History

Sunday, April 23, 2006 7:04 PM CDT

The ABC’s of April
Inspired by my triplet niece and nephew visitors

A – Aspergillis fungus in my lung showed slight improvement at last chest CT scan. A second strong antifungal drug, Microfungen, (home IV infusion) has also been added. Unfortunately, there is not a way to distinguish between the Hodgkin’s in my chest and the fungus, so I’ll have another chest CT next week to evaluate progress.

B – BMT Dr. Burns has been in touch with Mayo’s Dr. Witzig to let him know the delay in my platelet recovery and they continue to look for new advances in treatments.

C – After two unstoppable four-hour nosebleeds, I had some capillaries cauterized on Thursday and haven’t had any problems since. This is most likely due to low platelet counts. The ENT doc also looked at my vocal chords, as I have been very hoarse lately. Fortunately, no pressure from new neck node growth, just the incessant coughing.

E – Easter weekend was mellow and relaxing, with John and Mom and my favorite egg casserole.

G – GVHD (Graft vs. Host Disease) seems to be in check, as my rash and diarrhea have improved.

H – Hair is coming back, slowly but surely! Eyebrows and lashes, too.

I - If you're going through hell, keep going. – Sir Winston Churchill

J – John is enjoying Minnesota springtime and rides on his Harley. We get out for drives (in the car, of course!) most weekends to experience the nice weather.

K – Potassium and magnesium are still added supplements to my electrolytes.

L – Liver levels continue to fluctuate, probably a result of the antifungal meds I’m taking. This has been a trend with me and does not seem to prompt concern.

M – Mayo’s Dr. Witzig just sent an e-mail: “I can see you anytime - as long as I am here - I’ll work you in. You are special. I am praying for you too!! We need a miracle here.” Yes we do.

N – Next steps are a local clinic appointment tomorrow afternoon, as they continue to monitor my counts closely. I received platelets, 2 units of red cells, in addition to a monthly IGG immune booster infusions last week. Chest and sinus CT scans will also be scheduled.

O – Oxygen only required with exertion these days, so I’m using it less than an hour per day. The week before Easter, Mom and I even got out to do a little shopping. She’s getting to be an expert wheelchair pusher, as my leg strength is still very compromised by the prednisone steroid.

P – Platelet count is still not cooperating for Mayo clinical trial criteria, as the goal is 75,000 and I’m fluctuating between the 25,000s and 40,000s. In the meantime, the local BMT clinic has been giving me transfusions, as my level of prednisone still has to be reduced significantly before the trial criteria of 20 mg per day.

R - Rituxan (Rituximab) is another monoclonal antibody currently being discussed (one I actually haven’t yet had!)) by binding to a specific protein (the CD20 antigen) on the surface of B-cells. From there, it is believed that Rituxan works with the body's own immune system to attack and kill the marked B-cells. Stem cells (B-cell progenitors) in bone marrow lack the CD20 antigen, allowing healthy B-cells to regenerate after treatment and return to normal levels. It has been proven successful in non-Hodgkin’s and exploratory in Hodgkin’s. Side effects are few and should not affect counts.

S – My sense of smell has escaped me (which John thinks might not be a bad thing since I live with him!). Short-term memory has also seemed compromised (which might not be a bad thing.)

T – TPN, the 12-hour home overnight IV nutrition infusion will be discontinued this weekend since my absorption issues are resolved. Weight is still an issue, but at least my appetite is back.

U - You all continue to be so supportive with your cards and prayers.

V – Visitors are still few, and with a houseful of my Mom, Allie and the triplets, two dogs, John and I, everyone has a role. Mine is to nap and read.

W, X, Y, and Z.

Next time won’t you sing with me?
Sash

Thursday, March 30, 2006 8:04 PM CST

Hoping Mayo has “ Rad” New Treatment

At our trip to Mayo last Thursday, we learned that I am a potential candidate for RAD001 (an “mTOR inhibitor vs. a chemo trial). My platelet count has to reach 75,000 (currently at 45,000). My liver levels, biliruben, creatinine, RBC and WBC counts are all within range of clinical trial criteria. I can take up to 20 mg of prednisone a day during the study.

The trial would be a 10 mg pill taken for 30 days, with my local BMT clinic docs carefully following my counts. Mayo is currently treating four other Hodgkin’s patients, although it is too early to tell outcomes yet, though I’m ready to make history!

In two weeks, I will have a chest CT to evaluate the status of the aspergillus fungus in my lung, for which I’ve been taking a strong, but hopefully effective drug called Vfend. Cough, low energy, and lack of appetite continue and I’m still on a low dose of home oxygen.

Since I’ve had almost every chemo for Hodgkin’s, Dr. Witzig explained our difficult situation. We declined supportive care without continued treatment. Radiation is not an option either, since the area has been previously radiated. Surgery is just too radical and risky and not done these days.

Our specific prayers these days are to quiet the recently recurred Graft vs. Host Disease (GVH) which comes with a raging rash (thankfully not itchy!) and diarrhea. Since it’s been about a week that I haven’t been able to keep anything down, I’ve started the 12-hour overnight IV nutrition TPN to help regain strength and hopefully boost platelets for study consideration. A daily at-home prednisone infusion should also help with the GVH.

Clinic appointments continue at 2-3 days per week and we’ll return to Mayo when my platelets reach 75,000. We’ll continue to keep you posted and appreciate your thoughts.

Thanks for thinking of us today.

Thursday, March 16, 2006 6:53 PM CST

No More Flakes!

Between our recent 12 inches of snowfall and my constantly shedding dry skin rash, flakes are no longer welcome here!

At last Wednesday’s appointment, Dr. Burns was supportive of consulting with Mayo for treatment options. (Our trip to Mayo was delayed last Monday due to weather. We have rescheduled the consultation with Dr. Witzig for next Tuesday, March 21.) Dr. Burns set up an appointment with dermatology to examine my rash and I received transfusions of red cells and platelets, as well as a Neupogen WBC booster shot. (Derm took a skin biopsy and confirmed GVHD.) Other results still pending. Temps are down and mouth sores are better.

At that time, they were still concerned about my blood’s oxygen saturation level (SAT), as my shortness of breath continued and I was experiencing confusion and some short term memory loss. I was sent home with an oxygen tank that I wear 24 hours. The tubing from the main unit is the perfect length – it doesn’t quite reach the laundry room or the kitchen!

I’m trying a new oral prescription for cough and switched back to a more powerful antifungal drug as we await additional lung biopsy results. I'm also using a steroid cream to combat the rash.

On Tuesday, I accepted the inevitable once again and had Allie shave my head, as it was falling out at a fast rate from the week of chemo. That night, John disappeared for a while and emerged from the bathroom with a freshly shaved head, just as we had started talking about haircuts and shampoo. What a guy. But those of you who know him already know that.

Thanks for keeping the prayers coming.
Sash and John

Saturday, March 4, 2006 4:46 PM CST

Just another “weak-end” at the Blackfords…

At Wednesday’s clinic appointment, my blood counts were a compromised low from the week of chemo, so they discontinued both oral and IV chemo regimens. I received transfusions of platelets and red cells, in addition to a Neupogen WBC count booster.

Friday morning, we saw the pulmonary team at the U of M. After reviewing my latest chest x-rays and scans, in addition to recent 103 fevers that I’ve been having at night, they are looking for infection. After an extra bag of platelets to prevent excess bleeding, I had an outpatient, sedated broncoscopy lung biopsy that afternoon. I’ve had two of these in the past, both were inconclusive, but they said they got good samples this time and were able to remove some of the mucus that I wouldn’t have been able to expel on my own. Fluid behind the lungs is not significant or a major concern at this point. Results are pending.

Last weekend, I developed mouth sores, so though my appetitive it good, I am unable to open my mouth very far (can you believe it?!?), or chew and swallow without pain. We’re now managing with medication and have cultures pending for a yeast or viral infection. Also could be a result of the recent chemo.

We have a tentative appointment at the Mayo Clinic on Monday, March 13th, but are trying to set something up directly and sooner with Dr. Witzig. Upon my e-mail to inform him of the recent setback, he immediately had two suggestions for therapies, so we’ll be anxious to meet with him. In the meantime, my counts must recover greatly to qualify for clinical trials.

Fatigue and shortness of breath persist, and with each med change, I’ve developed a different sleep oddity – from wheezing/whistling, to talking, to deeply sighing, it is a good thing John is a heavy sleeper!

A leopard-print-like skin rash has developed on my abdomen. It should match perfectly my shoes and bag for Sunday’s Oscar viewing!

Well, Mom is off to the corner Kwik Trip for an Icee and Enquirer (for the crossword!)and John is enjoying an Illini victory. We're looking forward to a visit from Allie next weekend.

Taking it one day at a time.
Sash & John

Saturday, February 25, 2006 1:12 PM CST

This sucks.

We saw Dr. Burns on Wednesday and she confirmed that the radiologist ruled that the increasing nodes in my chest were indeed part of the Hodgkin’s – not an infection as we had hoped. They put me on an IV chemo, Valban, at the clinic and daily oral VP-16 and I’ll return to the clinic next week. My energy level is frustratingly compromised, as I exist in a square between the bedroom, bathroom, kitchen and couch. Coughing and shortness of breath are not improving.

Anti-anxiety, anti-nausea and pain medication help me sleep. We hope the fatigue is an indicator the chemo is attacking the cancer, as this is a new symptom for me. We still have more questions than answers at this point and will contact our physician at Mayo for input as well. Mom is coming tomorrow to help and we continue to ask for your prayers.

Down but not out,
Sash

Monday, February 20, 2006 4:24 PM CST

At Wednesday’s clinic appointment, they were concerned about the worsening cough and shortness of breath. I was also having chest pains relating to the persistent cough. An x-ray revealed that I actually had a broken rib at some point, but it seems to be healed.

A chest CT scan to examine my lungs was ordered for Friday. The weekend BMT doc, Dr. Phil McGlave, called on Saturday to recommend we come in on Sunday for evaluation, as the scan looked worse than the one last month. (More dark areas in the mediasteinal center chest area).

They checked my oxygenation level and were pleased that it was 94 out of 100. My blood counts are still holding, but remain slightly compromised. They could not detect air movement behind my lower right lung – and the scan revealed some fluid on both sides. The team will meet early this week to discuss the best diagnostic technique, as Dr. McGlave feels like it could be an infection.

I am now completely off the Gengraf (CSA) drug, so 30 mg of prednisone a day is my only drug related to GVH and engraftment. Additional allergy pills, an inhaler, cough suppressant, an antibiotic Z pac and electrolytes (mag and potassium) and anti-anxiety pills remain in my drug regimen. I have noticed muscle atrophy above my knees, and occasional joint pain – common side effects of taking steroids for an extended amount of time.

We return to the clinic on Wednesday, where I will receive the five-hour IGG immune boosting IV and results from weekend bloodwork and tests. We will hopefully know more then. In the meantime, please keep us in your thoughts and pray for our caregivers who are making critical decisions for so many patients.

Thanks for thinking of us today.
Sash & John

Tuesday, February 14, 2006 6:19 PM CST

We had a great time in Miami. The weather was divine (70 plus most days), the beachfront hotel magnificent, seafood fare to die for and fun friends to share it all with. A wheelchair at the airport, door-to-door car service on shopping and dining to save extra walking (courtesy of our husbands), frequent naps and lots of relaxing by the heated pool was just what the doctor ordered. With the help of my new inhaler, good pain meds, allergy medication, along with my regular drug regimen, I was able to really enjoy the trip.

We’ll see the practitioner tomorrow, as my oncologist is out of town at a conference. The cough and increased fatigue are still a concern. I anticipate we will have scans in the next two weeks. The January chest X-ray showed slight disease growth in the right medicsteinal area compared to the last scan, which could explain the cough and shortness of breath.

Cultures for influenza and pneumonia were negative. They are still tapering the prednisone and Gengraf (CSA) suppressant drugs to help the new cells work gradually. I have noticed a new rash that may be part of recurrent GVH, which could be a good thing to let the donor cells fight a little harder. The Horner’s syndrome that causes my right pupil to constrict and eye to slightly sag is also sporadic, based on how much rest I get.

