Saturday, December 22, 2007

Spa Day Hospital Style

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?).

Tuesday, December 18, 2007

Peach Fuzz

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?

Wednesday, December 12, 2007

Christmas Gift

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. :)

Monday, December 10, 2007

Delightful Decorating

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!!

Wednesday, December 5, 2007

Free Again

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. :)

Wednesday, November 28, 2007

Toodles

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.

Wednesday, November 14, 2007

Homeward Bound

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!

Tuesday, November 13, 2007

Coming Home :)

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.

Friday, November 9, 2007

happy, happy . . .

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.

:)

Wednesday, November 7, 2007

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.

Thursday, November 1, 2007

Bone Marrow Transplant

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.

Monday, October 29, 2007

Joy's new look.







Joy is REALLY feeling better after her chemo! :)

Meals




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!

Thursday, October 25, 2007

Tythitias?

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.

Wednesday, October 24, 2007

Bone Marrow Transplant

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.

Sunday, October 21, 2007

movies with mommy

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 18, 2007

Thursday, October 18th: A Long Road Ahead

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

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. . .

Monday, October 15, 2007

happy anniversary

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! :)

Sunday, October 14, 2007

3 Ward Fast

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.

Saturday, October 13, 2007

Hooray!

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!

Friday, October 12, 2007

24

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!

Wednesday, October 10, 2007

Oh!



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.

Tuesday, October 9, 2007

Jelly Doughnuts . . .

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

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!

Sunday, October 7, 2007

From Ken :)








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. :)


Saturday, October 6, 2007

Better and Better

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!

Friday, October 5, 2007

Rapunzel Rapunzel . . .


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!

Thursday, October 4, 2007

Mountain Views

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!

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.

Wednesday, October 3, 2007

Joy's Progress

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

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.

Tuesday, October 2, 2007

Joy's Diagnosis as of Today

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.