Team Joy Light the Night Walk

Hello friends & family!

As all of you know, I was diagnosed with a rare form of Leukemia in 2007. My doctors gave me my grim statistics: they could medically prove I had this for less than 2 weeks; if I had not received treatment when I did, I only had 2 days left to live; and I was given a 40% chance of survival. All of you were instrumental in helping me and my family overcome this disease. Thank you for your service, love, and concern.

I have not been active in charity work for a few years, but through my experience with Leukemia, I have decided to focus my efforts on the Leukemia & Lymphoma Society. This is due to their significant help that they gave to me and my family during my sickness. Two examples of this help include: 1) research and origination of technology and drug development funded by the Leukemia & Lymphoma Society whose technology and protocols saved my life and 2) free educational resources provided for patients and families touched by blood cancers. Ken participated in 2 conference calls and was able to get answers to our questions from international experts concerning my rare condition.

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research and providing education and services for patients and their families. The LLS research funding is aimed at effective discovery and development of new therapies for all blood cancer patients who need them. You can learn more about this society at www.LLS.org.

If you possibly can, I’m asking you to join me and my family for the “Light the Night” walk on Saturday, October 9th, at Sugarhouse Park and to make a donation as part of your participation. Light the Night Walk is LLS’s annual walk and fundraising event. On Walk night, participants gather in cities and towns across the U.S. and Canada and walk in twilight, holding illuminated balloons—white for survivors, red for supporters, gold in memory of loved ones lost. Anyone can take part—children, adults, and seniors are all welcome. This is a casual fundraising walk with no fitness requirements. Ken and I are so passionate about this endeavor that we will match any donation that you make. Donations are accepted in any increments and are appreciated even if you are unable to attend. For a $100 donation, you will receive an illuminated balloon, t-shirt, and dinner. Registration starts at 5:00 p.m. and includes dinner, live entertainment, and a kid zone. The walk will start at 7:15 p.m. You can also register on-line. To register to walk and to make a donation, visit www.lightthenight.org. Click on Register to Walk, then click on Join a Team. Look for Team Joy and Sugarhouse Park. If you are unable to attend but would like to make a donation to my team fundraising page, use the following link: http://pages.lightthenight.org/dm/saltlake10/TeamJoy. Click on Donate to a Team Member…Joy Woolley. “We all know someone with cancer. It’s time to walk the talk. Please join us and raise funds for lifesaving cancer research.” --Tina Fey, Light the Night Walk National Spokesperson

I know this is short notice, but considering a 1 ½ mile walk for all of you marathon and tri-athlete types will be a walk in the park (literally!) with no training necessary, I hope you’ll join us. We’ll see if you can out walk me with my 2 new titanium hips!

Loves,

Joy

Stinker Pokes

That's what Eleanor (my 3 year old twin) calls my insulin shots. This is one of the lovely side effects of the medication (Prednisone) the doctors put me on to shock my body. (The spleenectomy didn't work.) The hope was to see if the Prednisone could get my antibodies that fight my red blood cells under control. And shock it did! I won't bore you with the laundry list of side effects. The great news is that it worked! My red blood cell count is now in a normal range! I haven't had a blood transfusion in 2 months (after having them every 1-2 weeks for almost 2 years) and I feel more energetic. I am on a Prednisone taper and will hopefully be off of this med within a month...and the side effects should go away. I look forward to getting back to a normal life. It was 2 years ago this month that I was diagnosed with Leukemia and I am so happy to be alive...to be with Ken & my kids and to continue friendships and associations with all of you.

Spleenless and ready for Summer

Where does the time go? I try to wait for interesting/exciting news to update this blog...we are in the "wait and see" holding pattern again. I had my spleen removed in May in hopes of destroying the antibodies that fight my new red blood cells. The great news is that I didn't need a transfusion for a month after the surgery. It's too soon to see a pattern in transfusions, yet, but it definitely reduced the amount of transfusions that I've needed. I feel great and am able to take on a lot more than I have for the past year. I think my body is just used to functioning on half the normal amount of blood. I do look forward to normal amounts of blood and energy...SOON!

