Happy Holidays and Other Moments of Life...

Me with one of the cutest goldens ever on Christmas Eve...post celebrations with Dad's family :)

It's hard to believe that I haven't posted anything on here in two months. Sorry it's been a whirl wind of time passing...though still hard to believe December is almost over when it's brown/greening lawns and 35-50 degree weather outside here in Minnesota. Please note snow is lacking, and I am still undecided on this. I like not having the snow emergencies but Christmas arrived much quicker this year without the hints of snow to remind me that gift exchanges were on their way.

Well Mom is still recovering and healing day by day. It's hard to believe that the Leukemia diagnosis was only January 25, 2011. It's less than a year ago but it feels like a lifetime...

Mom is still having some waves of nausea, some cognitive and physical fatigue, as well as other issues. Issues like that of CMV and she has been inpatient again since the last post and is doing Foscarnet self infusions on an outpatient basis. And of course it gets shipped from Europe and is currently on an international shortage...Mom and I keep joking about moving to Europe so we have easier access to her medications. Still trying to find my "people" so they can start the plans. ;-)

Visited again with her Heart Doc and he said he's "very happy" with her hearts improvement and will be adjusting medications as needed but at this point she is back to/if not better than this time last year! Yay for mini-celebrations.

In other doctor news, Mom's BMT/Hematology doctor reviewed the results of her 6 month (post transplant) bone marrow biopsy results and she is STILL 100% DONOR!!!! :-D Her cell counts are slowly growing but no issues with Jak2 or FLT3 at this point! So yay for mom's body behaving itself!

In other exciting news, Ali got into Augsberg College and will be starting there in a few weeks to finish her undergrad! :-)

AND I finished making all of my homemade gifts just in time for the holidays! Well off to relax now that the busy season is slowing again. Going to curl up with some hot chocolate and a good book. Wishing you and yours a wonderful holiday season!

All my love,
Kate

Reminder: Mark your calenders...Mom's fundraiser is February 18th, 2012!!! :) Hope to see you all there!

Reminder: It's about the Journey NOT the destination...

Even more poignant than the blog's title today, is the subtitle I chose for my blog. It's the lyrics from one of my favorite musicians of all time: Regina Spektor from her song "On the Radio." Her joyful and passionate spirit has kept me going during the last year. So here's a sample of my favorite song:

"This is how it works
You're young until you're not
You love until you don't
You try until you can't
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath"


Well another month has come and gone. And I am another year older, but twenty-six doesn’t seem all that different from twenty-five. Just more wisdom gathered and character built.

Onto updates... Life is always changing, isn't it? Ebbing and flowing like a river. Sometimes a smooth course and other times we are heading down the rapids with no end in sight. That's when we grab the raft, hold our breath and pray that we make it past the next bend. So it makes sense that I have found the most calm near bodies of water lately since it seems to parallel my experiences over the last few months.

Mom is out of the hospital still. She is 100% donor. She is free of the Leukemia blasts. She is at home. She is still going to clinic once a week (especially with her white cells slowly dipping over the last 3-4 weeks-prayers for this please!). She's also participating in Physical and Occupational Therapy. She's STILL healing bit by bit. Still fatigued, both physically and mentally at times. She's also missing the companions she used to have 24/7 but also pleased with her independence. She's enjoying the BMT support group and the wonderful classes at Pathways. All in all, she is still working to adjust to the "new normal".

On the other side of Saint Paul... I am still working two jobs and trying to get mom's fundraiser up and going (PLEASE let me know if you have even a few hours to help with this, any assistance would be appreciated!!). While on the other hand I am watching my life change and branch off in ways I had not even thought to anticipate.

The passing of a wonderful friend and inspirational woman, named Karen Formanek, was one of these moments. Mom and I shared in our grief the pain and loss being deeply felt especially the mother-daughter relationship that paralleled our own. The loss felt by the daughter of such an incredible woman hit me very hard. Flash backs of the moments where I was terrified to my core of the loss of my own mother came to mind almost daily after hearing of Karen's death. The thought of losing her like Danielle did almost broke me during the memorial service. It was all I could do not to run screaming from the hall. But hearing all of the lovely and passionate tributes of the beautiful life Karen lead was a wonderful comfort to all. The loss will always be felt by those she impacted and is a reminder of what one person can do to change the world. Looking back at my knowledge of Karen I am reminded how, even when she was going through her own chemotherapy, she stopped by to visit with mom in the hospital. How she was one of the first volunteers to help assemble baskets for the silent auction for my mom and how she loved and lived with honesty and authenticity. If we can even share half of Karen's love with others this planet would truly be a changed place!

Another moment of change had been in-the-works for the last couple of months and was quickly finalized in the last week. My roommate who has been one of my main "rocks" (or sources of security) during this adventure is happily moving into her newly purchased home in less than a month. I was beginning to fear how much I would miss her absence, from when she started searching for a condo (then later a house), until I discovered that her house will only be 15 minutes away from me! :) I also am reviving wonderful relationships with many other unexpected treasured friends who continue to be a wonderful source of strength. I am continuing my own journey with Pathways and am slowly making "me time" a priority. Sincerely appreciating the occasional day off. Over all life is good. Just need to remember to stop being busy, allow myself to breath and then return to the rush of the river around me.

So for all of you who are still monitoring mom's progress, and my own, we are doing well. Just recovering from the marathon we have been running. Let's just say we are taking a minor pause at this part of the race waiting to see where our strength is and continuing on our route. Thank you all for your continued outpouring of love over the last year. Please keep in touch and if you are looking for a way to volunteer in the future please consider joining our crew for mom's fundraising event, cleaning crew, meals, etc! (email me for more details: wolkate@bethel.edu). Thanks again!

All my love,
Kate Wolfe

Day 100 Results

Well mom's Day 100 bone marrow biopsy was last Friday and results were in yesterday...

Mom's officially 100% Donor-none of her old marrow remains!!!! :-D
NO Leukemia blasts =no cancer!!!
And her marrow cellularity is 40%!!!! YAY MOM!!!!
(And as an added bonus, her CMV (the virus that made her go inpatient last month) is still negative!!!)

Mom also has been approved be by herself (and she is enjoying the freedom of this-though missing her frequent volunteers). As well as being approved to drive herself around.

This is not to say she is fully recovered. She is far from it. This is just the first hurdle on the current race she's running. Next up is facing the fatigue and nausea (and possible GVHD) that continue to be her constant companions. She is growing stronger and stronger by the day but will need to make sure she's not pushing herself too hard. So please keep in touch with us about opportunities to volunteer to assist her! As her doctor indicate daily living activities such as cooking meals, laundry, shopping, and transportation can be manageable alone but when completed in rapid succession can be completely exhausting for her.

We are now embarking on our next (side) project, mom's fundraiser. Since she's still recovering from a SIGNIFICANT transplant (and 8 months journey) we are starting to face the mountain of medical bills that have got her this far. So now we are shifting gears and planning how best to support her during her recovery. We are planning a fundraising event for the future. If you want to join in the effort please contact me: wolkate@bethel.edu


Or if you wish to donate to her before then please make your tax-deductible donation to:
http://www.transplants.org/donate/dixiewolfe

As I have mentioned in the past, the emotional tole of this journey is just now starting to become apparent for all of us. The shift from "surviving" mode to "finding the new normal" is quite a change. And though some of the bolder we've been caring is starting to come off our shoulders- our bodies and minds are just now starting to recognize the weight that we've been shouldering. So continued contact and random emails/letters/thoughts are sincerely appreciated!

Thank you all, as always, for your continued support and love!! Without you Day 100 would never have happened!! You are our foundation and all encompassing love! YOU ARE INCREDIBLE!!!

With the deepest gratitude and appreciation,
Kate


(author of the photo)

What Happens Next?!

As Day 100 gradually nears, we face yet another milestone that we’ve been anticipating. This is a moment where we must remember to pause and honor the bitter-sweetness of the adventure thus far. As a reminder this is not the end. It is only one of many mountains we have yet to climb for mom and her team.


(One of our favorite set of mountains out in Vermont and New York on Lake Champlain)


A problem for me over the last few months has been, I ONLY prepared for getting mom to transplant. All of my research and preparations, were only for how to get her TO transplant (many times it was hard to imagine we would ever be post-transplant).

