Monday, March 31, 2008

It was another busy weekend here. Colby had her school play on Friday night and Sunday afternoon. She had 3 parts in 2 plays, and she was great! Go Colby!

Hannah had the science fair that she did with her friends Mary Kate and Charley-the Amazing Water Wheel! Hannah loves doing the science fair.
It just reminded me how far she has come. Last time this year we were in Boston in the middle of her radiation treatments while everyone else was at the science fair, Hannah was her own science experiment! Job well done for all the girls!

Sunday Dave took me to a surprise Broadway play in NYC for my (29th ish) birthday! We went to see Chorus Line, it was fabulous! A long day, but a good day. The girls had fun with Aunt Kathleen during the day, and surprising me with cake and gifts when we got home.

Hannah's surgery for port removal is next week already-Tuesday, April 8th. We have to meet with the doctor this week as well as the anesthesiologist to clear her for surgery. It is an outpatient surgery, so she won't have to spend the night. Thank goodness because I just unpacked my hospital bag finally last week!

We'll keep you updated as we get closer. Thanks for checking in with us.

xoxo Kim

Thursday, March 27, 2008

I write this post as my teeth are gritted tightly together. I looked down to find our adorable Tod with my computer power cord once again chomped in half. I have been so careful to put it away every time I am not using the computer. Well this time I WAS using the computer, and I looked down to see the wire in half in his mouth. Took him about 30 seconds. I was so mad, and believe me, he knew it! I have only had this last one for about 2 weeks. If anyone knows how to splice these together, let me know. I have already checked with our local computer store, and they don't do it. It's a wire within a wire, and Dave is figuring that out right now as he is taking it apart in an attempt to put it back together. I now have three useless cords here, and once again no way to use this computer until I buy another. GRRRRRR....

But, that's not what this post is about. This post is about what a GREAT day we had today. We went into clinic this morning to get Hannah's blood levels checked. Her levels were basically almost identical from last month, a couple down just a bit. I was concerned, but the doctors weren't. They say her bone marrow is suppressed from all of the chemo, and it takes long time to come up, and that she may always be a bit low. Here are her numbers:

White blood count 2.88 Normal 5.0-13.0
Red blood count 3.69 Normal 3.90-5.30
Hemoglobin 12.2 Normal 11.5-16.0
Platelets 237,000 Normal 140-400
ANC 1840 Considered at risk under 1500

Here is Hannah at clinic today drawing a road for her toy car she was playing with while waiting for the doctor to come in. So these counts are considered acceptable at this stage of the game. There is no reason to try and raise them, just have to wait. Everything else checked out fine. They told us we could go ahead and take her port out! Typical wait time is 6 months post treatment, but they told us that if Hannah would recur, she would need a different type of port and they couldn't use the one she already has for the new kind of chemo drugs, so we might as well take it out. There words were "Hannah's prognosis is very good and you can have the port removed whenever you want to." Aren't those GREAT words???? We're going to call and get it scheduled with the doctor that put it in at Stony Brook Hospital to remove it. I thought she would be excited, but she was crying, since #1 it requires surgery and #2 she realizes that for all further MRI's she has to get stuck for an IV for the contrast dye. Which is worse, port access or needle stick? I guess all needles are not a happy scenario as far as Hannah is concerned.

*****UPDATE-my wonderful husband has just successfully spliced the cord together and has saved Tod's life*****

So tomorrow I will check on scheduling the port removal. This is probably the only doctor whose name Dave and I can not remember, so I have to look it up.

Hannah also made a special delivery to Childlife today. She delivered some of her favorite craft items-foam sticker projects. Last time we were at Michael's she wanted to buy these since she said "when I was up on the 4th floor (inpatient) I was bored sometimes and would have liked these to play with so maybe the other kids will like them." Here is Hannah delivering her goodies to Faye. We stopped at a couple places on the way home to check for Wii's, but nothing yet. Next week the plan is to talk to the manager of a couple stores here in town to see if they would be willing to notify us when they get their next shipment. If that doesn't work, we may contact Nintendo directly, as Josephine suggested, to see if they would help.

We noticed today as we got out of the elevator that Hannah's picture was on the wall! They have pictures of the hemotology/oncology patients and rotate them every once in a while. I know you can't see the picture very well, but here is a photo of Hannah with the photo of Hannah! In the picture, she was sitting down in front of a very colorful fish wall, it's a nice photo. I was surprised to see how much her hair has grown since that picture was taken, I think it was from last month.

