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Hannah's Page

Welcome to our Child's Web Page. It has been provided to keep people updated about our Child. Hannah was 13 years old when she was diagnosed with Burkitt's Lymphoma on Sept. 7, 2004. Burkitt's is a rare, aggressive form of non hodgkins lymphoma; it is curable.
On August 5, 2004 Hannah won a gold medal at the Jr. Olympics for olympic style weightlifting. She could snatch 115 lbs. and clean and jerk 126 lbs. She also won the School Age Nationals in June in New Jersey. She was an 8th grader at Wheatridge Middle School and had just made the volleyball team when she was diagnosed. She is a strong girl, but still likes all the girly stuff...cute clothes, make up, purses, hats (even before she lost her hair) and shopping on the internet. Her favorite thing about school is the socializing! She's all girl with a strong body and mind. She loves her family and friends and is doing everything in her power to fight this disease.
Her page is updated every couple of days, please read the journal history, if you've missed something. She's an awsome gift from God!
On June 22, 2005 we found out her cancer was back. Her fight continued. She was enrolled in a clinical trial, but contracted an aspergillus fungal infection and was dropped from the trial. She endured numerous surgeries to beat the odds and survive the infection. She was the first pediatric patient to try AMD3100 to help harvest her stem cells. She had a stem cell transplant on Nov. 29, 2005 and finally returned back to school in August 2006. She is surviving!

