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

A pretty uneventful day today. Hannah and Colby had an orthodontist appointment. Hannah was referred by her dentist, since she will probably need a palate expander like Colby. The ortho doc said not until next year, which is when I would have done it anyway, after treatment.

Hannah was in good spirits today and had quite a bit of energy until early afternoon, when she got pretty tired. These last couple of days she has complained of being hot (I'm thinking due to the chemo, since she is usually freezing cold). I am reducing her anti-nausea meds tomorrow, to see how she does, hoping the chemo is passing through and out of her system by now.

The bake sale for Saturday is ON! Tomorrow we are spending the day baking and finalizing everything. So, if you live locally and want to come by, we will be on Love Lane around 8am.

xoxo Kim

Done with Round 5! It's always a good feeling when I can go on the website and change the chemo schedule to show another round is finished. Today was pretty much more of yesterday at the clinic. We watched a couple movies and Hannah took a good nap. She really hasn't eaten anything these last couple of days, especially today. She had 4 small cookies around lunchtime, and some corn tonight, that's it. I still have her on the appetite stimulant, but right now she just doesn't feel very well.

I checked back on our other rounds, since we have had these drugs once before and now I have something to compare it to. Last time, this was probably the hardest of the three cycles for her. She ended up having a blood transfusion, then very low counts and in the hospital with an infection. The doctor already mentioned the platlet and red blood transfusions, as he expects that she will need them, next week or the week after. Chemo is cumulative, so after each round, it's more difficult for her body to recover again.

We're still hoping for this weekend for her bake sale, but it's going to depend on how it goes the next few days. She is very happy to have Colby back from her visit with the Graebs for the last 3 nights while she was getting chemo. Colby does help to boost her spirits quite a bit.

Hannah has one more night of hydration tonight, then tomorrow as long as she can drink and/or eat and keep it down, I will deaccess her port here myself. I've done it once before, not really my favorite thing to do since it involves holding the small port located inside her chest with one hand, while yanking the needle out with the other, but there is worse. I'm sure Colby will be the official helper/distracter like she is for Hannah's shots.

xoxo Kim

Today was finally the day, Hannah started Round 5 of her chemo. It was a fairly normal day in the clinic, she was accessed with much fear and resistance, even more than usual I think due to the fact that she hasn't been accessed in quite a while. After everything got settled, she started her chemo quickly. We had to have 4 hours post chemo hydration due to the effect this drug can have on her kidneys. She watched a video, played some video games, took a nap and ate some pretzels.

We arrived back home about 5pm. She slept a good part of the way home. She is feeling generally sleepy and not up to par, but no sickness. I started her hydration about 6pm, and we're having a sleepover tonight in the living room. This hydration runs until 6am, at which time we will get up and leave again for the clinic. It is two very long days in a row, but better than being inpatient.

xoxo Kim

Another day in clinic today with NO chemo. Hannah's counts checked out fine, even on the high side due to the shots and passing of time. However, when we saw our doctor's assistant today, she informed us that because Hannah had a shot last night she could not get chemo today. Needless to say I was pretty unhappy, since we were told by another doctor last week to start and continue the shots, with the anticipation of getting the chemo today. According to Hannah's protocol, her counts have to be at a certain level without the shots for 2 days in order for her to get the chemo. I was aware of this, and even questioned the doctor last week, but was told all was fine, and to go ahead with the shots, come back on Monday.

Again, Hannah was smiling, and we left. As she told Grandma and Grandpa today, the doctors were "all mixed up", so she didn't have to stay. However, tomorrow we will be all set up for the chemo, and will receive it Tuesday and Wednesday. The process is quite lengthy, we get there about 8am, won't leave to late afternoon, even though the actual chemo only takes one hour to administer. It's all the hydration pre and post chemo to protect the kidneys.

