Christmas Eve Dinner 2012

Day 83, Happy Boxing Day.  Apparently not a day devoted to boxing up Christmas junk... We had a fantastic Christmas with lots of family, friends, food and wine; a perfectly welcome distraction.  The Doctors have been reducing Faye's steroid dosage a little each week as they ease her off altogether and she has just two more weeks to go.  These last few days she is finally experiencing some relief from some of the many side effects.  Faye took Christmas Day off from school work but she's back at it today, spending many hours on her own and with both Bev and Karl. Amazing.  Not only is she working through nausea, pain, discomfort, and fatigue but now also through the distractions of the Holidays.  Though it was a good year in some ways I'm not at all sorry to put 2012 behind us and look forward to happier and healthier years ahead.  Happy and healthy 2013 to all!  ~Lolly

Day 67 and Faye is feeling so much better.  We arrived home Wednesday to a clean and cozy home all decorated for Christmas.  I can't brag enough about how much Steve, Zoe and Lydia have contributed and supported Faye through this entire ordeal.   

Faye had pulmonary function tests late Friday afternoon and more CT scans today.  I just hope she will not have to be on the steroids for as long as they first prescribed (5 weeks!).  The absolute best news of the week is that Faye will not have additional chemo!  Apparently there is no clinical confirmation that additional chemo, even the antibody, is effective in the absence of tumor.  So big relief on that score. 

And finally on the academic front.  With all of the additional hospital activities Faye has fallen further behind on school work (an already overwhelming load).  The great news is that our dear friend Bev is now Faye's home/hospital tutor!  With the ongoing help of Karl on AP Stats Bev has spent and will be spending countless hours with Faye and on Faye's behalf advocating with Creek and making progress on the work load.  Bev is absolutely amazing.  Together they've mapped out a plan (reasonable though very ambitious) to squeeze in enough credits for Faye to graduate on time with her class.  Faye is encouraged and, though exhausted, she has dug in; tackling her daily goals with determination at all hours and even through the weekend.  Amazing girl.  ~Lolly

Day 62. 

It's official; we're finally breakin' out of the Hospital today woo hoo!  It feels like an eternity but in real time it was not even a week.  [Here comes one of the longest run-on sentences you'll ever not want to read...]  Between the procedures, the power outage, the 'flight for life' helicopters seemingly swooping into our room at all hours, the shock and fear of stumbling into the hallway to find multiple rooms taped and sealed in heavy plastics (like ET or Dexter - I jumped to the obvious 'contagion' conclusion only to discover it is due to water leaking through the ceilings), Faye's oxygen monitor alarm beeping at all hours (alarming until you realize it is because they are continually and gradually reducing oxygen flow to encourage Faye to breathe on her own) and  -  most of all   -  the stress of why we're in the Hospital in the first place...  I'm simply a wreck.  I don't know how Faye holds up so well but I do know we both have the mightiest desire to be home.

Faye's scan on Monday was not as encouraging as her clinical results.  The Doctors were not discouraged at all, but I misunderstood their comments esp about consulting a surgeon and briefly went into a bit of a tailspin. Faye continues to improve though, and today the scans finally show it!  I can't come close to expressing the relief I feel although we are cautioned that we are not entirely in the clear yet.

Faye will continue high doses of steroids and will have more scans on Friday; more milestones to reach before we consider restarting radiation. Thank you to everyone for all of the kind thoughts, messages and prayers they mean so much!  ~Lolly

During rounds this morning the Doctors were not encouraged; Faye had continued to desaturate during the night last night and was still requiring high levels of oxygen.  But around noon today we started turning a significant corner; Faye's breathing is increasingly easier and the nurses have been successfully reducing her oxygen levels over the last 3 to 4 hours without desaturating.  We're not quite in the clear but this is so very encouraging. Faye is scheduled for an x-ray in the morning and we're crossing fingers and toes for further confirmation that we're on the road to recovery; if yes we might even be discharged as early as Wednesday!  ~L