My doctors okayed a trip in April to the Florida Keys with Ken's family. Ken's parents were asked to preside over the Mormon Church in part of Russia, Kazakstan and Belarus. They will be living in Moscow for the next three years. Of course we will miss them and we will not see them very often. It was fun to all be together. A week after returning home from Florida, we flew to Disneyland with my parents. We loved spending time with our family! We're in the thick of birthdays right now. Olivia just turned 11, Joshua got baptized, Grace turns 6 in two weeks, and Eleanor & Noah turn 3 a few days later. We are in the epic stage of no diapers! The landfill is definitely grateful, I'm sure. It's summer...life is great! As always, thank you for your love, support, and prayers.

One Year Post Transplant

Many of you have asked about the blog and requested an update. I had no idea that people were still checking the blog! Thank you so much for your continued interest in my recovery and in my family.

I am feeling great...so much better than a year ago! It's hard to believe what has happened over the past year-and-a-half. I am a believer in miracles and am happy to be alive. I just had my one year post transplant review with my doctor. She reviewed all of the testing info they have gathered over the past month. Great news: there is no leukemia and my bone marrow is 100% fully engrafted. It is producing everything as it should. However, my body is still attacking the new red blood cells that my bone marrow produces. I receive blood transfusions every 2 weeks. The doctors are considering a few different options to combat this. As I get new information, I'll update this blog.

We enjoyed Christmas together as a family and spent New Year's in Las Vegas with Ken's family. Ken & I were completely shocked when my doctors approved a trip to Hawaii in January. We went with friends, without kids, and had a relaxing vacation.

Thank you for all of the love and support you have given to me and my family...the heartfelt notes and cards, phonecalls, dinners, carpools, childcare, and especially your prayers. Your friendship is a treasured gift. Thank you also to Ken's sisters for upkeeping this blog for so long.

Patience & The Magic Kingdom

The "wait and see" period progresses again as Joy waits to see how the Rutuxin will affect the sustainability of her red blood cells. She's finished her treatment with the drug and should know the results within a few weeks. Meanwhile, Joy continues to be a trooper as she gets her regular tranfusions and IVs and takes her many pills. In fact, she had a bit of a scare last week when the pharmacist gave her a double dose of one of her medications. This caused her kidneys to have problems and resulted in her being taken off other medications. Hopefully, being off the other medications will have no consequences. So far, so good!

At the same time, Joy, Ken, and the three oldests kids are thrilled that the doctors have cleared her to go to Disneyland next month with some family friends for a fun family vacation. Cheers!

New Season, New Treatment

Joy started a new medication this past week called Rutuxin. It's one of 5 "miracle" drugs for treating cancer and is usually used to treat lymphoma patients because it kills lyphocytes, a type of white blood cell involved in lymphoma. They're really hard to kill and Joy's doctors believe some residual O-type lymphocytes in her system might be responsible for killing off her new A+-type red blood cells. The drug is low-risk and she had her first dose on Tuesday. Unfortunately, when the doctors turned up the dosage, Joy had an allergic reaction and had to be hospitalized overnight. Fortunately, she was in the hospital, a great place to be when you have an allergice reaction! And, one of her favorite nurses was on duty to take care of her. Joy's back at home now and will continue to receive doses of Rutuxin each week for a month.

In other news, she and the family are all keeping busy with the advent of the new school year as well as chasing after two rambunctious two-year olds!

Small Wonders

Small things . . . but exciting ones--maybe. For the last two weeks, Joy has only needed half of the amount of blood in her transfusions as before. This could mean that Joy's red blood cells are starting to survive. And, this does mean that Joy's been feeling a lot more energetic lately--Hoorah!

Meanwhile, all the family spent some relaxing days around the pool in Las Vegas. (Even the twins slept better at night--hoorah!) Thanks again for all of your support.

Those Lazy, Hazy, Days of Summer

Joy's days are getting more relaxed--or, rather, her nights. She no longer has to give herself daily IVs of magnesium in the evening--she's been upgraded to pills. Yea! A great relief. Along with this improvement, Joy also gets to enjoy all the fresh summer fruits and veggies, previously forbidden. (Pull out your baby spinach, avocadoes, and poppyseeds! Joy has the best recipe for spinach salad with poppyseed dressing.)

