Georgia is quite good at saying "Go! Fight!!Win!!!" This is also known as the Handsaker family motto!
I hope everyone has a safe and fun Halloween!
Wednesday, October 31, 2012
Happy Halloween
The last few years Halloween has not been, shall we say a favorite holiday of mine. Georgia's first Halloween was spent in the hospital, having just finished a round of chemo. Her second was started with a clinic visit to Children's then getting very sick which resulted in being admitted to the hospital for GVHD. The day is young so I am knocking on wood right now but I have high hopes for this year. We're going to Georgia's first Halloween party tonight at Auntie Leslie's house!
Georgia is quite good at saying "Go! Fight!!Win!!!" This is also known as the Handsaker family motto!
I hope everyone has a safe and fun Halloween!
Georgia is quite good at saying "Go! Fight!!Win!!!" This is also known as the Handsaker family motto!
I hope everyone has a safe and fun Halloween!
Monday, October 29, 2012
Twenty Weeks
Yesterday I hit 20 weeks, I can't believe I'm half way through my pregnancy! Today I had my 18-20 week ultrasound. We'd intended to have someone watch Georgia but things didn't come together so all three of us went to the appointment. In the end it was really fun to have Georgia there, she watched the screen, we pointed out things and she smiled. At one point she asked why I was taking a nap... lying down in a dimly lit room. The printer broke after printing two pictures so we were sent home with a CD of pictures and also a very short video clip of the baby swallowing - it's all so incredible. See you in March baby!
Profile
Foot
If you watch the mouth you can see the baby swallowing and below that you'll see his or her heart beating.
Go Team!
Last week we visited the SCCA for a monthly appointment, something I'd been anticipating for weeks. I always try and gauge how her labs are based on the demeanor of the people we meet with before we see our doctor and PA, it's not a trusted method but one that's hard to break.
First up, the pharmacist, there was a lot of crossing out on Georgia's med sheet, she is now only on supplements which feels fantastic! Next up, the dietitian, it's amazing what a difference a year makes... a year ago Georgia had a feeding tube, last week we were discussing how she is such a good eater. I used to dread the walk to get her height and weight, now I find myself looking forward to hearing the results. The scale doesn't lie, a reading of 13.6kg had everyone smiling, she has jumped from the 25th to the 50th percentile for weight in just about two months. Next she stood against the height measurement, feet together, standing tall, chin up... the dietitian looked at the number, then at her chart and said, "wow, really?... let's measure again to make sure this is right." Sure enough, Georgia has grown 3cm since our last visit and jumped up from the 10-25th to the 25-50th percentile for height! We're regaining some ground and Georgia sits nicely on a chart that is compared to the average (almost) three year old.
Then the time had come, in walked our PA and doctor, both smiling as came in... Georgia wore her Halloween costume to her appointment, it lightened the mood and brought some much needed cheer to the transplant floor of the SCCA. They both remarked at how Georgia isn't a baby any more, she's a little girl and looks great - something her mother never gets tired of hearing.
The labs looked fine and the topic of skin quickly came to the forefront. Her transplant doctor believes there is a good chance the various spots, some "JXG-like" some not, are mild skin GVHD. He said that she is doing really well seven weeks off of immune suppression but that her immune system is still finding a balance and this could very well be the result. His feeling is that her skin needs to be watched but unless we see spots that come, stay and grow there is no need to do a biopsy and wouldn't treat mild skin GVHD. So for now, we're off the hook until late November for our Children's appointment, assuming all goes well then we will be back at the SCCA in January for Georgia's two year post transplant work up, slow and steady, we can do this.
Three cheers for a good appointment!
First up, the pharmacist, there was a lot of crossing out on Georgia's med sheet, she is now only on supplements which feels fantastic! Next up, the dietitian, it's amazing what a difference a year makes... a year ago Georgia had a feeding tube, last week we were discussing how she is such a good eater. I used to dread the walk to get her height and weight, now I find myself looking forward to hearing the results. The scale doesn't lie, a reading of 13.6kg had everyone smiling, she has jumped from the 25th to the 50th percentile for weight in just about two months. Next she stood against the height measurement, feet together, standing tall, chin up... the dietitian looked at the number, then at her chart and said, "wow, really?... let's measure again to make sure this is right." Sure enough, Georgia has grown 3cm since our last visit and jumped up from the 10-25th to the 25-50th percentile for height! We're regaining some ground and Georgia sits nicely on a chart that is compared to the average (almost) three year old.