Then the shock went through and she made it there!!! And then she made it past Day 30, then Day 60, and now is on to Day 100!!! It's hard to even remember all of the experiences we have been through but looking back it still makes my heartache at all the of battles we have come through. The infections, Graft Verses Host Disease (GVHD), mom's ejection fraction/heart issues, issues with nausea, sleep, fluid retention, kidney functions, appetite...and that's just naming a few!

Like I've said my experience as a caregiver of a post-transplant survivor is one that I never expected to get to. There were times when I was told to prepare myself for the worst and to know that she might only have months if transplant was not possible. Now it is and we our heads are still spinning as time continues to pass! More hills have come up in front of us: an obnoxious virus, some GVHD rashes that have come and gone (and reappear), fatigue that comes and goes, nausea seems to be an ever present companion for her, and her daily medication rotation.

But now we are moving forward. Mom's Day 100 serves as a landmark, though not the finish line (this was my naive assumption previously). For most Bone Marrow Transplant patients' Day 100 is when you would transition from the BMT crisis site to your local physician for continued monitoring and close observation-Mom just happens to have both sites be at the same hospital/clinic. She will not be considered "out of the woods" until 18 - 24 months after the transplant. Her next landmarks after this point will be at her 1 Year post-BMT and 5 Years post-BMT.

Day 100 will be mom's second Bone Marrow Biopsy (since transplant). It will be the time when the doctor's are actually able to see whether or not the stem cells have engrafted and are successfully growing a new immune system for her and if she is in remission (still). They will also be closely watching to see if any other side effects/risks posed to her in the future (infections, GVHD, relapse/a re-occurrence of the cancer, or even rejection of the transplant) actually occur.

As I have said this is not the end it is only the beginning of mom's recovery to full health. She will slowly continue to wean off medications, clinic visits, and over time volunteers. After having 24/7 volunteers around her the thought of her having time "alone" is beginning to make us both a little nervous and saddened. As Mom said the other night "we have only served part of our 'tour of duty,' the war is not over yet."

So for all of those who have gotten us this far, those who have given of their time, energy and heart. Those who have frequently laughed and occasionally cried with us. Those who have been the heart beat of our journey. The ones who carried us when we weren't sure we would be able to face the next mountain. YOU ARE AMAZING!!!!! Please know that you are the ONLY reason we have gotten as far as we have! Our gratitude, appreciation and unending love for all of you is beyond measure! I only hope you know how much you have inspire us and those around you!

As we transition into the next phase of the adventure I will continue to tweak Lotsa Helping Hands to allow for continued meals, visitors, and rides to clinic for mom as it will still be some time before she is able to establish her "new normal". We are also beginning to look for support of a fundraising event!! Ideas are flowing, creativity and organization are beginning to be established but if you find yourself wanting to help PLEASE email me: wolkate@bethel.edu. This adventure has been a long one and the costs are not minimal by any measure, so please let us know if you are able to help! :)

On a side note: I apologize for not being able to sign up for as many shifts as I have in the past. Mom and I are both going through post-transplant "burn out". Which is the emotional exhaustion that people post crisis face. After going for months on end in "Surviving Mode" one eventually must crash and at that time all the emotions that have been repressed or stuffed (often unconsciously) then rise to the surface. So both of us are working on self care and emotional maintenance at this time. So please be gentle with our fragile emotional state at this time. Thanks again everyone for keeping us afloat!


Here's a lovely summary of the adventure from another BMT Leukemia survivor I stumbled upon today: http://kenzibmt.blogspot.com/2011/01/day-100.html

Whirl Wind Update on Mom-more to come

Just wanting to get basic information up for all of you!

Mom was briefly inpatient from 13th-19th for her CMV. It became manageable because she responded to the antiviral medications AND her kidney functioning came back-it was dipping a bit because of her dehydration (now she's on a new balancing act between her being dehydrated and over hydrated/retaining too much fluid in her abdomen).

Other item to mention mom's cardiologist on Wednesday gave mom RAVE reviews!!! Her heart is still getting stronger, her blood pressure is bouncing back and her fluid retention is no where close to what is was back a few months ago!

One last note: We are LESS THAN A MONTH AWAY FROM DAY 100!!! Woot woot! Only a little more than 4 weeks to go! So grow little stem cells grow!

And on that note, I know every one's schedules are getting crazy busy-I can relate-but with my current work schedules (and only 6 days left of PTO that I can use through the end of December, and this is for mom as well as my own sick days). We are still in need of companions for mom. Most of the time this will just be you hanging out at the house with her, at most driving her to an appointment or accompanying her on a walk. But none-the-less according to her doctor's she needs SOMEONE with her. So if you haven't signed up but would like to help during the next 4 weeks PLEASE send me an email: wolkate@bethel.edu (we have everything from 4-8 hr shifts, including overnights, meals, cleaning, etc...so let me know what works and we are HAPPY to be flexible).

Thanks again to all of the INCREDIBLE ANGELS in our lives who have volunteered in one way or another over the last 7 months, we are heading toward the finish line and it's only thanks to you that we have ran this race as long as we have. So THANK YOU!!!

Well my darlings, I've got get back to work. Will share more exciting news in the next blog, just didn't want to leave you all in the dark!

Meet My Mom: The Vampire (Just Kidding)

At least that was the joke when I went to visit mom on Monday! She had two bags of red cells being infused into her (almost like a flashback to transplant day). This, apparently, was after several hours of waiting for them to arrive... The staff had begun joking that they would have to open a blood bank downstairs in order to get the blood for mom (then the joke progressed to them needing to pay people for their blood). And when it finally arrived the staff joked they had to "jump" a guy on the street for it. I was in stitches when she told me their jokes, if you knew the staff you would know how funny this story would be coming from them!

But back to mom... So thanks to the recently reactivated CMV, (see previous blog) she's been inpatient since Saturday. So far everything seems to be going okay, though the nausea has increased a bit so her appetite is a bit off again. She's back on Bumex to prevent retention of fluids (especially with the risk this would pose to her now "healthy heart"). Unfortunately fluid retention is a side effective of the current antiviral, so we have to make sure she doesn't end up with another "litter of puppies" (the joke when she was getting liter upon liter of fluid off of her a few months ago is that she was giving birth to "puppies." Okay maybe we are too goofy, but ask her to tell you the story sometime and you will be laughing until your sides hurt!)

Again, back to the story... So mom's counts are low again due to the current regiment of antivirals so the risk of other infections, viruses, etc are high again. But this is not stopping her from her daily walks! She's a Walking Queen-bring it on you crazy "mall walkers" you ain't got nothin' on my momma! ;-) And on the bright side the walks help mom with her nausea, so we've been taking daily walks-she's even been permitted to go outside (with her mask on, of course). We even ended up walking about 3/4 mile on Monday, major points on her pedometer! Woot woot!

It's been a bittersweet week for mom and I. It has been wonderful catching up with all of the staff at the hospital! As always the staff is SUPER excited to see mom again-but it's a sad situation because she's back there because she's needing their professional care, instead of stopping by for a short visit. None-the-less they (and we) are loving our time together again! It's like a SNL episode but we get to experience it LIVE instead!

Well back to work at the office. I will try my best to keep you all updated. At this point mom may be outpatient this weekend or next week-we really have no way of knowing until the doctors tell us it's time for her to go home. Thanks again for the support everyone!

All my love,
Kate

Another Week, Another Adventure

Well mom's had another lovely week at home. Healing nicely and starting to take wonderful walks. Well, she's taking short ones but still the air outside seems to improve her mood, even with her mask on! She seems to be getting back to her "frisky" stage when she wants to be moving and busy and doing things herself more and more. So if you find her making you dinner when you visit her don't be surprised!

Her GVHD rash has now subsided thanks to some miraculous cream the doctor's perscribed, which not only got rid of the rash but also made her skin as soft as a baby's bottom! On the other hand she's having some minor issues with dizziness-standing up too quick and laying down can leave her feeling like her eyes are rolling around in her head. This is likely because of her medications in combination with some minor dehydration last week-which on that note Mom's off her dietary restrictions! LET HER EAT SALT!!! (All she wants! Because it will actually help her retain some fluid which she needs right now).

Her current battle (other than the major internal construction going on-bone marrow changes and such) is that her system thought it'd be a great idea to allow a virus within itself to come active when mom has no immune system. I mean, come on now, give the trooper a break here guys! Geez!

