Journal History
Click here to go back to the main page.
Friday, October 3, 2008 8:04 PM CDT
hmmm long time no update. I thought about it plenty of times...started one in fact but the cyber space monster ate it up. So I guess I will give a quick update of the last several months...
10th grade....she survived it and did pretty well. I would tell you her exact GPA if I remembered it..but that was months ago and my brain power is limited. Bad mommy. I believe it was 90 or slightly higher. I was proud and pleased.
Summer...way to short. We didn't do nearly the activities that we usually do. Especially camping which we love. Our buddies "the blondies" moved to the middle of no where which is very far away from here. We usually do a ton of stuff in the summer together. Really miss them. We did go white water rafting again which was alot of fun (although a bit more dangerous than last time). Brianna and Pete got tossed from the raft when we were stuck in a rapid (very scary) and Ris and I were holding on for dear life. B also volunteered again at a local hospital. One day a week she was on the adult oncology floor, another in peds and the third shift was with seniors. She enjoyed the experience but has definately decided she does not want to work in the medical field.
August brought B's sweet sixteen! On the top list of things to do that day was get her permit. So my girl is now driving. Where have the years gone....? The milestones bring such reflections.... She also went off to Camp Good Days again and loved it of course.
This school year is a tough one. She is on the swim team again and having trouble with her shoulder all season. She has tendonitis in her rotator cuff and now has to see an orthopedics specialist. She also has a dexascan scan scheduled next week (due because of the steroid treatment and to monitor the osteopenia). Her school schedule is going ok, but very tough this year. She is taking a SUPA course for college credit, plus 2 AP (advanced placement) courses. And she rejoined band after a 2 year break when it wouldn't fit in her schedule. Me, I got sick of my current job sucking the life out of me and finally decided it was time to start looking for something less stressful. I was offered and accepted a new position in the same department, just a different unit doing something different. I am hoping once I get on track that things will settle down at work a bit. If nothing else it will be a switch to a different kind of stress!
The last 6 weeks also brought on a renewed sense of HATE for cancer and chronic illnesses. My Dad's cancer relapsed after a 2 year remission from his transplant. (see link below) He has had a lot of problems with side effects from the recommended treatment to get him back into remission. He now has to receive the infusions inpatient instead of outpatient. Another loved one in our family has also been recently diagnosed with an agressive form of breast cancer. B lost another one of her friends from camp and many from my MOM's group are struggling with their kids illnesses. It is so frustrating that this beast needs to keep entering our lives :-( Even more frustrating to know that a cure (for cancer and many other diseases) is within our reach if only the funding for research could occur. Please keep our love ones in your thoughts and prayers.
hugs,
H and B
Thursday, June 12, 2008 7:08 PM CDT
YAY!!! Our hard work finally pays off!!!
Below you will find the Curesearch press release announcing passage of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This success has been the result of many things but the more than 20,000 letters sent by advocates to members of Congress about childhood cancer and this bill have been a key factor. This brings us all one step closer to enacting a law that will make a critical difference to children with cancer.
Thank you for your letters. Please take a moment to thank your Representatives and continue to contact your Senators to urge passage in the Senate.
FOR IMMEDIATE RELEASE
CureSearch Praises Passage of the
"Caroline Pryce Walker Conquer Childhood Cancer Act"
in U.S. House of Representatives
Children with Cancer and their Families to Benefit from Landmark Legislation
June 12, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the "Caroline Pryce Walker Conquer Childhood Cancer Act," which promises to significantly increase federal investment into childhood cancer research.
During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.
"For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources," said Pryce, original author of this groundbreaking legislation.
"The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering."
Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.
"I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer," said Van Hollen. "This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90f children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," noted Gregory Reaman, MD, Chair of the Children's Oncology Group. "Only research cures childhood cancer. On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders."
"On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority," said Stacy Pagos Haller, Executive Director, CureSearch.
Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
# # #
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children's Oncology Group (COG), the world's premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
Sunday, May 11, 2008 9:01 AM CDT
A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?" God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy." God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?" God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?" God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?" God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore." God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked,
"God, if I am to leave now, please tell me my angel's name."
God said, "You will simply call her Mom."
Happy Mother’s Day!
Sunday, February 17, 2008 10:55 AM CST
Brianna had her 1 year appointment at the KNOT clinic last Tuesday (2/12). At first I was going to rescheudule it because I had this absolutely insane thought that if she relapses, I don't want to find out on my sister's bday (2/12).Then the rational part of my brain took over and we kept the appt. It makes me so angry that after all this time that fear of relapse is always there in the back of my brain somewhere. I know it always will be regardless of how minute the possibilities are. Some things bring it closer to the surface and harder to ignore. Sean's relapse (caused by the treatment that originally was meant to cure him) is one of those. Mira has also recently relapsed. It just breaks my heart that these children have to deal with this cancer crap once again....
We are also coming up on the anniversaries of Andrew , Shannon and Breanna's passings. It's a hard time of the year....I can only imagine these families pain. :-(
Anyway, Brianna's appointment went well at 5c. We were able to meet Ryan and his mom Ruth for the first time. Brianna met with Sue, her np who is absolutely wonderful. Our appointment with her is scheduled to be an hour each time but we always go over because she is so thorough and thoughtful. I haven't received the note that she usually sends saying her counts look good yet (shut up stupid little voice in the back of my head that is concerned because we usually get them in the mail a few days later) however I am sure they are fine! We then met with the education specialist to discuss school and the educational late effects. Brianna recently got her report card and did well(B's and A's yay!)but still has a very hard time with organization and planning. Then it was then down to the lab for bloodwork. By that time we decided that there was little point of rushing to school and headed out to lunch together to pig out and bond. Did I mention it was also Brianna's "1/2 bday" and she is counting the days til she can get her drivers permit? Look out world! lol
We are once again looking forward to St. Baldrick's which is quickly approaching. This year my Mom, my brother Kevin and my cousin Mike will be shaving their heads to raise money for childhood cancer research and to honor Brianna's fight and her friend Breanna's memory. Breanna passed away after years of fighting an agressive form of cancer called neuroblastoma. Raising funds for research is becoming even more important because the federal government has recently cut funding for childhood cancer research. Please consider making a donation online to sponsor them or contact me via email. This is a GREAT event for a VERY WORTHY cause (and alot of fun!) Every dollar helps!
Well, that's it for now.....Please sign the guestbook so we know who has stopped by :-D
Sunday, December 23, 2007 9:44 AM CST
I've been thinking about update for awhile however sometimes I feel so negative so I don't. Work has been sucking the life out of me, incredibly stressful crap at the "mission impossible" which seems to operate under what everyone knows is a broken system. I do love my job (some days) although lately it just seems like to much. I am also very very pissed at cancer- that days ago we heard that Sean - a boy who was in treatment the same time Brianna was for ALL - has relapsed...like 7 years off treatment. This time its a brain tumor. He had the same clinic day that we did for quite a while so we spent alot of time in the playroom together. I haven't seen him in years, however I like to operate under the illusion that these kids leave the clinic and go thru life cancer free. I know its not a reality- however it devastates me when I hear otherwise. I can only imagine what his family is going thru. He is a senior in high school. Please keep his family in your prayers.
This New Years Eve will be 9 years since Brianna was diagnosed. Sometimes it still feels like yesturday. I have yet to get thru a New Years eve / Christmas season without thinking about it and reflecting on those years thru treatment. It still freaks me out. Reflection is good but sometimes I just want to be ignorant and forget everything I know about cancer. People think that once treatment is over, everything goes back to normal. They don't realize that the normal you once knew no longer exists and the shadow of cancer is forever in your life in ways you can't possible begin to imagine until you've lived the experience.
We are busy getting ready for Christmas- lots to do! Hopefully we will have a white Christmas. Today it is warm (mid forty's) and WINDY, melting the foot we got from the last storm. We are supposed to have some flurries and maybe lake effect on Mon and Tues. I hope so! We are also celebrating Boopa's 85th bday on Sat.
Happy Holidays my friends....
" MY CHRISTMAS LIST OF BLESSINGS "
My Christmas List is more
than just a way to keep track of
The special people God has brought
into my life to love.
It's like a treasured scrapbook
filled with pleasant memories
Of all the times God's answered prayer
through friends and family
Every name's a touchstone
that leads to a place and time,
Where God has used another's heart
to reach out and touch mine.
It may have happened years ago
or even yesterday,
But every person on my list
has changed my life some way.
Through simple conversation,
a warm hug or a shared meal,
Every person on my list
has helped me grow or heal,
Or laugh or love or learn or smile ...
the blessings never end.
As God allows our paths to cross
as family and friends.
So please know that this greeting
is more than a Christmas wish,
It's a "thank you" card to God
for putting on my list
Each and every one whose name
I've come to hold so dear ...
Those who've shown me Christmas joy
each day of the year.
- Author unknown...
Thursday, November 22, 2007 8:36 AM CST
This past month has been very difficult in many ways..My dad (www.caringbridge.org/visit/petek) was admitted to Crouse hospital and then transferred back to Boston to be treated for a lung infection that his body just couldn't fight. It was a touch couple weeks but thankfully he is home now and doing much better.
Kendrie's mom Kristie shared (and has given permission to be reposted) her analogy of cancer life and the roller coaster of emotions its brings on her website back in 11/03...it sums it all up, the "crap that life sometimes gives us" so well so I thought I would share it...
The Crap Sandwich:
Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes,“thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:
You: “excuse me, I didn’t order this crap sandwich”
Waitress: “house special. You got it without asking”
You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.”
Waitress: “well, you got a crap sandwich.”
You (getting upset) “well take it back and give me what I asked for instead!”
Waitress points to a sign that says “Absolutely NO substitutions”
You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to”
And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!”
And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”
Kristie, mom to Kendrie (age 6), pre-B ALL, dx 10-03 http://www.caringbridge.org/ga/kendrie/
Off treatment 12-15-05, wahoo!
Cancer has made me resentful in many ways.
I resent that “in remission” doesn’t mean cured. It doesn’t mean anywhere near cured. It means cured for right now. Today. A relapse could happen tomorrow; next week; next month; ten years from now. Do we ever get to relax?
I resent that for the rest of their (my) life, every time B or my dad complains of an ache or a pain, runs a fever, or has bruising I will fear in the back of my mind that the cancer has returned.
I resent long term side effects from treatment.
I resent that ignorant people in politics can even consider cutting funding to cancer research. I resent that they don't increase it.
But I am thankful....
so incredibly thankful for everyone that I have met along this journey...who have helped up through all this...so many caring family and friends..knowledgable and compasionate medical staff...thankful that there have been so many people offering kind words, a hand to help out or a shoulder to cry on when needed. Thankful for the friends and their children that I probably never would have met if cancer never intruded in our lives. They are souch a blessing!!! It is so comforting to know that there are so many walking this journey w/ us...thru the years past and the years to come.
Happy Thanksgiving!!
Sunday, October 21, 2007 9:03 AM CDT
It's been a busy month! Dad gave us a scare a few weeks ago. He is feeling ok now and going to Boston this week for a second opinion.
Brianna is doing ok academically. They were going to move her up to honors English but she convinced us to let her stay in just the regular regents English. We know she could do it, but she struggles ALOT with organizing herself and her coursework. She is so stubborn she had to do things her way, which may work fine however sometimes takes alot of emotional energy and extra time to accomplish stuff. She has a tough schedule this year.
Brianna won her swim event on friday (breastroke). Unfortunatly there was no family there to see it! :-( Usually I am always there and my mom goes to alot of them as well. Well my mom made a mistake and drove out to Cazenovia for the meet (it was actually a home meet and they were swimming against Caz) so she missed it. I got out of work (after an awful day), ran to the car (it was pouring out!) and realized that my car keys were in the front seat locked in. The parking lot is about a block from the building I work in so I was soaked. Instead of walking back, I found minimal shelter under a cement art sculpture nearbye and called my sis to see if she still had an extra set (her old car). Luckily she was home and said she'd be right down with a handful of keys that might work. Since she wasn't far away and again it was pouring out, I decided to stay under my little shelter vs getting even wetter walking back to the building. Well long story short, it took her an hour to get there due to rush hour traffic and bad phone reception, we were both miserable and I was having a total meltdown...none of the keys worked. Luckily she grabbed my extra house keys so we got my extra set from the house, went back and got my car and finally got to the meet just after it ended. And then B ran up to me all excited that she won, and then realized I missed it. I felt so crappy. And then I had to make things worse by telling her (again, cause for some odd reason she thought she could change my mind from the "hellllllll noooo" that I proclaimed last night) she was not spending the night at that party.
What party was I depriving her from?
This past weekend she was invited to a boys bday party. Come to find out it was a co'ed sleep over. It first, she wasn't to surprised when I laughed at her and told her she could absolutely no way spend the night and was ok with this. But Friday during school she found out that some of her friends were actually being allowed to sleep over and got mad that she wasn't able to. Now I can think of some possible occasions were I might maybe possibly consider allowing male friends of hers to spend the night at my house. There would be a million conditions though, (remember I said possibly consider, not definitely allow) and I would be pumped up on some major caffiene to ensure that I didn't sleep not even a minute that these kids were in the house. I mean come on. Regardless of how many provisions are in place to avoid any issues, a house full of hormones at that age is just asking for trouble. I remember being a teen. It didn't take a lot of time to get in trouble. There is just a huge potential for issues, no matter how 'good' the kids are or how watchful the parents...So I stuck my ground and let her stay til midnight. She was mad of course for being the first person to have to go home (sorry kid I was tired! but very thankful that I wasn't the only parent that said no). She has moved on to being mad about other things now, like her upcoming dr's appt on her day off from school (shame on me for thinking that was practical! lol) When we were at the pediatrician this week, we were discussing shots...she is due for many of them. The flu shot is a yearly argument, plus she needs a couple others. Throw in allergy testing (I think the minimum here was 13, more depending how she reacted to them) and the tetnus shot she had a few weeks ago and I don't blame her for feeling like a pin cushion!
Anyway...the lawn is calling me. I haven't mowed it in almost a month. I was hoping it would just stop growing but apparently that isn't the case. Seriously.....if mother nature would make winter only last 2-3 months, I swear I would mow it regularly!!!!
Saturday, September 29, 2007 9:21 AM CDT
Well Autumn is here! I love checking out the leaves etc however hate the idea of winter around the corner. We wanted to get in one more camping trip however I don't think it's going to happen. Once school starts it is so hard to find a weekend w/ nothing going on.
School this year is much better than last year. B has accepted the fact that she is here and being miserable isn't going to change that (although she still says she hates it). B is on the varsity swim team again, is doing well but has had a difficult time. She has lost some practise time due to being out for swimmers ear and then a foot injury. Alot of the gains she made last year she lost since she didn't swim year round. Hopefully she will be able to cut some more time because she really wants to get to sectionals. She is dissapointed with her schedule once again but I think that is just the way things are going to be here due to what they offer and her being in the mixed classes (she takes some 10th and some 11th grade subjects). So far she has been doing ok in the Math that she refused to take (mean mom and guidance made her try it) She has alot of tough classes though (Math B, Spanish 4, Chem, Honors Global). Organization and planning is still a struggle, I guess it always will be. My attempts to assist have been unaccepted as usually, along with a big battle last night about how I am "too involved" in her life and "nosey" etc (it wasn't just a school fight, she has a facebook account that had all her personal info on it which is against my rules). I was so mad that at 7am I was thinking...I'm to involved? Perhaps I should go back to sleep and she can walk 2 miles to swim practice? LOL I did give her a ride but informed her I was seriously considering it. She's mad enough at me now though because I locked the computer and told her she can't use it for a week. I really hate all this technology when it comes to kids. I do believe that now the screaming is over, I am getting the silent treatment. Our personalities are so similar it is quite a crazy relationship at times...
We had a great time at Light the Night walk with all our friends (minus almost getting run over by a few cars)It didn't seem to be as big or publisized as much as usual which is disappointing, especially with the funding cuts for research. Septemember is childhood cancer awareness month. Did you hear anything about it? CNN was supposed to do a special on it but got "floated". That just irritates the hell out of me. Especially when our children are still suffering and dying. Stephanie earned her angel wings...I didn't know her but heard she was a very special lady, met her parents a couple times. It just breaks my heart. I hate cancer!
Saturday, August 18, 2007 8:17 AM CDT
Wow...Summer is coming quickly to an end (big sobbing tears here!) We have been very busy trying to have fun, especially since last summer was so hectic and crazy. We are also doing the Light the Night Walk for the Leukemia & Lymphoma Society on 9/19. Please check out our website and join us (or sponsor us a few dollars - every dollar helps!)
In July we attended our annual Cancer Families bash at our friends the Grosso's house. As always, they put on a great party and it was so good to get together with everyone. Mom's night out (once a month outing w/ hospital moms) was great too. I had missed the last couple so it was so good to get out again...
We have been camping a couple times, our annual Memorial Day Weekend and 4th of July trips with the Kline cousins, our annual camping trip with the Hyde family and camping at Darien Lake for B's bday. I wish I knew how to put up alot of pictures on this site (pointers anyone?)...I have some great ones- new ones in the photo album. We hope to get at least one more in before the season comes to an end. Camping with the Hydes was great...we missed our trip the last 2 years so it was so great to escape for the weekend with them. We explored a nearby beach on Lake Ontario and took the kids go cart racing, along with the usual camp activities. Brianna and Clarissa went thru treatment together and our families became good friends thru the journey. They used to drive those nurses nuts! lol
For Brianna's bday (MY BABY IS NOW 15!!!), she decided she wanted to go to Darien lake and we camped nearbye for the weekend. It poured (w/ lightening) for a couple hours (after we had just changed from into our dry clothes of course) which put a damper on things...But after it cleared up the lines were minimal. Brianna, Allie and I (my Mom went with us also but decided no roller coasters after the first ride she went on -lol) were able to use an exit pass to jump the line for the Superman. Of course they picked the front car (thankfully the ride is quick!) All I could imagine was the car slipping off the rails from all the rain or one of the girls loosing a hand (cause you know their arms were up the entire time thru all those loops!) We bought a pic which came out pretty good (wish my scanner was working) The only downfall was when we got back to the campsite at almost midnight, the storm had collapsed half of the tent so there was a lake inside...The girls stuff was dry but my mom's stuff and mine was SOAKED. Luckily it was the last night there!
