A boy died today. A boy I have seen up at the hospital, walking around, bald. He seemed pleasant enough. I didn't really get a chance to know him. My time there is fleeting unlike the many that are there for months and develop a deep bond. We have developed some too, but it is just interesting how many people just end up never really knowing each other there. I wish I could have known him. He was 13 years old friends!! Braveheart is 14. This boy looked full of life when I saw him in the hall talking with the nurses. He lost his battle with cancer. I don't know his whole story but I know he had a transplant. Why do I have to see so many sad cases lately??? Can I maintain hope in healing with all that surrounds me? Can I point the way to a Christ that loves us and is strong and supernatural?? I want to wake up now....I want to.....
Sunday, August 21, 2011
Saturday, August 20, 2011
"be still and kow that I am God"
I am really starting to hate my blog. I ran out of pics on Picasso and can't seem to delete any and I don't really know what I am doing and my counter is gone. It's crazy! My life is crazy! Everything is so surreal right now.
We got B's scans back and all looked good. Then the initial bone marrow and it looks good too!! I should be so happy and believe me I am so happy. I am praising God. But I do feel strange. Sometimes it feels like a dream. We have to fight this BK virus that has given him hemorrhagic cystitis. There is a weird sense of just resting..."be still and know that I am God". It is a good place to be because if we are to get out of this transplant, which is not my favorite thing to do but my only option we have left other than God just healing him done right now this minute which we still believe for every day, then God will simply have to direct every detail to do that. My mind cannot even conjure up any more ways that LITTLE 'OL ME can do it.
We got B's scans back and all looked good. Then the initial bone marrow and it looks good too!! I should be so happy and believe me I am so happy. I am praising God. But I do feel strange. Sometimes it feels like a dream. We have to fight this BK virus that has given him hemorrhagic cystitis. There is a weird sense of just resting..."be still and know that I am God". It is a good place to be because if we are to get out of this transplant, which is not my favorite thing to do but my only option we have left other than God just healing him done right now this minute which we still believe for every day, then God will simply have to direct every detail to do that. My mind cannot even conjure up any more ways that LITTLE 'OL ME can do it.
Saturday, August 6, 2011
2nd round at hospital
We are here on our second round of this mix of therapy. We will have these three chemo drugs for 5 days then go home. We had a good visit from the onc doc today. It seems like B is doing very well with this chemo. I hate giving him chemo, but there is no choice. This 'batch' has been better on him than any he has had before. We are on this. GOD has this one.
The doc on call just happened to be the one in charge of the transplants, so that was nice and I was able to ask some questions regarding the transplant. Actually, it didn't just happen, I prayed about it. I love it when that happens. We will have a big meeting prior to BMT also, so we will know all about it. They were going to go straight to transplant but this doc was talking about a possibility of maybe doing one more round if he keeps doing this well to get him in a deeper remission. Deeper remission means there will be more cancer cells destroyed, the ones you can't see, so hopefully more chance of the BMT succeeding. I know there will be some amazing results as B goes through this.
I know some mom's up here. So many sad stories. So many good stories. So many relapses. So many new diagnoses! 1 child in 320 will be diagnoses with cancer EACH DAY! No one is immune. Children are not the same as adults. They don't get cancer because they ate too much junk their whole life etc...yes all that helps keep it away and helps everyone's life in general, but I truly believe that there is something big that happens that causes cancer in them, like a mix of the right conditions such as virus, molds, parasites, food intake and pesticides all in different scenarios depending on the kid, the location, the cancer etc...
I can't and don't try to figure it out, it is too big for my brain, especially now. Ugh. But God is good and supplies all our needs and is always giving peace and comfort.
Believing for healing,,,,,,,,,,,,,,
The doc on call just happened to be the one in charge of the transplants, so that was nice and I was able to ask some questions regarding the transplant. Actually, it didn't just happen, I prayed about it. I love it when that happens. We will have a big meeting prior to BMT also, so we will know all about it. They were going to go straight to transplant but this doc was talking about a possibility of maybe doing one more round if he keeps doing this well to get him in a deeper remission. Deeper remission means there will be more cancer cells destroyed, the ones you can't see, so hopefully more chance of the BMT succeeding. I know there will be some amazing results as B goes through this.
