Our clinic visit yesterday went well. Hannah's counts were all up a bit, but not much. I was surprised to see that her counts are so slow in coming up. But the doctor yesterday assured me that it was common, sometimes it takes up to one year for the counts to come back within normal range. She gained almost a pound since our last visit (January 24.) That is not much, but she did have the stomach flu and was sick for a full week since our last visit.
So Hannah and I made a deal yesterday about accessing. I told Hannah that if she was quiet-no screaming, no kicking, no yelling, no biting, no holding her shirt down, or pushing the nurse's hands away, no crying, and was very calm that she would get something special. We finally decided on a trip to Build a Bear. So the time came, she started to resist a bit, but I reminded her of that cute Build A Bear waiting for her and she did great! She was holding back so much her whole body was shaking and had tears, but was very quiet. I thought she was going to explode! I don't know what's worse, seeing her like that was almost as bad for me, but I hope it was better for her. I told her how proud I was of her, and that she should be so proud too.
I thought that after her MRI, scheduled for March 11, they would most likely take her port out. Hannah had also already made an advance deal for the next port accessing (she is one smart cookie) for $20 cash. I guess she doesn't know that the Build a Bear is about 3 times that price. However, I learned yesterday that Hannah will not get her port out after her next MRI. They told me that they typically wait until 6 months post treatment to remove the port (just in case). So, considering that the port has to be accessed once a month, that's a few more expensive proposals for me! If only I had known! That's ok, though still a small price to pay for calm accessing, and it seems to motivate Hannah. That means the port won't come out until after her 6 month post MRI, which would be at the end of June.
Hannah was pretty excited that today would be her first day of gymnastics. We had arranged for her to go back into the class she was in, and I would be her personal assistant in the class (I used to teach gymnastics there before Hannah's diagnosis.) The class started with a good warm up for Hannah, then we moved to our first event and she started crying. She said she was scared. Even though she didn't know any of the girls in the class, they were all very nice and supportive to her. After a few minutes, and a couple runs down to the vault, she was complaining of pain in her foot. We moved them to the trampoline, and soon after she started there, she was crying of leg pain. It became quickly obvious that Hannah was not ready for gymnastics. Her blood counts are still half of what they should be, and her muscle tone is so low. It was disappointing, but I tried to explain to her that she can always come back when we get her muscles a bit stronger. We are going to set up special courses for her, things that aren't too trying, but at the same time will build her strength, and I will work with her individually each Friday.
I think I got caught up in the "she looks good, she must be good" thinking that seems to surround kids at this point. I have spoken to so many mothers who say that other people see that their kids are off treatment, they are growing hair, they are in school, so they must be back to normal. Some one had informed me last week that another person had made a comment that they had seen me and my family in church, so everything must be just fine again. I wish it was just fine, I wish we could just go back to our lives BC, before cancer. It just doesn't work like that. People don't see how Hannah can't stand with her feet together without falling over, how she has to take a vitamin mix each morning and evening that she chokes down (but not as bad as the protein drinks), how she still reaches for my hand when we're walking outside, or on uneven terrain because she is still a bit steady on her feet, how she wants to stay up late at night, but can't because she is just too tired, how she can't hold her drink in her left hand because it will spill from the shaking, how she still cries and is emotional about things, or how she is still nervous and uncertain in situations that aren't quite usual for her. Yes, things are better, no, they are not back to "normal." Tonight proved this again.
xoxo Kim
Tuesday, Feb. 26, 2008
Another good day for Hannah. She was at school today all day with no issues. Colby stayed home today, we thought she may have strep throat, but looks like just a bad cold. Hannah was pretty mad that her sister got to stay home and she didn't. I guess she is used to having it the other way around.
Tod came back home tonight-he spent last night at the vet, his time had come to be neutered, so no little Tods will be running around town. When Tod heard Hannah's voice at the vet's office, he started squeaking in his high pitched LOUD squeal from the other room and Hannah noticed it right away. She had tears in her ears when they brought him in. Now we're supposed to keep him calm for a week-HA!
Another reason for my post tonight-the American Cancer Society's Relay for Life. Undoubtedly you've heard about it, it's their nationwide fundraising campaign. I see it on lots of blogs for kids I follow, and online everywhere. So are we participating? Have you wondered why I haven't announced our team name and started hawking for donations? It's not because we don't support cancer research and funding. It's just that our focus is different. We have a child with pediatric cancer. The American Cancer Society, while a wonderful organization, focuses it's donations on the biggest need from the biggest population. That is not children. In 2002-2003 the ACS received nearly $1 billion in donations. From that $1 billion, only $7 million was alloted to pediatric cancer research, less than 1%. Wow. That's low, that is unacceptable.
In my research, I came upon this blog site of a child, Shelby Prescott from Atlanta, that died at age 5 from neuroblastoma-similar in many ways to medulloblastoma. I did verify the facts, and they are good. Rather than paraphrase the information, I am copying the information for you below. Please note that this entry was written in 2006, so these statistics are dated, but still good. I have added some of my own comments to it, I think it says it all:
This article puts into words exactly how I feel about the Relay for Life. I think it's a wonderful event, and would never begrudge anyone from participating. For those of you participating in or giving money to a Relay Team, GOOD LUCK! It just doesn't focus on the same thing we do-funding for PEDIATRIC CANCER. We will keep trudging along with our goals like raising funds for Hannah's Cans for Cancer, and even bigger-getting the Conquer Childhood Cancer Act passed through the House and Senate.
Goodnight all, xoxo Kim
Tod came back home tonight-he spent last night at the vet, his time had come to be neutered, so no little Tods will be running around town. When Tod heard Hannah's voice at the vet's office, he started squeaking in his high pitched LOUD squeal from the other room and Hannah noticed it right away. She had tears in her ears when they brought him in. Now we're supposed to keep him calm for a week-HA!
