this point I feel as if we've already thrown the nuclear bomb - what would a little more sniper fire hurt?  ~L

Day +9   --  Our first glimmer that good things may be on the way: this morning Faye's ANC is 73.5 and WBC is .3*.  The Doctor warns us not to get excited, that these numbers could go up and down for a 'few more days', but I'll choose optimism. 

Faye has been battling a fever since Thursday evening and sleeps when she is not being interrupted by frequent potty trips or when the nurses take vitals, blood, weight, adjust oxygen, insist on a bath and a linen change, do mouth care, nose care, insist on Faye taking pills that aren't available in IV form, change infusions, transfer shifts, flush her port, change her dressing, ... or when Doctors come in, ask questions and confer, do an exam, ask more questions.... on the bright side she does get to sleep through the cleaning shifts. Faye tends to be a little delirious from fever and pain meds and last night she woke up around 9pm and whispered 'good morning' to me. I told her 'good morning' right back.  She keeps asking what day it is and I think (no I know) that she is very sad to miss out on all of the Homecoming activities this weekend.

On another note, and yes things are very odd here, maintenance guys came in early (of course early) this morning, looking more than a little strange in their yellow caps and gowns over maintenance uniforms and boots.  They posted 'caution hot' signs above the sinks and turned on all of the sinks and showers, full blast hot.  The nurses were supposed to have let me know, and admittedly maybe they did, that they run 200+ degree water through all of the lines for a full hour every month in an attempt to reduce bacteria.  Immediately I had to go to the bathroom of course. 

Which brings up the whole bathroom topic (spoiler alert this entire paragraph is strictly me venting):  there is only one bathroom, ONE, that is available for all parents (family/visitors) to share.  Under the circumstances it really does makes sense to not allow anyone but the patient to use the patient's bathroom.  However, in their wisdom the planners of this hospital put the one and only shower in this one bathroom.  So yes, that means that if a parent is showering no one can go to the bathroom.  Now this would not be so bad if, for instance, you could exit BMT and use a bathroom out on 7 but no, there are no bathrooms there for parents/visitors either (because those parents can actually use the bathrooms in their kids rooms).  So BMT parents must exit the inpatient wing and go down a long hallway beyond the elevators and past the check-in desk.  And when that bathroom is in use (which it frequently is as you can imagine) you will then seek a restroom on another floor (I've actually done this a couple of times).  Then, when you return, you need to stop and show your sticker/wrist band, go through the screening  process, then you must stop again to scrub in for the BMT partition... and of course your kid is begging you to 'hurry back'.  So anyway a couple of nights ago I left the room to try a dash to the bathroom and as I turned the corner another woman was letting herself into the 'parent' bathroom while talking on her cell phone.  Yep, talking on the phone.  I hung out for a minute wondering how can one possibly speak on their phone and efficiently go about their business.  Soon I became very irritated as I could hear her talking and laughing inside.  I knocked on the door - my signal to her that some one is waiting and perhaps she should hang up and get about it right?!  Well she cracked open the door -still on the phone- smiled at me and raised her finger (not the middle one, her forefinger) closed the door and continued her conversation (I could hear her through the door)... Sheez, seriously...

Sometimes it is good to vent.  ~L

*ANC - absolute neutrophil count (ANC), the number of neutrophils in a milliliter of blood, having a reference value of approximately 1500-7700 per μL. The ANC is a measure of a person's immune status. Generally, if the count is above 1000, the person may safely mingle with other people or undergo chemotherapy, but a count below 500 indicates that a person is at high risk for infection and should be kept away from those with infectious diseases.

WBC - A class of cells in the blood that form the foundation of the body's immune system -white blood cell count,n a diagnostic clinical laboratory test to determine the number and types of leukocytes present in a measured sample of blood. Overall the normal number of leukocytes ranges from 5000 to 10,000/mm³.

United For Faye!