Then the time had come, in walked our PA and doctor, both smiling as came in... Georgia wore her Halloween costume to her appointment, it lightened the mood and brought some much needed cheer to the transplant floor of the SCCA. They both remarked at how Georgia isn't a baby any more, she's a little girl and looks great - something her mother never gets tired of hearing.
The labs looked fine and the topic of skin quickly came to the forefront. Her transplant doctor believes there is a good chance the various spots, some "JXG-like" some not, are mild skin GVHD. He said that she is doing really well seven weeks off of immune suppression but that her immune system is still finding a balance and this could very well be the result. His feeling is that her skin needs to be watched but unless we see spots that come, stay and grow there is no need to do a biopsy and wouldn't treat mild skin GVHD. So for now, we're off the hook until late November for our Children's appointment, assuming all goes well then we will be back at the SCCA in January for Georgia's two year post transplant work up, slow and steady, we can do this.
Three cheers for a good appointment!
Friday, October 19, 2012
21 Months Post Transplant
Georgia I can hardly believe that in one month you will be three! You continue to excel in the talking category and we are without a doubt in the "why" phase... "why mommy, why?" Here are a few other things you've said lately:
Recently we stopped by Target, immediately upon walking in the door you spotted the teen girl clothes, went over to a shirt and said, "oh, beautiful, this is beautiful." I laughed to myself and told you it was for big girls, you said "when I get bigger mama, I wanna wear this." "Ok, Georgia." As we walked away you passed by another shirt, touched it and said "beautiful" as if you were in Tiffany's admiring diamonds.
A couple of days ago we were at the park, you were across the playground and yelled "hey Al" when you wanted to get my attention.
With the onset of cold and flu season we've already had several cancelled play dates. I do my best not to tell you about any plans we have until the day of but sometimes things still get cancelled. We talk about how it feels when we aren't able to see friends, and the words frustrated and disappointed often come up. At the end of the day, it makes me sad that you can't do everything you want to do but I think it's healthy that you are able to express how you feel.
Since plans are always tentative I try and have ideas for projects or places to visit in mind, so far they seem to be keeping you happy, I'll often hear "that's a great idea mama!"
We talk a lot about the new baby that's coming, you're always quick to ask if you can help with the baby, you want to feed him or her a bottle and do lots of snuggling. The four baby dolls that you sleep with tells me that you are going to be a great big sister.
With the talk about baby, daddy told you that you'll be a big sister and more grown up when the baby comes, you said "I not want to be a grown up, I want to be a kid!"
Conversations have started to look like this and start with "so mama..." I can only imagine what the teen years will be like!
With fall upon us I am trying to get us outside when it's not raining to enjoy the colors, here are a few pictures from the park last week:
Being the helper that you are, you wanted your own rake to help with the leaves. This is the first year you've been able to play in the leaves so we took full advantage a couple of days ago. Daddy kept raking up the leaves then throwing them around for you to run through, he said, "I am creating more work for myself but it's too fun to care." You loved every minute.
Recently we stopped by Target, immediately upon walking in the door you spotted the teen girl clothes, went over to a shirt and said, "oh, beautiful, this is beautiful." I laughed to myself and told you it was for big girls, you said "when I get bigger mama, I wanna wear this." "Ok, Georgia." As we walked away you passed by another shirt, touched it and said "beautiful" as if you were in Tiffany's admiring diamonds.
A couple of days ago we were at the park, you were across the playground and yelled "hey Al" when you wanted to get my attention.
With the onset of cold and flu season we've already had several cancelled play dates. I do my best not to tell you about any plans we have until the day of but sometimes things still get cancelled. We talk about how it feels when we aren't able to see friends, and the words frustrated and disappointed often come up. At the end of the day, it makes me sad that you can't do everything you want to do but I think it's healthy that you are able to express how you feel.