Her current virus is called Cytomegalovirus (or CMV):
http://www.health.state.ny.us/diseases/communicable/cytomegalovirus/fact_sheet.htm

To most of us this will appear like a common cold, mom apparently had it before I was born. Which was fine because she had an immune system and was able to get over it. But when you take away the jail cell containing this bad boy, it can do some major damage to a defenseless body like my moms.

So here's the plan: Mom's had this virus appear "positive" on her blood work since the 22nd of last month, they doctor is giving her through this Thursday (with her current antibiotics) to battle this on her own. IF it doesn't resolve itself, or at least respond to the antibiotics by that time, then she will have to go inpatient again for a week to get a different antibiotic which causes major havoc on her electrolytes, etc and so she will need to be closely monitored for that week. So prayers for a "negative"/clean bill of health for her on Thursday!!!

Other than that not too much going on with mom. A dozen or so wonderful volunteers have kept us going so far, with me needing to take sporadic days off to help fill in the gaps. As I explained to the volunteers, per her primary physician:

"The need for the caregiver is to monitor and assess symptoms, ensure proper disbursement of medications, provide transportation to daily appointments, and communicate with the medical team. The first 100 days post-BMT are critical and a 24-hour caregiver is required.” (7/11/11)

In all honesty this sounds a LOT more intense and skilled than it actually is! At this point mom just needs someone in the house with her, period. You do not need to monitor her, entertain her or even interact with her most of the time. She is very independent and is able to take care of herself. She self monitors, takes and plans for medications, and communicates with her medical team. You are there to help provide rides to and from clinic (as she is not allowed to drive because of her various medications). You are also there in case of an emergency, if something were to happen to her all the “contacts” are on the cover of the Caregiver Blue Binder on the dining room table.

Anyways, got to go get a few more things done in the office before I go spend the evening with mom. If any of you are available to spend a few hours with mom please let me know! We are a little short on volunteers (despite the 95 we currently have listed on our site, only about 10-15 are regular participants and I don't want them to burn out). So if you or anyone you know wants to spend a couple hours in an air conditioned townhome, with tons of food, free wifi and cable please send them my email address:
wolkate@bethel.edu

Thanks again everyone!

All my love,
Kate

Life within the skin...

This week's mental vacation is a beach in Indonesia (not sure where it is located, Google helped me find this one).

So first off I should tell you I was wrong about mom's pills, apparently she's not on 40 she's on around 56 (if I remember what she told me). It took me about 30-40 minutes to sort through the pill boxes (a total of 42 slots for the meds to go: 8am, 12pm, 2pm, 6pm, 9pm, and middle of the night). But with her help we are getting better at filling it! :)

Each week comes with a new set of pill adjustments and more plans for the future (she will most likely not be able to reduce her number of medications until after Day 100 post-transplant when she will be weaned off of her current meds). The latest addition to her medicine cabinet (which is actually a tub of medicine bottles). Is a lotion to help with her rash, which was recently biopsied but is likely a symptom of Graft Verses Host Disease (GVHD). The new medication is to help deal with the itchiness of the rash, which is to the point that without the lotion she wakes up and is unable to go back to sleep because of the intensity of the sensation (itching). So prayers that her system recovers quickly and that no other GVHD symptoms become apparent. More details about GVHD can be found on:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/
http://en.wikipedia.org/wiki/Graft-versus-host_disease

The current assumption would be that it would be Acute GVHD because she's less than three months post transplant.

At this point the GVHD a good/bad sign. It's good in that it shows that the donor cells are doing their thing, it's bad in that it means their attacking her body (her skin) as well as the leukemia cells (what may be left of them) and her marrow. At this point we are still waiting for Day 60 to see what's REALLY going on inside her marrow!

Other than the GVHD, mom's still dealing with significant fatigue. Her body is really going through the ringer right now. So she's sleeping about 8-12 hrs a night, plus a nap in the afternoons. Good news is her cell counts are starting to come up (prayers that no Leukemia blasts are coming back with them). And as a result of her counts she needs less transfusions and clinic visits, she got Saturday and Sunday off last weekend! Go mom, go! :)

Last note of the day, as I head back to work and then off to spend time with mom and her sister (back from California for a short visit this week). Last thought is more of a shout out!

To those of you who have been in communication with me and have been stepping in as volunteers for mom: either in making meals/buying groceries, being her companion during days and nights, providing rides, leaving her notes on caringbridge and in letters to her, and those who have provided so many other acts of kindness for all of us. If you want to join the team send me your information at wolkate@bethel.edu (email and phone) and I will add you to our volunteer site.

For those of you who are unable to volunteer but want to contribute another way, the hospital bills are starting to show up. And though we haven't hosted the fundraiser you are still able to contribute to her cause though the following link: http://www.transplants.org/donate/dixiewolfe
(Note 98% of this goes back to mom and it is a tax deductable donation).


Thank you again everyone!!!

The plan from here on out...(as of day 35 post-transplant)

(This is my current mental happy place, don't remember where I found this picture but I LOVE it!)

Mom, during transplant...

Good morning my darlings!

So as you know my mom is now home and settling into a new routine. LOTS of medications, rest and time with wonderful volunteers! Each day is a new adventure and one moment closer to her new immune system! :)

When mom was discharged at the beginning of last week, it was NOT because she was fully healed and recovered. She was discharged because her cell counts were high enough to warrant her going home. (The longer one is in the hospital the harder it is to transition home. There is also the increased risk of "superbug" infections. These occur in hospitals and are highly resistant to treatment because they have morphed to overcome the HIGHLY sanitary state in which the patients live, while inpatient.) So moral of the story she's home because she's less likely to acquire a hospital infection and her spirits and strength are more likely to improve when she's in her own home environment.

This is not to say that all medical treatment has been removed! She's still going through daily clinic visits for labs and transfusions (including hemoglobin, platelets, and Growth Factors-which she was receiving to stimulate cell growth, however her current clinic doctor stated that this can also cause the cancer cells-if any are left-to increase rapidly, so they are taking a break for a while from that infusion).

She also is taking about 40 medications a day, I say it feels like I am playing Medical "Mancala" (http://en.wikipedia.org/wiki/Mancala) whenever I help her fill her pills boxes (yup that's plural). The medications range from anti-fungals, to potassium and magnesium, to all sorts of fun colors and sizes. Mom gets tired of it. Twenty plus medications in the morning take about an hour to just get down.

Needless to say she's exhausted, my personal assessment is that her spirits are higher than before she left the hospital. But between the medications, visits to clinic, and activities at home she is frequently fatigued and spends large portions of the day sleeping. This is NOT a bad thing. As mom's friend, Lee, stated mom's body is currently "is building a skyscraper verses just having general maintenance done on a warehouse". Her body's old marrow (immune system) is having its butt kicked by the new marrow invading her system. And from day 30-100 her marrow will be completely destroyed and the new marrow will fill in that space. (http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Early_Recovery_Days_30_100/index.html)

Again Graft-Verse-Host disease (see previous blog) and Engraftment failure are both possible risks at this point but her doctors will be watching her vigilantly during the 100 days post transplant. This is also why she requires 24/7 care to monitor for any symptomatic changes. So THANK YOU to all of you who are being such wonderful companions for her right now. With two jobs, volunteer coordinating, and trying to find time to breath I SINCERELY FROM THE BOTTOM OF MY HEART APPRECIATE ALL THAT YOU ARE DOING TO HELP!!!

With all my love,

Kate

Quick Summary and a Whirl Wind Tour!

Well I think yesterday we set some sort of record. (Thanks to all those who volunteered over the weekend and helped mom moves stuff home!!!) So back to the story...

I worked a half day at my day job and then met mom at the hospital. We went through our second course of "post discharge" training and mom's meds (or as I call it "Mancala with pills" see: http://en.wikipedia.org/wiki/Mancala). After the 3 hrs of training our brains were pretty much mush and I packed up all of mom's stuff in my car-while wearing my lovely yellow mask the whole day mind you-can't be too cautious when one's coming off a cold and you're beloved mother has no immune system. And then mom's friend Laurie was the transportation of the immune compromised mother.

