Monday, April 28, 2008

We have lots and lots to report, but if I put it all in one post, no one could make it through, so a little at a time!

We got back home Saturday night about midnight. The girls had a great time and Grandma and Grandpa's house, and of course with cousin Sydney too. I sure wish we all lived closer together. We'll get to see them all again in June, for Hannah's no more cancer celebration...more on that later. Here are some pictures from the fun..the girls feeding the birds with Grandpa.

We also went to Chicago one day on the train from Michigan City to see the play Wicked with my mom. We stopped first in Chicago to see "the bean", which is this huge silver blob that everyone says looks like a coffee bean. It was really fun underneath the bean to see the prism effect. Some more pictures at the bean and at lunch where Hannah lost her tooth...

Alot more to write about our spring break, but I'll wait for my next post. I wanted to mention the 4H horse show. After getting home after midnight on Saturday, we were at the 4H preparing for the horse show the next morning. It wasn't fun getting so little sleep...especially because little Tod decided to keep Dave and I up the ENTIRE NIGHT when we got home with whining. Don't know why, but he seems to be back to normal now, thank goodness. Hannah had told me last week that she wanted to win Champion at this show because at the last show she was in...over a year ago...she got Reserve Champion (second place.) I really didn't think there was any way Hannah would come close to winning, but of course didn't mention that to her. I just tried to remind her that this show was only for fun, we do our best, and just have a good time, regardless. Well, guess what? Yep-GRAND CHAMPION. There were only 4 girls in her competition, and Hannah did great. Still not back to where she was before the tumor, but really coming along well. And Colby did great! this show Colby moved up to ride with the experienced girls (whose ages range from 14-20) and are all more experienced than Colby. To say the least, Colby was a bit apprehensive. She also did GREAT, and won lots of ribbons too. More pictures...

So lots more to write, especially about our visit to Pine School, our visit with Sydney, etc. etc. Thanks for keeping up with us,

xoxo Kim

Friday, April 26, 2008

Well I must say that Hannah continues to surprise me. Thursday we went to Pine School in Indiana to speak with a few classes about Hannah's Cans for Cancer program. Our friend Anna, a 5th grader at Pine School and the head of the student council, is heading up a "Hats on for Cancer day" at their school next week to benefit Hannah's Can's for Cancer program.

Hannah was fine until we got to the school. Then she got nervous (along with Colby) and didn't want to go into the classroom. I finally convinced her that the kids were 2nd graders, and so much younger than she (ha ha) and that they really wanted to hear what she had to say. So the teacher put Colby and Hannah and I standing up in front of the class ("oh no" I was thinking). Anna introduced us and the Hats off event for next week, then Hannah began talking about her program to help other kids with cancer. AND DID SHE TALK...AND TALK..AND TALK. She did awesome! Everyone became more comfortable, and Colby chimed in to add things too. I was so proud of both of them.

Then we went on to another 2nd grade classroom, and MORE TALKING. It was great. And, the whole time there was a reporter from the local newspaper and a photographer snapping many pictures. We were so impressed with the work that their student council has done. They made posters to hang around the school with pictures of Hannah to encourage everyone to participate. They also said they want to challenge our school...Cutchogue East...to have a Hats on for Cancer and see how much money they can raise too, and see who wins! Hannah is looking forward to talking to her own school about the idea!

So tomorrow is cousin Sydney's first communion and we're all excited. We have been having a great time with everyone, and the girls love to hang out with Sydney. Today we all went to the salon to get our hair done, I'll have to write about that later. Hannah was happy with painted nails and pigtails!

xoxo Kim

Wednesday, April 23, 2008

Just a quick update tonight, we are still in Indiana visting Grandma and Grandpa. We've been pretty busy every day with lots of fun things they had planned for us like feeding the ducks at Lake Michigan, painting benches for the garden, roasting marshmellows, playing Uno Attack, and today we went into Chicago on the train to see the play Wicked-WOW! Both of the girls really enjoyed it, and so did the older girls too.

Tomorrow Hannah is going to an elementary school here to speak about her Cans for Cancer program. I really don't know what to expect, since she is still pretty reserved with strangers, but she says she really wants to do it. She was invited by Anna Reyes (the daughter of a friend of mine from Michigan City). Anna is the president of the student council at her school (WOW) and organized a Hats for Cancer day. The kids at the school will pay $1 and can wear a hat in school for the day. All of the money raised will go to Hannah's Cans for Cancer fund. Isn't that such a cool idea? I didn't even know about it until they heard we were coming to Indiana and asked if Hannah would like to come into the school to talk to the students about her fundraising effort.