Since plans are always tentative I try and have ideas for projects or places to visit in mind, so far they seem to be keeping you happy, I'll often hear "that's a great idea mama!"
We talk a lot about the new baby that's coming, you're always quick to ask if you can help with the baby, you want to feed him or her a bottle and do lots of snuggling. The four baby dolls that you sleep with tells me that you are going to be a great big sister.
With the talk about baby, daddy told you that you'll be a big sister and more grown up when the baby comes, you said "I not want to be a grown up, I want to be a kid!"
Conversations have started to look like this and start with "so mama..." I can only imagine what the teen years will be like!
With fall upon us I am trying to get us outside when it's not raining to enjoy the colors, here are a few pictures from the park last week:
Being the helper that you are, you wanted your own rake to help with the leaves. This is the first year you've been able to play in the leaves so we took full advantage a couple of days ago. Daddy kept raking up the leaves then throwing them around for you to run through, he said, "I am creating more work for myself but it's too fun to care." You loved every minute.
Sunday, October 14, 2012
Skin Deep, Part 2
I realize I haven't given much of an update about Georgia's skin, to be honest there isn't much of one. After our trip to the dermatologist we've certainly been more on edge but after several conversations, the decision at this point has been made not to do a biopsy.
I talked with our oncologist and her feeling is that even if this is JXG that Georgia's lab work outweighs anything that may be on her skin. She said, with monthly labs and appointments, we're watching her like a hawk. She did contact the woman who is considered the "world expert" on JMML to see if she'd ever heard of a recurrence and if that was or was not linked to a recurrence of disease. Two other JMML doctors weighed in, and the only time they had seen a recurrence was when the patient had a genetic condition called NF1, something Georgia has tested negative for.
At this point we are trying to stay positive and looking forward to putting our next SCCA appointment behind us. We've got another week then it's time for labs and appointments, although several of the spots on her skin have been there for months, this appointment seems to carry more weight than the last few.
As always, positive thoughts, vibes and prayers are welcome and appreciated.
I talked with our oncologist and her feeling is that even if this is JXG that Georgia's lab work outweighs anything that may be on her skin. She said, with monthly labs and appointments, we're watching her like a hawk. She did contact the woman who is considered the "world expert" on JMML to see if she'd ever heard of a recurrence and if that was or was not linked to a recurrence of disease. Two other JMML doctors weighed in, and the only time they had seen a recurrence was when the patient had a genetic condition called NF1, something Georgia has tested negative for.
At this point we are trying to stay positive and looking forward to putting our next SCCA appointment behind us. We've got another week then it's time for labs and appointments, although several of the spots on her skin have been there for months, this appointment seems to carry more weight than the last few.
As always, positive thoughts, vibes and prayers are welcome and appreciated.
Pumpkin Patch
On Friday we hit up pumpkin patch in search of our perfect pumpkins. We drove out to Fall City Farms, the same great place we went last year. Georgia got right to work, she picked out a wheel barrow and started filling it with pumpkins... tiny little pumpkins. We told her she could pick bigger ones but she liked the ones that were easy to carry.
Thinking bigger
The rain at the end of our trip didn't spoil the fun!
Monday, October 8, 2012
Promotion
We are very excited to share that Georgia is getting a promotion.... in March, Georgia will become a big sister.
Thursday, October 4, 2012
Simple
Two years and one day ago life was fairly simple, I had a 10 month old baby, was trying to believe this parenting thing was coming together and although things weren't perfect, I thought I appreciated the life I had.
When you have a child, no one prepares you for the immediate shift your heart will take, once it had been an organ inside my body, but now it was most certainly residing on my sleeve. You want to feel like you are doing right by your baby, reading the right books, taking the right classes, and making sure they are thriving. When your baby is diagnosed with cancer all of that goes out the window-- suddenly you are doing your best to keep your head above water and can only watch, as life as you knew it crumbles away.