Wow what a long day it was yesterday. Faye and Steve were here at 9am for a series of pre-bronchoscopy tests and procedures.  I left work at 11 in time to join them for the Doctor's consult after which we headed down to the surgical wing.  All went well and by 2:30 we were in the recovery room - a special high compression chamber that continually forces air from the ceiling downward and outward to ensure that no viruses or airborne bacteria would enter the room.  It was very (very) loud and very (very) bright; a combination that, if you're prone, will immediately cause a severe headache. Around 3 they let us know that Faye's room on the 7th floor would not be available for a 'couple more hours'.  Fortunately they also scrambled us around so that we could move to a BMT pre-op room that, though not comfortable, was infinitely more comfortable than the compression room. Some time around 4pm the power went out.  In my memory I can't recall ever experiencing a more shocking transition to complete silence and absolute blackness.  Faye and I soon found our voices and began to exclaim wtf phrases at the same time that a huge groaning and shaking took place; some of the lights came on as the building switched to generator power.  Apparently three power grids had gone out across the city but I've still not heard confirmation in the media.  In the mean time nurses and maintenance personnel rushed around checking on equipment, plugging vital pieces into the 'red' sockets, all non-emergency surgeries were put on hold, etc.  I began to wonder what was happening in the lab where they were supposed to be performing tests on all of the tissue and samples they had gathered, particularly Faye's.

So around 8pm they finally moved us up to room 712 and a Doctor came by with some preliminary results.  So far all results are negative for viral, fungal and bacterial infections.  So by process of elimination we will -for now- assume (and hope -given the alternatives) that the inflammation and spots in Faye's lungs are a reaction to the BCNU/high dose chemo something called 'pneumonitis'.  Faye started IV steroids this morning and now we wait, hope and pray for a rapid response.  ~Lolly

Day 57 -  Over the past several days Faye's counts dropped to the point where she received a much needed blood transfusion yesterday.  The transfusion was the typical 3 hour ordeal after which she went across the street for her daily dose of radiation.  Alarmingly, the radiation session was aborted when Dr. Liu, while reviewing the pre-radiation scan (they scan to align Faye to the lasers), noticed spots on Faye's lungs.  Steve and Faye were promptly sent over to Childrens for more scans.  Faye went 'NPO' (no food or drink) once again and is scheduled for more procedures this morning and surgery this afternoon; a 'bronchoscopy', that we hope will indicate that this is 'just' an infection of a 'treatable' variety.  Either way we will be residing once again in the Hospital BMT unit for an indeterminate period of time depending on path of treatment and response to treatment.  I need not mention that this is devastating to Faye.  In some ways I'm relieved as lately she's been increasingly uncomfortable and I believe that she will get some much needed treatment that will bring her some relief and comfort.  ~Lolly

2012 Hotto Human Pyramid

Day 52 - and we are more than half way there!  Wow what a busy week it's been.  Last Sunday, for the fabulous 5K for Faye, we had much to be thankful for including some of the best Colorado weather ever.  What an amazing turnout, and Faye came out and stayed for the whole event.  It was so fun!  Thank you one and all for your outpouring of love and support.

We celebrated Thanksgiving and Faye's 18th at my brother's house, another beautiful - if colder - Colorado day in which we continued our admittedly insane 'human pyramid' family tradition.  For the first time in 10 years Lydia (at a solid 5' 9" and taller now than Zoe!) did not top the pyramid.  That honor went to Faye as the littlest, lightest member of the family present at the time.  What a great looking pyramid!  And yes we have done this every year in sun, rain and snow; the early and generous consumption of Champagne helping fuel the momentum and insanity.

On Thanksgiving morning when Faye flushed her Broviac port and changed her dressing we noticed that the entry sutures had signs of infection.  We went to the hospital Friday morning for IV antibiotics and scheduled the removal of the port for early Saturday.  The removal went smoothly and by 1pm we were back at home on the couch exhausted, whereupon we continued our somewhat ironic Walking Dead (ew, ew, ew) marathon. We are so relieved to have the port out as it was a major hassle and contributed to Faye's discomfort. The cumulative effects of radiation are hitting hard now causing nausea, vomiting, headache, sore throat and extreme fatigue, especially at night. The final radiation is scheduled for December 4th and the effects are expected to start to decrease roughly two weeks after that. I expect that once Faye hits recovery mode from radiation they'll schedule the first of her four rounds of chemo. At times I want to proclaim (scream) how unfair and unjust this all is but then just as quickly I have the absurdly conflicting feeling that we are so, so, very lucky.  ~Lolly

Day 44 today(!) - next week, the day after Thanksgiving (and Faye's birthday), will be day 50 - half way to the big 'day 100' milestone!  Faye just finished her first full week of radiation and this time around seems more difficult. She is so very tired and has quite a bad time of it evenings and mornings.  Steve and I have a meeting at Cherry Creek HS on Monday to investigate Faye's options for the remainder of her senior year. Everyone knows when a kid is sick and behind on schoolwork it can be so overwhelming but add to that daily trips for radiation and two to three clinic visits per week... it's overwhelming, exhausting and depressing. 

