Here is Georgia in her costume..... it's actually what she should wear everyday but she prefers to fly under the radar.
Monday, October 31, 2011
Happy Halloween
Last year was Georgia's first Halloween and we were stuck inpatient, not allowed to leave. This year despite a trip to the clinic at Children's we're home and happy and her lab work says she's doing well!
Here is Georgia in her costume..... it's actually what she should wear everyday but she prefers to fly under the radar.
Here is Georgia in her costume..... it's actually what she should wear everyday but she prefers to fly under the radar.
Saturday, October 29, 2011
Soulumination
After Brian and I were engaged one of the first phone calls I made was to photographer Lynette Huffman Johnson, I'd seen her work and loved her style. When I called I was told that Lynette was focusing on another business venture and wasn't doing weddings at the time, she recommended Kurt Smith who we were thrilled was available - Kurt did our wedding and photos of our family when Georgia was 11 days old.
Photos of your child and family are so precious so when I heard that Tara Clark another very talented photographer was doing a fundraiser called "Giving Everyday in May" to raise money for Soulumination, a non-profit organization - I thought, win, win - get a couple of professional pictures of Georgia at six months old while helping a worthy cause. Little did I know this organization would soon be coming to help me.
Turns out the business venture that Lynette was focusing on at the time of our wedding was Soulumination, this organization celebrates the lives of children and parents facing life-threatening conditions by providing professional photographs, free of charge.
In the weeks after Georgia was diagnosed several people encouraged us to have Soulumination come to take pictures, I hesitated at first still coming to grips with the fact we were a family that qualified for the work they do. I am so thankful that we did, Lynette herself came and captured pictures during a very delicate time in our lives, Georgia was at the end of losing her hair.
Just a few days before being discharged after transplant I got an email from Michelle Enbo, a photographer who'd learned about our blog through a friend. She offered to take pictures for us, free of charge just because our story touched her. We took her up on it, she documented a monumental day, Day +100 post transplant. She is now a Soulumination photographer.
Each of these photographers as well as several others make up this awe inspiring non-profit organization. When I saw on Facebook that they were looking for volunteers to help with a mailing project, I responded, hoping I could give back to this group of amazing people who has given so much to us. When I picked up the mailing materials Lynette said, Georgia looks so wonderful, we really should do a follow up photo shoot here at the studio... Lynette is amazing, always giving and giving and giving. Later that evening I read on the Soulumination Blog that Children's Hospital had called, there was a baby in the final hours of her life and the family would like to have a photographer come, she was there a short time later.
I can't tell you how important these pictures have become to me, you don't typically take pictures during intimately painful times but I am so thankful to have these moments - they serve as a reminder, of where we've been and how far we've come.
The mailing I am helping on is for Souluminations 6th Annual Artists' Holiday Sale, I have shared the information below. You can also find out more about them at http://www.soulumination.org/
Kurt Smith:
Tara Clark:
Lynette Huffman Johnson:
Michelle Enbo:
Soulumination Artists' Holiday Sale Info:
Wednesday, October 19, 2011
23 Months Old, 9 Months Post Transplant
Oh my Georgia girl,
It's incredible to think that one year ago you'd just started chemotherapy, nine months ago you received a bone marrow transplant and today we started our day with a running around outside and ended it with the tickle monster.
You are changing daily it seems, putting more words together and noticing everything. You are working hard on being two and all that comes along with it. You do your best to stretch out our bedtime routine as long as possible, we read books, talk about our day, go through who is already ni-night... you ask Blake? Yes, Georgia, Blake is ni-night, Nah? Yep, Nah is too... we go through all of our family members, some friends and a few of the neighbor kids too. Just when I am feeling frustrated you start kissing my entire face, complete with the "muah" sound - I love it. As you become more skilled at pushing your limits (and mine) I am continually reminded how lucky I feel and how grateful I am. I love you so much my girl, I can't wait for the adventures that lie ahead.
It's incredible to think that one year ago you'd just started chemotherapy, nine months ago you received a bone marrow transplant and today we started our day with a running around outside and ended it with the tickle monster.