She also decided to have a friend party at the house (co-ed) next weekend. The girls will spend the night but the boys (2 brave souls) are going home at midnight. No idea how to occuppy a bunch of teens. Any suggestions?
Of course, Bri went to Camp Good Days for a week (which she LOVED as she does every year -see pic) and we also went white water rafting a couple weeks ago, something I have always wanted to try. IT WAS GREAT!!! I can't wait to go again next year- if anyone wants to join us let me know because we can get a group rate. We have a great pic of that too (again, darn scanner).
On Aug 4th we had a bbque with family and friends for my Dad to celebrate the anniversary of his stem cell tranplant last year. He is doing very well. His onc just took him off most of his transplant related drugs and he got his first set of baby shots. He is so lucky! Two people I know who had the trasnplant when he did (Andrew and Dale) both passed away during the first year. It is such a hard journey...we have been so blessed that he is doing as well as he is.
Brianna volunteered at Crouse hospital this summer and has decided that she probably does not want to work in the medical field anymore (to much gross stuff-lol). She is not looking forward to school starting again in a few weeks and of course we are having issues again with her schedule. She desperately wants to not take Math 11R (aka the horrible hard math - with the horribly hard Math B regents- that you will probably never use in life) and is trying to talk me into a different course. Academically her guidance counselor and Math teacher recommended her for it so I don't know what to do. I am just hoping this year is better for her. She is supposed to start swimming on Monday and will probably be in agony by the end of the week since she hasn't done regular exercise or swimming since last season. They have a new coach this year too- hopefully it will be a fun season!
(if the link doesn't work, copy and paste http://www.active.com/donate/ltnCNY/2093_Queen1472 )
Well thats all for now. Lot's to do! Please check out the pics and sign the guestbook.
Hugs- H and B
Wednesday, July 4, 2007 9:07 AM CDT
Happy Fourth of July!!
***TOMORROW MARKS 6 YEARS OF BRIANNA BEING OFF CHEMO!!!***
Summer is here and I am so hoping that fireworks don't get rained out tonight. I love fireworks, and Fourth of July fireworks symbolize to me an anniversery celebration of the end of chemo. We have a family bbque to go to (my little cousin enlisted in the Marines and will likely be shipped out within the next few weeks)and then plan on going to the fireworks later tonight. Then back to work tomorrow (UGH!)
Brianna finally got her report card and is thrilled to be out of school. It has been a ROUGH year thats for sure. Remember that Spanish III class that the teacher said she wasn't ready for...well she got a 98 on the regents and an overall grade of 91 :-D. She got a 92 on her science regents and an 85 on her Math A regents. Her math was tough all year though, she only has a 76 average for the course and is begging me to let her take the easier math next year (and the school is recommending she take the harder one). Decisions, decisions!
Brianna is starting her volunteer program at Crouse hospital tomorrow. This was something she really wanted to do before we moved (it was part of her curriculum at the other school). Now her interest has declined. She signed up for peds and oncology wing and got surgery, and favors instead. She also signed up for an extra shift in maternity. Part of the Favors dept is wheeling patients from different areas of the hospital. Anyone familiar with Crouse knows it is a difficult hospital to navigate and Brianna is HORRIBLE with directions, maps and anything related. It took her weeks to learn to navigate this little school she goes to. I am hoping this goes well for her. She would really like to get a summer job, unfortunately she won't be 15 until mid August and by that time swimming will start so she will be to busy anyway.
Other than that it is the usual summer plans. We are trying to make arrangements to meet up with friends for a few camping trips, but having a hard time with the dates. Brianna is looking forward to Camp Good Days and we have the Summer Family Cancer bash at the Grosso's coming up as well. We are also planning a celebration (at my house- YIKES) for my dad. His one year transplant anniversary is August 3rd so I am trying to get the house straightened out (aka, paint and finish unpacking -lol)Hopefully it will be nice weather!!! Dad is doing pretty well overall! He goes back to Boston at the end of July.
Well, thats it for now. I have to hurry and do some yard work before it rains! I have some little creature digging tunnels in my yard (moles maybe?) and is making the yard look awful! Anyone have any tips for getting rid of the creatures? The previous owners had it so beautiful, its a shame that my thumb is black. LOL
hugs,
Heather and Brianna
Saturday, May 12, 2007 8:53 AM CDT
Happy Mother's Day everyone!!
Brianna and I were unpacking some boxes last week and I was going thru some cards and stuff that I had saved. I came across some neatly folded tissues and couldn't imagine why they were in there...until I unfolded them. They were "tissue notes" from an angry 6 year old who apparently couldn't find any paper.
"I'M HUNGRY YOU MEANY MONSTER. WHY WON'T YOU FEED ME?!!! I'M GOING TO DIE OF HUNGER BECAUSE OF YOU SO I DECIDED I'M NOT LOOKING OR TALKING OR HUGGING YOU ANY MORE.
TRULY BRIANNA"
Ahhhh steroids....LOL. There were so many of those moments during the first year. The food she could put away was amazing. There was the night that we ordered pizza and breadsticks for dinner. I started eating w/ her then answered the phone or something. I wasn't really paying attention obviously as she quickly devoured the entire pizza (minus the slice on my plate) and most of the breadsticks....and wanted more! After maybe 1.5 hour or so I finally gave in to the tears and pleas and let her have the leftovers from the night before, 1 lg chicken breast with a plate of mash potatoes and gravy, and she was still saying that wasn't enough. During induction she quickly outgrew everything she owned. Her cravings were so funny...a jar of pickles (juice included), cold green beens and ketchup...I remember her tackling me on the couch one day screaming "I want beef! Beefy beefy beef!" over and over. When we got later into treatment and just had the weekly pulses of steroids it wasn't as bad because there wasn't as muchin her system. Plus I had gotten smart. We were regulars at Homestyle Buffet..I would just sit for hours as she ate plate after plate of food.
ahhh the memories :-D
My most treasured mother's day gift was in 2000 when she was 7, one of those letters the kids write to their mom's at the request of their elementary teacher. Mine hangs in a frame in the livingroom.
"Dear Mom,
I love you alot. I miss you when you go away. I could not have wished for a better mother. I was ment for you. It makes me proud to be your daughter. So next time I see a star I'm going to wish for your happiness. I love you more than you can imagine even if we fight sometimes. I love you forever. I love you always. No matter how old you grow to be, you'll always be my Mommy. Love Brianna"
I am so blessed. Thank you Brianna for being my daughter. I love you (most)... forever and always...and no matter how old (or tall!) you grow to be, you'll always be my baby!
xoxoxo
Saturday, April 14, 2007 11:04 AM CDT
Happy Spring!
I know, I am being hopeful here....especially since we are expecting more snow tomorrow. Hopefully that will be the end of it, as I am in desperate need of some SUNSHINE!
That's it for now.
Hugs,
H and B
Sunday, March 18, 2007 8:40 EST
I have started a new entry many times over the past 1 1/2 months, but just couldn't spit out the words. The past few months have been really rough in many ways.
Heaven welcomed Andrew and Shannon within a few days of each other. Our friend Breanna's one year anniversary to Heaven was a few days later. My Brianna took it very hard, refusing to go to school etc. Death is supposed to be for old people. It is so unfair! Sometimes I feel like I am surrounded by it. Dale made her journey to Heaven just a few days ago...she had her transplant right before my dad did. Michele (my friend) lost two young members of her family, one to a car accident and one snowmobiling.
It's heartbreaking, it really is.
Now that Brianna is a teen, she freaks if I put on anything that doesn't meet her approval. So there are many things that I don't elaborate on (or even mention) out of respect (aka fear! lol) for her. Our relationship has been very strained for quite a while with minimal improvement. We fight about everything. And most of the time, it isn't anything worth arguing about and we both know it but somehow it still ends up with both of us angry and in seperate rooms. It is so frustrating. We are both miserable a good portion of the time. Then I feel horribly guilty that I can't fix us, especially with all that we have been thru. Brianna still hates school, refuses to socialize or join any sports. I try to encourage her and we end up fighting about it. I don't know how to help her, and her only solution is to move back, as she views everything as my fault for moving her. I swear, I wish I had ESP sometimes, cause had I have known it would be this bad I never would have moved out of the city.
We went to 5c at some point last month. Sue took one look at us both and knew we weren't "us", which lead to a long talk about all the emotional crap we have been going thru. I swear sometimes I feel like I am really going to break. I am really trying to fix my life in so many ways, but feel like I am just banging my head against a wall and getting no where fast most of the time. Then I get pissed at myself for feeling that way, especially with all that is going on around us. One good thing, we have reached another milestone in the cancer journey...we don't have to go back for an entire YEAR! (although we may end up seeing the education specialist next fall if needed.)We got the neuropsyche testing back for the late effects. Overall, it is the same as previous, great strengths in many areas and very weak in executive functioning (planning, organization etc). So the 504 plan will stay in place with school. They also did some testing at regarding regulation of emotions etc and the results stated she is "clinically" depressed, low self esteme etc. Of course the kid refuses to go to counseling (another topic we argue about regularly) so hopefully me banging my head against the wall will fix this.
As a reread this to fix my typos, I don't even want to add this entry as it seems so negative...I don't mean it to be. My dad is doing well...some issues but all relatively "minor" in the world of transplant. Spring is around the corner. I've been thinking of exercising....(maybe even a TNT event in the future?) I will let you know if I ever get off the couch. lol
ok, that's it for now. St. Baldricks is next week- should be a good time :-)
Saturday, February 3, 2007 9:43 AM CST
Last weekend we were honored to join our friends at the Grosso's biannual cancer family get together. We had a great time w/ our friends and stayed til after 11 pm laughing and playing games. The Post Standard
and 9 News, came out to do a story on the connection we all have to each other. They both did a great job and many of us were drawn to tears when we watched the 6:00 news together.
It was an emotional day as well, as Shannon's family was unable to join us and had recently learned that Shannon relapsed for the thrid time. She has had two transplants already and doctors are out of options. Our hearts break for her family. Andrew is also fighting a relapse and just had a second transplant.
We were also missing Angel Brittany , Angel Jada and Angel Breanna, who all passed last year. I never met Jada or Brittany, but followed their websites thru their battles, and it was a pleasure to meet their families at Amy and Frank's house. Brianna and I were close with Breanna's family and our hearts break with them as they were unable to join us this time. It is so hard for all of us when we loose one of our special friends. Even if we did not know them well enough to be able to walk by their side in this journey, we traveled it with them and prayed for their cure. Each time a child is lost we not only loose them, but we loose a bit of the hope and security that we as parents cling to. It is hard to explain in words...But the fear of relapse always exhists for a parent, even years after treament is over. That is part of why was so good for us all to be able to gather together.
We also gathered a few weeks back to say goodbye to Dr. Dubowy, the head of the peds team at University Hospital. He is moving on to a research position to help find a cure for chidhood cancer. While he wasn't Brianna's direct oncologist, he took care of her regularly when she was inpatient and is a brillant man. We wish him all the best. It was great to see some of our old friends that we haven't seen since treatment. I put a new picture in the photo album of him and all the kids (It took me over an hour to figure out how to add all the hyperlinks above, so putting it in the photo album was much easier than putting it on the front page)
On the home front, Brianna still hates her school and academically it is becoming more difficult for her and it is very difficult for her to catch up after missing just a day or two. Report cards come out soon and she has already warned me that she thinks her grades have declined. I will be meeting with the psycologist that did her neuropsyche testing this week. It will be interesting to see how her results are interpreted and if the late effects she has are progressing. We also go to the KNOT clinic this week and I think after this appt, we will be seen only once a year. That is a huge milestone!
Dad is doing well and is seen in Boston once a month now. He has some signs of graft vs host (GVH) on his skin, but that is ok as long as it doesnt get out of control. Some GVH is actually good as it can kill any residual cancer cells that might be hiding.
Oh, I am not a big football fan...but this superbowl I ask that you cheer for the Colts, in honor of Baby Donavan,. Baby Donavan fought leukemia his entire life and after 3 years and 5 relapses he passed away on January 20th. Even at age 3, Baby "D" is a great fan of the Colts and wanted to go to the Superbowl. His mom Melissa will be there on Sunday w/ a poster of him instead.
Well, that's all for now. Hugs,
Heather and Brianna
Thursday, January 4, 2007 5:31 PM CST
Happy New Year!
It's now been 8 years since Brianna was dx with cancer (New Year's Eve 1998) and our lives changed forever. Cancer doesn't consume our lives daily, but most days I still think of it in some aspect, even if just for a moment. Anniversaries still suck. 8 years...in some ways it feels like forever, in other ways it is like yesturday. I still think of everything leading up to dx...the bruising before xmas, watching them multiply and counting them to make sure it wasn't my imagination, the dr appt on New Years Eve which lead to being admitted and the dx later that night. We watch the NY fireworks from the hospital room, and saw them in Disneyworld on tv. I remember Brianna telling the nurse we were going there in just a few days, and holding back the tears knowing that somehow I would have to tell her that now we couldn't go, wasn't sure when we would ever be able to now, and that we would be in the hospital starting her chemo. The day we were supposed to leave for Disney was actually worse than dx day...she had her first spinal and bone marrow done under conscious sedation. She screamed and begged me to save her from the people holding her down injecting poison into her and I couldn't do anything. How could I even begin to explain that the horrible torture she was enduring was us trying to save her? I will never forget the look of fear in her eyes or how I felt that day. Its like it was yesturday...I can feel it in every cell of my body.
Cancer seems to be the gift that keeps on giving, in so many ways. I think of all the people we met thru this journey, some very wonderful people that I probably never would have met otherwise. I still think of all the children we have lost along the way....each year the numbers grow and it sickens me. I have not forgotten them. This past year Brianna lost another friend from cancer and it effected her tremendously, more so I think than others in the past. Perhaps because they were closer, spent more time together, and she is older now.
I feel haunted by cancer. Just a commercial or a certain song can bring me into a tearful panic of rememberance. It is all still there, right under the surface. And the what if's never go away. IT has been a rough year. Cancer is still such a huge part of our life, esp with Dad's relapse and transplant. Even when it is subtle and things calm to "normal", it is always in the background. Just new stages or normal that keep evolving. Brianna is lucky in terms of late effects, not nearly as bad as they could be, but some are still there. I always wonder, is this from cancer, or is it normal stuff that we would be dealing with anyway? She is having her neuropsyche testing done again in a few weeks. I think after our next appt at the hospital (which believe it or not, I have no idea when it is) she will be on a yearly schedule. My dad is doing ok from his tranplant and goes to Boston monthly now. Hopefully he will continue to do well and this will be the cure for him. Overall...life is good and we are thankful...
Monday, October 16, 2006 6:39 PM CDT
It's been forever since I have updated....life has just been soooooooo busy lately. We also have been downgraded to dial up since we moved. Unfortunately we happened to move on to one of the 4 streets in our area that does not have dsl. I don't want to switch our email addresses AGAIN, so I have been holding out w/ dial up (verizon)for a few months to see if dsl is really "coming soon". Apparently it is not so I am gonna have to figure out an alternative plan, not sure whether I will go to roadrunner or what but I can't handle this slowwwwww speed.
Well, we have moved. It has been one pain after another, starting with my idiot realitor, to the idiots at Uhaul, to the idiots at Verizon. If anyone wants to know who NOT to do business with, Nick of Gallinger...such a lying sleeze!!! The seller's realitor (Mary, also of Gallinger) was much more helpful than he was. Uhaul lost our reservation and gave us the smallest truck even though we ordered the largest...And verizon, I could go on and on about the problems I have had with them since we moved....
We are trying to get settled and make this place home. It desperately needs to be personalized. Brianna started by painting her room purple and turqoise. It looks cute. Her transition to the move has not been easy, and is still much harder than I ever thought it would be. For a while, I was hearing daily how miserable she was etc etc. She is slowly adjusting to the new school, but missing her friends alot (mind you they are only 10-15 min away). Her scheduling was difficult cause the school districts do things differently. She is in a combination of 9th and 10th grade classes (she in 9th)... She signed up for swimming and is on the varsity team again and doing great! Last week she swam her best time on 100 breast...1:27 She has been swimming breatstroke for most of the meets and has a really good coach. We might check into swimming all year if she doesn't do any other sports.
My dad had his transplant on 8/3/06. www.caringbridge.org/visit/petek IT was rough going for a while. He is home now and doing ok. He goes back to Boston once a week for check ups and testing. Last week he had a test to determine how much of his blood is new cells and how much is his old cells. We won't know the results until his next visit on 10/20. The last time this was done it was 50/50 (which was down from like 90 new/10 old) Hopefully things have changed and it is now more new cells vs old cells. We dont' want his old cells to take over otherwise he will relapse.
Well that's all for now. Please keep my family in your thoughts and prayers.
H and B
Tuesday, June 27, 2006 10:12 PM CDT
Stop the world, I want to get off!