On the bright side it is a gorgeous Colorado Saturday morning and Faye is feeling pretty good right now smiling and laughing with her sisters.  She thinks she might come to the 5K tomorrow to maybe just hang out and see everyone briefly.  Call me crazy but I'll allow it provided she wears her mask the entire time, touches no one and nothing, visits the parking lot only - and she allows her friends and sisters to run 'interference' for her, because people (understandably) tend to forget and they really want to hug on her! The forecast could not be better for a fun run.  There is no registration and no fee - just show up enjoy some coffee and bagels and grab this great excuse to get out, get some exercise and connect with friends and community around a time when we're all very (very) thankful.  Hope to see everyone there!  ~L

Day 35!  Faye gets a little better every week, some days are good and some are bad but the overall motion is forward.  She is scheduled to begin radiation on Monday and she's really, really not looking forward to it.  She's over it all, tired of it all, wishes it were all done and that she could move on.  I make myself look back now and then to help me appreciate how far we've come.

Speaking of how far we've come the Play Strong group is helping organize another Faye run, a fun run -  a non-donation, non-fundraising 5K on Sunday morning November 18. There will be free coffee and bagels starting at 8:30 and the 'run' (walk, roll, drag your dog, push your stroller...) begins 10am.

The 'Play Strong Cherry Creek' group at  Creek HS are using this event as a trial run for the 'Dam Cancer Run' in May, which will be a fund-raiser for cancer research.  They've designed and are selling tshirts and they'll be coordinating the event in general.  Tshirts should be pre-ordered on the playstrongcolorado.org website to guarantee availability.

Please join us if you can and either way please send the information to all of your friends and family in the community who might like to join us.

I hope to see everyone there!   ~Lolly

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

'Prayer Flags' - (props to Aunt Sal): Faye's aunts and cousins have sewn love and prayer into every stitch.

Alex & Faye - room 707

'Day -4' still... or wait is it 'Day -4' already?!  Again we seem to be in that special 'time warp' where time is both flying and crawling.

The hospital staff here are very attentive.  In fact some stop by just to say hello - well that and to see Faye's blond hair and/or the prayer flags -  which are both now apparently somewhat 'legendary' throughout the unit.

Faye's chemo is round the clock with infusions that begin every 12 hours.  Her anti-nausea and pain meds are also on 24 hour schedules and the staff has successfully adjusted them to the point where Faye actually ate (and kept down) 'real' food today special ordered from Noodles & Co.  Faye also enjoyed a nice long visit with her friend Alex who brought, among other gifts, a special 'boyfriend' pillow (!).  Tomorrow will be day -3 .... can you believe how fast/slow it's going?!!
 ~L

Here we are, 'BMT' unit, Children's Hospital...

So far every chemo Faye has had, with the exception of the antibody this summer, came with a list of 'adverse reactions' about a mile long.  The 'adverse reaction' list for the antibody was maybe only a half mile... and I'm exaggerating, a little. These first few days Faye should feel relatively 'ok', and I use the word 'relatively' very pointedly, as the chemo side effects get cumulatively ickier.  The possible exception is today, 'Day -6'- as she is infused with a chemo called 'Carmustine' which is particularly known to significantly lower blood pressure.  Faye's blood pressure is on a 'baseline low' naturally so the nurses have been staying with Faye and taking her blood pressure every 5 minutes.  So far she's dipped twice - 89/49, and 96/33, - at which point they interrupt the chemo infusion, add saline until pressure is back in range, then restart the chemo at a reduced, slower rate.  We are on pause right now as she's at 92/30 and we have a team of Doctors and nurses in the room - I'm trying to stay in my corner here out of the way. Tomorrow, 'day -5', through 'day -2' Faye will have a combination of Cytarabine and Etopiside, 'Melphalan' on 'day -1' then 'day 0' is transplant day.