You are changing daily it seems, putting more words together and noticing everything. You are working hard on being two and all that comes along with it. You do your best to stretch out our bedtime routine as long as possible, we read books, talk about our day, go through who is already ni-night... you ask Blake? Yes, Georgia, Blake is ni-night, Nah? Yep, Nah is too... we go through all of our family members, some friends and a few of the neighbor kids too. Just when I am feeling frustrated you start kissing my entire face, complete with the "muah" sound - I love it. As you become more skilled at pushing your limits (and mine) I am continually reminded how lucky I feel and how grateful I am. I love you so much my girl, I can't wait for the adventures that lie ahead.
23 Months Old!
One of your favorite activities.. drawing
My little cowgirl
Here are a few videos from the past month:
"Hats & Books"
Walking in daddy's shoes
The tickle monster...
Friday, October 14, 2011
The Pumpkin Patch
Last year I looked at pictures of so many friends and their cute kids at the pumpkin patch, something I had been so excited to do. Georgia was inpatient and not allowed to leave so her first Halloween was spent inside the walls of Children's Hospital - no pumpkin patch for us. Needless to say I was pretty excited to take her this year - yesterday was a beautiful day so we headed out in search of our perfect pumpkins.
Ok, I think I'll take this one...
Yep, this one too..
Wait...
This is the one!
Time to head out..
One tired pumpkin
Day +267
Monday morning I woke up about three seconds before Georgia threw up all over both of us, that is how this challenging week began. I got us cleaned up and quickly checked online to see if there had been any update on a kiddo we spent some time with inpatient - Cody's mom had posted the night before that he wasn't doing well.. then I read the words, Cody let go and went to heaven, I was instantly in tears.
Most people who know me well know that I am a sensitive person, at times to a fault. I allowed myself a few tears for Cody and his family then looked at Georgia, I thought to myself, suck it up - we have clinic today.
This process has hardened me, I want to grieve for these families but what I do instead is allow a moment or two of sadness, send them love and strength then I have to move on. I have to stay focused on my child and overcoming the challenges that lie in front of our family - this is a very odd place for me.
Georgia's clinic appointment went well, not only did we get to see our friends Hunter and Mia, Georgia's labs looked great after finishing our first steroid taper and her weight was up! After talking with the dietitian and doctor it was decided that we'd pull back 25% on her NG feeds to hopefully stimulate more of an appetite and we would begin a taper of the second steroid.
By bedtime both Georgia and I were exhausted and looking forward to daddy coming home the next day. I laid down with Georgia and thought she was asleep only to have her suddenly start crying.. I turned on the light, she'd pulled part of her NG tube out.. I stopped the pump, was holding her arms down with one hand as she was screaming trying to gently push the tube back down with the other hand.. it didn't work. Georgia was so upset and flailing that she managed to push my hand away and in turn pulled the rest of the tube out - damn. As I tried to console a very upset little girl I could only think of one thing - this time she won't be sedated when it goes in.
The next day I called the clinic to let them know what had happened, they said to come in at 3pm to have it replaced. I asked if she could have something to relax her, to perhaps make the process less traumatic - the quick and curt answer was no, we don't do that. I said, I understand that isn't typically what you do but she was hysterical when it came out so I can only imagine how things will go putting it back in.. more push back, then finally I was told the nurse would talk with our doctor. I knew Georgia couldn't be sedated but thought they would certainly give her something if I was adamant about it - there is almost never push back when you're inpatient why is this so different? We arrived and as soon as the nurse called our name to come back she said Georgia would not be getting anything.. this lead to a conversation that had me saying things like "what difference does it make to you" and "I understand that you do this daily, Georgia doesn't".. we went round and round until I thought I might literally explode. Instead, I took a deep breath and asked the nurse to walk me through how this was going to go. I get it, replacing an NG tube isn't a big deal in the world of curing cancer, but in the world of Georgia it is a traumatic event which she doesn't understand. I think the people working in this world are good at what they do but become highly desensitized to how big the little things can be. The NG replacement happened, I held her, she was scared and upset and we hope that we will never have to do that again.