I have really gotten into the Valentine’s Day spirit this year, as the prednisone has made my face a heart shape, though I could use some more definition of a chin!

All our love,
Sash & John

Saturday, January 21, 2006 10:12 PM CST

I had my third six-hour IGG immuno-boost infusion on Wednesday at the clinic. Upon examination, Dr. Burns still feels positive and reduced the prednisone dose slightly lower. My other blood levels remain stable, yet somewhat compromised due to the medications I’m taking. I’m easily paranoid by dry winter skin itch, low energy days or this persistent cough, but I am reassured that the recovery process takes time. The recent bone marrow biopsy results continued to show 100onor cells, as sometimes due to GVH or infection, the engraftment process can reverse. So that’s good news!

I’m looking forward to having my central line removed on Tuesday in preparation for a Miami getaway with some friends February 8 – 13th. Having to keep the external lines dry and protected and flushed with heparin each day will be one less hassle we will not miss. The central lines usually stay in until around day 100, but my original line was pulled early after my first transplant due to persistent infections. Fortunately, I will still have my under-skin porta-cath that can be used for infusions and blood draws. My next IGG infusion is this Wednesday.

Mom left on Thursday for Rockford to take the babies for their first visit to Philo. I’m enjoying gradual independence, driving, eating out and visiting friends once again.

One for your “smile file”:
Last week, while in line at Target, I was getting the once-over by a little boy of about six. His stares were obvious, which I am not unaccustomed. He looked at his mom and triumphantly said (in a not so quiet voice, of course), “Mom, I know why that one’s a girl!” She looked back at him and before she realized what he was talking about, he said “’it’s cause she’s got a purse!” Just another time Coach saved the day. And they say that fashion doesn’t define you!

Thanks to all who donated to Jenn Schaal’s LLS Team in Training event and congratulations to Jenn for completing her first half marathon and exceeding her goal by raising over $3,700 in the fight against cancer! You go girl.

We’ll continue to keep you posted.
Sasha

Sunday, January 8, 2006 8:12 PM CST

Taking Care of Business in 2002
Cancer Free in 2003
Pouring More Vodka Lemonade in ‘04
Stayin’ Alive in 2005…

The doc called last Thursday to say that scans looked stable, with some inflammation in the sinus area to explain my persistent head cold. The team modified my medications and my next appointment is this Wednesday. I will receive an immuno-boosting 5-hour IV at the clinic to help my defenses, as many of the medications I currently take suppress my immune system. Mom arrived yesterday and we’re looking forward to a quiet week at home.

Made your New Year’s resolutions yet?

Why not volunteer or donate to your favorite charity? My friend, Jenn Schaal, will participate in the P.F.Chang Rock N Roll Arizona Half Marathon this Sunday, January 15 as a member of The Leukemia & Lymphoma Society's Team In Training, raising funds to help stop leukemia, lymphoma, Hodgkin’s lymphoma and myeloma from taking more lives. She is just $600 shy of her $3,600 goal and we would be honored to have your tax-deductible support this week.

For details, simply go to the secure link below:
http://www.active.com/donate/tntmn/tntmnJSchaal
Let’s help get Jenn across the finish line!

Thanks for all your support expressed in so many ways.
Sasha & John

Friday, December 30, 2005 10:41 PM CST

Check out the new triplet pictures! Go to the shutterfly website and if the ‘View album’ button doesn’t work, copy and paste this link into your browser:
http://share.shutterfly.com/action/welcome?sid=8AbtWbZy3bN2Pv
Hit enter, view pictures and slideshow.

Counting down 2005…
What a 525,600 minutes it has been!

Well, we made it home for a week for the holidays! Our clinic appointment on Wednesday resulted in discontinued home IV infusions and an eagerly awaited switch back to oral medications now that I am able to absorb solids again. My blood counts continue to hold strong, with slight liver level fluctuations.

My hair, appetite, weight and energy level are coming back. The GVH symptoms have subsided, as we went from no drug therapy to full therapy to control a bit more of a GVH response than doctors desired. The good news is that because my body did respond with GVH (also hopefully indicating a graft vs. Hodgkin’s effect), we will not have to return to my donor for another cell infusion.

Dr. Burns remains encouraged that my neck, underarm and groin nodes remain stable with physical examination. My 100-day scans and bone marrow biopsy on January 4th will indicate actual progress. A chest x-ray will follow the next week. Burns explained that she would not be surprised to still see some Hodgkin’s, as the graft vs. tumor effect takes time. The next six months will be critical to determining the “therapeutic dose” of drugs necessary to manage and hopefully eliminate remaining cancer cells!

Despite a productive cough, dry skin from the cortisone creams, and sleep interruptions from the steroids, I really can’t complain. As my reflexes continue to improve, I’ve been cleared to drive short distances to regain my independence. Mom returns on Monday after a visit in Rockford and we hope my appointments will lessen to a weekly basis; we will keep you posted on upcoming scan outcomes and continue to appreciate your prayers while we await results.

As the lyrics in the popular New Year’s Eve song “Auld Lang Syne” symbolize friendship, we celebrate each of you in our lives this year.

Happy 2006!
Sasha & John

Tuesday, December 13, 2005 3:21 PM CST

The 12 Days of Christmas, Revisited

12 – Weeks post-transplant and we continue to be encouraged. Looking forward to my 100-day benchmark!

11 – Days until Christmas, I can hardly believe it! I’ve managed to get some shopping done and have a new appreciation for on-line gift giving. “Simplify” is the theme for the season.

10 – My new pants size since losing so much weight. Hoping to pack on some pounds at Christmas.

9 – Average number of pills I still take each day as antibiotics, antiviral, anti-rejection, antipneunomia, antacid and electrolytes (potassium and magnesium).

8 – Wish I could say I “ate” more these days, but an at-home 12-hour overnight IV nutrition infusion (TPN) has greatly helped my energy level.

7 – Days per week we’re still going to the clinic for blood counts, steroid IV and consult with BMT team. The Graft vs. Host Disease is improving and they feel that my skin rash is better, liver function is also stable, with diarrhea the current main concern. Once I can absorb medication, we can transition from IV back to oral meds.

6 – Average number of trips I take to the bathroom each day.

5 – Favorite foods: smoothies, shakes, Icees, an occasional chocolate or Krispy Kreme. The “metallic” taste seems to have subsided and I’m starting to get my appetite back.

4 – Number of daily Ivs we administer at home to avoid another hospital stay.

3 – Number of babies turning one on the 30th. We look forward to celebrating Allie and Chris’ new home, the holidays and the triplets’ first birthday in the coming weeks. A trip to Illinois will be determined at the last-minute, as we learn how long I can be away from the clinic.

2 – Amazing in-home caregivers in John and Mom. I feel like I have my very own Santa and Elf. John is cooking delightful treats, giving foot and back rubs, administering my home-care like a pro and providing wonderful support as usual. Mom is decorating, shopping, laundering, chauffeuring and enjoying carols with me.

1 – Big wish on our list this year!

Happy holidays to you and yours.
Sash & John

Wednesday, November 30, 2005 11:05 PM CST

Day 67 Post Transplant

First things first: the latest scans looked GOOD! Some decrease in size in the lung nodules, stability elsewhere.

Doc confirmed full-blown Graft vs. Host disease since my appointment last Wednesday. The areas it attacks: gut (raging diarrhea), skin (my rash has intensified), and liver (my counts are elevated and the whites of the eyes are yellow), all confirm need to start treatment of GVHD. We had wanted somewhat of a GVHD response, but this is excessive, and they chided us for not calling the clinic this weekend when my diarrhea became a problem. I told them that after all we’ve been through; my threshold for what is a “problem” is obviously different than theirs.

My appetite is slightly improving, but I can’t seem to keep anything in my system for more than a couple hours. Due to an 8-pound weight loss since last week, they wanted to admit me to the hospital tonight. I promised I would do anything to prevent this, so they gave me IV fluids and started the steroid this afternoon at the clinic, with my vow to return in the morning for more fluids, steroids and Gengraf via IV.

I’m back on Gengraf (Cyclosporin) – orally tonight and IV tomorrow at the clinic. They took a skin biopsy from my left arm today, as well as a stool sample to confirm GVH.

We celebrate the good scans and hope the GVHD will lessen soon.

We are still so thankful.
Sash & John

Sunday, November 20, 2005 4:56 PM CST

Day 58 Post Transplant

We went to the clinic just two days last week, a sure sign they must think I’m doing well. I have an appointment tomorrow (Monday), at which we’ll find out the schedule for this holiday week.

My lack of appetite persists, as everything has a metallic taste. Staff say that is very common in transplant patients. I have lost 10 pounds since coming home from the hospital, not the best way to diet!

Nausea and some diarrhea may also be signs of Graft vs. Host disease (which we welcome as long as it’s controlled). I once again had high ALT liver levels, which could be a sign of marrow of liver involvement, but we’re hoping it has returned to normal as it has in the past. I had a sinus CT last week to confirm no residual sinusitis from the hospital (it was negative). I have a cough again today.

My rash has improved, except for my face, which looks sunburned and is so dry and flaky, nothing works (Cortisone, baby oil, rich face creams, antibiotic ointment). My aunt suggested lard – I’m about that desperate!

Between taking pills five times a day, frequently drinking high protein shakes, flushing my central line with Heparin daily, napping, remembering to use my breathing machine, physical therapy, and taking my temp – my days seem quite full. I do feel like I’m getting stronger each day, and sleeping well at night again makes such a difference.

I’ve felt some potentially new small lymph nodes, which are very concerning. The doc said not to panic, as it is hard to know how long it will take the donor cells to start eradicating the cancer - just as long as the Hodgkin’s doesn’t move faster. They started tapering one of the anti-GVHD drugs, Gengraf (Cyclosporine) to more-rapidly release the new cells to attack the cancer.

I’ll have my “60 day” tests the week after Thanksgiving, so we’re hoping to have something to be extra thankful for.

Mom is headed through Rockford for the holiday, then going home for the next week to winterize and check on things in Philo. She’ll return here in early December, as I still need a continuous caregiver (which she was born to do!).

I’ve been trying to catch up on “thank-yous”, but my writing is still unsteady, so Mom has been my “ghostwriter.” So if you get a note from me, the writing is hers but the thought is mine.

Thanks for your prayers. We still need them.
Sash & John

Wednesday, November 9, 2005 8:36 PM CST

Spring Forward, Fall Back

I’ve been to the clinic every day to receive hydration, antibiotics, magnesium or potassium. Visits last from 4-5 hours, which we hope will lessen with time. On Friday, we noticed the right side of my face and neck seemed puffy, so they ordered an ultrasound to rule out a blood clot. I started getting a blotchy rash over the weekend, along with an infection in my mouth. On Monday, the NP confirmed this is probably the onset of Graft vs. Host disease (which we actually want some of to prove a graft vs. Lymphoma effect). Too much GVHD can occur when the donor cells recognize the body's own cells as foreign and tell the immune system to attack those cells, in the skin, liver or gut. This would be managed with steroids.

Unexplained low-grade fevers persist, and despite Mom and John’s most creative culinary suggestions, no food is appealing, so high protein Boost drinks are my main intake. I feel like I’ve been swabbed, cultured, and sampled in every way this week, and doctors maintain a cautious “wait and see” attitude how these new cells fare against the Hodgkin’s.

Allie came up last weekend and Mom went to Rockford to help with the babies during sis’ first time away. It was great to see her, and she welcomed the chance to take care of one instead of three!

We appreciate your continued prayers to spring forward.
Sash & John

Wednesday, November 2, 2005 9:02 PM CST

Home by Halloween…
Trick or Treat?

After being granted a three-hour pass for a “trial run” away from the hospital on Monday night, I was finally discharged yesterday after 46 days. It is so nice to be home! I’m surprised how weak I am, as stairs, a shower, or a trip to the car leave me short of breath. With cold and flu season upon us, I have to wear a thick surgical mask to clinic visits, which contributes to the breathlessness. Renewed strength will come every day, I just have to remember to be patient. We’re still a few weeks away from visitors, as staying infection-free is critical.