We are on the 7th floor in the BMT unit which is separated from the rest of the hospital, and seemingly the world, with two sets of big double wide doors covered in big red restricted access warnings/instructions.  There are two categories of patients in here; 'Protective Precaution' (standard BMT) and 'Isolation'. The rules and guidelines for both are also about a mile long with phrases frequently bolded, italicized, and peppered liberally with 'must', 'must not', 'patient use only', etc... there are a few 'may', 'may not' and 'permitted to' phrases as well. Visitors are limited and must (see what I mean?) be on a pre-approved list, have up-to-date immunizations, recent flu shots, be in good health, follow BMT protocol, etc. Just as an example, the instructions on hand washing alone are a page long and involve six steps.

We have our phones and computers, schoolwork, books and videos - all of which are wiped down with bleach. In addition to the other constant interruptions the staff comes in and cleans/bleaches the room top to bottom twice a day every day. All surfaces now have a bleachy fog and my nose and eyes burn constantly from the smell.  There is a strict low bacteria diet, no food allowed in the room except for Faye's, and under standard BMT precautions we can bring in outside food to Faye if it is sealed and/or low bacteria/freshmade.

The pre-approved visitors can come and go, one at a time, but it's rather a hassle so I'll limit my excursions and mostly stay put.  However if Faye has other company and is feeling well enough Sunday morning I will sneak out for some tennis(!). There is a treadmill and an exercise bike here on the unit, which of course I'll be using daily, heh, hem.

So right now Faye is 'Protective Precaution' status, and as I was saying the ickiness steadily increases and then should 'bottom out' around day one or day two (about a week from now) until about day 7 (about two weeks from now) during which time she will be both 'Isolation' status (additional rules and restrictions) and heavily medicated.

So that's what it's all about for now, getting through one day at a time, and focusing on mindless entertainment like The Avengers and Season 5 of Big Bang Theory.
~L

PS  Thanks to everyone for kind thoughts, prayers, wishes, texts, emails, phone calls, cards, magazines, movies, meals, care packages, tutoring, visits... wow.

Faye (yep, the blond!) and Melpo

Here we go!  After months of preparation Faye checks into Children's tomorrow morning for transplant.  I cross fingers and toes daily that flu, cold and germ bugs stay far, far away.  Faye has not been able to go to school this semester though we did attend my nephew's wedding in August and a great time was had by all. On another bright note plans are coming along for another Faye fun run in November and another Dam Cancer Run in May.  The fun run will be the Sunday before Thanksgiving.  A great group of kids at Creek have started a Play Strong Cherry Creek club to help with both events.  PSCC may or may not coordinate tshirts for Faye's run but otherwise it will not be a fundraiser.  I'll post more details as I get them both here and on the playstrongcolorado.org website. 
~L

Quick update:  Faye had a long week of stem cell collection last week and a long week of tests, consults and diagnostics this week.  We have a consultation with Dr. Giller Friday afternoon to review all of the results and look ahead to next steps:  which would be to go inpatient - now scheduled for the 27th....  I'll post more soon.  ~L

With all of the advancments in communication it's amazing to me how often it can still be so slow and unreliable (and frustrating).  It has been a real battle trying to get Faye's BMT process in place and confirmed.  Our CBCI Oncologist finally spoke directly with our BMT Oncologist (Faye will do the BMT inpatient at Children's) and they've established agreeable dates and times:  Faye will start injections on 8/30, collection of stem cells will take place from 9/4 until they have enough (probably through 9/7), she will have tests (cardio, echo, ultrasound, PET/CT, etc.) the week of 9/10, then we will check in to the Hospital on 9/26 to begin 7 days of chemo followed directly by transplant on October 3.  We expect to be in the hospital for 4 to 6 weeks of recovery.  Faye will miss all of her first semester but we expect that, with a smooth recovery, she will be able to re-join classes after semester break.  We spent several hours with Creek counselors, the Vice Principal, Home/Hospital district coordinators, teachers and our new Home/Hospital Tutor, Karl Mimmack (!Yay Karl!!) and with the magic of online classes and Skype we have an outline that just might allow Faye to graduate on time.  But.  It really does take a village and we continue to humbly bow in gratitude on a daily basis (not at all a bad habit to be into).   ~L