I'm going in now to change our chemo schedule on the blog, maybe that will make it a "go" for tomorrow.
One other issue we have to mention of course-the Yankees. I'm sorry to our favorite Boston friends-Mr. and Mrs. "hat man" but we are doing the happy dance here! Dave informed us tonight that the Yanks and Sox have to play each other in two more series this year, so that will be the real test, but they are really coming up quickly! Are any of our Boston friends out there going to the games in Boston? Let us know and we'll look for you on tv! Hannah wrote Derek Jeter a thank you note last week, and she is still awaiting his letter back (ha!) with tickets for her. I know he's nice but..... To answer your request, we might be able to talk Hannah into wearing her Boston hat-around the house :)

Will report again tomorrow with hopefully happy news from clinic!

xoxo Kim

We go tomorrow for another try to get in round 5 of Hannah's chemo. I have been giving her the daily Neupogen shots since last Thursday, so hopefully her counts are up. She is already protesting being accessed tomorrow. She did admit tonight that it doesn't hurt to access the port, but she can feel the needle going into the port. It's just an unpleasant and stressful situation for her still. She is getting so much better with the daily shots I give her at home. We have a routine, and she goes through the process each time, but no more screaming and thrashing.

We were all busy this weekend, and the weather was beautiful. On Friday, we went to the movies with Mary Kate and Charley. After setting everything up, the thought occured to me that this was one of the worse places for someone who is neutropenic, since it is an enclosed place with many people-GERMS! I agreed to let her go if she would wear a mask into and out of the theatre. To share in the fun (ha) I wore one too. Wonder why there were so many people staring at us?

Hannah and Colby both had horseback riding on Saturday. Hannah was persistant in telling me and the instructor that she wanted to cantor (go much faster) on her horse, but they decided to save that for another day. Instead, they were walking and trotting over poles on the ground-enough to give a mother heart failure, that's for sure. She looked very good, and stronger than the last time she rode. We headed out to a local beach for a bit of afternoon relaxation, and Hannah fun in the water and a quick nap on the beach.



Today we made the trek over to the ocean (Westhampton Beach). We saw several other friends from the North Fork over there. The water was fairly calm and the day was beautiful. The highlight for me was watching Hannah chasing seagulls. She was running! At that moment, you would never have known everything she's going through.

xoxo Kim

Very strange day today at clinic. Hannah's platelets came back at 101,000, which is what we were hoping for, but to our surprise, her ANC (part of the white blood cell count that fights infection) was only 275 (should be 1500-7000). The daily shots she was taking at home were to boost her ANC, and since her counts had been satisfactory, although on the low side on our last 2 visits, they stopped them. None of us knew that her ANC was still on it's way down. Anything under 500 and you are at quite an increased risk to get an infection, so that is our priority right now. With her ANC so low, she could not get the chemo. I was disappointed and she was pretty happy. Happy until she heard the word "shot".

We go back to clinic on Monday and hopefully all of her counts will be in good shape. Until then, I will give her the daily Neupogen shots to boost her ANC. The doctor also said it would give her blood a little more time to rebound, since everything is still pretty low. This means that her chemo schedule changes. They do not make up the time by doing the next cycle as planned, because the spacing is important as far as killing the cancer, and the body has to have time to recover, even more so than early on in her treatment.

So, not what we were hoping for, but she will be able to get her next dose with little delay. She came home and slept for three hours this afternoon. We'll be laying low this weekend, it's important to stay away from crowds, sick people and germy situations so as not to get an infection like the last time her counts were low. We'll most likely be here baking for her bake sale, to happen probably next weekend (depending on how she's feeling.)

xoxo Kim

Today we began preparing for Hannah's "big" bake sale. Of course, Hannah wanted to make cut out cookies, which have to be rolled out, then cut with cookie cutters, then decorated! We made 4 batches today and it just confirmed for me how old I am quickly becoming. We have about 6 different things that we are making for the sale, so we started with the hardest. We hope to have everything ready by next weekend. I will keep everyone updated here. This was really the highlight of her day, asking multiple times when we could start, then asking when the dough was ready, then asking how much of it she could eat. The thought occured to me that eating raw cookie dough wasn't the best idea, but her white blood counts are good, so it shouldn't be a problem. Here are a few pictures of the cookie machine at work.


