Heather's Health Status
Ah, the joy of technology. Now we have a way to keep all interested parties informed on the health status of Style Sources Co-President (and my wife) Heather. For the latest info scroll down to the bottom....
Heather has Acute Promylecytic Leukemia (APL). It is a blood cancer that causes the immature white cells to become malformed and to not develop. Heather was diagnosed in August of 2001 and, through the heroics of Lehigh Valley Hospitals ICU was saved and acheived full remission. That remission lasted three years, at which point she re-lapsed. Remission was again acheived with the use of ATRA. A bone marrow transplant was to be performed but she again relapsed. Through the use of Arsenic Trioxide over a 65 day course we again gained remission in the beginning of October.
Heather will remain on the Arsenic Trioxide until her scheduled admittance for the transplant on November 9th. She is feeling great and has a very positive attitude. Her donor will be her first cousin, Lynn Gleason, from Phoenix Arizona. Lynns unselfishness is only outweighed by her love for Heather, and she will be flying here in early November for the harvesting of her stem cells on November 15th.
The procedure for Heather involves several days of chemotherapy, to reduce her bodies immune system and to weaken her bone marrow. We are useing a newer technology called a "mini-transplant" which does not require complete erradication of her marrow. On the day before the transplant Heather will receive a total body immersion of radiation treatment. The following day Lynns T-cells will be harvested and then transfused to Heather. Additional chemotherapy after the transfusion will minimize graft vs host disease http://www.healthatoz.com/healthatoz/Atoz/ency/graft-vs-host_disease.jsp , and after a week or so Lynns cells will take over and re-populate Heathers bones with healthy marrow. If all goes well, the hospital stay will be 3-4 weeks.
A good article on the disease and bone marrow transplantation can be found at http://cpmcnet.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html
I will update this blog on a weekly basis until Heather goes into the hospital and then as often as I can to keep all of you in the loop.
For those of you who want to send something during her hospital stay, Heather is very involved with Team in Training which sponsors races to raise funds for the Leukemia and Lymphoma society. She plans on doing the 26.2K in Dublin next October, and requests checks be made out to the Leukemia and Lymphoma Society and sent to her. She has to raise $5,000 to participate.
Mail to 977 Hollow Court, Allentown PA 18104. All donations are tax deductable. Flowers or fresh fruit should NOT be sent as she may not be around plants during the first few months after the transplant.
Cards/letters may be mailed to Heather Krasnov Rm 1559, c/o Hahnemann Hospital, Broad and Vine St., Philadelphia PA 19102.
10/21/05- Heather is feeling great and her counts are normalized. Lots of pre-admission testing, and all looks good. She will be on the arsenic until 10/28 and then will be given a break until admittance 11/9. Her spirits are, as always, very upbeat. She was complaining yesterday that she could have done the San Francisco Nike marathon this weekend afterall. Jeez...
11/08/05- Tomorrow is admission day. We are picking Lynn up in Philadelphia tonight. We will be admitting tomorrow morning and Lynn will donate some of her blood to be used for herself after she donates next Wednesday. Heather will receive her first dose of mega-chemo. Her spirits are great and atitude is very positive. I'm a wreck.
11/09- The surgery to put in the Hickman port went smoothly. Heather received her first dose of cheno- a combination of two different drugs, and has been started on prophylactic antibiotics to ward off potential infection. Her spirits are excellent.
11/10- Really not much to report other than she is feeling better than she has the right to considering all the drugs they are giving her. Honestly, she feels great! Today is day three of chemo. I will be picking up dinner from Heathers favorite restaurant (courtesy of one of our dear friends/customer (thank you Christine!) and she will eat quiite well tonight. She brought enough food from home to survive for a month, so no hospital food for her! I figure the impact of the treatments has to hit her at some point here, but I'm thankfull for every day she feels well. Keep the prayers comming...
11/11-11/13- Heathers tolerance to the chemo is quite amazing. Basically zero side effects. She had lots of company, ate well and has boredom as her biggest issue, with one exception. The site where the hickman was implanted (a Hickman is an interveinous port surgically implanted to provide multiple access for fluids) began to swell and it was determined the device is faulty. This is a very rare occurance, and it means she has to go into surgery today to replace it, after she receives the full body radiation this morning. Otherwise, we are on schedule for tomorrows transplant. I'll be at the hospital the entire day so the next update will be Wednesday.
11/14-11/15- Everything continues to go incredibly smoothly. Heather has had zero side effects from the radiation. The Hickman was replaced with no issues. Lynn was harvested and is a bit sore and the transplant was uneventfull, aside from the gallery of nurses, doctors, etc fascinated by this somewhat rare procedure (Hahneman has only done a dozen or so of this type). We now enter the neutropenic stage. In a few days there will be more chemo for immunosupression. This supposedly reduces the chance of graft vs host disease. In about two weeks her counts should start to come up. After 60 days they will take a bone marrow biopsey which will indicate the degree of success. Keep the prayers comming, they're working!
11-16- Sleep deprivation from nurses monitoring this and that and fluid intake creating the call of nature every few hours left Heather a bit out of sorts for the day, but no health issues of consequence. I spoke to her this morning and she got alot more sleep and is feeling refreshed. This will continue to be a wait and see scenario, and let's hope it all continues to be uneventfull.
