Pigtails!!!

       Hannah's hair is long enough for pigtails! She was so excited to wear her hair like this to my parents' house for Christmas. I realized that she is almost five years old and this was the first time I have ever fixed her hair in any way besides just brushing it. Before she got sick her hair wasn't long enough to put up and it has just now gotten long enough after she lost it last year.
      And as you can see from our count down - only eight more appointments to go!

November and December

(Written December, 20, on the way home from Atlanta)

I haven't written about last month's appointment partly because this past month was my busiest of the whole year and partly because I didn't know what to say without sounding like I was complaining.  I don't want to sound like I'm whining on this blog. I want to be thankful and look at things from a perspective of how good things are compared to how they could be. Cancer is just bad and that's all there is to it. I realized that I don't give many details about what the appointments are like. I have wrestled with whether or not to describe these things on this blog. I know if I don't write about them, we will forget what it was like. Will we want to forget? Or will it one day be a testament of what all God brought us through and how tough Hannah is? I don't know the answers to these questions. So I've decided to write about the details of two typical appointments (last month's and today's). I guess we can always not read it later if we don't want to.

    Last month was Hannah's yucky appointment where she had to be sedated and given chemo into her spinal fluid and also through IV. She's been through all of this enough to know what is going to happen at these appointments from the moment we walk into the procedure room. We are usually at the hospital for  3-4 hours - waiting in the waiting room, getting blood work results from the lab, having her physical exam with the doctors and getting prepped for the sedation. I think the waiting for the inevitable is hard for her. If we could get there and get it over with, it might be better on her. As it gets closer to the time of the sedation, more people crowd into the room and she starts to get upset. There are usually two nurses, the anesthesiologist, her doctor, a nurse practitioner and a child-life specialist (plus Eric and me) in a tiny room. Hannah doesn't like all of the people in there - I think because she knows what's coming. She especially doesn't like the feeling of the sedation medicine. One of the nurses told us that it feels like your head is getting squeezed. She cries when she gets this medicine. She knows she can't get away and that no matter how many times she says no - it's still going to happen. All she could do was hide her face under my arm and cry. This chemo made her feel sick on the way home and she rode part of the way holding her throw-up bucket. Then she usually has an upset stomach over the weekend. 

     She got a special treat at her appointment today. Her sweet buddy, Carly (one of the volunteers from the Lighthouse retreat this summer), met us at the hospital and stayed with us for the whole appointment. This made Hannah's day! Carly bought her cowgirl boots for Christmas - the sweetest gift! Hannah was thrilled! 

     

      Hannah did well until it was time to access her port. She fights it and I don't know what to do to make it better for her. We've tried giving her choices to help her feel empowered ("Do you want to sit in Mama's or Daddy's lap?") We try to give her the choice of being still so that we won't have to hold her down. We try to get her to think that it will be over in just a few minutes. We've tried to let her watch. We have tried turning her head so that she can't watch. Nothing helps. Today it took me probably a full five minutes to get her arm out of her sleeve. Doesn't sound like a hard thing, does it? Try getting one arm out of a long sleeve dress when the kid is fighting you, moving her arm and body around so much, making it nearly impossible. At any other time I would consider this blatant disobedience and she would be disciplined. But there's  no way that I'm going to discipline her at a time like that. Is that the right thing to do? Or would she feel more secure with more structure? I don't know what I'm doing with the special emotional needs of a chronically ill child. Where is the how-to book on all of this? Once I finally got her sleeve out, it was time for her port area to be cleaned and accessed. During this time, it would be best for the patient to be very still because if anything touches the area on her chest that has been cleaned, the nurse has to start over. But at this point she is kicking and screaming. I've learned to hold her legs between  my two legs keeping her from kicking and also freeing up my arms to hold her upper body. And once again the mother who is supposed to protect her child is holding her down, letting people hurt her. After her IV she felt much better. She seems to recover quickly and she's usually happy again after a short while. I guess that's the great part about her being four years old. But I worry - what will all of this do to her emotionally in the long run? 

     

We Did It!!!!!