We spent a little time swimming again today at the neighbor's, which the kids really enjoyed. Hannah seemed to be pretty tired today (lots of cookie yawning.) I can't imagine that her counts will be high enough on Thursday, but I can't predict things, and will continue to think positively and see what happens. She knows that we are going for chemo on Thursday, and tonight was very upset again. Even though it's still a couple of days away, she is already anticipating the poke of the needle. We spent quite a bit of time tonight at bedtime talking about it, crying and trying to work through it. She just doesn't understand it and doesn't want to continue with all this (saying she is being tortured and it's not fair.) I just keep talking and trying to help her, trying to keep a level and calm demeanor myself. I'm now looking into other options to help her and in the meantime we'll keep moving forward, trying to find things like the bake sale and the can drive to keep her mind focused on other things.

Keep us in your thoughts for Thursday!
xoxo Kim

Hannah had some minor fatigue this morning, but was still up for a hike in the woods with Riley (dad carried her 75% of the way). At least this time is was fairly level terrain.

This afternoon we went over the neighbor's house for swimming, so she was very happy about that, because we seem to be the only house in the neighborhood without a pool! It was a nice quick cool down.

Hannah asked me last week to get a mirror so that she could see the back of her head and all of the hair she has growing. It was the first time she saw the scars from her surgery and reached out to touch them. It was a little upsetting for her because she really didn't know how it looked and didn't like the look of the scars. She did want to include this picture though on her blog of her hair and how much it's growing. It was difficult to get a good picture to post, so we hope you can see it. Her doctor said that this next round on this Thursday and Friday will probably make it all fall out, so she'll be back to square one, but for now she's pretty excited about having hair again and wants to show everyone lately. Sometimes it seems to grow overnight.

Hannah has also been talking of doing some fundraising. She has decided she wants to donate money to Spaulding Rehab Center (where she stayed during our radiation in Boston) and the Smiles for Scott Foundation. This foundation is a charitable foundation to honor the memory of Scott Loeb, a little boy who died at age 5 from medulloblastoma (what Hannah had). They raise money to try to make some days easier for kids with cancer. For example, they have donated dvd and vcr players for every room at Schneiders, a refrigerator for the families, and our favorite, the Friday afternoon candy cart. Two volunteers come around each Friday afternoon at the hospital and the kids can pick out any candy they want-a whole bag full of candy! The people are very generous and giving, and often times it is Scott's mom and aunt that bring the cart around. What a great thing. Link to their website is: HERE

Hannah REALLY wants to hold a bake sale, so we are starting to bake this week in preparation for a Love Lane bake sale. We also brainstormed another idea, and Hannah named it "Hannah's Cans for Cancer." We are going to collect bottles and cans that can be redeemed at the grocery store for money. We were inspired by an article in our local paper about a lady that has raised $4,000 by collecting cans and bottles. So, with that in mind, this is Hannah's new fundraiser. More to come on Hannah's Cans for Cancer. She is very excited about it and I am exhausted at the mere thought of it.
xoxo Kim

Another hot day today in New York prompted us to take the boat out for some tubing! Hannah did not go to horseback riding today, we thought it was just too much of a risk. If anything happened with her platelets so low, it would really be a bad situation. As it turned out, her class was cancelled anyway and she seemed pretty tired this morning so she didn't seem to mind. We took a vote for fishing or tubing, and the tubing won out. Here are a few pictures of the fun. The girls had never been tubing by themselves, they had always gone with Dave or I, so we were quite surprised when they both announced they wanted to try it by themselves (especially you know who.) A good time was had by all, and no one was catapulted from the tube, so it was a success. Maybe some fishing tomorrow!
xoxo Kim