Hannah has prepared a speech about her program, how we started it, how it works and what she does with the money raised. Colby will be there too to help and support Hannah. I heard that even the newspaper will be there...so we'll see! I'll update with more information after tomorrow!

xoxo Kim

Friday, April 18, 2008

We are now officially on vacation. The girls have the entire week off next week for spring break. We'll be very busy though, visiting Grandma and Grandpa in Indiana, then to Illinois to see cousin Sydney make her first communion.

Hannah is doing well. Tonight I had her doing some exercises on the mini trampoline and the big ball. Her balance is still off and she has trouble with things that require coordination, so working on the trampoline is great exercise for her. She was having fun, although she ended up hyper extending her knee again. Her muscle strength is still not that great. It wasn't bad though, and she was up and about in no time.


Hannah declared today "I'm ready to just go to Grandma's." We'll update from Indiana....

xoxo Kim

Thursday, April 17, 2008

Yesterday was a very sad day here in our town. Deacon John Bopp, a beloved member of our community and church died unexpectedly on Sunday from complications from surgery for colon cancer. He was just diagnosed recently, and I hadn't been aware that he had cancer until I heard of his death.

Deacon Bopp baptized Colby, and most recently lead her training classes to be an altar server. I have never seen a more patient man! He was just very caring, very easy going, and a pleasure to know. He was so gracious to our family after Hannah was diagnosed and told us about his son that had died of cancer a few years back. He always used to remark that he had a little granddaughter by the same name-Hannah Grace. We all met Hannah Grace the night of his wake, what a cutie she is.

Last night was a mass in the church for Deacon Bopp. It was very emotional for the altar servers, and in turn for the community. We were all there, but Hannah wasn't feeling well, so she went home early with Dave. She really didn't want to leave, but it was a good thing she did, she didn't feel that great at home either.

It is difficult for me to go to a funeral without thinking of all our little cancer warriors that have lost their lives. I thought of Julian and Jessica and Shelby and Cody and Sarah, I could go on and on. It's hard not to visualize those little children in their little caskets. Then, it's hard to hold back tears. So, I find funerals difficult. But one thing a deacon said last night stuck with me. He said "the children here tonight cry because they do not understand death the same way we do, and they are sad. Our life here on earth is only time spent preparing us to go home with God, which is our destiny." Or something very close to that. I found that very interesting. Our time only earth is only to prepare us for our ultimate destiny. Some of us have more time than others, some of us have such a very short time.

xoxo Kim

And to our friend Sister Anne-we were so happy to see you there last night, you looked great! Keep up the good work, we all miss you and can't wait to see you back on the North Fork very soon! We love you!

Sunday, April 13, 2008

Just a quick update...Hannah had a good weekend. No horseback riding, but a little bowling instead! Hannah was not happy when we took the steri strip off of her incision. I just wanted to take it off to be sure it didn't get infected, and the area needed to be cleaned. She finally finished removing it, it was stuck a bit on one side, and started bleeding. That really made her unhappy and she was crying and screaming for the doctor! All in all, it looks good and I'm just going to watch and see that it closes up and heals nicely.

She is still having pain with some movement of her arm. We are not going to swimming tomorrow, especially with the bleeding tonight. She will be going to school all week. She is counting down the days now to Grandma and Grandpa's house for spring break next week. We are spending the week in Indiana with them, then to my sister Sue's house for Sydney's first communion the next weekend. Hannah has wanted to go to Indiana for a while now, we couldn't visit last summer, or last Christmas, so we are way overdue! Sounds like Grandma has lots of things planned for us.

A big thank you to everyone for all the donations (cans and money) for Hannah's Cans for Cancer. Hannah collected $21 total from the can recycling this weekend, the biggest amount ever! Hannah is looking forward to delivering the Wii to Schneider's hospital in a couple weeks and we have a few ideas of more ways to help....coming up soon!

And we couldn't leave out...GO YANKEES....for all of our Boston fans out there. Another year of fun coming up. Thank you to the Griffins for that information on the Boston College game, of course Dave was happy that BC won (his alma mater). It's Sunday night and Boston just scored again...6 to 1, ugh! With that I'll sign off.

Have a good week everyone, thanks for stopping by and checking in on us. I'll leave you with a couple pictures of one of the girls' favorite activities now...training their dogs to jump.


xoxo Kim

Thursday, April 10, 2008

Hannah has been out of school since her surgery on Tuesday. Yesterday she was quite tired still and very sore, hardly moving at all. She got up at 11:30am! During the surgery, the doctor went in at the same incision site, took out the port and catheter, and stitched the vein that the catheter was inserted in. He then put in internal stitches to close the incision, and used a steri-strip on the outside, which is great, since no stitches will need to come out later. It looks fairly good, with no swelling, just a bit of residual blood. Hannah just can't stand to look at it and got very upset when she first saw it.

