Beyond the Updates

Well, Audrey was not released from the hospital on Sunday as expected. Her blood counts were not where our doctor wanted them so she was not released. She had a great night and I do feel like we will be breaking free today. (Blood counts still not high enough and more vomiting this morning, will be here at least one more day).

I know that the updates lack flare and excitement so I am going to post pictures today as promised long ago. Also, I thought I would include some hospital fun Audrey and I have had.

Audrey likes to request things she knows our unit has in the refrigerator so that she can leave the room to retrieve the items. She asked for some ice cream (which she doesn't seem to like but keeps asking for). We picked out the ice cream she wanted, came back to the room and she took a bite. Immediately she handed it back to me and declared, "disgusting."

One of the things Audrey likes to do to keep herself busy in the room is watch Bolt the DVD. She often watches on her portable DVD player. Some of the DVDs are skipping and the player isn't in the best condition with her continuously touching it. So, I was getting after her about touching it and I told her I would take it away if she wouldn't keep her hands off from it. She shot me a dirty look out the corner of her eye and stated, "I am not talking to you anymore."

Every time our nurses come in to check her vitals she insists she gets a turn too. We have some wonderful nurses here because they all play along with her. She listens to her own heart and lungs, checks her temperature with the ear thermometer, they even gave her an adult blood pressure cuff so that she could check my blood pressure when she wants. Uncle Chad and Aunt Sarah already bought her a Dr.s set for Christmas!

This morning she needed to have a washcloth bath and decided that she was not going to put pajamas back on. Instead she is wrapped up under the covers with nothing but a diaper on! It is important for her to feel she is making some decisions here so if this keeps her happy she can be naked the rest of the time we are here! There are so many other things she doesn't have a choice in.

Night at the Hospital

(This is Ryan) Audrey and I stayed at the hospital through the night. She spiked a fever several times during the afternoon and her heart rate was up to as high as 170 at times (normal is 120 to 140). The heart rate and the fever go hand in hand. However, by 8:00 she was feeling well and was able to keep her dinner down.

She slept all night and woke up this morning in great spirits. She immediately wanted powdered sugar donuts (which of course we have in vast supply at all times, cause sometimes that's all she wants) and I was able to get her to drink some juice also, none of which stayed down. We'll have to see how the morning goes! Fortunately, Bolt the DVD has infinite life.

Unexpected Hospitalization

Audrey had an appointment today for blood work. Due to the fact that it is the day after Thanksgiving the children's clinic was closed so we had our appointment scheduled at the hospital. I woke Audrey up around 8:00 a.m. to get her ready by putting her numbing cream on. I noticed that her temperature was elevated but thought it might go down after being awake and drinking for a few minutes. She began throwing up shortly after. Upon arriving to the hospital I knew we were going to at least be hooked up to an IV to battle against dehydration.

Audrey is now admitted for the next 48 hours while she is monitored for temperature, heart rate, oxygen and re-hydration.

We are so grateful for the wonderful medical care that she is receiving. We have every confidence in our team of doctors. While it isn't fun to have her admitted to the hospital we are grateful to know she is being taken such good care of.

Homecoming #1

Audrey and Ryan arrived home from the hospital on Sunday the 22nd around 11:30 p.m. Ryan ended up sleeping in the twin bed in Audrey's room and she transferred from her crib to the twin bed with him from 3:00 a.m. until around 6:30 a.m.

She has been experiencing severe mood swings. At one point she would just cry and tell you she was not okay but would not talk or tell us what was wrong. She has been angry, particularly with me. Today I took her into the children's clinic to have blood drawn. While we were there she was found to be severely dehydrated. We stayed in a bedroom there for a couple of hours while she was hooked to an IV. Dr. Beaty came in to see if he could get a picture to put in her chart and asked her to smile. She gave a very serious scowl. He snapped the picture anyway and showed it to her. She thought she was really funny and started to laugh. Just then he snapped another picture and was able to capture the happy Audrey he was hoping to get!

The dehydration is a major reason for her severe mood swings. We are trying our best - short of sitting on her chest and forcing food and liquid down her throat.