Another reason for my post tonight-the American Cancer Society's Relay for Life. Undoubtedly you've heard about it, it's their nationwide fundraising campaign. I see it on lots of blogs for kids I follow, and online everywhere. So are we participating? Have you wondered why I haven't announced our team name and started hawking for donations? It's not because we don't support cancer research and funding. It's just that our focus is different. We have a child with pediatric cancer. The American Cancer Society, while a wonderful organization, focuses it's donations on the biggest need from the biggest population. That is not children. In 2002-2003 the ACS received nearly $1 billion in donations. From that $1 billion, only $7 million was alloted to pediatric cancer research, less than 1%. Wow. That's low, that is unacceptable.
In my research, I came upon this blog site of a child, Shelby Prescott from Atlanta, that died at age 5 from neuroblastoma-similar in many ways to medulloblastoma. I did verify the facts, and they are good. Rather than paraphrase the information, I am copying the information for you below. Please note that this entry was written in 2006, so these statistics are dated, but still good. I have added some of my own comments to it, I think it says it all:
The American Cancer Society and Childhood Cancer Research Funding
The American Cancer Society’s (ACS) Relay for Life (RFL) is the world’s largest fund raising event in the world with some 4000 events in the US and many more in 7 other countries. More than 2.5 million Americans will participate in this event in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate over $400 million dollars with the expectation that their time and money will get us closer to a cure for cancer. But which cancers will benefit from that $400 million??
There are roughly 100 different types of cancer; each one using different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the ACS budgets their income (donations) according to largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will only be about 12,500 children diagnosed. Also like any other financial entity, the ACS and RFL look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County boasts the largest Relay for Life in the world; raising approximately $2 million dollars last year by about 10,000 participants. To promote the Relay, organizers search for “Honorary Chairpersons”. People who have battled cancer and survived or are still battling cancer, but are survivors! The Honorary Chairpersons are presented at a large kick off Pep rally with guest speakers, recording artist, testimonials, and all the fan fair. They’re paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 Relay, my 4 year old daughter Shelby was an Honorary Chairperson. There were 20 that year - Nineteen children and one adult. Shelby was the youngest. Shelby was diagnosed with the childhood cancer, Neuroblastoma, on November 30, 2001. Only about 600 cases of Neuroblastoma are diagnosed each year. Half of these children will die within 5 years. Since Shelby participated in the Relay for Life, I have learned a lot about distribution of donations within the cancer world.
As I mentioned before, the ACS distributes their funds according to the greatest need or the greatest number of patients effected. According to the ACS’s funding chart for 2002-2003, $132 million was given to cancer research. Only $7 million was given to childhood cancer research. Total donations for the same time period was close to $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides, and many other help programs, as well as fundraising efforts salaries and other executive expenses. One side note, when we tried to get a brochure on programs for children diagnosed with cancer, there wasn’t one.
Anyway, back to distribution of funds. If you had donated $100 to Relay for Life hoping to show your support for the honary chairpersons, $12.47 would have gone to research adult cancers while only 70 cents would have gone to Childhood cancer research. Another way to look at it- Gwinnett RFL’s group of Honorary chairpersons is made up of 95% children but only 0.70% (that’s right, less than 1%) of the donations will go toward childhood cancer research. I think there’s something wrong with this picture. Don’t you?
I’m not trying to get people to stop donating and participating in Relay for Life. The ACS does a lot of good for the adult world of cancer. But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations. When Shelby was first diagnosed, the drugs used in her protocol were all “Hand Me Down” drugs developed and tested for adult cancers. Once they went through the 5-10 years of testing to be FDA approved for adults, they had to go through another 5-10 years be retesting and re-approval for use in children. Not one drug that was used in Shelby’s treatment was designed specifically for childhood cancers.
You may think that I’m biased because I’m the parent of a child with cancer, but I also need to tell you that my wife was diagnosed with breast cancer in October of 2005 and her mother died of breast cancer 9 years ago. There is a huge need for funding in all areas of Cancer research, but please take the time to pick the right organization to put your money into. If it’s Breast Cancer research or Colon Cancer research, by all means, get a team together and walk in the Relay, but don’t walk in memory or honor of a child. It will only be a waste of your time and resources.
This article puts into words exactly how I feel about the Relay for Life. I think it's a wonderful event, and would never begrudge anyone from participating. For those of you participating in or giving money to a Relay Team, GOOD LUCK! It just doesn't focus on the same thing we do-funding for PEDIATRIC CANCER. We will keep trudging along with our goals like raising funds for Hannah's Cans for Cancer, and even bigger-getting the Conquer Childhood Cancer Act passed through the House and Senate.
Goodnight all, xoxo Kim
Sunday, Feb. 24, 2008
Here is the promised posting about Hannah's Cans for Cancer! There has been a lot of activity lately with her quest. We are so excited to report that to date, Hannah has raised $2,956.10! We are so thankful to everyone out there that has donated to Cans for Cancer, whether it be pennies, dollars, or dropping off bottles and cans, EVERYTHING helps! It all adds up!
Of that total amount raised, the total amount we have given in donation is $1,241.57, and the total in the fund currently is $1,714.53. Hannah has big plans for the money. We are researching purchasing Nintendo Wii's for Spaulding Rehab Hospital (where Hannah was for rehab during her proton radiation), St. Charles Hospital (where Hannah stayed after surgery for rehab therapy before radiation) and Med 4 at Schneider Children's Hospital (where all the kids with cancer stay for inpatient services.) We are especially excited about the Wii's since they are very therapeutic in that they strengthen hand/eye coordination, increase connections between the brain and body helping the brain relearn movements, and so much more. We are excited that these will be able to help kids on their road to recovery and keep them from being bored!!
