I'll keep this short and sweet today...
The oncologist called today. I emailed him 20 minutes earlier to inquire about the results of Brady urine test.
Both HVA and VMA are well within normal limits! This is the first time since diagnosis that both levels have been normal. Last time one of them was still one point above. If you remember these are the urine markers for NB. What a great way to start the Christmas season!!!
This gives us a little bit more confidence that things will look okay for next months scans, but of course you never know with Neuroblastoma.
Something to be praying about: There is a spot on Brady's back, to the right of his spine way up high on his back, where a noticable area has started protruding. It's hard to explain, but unfortunately might indicate that some spinal deformity is starting. If you remember, Brady's initial spinal surgery last Januray left his spine at risk for deformity. We have a follow up appointment with the orthopedic doctor in January, so we will know more then. We are praying that God will keep Brady's spine straight and that he will continue to grow big and strong:)
Monday, December 7, 2009
Sunday, December 6, 2009
December Weekend #1
We survived the first weekend of the Christmas season! Busy, busy, busy, but fun!
Just imagine, all 6 of us, crammed in the trusty blue mini van for 4 hours today! The kids were really good today, well until the ride home. We spent all afternoon at Matt's cousin's home in Penn Yan. We had a lovely Christmas celebration with lots of kids running around and playing. I was very proud of my brood who interacted quite appropriately, weren't shy at all, and even managed to say thank you when prompted. We knew we couldn't make it home without stopping to feed the kids, so we hit the Mc Donalds in Canandaigua. At this point, Allie was in pajamas, the big kids were all still dressed up, so I'm sure we looked pretty strange. There we were with our 4 high chairs, eating chicken nuggets together. We we got back on the road it was certainly an annoying ride home. Brady whining, Cara crying, Eli snoozing, and Matt and I wondering when Allie would throw up! Great news---she didn't throw up today! She slept almost the whole way there, she started to not look so good with about 20 minutes left, but we made it just in time. Then it was dark on the way home, and somehow I think not being able to see things out of the window helped her vestibular system not get out of whack.
This week brings baking, wrapping, MOPS party, a dinner with a great friend, and maybe a few other adventures. I LOVE Christmas time!
Just imagine, all 6 of us, crammed in the trusty blue mini van for 4 hours today! The kids were really good today, well until the ride home. We spent all afternoon at Matt's cousin's home in Penn Yan. We had a lovely Christmas celebration with lots of kids running around and playing. I was very proud of my brood who interacted quite appropriately, weren't shy at all, and even managed to say thank you when prompted. We knew we couldn't make it home without stopping to feed the kids, so we hit the Mc Donalds in Canandaigua. At this point, Allie was in pajamas, the big kids were all still dressed up, so I'm sure we looked pretty strange. There we were with our 4 high chairs, eating chicken nuggets together. We we got back on the road it was certainly an annoying ride home. Brady whining, Cara crying, Eli snoozing, and Matt and I wondering when Allie would throw up! Great news---she didn't throw up today! She slept almost the whole way there, she started to not look so good with about 20 minutes left, but we made it just in time. Then it was dark on the way home, and somehow I think not being able to see things out of the window helped her vestibular system not get out of whack.
This week brings baking, wrapping, MOPS party, a dinner with a great friend, and maybe a few other adventures. I LOVE Christmas time!
Saturday, December 5, 2009
What's in a Year
What a difference a year makes. As we drove to Matt's company Christmas party this evening, I couldn't help but reminisce. One year ago...
Allie was just a few weeks old. I remember still being in pain from my c-section, worried about what clothes I would fit into, worried about leaving her for the evening.
Brady was a 19 month old boy who wasn't walking. He was having trouble pulling up like he used to be able to do. He was pretty clingy and the feeling in my heart that something was wrong started nagging me more and more.
We were only weeks away from the appointment with the developmental specialist where we would find out that Brady had cerebral palsy and would never gain typical motor skills, and might never walk. As you know this diagnosis was wrong, and as God knew, there was something much more serious happening in his tiny body.
One year...I'm sure I'll be talking a lot in the next months about where we were one year ago. I guess I do this because it is somewhat therapeutic for me. I can't say that the events in the last year haven't traumatized me in some way, they have. BUt I also want to remember because I want to share the beauty that God has made from the ashes that covered our lives one year ago.
There is a beautiful passage from scripture in Isaiah 61 about how God wants to restore our broken hearts, bring us back to a place of peace when we are hurting, and comfort us in times of despair. So when I look back at our year and describe what we were experiencing and feeling, I hope that I am showing you how God has done all of those things for our family.
Having a child diagnosed with a disease that is more often deadly than survivable is the scariest thing that has ever happened to me. But seeing the beauty God has created in our lives since that day is the most remarkable thing that I've ever experienced. We all have a new appreciation for life, a stronger connection to God and each other, and certainly a powerful story to tell.
Isaiah 61:3
To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.”