Mom and I returned to the clinic today, where they were very impressed with clear lung sounds, strong white and red cell counts and no other real complaints. I still don’t have an appetite and received IV fluid for dehydration. My pill box is a bit overwhelming, as I take one of the drugs five times a day, plus a boatload of others in the morning and at night.

We received word that the donor cells are 100 percent engrafted, which is great news. Now, they just have to fight the Hodgkin’s cells. I hope now that I’m home, the true recovery process can begin.

Thanks for thinking of us today.
Sasha

Monday, October 24, 2005 8:47 PM CDT

31 Days Post Transplant
(38 Days in the Hospital)

I feel like I should start making hash marks on the wall for each day I’ve been here. Good thing we can wear our own clothes, as an orange jumpsuit (AKA hospital gown) isn’t my color.

My platelet count and white cells are good. We know the cells are engrafting, and should know more in a couple weeks. Fevers are gone. Recent bone marrow biopsy was clear and 28-day scan looked stable for Hodgkin’s. The itching is still gone.

Our current challenge is this parainfluenza virus (which I may have contracted from the water here!) that is causing weakness, major shortness of breath and fluid retention in and around my lungs. Docs seem to be stumped and stopped a 2 cycle course of an unpleasant 8-hour Ribovirin overnight breathing treatment, as the cultures continue to test positive. I also developed a sinus infection last week and am back on oxygen for daily activity.

A day in the life…
4 a.m. Blood draws, vitals
7 Weight check to determine need for lasix for fluid retention
8 Visit by resident team
9 Try to determine what looks best on breakfast tray and take 20 pills
10 Breathing treatment (nebulizer)
12 Days of Our Lives!
Lunch
Afternoon - insert naps as possible
Visit by BMT doc
Vitals and more blood draws
CT scan, chest x-ray, EKG or some other test
Physical therapy or occupational therapy
Nebulizer treatment
Oprah!
Dinner tray and another 15 pills
John arrives for the night

Mom comes during the day and John spends nights here with me. They have to gown, mask and glove in the room because of the parainfluenza.

Docs are talking about sending me home sometime this week. We ask for your specific prayers to help my already-compromised system fight this virus, so we can get to the task at hand – letting the new cells fight the Hodgkin’s.

Hoping to make a jail break soon,
Sash

Sunday, October 16, 2005 7:29 PM CDT

Happy Fall ‘Yall!

Good things: my temps have subsided and my lungs sound clearer from the parainfluenza, I’ve fininished the 5-day Ribovirin nebulizer, and just have regular nebulilzer treatments four times daily. On Monday and Tuesday, I became quite confused, whether it was a result of drug interactions, fevers or something else, it is unknown. I had a Foley catheter placed early in the week (no anesthesia!), a bronchoscopy, and what seemed like a battery of other tests. I was put on IV nutrition, as nothing sounded appetizing. I’m seeing an occupational and physical therapist, as it’s amazing how fast one loses strength after almost 30 days in bed. I’m happy to be feeling better, as are my Mom and John.

We appreciate your continued thoughts and prayers.

Sasha & John

Thursday, October 6, 2005 8:30 PM CDT

Due to unexplained temps and persistent cough, I’ve had a CT scan and two 2 chest x-rays this week, and remain on a low dose of oxygen. The team debated a bronchoscope to take a sample from the top of my lung, but the pulmonary nodules in question are in the lower lung, so an upper-level bronchoscope wouldn’t be helpful. Since it looks most like influenza similar to RSV, they are aggressively treating with strong antibiotics, in the form 6 10-hour Ribaviran overnight nebulizer treatments. Everyone in the room, even Mom and John, must be masked, gowned and gloved for their protection from the drug.

All I want to do is sleep – in fact, I fell asleep on the phone with a friend this week! The good news is that my white counts are climbing and overall, I just feel like I have a bad flu (without nausea). It’s a struggle to determine food that sounds good, but Nurses Mom & John are ensuring my food intake.

We’ll continue to keep you posted, and appreciate your prayers.
Taking it one day at a time.
Sash & John

Sunday, October 2, 2005 10:29 PM CDT

9 Days Post-Tranplant, 6 Years-Post Wedding

We celebrated our anniversary today the way most couples do. We slept late (separate beds unfortunately), were served “breakfast” in bed, staff changed the sheets and cleaned our room. We had guests throught the day, usually every fourth hour to check vital signs. I started loosing my hair again last night, so we both shaved our heads again tonight. John surprised me with a wedding cake topper treat.

My fevers and cough continue, so I’m takings strong preventative antiobiotic drugs. I slept for two straight days over the weekend, and still nap quite often. No other changes to report. Mom arrived today and will start hospital shifts to relieve John.

Enough of the “in sickness” part – ready for the “and health!”
Sasha and John

Sunday, September 25, 2005 3:45 PM CDT

My new mantra: “BE POSITIVE!”
Ironically, donor stem cells do not have to be the same blood type as the recipient, so over the next weeks (we hope!), my blood type will transition from O to “B positive” like my donor. It’s a good sign.

The transplant went well. They ran a fluid IV flush the day before which continues, so I’ve been retaining water. Slept a lot yesterday, but made it up onto the treadmill for a bit today. My once ravishing steroid-induced appetite is waning. They continue to take vital signs and blood cultures regularly, ready with powerful antibiotics if I run a temp over 100.5. I'm getting regular magnesium and potassium supplements, platelets and anti-rejection drugs. The BMT Team said I should expect to feel about the same as I did during last week's chemo in the days ahead, if all continues to go well.

Some positive things I’ve already identified if I’m stuck in this 10X10 room:

The season’s new shows started this week, so TV will be good.

A secret supplemental menu, so that I may divert from regular hospital fare.

Unlimited Shasta lemon lime sodas.

Warm blankets.

A nice view of changing leaves as we begin my favorite season.

Ice cream counts as a "fluid" as they track my inputs/outputs.

We’ll keep you posted (positively!),
Sash & John

Friday, September 23, 2005 3:55 PM CDT

Day 0 - To new beginnings!

We’re still awaiting the arrival of the “miracle” cells from the top secret destination. We originally expected them mid-day, but as it turns out, they will be arriving by air tonight around 8, processed here and I will receive them around midnight. Donor collection through bone marrow aspiration was probably this morning. The “transplant” itself is not surgical, and I remain awake during the hopefully-noneventful 30 minute procedure as stem cells enter my bloodstream by transfusion. The cells find their way naturally to the marrow spaces of the bones. Once there, they begin to grow and multiply, repopulating the bloodstream with white cells, red cells and platelets.

We pray that this process of “engraftment” occurs quickly and ahead of the growth of the resistant Hodgkin’s. Daily cell counts will determine my ability to leave the hospital and begin daily clinic visits from home. We are assured that my current isolation room is the best protection from infectious agents, as infections can prove fatal for patients receiving allogeneic (donor) transplants for months and potentially years post-transplant. We appreciate your patience with delaying visits until we are absolutely certain that my immune system can handle it. In the meatime, your calls, cards and care packages are highlights of my days.

We will continue to keep you posted and ask this prayer today:

“Pray for God to make His presence known to Sasha; for wisdom for the doctors and protection over her as she prepares for this upcoming procedure; for the peace that surpasses all understanding to cover Sasha and her family; and for the Great Physician to anoint her with His supernatural healing power.”

We feel so loved.
Sasha & John

Friday, September 16, 2005 9:10 PM CDT

I checked into what I keep inadvertently referring to as the “hotel” instead of “hospital” today.

We had a great time in St. Louis last weekend and came back to a battery of tests on Tuesday, including bone scan injection and bone scan, CT scan, pulmonary function test, blood work, signing of consents, chest x-ray, and EKG. Wednesday was a MUGA heart test and I spent a quiet Thursday at home packing my life for the next four to six weeks.

We met with Dr. Burns this morning to once again confirm our agreement to proceed with this high risk, high reward procedure. After a consultation with radiology regarding my low dose total body irradiation (TBI) that I’ll have on Thursday before the transplant, I had a central line placed in my chest through which to receive the stem cells. We got an unexpected free pass to go out to dinner tonight, far superior to the "room service" meals around here.

Fluid IV starts tonight and chemo begins tomorrow: Cytoxan, Fludarabine, Allopurinol, ATG and Methylprednisone steroid. ((Not exactly a cocktail you'd find in a mini bar!) Drugs reduce until radiation next Thursday, with the transplant to follow on the 23rd. Mom will arrive on the 28th and we’ll take things one day at a time post-transplant. We'll hope for a speedy check-out.

"Do not disturb" - Cell phones are prohibited on the wing, so e-mail, the guestbook or the room phone are the best way to reach us. The hospital address and our room information are below.

Still awaiting room service and fluffy robes,
Sasha & John

Thursday, September 8, 2005 5:49 PM CDT

Q: What did the monkey say when he got his tail got cut off?
A: It’s not long now!

I received the call this morning that the donor prefers September 23rd as stem cell collection date, so the transplant schedule is tentatively set! My “work up” week of restaging and testing begins next Tuesday when we return from St. Louis. I should be admitted to Fairview University Hospital next Friday the 16th for a week of chemo, some radiation and preparation for the transplant on the 23rd. Four to six weeks of hospitalizatoin will follow, with daily clinic visits after that. Visitors will be limited. With earlier benchmarks, the "100" day mark is critical in evaluation of success of the procedure.

We’ll see the doc in the morning for more details, but wanted to share this with you all before we go out of town for the weekend, a time that is suddenly more special as the next few months we will be staying close to home.

We feel excited and exhilarated, fearful yet faithful, eager but anxious, though most of all never alone. Thanks to all of you for your continued messages of hope.

Living strong.
Sasha & John

Check out the new triplet pics in the link below!

A few more tranplant details:
Allogeneic
The stem cells come from a person other than the patient. The stem cells may come from a related donor [sibling(not a twin) or other, close family member], an unrelated donor or umbilical cord blood. My transplant is considered a nonmyeloablative unrelated donor transplant with a 6 out lf 6 antigen match!

Unrelated Donor Transplantation
Researchers continue to make progress and are currently working to reduce side effects when using marrow from unrelated donors. They are also investigating new drugs that may reduce graft-vs-host disease (GVHD), a potentially major complication of BMT in which the donor cells recognize the body's own cells as foreign and trigger the immune system to attack those cells.

How does one find an unrelated donor?
Registries of stem cell donors exist to help patients seeking a transplant. Your transplant center can help you find a donor utilizing these registries. For more information contact the National Marrow Donor Program at 1-800-526-7809.

FAQs
For a list of frequently asked questions or more information, visit the Bone & Marrow Transplant Program link below.

Monday, September 5, 2005 10:24 AM CDT

Trying to Make it a Non-Labor Day!

Greetings from Tripletville! I was fortunate to find a ride with a friend driving south for the holiday weekend and have been enjoying naps, shopping and good food with family and the babies in Rockford this weekend. In our traditional spa experiment, Allie dyed my very short dark hair a platinum blonde. I think I'm having more fun already!

We received good news last week that the adult donor match agreed to participate and had their initial physical on Friday. The doc at Mayo said that I could go through one more cycle of this 7-day Ganite pack, but at the rate things are moving, we may be ready for transplant before then. CT scans from the past three months continue to show stability and slight improvement.

I’ll return to the clinic tomorrow and Friday for reduced steroid doses and then get unhooked from my 7-day chemo pump on Thursday. I’m anxious to be rid of the steroid side effects, as my face is quite puffy and insomnia is still a problem.

We’ve planned an early 6th anniversary getaway to St. Louis next weekend, so I’m looking forward to a short week!

Just like “Diddy”, hoping to loose the “Puffy” soon,
Sasha

Monday, August 29, 2005 6:43 PM CDT

“It is part of the human spirit to endure and give a miracle a chance to happen.”
- The Anatomy of Hope

After a weekend of severe leg and joint cramps from the steroids, it was decided to begin weaning me from the high dose Medrol in preparation for transplant. At the risk of infection with such extreme quantities of steroid, reluctance to undergo additional therapies that could jeopardize my chance at a successful transplant, and no other valid long-term alternatives, the teams at the U of M and Mayo agree this is our best option.