I know some mom's up here. So many sad stories. So many good stories. So many relapses. So many new diagnoses! 1 child in 320 will be diagnoses with cancer EACH DAY! No one is immune. Children are not the same as adults. They don't get cancer because they ate too much junk their whole life etc...yes all that helps keep it away and helps everyone's life in general, but I truly believe that there is something big that happens that causes cancer in them, like a mix of the right conditions such as virus, molds, parasites, food intake and pesticides all in different scenarios depending on the kid, the location, the cancer etc...
I can't and don't try to figure it out, it is too big for my brain, especially now. Ugh. But God is good and supplies all our needs and is always giving peace and comfort.
Believing for healing,,,,,,,,,,,,,,
Thursday, July 28, 2011
reminiscing with photos
I have been spending some time organizing my photos. Waiting patiently for the sales to go on so I can clear up my blog and put pics on there again. I finally got that done today! Wow, I am now printing out 2009. So surreal to go through those. Braveheart looking so good, we thinking he was going to finish this and be done forever. Sometimes our timing isn't the Lord's timing. I know he will be healed, I just know it! It just feels weird to look back on our journey and be where we are now. It hurts a little. When the cancer comes back, it is harder to cure. Kids are so different from adults. His is so fast, it gives us little time and less choices! That can be very hard to swallow. I am strong though, HE makes us pillars of iron..look in Jeremiah! God's word is healing and it gives so much good word to live and speak out over our lives...thank you Jesus for our boy!
Thursday, July 21, 2011
giving blood the easy way
I will admit that I have a very hard time giving blood. I get icky feeling for most of the day. I know they say to drink lots of water, but I always think I do. I haven't given as much lately due to this and the stress involved with my own child being ill. Now, however, I was feeling so good the other day and B had to get blood in the hospital, so I said, why not get on it again?!! I determined to drink starting the day before. I also added powdered greens to my water to build volume and make my blood nice and healthy. It was a peace of cake. They made me drink juice during the donation. I drank all night. I felt GREAT!! I encourage you to go out and do it. If you never have, now is the time. It could be your son or daughter next having a need for this. Accidents happen. Blood saves my son's life while in treatment. Thank you to those of you who take the time. Blessings upon you in Jesus' name.
PS: THEY NEED MEN TO DONATE JUST PLATELETS, SO THE RECIPIENT CAN GET ALL THE SAME CELLS. THEY ARE FINDING AN INFECTION IN WOMAN, SO THEY PREFER MEN. GO GET YOU STRONG ABLE BODIED MEN!!
PS: THEY NEED MEN TO DONATE JUST PLATELETS, SO THE RECIPIENT CAN GET ALL THE SAME CELLS. THEY ARE FINDING AN INFECTION IN WOMAN, SO THEY PREFER MEN. GO GET YOU STRONG ABLE BODIED MEN!!
Tuesday, July 19, 2011
pre-transplant nesting?
I cannot believe how much I am getting done! The Lord has given me an amazing strength and energy and ability to accomplish so much right now. Braveheart is sleeping, kids have done chores and read and I am getting one thing after another done on my list.
The kids school plans are being laid, books being ordered, supplies bought and checklists created. I feel like I am a new mother nesting in her home prior to the arrival of the baby. In a way I am, because we will be welcoming the arrival of a new bone marrow for our precious boy! I hate that we have to do this but there it is. I know that He will be supernaturally healed through this and we will see a true testament to God's healing.
Now, the house on the other hand, no matter what I do, I turn around and there it looks like a tornado has run through...ugh. I am trying to hold on to some semblance of that, but hey, the laundry is caught up. How many of you can say that? :)
The kids school plans are being laid, books being ordered, supplies bought and checklists created. I feel like I am a new mother nesting in her home prior to the arrival of the baby. In a way I am, because we will be welcoming the arrival of a new bone marrow for our precious boy! I hate that we have to do this but there it is. I know that He will be supernaturally healed through this and we will see a true testament to God's healing.
