8APR2014 Update

Whitney was very tired and lethargic once again today. She still isn't very hungry, but the vomiting has subsided. More test were done today with the spinal tap I talked about yesterday and an additional CT scan.

We had another very good visit with the doctor today and gained quite a bit of clarity about the over all situation, some of which I posted earlier today. We are currently fighting what appears to be two areas of infection. With her compromised state they are giving her some very strong antibiotics to try and get the infection knocked out. Needless to say, Whitney is pretty miserable now.

Now on to the positive FLT3 mutation. Initial treatment methods do not change with this condition and initial remission success rates are very similar to regular AML. With the FLT3 mutation, Whitney is almost guaranteed to have a relapse. Current practice is to attempt a bone marrow / stem cell transplant as soon as possible after the first remission. This will give her the best possible chance of beating this and staying cancer free.

Overall it was a pretty rough day for all of us...

Whitney did get some mail and a flower delivery today and this was the only picture I got.

Whitney has a FLT3 Mutation

We were informed today that Whitney has what is known a FLT3 mutation with her AML. I am currently trying to research what this means for sure, but the doctor told us she will need a bone marrow / stem cell transplant.

First reaction is does she need a donor and the answer is yes. Next question is will I be a match and the answer is probably not.

Sign up anyway!!! at bethematch.org

Below is an excerpt from the cancer.gov site on the FLT3 mutation.

Acute Myeloid Leukemia With Mutations of FLT3, NPM1, or CMBPA

Activating mutations of FLT3 (FMS-like tyrosine kinase-3), present at diagnosis in 20% to 30% of de novo AML, represent the most frequent molecular abnormality in this disease.[38,39] The most common type of mutation (23%) is an internal tandem duplication mutation (FLT3/ITD) localized to the juxtamembrane region of the receptor, while point mutations in the kinase domain are less common (7%). Common clinical features of patients with FLT3/ITD AML are:

• Normal cytogenetics.
• Leukocytosis.
• Monocytic differentiation.

Patients with FLT3/ITD mutations, and possibly those with FLT3 point mutations, are consistently reported to have an increased relapse rate and reduced overall survival (OS).[40,41] The CR rate for patients with FLT3-mutant AML is generally reported to be no different than that for patients with AML with nonmutant FLT3, but most studies examining this clinical parameter used results from patients treated with intensive chemotherapy regimens, and some data are available to suggest that the conventional 7+3 regimen leads to a reduced remission rate in this group of patients.[42][Level of evidence: 3iiiDiv]

One study from the German-Austrian Acute Myeloid Leukemia Study Group examined data on 872 patients with cytogenetically normal AML treated with intensive induction and postremission regimens over an 11-year period.[43][Level of evidence: 3iiiA] The study group found that patients with a mutant CCAAT/enhancer binding-protein alpha (CEBPA) or a nucleophosmin mutation (NPM1) without fms-related tyrosine kinase 3-internal tandem duplication (FLT3-ITD) had higher complete response rates, disease-free survival (DFS) rates, and OS rates (with a 4-year OS rate of 62% and 60%, respectively) than other cytogenetically normal AML patients (who had a 4-year OS rate of between 25% and 30%). As yet, no clear strategy exists for improving patient outcome in FLT3-mutant AML, or in patients with abnormalities other than CEBPA or the NPM1 without the FLT3-ITD, but small molecule FLT3 inhibitors are in development, and the role of allogeneic transplant is being considered.

7APR2014 Update

Update for Monday, April 7th, 2014.

Today went pretty much as expected with Whitney being very lethargic and "sickly." She is having difficulty walking or even standing at this point. The team changed doctors today and the new doctor talked with us about what his expectations were for Whitney and potential outcomes. He was very positive and he explained the process in much more detail than we had received before.

We have been her for 11 days, we finished our 6th day of treatment and now we are officially done with the first round of chemotherapy. We are currently fighting what I have referred to as a fine motor skill issue. Whitney is having what could best be described as twitches on the left side of her body and this is making it difficult for Whitney to use her left hand. This is what we brought the neurology team on board for. Current thinking is that some combination of the many medications are probably causing this. There is also a slight potential that the cancer has spread to the spinal cord. Sometime tomorrow Whitney should get a spinal tap to sample the spinal canal fluid for cancer and to also inject a small amount of chemotherapy drugs into the canal. Once we get the results back fro this we should know more.

There still is a possibility that Whitney may be able to make an appearance at the Kansas State Firefighters Conference banquet. We will have a much better idea once her white blood cell counts come back up in a few days. If the next couple of days go okay I will also try to go back to work later this week.

Whitney got a little bit of mail today and had a couple of visitors. Hannah Henderson and Michael Woessner came by today and they brought gifts from Starbucks. Well primarily the Lawrence Starbucks stores and from those who have worked at one of the Lawrence stores. Those that know us well know that we frequent coffee shops. Over the years we have made quite a few friends while making the daily trips to get some coffee. We were completely shocked by the amount of gifts that they brought. Just know that Starbucks is a big supporter of #TeamWhitney, show them some love.