I have included a log on the bar to the left under Hannah's Cans for Cancer section and will keep it updated as we progress. We have lots ideas for expanding and trying new fund raisers (thank you to Greg for your bicycle offer, we'll talk!) We look forward to keeping this moving and helping as many children as we can as they fight their courageous battles.
As for Hannah, she had a good weekend, a very nice week off of school. None of us are very excited about going back tomorrow. She went horseback riding on Saturday and was the only one in her class. It was good for her to have concentrated attention and she did great! She continues to eat so much better than before, wow what a relief! There are still many many things she won't try, or things that just don't taste right to her. We just keep trying new combinations and new foods-thank you to Anne for the great cookbook-and some of them work, although many of them bomb! She still has moments every day of nausea and stomach pain, but they are no longer the focal part of her day. She told me today that she often gets stomach aches around lunchtime, then she ate 2 grilled cheese sandwiches!
We go back to clinic this week on Thursday to have her levels checked again and she will also have an audiogram. Even though she is not on chemo, we have to monitor her hearing for quite some time. Some kids do have late term hearing loss from radiation. They tried to spare Hannah's hearing by decreasing the field of radiation slightly, but they can only do that to a very small extent so to ensure they get the entire area of the tumor so that there is no area left untreated in which new growth can occur. This was a relatively new technique used at the time Hannah had her radiation done, but her radiation oncologist was at the lead in developing this reduced field of radiation and ensured us it was the best way to go for Hannah without changing the efficacy of the radiation.
I wanted to leave you with this song from Randy Owen (who used to be the lead singer of Alabama) called Braid My Hair. Click HERE to be directed to his website and the song should start automatically. It's a great song, tough to listen to for me, but a good song. 100% of the publishing proceeds from the song go to St. Jude's Research Hospital.
I will leave you with a few pictures from our week, all such normal kid things-a pillow fight at the girl scout sleepover (which should be called the NO SLEEP sleepover), Hannah's awesome cake (she loves to bake ALL the time), and the snowmen!
xoxo Kim
Of that total amount raised, the total amount we have given in donation is $1,241.57, and the total in the fund currently is $1,714.53. Hannah has big plans for the money. We are researching purchasing Nintendo Wii's for Spaulding Rehab Hospital (where Hannah was for rehab during her proton radiation), St. Charles Hospital (where Hannah stayed after surgery for rehab therapy before radiation) and Med 4 at Schneider Children's Hospital (where all the kids with cancer stay for inpatient services.) We are especially excited about the Wii's since they are very therapeutic in that they strengthen hand/eye coordination, increase connections between the brain and body helping the brain relearn movements, and so much more. We are excited that these will be able to help kids on their road to recovery and keep them from being bored!!
I have included a log on the bar to the left under Hannah's Cans for Cancer section and will keep it updated as we progress. We have lots ideas for expanding and trying new fund raisers (thank you to Greg for your bicycle offer, we'll talk!) We look forward to keeping this moving and helping as many children as we can as they fight their courageous battles.
As for Hannah, she had a good weekend, a very nice week off of school. None of us are very excited about going back tomorrow. She went horseback riding on Saturday and was the only one in her class. It was good for her to have concentrated attention and she did great! She continues to eat so much better than before, wow what a relief! There are still many many things she won't try, or things that just don't taste right to her. We just keep trying new combinations and new foods-thank you to Anne for the great cookbook-and some of them work, although many of them bomb! She still has moments every day of nausea and stomach pain, but they are no longer the focal part of her day. She told me today that she often gets stomach aches around lunchtime, then she ate 2 grilled cheese sandwiches!
We go back to clinic this week on Thursday to have her levels checked again and she will also have an audiogram. Even though she is not on chemo, we have to monitor her hearing for quite some time. Some kids do have late term hearing loss from radiation. They tried to spare Hannah's hearing by decreasing the field of radiation slightly, but they can only do that to a very small extent so to ensure they get the entire area of the tumor so that there is no area left untreated in which new growth can occur. This was a relatively new technique used at the time Hannah had her radiation done, but her radiation oncologist was at the lead in developing this reduced field of radiation and ensured us it was the best way to go for Hannah without changing the efficacy of the radiation.
I wanted to leave you with this song from Randy Owen (who used to be the lead singer of Alabama) called Braid My Hair. Click HERE to be directed to his website and the song should start automatically. It's a great song, tough to listen to for me, but a good song. 100% of the publishing proceeds from the song go to St. Jude's Research Hospital.
I will leave you with a few pictures from our week, all such normal kid things-a pillow fight at the girl scout sleepover (which should be called the NO SLEEP sleepover), Hannah's awesome cake (she loves to bake ALL the time), and the snowmen!
xoxo Kim
Tuesday, Feb. 19, 2008
I did not have a big update thought out for tonight, but as I go from website to website reading about all of these kids and their fights to live, it just gets to be a bit overwhelming. I follow several other kids websites, some of whom have already earned their angel wings. It seems that the more sites I visit, the more sites there are, one leads to another to another. So many children have life threatening cancer, it's just hard to believe. I can relate to their pain, their sorrow at having lost their hopes and dreams for their "normal" child after they are diagnosed. Everything changes for the child and their family, even if they are survivors. I realized for the first time tonight that that is what Hannah is: A SURVIVOR!!! She has beaten back this big bad monster called cancer, and whether this lasts for a month or a year, or a lifetime, it's something to shout to the heavens and back: HANNAH BEAT CANCER!!
I often find my self caught up still in the world of hurt and pain and suffering for these children. Even though Hannah continues to make strides almost weekly, it's hard not to wonder what lies ahead. Then last week I read on Coleman's website that his last MRI showed signs of reduction in his tumors (he has recurrent medulloblastoma), which is somewhat of a miracle!! Go Coleman!! He and his brother are so cute and so feisty, I love to read their website, it's so entertaining and Peggy makes you feel as if you were right there. Check out this excerpt from their site from Coleman and his twin Caden and you will know what I mean:
Okay, I’ll leave you with a little story that I debated on sharing since I really don’t want to offend anyone, but if any of you have a four year old boy at home, I think you can relate.