We all made it home, unpacked the suitcases, I quick added the mattress and sheets to the spare room for another one of mom's friends who was her companion for the night, and then Laurie brought us a lovely potpie dinner and we all laughed for a bit. Over all a lovely transition home, though reasonable exhausting.

Now onto the fun!!! So now that mom's cells are onto their next adventure the goal is to get her new stem cells (the cord blood cells) attached and growing. It's assumed that they are doing some of this because her counts have been coming up, though she's been receiving Growth Factors to help stimulate their development. Over the next few months they will attach to her marrow and start growing a whole new immune system. During this time her body can be resistant to the new cells taking over, creating new policies and regulations (sorry too much about politics in the news lately) and as a result her body may attempt to fight off the new cells-causing Graft Verses Host Disease. This may appear on her skin, liver, stomach, etc. It all depends on her body and her new cells.

This is part of the reason she needs 24/7 observation and companions through Day 100 (post-transplant) because it will take that long to get her new system established. I will be trying my best to fill in when I can, but with two jobs, being primary caregiver, and trying to maintain my own health and sanity I will be looking heavily to all of you for support and assistance in caring for our patient.

Just wanted to give you all the quick update and will try to post again with more updates soon!

All my love,
Kate

Have a Heart-A GOOD ONE!!!

Hey team so latest update of about 20 minutes ago is that mom's ejection fraction (http://en.wikipedia.org/wiki/Ejection_fraction) has improved to 45-50%!!!! Woohooo!!!! This means that she's finally free of Joey (her external defibrillator) and onto focusing solely on getting through her post-transplant/new marrow adventure!

A quick history on mom's heart (Ejection Fraction):
60-65% (January 2011)
40-45% (February 2011)
15-20% (4/18/11)
30-35% (5/25/11)
45-50% (6/27/11)


More details on Fundraising Event shortly. We are in the brainstorming stages but if you know of anyone who wants to donate to our cause now they can use our NFT site:

http://www.transplants.org/donate/dixiewolfe

(98% of the profits from this site go directly to mom, and you get a tax write off for anything that's donated!)

Or if you want to join our volunteer network please send your email and phone number to me at: wolkate@bethel.edu and I will be happy to invite you to our LotsaHelpingHands site!


You're prayers and continued support is beyond words-you all are angels in our lives!

All my love and gratitude,
Kate

Mom's Second Birthday!!! (AKA: BMT Day)

Well Mom's Bone Marrow Transplant was last Wednesday. (Sorry about the lapse in updates and photos...it's been quite the busy month so far!) Anyways so after a long hard haul we FINALLY made it to transplant. (Only 6 months of hard work from mom battling everything from infections, to heart issues, to fevers/chilling, to well everything-she is simply inspiring in her daily smiles and laughter that she shares with all of us. Her love for life is infectious and I find joy in each moment I am able to spend with her).

For Bone Marrow Transplant patient's the day of transplant is considered Day "0" and everything starts over after it. (Think of it as the day in between AD and BC in religious contexts). For transplant patients everything is starting anew on this day: hope, life, new immune system and cells...it's all new!! So they celebrate a "second birthday" as a result! Ours was filled with lots of cakes, laughter and love. See a few clips below of our adventure that day... (sorry my computer isn't cooperating I will be uploading them later).

For those of you who seem to be among the norm, transplant-though it is often titled a "surgery" or "operation"-is actually more comparable to a blood transfusion. The whole process (for both cord bloods) took at most a half hour. It's incredibly quick and simple in its format. However the next several weeks, then months, then year will truly determine her body's ability to adapt and change to the new marrow which will be slowly taking over her body's old marrow. So here's a VERY quick and simplistic version of what transplant entails-if you have additional question please feel free to email me (wolkate@bethel.edu) and I would be happy to explain it more in-depth!

Work-Up Week:
* Mom went through a week of vigorous tests and reviews with all of her doctors before she was cleared for transplant.

Pre-Transplant (inpatient week):
* Mom went through 1 week of chemotherapy and 1 day of radiation. This treatment is used to weaken her system so it is more likely to accept the new stem cells and allow them to establish themselves within her marrow and develop new healthy cells. (As I have described to many of you, the goal was to clear out all of the resistance on her side since her cells were not recognizing the cancer cells as “the enemy”-since her body was generating them. So the goal, now, is to send in these foreign stem cells-two packs of cord blood stem cells- to attack what may be left, not only the cancerous cells, but also what's left of mom's immune system).
***During this week the doctor's also did a work up on mom's heart to make sure everything was up-to-date on her heart's conditions/regiments. ****

Onto transplant!!!

Transplant day, as I said before, is the easiest part of this entire process. The two bags of cells are transfused in less than an hour and then the rest of the day is spent resting and laughing with staff, friends, and family.

Post Transplant
* (Day 0-Day 7) After transplant occurs, it's typically a week of the cells finding their way to mom's marrow from the infusion site (her port). During this time the doctor's will be using "Growth Factors" to help stimulate the cells development within her body, this may cause her own cells to temporarily increase in number but by the following week the donor's cells should be beating them back down.
* (Day 14-Day 21) During this time “engraftment” occurs within mom’s marrow. In other words, the cord blood stem cells will have attached to mom’s bone marrow and will begin creating new healthy cells in her system. During this time her own cells/body may also react to the new cells in the form of GVHD (Graft Verses Host Disease), which is the donor cells attacking mom’s cells with potential reactions on her skin, her digestive track, kidney and liver depending on the severity of reaction.Discharge:* Mom’s eventual discharge will be based on many variables. Most importantly her cell counts, appetite, and daily living tasks (including exercise, etc). Her Bone Marrow Biopsy will be June 6th and we will be able to assess more of her progress from these results.


* At this point we will need as many volunteers as we can find for tasks ranging from: running errands, to visiting with mom, to overnight care-person, to meal providers, among many other options. None of these are “SKILLED” positions and you will ALWAYS have a medical professional available for 24/7 assistance and any questions you may have. But it will be a HUGE favor to us to know if you are even THINKING about helping this will be an on-going adventure with mom. And her first 100 days post transplant are critical to her success, though it typically will take up to a year to fully recover from this entire process. So thank you all for your continued outpouring of love and support! You are what keeps us going! If you want more detailed updates and how to volunteer your time/energy/etc in the future please send me your email address to wolkate@bethel.edu I would be happy to include you in our Lotsa Helping Hands site!

Thanks again!

All my love,
Kate

It has come to my attention...

So according to a couple sources, as well as a re-read of my blog yesterday, my rose colored glasses might have slipped a bit. I apologize for the "reality check" format/emotional theme of my blog. My mind has been a little overcast lately, too many balls in the air and not enough hands to juggle all of them, I guess. But somehow the love of those around me still keeps that smile sneaking back onto my face.

Life has been a daily rollercoaster lately. I am, for the most-part, ready for this next adventure, just a little bit apprehensive and worried about my lack of control of these results. (After all I don't have any cells in the game this time, though those Killer cells pretty stellar last round!) At the same time, my faith in mom's treating physicians and staff is beyond measure. They are absolutely incredible and their knowledge is limitless. My ability to continue to work 45-50 hrs per week, and still find time for self care, is completely to their credit. They are the best care providers a girl could ask for! My mind is at peace knowing that mom is in their capeable hands!

So on that note, I am like a little kid before christmas today. Butterflies in my stomach are flapping their wings with excitement, still nervous about recently leaving their own little worlds (the safe shell of their cocoons). Tomorrow will be filled with laughter, rest, probably some tears and LOTS of cupcakes! (For many patients Transplant is seen as a second birthday-the opportunity for new/renewed life thanks to the cells of another. So OBVIOUSLY cupcakes are a MUST and I will be making two dozen after work today!) :-D

Well back to work with me! Just wanted to let all of your worries, over my minor depressed state, ease so "don't to cry for me Agentina..." (sorry, having a musical sort of day). I will still be smiling next time you see me. Dancing randomly and always giggling over my adventures. And on the same note, mom is still goofy and happy, just tired from the treatments, and she is looking forward to the next adventure ahead. :)

I will try to capture as many images as I can tomorrow and post them in the next week! Thank you all for being such a wonderful blessing in our lives! Talk to you more tomorrow!

Another Week, Another Adventure

So apparently it's been a little over a week since I last checked in with all of you. In the meantime, mom is now inpatient going through her last day of chemotherapy (today) and one day of radiation (tomorrow, we held two "Care Conferences," and are all working on continuing to breath, taking each day in it's turn and not racing ahead of ourselves (or maybe that's my current mind's focus).