Day +8  -- After some effort and coordination (and secrecy) Faye's competitive soccer club amassed yesterday evening on their practice fields and took photos to surprise Faye with a most amazing and awesome display of love and support.  Faye was absolutely blown away and cheered to see the slideshow of photos.  Many thanks to Heidi, Sean, John, Tito, Tim and the whole club, such a great group of players and coaches, and such a fantastic show of support.

The soccer event reminded me of another amazing show of team support: over the summer Faye's swim team organized and held a 'swim-a-thon' in Faye's honor to raise funds and show their support. I didn't blog often over the summer but last nights event again reminded me how very lucky and grateful we are to be part of such a loving and generous community.

We had a super long and super miserable night last night.  Faye has had ongoing stomach pain for several days now but late last night she also started a fever. So the Dr. doubled up on Faye's 'broad spectrum' antibiotics, and in the middle of the night  --of course in the middle of the night-- and with a fever of 103 we bundled Faye in a wheelchair and wheeled our way down to radiology for xrays.  The great news is that the xrays showed no sign of typhlitis. After the xray expedition we got all settled back in bed when Faye discovered that her portable heating pad had burst and the filling that was a strange chemical liquid-crystallizing-into-solid had seeped all over her bedding and jammies.  We called the nurse back, de-accessed Faye's port and commenced to cleaning.  The stuff was everywhere and the cleanup was no small chore.

Speaking of chores, getting through this stage of the process is arduous.  Each day of waiting for Faye's counts to start rising is an eternity. Crossing off one day at a time here. ~L

Faye on 10/3 with 'Avengers'
(not Star Wars duh) Lego Action Figures

Day +6 - In addition to various medicinal cocktails contrived to help protect Faye's digestive/intestinal track she has been on a continuous rotation of heavy painkillers, blood product infusions, TPN (IV nutrition), and some of the most powerful anti-nausea medications available.  All medicine is now IV as it is too painful to swallow.  It also hurts to speak and the Doctors have recommended alternative options for communication but she's so weak and sick she can't really write or type either.

At some point during the night last night the entire unit, well the whole 7th floor, transitioned to 'protective' status due to a renewed and vigorous 'C Diff' bacterial outbreak.  This is particularly alarming for us as Faye's counts are still rock bottom and expected to remain there for another 2 to 5 days.  All common areas are now closed and patients are not allowed to leave their rooms.  It is particularly sad to see 'closed until further notice' signs on the play room doors.  Not that we've ever been in there but still - it does break your heart a little more...  When we checked in two weeks ago the staff mentioned that C-Diff was a problem, a battle they've been waging since May, but apparently it's now worse and they can't get it under control.  So - for now - even more bleach and even less coming and going -- and lovely yellow gowns, caps and gloves for all. ~L

'Day 1' arriving early and with our first snow of the season much to Faye's delight. She actually got out of bed and came to the window to see the dusting of white on good 'ole Colfax Avenue. Unfortunately 'Day 0', transplant day, was not without drama but it all turned out fine... In the wee hours of the morning yesterday as I lay awake reading about the origin of the word 'crap' on my phone, Faye woke up to go to the bathroom.  We resumed our familiar positions:  Faye sitting on the potty with her head over the bucket, me standing, holding her and rubbing her back.  As I was trying to convince Faye to try to get back into bed I noticed she was very hot then just as suddenly she passed out in a cold, pale sweat and started to tremor.  Fortunately I held my own crap together, hung on to Faye and yanked the call button.  Within seconds the room was filled with medical staff.  They acted very quickly easing Faye onto some blankets on the bathroom floor but not before one of them accidentally yanked the line out of her Broviac port.  With blood and fluid everywhere and both rooms literally filling with people (I'm not kidding, at one point I counted at least 23 and more in the hall...), lights on, alarms going off, it was quite chaotic.  One of the Doctors shouted 'If you're not directly involved in patient care leave the room NOW!'.  No one left.  I scooted out of the way cowering in my corner with tears streaming down my face and the word 'crap' echoing in my head, more scared than I can ever remember.  They got Faye on the bed in record time hooked up to a crash cart and mobile ICU and she became responsive within a few eternally long minutes.  It all turned out fine - it was a 'vasovago episode' which they very patiently explained to me in my stunned stupor is not surprising given the extremely high doses of chemo (which I tend to forget really is poison) and numerous medications combined with lack of sleep, inadequate nutrition, etc...  I was only reassured however after Faye turned her head and rolled her eyes at me (no doubt embarrassed at the amount of fuss and attention she was getting and not at all out of embarrassment over her wreck of a mother).

