Last Chemo Day!!

     August 8 was Hannah's last IV chemotherapy appointment. She had to be sedated for this appointment, which she hated. I don't have words to describe that day. It was such a mix of emotions for me. I was relieved and happy to be finished. I was scared for her to stop the chemotherapy. I wondered if life would ever feel normal again. I wondered how we were supposed to just move on from this whole ordeal.
    We had a long talk to her doctors about after-treatment issues - risk of relapse, what to watch for, long-term effects, etc. Since day one Hannah's doctors have been incredible about spending time with us to explain things and answer all of our questions. They endured all of my crazy-Mama questions and concerns. They were always careful and thoughtful to make sure Hannah was healthy. They treated us with such kindness and compassion. They saved our daughter's life. And the nurses...the nurses. There are no words. There was never a moment when they were not sweet, patient and understanding. They truly showed us love every time we stepped foot in that hospital. They put up with Hannah through her steroid tantrums, through her kicking and screaming and having to be held down for pokes. They never got frustrated. How can our gratitude ever be expressed to these people?
      Leading up to and especially during that day I felt like I had some survivor's guilt. It's not fair that my daughter gets to be healed and walk away from this disease. Why did she get the curable kind of cancer when so many other children don't? Why do we get to live in the United States where we have access and can afford healthcare to cure her. I have felt these things throughout her illness but it was extra poignant that day.
     During this sedation and the last one, Hannah fought the doctors. The doctors said she was kicking and bucking while she was supposed to be asleep. I don't understand what went on in her subconscious mind. How much can be processed and understood during anesthesia?  They had to give her extra anesthesia to make her be still for the procedure. I felt bad for her because she hates it so much that she fought even through the drugs. She definitely has a fighting spirit! I think this toughness in her has helped her cope over the last two years.
      It took her longer to wake up from her sedation because of the extra anesthesia. I just wanted to get out of that place. I have noticed that the more we go to the hospital, the more I want out of there. There is such a heaviness in that place for me. I can see it on the worried parents' faces. I feel it when I look at the kids with their sick, broken bodies. And I also felt the rush of emotion coming on from deep in my heart. Every one of the things I mentioned in the previous paragraphs were welling up in my heart. All I wanted to do was get to the car so that I didn't cry in front of everyone. I held it together until the last few minutes. Her doctor came in to check on her one last time. Hannah was still asleep. Her doctor leaned over, looked at Hannah and offered these words of encouragement to help me not worry about the awful possibilities of relapse and more cancer: "One day she will be an old woman, sitting on her porch, watching her grandchildren play." And I lost it. I mean ugly crying where you can't talk and can barely breathe. I think in my heart that moment will stay with me forever.

When we got back from the hospital, Lauren, Evan and Gam had decorated the hotel room with pictures and balloons.

Lauren was so sweet and excited for Hannah to be finished!

      We had a dinner with our Atlanta friends to celebrate. I think it was one of my happiest nights ever! It was such a special time with these awesome friends who have loved and supported us through it all. We love them all!

  When we got home the next day there was a surprise waiting. Sweet Aunt Dee Dee and Aunt Whitney, with help from our wonderful Arlington neighbors, decorated our yard. Hannah, Lauren and Evan squealed with excitement when we drove into our driveway.

The last number!! Can you tell how excited she was? 

Lauren's happy dance.

This picture was taken the day we got home from the hospital after she was first diagnosed. 

This girl has been through a lot. She is strong and resilient. We are thankful. So very thankful!

Summer Recap

   I'm pretty sure there is no one out there who still checks in on this blog. I have completely failed in updating it over the last few months. I'm sad about that because there was so much that happened and I wish I had kept up with it. There were a couple of reasons for this failure. First, our computer, which we had for eight years, died a painfully slow death. And when I say slow, I mean it would take ten minutes or so to import one picture onto this blog, and sometimes even typing wouldn't work. It would take forever to create a post, so I procrastinated in keeping it updated. The other reason is that I had so many conflicting emotions about Hannah getting to the end of her treatment. I didn't know how to process all that I was feeling and didn't have the mental and emotional clarity to get it down in writing. That being said, I will try to remember the summer as best as I can on this post.
   

Lauren and Hannah had their end of the year dance recital.

Afterwards, Lauren was happy and thrilled from the performance.

And Hannah had a meltdown.

This is a random picture taken after dance class. I think it captures Hannah's spirit perfectly. She is girly in her dance outfit but also rough and tough (notice the shredded tights, which were probably a brand new pair!) And no outfit would be complete without her cowgirl boots! 

We were extremely thankful and excited to go back to the Lighthouse Retreat this summer. As always, I was not good about taking enough pictures but here are a few to remember the week by.

    Hannah's appointments went smoothly over the summer. Her blood work looked great and except for two emergency room visits for fever, there were no other problems. 

This is one of the amazing clowns at the hospital. She is showing Hannah an invisible ball that made sounds when thrown into a paper bag. Hannah was mesmerized and very disappointed when the trick wouldn't work at home. 

May and a Hospital Stay

As usual, I am about two weeks late posting about Hannah's appointments. She has had some extra stuff going on lately. Over the last several months we noticed that her blood sugar had been dropping. It happened a couple of times during her procedures. After I started checking it at home, we discovered that it was happening fairly often. Her doctors wanted her to be admitted to fast and let her blood sugar drop so that they could do tests on her blood while the sugar was low. Her sugar usually starts to drop after about 13-14 hours of not eating. The fasting was mainly going to be overnight, so we thought it wouldn't be that bad on her. There was a mix up about when to give her a Cortisol test (which is a steroid that raises blood sugar). Instead of this test being given the night before, the nurse gave it to her that morning. This made her blood sugar not drop like it usually would have. We tried to make her day as fun as possible and made several trips to the garden.

