Thursday, December 31, 2009

Holidays and Jacksonville

We survived Christmas on our own. I mentioned before that this is the first Christmas that I have not been in Michigan - in my life! It wasn't bad until Christmas Eve when we started thinking about everything that we were missing out on. We always get together with the Lansings over at Ryan's parent's house, have a feast and then watch a movie - a night of enjoying togetherness with family and friends. Christmas morning begins with breakfast over at my brother Chad's house followed by gifts and the afternoon wraps up with cousins and presents. This year was different...not bad just different. We have talked in years past about experiencing Christmas on our own - I think this year, a year without a choice, probably cured me of that desire.

The Sunday after Christmas we decided to brave taking Audrey to church, just for sacrament meeting. It wasn't an emotional experience for me until I saw the excited faces and even some tears. Then, I became emotional. I know that we have people around the country loving us and praying for us and it was so apparent in the faces we saw on Sunday morning. On a side note - Audrey was nuts during church and Nathan was in a mood and burst into tears a couple of time, though it was hectic, it was worth it.

After church we began our drive down to Jacksonville where we had several appointments and had everything set up to do Audrey's proton radiation therapy. This is an intense five week program where Audrey will receive radiation 30 times. We went in thinking that it was a 5 week program, but even if we do it five days a week it will take at least six weeks. We were also told to expect delays due to machinery malfunctions and if her blood counts are not good we will not be able to have treatment. I am really not looking forward to the time in Jacksonville. It is a long time to be away from home, having my family split apart and everything "normal" on pause. I am going to have a very hard time being away from Nathan. We have things set up so he can go to someones house every day from the time he is finished with school until Ryan picks him up after work. Ryan and Nathan are going to travel down on weekends but the drive is over 6 hours and it makes me feel terrible having them travel that distance for such a short period of time we are able to spend together.

Audrey and I are currently in the hospital receiving her third set of Chemotherapy. So far so good. We will be here until sometime on Sunday afternoon/evening. Ryan will be staying with her tomorrow night - it is always a nice break for me. The constant in and out of the medical staff is very taxing.

Friday, December 25, 2009

Thank You

For all of you that responded to my help request and sent my brother a letter, card or a package - Thank You. I had the chance to speak with him today (missionaries are able to call "home" on Christmas - because of the circumstances he was given permission to call our home too). He mentioned that he had received a package, letters and cards.

Merry Christmas!

Christmas Letter

We were able to send our Christmas letter out this year to some but I am sure that not everyone received the letter so I will include it here:

And so our year began as did everyone else’s, with taxes. Tonya ventured out and learned a new skill, preparing taxes for H&R Block. In those few months she learned a lot, met a lot of very interesting people and created some very good friendships while working. Ryan, being a tax attorney, was not left in the dust on this venture – he was consulted on occasion regarding difficult tax returns and often after a little research, he gladly provided the needed answers. By far the most challenging tax return Tonya prepared was our own!


Ryan studied and prepared to take his second bar exam. A few months later the results were in and Ryan is now licensed with the North Carolina State Bar. He continues to work with The Van Winkle Law Firm in Asheville, North Carolina. Ryan’s specific area of practice includes working in wills, trusts and estates. The middle of the year proved to be challenging in that he did not feel as though he had enough work and focused on meeting other professionals in the area in order to stimulate more business. Thankfully work picked up and he has been busy ever since.


At the end of the summer Nathan turned 5 though he wanted and claimed he would be 4 forever! Shortly after his birthday Nathan began kindergarten at Nativity Lutheran. The program fits Nathan very well. He is in a class with 12 other students and has two teachers in his room at all times. The teachers are wonderful, the program and curriculum is impressive and Nathan has really begun to flourish academically.


During this time Tonya was presented with the opportunity to watch a couple of children in our home. Nathan and Audrey were both excited to have the two little girls over and they all got a long so well. Not too long after the girls began coming a lump on Audrey’s back was discovered and within a couple of weeks the babysitting had to end.


