COH outcome

Hi All. Back from City of Hope (COH) in L.A. last Thurs but only for 24 hrs. Was off again for a desperately needed weekend away (my first & physician approved). Returned home late Sunday night to prep for Monday's SCCA appt....and exhausted since. Sorry for the delay...again.
My City of Hope 2nd opinion was everything I hoped it would be. As expected they did indeed offer their version of a mini/midi Transplant. COH is more concerned with getting Stem Cells back on board again. However, they did indeed agree that a slightly larger dose of DLI would be another appropriate and more "benign" treatment option. Dr Nakamura was highly knowledgeable, well published with numerous hematology/MDS/stem cell transplant/GvHD papers, was soft spoken, and ultimately agreed that I was indeed a rather unusual case with a 7 yr relapse, no stem cell recovery post-chemo, no immune system, and surviving on weekly blood transfusions, yet doing surprisingly well. Hell, Fabulously well !! He likewise presented my case to COH's tumor board/case conference where difficult cases/patients care are discussed. Per his phone call on Monday they too agreed with his consult. And THIS is exactly what I was seeking; after numerous and significant hiccups here, to RE-instill the confidence back in my care at SCCA.
I was also blessed enough to be hosted by a fellow Transplant patient almost 2 years out whom sailed with us on Selah during last years Seattle Leukemia Cup race. Stephen & Erin were lovely and not only offered their home as base while in L.A. but Stephen likewise accompanied me to & participated in my appointment with Dr. Nakamura. This in itself was priceless support, especially from someone who has literally been there done that. Erin, a pharmacist, was likewise instrumental in seeking information about potential drug treatments. I owe both Stephen and Erin many many thanks for opening up both their hearts and their home to me. Along with them I likewise owe many thanks to those that offered to help with mileage to L.A. More specifically to old dear friends Beth & David, bless their souls. Huge bear hugs & kisses to both of these couples.
Moving forward... for the very first time my WBC crested to a single digit: 1.01 (yay !!) and more importantly my neutrophils, so desperately lagging, finally & consistently stayed above the 0.50 level. On Monday they were 0.63 !  Not only the highest they've been, but the largest increase in one shot. Perhaps "something good comes this way"??  Because of this Dr. Laura said they would like to do another DLI at a slightly higher (and more complicated) dose, before any chance of the return of Leukemia blast cells. To ensure my marrow is still in Remission I now have a BMA scheduled with the DLI to follow next Wednesday. This DLI will be a longer procedure after infusing Bruce's thawed Lymphocytes including several hours of close monitoring due to a cryopreservation additive. It is expected that this DLI will give Bruce's cells the boost needed to produce & protect my/his immune system from the return of the cancer...the much sought after "Graft vs Leukemia" effect.
Keep fingers & toes crossed for this needed forward momentum. Here's to DLI #2...

City of Hope

I hope this post finds everyone stuffed and jolly after their Christmas gatherings and joy. Just a quick update: I have indeed been scheduled for my 2nd opinion at City of Hope Medical Center in Los Angels for January 6th. Honestly I am simply looking for them to RE-instill confidence that I am indeed being lead down the proper medical path here at SCCA in Seattle. Anything else will be a welcomed bonus. Thank you all for the offers of help; mileage, support, lodging... You are all priceless.
Here's to a Joyous, Prosperous, and Healthy New Year filled only with Good things for us all !  To Life !!!
Cheers

Thank you & a Joyous Christmas

I want to thank everyone of you who offered up your miles. I am still literally reeling over the response, the calls, the text's, the emails...your kindness, your compassion....& the speed at which this is all happening. Currently I still have no date but likely within the week. City of Hope is still missing 2 crucial medical records from SCCA. Dear friends from ole S. Naknek Alaska days and my Best GF from middle/high school back in NY will split the mileage - one down to LA, the other the return to Seattle. I want to wish you all a most joyous, wondrous & simply Fab holiday. You have all touched my life & my soul in such a profound way. Please stay tuned. Thank you. And Merry Christmas to all !  xo

Frequent Flyer Miles anyone ?

Holiday Greeting all. This will hopefully be a quickie, I promise.

It is likely you have been following my current plight with Leukemia and my subsequent chemo's I endured this past summer. You will then also already know that the 2nd round of chemo severely burnt out my bone marrow environment preventing any return of marrow (marrow recovery gives birth to all blood cells). This 2nd round of chemo was FAR too aggressive and has since not only left me in the amazingly vulnerable & susceptible situation of lacking any bone marrow & absolutely NO production of blood....but we are also unable to move forward with mostly any further treatment against the Leukemia until my marrow and blood return to a more suitable protective level. At the utterly shocking & unacceptable point of being Day 121 post-chemo I am presently living blood transfusion to transfusion. We are at a medical stalemate....a "conundrum" so I've been told.

The above being said, I have been advised to seek a medical 2nd opinion...pretty much immediately. Unfortunately there are only maybe 20 places in the United States where they handle bone marrow transplants & issues related. I have a connection at City of Hope Medical Center in LA & after reviewing my medical records, they just called to tell me they would like me to fly to LA as soon as they can schedule me. They have promised it will definitely be before the new calendar year Jan 1 but much more likely within the next several days.

I am writing this to simply put it out there....

  

There is a very great need for any available Air Mileage on Frequent Flyer plans that may perhaps be expiring by the end of this year.....or any extra miles or unused ticket that you may loose....

If you would please consider donating them for this 2nd medical opinion, enabling me to get to City of Hope Medical Center in LA during a very flight-expensive and uber short-notice holiday craze time I would be ever so Profoundly Grateful. In truth I am utterly mortified to have to openly ask this....especially during Christmas time. But alas, it is because of the timing & expensive Christmas flight-prices that several friends suggested I put an e-mail inquiry out simply asking....