The Doctors have conferred and have come to the conclusion that we should do two more rounds of the antibody before transplant. This will give Faye a better chance of complete and final remission so we are completely on board. The plan is for six more weeks of antibody - two 21 day cycles. September will be all about transplant preparation: tests, scans, injections and stem cell rescue. October will be all about high dose chemo, transplant and recovery. We are seriously considering the out-patient option for the transplant - investigating pros and cons in the next week or two but ultimately it's Faye's decision. Amazing that it is even an option. ~Lolly

The scan is clear!!!! There is some metabolic activity showing up in Faye's sternum but the Doctors are confident it is bone mending activity from the biopsy and the areas of previous cancerous activity are clear.  More details later on the ASCT plan, apparently it will take 3 to 4 weeks of injections and prep work before we are admitted for the high dose chemo and then the transplant.  I can't even begin to express my relief and joy right now. Lots more to worry about and lots more work to do but I feel like we're finally on track! ~Lolly

July 16 already and summer so far has been almost normal, we even went camping over the 4th!  The second round of Brentuximab was completed two weeks ago and it has been amazing: Faye has experienced some fatigue and nausea and her blood counts have been on the low side but wow what a difference from the horrible misery of traditional chemo. We just got back from scans at Childrens' Hospital and we are hoping, praying, crossing fingers, counting steps, holding breath, etc. to hear good news today. Things do work a little differently when tests are ordered from outside of the Hospital so we may not have any news until tomorrow.  If the scans are clear - or - 'clear enough' we will start to prepare for Faye's autologous stem cell transplant.  If the scans are not clear we will likely try two more rounds of the antibody.   So stay tuned, more later when we hear results.  ~Lolly

School is out and it's another beautiful day in Colorado.  Faye is significantly better each day but on Monday her new Oncologist, Dr. Maris, decided that we should give Faye more recovery time before starting treatments.  We do not have the schedule yet but it looks like we will start treatments next week; two 21 day cycles followed by a PET scan.  The goal is to get a clear PET before starting the BMT.  We are anxious to see how Faye tolerates this chemo/anti-body/mab; it is supposed to be comparatively moderate in terms of side effects but we won't know until we try it.

Good news - Faye's surgeon has contacted Creek HS and recommended Faye be excused from finals. Faye's counselor then contacted all of her teachers and they worked together to seal the deal - Faye has completed her junior year and is officially a senior.

More good news - Faye's competitive soccer coach has excused Faye from tryouts and offered Faye a permanent spot on the team.  Which is great, Faye is looking forward to hanging with her team next fall for what will be their last season of competitive soccer.

Looking forward to a long, busy summer in which we will clear this cancer stuff up once and for all.  ~L

We are home finally after three long days and two long nights at PSL. As miserable as I was I know Faye was feeling far worse.  Thank goodness for narcotics and anti-inflammatory medication.  Faye will recover through the weekend and then have her first Brentuximab infusion Monday morning.  She will have two 21 day cycles followed by a PET/CT scan.  If we are lucky Faye will have a clear scan and go straight into the BMT.  Damn cancer.  ~L

Faye's surgery was extremely successful and we are on the 10th floor of Presbyterian St. Lukes Hospital resting and recovering.  Dr. Parker was able to de-bulk 90% of the tumor and the quick biopsy results corroborate the initial Hodgkins diagnosis. Within a couple of days the longer biopsy test results will give the Oncologists more details and they will be able to more confidently outline Faye's remaining path of treatment.

Our room here is cramped, utilitarian, and monochromatic; there is no DVD player or Xbox and the TV is no bigger than my laptop screen.  But of course none of this matters, what matters is the surgical team's expertise and the level of care and on both counts there is no doubt in my mind that we had the absolute best there is.

We also had high caliber visitors today, Sandi came early and brought a fantastic lunch then taught us a card game charmingly named 'shithead'.  Seriously.  And it really did the trick - the hours of Faye's surgery went by surprisingly quickly.  After surgery Melpo, Maria and Becca came by and helped cheer Faye with a perfectly timed visit.  Now, if recovery goes smoothly we will be back home as early as tomorrow afternoon.  I will not be at all sad to leave this room behind.   ~L

