Hannah's Test Site

Tomorrow should prove to be a very interesting day. We have to go into clinic to have Hannah's early (7am) blood drawn to check her cortisol level. I really can't even make a prediction on whether I think it has come back up to normal levels. Hannah sleeps every day until 9:30 or 10 in the morning, so going by that is not a good sign. There is a lot more to it than that, so I'm hopeful that her adrenals have started functioning normally again. She is also due for her anti-pneumonia drug. There are two ways to get this drug, via IV or pill (two different drugs actually, but they both do the same thing). Hannah has always received it via IV since she was already accessed for chemo. Tomorrow I'm going to see if they will switch her to pills, so she won't have to endure the drug via IV, since it is especially nauseating. This will not eliminate the need, however, for her to be accessed and have her blood drawn.

For about an hour before she went to bed tonight she was VERY upset about being accessed. She repeated over and over that she "can't go and won't go" to clinic. I think it's worse since she has not been accessed in a while, then it was when it was more regular and she was expecting it.

I also wanted to give everyone an update on Hannah's Cans for Cancer campaign. Tonight I made a spreadsheet to keep track of all donations received and cans recycled, as well as all of our donations out to other organizations helping kids with cancer. To date, since we started Cans for Cancer in August of 2007, Hannah has raised$1,023.15! That money has come from bake sales, donations, can recycling, and help from so many wonderful people. That is a fantastic start to this project. Hannah and I have already talked about expanding the project, so watch for some exciting changes to come.

xoxo Kim

We left bright and early and got to clinic today by 7:15am, not even the nurses were there yet, so I guess that was a bit early. Hannah did get her blood drawn before 8am. We should have the results of her cortisol level tomorrow or the next day. I also asked for several other tests which we have run before to check various other things like her copper level (linked to blood vessel growth which can fuel new tumor growth), Vitamin D, inflammation level, and a few other things. All I will say about accessing today was that it was bad. However, right before the nurse put the needle in, Hannah got very quiet and still, knowing that it was best to be still. Last night she told me that it doesn't hurt when the needle goes in, she doesn't like it when she can feel the needle touch the back of her port. They have to do this to ensure it's all the way and can draw blood and administer the meds.

Unfortunately Hannah’s counts were down again. It’s not as bad as it could have been her red counts seem stable, only going down by a point or two, but her neutrophil count went down to 568, from over 700 (white cells). We don’t know why, her doctor is somewhat perplexed that she is not recovering faster. He is not alarmed since she is not crashing down, but he would normally expect recovery by this time. He decided not to put her on shots though, since the other portion of her white cells are holding and the count will hopefully start to come up by next week. That means no school this week, my prediction is she won't be there the rest of the month, but we'll have to see. We have to be a bit more diligent now also about germs.

Hannah's weight went down again this week too, not too much down to 20.8 kilos (about 46 pounds). The doctor did tell her today that if she didn’t eat well, and her weight kept going down, he was going to have to use the NG tube for feeding. She immediately started crying, but I think that is part of his strategy so that she’ll really try and eat. I know she’s trying, I know it’s so tough for her.

The anti-pneumonia drug was given today also via IV, and really made her feel badly before we left. She slept all the way home, and more when we got home, until 3 this afternoon (from 10:30am). She went to bed again at 9 tonight, so she needs her sleep. I told her tomorrow is homework day for us!!

Thanks for checking in on us,

xoxo Kim

I guess I should have waited until the night was over until I posted about Hannah sleeping in her own room by herself! At about 12:30am I heard a little peep on the non-baby baby monitor and came rushing down to see if it was Hannah just talking in her sleep. No-she was awake, her feet were hot inside her pj's and it woke her up. She wanted to come upstairs and sleep with us. I told her she couldn't because Dave has a cold, so out came the trundle and in came mom. Off came the pj's and we were sleeping again. We'll try again but not tonight because she said she's not ready. I'm working on it though.

Not a good eating day, although her calorie count was about 900, which is better than a few other days this week. It's a good thing that heavy cream, ice cream and butter have a lot of calories otherwise she might be on a feeding tube by now. She told me yesterday she just can't eat, it's the stupid cancer and it's not her fault she got the cancer. Now that's a tear jerker.

Look how much Tod has grown since his first sweater!

xoxo Kim

Big happenings at our house tonight! Hannah is sleeping alone in her bedroom and wants to sleep by herself all night long! Now that is BIG. It started last night when I had the trundle bed put away to vacuum. This is where I sleep, with the trundle right next to her bed, and have been since we came home from Boston. While in Boston I slept in a hospital bed right next to hers (and sometimes with her in her bed) and before that in a chair next to her bed. If I wasn't there, then Dave was. Since January 31, 2007. So for Hannah to want to sleep by herself, is such a break through for her.