The girls went to camp on Thursday and liked it! It was probably the hottest day of the year so far, but they did have a good time. When it came time to meet everyone at the camp and go off with the counselors, Hannah had a breakdown, crying and clinging to me. I completely expected it, so it didn't come as a big surprise to me. Hannah had always been somewhat shy in new environments, but it is evident that now she is even more so. She really wanted to be there, but didn't want me to leave. Everyone was as nice as could be, but it didn't matter if I wasn't going to be there with her. She and Colby were in the same group, because of their ages, but that didn't matter either. I finally peeled her off and left her with a counselor and Colby for roundup-where the camp kids come together for songs and chants at the beginning of the day. I stayed for a bit to be sure she calmed down. She said she had fun, except when they went swimming and she was put in a different group from Colby because of their ability. Other than that, they both had fun. We are going back for another day on Monday. She told me tonight that she is going to cry again, but I told her "no crying allowed after the first day." We got to see Jacob and his brother Ben at camp. We know Jacob from Boston, he was getting proton radiation when Hannah was, and was our next door neighbot at Spaulding. I spent the day with Nancy, Jacob's mom. It was so great to see them again.

We went to clinic this morning very early. I knew right from the finger stick that it would not be great news. Hannah bled a lot from the stick, much more than normal because her platelet count was so low (platelets coagulate your blood, so if they are low, your blood is very thin.) Counts were:
WBC 1.73 very low
ANC 1.16 low, but pretty good
RBC 2.61 low
HGB 8.41 low
Platelets 39,000 very low, have to be 100,000 for chemo next week

She was given a shot today to boost her hemoglobin. It won't boost her platelets, but if her hemoglobin goes up, it will encourage her platelets to follow. The only precautions we have right now are no contact sports or other activities that might cause injury because we have to be careful about bleeding, since she has trouble stopping any bleeding. She wasn't happy about the shot today, but she was more upset that next week, she will have to get hydration at home while getting chemo on Thursday and Friday. I told her the other option was to be inpatient for 3 days, and even though that was rejected, she still is upset about being accessed and being hooked up to the pump while at home. Part of it may be the invasion of her home space by the procedures that are usually reserved only for the clinic or the hospital. I think they may be a little easier to deal with because they aren't part of our "real life" here at home. Just a thought, sometimes hard to tell.

We go back to clinic on Thursday for chemo. As long as her platelets check out ok, we will get it Thursday and Friday. If they don't go up, she will be delayed until her counts come up. So, let's all cross our fingers that her counts will come up and we'll stay on schedule.

Hannah still has the tinnitus (ringing in the ears.) It is not debilitating for her, so we are still on for the full dose for chemo. There is no treatment for tinnitus and very little is known about it. We are moving her audiogram up by one month to ensure she is not experiencing any hearing loss prior to the next treatment which could affect her hearing.

Today Hannah recieved a whole box of new bandaids from girl scouts in service unit 48, senior troop 2949 and others. THANK YOU! We loved them and your timing was perfect. Hannah took off the bandaid from her finger stick and her finger started bleeding again (6 hours later), so she went to the bandaids and used 2 of them right away. It was so nice of you and we really appreciate it.

xoxo Kim

Hannah had her checkup today at the clinic. Her counts were:
WBC 2.36 (range is 5.0-13.0)
ANC 1650 (range is 1500-8000)
HbG 9.01 (range is 11.5-16.0)
RBC 2.73 (range is 3.90-5.30)
Platelets 75,000 (range is 140,000-400,000)
Her white blood cells and neutrophils are good due to the daily shots to boost them, but her red blood cells and platelets are low, because the shots do not affect those. She is due for chemo next week, but if her platelets don't come up to at least 100,000, it will have to be delayed. She still has 10 days to rebound, so we're hopeful that they will come back in the normal range.

She did really well today at clinic. Last night when she discovered we were only going for a finger stick, no other pokes, she said "oh that's easy". And it was quite easy, no big drama. The shot tonight was quick and less screaming also. We have to continue the shots until Friday, when we go for another check on her counts.