Now, the house on the other hand, no matter what I do, I turn around and there it looks like a tornado has run through...ugh. I am trying to hold on to some semblance of that, but hey, the laundry is caught up. How many of you can say that? :)
Saturday, July 16, 2011
cure search is the children's cancer research organization to support
This is taken from a fellow cancer warrior's carepage.
SWIMMERS GO GOLD TO CURE KIDS CANCER
Swimmers from the North Shore Summer Swim League and surrounding area pool and beach clubs are hosting the “Swimmers Go Gold to Cure Kids Cancer” campaign to help raise awareness and funding for childhood cancer research. Their efforts will benefit the Make Some Noise: Cure Kids Cancer Foundation, a pediatric cancer research foundation started by a child with cancer. Gold is the awareness color for childhood cancer, and teams are asking their swimmers to wear gold bathing caps at home meets. They hope to create a
“pool of gold” to help raise awareness for childhood cancers.
In May of 2009, Lilly Daneman, of Little Silver was diagnosed with a pediatric bone cancer called Ewing’s Sarcoma, she was nine years old. Lilly attended Seashore Day Camp and School and was a member of the Monmouth Barracuda Swim Team. For treatment, she spent over 100 days in the hospital, received 14 rounds of chemotherapy and limb salvage surgery to replace her femur with a titanium rod. Her schoolmate, Jack McLoone, who was twelve at the time, was also battling a form of childhood Leukemia. Lilly and Jack are now both in remission. Lilly swims and enjoys the ocean after major rehabilitation, and is competing once again, to a limited degree, on the summer Water’s Edge Beach Club Swim Team. Jack, who suffers severe nerve damage from his chemotherapy, is also enjoying life playing his beloved sport of baseball.
During Lilly’s surgery at Children’s Hospital of Philadelphia, in August 2009, she met 11-year-old Malcolm Sutherland- Foggio, of Morris County, who had the same type of pediatric cancer. He wanted to form a foundation to make some noise about children’s cancer and raise research funding on a national level. Lilly and Malcolm became fast friends. Malcolm incorporated Make Some Noise in September 2009, at which point, Lilly’s mother, Gerri Daneman, joined the Board of Trustees to help the foundation raise funds for Pediatric Cancer Research. In September 2010, with the help of the McLoone family, Make Some Noise hosted “Rockin’ the Boardwalk” and a sand castle building contest at McLoone’s Pier House in Pier Village. The dinner auction was dedicated to the memory of Mark Levin, age 9, who had recently passed from childhood cancer, and honored nearly a dozen Monmouth County childhood cancer warriors. This September, (which is pediatric cancer awareness month), the foundation plans to make a little more noise in Monmouth County, as so many children of Monmouth County are battling childhood cancers.
In January of 2011, another young swimmer from the Monmouth Barracudas, Rachel Kovach, was also diagnosed with Ewing’s Sarcoma. Rachel’s coach, Paul Buerck, was devastated to learn the news. Coach Paul has had two swimmers diagnosed within a year and a half of each other, and is also the teacher of two other young Monmouth County girls currently battling relapsed Leukemia. Pediatric cancer is not as rare as one would think, in fact 1 in every 320 children are diagnosed with cancer. Coach Paul and the Monmouth Barracudas hosted “Race for Rachel” in February, 2011, and Rachel and her family designated Make Some Noise as the beneficiary of the very successful event. But knowing how great the research funding needs are, Coach Paul felt he needed to do more to make some noise about childhood cancer.
This summer, Coach Paul Buerck and the Monmouth Barracuda Swim team, along with Coach Robin Levin from Seashore Day Camp have rallied the North Swim League and other surrounding area swim teams to Make Some Noise to help cure kids’ cancer. Swim teams are being asked to “Go Gold,” have their swimmers purchase gold Make Some Noise swim caps for $10.00 and wear them at one of their home meets. Some of the teams are making plans to have other types of fundraising functions at these meets to help raise more funding for critically needed research. Teams with upcoming Gold meets are Chapel; Little Monmouth; Monmouth Beach Bath & Tennis; Promenade; Sands; Seabright Bath & Tennis; Seashore Day Camp and School; Ship Ahoy; Surfrider; and Waters Edge. Make Some Noise Chairman, Julie Sutherland, Malcolm’s mother, and herself a former competitive swimmer, is delighted by the tremendous support.
