The Latest Information on Joy

Team Joy Light the Night Walk

2010-10-05T15:32:00.001-06:00

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

2009-10-13T09:40:00.003-06:00

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

2009-06-29T09:21:00.002-06:00

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

2009-03-06T13:59:00.010-07:00

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

2008-10-26T18:53:00.001-06:00

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

2008-09-21T18:49:00.002-06:00

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

2008-08-14T20:00:00.002-06:00

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

2008-07-23T17:12:00.003-06:00

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 . . .

2008-06-02T18:29:00.003-06:00

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?

2008-05-06T22:20:00.003-06:00

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!?!

2008-04-19T11:55:00.004-06:00

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

2008-03-19T10:07:00.002-06:00

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

2008-02-26T16:11:00.004-07:00

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!

2008-02-25T14:57:00.003-07:00

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

2008-02-07T11:44:00.000-07:00

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?

2008-02-03T18:22:00.000-07:00

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

2008-01-28T18:18:00.000-07:00

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!

2008-01-24T17:37:00.000-07:00

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"

2008-01-17T19:53:00.000-07:00

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!

2008-01-11T22:19:00.000-07:00

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.

Happy Spirits

2008-01-05T18:08:00.000-07:00

After 5 days of radiation, Joy is STILL in good spirits and (miraculously) remains her cheerful self. :)

Back in the Saddle Again . . .

2008-01-03T21:49:00.000-07:00

Joy started off the new year by preparing for her new self. She is currently in her third of six days of TBI (total body irradiation treatment). This entails her being treated on each side for about a 1/2 hour. Her doctors place a lead shield over her lungs to protect them while the rest of her body is being treated. She also receives special medication for her skin because the radiation is so hard on it. However, in true Joy fashion, her skin still looks beautiful!

After the six days of radiation, she will receive three days of intensive chemotherapy that should kill off all of the rest of her bone marrow so that she will be ready for her transplant. She is feeling pretty good, was able to watch an episode of "Lost" and even felt well enough to complain about the hospital food. Yay for Joy!

Joy's family would like to invite any family members and friends who are willing 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 her behalf. Ken and Joy are both so grateful for all of the prayers people have said for Joy!

Above is a picture of Joy's time at home for Christmas. Enjoy!

Spa Day Hospital Style

2007-12-22T18:38:00.000-07:00

Joy got the full works at the hospital yesterday in preperation for all of the treatments she'll need before the transplant surgery. She had cardiograms, pulmonary tests, ct scans, and yes, she can even tell you her lung size because they were measured too! She also got to see the radiation machine which looked vaguely familiar as a cross between a pilates machine and an exercise bike.

She wrapped up the day with a visit to the dentist to get her teeth cleaned because she won't be able to do this again for at least a year.

After this full day of treatments, she and Ken are looking forward to a relaxing Christmas with the kids (if only they could convince them to sleep in on Christmas morning!--suggestions anyone?).

Peach Fuzz

2007-12-18T16:55:00.000-07:00

Both Joy's hair and blood are currently growing. Her blood cells are increasing so much that she should feel good for the holidays. She is also excited because her bone marrow transplant has officially been scheduled. January 10! Happily, the donor's donoting actual bone marrow instead of just stem cells. She'll be entering the hospital January 1 and will stay until well after the operation.

But what is REALLY making Joy excited is that she and Ken have just completely finished ALL of their Christmas shopping and some kind neighbors have been doing all of the gift wrapping!--Jealous anyone?

Christmas Gift

2007-12-12T15:13:00.000-07:00

So, unfortunately because Joy's brother Darren has some certain antibodies in his blood, he is not able to be a bone marrow donor for Joy. However, Joy and her family have received a special gift for Christmas.

Ken's words are below:

The hospital just called. They have identified a donor match for Joy! He is a 10 for 10 match. This means that according to the technology used today, he is the best match that can be found. We also know that he is 43 years old. Because of privacy issues, this is all of the personal information that we will ever know. The doctor is recommending to perform the transplant just after the first of the year.

We are all very, very grateful. :)

Delightful Decorating

2007-12-10T22:40:00.000-07:00

Joy is now at home with her kids and has been happily spending the last little while decorating for Christmas. Deciding they wanted to help, the twins made a display of stealing ornaments and climbing on everything possible. Fortunately, they are still with us.