Allie was just a few weeks old. I remember still being in pain from my c-section, worried about what clothes I would fit into, worried about leaving her for the evening.
Brady was a 19 month old boy who wasn't walking. He was having trouble pulling up like he used to be able to do. He was pretty clingy and the feeling in my heart that something was wrong started nagging me more and more.
We were only weeks away from the appointment with the developmental specialist where we would find out that Brady had cerebral palsy and would never gain typical motor skills, and might never walk. As you know this diagnosis was wrong, and as God knew, there was something much more serious happening in his tiny body.
One year...I'm sure I'll be talking a lot in the next months about where we were one year ago. I guess I do this because it is somewhat therapeutic for me. I can't say that the events in the last year haven't traumatized me in some way, they have. BUt I also want to remember because I want to share the beauty that God has made from the ashes that covered our lives one year ago.
There is a beautiful passage from scripture in Isaiah 61 about how God wants to restore our broken hearts, bring us back to a place of peace when we are hurting, and comfort us in times of despair. So when I look back at our year and describe what we were experiencing and feeling, I hope that I am showing you how God has done all of those things for our family.
Having a child diagnosed with a disease that is more often deadly than survivable is the scariest thing that has ever happened to me. But seeing the beauty God has created in our lives since that day is the most remarkable thing that I've ever experienced. We all have a new appreciation for life, a stronger connection to God and each other, and certainly a powerful story to tell.
Isaiah 61:3
To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.”
Friday, December 4, 2009
Let the Busy Season Begin!
It's officially the first weekend of the Christmas season! Is your calendar as crazy as mine? This weekend includes shopping, cooking, baking, Matt's company party, church, and a get together with the Williams side of the family. I've been doing a lot of shopping in the evening which means I'm extra tired all day long!
With the bustle of this season, it's so easy to get caught up in it all and forget the focus that should be in our hearts. I find that my children are wonderful reminders for me about the true reason for celebration at Christmas. Sure they are SO intrigued by Santa this year, the love looking at the tree, and they are getting excited about presents. But there have been so many special moments when they climb into my lap with one of their Christmas story books and want me to read it to them. It is so precious to share with them the story of Jesus' birth. They just adore the story of Mary and Joseph, Jesus being born among the animals, and how the wisemen followed the star to Bethlehem. It's wonderful to see God opening their hearts to want to learn the most important story ever told!
Amidst the craziness, I pray that you'll find quiet moments to reflect on the importance of the Christmas season.
With the bustle of this season, it's so easy to get caught up in it all and forget the focus that should be in our hearts. I find that my children are wonderful reminders for me about the true reason for celebration at Christmas. Sure they are SO intrigued by Santa this year, the love looking at the tree, and they are getting excited about presents. But there have been so many special moments when they climb into my lap with one of their Christmas story books and want me to read it to them. It is so precious to share with them the story of Jesus' birth. They just adore the story of Mary and Joseph, Jesus being born among the animals, and how the wisemen followed the star to Bethlehem. It's wonderful to see God opening their hearts to want to learn the most important story ever told!
Amidst the craziness, I pray that you'll find quiet moments to reflect on the importance of the Christmas season.
Thursday, December 3, 2009
Pictures!
I want to say thank you to everyone who is reaching out to help Kyler Van Nocker and his family. I don’t think this family has a carepage, caringbridge site, or blog. Their story was first told by a local reporter in Philadelphia and is spreading on the web and on other pediatric cancer blogs. I did read today that Medicaid (the family must have picked up secondary insurance for Kyler) might have covered their first treatment. But the bottom line is, this family has depleted their savings and all assets to try and find a cure. Thank you to all who have given $1 to help this family during a time of unimaginable stress and grief.
It’s picture day! I’ve had some fantastic pictures to share with you. On Wednesday my mom and I took the kids to visit Santa at the mall. We have never done this before and of course the many different personalities among the kids made for an interesting time!
When we got to the mall, Santa wasn’t there yet. Don’t they know this mother went online, checked the Santa times at the mall, and arrived at 11:08 to see Santa who was supposed to start at 11? We had some time to waste so we took the kids to Friendly’s for lunch. They were SO well behaved. Many people came up to us to tell us how wonderful they were throughout the meal. I was a proud momma:)
Finally, we saw Santa sitting in front of his house in the distance. It turned out to be perfect timing, as their were no other kids in line. We had him all to ourselves for about 30 minutes! After I politely declined the photo package for $45.00, I took out the camera and got some great shots!
Here is Mr.. Friendly Eli who walked right up and made friends with Santa instantly. Throughout the whole visit he was mumbling under his breath about “trains, cars, Snuffy, big rigs, puzzles,….”
This Santa was the kindest, most gentle and patient man! He called each of my kids by name after hearing me say their names one time.
So that was Eli, now here are the other two scaredy-cats who huddled together back by the photographers. They look like they are in a lineup!