The growth on Audrey’s back was a malignant Rhabdoid tumor. This type of cancer is very aggressive and measures were taken quickly to have the mass removed. Over the next several months Audrey will undergo an intense chemotherapy schedule coupled with proton radiation therapy. Nearly all of our family has been here to help and visit since Audrey’s diagnosis.


On the same day Audrey’s mass was discovered we also found out that Tonya is expecting our third child. The baby is due to arrive on June 19th. As one can imagine, our excitement has been postponed as we deal with the reality of Audrey’s cancer and helping Nathan to continue to learn and grow with all of the challenges our family faces at this time.


We know that God lives. He knows and loves each of His children individually. He sent his Son, Jesus Christ, to bear the weight of this world. Christ entered this world as a child, grew, taught, led and took upon himself the sins, sickness, sadness and all that we experience in this world and atoned for each of us. It is through Jesus Christ, our elder brother, that we will have the opportunity to again live with our Father in Heaven. For this we are so grateful and wish to share with you our knowledge and joy this Christmas season.


Ryan and Tonya Beadle


Sunday, December 20, 2009



The biggest snow storm to hit Asheville this decade came with full fury this weekend. We kind of thought that escaping Michigan forever would relieve us of this. We don't even own a snow shovel. We were without electricity for most of the night on Friday night, but it was back on at around 7 in the morning. What a blessing! The house was quite a frosty 55 - 58 degrees by morning.

We have been trapped in the house for two days. We live on a hill and our street will not be plowed for the foreseeable future. Getting down the hill - no problem as long as there are no other cars at the bottom of the hill. Getting back up the hill - I don't know if that would work. The state owns the street and we are very low on the priority list for snow removal. We don't mind, though - we have everything here at home we need right now. Our only worry has been that Audrey would become sick, and fortunately she has not. Her white blood count was nonexistent on Friday, but she has been able to avoid anything bad in the meantime. She had a fever yesterday, but we decided to try Tylenol and it relieved the fever. Fever is the main warning sign for us to beware of this weekend. If the Tylenol hadn't worked, we'd have braved the snow and journeyed to the hospital yesterday. Fortunately, we had a good night.

Nathan was so funny. Tonya took him outside in the morning, intending to let him play in the snow and make a snowman. He said, "Mommy, you can build the snowman by yourself, it's too cold out here." In the afternoon, Ryan took him out again to try and see if he wanted to build a snowman. He decided it was fun and so we built "Frosty" (that's the name he gave the snowman). A few minutes later, "Jack Frost" (Nathan's words for Nathan's decision to kick, hit and destroy Frosty) came along and destroyed Frosty, so Frosty had a pretty short life.

Thursday, December 17, 2009

The Never Ending Cough and Big Girl Beds

Nathan has been afflicted with a terrible cough for no less than two months. He has twice had prescriptions from his pediatrician, has taken a lifetime of cough medicine and we have even tried crazy remedies. It seemed nothing was going to work. Amazingly, last night I do not believe I heard Nathan cough this is the run down of treatments for the day - prescription medication (tablet on the tongue), Robitussin DM, breathing treatment also from pediatrician, Vicks vapor rub on the feet with socks over, humidifier with Vicks in the water - that might be it... And can you believe it, it seemed to work...UNTIL this morning! Maybe it is chronic.

We brought Grandpa Beadle to the airport yesterday after getting Nathan from school. In our ten minute trip home from the airport Audrey fell asleep. I knew she was very tired so I put her in her crib when we arrived home. Well, she woke up during the walk up the steps and she was sure she wasn't going to fall back to sleep. I left her in her crib thinking she would settle down and fall back to sleep. I went down stairs and was in the bathroom washing my hands when I heard a loud clunk on the ceiling above me. I quickly headed up the stairs to find Audrey meeting me on the way down. She wasn't graceful in her decent and claims to have hit her head although I did not see a mark of any kind. So, our life with the crib is over. She went to bed in her twin bed last night. We closed her door thinking we would be able to hear her if she were to wake up in the night. Well, we did hear her...as she was rounding the corner from the upstairs and heading downstairs to the basement looking for "momma" just before midnight!