We have mentioned to Hannah that after chemo was finished, she would start sleeping by herself again. Dave mentioned it to her recently, and she was dead set against it. I was totally surprised when she suggested yesterday that she sleep alone. She said she liked the look of her room without the trundle. She was a bit hesitant (and I was too, but I was trying not to let on.) So I suggested we get a monitor for her room so that if she needed me during the night, I could hear her (our room is upstairs and Colby and Hannah's rooms are downstairs.) So today we went off to get her a monitor (ie baby monitor). When we got there and went to the infant section and Hannah saw the picture of the baby on the package, she said "I don't want a baby monitor." I knew that was coming. We found one without a picture of a baby on it, just a "monitor" so she was satisfied with that. It's in her room, and Colby has now decided that she wants one too because she can broadcast everything on it. She gave us an example tonight! Once I told her that I would be able to hear everything she changed her mind pretty quickly.

Here is Hannah asleep and surrounded by all of her favorite things-her Tod, her many animals, her beloved quilts (some you can see and some you can not, but we have some very beautiful and hand made blankets and quilts), her favorite Hannah pillow, her Grandma's pillow (made by Grandma many years ago) and of course her two sleeping blankets. Now if we only had lambie (who was lost right after surgery at the first hospital, but never found) all would be complete.

So, I'm about to go upstairs to bed in my own bed for nearly the first time in a year. I think Hannah is handling this transition fine, and it's me that is a bit scared. Hopefully I'll get some sleep tonight! Moving on bit by bit, it feels pretty good.

xoxo Kim

First post of the new year! I just finished reading some of the websites I read daily, some of the other kids/families I have "met". I had to share from one of them, a little boy, Coleman, age 4 also with medulloblastoma. He recently has had a recurrence of his cancer. Coleman has a twin brother, Caden. Boy, do they make me laugh. They have a wonderful family and live in Iowa. His mom often posts videos of the boys. Wow, are they energetic! And so funny too! She says they are lately on a Barack Obama kick. Since they live in Iowa, they are being bombarded right now with tv commercials. Here are a couple excerpts from her last few posts on his site:

"Coleman is still doing political ads every few minutes. Yesterday morning he whispered in my ear, “mommy? Det up. It’s time ta Det up now!” I still had my eyes closed and told him “uhhhuh, Coleman, just a minute” He leaned back down and whispered, “This is Ba-wock Obama ann I ‘impwoove’ this message!” What a good way to start the day- with me giggling my head off! " and also this: "They have two new sayings since Christmas. The first is “Barack Obama” which usually comes out… ‘a rock a bomb a’ and they repeat it, rhyme it, {a shock-a-tomma} etc. I guess they like the rhythm of it. Just when it dies down, another commercial is in the background and it starts all over again. Coleman wants to know WHY the guy is ALWAYS on Tv anyway? "

His website is www.carepages.com, site name is ColemanScott in case you would like to read for yourself. I just wrote to the Obama campaign to request that he visit this family, we'll see if I get a response. The family is tackling this recurrence head on, and I pray that Coleman is one of the ones that beats the odds. If anyone can do it, he can.

I also wanted to share with you a very special gift we received for Christmas this year. My 2nd cousin (???) Anna and her family in St. Louis sent us this amazing lucky horseshoe. In part, Anna writes "horseshoes represent good luck. I think this one represents the love that many friends and family have for you. It also holds your courage and strength that each of you have displayed. It represents the smiles that you bring to many faces from your can donations, games and fun stuff you bring to the hospitals, the yummy cookies you bake and share with others. Now close your eyes and pictures a horseshoe." And WHAT a horseshoe is it! It is a shoe from one of the Budweiser Clydesdales in St. Louis, where Anna and her family live. I have not seen Anna in several years, since she wasn't able to come to the family reunion 2 summers ago. What a thoughtful gift, we were just amazed!! Check out the pictures.
We will find a very special place for it. xoxo Kim

Hannah's numbers today from clinic have dropped again, including her weight. None of the counts are in the extremely critical range, so no transfusions which was great to hear. She had another shot today to help boost her ANC, but thank goodness no daily shots. We think she may be close to her nadar (low point), hopefully she won't go too much lower.