Due to her continual treatments, Joy's blood counts are continuing to drop. She is receiving transfusions every other day and is continuing to feel better as a result.

We are proud of your progress Joy!!

Free Again

2007-12-05T23:55:00.000-07:00

Yes. Joy is once again out of the hospital! She has finished her third round of chemotherapy and is now free to leave. Because her kids are all sick, (darn the winter!) she is currently staying at her parents' house. She also received some other good news today. She had a spinal tap done to see if she had any cancer cells in her spinal chord fluid.

She does not. :)

Toodles

2007-11-28T18:15:00.000-07:00

Joy has loved being home and has expecially enjoyed watching the twins toodle around. She had a lovely Thanksgiving and was greatful to be home! She administers shots to herself everyday and will be receiving another round of chemotherapy withing the next few days.

Homeward Bound

2007-11-14T22:15:00.000-07:00

To the delight of Ken, Olivia, Joshua, Grace, Eleanor, Noah and everyone reading this blog, Joy came home today. Her children made a banner in honor of the occasion. She will be home until the 30th. Hooray!

Because, she is still weak, she still cannot accept visitors. She wants everyone to know, however, how much she loves them!

The OTHER good news is . . . her cancer is currently in remission!

Coming Home :)

2007-11-13T06:18:00.000-07:00

Joy starting feeling NORMAL today. She took a walk outside today. AND, she'll get to come home sometime this week. Hooray!

She is thrilled to be coming come. Because she is still weak and needs rest, however, she will not be able to see visitors. Please let her know how much she is loved by sending comments to the blog.

happy, happy . . .

2007-11-09T23:29:00.000-07:00

This will describe all of you at the end of reading this posting.

First of all, Joy will be able to go home mostly likely within the next several days.

Secondly, her white blood cell count is up to 1100, exceeding the doctors' expectations.

Finally, (this is so good that i'm going to make you read this extra stuff before getting the news--just to make you savor this more) . . .

Darren (Joy's older brother) is a donor match.

Ken and Joy and both of their families are very grateful for this news and feel especially grateful to all of those who have been fasting and praying in Joy's behalf.

:)

2007-11-07T11:20:00.001-07:00

Joy had a FANTASTIC Halloween! (pictures coming soon.) She got to watch 24 (scary, i think, even when it's not halloween).

Unfortunately, her Typhlitus has been causing her a lot of pain over the last couple of days. She's now on some opiates from an IV that have been helping her feel better. She also had the tube taken out of her collarbone. This means that it will be easier for her when she returns home.

And . . . the big news is . . . her white blood cell count (the good kind) went from 8 on Monday to 80 on Tues. Hooray! If they continue to increase, she can return home.

Bone Marrow Transplant

2007-11-01T19:18:00.000-06:00

Joshua (age 6) snapped opened a chicken bone today and informed me that the gooey red/black stuff inside was bone marrow. "This," he said, "is what makes your blood." I've eaten hundreds (maybe thousands?) of chickens in my life and have never seen its bone marrow. It's pretty gross. :)

This 'goo' is what Joy will need to have transplanted. On Tuesday, one of Joy's doctor's, Dr. Peterson, sat down with all of her immediate family that was in town and held a meeting informing us all of the details of her bone marrow transplant.

Basically, having a successful transplant greatly improves her chances of recovery. Many factors go into her having a successful transplant.

1) She will have to have radiation therapy to further destroy any remaining cancer cells. She will receive radiation in several small doses. Together, these doses add up to a larger dose than is typical for radiation treatment, but the breaking down of the doses allows for her body to accept more of it in a healthier way.

2) She needs to find a bone marrow donor. Ideally, she would have what is called a 10 out of 10 match. Some transplants have been done with an 8 out of 10 match, but the better the match, the better the chance of Joy's body accepting the transplant. None of the four siblings that have been tested are matches. Her brother, Darren, has been tested and the results of the test will come in Friday or Monday. In case he is not a match, Joy's doctors have been looking at a worldwide donor list. Apparently, the chances of her finding a match in this list is greater than 85%. Already, her doctors have found 64 possible candidates. These candidates are now being tested to see if they are exact matches.

3) Once she has found a donor, it is important to determine whether or not her cancer is in remission. The transplant is smoother and more successful if this is the case. If this is not the case, she will be given another round of chemotherapy before undergoing the transplant.