Not very many pictures of Whitney today as she slept most of the day.

6APR2014 Update

Sunday started off pretty slow with Whitney really not being too excited to do much at all. She slept off and on until around 1 pm when she decided that she needed to eat. She woke up exclaiming that she wanted a taco salad. After a little discussion, we decided on some chicken nuggets with a fruit and cheese platter.

Whitney had quite a few friends show up today. She also decided that she wanted to get up and do a little walking while her friends were around.

She made it about a half a lap around the unit (1 lap = 1/16 mile) and decided that the wheel chair might be a better option. Once she was in the wheel chair she wanted to explore the hospital.

After this activity, Whitney was plumb wore out and we took her back to bed where she proceeded to fall asleep in about 5 minutes.

Overall she felt about how we figured she would, very tired and fighting nausea all day long.

Whitney had quite a few visitors today, thank you so much for stopping by!!!
Sara Neuburger
Larry and Sandy Dettmer
Breezy Olson
Beth Jenson
Megan Neubauer
Lori Swanger
Marie Meador
Jessica Cameron
Harold Herd
Ann Wilhelm
Debbie Crooks

Overall Whitney held up pretty good today, but she really didn't feel very good at all. We are still expecting this to be a very rough week. I would ask that we try to limit visitations during this work week. We will see how she feels towards the end of the week to make a decision about the weekend.

More pics:

5APR2014 Update

Doctor's are few and far between here on a Saturday. The chemo side effects are starting to kick in. Whitney was pretty tired all day and really didn't want to interact with people, or do much. No change from yesterday on the fine motor skill issue. We did get some feedback on the MRI with nothing remarkable found. They do want to follow up on something around her sinuses. Probably won't know much more until Monday as everything seems to be in maintenance mode during the weekend.

Nice talk with the nurse on what to expect for the rest of this treatment cycle. She thought that Whitney was entering a rough part of the treatment process and the next 7 days will be the worse with gradual improvement after that.

Most of Whitney's day was spent napping and seeing visitors. We did have a few visitors today as we tried to finish our taxes and get caught up on some laundry. No mail was delivered today.

Visitors today:
Mike and Alice Henning
Dick and Ann Ailor
Terry and Donna Maple
Charlie Copeland
Michael Ort
Pat Bartlett and Valerie Hoffsett

4APR2014 Update

Overall today was a pretty good day for Whitney. We really think the whole blood transfusion yesterday helped quite a bit. She also received smaller platelet transfusions overnight and again this afternoon. She received the last dose of one of the chemotherapy drugs and the other will continue for 4 more days. Her immune system will continue dropping until around the 16th of April. The team with then perform another bone marrow biopsy to see if the first round of chemotherapy was effective.

We met with the neurologist separately and they are really digging into her case. They are performing quite a bit of research and had a couple of suggestions that the treatment team agreed to. They also had a MRI completed today to take a look at her brain. I am glad we got them on board as we think there is a little improvement already with the fine motor skill issue. Whitney is still vomiting and has a lack of appetite, but those are well documented side effects of chemotherapy.

My parents, Dennis and Carla, made the trip today and spent some quality time with Whitney.
Lacey and Danielle Yordy made the trip from Riley County to visit Whitney today.
Whitney received several cards in the mail today.

Bonnie Visits Whitney

As a family we have always followed KU men's basketball as most people around Lawrence seem to. Quite a few years ago Whitney decided that she wanted to start attending KU women's basketball games. She talked Grandpa Dick into taking her to a couple of games and she ended up meeting Bonnie Henrickson in person.

Whitney and Bonnie quickly became friends and Whitney just had to attend every KU Women's Basketball function that she could. She bought season tickets to the games, she attended Hawk Talk, she joined the Hardwood Club, helped with basketball camps, she couldn't get enough of KU women's basketball.

We did everything we could to support this passion, even joining the Hardwood Club ourselves and supporting many functions with Whitney. The move to Riley County this year made things a little difficult, but we figured out a way, we shuttled her back and forth to Lawrence and attended road games in Manhattan and Aimes, IA.

When Whitney was diagnosed we knew that Bonnie would want to know and planned on getting a hold of her when we had time. I was also trying to keep quite a few friends and family members apprised of the quickly developing situation, so I concentrated my efforts to posting on facebook while we were taking care of Whitney's initial needs. As it turned out we didn't have to reach out to her, she found out and reached out to us.

Bonnie took the time to stop by between recruiting trips to make sure that Whitney knew that she was concerned about her. This speaks volumes about her character. I have always admired Bonnie for the way she makes Whitney feels special, but it's so much more than that. Bonnie is a wonderful, caring, compassionate woman and I am proud to call her a friend.