That is my moto lately, as recent events have made life one long roller coaster (more on that after the most important news)
Brianna has graduated! My baby is an official graduate of Junior High and next year she is off to HIGH SCHOOL! I can't even believe that my baby is so old. Brianna graduated with honors and was presented with 2 awards at graduation; one for participating in 3 or more sports during the year and The President's Education Award. She will be starting high school with 3 regents credits already completed (2 years of Spanish and Earth Science) and since she was in accelerated math, she will be set to take the Math I regents next January. I am so proud of her!
Interestingly, this month will mark 5 YEARS OFF CHEMO! We celebrated both events with a family party and food of course :-) and she plans on having a get-to-gether with the girls in a few weeks (don't ever try to schedule a party on graduation weekend cause everyone will be at their own parties!)
It was a bitter sweet celebration as within the last week two children I "know" thru our caringbridge community have passed away from cancer. Please keep Brittany's family and the family of The Amazing Jacob in your thoughts and prayers. I can only imagine how difficult what they are going thru is. It is amazing how you can feel so close to people you have never met in person, simply because you share the same fears and have walked down similar paths in life. I cannot say that I have ever been thru what they are going thru, but I have imagined it a million times and every time I hear of another child's relapse or passing, it brings all those feelings to the surface as if you are just hearing the diagnosis for the first time. Not only do you grieve for your friends, but you grieve for the time when you didn't have these horrifying fears always intruding into your mind.
Also, we (or should I say "I" since Brianna has refused to look at it) have found a house. After a stressful bidding war, some stressful moments at the bank when my contract was written up wrong, and some more stress when the sellers thought they wouldn't be able to move until about 1 month after we closed which would create huge issues, it looks like we will be moving at the end of the summer, hopefully before school starts. It's in a good district (although not the one we are in currently) which was why I went to look at it. It's a ranch, which typically I don't like however its mechanicals are newer, location and schools are good and I am sooooooo sick of looking at overpriced crap. I think once we have had time to settle down and personalize it, things will be ok. Brianna however is refusing to move and hating me for buying a house that will require her changing schools. I am praying I am making the right move for her and that she will adjust quickly. I must say that I am so fed up and stressed out with the entire process of buying a house that renting forever doesn't sound like a bad idea at moments! More than once in the last few days I have thought that I was going to pull out, if for no other reason that the timing is crazy! However a quick look at my apartment and all the things the landlord should be attending to and I am reminded that I need out of this place.
In the midst of all the house stress (somewhere after the offer was accepted and I was ready to pull out all my hair from dealing with B's daily resistence) my Dad called with a date. They have found two umibilical cords that match close enough to use for the tranplant. So about the last week of July he will be traveling to Boston for an stem cell transplant. He will be there about 2 months, then will travel back and forth for a while. Ideally, he should have someone with him to help advocate for him etc, as he will be very drugged and in pain once his immune system is killed off. Initially they wanted him to have a "mini" transplant but since they couldn't find a suitable match, this is the only way to go. The side effects and risks are more severe and I am scared ********. It will definitely be a very difficult time for us trying to arrange to be with him and deal with life at home as well. I honestly have no idea how we are going to be able to work it all out, throw in my buying a house in the mix and changing schools with an angry teen and just thinking about it overwhelms me. I have no idea how I am going to be able to manage my caseload at work (and of course my cases are going to hell and have a million things that need to be attended to) and try to get time off to do all this. I'm trying to plan ahead in regards to everything but it is just impossible at this point so....
One day (hour, minute) at a time for now. Please keep my Dad in your thoughts and prayers..His website is www.caringbridge.org/visit/petek
Hugs,
Heather and Brianna
Saturday, May 20, 2006 8:45 AM CDT
Sorry- I have been incredibly busy lately! Several people have asked about updates so I am trying to get in a quick one before I am off to help get ready for my sis Eryn's college graduation party. Of course, since the party is outside....Syracuse weather has cooperated fully by providing an overcast, rainy 50 degree day. :-(
I have to say I am sooooo proud of my sis. She is graduating with a degree in Pyschology/Child Life Specialist. So she will be side by side with the little ones while they are in the hospital, explaining proceedures and helping them with play therapy etc. I am sure Brianna's experience was a seed beginning Eryn's career goals.
Brianna is doing quite well on all fronts. Medically, we went to our KNOT appointment (Kids Now Off Therapy) last week. She will have another appointment in 9 months, and after that is once a year! Woohoo! We also had a great time with the Grosso family; Frank was honored as Man of the Year for the Leukemia & Lymphoma Society. http://www3.caringbridge.org/ny/isabella/
As you can tell from the pic above, she is in track again this year and doing quite well. This year is obviously the year for her and sports, as she has participated in something every season (varsity swimming, volleyball, basketball, track, plus the school musical). She is a distance runner and won one of her events (800 m maybe?. That one seems to be her favorite. Each meet her times improve. I wish I could have her worst time! She is usually between 6 1/2 and 7 min for a mile, which I think is incredible. The HS track coach came down to check them out and told her that he wants her on the Varsity Cross Country Team next year. That's TWO varsity sports she will be on if we stay in the city. Of course my plan was to move out of the city, so I will be "ruining her life" if I do so. The problem is that the other school districts we are looking in are mainly larger, very competitive schools so if she makes their teams, it is very unlikely that she would get the same amount of play time, or be on varsity as a Freshman.
She is on honor role again (or as she would emphasize)missed high honor by less than a point). She has her high school schedule all planned, a very full schedule I must say! She will finish her hs credits early since she already has a few of them, and will be taking college credits by 11 th grade. She is considering premed or teaching...
Still house hunting...bad topic...I am soooo frustrated it is unbelievable. Because of the type of loan I have, I am not locked in w/ my rate. Of course, it hasn't increased in years, but since April 1st, it has gone up 3x's. I am still at a good rate but each time it goes up, my price range goes down a bit, and I just can't seem to find what I am looking for. Or when I find it, I loose it. Long story on that one, but it has to do with my realitor. Very annoying!!!!
well, got to run! I'm late (no surprise there!)
Saturday, April 8, 2006 3:47 PM CDT
We had a GREAT time at St. Baldrick's last week.
The initial total at the end of Sunday's events was $173,591.42 raised for childhood cancer research!!!! And checks are still coming in.
My mom is almost to her goal of $1000, so please consider making a donation in her honor (doesn't she look beautiful bald!) Whether you choose to give $5 or $50, every dollar donated will be one step closer to curing childhood cancer, the #1 disease killer of children.
To sponsor Sue, go to Save our kids , or email Sue at Skline@ocmboces.org to arrange a cash or check donation.
I have been trying to figure out how to put a link to the video clips I took, but have given up. Computers are not one of my strong points, that's for sure! To view the other pics we took, go to St. Baldrick's pics or Kitty Hoynes and click on ST. Baldrick's pics
A little surprise came last week. My dad's onc, changed his transplant location to the Hutch, which is in Seattle Washington! A bit farther away than Boston. After a lot of confusion regarding a lot of different details, the plan of attack is back at Dana Farber (Boston), the difference is now they are looking at cord blood as an option for transplant. With cord blood, the match doesn't have to be as close. When he was initially put on the transplant list a few years back, cord blood wasn't an option for adults. Now it is and since each time he relapses his treatment options get fewer, they want to transplant him now while he can still achieve a good remission. He has to loose 30-40 pounds and hopefully they will find a match in the next few months for him and things will progress as smoothly as possible.
Another bit of excitement is that Brianna is the proud recipient of a scholarship to MPH, a local college prep school. This scholarship is worth almost 11,000 per year (9-12 grade) and is an incredible accomplishment! I am so proud of her :-D The only down fall is that it would still cost me almost 25,000 if I sent her there for high school, which is not very possible on my salary. I have applied for financial aid to see if there is any assistance and should know something within the next week or so.
And....we put an offer in on a house today. I am so nervous!!! I am still kicking myself for not offering more for the other house I wanted, especially since what I put in on this one would have probably been accepted and I liked that one much better (it was closer to work, had a fireplace and wood burning stove, a first floor bedroom and a pool. This one is nice too, different area, no pool or fireplace. It would be a great house for a larger family, 4 bedrooms, family room and partially finished basement...so I am thinking if I don't meet Mr Wonderful and have more kids I am going to be pretty lonely and in a huge house when Brianna moves out. I am not sure if I am having cold feet or regrets!
Oh well, time will tell. Wish us luck!
Sunday, March 12, 2006 7:58 PM CST
Hi everybody! This is Brianna,
I have some sad news. Recently one of my friends Breanna Bartelli became one of Gods Angels after a 8 year battle with cancer:( She is missed alot. Anyone who wants to send condolences to her family her CaringBridge page is Breanna's site or Breanna's obituary and guestbook
Other then that nothing much is going on.
TTYL
Bri
Sunday, January 8, 2006 8:59 PM CST
Happy New Years!
The holidays and the New Year always mark the passage of time...the good and the bad...It was New Years Eve 1998 when Brianna was diagnosed with leukemia. That was SEVEN YEARS ago! I can't believe it. I really can't. There is so much I could say...but only one who has been there will "get it" and those who "get it" don't need to hear the words to know what I am talking about.
Brianna has decided that this is her year to be extremely busy and try out for every possible activity at school. Volleyball season has come to an end and now its on to Basketball. She tried out and found out she made the team on Friday. She also has a part in the school play. Grades are ok...same issues....
B went for her repeat dexascan a few weeks ago and they found an improvment in her bone density. I also took her to the nutritionist regarding her diet, osteopenia, being vegitarian etc. Since she doesnt like a lot of the typical foods vegitarians eat it is difficult to make meals w/o meat. We are trying some new things and hopefully they will work out.
Well that's it for now. Please sign the guest book!
Hugs, Heather and Brianna
Wednesday, November 30, 2005 6:51 PM CST
Happy Thanksgiving!
A little late...so sorry.
So I will be a little early to wish you a Merry Christmas, Happy Hanuka, Happy Kwanza, etc etc....
Brianna is doing well and got good updates from her ONC. She has been treated for her first ear infection of the season, gotten her flu shot, and bribbed by mom with pizza, soda and dessert so she wouldn't hate me afterwords. SHe goes back for a recheck on the ear tomorrow, her MMR shot (needed to be retaken cause the chemo killed her antibody to it) and some more bribery w/ a treat out to lunch/late going back to school after the docs.
B is still in volleyball and is trying out for the school musical sometime soon. I am sure she will make it, just unknown what part she will get. Her first report card of the year was very good. She made honor roll and lowest grade was a 79 in math, mind you that is regents 9th grade math. So I am very impressed and proud. She has managed to loose (really lost for good this time) her planner so she is even more disorganized that usual, and LOST her winter coat. Don't even ask how that one happened cause I am not real sure of it myself. I must say I am very irritated at that, esp since all the sales this year dont even come close to comparison in price.
My dad has started chemo again, had his first round last week. Complications of course with rigors, super high blood pressure, etc etc. So now they are totally drugging him up with premeds before to try to decrease the reactions and have slowed his infusion rate down. Hopefully that will help alot. He has his next cycle starting Dec 12th I believe. I had the pleasure of going to a CLL conference and meet some wonderful people on the CLL listsserve. Armed with new resources to learn and teach the family- lol.
Still house hunting. I have seen some nice ones but nothing that screams "live here". The one I really did like the layout of, I was talked out of because it needed a new roof plus some other stuff...and I was told I would probably find some unwelcome surprises...Oh well. The realitor asked me today if I wanted to look at every house in the city. I replied yes, and don't forget I'm looking in other places as well- LOL But I am committed to my goals. In the last year I have changed jobs 3 times, increased my salary significantly (although who couldn't use more??!) and found a job in my field actually utalizing my degree. By my next bday (April) I want to be in our new house. After that, I will be working on getting situated and perhaps if life isn't to stressful... becoming a foster parent with the potential of adopting. Hey, who says you need a man? (yah I know alot of people do, I've heard it but all I have to say is hey- find me a good one...) These kids need homes and I want a big family. So I am definitely considering it. And because I work in foster care and am already taking the classes required to be a foster parent, I am part way there already. Of course there is all that paper work etc to do. Like I don't already have enough mountains of paper! LOL
Oh well, enough for now. Got lots of stuff to do! Sign the guestbook PLEASE!
hugs, H and B
Saturday, November 5, 2005 12:08 AM CST
Been busy, busy....going to the KNOT clinic next week so I will add any comments about that later. I am expecting nothing unexpected- LOL, good counts, a lecture for not yet seeing a nutritionist (as a result of no insurance for 3 months, a very uncooperative teen and a fed up mom)Insurance issues have been a nightmare the past few months, things that should be simple never are. Hopefully things will begin to resolve soon, but it has been a pain in the *** so far and really trying my patience. We have to schedule her bone scan and flu shot soon too, she is thrilled of course. Ah, the joys of dealing with a strong willed teen-ager (I hate that word! I can't believe she is that old!)
Swim team has come to an end although we still will have some get together events throughout the year. Brianna did really well and has quite the muscle tone on her. She helped with a fundraiser for their scoreboard and swam 200 laps of the pool during the swim-a-thon and was the top fundraiser of the team! She has made the volleyball team and is really excited about that. Last year her cast had just come off and she wasn't strong enough. I missed her first meet because I had a wonderful reaction to an antibiotic giving me 102' fevers and body aches like a truck ran over me. Her team won 1 out of 3 games.
We (or should I say I) have been looking at houses to buy. I am so sick of renting and dealing with looser landlords who don't want to fix or maintain ANYTHING! I wish I could find my perfect house, in my pathetic price range NOW! Brianna does not want to move out of the city because she won't be on the same swim team next year. I understand her position and think her swim team and the families are wonderful and it's unlikely we will find such a close knit team somewhere else. Howver, I think it is best to get out of the city cause the school district has so many issues and I think she will be more prepared for college, and safer elsewhere. She decided she would move in with her grandparents instead until she realized they didn't live in the city boundaries and she would then be in a district without a pool. So now she is committed to living in a cardboard box- LOL I can see happy times ahead when I find my dream home.
Not sure if I mentioned my dad lately. We found out that his CLL (leukemia) relapsed and he is going to need treatment again. They moved up his foot surgery to mid Oct.(needed because of his broken foot last year) and will start the chemo again sometime after it has healed enough to proceed with the treatment. They still plan on going thru with the transplant if they ever find a suitable match.
That's all for now. Please sign the guestbook! Hugs,
Heather and Brianna
Friday, September 16, 2005 5:11 PM CDT
Brianna's now officially a TEEN-AGER!!
We celebrated her birthday this year by going camping for the weekend with a friend of hers (Allie) and by taking them to Seabreeze Amusment park. They had a great time and also ran into my godson Jacob there. The following weekend Brianna had a few of the girls over for a sleepover party (see photo page). Even though they were up all night they actually let me sleep a few hours. Isn't that sweet? lol
School has started. She is in 8th grade this year and has made the VARSITY swim team for the high school! I am so proud of her! She has been very busy swimming like a fish. They have practise 6 days a week for a few hours each day, plus 1-2 swim meets a week. She is doing very well considering this is her first time doing any competitive swimming.
I am STILL training for my new job in Buffalo. Every other week since July I have been going out there which has been quite the pain for life at home, especially since school has started. I only have one week left to do out there (last week in September). I will still have local madated trainings etc but hopefully no more out of town stuff. Then maybe I will have an idea how much I like it.
That's it for now. Take care and don't forget: September is Childhood Cancer Awareness Month. We are also participating in the Light the Night walk for the Leukemia & Lymphoma Society. Please make a donation of any amount to help save lives. The link is at the bottom or you may email or call me.
Heather
Tuesday, July 5, 2005 8:33 PM CDT
A very long overdue update...so many times I go to get on because there is stuff to be shared, yet for some reason it seams to take me forever to do these updates.
Lame excuse I know...But no news is good news as far as the medical front is concerned. Brianna is doing well, had a sprained foot and was on crutches for a few weeks back in June. We were worried it might be a stress fracture but the doc decided against it, thankfully! 3 broken bones (2 incidents) in one year is more than enough!
She passed 7th grade with flying colors and is counting the days til she is 13. 13!!!!! I can't believe my baby is going to be a teenager with one more year til high school. We have been thinking of buying a house lately and getting excited with the idea. Won't be anything that happens to soon but it will be nice to not have to rent and there is really no point of putting it off any longer. Not even sure where we want to live but I would like to get out of the city a bit, but within 1/2 hour away. Considering maybe Bville, Caz or West Gennesse school districts cause they are supposed to have some of the best high schools in our area.
And, I am starting a new job next week. I really like the people I work with at the school district but I got offered a job that I origninally interviewed for last fall and starting pay is significantly more than I am making now - A caseworker position at DSS Children's Division (child protective) It does have its drawbacks/concerns though... obviously the emotional aspect of it, I will be using my own car (aka rustbucket) for home visits which means I will need a new one at some point in the next year or so. The benefits (time off) and insurance aren't as good there...so that has me worried of course. And I am starting all over again as the new person "earning sick time" etc... And all the time I have accomulated (not a ton but about 25 days) I loose. Had I been smart I would have planned things a little better but oh well. Also, I have to go to CORE training in Buffalo, which is hours away from home, meaning that I will have to stay out there which I am dreading. Not only will it be a pain in the ass but it pretty much ruins our entire summer as far as making any plans to go away etc. And anyone that knows me knows I live for summers. Oh well. I am hoping this is a good move for me and B.
Well, thats it for now....Happy Summer!
Hugs, H and B
Sunday, February 27, 2005 4:27 AM CST
St. Baldrick's has raised over $73,000 and donations are still coming in! Over 60 people shaved their heads to raise funds for childhood cancer research. Thank you!!!
Join us at St. Baldrick’s!