Wonderful day for us!! As I sign off, I wanted to mention our dear friend Sister Anne. She was injured on Monday by a car, and is now in a rehabilitation hospital with a broken leg. We pray that her recovery is swift and she is as pain free as she can be right now! We hope you are back in Cutchogue with us very soon! Please join us in keeping her in your prayers.

xoxo Kim

Tuesday, March 25, 2008

Our life is pretty much in a new normal routine now. Everyday the kids go to school, then to activities. Hannah is now on a regular routine with school, I don't wait by the phone all day any longer for them to call (although I do always have the phone with me.) Part of my routine every day is still research-research for recurrence protocols. I know you may be wondering why. But I would rather be prepared and at least somewhat familiar with what's out there, rather than be blindsided totally. I also follow many kids websites. Some of these kids are doing well, and others have already been killed by cancer. Killed? Yes-when you hear their parents talk about how their children were taken from them, they are clear-cancer killed their child. This is cancer's only purpose-to take over.

I did want to include a post from a cyber friend-Mimi. You may remember me mentioning her son Julian here several times. Julian lost his battle with his cancer earlier this year, January 19th to be exact. I have always loved Mimi's entries, through good times and bad for their honesty and frankness. Julian died of medulloblastoma. It came back only 6 months after he finished his chemo. With her approval, here is her last entry:

Today is Easter. Today is just another day missing Julian.
Before Julian died and I would read cps or cbs of kids that had passed I always thought, seeing parents mentioning dates and how hard it was on certain days, like xmas, bdays, holidays , that i didn’t think dates made a difference. Your child is gone and here without them is hell no matter what day it is... Oh boy was I wrong... Today is Easter, is Julian "more gone" than yesterday? NO... So why was it so dang hard? Was it dressing the kids up for church and only having to dress 3? Was it the Easter egg hunt that was going to take place without him? Was it because last year he was there ,walking those grounds, sitting in kids church, waiting patiently to go hunting the eggs, finally getting to hunt and finding the golden egg ? Was it because it was his last Easter day ,here on earth with us? Was it because I didn't go last year for his last Easter with us , I missed it, i missed him finding that golden egg and seeing how excited he was? Or is it just because today is just another day, here on earth without my baby? Just another day... You would think I would rejoice knowing that I am one day closer of being with him again. Nah, I think of what today could have been and wasn't because of this horror called cancer which only goal is to kill our children...
This was my son, last year :
(picture here that wouldn't copy over)

We went to visit his gravesite...This is my son this year...
(picture of Julian's gravestone)

The kids put easter eggs in a little bowl, and tried to clean up his stone some... Now , that breaks my heart , THAT makes me mad...

Anyways...We made it home ok... Kids were mainly good. I will be working on a SanAntonio/SeaWorld movie later...

I wanted to explain something to non BT connoisseurs. First I don’t want to upset anyone and i will not be saying that one cancer is better than others, I just want to explain a little about brain tumors...
When a brain tumor invades your brain, all kinds of things happen, depending on where it is located... Balance issues, nausea, vision, hearing, swallowing, talking, use of any organ commanded by the brain,...etc... If a BT patient is lucky enough to have a shot at treatment, because it is not always the case (DIPG, you have 6 months to a year to live period), dozens of issues can happen. First hopefully it is caught in time so you don’t have permanent damage to anything. Then surgery, either they take all the tumor out or they don’t. Either they come out of the surgery ok or they come out with problems like post fossa syndrome (symptoms go from mild speech issues to total mutism, paralysis etc...if you want to know more check out Quinnster's page Tidmore , read back from beginning), now those problems might subside in a couple of days or stick around for months and might not ever totally go away(by the way, I read that 1 in 4 kids will come out of surgery with PFS at various degree).

Next step ,after checking the spinal fluid for cancer cells (which reduces your chances even more if it is positive)radiations... We are talking about full brain and spine rads with boost to tumor bed.
You do understand what that means?? we are radiating a brain (in jus case) that is still developing , along with the bad it screws up the good... our children wont ever be engineers and more than likely will live with us forever, they usually don’t get married and have children, basically their social life is greatly affected . (all of them?? I don’t know, but seems to be a common thing…) .
Then there is chemo…Of course we all know what chemo does, can bring on another cancer such as blood cancer(or leukemia) , can make you sterile, can make you deaf or close to it , and a whole lot more…
As if all this is not enough, Bt patients, especially medullo kids have issues such as nausea and poor eating , so a lot of them at one point end up with feeding tubes. They also hate noise , bright lights and crowds. ( again these are common observation , nothing medically proven on a piece of paper) .