I will begin another 7-day continuous infusion of Ganite chemo on Thursday, followed by two weeks off for optimum disease response, with the transplant work-up week at the end of the month. The donor search was reactivated last Friday, so if all goes well, I could be in transplant mode in early October. If there is a delay or conflict with the previously contacted adult donor, we will proceed with earlier-identified matching cord blood stem cells.

We are glad to have a tentative timeline and are reminded of the irony of the definitions of “patient” when referring to: “one receiving medical care” and “capable of calmly awaiting an outcome or result in trying circumstances.”

The ever-patient patient.
Sash

Monday, August 22, 2005 8:43 PM CDT

If ice cream cured cancer, I would’ve licked this by now!

We went to Mayo last Thursday to be disconnected from my 7-day chemo infusion pump. Witzig felt I’m “holding my own” and couldn’t feel any growth in my neck or armpit nodes. CT scans in two weeks will determine progress. Itching is down; appetite and insomnia up from the steroids, with occasional nosebleeds, bruising and cough.

On Friday, I received the steroid, red cells and platelets at the local clinic to “tank up” for a fun weekend with family. Today, counts were beginning to climb closer to normal and a low potassium level was resolved. I’ll receive steroids on Wednesday and Friday and Mayo’s Dr. Witzig will contact my local doc to discuss criteria for transplant and next steps. Mom is staying with me this week, as John has out of town travel with work.

We continue to appreciate your prayers for strength of mind and body during this long journey.

Off on an ice cream run…
Sasha

Monday, August 15, 2005 12:15 AM CDT

You take the good. You take the bad. You take them both. And then you have… my latest update.

1 Year, 2 Days Post Transplant

After a fun-filled weekend in Chicago, I’ll return to the local clinic this afternoon for my tenth steroid dose. My infusion pump fanny pack is a constant companion until Thursday, but I keep reminding myself that it’s much better than being tethered to an IV in the hospital for a week!

I made it through security with little fanfare, and attracted more attention with my “Best Hair, Class of 2005” t-shirt than with the chemo pack. I’ll have another steroid infusion Wednesday, followed by a trip to Mayo on Thursday for consult with Dr. Witzig and disconnect from the pump. Scans to follow will determine next steps.

Side effects remain few and we hope my blood counts rebound soon with limited need for transfusions this week. We’re looking forward to a visit from John’s parents and my Mom on Friday.

Sit, Ubu, sit. Good dog.

Sash

Monday, August 8, 2005 7:13 PM CDT

Mama’s got a brand new bag!

After a good appointment today at Mayo with the cautiously optimistic Dr. Witzig, it was decided to continue my high-dose steroid with the addition of Gallium Nitrate, a chemo drug that I have not yet had. The drug will be administered continuously for seven days through an ambulatory infusion pump (like a fanny pack) that will be connected to my chest porta-cath. After two weeks off, we will return to Mayo to determine if therapy should be repeated on day 21.

Additional chemo regimens that we had discussed are not an option at this time due to my compromised blood cell counts. Within two weeks, another new drug RAD001, will be released, which we hope will hold promise. An additional antibody therapy, Basiliximab, has had anecdotal success with biological soundness, but little data with lymphomas.

My steroid side effects continue to be insomnia, increased appetite and joint pain. Liver levels continue to fluctuate, and risk of infection is our primary focus. My platelets are still recovering, so bruising and lesions from scratching are healing at a slow rate. A slight cough emerges with exertion, but I continue to enjoy a relatively normal schedule (with plenty of naps).

In anticipation of few side effects with the Gallium Nitrate infusion pump, we will go forward with our plans to go to Chicago for a Cubs/Cards game this weekend. After my local clinic visit on Friday, we’ll fly out with a small additional carry-on accessory.

Thanks for thinking of us today.

“The only thing that separates us from the animals is our ability to accessorize”.

Sash

Monday, August 1, 2005 8:14 PM CDT

In the words of a friend last week, I’ve spent the first 30 years of my life perfecting the art of sassiness, now I can look forward to 30++ more years of living it!

What a wonderful 30th birthday I had! Despite the baldness and lazy eye, it was a year I won’t soon forget. The flowers, gifts, calls, e-mails and well wishes from friends far and near were truly touching. Thank you all.

In the “it’s worth a shot!” department, I met with certified naturopathic practicioner Helen Healey at Wellspring Clinic in St. Paul last Thursday. Her philosophy combines clinical nutrition, homeopathy, botanical and oriental medicine for whole-patient holistic wellness. After an overview of an array of natural treatments, I had my BMT clinic pharmacist review the list for potential drug interactions and recommendations. They narrowed to list to include Vitamin C, carotene complex, coenzyme Q10, soy, vitamin A, zinc, green tea, garlic, melatonin and flax seed to start. A trip to the natural foods store this week will begin my new regimen. I’m hoping to combine it all into one big anti-cancer smoothie!

After today’s fifth infusion of high dose steroid, I spoke to my Mayo doc, Witzig, by phone and agreed to see him on Monday for scans and determination of next steps. The steroid seems to be keeping the cancer in control, as last week’s chest CT showed slight improvement in the left chest tumor. The high temp localized needle-guided radiation is not an option at this point, as the mediasteinal tumor is too close to my heart. There is an antibody therapy that he may consider.

My counts are still compromised from the latest clinical trial, so I received platelets and red cells two days last week and today. The Horner’s syndrome in my eye has also stabilized. My hair is coming back dark and fuzzy and the itchiness is manageable once again. We’re just awaiting the desired response rate to “pull the trigger” to proceed with the next transplant. Mom (AKA SuperNurse) flew in last night to help for the week and accompany me to clinic visits.

We ask for your prayers for wisdom for the doctors in making the next critical timing decisions.
Sash & John

Saturday, July 23, 2005 12:11 AM CDT

OK party people! Here’s the latest scoop we thought you should know, then we can start the birthday celebration!

On Thursday, I awoke with a lazy eye on my right side. We dismissed it to sleeping pills or a new anti-itch medication I had just started taking. That afternoon, we noticed the pupil was significantly constricted and the eyelid continued to droop. I called my doc at Mayo and he suspected Horner’s Syndrome, and we made an appointment to see him on the trip back from Allie’s yesterday.

I met the ophthalmologist and had eye tests with a 5% liquid cocaine solution. I asked for extra, it being my birthday coming up and all, but no luck. (Smile.) Two more eye tests on Tuesday will confirm the general suspicion of Horner’s - an interruption of the sympathetic nerve fibers which start in the hypothalamus (a central brain region) and run via the upper spinal cord near the carotid artery. Who would have guessed your optic nerve would run down the neck and back up again?

The pressure on that nerve is most likely part of the Hodgkin’s disease in my neck or the tumor in the upper lobe of my lung. Rarely seen in lymphoma cases, it gave us the indication the cancer is not responding to this latest clinical trial chemo. So, in hindsight, (get it, hindsight), the lazy eye was a flag to start asking more questions.

After some debate, we decided to start an aggressive steroid treatment of Methylprednisolone to shrink the cancer most immediately. I had my first 2-gram IV dose at Mayo’s infusion center last night, and already feel an improvement in my neck today. The itching seems to have lessened and my eye condition is also “looking up!”

I’ll return on Monday for another infusion, Tuesday’s CT scan and blood work and a third Methylprednisolone infusion on Wednesday. Dr. Witzig is also going to talk with the radiology team to see if I would be a candidate for a new needle-guided, extreme temp (freezing or heating) treatment to the solid tumor area in my chest.

We’ll know more next week, but wanted to continue to keep you posted.
As always, thanks for thinking of us today.

Soon-to-be-birthday-girl,
Sash

Friday, July 15, 2005 4:13 PM CDT

TGIT!
Thank God it’s Today!

As I wake up each morning more grateful than the day before, I feel very fortunate to continue to feel as good as I do. Though the all-over itching persists, it is temporarily helped with oatmeal baths. My evening temps have thankfully broken, but a constant “heat” around my mid-section is exacerbated with our 90-degree weather. My obsession with feeling my neck nodes for change continues, and I’m happy to report no new growth. Insomnia has improved with new medication, and it seems my side effects lessen when I’m well rested.

I went to the local BMT clinic on Tuesday for blood counts. I received two pints of red cells and a unit of platelets, an anticipated need with this chemo clinical trial. I’ll return to the local clinic next Monday for counts, then back to Mayo on July 26th for blood work, a CT scan and consult with the doc. With my 30th birthday just around the corner on the 28th, you can guess the best gift I could imagine this year.

We’re looking forward to a visit from our friend Dawn this weekend. She and I are traveling to Rockford to see the babies from Tuesday through next Friday.

Eager to see who has more hair – the triplets, or me?
Sash

Wednesday, July 6, 2005 9:20 PM CDT

Sun, sand, surf, sushi, steaks from Wyoming, sipping wine in Temecula, shopping on Melrose Drive, star sightings (Brian McKnight), and seeing friends and family made for a memorable Fourth of July weekend in California.

While we were there, I developed evening temperatures of 101 – 102, which we were able to control with Tylenol. I also had a mild cough and persistent itching. At my Mayo clinic appointment today, they performed another ultrasound-guided needle biopsy of a node in my neck for the clinical trial data. We also saw Dr. Witzig who said my lungs sounded good, so the cough and temps could be due to weaning me from the Prednisone when I started the study. He prescribed a 5-day antibiotic regimen (Z-pac) and hopes my symptoms will subside, as this is just day 8 of my pills. I will return in late July for a CT scan. We ask for your continued prayers that my symptoms fade and this clinical trial drug brings me to remission.

Looking forward to our Independence Day from cancer,
Sash & John

Thursday, June 23, 2005 10:44 PM CDT

We had a very positive meeting with Dr. Thomas Witzig at the Mayo Clinic in Rochester today and agreed to proceed with a clinical trial. This phase II clinical trial uses a different modality to act against cancer cells and kills them while not harming normal cells. The investigational oral chemo drug, R115777, has been successful in treating non-Hodgkin’s lymphoma and is now being used in Hodgkin’s.

Many of my recent labs and tests from the U of M can be used to expedite the start of the study. I will return to Mayo tomorrow for blood tests, an ultrasound-guided needle biopsy of a node in my neck and a CT scan to complete pre-trial qualifications. We will go back next Tuesday to review results in an office visit and get the drug that I’ll take two times per day for 21 days. Another biopsy on day 8 will verify the drug is working, with CT scans on day 28 and 56 to evaluate continued progress. Weekly blood work can be performed locally.

Dr. Witzig expects that I will tolerate the drug with relative ease and have few side effects. Though he makes no guarantees, we’ll hope and pray that this works, and we won’t know until we try! The goal is to get the cancer in control again and back on the road to transplant. We are very confident in his skills and were even more impressed that he hails from Peoria. He went to the University of Iowa (we’ll forgive him for that), where he worked with our local oncologist Dr. Linda Burns.

Mom, Allie and the triplets leave tomorrow. We’re looking forward to our trip to California next Wednesday. We’ll continue to keep you posted and as always, appreciate your thoughts and prayers.

Sash & John

Saturday, June 18, 2005 11:45 PM CDT

Putting on my rally cap!
(And I have plenty of hats to choose from these days).

Thanks to all of you for the overwhelming support this difficult week. Your prayers and positive energy yielded two things we really needed to hear: Hope and Options.

We had a good meeting with Dr. Fatih Uckun, Medical Director of the local Parker Hughes Cancer on Friday. They supported the University's recommendation not to proceed with transplant. Their personalized treatment approach combines with cutting edge basic research to offer those suffering from cancer the most successful and least toxic treatments tailored for each patient's best possible outcome and a hope for recovery. We were impressed with his energy and ideas and willingness to start chemo as soon as we are interested. I have spoken to several local survivors who were given the “pack your bags” speech and turned to Parker Hughes with success.

Our meeting with Dr. Burns at the BMT clinic was also encouraging, as she identified a clinical trail at the Mayo Clinic for which I may be eligible. She contacted her colleague and protocol chair, Thomas Witzig, who we will see next week. Patients receive oral chemo Tipifarnib twice daily on days 1-21. Courses repeat every 28 days and would be followed for six months. My platelet count, white blood cells and red blood cells were all normal yesterday, critical to entry criteria in the study.

