Monday, Dec. 31, 2007

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

Friday, Dec. 28, 2007

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

Monday, Dec. 24, 2007

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

Sunday, Dec. 23, 2007

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

Friday, Dec. 21, 2007

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:

xoxo Kim

Wednesday, Dec. 19, 2007

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

Tuesday, Dec. 18, 2007

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

Monday, Dec. 17, 2007


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

Sunday, Dec. 16, 2007

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

Saturday, Dec. 15, 2007

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

Wednesday, Dec. 13, 2007

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

Tuesday, Dec. 11, 2007

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

Friday, December 7, 2007


Hi, this is Tod and I would like to wish everyone a Merry Christmas.

Tuesday, Dec. 4, 2007

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 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

Sunday, Dec. 2, 2007

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

Thursday, Nov. 29, 2007

This has been sort of a crazy week here at our place. Monday was chemo and the blood draw to check Hannah's adrenal function, Tuesday Hannah felt surprisingly bad, Wednesday Hannah lasted 1 1/2 hours at school before coming home too tired and then at night the news of her test results.

Although our oncologist had told us that "this isn't normally an issue, and I'm not concerned about Hannah", her cortisol level came back at .3. Without even knowing what the normal level should be, I knew this didn't sound good. Normal cortisol levels when drawn between 7 and 8 am should be 5-23. The lowest acceptable level is usually around midnight and is 3-15. This means that her body is producing almost NO cortisol.

For those of you that want to know what this means, read on. If you want to skip all the technical jargon, head to the bottoms. Basically your body's stress system relies on two main hormones-adrenaline and cortisol. Everyone is familiar with adrenaline, and how it works in your body short term if your body senses a stress situation. Cortisol is similar to adrenaline and works in the long term. These hormones control many important body functions like regulation of glucose, blood pressure, ability to fight off infection and reduce inflammation (also key in fighting tumors) and many other things also. In times of stress of the body, the cortisol level increases dramaticallly to ensure all of these important body functions continue normally. That is a very simplified explanation of a very complicated hormonal process.

The risk to Hannah with such a low cortisol level is in a stress situation to her body. Stress situations include fever, cold, virus, vomiting, anesthesia, broken bones, etc. Her body could not produce the necessary cortisol and she would most likely become hypotensive and go into shock. Doctors do not immediately look for adrenal suppression and assume that there may be an infection, so the wrong thing is treated which can result in serious complications or death. However, because we know Hannah's cortisol is low, we will always be able to mention this to the doctors if Hannah is sick or in a stress situation. The had us fill a prescription at the pharmacy already so that we always have hydrocortisone on hand, should Hannah become sick and need it right away.

My first question was how this was to be treated and how can we fix it right away. I feel like she is a walking time bomb. I assumed they would give her hyrdrocortisone to increase her cortisol level. However, the doctors want to do nothing! We are slowly weaning her body off the Megace appetite stimulant and hope that her adrenals will begin functioning normally after it is out of her system. They do not treat low cortisol in this case, because giving another steroid is doing nothing but replacing one steroid for another. It will not help the adrenals to recover their own function and will basically continue to keep them suppressed because the adrenals will not have the trigger to know the level is low. It can take some time for her body to recover on its own after the steroid is stopped, we don't know exactly how long. They are going to draw blood again 2 weeks after the Megace is completely stopped, but I have seen data that says it is sometimes 1-3 months before the levels are normal again. There is also a possibility that her levels may never come back up due to permanent adrenal failure, in which case they will decide to either supplement with a steroid for the rest of her life, or always keep the hydrocortisone on hand as a stress dose.

So for now, we are watching Hannah for any symptoms, or I should say increased symptoms. Symptoms of low cortisol can include fatigue, increased susceptibility to infection, muscle aches and pains, feeling cold, impaired memory, decreased recovery from exercise, allergies, low blood sugar, burned out feeling, depression, and reduced sodium and potassium levels to name a few. Out of this list, Hannah already has nearly 2/3 of them already. We are also keeping Hannah out of school for now. She is still on chemo which means her counts are dropping, leaving her even more susceptible to infection, especially at school. She really doesn't have the stamina now anyway to attend regularly. This means she will probably be out the whole month of December, continuing on into January. This is quite disappointing, and although I know Hannah enjoys time at home, I think this will bother her to be out for such a long time without that peer interaction. But, we have to weigh the odds and the consequences are too great. Before I say for sure though, we're going to see what her counts are on Monday when she is scheduled to get chemo again.