Unfortunately this means she won't be back at school this week with everyone else. The doctor thinks it's just "asking for trouble." We go back to clinic again on Monday, so the earliest she can attend school is next Tuesday (but I'm not that hopeful for that date.) Next week we have to arrive at clinic by 7:15am to have her early morning blood drawn to check her cortisol levels. This will tell us if her adrenals are functioning properly again, since she has been off the appetite stimulant. She will also get her monthly dose of Pantamidine-the anti pneumonia drug. The drug takes about an hour to infuse, and it's not a great one. It causes a lot of nausea by lowering your blood sugar, so we'll try to get something in her stomach before she starts it. That should be challenging.

Hannah lost nearly another pound since last week, she's down to 21 kilos (46.2 pounds). She's still ok, but we need to try and stabilize her so that she stops losing. I can certainly tell she is no longer on the appetite stimulant. It's very difficult to get her to eat anything. She says she is never hungry, and only eats so that she doesn't have to go into the hospital. This is compounded by her nausea that we are trying to keep under control. This new drug seems to be working very well, as long as we stay on track with taking it. She waited this morning over an hour before taking the medicine after she got up, and by that time she was feeling badly. It's hard to stop it once it starts, so we have to try and stay ahead of it.

She really wanted to stay up and watch the ball drop, but at 9:30pm, I took her kicking and crying in to bed. I told her we would watch it tomorrow, when it will be on tv again. It's a bit after 11pm and Colby is still hanging in there. Dave and the dogs are snoozing too for the time being. I'll leave you with a few pictures from Christmas.
Happy New Year everyone!!xoxo Kim

We've had a pretty busy week, as I'm sure the rest of you have also. Colby and Hannah really enjoyed Christmas, especially with our secret santa, a scavenger hunt from santa on Christmas day, and having Grandma and Grandpa and Sydney here too. Hannah asked me when package #13 was coming (on Christmas Day), so I had to explain to her that it was the "12 days before Christmas." We never did find out the identity of our friendly secret santa, although we have a few ideas on whom it may be.

Hannah has not felt well this week. I guess I was hoping for some drastic and quick change after chemo, but I realize it is going to be a very long road still ahead until she feels better. She is complaining constantly of stomach pain/nausea. The doctor prescribed a new anti-nausea med this past Monday. He said it's not uncommon to see medicine begin to lose it's effectiveness after being on it for so long. Hannah has been on Zofran for 10 months, and it doesn't seem to work as well for her now. It wears off quicker and isn't as effective over all. After days of contacting the insurance company, we finally got a special approval for this new medicine. At first they only wanted to approve 6 pills a month (it's a daily pill). I guess Hannah is only supposed to feel sick 6 days out of the month. They did finally approve for what the doctor wrote for, which was 30 pills for months. However, I did find out that approval means she can get the medicine but they pay nothing towards it. So, why did we even need their approval? I wouldn't mind as much if it was a couple hundred dollars a refill, but it's a couple thousand. We're trying it for a month to see if it helps. If it does, then it will be worth it. Hopefully our new insurance will cover it, and that will begin in the next couple of months or so (if we can get approved for insurance, that is.)

So in the meantime, I try not to dwell to much on her eating. She is completely off the appetite stimulant, which is good, but I don't know if her dramatic decrease in eating is a result of the latest chemo or the removal of the appetite stimulant or both. I started tracking her calories today, and she ate just over 700 calories for the whole day. She needs much more than that, and even double that would be good for her. She lost nearly a pound and a half last week, so I don't want that trend to continue, but I also can't force her. I am trying all the tricks right now, I snuck in some heavy cream into her chocolate milk today, and did get her to drink a whole cup of that this morning. She just doesn't feel like eating, doesn't want to eat and has absolutely no interest in food. Even the old favorites are being rejected now.

We go back to clinic on Monday, so we can just hope that her counts have not decreased again, and her weight has not either.

I would like to say thank you to all of our friends and family that have been there and supported us this entire year. It will be a year this January that Hannah was diagnosed with brain cancer and all of our lives changed dramatically and permanently. We could not have made it with all of your love and support.