This weekend was our half marathon that we ran for the Leukemia and Lymphoma Society's Team in Training. We have been working toward this goal since early spring. There were over 200 people from all over the country who raised money for the LLS and ran in this weekend's race. On Friday night we had the Inspiration Dinner where we got to meet each other and hear several stories of why people were there and what it meant to them and their families. We all stayed in the same hotel together and met at 5:15 a.m. for a picture and to walk to the starting line together. This was one of the most memorable and special weekends we've had as a family. We can't say thank you enough to all of you who donated to this amazing charity that is responsible for saving so many cancer patients' lives. 

Before

The best part of the race was being a member of the Team in Training. As members of the team passed each other during the race, we cheered each other on. There were also our teammates' family members, coaches and employees from the Leukemia and Lymphoma Society scattered all over the course who cheered for us. It meant a lot to wear Hannah's name and remember that we were running in honor of her. 

My mom and the kids made posters to cheer on the runners. They said that the runners loved the poster about being a great example and that several runners stopped to take a picture with Lauren and the poster. 

It was so fun to see the kids and our parents cheering for us during the race. They were standing near mile seven. We both stopped for a quick hug and high fives.

We saw Eric's mom and aunts at mile eight. I was not this happy and peppy later on during miles 11-13!!

After

Our hotel was right on the river. The kids loved watching the huge ships pass by. 

We rewarded ourselves with a big, delicious meal at Paula Deen's restaurant.

Halloween

Superman/woman was popular this year. This is Hannah and Flint, who she calls her "best buddy" and her cousin, Hendrix.

Here is the group picture with all of the cousins and friends. Lauren was a cat and Evan was a werewolf. 

This picture was taken on Sunday after Halloween when we went fishing. Hannah has worn her costume every day since Halloween. 

October

When we went up for Hannah's October appointment we got to eat dinner with all of our family volunteers from this summer's Lighthouse Retreat. It was amazing to get to see and catch up with them. The kids were especially excited! I'm so sad that I forgot to take a picture of us all together that night.

There have been so many illnesses going around that we feel like we've been dodging bullets. This time of year makes me nervous with flu, strep, fever and stomach viruses going around. Please pray that Hannah will not get sick and won't have to be in the hospital.

Hannah's appointment went smoothly. She was very brave during her pokes this time. This is her pretending to be a doctor, typing on her computer.

The next day we headed to Athens because I played for a wedding there. We got to eat dinner with one of my kids' favorite people, Carly.

Ten more chemo appointments!

September

Hannah's last appointment went pretty smoothly. Her blood counts were way down this time. We're not sure why. They have been good for the past several months, so it is odd that they dropped to about half of what they had been.

Getting a flu shot isn't fun for any of us, but adding it to the end of an appointment full of pokes did not make Hannah happy at all! She let the whole wing of the hospital know that she wasn't happy about it and it took three of us to hold her down. You would think that a little flu shot would be no big deal compared to what she's used to getting.

After Hannah's appointment we were able to visit with some sweet friends who were also there for treatment. In this picture, Hannah is curled up in my lap, still recovering from being so upset. After she felt better, she loved getting to spend time with Hannah Cate.

We took a walk in the garden and it was decorated for fall. 

When Hannah was really mad during her appointment, she yelled at Eric and me, "I quit!! I'm never coming back here again! I'm going to tear all the numbers off our wall at home and throw them away! I quit!" Once we got home, though, she was excited to turn the number 12 over and count down for just 11 more.

Lauren lost her two front teeth and is pretty proud of it. She just wishes the two new teeth wouldn't grow in until Christmas so she could sing the "All I Want for Christmas is my Two Front Teeth" song.

We Are Counting Down

   Even though we are disappointed that our trips to Atlanta won't end any time soon, we've decided to count down Hannah's remaining chemo appointments. We made these fabric numbers and hung them on the wall of our dining/living room. Just twelve more to go!!

   Hannah had her yucky appointment this past month where she has to be sedated. She knows what all this entails and dreads it. For some reason her blood sugar has been dropping during these appointments. This time she wouldn't wake up from being sedated. It was a little scary for us. We are glad that she only has to have this done every three months!