With a lousy couple of days behind us Brian and I took Georgia to enjoy some time at the park.
Most people who know me well know that I am a sensitive person, at times to a fault. I allowed myself a few tears for Cody and his family then looked at Georgia, I thought to myself, suck it up - we have clinic today.
This process has hardened me, I want to grieve for these families but what I do instead is allow a moment or two of sadness, send them love and strength then I have to move on. I have to stay focused on my child and overcoming the challenges that lie in front of our family - this is a very odd place for me.
Georgia's clinic appointment went well, not only did we get to see our friends Hunter and Mia, Georgia's labs looked great after finishing our first steroid taper and her weight was up! After talking with the dietitian and doctor it was decided that we'd pull back 25% on her NG feeds to hopefully stimulate more of an appetite and we would begin a taper of the second steroid.
By bedtime both Georgia and I were exhausted and looking forward to daddy coming home the next day. I laid down with Georgia and thought she was asleep only to have her suddenly start crying.. I turned on the light, she'd pulled part of her NG tube out.. I stopped the pump, was holding her arms down with one hand as she was screaming trying to gently push the tube back down with the other hand.. it didn't work. Georgia was so upset and flailing that she managed to push my hand away and in turn pulled the rest of the tube out - damn. As I tried to console a very upset little girl I could only think of one thing - this time she won't be sedated when it goes in.
The next day I called the clinic to let them know what had happened, they said to come in at 3pm to have it replaced. I asked if she could have something to relax her, to perhaps make the process less traumatic - the quick and curt answer was no, we don't do that. I said, I understand that isn't typically what you do but she was hysterical when it came out so I can only imagine how things will go putting it back in.. more push back, then finally I was told the nurse would talk with our doctor. I knew Georgia couldn't be sedated but thought they would certainly give her something if I was adamant about it - there is almost never push back when you're inpatient why is this so different? We arrived and as soon as the nurse called our name to come back she said Georgia would not be getting anything.. this lead to a conversation that had me saying things like "what difference does it make to you" and "I understand that you do this daily, Georgia doesn't".. we went round and round until I thought I might literally explode. Instead, I took a deep breath and asked the nurse to walk me through how this was going to go. I get it, replacing an NG tube isn't a big deal in the world of curing cancer, but in the world of Georgia it is a traumatic event which she doesn't understand. I think the people working in this world are good at what they do but become highly desensitized to how big the little things can be. The NG replacement happened, I held her, she was scared and upset and we hope that we will never have to do that again.
With a lousy couple of days behind us Brian and I took Georgia to enjoy some time at the park.
Tuesday, October 4, 2011
One Year Ago
One year ago I never saw the train coming, the one that completely derailed life as I knew it. It was a Monday morning and Georgia was still cranky, bothered by what I thought was a pulled muscle in her leg. I called our pediatrician and she said to come in, it was clear once she looked at her leg that something was going on. We were sent to Children's Hospital for a quick x-ray to rule out a hairline fracture - Georgia was learning to pull up on things so although unlikely, it was possible that she'd injured it in some way.
I remember talking to Brian on the drive over, he asked if he should meet us there, I said not to bother, we'd be on our way home by the time he got there. After the x-ray we waited for a bit then a man came into the waiting room and sat down next to me, he was the radiologist who'd reviewed Georgia's x-ray. He said there was a mass on her leg, that it was either an infection or a tumor, he said someone would be coming to walk us over to the emergency department... I will never forget the feeling of sheer terror that washed over me. It quickly became clear that this wasn't an infection, and just like that, Brian and I were meeting an oncologist and talking about cancer - Georgia was 10 months old.
The past year has been unthinkable, watching Georgia go through test after test, sedation after sedation - her information was sent to experts in San Francisco, Germany and studied at Harvard all to land in a place where she needed chemotherapy and a bone marrow transplant to survive. The things Georgia has endured are incomprehensible - her little body poisoned again and again in a effort to make her well. Watching nurses "suit up" in a gown, gloves and mask that covers their entire face as to not get a drop on them of what they are injecting into my baby. Even a year later I still have moments when I can't believe this is our story. Georgia is still on immune suppression, steroids, antibiotics and has a feeding tube, this process is far from over. Through every minute of this journey Georgia has been so brave, so patient and so resilient - I can't even put into words the love I have for my child.