She still hasn't been able to get it wet, so no bath or shower yet! Today she was better, a bit less sore. Here is what she did today....more baking! See how she is holding that left arm up? I had her outside today, since it was so nice here using our pitch back, throwing and catching some balls. She did well. She danced a bit tonight with the girls scouts, although from time to time I could tell it was hurting her.

She is going back to school tomorrow. The doctor told us that by tomorrow she can get it wet, and the bandages will come off by themselves. She does have to be careful not to bump it or get hit at the site for 2 weeks. After that, she is free to resume all normal activity! I hope this will also help with her posture. She walks like an old arthritic person, with her left shoulder dipped down as she shuffles along. She never wanted to straighten up and hold her shoulders back because she didn't like the way her port felt when she did it. We'll be working on that now.

We won't be doing gymnastics tomorrow, and most likely no horseback riding either on Saturday, but we'll see. Dad is taking her to riding this weekend, so we'll see how that plays out!

xoxo Kim

Tuesday, April 8, 2008

We're home and all is well. THAT PORT IS OUT, for ever and ever (we hope and pray). Hannah did really well today. We arrived at the hospital at 5:30am this morning and were all checked in when they came in to say the doctor was in surgery with an emergency appendectomy. So, we waited! They took Hannah and I to the back room at about 9:20am. I was able to go back with her while they used the mask to put her to sleep. Thank goodness the nurse anesthetist was very good, singing her to sleep because Hannah was not happy and a bit upset at this. They have never used the mask before, she has always had an IV or her port was accessed and they used medicine to knock her out quickly. This took a little longer, but as it started to take effect, she became sleepy and much happier. The surgery officially began at 9:45am. She was done by 9:56am, about 10 minutes. The doctor came out to tell us all was good, went perfectly. She has to be careful for 2 weeks not to hit the area. All stitches are internal, just a surgical strip on the outside (that Hannah wants no part of, and can't look at). Nothing needs to be removed, and as long as it heals nicely, we're all done.

Hannah is quite sore at the port site. She won't move her arm, the same thing she used to do when she was accessed. It will most likely be sore for a couple of days, so we'll just see how it goes. She is already cleared to go back to school, when she feels up to it.

The doctor is saving her port for her. It first has to be cleaned, then sent to pathology. Insurance won't cover the surgery unless pathology confirms that it actually came out. We'll get it back in a couple weeks. Hannah is deciding exactly what to do with it. I like the idea of trampling it with a horse, so I'll be sure to pass that one along Ann!

Here are a few pictures from the day. As I look at others' websites, I wish I had had more pictures of Hannah when this experience first started. So even though it may seem strange, I was taking pictures today as she prepared for the surgery. I think she is used to it, she didn't think twice! This last picture was just taken here at home, after some soup she asked for something really yummy, so she had a double scooper ice cream cone. Unfortunately, she didn't like the one ice cream that much and ended up gagging on it. Needless to say, we won't be having that one again.

Thanks to all of you for your well wishes and prayers.

xoxo Kim

Monday, April 7, 2008

So tomorrow is the big day, no more port! They called tonight and said Hannah was the first patient for surgery at 7:30am. This means we have to be there at 5:30, so we'll have to leave by 4:30 to get there. Sounds like fun!

Colby is at her friend Emilie's house for the night, and Hannah is already in bed. I will update tomorrow after we are home safe and sound.

Lots of prayers for a safe and successful surgery.

xoxo Kim

Saturday, April 5, 2008

Here is the picture I promised...a little blurry from my phone, but you get the idea anyway. This is Hannah with her friend Alec. Hannah was just about to sign Alec's pillow, hearts and all. He is such a sweetie!

Please keep him in your prayers for a quick road to walking...and running, very soon!

xoxo Kim

Friday, April 4, 2008

Happy Birthday to Grandma...another year young!

Just a quick update tonight. Hannah and I met with the anesthesiologist today to go over the plan for Tuesday. I had many questions for him including: will Hannah be intibated, what drugs will they use, will they access her port or only use the peripheral IV, will she have the IV following the surgery, etc. He didn't answer any of them! His answer was "ma'am, there are many ways to do things and 50 anesthesiologists on staff and we all do things a bit differently." How could that be? I told him I was surprised there wasn't a standard protocol for this routine type of surgery. Again his answer was, more than one way to do something...ask the doctor when you get there. Hhrrrmmppf! I know that's not even a word, but it was pretty frustrating and totally a waste of time. It only served to make Hannah upset when he said they may access her port (even though we were told they would use the mask to put her to sleep, not the port) and he said she would have the IV still in when she got to recovery. I figured as much, since they need to make sure she is ok before they remove it. That immediately brought on the tears, she just hates IV's ever since January 30th, 2007.

Dr. Scrivins asked Hannah the other day if she would like to keep her port as a souvenir! She answered no very quickly until he told her that there was another girl that kept hers so she could run it over with the car! Of course she thought that was pretty cool, and now she wants to keep it so she can try that trick herself. He said they clean it up and sterilize it, then give it to us in a couple of days. That should be interesting.