Monday, December 14, 2009

Homecoming #3

Yesterday morning Audrey awoke while in the hospital and I was telling her that it was Daddy's birthday and he is 30! Our nurse walked in during this conversation, went out to the desk, called Audrey's doctor and put things in motion for us to come home earlier than anticipated. Sure it was just a few hours early but it was wonderful for all of us and I am guessing one of the best birthday presents Daddy has ever received!

Audrey was a little bothered that Ryan's birthday cake wasn't the traditional kind that she is accustomed to. Instead it was a cheesecake from the Cheesecake Factory. There are only two in all of North Carolina (maybe three but they are only in two cities). We have friends that recently moved here from Raleigh and they have family that was willing to transport it here for us! It seriously saved like $15 in shipping! It was the perfect gift, Ryan was so excited.

Today is Ryan's and my 7th anniversary. We couldn't be happier to spend the evening together as a family. We will have many more years to celebrate on our own. I believe this is our most recent picture together, it was taken the summer we moved here to Asheville - 2008.

Saturday, December 12, 2009



On Thursday night, Audrey had a couple of special visitors from the snowy north - uncle Chad and aunt Sarah. They stayed with her for a few hours and as evidenced by this picture, uncle Chad is such a good sport, even allowing Audrey to use his hand as her palette.

Thursday, December 10, 2009

Week 3 day 1

First day of chemo down. We didn't make it without Audrey getting sick though. She is resting now. Today she had a treat though... Uncle Chad and Aunt Sarah are here and they spent a few hours with Audrey so I could go out and attend a Relief Society Christmas party. Audrey left messages for several family members (she loves using the phone). Uncle Chad let Audrey paint his hand. They made play-dough hats and all!


We have definitely had a long day. I hope she can rest well tonight!

Monday, December 7, 2009

Almost Normal

This weekend was wonderful. Friday morning started out very interesting. I walked into the kitchen early in the morning to see that Nathan thought he would make himself breakfast - a/k/a peanut butter sandwich. He was giggling so hard I thought he was going to fall off the chair. The funny thing is that he wouldn't finish his sandwich claiming it was "spicy" (the bread had cracked wheat on the crust). I spent a few hours during the day baking peanut butter kiss cookies with Audrey. On Friday night I was able to spend time with some of my very good friends. Thank you all so much, I really needed it. On Saturday evening we asked Sandy to stay at our house with Audrey while Ryan and I took Nathan on a date. We met up with some friends and had a great time. On Sunday we put up some Christmas decorations and put the kids in their coats so we could go outside and look at our lights. It was wonderful!!

Notice how dark it is outside the window? That is how early Nathan wakes up each morning!

Audrey was unwrapping the kisses to put on top of the cookies and absentmindedly placed one in her mouth! She actually tried to give it back... (This is the first phase hair cut - she is now bald).

We have had our Christmas tree up for over a month decorating for while Steve, Rosie and the kids were here. So I didn't think that I would put up any more decorations, especially lights outside. I decided just to go ahead and do it and guess what, it was a wonderful idea. Putting up the lights was so exciting and brought up so many good memories that I am so happy I went with the idea. Christmas - the whole season - is magical no matter what is going on in your life.

Thursday, December 3, 2009

Help Request

Friends and Family,

I have a request to make... Because of all of the things going on with Audrey right now I have not been able to do many of the things I would otherwise make a priority. So, I would like some help...