Mom's current status is frusteration and a bit of loneliness, or at least it seems to have been the few times I have made it in to see her. She's frusterated with having to continue to wear "Joey" (her external defribrillator), more leads with electrodes attached (to assist in monitoring her heart), and these are all in addition to her new "port" (catheter that goes straight into her heart, it's like the PICC line before except this one's through her chest instead of her arm and it's wider in size).

So over all she looks like a BMT science experiment. Her eyes still twinkle at times, but she's having a MUCH harder time this time around keeping her spirits up. The break out into the world for that month really improved her spirits as well as her heart and as a result she's getting stir-crazy in her current small space with her lines serving as her "ball and chain". So if you have a free moment some time to go visit her, for 15-20 minutes, the social interaction really can make a difference in her mood. When I was there yesterday, because of my sheer exhaustion, I fell asleep and even then she said it was "just nice to have a presence there" with her.

Just a reminder, though she is labeled officially as being in "isolation," she is NOT in a bubble, she's in a room. This means that as long as you are healthy and haven't been exposed to any illness recently you are good to visit her-she REALLY needs the company. Please just call her before going to make sure that day will work for her as well! Thanks :)

As for the Care Conferences, to be completely honest I was VERY dissappointed with the number of people who attended. Mostly because I personalized the percentage of people who attended from the number we had reached out to. Out of the 300+ that we communicated the event to only about 15 people showed up between the two sessions. The two biggest things I was reminded of by the participants of the sessions were:
1. Numbers aren't what you need to look at, rather look at the support of those who are present and can be used to reach others around them-spreadding news word of mouth. So think of it more as a networking experiment.
2. The title of "conference" sounds more like a lecture than a gathering of people with a common passion (my mom) so this likely drove some people away who would have happily been there otherwise.


So for those of may have even the slightest intention of signing up to volunteer for one of the MANY options in the future (including: driver, errand runner, overnight caregiver/support person, daytime caregiver/support person, meal provider, etc...believe me there will be countless opportunities in the future). Please send me your email address at: wolkate@bethel.edu so that I can add you to our volunteer website. Then you'll be able to access the universal calender with the various "activities" for mom whenever you choose. This is NOT pressure being applied to guilt you into helping us. Rather this is us offering opportunities for all of you incredible people out there a TANGABLE outlet for your love and concern for our family. I would be happy to explain more about this if you have questions, again just shoot me an email!

The other portion of the conference was about a fundraising event in the future, hopefully in the middle of July 2011. So keep an eye out for details on this!

We woud love to hear more feedback from all of you, what is working for communication or future plans, etc I love hearing new and fresh ideas/questions and being challenged in my thought process by all of you. We LOVE creativity and new ideas-so if you've had something on the back of your mind give me a shout out in an email about how to improve anything!

Quick summary about me:
I am happy, but at the same time overwhelmed and burning out. So social interaction: sitting with me or giving me a hug, a random text or phone call really blow my mind right now and keep me smiling for days. It's incredible how much compassion we have that we can share with others. Back to my quick summary, I am trying to exercise more, taking my anger/frusteration/etc to the streets for a nice run, or mediation and other practices to maintain my mental health through (http://www.pathwaysminneapolis.org/). They have been an incredible resource and outlet! Emotionally each day is it's own individual rollercoaster. But I give all credit back to all of you, without you I wouldn't be able to get out of the bed in the morning and keep on running this marathon. Your prayers and continued to support are beyond measure in their ability to sustain all of us right now. So to all of you incredible, marvelous and beautiful people "THANK YOU!!!"

Well back to work for me. Try to post again soon!

Oh BIGGEST NEWS: Mom's transplant is this Wednesday the 15th so I will try to post ASAP after that but PLEASE keep prayers going strong that day and beyond for continued good health of mom and mental endurance for all of us. That day will be the starting day for a whole NEW adventure!

Much love and appreciation,
Kate

wolkate@bethel.edu

These are a few of my favorite things...

The title of this blog was inspired by the ever wonderful Julie Andrews (http://www.youtube.com/watch?v=3tDXtrLRDN0&feature=related) and all the musicals I adore...

This is my on-going list of self discovery and things that I enjoy :)

1. I love dancing randomly (includes random dance parties) and watching other people dance (Ginger Rogers and Fred Astaire always make me smile)
2. I love laughing (and making others laugh)
3. Hugging if my favorite activities in the whole world, next to laughing
4. I love running, skipping, jumping, swimming, playing Frisbee, and generally being active
5. I love taking time to read a wonderful book
6. I love sunrises and sunsets
7. I love my mom, sisters, dad, step-mom, and all the rest of my marvelous family and friends!!!
8. I love walks-around my neighborhood, in parks, anywhere...
9. I enjoy sleeping in, since this rarely happens I truly treasure the moments it does.
10. I am an avid movie collector-I LOVE FILM!!! Specifically the moment I stop being aware of myself and the world around me and I am absorbed into the world the artist has created.
11. I love art-specially local artists!
12. I love movies in the park
13. I love breathing in deeply when walking past lilac trees and jasmine
14. I love to smile
15. I love laying on my back in the grass and looking at the stars
16. I love to find new foods to try and LOVE international cuisine
17. Breakfast is my favorite meal of the day and I am happy to eat it for all three meal times during a day-specially at Mickey's Diner in Saint Paul! :)
18. I LOVE the farmer's market
19. I love music! (specially discovering new favorite artists).
20. I love my passion/zest for life.
21. I love compassion
22. I love volunteering and taking time to help others
23. I love catching up with old (and new) friends
24. I love randomly dressing up in unusual outfits (ugly sweater parties/zombie pub crawls). This could explain why Halloween is my favorite holiday...
25. I love water-specially the ocean. But I also love lakes and rivers
26. I love camping
27. I love discovering fun places to eat/drink/be merry that are walking distance from my house
28. I love to hear about people's adventures in life, they inspire me to do more in mine
29. I love to blog/journal
30. I love getting enough sleep and feeling well rested the next morning
31. I love hearing childrens laughter
32. I love eating dessert first
33. I love making new friends (even though I get shy and nervous around new people)
34. I love a good beer on a warm summer night and baileys in hot chocolate during winter.
35. I love to cuddle
36. I love my (realistic) optimism about life
37. I love discussions about faith, life, and how to change the world
38. I love songs that pull me closer to my self (either emotionally or mentally). I also love powerful/moving lyrics. Current examples: Iron & Wine's "Walking Far From Home" (http://www.youtube.com/watch?v=fg5403yj4II&NR=1) and the Yeah Yeah Yeah's "Hysteric" (http://www.youtube.com/watch?v=93B2mSx6jjg)
39. I love taking pictures of life as it happens
40. I love my home
41. I love feeling comfortable in who I am
42. I love "people watching" (especially seeing joy and love in a stranger's eyes)
43. I loving knowing tomorrow is a new day and each day is a gift
44. I love seeing rainbows (double rainbows blow my mind)
45. I love movie previews
46. I love receiving snail mail/having a pen pal
47. I love being able to share my acquired knowledge with others and being able to help them understand (as well as learning from them in turn)
48. I love dangly earrings and other jewelry I can play with
49. I love the idea of traveling internationally and would love to in the future
50. I love bonfires, smores, and grilled food

(Well that's a start, to be continued) :)

Ping Pong and Doctors

So for the last month or so I have visualized mom's (ECHO) Cardio doctor and mom's primary (Hematology) doctor as two opponents playing ping pong. They hit quick and hard balls into each others court, waiting and anticipating each other's responses. As observers of the rapid fire game, we would only catch what the outcome of each play was and wait to see which opponent would win out. Back and forth, back and forth.

The cardiologist was of the opinion that mom's heart was badly damaged, but that her AML would likely relapse before they could get her heart back to "healthy" standards. (That typically takes a minimum of 6 months). So he suggested that she proceed with transplant as soon as she was "symptomatically" healthy and they would CLOSELY/daily monitor her heart's output and adjust as needed on an inpatient basis. Though he would prefer to wait as long as possible-without risking mom's health-so the heart could improve.