In honor of local childhood cancer survivors, brave volunteers’ nation wide will celebrate St. Patrick’s Day by agreeing to shave their heads bald to raise funds for childhood cancer research. The primary beneficiary of this event is CureSearch National Childhood Cancer Foundation - which supports the Children's Oncology Group - the world's foremost childhood cancer research organization. More than 90 percent of children with cancer in North America are treated at more than 200 member institutions, including The Center for Children’s Cancer and Blood Disorders at University Hospital in Syracuse, NY.
When: Sunday, March 13th, 2005 about 2:00
Where: Kitty Hoyne’s Irish Pub and Restaurant,
301 W. Fayette St. Syracuse
Directions: From E. Adams St., turn left on Irving Ave - .04 miles. Turn left on Fayette St.,- .09 miles
Phone: (315) 424-1974
The public is invited to join the fun and come support this event. Event organizers are asking for pictures of local children and teens whose lives have be touched by cancer. If you or someone you know would like to be honored, please contact me for more information. This is an annual event held nationwide. We would like to see it held locally EVERY YEAR so that more funds can be raised to save our children!
PLEASE COME OUT AND JOIN US!
To make a donation, become a “shavee” or find out more about the event contact David Hoyne at 424-1974, or David@KittyHoynes.com or go to: http://www.stbaldricks.org/location_detail.asp?citycode=USNYSY
Sunday, January 22, 2005
The cast is off! The cast is off!
Xrays show good healing progress and she can go back to gym in a few weeks. Hopefully this will be the last broken bone! THe xrays of her back/shoulders showed a slight curve but he said we will just keep an eye on it as she grows.
We are now buried in snow in a deep artic freeze. Over a foot in sub zero weather. Yuck!
Monday, January 3, 2005 4:45 PM
CST Sorry...been busy, busy, busy w/ little time to update. Holiday season was hectic, especially since I refused to believe it was approaching until it was right on top of me. Just wasn't in the mood this year for holidays. I also started a new job working for the Syracuse City schools in the payroll department. Very busy with lots to learn and memorize. The people all seem very nice and it is very similar to working for BOCES (food around all the time, hot as hell in the winter and cold in the summer, sitting down in front of a pc alot). I have a feeling I won't be loosing much weight. I have become so inactive that my body disgusts me! And unfortunately I have found little initiative to change it. Brianna and I are supposed to join the YMCA for her strength training, but I have to find the time to get us there (and attend!) as well as the money. My nimo bills are already breaking me and winter has barely started.
Another anniversary has come and gone...it has now been 6 years since Brianna has been diagnosed. I could say so much but don't even know where to begin...especially with all the recent caringbridge deaths and relapses. So often it seems like it is only my online family and and friends who check this site (sign the guestbook damnit!) and since there have been others from our online "family" who have explained it all so well, I won't even try. (hmmmm can you tell I am just not in the mood to be sociable yet felt obligated to update?)
Brianna has been doing ok, but declining in school. Her grades are suffering because she is missing alot of work for a variety of reasons (abscences, not following thru to find out what she missed, teachers not accepting late work, being unprepared etc) Her 504 plan is now in writing so hopefully it will help. Among other accomadations, each teacher is supposed to check her planner at the end of each period to make sure she has written down what she needs to do, and what she needs to do it. The resource teacher is also supposed to come and find her at the end of the day to double check everything in case she wasn't in class. Hopefully this will help her organizational/memory issues. Another issue that has made things difficult with school is she broke her wrist in two places the Saturday after Thanksgiving :-( Of course it is her right wrist, so she is having difficulty doing things again. So far the majority of 7th grade has been spent in a cast (remember she broke her right hand the 2nd week of school). Now a bone specialist is involved. She goes back again tomorrow for more xrays to see how its healing and perhaps more testing as a result of the osteopenia. When she was in two weeks ago, I mentioned about her shoulders being uneven and shoulder blades sticking out so much, so the doc is also going to do xrays of her shoulders. I am not sure what he is looking for, but I must say I am a little nervous. I am not sure what to expect. Fortunately, my new boss is pretty lenient and I can take off to bring her, just have to make up the time.
Well, that's all for now. I have a preteen buggin for the computer. Seeing that it is homework she has to do on here, I guess I should be a good parent and give it up- ha ha.
Hope everyone has a happy and healthy New Year!
Hugs,
H and B
Saturday, November 20, 2004 10:11 AM CST
Wow. I have been meaning to update this website for some time now and haven't. So I will probably forget half of what I should be sharing...oh well.
Hmm. On the medical front. Brianna had her first KNOT appointment. (Kids Now Off Therapy) It went pretty well. Alot of the info I already knew, and I had the Childhood Cancer Survivors book already. Two things of importance: Since Brianna had steroids, and easily broke two bones (hand and wrist) in less than a year, her pediatrician wanted her to have a dexascan. The KNOT clinic didn't think it was necessary because a few years back her bone density was messured on a chest xray as being fine, and bone issues aren't typical for the protocol B was on. Well when has she ever been typical? LOL Luckily, the ped had already made the appointment for it, cause it showed that B has osteopenia in her spine and hip bone. Not considered bone loss yet, but we need to address it. So for now, it is a high calcium diet, multivitamin every day and strength training, and repeat dexa in a year. Issue two: did I ever share the results of the nueropsyche testing B had last spring/early summer? Well, issues of concern were pretty consistent with previous testing. Very poor (less than 1n some of the tests that messure it) visual spatial and executive functioning skills. One note was that her processing speed decreased significantly. Also, there was some evidence for lateralization of deficits which would not be explained well by her ALL treatment, so an MRI of the brian was recommended to rule out other pathological processes. Again, the KNOT clinic didn't think this was warrented, because she had an MRI of the brain back in 2000 and it didn't show anything of concern. Not sure if I should pursue this or not, and what we would do with any result if something did turn up. We don't go back until Feb or March.
Brianna got her report card back and did very well. Made honor roll so she is eligable for the skating party field trip next week (and mom is eligable to pay $7 so she can go- lol) I had a meeting with her teachers regarding updating her 504 accomadation plan to mmake it more appropriate for jr high school and it went pretty well. The last time this was done she was in 4th grade, so its time. We have to go in Dec 15th to make the suggestions official, but I don't think I will have any problems this time with the recommendations. She will still get the extended time on testing, as well as some additional help with organizing herself so she has what she needs for homework, etc. She also is allowed to print now without any grade reduction, instead of her illegable cursive. Minor but important issues that should help alot.
Let's see...she tried out for Volleyball but got cut :-( The next thing she is considering is either basketball or track. She also plans on trying out for the school play. She is such a drama queen. Hmmm not sure what else...I know I will think of something as soon as I hit the update button. But I guess that's it for now.
Happy Thanksgiving!!! Hugs, H and B
Sunday, September 19, 2004 12:52 AM CDT
First of all, a very overdue Thank you to Miss Julianna Banana, for including Brianna in the Banana awards (check out Julianna’s web page at: www.caringbridge.com/canada/julianna The banana awards are a couple entries back in the journal) She is part of our caringbridge family and one cute and very funny kid, and I love reading her journal entries! She is fighting this crappy leukemia for the second time and kicking it’s butt!
As you can see in the picture above, Brianna decided to start the school year off with a little excitement. She has already been sick once, and last Tuesday (4th day of school) she fell and broke her hand. Of course it had to be her right hand, the one she does absolutely everything with! So...6 weeks until freedom. Of course she is a bit upset because she wanted to tryout for soccer and volleyball. And since I am her scribe at home, I am learning how to do new ways off algebra (yuck). I reminded her though it could be worse, she could have broken both of them like her Uncle Kevin did this past winter. Her pediatrician recommended a dexascan (bone density test) because of all the steroids she had on treatment can contribute to bone loss, so we will be discussing that at her KNOT appointment in a few weeks. The neuropsyche dr. also recommended an MRI of her brain to check out her frontal lobes and see if one side was affected more than the other (which would be consistent with some of her testing) We are still working on getting things situated for school (organization etc...) but I think this year is going to be somewhat difficult.....
Hmmmmm what else??? I know there is more, but she is behind me telling me how late we are to go visit the cousin’s (Tammy and the boys) at the new house. So I will write more later. Hugs!!!
P.S. Please join us at the Light the Night Walk! So far, we have a very small team and minimal donations, which is a shame :*( Anything you can do to help is very much appreciated!!! Our website below provides all the info you need so please check it out!!!
Sunday, August 8, 2004 3:26 PM CDT
I can't believe it is August! You would never know it by the weather here. It has been such a disappointment so far, rainy and cool most of the summer. I think last night we set a record, upper 40's. It has really put a damper on things...
Happy Birthday to B! Happy Birthday to B! Happy Birthday my dear Brianna...Happy Birthday to B :-D
My sweet baby will be 12 on August 12th. She is becoming quite a challenge with the whole "its the age..." thing... (I am sure she would be thrilled to know that I am writing this- lol) Boy does she have an attitide. You would think she was 17 sometimes the way she acts. Our relationship has become very strained to say the least. Part of her nueropsyche testing revealed that it isn't all hormones and the age, but the chemo that was injected into her spine for over two years has effected her brain in such a way that at times she is overreactive and emotional...Interesting what chemo can effect...I think Junior High (OMG! She is going to be in Junior High!!!- I think I would rather call it Middle School!) is going to be and interesting challenge to say the least.
Tomorrow she is leaving for Camp Good Days for the week. The plan as of now (it keeps changing so who knows) is that on her birthday, I will pick her up and we will hang out with her Godmother and cousins for the day and then bring her back in time for dinner. But like I said, that has changed frequently so we will have to see. For a couple months, she wasn't even going to see me (which is a BIG deal cause we always celebrate her bday together...the past two years she was even refusing to go to camp if I didnt come get her for the day) Then, she decided that she would see me if I allowed her to dye her hair. Can you believe that????? I finally compromised and said she could get temporary dye if she paid for it and didn't do anything outragous (she originally wanted it black or purple! Now she just wants it a darker brown with some highlights) Well, when she saw how limited the selection was and how much she would have to spend for 3 weeks of color, she decided for the moment that she wanted to spend her money on other things...Thank God!!!
Well I have to run, I will do another update when she comes back from camp. I have some new pics to add as soon as Shawn downloads them from his camera (hint hint!)
Hugs,
Hand B
Sunday, June 27, 2004
Grades (3rd quarter grades): Reading 78 (100), Math 97 (94, Science 93 (97), Language Arts 81 (91) Gym 93, Soc Studies 97, (95) COmputer 92,(96) Band 100. As you can see she did very well. I will share her nueropsyche results once I get the final report and have the time to explain what they mean.
This Fourth of July holiday marks Brianna's 3 years off chemo :-)
Will always remember those fireworks from the 7h window...the night of diagnosis on New Years Eve 1998, and our last inpatient stay 3 years ago in 2001, our "Independence Day" :-)
Our soldiers wore many different types of uniforms...colorful nurse's coats - I.D. tags - kid friendly ties - smiling friendly faces who wiped the tears from our eyes - Buddy "the doll with a port like me and a velcro face for every emotion"- bubble soap, books and red hair doing the bunny hop from the treatment room to help work out the sting of that weekly leg shot - big, fuzzy slippers - finger painted hands, an Easter bonnet singing "I'm a little tea pot" - a smiley stamp on the end of her nose during an LP - Mr. Bundles laundry costume - The Tooth Fairy of 7H, pj's and sweats in front of a computer at 3 am - guardian angel wings - and the blue jeans and polyester pants of good friends and family. Plus so much more....You know who you are....and you will never be forgotten!!!
At B's ONC appointment last week, "Stretch" (B's most recent recent nickname) officially graduated to the KNOT clinic (Kids Now Off Therapy)Yeah!! Basically what this means is our appointments are now farther apart (we don't go now for another 4 months), all lab work is done at the end of the apointment instead of the beginning (my translation, they expect to find nothing wrong so you are sprung from 5c before they even know the results) and we see a new doc who specializes in late effects of cancer treatment vs immedidate effects. Realistically, switching the timing of bloodwork from before the appt to after is more common sense. Yes they don't expect any unwelcomed surprises (aka cancer cells) but also if any other lab testing is needed they can put the order in all at once (growth, hormone etc) Luckily Brianna is not anticipated to have any of those issues. She is growing like a weed (still!) and her teen-age mood swings prove that her hormones are working w/o any problems. As far as I am aware, her only big issue is repeat neuropysche testing and monitoring the results. I have an appointment coming up to discuss the results of those.
Still waiting on her report card grades. Apparently once your in middle school they decide to mail them home, so maybe tomorrow. I am sure she did well, but would like to see how she did on her finals.
That's all for now. (Sorry, still no luck on resizing this photo so the words aren't covered by the border. Taking any advice from all you caringbridge experts :o)
hugs,
H and B
_______________________________________
Wednesday, June 16, 2004 2:25 PM CDT
_______________________________________
A very overdue update I know. Not a whole lot to say. School is just about over for the year. Brianna has finals this week and part of next (which equates to 6 half days- what a pain!) Then it is finally summer time! I will post her grades when I have them. I am sure they will be good - her school doesn't challenge her at all and requires so little. I am trying to figure out what to do about that. I would like to send her somewhere else, but not sure where or how (obviously it would involve moving which I am not looking forward to at all)
She completed her neuropsyche testing. I have yet to view the report because we are still trying to schedule an appointment. But the dr who did it said she still displays the same strengths and weeknesses. Her ability to organize and plan ahead is minimal, and still has the same problems with visual/spatial issues. I honestly think that once she hits high school and starts attending regents classes, there will be a huge awakening and some tough times. I don't think the city schools prep them much, and funding continues to be a huge issue as there is never enough for what they need.
We are busy making lots of the usual plans of where to send her and what to do for fun. We will be going on our usual camping trips to various state parks of course, but we haven't scheduled any yet. So far Brianna will be doing a couple of day camps (soccer, softball, and computers), 1 week of girl scout day camp, 1 week of overnight Camp Good Days, swimming lessons and hanging out at her cousins for a few weeks while I am at work. We have already been to our family camp a couple of times, and plan on going there for 4th of July weekend. Not sure what else in on the agenda (of course, her bday in August which she is alread planning for lol) She is always working on perfecting the teenage attitude and I am very worried about what the years to come will bring. She is a great kid but VERY STUBBORN and mouthy. Definitly causing some difficulties with our relationship.
Well thats all for now. Please sign the guestbook!!! Hugs,
H and B
Sunday, April 11, 2004 6:25 PM CDT
Happy Easter!!! Figured I had to do an update today otherwise I wouldn't be able to say that cause it's be over -lol. Brianna has been doing well...just got her report card for this past marking period. Her grades were awesome, GPA was about 95! Although sometimes I really wonder if they are thinking of another child when they gave her those grades lol. She did alot of extra credit work which pulled things up a bit and made a good impression. She got a 100 in band, although she never practises' and often misses it because it is before school. Her social studies teacher said that she was well organized, which practically had me rolling on the floor. Organized is definitely not my child! Even she laughed at that and wondered what he was thinking. I often wonder how her grades would be if she were in a different school that had higher standards, because I don't think the city schools ask much of the kids. I am seriously considering checking into a private school for her for next year, although she would have to pass the test for the scholarship unless we win the lottery or something. I haven't had the chance to really checck into it cause I have had so much going on. My main concern would be whether there is enough diversity in this school. But its something to think about because I know she isn't reaching her full potential where she is.
We had her first ONC visit with Dr. C. which was pretty uneventful. Although she caught me off guard when she mentioned that she would only have one more visit with Brianna before she moved on to the KNOT clinic (Kids Now Off Therapy) I was shocked, but this July will be 2 years off treatment! Woo hoo!!!!! THe KNOT clinic focuses on off treatment issues and see only kids that have been in remission for 5 years, or in leukemia, 2 years OT. I am looking forward to this step, although the only main change will be another new doc. We still go to the same location for appointments (which, will only be 3 times a year!!!) That, is kinda scary but hey, we've got nothing to worry about, right???
My dad just finished a month of maintance chemo, with some reactions for the first few infusions but after that things were ok. Still no newson the donor aspect :-( ... although if he went now the stress would probably throw me over the edge. Not that any time is a "good time" emotionally, but right now I just feel like I have so much stuff going on that I can barely keep my head above water. I have absolutely had it with the crappy weather here and broke down and bought a month at a tanning salon. I need my sun!!!!
Well enough of all that. Please sign the guestbook so we know you stopped by! Hugs, Heather and Brianna
Thursday, February 19, 2004 8:52 PM CST
Yes, the happy little snowman has been removed from the page. I am so sick of winter and cold and snow! So now we have Brianna's most recent favorite color, purple. I am sure she will give her approval on this one :-)
***although she gave her approval, she picked a new background and pic on 3/7***
Last ONC appointment went well, although we got a little bit of a surprise. Dr D, who we love is leaving. He is so great with kids and will definitely be missed. I told him I wanted to pick the new one, which he said he wasn't surprised and figured I would- lol. I hate it when a doc you are comfortable w/ leaves the practise. I told him I wanted to pick our new onc, instead of just being reassigned and he wasn't surprised. I guess we are going w/ Dr C. She was great at dx as far as answering questions and not getting annoyed sitting with me for 1 1/2 hrs till I understood what was going on. Plus her "interest" is long term servivors issues, so I am hoping that will work to our benefit... I asked Dr D. if he thought personality wise if this was a good match for us, and he laughed and said that Brianna and I were both nuts and the best match for us would be a nut like him. lol Unfortunately I don't think any of the other docs there fit that category like we do. Hopefully my millions of questions won't annoy the heck out of her.