Journal

Sunday, September 7, 2014 3:01 PM CDT

10 years ago today Bob and I were taken into a small conference room at Children’s Mercy hospital and told that the pathology report came back showing that Hannah had lymphoma. It was the first time in my life that I had no words. The doctors left us alone to cry for a couple of minutes and then we had to walk down the hall to Hannah’s room to give her the news. I still had no words. The four of us stood and sat around Hannah’s bed and the doctor told her that she had cancer. Hannah asked, “Am I going to die?” The doctor told her that there is a treatment for this type of cancer and Hannah just said, “Okay.” I had no idea what was in store for Hannah and our family but I knew that somewhere deep inside all of us was the strength we would need to get through this. I would need that strength when she relapsed, when she developed a fungal infection, when her bone marrow donor wasn’t available, when we were scared about other relapses, and when she was in a 17 hour surgery to repair the damage done to keep her alive. Throughout all of that I only worried and watched. Hannah actually did all of that!
10 years later. I can still remember so many details of those days and years. I want to make one last Caringbridge update today because there IS life AFTER cancer. I updated our story on Caringbridge during Hannah’s treatment because I wanted the world to know what’s behind the doors of a cancer family’s life. There is so much more than people can imagine. So many people carried us in their hearts during that time and prayed us through. So, here we are, 10 years later!
People still ask me about Hannah’s health and my answer is, “She’s doing great!” The reality is that the answer has about an hour’s worth of other details that I just don’t talk about. Compared to where she was, she’s great. Compared to healthy people, she’s so-so. She no longer has B cells so that causes some problems. Her immune system is permanently compromised. She doesn’t have the “trigger” to tell her white cells to fight off germs so she gives herself a 2 hour infusion of donor antibodies once a week. She’ll do that for the rest of her life. $8,000 a month. 4 needle sticks into her abdomen. Kind of sucky. She also doesn’t have any IgA. It’s kind of complicated to explain but it has an impact on all of her mucus membranes. Digestion and such. Again, sucky. She lost some hearing and has a hole in one of her eardrums. Low immune system plus hole in the ear equals sinus and ear infections. Oh, and her mutilated sinus cavity doesn’t help either. She has constant drainage. Drainage and the lack of IgA causes throat sores at various times too. She has occasional insomnia and fears about what every new symptom means. I can’t even read about the long-term side effects of childhood cancer. I just can’t go there. Really. It’s even more than sucky. So, that’s her health. She lives with it every day and hardly complains. It really makes it hard for the rest of us to complain about any aches or pains. Hannah’s alive and we know what a gift that is. So, yeah, she’s alive and that makes her health great!
10 years later. Hannah graduated from Baker University last December and is now the Community Resource Coordinator for Boy’s Hope Girl’s Hope Kansas City. She left today for training in St. Louis. She’s a grown up. Jacob is working with the Baylor University football Strength and Conditioning program. He’s been in Texas for over 2 years and we still get to cheer for his football teams! Bob is now the sergeant for the bomb squad at OPPD. Boys like to blow things up and some of them get paid to do it. I’m still at Children’s Mercy. I think we’re all right where we’re supposed to be.
After cancer our life is different than it was Before it came into our lives. It’s different because we see life through different lenses. We’re the same people only changed in how we see things. We’ve tried hard to not let cancer be our identity, but I do think it’s our backdrop. I want our life to be so much more than cancer. When we were in the midst of Hannah’s treatment I often wondered how it would change me. I knew I’d be different. I hope I’m better. I can still waste time with best of us, but I’m also very aware of every precious moment. I remember looking at the minute hand of the clock in the hospital on Hannah’s worst night and wondering how many more times it would go around while Hannah was still on this earth. Those moments were soooo precious. I was aware of every single second and grateful for each breath she took. I don’t sit here and stare at Hannah anymore but I am aware that this hour is as worthy of my gratitude as those were. I’m just grateful. I’m grateful that Jacob is doing what he loves to do. I’m grateful for a job where I feel that I’m making a difference. I’m grateful for a marriage that just gets better every year. I’m grateful that Hannah is alive. I’m grateful for my friends and the joy they bring to my life… you get it. I know that we escaped childhood cancer so I am going to honor life by recognizing the real gift that life is and being grateful for it. Every. Single. Day. We have too many friends whose child didn’t escape. We honor life for them.
Over the last 10 years I’ve learned some things:
1. Different people cope in different ways. Let them cope in their own way. Don’t judge them. You probably don’t know ALL of the details. Sometimes the best we can do is to get through the moments. It’s not always pretty. It doesn’t have to be. Tough times are just that – tough!
2. Provide support to someone going through a hard time but don’t give them advice. My rule is that if you’re not changing their rolls of toilet paper, don’t tell them what to do. Once again, you probably don’t know ALL of the details. When someone is going through a hard time, they need your support. Listen to their story or sit quietly with them; let them work it out. Give them encouragement to do what they feel is best for their family. All of the advice (and LOTS of people give it) adds to the stress. Don’t add to their stress. If you’ve been through something similar you can say, “This is what I did,” or “I found it helpful to…”, but never, “You need to say this, or do that, or tell that doctor to…” Learn to be a good listener or a quiet sitter. I cherished those people!
3. Time keeps moving no matter how bad or good the day is. If it’s a really bad moment, just hang on, the moment isn’t permanent so just do what you need to do to get through it – cry, sleep, rant, curl up in a ball… and things will change. If it’s a really great moment, cherish it, acknowledge it, take a picture, write it down… things will change so honor it.
4. God is ALWAYS present. You don’t have to know how to do any of this! The right person will show up at the right time. In my worst of times, God sat quietly and cried with me. In the best of times, God was doing the happy dance with me. I’ve stopped trying to “figure it all out” and instead rest peacefully in the knowledge that our human minds aren’t meant to understand the divine. Our job is to proceed through life believing that God will catch us. To be that shining light that is brave enough to show up during the dark times, the boring times, and those most joyous times. I don’t think that life is meant to be done alone and God gave us all these human beings to be here for each other.
5. It’s hard to be on the receiving end of the help. Be gentle with others. I think it’s easier to be the giver than to be the receiver. I’ve been on both sides. When you need it, let yourself be the receiver. God’s grace is in the gifts others are giving. You will find strength through those gifts. Accept them. Don’t deny someone the privilege of being the conduit of that grace. If you ever wonder if you should do something, the answer is yes. Even the smallest act of kindness matters.
When I think back to those days, my memories aren’t just about the hard times but also of all the wonderful acts of kindness that so many people did for us. It’s impossible to describe the difference a kind act has on people. We still have a huge box of cards that people sent to Hannah. They gave us strength. We still have the signed cooler that was on our front porch for 2 years. Every time I look at it I think of all of the people who drove so far out of their way to bring us a meal. Those meals not only nourished us but each act of kindness gave us strength. The donations to help pay our bills – strength. We could focus on Hannah and Jacob because of all the support we received. Cancer takes all of your energy. Society’s kindness and prayers gave us the strength to keep going. Ten years ago when I first heard those cancer words, I didn’t know how we’d do it. You showed up. So thank you! You helped us get here. A beautiful life. It still has all the regular troubles but that’s how life is. And LIFE is good.
I have told you all this so that you may have peace and trust in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33

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Hospital Information:

Patient Room: HOME!!!

Children's Mercy Hospital
2401 Gillham Rd
Kansas City, MO. 64108
816-234-3000

Links:

http://www.caringbridge.org/visit/nathan_thomas   Nathan's web page
http://www.youtube.com/watch?v=8VlK1G_QTyo   Hannah's video
http://www.caringbridge.org/visit/bladewinter   Blade's web page


 
 

E-mail Author: deejo_222@yahoo.com

 
 

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