It would have been impossible to try and prepare myself for the ways our lives would change, the depth of fear I would feel and the dark places cancer would take us. Like it or not I'm a different person than I was two years and one day ago, I talk the talk and walk the walk of a cancer mom, something in the beginning of this journey I swore I would never do. Some of the people that know the most about me on this journey I have rarely seen outside of the walls of Children's Hospital. And although I have come to realize that we don't live on an island, that anyone's child can get cancer, I think some prefer to keep us there, believing it could never happen to them.
Our lives today are not simple, but despite the complexities I truly enjoy the simple joys of life, most of all watching my daughter grow into an incredible little girl.
With the anniversary of what was supposed to be a "quick x-ray" weighing on me I decided that we should get out of town, even for just a quick trip across the water. This morning we headed to Bainbridge Island and played at the beach and a park. We soaked up the sunshine, laughed and enjoyed the beautiful day, never once forgetting how grateful I am for this radiant face.
Monday, October 1, 2012
Light the Night
On Saturday evening Georgia and I headed over to Greenlake to check out Light the Night, a benefit put on by the Leukemia and Lymphoma Society. I heard about this event last year, people carrying lit balloons around Greenlake to bring light to the dark subject of cancer. I'd been planning to go for several weeks but with our recent dermatology visit weighing on me I thought maybe it would be good to stay far away from all things leukemia. In the end I decided to go, it was a beautiful night and I knew if it was too overwhelming we could leave at any point.
We arrived to a much larger event than I had anticipated, booths, balloons and lots of people. I spotted the Children's Hospital booth and began to make our way over, almost there, we bumped into a big Georgia supporter who we've met through Team in Training. Minutes later I was hugging Mia's mom and dad and telling her twin brother Noah how grown up he is! We saw nurses and staff from Children's, all remarking at how big Georgia has gotten.
My intention was to go and cheer on the walkers, quickly after arriving someone asked, "did Georgia get a white balloon? She has to have a white survivors balloon!" With a balloon in hand we decided to walk with the others. Shortly before the event began we saw Georgia's oncologist and her family, pictures were taken, hugs were given and it was time to walk.
It was such a great feeling to see these people who have been such a significant part of our lives, outside of the hospital, to talk about normal things, not cancer things. At one point our oncologist was pushing Georgia's stroller and offering to carry her if she got too heavy.
As much as I wish leukemia was not a part of our lives it was nice to spend a "normal" evening with people who totally get it. If we have to go through this, I am certainly grateful for all of the support this community offers.
At the end of the evening Noah decided he wanted to send the gold balloon he'd been carrying in memory of Mia up to her. I watched as his parents knelt down beside him, said a few words, he hugged the balloon, then let it go... it was truly a touching moment to witness.
We arrived to a much larger event than I had anticipated, booths, balloons and lots of people. I spotted the Children's Hospital booth and began to make our way over, almost there, we bumped into a big Georgia supporter who we've met through Team in Training. Minutes later I was hugging Mia's mom and dad and telling her twin brother Noah how grown up he is! We saw nurses and staff from Children's, all remarking at how big Georgia has gotten.
My intention was to go and cheer on the walkers, quickly after arriving someone asked, "did Georgia get a white balloon? She has to have a white survivors balloon!" With a balloon in hand we decided to walk with the others. Shortly before the event began we saw Georgia's oncologist and her family, pictures were taken, hugs were given and it was time to walk.
It was such a great feeling to see these people who have been such a significant part of our lives, outside of the hospital, to talk about normal things, not cancer things. At one point our oncologist was pushing Georgia's stroller and offering to carry her if she got too heavy.
As much as I wish leukemia was not a part of our lives it was nice to spend a "normal" evening with people who totally get it. If we have to go through this, I am certainly grateful for all of the support this community offers.
At the end of the evening Noah decided he wanted to send the gold balloon he'd been carrying in memory of Mia up to her. I watched as his parents knelt down beside him, said a few words, he hugged the balloon, then let it go... it was truly a touching moment to witness.
Georgia and Noah
Our beloved Dr. Pollard
Georgia re-hydrating at the finish
These two definitely lit up the night!
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