Tuesday, April 29, 2014

Round two of Chemotherapy

The bad news started creeping into the picture last week. Whitney's recovery plateaued the previous week with very little improvement last week. When her blood counts failed to recover late last week we pretty much figured something was wrong.

Whitney was disappointed about not getting out last weekend and she is getting very tired of being in the hospital. This news was not taken well, she wants to go home. It breaks my heart to have to tell her that she has to repeat the last month over.

All we can do is take this news in stride as this happens sometimes. It is not uncommon to go through multiple rounds of chemotherapy to get into remission. Each round just gets a little harder on the body as the drugs target quickly reproducing cells and can't distinguish between good and bad cells. We just have to reset the calendar and start counting down the days again.

Sunday, April 27, 2014

Whitney in 1988

While I was looking through some pictures for the story Against All Odds,  I got the idea of doing a photo journal series about Whitney broken down by year. I will start with 1988, the year of her birth.

 In addition to the photo that was included in Against All Odds, we have another one that isn't too graphic for this setting.

Here is a picture of a very young Lisa holding Whitney.

Here is Whitney in her hospital bed.

Here is Whitney in her Christening gown.

Whitney has been a KU Basketball fan for a very long time.

Whitney attended her first horse show.

  Here is Whitney dressed up for Halloween.

 Here is Whitney on Santa's lap.
Here is Whitney's first Christmas Picture.

Saturday, April 26, 2014

Week Four

Good news this week is that Whitney is starting to feel a little better for longer periods of the day. She is keeping food down pretty good and is having less accidents. Bad news is the original abdominal pain is back. More test are being scheduled to try and figure out what is causing the pain. I am hopeful they figure something out soon.

I had the Kansas State Firefighters Association annual conference to attend Thursday thru Saturday this week and we were hopeful that Whitney would be recovered enough to make an appearance at the Friday night banquet. Her white counts are still too low and she can't leave the hospital, so she didn't get to go. She was sad about that, but she insisted that Lisa go ahead and come out to the conference to be with me. That is Whitney, thinking about everyone else first. Here is a picture of Lisa and me at the banquet.

We did get a chance to skype a couple of times and she was able to video chat with some of the people at the conference and Whitney was very bubbly during the chat.

Whitney is scheduled to do her third bone marrow biopsy on Monday and we should get the results on Tuesday whether or not she is in remission, or if she will have to undergo more treatments before we start the transplant process.

I can't say enough good things about the people at Nelson's Landing. Kim Nelson and her crew  have went above and beyond in showing their support for Whitney and us through this entire ordeal and especially during the Team Whitney Weekend. This whole experience really makes me think about why I need to try harder to support local businesses who have a vested interest in my community.

Whitney was surprised when Representative Gonzales stopped by to see her. I have worked with Ramon for many years and we have built a very good relationship over that time. Of course Whitney quickly made friends with him too and he calls her his little honey and she just beams with pride when he says it. I knew he was sending her a letter from an earlier conversation, but I was surprised as she was to hear that he was visiting her, I'm glad he took the time out of his busy schedule to see her and take a short walk with her.

I am working on a another series of stories about Whitney and I should have one finished tomorrow, so stay tuned.

Here are some pictures that were sent to me this week.

Sunday, April 20, 2014

Against All Odds

Whitney's entry into this world was a struggle, but she had a tremendous will to live and a handful of people who wouldn't give up on her.

The basic facts of Whitney's birth are that Lisa had a normal pregnancy with Whitney up until it was time to deliver Whitney. A Pitocin drip had been established in Lisa to induce labor. Lisa was in labor for a total 39 hours. The decision was finally made to perform a Caesarean Section delivery and the Pitocin was stopped. Sometime before the doctors actually started the C-Section procedure, the Pitocin was somehow turned back on. Lisa then had some very long contractions that wedged Whitney into Lisa's pelvis. Whitney's pulse rate dropped and an emergency C-Section was performed. Whitney entered into cardiac arrest soon after delivery.

