Whitney's Legacy

Miss Whitney lost her fight with Leukemia on September 22nd, 2014.

We knew when the cancer came back so quickly after the transplant that we were in trouble. The treatment path we chose was what we thought gave her the best chance to beat it, but her poor battered body couldn't handle the treatment and her liver failed. It has been 2 months since she left us and I still cry as I try to write this. Things turned so quickly and our world was so chaotic that I didn't write any blog entries since her relapse.

I turn back to this blog as our plans for her legacy come together. We knew right away that we needed to honor her love for the University of Kansas Women's Basketball program, so we sat down with them and decided that the best way to honor Whitney and help the team was to endow a Women's Basketball scholarship in Whitney's name.

When scholarships like these are endowed, the "seed" money for the scholarship is raised at a level that allows for the annual interest to pay for the scholarship. This will allow Whitney's story to be re-visited every year when it is awarded to one of the basketball players.

Whitney won't be able to out live us herself, but with your help, her memory will.

We are doing good job of raising money for this, but we still have a ways to go. I am asking for your help to keep Whitney's story alive. Donations are tax deductible and even the smallest amount helps.

Send donations in honor of the Whitney Van Dyke Live Life To The Fullest And Fight Harder Scholarship benefiting Kansas Women's Basketball to KU Endowment, P.O. Box 928, Lawrence, KS 66044 or give online at www.kuendowment.org/givenow. Be sure to put Whitney Van Dyke Live Life To The Fullest And Fight Harder Scholarship in the benefit box of the form.

Donations are eligible for Williams Fund credit if requested.

Whitney Relapsed

Whitney started feeling a little "weird" last Monday, August the18th. She told Lisa that it felt like the cancer was back. She showed signs of CDF and the doctors started treating that. By Thursday her blood counts were a little off and the doctors ordered a bone marrow biopsy. The biopsy came back full of cancer cells that were just starting to make it to her blood stream.

We met with the doctor on Monday the 25th to figure out what to do. He said that given how strong and fast this cancer is coming back, we were in trouble here. We decided to try a drug newly approved for chemotherapy that shows some promise on FLT3 positive patients. We are looking at a 20% chance that we can get her back into remission. Our only other real option was to go back in patient with the same type of heavy chemotherapy that we started off with. We are looking at about a 20% chance she would make it through the chemotherapy, much less get into remission.

Given the overwhelming bad odds we are dealing with here we really want to be sure that Whitney could try to do some of what she wanted to through this process. We discussed time frames and windows of opportunities. We decided that we were not going to put her back into the hospital and try this newly approved treatment. Current plans are for two 28 day cycles and re-evaluate. No promises and no guarantee of a cure. We are going to try and get her home often and get her to the basketball games as we can.

Live each day to it's fullest, tomorrow is not a given.

Transplant Time

Whitney will be starting the transplant process this Saturday morning with an outpatient chemotherapy treatment.  Prior to receiving the donor's blood stem cells, the doctors must destroy Whitney's immune system so that it doesn't attack the new stem cells. This will be accomplished by another round of chemotherapy along with whole body radiation treatment called Total Body Irradiation (TBI). The TBI treatment must be within 24 hours of the actual transplant, so timing is critical. The actual day of transplant is Wednesday the 18th and the TBI is scheduled for the morning of the 18th with the transplant expected to take place on the evening of the 18th.

We had been under the impression that this was going to be an inpatient process for the first 30 days and then transition to an outpatient process for the next 70 days. After some discussion, the treatment team decided that the best option would be to try a less aggressive process to destroy her immune system due to her secondary issues. This puts us in a completely outpatient process for all 100 days. We weren't ready to get a place to stay in the city yet and this last minute decision has left us scrambling for accommodations. We have options and will deal with this just fine, we just weren't ready for it and that irritated me.

We will have to be very selective about Whitney's exposures during this process and this is the primary reason why we want to get a private apartment. We will also be limiting visitors during the initial phases of the process to help avoid as many exposures as possible while she is in a compromised state.

I am also working on a recap of Whitney's "vacation" and I might get it done tomorrow night if everything works out.

~Doug

Taking a break

Whitney will get to come home later today for a welcomed break in her treatment process. We know at this point that she will get to spend the memorial day weekend at home with us. She is schedule to go back Tuesday, as an out-patient, to get her next bone marrow biopsy and the sinus polyp removed.

Where we are in the big picture of things is we are just finishing up what they call the induction therapy part of the treatment path. The goal of induction therapy is a complete remission of the cancer. We don't expect to get the results of the biopsy until Wednesday to know if the cancer is in remission or not. Either way she should get a couple week break before her next options are initiated.

If the cancer is still present in Whitney after these two rounds of chemotherapy, the disease is then classified as what they call refractory AML. At this point we will probably have to do much more consultation and seek a second opinion from another hospital. Not a path we want to venture down.