A child’s odds of being diagnosed are 1 in 320—three times their likelihood of being admitted into an Ivy League College. Many treatments for childhood cancers are 30 years old, and cure research is slowed compared to adult cancer research due to lack of funding. Childhood cancer as a whole receives only 3% of the research funding pie, and that 3% needs to be divided among more than a dozen different pediatric cancers. Image how underfunded that makes any one of these childhood cancers. Some cancers, like Acute Myeloid Leukemia and most of the solid tumors, like brain and bone cancers still have poor survival rates. Those who survive childhood cancers face serious long term health consequences from the treatments they received as growing children. Chemo therapy and radiation are extremely harsh on developing organs.
The Make Some Noise: Cure Kids Cancer Foundation is head-quartered in Morris County, and occupies office space courtesy of the Mack-Cali Corporation’s generous subsidizing. The foundation raises critically needed research funds for all childhood cancers and distributes them to pediatric cancer research facilities across the country… choosing cancer specific research to fund to be sure the money is well directed. Their mission is to make some noise on a national level as quickly as possible to help speed up the research funding. In the 21 months since incorporation, Make Some Noise has raised over half a million dollars, but they are just getting started. We lose as many children to cancer each year as the number of people we lost on 911. If cures remain another 10 years off, we will lose another 20-30,000 children to cancer in this country alone, one million world-wide.
The Make Some Noise Foundation is extremely grateful to the swim teams, their coaches, families, and supporters for their heroic efforts to help make some noise about childhood cancer, and is inspired to help make this a national initiative. If your team wishes to join the campaign, contact Gerri Daneman, gerri@makenoise4kids.org for more information.
SWIMMERS GET READY .. You will be the first of a NATIONWIDE CAMPAIGN TO RAISE RESEARCH MONEY FOR PEDIATRIC CANCER..
We will be going to high-schools,colleges and competitions across the country.
SWIMMERS GO GOLD TO CURE KIDS CANCER
Swimmers from the North Shore Summer Swim League and surrounding area pool and beach clubs are hosting the “Swimmers Go Gold to Cure Kids Cancer” campaign to help raise awareness and funding for childhood cancer research. Their efforts will benefit the Make Some Noise: Cure Kids Cancer Foundation, a pediatric cancer research foundation started by a child with cancer. Gold is the awareness color for childhood cancer, and teams are asking their swimmers to wear gold bathing caps at home meets. They hope to create a
“pool of gold” to help raise awareness for childhood cancers.
In May of 2009, Lilly Daneman, of Little Silver was diagnosed with a pediatric bone cancer called Ewing’s Sarcoma, she was nine years old. Lilly attended Seashore Day Camp and School and was a member of the Monmouth Barracuda Swim Team. For treatment, she spent over 100 days in the hospital, received 14 rounds of chemotherapy and limb salvage surgery to replace her femur with a titanium rod. Her schoolmate, Jack McLoone, who was twelve at the time, was also battling a form of childhood Leukemia. Lilly and Jack are now both in remission. Lilly swims and enjoys the ocean after major rehabilitation, and is competing once again, to a limited degree, on the summer Water’s Edge Beach Club Swim Team. Jack, who suffers severe nerve damage from his chemotherapy, is also enjoying life playing his beloved sport of baseball.