The hematology doctor agreed with the cardiologist but wanted to get mom inpatient as soon as possible to prevent a risk of relapse of her leukemia. He, and my mom, really started pushing for transplant sooner than later as soon as she was outpatient. He agreed that mom needed to have a healthier heart but her AML was too aggressive to wait very long.

About two weeks ago, around the time of my last post, the two of them apparently talked to each other-instead of just reading each other's notes. (And the ping pong morphed into a dance, fast quick but in the same direction). Both doctor's agreed that mom needs to get to transplant- while she's still in remission. But her cardiologist insists on continued support, once mom goes inpatient, to monitor her heart. The hematologist agreed.

And so the follow up appointments with each of them individually continued. On the 25th we met with her cardiologist (after a ECHO to check on any improvement of her heart's output). It HAD IMPROVED!!! It went from 15-20% ejection fraction up to 30-35%!!!! (Technically anything below 30% is still "heart failure" and 40% is need for transplant but that is SHOCKING improvement for only one month outside the hospital!) :-D

Back to the cardiologists' analysis....He stated that mom again has 2 options:

1. Wait for 6 months, and see if the heart improves. (Though he noted at this time, symptomatically she's improved and it is possible that her improvement will "plateau" soon and not be able to improve any more. There is also the risk that her heart may never improve. So with that risk to consider, option 2 would be more highly advised).

2. Mom goes inpatient for transplant, and the day before her chemo (pre-transplant) starts cardiology will do an entire work up on her just to make sure they are fully aware of the risk and continue to support her through her transplant process. *He seemed to support this assessment* He stated, "We will be in tuned and ready. But we CAN'T eliminate the risk...This is not unfeasible. We have done this before for patients far worse than you. And it's better that we go in prepared. All things considered (and that you still have transplant to go through) you've made exponential progress. BUT we still have MAJOR obstacles ahead."

AND back to the hematologist/overall plan...

At this point, because of mom's heart's improvement, we are proceeding forward with transplant!

The details of the risk/process with be discussed in further details at mom's care conference-on the 8th and 11th-check caringbridge for the details. But here's a general summary for you:

Mom's pre-transplant prep will be less aggressive-since she's already in remission. The chemo and radiation they use will be a less aggressive dose, because there are less leukemia cells to get rid of and those left over can be killed off by the cord blood cells when they are entering mom's blood system.

The (double)cord blood's "engraftment" (attachment to mom's bone marrow and development of new cells/ "takeover") usually takes about 3 weeks (at a minimum) after the transplant occurs. Once mom's counts and appetite have come back and she is able to exercise regularly she will then be discharged. Likely between weeks 3-8 after transplant (depending on whether she has a successful engraftment and whether any infections or not). At this point the real battle begins and we will need all the support we can get!

The risks post transplant are:
- Rejection of the cord blood cells/ "graft failure"
- Infection
- Graft Verse Host Disease (GVHD this can be Acute-temporary, or Chronic-continual)
* This is when the cord blood cells are attacking mom's cells and can cause a physiological reaction: in the skin, liver or kidneys. This can present as nausea, vomiting, diarrhea, dry eyes, dry mouth, and skin rashs).

I will try to go into further details about the transplant and post transplant process in the next blog. Just wanted to give you the general summary of the last few weeks! Thanks everyone!

And again if you have the time to come to the care conferences I know it would mean a lot to us and likely help all of you understand more about mom's current journey and what to expect in the future! Details on the two sessions are on her caringbridge! Hope to see you all there!

A Time of healing, A Time for Planning...

The following is a song currently playing on repeat in my head :)

Words-adapted from The Bible, book of Ecclesiastes
Music-Pete Seeger" To Everything (Turn, Turn, Turn)":

"There is a season (Turn, Turn, Turn)
And a time to every purpose, under Heaven

A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep

To Everything (Turn, Turn, Turn)
There is a season (Turn, Turn, Turn)
And a time to every purpose, under Heaven

A time to build up,a time to break down
A time to dance, a time to mourn
A time to cast away stones, a time to gather stones together

To Everything (Turn, Turn, Turn)
There is a season (Turn, Turn, Turn)
And a time to every purpose, under Heaven

A time of love, a time of hate
A time of war, a time of peace
A time you may embrace, a time to refrain from embracing

To Everything (Turn, Turn, Turn)
There is a season (Turn, Turn, Turn)
And a time to every purpose, under Heaven