Doctors refused to give up on Whitney as they performed CPR on her lifeless body for 25 minutes. Whitney's will to live took over and a heartbeat was found. Whitney survived her first test, but more were yet to come as many of her organs were not functioning properly and the doctors weren't confident she would make it through the night. Whitney was taken to NICU, placed on a ventilator and given her last rites.

Here is Whitney at 6 days old:

Whitney survived her first two weeks in the hospital, but the initial prognosis was dim. Whitney was diagnosed as having Cerebral Palsy caused by Cerebral Hypoxia. Doctors told Lisa that Whitney would never talk, walk or even hold her head up and that she would most likely be confined to a wheelchair.

Against all odds, Whitney was taking her first steps by the age of 3 and she continued to fight hard to be the young lady we all know and love today. I have no doubt that she will win this battle against leukemia, Whitney is a proven winner even when the deck was stacked against her.

Saturday, April 19, 2014

Week Three

Whitney is finishing her 3rd week of treatment for leukemia. She has shown a steady gradual improvement over the bottoming out that she experienced last week. She managed to stay vomit free yesterday and for most of the day today. The only episode today was a short bout that didn't produce much volume. Given her current rate of improvement, she might just be able to make it out of here next weekend and make it to the KSFFA dinner. She just might also be able to make an appearance at the Team Whitney Weekend event at Nelson's Landing too.

The neurological issue is still present and we are searching for a solution, but what we are being told is the condition should gradually return back to normal once she is able to get away from so many medications. We are hopeful that this will hold true as a solution is not readily available to us as of now.

On the financial front, I submitted the paperwork to the state to get her determined as a permanently disabled dependent which will allow her to stay on my health insurance indefinitely. I received word back that it was approved and she will stay on my policy past her birthday, good news indeed and a huge weight lifted from our shoulders.

This was the first week in which I was gone the whole work week. I was rough not being together as a family, but Riley County has been more than generous and I need to be responsible and fulfill my obligations to the County as much as possible.

Overall, it has been a great week given the situation we are in. I am currently working on a few more stories, so stay tuned for future entries.

I would like to thank Sister Sarah for the help this week and a shout out goes to all of the people who took the time to visit Whitney this week and brighten her day a little. Be sure to follow the Team Whitney facebook page for more frequent updates.

Here are a few pictures from this week:

Sunday, April 13, 2014

Two Weeks With Leukemia

Just a quick recap of events leading up to where we are now. We were all sick with a cold the last couple weeks of March, Lisa and I got better and Whitney didn't. She got to where she didn't want to do much and was complaining of abdominal pain. Lisa decided to take her to our primary doctor in Lawrence on Friday March 28th. Our doctor performed an exam and did a blood test. He didn't like the white blood cell count and told Lisa to take Whitney to the emergency room at LMH. Whitney was diagnosed with having leukemia at LMH and Whitney was transferred via ambulance to the University of Kansas Hospital.

Through testing at KU Med, Whitney was further diagnosed with Acute Myeloid Leukemia (AML) and was also found to have a FLT3 gene mutation. Current treatment practice for this specific condition calls for an aggressive chemotherapy treatment to get the cancer into remission and then perform a bone marrow transplant during first remission. Overall 5 year survivability rates with this treatment path is about 50%. If the transplant is not performed during the first remission the survivability rate drops to about 20%.  I do feel that the survivability rates are a little misleading in Whitney's case as the common demographics for this diagnosis is a 60 year old male. After discussion with the doctor we feel that we are looking at about an 85% for Whitney. This isn't something that I have really discussed publicly before as it is a little touchy, but I think it is important to understand as we move forward.

This is why I have been pushing information on bone marrow donation as it truly is the difference between life and death in these cases. I hope that by me sharing this information as I learn about it will help educate all of us on the subject. I know I will be more active with this cause in the future as I have learned the importance of it.

This sets the stage for some discussion that I need to vent about and also try to wrap my head around. As is the case with most medical treatments of this nature, there is very little talk about money up front on any procedure that is performed. You walk into this environment with an open checkbook, how do you put a price on the life of a loved one? Through side conversations with staff I am under the impression that most people are way under insured and underfunded for the treatment of this type illness. I think that most of the primary treatment path is developed and ran with this in mind.

