Hug Your Children

     How long can I stare at a computer screen and not know what to write? My heart is so very heavy as I work on this post right now. I'm sure this won't come out the way I want it to, but I feel like it needs to be said.
 
    Yesterday, Hannah had an appointment at Egleston - not her regular chemo appointment but some extra testing. It took about three hours and during this time she was back with the doctors and I was in the waiting room. There was another family there doing the same thing. They were a mom, dad and a six year old boy. I noticed that every time the little boy would come out for a bathroom break/go back for another round of tests, his parents would both hug him and say, "I love you!" We were in a different part of the hospital, seeing a different set of doctors than the normal team. I thought to myself, "Well! These parents obviously want the doctors to see that they are a close, loving family! Good gracious! Their kid is just two doors down - they will see him in a few minutes! Aren't they being a little excessive in their show of affection?!"
 
   How quickly I would regret those thoughts!

    From the few comments I heard from them, their son obviously had cancer. We were stuck in this small waiting room for three hours together. So, what do I do? Strike up a conversation with them. It started "normal" enough - "What type of cancer? Which doctors do you see? Where are you in treatment?" But the conversation quickly moved from these "light" questions and answers (yes, it is strange and messed up that those types of questions are "normal" and "light"). They then told me the heartbreaking story of their journey.
   
     Their son was diagnosed three years ago with an extremely rare and aggressive type of Leukemia. The doctors at Egleston have only seen one other patient with it. Ever! He was given a 0% chance of survival at the time of his diagnosis. He has had two bone marrow transplants (a.k.a. hell on earth) and such strong chemo that the doctors said an adult wouldn't have been able to survive it. (Kids bounce back much faster than adults do). The chemotherapy fried his adrenal gland which regulates almost everything. Without this gland, his heart rate isn't regulated properly. If he gets too excited or agitated, his parents have about a minute and a half to give him an injection before he has a heart attack. He also doesn't produce tears and has a high chance of going blind. His doctors expect his cancer to relapse, at which point there is nothing else they can do. His doctors told his parents to just enjoy every day they have with him.
   
     As I was crying about this on the way home, I very selfishly asked God why He would sit me down beside them and why I had to make conversation. I could have just kept my mouth shut and read my book. I am the type of person who doesn't like to watch the news because the tragic stories affect me too deeply. I don't like to carry around sad, hard things in my head and heart. I want to focus on Hannah almost being finished with treatment and hopefully us starting a new chapter in our lives without this evil cancer being a part of it.

     I can't get the look in their eyes out of my mind. I can't stop thinking about the sweet, precious face of their little boy.

     So, yes - they hug him every chance they get. They say, "I love you" often. And this is not excessive or a show. They are cherishing every moment with him, not taking one day for granted.

     This was a pastor and his wife. Their perspective was amazing and inspiring. They had accepted their lot and were trying to make the most of the time they had with their son. Even though it would have been much more comfortable to just read my book, I am thankful for the conversation I had with this couple. A part of me wishes I wasn't carrying around this burden in my heart today and now I've shared it with you. But there is a very important message to be learned here:

      Hug your children. Kiss your babies. (Or your loved ones - if you don't have children). Take an extra few minutes to tuck them in tonight. Don't be too busy to look them in the eyes and really listen to what they are saying. Thank God for today, for health and family. Cherish the moments. We are not guaranteed tomorrow.

     Please pray for this family.

    And please get involved. This has to stop! Everyone has someone affected by cancer. It is horrible and heartbreaking. Be involved with your local Light the Night or Relay for Life. Sign up for a Team in Training event. Donate to St. Jude Children's Research Hospital. It makes a difference! They are coming up with new, life-saving research all the time.

March

Hannah had to be sedated for her procedure this appointment. She also had to have some extra testing done this time that could only be scheduled during the middle of the week. This is Eric's busiest time of the year with work so I took her by myself. This is the first time in almost two years of appointments that I had to go alone. I'm so thankful that Eric is able to go with us almost all of the time. Hannah and I both missed him this trip!

She was upset when she figured out that she had to go into the sedation room and, as always, tried to fight when it was time for them to put her to sleep. She is getting older and asking harder questions such as, "What do they do to me while I'm asleep?" I wasn't sure how to explain that they stick a needle into her spinal cord and put chemo into her spinal cord fluid without scaring her.

In the waiting room bright and early (she had an 8:00 appointment). She looks very cheery for having to wake up so early - this child is not a morning person! 

The Georgia Chapter of the Leukemia and Lymphoma Society has asked Hannah to be their "Honored Hero" for their Spring season. We got to meet the team and go for a run with them. These amazing people are giving (a lot!!) of their time to fundraise and train for the Nike DC marathon/half marathon and the Seattle Rock 'n Roll marathon/half marathon. It was very special for us to get to meet them and we are thankful for all they are doing to help find a cure for blood cancers! 

These are just a few of the team members. Hannah arranged us all for this picture. :)

Only five more appointments! 

At Hannah's appointment I was trying to comfort her about having to be sedated. I told her that she will only have to be sedated one more time. This brought up all kinds of mixed feelings in me. As we are nearing the end of treatment you'd think that I would be thrilled that my daughter soon won't have to have chemo put into her body anymore. A part of me is thankful and glad that the chemo will be ending soon. But another part of me doesn't want it to stop. Crazy, right?! The chemo is effectively keeping her body from making new cancer cells. So when it stops there is a chance for relapse. In my heart there is comfort in chemo. I never thought I would have these thoughts! And how much do we celebrate this ending of chemo with Hannah? Is it fair to cheer and say, "Only one more sedation! Only five more appointments of chemo!" What happens, then, if she relapses? How devastating for her to think it was all over and then have to do it again (and treatment would be much worse on her a second time!) Here, again, is where I need an instruction manual on all of these issues. 

Happy Birthday, Hannah!

It can't be possible that our baby is five years old! We are so very thankful to be able to celebrate another birthday with her!

Hannah had a wonderful day on her birthday. She chose pink for the color she wanted her breakfast pancakes to be. 

We love this girl!

February

Hannah was scheduled for her sedation appointment early on Friday morning (Valentine's Day). This was the week where the second bad ice/snow storm came through Atlanta. Eric and I didn't know if we would be able to make it up to Atlanta because of the weather. Because her appointment was supposed to be so early on Friday (and we don't think it's fair to wake her up extra early to ride 3 1/2 hours without eating and drinking before being sedated), we drove up on Thursday. We took Eric's truck, which has 4-wheel drive, in case we ran into any snow/ice. As we passed the Atlanta airport, the hospital called and said that her sedation was cancelled because they wanted to make sure that all the families could safely get to the hospital. They changed her appointment to a regular chemo appointment and moved it to Friday afternoon. This left us all of Friday morning with nothing to do. Wonderful! There was still a little bit of snow on the ground (more than Hannah had ever seen) and we got a chance to let her play in it. She had a great time!

Hannah was amazed at how much snow was piled up in the parking lots!

Attempting to make a snow angel. There wasn't enough snow for this. 

Trying to sled - not enough snow or a big enough hill. 

Hannah did the best she's ever done with her pokes this time! We were so proud of her! The nurses did a great job making Valentine's Day special and had treats and toys for her.

Eric, painting her fingernails while I filled out paperwork. 

We ran into these guys after her appointment. They are the hospital's mascots. Their names are Hope and Will. 

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!

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?