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.