4) There are two ways to obtain bone marrow from a donor. The first involves exatracting it directly from the host's pelvic bone. The host is given anesthesia and then the marrow is extracted. This is a good option if Joy's cancer is in remision because the marrow will not contain white blood cells from the host and thus there will be less of a chance of a clash with the host's immune system. The second involves giving the donor medication which induces extra bone marrow production. The marrow is then harvested from the donor's blood stream over a few days. This is the best option if the cancer is NOT in remission because the donor's white blood cells can sometimes help combat the remaining cancer cells. Although each option is best for a different scenerio, it is up to the donor which extraction method he or she prefers.

5) The transplant involves taking the donor's marrow and injecting it directly into Joy's bloodstream. Her bloodstream then takes the marrow and integrates it into her own, hopefully replacing the mutated marrow.

6) Dr. Peterson is an expert in bone marrow transplants and has overseen over 5,000 transplants in his career.

7) Because Joy is young, she will have a full transplant instead of the 'mini' transplants often received by elderly patients.

We all learned a great deal in the meeting and are very grateful for Dr. Peterson. Joy (as always) is looking beautiful in her scarf and (of course) painted toenails.

Joy's new look.

2007-10-29T21:53:00.000-06:00

Joy is REALLY feeling better after her chemo! :)

Meals

2007-10-29T11:31:00.000-06:00

Ken and Joy have been so grateful for all of the help people have been giving them with meals. If you are Joy's ward and would like to provide a meal to the Woolley family, please call Robin Hendrikson, the compassionate service coordinator of their ward. Her number is 801.253.1188.

Thanks!

Tythitias?

2007-10-25T19:11:00.000-06:00

Right--large medical name for a small complication of chemotherapy. Basically, it means that Joy's colon is infected because there are no white blood cells to combat bad bacteria. She's currently being treated with large doses of IV antibiotics and we're hoping (keep your fingers crossed!) that she does not need surgery.

Good news is, she was up and about today. She's been done with chemo for a few days and is sooooo grateful that it is done for now.

Bone Marrow Transplant

2007-10-24T13:54:00.000-06:00

As usual--there is both good news and bad news.

(Let's do the good news first.)

Joy has finished her second round of chemotherapy and is VERY happy to be done with it!

(Okay-second part)

All of her siblings but Darren have been tested to determine whether they possible bone marrow donors. Sadly, none of them are. Ken and Joy know that many of you are aware of this and they have received numerous offers from friends to be a donor. How nice to know that so many love Joy enough to sacrifice for her! Unfortunately, however, because of the way bone marrow transplants work, the likelihood that a friend will be a match is pretty much nil. Thus, because of the time and expense involved in testing people, Joy's doctors have decided to expedite the process by not testing any of her friends or other relatives and trying the National Registry of donors for a match instead.

Joy's doctors are holding a meeting for Ken and Joy's parents and siblings on Tues. Oct 30 at 2 pm. The meeting will be at LDS hospital and the doctors will explain the details of bone marrow transplants and will answer any questions.

movies with mommy

2007-10-21T22:48:00.000-06:00

Joy is currently on her fourth day of her second treatment of chemotherapy. She will finish Tuesday morning-Hooray!

This weekend brought a few pleasant events. She got to take a walk in her 'hazmat' suit, complete with gloves and mask. She also began the first weekly, 'movie with mommy' night on saturday. All three of her oldest children came to her room and they watched The Incredibles together.

Overall, she was feeling better today. We hope it keeps going well!

Thursday, October 18th: A Long Road Ahead

2007-10-18T20:16:00.000-06:00

Joy has learned that her exact type of mutation in her cells causes a fast-growing cancer. This means that she will most likely need to have a bone marrow transplant. Receiving a bone marrow transplants can be a very dangerous procedure, and Joy would require a match. Each of her siblings have a 25% chance of being a match, so all of her siblings have been tested and results are pending.

Joy has been feeling good these past few days, which is wonderful. Her first round of chemotherapy was quite successful; however, her cancerous cells have not been fully eliminated, so she will be starting a new round of chemotherapy and will be at the hospital a month longer. Please continue to keep Joy in your prayers.

New results

2007-10-18T03:35:00.000-06:00

The results of Joy's second cytogenic test came back and she is something called FLT3-positive. FLT3 gene mutations are an alteration in the DNA of the leukemia cells. They occur in up to 40 percent of AML cases and cause the leukemia cells to grow more aggressively and are less amenable to cure.

