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