We’re anxious to get to Mayo and make a decision about next course of treatment from there. All parties agree on my quality of life as the priority, but since my head and heart do not match what they say is happening in my body, I am not giving up. And hey, if Michael Jackson can get acquitted, anything can happen!

We appreciate the outpouring of guestbook messages, offers to visit, resources, survivor stories, calls (one even from the former Governor, and not the wrestler!), dietary, holistic and alternative medical advice. I’m taking everything into perspective and practicing a “maximum moderation” lifestyle at this time.

Mom, Allie and the babies arrived Friday and we enjoyed a visit with Nebraska relatives today. We’re off to sunny California for a long weekend on the 4th, as we continue to make the best of each day (which I think I’ve always done a pretty good job of!).

Thanks for thinking of us today.
Sash (& John)

Thursday, June 9, 2005 5:37 PM CDT

For those of you who we have not reached personally, we got some bad news at the clinic on Wednesday. The CT scan from this week showed considerable cancer growth compared to the one just three weeks ago, so the BMT team does not feel a transplant would be beneficial.

I could already feel the nodes in my neck coming back. The suspicious lung nodules we hoped were an infection are also part of the Hodgkin’s. Because stem cells of any type need months to engraft, a transplant at this time would just compromise my system and make me feel worse and more susceptible to infection. More chemo would also compromise my immune system and require daily clinic visits for transfusions – not the quality of life we want. Additional radiation is not an option either, as I received full doses in 2002.

The doc recommended a steroid, prednisone, to hopefully manage the Hodgkin’s for as long as possible. I’ll continue my regimen of antibiotic, antifungal, and antiviral medications. Dr. Burns has searched for clinical trials and consulted other docs and leading cancer centers and is willing to work with us however she can, but she feels like we’re loosing ground. Shocked and in disbelief, we were told that I probably have “months, not years.” I plan to defy those odds, as we continue to hope for a cure and pray for a miracle. We will continue to search for alternative therapies and treatment centers.

We are in Rockford tonight and will be in Illinois this weekend with family. Mom, Allie and the triplets will probably be coming to staying with us for a while. We plan on making the best of the time we have and ask for your prayers for our us and our families.

With broken hearts, but not broken spirits,
Sash & John

Wednesday, June 1, 2005 10:24 PM CDT

Some people ask, “What can we do?”
and there are others who “Just do it!”

We’d like to thank our amazing friends (and World’s Best Care Package Senders), Dawn & Amy, for running and raising funds in the Nashville Music City ½ Marathon as part of Leukemia Lymphoma Team in Training last month. They raised over $5,000 as “Team Sasha.” I am humbled by their dedication as former non-runners to take on such a challenge - as each step brings us closer to a cure. (Many of you know my philosophy…I only run when chased!).

We met with the oncologist today and I got a “weekend pass” to go see the triplets tomorrow. After three weeks of daily appointments, I’ll look forward to a break from the clinic. My transplant work-up week starts on Monday with various scans, heart and lung tests, consent signings and meetings. We’ll see Dr. Burns again on Wednesday to review results and plan on admission to the hospital on June 13th for chemo and radiation before transplant.

To those of you who know just what we need, at times when we’re not even sure – thank you.

Sash & John

Wednesday, June 1, 2005 10:24 PM CDT

Some people ask, “What can we do?”
and there are others who “Just do it!”

We’d like to thank our amazing friends (and World’s Best Care Package Senders), Dawn & Amy, for running and raising funds in the Nashville Music City ½ Marathon as part of Leukemia Lymphoma Team in Training last month. They raised over $5,000 as “Team Sasha.” I am humbled by their dedication as former non-runners to take on such a challenge - as each step brings us closer to a cure. (Many of you know my philosophy…I only run when chased!). Check out their photos!

We met with the oncologist today and I got a “weekend pass” to go see the triplets tomorrow. After three weeks of daily appointments, I’ll look forward to a break from the clinic. My transplant work-up week starts on Monday with various scans, heart and lung tests, consent signings and meetings. We’ll see Dr. Burns again on Wednesday to review results and plan on admission to the hospital on June 13th for chemo and radiation before transplant.

To those of you who know just what we need, at times when we’re not even sure – thank you.

Sash & John

Thursday, May 26, 2005 6:50 PM CDT

What a fan club we have! My white blood cell count has doubled twice in the past three days!! Platelet transfusions on Tuesday and yesterday, plus two pints of red cells ordered for tomorrow will help my counts continue to climb closer to normal.

At yesterday’s appointment, Dr. Burns updated us that my donor has designated June 20th as their preferred collection date. As long as I’m infection-free, my transplant would be the next day. In that case, I would not have another round of this latest chemo, but focus on fighting infection and getting healthy for the transplant. I had always wondered at what point we would decide “enough is enough” with chemotherapy, and with this latest bout of infections, slow cell count recovery and never-before seen side effects, I think my body is calling for backup.

The best chance at a cure, the unrelated donor transplant has been described as a “night and day” contrast to my autologous transplant last summer. We’re going for higher risk, higher reward. Dr. Burns reminded us once again that mortality rate due to infection or complication is about 20 percent for up to five years post transplant. I like to think of it as an 80 percent survival rate! The other option of limping along on “maintenance chemo,” especially with my marrow becoming more compromised and slower to recover after each latest round, is not one we are considering at this time. Plus, they haven’t ever encountered a “Sasha” in those statistics. :)

Still no word on the bronchoscopy results, as it may take up to two weeks for cultures to grow. When the pulmonary doc met me yesterday, he was surprised that I was the patient matching my extensive medical history, as he admitted to expecting someone who looked a lot worse. I'll take that as a compliment!

I’ll have another chest CT on June 10th at which we’ll hope for major improvement in the lung nodules.

John is off to the Indy 500 this weekend with college buddies and Mom is headed north to keep me company, as I continue my self-induced quarantine.

Have a great Memorial Day!
Sash

Monday, May 23, 2005 12:34 AM CDT

A fungus among us?

Friday’s chest CT showed new nodules in the lower part of my lungs, which could indicate a fungal infection, so I began taking strong anti-fungal meds immediately. Though fungal infections are not easy to treat with a compromised immune system, we would rather hear this vs. new Hodgkin’s disease. My new chest and back pains, fevers and night sweats could also be attributed to infection as well.

The doc called this morning with results from the PET scan. Areas of improvement include the underarm, mediasteinem (center of chest) and lungs. The neck nodes had also gone down, indicating forward progress! At this point, the next round of chemo will not be next week (and the following is doubtful). Our specific prayer these days is for my white count to recover and help fight off these persistent bugs and move toward transplant.

I’ll have a bronchoscopy lung biopsy procedure on Wednesday. Performed under mild sedation, the doctor sprays a local anesthetic into the nose and mouth and inserts a thin bronchoscope in the mouth and advances it to near the vocal cords down to the lungs. A saline solution will be washed into some of the airways and these washings are then collected and sent to the lab for biopsy. We’ll keep you posted with results.

With another one for the “You’vegottabekiddinme” file,

Sash

Thursday, May 19, 2005 8:34 PM CDT

George: "Do women know about shrinkage?"
Elaine: "What do you mean, like laundry?"
George: "No..."
- Seinfeld’s George and Elaine in "The Hamptons"

At yesterday’s clinic appointment, Dr. Burns felt that the nodes hadn’t changed/grown, so that’s good news. In this case, shrinkage is a good thing!

My blood counts remain at a compromised low. White blood cells are 0.2 (normal range 4.0 – 11.0), so I got a Neupogen growth factor shot today for another boost. After regular transfusions this week, hemoglobin is 9.8 (normally 11.7 – 15.7) and platelets are 35 (normal range 150 – 450). Needless to say, we’re being extra careful these days by wearing my mask, hand washing, staying away from crowds, sick people and kids. The only way I'll be going to the Mall of America or Ikea would be in a bubble (another favorite Seinfeld episode!).

Counts need to recover before my next chemo, as risk of infection with an already compromised immune system can be very dangerous. We’re hoping for a rebound by next week!

My alkaline phosphate liver level has been rising this past week, which can be attributed to many things: chemo, my medications, liver function or the antiviral IV infusion. We decided to take a week off of the twice-daily CSV infusion and check levels again in a few days. They have ordered a CT/PET scan to look at my lungs, as I’ve been having some back pain. This will also be a good gauge of the success of the last chemo. I’ve also developed some painful mouth sores that they cultured yesterday. We’re continually impressed with the team’s extreme caution and proactivity with each new or unexplained symptom.

After a few days of intense shedding last week, we shaved our heads on Friday night. Thanks to John for his “sympathy shave!.”

Check out the new triplet pictures!
Sash

Wednesday, May 11, 2005 12:56 AM CDT

At this morning's appointment, Dr. Burns was visibly relieved and rejoicing a good response to this last round of chemo. She felt that the neck and underarm lymph nodes were noticeably improved. As long as my counts recover as planned, I will have a second round of the 6-day inpatient mini-BEAM chemo on the 25th. Scans and work-up will follow. The best-case scenario for transplant timing would be in 6 weeks, or early July.

I have clinic appointments for the next seven days, as I have been transfusion-dependant every day this week. We’ll continue the twice-daily home IV infusions to fight the CSV virus through next Wednesday and may get to switch to oral meds for six weeks after that.

They have found an adult stem cell donor who is a perfect match and willing to donate, so we will not be using cord blood after all. The adult cells have a “memory” or experience fighting disease, and can be called upon at a later date for donation again, if needed. Cord blood is a one-shot donation and the two cords they were holding were just 5 out of 6 matches. As the top cancer centers still have differing opinions on the benefits of adult vs. cord blood stem cells, we have faith that this is the right decision. Plus, one year post-transplant, I will have the opportunity to connect with my donor (cord blood is always anonymous).

Today Dr. Burns said “you have no idea how many people are pulling and praying for you.” I think I do. (Thanks.)

Holding on to hope and hair,
Sash

Wednesday, May 4, 2005 1:53 PM CDT

Even though I had a nice view of the Mississippi River from my room, I was happy to come home from the hospital Monday. I said goodbye to my 80-year old roomie, hospital food, continuous IV tether and nighttime nurse interruptions. Thanks for all your calls, visits and cards.

The clinic just called to say one of my blood cultures tested positive for a marker of CMV (Cytomegalovirus), which I will begin fighting tomorrow with an in-home IV infusion of a drug called Ganciclovir. I'll receive it twice daily for two weeks, followed by M-F infusions for six weeks. It may impact my blood counts, but shouldn't delay the next chemo or transplant.

CMV infection is usually harmless and rarely causes illness. A healthy immune system can hold the virus in check. However, if a person's immune system is seriously weakened in any way, the virus can become active and cause CMV disease.

I return to the clinic on Sunday in case I need platelets and we’ll see the doctor next Wednesday for revised chemo/transplant schedule.

In need of an "easy" button,

Sash

Wednesday, April 27, 2005 5:40 PM CDT

BEAM ME UP.

After a self-perscribed roadtrip to Rockford for some "triplet time," I was admitted to the hospital today for six days of chemo. The cocktail, "mini BEAM", contains some drugs I have had and a new one (BCNU, etoposide, ARAC and melphalen). The radiology report confirmed the cancerous node under my right arm, minimal growth in my right neck and chest areas and slight new activity in my abdomen.

Had a great time with the family in Rockford. The babies are growing, smiling and responding wonderfully. What a blessing to have those three little bright spots in our lives, representing new life and hope. We promise new pictures soon!

I felt like I was at a "Sister Spa", as Allie colored and highlighted my hair, gave nightly massages and we went out for lunch and shopping. (Just what the doctor ordered.)

Mom drove back with me and will stay through the week to keep me company while I'm in the hospital. John will spend evenings and the weekend with me. Visitors and calls are welcome!

We'll continue to keep you posted.
Sash

Thursday, April 21, 2005 12:08 AM CDT

“Ode to a Node”, or “The Pits”

Most new things I accept with glee,
but a new node under arm was a shock to me.
Doc said “Don’t panic yet,
we’ll order a PET
and hope there’s something else it could be.”