Then when all the treatment options are exhausted and nothing worked, death by torture is inevitable. There is no getting sick and falling asleep and never waking up … If you have been following Julian you know all that …

Why again am I telling all this, at the risk of scaring to death parents of BTs or Medullo patients? Because , need you to realize that after rads, after chemo, after transplant , a BT kid is never ever out of the woods , BT patients don’t really have a “normal” life again , BT patients are fighters , and will be for a while even after “cancer” is gone . I want you to understand that when you get involved with a BT patient , it is a forever thing . And I am sorry if I hurt someone using this example, I am not by any mean saying that Leukemia is a walk in the park( I thought Ju’s tumor was a walk in the park!!!) (pediatric cancer IS pediatric cancer) , but once chemo has worked , BMT has worked, blood is cleaned and you are in remission then cured , you don’t have to worry about all the issues that comes with the territory of brain rads and brain tumor . Again I don’t want to offend anyone , I just want people to realize that brain cancer goes way beyond treatment and that once you don’t show any evidence of disease , the battle is still on…

So when the oncologist comes and tells you that your 4 year old son has brain cancer , and tells you about what to expect for his near and far future your world comes crumbling down… And unfortunately it goes much farther than “just” not ever having kids… So then either you think selfishly or you don’t…you want your child to live at all cost or you want whats best for him …What IS best for him ?
This is where I am afraid I failed Ju . I wanted the best for him , I wanted it to all go away. I wanted him to be as perfect as he had always been . The thought of him going thru all these treatments to kill cancer but that would diminish his being and change who he was and make him so sick was driving me insane. I wondered over and over if it would be worth it. Did I want my child to live at the price of not being quite the Julian I knew and loved ,did I want him to live no matter what and how much hell he had to go thru? Maybe I didn’t want him to live bad enough if it meant he would have to suffer for it… What right did I have to think I could make that choice for him? God hears even our thoughts… Again, it goes back to not believing enough that Ju would be ok. Not believing that God would see us thru and that HE would be enough…

But my main goal tonight was to open your eyes to what BTs are like and remind you to not walk away if you are involved with BT patients because they WILL need your support for life!!!!

Good night…

Sometimes I can't put things like this into words. Mimi did it so very well, thank you. So tonight, and every night, I continue to pray for Hannah and for all of the cancer children, known and unknown. I'll make another post about some other things happening with Cans for Cancer, our clinic visit this week and about some of our close cancer friends soon. They really need our help.

xoxo Kim

Sunday, March 23, 2008

Happy Easter everyone! As I sat in church today I listened to the priest speak of the meaning of Faith-believing that God can do what sometimes seems impossible. I thought about all that Hannah has been through this last year. Last year at this time, we were still in Boston, in the middle of our radiation treatments. My mom and dad brought Colby up for the weekend, and we all went to church, then to lunch (praying Hannah would eat something.) I recall that she ate one piece of bread and none of her favorite ravioli. That's it. I sat in church with Hannah and the family and cried. I was mad at God, and upset. Wondering how he could let this happen to Hannah. Was it because of something I had done, or not done? Was this punishment?

Well, of course it wasn't punishment. It takes time to work through all of that. I believe God doesn't indivually single out children to get sick. But God can help you make it through. We're in a better place now, Hannah is through the worst of it, and is recovering nicely. So today as I sat in church I thought of our other little warriors who aren't through the worst of it yet. I thought of Coleman from Iowa, and Jacob, and Alec and Nicholas. And so many many more. All our little warriors fighting as hard as they can. As we celebrate Jesus's resurrection, let us stop to pray for those needing a helping hand from Him right now.

Hannah didn't feel that well this morning. Last week they changed her anti-nausea medicine to generic. We immediately began having problems with morning nausea again, no eating, etc. We got it changed back to the brand name, and we have seen improvement, but we're not back to where she was before the change. That didn't stop the traditional egg hunt this morning. By now, we don't have to hide the fact that mom and dad hide the eggs. They still have fun finding them though, including their easter baskets. Then we went to celebrate with Aunt Kathleen and Bill today. Hannah made a special bunny cake, she insisted on making it and decorating it (almost) all by herself. When it came time for the cake, she served it also. She is quite the baker. Maybe someday all of you will be eating at Hannah's Bakery!
Here are a few pictures of Hannah with her creation. I don't know how the scarf became her indian headdress, but those of you that know Hannah know it's possible.