We did have some fun today visiting our friend Alec in the hospital (his blog address is www.4theluvofalec.blogspot.com). He is in St. Charles Hospital, where Hannah was after her initial surgery, for physical therapy. He looked great, and is working very hard up there! We recognized a couple of the nurses, and they recognized us too. We really enjoyed seeing Alec and his mom Amy and his angel brother Sean, such a cutie boy! Hannah and I went down to the therapy room to look for Valerie, her therapist, but she wasn't in today. Hannah then started crying saying she wanted to STAY! She wanted to be there and go into the therapy room to do some work. Surprising, right? Keep up the good work Alec, you're doing GREAT! You too Amy!

I told Hannah that we were going to gymnastics tonight, that was her therapy, so that helped! She did great at gymnastics today too, doing many things that she couldn't go when we first started just a few short weeks ago. Up until the very last thing she did, where she landed wrong and just stretched her back a bit, she was awesome! I think she was more tired than anything, and was feeling fine afterwards. She worked so hard, it was great to see her jumping saying that her legs didn't hurt anymore!!

Did I say this was a quick update? I have a photo on my cell phone that I took of Alec and Hannah today, so if I can get it downloaded onto my computer, I'll share it tomorrow. Have a good weekend everyone.

xoxo Kim

Wednesday, April 2, 2008

We met today with the surgeon who put Hannah's port in and will take it out next week, Dr. Scrivins. Very nice man, he set us at ease about the procedure. I had some questions about anesthesia, recovery, Hannah's counts, complications, etc. The doctor said he has done over 1,000 port removals and has never had one break before. He has had 2 cases where the catheter came unattached from the port itself, and got stuck in the artery, which is why he does these procedures in the regular OR, rather than only in the ambulatory surgery area, where they don't have all the resources available if you need them. Hopefully, we won't need them. The whole process will take about 3 hours, including preparation, anesthesia, operation (about 30 minutes), and recovery.

We have another meeting with the anesthesia team on Friday. I want to discuss what kind of drug they will be using, since Hannah doesn't react that well with most of them. We learned that in Boston, waking up over and over after radiation kicking and screaming. I know they will put her out with the mask, then insert a peripheral IV for the procedure. I will get to put on the bunny suit and accompany her back into the operating room as they put her to sleep.

Today she started crying in the doctor's office, asking if was going to hurt. She was referring to the IV, when she heard them mention IV, she got upset. That is the only part she really cares about, not really knowing what to expect from the surgery itself.

I just keep telling myself that this will be a walk in the park compared to the other surgeries she has been through. We've made it through those, so this should be easy.

Now on to the exciting news....THE WII'S HAVE LANDED!! Hannah and I stopped by Walmart on the way home from the doctor's office, and they didn't have any Wii's, but directed us to a store that did! They held one for us, and when we got there, they allowed to us buy two of them! It was pretty exciting for both of us! Hannah plans on giving them to Schneider Children's hospital, and Spaulding Rehab Hospital in Boston. We have already spoken to Schneiders to be sure they would be able to hook them up and use them. They do have a Wii already in use in the transplant area, so it is possible. We will either donate it for the 4th floor oncology inpatient ward, or the 2nd floor clinic where Hannah makes her visits, they said it's our choice. There really isn't that much room on the 2nd floor, so our thought it to put it in upstairs, where they kids are there for longer periods of time, and really need the activity they can get with a Wii!

We really have been inspired by Team Henry. Henry Tucker is a little boy who was diagnosed with B-cell ALL, a common form of childhood leukemia. After 3 years of remission, Henry's cancer came back as a rare and very aggressive form of t-cell leukemia. Henry died in June of 2007. Henry's family have created the Henry Tucker Foundation to raise awareness of childhood cancer and to offer support families dealing with emotional, financial and physical difficulties. They are doing amazing things, leading the way to get the Conquer Childhood Cancer Act to the floor and passed, among other things! They are certainly one of the most active families in the world of childhood cancer, I admire them. This team sets the daily strategies that I and many others have been following for calling our Senators and Representatives. They do so much more, it's just amazing. We have been inspired by Team Henry's donation of 11 Wii's to Henry's hospital...and then 11 more! A total of 22 Wii's! WOW! They donated enough for each room, plus each transplant room in their hospital. Henry was one special little boy, and he has a lot of people working in his memory. You can check out his site, and everything they are doing click HERE. You can usse my email address if you just want to view his site and don't want to register.

The girls do not have school tomorrow due to parent teacher conferences, so they are up late tonight, enjoying American Idol. Tomorrow we'll just enjoy some down time together. Doing stuff like this.....

xoxo Kim