Last night’s bedtime comments:
Coleman: Mommy? Why do you wear a bra?
Caden: She has-ta wear one so her boobies don’t fall off Coleman.
Coleman: WHY?
Caden: Tuz they are a wittle woose! (a little loose)
Forgive me Peggy if you are reading this! After their good news in the midst of their very serious situation, Peggy chose to relish in the situation, rejoice and be happy rather than think of what may still lie ahead for Coleman. Her exact thoughts were that she was not going to let her fear rob her of celebrating.
That was like a wake up call to me: don't let fear rob you of moving forward in your lives. Celebrate that Hannah has beaten this beast and has won her battle. It's sad to say that so many others have not. I have fear, I have so much fear. In the back of my mind is always precious little King Julian who lost his battle with medulloblastoma. He recurred only 6 months after his chemo ended and HE HAD THE SAME EXACT THING THAT HANNAH HAD. Therein lies my fear. But I can choose to focus on that sadness, or choose like Peggy to try and put down my fears and celebrate!! I choose a celebration. That is the path that Hannah seems to have unconsciously chosen for all of us. The path of "there is nothing wrong with me anymore, the tumor is gone and my hair is growing back, let's move on!" So I will follow her lead and move on. I will not lead fear control my days and nights anymore (at least not outwardly). I will celebrate where we are now and where we are headed. As Hannah would say to me "what's this WE stuff? I am the one that had cancer, not you." She always puts it in a such nice way!!!
At least she didn't say I'm a "wittle woose!"
xoxo Kim
I often find my self caught up still in the world of hurt and pain and suffering for these children. Even though Hannah continues to make strides almost weekly, it's hard not to wonder what lies ahead. Then last week I read on Coleman's website that his last MRI showed signs of reduction in his tumors (he has recurrent medulloblastoma), which is somewhat of a miracle!! Go Coleman!! He and his brother are so cute and so feisty, I love to read their website, it's so entertaining and Peggy makes you feel as if you were right there. Check out this excerpt from their site from Coleman and his twin Caden and you will know what I mean:
Okay, I’ll leave you with a little story that I debated on sharing since I really don’t want to offend anyone, but if any of you have a four year old boy at home, I think you can relate.
Last night’s bedtime comments:
Coleman: Mommy? Why do you wear a bra?
Caden: She has-ta wear one so her boobies don’t fall off Coleman.
Coleman: WHY?
Caden: Tuz they are a wittle woose! (a little loose)
Forgive me Peggy if you are reading this! After their good news in the midst of their very serious situation, Peggy chose to relish in the situation, rejoice and be happy rather than think of what may still lie ahead for Coleman. Her exact thoughts were that she was not going to let her fear rob her of celebrating.
That was like a wake up call to me: don't let fear rob you of moving forward in your lives. Celebrate that Hannah has beaten this beast and has won her battle. It's sad to say that so many others have not. I have fear, I have so much fear. In the back of my mind is always precious little King Julian who lost his battle with medulloblastoma. He recurred only 6 months after his chemo ended and HE HAD THE SAME EXACT THING THAT HANNAH HAD. Therein lies my fear. But I can choose to focus on that sadness, or choose like Peggy to try and put down my fears and celebrate!! I choose a celebration. That is the path that Hannah seems to have unconsciously chosen for all of us. The path of "there is nothing wrong with me anymore, the tumor is gone and my hair is growing back, let's move on!" So I will follow her lead and move on. I will not lead fear control my days and nights anymore (at least not outwardly). I will celebrate where we are now and where we are headed. As Hannah would say to me "what's this WE stuff? I am the one that had cancer, not you." She always puts it in a such nice way!!!
At least she didn't say I'm a "wittle woose!"
xoxo Kim
Monday, Feb. 18, 2008
Hannah had her first swimming lesson today. She did great! She was swimming and going under the water, she was jumping off the side (at which point Colby told me to relax, she would be fine) and diving too with the instructor's help. She must have climbed out of the pool by pulling herself up and out about 10 times. She said it was good, we took a shower at the place and then she almost collapsed. She was totally exhausted. We picked up a pizza on the way home, and she could barely stay awake for the ride. She asked if the lessons had to be so late at night (it was 4pm.) She sat on Dave's lap and ate half a piece of pizza when we got home, then topped it off with a cupcake. I was planning on putting her right to bed after that, around 6pm, but she picked up some energy and said she felt better after she ate. She ended up gong to bed around 7:30pm.
I think these lessons will do alot to increase her strength and stamina. They are 1/2 hour lessons, once a week for 6 weeks. We may continue them after that, and maybe even increase the frequency also. She did really enjoy herself.
Colby and I intended to take pictures today but were too wrapped up in watching her during the lesson, maybe next time. We have this whole week off of school, but things to do nearly every day like riding, planning for the science fair, more riding, visit with Sarah hopefully, and more riding. It's nice to have some down time with them.
xoxo Kim
I think these lessons will do alot to increase her strength and stamina. They are 1/2 hour lessons, once a week for 6 weeks. We may continue them after that, and maybe even increase the frequency also. She did really enjoy herself.
Colby and I intended to take pictures today but were too wrapped up in watching her during the lesson, maybe next time. We have this whole week off of school, but things to do nearly every day like riding, planning for the science fair, more riding, visit with Sarah hopefully, and more riding. It's nice to have some down time with them.
xoxo Kim
Sunday, Feb. 17, 2008
I wanted to share this with everyone for Valentine's Day, but I'm a little behind. Growing up, Hannah used to write notes to us. Sometimes they were stories, and other times they were simply notes saying "you're the best mom, I love you" or "Could you rock me tonight, love from your baby Hannah." This is a note she wrote a long time ago, that is quite weathered from me carrying it around in my purse for so long. If you can't read it, it says "I love you and myself and everyone." How sweet is that? Hannah had her first week of school last week, 5 full days in a row. WOW! Her morning nausea is getting better, it seems quite unpredictable. Saturday she got up, stomach hurt, and continued to feel that way on and off throughout the day. She did not go to riding this weekend, not because of the nausea, but because on Friday she hyper extended her knee at recess, and it hurt her quite a bit to walk on it. It is better already, it was just strained.