The whole 'episode' only set us back a bit on our actual transplant schedule (I suspect that once the process is in motion and cells are removed from their deep freeze there's not much that will stop that whole train ride).  So as previously promised the stem cells arrived with a small amount of pomp and circumstance - heavily escorted on a rolling cart in a heated chemical bath.  Two small pouches of life elixer.  I was very teary eyed (yes again, but at this point I was more than a little vulnerable emotionally) as the momentousness of the occasion sunk in - along with the chemical fumes they also warned us about.  Speaking of which, the smell actually seems to be the thing the staff talks about the most.  To prepare they put cotton balls soaked in menthol all about the room and recommended we both suck on strong, hard candy to help counteract the noxious and reportedly nauseating smell.  Everyone seems to have differing opinions on what it smells like but to me it was a strange sweet smell like rotten, almost fermented apples.

Not only were those pouches escorted as if they were national security secrets, the Doctors and nurses proceeded to go through a series of confirmations vaguely similar to a cheesy Hollywood spy film.  They had Faye's photo, stats and medical history pulled up on the computer monitor, then with four witnesses and an electronic scanner they scanned both her wrist band, my wrist band and the pouch of stem cells, then they verbally confirmed with each other, then looking Faye then me directly in the eye, a series of stats/data such as Faye's patient number, birthdate, diagnosis, parent's names, etc... The nurses then went through another series of complicated steps to hand infuse the cells.  There was a special vacumn apparatus that helped pull and push every last cell from the pouch and into Faye's port.  When the infusion was complete they went through the entire process all over again with the second pouch.  Done deal.  Whew.

Now we wait for the chemo to hit and hit hard.  Over the next several days Faye's counts will go down to effectively zero while the stem cells find their way into the bones and figure out how to start making new cells.  In the meantime Faye continues a series of daily personal care routines.  Just as an example the mouth care alone involves four medications, takes 50 minutes and 'must be' executed three times daily.

So it is and here we are seemingly deep in the trenches, bracing for whatever battles may come (forgive my dramatic, pedantic ramblings but wow this is a journey for the books).
~L

'Day -1' - one day before transplant!!  With the exception of the first day (yucky Carmastine) and today (yucky Melphalan) Faye has been relatively comfortable building Star Wars Lego action figures and watching Seinfeld during the day with her father... in the evenings Bev has been bringing 'classic' musicals on DVD which we watch while we kibbutz about the presidential debates (first one tonight!) and the upcoming election.  Last night we watched '7 Brides for 7 Brothers' and oh brother wow is it ever dated, sexist, horrible and thoroughly enjoyable.  Faye was rather perplexed about it as several of the concepts, I'm happy to report, were foreign and unusual to her.

Apparently transplant will be a very low-key almost anticlimactic process.  After defrosting, they will walk the stem cells to Faye's room, hook them up through her Broviac port and infuse.... About the only dramatic part, we hope, will be the secure escort and monitoring services that will accompany said stem cells.  As they are likened to 'liquid gold' they will be escorted by a minimum of two staff members, one from the lab and one from the transplant team as they are hand carried from the storage facility to Faye's room.  Then they will be continually monitored by several staff members during prep and infusion.  Unlike other infusions, this one will only be complete after a series of 'back washes' to be certain to get every last little cell.

I've been working a couple of days a week these last two weeks; Steve arrives at the hospital in the morning just as I am leaving, and then we swap places again right after work.  I'll be taking tomorrow and Friday off, and probably a good part of next week if not the whole week, depending on how Faye is doing.  Faye is very excited for the impending rain, snow and cold weather and maybe I am too - just a little bit - as it is another welcome diversion.  
~L