Waiting for her sugar to drop. She really enjoyed riding on her IV pole. 

What should have been a 13-14 hour fast turned into 22 1/2 hours. We felt so sorry for her - she was really hungry and miserable. Once her sugar dropped (it got down to 36), she felt worse. Then she had a reaction to one of the tests they gave her and started throwing up. It took about an hour and a half after the tests for them to get her sugar up enough so that she felt better and could eat. I've never seen a child eat so much! I didn't take any pictures through all of that because it was rough and we were busy. The doctors wanted her to stay another night to make sure she did well with a couple of meals in her. We are still not sure why her sugar has been dropping. They did not have all of the results from the blood work by the time we left. We will have an appointment with the Endocrinologist in a few weeks to discuss what they found out. Her Oncologists are thinking that it is caused by one of her chemo medications. This would be the best case scenario because that will be over soon verses finding out that she has another medical condition. 

Even breakfast the next morning was extra delicious to her. 

Throughout our experiences at Egleston, I have often wondered how this hospital finds such excellent nurses and staff. I wondered if it was only because we spent all of our time on the cancer floor (and you have to be a truly special person to work with kids being treated for cancer, right?!) This hospital stay confirmed that all the nurses and doctors who work at this hospital are amazing. Everyone was so kind and attentive. Hannah especially loved her nurse named Wendy, who knew and sang all the words to the songs from the Frozen movie with Hannah. Eric and I often say to one another that even if Egleston was a farther drive we would not complain about going there.

Leaving the hospital. 

We got discharged around 5:30 on Thursday afternoon. Her chemo procedure appointment was scheduled for 8:00 on Friday morning. So we stayed the night and my mom came up to help the next day. It was hard for Hannah to finally get out of the hospital and then find out she had to go right back the next morning. She kept saying she just wanted to go home. My heart goes out to the families who have to stay in the hospital for weeks and months at a time. I cannot imagine! 

Hannah and her Lolley getting started at her appointment. 

Her appointment was fine. She just really dislikes having to be put to sleep. The doctors said that this time she was fighting them while she was sedated. This child will let you know what she's thinking and feeling! After her chemo she had to have an x-ray on her legs because she's been having leg pain. Everything was normal on the x-ray, so we are not sure what is causing the pain. She was a trooper to make it through several long days in a row. She's a tough little girl! 

Just three more chemo appointments to go. We're getting closer!! 

Some Amazing People

This awesome group trained with Team in Training and raised (A LOT!) of money for blood cancer research. They recently ran in the Nike DC Women's Marathon/Half Marathon. Hannah got to be their Honored Hero and meet some of them a few months ago. (They are holding a picture of her on the left of the photo). We are so thankful to them for giving their time to help find a cure. What an accomplishment! Thank you!

Hannah's Wish

Last week we went on a Disney Cruise for Hannah's wish from the Make-A-Wish foundation. The kids had the best week of their lives! We had perfect weather and made many family memories. We can't say thank you enough for this incredible charity and its volunteers!

This was Hannah's first time flying in an airplane. She was thrilled!

She was definitely the only one on the cruise ship wearing cowgirl boots. 

This picture was taken on our way to the dolphin encounter. Hannah wanted to pet the dolphins more than anything else on her trip. We were in the water during the whole encounter and I didn't get any pictures. I'm really sad about that (but I refused to pay $70 for the three pictures they took). She loved it!

The girls wore their princess dresses to dinner on the ship. 

Visiting with Minnie Mouse on the island.

Make-A-Wish had a special time for the Make-A-Wish families to meet Mickey. There were eight or nine other Make-A-Wish families on the cruise. It was nice to get to meet and talk with the other families. 

Our room attendant brought these beds down out of the wall and ceiling every night. The kids all took turns sleeping on the top bunk. 

This was my favorite moment of the whole trip. It is a poorly taken picture (blurry and way too much of that woman's rear-end behind them), but I'm so glad that I caught this moment on camera. We had waited for almost two hours to meet the princesses and it was their turn next. You can see the pure joy and excitement in their faces. This made the long line totally worth it! 

Hannah had so many questions for the princesses. Here, she and Lauren asked if that was her real hair or a wig. Rapunzel said that of course it was her real hair! 

Hannah asked what Tiana's dress was made of. Tiana told her it was made of lily pads. 

Before we got to Ariel, Hannah told me that she was planning to run up to her for a hug. Hannah is at that wonderful age where she still thinks the princesses are real. Priceless! 

She stood like this, talking to Cinderella for a long time. I couldn't hear what they were saying, but I'd love to know. 

Hannah met a friend who is her age. They had the best time playing together on the island and on the ship. 

Eric and I went to the Bahamas for our honeymoon. We took a picture in this chair and the kids have seen the picture enough that when they saw the chair at Atlantis, Evan said, "Hey, that's the chair from the picture!" A lot has happened in ten years! 

Thank you, Make-A-Wish, for making this trip possible! It was wonderful to have something for the kids to look forward to and for us all to have a break from ordinary life. We will never forget this time we had together. We will always be thankful for these memories!