Hopefully the cancer will be declared in remission and we initiate the transplant process.Here is a brief explanation of that process from cancer.net:

During a stem cell transplant, diseased bone marrow (the spongy, fatty tissue found inside larger bones) is destroyed with chemotherapy and/or radiation therapy and then replaced with highly specialized stem cells that develop into healthy bone marrow. Although this procedure used to be referred to as a bone marrow transplant, today it is more commonly called a stem cell transplant because it is stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

We are expecting the transplant phase to be around 100 days total with about 30 days of in-patient treatment and 70 days of out-patient treatment.

Changing the subject a little, the neurology team has diagnosed Whitney with an additional disorder called Dystonia. The definition of Dystonia from the National Institute of Health is:

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known. 

This would be what Whitney is referring to as her shakiness. It is the twitching that people have seen when they visited. This disorder would be in addition to her Cerebral Palsy that is causing the posturing or the rigidness. Reading through the material on this, I think this has been an underlying issue that Whitney manages to keep suppressed when she is completely healthy. The biggest concern at this point is if the chemotherapy has made it worse, or if it is just fatigue. The answer to that question will come with time.

I will sign off for now as I must get the castle ready for the arrival of the princess arrival later today. I will provide updates on the facebook page as things progress today.

#TeamWhitney because #NoOneFightsAlone

~Doug

Weeks 6 and 7

The last couple of weeks have been pretty much a blur. I had to create a new Google calender to keep track of Whitney's Journey. I kind of eluded to this in the last post, but I am back at work and Lisa is staying with Whitney most of the time now. Lisa and I are talking on the phone quite a few times during the day, but it is hard for us as a family. We have always tried to do everything together, whether it was firefighting, 4H, or other activities. We are managing and keeping it together, we really don't have many options at this point.

I would be remiss if I didn't give a big shout out to the 911 crew at Jefferson County. They went above and beyond making all kinds of goodies and washing cars when the weather wasn't the best. The Snyder's brought up the money that was raised at the car wash and bake sale. The first thing that Whitney said was that now she could upgrade her KU Women's Basketball seats to courtside. I am not sure that is the best use for the money at this point, but if it gives her the drive to beat the cancer I am all for it. I am humbled and deeply moved by the love shown for Whitney by not only the 911 dispatchers, but the other responders and citizens of Jefferson County too. My hats off to you all!!!

Speaking of money, the bills are slowly starting to trickle in now and all I can say is wow. My best advise to anyone reading this is to make sure you have some type of health insurance for catastrophic illness if nothing else. The bill from March 28 to April 26 for the room is $268,379.21. Mind blowing, but it is pretty legitimate when you look at everything going on and how many people it takes to do it. What I have as of now the first month bills are just under $300,000. We haven't hit the max out of pocket yet, but we are finding that it doesn't include items that the insurance company doesn't cover by policy. Quite a few little gray areas in billing and we are having to look at things pretty close.

Whitney's condition seems to be better now than after the first round of chemotherapy. We can only hope this means that it has gotten most of the cancer cells. Last round, she was never able to get away from a constant IV drip. This time she is able to get off during the day and they are putting it back on during the night to ensure she stays hydrated. I'm not sure if I have posted this before, but she does have a polyp that is showing up around her sinuses. It has been present since she was admitted and we have assumed that it was part of the sinus infection that she was fighting before we came in. It sounds like they are wanting to go ahead and do a biopsy on it tomorrow. Hopefully we will know more then and it is relatively good news.

That's about all I can think of right now. Most days my brain isn't functioning at full speed either. Until next time,
Doug

#TeamWhitney
#TeamWhitbeth
#NOFA

Week Five

I am writing this a little later than I intended to. I think we are starting to truly feel the effects of this as a family. Our lives are centered around the fact that Whitney is battling for her life right now, but that doesn't mean that everything outside of our world stops. The show must go on. Lisa and I are getting pulled in different directions and we are trying to keep it all together. We are all strong and we will pull through this.

Speaking of this, it was actually two of Whitney's friends that came up with the idea of Team Whitney. Beth and Breezy asked if it would be alright to set up a facebook page and get some shirts made. We were all fine with the idea. The more I thought about it the more I liked it. It takes a team to get through something like this. I also saw the slogan somewhere that no one fights alone and I thought to myself that was perfect, it explains it so well. Team Whitney because No One Fights Alone, hence her tagline was born: #TeamWhitney because #NoOneFightsAlone

That brings us to week 5. I gave an earlier update when we found out that Whitney's cancer count was still way too high to do the transplant and that she would need to do another round of intense chemotherapy. To try and explain the treatment that Whitney is on, it is basically one drug on a 24 hour drip for 4 days straight and a second drug once a day for 3 days. Together these drugs target quickly devolving cells such as blood stem cells. Primary side effects are intense vomiting and diarrhea. The treatment completely wiped her out this week, she didn't want to do much at all. The best news is she made it through. Everyday should get just a little better and we should see some improvement by this weekend.

Whitney did have a few visitors this week, but I have been very hesitant to list everyone for the last few weeks for fear of missing someone. I haven't been able to be there most of the time lately as the show must go on and I must keep everything going. Lisa's sister and parents have helped out and and are staying at the hospital with Whitney on occasion so Lisa can get a break every once in a while.

As always, more to come later. Here are a few pictures from this week.

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.

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.

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.

 

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.

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:

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.

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.