She did eat a hot dog and popcorn at Colby's lacrosse game on Saturday, but then ate 3 cupcakes for dinner. It just goes up and down. Dave commented that she seems to be acting like a kid again. That's a good assessment. She has some of her spunk back, she is eating more, although not consistently, and having some days now without significant stomach pain. Could this be life getting better for her? I sure hope so. When I think back to how she must have felt a lot of the time during the last year, it occurs to me that she didn't just feel badly. Feeling badly is when we have the stomach virus for 2 days and it goes away, or when we have a fever and it passes. She really didn't feel well, not a feeling I think any of us can really comprehend unless we have been through it. Only now that she is on the "other side" of this, and I see her continue to change, do I realize how bad it must have been for her.
Our next clinic visit is not until February 28th. That is only because I asked for her to come in to be accessed. Are you thinking WHAT? Hannah's mediport needs to be accessed at least once a month for it to remain viable, otherwise, a clot could form. The mediport is a central line inserted directly into a large vein the chest, so if it clots, there is a possibility of a clot dislodging and causing complications. No one at the clinic seemed to notice that Hannah had not been accessed since January 24, and would not be again until March 11th. I contacted them, and we moved her up to Feb. 28th. She will then have to be accessed again on March 11th for her MRI. That may be the last time. If the MRI is all clear, they should be scheduling surgery to have the port removed. Another milestone for her, I hope.
Not must else to report. The girls have this week off for our winter break. We don't have any big plans, a little here and there. We were hoping to meet Alec and his mom Amy for lunch at their house on Monday, but he was admitted for fever a few days ago, and although he is home, his counts are low so it is best that he not have others over right now. Hope you're better soon Alec! We do hope to see our cousin Sarah this week, for a get together. Hannah starts swimming lessons tomorrow and gymnastics (with me as her personal aide) next week. Both of the girls also just signed up for softball to start in March, and we'll just see how that goes for Hannah. She wanted to join, so we signed her up.
We will have a very exciting update in a few days regarding Hannah's Cans for Cancer project! Watch for more to come!
xoxo Kim
Wednesday, Feb. 13, 2008
Hannah was in school for the 3rd day in a row, and no problems! Our biggest issue at the moment is morning nausea. Even though she takes her prescription medicine for nausea before she even gets out of bed, she still does not want to eat in the morning. She says her stomach "hurts" and that it also "feels sick." This is not uncommon for a medulloblastoma brain tumor because that type of tumor is located in the posterior fossa. The posterior fossa is located in the skull, found near the brain stem and cerebellum, which is why it's such a delicate surgery and can sometimes cause life long complications-like balance issues, nausea, emotional issues, etc. You would think having a brain tumor is enough, you shouldn't have to live with all this other stuff too!
I have to say that today was the best day Hannah has had in a very long time. She woke up well and when I asked her if her stomach hurt, she said "not really." WOW! That's big news in our house. I have been giving her something new for nausea in the mornings, and maybe that is helping. It's a supplement from Germany, very easy to take. She had a good breakfast without me having to push her to eat, and no crying. She had 4 strawberries and 1 hard boiled egg. That is really good for her! Her eating is coming back also, there is less struggle to eat. I have not given her the shakes since she was sick with the stomach virus, and have been slowly incorporating her supplements back in also. I don't think she is too upset about not drinking those shakes. I'm going to try chocolate milk instead of the shakes and see how that goes.
I have also been trying to become more active in getting S911 Conquer Childhood Cancer Act. I found a website last night of yet another child that has died of cancer.
His name is Henry Tucker and was only 6 years old when he died of a rare and aggressive form of leukemia. His family has become very active in fundraising and campaigning against childhood cancer through their foundation-the Henry Tucker Foundation. In addition to the letter writing campaign for S911 which I have mentioned before on this website, they have also initiated a telephone calling campaign (I was making calls today to Senators they have targeted who are not yet sponsors for the bill, including John McCain). I want to put more here on Hannah's site, and will load everything soon for those of you who also want to take a moment out of your day to help the cause.
I'll leave you with this latest picture of Hannah and her HAIR! Check it out, she is so very proud of it now. One more thing I should mention that some people have asked me about-Tod is NOT up for adoption, I was joking (well, kind of).
xoxo Kim
I have to say that today was the best day Hannah has had in a very long time. She woke up well and when I asked her if her stomach hurt, she said "not really." WOW! That's big news in our house. I have been giving her something new for nausea in the mornings, and maybe that is helping. It's a supplement from Germany, very easy to take. She had a good breakfast without me having to push her to eat, and no crying. She had 4 strawberries and 1 hard boiled egg. That is really good for her! Her eating is coming back also, there is less struggle to eat. I have not given her the shakes since she was sick with the stomach virus, and have been slowly incorporating her supplements back in also. I don't think she is too upset about not drinking those shakes. I'm going to try chocolate milk instead of the shakes and see how that goes.
I have also been trying to become more active in getting S911 Conquer Childhood Cancer Act. I found a website last night of yet another child that has died of cancer.