Week 0 Day 3

Audrey received the last of her chemo for this treatment. She has been vomiting in the night. She has been given medicine for nausea and when that doesn't quite cut it they give her benedryl. She is doing well this morning, talking like crazy! She kind of caught on that I wasn't exactly listening to her after hours of talking. So she touched my face, turned it toward her and said, "I said a question." I have been trying to make more of an effort to figure out if she is asking a question so I can respond.

On Week 0 Day 2 (Friday night) Audrey wanted Ryan to stay the night with her. He was here most of the day as well. Nathan and I had a slumber party in my room (I put a pillow in between us so that he wouldn't touch me when we were sleeping). Two sisters from my ward came over to help do some deep cleaning - thank you Nancy and Annette - and afterward I told Nathan that I would take him anywhere he wanted for lunch. I expected McDonald's and sort of resigned my self to that outcome. Nathan surprised me, he asked for Olive Garden; yes, I think my expensive tastes are rubbing off on him. Later we went to the Asheville Mall and it was nearly impossible to find a parking spot, apparently the recession does not exist here. Then we came to the hospital to trade off. Ryan took Nathan home and I stayed the night with Audrey.

While Audrey had Ryan in the hospital she took total advantage...because of the unit we are on with pediatric oncology there is a playroom just down the hall; well, Audrey and Ryan visited the playroom at least three times, took walks up and down the hall, she would have him start a movie and five minutes into the movie would decide she wants another one. Yup, little girl has daddy wrapped around her finger! I don't even let her choose the movies anymore and won't change them for her until they are finished.

Oh, one funny little story about yesterday: Nathan and I were in the men's department at Belk, looking for a Christmas tie for Uncle Justin (who is serving his mission in Idaho). Nathan wanted to hide under the tables so I was getting after him and he said, "I should have never been a kid." I questioned him as to what he meant by that. He said, "I should have been a wild animal so nobody can yell at me." It broke my heart and I gave him a hug and explained that it is scary when he hides because I don't know where he is. Today it is really funny though. What a mind, he knows that parents get after children and wild animals are free from all of that!

We should be going home first thing tomorrow morning! Grandma Karen is on the airplane as I am posting this entry!

Week 0 Day 1

Audrey and I arrived at the hospital around noon - after a trip to Audrey's favorite, McDonalds. Because this is our first time and due to the fact that she had her port placed on Monday of this week, I was not sure where I should numb her skin for the port access. So, after we arrived they showed me how to access her port or where I should put the numbing cream. This saves about two hours if I do it ahead of time. Then the next couple of hours is spent hydrating her body through an IV. The first time a patient receives chemotherapy the pharmacy takes quite awhile to put the correct concoction of drugs together and send them up to our floor. Audrey fell asleep around 9:00 p.m. and the chemo started around 10:15 p.m. first she receives some medicine through her port to help with nausea (a very common side effect of her chemo) then they have two IV bags with the chemo drugs the dripping process takes about an hour when that is finished the process repeats two more times.

At first I was a little irritated that the process wasn't starting until she was asleep, thinking it would keep her up all night. However, it seemed to work in our favor. She was so tired that she didn't wake much of the time the bags were being changed and the medicine was being put through her leads. It was definitely hard on me waking up every hour on the hour but I seem to have gleaned enough sleep. Regardless of the person changing her diapers gloves have to be worn. Audrey really doesn't like this and the first couple of times it really scared her. Now she knows that we have to and she has decided it is okay if I am the one doing it and not "the lady" aka our nurse.

She was very groggy when she woke up this morning and actually said that she didn't feel good. But she is wide awake and very conscious of everything going on around her. I asked her if she feels okay and she responded, "not yet." So I questioned when she might feel better and she replied, "Five thirty." Not sure what that means but we both smiled and laughed - it felt good! She had a little bit to eat and drink this morning and she has applied her chapstick at least ten times.

I know that this blog entry is getting really long (and what fun are blogs without pictures - I will be posing some soon, I promise). I just feel like I need to share a personal experience from years ago...