One Year To Go... But Not Really

Hannah had her first August appointment this morning (it works out where she will have two appointments this month). I had been so excited to post on here that she only has one year left for her treatment. While this is true (she will be finished with treatment next August), we have never gotten past treatment in our discussions with her doctors. They told us today that when she gets off treatment next year she will continue to go to the hospital for appointments and blood work every four weeks for ANOTHER YEAR after that. So we will be making monthly trips to Atlanta until August 2015, then every three months for a long time after that. The risk of relapse is highest in the year following treatment and gradually gets less with time. That is why she will be carefully monitored that first year off treatment.

I don't want to sound like I'm complaining. I am thankful that such a great team of doctors will be carefully tracking her health. Only going once a month is better than going once a week like we did for six months - I am thankful for that. I just had it in my mind that I could kind of see the light at the end of the tunnel, that we had to just get through the next year. I'm feeling a little discouraged today. I hate it for Hannah. She dreads going to the hospital and getting poked. She won't be getting chemo in her body after this next year of treatment, which is so much better for her. But nothing will change as far as us scheduling our lives around these trips...finding someone to keep Evan and Lauren, Eric taking off work, the long drive, Hannah hating to go to the hospital, etc. It feels like this is never going to end.

We have chosen to be positive and thankful through this journey. We will continue to be that way - I just need a couple of days to get used to this new information and get it in my mind that this is the way it's going to be. I have to keep remembering all we have to be thankful for. It just feels a little disheartening today.

Hannah begged to get out of the stroller and run with us this morning. 

Thrift Shop

My kids don't even listen to the regular radio - but somehow they know every word of this song. I thought this video was hilarious! (And yes, we are in a restaurant.)

July

As usual, I am very late in putting these posts on here. This month has been good. Hannah has felt good overall except that her stomach hurts almost every day and is often upset. I think she is extra tired some days. Neither of our other kids still needed a nap at age four and she usually does. But if those are the only side effects of all the medicine she is taking, we are thankful!

Our sweet girl, Lauren, turned seven!

Hannah's chemo appointment was scheduled for July 5, so we went up early to try to make it a fun family time. Eric and I ran the (very wet and rainy) Peachtree Road Race on the 4th. We were able to run in support of the Lighthouse Family Retreat.

We watched fireworks between rain showers. 

Also, our kids have a new cousin - Hendrix Spurlock. Congratulations, Rocky and Whitney!

Asking for your help!

You could probably guess this post was coming. :)

This is where we ask for your help.

A couple of weeks ago I mentioned that Eric and I are training for the Leukemia and Lymphoma Society's Team in Training. We cannot believe that we are training to run 13.1 miles! It seems almost impossible! But when we think of what our little Hannah has had to go through this year (and the other families we've met in the same circumstances), it doesn't seem that impossible at all.

Unfortunately, most everyone's life has been affected by cancer. Will you help us by donating to this most worthy cause? Your donation will help bring support to those affected by blood cancers and help us reach the ultimate finish line of finding a cure for blood cancers. Just one example - research funded by the Leukemia and Lymphoma society is responsible for medicines like Gleevec. We personally know children whose lives are being saved because of this new medication. This is your opportunity to help save a life!

I hope you will consider making a donation. All donations are 100% tax deductible. To make a donation online, quickly and securely, please visit my TNT homepage. Your donation is appreciated more than we will ever be able to express!

If you know of anyone who would be interested in donating to the LLS mission, please forward the link to your contacts. We are incredibly grateful for your support!

Lighthouse Family Retreat

We had the privilege of attending the Lighthouse Family Retreat for a week in June. (I've waited to post about it because I was waiting to get some pictures in the mail.) It was one of the most wonderful weeks our family has ever had together! The LFR describes what their mission is as:
    "Lighthouse Family Retreat serves children with cancer and their families at a seaside retreat to help them laugh, restore family relationships and find hope in God."

We had heard from other families how great the retreat was, but we had no idea how much fun it would be and how good it would be for each one of us. There are no words to describe how amazing the volunteers were! We were assigned two families as our personal volunteers and there were many more there to cook, serve, do the music/worship, play with the kids and help with activities. There was a whole group of Summer Staff volunteers. These were college students who had given their entire summer vacation to serve the families at these retreats. This is a picture of just some the volunteers entertaining us at dinner:

We definitely had the best family volunteers assigned to us. Here is us with Nate and Lindsey:

We somehow didn't get a picture of us with our other family volunteers, Bob, Barb and their granddaughter, Molly. (I'm very sad about that!) Lauren and Hannah quickly became great friends with Molly.