On the way home today we stopped at the Sunrise Day Camp, a camp for kids with cancer and their siblings. Our friend Jacob and his brother attend, and they really like it. Hannah thought it looked great, especially the 4 big pools they have, so I am signing them up and we'll see how they do for a day, then more if they enjoy it. I saw many other kids with no hair, scarves and hats today, so Hannah will feel right at home. Also, she will be able to stay with her sister, since they are in the same age group. Hannah is very shy now, and hides behind me whenever we go anywhere. I think this experience, if she can make it through the first day, will be good for her self esteem and independence. They are especially geared towards kids with cancer, and are so familiar with their issues and special needs, which makes me comfortable in leaving her there. I'll let you know how it goes.

Hi to Joe and Colleen who just got back from camping!

Here are a couple of shots of Hannah riding at IRIE, the therapuetic riding program sponsored for her by the East End Livestock and Horseman's Association. Thank you so much!


xoxo Kim

Hannah has been doing well, keeping busy with her tutoring, horseback riding, putt-putt golfing (once with Grandma and once with Grandpa) and now fishing. Her nausea from this last round is in check, and her energy level is pretty good. She has not taken a nap all week, and is doing a good job keeping up with her sister and everyone. She continues to get the daily shots and tomorrow we go to clinic to check her counts. She still fights the daily shots, but it has gotten a tad bit better, with less screaming, less delay and more theatrics then actual pain. I am assuming that we will have to continue the shots for a while longer, since her nadir (low point) is usually about 14 days out (they count it from the beginning of chemo, so that would be this coming Thursday). We'll see. I am purposely NOT packing a bag, so as not to jinx us into being admitted for any reason.

On Saturday, she started complaining of "noise" in her ears. I headed right away to the computer, to discover that tinnitus, or ringing in the ears, is a common side effect of cisplatinum (her chemo drug last week.) The focus of cisplatin is it's toxicity to the kidneys, hearing, neuro issues and blood levels. I had not yet read about tinnitus. Most information says it is common, and most often not permanent. Believe it or not, only 7% of people experience tinnitus from cisplatin. Again, Hannah is in that small percentage of people who get the uncommon reaction. I have already emailed her oncologist, to give him a heads up before our meeting tomorrow.

Here is a picture of Hannah in her garden. Notice the beautiful sign behind her "Garden of Hope" that was made for her by her friend Savannah's dad. Flowers are planted in front of it from the fundraiser back in April, and will bloom again in the spring. Hannah's sunflowers that we planted are blooming and beautiful. She had a strawberry to pick on her strawberry plant, and her other flowers are blooming and pretty. She enjoys picking the tomatoes in the garden with me, and they are just beginning to ripen.

For those of you that don't know, Hannah loves to fish. She and Dave and Colby went out today in the boat, after 2 days of trying, but the tide was too low in the creek to get the boat out. After a few hours, they came back with news of ONE FISH. Hannah caught a fish, a pretty big one, but Dad and Colby had nothing. Hannah still talks about the big catfish she caught at our family reunion last year at Aunt Susie's house when fishing with her cousins and sister (remember that Logan and Noah?)

Grandma and Grandpa left today to go back home. Hannah asked when we could go to their house again (she likes to go in the summer especially for all of that swimming in Mr. Tom and Mrs. Debbie's pool). I am hoping we will be able to go at Christmas time, chemo will be done and maybe things will settle down a bit then. One last photo, here are the girls with Grandma playing putt putt golf on a very hot day!xoxo Kim