His name is Henry Tucker and was only 6 years old when he died of a rare and aggressive form of leukemia. His family has become very active in fundraising and campaigning against childhood cancer through their foundation-the Henry Tucker Foundation. In addition to the letter writing campaign for S911 which I have mentioned before on this website, they have also initiated a telephone calling campaign (I was making calls today to Senators they have targeted who are not yet sponsors for the bill, including John McCain). I want to put more here on Hannah's site, and will load everything soon for those of you who also want to take a moment out of your day to help the cause. I'll leave you with this latest picture of Hannah and her HAIR! Check it out, she is so very proud of it now. One more thing I should mention that some people have asked me about-Tod is NOT up for adoption, I was joking (well, kind of).
xoxo Kim
Sunday, Feb. 10, 2008
Well it's been a long few days, but finally feeling pretty much back to normal. Saturday Dave came down with something, never quite rushing to the bathroom like the rest of us, but enough to keep him down for the weekend, so that's saying a lot. Saturday the girls and I stayed in bed in the morning, our bodies trying to recover. No-one made it to riding, so you know they were not feeling well.
Hannah really rallied and was feeling so much better this weekend. She got the virus first, so she was feeling better first. She was determined to make it the Me and My Pal Girl Scout Dance that our troops were hosting, and had prepared for. I would have preferred to be snuggling in at home but.....She missed it last year, and I couldn't help but think back to where we were at this same time last year, only 7 days out from the initial surgery. So, on that note, I happily went to the dance with her. Here are a few pictures of the night. Look at how great she looked, and that pretty corsage too, it's Pam thinking of her again, thanks!
She ended up having a great time, although at one point yelling at me while crying "this is the worst dance EVER!" She was mad because we were helping with the picture taking and missed one of her favorite dances. We made it up though, and danced quite a bit, which she loved. It was nice seeing many people we have not seen since diagnosis, because we really haven't been around and doing many girl scout things until recently again. That was great! I had to be careful though about not spending too much time talking to other adults, she wanted all the attention, and who could blame her?
It's way too late to add more, but will update again soon, you have to see a close up of all of Hannah's new hair, and hear about her latest Cans for Cancer venture!
xoxo Kim
Hannah really rallied and was feeling so much better this weekend. She got the virus first, so she was feeling better first. She was determined to make it the Me and My Pal Girl Scout Dance that our troops were hosting, and had prepared for. I would have preferred to be snuggling in at home but.....She missed it last year, and I couldn't help but think back to where we were at this same time last year, only 7 days out from the initial surgery. So, on that note, I happily went to the dance with her. Here are a few pictures of the night. Look at how great she looked, and that pretty corsage too, it's Pam thinking of her again, thanks!She ended up having a great time, although at one point yelling at me while crying "this is the worst dance EVER!" She was mad because we were helping with the picture taking and missed one of her favorite dances. We made it up though, and danced quite a bit, which she loved. It was nice seeing many people we have not seen since diagnosis, because we really haven't been around and doing many girl scout things until recently again. That was great! I had to be careful though about not spending too much time talking to other adults, she wanted all the attention, and who could blame her?
It's way too late to add more, but will update again soon, you have to see a close up of all of Hannah's new hair, and hear about her latest Cans for Cancer venture!
xoxo Kim
Thursday, Feb. 7, 2008
New rule #2: Moms should not be allowed get anything else either. As of 1:30am I officially have what Hannah had. In addition, as I am writing this, Colby now officially has it too. I guess this does confirm that what she had was a stomach virus. Seems like a lot of kids at the school have it also. Hannah was up and in the bathroom with me 3 of 4 times last night. But today she started to feel a bit better and asked for something to eat. At one point during the day today she went and got me a bottle of water with a straw, and told me I needed to stay hydrated. Such a good nurse! I'm now over the worst of it, and let's hope Colby's is short lived also.
All three of us will be home tomorrow relaxing and cleaning (me).
xoxo Kim
All three of us will be home tomorrow relaxing and cleaning (me).
xoxo Kim
Wednesday, Feb. 6, 2008
I think there should be a new rule: once you have had a brain tumor, you don't have to get anything else in your lifetime-no viruses, no flu, no colds. You have paid your dues, and now you're done. Until God hears that though and changes the rules, we'll continue plugging along. Hannah was home again today from school, woke this morning and threw up. Oh the nerves, nerves, nerves. But, she still had diarrhea, still all the signs of a viral infection. She had about 2 bites of soup for brunch, decided against it, but wanted peanut butter! Just peanut butter, with a spoon. That's my girl! So she ate some peanut butter, said she felt better after she ate. But that wavered off and on during the day. She took a long nap in the afternoon. Had some coke and one bite of dinner before she threw up again. A lot. Poor thing, even threw up all that good peanut butter.
Today when I had this fantasy moment of thinking that she could go to school, I got her dressed and was shocked when I put on her jeans. She said to me that she had not worn jeans in a while-she finds stretchy cotton pants more comfortable. These jeans were jeans that she was wearing last year, they had one of those expandable waistbands inside. They were so big on her, I had to take them in quite a bit on both sides. I still thought they were going to fall off of her. They are a size 6. She's 8 years old. I was just so surprised that they were so big. I am used to seeing her thin, but have forgotten what she has lost along the way last year. Except the tumor, and oh yes, the hair.
Here are a few pictures from tonight. Fifteen minutes after throwing up, Hannah was learning origami from Colby. Here is a picture of them with their creations- fish, dog, whale, flower. Colby is quite good at origami and she was great at teaching Hannah.
We told Kaitlyn at clinic on Tuesday that we would post some new pictures of Tod. Kaitlyn loved Tod when we brought him in to clinic, she asks Hannah how he is and when he is coming back. Isn't he so cute Kaitlyn? Wonder if she knows Tod is up for adoption?
And look at this picture of Tod and Riley. We thought it was so funny and wanted to post it here. Riley and Tod, true brothers.