During Lilly’s surgery at Children’s Hospital of Philadelphia, in August 2009, she met 11-year-old Malcolm Sutherland- Foggio, of Morris County, who had the same type of pediatric cancer. He wanted to form a foundation to make some noise about children’s cancer and raise research funding on a national level. Lilly and Malcolm became fast friends. Malcolm incorporated Make Some Noise in September 2009, at which point, Lilly’s mother, Gerri Daneman, joined the Board of Trustees to help the foundation raise funds for Pediatric Cancer Research. In September 2010, with the help of the McLoone family, Make Some Noise hosted “Rockin’ the Boardwalk” and a sand castle building contest at McLoone’s Pier House in Pier Village. The dinner auction was dedicated to the memory of Mark Levin, age 9, who had recently passed from childhood cancer, and honored nearly a dozen Monmouth County childhood cancer warriors. This September, (which is pediatric cancer awareness month), the foundation plans to make a little more noise in Monmouth County, as so many children of Monmouth County are battling childhood cancers.
In January of 2011, another young swimmer from the Monmouth Barracudas, Rachel Kovach, was also diagnosed with Ewing’s Sarcoma. Rachel’s coach, Paul Buerck, was devastated to learn the news. Coach Paul has had two swimmers diagnosed within a year and a half of each other, and is also the teacher of two other young Monmouth County girls currently battling relapsed Leukemia. Pediatric cancer is not as rare as one would think, in fact 1 in every 320 children are diagnosed with cancer. Coach Paul and the Monmouth Barracudas hosted “Race for Rachel” in February, 2011, and Rachel and her family designated Make Some Noise as the beneficiary of the very successful event. But knowing how great the research funding needs are, Coach Paul felt he needed to do more to make some noise about childhood cancer.
This summer, Coach Paul Buerck and the Monmouth Barracuda Swim team, along with Coach Robin Levin from Seashore Day Camp have rallied the North Swim League and other surrounding area swim teams to Make Some Noise to help cure kids’ cancer. Swim teams are being asked to “Go Gold,” have their swimmers purchase gold Make Some Noise swim caps for $10.00 and wear them at one of their home meets. Some of the teams are making plans to have other types of fundraising functions at these meets to help raise more funding for critically needed research. Teams with upcoming Gold meets are Chapel; Little Monmouth; Monmouth Beach Bath & Tennis; Promenade; Sands; Seabright Bath & Tennis; Seashore Day Camp and School; Ship Ahoy; Surfrider; and Waters Edge. Make Some Noise Chairman, Julie Sutherland, Malcolm’s mother, and herself a former competitive swimmer, is delighted by the tremendous support.
A child’s odds of being diagnosed are 1 in 320—three times their likelihood of being admitted into an Ivy League College. Many treatments for childhood cancers are 30 years old, and cure research is slowed compared to adult cancer research due to lack of funding. Childhood cancer as a whole receives only 3% of the research funding pie, and that 3% needs to be divided among more than a dozen different pediatric cancers. Image how underfunded that makes any one of these childhood cancers. Some cancers, like Acute Myeloid Leukemia and most of the solid tumors, like brain and bone cancers still have poor survival rates. Those who survive childhood cancers face serious long term health consequences from the treatments they received as growing children. Chemo therapy and radiation are extremely harsh on developing organs.
The Make Some Noise: Cure Kids Cancer Foundation is head-quartered in Morris County, and occupies office space courtesy of the Mack-Cali Corporation’s generous subsidizing. The foundation raises critically needed research funds for all childhood cancers and distributes them to pediatric cancer research facilities across the country… choosing cancer specific research to fund to be sure the money is well directed. Their mission is to make some noise on a national level as quickly as possible to help speed up the research funding. In the 21 months since incorporation, Make Some Noise has raised over half a million dollars, but they are just getting started. We lose as many children to cancer each year as the number of people we lost on 911. If cures remain another 10 years off, we will lose another 20-30,000 children to cancer in this country alone, one million world-wide.
The Make Some Noise Foundation is extremely grateful to the swim teams, their coaches, families, and supporters for their heroic efforts to help make some noise about childhood cancer, and is inspired to help make this a national initiative. If your team wishes to join the campaign, contact Gerri Daneman, gerri@makenoise4kids.org for more information.
SWIMMERS GET READY .. You will be the first of a NATIONWIDE CAMPAIGN TO RAISE RESEARCH MONEY FOR PEDIATRIC CANCER..
We will be going to high-schools,colleges and competitions across the country.
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