I will never know the reason why this has happened but I feel a strong need to put purpose to it. I'm different now, and will never be the person I was one year and one day ago. The things I've seen in the past year have changed how I see the world, how I am in it and what is important to me.
I didn't know Ben, and I've never met the Towne Family but the work their foundation is doing is incredible. The idea that we could have been delivered the same news and Georgia's treatment would have only given her the side effects of having a cold for a few days seems impossible but the work that Dr. Michael Jensen is doing says it isn't. I have asked our doctors at Children's what is the best way to directly support the work that Dr. Jensen and the Center for Childhood Cancer Research is doing - how do we make what seems impossible, possible - the resounding answer is to support the Ben Towne Foundation as 100% of it's proceeds go to Dr. Jensen's work. I am asking you to get behind this foundation - spread the word, donate money, start a company matching program, do what ever you can to change how pediatric cancer is treated, help me put purpose to what Georgia has had to endure. Give in honor of Georgia, the friends who are winning their battle, the friends who are still fighting.. give in honor of those who are losing their battle and for those who have already lost. The suffering that I have seen in the past year can't continue, we have to make a difference.
Here is a look back at our journey and the events of the past year:
http://www.youtube.com/watch?v=31pgyYj2s88
Here is where you can go to find out more about the Ben Towne Foundation:
http://bentownefoundation.org/
I remember talking to Brian on the drive over, he asked if he should meet us there, I said not to bother, we'd be on our way home by the time he got there. After the x-ray we waited for a bit then a man came into the waiting room and sat down next to me, he was the radiologist who'd reviewed Georgia's x-ray. He said there was a mass on her leg, that it was either an infection or a tumor, he said someone would be coming to walk us over to the emergency department... I will never forget the feeling of sheer terror that washed over me. It quickly became clear that this wasn't an infection, and just like that, Brian and I were meeting an oncologist and talking about cancer - Georgia was 10 months old.
The past year has been unthinkable, watching Georgia go through test after test, sedation after sedation - her information was sent to experts in San Francisco, Germany and studied at Harvard all to land in a place where she needed chemotherapy and a bone marrow transplant to survive. The things Georgia has endured are incomprehensible - her little body poisoned again and again in a effort to make her well. Watching nurses "suit up" in a gown, gloves and mask that covers their entire face as to not get a drop on them of what they are injecting into my baby. Even a year later I still have moments when I can't believe this is our story. Georgia is still on immune suppression, steroids, antibiotics and has a feeding tube, this process is far from over. Through every minute of this journey Georgia has been so brave, so patient and so resilient - I can't even put into words the love I have for my child.
I will never know the reason why this has happened but I feel a strong need to put purpose to it. I'm different now, and will never be the person I was one year and one day ago. The things I've seen in the past year have changed how I see the world, how I am in it and what is important to me.
I didn't know Ben, and I've never met the Towne Family but the work their foundation is doing is incredible. The idea that we could have been delivered the same news and Georgia's treatment would have only given her the side effects of having a cold for a few days seems impossible but the work that Dr. Michael Jensen is doing says it isn't. I have asked our doctors at Children's what is the best way to directly support the work that Dr. Jensen and the Center for Childhood Cancer Research is doing - how do we make what seems impossible, possible - the resounding answer is to support the Ben Towne Foundation as 100% of it's proceeds go to Dr. Jensen's work. I am asking you to get behind this foundation - spread the word, donate money, start a company matching program, do what ever you can to change how pediatric cancer is treated, help me put purpose to what Georgia has had to endure. Give in honor of Georgia, the friends who are winning their battle, the friends who are still fighting.. give in honor of those who are losing their battle and for those who have already lost. The suffering that I have seen in the past year can't continue, we have to make a difference.
Here is a look back at our journey and the events of the past year:
http://www.youtube.com/watch?
Here is where you can go to find out more about the Ben Towne Foundation:
http://bentownefoundation.org/
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