Hannah will start her anti-pneumonia drugs tomorrow, maybe those will help her overcome this virus she has. Wishful thinking doesn't harm anyone!
xoxo Kim
Today when I had this fantasy moment of thinking that she could go to school, I got her dressed and was shocked when I put on her jeans. She said to me that she had not worn jeans in a while-she finds stretchy cotton pants more comfortable. These jeans were jeans that she was wearing last year, they had one of those expandable waistbands inside. They were so big on her, I had to take them in quite a bit on both sides. I still thought they were going to fall off of her. They are a size 6. She's 8 years old. I was just so surprised that they were so big. I am used to seeing her thin, but have forgotten what she has lost along the way last year. Except the tumor, and oh yes, the hair.
Here are a few pictures from tonight. Fifteen minutes after throwing up, Hannah was learning origami from Colby. Here is a picture of them with their creations- fish, dog, whale, flower. Colby is quite good at origami and she was great at teaching Hannah.
We told Kaitlyn at clinic on Tuesday that we would post some new pictures of Tod. Kaitlyn loved Tod when we brought him in to clinic, she asks Hannah how he is and when he is coming back. Isn't he so cute Kaitlyn? Wonder if she knows Tod is up for adoption?
And look at this picture of Tod and Riley. We thought it was so funny and wanted to post it here. Riley and Tod, true brothers.Hannah will start her anti-pneumonia drugs tomorrow, maybe those will help her overcome this virus she has. Wishful thinking doesn't harm anyone!
xoxo Kim
Tuesday, Feb. 5, 2008
Clinic today was quick and painless, but with mixed results. Hannah's counts were up and down. WHAT? Her Platelets went down, her white cells and her ANC went down. The whites could be down because she is fighting some kind of virus that she has had over the weekend. Why the platelets are down is a mystery but not unusual in this case. None of them are in the dangerous range, she can continue to go to school and go out in public. Her hemoglobin and red blood cells went up a bit, still under the normal range that the rest of us are walking around with.
She also lost weight, about a pound since our last appointment. Most of that probably came in the last weekend because she has reverted to eating almost nothing since she has had this stomach virus. She has to start anti-pneumonia drugs by mouth this month for the whole month, probably for the next 4 months or so. I will now set up her next audiogram to test her hearing again, and her next set of MRI's, set for the middle of March. If this MRI is all clear, she will have her port removed. That would be the next milestone for sure.
There is some concern over her morning vomiting, which she has had a couple of times recently. Besides that, the times that she hasn't been sick, she has still felt poorly. This is a classic sign of hydrocephalus (fluid on the brain, usually caused by a tumor blocking the fluid, in the case of brain tumors.) There are other signs too of hydrocephalus or tumor regrowth that she doesn't have. We're going to give it a few more days to let this virus pass, and if she is still exhibiting these symptoms, she will see a neurologist. My question is, why see a neurologist, why not just go straight to an MRI, that would let us know for sure. Doesn't seem like they are quite ready to just move up the MRI yet. We'll see how it goes the next few days.
So all in all, it was a pretty nerve wracking day. I really don't think that she has tumor regrowth, but I never in my wildest dreams thought she had a tumor in the first place. So for now we wait and watch.
Oh, one more thing. We have a dog here up for adoption. Tod chewed the power cord to my computer tonight, so it's no longer working. When the power runs out, this is it (which means I have to buy another cord.) Until then, come and get him :)
xoxo Kim
She also lost weight, about a pound since our last appointment. Most of that probably came in the last weekend because she has reverted to eating almost nothing since she has had this stomach virus. She has to start anti-pneumonia drugs by mouth this month for the whole month, probably for the next 4 months or so. I will now set up her next audiogram to test her hearing again, and her next set of MRI's, set for the middle of March. If this MRI is all clear, she will have her port removed. That would be the next milestone for sure.
There is some concern over her morning vomiting, which she has had a couple of times recently. Besides that, the times that she hasn't been sick, she has still felt poorly. This is a classic sign of hydrocephalus (fluid on the brain, usually caused by a tumor blocking the fluid, in the case of brain tumors.) There are other signs too of hydrocephalus or tumor regrowth that she doesn't have. We're going to give it a few more days to let this virus pass, and if she is still exhibiting these symptoms, she will see a neurologist. My question is, why see a neurologist, why not just go straight to an MRI, that would let us know for sure. Doesn't seem like they are quite ready to just move up the MRI yet. We'll see how it goes the next few days.
So all in all, it was a pretty nerve wracking day. I really don't think that she has tumor regrowth, but I never in my wildest dreams thought she had a tumor in the first place. So for now we wait and watch.
Oh, one more thing. We have a dog here up for adoption. Tod chewed the power cord to my computer tonight, so it's no longer working. When the power runs out, this is it (which means I have to buy another cord.) Until then, come and get him :)
xoxo Kim
Monday, Feb. 4, 2008
Well no problem getting up this morning for school, Hannah didn't go. She woke up this morning, said she felt fine, came out into the kitchen, then ran into the bathroom feeling sick. She did not actually get sick, but went right back to bed, and slept until 1:00pm! I kept checking her to be sure she was still ok, still breathing, no fever. She just still doesn't feel very well. We think she caught some sort of bug. She has had stomach pain, nausea and diarrhea now since Saturday morning. I hope it's beginning to get a bit better. After an entire day of eating only her beloved shake and 2 saltine crackers, she did have some chicken and beans tonight at dinner. She was still complaining that her stomach hurt, but she ate. At one point during the day today she called me into the room and told me she didn't want "the (feeding) tube." I told her that just because she had not been eating very well over the weekend because she was sick, didn't mean they were going to give her the tube tomorrow. We go into clinic in the morning.