My younger brother, Justin Brace, is serving a mission for our church. He is serving in Boise, Idaho. He has been on his mission for nearly a year which means he has just over a year to go before he comes home. I have not been able to write to him nearly as much as I would like. Because it is the Christmas season, and he is probably missing home more around the holidays, I would like it if you would be willing to write him or send him a Christmas card, nothing that will take too long or will cost too much - just something to let him know that he is loved and that what he is doing is important.

Elder Justin M. Brace, Idaho Boise Mission, 1111 South Cole Road, Boise, ID 83709

Wednesday, December 2, 2009

Homecoming #2

Audrey was released from the hospital today. She is on a new antibiotic to help with her viral cough. Nathan has the same nasty cough and our pediatrician is calling in the same prescription (without even demanding to see him!!!). Hopefully we will get past all of the cold season quickly and without any more disruptions.

We will be back in the hospital for the second set of chemo on the 10th of this month. This time Uncle Chad and Aunt Sarah are coming down to help with Nathan.

Monday, November 30, 2009

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.






Saturday, November 28, 2009

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.

Friday, November 27, 2009

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.

Tuesday, November 24, 2009

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.

Sunday, November 22, 2009

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!

Friday, November 20, 2009

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.

Wednesday, November 18, 2009

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.

Monday, November 16, 2009

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!

Thursday, November 12, 2009

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!

Sunday, November 8, 2009

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.

Friday, November 6, 2009

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.

Tuesday, November 3, 2009

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.

Tuesday, October 27, 2009

2:30 a.m.

I woke up in the night to hear Nathan coughing from his bedroom upstairs. His coughs were so hard and intense I thought he was going to be sick. I woke Ryan so he could go to the store and get some cough medicine and I went up to sit with Nathan. He was overjoyed to have company in his room in the middle of the night. It took only a couple of minutes before he was fully awake and fully talkative! We talked for the next twenty minutes while we were waiting on the medicine.

After Ryan returned we gave Nathan his dose of Tylenol Cold and were preparing to leave his room. When we had a very interesting conversation. I had mentioned a dream I had about Audrey wanting to buy property in Florida to build a house (talk about parent's dreams being pushed through the children). Nathan then had a few questions. He asked about living in North Carolina forever and expressed his desire to live here. But then he said if Audrey moves to Florida as a mom I will move wherever she does. Ryan piped up and told her that he could only do that if he is married. To which Nathan replied, "I want to be married in the temple."

Despite the fact that this conversation was at 3 a.m. it was sweet. Nathan loves his sister and wants to be wherever she is. And the fact that he is so young and has the goal and desire to be married in the temple is so wonderful and exactly what we as his parents wanted to hear.

Monday, October 26, 2009

Rewind Please

Photo taken by Ruth Thompson - on her visit from Washington State

On Wednesday, October 21st I was a normal, happy mom working from home and staying home with my babies. Audrey, Bella, Sophia and I were playing in the television room when I noticed an odd bump on Audrey's back. I had felt it the day before while playing in the playroom but dismissed it as her shoulder blade. Upon further inspection I realized that it was certainly some type of abnormal growth. I called Ryan, completely panicked - near tears, not sure what to do. We decided to immediately call our pediatrician's office to set up an appointment.


Thursday morning at 9:30 we arrived to our pediatrician's office where they nearly immediately sent us over to the hospital for a chest x-ray which then turned into an ultrasound and then an MRI. The radiologist said that the mass has "characteristics that are not typically benign." They have ruled out fatty cysts that typically occur in young children. However, what they do see is centralized in one area and it is not in any organs or bone. It is also in a "good" place on her back under her left shoulder blade not in the front of the chest or near lymph nodes where cancerous cells can often spread quickly. While we do not yet know if this growth is cancerous - I don't have much hope that it isn't.


We have spent much time talking, crying, planning and wondering. My heart hurts. I am scared, worried and sometimes lifeless. We are a strong, close family and this is the most difficult thing we have ever been faced with. Audrey received a Priesthood blessing on Sunday. Nathan is still trying to figure out why I cry about Audrey's lump - even though we have explained how scary this is because we don't know anything about it- he is still confused.