I did ask him if COG had been noticing any trend with POG 9605 late relapses, since I know more than a couple friends who have relapsed "late" (more than 1 yr OT) He said that it was just a coincidence that I knew these people, and that we are still in the less than 2ange of relapse. Oh, and we don't get to go to the KNOT clinic until 5 years off treatment, not 5 years remission. Not sure if that means we switch docs again or what, since I think the KNOT clinic is the same office. That might all change by then because we will finally have our childrens hospital in Syracuse (well, an addition that will be only for children)
Brianna did well on her report card, although she went down in everything she still made honor roll so I don't see how I can complain there. Her organization is a mess though and she still forgets everything. She will be having a repeat neuropsyche exam sometime in the near future. IT will be interesting to see if things have progressed on paper so to speak.
She is also practising for her upcoming middle school play that she is in. She is an orphan in the play Annie. Can't wait to see it :-)
Still no match for my Dad (awaiting transplant for CLL) He has now been in the national donor bank for over a year. Very scary!!!!
Well, enough for now. My brain shut off hours ago so I can't think of anything else.
Hugs,
H and B
Monday, January 19, 2004 1:09 PM CST
Five years ago on New Year's Eve, I sat in the ER with Brianna and my Mom as they told us she had leukemia and would need 2 1/2 - 3 years of chemo to live. Today marks the day of her two week bone marrow biopsy and 5 years in remission for her (the majority of children with ALL go into remission w/in the first 28 days of induction chemo)
No dr. in the oncology world will mention the word "CURE" because relapse can technically happen at any time. And there seems to be alot of controversy between doctors whether the 5 year mark starts at remission, or the end of treatment (B. has been OT for 2 1/2 years) B's onc says its 5 years in remission but I don't think we "qualify" to go to the long term survivors clinic until she's been 5 years OT.
Either way, its 5 years in remission and the reflection is incredible........I can't even describe it. Lots of mixed emotions, triumphs and tragedies. I think only those who have lived it really get the depth of what I am talking about.
Hugs,
H and B
___________________________________________________
January 12,
Christmas and our visit to Maine was very nice :-) Of course, we had over four feet of snow the month of December, and it all melted 2 days before xmas :-( Right now we are in the middle of a deep freeze, which has become very annoying! I am so sick of winter and we have months left of it- YUCK!!!! Would love to be planning a trip somewhere warm right about now. Oh well. Not a whole lot to say...
hugs and prayers,
H and B
Friday, December 12, 2003 7:39 AM CST
Brianna got her report card and did great this marking period, making honor roll! The 6th graders who made merit or honor roll were rewarded by a field trip to the mall for the day for shopping, lunch and a movie, which she loved. Her first time walking around w/o an adult. Lucky for her it was the same day as Shawn's surgery, so I wasn't able to be my usual paranoid mom self and hide behind the corners and follow her around to make sure she was safe- lol. They were actually only w/o an adult for about an hour and stayed with a group of kids so...
When we went back to the Onc's I had him draw an extra tube of blood to test the rest of her antibodies from previous vacinations. She has them all except measles, so she will need to have that one done again too. I haven't told her yet. She is still mad about having to get the Hep B series over. She got her second dose of that at our last visit, along with her flue shot. She tried to make an escape but it didn't work-lol.
We are very busy with the upcoming holidays. I probably won't be able to do another update until after we come back from Maine. We are leaving the 26th (YIKES, that means we have to be packed before Christmas!!!) Way to much stuff to do- I am not even half way thru my shopping.
Well, hope everyone has a happy, healthy and safe holiday!
PLEASE SIGN OUR GUESTBOOK!!!
Hugs,
Heather and Brianna
Tuesday, November 25, 2003 6:12 PM CST
Thanksgiving... This is a time to thank God and to acknowledge the many blessings that He has graciously bestowed upon us. A time to come together with family and friends and forget about life's daily chaos and just enjoy each others company. While it is easy to identify the hardships in our lives, we often forget to take the time out of our busy days to appreciate all of the wonders of nature. If we reflect on these things, we would realize how very blessed and fortunate we really are.
I am thankful for my family and friends, and for the many things we tend to take for granted as the days pass us by. We do not live in a country that is torn up by war, where the days and nights are filled with the sounds of battle. We are free to attend the church of our preference, to express our own opinions, and to make our own choices without the fear of arrest or torture. We have soldiers who dedicate themselves to our country and our beliefs, sacrificing their lives and the happiness of their families to ensure our safety and freedom. We have clothes on our backs, food on our table, and a roof over our heads. Our society is empowered with the knowledge of modern medicine, which have saved or improved the quality of life for so many of us and our loved ones. We have friends that are so dear to us that we are able to consider them family. Many of us are blessed with so many extended family members that we have to schedule our holidays carefully, so that we may enjoy time with all of those we love. While there will come occasions that a loved one is unable to join us, help us to realize they are here in our hearts.
Most difficult to bare are the feelings of grief when we remember those who are no longer with us. We have lost so many loved ones over time. Although we can not see them at our table, we hold them close to our hearts. Please help us to feel their spiritual presence and to remember them with joy instead of sadness. For there is no distance that our love cannot bridge, and no passage of time that could ever weaken the bonds of a family.
Heavenly Father, we thank You for watching over each one of us, for the new generation of children that you have brought into our family, and for those yet to come. We ask that You continue to guide us through our journey of life as we persevere through adversity. We ask that you watch over our soldiers and be with them and their families until they are all safetly returned to their homes. Wrap Your arms around our friends whose children and loved ones are no longer able to sit at their earthly table. Surround them with Your love so that they may find the strength to endure each day. We thank You for each blessing that You have bestowed upon us, and for the love that surrounds us each and every day. Amen
Happy Thanksgiving my friends! May you all be surrounded by family, friends and good health this holiday season. Love, H and B :-)
Friday, October 10, 2003 8:11 AM CDT
B is doing pretty well. Has adjusted to middle school and her grades are pretty good (has her first dance coming up! Yikes!) She is still very disorganized and forgetful. We are probably going to have to update her 504 plan for school to make it more workable for the middle school environment- but will be doing that after the Cancer in the Classroom conference in Nov. I am hoping at least one of her teachers will attend as well as someone from CSE (committe for special ed). You would think as many cancer survivors they have in the city district, they would mandate a couple board memeber to go-although that would require common sense...I am anticipating her long term effects to become evident now that school tasks are becoming more complex. She has a lot of strengths academically so that helps but we need to establish some good proceedures or they are going to snowball her later on.
At this months OT appointment we reviewed her blood test for Hep B antiboties. We knew that because of her age and changes in vaccine requirements that she need another shot before 7th grade (3 part series). Well apparently (even though when I asked about this when we first went OT and was told I had no reason to worry about it..) the chemo wiped out her antibodies to the first two shots. So she needs the Hep B series all over again. I am hoping those are the only ones- will have to make the doc check the other ones. He said he did, but as I said, when I asked him to when she went OT, he insisted it wasn't necessary. Anyway, Brianna was not happy about needing the additional shots at all and threw a nice fit. Just like old times. Next month we need to go back for her second shot, plus her flu vaccine shot (hmmm I am thinking that won't be a happy day) She is real upset too that she can't have the new mist flu vaccine because it is a live virus (shot is dead). Hard to explain all this to her why..she doesn't care about the rational she is just sick of shots. Don't blame her since she got hundreds of them over the course of a few years.
She also had an xray done on her foot because one of the bones was causing pain on and off. The onc still hasn't called back about it- which really irritates me. If there is nothing wrong that is great but why can't they take one minute and call to say so, so that I know someone reviewed it. That is the hard part of being in a clinic w/ children that are still on treatment. Their issues seem to take higher precedence (rightfully so in some sence- but still...) My concern here would be effects of the prednisone on her bone strength, cause I know some kids have problems with it.
Dad is still waiting for a good match. They have had a few that they thought might be close enough, but with further testing the ONC thought it was just to risky to use them. So he is beginning maintance chemo in early November to try to keep him in as close to remission as possible. With the holidays coming up, I almost hope a match doesnt happen until after Christmas. I would hate for him to be away from us during the holidays. And it is going to be so hard to visit. I am just trying not to even think of any of that now- the rest of the family seems to be the same way. It is just going to be such a difficult time, especially if he has a lot of complications :-(
I am soooooo sick of cancer. To many friends relapsing, passing on, or living thru hell in an attempt to survive this beast. Just makes me sick!!
Hugs and prayers to all. H & B
Sunday, August 31, 2003 8:59 AM CDT
Summer's over :-( We have been busy, busy and of course it went way to fast. Seems to go faster every year. Brianna is doing well and is now seen every 3 months by the ONC. Have had a few summer colds, one that even managed to postpone her bday party :-( She was not happy about that at all! But now she is ELEVEN! My baby is getting old! In a few days she will officially be a Middle schooler. Yikes!
B also managed to break her wrist at her drama camp in early July (one of the day camps she did this summer) She was in a cast for 3 weeks, and of course thought her summer was ruined since she couldnt swim, and had to switch weeks for camp good days. Luckily it was only on for 3 weeks! She did pass on to level 5 in swim lessons and enjoyed drama and softball camp that the city parks and rec put on. She went to the fair with her Auntie Eryn and won a rainbow dolphin at the water pistol game (must be the only game there that wasn't rigged, LOL!) We have had a great time camping w/ various friends on mini trips around NY- Watkins Glen is a new fav. Yesturday we just got back from probably our last trip of the summer (although if the weather holds out, we will try to go camping one more time!) First we went to Maine with Shawn and Amanda for a few days and got to meet the rest of his family. They are all very sweet and made us feel very comfortable. So glad we got to go. After that, Shawn dropped us off in Vermont where we stayed at the Trapp Inn with my friend Jenni and her family for a few days. Very beautiful scenerie! And Brianna finally got to go horseback riding! Jimmie (part of Jenni's family) found out that she had never been and that it was something she always wanted to do and treated us both to an hour of riding. At first it was very nerve wracking because we were the first ones on our horses and they were getting antsy while they were waiting for everyone else to be ready. B started to cry cause she was so nervous and I couldn't do anything to comfort her :*( But once we got moving we were fine and she loved it. And lucky for me I didn't fall off!
My Dad is getting closer and closer to transplant. They still do not have a perfect match :*( But his ONC here in Syracuse thinks that now is the best time for his body to withstand the proceedure. They did a bone marrow a few days ago and will have the results sent to Dana Farber (Boston) to see what the transplant doc has to say about proceeding. If they have a perfect match I am sure it will be a go, but as of now they have to weight the odds of proceeding with a not perfect match and hoping for the best, or waiting for a match that may never come while his body gets weeker and more prone to chemo resistance. Very scary! I hope and pray that things go well and the side effects are as minimal as possible!!! His bday is the same day as the Light the Night walk this Sept 18th, which we are doing of course. By then we should have some more news hopefully.
Well, I must go for now. Hopefully it won't be to long until next post.
Hugs,
H and B
Saturday, June 28, 2003 7:00 AM CDT
Summer is finally here!!!!! Brianna is out of school for the year. Of course, her report card was very good :-) Next year is on to Middle School. Thankfully, she will be in the same building, just upstairs. My parents got her the new Harry Potter book for a job well done. My little book worm read almost 100 pages in the first few hours of having it. She hasn't set it down yet and is up to about 600 pages in less than a week.
We are busy making summer plans now. Camping with family and friends of course, Camp Good Days for a week, swimming lessons, 2 different summer day camps that each run for a week and a trip to Maine w/ Shawn and Amanda. Our first camping trip for the year was our annual Memorial Day weekend trip with cousin Tammy and her 4 boys (3 of them 3 yrs old and under). We arrived Friday night, spent a few hours trying to get the new tents and stuff set up while the kids ran around us in circles-LOL. Then come about 11 pm it started pouring. It poured all weekend. Everything got soaked- we even packed up Monday in a downpour. Tammy actually left Saturday afternoon with her three little ones and came back on Sunday during a momental break in the rain. We had fun, but it was definately the worst mother nature had ever given us.
Brianna has been doing well physically. Typical allergy problems and had a sinus/ear infection a few weeks ago but it healed up ok. She goes for her next ONC appointment this week. My Dad is still on chemo and awaiting a match for a mone marrow/stem cell transplant. Hopefully they will find one soon- althought as soon as they do he will be heading to Boston to stay- maybe for months. It is a very scary concept since I know so many people who have had transplants and have an idea of what to expect. IF he receives a "mini" transplant his complications might not be as bad, but may not kill off all the leukemia cells either. It is all a wait and see game at this point.
Well I must be going- my "baby" brother graduates from High School today :-)
Hugs,
H and B
****************************************
July 2,
Would you believe I actually almost forgot...It will be TWO YEARS OFF CHEMO this Saturday, July 5th!!! I think that may mean we move to appointments every 3 months. Our 5 year mark is almost around the corner!!!
Sunday, April 13, 2003 11:29 PM CDT
Sorry its been so long since I updated. Just been to down to write anything lately, and so much has been going on- that I didnt know what to say I guess. Since this page was originally created to keep people updated on Brianna's health, I have mainly kept it as just that- things pertaining to her or cancer related stuff, sometimes major events going on in our lives.
Well, Brianna has been doing great- growing like a weed of course and all her pants are too short. I know as soon as I go out and buy more summer will hit (cause who the hell knows what happened to spring) and she won't need them. And by fall they will be too short again. Plus the little pain in the butt has developed her own taste so I need her with me when I shop to avoid returns. She got her report card and did very well of course- seems to be the little tutor of the class :-) Apparently, they had some state testing though recently and even with the extra time her 504 accomadation plan allows her, she didnt finish. She said she was officially the last 5th grader taking the test. So I need to find out exactly what her problem was on that- she told me a few things that gave her a tough time but I'm not really sure what the full picture is.
Her next ONC appointment is next Monday- which I am assuming will be uneventful (better be or I am going to have myself committed!) I will stick a note in here next week about it.
My Dad has completed 2 rounds of his chemo (CHOP and Rutuxin)with the expected side effects but doing ok. He is responding to it, so they will do a bone marrow after his 3rd round and see where to go from there- whether it is just more chemo or to head towards transplant. No news of a match yet on us or from the marrow bank :*(
Sadly, our little friend Erin (her mom Anne makes those wonderful candles named after children fighting cancer while donating % of her profits) has relapsed 10 months OT. Anne and I met on All-Kids while both our girls were on chemo- they were on the same protocol as B was- a little less than a year behind us. SO please think of them as they must go thru this all over-not sure yet if she will need a transplant or "just" chemo and radiation. www.caringbridge.com/nh/erinsstory
And oh the war...the whole situation just really sucks. I am not going to go into anything here cause so many people have mixed feelings about it and I don't want to deal with any online attitudes. But regardless of your opinion about it, our troops are there and need our support- their families too. I can only imagine how horrible it must be to have a loved one over there fighting- not knowing if they are ok or when they will be back. My honey is in NYC cause he is the National Guards and that is hard enough. But anyway, my cousins friend lives on base in Germany and all the men are in Iraq. Well the damn jerks over there are harrassing the families of the soldiers because they don't agree with the US being there. Like these families don't already have enough to deal with??? They have no control over this situation and I am sure would love to have their families back together and their loved ones out of harms way. I dont know why people have to be so stupid and mean.
Well I will try not to go so long without updating. Thanks so much for all of you who are checking in on us and signign the guestbook.
Hugs,
H and B
Sunday, February 16, 2003 7:13 PM CST
Hi All,
Been meaning to update for awhile now, but didn't have the time or energy, plus I was waiting for B's appointment, which was postponed for a week. Good new first:
Brianna is doing "great" according to her ONC. We talked in length about the protocol she was on and what they have learned from it as well as the toxicities and late effects. He doesn't think that B's "late effects" will get worse, but that she will have more difficulty as tasks, school work etc get harder as she gets older. But her verbal abilities are so advanced that her strengths will help her out alot in life. He also said that all of the 4 arms had pretty close remission rates, and it was hard to say that any of them were more toxic than others, esp since the data isn't totally collected yet. He said one thing that will be interesting to see is if any of the arms produce late relapses (scary thought!!!) She is uneligable for the followup protocol for the neurotoxicities (which I knew) because that is for the kids who finished the whole protocol before it was changed because it was to toxic for the kids. That would be comparing apples to oranges. But he also said that at this point, Brianna has a less than 5% chance of relapsing!! Whoopee!!!! And her 5 year time, starts from when she began her remission (jan 99) not when she completed treatment. So she only has 1 more year to go until we can say she is cured!!!!!
Bad news- The last month has been tough to say the least. Several close friends have recently relapsed, some of them with very a poor prognosis. My TNT coach(Leukemia & Lymphoma Society) Luanne passed away, as well as an uncle who committed suicide (wasn't close to him, but very close to my cousins who also lost their mom only a few years ago) Also found out last week that my Dad, who has CLL (leukemia), is going to need a stem cell transplant. It is not considered a cure, but will buy him time if it works and may give him a long term remission (how ever long that may mean). Without it, his ONC said he will only live a few years tops and his quality of life will be very poor. So they are setting him up with a specialist in Boston where he would have to go for this (Dana Farber) to find out some specifics. His siblings have already been tested. His brother is not a match, and not sure about my aunt yet. My mom and I drove to Rochester on sat for a local bone marrow drive to be tested cause we missed the one that was in Syracuse. So we are both in the donor bank now, but they said we won't know results for 4-6 weeks. It was very simple, just a finger stick- a shame so many people have to die because others are to afraid or whatever to go do this. It is unlikely we will match, but possible. I have a slightly greater chance since I am his daughter, but my mom and any other non relative are a 1/20,000 according to what I have read. Very discouraging, although they can transplant w/o a perfect match- it's just the closer the match the better chance of it working and him having less complications. My friend is also going for transplant for ALL relapse and BOTH of her brothers match her- which is almost unheard of! So pray for a match for my Dad, as well as the other going thru this hell.
