Clear scans!  Faye had PET/CT scans today and the scans are CLEAR!!! After being up most of last night with Zoe's coughing (Zoe has pneumonia) Faye and I left for the hospital at 8.  She had blood tests, then a consult then down to radiology for scans then back up for more consults... We got home at 2:30 and I grabbed Zoe and took her over to the Doctors office for her 3pm appt. Zoe is fine but on strict orders to take it easy and that is a very difficult battle I must say....  and, then I got the text message from Faye's Doctor confirming the clear scan, and, well, I'm so exhausted but so elated that I'm weepy.  Time for a nap or a drink --or both!

+203 Days Post Transplant!  Faye and I are at Children's prepping for her outpatient surgery to remove her port today, YAY!  Faye's hair is most definitely red this time around and very curly!  Faye's counts still go up and down but improving overall and her next clinic appointment is May 8.

So many things are happening this spring that our collective heads are spinning; graduation, prom, college planning, spring soccer and of course our DAM Cancer run coming up May 4th!  An amazing group of High School students and parents have been working very hard to make this another night to remember.  If you've not signed up for the emails or the race yet you really should, go to http://www.playstrongcolorado.org and join us for a night run/walk to remember!  ~Lolly

177 days post transplant(!) and we have phenomenal news:  a clear scan!!!  Boy Howdy!!!

Two days ago Faye had her first PET/CT scans -since transplant- and I don't need to attempt to articulate how stressful it has been for us.  How in the heck a person can be so exhausted/dragging and yet so elated/floating is mind boggling -but that pretty much sums up how I feel right now. I don't know how long it will take to get back to normal, I'm thinking this might be the new normal and that from now on we will be living and breathing from scan to scan.

When we got the results Wednesday we had an amazing night of screaming and crying at the Walker household; diametrically opposite the screaming and crying that took place almost one year ago.  Faye is still recovering from the steroids, has more complications from the pneumonitis (low PFT and spots on her lungs), her C cells/T cells (immunity) are still very low but wow we sure can deal with that news.  She will have more tests in 6 weeks and in the mean time she is not permitted to go back to school and she will need to continue her meds and mask wearing... Like I say, we sure can deal with all of that, whew!

More bright news - Faye is still working diligently to graduate but this weekend she is finally taking a short break, a short 'spring break', to travel with friends!  She can't fly but they are driving to balmy (we hope) AZ - the perfect respite!  Happy Spring ya'all and if you've not registered for the 'DAM Cancer Run' do it now! Hope to see you all there!!  ~Lolly

Lots of days since transplant and Faye is officially transferred from 'BMT Oncology' back to regular 'Oncology'.  She is not back in class yet but she has a scan coming up at the end of the month and hopefully her Dr. will give her a 'thumbs up' on most regular activity.  Re-joining classes at this point might be more disruptive than it's worth but it will be nice for Faye to be able to make that decision on her own.  She's very busy catching back up on second semester work as her first semester work spilled well over into second thereby setting back her 2nd semester efforts.  Faye was accepted to CU and is planning away, applying for scholarships and working very hard to graduate on time.

On another note we are also excited to be planning the 2013 Dam Cancer Run.  It was so much fun last year and  it promises to be even more fun this year (and we hope the weather cooperates again)!  If you are interested in participating be sure to sign up online for discounted registration, guarantee your tshirt and other fun glow in the dark type stuff:  http://www.playstrongcolorado.org/damregistration.   Hope to see every one there!  ~L

Our 'day 100' consult did not live up to our hopes and expectations:  the pneumonitis and resulting systemic steroid treatments have set Faye's 'day 100' recovery goal back at least 2 but probably 3 more months.  'Day 100' is typically when the Doctors reduce some of a BMT patient's restrictions and medications. The good news is that Faye's recovery truly is coming along, finally, after a very difficult crash landing from the steroids. Faye is super close to finishing up first semester (one more final to go!). And with the generous and wonderful ongoing support from CCHS, Karl and Bev, Faye has a plan for second semester that will allow her to graduate with her class!  Faye's hair is growing in quickly, but frustratingly she still has the steroid 'moon face' that, dare I say it, is waning.  Faye's energy level is increasing slowly and she'll soon enjoy some easy yoga designed for patients in recovery - and - a special home visit from a masseuse (we really do have the best friends!)! Happy February, and happy spring just around the corner! XXXOOO ~L

Day 100! Breakfast was a celebration with Faye's favorite meal - Draper smoked fish and cream cheese on bagels (with capers and onions of course).  The fish was an extra special Christmas gift from Faye's Aunt Barb and Uncle Roger; fresh caught, filleted, smoked and canned with loving care.  Despite the wonderful breakfast Faye is not feeling well and at the moment is taking a much needed nap. In fact Faye has not felt well this whole week, very likely due to her low CBC.  The clinic nurse had warned us that Faye's counts are going down and at this rate she will likely need a transfusion Monday morning.

It was a busy week, Faye had several medical tests and scans; echo, EKG, ultrasound, CT, etc.  In addition she had x-rays of her knees taken as she's been having terrible knee pain every other morning. We will meet with Dr. Giller Monday afternoon to review the test results and talk about next steps.

At this rate I'm not sure that Faye will be eligible to go back to school right away, and with the virulent flu and whooping cough in the area I'm not anxious for her to be in that environment just yet.  For now Faye is continuing to make an heroic effort to finish up first semester school work.  Best of all; Faye is looking forward to ever diminishing side effects from the nasty/wonderful steroids - and - her hair is growing in at a most amazing rate!  ~L

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