I'll post some new pictures in the next few days.

xoxo Kim

At clinic today we received Christmas present #3, no transfusions! I was so hoping for that, but was a bit nervous considering how the day started out. I could tell by the finger stick that Hannah's platelets were low. Then, at weigh in, Hannah lost 1.5 pounds since last week. At that point I thought "this is not going well, I can't imagine what the counts will bring." We were happy to hear though that Hannah's counts are not terribly low. They are not so great, but still ok. Here is what she had for today:

WBC white cells- 1.5 (should be 5-13)
ANC- 876 (should be 1500-8000, under 500 is severely neutropenic)
RBC red cells- 3.21 (should be 3.9-5.3)
HgB hemoglobin-9.86 (should be 11.5-16, transfuse RBC under 8)
Platelets-86 (should be 140-400, transfuse under 20)

Her doctor anticipates that she may go a bit lower, but not much more. Usually they transfuse blood if your hemoglobin goes below 8, but they plan to let her go a bit lower to 7.5 or 7 before they would transfuse, since she has no chemo left. They can't let her platelets go less than 20, but hopefully she won't. She did have to get ONE shot today for her low ANC, but at least no daily shots.

We were advised to go to church, but make a quick exit at the end so that we weren't in close (hugging) contact with many people. That is what we did, and we were happy to be there. Hannah was very tired throughout the mass and spent most of the time resting on my lap with her coat covering her.

I did speak to the doctor today about Hannah's weight loss and ongoing nausea/stomach pain. He said the nausea is most likely a two part issue-from the chemo and the surgery (in February!!!) Because of the location of the surgery, and the fact that her body has never had time to simply recover (going from surgery to radiation to ongoing chemo), she may still have nausea from that. The meds we have her on now do ok, but have a short life span, so when they begin to wear off, she starts to feel badly again. He switched her medication, so we'll be starting something new this week that is only a once a day pill. I hope that helps so she starts to eat and feel better. He did talk quite a bit to Hannah about her taste and eating. He told her that two of the chemo drugs she received were in the platinum family, which is why many foods may have a metallic taste to them now. It's like eating your jewelry with an after taste. Hannah doesn't really complain so much of a metallic taste, as she does that foods just don't taste at all, or don't taste good to her. It takes several months for this to wear off. He told her to try new foods that she may not have liked before, because her taste has changed now. We'll see how that works out!

We go back to clinic again on Monday, this time on New Year's Eve. Hannah wants the whole crew (Colby, Sydney, Grandma and me) to go with her. She said Grandpa can stay home and keep dad company. Must be a girl thing.

The girls opened their surprise #11 this morning-11 pipers piping, with one pipe for us. I just picked up #12 from downstairs and as far as I can tell, the identity is not revealed, but the girls will open it up in the morning. I know they are looking forward to it as much as Santa coming.

We hope everyone has a very Merry Christmas and a wonderful and healthy 2008. We will continue to pray for all of our cancer friends: Alec, Jacob, Kaitlyn, Jake, Stanley, Jolene (who was being admitted today when we were there for her last round of chemo), Lexie, Caroline, Jannah, Daniel, Jacob W, Coleman, Julian, Courtney, and so many more. Also our cancer kids who have already earned their angel wings including Jessica, Scott and way too many others.

xoxo Kim

The Eve of Christmas Eve. The weekend was spent preparing for Christmas, with last minute errands. We had a celebration dinner last night celebrating the end of Hannah's chemo and this phase of treatment. Hannah wanted ravioli, so we went Italian. Unfortunately Hannah only ate one ravioli and a bit of ice cream at the end, but it was worth it anyway. Her tastes change so often, one time she wants something and another time it tastes bad to her. I'm sure all the others in the restaurant were wondering why Hannah's head spent so much time on the table, but it's par for the course right now. Colby tried to keep her spirits (and her head) up by telling jokes and stories.

Tomorrow we go back to clinic to check her counts. I hope they are good so that we can attend church on Christmas day.

On to the fun......Day #10 arrived last night, we found it on our way out to dinner. They couldn't wait until we got home, so they opened it right away to find 10 lords a leaping...or rather one snowman leaping, so cute! Clue #11 is here tonight, but they have already gone to bed so it will have to wait until morning. Do you think the final package tomorrow will contain the identity, or another clue???

xoxo Kim

Today was the last day of school for the kids before vacation. I had originally planned for Hannah to attend in the morning, then be at the class party. Unfortunately, too many kids in the school were sick (and also wanted to attend their class parties). I can't blame them, just have to stay away. She hasn't been in school for over 3 weeks so for her to go just for the party and then get sick right before Christmas would be pretty silly. She wasn't adament about going anyway, and still felt pretty tired, so she didn't put up a big fight. We were able to go to school and deliver the gifts we had prepared for the teachers. We stayed in the office, to avoid all the germs in the classroom, if at all possible. After the delivery and a bit of painting with Mrs. Grossman, she was ready to leave.