I hope you all had a relaxing and blessed Easter!

xoxo Kim

Friday, March 21, 2008

Boy that was a pretty sorry sounding post last night! Today was much better for Hannah the earring queen. After crying as she was drifting off to sleep last night, she slept soundly without any earring problems. She woke this morning trying to convince me that she had to sleep perfectly still without anything touching her ears. But I knew better, since she slept upstairs with us! Her ears don't hurt anymore like they did yesterday and after she figured that out, she has decided that she will keep the earrings. She will turn them periodically, but she won't clean them and changing her shirts is still an issue. Last night I thought it was about a 50/50 chance of her deciding she would take them out. She asked me today how long it would be before she could have them pierced again if she took them out now. I told her at least 2 years. She seems happy with them now, and I think she is now enjoying already receiving earrings....grandma! Here are a few pictures from tonight, her happy earring faces!

An update for Hannah's Cans for Cancer: we have been looking all over town for the Nintendo Wii's, but none are to be found right now. The search cotinues. Hannah wanted to buy a few new craft items for clinic, so today she bought lots of fun foam which we will take with us next week. She said that while she was in the hospital on Med 4, she would have liked to do these projects, so that's what she bought. She also delivered some toys to Dr. Mercier-her pediatrician's office today. He has been so supportive to Hannah and our family and the last time we were there a few weeks ago, Hannah decided she would like to give a few new toys to the kids that "are sick and have to come to the doctor like me." Her Cans for Cancer program gives her the opportunity to give back to other kids, and she really enjoys it. Thank you to all of you for being a part of that and helping Hannah help other children.

xoxo Kim

Thursday, March 20, 2008

Today was a very monumental day at our house-Hannah had her ears pierced. This may not seem like such a big event, but it is so significant for us. In our house, the deal has always been that you get your ears pierced when you are eight years old (or older, if you choose). Colby had her ears pierced on her 8th birthday. Hannah absolutely could not wait to follow in those footsteps. She has been asking me since she turned eight-last June 6th-if she could get her ears pierced. Of course she couldn't while she was on chemo and so sick. She was neutropenic for so long, it was out of the question. After her last MRI, we checked with the doctor and although there was still a very slight risk, they gave their ok for the ear piercing. The risk is that if she gets an infection that prompts a fever, this would require a hospital stay for antibiotics because of her port she still has. The risk is small, and the desire was large for Hannah, so we went ahead with it.

So the day started with much anticipation of the event. Everything was still good when we got to the store and picked out the earrings. But then Hannah was having second thoughts-she was concerned that it would hurt. This was coming from a little girl who has been through 2 brain surgeries, agonizing physical therapy, full body radiation, and horrible chemotherapy with all of it's side effects. She was worried about having her ears pierced, even though it was something she desperately wanted to do. We stopped and I asked her if she really wanted to do this, reminding her that she could wait until later, it was ok. But she wanted to forge ahead. She cried, and then cried some more. She said it hurt worse than having her port accessed! Colby was awesome, holding her hands and comforting her. She calmed a bit as it was over ad she started perusing the store for fun earrings.

Everything seemed ok, until later when Hannah realized that she couldn't take the earrings out for swimming or sleeping. She is very concerned about touching them or accidentally hitting them. Tonight as she was going to bed, she got very upset. She did not want to sleep with the earrings in, and said to me "should I wait until later to get my ears pierced?" I told her she could take them out if she wanted to, but she opted to try it tonight and see how it went. She cried herself to sleep.

So on a day that started out with such anticipation and happiness, it ends with a bittersweet closing. Another thing cancer has taken from Hannah.

I'll update again tomorrow to let you know how it's going and whether those ears are still pierced! Here are some pictures of the event unfolding. She gave a valiant smile at the end!

xoxo Kim

Sunday, March 16, 2008

Happy Birthday Colby! Colby turned 11 on Friday the 14th, and we tried to fit in her celebration between early band at 7:30am, school, gymnastics 4:30-6:00pm and altar server last practice 7:30pm. Colby LOVED her horseshoe cake that Hannah and I made for her last night. Hannah is happiest when baking or swimming. That girl would bake while she swims if that was possible!