Not too much else to report, we'll let you know how she makes out tomorrow. Please remember to send those letters to your Congressmen and Senators in support of the Conquer Childhood Cancer Act of 2007. You can click HERE to read about the legislation, but in summary:
Click HERE for the House letter AND HERE for the Senate letter. You just enter your zip code, and all the information is provided for you. Please take a couple of minutes to add your voice for a cure for pediatric cancer.
xoxo Kim
Not too much else to report, we'll let you know how she makes out tomorrow. Please remember to send those letters to your Congressmen and Senators in support of the Conquer Childhood Cancer Act of 2007. You can click HERE to read about the legislation, but in summary:
Click HERE for the House letter AND HERE for the Senate letter. You just enter your zip code, and all the information is provided for you. Please take a couple of minutes to add your voice for a cure for pediatric cancer.
xoxo Kim
Sunday, Feb. 3, 2008
Superbowl Sunday is in progress, so far could be worse for the Giants, not so bad. Wish I could say as much for the weekend. Hannah started off Saturday by waking up running into the bathroom to throw up. She continued to feel badly during the day, which resulted in an almost total lack of eating. She missed horseback riding, but we were able to go over to the annual Parrish Art Festival-where all the schools in the area showcase their work at the Southampton Parrish Art Museum. We go every year, and it's just incredible to see the artwork of the kids from all over. Some of it is really impressive. Last year Hannah didn't feel well enough to go, and this year she was crying that she didn't feel well again. We did make it there, just didn't stay very long. 
Here is Hannah with her friend Alya and their "Head of a Woman" Picasso replica (by the way Hannah is a penguin and Alya is a frog.) This was something special that Hannah was working on with her teacher, Mrs. Grossman, mostly during the time she was out of school for low counts. We would go into school sometimes in the afternoon, trying to steer clear of most of the kids. We would sneak right into the art room, and head right back out to the car.
It's really been a struggle to get her to eat at all this weekend. Right now she's here on the couch where she has been nursing her shake for over an hour. It tastes just like a vanilla milkshake, she just has it in her mind that it's bad and she doesn't want to drink it. It's very frustrating and very difficult each night to try and force this down over the course of hours. Tonight I drug her kicking and screaming and biting me into her room because I had had enough and told her I didn't care if she drank it or not, it was time for bed. So now we're all calmed down and she's trying it again (even though bedtime was nearly an hour ago and now we're in the vicious cycle of staying up too late, which will make it hard to get up in the morning.)
Anyway, thank you all for your wonderful comments on the blog. We love to read them, and do so each night. You all give us inspiration each and every day. It helps especially on days like today to get through it and keep on going. You may have seen the comment here from the Larsons-little Coleman is preparing now for his stem cell transplant, so please keep him in your prayers also. It's a very difficult thing to go through, it's about a year's worth of chemo in 5 days, in an effort to kill off all of the cancer, then a few days of recovery, then previously harvested stem cells (from Coleman's own body) are put back in to help his body recover. The hardest part is that after the high dose chemo, the body has no protection from infection, even infection from the bacteria normally inside our own bodies, so it's a very risky time. He will be in isolation, and you can imagine how taxing it will be on his body (and his parents.) For several months afterwards, he will need to be kept at home, with no pets, no fresh vegetables, no fast food, no visitors, and very strict home precautions. Coleman has to undergo all of this because his cancer came back after his first round of treatment. We know he'll do great, and pray that it is 100% successful!
I'll leave you with this video. It's a slightly extended version of the commercial that Hannah did with the Songs of Love Foundation. It shows a bit more footage of Hannah, click HERE to view it. The more times the video is viewed, the better placement Songs of Love gets on YouTube, so go check it out when you have a chance. Also, if you are reading this and your child has no yet received their Song of Love, it's free, it's so easy and they just love hearing it over and over. I would highly recommend it!
GIANTS WIN!!
xoxo Kim
Here is Hannah with her friend Alya and their "Head of a Woman" Picasso replica (by the way Hannah is a penguin and Alya is a frog.) This was something special that Hannah was working on with her teacher, Mrs. Grossman, mostly during the time she was out of school for low counts. We would go into school sometimes in the afternoon, trying to steer clear of most of the kids. We would sneak right into the art room, and head right back out to the car. It's really been a struggle to get her to eat at all this weekend. Right now she's here on the couch where she has been nursing her shake for over an hour. It tastes just like a vanilla milkshake, she just has it in her mind that it's bad and she doesn't want to drink it. It's very frustrating and very difficult each night to try and force this down over the course of hours. Tonight I drug her kicking and screaming and biting me into her room because I had had enough and told her I didn't care if she drank it or not, it was time for bed. So now we're all calmed down and she's trying it again (even though bedtime was nearly an hour ago and now we're in the vicious cycle of staying up too late, which will make it hard to get up in the morning.)
Anyway, thank you all for your wonderful comments on the blog. We love to read them, and do so each night. You all give us inspiration each and every day. It helps especially on days like today to get through it and keep on going. You may have seen the comment here from the Larsons-little Coleman is preparing now for his stem cell transplant, so please keep him in your prayers also. It's a very difficult thing to go through, it's about a year's worth of chemo in 5 days, in an effort to kill off all of the cancer, then a few days of recovery, then previously harvested stem cells (from Coleman's own body) are put back in to help his body recover. The hardest part is that after the high dose chemo, the body has no protection from infection, even infection from the bacteria normally inside our own bodies, so it's a very risky time. He will be in isolation, and you can imagine how taxing it will be on his body (and his parents.) For several months afterwards, he will need to be kept at home, with no pets, no fresh vegetables, no fast food, no visitors, and very strict home precautions. Coleman has to undergo all of this because his cancer came back after his first round of treatment. We know he'll do great, and pray that it is 100% successful!
I'll leave you with this video. It's a slightly extended version of the commercial that Hannah did with the Songs of Love Foundation. It shows a bit more footage of Hannah, click HERE to view it. The more times the video is viewed, the better placement Songs of Love gets on YouTube, so go check it out when you have a chance. Also, if you are reading this and your child has no yet received their Song of Love, it's free, it's so easy and they just love hearing it over and over. I would highly recommend it!
GIANTS WIN!!
xoxo Kim
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