Faye and I just got home and I am writing this quick update before running Lydia to a soccer game. Faye's PET and CT scans were this morning at 7:30, then we grabbed the results and took them straight over to a cardio-thoracic surgical expert at Presbyterian St. Lukes for a biopsy consultation. The metabolic activity has increased slightly, the CT shows more 'fullness' to the mass and there is a small additional hot spot in the same general area. Faye now has a biopsy scheduled at PSL for Tuesday morning, they'll go straight in through the sternum and will 'de-bulk' as much of the main mass as possible. So that's that, not what we had hoped for but pretty much what we expected. The good news is that Faye will be able to get the Brentuximab infusions here in Denver 'off trial', thanks (huge thanks) to some very good friends here with some very good connections. I found out about the Brentuximab last night while sitting at the Creek soccer banquet and cried with relief. The banquet was quite the event with varsity winning the state Championship the night before, and Gamelin's most awesome, most incredible video/slideshow which opened with the most amazing 'Light The Night' segment. Well gotta run, have a memorable - in a great way - weekend. ~Lolly

Hi again, so much seems to have happened yesterday and yet so little really occurred:

• The surgeons at Children's recommend against the biopsy; as we suspected the likelihood of getting a viable sample are too remote to justify the risks.
• Faye's radiation oncologist recommends that we wait four weeks (three weeks from today) and re-scan before beginning treatment (as a bonus this buys time to finish the school semester and try to qualify for one of the clinical trials). All Doctors seem to agree this is reasonable and would not significantly increase her risk or alter her long term prognosis.
• We are two inches closer to qualifying for the clinical trial in California; they do not require a biopsy and they will do a one-time exemption for her age.  We've sent her medical records and if after review she still passes we will then start the application paperwork.
• We are still in initial contact/investigation with the NY clinical trial.
• If Faye does not qualify for either of the trials, in three weeks we would begin the VI chemotherapy originally prescribed at Children's followed by the BMT.
• IF we qualify for the CA Clinical Trial it involves four 21 day cycles of Brentuximab (each cycle starts with a 30 minute infusion); a CT scan after two cycles and a PET scan after all four... if successful Faye would then check into the hospital for the BMT.
• Neither of the trials should increase her risks or alter her prognosis, however, as with any trial there is no long term data to confirm this.
• IF we proceed with a trial and it is not successful (no tumor response), we would switch to the VI chemo cycles that the Oncologist at Children's originally prescribed, followed by BMT.

You may wonder why the trials are so important and it's interesting, both trials include Brentuximab, and as I understand it Brentuximab carries a small 'payload' of chemo attached to an antibody.  The antibody is attracted to the CD30 chemical that is in some cancers (@90% of Faye's cancer has this chemical); when infused it will attach itself to the cancer cell and release it's 'payload'.  This significantly reduces the icky side effects of traditional chemo. The success rate of the MABS is comparable to that of traditional chemo.  The FDA has not approved MABS for general use but at the rate the trials are succeeding it is possible that in 10 to 12 years traditional chemo will be a thing of the past.

So there you have it, in case you were interested (!?).  Two bright spots for the near future: 1) Faye will resume school as much as possible and try to complete this semester on time though we still have more Doctors visits and tests ahead of us, and, 2) we will be at the 5k tomorrow!  ~Lolly

Is it Thursday already!?  Monday the port was implanted and the bone marrow biopsies taken which started a week packed full of hospital visits, tests, consultations and confusion.  We have not started chemo yet and it may not even start for a few more weeks.  Faye's oncologists are reviewing her scans again with two more surgeons this morning to see if we can possibly get a viable biopsy of the tumor itself.  The tumor is in a very tricky location and the chances of reaching it surgically are very low, the first surgeon said that the less invasive, or 'guided', surgery is not an option.  The point of the biopsy is to try to confirm what we think we already know from the PET; that the tumor is cancer.  In other words, the results of the biopsy are only dependable if it comes back positive, positive means the tumor definitely is cancer.  If the result comes back negative it probably only means that they did not get a viable tissue sample from the tumor itself.  Ugh.

We are very fortunate to have several friends and Doctors advocating for us; doing research, giving referrals and great advice. Steve has also spent many hours on the internet investigating options as well.  As a result we have been consulting with some of the best lymphoma experts around, and we are applying for two clinical trials (City of Hope in CA and Sloan-Kettering in NY).  It is not likely that Faye will qualify for either of the trials but apparently it is well worth the effort, these trials include a chemo antibody or MAB that would significantly reduce regular chemo side-effects for these first two 'salvage' rounds of chemo.  Which ever path we take, in the end we will go through the 'Autologous Stem Cell Transplant' followed by more radiation.  Ugh, again.