Unfortunately due to my medical condition I will require a Non-Stop (less vulnerable exposure) flight from Seattle to Burbank CA and return. I DO NOT have a date yet ! I am awaiting a phone call but may need to fly as STAT as tomorrow afternoon/evening (!!??) for a potential Fri Dec 19th appt. Better yet, if not that scenario then more likely fly Mon night Dec 22 for a Tues or Wed (x-mas) eve day appt - returning X-mas eve.

Again, I never EVER thought I would be in this situation EVER... ! But here I am. I am continually stunned, left speechless, by all the time and work my caregivers have given me....and by all the unbelievable moral and long distance support you guys have propped me up on. Bloody Hell, it does indeed take a Village !! Mortified as I am, grateful as I am...there is indeed an urgent need. Please Please PLEEZE understand and forgive me if I don't reply back to you....time is of the essence & this is just too crazy of timing. I will no doubt have much treatment issues to contemplate. Just hope that all the stars are aligned.

OMG this is a crazy way to sign off, especially after inquiring about the above mileage but... I TRULY wish everyone Holiday Joy. May yours be touched by simply Fantastic treats, Good Health, abundant joy, and sheer ole' fashion belly laughter. Again, I thank you from my heart.

To Life !

Cheers.

Kristina  -  xo

Stagnant...& overdue

I owe a big apology. Truly there has not been much to write. Simply because we are still holding our breath & waiting with now mild anticipation for ANY bone marrow to return... To start producing blood again. At Day 112.....Still waiting. I now feel akin to a sort of vampire. They pump new blood from other people into me, I use it up in approximately 5-7 days, then I need more new platelets and blood. Ah, the malicious cycle. I still have no immune system. And am defenseless against everything. I continue to take a number of prophylactic med's - several that are criminally expensive. And I'm tired of just waiting. Of seeing the 4 walls of my own home, or of being up at the clinic. I'm tired of this snails pace progress - forward as it may look - being measured by fractional digits that barely move.... Or teasingly, deceptively bump-up...slightly...only to slightly fall back again.
Please understand I'm not writing this with any angst, fear or outright rage. It's far closer to the opposite of simple stagnation, apathy, boredom, whatever.... In sailor's terms; I'm in the doldrums with this progress.... Argh is appropriate. I'm exasperated. And I just don't know what to say anymore.
For the moment (at least this moment) Transplant is off the table. Other than setting up for my second DLI possibly this week, I had the prerequisite bone marrow biopsy last Wed. The Good preliminary news is that there is "no residual disease detected". The final 2 reports should be available shortly. Perhaps I'm being a bit too cocky ? I knew in my soul there wouldn't be any residual Leukemia. Crap, they burned the Hell out of my marrow environment. It's not growing or sustaining anything now....as it should be. I was in remission with the 1st round of chemo. Why would I not be now ???Could there possibly be any residual disease cruelly lurking, slinking around in there somewhere.....Still ? ? ?
So please except my apology. For my tardiness, for my seemly contempt possibly cavalier perspective, for my lack of communication. In truth I am actually doing Freakishly well. Go figure. And...as my caregivers will agree am yes upbeat, laughing, living, and certainly making plans for the future. Even under the above lousy circumstances. You better Flippin' believe I am !!
Thanks so much for bearing with me dear friends, peep's, my homies, my village. True, it hasn't been easy. But please DO stay tuned.
To Life ! 

Thankful

Blood draw today, appropriately Thanksgiving Day with results to be thankful for. Slowly the numbers are creeping up. Whites 0.69 & Neutrophils 0.40. The highest they've been. And this is a good thing! It also seems I've been holding both the platelet transfusions and the red blood transfusions maybe a day or two longer than I previously have. In fact, a platelet transfusion and a red blood transfusion we planned for tomorrow could probably wait until Sunday. However for safety reasons we will schedule both for Saturday now. Wow. Although in extremely minute increments, I now feel that there is indeed a slow progression forward. For this...and so very much more...I am both grateful and thankful. I reserve a very special soft fuzzy place in my heart for Bruce my donor....and for ALL my priceless caregivers that nurture and support me. XO
I pray that all of you have equally precious things that you too are thankful for on this day = )
To Life.
Cheers.

Today is my 7th Birthday

Go Figure.
We transplant patients always recognize two birthday's each year. One biological, the other donor gifted. We acknowledge what our donors bestow upon us during the transplants that literally gave us our lives back. Without them not only would we not be here but likewise we wouldn't be the walking medical miracles that we are. On this day I have always honored my donor Bruce tremendously. Simply because he made a difference. A Huge difference... in my life.
Amongst all the unknown, as I move thru treatment this second time around, this date, such a monumental milestone, I had completely forgotten about until I was on the 5th floor late yesterday afternoon. As the staff was confirming all my identifying info, including the date, (for yet another added-on platelet transfusion) it occurred to me that November 14th - Today - is my second post-original transplant "re-Birth" date. I am now officially 7 years old. Seven beautiful, enlightened, active, sweet air breathing, years old. Thank you Bruce.
In commemorating this day, for the past six years I have always sent Bruce a Thank you / Happy Birthday note. This time, with everything that is going on, it simply slipped my mind. I feel awful. Both he & his wife Beth have stood by me, listened to me, supported me throughout this horrible relapse. I can't believe I forgot such a monumental day in my life. I can't believe I'm fighting against this thing again. And still, Bruce donated....yet again, his T-cells. Go Figure.....
To Bruce.
To Life.
Cheers !