Meanwhile, Joy still receives transfusion every one or two weeks while she waits for her red blood cell production to kick in without any glitches. Other than that . . . the waiting game remains the same. We'll be sure to update the blog as soon as anything changes. Thank you for all of your love and support!

Day 133 and Counting . . .

Day 133 and counting! Joy's counting to 200 now. The doctors have told her that it's not uncommon to take 200 days to feel much better for people receiving transplants from someone with a different blood type. This is why her red blood cells may not have come back in full force and so she still requires blood transfusions every other week.

Actually, Joy's bone marrow is producing red blood cells, but they seem to be destroyed quickly. This could be a problem stemming from medication that may be killing them. Tests are underway and the results should come in anytime. However, she's not showing any signs of the graph-host disease (Yahoo!) and she's producing white blood cells and platelets well. Also, it's anyone's guess what Joy's new hair will turn out like--it's coming back and seems thick and dark?!

Meanwhile, Joy's been keeping busy. She's been a trooper--she attended all the events of her sister-in-law's wedding. She's also been enjoying running small errands (imagine that!) with Ken in tow. And, she and Ken enjoyed their first walk together in a long time.

XY or XX?

During a long and very fruitful meeting with Joy's main doctor last weekend, Joy and many of her family learned some great news!

1) She had a biopsy of her bone marrow done and no luekemia was found.

2) All the bone marrow found was from the donor. This is good because it means her cancerous marrow is nowhere to be found.

3) Although she is not producing many red or white blood cells and will most likely require transfusions for the next 1-2 years, this doesn't necessarily mean her marrow isn't working, it just means that there are other factors mitigating its success.

4) Thus far she does not have graft v. host disease.

5) If her blood is DNA tested (next time Joy is in the Olympics) it will show up as being XY. (Okay this is only good news depending on your point of view, but I thought it was interesting nonetheless!)

6) Joy can exercise as much as she feels like.

We are so grateful to have this positive news! We love you Joy!

Happy Birthday Again!?!

Happy birthday to Joy! Joy celebrated her original birthday this month. And, happily, she had a birthday surprise of having no nausea for four days straight! This meant she got to enjoy celebrating her birthday with her siblings and going to another family party. She also got to take a relaxing and scenic car ride with Ken--yea!

Joy's also at her 100-day mark after the transplant. At this point her new bone marrow is doing a great job producing platelets and white blood cells. It's not producing red blood cells yet, and the doctors aren't quite sure why. However, red blood cell production usually increases between 80 and 120 days after the transplant, so she's still right in the middle of the time frame. She's started to have a lot tests for the 100-day mark, including a bone marrow biopsy which should help the doctors understand more about the red blood cell production and how to treat Joy more specifically. Meanwhile, Joy continues to give herself nightly IVs and remains restricted from travel.

On another note, the kids have been illness free for 2 1/2 weeks straight, meaning Joy's been able to be with them at her own home! Hoorah! Grace, thrilled and intrigued about this development, asked a visiting friend, "Do you want to come see my Mom?" Show and tell or no, Joy's having a great time being with the kids, particularly as the twins are becoming more and more chatty. And, Joy's even been able to do pilates a couple times a week for about 10 minutes a time! :)

A vs. O

Right now, Joy's blood cells are in battle. Joy's original blood cell type, O does not like the type A blood cells that her new bone marrow is producing. Thus Joy is getting a blood transfusion every two weeks. These are helpful but also make her very tired. She will most likely be very exhausted for the next several months and won't be feeling much better for the better part of a year.

She is currently staying at her parents house because her twins are sick. But she is hoping to see them for Easter!

Thank You and Fast Invitation

Joy is back home -- to her real home now. While things are progressing, Joy is still having problems with her red blood cells. Because the blood-type from her bone marrow transplant is different from her old blood type, her antibodies are attacking her red blood cells as foreign. The problem was expected and should eventually dissipate, but, in the meantime, this means Joy still needs transfusions. She had one today and all went well.