Sorry for the very long post, hope your eyes are still open! Thanks for visiting, and we will keep you updated as always.

xoxo Kim

Tuesday, Nov. 27, 2007

One day after chemo, Hannah spent the day at home today. After not feeling well last night, I tried to wake her this morning and she was really having a hard time. I finally decided to let her sleep and go to school a bit late, because she usually wakes by 8 or 8:30am or so. She slept until 10:30, then looked pretty rough. She had dark circles under her eyes, wasn't eating anything and just seemed very lethargic. By mid afternoon she was complaining that her stomach felt "funny", more nauseous than painful. I gave her some more anti-nausea meds at 4pm, then again before bedtime. Hopefully that will help for tomorrow.

I am surprised that this chemo has hit her so hard so early. The first two rounds of this medicine was easier than the others. The first time Hannah had this medicine, she had absolutely no reaction, and her blood counts stayed up. The second time (which was round 6) she also handled it well, by the 4th dose at the end of the round, her counts were quite low and she needed a platelet transfusion. But, through all of that, she didn't experience much other than tiredness. Llike they told us, each round is harder on the body, and this being the last, I guess even the easiest chemo affects her quite a bit. I'm a bit nervous because this is the first of four days of chemo, I'm sure it will get progressively harder.

I hope she is feeling better by Saturday, because we have been invited to go to LaGuardia airport on Saturday for a trip to the North Pole! We board the plane, and head over to the North Pole (which means we taxi over to another gate), and when we arrive, we are in the North Pole complete with Santa and elves. Hannah is very excited, and I am as well, it sounds like great fun and we are so happy that Childlife has invited us, since it's by invitation only. I'm sure we'll have lots of pictures from that.

Until then, we will just keep an eye toward the prize....the end of chemo.

xoxo Kim

Monday, Nov. 26, 2007

Another day of chemo down, three more to go. We arrived early today to have Hannah's blood drawn for the adrenal test, however they didn't get around to drawing it until 10:30am. Unfortunately, the cortisole levels peak around late morning and we want a reading at their lowest to be able to get an accurate reading of how much cortisole her body is producing. The test results will most likely be ambiguous, but we'll see. If they show low anyway, then we know there is a real problem, when they are supposed to be at their highest. Most likely, we will need to have it done again. Next time I'll do it myself if they can't get it together. The results should be back by Wednesday or Thursday.

Hannah had a good day today, slept during most of it and we got home about 5pm. I must say she still HATES to be accessed, today was very bad for her. It could be that she was sleeping when they finally got around to doing it, and I had to wake her up and carry her over to be tortured.

She is now happily telling everyone that we only have "three more Mondays and then we're done with chemo!" She even told the security guard today when we were waiting for our car. She has some BIG plans for after chemo, that's for sure. She is still trying to figure out a way to get to Grandma's house for Christmas. I broke the news this weekend that it really wasn't possible, even though we're done with chemo, her counts will be very low for the holidays. We don't care though (I can say that now, just as long as we're not in the hospital) as long as we didn't have any more delays. Hannah also has some very ambitious plans for making something for everyone at clinic for the holidays. I was thinking cookies, but she is thinking cookies AND ______ AND _______, can't give away the secret yet.

She was very talkative tonight on the way home, ate lunch on the way home and also a good dinner. After dinner she complained of a headache. I was then getting her ready for bed, figuring she wouldn't do any reading for school, but she wanted to read a book, so we did. She read for 55 minutes! On and on, she wanted to finish the book! Unbelievable for a kid who just had chemo pumped into her little body today. She went to bed fine, but was crying a short time later because her head hurt pretty badly and she felt sick. I gave her some more anti-nausea meds, hoping it works on her head also. We'll see how she feels for school tomorrow.