I just want a rewind - to be that happy mom playing in the playroom with my children worrying about what to make for dinner tonight.

Back in the Saddle Again

For those of you who have known me for most of my life have known that I have been involved in childcare since I was twelve. After Nathan was born I started a home daycare when we lived in Florida. At one time I had six children - four two year old boys, a baby boy and a three year old girl! After moving from the Gulf Coast of Florida and having Audrey, I decided that I would not be involved childcare anymore. However, upon moving to Asheville I met a wonderful friend, Carrie Harmon. Within the past few months she and her family decided to move away from the area. Carrie had been watching two little girls - Bella and Sofia. Anyway, to make a long story a bit shorter I have begun to watch the girls and they are both such a joy. Sophia 9 Months
Audrey and Bella in the playroom!

Homemade play dough so much fun.

Gymnastics

Audrey has started going to toddler gymnastics. The program is great. Toddlers and parents are given on hour to use all of the gym equipment and play around. The first week Audrey was a natural at the balance beam. She took a few turns on the trampoline and even learned how to do a somersault with some assistance - and learned the technique of placing her hands on the floor and "kissing her belly" to have the correct posture for the flip! We have now been three times. Friday or gymnastic day has been the most anticipated day of the week!


Birthday

Yes, I am now 28 years old. Doesn't feel any different. I don't know why growing older doesn't bother me. This December Ryan will turn 30 and he isn't excited about it at all. I laugh at him because he seems so weird about it. I just keep reminding him that he is in a wonderful place for 30 - married, with two children, finished with his education, at a job that he loves, and of course - making mortgage payments - which means we partially own a home!
Anyway, since my birthday was on a Monday I thought I would make the most of it and have a birthday weekend! Well, I don't know if that really worked out but we did take a ride on the Blue Ridge Parkway. It is so beautiful this time of year. We went to one of the most popular places Graveyard Fields and took a hike to the waterfall. The kids love going on hikes - especially when we allow them to carry sticks so they can "hunt and fish."

Asheville and Rainbows

As we were driving away from Nathan's kindergarten he asked, "Mom, why don't we have a rainbow on our car?"

Monday, October 5, 2009

October

Is anyone else going crazy because it is already October? Didn't school just start? It is amazing how quickly time goes.

Fortunately I am a freak and I already have half of my Christmas shopping complete. Also, we have decided not to get gifts for Nathan and Audrey this year. They have so many things already and our annual trip to Michigan is sort of their "gift." (Not to mention that they have several aunts, uncles and two sets of grandparents that do more than their share in providing for our children!) I have never liked the whole Santa Christmas tradition anyway. I guess part of that has to do with feeling like birthdays are the best days ever - one day set aside to celebrate you. We do our best to be sure that the children's birthdays are the best. As Nathan always insists, birthdays need balloons, presents and cake! For right now all Audrey cares about is CAKE!

Wednesday, September 30, 2009

Family Home Evening

We have been given instruction to hold weekly family home evenings. We are also given promises of increased blessings if we do hold FHE. For the past year we have been fairly diligent in holding our home evenings. It has been a learning and growing process for our family - for instance, we know that after a prayer and song we have five minutes or less to give a lesson (anything longer results in bad attitudes and loud voices!). I can testify that as we do the things we are instructed we can and do receive the increased blessings we have been promised.

In an earlier blog we mentioned that we have been working with Nathan to memorize the Articles of Faith. So far Nathan has the first and second Articles of Faith completely memorized. We introduced him to the third this week. As we were sitting in the living room Audrey started to participate. She looked at her daddy and said, "We believe," long pause "in God [the] Eternal Father," long pause - we all stared at her "and [in] his son Jesus Christ," we all continued to stare, not believing what we were hearing "and in [the] Holy Ghost."