Meanwhile, Joy's family would like to invite any family members and friends to fast on her behalf this Sunday. For those unfamiliar with fasting, this entails abstaining from food and water for two meals and accompanying this sacrifice with prayers on Joy's behalf. Ken and Joy are both so grateful for all of the prayers people have said for Joy.

Also, Joy and Ken and their mothers want to thank so many friends and family who have been bringing meals to Joy's home and supporting Ken and the kids in other ways. Your efforts have been so appreciated. :)

Home Sweet Home . . . Almost!

Joy has returned home . . . almost. She's staying with her parents since the twins are sick. While the transplant is still progressing, Joy has to be very careful not to get sick. She has a weekly doctor's appointment and things are going along as expected. The goal is to have her stay healthy for the first 100 days (through April) of the transplant. In fact, with a brand new immune system, she'll be needing her baby immunizations again in about eight months.

Still, she's recovering well--she's just tired a lot of the time and needs to sleep 14-16 hours a day. But, she's having a great time getting to be around family all the time and finally having a room with a view again!

Joshua to the Rescue

Joy's not home yet. She's having a colonoscopy today to see if she has an infection or the graft vs. host disease. Both would keep her in the hospital. She's quite disappointed, but she'll hopefully be out in the next 4 to 5 days. The delay at least gives the twins a few more days to get better from being sick themselves since they can't be around her until they're better. Of course, her whole family wants her home, so Joshua went over to the hospital today to cheer her up. :)

Tennis Anyone?

Joy is doing wonderfully. Her blood counts have come way up. Her white count is 1900 and her Nutriphils are at 900+. She will even likely be able to go home this week! However, she needs to be able to eat normally before they will discharge her.

Meanwhile, Joy had a special night with Joshua this week. They played tennis and car racing on the Wii and watched Night at the Museum. Needless to say, Joy's been keeping the nurses entertained with her activities!

A Molehill That Is A Mountain

On Saturday, Joy was given Nupigen, a drug that aids in the production of new blood cells. Today, doctors found a few new white blood cells and Neutrophils, both signs that the transplant is working. As Ken put it, "tiny progress shows the process of the transplant has started." :)

On another front, Joy got to eat her first non-intravenous meal in weeks since the ulcers in her esophagus are finally healing--jello and soup. Mmmm . . .?

She'll be Singing in the Shower Soon!

Ken's mind-reading days are over--Joy's voice has come back! Even though she still can't swallow yet, she's had a few things to sing about. She's been feeling much better the last few days since the doctors found a more effective pain medication for her--Hoorah! She 's had two play dates this week with the toodling twins who are finally healthy again (fun for babies and mom!)--Hoorah! Hoorah!

"Guten tag"

Joy's recovering slowly. She has ulcers in her mouth and esophagus, a delayed effect of radiation, that make eating and talking painful--not so fun. However, Ken's having fun getting to say whatever he thinks she's thinking!

Although they won't know the success of the transplant for a few weeks, Joy and Ken did get a hint that the donor might be from Germany. Joy's paternal Grandmother emigrated from Germany as a child. Kinda cool! So, "auf wiedersehen" for now!

Happy Birthday to Joy!

Yesterday, amidst an array of birthday cakes, tarts, italian food and really yummy cookies, Joy celebrated her new birthday. The bone marrow arrived in the afternoon and after some preparation, Joy began the transplant. Contrary to popular belief, this did not entail a messy surgery in an operating room. Rather, it was just Joy and some IV's (and her cake of course.) At one point during the transplant, Joy became flushed, then white, and then felt her airways becoming restricted. Thanks to a very helpful nurse who realized she was suffering from an allergic reaction, she received some Benadryl. (The doctors said this was normal because she was receiving bone marrow of a different blood type (A) than her old blood type (O). She was fine for the rest of the day, just really tired. (But not too tired to enjoy 'The Germans" episode of Faulty Towers.)

The doctors will know within about two weeks how well Joy's body has received the transplant. Until then, it is vital that she be kept away from any and all germs.

Ken and Joy both feel grateful for all of the people who fasted on Joy's behalf on Sunday.