A time to gain, a time to lose
A time to rend, a time to sew
A time for love, a time for hate
A time for peace, I swear it's not too late"
~~~~~~~~~~

Onto update time-warning this was a reality check for me so it may be a bit of a shock for you all as well. But the truth and honesty are a very important part of our lives right now so I will try to be as open and honest as I can right now...

Options:
1. Wait for heart to recover (at least 6 months)
2. Go to transplant without a perfect heart (even with a healthy heart 1/4 patients do not live beyond 6 months and 35-40% of people relapse post-transplant)
3. Hospice

Risks:
1. IF the leukemia returns-while waiting for her heart to improve-having a transplant won't be possible. And she's likely have a matter of months to live.
(*The hospital doesn't take patients with 15-20% ejection faction to transplant-however it her case they may not have a choice*)
Ejection Faction= "the fraction of blood pumped out of the right and left ventricles with each heart beat." (http://en.wikipedia.org/wiki/Ejection_fraction)
2. Symptomatically her heart has improved but the bad stuff for her heart is cumulative-they will work to minimize more damage in the future-and IF she is able to proceed to transplant the cardiologists will be watching her like hawks!!!
3. It's rare for healthy hearts to go into "shock" like hers has, but those with heart problems:
- Could die from chemo, during work up week, because of current heart damage
- There was MORE damage to the heart than should have occurred from the regiments she was on-but cardiologist can't figure out what other risk factors were there initially that could have added to her current heart failure.
4. Core blood has a lower risk of relapse
5. 10% of people have graft failure (seen by day 42).
6. We DO NOT want to try a new regiment, we will be staying with the routine regiments used by the hospital for all transplant cases, because it doesn't work well if you adjust the variables (others are double the mortality rates, about 50%) when variables have been changed.

Other notes:
1. "It would have been unacceptably dangerous to proceed a month ago." -Mom's doctor
2. "We should do this before blasts return." -Mom's Doctor
**************************

In otherwords we are waiting, waiting, waiting....now it's us waiting for the team to schedule all of mom's "work up week" appointments(a week of various tests with a final conference with all of the doctors, patient, and family members to discuss the next plans). From our last appointment with mom's primary physician it sounded like the plan is to try our darndest to get her healthy enough for transplant and get her in patient for transplant in less than a month.

So keep the prayers coming! Please focus on her heart's improvement, as well as our spirits, endurance and hope. It's been a rough year so far and I know the only reason we are getting through it is thanks to our strong faiths and all of you. You all are truly angels in our lives! Sending prayers of joy and appreciation out to all of you!

I will try to keep you as updated as I can. It's been a crazy couple of weeks here.

All my love,
Kate

Happy Mother's Day!!!

Good evening team! Looks like it's been quite the delay on my part since my last post, just haven't had much to update you on so didn't want to type meaningless info. Not too much in the way of major updates on mom-still in a waiting period for her heart to improve so we can head to transplant. Though her counts are doing MARVELOUS (daily exponential improvement!) and as a result she's only going to clinic twice a week! Yay mom!!!

These past few weeks as I have been preparing to celebrate on Sunday with my mom, I have also been thinking of four lovely ladies who I know who will be giving birth to their own lovely little ones during the next few weeks. With the young lives entering this world I have taken time to stop and think about all of those who I have lost during my life time, how many lives each of them effected, and how short our time on this earth is. Each life and each death bring with them a renewed hope of our purpose in this world. To serve for a positive good in the lives of those around us. Quite the overwhelming thought to have over a few weeks-if I do say so myself. And with it came a renewed frustration at my compassion fatigue for those around me. Which is not to say that I am completely emotionally withdrawn from those around me, I just have had a harder time empathizing recently-with the exception of my mom, of course.

Back to the point of this blog. Mothers. Mine is doing well. :) She is loving her brief vacation from the hospital at her house and is starting to be granted permission to be more adventurous-taking short walks in the lovely spring air and observing breath taking gardens from a distance. In fact, part of our celebration tomorrow is going to be us looking for beautiful gardens in the area for us to enjoy-without having to dig around in the dirt. (Riskiness of infection and all...)

(Haven't seen the flowers blooming this much, YET, but I know they're on their way! 60-70 degree weather the last 3 days seems to be helping them along...) :)

Other recent adventures with mom, outside her house, have been shopping at "down times" at the grocery store-mom zooming past me in a shooter. (She does WONDERFUL walking but neither of us wanted her to push herself beyond her limit, shopping can be quite the lengthy adventure on one's feet.) And also a brief jaunt over to a not-so-busy Target, by her house, to peruse the incoming spring attire-during which time we found her a lovely "St Bart's" styled sun hat! Which, when worn, makes her look like she just got back from the Caribbean on a lovely cruise...Perfect for a vacation at home!
Other than time with mom, I have been continuing to work the two jobs and trying to catch up on some wonderful outdoor (and some indoor) exercise with friends. In fact, besides a jog/walk with one of my best friends I also tried out a new activity: Laughing Yoga-minimal impact yoga with major cardio and abdominal results! It is what the title suggests constant laughter. (See John Cleese's adventure with it: http://www.youtube.com/watch?v=yXEfjVnYkqM and wikipedia's definition of it: http://en.wikipedia.org/wiki/Laughter_Yoga). Highly recommend it-specially if you are able to recruit a couple of giggling pals to go with you! It's been a busy month so far, curious what the rest of it will hold for me. Well Happy Mother's Day and joyous spring to all of you!

All my love,
Kate

A moment of faith

This morning when I got up I woke up with one thought in my heart "Let us run with perseverence the race that is set before us". I smiled at the thought and tried to recall where I'd heard such a beautiful phrase.




As a runner in the past I have enjoyed the freedom of grabbing my running shoes and water bottle and hitting the road. (I am not a marathon runner or anything of the like, however like them I do enjoy the rush of the wind against my face as I race down my neighborhood's streets and the lasting endorphins after a good jog in the evening).

Yet as I sat down at my computer this morning to work I wondered where I'ed heard the phrase about running. I hopped onto goggle and searched. When the results popped up I was suprised somehow I'ed completely forgotten the possibility that it would be from God's word. The verse is from Hebrew's 12:1:
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. "

I then smiled as I read the verse, thinking about the phrase upon my heart and the one who obviously placed it there. :) Happily settled into my morning and my journey. I finished the rest of the chapter with renewed faith and continued into the rest of a beautifully sunny day.

Blessed day everyone!
-Kate

With the sunshine and blooming flowers, comes a spring time miracle for Mom :)

Mom had her second Bone Marrow Biopsy for her NK cell trial on Thursday. Preliminary results were in Friday, same day the doctor's confirmed that she would be going home with her new BFF "Joey" on Monday. "Joey," as named by by my Aunt Suzie who was visiting with us this weekend, is my mom's new Zoll Lifevest-it's an exterior defibrillator that will keep her heart in check if it decides to get a little rambunctious...(http://defibrillators.us/tag/zoll-lifevest/).



The day of discharge I arrived at the hospital at about 10am for training, unfortunately the nurse coordinator who was conducting our training was delayed by rounds didn't actually get into mom's room until about 11am. After training and our Q&A session was done with her, we move onto meeting with at least 15 other professionals finally leaving the hospital at around 7pm.

During that time we saw a few MARVELOUS FRIENDS (shout out to our individual angels who are such wonderful supports in so many countless ways during this process!!!) who helped move some of the bags and bags of stuff home for mom. We saw various nurses who assisted us in filling mom's "easter basket" (weekly medical pill box) with various colors and shapes of mom's regiments of meds. From there her cardiologist came in to check in and said her results at this point are to be expected and they will follow up with her on the 27th of this month. Around the end of the day mom's ZOLL rep came in, got her fitted and trained in on her new buddy. After we waited another hour or two for all of her meds to be delivered we finally said our (temporary) good byes to all the INCREDIBLE STAFF at the hospital and told them we would see them again SOON for transplant. We all smiled and headed for home.

Mom and her sister got mom, slowly but surely, moved back into her familiar, though exceptionally cleaned home (again THANKS to mom's beloved friends who performed a mini-"Extreme Home Makeover" on her space). And I went off to collect delicious food and other misc items now necessary for the home. The sisters and I gathered in mom's room to help her settle in for the night and giggled together until we all slowly made our way to bed and feel contently to sleep. NOTE: mom's highlight of the day was being able to sleep in HER OWN bed again! :) And sleep a whole night without interruption.

The last few days have been a whirl wind of me heading back to work yesterday (hoping to save all my PTO and FMLA for post-transplant with mom). Quite the change of environment: hospital all day with family and staff that had quickly become friends to a busy work environement with lots of phone calls, paperwork, and meetings with the staff. My brain delayed in it's transfer of roles that it usually allows me to play and I was anxious as a result most of the day. But wrapped up the day with mom and Aunt Suzie with wonderful visits with friends for dinner at mom's house, finishing off a wonderful couple of days with our California visitor with a few laughs with the film Finding Nemo. ("Just keep swimming, just keep swimming, just keep swimming, swimming, swimming, what do we do? We swim, swim, swim" maybe not the best idea for mom right now, but still a fun thought). :)



Over all mom is doing wonderful! Happily settling into her home and the routine of clinic and then a small group of family/a few friends in the evening. She just needs to take the time to rest and move slow. Her montra right now appears to be: "Slow is good. One day at a time. Take time to relax and breath". Which are all wonderful and purposeful in her current journey.


Prayer requests: Good health, quick recovery of her heart and heading back to transplant. I will try to post again next week!

We are truly without words for the angels that God has put in our path during this journey we are truly blessed to have you all in our lives.

If you have the time or would like to be more involved in this journey please check mom's caringbridge- my email address is posted there and I would be happy to invite you to our Lots of Helping Hands site.

Much love and blessings to you all!
-Kate

Mini-miracle...hope in full bloom for spring!!!

So here's the tenative update on mom so far, formal results from the biopsy will be in on Monday. So far they can say that her blasts are still sitting at the 5% they were at, HOWEVER all of her cells have increased by 22% over all so that means this percentage is actually smaller than before. (Or at least not increasing!!!)

In other exciting news:
Mom is being discharged on Monday!!! She will be still recieving treatment outpatient for the next few weeks, and we will be needing lots of support as she prepares to head back in for transplant in a few weeks.

Only bad news is that mom's heart is still having issues, to have it turn around within two weeks is somewhat unexpected. But we need HUGE prayers that her current medications will improve her heart, at this point without her heart improving she will not qualify for the transplant. So while she is at home she will be wearing a harness for a while to keep her heart on track. So again prayers that it improved and doesn't miss-behave at all.

Mom's sister is is town for the next five days starting tomorrow, and with the move on Monday we will be pretty busy. But watch mom's caringbridge and my blog for any further details!

Your continued prayers and support are incredible!!! Happy mini-miracle day and spring to you all! May you all have a blessed day!

Quick update...more to come

Well team,

Mom had one more relocation within the unit tonight (see her caring bridge for details). Her 2nd bone marrow biopsy is scheduled for tomorrow. So prayers that the Leukemia blasts are all gone and we can head on in to transplant! I will try to update again after we get her results back!

Thanks again for all your continued support and prayers!

Spring cleaning-cleaning up the neighborhood

Thanks to the Saint Paul city wide clean up this past weekend I found the inner motivation to do some spring cleaning!

This cleaning was me, and many other people from my lovely city, collecting and disposing of the trash on our streets and side walks. Over a three hour span I cleaned about 1 block (both sides), filled two garbage bags, one bag of recylable products (tin cans and plastic bottles), and collected even more smiles. The weather was marvelous and smiles came from every corner. Many neightbors stopping to say "thanks" for keeping things green. I'd smile and say "hey, we got to keep this world clean right?!"

On my journey I collected:

3 major chuncks of car bumpers (also many broken pieces of headlights)-which one of my new found neighborhood friends helped me dispose of-so I didn't have to carry it with me.
LOTS of pop/beer cans and bottles
Lots of plastic candy wrappers (it was like halloween had gotten buried under the leaves and snow)
Accidently collected one VERY dead squirrel-thank goodness I was wearing workman's gloves and this was near the end of my adventure...ewww!!!

Recommended supplies for anyone who'd like to follow in my footsteps with this theme:
Sturdy (KEY for all of these items) workman-women's gloves
A couple of strong trash bags
A container for recyclables (good to do the clean up a day or so before pick up-so you don't hold these items for long)
An i-pod to get you in the groove-personally, I like Regina Spektor for my dancing/cleaning
An extra person for company, plus it's nice to have one person with the trash bag and another with recycling doing it all by yourself makes it hard to juggle
Water-nearby to keep yourself hydrated and a snack-to keep your energy going



Over all the street looks much better, if I do say so myself. And it's a wonderful reinforcement for the change that one person can have on the world. A few hours out of my day is not so hard. And if it makes the world a better place to live I am all for it. Just call me the Queen of Green!

Hope you all had marvelous weekends too! Happy Monday everyone!

Round 1 of results are in (Including summary of last month)

So re-cap on mom for the last month:

- She had 6 days of chemo: March 11-16th (I donated my NK cells on the 16th and they were marinated in Interleukin 2 (IL-2) and washed) (http://en.wikipedia.org/wiki/Interleukin_2 and http://en.wikipedia.org/wiki/Natural_killer_cell)
- On the 17th she received the transfusion of my NK Cells and her first shot of IL-2
- Over the next week and a half she received 5 more shots of the IL-2 (to keep my NK cells revved up and aggressive so they continued to attack her Leukemia cells)
+ Side effects for her presented as: fevers (101-105), chills, fluid retention-and hard time breathing because of the amount retained, loss of appetite, and nausea which became more and more pronounced over the weeks of treatment.

By the end of last week (25th) her spirits and strength were pretty well overwrought and she's been simply exhausted (I think the last 2 months in the hospital are also starting to wear on her). Her smile and humor are still there but she's been feeling very low lately and having a hard time with her repeat chilling and fever cycles, because of these she's had a VERY hard time getting any sleep which, of course, is wearing on her all the more.

Update from the Bone Marrow Biopsy (drawn on Thursday 3/31/11):
- Mom's Jak2 associated with her MDS and MPD is gone (http://en.wikipedia.org/wiki/Myeloproliferative_disease and http://en.wikipedia.org/wiki/Myeloproliferative_disease)
- Her FLT-3 gene is gone as well (this is related to the AML) (http://www.medscape.com/viewarticle/584889)
- Her blasts are at 4%, however there are two things to keep in mind with this:
1. Her cell counts are INCREDIBLY low right now so it's possible that if they were higher the blasts would be as well
2. If the Leukemia cells (blasts) are still on their way out (dying) they will still show up as "blasts" in her marrow, there's no way to measure their current activity. Even after the second bone marrow biopsy it still may show up on the labs.

So basically the watch and wait period will continue, with another biopsy on the 14th of April.


Prayer requests:
- That her side effects will subside
- That her spirits will return (her current affect and frustration are heartbreaking to those around her) and that sleep will not continue to elude her.
- Strength and fortitude, as well as patience, during these next few weeks for all of us.


I am once again without words to express the outpouring of love and continued support from all of you. You are all genuine treasures and angels in our lives. Thank you a thousand times over. Without your continued support these obstacles would seem like mountains. Thank you so much!

With all my love, Kate

Maybe I spoke too soon-more sweat baths

So latest update on mom: (Just got off the phone with a delirious mother) Yesterday (3/31/11) mom's fevers and chills are back. During yesterday she cycled from chills to fevers and back again 3 times. Needless to say she's exhausted and I spent the 6 hrs with her last night feeding her ice chips, popsicles, and fresca (thanks team for chipping in for those). She finally fell asleep around 11pm last night and I headed home. Apparently since I left she's had her bed and cloths changed 5-6 times because of all the sweating her body is doing. She's worn out and probably running low on liquids, thank goodness she's getting IV neutrition right now. So try not to call her much these next few days she's taking quite the beating. She apparently has also had her white blood cells drop from 1600 to 300 in the last day. Most-likely because of her last round of IL-2 jump starting my NK cells again. So hopefully her leukemia cells are on their way out the door and this is their last hurrah. I will be with mom all of tomorrow. But prayers for her physical and emotional strength right now would be much appreciated. This is been a very hard battle on her system. Thank you all for your continued support and prayers.

Mom's Spa Adventure Continued

So here's a quick update, I will try to get back later to post more. Mom's finally done with all the Interleuken-2 (IL-2) shots, the drug that keeps the NK cells revved up and aggressive. Half way through the doctor's did choose to drop them down to dosages of 2/3 instead of the full amounts. But basically after 2 weeks of non-stop fevering (ranging from 100-105) (AKA "Sweat Spa" treatment) and chills, mom is finally back to better health! (With one last fever of 101 yesterday.) Even her food is coming in fancy bags right now...though liquid form, that way she doesn't have to push herself to eat if she's not up for it. She's also quickly dropping fluid weight that she's retained during this process so if her weight seems different over the next week or so that's why. All of this was within "normal" side effects, infact according to the doctor's she did incredibly well with the treatment over all! :) Her counts are coming up day by day (here's keeping our fingers crossed that they are my cells not hers, in other words non-cancerous cells developing instead of Leukemia cells). Her White Blood Cells have jumped from 200 to 800 to 1000 to 1600 (see her caring bridge for details), needless to say her cells are coming back for the first time since going inpatient! :-D And she is now onto her first bone marrow biopsy today! So prayers that the interior of her person is currently behaving itself as well and that we are on our way to transplant!!! :-D Just wanted to say thank you all so VERY much for your love and continued support you are all part of our "cheering section" that keeps us going! :) With all my love, Kate


****Update****
"Unfortunately I should have knocked on wood before posting. Mom chilled and fevered 3 times today. So here's prayin' that my NK cells are keeping her body busy and that the results come back supporting the fact that all of this stress on her body is actually a good thing." (posted from facebook)

Rest required.

Facebook update: (3/22/11)
"Asking for prayers for Dixie Wolfe. In her own words she had "a hard day today". Spiking fevers of 103+ again (has been on and off all week) and a rash that's now covering her body (red and itchy). Prayers that these symptoms subside ASAP. She's not comfortable at all right now and having trouble sleeping because of the fevers.Thanks ...Team! I'll try to get a blog with updates up in the next day or two."