My Grandma Hiatt (whom Audrey shares a middle name with) is one of the most special, important people in my life. Though she did not live a very long life she had more than her share of trials and experiences. We were as close as a grandmother and granddaughter could be. See, while she was living she had 10 of her 11 grandchildren and she was so good at being a grandma, each of her grandchildren thought they were her favorite. I think that is the secret of a great grandma, loving and treating each grandchild as if they are the most important person in the world. As I said she had many experiences and trials, most of which had to do with health issues. She survived multiple heart attacks, heart disease, breast cancer and the removal of both breasts, she had severe diabetes which eventually led to the removal of her right leg, above her knee. I spent the night at Grandma's house a lot growing up. She lived within walking distance of my house most of the time I was growing up. I remember some nights (in the years prior to her leg amputation) praying that Heavenly Father would take her pain away for the night and let me have the pain so she wouldn't have to experience it. Those nights I actually thought I felt like I was taking on her pain. I later learned that some people actually experience pains like this, mostly psychological, and they are called sympathy pains. I do not know if Grandma experienced less pain on those nights but it made me feel better experiencing some of the pain. Last night I found myself praying that same childhood prayer that Heavenly Father would allow me to experience all of the pain and discomfort in Audrey's place. The hardest part about all of this is seeing someone you love with all of your heart going through the trials and pains and not being able to do anything about it.

Week 0

Audrey's chemotherapy will begin on Thursday, November 19th. She will have medicine on Thursday, Friday and Saturday. On Sunday she will receive a shot that helps with her white blood count. This is considered Week 0. This is the schedule as far as we know it - Week 0, 4 days in the hospital; Week 3, 3-4 days in the hospital; Week 6, 3 days in the hospital. Week 7 chemo treatment for 1 day outpatient from the clinic; Week 8 chemo treatment for 1 day from the clinic - After this I assume they will be doing another MRI and other tests to see how the chemotherapy is managing the cancer cells.

I am hoping Ryan will be able to figure out how to get Internet access for me in the hospital and I will let everyone know how she is doing with the treatment.

Week of November 16th

We are back from surgery today. Audrey had her port surgically implanted so she can more easily receive the chemotherapy treatments when they begin. We believe chemo will begin this Friday.

She is now in good spirits (after she ate the ice cream sandwich she first declared she wanted at 10:00 a.m.). it took awhile to get to the good spirits as she was very tired and grouchy. Being at home makes her very happy though!

Latest

Most of the information is still the same. I requested some scheduling changes and they have been able to accommodate. On Monday, November 16th Audrey is scheduled to have her port surgically implanted. This is where she will receive her chemo treatments and blood can be drawn, etc. This is a learning process for us as we recently learned that for the first couple treatments she will have to stay in the hospital at least over night. Because of this knowledge and the fact that we as a family are dealing with all of the changes - Nathan is especially having a hard time and even had a breakdown at school earlier this week - we are requesting that the chemo treatments start Friday, November 20th. This way Ryan will be home with Nathan. Dr. Beaty indicated that if the finally pathology comes back indicating an urgency we will have to begin chemotherapy before Friday.

This weekend Steve, Rosie and the kids will be coming to spend a weekend with us before Audrey's treatments start. Because we will not be able to travel for some time (meaning my first Christmas in my 28 years I will not be in MI for Christmas) we will be celebrating Christmas with the cousins this weekend.

One day a few weeks ago I was talking and crying with my mom and semi-out of nowhere she said, "You know, I think next year is going to be a great year for our family." That is a lot of what I have been focusing on lately - next year is going to be great! Thanks Mom!

The Plan

We had our meeting with Dr. Beaty last Friday. We now have a schedule of medical procedures that will occur Monday, Tuesday and Wednesday. On Monday she is having an MRI of the original tumor spot so they can use that as a baseline to compare after chemo treatments. On Tuesday she is having CAT scan of her torso and a bone scan. On Wednesday she will have a surgery to implant the port where she will receive her chemotherapy treatments. This is really important because she will not have to be poked each time she receives the treatment - it is also very important for her veins.

Dr. Beaty has talked to a Doctor from Washington D.C. that currently has two patients (6 months and three years) in a similar situation as Audrey. He has been treating the patients with lower doses of chemotherapy (than was previously used) with better results. The medicines cause toxins at such high levels in the patients' bodies that often the treatments were causing the patient to become very sick. With the new treatment of lower doses of chemo the toxins are reduced and the patients are much healthier.

We will be going to Jacksonville, Florida for radiation on the original tumor spot. This will most likely happen in January or February. We do not know much about the radiation except that this specific machine is only found in two places in the country so the doctors that run the programs are experts.