She did eat a bit better today. The last two days were almost like it was when she had stopped eating totally. It is very frustrating, for all of us. You don't realize how much in your family life centers around eating. You sit down with the kids in the morning before school to have a quick bite, talk to them a bit before they are off to school, they eat lunch because they are hungry and dinner is a nice relaxed family time (sometimes anyway). When you have a child who covers their face, cries at the mention of food and your whole mealtime becomes a struggle, it is very stressful.

I just keep thinking that each day is one more day away from chemo, so hopefully one more day closer to feeling better. In reality, her counts may still be on their way down, but it's still another day further from the chemo and the cancer. I don't know if mentally and emotionally things will ever change. It takes a very long time, sometimes more than a year for the brain and body to heal after major surgery, full brain and spinal radiation, and months of chemo, not to mention all the emotional issues she has had to deal with.

Hannah still remains somewhat emotionally unstable. She can be content and satisfied one moment, but that change quickly change. Whenever she is faced with a conflict (whether it's a disagreement or a discussion on the particulars of a situation) she can quickly cry or lash out with yelling. She seems to have trouble negotiating anything, and it is all black or white. If she is not right, she gets very upset and quickly. I have tried to explain to Colby that this is a product of the surgery, and the resulting PFS (posterior fossa syndrome), but it's not always easy to remember that. Still if these are the things we have to complain about right now, it's ok. The cancer is gone.

On to better things....Day #8, last night 8 maids a milking was a cute kitten who liked to drink milk and tonight we just now recieved #9 (Hannah was trying to catch anyone outside, but no luck!) which was 9 ladies dancing (how about 1 barbie ornament), and one of them loves barbies. Another important clue! Here is Hannah with our ever growing and beautiful tree. This is still so much fun!

I didn't mean for this entry to be so long. I did want to point out my friend Heidi who left a comment last night on Hannah's blog. Her daughter Jessica, a remarkable young lady (a photographer, artist, incredible writer, etc.) died on June 9, 2007just three days after her 17th birthday from a malignant brain tumor called anaplastic astrocytoma. I have never met Heidi in person, but know her from our online brain tumor group. She is a wonderful lady (as you can tell, leaving a post on Hannah's site, after her daughter has passed away) and handles this whole thing with wonderful grace and frankness. I like that. I am proud to call her my friend. Here is her daughter's site: http://caringbridge.org/visit/jessicarandall

xoxo Kim

Package #7 has arrived! Seven swans a swimming has turned into Santa in a canoe (very funny). They like to swim! Yet, another clue. The girls (and parents) wait with anticipation each day to see what is coming next and true to put together the clues to the puzzle. What great fun.

Today was not such a great day for Hannah. She got up at 9am feeling ok. She ate 4 small cookies for breakfast. At noon she asked me to lay down with her, and she napped until 4pm. She ate some ice cream, but refused anything else. Tonight at dinner she was crying, saying her stomach hurt, so we added another medication. She gagged on her pizza, has refused her soup, jello, and is now trying to get down a cracker. She hasn't had a day of eating like this in quite a while.

This morning was her last dose of the appetite stimulant that we have been slowly reducing over time. I hope this trend of eating doesn't continue, I can already see a change in her body from the last week or so. She will definitely not go back on this medicine, but we would prefer if she could eat on her own and not have to switch to another medicine.

Tomorrow is another day, another day further from chemo, and hopefully feeling a bit better.

xoxo Kim

We spent the morning at clinic again today, this time getting Hannah's MRI's. It is actually a four part MRI, the head, the spine, the head with contrast dye, and the spine with constrast dye. It's a long time to lay still, but she gets small breaks in between. She did really well. She does have little signs for me like moving the feet a little is just playing around, moving the feet a lot means I have to go the bathroom NOW!

The results usually take a day or two, the pictures have to be read by the radiologist before they can release anything to us. I received a call on the way home from the doctor's assistant. It had only been an hour. Usually that means one thing-it's BAD. They only call you so quickly if they see something. As she started speaking, all I could hear was "come right back to the hospital", but the words were "all clear, everything looks good!" This lady is new at the hospital and obviously doesn't know the "make them wait" strategy. She almost gave me a heart attack!!

All we need now to complete our lucky three before Christmas is a good check up on Monday, Christmas Eve at the clinic. I'm praying that her counts are holding up and she won't need blood or shots around the holidays. They did say they might let her go a bit lower without trying to artificially raise her up since she has no more chemo left. But, they can only go so low before they have to give a transfusion or give her the ANC boosting shots.