I guess Hannah saved the best for last, Wednesday afternoon she started to feel a bit of nausea at the hospital, she got sick after we got home. We're still trying to flush her system with lots of water to get the chemo out of her body and be sure her kidneys are not affected. We started the shots at home today, with lots of fanfare and screaming. Even with the shots, her counts will continue to go down, maybe just not so far. We have to be careful now about germs, not going to crowded places, no one around with colds and lots of handwashing. The last thing we want is an infection that would send us back to the hotel!
We thought you might enjoy a picture of Hannah with her bandaid collection. Her latest edition to the collection are the Boo bandaids (Halloween) which we didn't have!! Thanks to the Mackins.

xoxo Kim

I have marked our chemo schedule as DONE WITH ROUND 4! We just received the all clear to go home and we'll leave around 4pm, when she is done with hydration. This round has gone very well for us, nothing crazy to report and we love that! She is tired and a bit run down, as a product of the chemo, but that is much easier to deal with than the nausea and vomitting.

She will have a lot of work to do with physical and occupational therapy when she gets home. Whenever she has her port accessed, she walks humped over with her left shoulder slumped way down, like a little old lady because she says it hurts to stand up straight and pull her shoulders back. After 6 days of walking like that, I know she'll need some time to adjust back again. She also doesn't really use her left hand or arm when accessed. Her arm is almost glued to the side of her body, again because of the port. She asked me if we could "make a deal" that while she was in the hospital and accessed that she could walk like that, and after she was deaccessed, she would stand up straight again. I think she was tired of Dave and I always telling her to stand up straight. So I made the deal with her. She is working with occupational therapy right now. She is working on 2 birthday cards for BT (brain tumor) kids whose parents are trying to get cards from every state for their birthday, pretty cool and she is enjoying that. Physical therapy came yesterday but said she needs more OT while in the hospital because she is doing so well with physical therapy that she is really out of their league! They really focus on kids that can't walk at all, or really have trouble with very basic things like sitting up, walking, etc.

So we are all packed and set to leave. Only one "black cloud" hanging and that is Hannah has to start on her neupogen shots before we leave the hospital to help elevate her counts. The doctor automatically started her on them this time, rather than waiting for her counts to go so low that she gets an infection again. Once she heard that, she was pretty mad because she hates those shots. I will have to continue them at home, at least through our next clinic visit which is Tuesday of next week.

Thanks again for your thoughts and prayers. xoxo Kim

Day 4 of chemo for this round, and Hannah continues to do well. We have not seen the complications that we did during her first try with this drug back in May. I'm almost afraid to even write it here, but she has had no vomitting, not even really any nausea. She also has not exhibited signs of the neuropathy that she did the first time. It could be quite possible that the Vitamin E regime we put her on exactly for this purpose is really working!

Only 1 more day of chemo on Monday, then we will be here 24 hours post chemo for hydration. We will go home on Tuesday evening hopefully. Dave and Colby came up today for a visit. Hannah was actually quite upset when they first got here. She and I had been working on some math from school, and she was struggling a bit, which really upset her. I gave her a break, then made her go back and revisit it to show herself that she really could do it (and she could). It just aggrevates her when she thinks she can't do something easily-that goes for anything including schoolwork, therapy, etc. She finally calmed down and they had a nice visit. Then, Aunt Josephine came up to bring the famous ravioli. Hannah ate three raviolis, although she wouldn't accept any of the yummy broccoli. Josephine brought up quite a smorgesboard of food, both from her and her mom and sister. Thank you so much, it really makes a difference. Grandma also sent up some yummy lemon cake, which Hannah refused to eat without sprinkles (and I told mom not to put them on it). Tomorrow Dave will bring up the sprinkles.

Nothing else to report right now. We moved today into our own room, a few kids have been discharged. It's nice to be in our own "suite" for a change. Last night I was awoken at 1:30am by a man tapping me on the shoulder telling me I needed to step out of the room. They brought in a portable x-ray machine to take an xray of our roommate. He covered Hannah with a protective cover, and I stood in the doorway while he performed the x-ray. Then he came back at 4am, and I thought he wanted to do another x-ray, but just wanted to confirm that the girl had a safety pin on the OUTSIDE of her shirt! When the surgeons came in to visit at 6am, I was still blurry eyed, and when the doctors came in at 7am, I figured I might as well bag it and just get up. So, for tonight at least, it's very calm and quiet. We'll see how long it stays that way! Well here comes the nurse with more meds!!!!!!

xoxo Kim

Hannah continues to do well this round. She has not had any nausea so far, attributed to the 2 anti-nausea meds she is on round the clock. She is very tired and emotionally volatile at times, but who could blame her.

