Wednesday, February 19, 2014

January

I'm very late posting about Hannah's January appointment. Time flies by and before we know it, it's time for another appointment. Her January appointment was a normal chemo day and she did really well with everything. Eric is the best at distracting her during her pokes. He makes faces behind the nurses' backs and when Hannah tells the nurse to turn around and see him he quits and acts like he doesn't know what she is talking about. By the time the nurse is ready to poke Hannah, the whole room is belly laughing. He is the best Daddy! Hannah and I are both so thankful that he can take off work to go to most of her appointments.



We had a long discussion with Hannah's doctors about some potentially lifelong side effects from her cancer/chemo. I won't go into too much detail on here out of respect of Hannah's privacy. There's so much more that goes along with having cancer than just the cancer itself.

The week before Hannah's appointment, we learned of a family (friends of a friend) whose little three year old daughter had just been diagnosed with Leukemia. We were able to stop by and meet them since their daughter was inpatient. The looks of exhaustion and worry on their faces brought back so many memories. That first month is the worst. Would you take a few minutes and pray for this family right now? They have such a long, difficult road ahead of them.



Seven more to go!

Monday, December 30, 2013

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? 
     

Sunday, November 10, 2013

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!

Wednesday, October 23, 2013

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.