So this morning we wait to hear what's next as though we are on 'stand by' for marching orders.  If you are not as confused as I am at this point, this may help:  possible 'next step' options include: tumor biopsy/surgery, clinical trial, immediate 'salvage' chemo, or wait 4 weeks and re-scan. Since biopsy/surgery seems to be the consensus recommendation from the experts our hope is that surgery will be our next step.  And, if surgery does turn out to be our next step it could be scheduled as early as tomorrow.

On a brighter note it looks like we will have a beautiful evening for the DAM CANCER run and a fantastic turn out!  If we are not eligible for the surgery Faye and I may even be able to stagger the DAM road ourselves. Sadly, I hope we won't be there - because it would mean that we are in the hospital, busy with that crazy biopsy stuff.

~Lolly

The news is bad, the PET results were positive and we have a tremendous battle ahead of us.  Surgery tomorrow (port implant, biopsies and aspiration), two rounds of outpatient chemo start Wednesday followed by bone marrow/stem cell rescue, then BMT isolation with inpatient high dose chemo. I'll know more after our consult with Faye's lead oncologist tomorrow afternoon.  Keep us in your thoughts and prayers.  ~Lolly

Faye's first PET scan since the end of her treatment is on 4/27; one week from tomorrow. My not-so-secret and oh-so-fervent hope is that this will be her last - the last one she'll need, ever. As I try to stay focused and confident, anticipation and stress are sneaking in on me.... Great distraction:  I have news on our next 5K cancer fundraising event and it is very exciting.  We are planning a night run on the dam road Saturday, May 5, 8:30pm. Participants will get t-shirts and glow sticks (or some kind of lighty things) so they can dodge traffic... just kidding, they're actually going to close the road for us! I know it is kind of late notice but you would not believe the obstacles we've encountered putting this thing together.  Come on out and run with us on the dam road, at night, on Cinco De Mayo!  Registration is available on playstrongcolorado.org (and please share the link with all of your friends and family).   ~Lolly

I've been meaning to post news here since Faye's follow up visit at the Hospital two weeks ago (imagine my crappy blog resume:  'lots of good intentions', and 'spins darn good excuses')...  For sure we have been busy and I'd been hoping to get a photo that Faye might be o.k. with posting (see what I mean about excuses?).  Faye's hair is super adorable now, but of course she is not fond of it at all.  Well she's not fond of these photos either but I'm posting them anyway.  She scored the number '13' for her jersey number at Creek this year; her lucky number from the old days and even luckier - her #13 predecessor from last year (Carly, who was a senior) left an inspirational note in the soccer bag 'to future no.13...' so cute! gotta love HS sports!

Faye finished the final final of her first semester last week, so relieved to have that semester behind her.  Finally.  She's doing really well this semester and she's been increasingly working out and practicing with her High School soccer team.  I wasn't quite sure she was ready for field time but she played her first few minutes in a tournament game at Stutler on Saturday night(!)  I missed it darn it; we had made previous plans for dinner at my brother's; I was happily drinking Irish beer, eating corned beef & cabbage, and watching a re-run of the Djokovic vs Isner Paribas Open match (...WOW!). 
 The game turned out to be the perfect opportunity for Faye to get back out there, they won handily - 5 - 0 against Heritage (Warrior Tournament champions!).

Other news of a slightly different variety:  in January Faye's soccer coach at Creek had an inspiration to help get High School students and athletes involved in cancer research fundraising.  I've butted in and we've managed to recruit a few more friends and volunteers to help get things organized.  It's very challenging, particularly finding venues and dates, but we are looking at a potential 5K/fun-run in late April and a 3v3 soccer tournament in June.  Stay tuned and I'll post more details here as soon as I can.  For now my head is already into Spring Break, we are headed to sandy beaches (there is an up-side to the slow real estate market in FL!)!