Well, I need to go for now. Thank you to all the people who have been stopping by and signing the guestbook, and to those who have "adopted" Brianna!
And AOL users BEWARE! I lost all of my favorites-one day they just disappeared- so I don't have any of my websites anymore- not to P.O'd.!!!
So if I haven't been stopping by your website, that is why. And if you have any website that are great (cancer ones especially!) please email them to me cause I can't remember what half of them were.
hugs,
Heather and Brianna
Saturday, January 11, 2003 at 09:23 AM (CST)
Sorry I haven't updated in quite a while. Things have been going fairly well here, I have just been down a bit. Survived another anniversary (dx was New Years Eve) I keep waiting for that awful feeling of dread to pass. So many children we know have recently died or taken a turn for the worse and so many others are spending there 1st holiday season apart from their babies. I can only imagine how horrible that is. It just breaks my heart :*(
Brianna has been doing well and had a great Christmas. We have been buried in snow and it is freezing here. So much for a mild winter. I have been put in a volunteer position for LLS to recruit honored teammates for upcoming marathons and was considering doing Vermount this Memorial Day, but in this weather I don't know. I don't know if I have the energy even if the weather was decent.
Well, hope everyone has a better/happier/healthier New Year.
hugs,
H & B
Wednesday, November 27, 2002 at 07:29 AM (CST)
Hi Everyone!!! Well Brianna is better and has been back to school (after missing 1 1/2 weeks!). She is doing great this year. Her grades aren't as high as they usually are so she was a little bummed when she got her report card but her teachers say she is doing great. She was picked as student of the month for December (Yippee) and her teacher recommended her to be a "peer tutor" which means that she will be trained to help tutor younger children who are having difficulties in certain areas. Hopefully this will not prove to be to disrupting for her since she is pulled out of class for it (although they said they don't do it at important times) Her teacher said she will make sure to keep me updated on how things are going and if it proves to be to much we can always stop it. She already leaves class a little early on certain days for band- which she is doing well in too!
She has been debating on quitting her after school karate class (45 mins) because she says it is just to much and she gets to tired. I am not to concerned here cause it is right after school so I can definately see why she is beat, but she loved it last year so it makes me a little sad when she says she just doesnt have the energy to do it anymore. Overall her activity level seems to be pretty good (sometimes too good- why can't I have that kind of energy!)
Hmmmm- what else? Her next ONC appointment is the first week in December when I will finally get the answers to my questions regarding the protocol results from COG. We are also looking forward to (and have been having a great time at) the hospital and Camp Good Day holiday parties and activities.
LLS asked me to be their honored teammate coordinator for Team in Training. So if there is anyone in the Syracuse/Ithaca area that would like to find out more about the program please let me know! (If you are in another area you can still call your local chapter to participate) It is such a great experience from both sides of the program- Brianna has been an honored teammate and I have done 3 marathons for the Society. Considering doing another in the spring and/or fall. As crazy as it may sound coming from someone who does not really like running, it is alot of fun! Although the thought of training in snowbanks does not thrill me. I really need a treadmill! I would like to train the right way (me- not skip out on training miles? Imagine that!) and see what I am really capable of. I would love to keep improving :-)
I can't believe it is less than a month til Christmas! I have yet to start shopping- can anyone please tell me where the heck November went??? It is going to be one busy month!
Well I hope everyone has a Happy Thanksgiving! I probably wont post again until after her onc appointment. And those damn anniversaries are already looming in the back of my mind :*( As much as I love this time of year, I hate this time of year!
PLEASE SIGN THE GUESTBOOK SO WE KNOW WHO IS STOPPING BY!
lots of love,
Heather and Brianna
Monday, November 04, 2002 at 06:56 PM (CST)
Hi! If you are looking for the marathon update, it has been moved into the history (past journal entries) I didn't want to add this one to the same page as that one is already very long.
Brianna is still running fevers after a week. They are not as high as last weeks thank GOD, (she hit 105.3 one night!) and can now be controlled with tylenol. After 3 visits to the peds, xrays, blood work 2x's for counts and cultures etc, and a urinalysis the decided she had a bad case of the flu and a UTI from the bubble baths she was taking to get her fever down. She was put on amoxicillan friday and today they decided to change it to something stronger since she is feeling better but still running a fever on and off. So hopefully, tomorrow will be her last day out of school and this will be the end of this! I hope this isn't a hint to what this winter is going to be like! Maybe since she already had the flu, she won't get sick again. That's wishful thinking!
She was able to do about 1 1/2 blocks trick or treating and then she asked to go home cause she was cold and didnt feel well :-( I am glad she was able to get out a bit, but you could definately tell she wasn't up to her usual self. Her buddy Allie came over the next day with candy that her and her sibs wanted to share cause Brianna didnt get to go out for to long. To sweet!
Well that's about it for now. Marathon pics are in and the link is below. Oh, and orders for the holiday cards that the kids from our hospital made are being taken now- all profits go to the Center for Children's Cancer and Blood Disorders to help buy things for the children. If you send out holiday cards, please check these out- Brianna made one of them and it is featured on the cover of the pamplet. They have a good selection. Let me know if you are interested and I will get you a flyer or call Mandy at 464-6133. Hugs to all and please sign the guest book!
H and B
Tuesday, October 29, 2002 at 07:22 AM (CST)
HI! I did it!!! I completed 2 marathons in 1 month and completed the Marine Corps in less then 6 hours! And according to my coach, I ran more than 80% of it!!!! My official chip time was 5:48:11 so I surpassed my Disney time by over an hour, and Wineglass time by almost a half hour. This is an incredible accomplishment for me! I never would have thought I was capable of this- just looking back in the histrory of this web page and reading about Disney Marathon in January, The Rock n Roll Half Marathon in September, the Wineglass Marathon and Marine Corps in October- I can't even begin to imagine how many miles have been put on my feet in the last year! TNT is such and incredible experience! Yesturday, the team - the majority of whom could not walk right - was all talking about which one we would like to do next. Crazy I know! but if you haven't done this you can not imagine how incredible the journey is!
We rode down to DC leaving Syracuse at 4:30 am Sat morning, arriving in DC about noon. After a quick stop at the hotel, we went to our pasta party to carb load and get siked up for the next day. There I was greeted by Beth McQuin (www.onevoiceusa) who gave me the biggest hug and 1/2 dozen beautiful roses :-) My house smells so good thanks to her and Shawn! Beth and I were able to spend the day together which was so nice!!!! (Thank you Beth!!) From the pasta party, we hit the expo to pick up our race stuff and use my plastic to buy some marathon earings, then went back to the hotel for some chat time and a foot rub, then out to dinner, a quick swim, hit the hot tub and then our team meeting and lights out! The next day the marathon started out great- our team was able to all start together for the first mile or two, then Julie and I held back a bit cause we knew we were going out to fast for our pace. Oh, and what did I forget to bring? My watch that clicks off my intervals of when to run and when to walk. So I ended up running with Harland (coach) and Julie until mile 23 and just taking walk breaks as I felt I needed them. Harland said that he thought I ran about 80% of the time I was with them- which was much more then I had trained to do so at the end my knee was pretty sore! I felt all right most of the way- soreness of course and my stomach bothered me alot in the middle. Somewhere around mile 17 when we were on Continental Blvd I think, Julie and I were both pretty drained and my stomache was turning so Harland got us a big hot pretzel loaded with salt from a street vender that helped alot. The weather was great, except when the sun came out it was soooooooo hot! I think I looked like a drowned rat by the time I got to the finish line cause I remember going through water lines dumping 1 cup on my head, then one cup down each side of my body so I wouldn't pass out. Throughout the day, I think we saw the Washington monument from every angle at least twice! The race course was absolutely beautiful and the spectators were great of course!!! Best of all- we made that 14th Street Bridge at 22.5 miles in plenty of time! That bridge itself seemed like it went on for miles once you were on it! And all of it in the hot sun (and of course the mist tents that were supposed to be there weren't) At mile 23, I got the official clock time from the Marines (5:23) and realized that it was possible to not only break a 6 hr run, but maybe do it in under the clock time too. (It took us over 15 minutes after the start of the race to reach the start line cause there were so many people ahead of us. Clock time includes that 15 plus minutes while our chip time is the real time it took us to go from the start line to the finish line) So I was revived with energy and left Julie and Harland to see if I had it in me. Amazingly- I ran the whole rest of the 3.2 miles, except I walked the water lines (at this point, if I wasn't walking when I tried to drink, the water went right down the front of me- lol) and the hill at the end of mile 25) Yes- can you believe there was a hill at the end of a marathon!!! That is just wrong! It must have been a heck of a site to watch people going up that hill. It was so strange to be running at the end because very few people were- and for me to actually be passing people- many people at that- was something that so rarely happens. But I did it with the help of some very very special kids and my Dad- there is no way I was out there alone at that point! I could really feel them and all the prayers of the people who said they would be thinking of me toward the end when I would need it most. It was just so incredible cause anyone that has trained with me or who knows me well knows that running is just not my thing (I do realize how crazy this sounds seeing what I have accomplished in the past year, but it is the honest truth!) Well, I almost made the 6hr clock time. As I was approaching the 26 mile marker, I could hear the announcer counting down the seconds. I raced to that marker and made it to 26 miles, but that .2 after was the absolute longest part of the way. It took me almost 4 minutes to get from there to the finish line, where I crossed with a big smile and some very special children in my heart :-) Susan from TNT and Beth were there to watch me and it was awesome to see them at that point! After I got my chip off, I looped around til I found Julie and Harland so I could see them cross and then we met the rest of our team and limped our way back to our hotel (yes we had to walk more! Not sure how far it was- maybe 1/2-3/4 mile) It was definately a great time and the Marines put on a great marathon! I would definately consider doing this one again some day (yes...I'm probably going to do another one) The pics aren't up on the web site yet, but you can view them in a few days on the same web site as the Rock N Roll 1/2. Just go under Marine marathon 2002 and punch in my name. I feel so bad for the people who didn't get to finish- I think several thousand may not have made the bridge in time :-( I know when we left the finish line area, the announcer was saying 16,000 had crossed and I know about 25,000 had entered the marathon :-(
Team in Training raised over 2 million dollars at this marathon for The Leukemia & Lymphoma Society! That is so great!!! I still have some fundraising to do to meet my minimum required so if anyone who said they wanted to make a donation didn't and thought it was to late, its not! You still have time- just let me know. There are way to many people out there who still need a cure (my Dad included) so anything you can give to help is so very appreciated!
Well I have to get moving, we have lots of unpacking to do still and Brianna is home sick from school with a temp of 102 last night. Hopefully just a bug the will be gone by Halloween and her field trip Friday or we will be in big trouble! She is going to be a cheerleader this year and has a red, white and blue uniform with USA on the front of it- SOOOO cute!
Thanks guys for helping me do all this!!!! I couldnt do it alone :-)
Many hugs,
Heather and Brianna
October 31st -
Well Brianna is still sick- fevers hitting 104 plus. Been to the docs 2x's and they did some blood work "just in case". I hate that! Of course its better to be sure, but when relapse crosses their mind it scares me and gets me flipping out! Blood work came back ok (thank GOD!) and a sinus xray showed no infection there so doc said it must be the virus (aka, anything the docs don't know what it is seems to be considered viral) and it is just hitting her very hard. She can make it barely 4 hrs on tylenol and if I dont redose her right away, she is up over 104- hit 104.8 last night and that was after a drink of ice water! She is bummed about missing school parade, party and field trip tomorrow but the doc said if her fever is down and she feels up to it to let he go aroudn a few blocks trick or treating. So I will wake her up in a bit and get my little USA cheerleader ready. Hopefully she will feel well enough to enjoy it and be better in a few more days.
Please sign the guestbook so we know who stopped by. B looks at the number on the web page, then looks at the guestbook and says "hmmm...I think ____ would have read it, but they didnt stop to say hi- wonder why?" Just a quick hello makes her happy :-)
Happy Halloween (lake effect snow this weekend- yuck!!!)
hugs,
H and B
Monday, October 07, 2002 at 09:38 AM (CDT)
HI ya everyone!
Surprise surprise- I updated 2x's in a month!
B's ONC appointment went well last week- took forever to get in and out though. Someone at the hospital said they have had alot of new patients in the last 6 months- surpassing what they usually have in a year :*( I also received the sumary of the last COG meeting on her protocol. I haven't had a chance to chat with the onc about it yet to fully understand it, but the side effects that some of the kids had/have are so scary. I am kinda glad I didn't have this info while she was on treatment- I knew of the side effects and that there where alot because they had to change the protocol 2x's. But seeing it on paper is a bit different and gave me chills. And to see B's number listed under toxcicities (they dont use names for confedentiality reasons)was a little spooky. Her effects are very minor compared to others and I honestly think that they might never have been documented if it wasn't for good friends that gave me the info and validation I needed (thanks ALL-KIDS) to push them for the neuropsyche testing. I am sure as time goes on and kids on this protocol are followed by late effects clinics, they will find others like B who had "subtal" effects.
From what I understand (if I am interpreting it correctly) is the 4 year event free survival rate is 80 % pretty much what they told me when she was diagnosed. I am not sure how that number will change as the rest of the stats come in. There are still kids on treatment from this protocol- most will be off this spring so they will have more info then. I am really curious what they will have learned (other than the toxicity levels were too high) when they have all the info. They can not determine anything definately from the protocol until all the kids are off treatment and their info is in. I have heard from others that the newer trials are a bit different from this one though.
TNT went to the Wineglass Marathon yesturday in Corning NY. The weather was perfect- nice and cool- very foggy at the beginning though. Originally, I was supposed to get dropped off at the 6 mile mark of the marathon and continue with my group that I trained with (while we trained together all season, they were doing the Wineglass, and I was training for Marine Corps in a few weeks- yesturday I was scheduled to do 20 miles) I was never supposed to do the whole thing cause it would be to much for my body to do two marathons in less than a month. But....
Against the advice of my coach and the TNT staff- I did it anyway. It was always in the back of my mind that I wanted to and I had talked myself out of it cause I knew it was a bad idea. But when I got up that morning I just felt so great I had to go for it. We did our walk/run thing for alittle more than half I believe, then just walked at a good pace for the rest of it cause Mary was having foot problems. Evening walking, we still finished in around 6:18 and best of all- had this been Marine Corps, I would have made the bridge in the time limit!!!! Now hopefully I didn't screw things up for my body and I will still be able to do it in 3 weeks in DC.
I feel ok- just achey legs and going up and down the stairs isn't pleasant. A million times better than I felt at Disney. IT's amazing what a bit of regular training will do LOL. I wonder how I would feel if I did things right instead of skipping miles every week. I had a great time and don't regret doing it at all. TNT is so awsome- so many people on the course recognise what we were doing because they were either familiar with "The Purple People" or from reading our honored patients names on our shirts. Since we got an approved early start (didn't effect our time any, we just went out earlier than everyone else) we we ahead of the elite/fast runners for a bit. While the elites were to focused to pause and say anything, so many others that passed us gave us awsome compliments on training for TNT. It is such an incredible feeling :-) And the spectators were great of course too. The race was very small compared to Disney and the RNR 1/2 but very nice. My Dad, sis and Brianna came out to see me and Brianna crossed the finish line with me again. I think we may have a future marathoner here LOL. I am not sure how the pics will come out for this, but I will post my bib number below when the come in. (same web site for all marathons, just different bib numbers).
Well I have lots of stuff to get done so I must be off. Hopefully my next update will say I completed MC!
Hugs,
Heather and Brianna
Monday, September 23, 2002 at 09:48 AM (CDT)
Ok- so I'm a little slow in updates-those who know me well are not surprised by this :-)
The Rock N Roll 1/2 marathon in Virginia Beach was great (except the weather of course ;-) I walked the marathon with my Mom as a TNT mentor (for the Leukemia & Lymphoma Society) and in honor of children who have fought or are fighting cancer. Spectators and participants were in awe as they read all the childrens names on my shirt - many of them angels. It was such a priveledge to walk in honor of their fight for survival from this monsterous beast.
Brianna, my parents, my sis Eryn and I drove down to Frederick, Maryland where we spent our first night and were greeted and treated to a delicious dinner by our good friends Beth McQuin and family (the McQuin family rode their bikes across the US TWICE to raise $ for childhood cancer and to honor the fight of children across the world) It was so great to see them again ~ definately one fo the highlights of the trip!! We had a fabulous time that night and again the next day when they accompanied us to DC and gave us a tour. I wish I could visit them more often, they are such a wonderful family. I also got to see many of their pictures and hear more of the stories of their bike trip across the US last summer. A journey that words can only begin to describe.
As the day came to a close, we bid our goodbyes :*( and headed to Virginia Beach. We were able to stay right on the ocean for the week as a result of good planning and early reservations- I love hearing that ocean 24/7! Unfortunately it rained there every day and the weather was better in NY (just like our last family vacation) but we still had a good time. We missed out on Busch Gardens but had fun swimming in the ocean (or should I saw being knocked down and dragged up the beach-LOL) watching the schools of dolphins, and walking/biking the boardwalk etc.
Half marathon day started out on the essential search for someplace open at 6 am that served decent coffee. Then we met up with the rest of the TNT team (Leukemia & Lymphoma Society) at their hotel and walked to the start line. About a half hour before the start (while we were waiting in the endless lines for the "bathrooms") the skies opened up and SOAKED everyone. A Scotish group of runners made the best of it by entertaining us with singing and dancing in the rain :-) After that, the drizzle didn't bother many people since we were already soaked to the bone. Luckily, it wasn't to windy so we didn't get very cold and on the positive note, we didn't have the 100+ degree heat from the previous week.
