Hannah's Test Site

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

Hannah continues to do well, she feels good, just a bit tired, but that's it. Yesterday we actually stayed home and did things around the house. The girls both made "stores" outside (just another way to bring stuff outside and sell it to your mom and dad for lots of money.) Meanwhile, it took me hours to pick all the ripe tomatoes in the garden. Every year I take a picture of the girls with the tomatoes, this year has been a good year. This is not our first big pick either, we have already given away bushels to friends, and there are many more green ones on the vine. Colby and Hannah won't even eat tomotoes (but love pizza and spaghetti sauce, oh well.)
Hannah is also getting ready for the upcoming lacrosse season. She did really well practicing with Dave, she was able to catch and throw the ball without problem. Now running with the stick while tossing or catching, and being able to fend off defenders is another thing all together, but she's on her way (and it's really good therapy for her.) Here she is:


Tomorrow we go to clinic, so it will be interesting to see what her counts are. Colby is going with us, so Hannah is happy about that. We told Colby she could do the finger stick, but after a few hours of agreeing, Hannah finally said "mom, it won't be MY blood, duh!" We'll report back tomorrow.

xoxo Kim

What a fun day! Hannah started her bake sale today at 8am. By 9:50am we had sold out everything. Hannah earned $372 for charity today, to give to Smiles for Scott Foundation and Spaulding Rehab hospital. Here is a picture of Hannah at her sale, after she had already sold most of her goods. Check out the "Hannah's Amazing Foods" sign! So many wonderful people came by to buy things and make donations, it was so heartwarming. Thanks to everyone who stopped by, and to our friends Erin and Kerry that made yummy things to add to the sale.

I know that her counts are on their way down, and it will take about another 10 days to reach their low, but right now she is doing great. Her energy level is good, but she gets tired easily. Other than that, she is doing well. We go back to clinic on Tuesday, so we'll get an idea of where she's at.

xoxo Kim