I would love to post pictures today, but I'm using Hannah's computer right now instead of mine so I don't have access to my photos. Why? Well I have no power cord again, due to our wonderful little Tod. This afternoon wonderful Tod chewed his 2nd Mac power cord. And, it was plugged in! It didn't seem to stop him, the cord this time was in about 20 pieces. Just love that dog.

Thanks for all of your Make A Wish well wishes. I wanted to share a few other comments from parents, this seems to be a big point of discussion lately on the cancer boards that I belong to. Here are a few thoughts from others:

"A few months later, in clinic, our neuro-onc looked me in the eye and said, "why haven't you called MAW yet?"...I told her that MAW was for really sick kids. Our poor, long suffering doctor drained my river of Denial pretty gently...and I made the call. Ok, I wimped out and e-mailed, but I contacted them...I cried while I did it."

"It's hard. MAW somehow cracks that final barricade we have as parents, that thin line of "at least my child isn't so sick that they can have a wish"...and at the same time it helps heal the wounds this illness inflicts on the family and especially our brain tumor kid."

My husband and I were talking in Matt's room late at night and he broke down and forcefully said, "I don't use the make a wish foundation, I donate to the make a wish foundation!" I think the thought of Matt being a wish kid is just too much for him to handle -that would be admitting he's really sick. It's had to pretend your 4th grader is just like every other 4th grader if they are taking a wish trip.

"It took me a long time to believe inside of myself that we weren't different from everyone else with a brain tumor kid, that we didn't belong there, that someone had made a big mistake and would soon call up to correct it."

That pretty much sums it up, I thought the comments were very telling. Hope everyone had a good weekend and when I load the pictures onto the other computer I'll post some. We had a very busy weekend here!

UPDATE*** Here they are:
Presents from Grandma and Grandpa
cutting the horseshoe cake

love the blanket from cousin Sydney

with their babies

xo Kim

Thursday, March 13, 2008

Firstly, THANK YOU to everyone who signed the blog, it's nice to know once and awhile who is stopping by. Speaking of that, I have added something new to the blog. On the left hand side, if you would like to get an email anytime this blog is updated, just enter your email in the box. Follow along, you will be sent an email that you have to confirm before you are actually signed up, but from then on, every time I update the blog, you will be sent an email letting you know. I thought this would be pretty handy, so that you will be notified when it's updated, rather than having to check. Now-if you check here almost every day anyway (MOM and DAD), probably best not to sign up so that you don't get a bunch of emails everyday. I'm not absolutely sure it's working properly yet. I tested it, but it took 24 hours for me to get an email after I updated the blog. That seems like a long time. I'm still tweaking it, but go ahead and sign up if you are interested.


Hannah has been approved for a wish from the Make A Wish Foundation! This has actually been in the works for quite some time. I'll give you a quick history. When we first started at Schneider Children's Hospital, Hannah's social worker submitted her to Make A Wish (MAW). I wasn't aware of this. When MAW called and left a message at our house, I didn't call them back. I thought MAW was for kids with terminal diseases, a last dying wish for the child. I didn't want that to be us. They called again, and when I actually talked to them, they explained that MAW works with any child with a life threatening illness, regardless of the prognosis for the child. This made me feel a little bit better, but not much. That meant Hannah was still "the child with the life threatening illness." Talk about humbling. Anyway, getting off the subject.

So, Hannah started to think about what she would like for her wish. At one point she started a list that included a horse, a puppy, a hamster, a trip, a pool, a barn, and the front runner-a sleepover room. This sleepover room was her number one choice for quite a while, but involved us adding onto the house, which is something we would have had to do ourselves, then MAW would come in and set up the room for her. This would be a room where she could have friends over for sleepovers, and playtime, and FUN! Something she didn't have much of in the last year. It just wasn't possible right now, so Hannah thought and thought about it. She decided that she would like a pool/hot tub so that she could use the pool in the summer and the hot tub in the winter. She loves to swim!

We met with MAW people, and they have approved Hannah's request for a pool! Everyone at MAW is so friendly and helpful. They really go out of their way to make this special for the MAW child. They put us in touch this week with the pool company that does all of the MAW pools in our area. They only use one specific pool, so the pool with attached hot tub is not possible, but maybe sometime in the future we can get a hot tub so that she can enjoy it in the cold weather also. Hannah will have some choices in size and liner color. We hope to meet with the pool company this weekend, or next week and get things moving. They said we should be using our pool by May!