Now for the fun stuff-CLUE #5, of course, 5 golden rings. We didn't find this clue until this morning, it had blown behind the Cans for Cancer bins. Hannah and I opened it at 6:30am when we left for clinic. Now we know they are "5 of them". The rings were great......can't wait for #6!!

Tonight was Dave's birthday, so we celebrated with homemade cards from the girls, and a cake that Hannah helped make and decorated by herself. She really does love to bake. Here is a picture of Hannah's card to Dave, modeled after a card she saw earlier. If you can't quite read it, is says:
Why old people should not tell jokes
Person #1: Knock Knock
Person #2: Can you wait a minute, I think someone is at the door.
Isn't it a riot?

All is good and so far this Christmas season we have really been blessed. Now if some Christmas angel could swoop down and get my Christmas cards out, that would really be a miracle! Just think of it this way, we'll be unique this year, the only card you receive AFTER the holidays!

xoxo Kim

WE'RE DONE!!!

Or, as Hannah puts it, she is done (you're not the one with cancer mom). Everyone loved the sweatshirt, and she was so happy to let everyone sign it, front and back. Here are Rob, and Antonelle, both signing.

Hannah also had fun passing out all of the potholders she had made. We should say thank you to Colby too for all of her help. The fun lasted up until the time it came to access her. I hope this is the last one for a very long time. Her counts were down quite a bit, but still adequate. We will return to clinic on Monday, Christmas Eve, to be sure she doesn't need a transfusion or the daily shots again, let's hope not. That would be another great Christmas gift.

Hannah was pretty angry that she had to stay accessed today. She hates to come home with the needle in, since it's very uncomfortable, and she doesn't sleep well with it in. She won't use her left hand and keeps her left arm in a bent position while she is accessed. Tomorrow we go back for a full brain and spine MRI, and she needs dye for contrast, so they will use her port for that since she is accessed. We should have those results on Wednesday. There should be no reason to expect that they would be anything but good again, but of course the PMS (pre MRI syndrome) is setting in again tonight. After the MRI we will go back over to clinic so they can deaccess her and she can have the use of her arm back.

The NY Islanders were visiting the hospital today for their annual holiday visit. At first Hannah did not want to see them, since it was time to leave, and she was crying that she was too tired. That was fine, but at the last minute she changed her mind. We met #89 Mike Comrie, #13 Bill Guerin (team captain) and #8 Bruno Gervais. There were two other players there also whom we didn't get to talk to, and a herd of reporters and cameramen. Bruno was especially nice, and spent a bit of time talking to Hannah. He gave her a game (Operation, which she LOVES) and a really nice Islander blanket also. This was perfect timing, and really cheered her up.

I would like to announce that now that chemo is over a big weight has been lifted, we are so happy, life is "normal" again. It's very strange, maybe it just hasn't sunk in yet since we are still in the midst of all of this. I think once her counts start to stabilize, and the appointments start to get further and further apart, maybe it will feel differently. In truth, this is never over. This is another hurdle that Hannah has conquered. It's a big one and it feels good.

xoxo Kim

Well tomorrow is the big day. Another hurdle on this long road. It's difficult to describe the feelings at this time. They are mixed emotions of relief at no more toxic chemicals being pumped into such a little body, fear of not doing anything else to fight the cancer (what if it comes back), happiness that Hannah can now go from being knocked down physically time and time again to finally climbing the mountain and not having to slide back down. More on this later, on to the fun stuff!

We came home tonight around 8pm and the girls ran up to house looking for Day #4! There it was, with Colby proclaiming that it was even in a plastic bag to keep it from getting wet. We ran upstairs and waited until we were all ready to read the clue together. We have figured out the pattern, so we knew it would something having to do with 4 calling birds. We are finding the clues left very interesting and so much fun. Now we know that "three of us are children" and "four of us can read". That eliminated a couple people we thought it may be, and we each have our own theories as to who our special Christmas countdown angel is. P.S. the 3 french hens were found safe and sound behind the car last night, and unharmed (thank you though for the substitute birds, who are resting with the rest of the family in the tree anyway). Isn't this great?

We have been working and working to get ready for tomorrow. Here is Hannah preparing her sweatshirt. We made a shirt with her picture on it that says "HOORAY! I'm done with all my chemo!" Hannah decorated it with color and tomorrow will wear it to clinic for all the nurses and doctors to sign. She is pretty excited about that, and I hope it takes away some of the anxiety of the day. Hannah has also prepared potholders for all the nurses, along with lotions we are giving them. For her doctor, Alyssa, his assistant, and her friend Rob we made cookies (the ones we weren't going to make this year). Hannah to give them something she could make herself, hence the potholders. She got help from Colby, me, Emilie, Tori and Abby. It's difficult to run the loops in and out, so it was good therapy for her, but took quite a bit of time too. I know she will be very proud to give them out tomorrow.