So anyway, two weeks ago we spent a long day at the Hospital with a CT scan, blood work, check ups, etc. The CT scan showed that there is still a small mass around Faye's mediastinum.  We are told this is not uncommon and that it is very likely only scar tissue left over from her treatment. Traditionally Doctors would evaluate the success of treatment by using this first CT scan as the baseline to compare against future scans. Very recently they've started using PET scans in addition to CT scans to evaluate cancer. PET scans produce the color 3D images that are able to show 'metabolic' activity within tumors.  As I've mentioned before there is a 3 month waiting period after the final dose of radiation before a patient will have a PET scan because residual radiation tends to cause 'false positive' PET results.  Faye's PET scan will be in April.  We don't have the date yet, but I promise to post results promptly.  Please, please, a million times please, let it be good news.   ~Lolly

A very dear friend passed away this week after battling brain cancer for 17 months.  She was the kind of friend that you feel incredibly lucky to have, a great role model and a truly amazing person.  She will always remain one of my personal heroes and words can not define how much we all will miss her.  Our grief is tempered with the example she set for us in life: easily embracing the joy in all things.

Zoe & Faye 'Hitting The Books'

Speaking of heroes, another very dear friend and member of our soccer community was recently diagnosed with Hodgkins Lymphoma and began chemo cycle #2 this week.  With a huge sigh of relief I tell you that her prognosis, like Faye's, is most excellent (and she's a real trooper, amazingly up-beat).  I've always expected to encounter increased maladies and illness as I get older but this is just freaky and unfair.

Port Removal Pre-Op

Faye is starting to act like a teenager again after all these months, and though it is annoying as hell it is also a relief.  I consider that part of her attitude could be due to radiation fatigue which should be peaking today and tomorrow (it is kind of confusing but her first round of radiation was 'wide field' radiation which is expected to cause more fatigue than the narrow focus radiation she is currently undergoing).  Faye had labs drawn on Wednesday and her counts are actually back into the 'targeted range' which means normal! Faye's oncologist mapped out the next five years for us in terms of scheduled check ups and tests.  Instead of having the PET scan at the end of April Faye will alternate CT and PET scans for the next several months.

Zoe, Faye, Lydia & Claire 

 

After a weekend mini-vacation in the mountains visiting my sister and brother-in-law, Faye started back to school this week.  She was able to finish up two of her first semester courses on time but she continues to work on finishing the others while keeping up with second semester work and going to radiation every day after school.  Spring break can not come quickly enough: I was able to score decent airfare to Florida and we will finally take advantage of my Mom's empty condo on the beach.  Just thinking about it is therapeutic for us. We will start with the requisite day at one of the Disney parks in Orlando before driving over to Venice for some major beach time.  There are times when it is easier to embrace the joy in life - beach time is definitely one of them!

Next week Make-A-Wish will be visiting to interview Faye.  The process is slow but interesting and I will keep you posted along with photos as Faye's hair grows back in - it's already growing so quickly! - and scan results - which of course we hope for the best possible; clear, clear, clear.   ~Lolly

Wow time is really flying fast - especially in retrospect. We had a wonderful, relaxing and fulfilling Holiday break with family and friends (which the bathroom scale sadly attests). Faye has been going in for radiation daily, on week days, and up until this past week it's been the 'walk in the park' that experienced patients have described. It's still very much a 'walk in the park' compared to chemo but the cumulative side effects are beginning to manifest; aches and dry skin in chest and back, sore throat, fatigue... So far Faye has completed 11 of the initial 14 doses which she will finish up on Wednesday, then she will start the additional higher dose or 'boosted' radiation on Thursday.

Faye has surgery scheduled this morning to remove her port followed by radiation this afternoon. Maybe by tonight the day will seem to have flown by!? The surgery should take only about 20 minutes; it's the check-in, pre and post surgery stuff that drags on. The port happens to be in the main 'area of concern' and apparently it has the potential to mess with the next PET scan results. Faye hates IV's and would much prefer to keep the port for the radioactive glucose they will infuse for the next PET (which won't be until the end of April, after the radiation flushes out of her system).

Faye has been working, working, working, on school work but is still not quite caught up and she may end up finishing up one or two of her classes during next semester. She is still planning to go back to school when second semester starts on January 17. Faye is looking forward to getting back in shape for soccer and Heidi Onda, who has already done so much for us - especially in these last five months, and who is a fantastic personal fitness trainer, started working out with Faye last week (what a reality check that is!). And more good news: Faye is showing signs of hair coming in, and in the sunlight it surely looks like it will be red!  Well I really need to scoot out of here and take Faye in for her surgery.  Healthy -and Happy- New Year to every one! ~Lolly