~~~~~~~~~~~~~~~~~~

Well since the transfusion of my NK cells last week it's been quite the roller coaster ride for mom. She started out day "0" (when she received the NK cells) with shakes ("rigors") and chills. And has progressed to fevers ranging between upper 90's and 104 (yesterday's temp). Though she had managed to keep it down for 1/2 of Monday when I went to visit her.

***correction: apparently mom's temp got up to 105.1 but was down to 101 by this afternoon when I checked in with my sister***

She stated over the phone yesterday that it'd be a "hard day". Her nausea has gotten to the point of being sick, where as during all of her chemo rounds (including this last one) she'd been able to keep her stomach in check. So prayers that the Interleuken-2 (IL-2) lets up a bit on her stomach so she can get a bit more nutrition into her body. Her mood is good, though she's slept the majority the last 36 hours, with the exception of when the times when the fevers are running high.

Unfortunately the fevers are a side effect and can only be treated with Tylenol. She also, on Thursday, developed a nasty red and itchy rash all over her body and because of her current treatment is only able to receive steroid cream instead of IV, because of her current treatment. So over all her body is responding, unfortunately the side effects are to be expected. (http://www.chemocare.com/BIO/il_2.asp)

Ali and I, along with a few family friends, are working on cleaning up the house in hopes that if she gets through this treatment and her counts come back, she might be able to be home for a bit before heading back in for transplant.

For those of you who are not medically knowledgeable, like myself, I will spend a bit of time translating here. I know I've explained the NK cells and IL-2, but the goal of this treatment is to get mom into "remission". In other words get the Leukemia out of her system/so beaten down that her system is weak enough to have the stem cells from a double cord blood transplant transfused into her system. Basically beat her blood cells to a pulp long enough for her body to be reset with new cells from another source. This would basically jump start her system and when the cells are recognized by her body and begin replicating the new cells (engraftment) she would not only be re-enforcing the remission from cancer, but also removing the genetic mutations that have caused her two blood disorders (Mylodisplastic and Myelopoliferative Disorders). Start from scratch and work up from there while establishing a whole new system within herself.


Planning on a Q & A session and/or blog next so if you have any questions please send me an email.