At yesterday’s clinic appointment, my counts had rebounded sufficiently to continue with the three-week delayed chemo. However, upon further examination, Dr. Burns found a new lymph node of concern under my right arm. I’ll have a PET scan at 8:30 tomorrow morning which should help the decision for the next step: either more chemo if we think the benefit outweighs more delay, or the transplant to give those new miracle cord blood cells a chance to fight the cancer before it advances any more.

My itchiness, edginess and sleeplessness have returned, and we are anxious to move ahead. These are not easy decisions and we ask for your prayers and support as we face another scary time.

In search of poetic justice,
Sash

Saturday, April 9, 2005 11:36 AM CDT

Do not pass go. Do not collect $200.

At yesterday’s clinic appointment, my blood counts were still too low from the first chemo to proceed with the second treatment. It is common that the marrow “takes a hit” and stays compromised longer, the more chemo you endure. We’ll hope it’s knocking out the cancer equally hard! I needed red cells and platelets (a little top off before the weekend) and was at the clinic for nearly seven hours.

You know it got bad when I ordered something from QVC. Next time, John won’t leave me unsupervised. :)

I received a Neulasta white blood cell booster shot and will return to the clinic next week to monitor counts. My doctor estimates the next chemo in ten days or so. We were disappointed at the delay, but understand that it is expected. This is a marathon, not a sprint.

Have a great weekend!
Sash

Wednesday, March 30, 2005 12:35 AM CST

Upon feeling a fullness in my right neck and slight enlargement of a lymph node, we decided with Dr. Burns today to switch cocktails. Back to an “old faithful” chemo of Gemzar, Doxil and Navalbine that proved successful prior to my last transplant. I will receive the first outpatient dose on Friday as Day 1, then repeat on Day 8. The second cycle begins on Day 21. I’ll have scans after that. We’re hoping the third time is a charm!

I’m managing the shingles pain with an anti-seizure medication, which has eliminated the “electric shock-like” pains in the nerve on my head. My other medications include an antiviral drug for the shingles, an antibiotic, a pneumonia prevention pill, and potassium. I’m happy to be done with the Prednisone steroid and its side effects.

With a med list like a pro baseball player,
Sash

P.S. I’ve realized I refer to the upcoming umbilical cord transplant with little details, so here’s more of an explanation:

“The world’s first successful human blood and marrow transplant (BMT) was performed at the University of Minnesota in 1968. Since that time, physicians affiliated with the University of Minnesota have performed more than 3,700 blood and marrow transplants.

Umbilical cord blood transplantation is a much newer therapy than bone marrow transplants. First performed in Paris in 1988, it is still considered experimental in some settings. These days, however, the use of umbilical cord blood is becoming "routine." It comes as a single plastic bag of beautiful red blood.

The blood contains remarkable "seeds'' for making new healthy blood. These "seeds," known as hematopoietic stem and progenitor cells, are found in the blood of every newborn baby's umbilical cord and placenta. Traditionally, these birth by-products have been discarded, or sold to cosmetic companies for chemicals used in skin-softening creams.

Once in the bloodstream, the stem cells migrate to the bone marrow. This is where they must lodge, then "engraft," and grow to replenish the bone marrow and blood. They are replacing diseased marrow and blood destroyed by extremely high doses of chemotherapy and radiation.

The migration and engraftment process takes about two to four weeks. After they have been accepted by the body - or "engrafted," in the language of transplant experts - their real work begins. Over the next 100 days, the stem cells will literally rebuild the blood, bit by bit - and continue to do so for a lifetime.

And this is the true marvel of umbilical cord blood: Stem cells can turn into lots of different kinds of blood cells.

For example, they can turn into erythrocytes (red cells) for carrying oxygen to body tissues and leukocytes (white blood cells) for fighting infection. While the stem cells are the same as those from bone marrow, it is the accompanying immune system that is vastly different. The umbilical cord blood immune system is immature, or "naive," where the adult immune system is mature.

Bone marrow stem cells can turn into different kinds of blood cells, too. But there are two main drawbacks to bone marrow, which is why doctors, patients and families are increasingly turning to umbilical cord blood instead of bone marrow.

The first is that cord blood is more easily and readily obtained.

The second is that cord blood appears to be more readily accepted by the body, thus reducing the chance of a lethal rejection by graft vs. host disease.

As of September 2000, more than 2,000 cord blood transplants have been performed around the world. The longest surviving patient is 16 years old and has lived 12 years post-transplant. In general, the procedure carries success rates at least as good as bone marrow overall and in some situations better than marrow.

As research continues, it is hoped that these outcomes can improve dramatically.”

Source: University of Minnesota Cancer Center, www.cancer.umn.edu

I think that John, “Husband of the Year (5 years running), deserves an honorary medical degree after all of this, as our vocabularies and medical experience have greatly expanded in the past three years!

Thursday, March 17, 2005 6:13 PM CST

Raise the roof!
Shingles improving.

At today’s clinic appointment, they checked my outbreak and confirmed progress with the shingles. I have a few new spots on my right neck and chin, but the blisters seem contained in the nerve in my scalp. I am contagious only to fellow immune-suppressed patients, so was quarantined at my appointment today. I was pleased to report a pain scale number of “2” versus 8-9 last week.

My blood counts were dropping from the just-finished chemo regimen, so I received a Neulasta white blood cell booster shot, as well as an infusion of potassium and magnesium. I’ll return to the clinic on Monday for counts and see Dr. Burns on Wednesday. I hope to receive the “all clear” to go to Rockford for Easter. We’re preparing for a winter storm and plan a quiet weekend inside, as my energy level is still quite compromised.

Queen of the couch, princess of pajama bottoms,
Sasha

Monday, March 14, 2005 3:20 PM CST

Supergirl may have found her kryptonite. Shingles. (Yuck.)

After a less-than-super week of staying in bed with splintering headaches and the emergence of painful mouth sores this weekend, it was confirmed that I have shingles. So, those nasty side effects were not from the oral chemo regimen at all, but a result of this painful, blistering rash caused by a virus similar to chicken pox (common in immune suppressed patients).

My outbreak is concentrated along the nerve on the right side of my head and it sounds like I’m through the worst part. Oral anti-viral drugs and pain management meds should help this week. Since the bumps are contained within my hairline, hopefully scars will not be a problem. I will continue the normal level of chemo drugs and return the clinic on Thursday. I’ll have at least one more cycle of chemo TBD before the umbilical cord blood transplant.

We are relieved to have an explanation for my pain (it wasn’t the weekend visit from the in-laws!) and ever-more-grateful that I have not had these kind of side effects until now.

Thanks for thinking of us today.
Sash

Thursday, March 10, 2005 8:22 PM CST

Clinic appointment went well today. My counts are stable and my alkaline phosphate liver level was closer to normal. I received the Valban IV at the clinic and will continue pills for another week. After four days of killer headaches, Dr. Burns gave me the option of taking less of one of the prescription chemo drugs potentially causing that side effect. I’m taking Percocet for the pain, and have a new respect for migrane sufferers!

John’s folks are coming for the weekend, so we hope to have some fun!
Thanks for thinking of us today,
Sasha

Thursday, March 3, 2005 12:51 AM CST

Sometimes you're the windshield.
Sometimes you're the bug.

My PET scan on Monday revealed that the lymph node chain in my right neck had slightly decreased in size since 1/10, but the four focal regions in my chest were virtually unchanged. I also had elevated alkaline phosphate in my liver, which caused a bit of concern which they will continue to monitor. My oncologist decided to try a different chemo in hopes of a better response before the transplant. This cocktail nicknamed “CHLVIPP” includes CHLorambucil orally for 14 days, VInblastine (Velban) by IV today and next Thursday, Prednisone orally for 14 days and Procarbazine orally for 2 weeks. I’ll probably get a Neulasta shot next week to help maintain my white count. After 3-4 weeks, we’ll repeat the cycle and rescan.

I spent the weekend in Rockford meeting my new niece and nephews. For the first time, I looked at my little sister and saw a Superwoman. Looks like strength runs in the family.

Hanging in,
Sash & John

Wednesday, February 16, 2005 10:22 PM CST

24 daily diaper changes
8 daily feedings
Countless loads of little laundry
And 1 proud auntie!

The triplets came home the fourth weekend of January and are doing great! Sassy little Avery reminds Allie of her aunt Sasha, especially as her cheeks start to fill in! Ian has doubled his birth weight, now weighing in at 6 pounds to equal Evan. At six weeks old, they will soon be off the apnea heart rate monitors. We’re looking forward to our first visit next weekend. Mom (Nana) has been helping out while Chris and Allie finish their basement and prepare the nursery.

Check out their pictures at this shutterfly website: http://share.shutterfly.com/osi.jsp?i=EeAN2rNs5btm7EaA
Copy and paste the link into your browser. Click “view pictures”, then “view slideshow.”

Health update: We met with Dr. Burns today and she continues to be very encouraged by my response to this chemo regiment. We’ll wait two more weeks for optimum effect, then have a CT scan to check progress. She predicts having one more round of chemo after that, then a month until transplant. My platelet count was 152 on Sunday and down to 48 today, so I’ll probably require a transfusion by Friday. Counts should bottom out early next week and then start to climb again.

My employment with ACS was terminated last week, so we’ll be busy with switching my insurance to John’s policy by March 1. We understand that this is customary after six months of short-term disability and no return date on the immediate horizon. Thankfully, my long-term disability will continue. My e-mail address will be changing, so we’ll keep you posted.

Thanks for thinking of us today,
Aunt Sasha

Wednesday, February 9, 2005 5:58 PM CST

Free you mind and your hair will follow.

As my hair comes in thick, wavy and full of cowlicks, a trip to the salon was a must last week. In a rock-star moment, I decided to get a little creative and got hot pink highlights (after a quick warning call to John, of course)! My new look has received quite the reception. My only concern was that I’d like it so much that it could become my new signature ‘do!

I was admitted to the hospital yesterday for chemo #2 of this pre-transplant cocktail. After 8 hours of IV hydration infused with a bladder protector, I started the 24-hour dose of cisplatin. This evening I’ll start the cytarabine (ara-C), followed by the steroid dexamethasone. I hope to be discharged tomorrow and will return to the clinic Friday for my final dose of dex and white blood cell booster shot, Neulasta. I’m still feeling great, lounging in bed, reading, watching HGTV and talking on the phone. Not too much different than my days at home!

Fueling our new rock 'n' roll lifestyle, we bought a different car this weekend. Ever since our trip to Hawaii with our topless rental car, I’ve had convertibles on the brain. So, no more VW Beetle – we now have an '03 silver Mustang convertible. John jokes that the darn Hawaiian trip is still costing him money! We’re looking forward to warmer weather when we can put the top town. With eminent hair loss, I won’t have to worry about tangles!

Feelin’ like a rock star,
Sash

Tuesday, February 1, 2005 5:47 PM CST

If the groundhog sees his shadow tomorrow, does that mean six more weeks of chemo? We’ll see!

I’m still battling a cold and last Saturday morning was the worst day yet. I had a clinic appointment scheduled for that day where they checked my counts. They are stable without need for more transfusions, which is a good thing. Platelets are in the 40s and white cell count is over 3.

I’ve been taking antibiotics and an anti-pneumonia pill, and my cultures for RSV/influenza were negative. However, I had a temp of 102.7, cough and congestion, so I was given another prescription and ordered to rest and call the clinic with any changes.

My temp broke late on Sunday, and I’ll return to the clinic on Wednesday. I’m feeling a little better each day. I must recover so I can go meet my new niece and nephews in Rockford!

At this time, Dr. Burns does not feel I’ll be ready for chemo this weekend, so it will be the following week. Scans after that will determine need for further chemo treatments to put me as close to remission as possible before the transplant.

Happy February!
Sash

Wednesday, January 26, 2005 3:39 PM CST

Don’t wrestle, just nestle.

Many of you remember my middle name before I got married (and took my maiden name) was Corrie. I was named after Corrie Ten Boom, an amazingly brave Dutch Holocaust survivor and best-selling author of The Hiding Place. I’m comforted by a quote of hers, reminding me that my job now is simply to cuddle into God’s loving hands: “Don’t wrestle, just nestle.”