Hannah is so excited. It's great to have this to look forward to and we are so thankful to MAW for helping a dream come true for Hannah. I am learning going through this process that MAW is just as much about giving control to the child as it is about the wish itself. There is so much in her life that Hannah can't control. MAW makes her feel like she can control this totally. Imagine your child so sick from chemo or surgery or radiation, then MAW comes in to ask "if you could have anything, what would it be? We can make it happen for you. We can give you any wish you want." It just brightens the moment, gives the children something to look forward to, and it's all up to THEM. This is HER wish, and what SHE wants and MAW Foundation puts her in the drivers seat. We want to try and give her as much control as possible in the whole process, it helps build her self confidence again. We'll keep you updated on the progress!

xo Kim

Tuesday, March 11, 2008

Have you ever noticed how medical personnel use terms and abbreviations all the time like a secret code? Here are some we hear all the time in our world, and these are only the tip of the iceberg: NPO-latin abbreviation for "nothing by mouth", EFS-event free survival (which means in the tumor world that no major medical issues arise, including a recurrence of the tumor), BID-twice a day, LP-lumbar puncture, also known as a spinal tap, CSF-cerebrospinal fluid, CRP-C-reactive protein, DX-diagnosis, Hgb-Hemoglobin, RBC/WBC-Red blood cells, white blood cells, SQ-subcutaneous, and one of our new favorites-NED-no evidence of disease, which is the word on Hannah's MRI (another abbreviation) today!!!!! YEAH! It doesn't get any better than that-NO EVIDENCE OF DISEASE!

We got the call this afternoon, what a relief. I still won't feel completely satisfied until we get the written report from the radiologist, because often they note other things. We have been surprised by a written report before, after having read it, but not being told all of the particulars beforehand. Here are a few photos of Hannah as she braved the MRI machine again.

We only went to clinic to day for Hannah to be accessed, no visit with the doctor. We were happy to see our friend Kaitlyn and her mom Carolyn there, I was hoping since it was a Tuesday that we would see them. Here is a picture of Hannah and adorable Kaitlyn-look at all that beautiful hair she has! Kaitlyn has ALL-Leukemia, and is still in the midst of chemotherapy. God bless her, she is a sweet little girl.

Hannah was great today being accessed at clinic. Today's bribe was a nintendo game that she has been wanting, so she can play directly with Colby. She was incredible. It is so much less stressful (for me at least, and I think for her too) when she is not hysterical. When nurse Donna asked her today to stick out her chest because she couldn't get the needle in, Hannah stuck it right out! I asked her if I could take her picture during the accessing, but she said NO WAY MOM! She's not close to that yet. But, it's ok, I would expect her to say anything else.

The MRI today was much quicker because they only did the brain. Next time-in June-they will do the full brain and spine. For the first time, Hannah said she felt nauseous after they injected the dye today. They have to use contrast dye during the MRI so that any tumor spots can be highlighted in contrast to other normal tissue. It makes them easier to see. She didn't get sick, but she laid down for a bit after we left the MRI and got to the car. She popped right up when we got to the mall and headed for Build a Bear. Here is Hannah with her new chick "Polly." What a great day today. They drew some labs today that I asked them to while Hannah was accessed. This post is already long enough, so I won't go into detail now, but we should have the results back next week. We go back to clinic for her next level check at the end of March. Freedom!!

Thanks for checking in on us. If you visited today, please drop us a note in Hannah's guestbook, we would love to know you've been here!

xoxo Kim

Sunday, March 9, 2008

Busy busy busy, Hannah seems to always keep busy now. She is back to her full time schedule, and while things that she does may be a bit different now, she is still staying busy. I am finding that we have to balance her activities to combine the fun with the therapeutic, rather than have her only in physical therapy. Doing as much as she can in a regular setting will give her the most benefit rather than going to a physical therapist (although she loved Scott) once or twice a week. Right now, her schedule consists of:
Every other Thursday-girl scouts
Saturday-horseback riding

We are trying to incorporate daily stretching since she is very stiff due to limited physical activity for over a year! I would also like to find a dance class Hannah would enjoy and try to fit that in her schedule. Dance is very good for balance and coordination. Hannah really doesn't like ballet that much, so possibly a tap or jazz class. Her time is limited, but the benefits would be so great for her! Besides these after school activities, she is going to school full time, and has nightly homework.