In short, this means that Joy may be a candidate for a bone marrow transplant in the future. All of her siblings have been tested and we are waiting to see if any are a match. If not, she can also access an international bank of bone marrow donors.

The good news is that Joy continues to feel more energetic every day. Thank you for all your prayers. More news later. . .

happy anniversary

2007-10-15T22:19:00.000-06:00

Joy felt good today. Really good. AND . . . it is the second day in a row that she is feeling so good. Although she's still feeling nauseous, she's had some transfusions which have really helped.

What REALLY helped, however, was her surprse outing with Ken to have a personalized tour of the hospital's helicopter pad complete with a view of the city lights. After, both Ken and Joy returned to her room where they consumed both chocolate cake and a delicious movie.

Happy Anniversary! :)

3 Ward Fast

2007-10-14T22:09:00.000-06:00

Joy is feeling good today. Very good. In fact, she got to take a walk around the hospital. She also ate part of ALL of her meals today (first time this has happened). She has been alert, happy and joking around.

Her white blood cell count is still the same, but she is FEELING better.

The real miracle of the day, however, is that members of three different wards participated in a fast for her today. Ken's parents' ward, the Holladay 4th ward, Joy's parents' ward and Ken and Joy's home ward all sacrificed for Joy. Both Ken and Joy are deeply grateful for the faith and love of all the wards' members.

Hooray!

2007-10-13T23:47:00.000-06:00

Two good things happened today.

1) Joy was REALLY tired until about 4 this afternoon. (no, this is not the good news.) But then she got a red blood cell transfusion and was almost back to her old self.

2) Joy's white blood cell count got up to about 300 today. (this IS the good news)

Yeah JOY!

24

2007-10-12T22:17:00.000-06:00

Much to her relief, Joy finished chemotherapy yesterday. Her white blood cell count is still at zero, but should be coming back up soon. Although she is still really tired and nauseated, she is feeling slightly better because she found a nausea medicine that seems to be working.

The highlight of the day came when she got to watch an episode of 24 with Ken. Hooray for suspense-filled, distracting TV!

Oh!

2007-10-10T21:55:00.000-06:00

Joy is really feeling the effects of chemotherapy, complete with extreme tiredness and nausea. Her doctors gave her some hemoglobin transfusions today which helped her to feel a little better.

The REAL thing that helped her feel better, however, was a visit from her favorite two babies. When they entered her room, Eleanor let out a gigantic OH! which was followed by a HUGE hug.

Joy also got to meet Dr. Clyde Ford today, not only one of the best doctors in the intermountain west, but also the doctor who treated Elder Maxwell.

Jelly Doughnuts . . .

2007-10-09T22:36:00.000-06:00

Okay--more on that later. First, Joy is continuing her course of chemotherapy. Her white blood cell count is still zero (good). And her platelets are back up in number (very good). In fact, the platelets are up so much, she gets to stop her continuous platelet feed and is only receiving two transfusions a day.

She didn't sleep much last night BUT feels better this afternoon. This could possibly be due to the delectable apricot jam-filled doughnut that she ate. Yum!

In addition to the doughnuts, she also REALLY appreciates all of the love she's felt from everyone!

Inconclusive News

2007-10-09T14:57:00.000-06:00

Joy received the results of her Cytogenetics test yesterday and the results were inconclusive. Basically, the cells that were taken for the test were not cancerous (mutated) and so no information could be received from them.

The GOOD NEWS is: ALL of Joy's white blood cells have been destroyed. (This is a very, very good thing). This means that most of the cancerous cells have been eradicated.

She still is having trouble with the blood clot in her arm and is still on blood thinning medication.

We love you JOY!

From Ken :)

2007-10-07T22:00:00.000-06:00

Joy did not get much sleep last night. Since they put her on anti-clotting medicine for her blood clots in her leg and arm, her blood line (the line where the medicine and blood enter her body just below her clavical) began to bleed. They had to re-adjust it 5 times during the night. That's the bad news. The GOOD news, however, is that the Chemotherapy is working BETTER than the doctors had expected. After just 4 days, her white blood cell count was amazingly down to 600. They have put her on continuous platelet transfusions and are also giving her hemoglobin. She actually felt pretty good this afternoon, and spent some time listening to conference. She is very positive, but really misses the twins. I can’t bring them into her room because they have colds. However, they are appearing each day in twin flicks. Noah really started to walk today, and I caught it on film!