The walk was a lot of fun with bands and cheerleaders every mile. My Dad, Eryn and Brianna were able to find us on Atlantic Ave and again right before the finish line. The best part was grabbing Brianna and crossing the finishline with her and my Mom!(see link for pics below) The announcers called my name as I crossed - so cool! (they pick a person's bib number and look up their name and home state) It was an incredible day.
I am still training with TNT for the Marine Corps Marathon the last week in October. I pray that I will make the time limit and the fundraising minimum required! My 18 mile run went well (but not quick enough yet) and I will be doing my 20 mile run in less than 2 weeks with my teammates at the Wineglass Marathon in Corning, NY (if you would like to make the 2 hour drive from Syracuse to cheer us on please let me know- it will be alot of fun) Since I am required to purchase a bib so I won't be pulled from the course, I am so tempted to just go for it and do the whole marathon with my teammates. My coach insists this is NOT a good idea for anyone to attempt two marathons in such a short time period, especially someone who skimps out on training miles etc.I know she is right but I will never have this opportunity again (attempt 2 marathons while only training for one) I would be very sore if I do the Wineglass Marathon (since I would not be going into it with the proper rest break needed before such an event) and it would seriously effect my performance in the Marine Corps- which I may not be able to complete anyway if I don't get my body moving faster. She thinks by sticking to my training schedule, I will do fine at MC as long as I pace myself better but I am still a bit worried. I will post again after Wineglass to let you all know how things go. And BTW, thanks so much for the support you have all given me in my crazy endevors.
Brianna has started school and is in Safety patrol (crossing guard) So far things are going well for her in 5th grade. I can't believe she is getting so old! Her allergies have started kicking up pretty bad with the weather changes but that is nothing new. If that is all we have to deal with this year, then I am truely greatful. We also participated in the annual Light The Night walk for the Leukemia & Lymphoma Society. The Syracuse, Watertown, Ithaca and Cortland areas have raised over $110,000 and they are still counting money! Yay team!
Well I must be going- lots to do and running out of time as usual :-) Please sign the guest book so we know you stopped by! Lots of hugs,
Heather and Brianna
Monday, August 19, 2002 at 10:00 PM (CDT)
Well another anniversary has come and gone. Brianna has been off chemo for exactly 1 year on July 5, 2002! She is doing very well and has graduated to going to the hospital once every 2 months now (which seems like forever!) Amazingly, I still go in with a list of questions or requests for info from the Onc. I bet there are days when he is sorry that he offered to take "us" on as patients when our old onc had to retire after her stroke. Oh well.........
One year OT should be nothing but happiness but it's not. Of course I am elated that Brianna is happy and healthy. But it saddens me so when I know so many other children (an adults) who are unable to celebrate with us. Each new milestone makes me think of and remember those friends who we have left behind and how they will never reach these milestones. Every relapse I hear of makes me wonder if it is around the corner for us. I know these emotions are all so normal and life will never be the same but..........ok no words to fill in here. So those of you who haven't lived this are thinking that I'm totally loosing it-and others know exactly what I mean without me even having to write the words.
OK, Onward. Summer is almost over and of course went by way to fast. My fundraiser for the Marine Corps Marathon raised just over $800 for the Leukemia & Lymphoma Society. Still got a ways to go. I am really bummed because I can not keep up with the rest of the runners, so I will likely be the absolute last person in line at this marathon. Takes a bit of the fun out of it when you don't have a friend next to you to listen to you whine about how bad your legs and feet hurt. I am really worried about not making it to that bridge at 22 1/2 miles in 5 hours. If I'm not there in time they won't let me finish and that would really URK me (even though I will probably be almost collapsed by then LOL).
The Rock N Roll 1/2 Marathon in Virginia Beach is coming up quick! It is the first day of Childhood Cancer Awareness month (9/1) and I will be doing it in honor of all children fighting cancer. I will wear their names on my shirt with a gold ribbon and hopefully it will bring some awareness about this monsterous beast that has entered our lives and taken so many away prematurely. Anyone may send me a name and age to add to my shirt if they wish. It will truely be an honor to do this.
Brianna just turned 10 this past week (a teen in training she calls herself!) Well, she is still as sweet as ever, but has perfected the mood swings and attitude of a teen (thinks she knows everything and has the same rights as an adult) Boy am I in trouble! She went away to Camp Good Days (cancer camp) and had fun (but still missed me enough to write home and tell me to come and get her-she called home the morning after I dropped her off!) I was lost without her here- I can't imagine not having her in my life. Actually I can imagine it, but can't imagine how I would survive. I don't know how other parents who have lost their babies go on each day. It breaks my heart :*(
Well I suppose I must go and get some zzzzzzz's. Didn't mean to write so long and depressing (but its reality). I will try to post more frequently and be a little more upbeat next time.
Hugs,
Heather and Brianna
Monday, June 24, 2002 at 12:38 PM (CDT)
Yeay!Summer is here! Brianna just finished school for the year- she did great on her report card. The only thing that was below were it should be was that darn penmanship and her flute lessons (although she did improve some on the lessons) She also had her hair cut! This is a big deal because since diagnosis, it has been a fight to just get it trimmed a coupld times a year. But the other day she got about 4-5 inches cut off-now it just touches her shoulders. It looks so cute- but I will kinda miss it. I loved watching her run up the sidewalk to school with it long and bouncing :-)
We have lots of summer plans~ B will be spending the summer with her cousin Rissa and they are both in swimming lessons this year. We have some camping planned, a week at Camp Good Days (cancer camp) and lots of preparation for my upcoming marathons.
The Rock N Roll 1/2 marathon is on labor day weekend. We are traveling down for a week w/ the family and it should be a great time. Since September is Childhood Cancer Awarness month, it seemed very appropriate to do this one in honor of the kids. So I will being wearing a large gold ribbon on my singlet with the names and ages of children who have fought cancer. Please share this w/ others and contact me to place a child's name on my singlet.
I am also all signed up for the Marine Corps Marathon in October. This one I am doing for The Leukemia & Lymphoma Society. I must fundraise for it, so one of my main fundraising ideas is for a Happy Hour type function. Please join us and
Party for a Cure!
July 21, 2002 1:00-4:00
at The Dry Dock Grill
306 W Division St- Syracuse NY
We have numerous raffles including fair and concert tickets, Enchanted Forest tickets, etc (to many to name) plus a large 50/50 raffle that we are selling presale tickets for. $6 includes admission, food and entertainment by
The Critics
We are going to have a great time. Email me for 50/50 tickets or for any questions.
Training is tough. I have to make 22.5 miles in 5 hours or I won't be able to finish it (they reopen the road) My body is hating running- especially in the heat! So if anyone would like to donate their legs for a few months, I would greatly appreciate it :-)
Well I gotta run, Sign our guest book so we know you've been here.
Hugs,
Heather and Brianna
Monday, May 20, 2002 at 09:14 AM (CDT)
Brianna is doing well and had her 10 month OT appointment 2 weeks ago. Her counts are doing good and up a bit from last month. There is still fluid hanging out in her ear-hopefully that will go away on its own. The pediatrician wants to keep an eye on it. Last week I picked up Brianna from the sitter's after work to find out she had been bitten by the neighbor's dog. First she slipped & fell (they had to wash their chalk artwork off the neighbors side walk) then the dog ran up and bit her calf, then her friend dropped her bucket of water right behind Brianna before she ran from the dog. So I arrived to a wet, bruised, and upset child with a bite on the leg. :-( Fortunatly, the dog was UTD on its shots and B had a tetnus in 1997 so she was still protected and didn't need another shot. She fought me hard though when I told her the doc wanted to bring her in to see it. My very strongwilled child! :-) She had one puncture wound and bruising all around her calf from where he bit down on her but she is doing fine now. They put her on her favorite (NOT) augmentin for 10 days which she is not wanting to take either. My child has become a very anti medicine person, unless it is tylenol. I think she blows some of these doctors minds when she speaks up and says "I'm not taking that nasty stuff. I am in charge of my body and I am not taking it." She knows their terminology and everything. Was trying to get the pediatricin to give her amox instead because it tasted better. How often do these docs get challenged by a 9 year old regarding what med to prescribe? It was a little ammusing and I think the doc got a kick out of it. Her onc loves her strong will and said he would rather see that then a quiet, passive child who lets someone walk all over them.
Softball finally started and B is improving a bit. We are exciting about our first camping trip of the year this weekend. Hopefully it will warm up! Apparently mother nature doesnt know it is supposed to be almost summer!
AND Team N Training started its fall season for the marathons. I am a mentor this season, being support for those participating. I am also signed up to do the Viginia Beach Rock and Roll Half marathon on September 1st, and fundraising (for the Leukemia & Lymphoma Society) for the Marine Corps marathon in October! I can not wait! RNR will be alot of fun- the family is going down w/ me. I will be walking w/ my mom and TNT members and I am going to make a singlet with a large gold ribbon and children's names on it who are fighting childhood cancer. I figure it is very appropriate to do it in their honor since they go through so much fighting this and it is the first day of Childhood Cancer awareness month.
Marine corp is going to be tough. The time limit is 6 1/2 hours, and they don't adjust the time like Disney did (meaning if it takes you 30 minutes just to reach the start line because there are 10,000 people ahead of you, they don't care- that time counts against you and you now have 6 hours to do 26.2 miles.) So I am training to run/walk this one which is going to be real tough because I need to do alot more running then walking. Running has never been my thing and it is amazing how different it is than walking. Even the runners say so! They actually think walking is harder. The plus is that the more I run, the less time I have to put in training- it is definately quicker than walking!
I am working on some new fundraising ideas to raise the money. In the works are a happy hour type event w/ raffles etc, garage sale, jars at business counters and hopefully some type of event at a school. The response I have gotten so far is that I am crazy. That may be- but if it wasn't for the crazy people like me willing to "torture" their bodies this way, LLS wouldn't have all this money to support research and help the patients and families through this horrible journey. I want to see cures that work for everyone! And long term side effects minimized so people can enjoy their lives once they are cured. There is nothing crazy about that!
So hopefully, people will not avoid me when they hear I am fundraising again and will support my efforts to find a cure.
As always, prayers and hugs to our buddies going through hell write now trying to beat this beast. It seems as if cancer is an epidemic that so many people I know are fighting some type of it. It breaks my heart to know so many people who are not expected to make it through this. And dying of cancer is not an easy way to go- thats for sure :*( Ignorance to this might be an easy way to deal w/ it (close my eyes and the horror of cancer doesn't exsist) but it doesn't cure it, only helps it spread.
Hugs,
Heather and Brianna
Sunday, April 14, 2002 at 08:46 PM (CDT)
Hello All! Last week Brianna had her 9 month OT (off treatment) visit. She has been doing very well. Her counts were a bit low for being off treatment(would have been good if she was on chemo.) I was very surprised but her doc said it is because she has been fighting off the virus that has been going around and not to worry. She is better except she is very congested and has double ear infections now. (Darn those ears!) Allergy season is hitting hard too so that is not helping. But overall things have been very well thank God!
She got her report card too. Almost all 4's which translate into "exceeding expectations at this time". The only thing she has to work on is her handwritting and her flute lessons. I am so proud! I have been blessed with the most wonderful little girl (who is growing like you wouldn't believe!)
We keep in our hearts and prayers our buddies who are still fighting cancer. It is so tough and so sad- especially when the battle is fought repeatedly and can not be won on this earth. :*(
Hugs,
Heather and Brianna
Monday January 28, 2002 9:06 AM CST
Hello everyone!
First let me apologize for not sharing this experience with you sooner. We are back from Florida and I did it! 26.2 miles in less than (but barely) 7 hours. I am now part of the 1 % of the population that has completed a marathon. It was tough but an incredible experience and I would do it again tomorrow!!!
With the help of some generous people, I was able to raise $3803 for The Leukemia & Lymphoma Society. The central NY Team in Training (TNT) raised $62,405 and nationally we raised over 8.8 million dollars!!! There were 2411 TNT participants and a total of 18,500 in the half and full marathon making it the largest so far.
As I stated, my first marathon was such an incredible experience that words can only begin to describe how special it was. I proudly wore my singlet with the names of Brianna, my Dad (CLL), my uncle (NHL), and All-Kids on the back - and the American Flag, a Gold Ribbon, and Annie's Flowers and Scents logo on the front.
It was very tough. We left the hotel at 3 AM (after very little sleep) and the marathon started at 6 AM. I had shoe problems early on and fealt sick from what they gave us to drink and the gels. Around mile 12 or 13 it started POURING for at least 30-45 minutes, which did not help the sneaker situation at all (although at first it was a relief because my feet fealt like they were on fire!) I would not have made it in the 7 hours time limit if it wasn't for my coach Valerie and walking partner Bettyanne who pushed me faster than my legs wanted to go. I did great the day of our 20 mile run just weeks before but on marathon day my body really let me down. Through all the aches and pains we had so much fun that day (and the previous months training). We walked and ran through all the Disney parks, laughing and taking pics with all the characters who supported our efforts. By the end I had lost my voice and was very sore but I MADE IT!
Brianna and my parents met me before Magic Kingdom (around mile 9) and at the finish line. The spectators throughout the parks and on the route were fabulous-cheering us on from beginning to end. It was a very tough journey and I thought of our children's battles, relapses, and journeys to Heaven many times throughout the course. I know I had some very special angels helping me through that day and I carried them in my heart the whole way. There was a time towards the end when I could not stop crying-the spectators were great (they made Betty cry too!) cheering us on and yelling out the names of our honored patients. It was SO INCREDIBLE!!!
I am so blessed to have been able to participate in such an experience and want to thank everyone who made it possible. I can't wait to do it again and would love to have some of you join me! It is such a rewarding experience and a great way to raise funds for better cures for fighting all cancers. I now have a gold Mickey medal that I would wear daily if it wasn't so heavy. You can check out some of the pics taken at the marathon at the link below. We also have some new pics on the picture link of B's page.
Brianna is doing well and just had her 7 month OT check up last week. Counts were good and she is done with her pentamidine now. She gained 3 lbs in a month and is getting some very thick hair! It is still strange going to the clinic only once a month- but there is no reason to be there more often.
Well, I must run. Please sign the guest book and check out the new pics.
Hugs,
Heather and Brianna
Saturday, December 22, 2001 at 09:47 AM (CST)
HI Everyone!!! Brianna has her 6 month off treatment appointment this Thursday and everything is looking good! It was also her last IV Pentamidine (antibiotic to prevent pneumonia). YAY!!! So from now on, we go only once a month for a physical and lab work. It is so hard to believe that it has been 6 months and honestly I still feel like we are still on treatment even though she doesn't get anything. I think part of it is the time of year-we are nearing the anniversary of her diagnosis which always makes me think alot about how far we've come and how many little ones along the way that fought the same battle we did and moved on to get their angel wings. Plus I am friends with so many who are still fighting this journey so cancer has in no way disapeared from our lives. Memories of dx are so fresh and when the relapse fears creap up I can almost picture what would happen. I try not to go "there" to often.
The marathon I will be doing to raise money for The Leukemia Society is only 2 weeks away! I am getting so excited. This has been such an incredible experience! We did our 20 mile run last weekend and i hurt but it was such a good pain! I have this visual in my mind that if I can make it to the end that a cure for everyone, my Dad and uncle included will happen. A strange thing I thought of- January 4th we will be arriving in Disney for the marathon- that is exactly 3 years to the day of when Brianna started her chemo. Isn't that weird?
Well, I must be going now-2 days left and I still have so much to do! I have never been so unprepared. I hope everyone has a happy and healthy holiday and a great New Year! God Bless America (and our overseas friends too!)
Hugs, Heather PLEASE SIGN THE GUESTBOOK!
Friday, November 02, 2001 at 11:18 PM (CST)
As time passes us by, we are frequently reminded how precious life is. The tragedies of September 11th are beyond anyone's comprehension. While we mourn our nation's loss and pray for the families of the victims, the war against cancer continues.
Please help us fight this battle-we can't do it without help! In the past few weeks, 2 children I know have passed on to earn their angel wings and 2 more have relapsed :**( This January, I will run 26.2 miles in their honor, and in honor of all I know who have fought or are still fighting this monsterous beast. Won't you please take just a FEW MINUTES (really-that's all it will take)and check out the websites below to find out how you can help.
Brianna has been doing well and went to her 3rd monthly off treatment visit at the Onc. Her counts are almost all in normal ranges- yay! The first time in years! Allergies have been giving her a real tough time this season and the onc said they will get worse now that she is off the chemo and her immune system is rebounding. But other than that- everything has been AOK w/ her health. The school system approved the 504 accomadation plan to help her with some of the long term side effects of the chemo. This is great news considering that she is now entering the tougher grades where standardized testing is mandatory and more is expected of her. She is enjoying 4th grade so far, is in Girl Scouts and has started flute lessons. I apologize for not updating as much as I should- I have been very busy with the fundraising and training for the marathon. I have almost $2000, at least $1500 more to go to make the minimum required. Training is tough! I knew it would be - but I didn't have a clue how difficult this would be. It is even worse when the weather is not optimal (which can be quite often in Syracuse!) I think we are doing 15 miles on our group run on Sunday. My legs hurt just thinking about it! Hopefully it won't rain or snow. Well that all for now. Please sign the guestbook so Brianna can see who has stopped by. Hugs to you all- Heather
Tuesday, August 28, 2001 at 01:31 PM (CDT)
HI Everyone!