A bit blurry, but you get the idea!

xoxo Kim

Hannah's Life Video

You may have noticed that I added another element on the left hand side. This is a video from Hannah, made by Hannah and edited by Hannah. She also chose the music by herself from some I had on my computer. The song is from Mark Schultz entitled Broken and Beautiful, how appropriate is that? I didn't even know she was doing this, or see it until after she was done. She was very proud of this video, and wanted to show everyone what her life was like during her treatments. She also included many pre-diagnosis pictures of herself, which may be interesting to those of you that didn't know Hannah pre-diagnosis.

I think it's awesome, and it brings a tear to our eyes every time we watch it. Dave and I just looked at each other after we saw it for the first time, not knowing what to say.

Some of the photos are a bit blurry, and I'm trying to fix that, but until then, I hope you can view it and enjoy.

xoxo Kim

Saturday, Nov. 24, 2007

Being thankful is the theme of the weekend. This Thanksgiving has been a bit different, finding out that a good friend just had a poor MRI showing new growth of his tumor, dealing with another possible health scare with Hannah, and receiving notification that our health insurance has been cancelled. WHAT??

Ok, we became aware recently that the appetite stimulant Hannah has been on for several months is 1) a steroid and 2) the cause of adrenal suppression in many pediatric patients. What does that mean? It means that it could cause Hannah's level of cortisol to be severely decreased or eliminated all together. This is a very serious issue, and if not diagnosed, results in death due to cardiac arrest. This was brought to my attention from a post online by a friend whose son just experienced this exact situation. It was a very scary situation and required immediate interaction with supplements, which he may need to now be on for the rest of his life.

We immediately started researching and emailed Hannah's doctor (who is the same doctor as our friend that just found the problem). He did say he is not concerned about Hannah and this condition, but agreed to have her levels checked. They have to draw blood in the morning, so Monday morning before chemo, Hannah will get a blood draw to check to see if her levels are adequate. I would also like to take her off the steroid as soon as possible, but it has to be tapered down, not to cause the same issues with her levels. We'll be looking for something else to help her eat, which is still a daily struggle.

And our health insurance-it seems our insurance company has decided to pull out of New York, which means they have dropped us. They gave us the required 6 month prior notice. We are now working with our insurance rep (and good friend) to see what our options are.

But with all that craziness happening in our lives, we still have much to be thankful for. Here is Hannah's Thankful list, which was published in our local paper this week along with others from some of her classmates. Hope everyone can read it, they published her original letter.

xoxo Kim

Thanksgiving Day, 2007


We started off the day with a 5K Turkey Trot, an annual fundraiser for the high school. We did this race last year, before Hannah was diagnosed and Hannah came in 2nd in her age group. Last year the weather was horrible, with driving rain and cold, but today it was beautiful and even hot once you got going. I was thinking today as we did the race that last year, even with that stupid tumor in her head, she was able to run/walk the entire way!
This year she did great, walking the start, walking some during the race and even running across the finish line. The rest, she was in the stroller, enjoying the ride. I was happy we were there and she could participate at all, amazing! Here is a picture of us before the race, and of Hannah and I at the finish line.

We headed out then for dinner with Aunt Kathleen and Bill. Here is what Thanksgiving looked like for us-of course Tod was there! All was great and it was a relaxing and wonderful afternoon.
I read something recently on another child's website named Coleman, who also has medulloblastoma. He is adorable and only 4 years old and just recently had a relaspse of the cancer. I visit his site often. Yesterday is mom posted that she "read something about how when you take a road trip to a beautiful place, you may have to drive through storms, forks in the road, twists and turns…the scenery along the way may not be as pretty as your final destination, but you must take that road to get you where you want to go." That’s how we’re thinking of our journey, we’re a few more miles down that road. Hannah in the home stretch.

So much to be thankful for including all of you. Our love always,

xoxo Kim

Tuesday, Nov. 20, 2007

We went in today for a clinic appointment as well as an audiogram. Hannah's counts were acceptable, her white blood count and neutrophil count went way down, which I had expected since we stopped the shots to keep them lifted. They both went down by more than 50%, while her red blood cell counts continued to go up. All counts are good enough to get chemo next week, even if they are still not in the normal range. Once they start on Monday, we will continue through, no matter how low her counts go (to a point I guess.) It's almost surreal to think that we will be starting her FINAL round of chemo next week. I hope we never have to do chemo again, that is my holiday wish.

Clinic was kind of fun for Hannah today. We brought in a huge box of crafty items from Oriental Trading. This was from Hannah's Cans for Cancer funds. She had the best time shopping for all of the goodies online. We knew they needed craft items, so we brought in several of Hannah's favorites. So many of you have had a hand in this, THANK YOU SO MUCH!

Next was Tod! We had him hidden in my bag under the blanket when we first arrived, trying to keep it low key. It was obvious that that was not to be for very long. Jan, Faye and Rob got him first, then all the nurses came in to see him, then lots of our friends at clinic including Kaitlyn and her mom Carolyn. He wasn't hidden after about 2 minutes. Hannah loved showing him around, although at one point it became a bit overwhelming for her. Not only is she still tired physically, but she is also tired emotionally and things that would not normally bother an eight year old bother her. I believe this is still a side effect from the surgery (posterior fossa syndrome), but it could be a combination of the surgery, the radiation and the chemo. I don't know if it will go away or change at all. We are used to it, but I know it surprises others (why is she crying?). She usually gets over it quickly if she is distracted.

Then we headed to get her audiogram. Her hearing is at jeopardy from some of the chemo drugs, so she has to continue to get her hearing tested. Her hearing declined again today, although only significantly at the highest frequency. Her hearing in the normal frequency is still within normal hearing range. It can still go down, but has less of a chance to do so without the damaging chemo drugs. Again, Tod was a big hit, except with one lady who said "you know that is not allowed here, but I won't make a big deal about it." We were on our way out anyway.

I forgot to take my camera today to clinic so I have no pictures to post, unfortunately. We'll try to get some more Tod pictures on here soon, I know Kaitlyn wants to see them!

xoxo Kim

Sunday, Nov. 18, 2007

We had a very nice weekend, knowing Hannah's counts were up we were able to have fun without the fear about risk of infection. Hannah's counts may be up, but her stamina is still very low. She went to school on Friday, and did very well although she didn't last the entire day. They called me about 2pm to pick her up, and I have never seen her so tired. She was really wiped out and looked exhausted. She came home and rested, had something to eat and we headed out to gymnastics to visit and show off Tod. We went to dinner afterwards with Tori and her mom, but Hannah was still pretty tired and wouldn't eat a bite. Wouldn't even eat the ice cream.

Saturday and Sunday we just played games, ran errands, went out to the movies and tried to keep Tod from once again peeing on the carpet. We think he had a break through tonight when all at once he ran toward the door, we let him out right away and success! Let's hope it's a trend. Hannah had been wanting to see the movie Fred Claus, so we went this afternoon. It was a good movie, and as Hannah describes it, "emotional at times". She and I were both crying. But it really got bad when, at the end of the movie, all the elves gather around the globe to look at all the children around the world opening the toys that they had made. It was very touching, but all I could think of was that "our" kids got cancer-what kind of gift is that? I had to try really hard not to completely lose it. Hannah didn't have cancer last holiday season. Let me rephrase that, we didn't know Hannah had cancer last Thanksgiving or last Christmas. Our holidays were like all of yours, with family, fun, food, thanks and lots of gifts. This year will be different. I think that THANKS will top our list. We have had a really *#$#@#& year, but we have so much to be thankful for. Cancer is not a gift anyone has on their list, but in some ways it is a gift. It is a gift to open your eyes to what really matters. It has changed our lives in so many ways, with so many wonderful people we have met, some new friends, some old ones and all of you so wonderful. Yes, this year will be different, and has been different beginning on January 30th at 1:00pm.

xoxo Kim

Thursday, Nov. 15, 2007

Good news today from clinic. We were very surprised to see that Hannah's counts were actually quite good, especially considering this is day 11 of her cycle, when she is usually very low. Her numbers were:

ANC 4272 Up from 73 on Monday (over 1500 is good)
WBC 6.89 Up from .306 on Monday (normal is 5-13)
Hemoglobin 12.3 Up from 7.61 on Monday (to be expected since she had the transfusion of blood on Monday)
Platelets 91.5 Up from 67.7 on Monday (a bit low, normal is 140-400)

Even the doctors were surprised at the turn around in her numbers since Monday, and Hannah was so happy! She will get one more shot to maintain her ANC tomorrow, just so it doesn't drop dramatically.

I had tried to prepare her for a stay today for a transfusion. I told her that this means that we will start her last round of chemo on November 26 and will be done by Christmas, HURRAY!!!!!! I can say that with certainly because once they start the round, they do not stop for low counts. Like she told Grandma, Grandpa and Aunt Susie today, "Well, we got lucky and my count was 91 which means I'll be done by Christmas".

Unfortunately that does not mean we can go on our planned trip to Grandma and Grandpa's for Christmas. Hannah's last chemo treatment will be December 17th, and she'll need a transfusion most likely either the day before Christmas or the day after. So, we can't be half way across the country. I know she will be disappointed, but we'll deal with that then, but we will be officially done, with chemo anyway, by Christmas. What a great present!

xoxo Kim

p.s. We may be thrown out of the hospital before then anyway, we are bringing Tod in next week, without anyone noticing of course, ha!

Tuesday, Nov. 13, 2007

Yesterday was a pretty long clinic day, so I didn't get a chance to make an entry. Hannah's counts were low as expected. Her hemoglobin was under 8, although not terribly bad at 7.61, but considering her history and where she is in her cycle, they wanted to transfuse her with blood. I was expecting this since Hannah has looked terrible in the last several days, with no color, very low energy and dark circles under her eyes. This meant a long day since they first have to "type and cross" the blood-meaning check Hannah's blood including the antibodies in her body, with donated blood that has the same blood type and antibodies. They mix the blood in the test tube first to be sure there is no reaction before giving it to Hannah. All this means it takes some time before the blood comes up for transfusion.

Her ANC (white count for infection) was only 73. Even though she was on the shots, her count was still very low. I can't imagine what it would have been without the Neupogen shots. It has gone as low as 8 during this chemo cycle previously, and she is still on the way down, so she is still on the shots. We just have to be very careful right now about germs. She is home from school again this week and not allowed in any crowded areas or high traffic areas. We will pretty much spend the week at home.

We return to clinic on Thursday, which will be day 11 of this cycle. That should be Hannah's low point in the cycle, and I would guess that she will have to have platelets, and possibly another blood transfusion also. I'm hoping for just platelets because they only take an hour to transfuse, compared the the blood which has to go in very slowly at a minimum of 3 hours.

In the midst of all this, Hannah fell and hurt her foot on Sunday at the horse show. Uncle Mike was visiting for a couple days, and Hannah came with him, Tod and Dave to see Colby in the show. She tripped right when she got there and hurt her foot. There are no noticeable signs of injury, but it has really bothered her since then. At first she couldn't put any weight on it at all. Now she is limping around, walking very gingerly. They looked at it yesterday and said it looks fine, but if it's not better by Thursday, she will have an x-ray. I think it's just sprained. These pictures are from the show, Hannah with Uncle Mike and Tod-he blends in with the blanket but he is in there, and with Colby-who got reserve champion at her show and Dave!

xoxo Kim

Thursday, Nov. 8, 2007

I have managed to post Hannah's commercial that she was in for the Songs of Love Foundation here on the left hand side. It is a streamed link from YouTube, so if you have trouble viewing it here, please let me know and I can email you the direct link for YouTube. The commercial is only playing in the New York City area. I am still hoping to see it sometime on tv. Hannah has seen it and she said she doesn't like the part where they show her eyes moving to the side. I told her it's because she wouldn't look up during the filming of the whole thing! She was very tired, and had just been given a strong anti-nausea medication. I felt badly for her, at the time it was the last thing she wanted to be doing. But, she has listened to her song over and over and over and we love it! John Beltzer and his team do such a wonderful job and are so giving. It's a wonderful organization.

Also, here are some more pictures of Tod. Hannah took the two of him outside, and the other is of her giving him a bath today. We took him to the vet, and he is now on medicine for a cough, but he seems to be doing well overall. He weighs a whole 3.8 pounds.

Hannah had a quite a busy day today, taking Tod to the vet, doing homework and her studies, making a card for her classmates (with lots of pictures of Tod), giving Tod a bath and taking one herself. By 6:00pm she was overtired and crying. With her falling counts, her stamina is going down right now. She needs a nap, or early bedtime, or both, but overall she is hanging in there. She ate a little more today, though not up to what she was eating before chemo.

xoxo Kim

Wednesday, Nov. 7, 2007

Tod has landed!

Here are a few pictures, yes he is really that little. We picked him up today and everyone was so excited! They couldn't have been nicer at the puppy store, and gave Hannah the puppy along with food, a leash and a collar. Riley is wondering what in the world has happened, but he has been very good with him so far. Riley is just so much bigger than Tod, that his idea of playing just knocks Tod right over! Tod seems to be holding his own, he is biting Riley as I type. They seem to like each other and there is a lot of licking going on.

Hannah slept until noon today, and then in bed again by 8:30 tonight. She isn't really eating anything, and is complaining of a stomach ache from the chemo. I hope this goes away within a couple of days. We also started shots again today in hopes that her ANC doesn't go to zero again this time, but we'll see. For now, we are lying low and staying away from crowds and germy situations. I'm sure Hannah will find plenty to do with Tod here.

xoxo Kim

Tuesday, Nov. 6, 2007

Round 8 is officially over (at least the chemo part of it, the cycle is actually 21 days long, today is day 2). But, no more chemo until Round 9!!!!! We now only have our very last round of chemo left, pretty hard to believe. I have updated her chemo schedule on the blog, always feels good to add one more round to the "purple" side.

Hannah did ok today, she doesn't feel that well, her stomach hurts, she is very tired and her counts are headed south. You can tell by looking at her, that she's not up to par. She is sleeping now, and getting hydrated through tonight. I will deaccess her here at home tomorrow morning. It was nice spending the day with Kaitlyn and her mom Carolyn today in clinic. The girls were both there getting the same chemo (part of it anyway, for Kaitlyn).

We are going to be staying in for the next several days, as I know she is very susceptible right now to infection and we want to do everything we can to stay OUT of hotel Schneiders. The only thing on the agenda is TOD, and we will hopefully know more tomorrow. I don't know who is more anxious to get the new dog, Hannah or Colby.

xoxo Kim

Monday, Nov. 5, 2007

We finally made it-but just barely! Hannah's platelets were great, going from 61 last Thursday to a whopping 244 this week. However, as I suspected, since we stopped the Neupogen shots, her ANC went back down. It was only 687 when read by the machine, which would have stopped us from getting chemo, but to get a truer reading, they calculated it manually and it was 807. Her ANC has to be at least 750 to get chemo (which, by the way, is still considered neutropenic.)

So, today she started Round 8. She is on at home hydration right now, to be sure the chemo is flushed out of kidneys so they are not damaged. Tomorrow, same thing, more chemo, then at home hydration again. This chemo is quite long, we have to wait until her urine is sufficiently diluted, then 1 hour for the chemo, then another 4 hours of hydration at the clinic. We left this morning at 6:30am and got home tonight at 5:30pm. With all the anti-nausea drugs she also gets, along with the anti-pneumonia drug today, she wasn't so happy. Or it could have been that this morning she ate two packs of Oreos, 5 bags of Doritos, and an apple all before 11am. That was it until dinner tonight when she ate a cheese tortilla.

I think Tod would have made it feel better, but I was glad he wasn't here with us yet. They said today we could pick him up on Friday after he has a full vet check this week, but we're hoping it's a bit sooner. We'll check with them on Wednesday. She wants to take him to clinic next week for her blood check, but considering the risk for a transfusion and a very long stay at any time, that won't happen (yet). We will sneak him in one day, he could easily fit in your pocket.

One exciting thing I forgot to note from yesterday. Someone mentioned that they saw Hannah's commerical for Songs of Love on television this past weekend. She thought it was either the Discovery Channel, or TNT so I have been browsing through the stations since then trying to catch it. She said it was wonderful and brought a tear to her eyes! I'm not sure if it is playing around the country, or just in the east but I will try to find out. The production company is sending me a copy so I will post it when I receive it, but I would really love to see it on tv!

Thanks for continuing to visit and lend your support to Hannah and our family. It means a lot that you have stuck with us through this long journey.

xoxo Kim

Sunday, Nov. 4, 2007

Tomorrow is our day, so let's hope Hannah's platelets are up over 100. The doctor seemed to think it should be up by tomorrow, so we'll see. Hannah will come home with her needle still in, and receive 12 hour overnight hydration. Then we go back Tuesday for another day of chemo, and more hydration Tuesday night. I will deaccess her myself on Wednesday morning. Keep your fingers crossed everyone!

So it seems the word is out about Tod (named after Tod-with only one "d"-from the Fox and the Hound). A local puppy store offered Hannah a puppy about a month ago. We have been visting shelters and the puppy store off and on for the last several months. Recently, the owner of the puppy store told Hannah that when she was ready, any puppy in the store was hers. Talk about excited, WOW! I told her that after this round of chemo, we would go and pick out a puppy. Last week she fell in love with a small puppy-he's a cross between a Chihuahua and a Boston Terrier-a dog that is small and stays small, which was her #1 request. I finally gave in and said it was time. We don't have it yet. We were due to pick it up today, but it seems the dog may be recovering from an illness, so the vet will check it out first before we bring it home, just to be sure. I will wait to post a picture until I know for sure. Hannah was very upset tonight when we didn't bring it home and cried the whole way home. We have already been shopping and have everything all set for the new addition to our family. So, stay tuned for more information very soon!

This weekend I did have the opportunity to attend a spa day at the hospital for moms. It was a very nice day, not so much because of the wonderful aromatherapy and massage, but because of the other moms I got to meet. I see so many children and their parents at clinic, but really do not get to meet or talk to them. I know them only through their children and their children's illnesses. I met Carolyn, Jean and Debbie and spent time just taking with them. When you are able to speak together about things like neutropenia, counts, ANC, hemoglobin, Cyclophosphamide, platelets, stem cell transplant, etc. without explanation it bonds you. It really is like another world, one that you never wanted to become a part of, but one now that I feel comfortable in. This world is now our reality.

More tomorrow, after our hopefully long day at the clinic (as Carolyn put it!)

xoxo Kim

Thursday, Nov. 1, 2007

No chemo today, unfortunately Hannah's platelets were only 61, and they had to be 100 to get the chemo. It's probably better anyway that her body has some extra time to come up and past 100, so that she is stronger before the drug totally collapses her again. We have an appointment for Monday, and expect that her counts will be fine to have chemo on Monday and Tuesday.

We all had fun yesterday trick-or-treating. Hannah made it to about 8 houses, before she tired out. Then I carried her for another 8 houses before I got tired, and she made it the rest of the way in style riding in the wagon. Colby took her bag around for her, so she still collected a lot of candy (just what we need, more candy!!). She is a great big sister and had no trouble carrying around 2 heavy bags of candy. I think Hannah got a bit bored in the wagon, watching everyone else run from house to house. She told me that it was not that much fun because she was too tired. I have to give her a lot of credit though, she didn't complain and was a trooper. It was hard not to notice the enormous disparity between Hannah in the wagon and all the other kids running around having a great time on Halloween. The look on her face was so sad and quiet and lonely.

Colby went afterwards with her friends and Hannah wanted to stop at two houses on the way home-the neighbor down the road that we don't know with a golden retriever, and our neighbors the Rohrbachs. We did both together and called it a night.

Here are a few pictures of us on Halloween.
xoxo Kim

Tuesday, Oct. 30, 2007

Hannah had a good day today, made it through a good part of the day at school. I picked her up at 1pm. She ate a good lunch, then rested a bit before we started making cookies to take to clinic on Thursday. Hannah is going to dress up like a chef and hand out the cookies. She really wanted to SELL them and put the money in Cans for Cancer, but I convinced her that giving them away this time would be best. She said when I turned my head, she would be selling them, ha!

Here are a few pictures I couldn't get to post yesterday, wanted to share them for the weekend. We kept Hannah pretty sheltered this weekend, considering her low counts and fatigue level, so things were pretty low key.

With Colby and their friend Emilie (and Hannah's surprise cake),

Out walking the dog yes, she's in there

With one of Grandma and Grandpa's huge pumpkins they brought from their own garden!

xoxo Kim

Monday, Oct. 29, 2007

Again, mixed results from our clinic visit today. All of her counts were up some except for the hemoglobin, which was down. So, we had to stay for a red blood transfusion. This is the long one. We left the house at 7:30am this morning and got home at 7:30pm. It takes 3 hours to transfuse the blood, since it has to be done very slowly. It also takes a while to get the blood upstairs, it has to be typed and crossed to be sure it matches Hannah's blood and all the antibodies too. Our appointment today was at 10am, they started the transfusion at 2pm. Hannah got in a couple good naps, so that was good!

However, her platelet count was only up to 34 (from 11 last week). Her platelets have to be up to 100 to get chemo this week, so the doctor said to expect a delay. Another delay. We are creeping closer and closer to that Christimas date. Frankly, I can't see any way that we will be done before Christmas but I don't want to tell her that yet. We'll just keep on going because one day it has to be over.

Hannah has been having foot and leg pain when walking. It started last week, and at times is pretty bad. She is limping quite noticeably and it hurts to walk. The doctor today said it was probably due to the Neupogen shots she is getting every day. She has been on it for quite a while now. She got a shot today at clinic (although she always makes me give it, even at clinic) and will get one more shot tomorrow. Her ANC is pretty good, so hopefully this time when we stop the shots it won't drop again until after treatment. I did notice today that when I went to give her the shot, they had prescribed more than twice the dosage she has been getting at home. It was still an acceptable dose for her, but it was the WRONG dose. Again. They had prescribed an acceptable dose for her, but didn't check what she had been getting. They changed it.

Going to try school tomorrow and see how it goes. And, oh yes, Way to go Red Sox! Do you want A-Rod?

xoxo Kim

Thursday, Oct 25, 2007

We hit the clinic today, with the anticipation that they would discontinue Hannah's Neupogen shots and that we would be clinic free until chemo next Thursday. When the doctor arrived, she said Hannah's counts made a "big jump" from last week-unfortunately they were all down, way down. I was so surprised and not expecting it at all, considering that last week the doctor said her counts were on their way up, shots went to every other day and all looked good. Here are her counts:

WBC white cells- .666 (should be 5-13)
ANC- 211 (should be 1500-8000, under 500 is severely neutropenic)
RBC red cells- 2.75 (should be 3.9-5.3)
HgB hemoglobin-8.36 (should be 11.5-16, transfuse RBC under 8)
Platelets-11 (should be 140-400) dangerously low

I did notice today on the way into clinic that Hannah's teeth were bleeding, but she was eating an apple so I didn't think too much about it. I also noticed the large bruise on her leg from the shot last night, bigger than usual. Both of these are warning signs for low platelets-they are the part of the red blood cells that clot your blood. But, when she got her finger stick today, he had to work to get the blood out, so I thought the platelets were most likely fine. WRONG.

Just when you think you you have a handle on how her body reacts to chemo, things change. I can't seem to predict this at all any more. We were not prepared mentally to stay today. Hannah had to be accessed, and she was not happy about that. And, not being prepared we didn't have Hannah's new beach glass necklace (which we absolutely loved Behr family.) It will definitely be with us next time. At least the platelet transfusion only takes 1 hour (from the time they start it, you have to wait for them to be ordered, delivered and prepared). A blood transfusion takes much longer, 3-4 hours-we would probably still be there.

So what does this mean for her treatment next week? We don't know yet. We have to go back to clinic on Monday to get her counts rechecked. Hannah will also stay home from school tomorrow-her counts are just too low to be around other kids and she will probably be too tired anyway. Here are a few pictures from clinic today that we wanted to share with you. Hannah's typical day.

Our first stop at clinic is with Rob. Rob does all the finger sticks and it's the first stop for all kids coming to clinic. This is the small amount of blood they take to check her counts. It takes about 30 minutes or so to get the counts back. Rob is a favorite with Hannah. p.s. notice the Boston hat.

Next we go over to the next room for blood pressure, weight and temperature. This is the easy part of the visit.

Then we are back over to the first room to get accessed. Hannah insisted no pictures during accessing, and since she always sits on my lap for that with me holding her hands, that would have been impossible anyway. Here is Hannah getting her blood pressure and temperature taken at the start of her platelet infusion.

Then we will skip right over to deaccessing.

Here is Hannah flushing her port herself. Doesn't she look proud here?

And lastly, Hannah with her favorite nurse Antoinella. Hannah decided today that she would no longer be mad at the nurse who accessed her, but instead she would be mad at the doctor who ordered it! Yes, she came up with that one all by herself.

xoxo Kim