At today’s clinic appointment, they tested for influenza/RSV since I’ve had a head cold for a week. My lungs sounded good, so we’ll hope it’s nothing major that would delay my next chemo. As expected, my counts were low: platelets 8 (norm. range 150-450), white blood cells 2.6 (norm. range 4 – 11), and red blood cells 2.73 (norm. range 3.8 – 5.2). I received a platelet tranfusion today and will need red cells tomorrow, along with more blood work.

John felt like he was getting sick and went to the doctor yesterday. They said it was just a virus that would run its course and that he was past the contagious stage. We’ll continue to be diligent with hand washing and avoid sick people until my counts recover.

Nestled in for the day,
Sash

Friday, January 21, 2005 7:07 PM CST

Had a nice, uneventful week at home. I had a good appointment on Tuesday, as Dr. Burns was encouraged with my response to chemo. My insurance has approved the second transplant (whew!) and I'll return to the clinic next week for blood counts and a better idea of next treatment schedule. I'm fighting a bit of a cold this week, so am taking it easy and enjoying staying inside in this winter weather.

Finally posted a picture. Still working on the one of me in the coconut bra on the Harley in Hawaii. :)

Thanks for thinking of us today.
Sash

Sunday, January 16, 2005 1:14 PM CST

Greetings!
I’m happy to report to be home early since I tolerated the chemo quite well. After pleading for discharge yesterday with a promise to return to the clinic this morning for my final steroid infusion, white cell count booster shot and blood work, I got to sleep in my own bed last night!

The itchiness has started to subside and the node in my neck (which looked like a displaced Adam’s apple last week) has already diminished significantly! What a relief.

I’m admistering eye drops every four hours through Tuesday to combat one of the potential side effects. No nausea thanks to those wonderful perscrptions, but hair loss is expected in the next couple weeks. Just when I was preparing for my first hair cut in almost a year!!

I’ll return to the clinic throughout the week to monitor my blood counts, as many times post-transplant, the new cells are more sensitive and susceptible to the chemo. As John mentioned in the last update, the next dose will be in 21-28 days. This is in preparation for the umbilical cord transplant that we hope to receive early spring.

I’d like to take this time to thank you all for checking this site for updates. Know that our first choice would be to call each of you with latest news. Between my lower energy level and nap schedule, and the fact that my mom has been here as the best nurse ever, we’re enjoying a quiet restful house. And this way, when we do connect by phone or e-mail, we can talk about other more exciting things – like my new niece and nephews!

Sash

Thursday, January 13, 2005 2:04 PM CST

We had the follow-up appointment with the doctor yesterday afternoon (1.12.05). Dr. Burns told us that the antibody trial Sasha was on did not give us the desired results we wanted, as we could already tell by the enlarged lymph node on her neck. The node in Sasha’s neck was larger in the scans earlier this week compared to the scans in early November. The cancer in her chest grew some, but not dramatically. The doctor suggested going back to chemo again, which we were prepared to hear. Sasha asked that we start this week, so we are starting today.

Sasha will be in the hospital starting today and coming home on Monday (1.17.05). She we be on a chemo cocktail called DAP. This cocktail consists of three drugs and will be administered over the next 3 days. Today they will be giving Sasha an IV to hydrate her before they start giving her the drugs. They do this to help minimize any side effects from the drugs.

She will have some blood work taken next week to make sure her counts are back to a normal range. More than likely Sasha will get a shot to boost her counts back closer to normal. The next treatment will be in 21 to 28 days.

Sasha's hospital room phone number is listed below.

Thanks for your thoughts and continued prayers in 2005.

Saturday, January 8, 2005 9:26 PM CST

Happy New Year!

The good news:
Hawaii was a wonderful warm escape. Magical waterfalls, breathtaking beaching, fabulous seafood, succulent fruits (and I’m just talking drink garnishes!) and much needed rest and relaxation were the highlights.

During our vacation, Allie and Chris welcomed the triplets: Avery Anne, Ian Russell and Evan William into our family. They just couldn’t wait ‘til we got home to come into the world! Everyone is healthy and happy. We are looking forward to meeting them.

The not-so-good news:
While on our trip, the lymph node in my neck grew significantly, so they’ve moved up my scans to Monday, with a consult with the oncologist on Wednesday. We fear the clinical trial is not the answer after all, so we’ll be discussing more options. As always, our New Year's resolutions continue to remain positive and know we’ll get through this.

Thanks for your thoughts and continued prayers in 2005. We still need them.

Sash & John

Saturday, December 18, 2004 11:10 AM CST

What to do between this latest treatment and my next scan?
Hang loose!

We’re taking the advice literally and leaving for Hawaii on Christmas, returning January 7th. Thanks to friends with a time-share connection, donations of time off from John’s coworkers and generous contributions from so many of you, the trip has come together in less than a week! We had hoped to escape to a tropical destination during this rare break from treatments, since we haven’t had a vacation since my initial diagnosis – and Santa came early!

We’ll spend the first half of the trip on Kauai, then to Maui for the second week. We have clearance from our doctor and will take my medical records along. My sixth treatment is this Tuesday. Mom is planning to come this week to celebrate Christmas before we leave.

We hope the rest and relaxation will be just what the doctor ordered!

Melikalikimaka!
Sash & John

Tuesday, December 7, 2004 6:37 PM CST

Completed my fourth infusion (out of six) today. All continues to go well. Same story on side effects: itchiness and fatigue persist. Since the experimental drug SGN-30 is a human antibody produced in mice, I’ve noticed a craving for cheese and a wariness of cats these days. (Just kidding). Isn’t medical technology amazing?!

We’re gearing up for the holidays. Our Christmas list is short this year – we just want one thing. Scans in January will determine success of this treatment and eligibility for six more doses. Hopefully Santa will be good to us. But I guess Santa isn’t the Man with the plan this time.

Sash & John

…not a creature was stirring, not even a mouse.”
- ‘Twas the Night Before Christmas

Monday, November 29, 2004 6:35 PM CST

It’s hard to believe that it was a year ago last week that our lives were turned upside down (again). We were days from departure for a long-awaited trip to Scotland. Routine blood work indicated elevated liver levels, prompting a CT scan, confirming our biggest fear. The cancer was back.

After a year of consultations and chemo, failed fertility procedures and fading hair, stem cell collections and scans, transplant and transfusions, and infection and infusions of a new antibody drug – we tried to look at the bright side.

Each day’s trip to the mailbox was a highlight. Your calls, prayers, creative care packages, donations, and support rendered us speechless (and you know that’s rare for ME). Times like this really reveal the important things…and people…in our lives. For that, we are truly grateful.

We had a wonderful visit with family and friends in Illinois and I’m gearing up for the third treatment tomorrow. All continues to go well, with few side effects.

Thanks for thinking of us today.

Sash & John

Thursday, November 18, 2004 11:53 AM CST

My first treatment on Tuesday went well. We had to wait about two hours for the investigational pharmacy to prepare the drug, but that should not happen again. So far, no side effects other than existing itching and fatigue.

My return to the clinic reunited me with some favorite nurses and staff who were glad to see me at first, then disappointed to realize why I was back. I was saddened to learn of the loss of some patients I had gotten to know this summer, but hopeful for those who are still winning their battles.

We're looking forward to spending Thanksgiving with our families next week and celebrating our blessings this year.

With thanks,
Sash & John

Our co-workers and friends have generously started fundraising efforts to help cover the cost of our trip, medical bills and additional expenses. Donations can be sent to our address below. We are so touched by the kindness of so many.

Wednesday, November 10, 2004 12:05 AM CST

Wear some cool boots.
Cool boots make you feel like you can handle anything.
(Or at least kick it really hard.)

I got this card from Museum friends when I was in treatment in 2002. It’s a good thing that John bought me a sassy new pair of cowgirl boots in Texas, cause I’m gonna need ‘em.

Went to the clinic yesterday for labs and EKG in preparation for the clinical trail. We will meet with Dr. Weisdorf (Head of the BMT unit) tomorrow to sign research consents, discuss Anderson’s recommendation and answer questions.

My SGN-30 infusions will start next Tuesday and will continue for six Tuesdays through December 21. The infusion will last two hours and likely side effects include: tiredness, fever, muscle pain, headache and itching. Doctors will do everything possible to lessen these symptoms. Restaging will occur in January to determine progress of the antibody therapy and eligibility for another 6-week regimen.

Keep on kickin’!
Sash

Sunday, November 7, 2004 3:39 PM CST

Met with Dr. Roy Jones of Anderson’s bone marrow transplant team on Friday afternoon. This was the most informative appointment during our stay. He was very blunt and recommended aggressive chemo and another transplant using donor cells (either adult or umbilical cord stem cells). A “mini” transplant had been recommended by another oncologist earlier in the week, but Doc Jones felt like since the cancer is already back in just two months, we need to “swing away” and go for high risk, high return therapy. While the risk is scary, we remind ourselves of the things on our side: that my cancer has remained in stage 2 and never spread below my diaphragm, my system seems to tolerate chemo quite well, I’m young, healthy, strong…and cute!

Jones spoke very highly of the transplant team at the University of Minnesota, and confirmed what good hands we’re in here. We will stay here for the next treatment, hopefully the clinical trial using antibodies (biotherapy vs. chemotherapy) and discuss his aggressive recommendation with our local oncology team this week.

Thanks for thinking of us today,
Sash & John

Tuesday, November 2, 2004 4:57 PM CST

As Americans head to the polls to decide our next president, we are in Houston trying to determine next best course of cancer treatment.

Our day at MD Anderson yesterday started with meetings with new patient registration and finance, the research nurse, nutritionist, nurse and a PA. We met with Dr. Fredrick Hagemeister in the afternoon to review my case. His recommendation was similar to our doctors back home, which was both reassuring and disappointing that they don’t hold a “miracle cure.” Options discussed were more chemo and a clinic trail (though the antibody study is currently on hold at Anderson), or another transplant using unrelated donor adult stem cells (not umbilical cord blood like in MN).

We are awaiting an appointment with the bone marrow transplant team to discuss local process, risks and outcomes. Since nearly 90 percent of Hodgkin’s patients achieve cure at this point in my treatment, numbers of similar cases are few, even here. We hope to get more clear answers from the transplant team before we meet with the oncologist on Friday for final written recommendation of treatment.

We’ve been very impressed with facilities, staff, and fellow patients we’re encountering. It has been overcast and rainy today, so we went to a butterfly garden and a Dead Sea Scrolls exhibit at the Museum of Natural Science. We’re meeting new friends and our local hosts for dinner tonight and will check back with the clinic in the morning for updated schedule. If nothing else, this trip has confirmed the competence and caliber of the University of Minnesota care.

Be sure to vote – we did last week!
Sash & John

Thursday, October 28, 2004 4:21 PM CDT

We’re leaving for MD Anderson in Houston on Sunday and will stay through the next Saturday. My appointment is at 8:30 on Monday morning when I’ll see the doctor and determine need for further tests. There will be days of waiting for their recommendation, so we hope to enjoy Houston hospitality, warm weather and local attractions.

The U of M clinic has done some preliminary research into the umbilical cord donor bank and found numerous compatible matches – two that are 5/6 match! We’ll take this information with us to Houston.

Travel planning and insurance details have consumed our week. We’re so touched by offers of help: use of a camper in case of a long-term stay, strangers loaning us their vehicle next week, a free night at a luxury hotel on Sunday, friends-of-friends who have offered tour guide services, frequent flier miles and financial support.

I’m still feeling good, but the edginess and itchiness have returned.

Hoping everything is bigger, and BETTER, in Texas!
Sasha

Our co-workers and friends have generously started fundraising efforts to help cover the cost of our trip, medical bills and additional expenses. Donations can be sent to our address below. We are so touched by the kindness of so many.

Thursday, October 21, 2004 2:53 PM CDT

In Sickness & In Health
This month we celebrated our fifth wedding anniversary and John’s 32nd birthday. In the beginning of our relationship, he helped me wash my hair and put on my clothes. Now he helps me wash my clothes and put on my hair!