Summer is flying by and we have been so busy!Being off treatment for only a short time, not much has changed other than we only have to report to the oncs once a month. That is very strange and hard to get used to. Brianna's counts are good- her white count is even a little high because she has been fighting off pink eye, an ear infection and a sinus infection. We found out about the pink eye on last Tues. and the ped. told me to call back if she started running a fever or it looked worse. Well after spiking 102.7 fever that night, I felt that same sickening panic settle in when I called the next morning and the pediatrician told me to "Bring her in now!" even though they had no available appointments until late that afternoon. The ear infection/sinus infection was what spiked the fever so she is now on the dreaded augmentin to get rid of it. She is feeling much better- the Onc said the ped. was just being cautious (they even wanted us to come back the next day to recheck her but I told them no because we were already going to the ONCs and now that we are off treatment we will only see 1 doc a day- whatever needed to be rechecked could be done by Mr. Bundles (our onc who starred in the play Annie)
We have also decide that Brianna will be having a EEG to check for possible seizure activity caused by the chemo in her spinal fluid and are going to reapproach the school about a 504 accomadation plan due to the results of her repeat neuropsyche testing. The 504 was refused last time because her grades were still passing and according to her IQ she was eligable for the gifted program (if they had one). However, she has severe problems in certain areas of nonverbal learning and organization etc. The concern is that the issues she is having now will begin to snowball and become major problems as school is harder, more is demanded from her, and organizational tasks become more important. I do not see the need for her to fail before she is helped, and hopefully they will realize that attending to this now vs later is optimal.
We were blessed this weekend with a visit from the McQuin Family (see their site below) and are eagerly preparing for the Light the Night walk this September 21st, Childhood Cancer Awareness month this September (wear your gold ribbons!) and.....
After another child I know recently passed away from "the good kind" of leukemia, I have decided to participate in the Walt Disney World Marathon this January 2002. I have to walk 26.2 miles and raise at least $4000 to participate. Please check out my two links below and learn a little how you can help. I would greatly appreciate it if you would pass these on to all of your friends, relatives, coworkers, business associates, etc. That is the only way a cure for ALL individuals will occur- by everyone doing a little bit to help find a cure. I thank you for anything you can do to help- whether it is passing on this info to all you know, donating to the cause (every little bit helps!-don't think your donation won't make a difference because you consider it to be a "small amount"), or by ordering a candle, accessory or Boyd's Bear from the link below (think gift giving- the holiday are coming!)
As always, thanks for stopping by and please sign our guest book so we know you were here.
Hugs,
Heather
Sunday, July 08, 2001 at 12:19 AM (CDT)
Hello!
Well, it is official-Brianna is OT as of July 5th. She had her BMA, LP and final MTX shot all under anesthesia while her port was taken out (Yes-she kept it and is showing it off!) We haven't heard any results on the LP yet, but Dr. D said her bone marrow looked perfect! There is no reson to think that the spinal fluid won't be as well.
Ironically, she was admitted to 7H Monday night (7/2) for a high temp. So chemo ended full circle right were it began which was a very strange feeling. So much irony on the journey.
We watched this 4th of July fireworks from the hosiptal window just as we watched the New Years Eve fireworks the night she was diagnosed. We sat with some of the same nurses who took care of us from the beginning, and some of the same children-who had since relapsed and are battling this was once again. I couldn't help but think of those who walked this journey with us and didn't survive treatment as well as those who had taken care of us in one way or another, saying "You'll get through this" yet they are the ones no longer here. Such bitter sweet feelings-emotions that are so incredible and difficult to describe. Only those who have lived it really understand.
Another bit of irony-My Dad had his port implanted exactly one week before Brianna ended treatment- the day she should have originally been finished. He is still on the Campath and having reactions-but hanging tough.
Brianna is sore from the surgery but doing very well. Last weekend we went camping with her friend Clarissa (who ended treatment last week) and her family for a little celebration. On the 6th we celebrated with icecream sundaes at Friendly's with family and some friends. Tomorrow we are off to Niagra Falls for a few days.
It is still sinking in-We are OFF TREATMENT. No more weekly shots or 6-mp pills at midnight. No more spinals. I will never forget that first one; the worst day of my life when she screamed to me to save her and I could do nothing to ease her pain or make her understand why this torture was necessary.
Time to find a new normal-whatever that may be. Thanks so much to those of you who have sat beside us on this roller coaster. I don't know how I would have gotten through it without you.
Love, Heather
Thursday, May 31, 2001 at 02:33 PM (CDT)
Time is flying by. It is almost summer yet again (although you wouldn't know it by the weather). Brianna and I have many plans this summer, the most important of all being THE END OF CHEMO!!! Her last treatment is on July 5th when she will receive her last IM methotrexate, her last spinal, and her last bone marrow to confirm she is in remission. She is also getting deported that day (removal of her central line) so the onc will do the LP (spinal) and bone marrow when she is under. This is such a relief! After that it is appointments once a month for physicals and blood work. Her i.v. antibiotic will continue though January and hopefully her counts will start to rebound fairly quickly. Usually it takes a year or more after chemo ends to get back into normal ranges.
On a sad note, our Onc who always takes care of her had a stroke last week. Please keep her in your thoughts and prayers.
My Dad will be starting his new chemo (Campath) this coming week. It was postponed over a month because he had to have his tonsils out because they were to big to radiate. Hopefully this new drug (just approved by the FDA a few weeks ago!) will put him in remission and the remission will last until they can find a cure.
As always, thanks for checking in and please say hi in the guest book so we know you were here. Prayers to all of you who are also fighting this monster!
Heather
Thursday, March 29, 2001 at 06:19 PM (CST)
Hello everyone. Well Brianna made it to both her parties this weekend and the Camp field trip but she ended up starting a low grade fever Sunday night. On Monday, she went in for counts and a check up because the fever was up and her ears were hurting. Counts were up from Thursday: WBC 2.0, Neutrophils 52%, ANC 1040, Hemoglobin 12.0, hematocrit 34.8, and platlets 284. Chemo was still kept on hold due to the fever and ear situation. They kept her on the Amoxicillian and added Augmentin and Flonase spray to hopefully help with the cough & congestion which are still hanging around. They also said we could treat the fever-which averaged 101-102 all week, with Tylenol. We were then referred to the ENT, which was Wednesday's appointment. The ENT did not want to put her through the agony of draining her ears again, hoping that the flonase would help the fluid drain itself. He said we need to keep a close eye on them, and if she continues to have these problems, we will have to consider tubes. Hopefully the end of chemo (July) will end the infections/fluid. Tubes would be a big pain because she loves to swim and has wet gym in school. But if that's what it will take to end this, it will have to be done.
Today we went in for her monthly iv Pentamidine. Her counts were down a bit from Monday: WBC 1.9, Neutrophils 40%, ANC 760, Hemoglobin 11.8, Hematocrit 32.5, and platlets 213. They were high enough to get her Methotrexate shot, and we were told to restart her 6mp tonight(ANC must be 500 to get chemo). Good news to be able to restart the chemo - I just hope this won't cause them to go down again seeing that they aren't that high and the Augmentin can also make them drop. She also had some sort of splotchy rash which kept coming and going that no one was to sure what it was.
Tomorrow is her best bud's birthday party- a sleep over with 8 girls! She is very excited. Well that's it for now. Take care!
Friday, March 23, 2001 at 11:19 PM (CST)
Hello All :o) Things are up and down here. Congestion and cough started about the 14th and progresively got worse until the 19th when B started running a fever and was sent home from school. Not too bad, 101-102 range. Had to go to the hospital for the usual blood work, etc. Chest x-ray came back negative and counts were good: WBC 3.3, nuetrophils 83%, ANC 2739, HGB 11.8, HCT 35.5, platlets 297. They decided to put her on PO antibiotics to treat a sinus infection, continue chemo and sent us home(Yay!) Well, 3 days later we went back for her weekly visit. Both ears are full of fluid (but no infection), fever is gone but cough and congestion are still going strong. Blood work revealed WBC 1.2, neuts 38%, ANC 456, HGB 12.5, HCT 36.5, platlets 288. Wasn't expecting that drop! Needless to say no shot and chemo is being held for a week and hopefully that will help this bug go away. We do not want a repeat of February. Brianna has two birthday parties and a Camp Good Days Fun Club event this weekend and has absolutely refused to go back to the hospital again this week (which she knows she will have to if things get worse or the fever reappears). So hopefully those neutrophils heard her very adament request and will get working on fighting this bug!
We have started working on the Light the Night for next Sept. for the Leukemia and Lymphoma Society. Looking for some new ideas to help this event grow (hint, hint ;o) Well that's it for now. It's way past my bed time. Take care and hugs to all. Heather
Saturday, March 10, 2001 at 03:40 PM (CST)
Hello everyone! Been a while since last update (usually means things are going well) Counts have been ok and B has been going to school. Had strep throat over winter break, but that is better now :o) Been busy with lots of things going on. Brianna is an honored patient for several TNT runners/cyclists for the Leukemia and Lymphoma Society. Each one of them has dedicated their time and efforts to raise money for LLS using Brianna as part of their "inspiration". They are currently training for their upcoming marathons (about 26.2 miles!!!) and raising money to help end Leukemia and Lymphoma. What an incredible group of people!
On Thursday (3/8), B and I had a little celebration for her last medicated spinal!! She will only have one more at the end of treatment (less than 4 months to go)to comfirm remission and no CNS disease.
On a sad note, Grandma Catherine-our foster grandma from the hospital passed away this week. She was an incredible woman who dedicated her weekdays volunteering in the playroom. She was always helping others and making us smile. We will miss her :**(
B was impressed when she saw that over 1000 people had visited her site. Please sign her guestbook so we know who you are. Thanks and hugs to all!
Thursday, February 08, 2001 at 03:32 PM (CST)
Counts on Monday: WBC 2.2, HGB 12.1, HCT 34.8, Platlets 318, Neutrophils 19%, ANC 418, Holding chemo.
Today: WBC 3.1, HGB 13.2, HCT 38, Platlets 304, Netrophils 33% ANC 1023. Chemo given, back to school tomorrow!!!
ENT said ears look good!!!!! Finally
Hugs to all,
H&B
Friday, February 02, 2001 at 11:22 AM (CST)
Counts are slowly improving but chemo is still on hold. ANC was 190 on Monday when we went in for a recheck on the ears which were still problematic. After several consults,they decided to give it a couple more days on all the antibiotics to see if they improved on there own. On yesturday, ANC was 340 (must be at least 500 for chemo). ALl other counts are ok but the white count is taking its time to improve. So Brianna is still out of school for a bit. The ears were yet again worse on thursday, so off to the ENT specialist who drained them both so they could culture the "yuck". This was not a good day, as they had to cut a small slit in both eardrums to get to it, then flushed it (because it was so thick) and suctioned it out (very loud which made the suction painful) Not the worse proceedure so far, but definately not a pleasant experience. She is feeling ok now, ears just a little bothersome. She has antibiotic drops to be put in twice a day which she doesn't like not because they are painful, just annoying. Will be at the ONCs on Monday for counts again, then back on Thursday as well for ONC appointment, ear recheck, and therapist (yay, another long day). Will update again next week. Please sign the journal when you stop bye. Brianna loves to read who has been here. Thanks! :o)
Sunday, January 28, 2001 at 11:46 AM (CST)
Counts are very low this week. ANC is only 90 so we are stuck inside for a while. Brianna is not to happy because she will be missing ice skating, gymnastics, and Girl Scouts this week :o( All chemo is being held until her ANC reaches 500. The ear infections got better, then worse again as her counts dropped so she is staying on the augmentin and docs have added amoxcicilian as well to try to kick it in the butt. If they continue to get worse, she will have to have some of the stuff in her ear taken out to be tested to find out how to treat it. Oh that sounds like fun (NOT!) Hopefully things won't get to that point. Until then we are just hanging out with movies and games. I will update again next week.
Thursday, January 18, 2001 at 12:49 PM (CST)
Hello all. Just got back from chemo. Counts were good last Thursday and the LP (spinal) went ok. Physical before chemo revealed double ear infections with probable sinus involvement. So back on the augmentin which she hates because it really bothers her stomache (prednisone week also so it makes it worse). Missing lots of school due to this combo plus lots of aches from the vincristine. But LAST DOSE WAS TODAY!!! Tonight I will be doing the Happy Dance as I flush the rest of the prednisone. Counts will probably drop next week. I will do another update then. Hugs to you all and thanks for signing our guest book. We love to see who has stopped in.
Tuesday, January 09, 2001 at 11:52 AM (CST)
So sorry it has been such a long time since the last post. Actually I believe I have posted once since Oct. but for some reason it didn't show up :o( Things are going pretty well here. It has been 2 years since dx (I hate anniversaries!) Only 6 more months to go! That means only 1 more bone marrow, 3 spinals, 1 prednisone pulse, 2 doses of vincristine, 12 doses of pentamidine...ok I won't go into counting the pills, weekly shots, and blood draws for counts. I think you get the point that the countdown to the finish line has begun! Counts have been ok although she gets a double dose of vincristine with spinal and prednisone starting thurs. These are the meds that made her counts drop so low in Oct. so I am sure we will be due for an 'unexpected' trip to the ER in the middle of the night. Those fevers can never occur when the clinic is open! (LOL) Gotta run. Will post again soon. Thanks for signing the guest book. We love to read it.
Tuesday, October 17, 2000 at 10:17 PM (CDT)
Hi All, Sorry, its been quite awhile here. Been very busy with everything going on. The Light The Night walk raised over 101,000 this September and B was on the news promoting the walk and Childhood Cancer Awareness (wear your GOLD RIBBONS!) Brianna is enjoying 3rd grade, but has been out of school a couple of weeks now. She has had fever and low counts (ANC down to 210 at one point), last chemo given was 9/28. Her body has been fighting some kind of infection, no one is sure what. All cultures are negative at this point (still waiting for a couple to grow). We are also waiting for the results of a mono test. Hopefully chemo will resume thursday, but everyone keeps saying wait and see. Anxiously looking forward to Halloween.
Hugs to all! Heather
Tuesday, October 17, 2000 at 10:17 PM (CDT)
Hi All, Sorry, its been quite awhile here. Been very busy with everything going on. The Light The Night walk raised over 101,000 this September and B was on the news promoting the walk and Childhood Cancer Awareness (wear your GOLD RIBBONS!) Brianna is enjoying 3rd grade, but has been out of school a couple of weeks now. She has had fever and low counts (ANC down to 210 at one point), last chemo given was 9/28. Her body has been fighting some kind of infection, no one is sure what. All cultures are negative at this point (still waiting for a couple to grow). We are also waiting for the results of a mono test. Hopefully chemo will resume thursday, but everyone keeps saying wait and see. Anxiously looking forward to Halloween.
Hugs to all! Heather
Tuesday, July 25, 2000 at 09:41 PM (CDT)
Hello Everyone! Long day today but all went well. Brianna had intrathecal methotrexate (in spinal fluid) today with her other chemo. The proceedure went pretty well considering what a difficult thing it is to go through. She is a little achy but other than that doing well. Counts were good again. WBC 2.7, Neutrophils 55%, hemoglobin 12.2, hematocrit 35.3, platlets 273 and ANC 1485.
We went camping this past weekend at KOA and to Enchanted Forest, courtesy of Give Kids the World (Love that place!). Had a great time although the weather was a little chilly for water rides. Looking forward to family day at Camp Good Days this week, and of course Brianna is still counting down til her b-day.
We are trying to come up with a name for our team for the "Light The Night" Leukemia walk. I would appreciate any suggestions! So far we have "Reaching for the Stars" and "Cruising for a Cure" as possibilities. Any ideas? Also, if you would like to sponser us or join o
Tuesday, July 18, 2000 at 06:33 PM (CDT)
Weekly chemo appointment today. Went very well, much better than last week (she totally flipped out screaming and crying when it was time to have her port deaccessed (pentamidine) and methotraxate shot. It was a very difficult day for what is usually some of the 'easiest' proceedures she gets. The childlife special was stunned. Well, we got to the bottom of why that was so traumatic last week, and became enlightened to one reason why she has been very angry at times. During counseling, she admitted in a whisper through tears that she misses Scott (one of her favorite nurses who died 1/00) and is mad/sad that he is gone. This was the first time she said his name (she usually spells it or says you know who when he is brought up).It was good to have her acknowledge this.
No counts this week. Last weeks were very good. WBC-2.9 Hemoglobin-11.8 Hematocrit-34.9 platlets- 367 netrophils 59% ANC 1710
Thanks for stopping by! We love reading the guest book to know who visit
Saturday, July 15, 2000 at 12:07 PM (CDT)
my whole message didn't fit so here is the rest of it. We went to Cocoa Beach too. We had a lot of fun. One of my friends from the hospital named Dakota is there now. I can't wait to see how her trip went. I am going to help out the Leukemia and Lymphoma Society stop cancer by walking in the Light the Night walk. I am going to try to get 200$ at least. I am there honor patient this year. I am really excited! Well I have to go get ready for my cousin Ava's birthday party. Bye. Love Brianna
Saturday, July 15, 2000 at 11:41 AM (CDT)
Hi my name is Brianna. I was diagnosed with cancer New Years Eve 1998. Having cancer really stinks but I have made some new friends and that is kinda cool. Something really cool happened to me a while ago. I got a wish from a company called Make a Wish. I wished to go to Disney World. We stayed at a place called Give Kids the World Village in Florida. They had a pool, icecream store, choo choo train, gingerbread house restaraunt, magic castle and a merry go round. The characters from Disney World came to visit us there. I got to take my entire family! My Mommy, my Boppa (grandpa), my Grammy, Auntie Eryn, Uncle Kevin and Uncle Pete came with me. The airplane ride was really neat. We got to see all kinds of cool clouds. I even got to meet the piolet and I sat in his seat and we got a limo ride to the airport and to the hospital when our trip was over. We had a lot of fun. We went to Epcot, Magic Kingdom, Animal Kingdom, MGM, Universal Studios and Islands of Adventure and Cocoa B
Friday, July 14, 2000 at 10:06 PM (CDT)
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----