Last week we went to gymnastics and Bonnie set up an obstacle course just for Hannah that I did with her. It was very low impact, but fun for her. We focused on strength building, coordination and balance. Every few times through I would change it a bit with new challenges and she seemed to like that. It's one on one with me, so I don't want her to get too bored! She was tired at the end of her class which lasted about 45 minutes. Saturday she got to horseback ride again and just loves it. It is so good for her, even though I hold my breath the entire time. She is getting stronger and less wobbly on the horse, but if that 1500 pound horse wanted her off it's back, she'd be on the ground in no time. It's a safe learning environment, but those things happen all the time. We also signed her up for softball this spring, and we'll see how that goes. Dave plans on being her one-on-one coach and will be able to be out that and help her during practice. We'll just play it by ear. She really wanted to signup and we didn't want to tell her she couldn't do it.

Saturday after Colby's final lacrosse game, we headed to the mall for Colby's birthday celebration. Colby, Hannah and 3 other friends hit the mall on a mission--FUN!! We had make overs, fun at the Apple computer store with all the new gadgets, dinner and shopped till we dropped! Those girls wore me out! Just when I thought they were asleep in the car on the way home at 10pm, a good song came on the radio and they were belting it out at the top of their lungs. It kept me awake and singing all the way home. Colby's birthday is Friday, March 14th, and this year she won't have to celebrate in the hospital with us. Last year Hannah and I were still in Boston, so Colby took the day off school and came up with Dave to celebrate. I remember that Hannah and I went to Whole Foods to get her a cake, and Hannah didn't even try it. She wasn't eating much at the time.

Last but not least, this Tuesday is Hannah's 3 month post chemo MRI. It's only a brain MRI, since now they rotate brain with brain/full spine every other time. That means Hannah has to be accessed again for the contrast dye. That means another bribe, and I think she is going with the $20. After the MRI we are headed to Build A Bear to make a bear that she got for her last accessing. That will be good for me, since I will waiting for the MRI phone call sometime later that day.

xoxo Kim
having trouble loading pictures right now, so I will add them later!

Wednesday, March 5, 2008

I had a meeting at the school today regarding Hannah's school performance and progress. We meet with the school once every 3 months to make any modifications to her school plan she has in place. I am so happy to report that the teachers and aides all say she is doing wonderfully! She is working at or above her grade level and she has maintained or improved since our last update in all areas of her studies at school. She is also really back in the groove of the school day. Hannah has a full time aide with her at all times during the day. Mrs. W (as Hannah calls her) is the best. There couldn't be a better fit for Hannah than Natalie. She is such an advocate for Hannah, and such a great support for her. We all love her! We have seen Hannah begin to rely on Natalie less and less as time goes by and she gets used to the normal routine again. The teachers all reported today that Hannah is just a different kid now, since the end of chemo and return to regular school again. I couldn't agree more!

Thank you to all of you who left a message for our friend Alec (see my last entry.) He is scheduled for another surgery tomorrow, to help stop his hydrocephalus. Keep up the prayers, he still needs our help and support.

xoxo Kim

Monday, March 3, 2008

Not a big update tonight, but I did want to ask for your prayers for our dear friend Alec.

We met Alec and his family at Schneiders hospital, I have mentioned him here before. I knew right away he had medulloblastoma, and even the same surgeon. It's like seeing a Monet and knowing right away whom the artist is. I could tell by the scar! Anyway, Alec has been through some very rough times lately, only a couple months after his stem cell transplant and some changes on his MRI. All docs have thought it was scar tissue, then tumor, now unsure. He started with severe headaches last week and was rushed to the hospital. Surgery was supposed to happen on Friday, but was delayed due to a high fever. He did have the surgery today, and while there, the doctor was to take a biopsy of the spot. You may have seen Christine's comment (another Schneiders cancer friend) on Hannah's blog today, we're all hoping and praying for NO TUMOR.

If you would like to leave a message on Alec's blog, I know the family would appreciate your thoughts and prayers. Let them know you are friends of Hannah's, I'm sure Alec would get a kick out of that. There is a picture of Alec from Saturday now posted on his blog too! Here is his address: or you can click HERE which should take you right to his site.

Hannah is doing well, I will post some pictures tomorrow from her weekend adventures.

xoxo Kim