Lauren and Hannah fell in love with one of the college volunteers, Carly. She spent hours playing with them and was so incredibly sweet! All of the volunteers took a week of their vacation time and paid their room and board expenses to serve families like ours for a week. Who does that? We are blown away from this and the love that was poured out on us!

Our kids had the best time playing with the children of the volunteers and other retreat families. They had lots of time to play on this big open area. There were games of football, nine-square and tag going on all the time.

This is the group photo of all the retreat families. Look how many people were blessed by this ministry!

We are so thankful to this ministry for allowing us to have a week to relax and have fun at the beach! Each morning the kids went to their fun activities and the parents went to a group time. It was such a unique and healing experience to be in a room full of parents who are also walking through this journey of childhood cancer. We enjoyed every minute of our week and hope to be a volunteer family one day!

Team in Training

Eric and I have decided to do something we are very excited about. We signed up for the Leukemia and Lymphoma Society's Team in Training. We have formed a team and will be running in the Savannah Rock 'n Roll 1/2 Marathon on November 9. We will be running in honor of Hannah with all proceeds going to the Leukemia and Lymphoma Society to fund research. Does anyone want to join us and be a part of our team? Let me know if you are interested and I will give you more information. The LLS explains it better than I can, so here is the description from their website:

About Team In Training

Our athletes have walked away with new friends, amazing accomplishments and the sense that they did something even more important than getting in good shape.

How serious is blood cancer? Every four minutes, someone new is diagnosed with blood cancer. Every 10 minutes, someone dies.

In exchange for training and support, you help raise money towards cures for blood cancers like leukemia -- the No. 1 disease killer of children -- lymphoma and myeloma.

The Reason

• Coaching and training
• Travel to a major marathon, half marathon, century, hiking adventure or triathlon in exciting locations
• The opportunity to make your athletic goals a reality (an unbeatable offer with great personal rewards)
• A connection with an honored patient so you know just who and what you're doing it all for

As the largest endurance sports training program in the world, we will provide you with the experience of a lifetime.

Team In Training Benefits

Join the thousands of runners, walkers, cyclists hikers, and triathletes who will participate in the world's major marathons,half marathons, centuries, hiking adventures and triathlons this year.

And if you're looking for a program to fit your busy schedule, now there's TNT Flex, a flexible, customized, online training option developed by TNT's renowned coaches.

If crossing the finish line after running or walking 26.2 miles or 13.1 miles, cycling 100 miles, completing a triathlon or hiking adventure while helping cure deadly diseases are things you've always wanted to accomplish, The Leukemia & Lymphoma Society's Team In Training ^® will make them happen.

LLS's Team In Training (TNT) has become the leader in endurance sports training for charity, funding significant therapies like chemotherapy and bone marrow transplants, which have a significant impact on blood cancer patients.

Today, LLS funds only the most promising advances; targeted therapies like Gleevec^®, Velcade^® and Dacogen^® take aim at cancer cells, and destroy them. Immunotherapies use a patient's own immune system to kill cancer. And the repurposing of existing drugs for arthritis and antifungals to fight specific leukemias are breakthroughs that allow patients to live their best life, today.

TNT and LLS fundraising efforts through marathons, triathlons, cycling and hiking really are making cures happen. Coaches will expand your fitness level with workouts, nutrition and hydration clinics. And you'll have staff members to help with fundraising support.

www.teamintraining.org

June

I am once again late posting on here. For what is supposed to be a relaxing summer, this month has been very busy for our family. Hannah had a good appointment for this month. She had to have her sedation where they insert the chemo into her spinal fluid. Her favorite nurse who usually does these procedures had a baby, so Hannah was sad that she wasn't there. But there was another wonderful nurse to fill in for her. This picture is Hannah before she woke up from her sedation. For as "normal" as all of this hospital stuff has become for our family, Eric and I will never like seeing all of the tubes and wires hooked up to her.

We stopped at Callaway Gardens on our way back from Atlanta. The kids loved the butterfly house.

While taking pictures, a butterfly landed on Evan's leg. Don't you love how Lauren doesn't let the butterfly distract her from posing for the camera! :)