Later we were able to get her on a recording saying the the First Article of Faith. We will be trying to put that on our blog too.

Audrey's Second Birthday





It is official Audrey finally has the age to go along with her attitude! She has been acting 2 for quite some time; now he has every right to!!! All joking aside, Audrey is our prized princess and we love her more every day. Audrey is compassionate, loving and involved we are so blessed to have her in our family.
As is custom we let Audrey choose her birthday dinner. We had pizza, Baked Cheddar and Sour Cream potato chips, fruit and cake - with all of the options she wanted white cake, white frosting and chocolate chips. Her ice cream choice just had be be plain vanilla too. When we sang to her she was embarrassed and had to hide her head. It was a great birthday.

Sunday, September 20, 2009

Home Improvement



This is the most ambitious home improvement project of my life. I found the stud and everything. I am very impressed with myself. - RJB
Ryan forgot to mention that WE found the stud. WE put the bracket together. WE hung it from the wall!

TJ Illness





TJ had a bad experience with one of his paws recently. He wouldn't quit licking and biting at it, so we did the best we could under the circumstances. It was this or the cone around the neck. During a trip to the vet we learned he had an infection and needed some medicine. Fortunately, he stopped wearing the sock shortly thereafter.

School, Festival, Field Trip

Nathan had his first day of Kindergarten on September 1. He loves going to school! The favorite thing he has learned is math and something called "the sensory" (we are still not exactly sure what the heck that is yet, but we know it really does exist). He says the Pledge of Allegiance each day, and eats a ham and cheese sandwich each day (his school prohibits peanut butter in lunches).

Nathan is wonderful with memorization. He has many parts of movies and videos memorized. He often quotes parts of his favorite movies. (Sometimes he skews reality with TV world. Fortunately we have litmited his video and television intake.) We have decided that we should use his memorization skills for building up his knowledge of the Gospel. For family home evening, our family has been working on learning the Articles of Faith. Nathan has the first Article of Faith memorized, and almost has the second one down well also. He loves learning!

Picture and Video:

We attended the Apple Festivle in Hendersonville, NC. You may not be able to tell from the picture but Audrey did not enjoy the ride nearly as much as Nathan did!


video

Nathan had his first field trip. He went to Hickory Nut Gap Farm in Fairview, NC. There he had the chance to feed a goat, was offered to hold a baby chick - he "chickened out", fed a couple of pigs some apples, went through a sunflower and corn maze, etc. It was a fun experience!

Friday, August 21, 2009

Happy Birthday "5"

Nathan's birthday was yesterday, August 20th at 10:15 am. I woke him up early by singing "Happy Birthday". He was tired and sat up in bed. He hung his head and began to pout. I felt a little bad because I did wake him up about a half hour before he usually wakes up on his own. As I questioned him about being upset he indicated that he didn't want to be 5. In fact, he wants to be 4 forever. I let him in on a little secret - okay you are still 4, your birthday isn't until 10:15 a.m. He put on a smile, jumped off the bed and started his day! After balloons, presents and cake he still claims to be 4!

Michigan Trip - August 2009

I must start this entry out by telling all of our friends what an incredible husband and father Ryan is. He knows that it is very important for the kids and I to spend time in Michigan to see our familyso he sacrifices time away from us. Although the time apart is difficult for all of us, it is expecially hard on Ryan - as he is the one left behind. We are all glad to be back together and we are thankful for the time the kids had to spend with their family, espcially their grandparents. We know it never feels like enough time for them....
Lessons from the Road...
If you know one thing about Nathan - you probably know that Nathan LOVES animals. His current obsession centers around extinct animals. Grandma Beadle introduced Nathan to a new word - Roadkill. She went above and beyond giving Nathan a definition...if a picture is worth a thousand words the the real thing is woth at least a thousand questions!