More tomorrow, xoxo Kim

Another full week without school, Hannah was struggling quite a bit this week with fatigue and stomach issues. She often needs the extra dose of anti-nausea medicine throughout the day to ward off the stomach problems. She does fluctuate between good moments and bad. On Thursday, we went out to one place in the morning, and her stomach started to bother her. Of course I didn't have the medicine with me, and she reminded me that "you never have it when I need it." We started home, she was very quiet and said she wanted to lay down when we got home. I gave her the medicine immediately, within 15 minutes she was asking for soup, and in another 20 minutes she wanted to go to school to work on a special art project she is working on with Mrs. Grossman, her favorite art teacher. She rallied for about 45 minutes, then was ready for a rest.

We woke up this morning to find a "12 Days of Christmas" package left outside by a mystery friend. Day #1, the 12th day before Christmas was a partridge in a beautiful pear tree. Day #2 was 2 turtle doves. This evening Day #3 arrived with 3 french hens, and hint:3 of us are children. That has us thinking! What a special surprise gift, Colby and Hannah were very excited, and we're all trying to guess who our special mystery friend is! Thank you so much. Of course it's also reminding me that now there are only 10 days until Christmas, oh no!

We also started baking yesterday-remember those cookies we were NOT going to bake? We started with Hannah's favorite kind-Grandma K's russian teacakes. Tomorrow we will try to get another batch in, and that may be it. Our friend Diane brought us some wonderful cookies tonight from her cookie exchange and we will be definitely enjoying those.

We have a surprise of our own on the horizon for Monday, last day of chemo! More later....

xoxo Kim

The boys!

Just a quick update tonight. We finished putting up our Christmas decorations today. Hannah got up this morning at 9:30, could have been from the two dogs barking to go out! Hannah is so lucky to have Charley and Maisy's mom to help with Colby in the mornings, I can't thank you enough Mary!

We spent the day here doing homework, trying to get Hannah to eat without too much crying, and getting the decorations up. Hannah was able to play piano with her teacher tonight for about 10 minutes, and even though she is not up for practicing at home, she does a good job on Rudolph the Red Nose Reindeer when she is there!

Sometimes I just can't believe what Hannah comes up with. Tonight, after she had been in bed already for 20 minutes she called me in to say that she thought the last day of chemo meant "no more port sticks." I told her that she won't have to get accessed so often for chemo anymore, but that didn't really appease her . She was keen enough to mention that she might need blood the week of Christmas, which means another stick! She hears everything I say, during every conversation during the day. We talked about it for quite a while, and I told her that after about 3 months, they would take her port out, but she said she would still have to have sticks (although I know she doesn't realize she will need an IV for things like MRI's every 3 months going forward). I would rather cross that bridge later.

I love all the Christmas cards that we have been receiving. My favorite poem so far:

What cancer cannot do
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

Thank you Anne. My hope is that my cards get out sometime this year!

xoxo Kim

Sorry for the delay in the post, but I think someone has put our clock on warp speed and time is just flying by. Clinic was difficult for Hannah again, just a lot of drama. Hannah received an extra drug along with the chemo as a preventive medicine for pneumonia. She has had this drug 2 other times, without too much difficulty, but it was really bothering her stomach yesterday. The drug lowers your blood sugar so that you feel nauseous. She surprised me though by eating some ice cream on the way home from clinic.

Even more surprising was that her counts have remained fairly good and stable so far throughout this cycle. If she was feeling better, she would be able to go to school right now. But, with so many kids out sick and with Hannah not feeling very well herself, she just can't go right now. I am anticipating she won't be back until at least after the first of the year. She is so fatigued. She got up this morning at 10:15! It was good to see her sleep in, but she had a stomach ache when she woke up. We stayed at home today, did some homework, and only left to pick up Colby.

Tonight we got out the Christmas decorations to decorate the tree and the inside of the house. Hannah was very excited, but just so tired. She alternated between putting the ornaments on, resting, and crying. I must say the tree looks great, although the rest of the decorations are still in the boxes in the middle of the living room. I'm contemplating leaving them there until after Christmas! Think anyone would notice?