So, I decided to plunk Allie on Santa’s lap. I present the classic 1 year old with Santa picture….
Santa had this bouncy ball that he called his Snow Ball. It really helped break the ice with Brady and Cara.
This is as close as Brady ever got to Santa. Of course, he has nothing but rave reviews when you ask him about his Santa experience!
And here is my Cara with one of the most lovely Santa pictures I’ve ever seen:)
I decided to try and squeeze all 4 monkeys in the tub tonight, and boy, I’m SO glad I did. If only I hadn’t just sent my Christmas cards out today, I seriously would have found a way for these pictures into a Christmas greeting!
Rub a dub dub, my four sweeties in the tub!
Wednesday, December 2, 2009
Kyler
My plan for a post tonight involving our visit to see Santa has been put on the back burner. I had this feeling I needed to check in on a child whose carepage I hadn't read in a long time. When I clicked onto the site, I was shocked to read about another sweet boy named Kyler. I cut and pasted the following message from another site:
Dear Friends,
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
The Stone:
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
The Ripple:
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
The Plan:
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
_________________________________________________
From Megan: I know that this time of year we are getting hit in all directions to donate to SO many charities. A lot of times you don't know where your money goes, or how much of it is actually used to meet a specific need versus administrative costs. I can tell you that a small donation to this family will be a meaningful and powerful act of love that will be used to help save this child's life. There are SO many children who are alive today after having received 3F8 treatment. It frustrates me that the FDA hasn't approved this, but the main reason is because only 4% of money allotted by our government to cancer research goes to pediatric cancer!!! Only 4%!!! That means that 96% of cancer funding for research and life saving treatments is for adults! Obviously both are more than worthy causes, but the disparity has an obvious effect on the number of apporved treatments available for children.
If you are willing to give, even just $1, please do. I would love for you to leave us a comment and let us know! Thank you SO very much!
Dear Friends,
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
The Stone:
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
The Ripple:
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
The Plan:
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
_________________________________________________
From Megan: I know that this time of year we are getting hit in all directions to donate to SO many charities. A lot of times you don't know where your money goes, or how much of it is actually used to meet a specific need versus administrative costs. I can tell you that a small donation to this family will be a meaningful and powerful act of love that will be used to help save this child's life. There are SO many children who are alive today after having received 3F8 treatment. It frustrates me that the FDA hasn't approved this, but the main reason is because only 4% of money allotted by our government to cancer research goes to pediatric cancer!!! Only 4%!!! That means that 96% of cancer funding for research and life saving treatments is for adults! Obviously both are more than worthy causes, but the disparity has an obvious effect on the number of apporved treatments available for children.
If you are willing to give, even just $1, please do. I would love for you to leave us a comment and let us know! Thank you SO very much!
Tuesday, December 1, 2009
Nothing Much Tuesday
Today was a "nothing much" sort of day, so my post will be pretty random tonight.
I delivered "the sample" to the hospital today without any problem. I will be emailing our doctor at the beginning of next week to check on results. Of course clear results will give us a big sigh of relief, well at least until next month's scans.
Matt sprained his ankle last night playing basketball. Mr. Tough Guy doesn't complain much and tells me it feels "great," but looking at the swelling and bruising, I'm sure it hurts more than he lets on.
Allie got another tooth today which brings her total to 5! She is a drooly mess these days, but really is a good girl about it.
We had our first dinner tonight using the beef that we purchased last week. We split 1/2 a cow with Matt's parents. It was raised organically and slaughtered locally. We have a ton of beef in our freezer which we will use all winter. Tonight's menu was beef stew with veggies...yum!
The first measurable snow fell today. I have to say it was really pretty to wake up to the ground, trees, and rooftops covered in snow. Of course the kids saw this and thought they should spend the rest of the day wearing their mittens in the house...goofballs!
That is it for my nothing much day! I prefer these sort of days to the chaotic, crisis-filled ones:)
I delivered "the sample" to the hospital today without any problem. I will be emailing our doctor at the beginning of next week to check on results. Of course clear results will give us a big sigh of relief, well at least until next month's scans.
Matt sprained his ankle last night playing basketball. Mr. Tough Guy doesn't complain much and tells me it feels "great," but looking at the swelling and bruising, I'm sure it hurts more than he lets on.
Allie got another tooth today which brings her total to 5! She is a drooly mess these days, but really is a good girl about it.
We had our first dinner tonight using the beef that we purchased last week. We split 1/2 a cow with Matt's parents. It was raised organically and slaughtered locally. We have a ton of beef in our freezer which we will use all winter. Tonight's menu was beef stew with veggies...yum!
The first measurable snow fell today. I have to say it was really pretty to wake up to the ground, trees, and rooftops covered in snow. Of course the kids saw this and thought they should spend the rest of the day wearing their mittens in the house...goofballs!
That is it for my nothing much day! I prefer these sort of days to the chaotic, crisis-filled ones:)
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