Yesterday, all the kids got to visit her. The doctor explaining what Leukemia is to the kids. Thank you doctor! She pulled up pictures of cells to show them. Of course, the kids were more interested in seeing pictures of hearts and brains. Their favorite was a very gross picture of a goat’s heart. Eventually she got back around to explaining about Joy and bone marrow. They and I all learned a lot. :)

Better and Better

2007-10-06T23:40:00.000-06:00

Joy's white blood cell count fell from 18,000 to 1,400 in the last couple of days. This is REALLY good news. She finished one of her chemo medications today and will continue with another one for four more days.

Much to her delight, she also got to see her three oldest children today. They took a first class tour of Joy's hospital area, including a personal interview with Joy's doctors.

That is all for today.

We love you Joy!

Rapunzel Rapunzel . . .

2007-10-05T18:22:00.000-06:00

We have good news! Joy is responding very well to chemotherapy. Her white blood cell count fell from 100,000 to 18,000 over the course of the last couple days. (For the other non-Dr's out there, this is a very good thing.) She hasn't received the results of her Cytogenics test yet but will know much more when she does.

Although she had an infection in her arm that required her to take antibiotics and blood thinning medication, she was feeling okay this afternoon. She also received a new hairstyle from a special friend of hers. . .

That's all for now!

Mountain Views

2007-10-04T22:12:00.000-06:00

As a result of her hemoglobin transfusion yesterday and her constant platelet transfusions today, Joy is feeling better today than yesterday.

Clad in rubber gloves and a face mask and with an IV in tow, she got to take a stroll around the floor of the hospital. Although she was excited about this, she was even MORE excited when Ken brought the two twins to see her.

To make the day even better, she was moved to a different room. Now, she gets to gaze at the mountains (a significant improvement from the brick wall she got to look at before). Hooray for LDS hospital!

She started Chemotherapy yesterday and will continue with it for 5 more days. Even though she feels okay now, because the treatment destroys all of her white blood cells, she'll feel progressively worse over the course of the week.

That's all for now. We love you JOY!

An Enormous Thank You!

2007-10-04T12:55:00.000-06:00

Ken and Joy want to thank all of you who participated in the fast for Joy yesterday. It has really helped them to feel at peace about the situation. Please especially include Joy in your prayers this Friday, when we will receive more conclusive information about her condition.

Joy's Progress

2007-10-03T16:28:00.000-06:00

Joy was given hemoglobin today and is feeling better because of it. But, she's tired because she's been poked and proded all day. Luckily, she now has a bloodline from her collarbone. What this means in normal terms is: no more poking and proding!

Ken has received more info on exactly what type of AML Joy has. As of now, her doctors believe she has AML M4. This means that the white blood cells morph at stage 4 in their production. The prognosis for this type of AML is average for all AML. For more information on AML, click here: Acute Myelogenous Leukemia

More about her prognosis will be determined on Friday when the results of a cytogenic test will come in. This will determine more about her specific case of AML M4 and what should be done after chemotherapy.

Right now she's being treated aggressively with Chemotherapy. She is being given two drugs, one for three days and one for seven days. She will not be feeling well at the end of the seven days. At the end of the seven days they will retest her to see if the cancer is in remission or not.

As for VISITORS, she is very weak and can only see visitors for 10-15 minutes at a time. Please be respectful of this. Also, because she does not have an immune system right now, she CANNOT be exposed to anyone at all sick and no children.

Ken is again grateful for all of the love and support he has received!

WHAT TO DO TO HELP

2007-10-03T16:17:00.000-06:00

This is CK, one of Ken's many sisters. Ken, his mother and Joy's parents and I all met last night and figured out a game plan to manage things while Joy is in the Hospital. There are a number of things that we can do to help, whether we live near or far. Please see the right side of this blog under "HOW TO HELP" to find out what you can do.

I know Ken and Joy are both very grateful for all of those who have reached out to them. They feel blessed to have so many wonderful friends.

Joy's Diagnosis as of Today

2007-10-02T14:11:00.000-06:00

On Monday, October 1, Joy was diagnosed with Acute Myelogenous Leukemia (AML). She is being treated at LDS Hospital in Salt Lake City and will be remaining there to undergo intensive treatments for the next month. We will be providing regular updates on her situation as we receive them. Thank you for all of your love and support.