MICHIGAN STATE UNIVERSITY

One of my very favorite things about Michigan is Michigan State University in East Lansing, MI. Ryan and I both attended MSU and received our bachelor degrees from there.
Campus is lovely and holds a certain magical charm for me. We visited the MSU Dairy, fed some Canadian Geese, and visited the famous painted rock.




This rock is actually the size of your fist, it has been painted that many times!




Nathan was tired of the backseat. He navigated traffic like an expert.




The sandbox is always fun - wet or dry!



Pay close attention to three very important fashion tips...




You can only pull off these fashion tips if you are a cute little girl!


Lake Powhatan


A friend of ours told us about a lake near our home that actually has a sandy beach. This was a surprise to us because here in NC the "dirt" is a red clay. We didn't expect that there would be any beaches with sand. The best part...the lake is about five minutes from our house!





At some point I am going to make a post about our favorite places to visit in the Asheville, NC area. This will definitely make it to the list. Not only is there a lake with a swimming area and beach, there are picnic tables, grills and even a campground.

Here is some information I found about Lake Powhatan:

Thirteen man-made lakes and ponds provide added opportunities for water sports and recreation along the Blue Ridge Parkway, and Lake Powhatan, with its multifaceted recreation area, is one of the most popular.

Rather than a primitive wilderness experience, the Lake Powhatan Recreation Area offers easy access to a variety of outdoor activities such as fishing, hiking, swimming, and mountain biking. In addition, connector trails lead to the 6,300-acre Bent Creek Research and Demonstration Forest, The North Carolina Arboretum, and less heavily visited areas in the Pisgah National Forest.

Thursday, August 13, 2009

Around the Country

It has been quite some time since I have posted - not for lack of happenings. We have had visitors from around the country! As I have been reflecting on the wonderful friends I have and where I met each one I have thought about the wonderful blessing it has been in my life to live in many different places. Without the moves I would never have met some of my closest friends.

After moving to North Carolina and purchasing our home we decided to keep a book for our visitors to sign when they stay the night. This idea certainly isn't original - Ryan's grandma Virgina "Ginny" Beadle use to keep a book in her home in Venice, Florida. Her guests would sign it when they would come to stay. Years after she passed away it was interesting to look through the book. So we decided to begin the tradition for our home.

So far we have had visitors from Michigan (obviously there have been lots of visits from our family), Tennessee, Florida and Washington. We are looking forward to expanding our book and would love to have visitors from around the country!

Wednesday, July 29, 2009

Dad Look at Me!


Amelia Hatch - my mentor

Me - delighted the oil was doing exactly what it was suppose to do!Work under the car complete - yup, that is a gob of motor oil in my hair...
Today I learned a new skill.
This experience was wonderful and empowering.
However the opportunity was not without Scare and Mistake...
Scare #1
We can't find the oil pan... (found it behind a trap door - didn't know my vehicle was so mystical)
Scare #2
Are we going to be able to get the nut off?
Mistake #1
Yup, got the nut off, oil is streaming fast out of the pan and we have our drip pan all ready. Oops, forgot to take the plug off the drip pan and the oil is quickly running over...
Mistake #2
Moving over to take the oil filter off and put my head directly in the spilt oil...
Scare #3
Learn that my vehicle is a V6 not a V8 and I totally told the guy at the auto parts store that I needed an oil filter for a V8 (spend the next 15 minutes on the phone with the guy from the auto parts store, explain the whole thing - tell him it is okay to laugh at me - find out that it is okay to have the filter that I did put on).
Scare #4
Looking at the dipstick we can't see any oil at all (luckily I was still on the phone with the guy from the auto parts store and he suggests turning on the vehicle first...yup, worked)
Was it worth it? Absolutely. Will I do it again? Definitely - already setting up a meeting with another friend because she wants to learn too!
Wondering about my hair? Well I have since had two showers, washed my hair three times with shampoo, once with apple cider vinegar and finally resorted to dish soap after leaving it in for no less than 15 minutes. It is much better now, not completely normal yet...