We met with our local oncologist again yesterday for a more in-depth explanation of the clinical trial, maintenance chemo and the additional option of an umbilical cord blood transplant.

The clinical trial for which I qualify involves monoclonal antibody SGN-30, a new experimental medication that may be able to slow down of even stop the activity of cancer cells. I would receive weekly two-hour infusions of the antibody for six weeks. Additional infusions depend on response to the study. Risks and side effects are few.

Maintenance chemo is just that – low does of chemotherapy for an undetermined amount of time. The idea is to manage the cancer until a better treatment (or cure!) comes along. The oncologist explained that weekly low does of chemo do not have significant long-term side-effects.

We will discuss the cord blood transplant with the doctors at MD Anderson in Houston. We are still awaiting an appointment date, as all my records, scans and biopsy slides must be sent before we get on their calendar. Once they have what they need, we should be able to get in within a week. They have their own internal travel agency to help coordinate airfare and accommodations, as a first appointment may last up to seven days. Our employers have been wonderfully helpful with travel and flexibility with time off.

We’re headed to Illinois for Allie’s baby shower and time with family. We’ll continue to keep you posted.

Sasha

Wednesday, October 13, 2004 5:21 PM CDT

60 days post-transplant

Looks like the fight is not over.

Today’s scans showed growth in the disease in my left chest and recurrent cancer on the right side (new since last month’s scan). Not the news we wanted to hear.

We discussed options of participation in a clinical trial using antibodies that attack the Hodgkin’s cells. The U of M is one of ten leading cancer centers nationwide in this pilot study. My eligibility to participate would need to be confirmed. Could also undergo “maintenance chemo” with a drug called Valban (one from the ABVD chemo I had in 2002). I would receive chemo every two weeks or so indefinitely. The goal at this point is to manage the disease – and pray for a cure! Surgery or additional radiation are not viable options, and an unrelated donor transplant is too risky for results that are not guaranteed.

We’ve elected to go to MD Anderson in Houston for a second opinion. Our local oncologist is supportive of this decision, and will put plans in motion beginning tomorrow for our trip.

Trying to keep our chins up,
Sash & John

Thursday, September 23, 2004 2:01 PM CDT

What Cancer Cannot Do

Cancer is so limited...

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

We met with the radiologist yesterday to discuss potential for post-transplant radiation. It was determined that more radiation (in addition to the aggressive dose I received in 2002) would be overtreatment at this time. We elected to wait until my Oct. 13th appointment/scans and hope the remaining tumor continues to shrink on its own. Our oncologist still has faith in the residual effects of the transplant, and additional options will be also be discussed at that time.

Putting the "can" in cancer,
Sasha

Wednesday, September 15, 2004 7:01 PM CDT

When life gives you lemons, say…
“*#@!!# THOSE LEMONS!”
and throw those lemons back in life’s face!

That way, life will be afraid to mess with you anymore!

I can’t believe how many of you have sent me this clever and very appropriate card. We are very pleased to report good results from today’s doctor’s appointment. Dr. Burns felt like we’ve made good progress, as the three active tumor areas prior to transplant are down to one small one. The cancer in my right neck and mediastienum is completely undetectable on the scans. The residual area is in my left chest, and has significantly diminished since the last scan.

We’ll meet with the radiologist next Wednesday to determine if more radiation is appropriate. Since I received radiation in 2002, they need to weigh the benefits vs. the risk of additional site-specific treatment to that area. Dr. Burns has also seen cases where insignificant areas continue to diminish on their own, but we feel that since we’re already heading off the cancer, “throwing the lemons back at it” one more time might help.

Off to enjoy some lemonade,
Sash & John

Tuesday, September 7, 2004 11:16 AM CDT

Day 25

Last Wednesday, I had to return to the clinic for more IV antibiotics due to a positive blood culture indicating another infection. It was determined that the external line in my chest was the source, so it was removed on Thursday. A home care nurse came to our house on Saturday to show John how to administer IV antibiotics here, saving daily clinic appointments for the holiday weekend. John stayed busy painting the house with our neighbors and reminded me that my only job was just to focus on getting better. My scans are this Friday, and we’ll know results next Wednesday. I continue to feel good and enjoy getting out on a gradual basis.

Until next time,
Sash

Tuesday, August 31, 2004 11:16 AM CDT

Day 18

Enjoyed my first weekend without clinic appointments! My white count was down a bit yesterday, which was expected since I’m off the growth factor shots. They will begin to rebound on their own. Platelets and red cells are climbing slowly too. I’m still feeling good and glad that I don’t have to return to the clinic until Friday, so hopefully daily visits are done. Visitors and short outings are permitted on a limited basis, and will continue to depend on future blood counts.

In my debut shopping outing wearing my mask (and bald, of course), I attracted the attention of a little boy in line. I overheard him ask, “Mom, what happened to that lady?” No response from Mom. Again (louder), “Mom, what happened to that lady?” A “shhh.” Persistently, “MOM, WHAT HAPPENED TO THAT LADY?!?” I’m sure she wanted to crawl under a rock. I just smiled under my mask.

Later, I thought of a reply. I should have said, “I asked too many questions and all my hair fell out!” I’m sure there will be another chance to try it out.

Counting my blessings (and my eight eyelashes),
Sash

Tuesday, August 24, 2004 11:56 AM CDT

Day 11

My white cells are rebounding well. Platelets will be slowest to recover (14 with a normal range of 150-450) and I’ll probably need red cells this week too. I’m feeling good and keeping busy with daily clinic visits. It’s been great to have Mom here – we couldn’t afford such great in-home care – from a personal driver, cook, and foot massager to help with hard labor! She and John worked on landscaping projects this weekend and I directed from my queenly perch at the window.

On my post-transplant discharge guidelines to prevent infection, I am to wear a mask in public, wash hands frequently, and because of the potential for exposure to fungal spores and/or infections, avoid the following: chopping wood, yard and/or farm work, potting plants, swimming or being near construction sites?! John is concerned how we’ll make it through a Minnesota winter if I can’t chop wood, but I assure him we’ll get by. :)

I’m scheduled for CT and PET scans on September 10 with an appointment on the 15th to review progress.

In solitude like my friends on the island on Days of Our Lives,
Sash

Wednesday, August 18, 2004 8:34 PM CDT

Day 5 Post-Transplant

After days of nausea and acid reflux from the intense chemo, eating little and sleeping much, today was a better day. My daily clinic visits this week have been four-hour appointments, as I required IV fluids on Monday for low blood pressure and mild dehydration. On Tuesday, I received IV antibiotics for a low-grade temp. After a slight allergic reaction, Benadryl was administered to help with itchy rash side effects. More antibiotics, platelets and red cell transfusions today. My white blood cell counts are climbing slowly to .4 today (normal range 4.0 – 11.0). I’m on daily growth factor shots to boost WBC count, in addition to oral meds to help combat infections and manage nausea. I wear a mask in the car and at the clinic. Still no visitors or shopping at Target for me.

More updates to come.
As bald as an Olympic swimmer,
Sash

Saturday, August 14, 2004 3:07 PM CDT

After a pleasantly anticlamactic tranplant day yesterday, I'm resting comfortably at home today. Surrounded by a wonderfully competent care team, chaplain, my loving husband and the warm thoughts of all of you, I celebrated a new birthday for my stem cells yesterday. Mom arrives tonight and I'm looking foward to sleeping in my own bed.

Will return to the clinic starting tomorrow for blood work and remain diligent to prevent infection.

We'll continue to keep you posted.
Smellin' like cream corn,
Sash

"You can't be brave if you've only had wonderful things happen to you."
- Mary Tyler Moore

Thursday, August 12, 2004 5:45 PM CDT

As the world is watching the opening ceremony of the Olympics tomorrow, we’ll be planning our own victory celebration! After months of preparation, the transplant time is finally upon us.

The first infusion will occur around 9 in the morning, and due to the large volume of cells, a second infusion will take place in the afternoon around 2. My stem cells will be rapidly thawed and given in multiple bags by transfusion into the line in my chest. My blood pressure will be closely monitored and I will be on medication for potential side effects and relaxation. From the preservatives in the stem cells, I will have a distinct odor for 3-5 days post-transplant, similar to creamed corn!? As a central Illinois farm guy, John thinks it could be a lot worse!

If all goes well, I’ll be discharged on Saturday, to be closely monitored by daily clinic visits in the weeks ahead. Follow-up scans will be performed in a month and day 100 will be a significant milestone for evaluation of success.

We appreciate your continued prayers and positive energy and ask especially for your thoughts tomorrow. We will update the sight this weekend.

Goin’ for the gold.
Sash

Saturday, August 7, 2004 12:57 AM CDT

After a visit with the oncologist on Thursday, we got the green light to proceed with transplant! Scans performed earlier in the week showed the tumors decreased 1/3 to ½ since the priming chemo, proving continued chemo-sensitivity. I was admitted yesterday and received fluids throughout the night to ensure hydration before the start of the intense chemo. I’ll get three drugs today (Cytoxan, BCNU and VP-16), with decreasing doses through Tuesday. Wednesday and Thursday will be resting days here in the hospital prior to receiving my stem cells next Friday. I liken the process to an oil change – out with the bad and in with the good!

John is at my side during the days and nights. We’re keeping entertained with movies, reading material and phone calls. Visitors are allowed three at a time. Nurses are great – they seem to like my sassy attitude and fun pink hat.

We hope to go home next weekend. My mom will arrive shortly thereafter. As the doc said yesterday, we’re hoping for a very boring transplant week.

Thanks for thinking of us today.

Saturday, July 31, 2004 12:41 AM CDT

On Tuesday, I was admitted to the hospital to start the second stem cell harvest session. I had a line placed in my leg, with three five-hour apheresis collections Tuesday through Thursday. It was performed in-patient due to the position of the line, as my mobility was significantly restricted and I had to remain flat on my back. What a way to spend a birthday!?! Hey, I figure that I gave myself the best gift of all – my own stem cells (the gift that keeps on giving!). I received transfusions of red blood cells and platelets most days this week, and am returning to the clinic Monday to learn the schedule for re-staging scans next week.

In my 29th year, I find myself grateful for many things: my chemo-clear complexion, that I inherited my Dad’s wonderful sense of humor and my Mom’s incredible strength, that my husband has such big shoulders (he’s carrying a lot on them these days!), and the visits, cards, calls, treats and support from all of you this special week.

Thank you.

Thursday, July 22, 2004 1:20 PM CDT

My white blood cell count is at an expected low 200 (normal range 4,000 – 11,000), so I’m taking growth factor shots each morning in addition to daily clinic visits. Precautions include frequent hand washing, wearing a mask when I go to the hospital, avoiding crowds and sick people, and delaying visits to the MOA and newly opened Ikea. Platelet count is still good with no need for transfusions at this time.

Experienced some light-headedness yesterday, which was the result of low blood pressure and emphasized the need to stay hydrated. Note to self: vodka does NOT count as a clear liquid…which could also explain the dizziness ;).

When my WBC count reaches 7,000, I will return for the second stem cell collection. This harvest will be in-patient through a catheter in a femoral vein in my leg, as my chest and neck veins are not cooperating. Go figure – the one part of me that is petite are my veins!!

Looking forward to an early birthday celebration this weekend with a trip to a b&b in Stillwater and Lumberjack Days!

Make it a great day. I intend to!

Wednesday, July 14, 2004 5:42 PM CDT

After a restful weekend, I finally had a more permanent tunneled catheter placed in my chest on Monday (the third time is a charm!). Admitted for priming chemo that evening. Another new cocktail consisting of Cytoxan, Mesa (to protect my bladder from nasty side effects), Mitoxantrone (a lovely blue drug) and steroids including prednisone and decadron. Aside from interruptions every two hours for labs, vitals and eye drops (to prevent another side effect), and masked and gowned nurses with meds they don’t want to touch, but give to me!?! – I’m feeling like a champ. Daily clinic visits this week will monitor my blood counts. Second stem cell collection will be in 10 days or so. Taking antibiotics and shots to boost white cell count. My hair is coming back thick and dark – very “GI Jane.” Suppose it’s an appropriate look for this battle ah