Providing Audrey is in good health and gets over her viral annoyance that she currently has she will most likely begin Chemotherapy on Monday, November 16th. The chemo treatment plan is a 30 week schedule. Dr. Beaty was quick to add that though the plan is for 30 weeks we should plan for much longer (9 months to one year) as if she isn't perfectly where she needs to be on her blood counts, ect. they cannot administer the chemotherapy.

More Information

We spoke with Audrey's pediatric oncologist, Dr. Beaty, as the first part of pathology has come back. We know that there is a possibility of two things that Audrey has - epithelioid sarcoma or it is classified as a rhabdoid tumor (specific type of rhabdoid will be determined with continued pathology). The epitheliod generally occurs in teens and shows up in their extremities. The rhabdoid is considered to be a pediatric cancer generally showing up between the ages of 2 and 13. The doctors here have felt like it is rhabdoid from the beginning - as this would be the age for it to show up and the tumor was embedded in muscle which is another characteristic. The very unique thing about this is that the rhabdoid generally attacks the CNS (central nervous system/brain) and/or the kidneys. We have had an ultrasound of the kidneys and an MRI of her brain and both are clear. Perhaps this is why pathology is taking quite awhile to come back.

Much of the information that can be found on the Internet regarding rhabdoid tumors is old information, published in the late 90s - and speaking medically the information is practically ancient. Because the information is old and most of the articles cite children that are discovered to have this after it has entered the brain the mortality rates are very high. Audrey's situation is unique - perhaps the only child that has had a tumor to appear somewhere before it entered the CNS or kidneys. The tumor may very well be the thing that saves her life.

We are still waiting to have an official meeting with Dr. Beaty to discuss our plan of action but we do know that it will include chemotherapy. The length of time she will be on chemo is unknown, the exact concoction of medicines used in chemo is unknown and though we believe it is in the rhabdoid family we do not have it narrowed down to the specific type and we are waiting for the cancer to be staged - which will indicate how concentrated the medical professionals believe it is.

As we get more information we will post it to our blog as I simply do not have the time or energy to call everyone with a personal update. Be sure to become a "follower" of our blog and post your comments and questions.

On a personal non-informative note: I feel like this is the calm before the storm. Audrey is spunky, sassy, full of life and a regular two-year-old. She has been running, playing, talking, processing, attending birthday parties, helping with the girls I watch and enjoying life. Once the chemotherapy starts our lives will turn upside down. Though we do not know exactly how Audrey will respond to the treatment - we have a fairly good idea. There are going to be emotional ups and downs. We have been told it is best for Audrey not to attend church the entire time she is getting the treatment. I will no longer be able to care for Bella and Sophia. People will only be able to come over when they are completely healthy. I am going to have to ask and depend on others to assist with things I simply cannot do on my own.

Thanks to all of you for your prayers, fasting, love and support. I am so grateful to have all of you as my support system.

Audrey Update

It is official Audrey has cancer. The tumor was removed from her back on Wednesday, October 28th. We had an appointment on the 30th to find out what the specific type of cancer is. Unfortunately the pathology is taking longer to get back than even the doctors anticipated. We have a pediatric oncologist, Dr. Beaty, taking care of us from this point.

We were able to have a happy, normal Halloween. Audrey dressed as a flower (like last year) and this year Nathan was a T-Rex! Pictures will follow in a few days.

On Monday we took Audrey to another round of testing. This time we specifically looked at her kidneys and brain. One of the kinds of cancer she may have generally affects the brain and/or kidneys - thus the need for the testing. Both of the tests came back indicating that everything is clear and looks good. We are so thankful for that!

During the meeting with Dr. Beaty last Friday he said that if Audrey has one particular type of cancer she will not have to go through chemotherapy. Before the meeting I was under the impression that because she has cancer, regardless of the type, she would need to have chemo as a preventative of it continuing through her system. I know chemo is going to be so difficult on Audrey and our family - watching her go through the treatments. However, I was beginning to prepare for that. Now I have this glimmer of hope that she will not have to have chemo therapy and that is all I can think of. Oh, how I wish he wouldn't have mentioned this and it could have just been a wonderful surprise and blessing if it turns out she has this one type of cancer... We should have pathology back by the end of this week.