What I am struggling with here is we were trying to get the transplant process started as soon as possible and we couldn't get any straight answers on matches, or even get a rough game plan on what we were doing. As we were discussing this there was a comment made that if we understood that this was a very expensive process. We answered that we have good insurance that should cover it and then we learned that the hospital showed that insurance was denied. Long story short, the hospital made a couple of clerical errors entering information. Once that issue was resolved we learned later in the day that they had found 5 matches for Whitney and that they would initiate the harvesting process on 4 of the donors. Great news for sure, but it was a close call. If we didn't have a good insurance policy I'm not sure we would have been so lucky.

Just to give everyone an idea of what we are talking about here, the transplant process is estimated to be around $800,000 This will be on top of the initial treatment to get her into remission which I am guessing will be close to $400,000. With our insurance covering a vast majority of the bill we are guessing that we are looking at $10,000 that will be our share. Getting cost on this stuff is a nightmare, as I don't think anyone has a clue. I do know that some of the initial bills from LMH have come through and they were around $6,000 and they didn't treat her there, just diagnosed and transferred.

We are also looking at treatments from the transplant lasting until August or so. Thus we are talking about renting an apartment in KC for that process which will increase our cost and of course the travel cost and such. To further complicate issues, Whitney is due to come off of my insurance policy on her 26th birthday. This will happen in June right in middle of the transplant recovery. We have a few options that we are working on to address this, but that is something that I had to work on this week.

Well, enough of the business side of Whitney's Journey. Whitney is starting to show small signs of recovery and entering remission. Her vomiting is getting less frequent, her white blood count has stopped dropping and she is in general better spirits. She still has a long ways to go before she is back to her old self, but each day gets a little better. She is getting where she can start seeing people again, as long as you aren't sick or in contact with someone who is sick. Still no children and the same rules still apply on foodstuff and flowers.

Here are a couple of pictures from Saturday.

Thursday, April 10, 2014

Whitney's Update 10APR2014

I am backing off from doing daily updates as I am trying to figure out how to get back to work and balance our lives. I am currently thinking of long post updates a couple of times a week with smaller fill ins on the Team Whitney facebook page. Lisa will be able to update the facebook page and I will still handle the blog as I am traveling from place to place.

Later today I will be meeting with by boss Pat to try and figure out a work schedule that makes sense for everyone involved. Riley County has been very good to me and I want to make sure that I am doing right by them. Lisa will be going back to KU Med today and I will be staying in Leonardville and will be traveling back and forth as my schedule allows.

Enough about that nonsense, lets get to why you came here and that is to find out how Whitney is doing. From what we can tell by her white blood cell counts, she has bottomed out on the chemo treatment and is starting to recover from that. Her nausea is subsiding and she is staying awake a little longer now. We were elated to learn that she was cancer free in her spinal canal. The game plan form here is pretty clear. First step is remission next is finding a donor.

Mail has been coming at a steady pace and she about has her window covered with cards. She is listening to us read to her, but she still doesn't have the energy to read the cards or read the facebook posts on her own yet. She doesn't even want to watch movies right now, we get a little ways into them and she wants to shut them off so she can sleep.

Bonnie came by for another visit. Whitney was looking forward to that and she said all day long that she wanted to take a walk with Bonnie. Whitney is weak enough now that she has a hard time just standing and shuffling around the room. She did make it to the wheel chair though and we took a walk around the 4th floor of the hospital.

All in all it has been a good couple of days. I probably won't write again until sometime Sunday, so keep an eye on the facebook page for updates.

Oops, I almost forgot, we are getting very close on getting the t-shirt deal ready to go. The design is being finalized, the printer is lined up and ready to go. I hope to have an order form on this site in the next couple of days once we figure out the logistics of handling the shirts. Stay tuned, we will push out info on here and the facebook page when we are ready to go.

Tuesday, April 8, 2014

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.

Monday, April 7, 2014

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.

Sunday, April 6, 2014

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: