Hannah's Test Site

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

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

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!

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

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

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

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

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

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

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

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

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

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

I'm so excited, the Red Sox are on........ho hum..........

Seriously, we have a split household right now, with Hannah and I rooting for the Red Sox and Colby and Dave rooting for anybody but. Hannah said she's wearing her Red Sox hat tomorrow, which is pretty risky, considering we have a clinic appointment in the heart of Yankee country. I guess when you're 8 and bald you can get away with pretty much anything.

The girls carved pumpkins last night, although no one touched the "inside yucky stuff" except mom. They were hard at work and look how great they came out! I have to take a picture without the flash so you can see how nice they look all lit up.

Tomorrow we have clinic, so hopefully Hannah's platelets are up from last week, so that she can get her next round of chemo next week. She is also still on Neupogen shots, so we also hope they stop those tomorrow.

This weekend our family is heading to New York City for a pumpkin festival and walk through central park. The event is sponsored by the Pediatic Brain Tumor Foundation and the Sunrise camp for cancer kids to raise money. Hannah is going to donate money from her cans for cancer fund. We hope that the weather holds so we can attend! I'm sure we'll have lots of pictures to share from that. We are all looking forward to participating.

xoxo Kim

Another busy weekend since Hannah is feeling good and her energy level is pretty good. Saturday was Rally Day at the 4H. Here is Hannah with her purple team and Hannah on Finessa. All riders were split up into teams who then competed against each other in fun. I was a bit apprehensive with her platelet count down, but everything was fun and safe. I ran alongside Hannah during the day to be sure her horse didn't get any ideas about running off. Having said that, a few girls did actually get thrown from their horses. No-one was hurt, thank goodness, but it's still scarey to see. That's the thing about horseback riding, you can be a very good rider and still get thrown if the horse decides (which is why I'm always on the sidelines wringing my hands until each lesson is over). Colby and I spent the rest of the day traveling west to her basketball game, while Dave and Hannah came home, took a trip to the library to pick out new books with Mrs. Baker, hit some tennis balls and hung out with Riley.

Today Hannah went bowling at Mary Kate's birthday party, then came home and drove in to her dad's gym to go swimming. There is an indoor pool there that they like to go to. She was planning on having ice cream when she got home, but said she was too tired. She still gets fatigued at the end of the day, but has no trouble right now making it through the day with lots of activity.

We go back to clinic on Thursday for a recheck on her counts, hopefully her platelets will be up by then and her ANC will be ok so that I can stop giving her the shots.

Thank you to all of you who have supported Hannah in her Cans for Cancer campaign. So far she has received donations from friends in 4 different states! Thank you so much.

Hannah was at clinic today to check her levels. She was so funny when we were walking in she asked if she could watch a movie after we saw the doctor and I said "we are leaving after we see the doctor." She smiled so big and said NO CHEMO? It was pretty funny, and she was so happy.

Her counts were good and bad. Her ANC (for fighting infection) is good, but her platelets (for clotting your blood) were pretty low. They were not quite low enough to transfuse, but not far off. We just have to be careful in the next week not to do anything that would risk bruising, which could cause internal bleeding. He said horseback riding was ok on Saturday as long as Hannah didn't do anything too risky, walking and easy trotting are ok. We go back next week for another blood check, but we expect to be ready for chemo on Nov. 1st and 2nd. The doctor made the decision today to do her next round of chemo the day after Halloween, rather than on Halloween (another happy thing for Hannah today).

Next week when we go to clinic, we will also go for a renal sonogram. Her last MRI showed a cyst on her kidney. They think it's nothing, but wanted a follow up with a sonogram to be sure. We will follow this to be sure it's nothing.


Grandma and Grandpa went home today and we want to say HAPPY BIRTHDAY to Grandpa. We celebrated with him last night, here are a few pictures from the celebration. My parents have been so incredibly supportive and important to us in this, we couldn't have done it without both of you! We hope the next time we see them is in Indiana, rather than here again for another round of chemo.

We also want to say hello to our cousin Noah in Illinois who had to spend a few days in the hospital lately getting his appendix out! We hope you're feeling better really soon. We would love to go fishing with you again this summer at our next family reunion.

xoxo Kim

The link to Hannah's Song of Love is now working, just click on the play arrow on the sidebar to your left to hear Hannah's Song. I will post the words later.....

We got released today with no issues and are happy to be back home. Before leaving, Hannah got a flu injection to help protect her this year against the flu virus. Our entire family now has been vaccinated and it just shows who the wimps are!!

Hannah is on Neupogen shots again so that her levels don't go too low. She is also on two anti-nausea meds for this week, instead of the normal one. She did really well this round, with minimal bouts of nausea and no vomitting, although the ringing in her ears is already back. It did go away last time after this medicine, took a couple of weeks.

It was a very difficult admission for us this time, regardless. The floor was packed with patients, we had to move rooms once due to issues and Hannah also received the wrong dose of medicine two days in a row before it was caught.

You didn't read this incorrectly, she was overdosed, again! I won't go into a lot of technical detail here, but she was given 10 times the amount of diuretic medicine on Wednesday and Thursday with her chemo infusion. The nurse noticed it after the dosage was written differently (correctly) when it came up from pharmacy on Friday. It wasn't an easily identifiable mistake, and even though I check each dosage myself, it was very complicated to figure out and even harder to notice. It wasn't like the medicine bag said 10 grams and the dose should have been 5 grams.

We knew when the attending walked into our room on Friday night at 7pm that something had to be wrong. They don't just visit. Fortunately, all of her levels checked out, and it did not adversely affect her because some of the side effects of overdose of this medicine are quite serious. Thank goodness it wasn't the chemo, or we would be in a different situation. Doesn't leave you with the best of feeling.

But, Round 7 is complete, and we are looking toward the future. Hannah is going to school tomorrow although not that excited about it (it goes without saying that she would rather be home with Grandma baking cookies all day). I hope she can stay for the day, but we'll see. We go back to clinic on Thursday to check levels again.

Thanks to all for the cans that have been dropped off. The first thing Hannah did when we arrived home today was run over and check the bins for cans, and wow, there were lots!

xoxo Kim

Today is Friday, Day 4 of this 5 day chemo round. Yesterday she didn't nap at all, and even stayed up to watch Survivor! We try to stay busy during the day with crafts and games and movies. She doesn't like to do too much moving around because of her needle and the IV pole. Her eating is not great, but not terrible. She gets in some rice, rolls, soup, poptarts and of course a bit of candy too.

Grandma and Grandpa came up today for a visit. The brought some new crafts and a nice packet from Mrs. Grossman, Hannah's art teacher. Here is Hannah with her beautiful horse picture she colored. Mrs. Grossman always sends the best goodies, thanks! She slept today for all of about 10 minutes before the doctors came by on their rounds. Hannah is doing well and her counts are good, drifting down a bit but not crashing.

The Smiles for Scott Foundation just brought around the candy cart, so that's always a fun time. Hannah told the nurses at school that she would bring them something, so the cart came back for a second round and Hannah got something for each of them. I don't know if I mentioned before that the Foundation sent Hannah a nice thank you note after we donated the money from her bake sale. Then, a couple weeks after that we received a beautiful plaque from them also, which was personalized for Hannah and specifically thanked her for holding the bake sale for them. We were so touched by it. I spoke quite a bit with Scott's mom today, it's been 2 years since her son Scott died from medulloblastoma. She said Scott was in this room that Hannah is in for quite a while-although he was in it by himself. I'm not sure I could be back here like she is. She said she still hears the beeps of the machines at night and really can't go into the bone marrow transplant unit (where Scott was for quite a while also.)

So we are stocked for candy now, and Hannah is taking a rest, or at least trying in this very noisy room. We'll leave you this picture of Hannah getting her chemo, still smiling.

xoxo Kim

We're settled in now, second day of chemo under our belt. Hannah is doing well. She was eating well today until this afternoon, and has not eaten anything since, doesn't even want chocolate. She has been in pretty good spirits though, but she cries about once a day that she just wants to go home. Only a few more days I tell her.

We did have some excitement today. Hannah was chosen to be in a commercial for a company called Songs of Love. They are a non profit company that creates unique songs for chronically and terminally ill children. We filled out an information sheet, and they included everything in her song from family and friends names to favorite sports, animals, etc. The Childlife people here were asked to recommend a child and they thought of Hannah. She agreed to do it, so today a film crew showed up to make the production. The commercial will be aired on cable channels, and is intended to get people to donate their old cars (and money too) to the Songs of Love Foundation, so that more children are able to receive songs.

They brought with them Hannah's song, which we had not heard yet. John Beltzer is the creator of the foundation and the singer/songwriter and a very nice person. The Song of Love Foundation has been featured on the Rosie O'Donnell Show, Today Show, CNN, Black Eyed Peas concert, CBS with Dan Rather, and in People Magazine and much more.

John tried to put Hannah at ease while the crew set up everything, but you know Hannah she is pretty quiet around people she doesn't know. It was like being on the set of a big production! They did the takes over and over, and Hannah didn't have to speak much. When they asked her what she thought of her song she said "it's good." Little did I know that I would also be in the commercial (or I probably would have opted for a shower today!!!) She held up well, but was very tired from some of the medicines they had given her earlier. I wasn't sure if she would make it through, but she rallied! It will be interesting to see how it all comes together (I hear Dan Rather will be in it also from his earlier interview). I will post it here if I can do that. I will also post Hannah's song-again, barring any technical difficulties. Here is a link to their website, if you are interested in seeing all they do. Click HERE

Here is a picture of Hannah after the crew left, she fell asleep about 3 minutes after everyone cleared out.

xoxo Kim

Yes, we're in! Hannah's counts checked out today and we were admitted for Round 7. It took ony 10 and a half hours to get upstairs on the floor into a room, ugh! We got here at 8am (left our house at 6:15am) and didn't get in our room until 6:30 pm tonight. It is very packed here, and every room is full. There were three admissions today, and we were the last to get a room. But, now we are in and settled. They started Hannah's chemo before we came up to the floor, so she was even done with both of her medications by the time we arrived. So far, so good, just fatigued from the 2 anti nausea meds, and still eating well.

Hannah was able to deliver the gifts she bought today to Childlife. They were so happy to receive everything. This is a picture of Jan from Childlife receiving the goods. Since we brought them directly to Childlife, they are able to use them specifically for the hemotology/oncology pedicatric patients that are either in clinic or inpatient. Hannah is going to ask them to break out the Mousetrap game we brought tomorrow!

Hannah also feels the need to mention our Yankees. She told me that now she will root for the Red Sox because the Yankees aren't in it anymore. Just two nights ago when Johnny Damon hit a homerun to lift the team up and begin a rally to win the game, she was insistent that we email Audrey from Spaulding in Boston (who loved Damon before he became a Yankee and cut off his hair). Not many people we know switch from rooting for the Yankees to backing the Red Sox, so to all of our Boston friends, good luck!

Hannah's Cans for Cancer reached a total of $357.50 as of today. Since we are anticipating being admitted tomorrow for chemo during the week, Hannah wanted to go out to do some shopping (one of her favorite activities) to get some supplies for Childlife at Schneiders. Here is a picture of her with a trunk full of supplies. She did very well, and still has some money left over. She got so many things like play dough, markers, glue, many games, batteries, blocks, books, dvds, and so much more! We are going to ask them next time for some of their specific requests to ensure we're providing exactly what they need. We went with Grandma, and she and Colby had a great time searching for what they liked. She can't wait to hand them over to Jan and Faye tomorrow!

Thank you to everyone who has helped the cause. We really feel we're making a difference and maybe for a moment are easing the burden of the children with this terrible disease. We can tell you first hand that when you are stuck in clinic for hours getting chemo, or inpatient up on the 4th floor, this is all you have to occupy your time. Even the children who aren't feeling well enough to go out of their rooms enjoy watching a video or playing a game with their mom or dad in their room. We are all making a difference together, thank you so much!

We will update tomorrow from the hospital, hopefully counts will be good enough to stay!

xoxo Kim

Today at clinic was not what we were hoping for, but not entirely unexpected. Hannah's ANC was only 547, and it has to be at least 750 to begin a new round of chemo. I was somewhat surprised that her doctor did not put her on the neupogen shots to boost her ANC until the next round. The reasoning was that she would only get a few days of shots in before they would have to be stopped 48 hours prior to chemo. Since they don't do routine admissions during the weekend, the earliest she could be admitted to start would be Monday, and we're already scheduled to start next Tuesday. He figures she is on the way back up now, and her body can come up on it's own by Tuesday, so why put her through the shots. They are not a guarantee anyway.

So, Hannah walked out today pretty happy. No accessing, no hospital and no shots! We really don't want her treatments delayed, becuse the chemo is precisely scheduled to be most effective. The longer you get away from that schedule, the less effective the chemo becomes. We are hoping for no more delays. The doctor did increase her appetite stimulant medicine because she has not been eating well over the past 2 weeks and that is going to get even worse as the chemo progresses in the next 3 rounds. She has lost weight the last two visits, and while it has not been a substantial amount, we don't want to see that trend continue.

For the rest of this week, no clinic visits and no treatments. She won't go to school tomorrow due to low counts. We were home schooling today after chemo anyway, and already have the homework for the week, so we'll play it by ear for the rest of the week. I would like her to go to school to keep with her routine, but also don't want to risk an infection prior to the next round. She is also quite tired, her hemoglobin is low, but not dangerously so, and she is sleeping quite a bit. She'll have the next several days to rest up.

xoxo Kim

Hannah would like to announce her new

campaign. This idea originated from an article in our local paper about a women who began recycling cans to raise money. Recycling is something Hannah and Colby do regularly with Dave. They take our cans and bottles to the grocery store or the beverage center and collect the money back from the deposits. Hannah had been looking into various ways to make money to help kids with cancer and she liked the idea! The money will be used to help fund the Childlife group in the hospital. Childlife is there to help the kids deal with life while they are in clinic or in the hospital. They can take the kids' minds off finger sticks, and being accessed, nausea, and many other fears. They provide games, activities, crafts, toys, etc. for the kids to keep them occupied. Hannah and I have noticed that many of the games are missing pieces, or are in bad shape. Crayons are broken, glue is hard, supplies are scarce. They do a wonderful job with what they have, but we are hoping to give them more! Depending on how much money we raise, we may be able to contribute to other sources that also help kids with cancer.

We have already started the recycling project and Hannah has over $100 in her fund already (thanks to Melanie who donated the money from her bracelets). Here is a picture of our last recycling effort. Hannah is too short to reach the machine, so Colby is giving her a lift.

How can you help? If you live in the area, you can drop off your cans and bottles (any and all that can be turned in for a deposit) at our house. We have set up two bins in the driveway marked "Hannah's Cans for Cancer." Hannah designed the signs herself (she wants you to know that I made one of them.) You can leave them anytime. If you need our address and/or directions, please email me.

Or, if you prefer, you can turn in the cans yourself and drop off the money. We have an envelope attached to the inside of the blue bin, just drop your money in there. If you live out of town, and want to participate, please send us your deposit money and we will add it to the fund.

Hannah is so excited about this. We already received our first can donation-thank you to the Angells! With your help we can raise lots of money to help kids with cancer. Thanks!
xxoxo Kim and Hannah

Round 6 is now complete! We had mixed results today from our clinic visit. Hannah's counts continue to go down each week. Her red blood is good, however her ANC is now only 797. Her doctor said that we wouldn't stop her chemo for today since she is in the middle of the cycle, but if they do down again next week, we will have to delay Round 7 by a week in order to treat her with shots to raise her ANC. At this time, there is nothing to do except wait. We won't know until next Tuesday, Oct. 2 if she is going to be admitted or we have to hold off for a week. Obviously, we're hoping for no delays, but if her ANC drops under 750, it will be delayed. From last week, it dropped by 350 points, so although I've learned not to predict what will happen, it's more likely than not that we will have to wait.

The other thing I've learned is not to try and read an MRI by myself. I couldn't decipher anything from the 200 pictures on the MRI disk I brought home with me, and was nearly in a panic by the time her doctor emailed me. The good news is her cranial/neck MRI today was clear with no signs of tumor. I do not yet have the full report, so I don't know all the details, but most importantly, she is still tumor free! Tomorrow is part 2 or her MRI, the spine. She did great today, the MRI took about an hour and she slept for part of the time. She is very happy that tomorrow will be only the MRI, then deaccessing and we're out of there!

One more note-she did great today with accessing. About only 1 tear, and very little fanfare. I asked her why the difference now from before, and she said "you just get used to it after a while." Unbelievable!

We'll update again when we have the results of the spinal MRI. I'll leave you with a picture of Hannah and Riley. Pretty risky wearing that Red Sox hat this time of year, even inside the house!

xoxo Kim

It was a busy weekend for us. After our marathon dinner on Friday night, Saturday was horseback riding. Hannah was insistent that she wanted to canter on her horse. For those of you not familiar with horses, that means to go faster-quite a bit faster. She has been asking about it for a few weeks now, but she really isn't strong enough yet. Well her instructor thought it was worth a try, so she had 2 girls alongside her-one to hold the horse from taking off, and the other to have a hand on Hannah in case she started to fall. She got the horse to canter, and we just watched her body bobbing up and down, starting to lean a bit to the rail. I think she may have cantered once or twice in the past, so she doesn't have really any practice at it yet. In other words, she can't really keep her butt in the saddle! All was fine, it was only a very short canter and she was smiling so big! Of course, the instructor, and the other parents and I all almost had a heart attack. The only to learn is by doing, but her body is not that strong right now, so it's pretty scarey! Another gray hair or two for me, that's for sure.

Today we took a trip out to Montauk to ride bikes and hang out at the beach while the weather is still nice. We didn't get to camp this year, so we thought it would be fun just for the day. Here is a picture of Colby and Hannah on their bikes.
Hannah does well on flat land, and she is getting better at stopping without crashing into something. She can't start by herself because she can't yet keep her balance while trying to get her speed up, so I helped her since Dad's back is not up to that yet. Inevitably she would ride very far away and then stop, needing help to get started again, so we would run up to meet her. She told me this was my exercise for the day...ha ha!
After bike riding we headed to the beach. It was a beautiful day, breezy but nice and even though the water was freezing Colby and Dave went in. Then Colby decided to build a huge sand city while Hannah meanwhile took a siesta.
Great day and a fun weekend. This coming week will be busy, Hannah has her last day of Round 6 chemo as well as a two part/two day MRI. I feel the PMS (pre MRI syndrome) coming on already! Of course we're hoping and praying for good results, and likely won't hear anything until the following week as long as all is good. Grandma and Grandpa will arrive on Saturday to stay while Hannah and I are in the hospital for 6 days at the beginning of October. Hannah has requested they bring her new favorite cookies with them-wedding tea cakes (from Grandma Kochvar, minus the nuts). She is really looking forward to that and having a few days with them before she goes in.

xoxo Kim

Last night was such a fun night for us. We went to dinner with a special group of women "Hannah's Hurrying Heroes".

While still in Boston, I received a call from a lady from Cutchogue I had never met. She read about Hannah in the newspaper and wanted to do something to help. Her idea was to get a group of women together to complete a half marathon/marathon in East Hampton to raise money for Hannah. Since that time, Donna compiled a group of 9 strong women who will be in East Hampton next weekend together. Hannah named the group, and picked out the color of the shirts too. Eight of the women are completing the half marathon, and Donna is doing the full marathon. They have worked long and hard, training and fundraising and are just an amazing group of women. Some of the women we knew, and others we had never met. They had never even met each other. They are pictured below with Hannah in their race shirts. From the left (minus Danielle) are Kelly, Josephine, Debi, Gretchen, Melissa, Donna, Virginia, and Stephanie with Hannah. Hannah and I hope to be there at the starting of the race next weekend, if all goes well. We want to sincerely thank each and every one of them for their hard work and dedication. We are so touched that they would give of their time and hearts to do this. You are all heroes in our book, and we love you all!

GO HANNAH'S HURRYING HEROES!

xoxo Kim

Another day of chemo done, almost done now with Round 6. Hannah did well yesterday with only mild stomach upset. I spoke to the doctor about her counts, because each week they are lower (her whites), but it's normal and to be expected while getting chemo each week. She tolerates this round well, so no shots or transfusions are expected.

I was so proud of her when she got accessed. She was a bit calmer, with not as much fighting and resistance as before. She still was a little upset and really uncomfortable having it done, but at least they couldn't hear her out in the hallway. Maybe it had something to do with the very loud and very long scream we heard before she was accessed. She looked at me like WOW! that was loud. I asked her if she was planning on doing that when she got accesssed and she just gave me one of those "mom" looks.

Dave came in to clinic at noon to stay with her, so I could come home only to head back out to the city for my annual bus trip to see the Yankees with friends (sorry to all of our Boston friends, but they won BIG!). She put up a bit of a fuss when I left, saying I had to be there for deaccessing, but she didn't really seem bothered by it. It was a good day anyway for Dad to be there since members of the NY Jets football team were in visiting the hospital. Here is a picture of Hannah with #70 Mike Devito and #35 Manny Collins (had to look him up on the practice squad roster).

When I asked Hannah about the Jets visit this morning, she said "I don't know who they were and they didn't say one word." She also said you can't see her IV pole in the picture because she put it behind them so it wouldn't show. Pretty tricky. It is nice when they have people come in to visit, does help to break up the monotony of the whole thing. She seemed to enjoy it.

Next week is her last chemo treatment for round 6 and she also has a two part MRI on Tuesday and Wednesday, full cranial and spinal, so she has to miss 2 days of school (Hannah smiles). She is enjoying school, and says she would rather be there than at clinic!

xoxo Kim

Another day of chemo behind us. Hannah did really well with no major complications, just a slight stomach ache. Her counts were about the same as last week, some low and some ok. Her energy remains good, and she went back to school today for the entire day. Yesterday afternoon when we got home, she even wanted to bake cupcakes, so we baked and frosted them. She took some into school today for the teachers, nurses, and some of her other favorite people.

We were a bit disappointed when her onocologist advised against soccer and gymnastics-not because of the germs, but because of possibly low platelet count which could cause serious internal bleeding if even bumped a bit. This will really become an issue on Rounds 7 and 8 (especially 8). So, she may "work" at the gym while her sister is in gymnastics class, and we'll have to lay off horseback riding a bit also. In the meantime, I'm still trying to convince her that karate is not just for BOYS!

The girls have Thursday and Friday off from school for Rosh Hashanah, and we have a few birthday parties to attend. Looking forward to seeing our cousin Sarah over the weekend for her "half sleepover party."

Meanwhile, our other patient in the house went for an epidural injection of cortisone today, and is has helped him somewhat, although still a long way to go to get to painfree. But, he is up a bit and out of bed, a big improvement from the last few days. He gets another shot in a couple of weeks. Just hoping to avoid surgery.

We said prayers tonight for our friends Jacob, Alec and Nicholas, fellow cancer friends we have met so far on this journey. Please keep them in your prayers too.

xoxo Kim

It's been a week of ups and downs this week. School started, and all has gone well there. She has been more tired than usual, getting used to her new schedule.

Hannah had 2 headaches this week. The first was Monday night when she was going to bed. She said her stomach felt funny and her head hurt. After calming ourselves down, we decided not to call the doctor, it was one headache, not accompanied by vomitting, and at night. She had another on Thursday night. I emailed the doctor that night and called him the next morning. He felt that it didn't have the characteristics related to the tumor or hydrocephalus, but if she had another, we would look into it more-probably with an MRI. She is scheduled for an MRI anyway at the end of this month. No more headaches to date.

She hasn't been eating well since her chemo last week. She only seems to get hungry enough to eat well for one meal of the day. So, her weight will remain stable anyway and she shouldn't lose any hopefully.

This morning she also complained of a sore throat. She said it started yesterday, but she didn't tell me. She didn't have any other symptoms. It was really bothering her this morning, but she didn't want to miss riding today since she hasn't been in a couple weeks. Dad made her soup for breakfast and then she did her mouth care-it's a mouthrinse and a lozenge that she has to do 2-4 times a day-and said it felt a bit better. It could be mucositis again-throat sores and irritation caused by chemo. She had this her first round of chemo, and it's not pleasant for her. It is quite painful, and you can't eat because it is so irritating.

On the upside, she did make it to riding today. She did really well and had fun. She also went bike riding yesterday with Dave and Colby and she can now ride her bike by herself again without help! She said she wants to show me tomorrow, so that's what's on tap for tomorrow.

We spent some time at the ER this afternoon-this time not for Hannah. Dave hurt his back this morning working in the garden, and was in so much pain by the afternoon, he asked to go (so you know it had to be bad.) A couple years ago he had an MRI that showed 2 slightly bulging disks, and hip degeneration and every so often it gets irritated, but never quite this bad. They gave him some pain meds and told him to see an orthopedist, so we'll try to get him in next week. Hannah was happy not to be the patient for a change!

That's all for now-and that's enough!
xoxo Kim

Today was first day of school around here. Both Hannah and Colby were somewhat nervous, and not ready to see summer end yet. I really didn't know what to expect from Hannah when we got there, but she was happy to see Mrs. W, her aide. It made all the difference, and she waltzed off to her classroom with Mrs. W and Charley before everyone else came in. Hannah made it through the whole first day, just a little tired around 1pm, and asked to come home. But, she rallied and stayed with the class. She was a bit tired when she got home, but immediately went to work on her first day of "homework", which was one simple sheet.

Tomorrow the school nurse will come in to talk to the class about cancer, to ease some of the fears from kids who have not heard of it before. She will present some information, it will give the kids the opportunity to ask any questions and we will show a Peanuts video (that was also shown to her class last year). Hannah asked if we could do this, since she was a little apprehensive about starting school with this year with some new kids in her class. I will go in also, in case there are questions that Hannah needs some back up on. She seems to be looking forward to it.

We both made it through the first day, although I'm wondering if her day was easier than mine here at home alone!

xoxo Kim

Hannah started round 6 today at the clinic. All went well, and she experienced no symptoms. They also gave her another drug, an antibiotic to reduce the risk of infection from pneumonia. She hasn't had it yet during treatment, and the details were a bit sketchy today, so I will speak more with her doctor next week about.

Tonight she broke out with a rash on her chest and stomach. I called in just to be sure, and we're just watching it for now, no other symptoms. It's most likely a reaction to the antibiotic.

Her white counts were quite a bit lower than last week, reds looked good. Not too low to get the chemo though, so one week down out of the four. We'll see how the counts look next week.

Hannah also received a package this week from her friend Jake in Chicago. It was a group of cards from his class last year of 3rd graders with well wishes for Hannah. We had quite a fun time reading through all of them. Some of our favorites were "your heart and soul are valiant and so are you", "I have a pet hamster that bites me", "I'm sorry about your brain" and "I am very sympathetic in your illness" and many other fun cards. She loved getting those, thanks to Jake and Sue!

xoxo Kim

We're arrived back home yesterday from our brief trip to PA. We all had a good time getting away for a few days. Colby rallied through a very bad sore throat (of course better since we were on our way home!) and Hannah didn't catch anything from her.

Here is picture of Hannah and I hiking at Bushkill Falls, PA. She did pretty well, only had to be carried for the second half of the trip, mostly uphill.

Our next day we were off to Hershey. We spent the whole day there, left the park at 9pm, so everyone was tired. Here are Colby and Hannah with a 5 pound chocolate bar (I was tempted, but didn't buy it!) So we're enjoying these last couple of days before school starts here on Thursday. Hannah will go full days this year, as long as she is not in for chemo or home due to low counts. We go in for the beginning of Round 6 tomorrow, so she will get chemo for the next 4 Tuesdays in a row, then only the final 3 rounds left. We can't wait.
We wanted to also say thank you to our friend Melanie from East Hampton who sold bracelets she made to help Hannah raise money for charity. Melanie worked very hard, and raised $90! WOW!! What a great idea. Thanks for all the hard work!
xoxo Kim

Just a quick update from Pennsylvania! Hannah went to clinic on Wednesday and all was good, so we decided on a quick trip to Pennsylvania before school started. Her counts on Wednesday were the best I have seen in quite a while, she is feeling good! Today we went to Bushkill Falls, it's a state park with amazing falls and did some hiking. We just arrived at Aunt Rosemary's house in Mechanicsburg and will still here for two nights. Tomorrow we will hit Hershey Park for the day. Then it's back home on Sunday.

Colby has a pretty bad sore throat, so we are keeping her isolated until she starts to feel a bit better, doc said it's a virus. Hopefully she'll feel good in time for Hershey tomorrow.

Hannah also wants everyone to know that she lost another baby tooth this week (with a little help from Dr. Hoeg.) The tooth fairy arrived overnight with $5 and stickers.

Hope everyone is having a great Labor Day weekend,

xoxo Kim

Happy to report that we are home from the hospital. Hannah's ANC shot up to 5,900 (some sort of miracle I think) so we already had our bags packed when the doctors came around in the early afternoon. I had to give Hannah one more shot at home tonight, to ensure her white count wouldn't crash again. We go back to clinic on Wednesday for a follow up check on everything, then her next round of chemo starts on the following Tuesday, two days before school starts.

This week we are going to try and get in some rest and relaxation before school starts. We have to go to clinic, go in for an audiogram, dentist, pediatrician for annual physicals, meet with Hannah's teacher and between all of that, maybe a little time at the beach if the weather cooperates.

Glad to be home! xoxo Kim

For those of you that didn't know Hannah "before" I thought I would post some old pictures. I have seen other websites with older pictures and it's interesting to look at the kids and their wide array of photos.

One of Colby's creative pictures, here is Hannah in the back seat of the car, 2006


Hannah and Colby, first day of school, 2006. Hannah saw this photo the other day and said she looks "so cute in pigtails"
Hannah at a 4H Horse show with Mystery, November 2006

Hannah in Brownies, making her graham cracker gingerbread house. Before she was diagnosed, she often wore hats, and now we wonder if it was due to the tumor

We are still here at least for another night. Hannah is feeling well with no fever, however her counts are still too low for her to go home. She is still receiving the antibiotics, due to her low counts and chance of infection and still receives the daily shots to boost her ANC (which is now up to 150). We have to get up to 500 to be discharged, so we are hoping for tomorrow, but chances are still pretty slim.

We spent 2 1/2 hours in the playroom this morning doing crafts. Dave and Colby came up and spent the afternoon with us. The girls finally got to see Jaws, the movie in the hospital this afternoon. We had not let them watch it up until now, but they happened upon it and watched it with us. I had forgotten how boring it was in between the "good" parts.

Hannah said "one more day was ok" so hopefully it will be tomorrow. We'll keep you posted.

xoxo Kim

Last night Hannah's counts all bottomed out, so now everything is low. Her hemoglobin dropped so much in less than 24 hours, that I had them run another blood check to be sure the results were correct. They came up a little bit, but she still needed a blood transfusion today. She just finished with that, it takes 4 hours, and she is doing well. She is acting fine and looks good, just not eating very well. Her first 24 culture showed no bacteria, so we have to wait for one more to come back negative before we can go home. I asked the doctor today if she was negative for bacteria but her counts were still low if we could go home, and he would not answer me, just saying that he wanted to be sure we didn't have to come back in the middle of the night. So, I'm not at all sure that we will be leaving tomorrow. Her ANC probably has to come up to 500 at least, and she is at 10 right now.

We were able to see the folks from Smiles for Scott Foundation today. They came around with the candy cart and Hannah and I were so happy to give them a check for $400 from the bake sale proceeds (Grandma and Grandpa rounded it up to $400 for Hannah.) Scott's Aunt and Grandmother were here with the cart, and they were so appreciative and happy to receive the donation. It was a great moment and Hannah was very proud.

xoxo Kim

Hello from the hospital. Hannah awoke this morning with a temp of 100.7. Doesn't seem high, but anything over 100.4 and it's an issue for chemo kids. I waited awhile and tried to get it to come down, but it seemed to hover around 100.5-100.7. She really didn't feel well, was complaining of stomach pain, and wasn't eating. Knowing that her ANC to fight off infections was only at 50 on Tuesday, I called and they said to bring her in right away. When we arrived at clinic about 2pm, she didn't have a temperature! I was ready to walk out the door, until they brough in her new counts, her ANC is now only 8! It might as well be zero, she has no ability at all right now to fight off anything. I tried to convince them to let us go since she had no fever, but with counts that low, they said she would almost surely be admitted through the ER in the middle of the night. We didn't want that, so here we are.

It took us about 6 hours to get up onto the floor and into her bed. She is now sleeping, and it's a good thing because it's about 20 degrees in our room-our roommate likes it cold! We will most likely move tomorrow if we can arrange it. We have to wait for 2 negative cultures in a row, they take one every 24 hours. So, if nothing shows up the earliest we can leave is Saturday evening. Her temp did go back up tonight slightly, so we'll see what happens. The one positive is that her hemoglobin is still not under 8, although it's lower than it was on Tuesday, and her platelets are lower too, but on the very low end of the range. So, that means she still does not need a blood or platelet transfusion, which we are thankful for.

One other positive to mention is now that we will be in the hospital for the Friday afternoon candy cart rounds from Smiles for Scott, we will be able to present them with the donation in person from Hannah's bake sale. I hope Scott's mom will be here, so Hannah can give the money directly to her. We're both looking forward to it.

We'll check in again when we have some more information.

xoxo Kim

Hannah completed her last day of summer tutoring today. I can't believe it's nearly the end of summer here. Her teacher said she is very well prepared for next year, so she will start the year off on a very good note. She is excited to be in Mrs. Wheaton's class (and we all love her too, Colby had her for third grade.) I will meet with her next week to go over some issues. I have prepared some information for her regarding side effects from radiation and surgery, what some of Hannah's needs and strengths are as well as give her a history of the situation, and an idea of where Hannah is now. Hannah will continue to miss school for chemo, doctors appointments, etc. but hopefully less than last year. She will be attending all day for the most part when she is there (last year when she returned, she was only able to do half days.)

Hannah will have a full time one-on-one aide for school to help her physically and academically while she is still on treatment for the rest of the year and then we'll go from there based on what her needs are. That makes me feel much more comfortable leaving her at school, knowing that someone will be with her at all times for support. School can be very fasted paced at times, so it ensures Hannah is safe and secure. We had the company come and pick up Hannah's wheelchair last week since she no longer needs it, yeh!

We're laying low today, trying to stay away from germs and most people! We're hoping the weather gets nicer so that we can enjoy a few beach days before we start back in September. We are also now working on getting Hannah's Cans 4 Cancer up and running. We have our first $3.20 in our collection, Hannah went tonight with Dave to the recycle center. I'm working on some artwork with Hannah and we will have more information on the blog soon about how you can donate your cans locally, or recycle where you live and donate to the cause also.

xoxo Kim

We're back from clinic and barely escaped a hospital stay. Hannah's counts were mixed:

WBC 1.67 very low, range is 5-14.5
ANC 50 very low, should be 1500-7000 or higher. This means she is very susceptible to infection
RBC 2.63 low, range is 3.9-5.3
HGB 8.91 pretty low, range is 11.5-15.5
Platelets 165, in the low end of range

The doctor was surprised that her platelets and hemoglobin were still ok. Not so surprised that her ANC is low. If she had had any kind of fever at all today, we would have stayed (that's what happened last time). So, she is back on the daily Neupogen shots through Saturday. Hopefully this is her nadir for all counts, and next week she won't require a transfusion or more shots. It's hard to tell right now if she is on her way down still, or recovering on her counts, since they don't test daily.

Her doctor also wanted to give her another booster shot to help raise her hemoglobin, since it's pretty low. On Monday, if her hemoglobin is much under 8, she will need a transfusion. However, I presented him with some data that I had found which shows in a pediatric study that the drug they use to help with chemo induced anemia may boost cancer cells, increasing her risk of recurrence. The doctor found the information trustworthy enough to NOT give her the shot today, and he is looking into further information published on this drug. The articles say that if this is indeed the case, then it's preferred to hold off on the shots and just give the kids the transfusion. For now anyway, she's not getting the shot.

So, right now we have to be super careful about infection. She will start the shots tonight, so they will immediately help her (unless she's still her way down). Here are a few shots of us at the aquarium yesterday (which we won't be doing for awhile, too many people).
She's been asking to go to the aquarium all summer, so we finally went yesterday. Who knows what her counts were yesterday, and it was crowded!

xoxo Kim