Hannah and I made our first Christmas cookies today. We had made the dough last week, and never baked them. We put so much work into making these cute little Santa cookies, but they were a disaster. Their heads, arms and legs fell off after baking, so they were more like Santa parts! They sure tasted good, but what a waste! We had picked out about 12 different cookies to bake this year, but after today, I have decided that we will be making "spring cookies" this year for everyone. This will be the first year that I don't make thousands of cookies for family and friends, but I just can't do it. Christmas is 2 weeks away and I am so far behind! When it comes down to it, what really matters is that we are all able to celebrate together, Hannah is done with chemo, and I hope this is a new start for her. Grandma and Grandpa are coming out for Christmas and bringing Sydney (my sister's daughter who lives in Illinois), so they are VERY excited about that. We have a lot to be thankful for this year.

I will leave you with a few pictures of us picking out our Christmas tree, and the decorating tonight.

xoxo Kim

One more chemo down and only 2 to go. Hannah did well yesterday, most likely due to the extra anti-nausea meds I asked them to give her. She played video games in her bed almost the entire time, and fell asleep with only 15 minutes left to go! I won't go into details, but she was very agitated when they went to access her port, they called for another nurse (that's a first), and Hannah was NOT happy.

She was a star at clinic yesterday. One of the nurses who was at the fantasy flight pulled up the video on Newsday.com and we all watched, which was pretty exciting for Hannah, since she had not seen herself online in the video yet.

Her white counts were surprising good yesterday, up quite a bit from last week. The doctor mentioned that this is normal as the body is making one last push for recovery, which will probably be followed by a dramatic and quick drop in counts. I guess we have that to look forward to for next week. I had hopes that she could make it school this week at least part time with these counts, but realistically, she does not feel that great. Last night she was complaining of a stomach ache, and she will still be on 2 anti-nausea meds for the next few days, one of them which makes her very tired. I am not pushing her to attend since she doesn't feel good, and she is still sleeping this morning.

I'm sure she'll talk me into baking some cookies today, that's been on the top of her list for quite a while, and the dough is already waiting in the refrigerator. I'll leave you with a picture of Colby and the brothers in the house, when they are not playing together they are cuddling!

xoxo Kim

The big highlight of the weekend was our trip to the North Pole. Anyone who lives in the area may have seen the story on Channel 7 news last night about the "fantasy flight." This is something Schneider Children's Hospital does each year for their oncology/hemotology patients.

We arrived at LaGuardia airport at 10am. The flight was to take off at 11am, and arrive shortly after at the North Pole. The NYPD band was playing, the area was decorated and busy with Santa's elves, Rudolph, Shrek (what's Christmas without Shrek?), and tons of reporters and camera crews. We saw several kids we knew from clinic, and some of the staff with their kids also, which was nice. The pilot-Captain Carl, was mingling about and stopped to talk with us for quite a while. He explained to Hannah that he had surgery, showing her the scar on his head too. At one point, he came back to ask Hannah to dance on the congo line with him and to my great surprise, she did! Here they are dancing away!

Then the time came to head to the gate and board the plane. We had to do the normal security check, shoes off and everything. It was very official and the anticipation began to build. We headed over to the gate and boarded the plane. After everyone was on, we were instructed to put down the shades on the windows, after all it was a secret flight to the North Pole. The pilot started the plane, we backed away and "took off". The plane taxied over to the North Pole, probably about 15 minutes total while we all sung Christmas carols together. We sat next to another little girl and her family, turns out she had medulloblastoma too. She had a stem cell transplant in July, since her cancer also extended to her back. She was still wearing a mask, since she was still at risk for germs.

We all got off the plane in the North Pole and were greeted by Santa and Mrs. Claus. The area was sectioned off for us, and decorated with tons of balloons. There were carnival games, face painting (where Hannah tried to talk the lady into a full head painting), an area to talk to Santa, a large food buffet, a jumpy blow up, and Hannah's favorite-cotton candy. Here is a picture of Hannah and I with Santa. Everyone was just so caring and giving and supportive for all the children. It was really amazing, and much more than we had expected.

I just checked Newsday's website, and they have a video taken during the party. Our friends Debbie and Jake are on there, as well as so many others we know, and Hannah and I too! Check it out HERE. After the Newsday site comes up, look for the video section down a bit on the left hand side. The video is entitled Kids Fly to North Pole. For now, it's the first video listed. It gives you a good feel for what it was like, exciting and fun!

I'll leave you with a few more pictures of the day. Tomorrow is another chemo day, one more closer to the end.




xoxo Kim