11-17- A touch of nausea corrected with two tiny brown pills was the major days event. Her counts continue to drop (as expected) but she is still doing office work I bring in (at her insistance) and eating well (no nasty hospital food, only catered fare from home). Tonight I'll pick up her favorite fish fry.
11-18-11/20- Heather received the two days of post transplant chemo (Fri and Sat). These doses were much larger, and she did have a day of nasua and exorsist type heaves. Sunday was not bad at all, with just a touch of residual nausea. They started her on anti-rejection drugs and also on a drug targeted to increase her white count. Miraculously, Heather is proceeding through this like it's a walk in the park. She is taking calls on her cell phone at 484-951-5121.
11-21- A decent nights sleep Sunday night and uneventfull Monday. The neuprogen shots (to raise white counts) are taking effect and her counts will see saw for a week or so as they play the balancing act of encouraging the stem cells to take without causing Leukocytosis (abnormally high white cell count). Immunosuppressants along with anti-rejection and prophylactic antibiotics are the regimen. Another good day with boredom the major issue. I can tell she is feeling fine when I call in the morning and she complains about all the rude loud people and nurses waking her at all hours and leaving the lights on. Better than hearing she is feeling ill, believe me!
11-22- All is well. The main issue is that Heather feels too good to be held prisoner. Another week of this and the hospital staff may pay me to take her home. Everything is on track and uneventfull. Donations for the marathon have reached over $2500 to date. Keep those checks comming made out to the Leukemia and Lymphoma Society. The stimulus for Heather to get right back to the treadmill is a terrific gift!
11-23-11-24- Heathers counts have about bottomed out, as expected, so she is most vulnerable to infection for the next 4-5 days. Hopefully her counts will begin to come up quickly. She feels great aside from a headache yesterday. Some good friends (thanks Mona and Debbie!) gave me T-Day food to take along yesterday and we had a semblance of a T-Day feast in her room. No doubt we have alot to be thankfull for.
11-25-11-27 - Counts remained very low and Heather received a platelet and two whole blood transfusions to maintain control on potential bleeding issues as well as energy levels. Small side effects from the anti-rejection drugs have been limited to some headaches and stomach upset. Heather promised to substitute white cells for sheep as she went to sleep to encourage their growth. No complications and we remain vigilant for signs of re-growth. The first indicators this is occuring are the increase in promylecites (immature white cells in growth stages), and they did come up over the weekend. Bonus update as of 9AM 11/28...we just found out Heathers white count improved from .1 to .4 over the past 24 hours. This is a very good sign, and if it continues she could be released at the end of this week!
11-28-11-29 - Was out of the office yesterday, so apologize for the skipped day. Worth the wait though, as Heathers white count was up to 1.2 and will likely be close to 3.0 today. (normal is 5.0-10.0). The immature cell count must be above 1.0 for two consecutive days for release and she was at 1.1 yesterday. Therefor, all indicators are for release this Friday. She will remain on imuno-supressants for at least 6 months, to help insure there is minimal GvH disease and will be confined to the house for at least 8 more weeks. Don't forget Heathers preferred gift of donations to the Leukemia and Lymphoma Society...without that research this "mini-transplant" would not have been possible!
11/30- Although it feels like downhill, challenges will likely continue to rise. Side effects from low magnesium led to cramping in her legs and thighs through the day. Can you say u-n-h-a-p-p-y? The good news is that her white count hit 2.0 (not the 3.0 I was hoping for, but the trend is good) . The immature cells were again above 1.0, so that hurdle is cleared. We have begun the process of inquiries with the prescription drug plan we have to get the longer term meds filled and I began taking some items home in preparation, so our expectations mount for a homecomming Saturday at the latest.
12/1- I was hoping to say we have homecomming, but as I post this at 10:45 there is no determination yet. Heathers whites are at 3.0 and her platelettes and reds are comming up. After IV magnesium was administered the cramping stopped so it is simply a question of whether they are satisfied with her medication levels . If not today, then tomorrow. I will certainly update on Monday and then will likely go to weekly postings.
12/2-12/5 - HOME AT LAST! Released on Saturday. Have to see the docs 2X /week and went this AM to Philly where everything checks out as good as can be. Heather is slowly gaining energy and strength and is already letting me know where my housekeeping techniques have gone astray...a positive sign of no loss of acuity and sense of observation! I'll update weekly from here on in unless something crops up. Thanks all for your support!
12/20/05 - Well, things have progressed nicely. No complications whatsoever. Early weakness has been overcome with energy and good spirits. Heather is baking up a storm for the holidays, and back to household chores and working part time from the house. She must remain homebound for a few months. A chimerism test, to distinguish how much of her marrow is Lynns vs hers was taken last week and results take two weeks. Keep your fingers crossed!
01/06/06- Happy New Year! , and indeed it is. No complications, no signs of rejection. We had a chimerism test done, which measures the % of Lynns cells that have engrafted vs Heathers old cells. We were told that 60% at this point would be a good number, but 40% is not abnormal. Heathers came back at 100% fully engrafted. Another sign of her incredible super human metabolism! The danger of nasty GvH is past and only time will tell if a chronic symptom pops up, but at this point we can say the chance of her PML recurring is near zero. She has begun to work out and still is targeting the Dublin marathon, so further donations as defined above (in this color) would be most graciously accepted.
1 Comments:
Was looking at your site for sourcing needs. I will include your wife in my prayers and I hope she is well.
bill teck
10:42 AM
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