We had a bit of drama this afternoon when I noticed upon our walk to the playroom for some glitter crafts that Hannah was a bit wobbly. I then had her walk the toe to heel line, and she did very poorly. I notified the doctor here-the resident-that she may be exhibiting signs of the neuropathy beginning, as she had with this medicine the first round. Although it was not significant, I wanted them to be aware so that it could be monitored. Well, the resident notified the fellow who notified the attending and next thing you know they were holding chemo for Hannah for today. I was NOT happy with this, especially considering the attending had not even bothered to come up and evaluate her. The fellow had not seen her either. This was all based on the opinion of the resident who admitted to me when I asked for her opinion, that she "was not experienced enough to know" one way or the other about Hannah's symptoms. So, to end this long story I told them I wanted to speak to either the attending doctor (who was now already at home) or Hannah's doctor before this decision to hold the chemo was made. The fellow arrived, watched her walk for all of 10 seconds and instructed the chemo to be given as scheduled. Oh boy! We will be keeping a close eye on this as she progresses with the last 2 days of the chemo to be sure the neuropathy is not getting worse.

Hannah got a visit from Grandma and Grandpa today, but after a bit of time was overwhelmed and lay down to take a nap. Colby and dad are coming up tomorrow for the day with some of Grandma's lemon cake. Up until dinner tonight, Hannah had only had 2 bites of peaches and 2 cookies. For dinner though she ate quite a bit of edamame (soy beans, so good for you and fun to eat!)and rice with butter. Reminds me of Boston, when this was her favorite dinner of choice most nights. Aunt Josephine is also bringing her famed ravioli, one of Hannah's utmost favorites tomorrow, so I'm sure she'll be eating that too. So many of these kids here have eating problems. The floor is full of kids who can't eat, and who spend much of their time throwing up. It's very hard to see.

Hannah's is tucked in for the night, and things are relatively quiet and calm for the moment, so I'm signing off for some sleep also until the next bathroom break.

xoxoKim

Hannah is resting comfortably. Her chemo is going as scheduled, and so far no nausea, just very tired and lethargic. Her appetite has really gone downhill since we got here, today she ate only 2 poptarts for breakfast and a bit of white rice for lunch, with a chips and salsa snack. No dinner. It's to be expected during the chemo, even though she's on Megace still. I heard her tell Grandma today to bring up some lemon cake with frosting tomorrow, so we'll see how that goes.

Her counts are about the same as yesterday, everything is holding stable. Today we spent some time working on the "100 projects kit" (thanks to Mary Kate and her mom) trying to make pom pom animals. Hannah was laughing out loud at the sorry animal we tried to make. It kept us busy for a while. Hannah was feeling well enough too to make a trip to the hospital gift shop to browse and check out everything there. We also got a visit from the Friday afternoon candy wagon called Smiles for Scott. Scott was a little boy with medulloblastoma who died at age 5 in 2005. He was treated here at Schneider's. His parents started the Smiles for Scott foundation, and this candy cart is one of the many many things they do to try to make cancer easier for kids. Candy day is a day all the kids look forward to in the hospital. Scott's mom is one of the volunteers who come around with the cart (which I find absolutely amazing and inspiring.)

Goodnight all, xoxo Kim

We're in the hospital now for Round 4. Hannah's counts this morning were low as a result of the last round of chemo, but they moved ahead anyway with the chemo. The doctor explained that this round will most likely be harder on her than previous, since the blood and bone marrow don't rebound as quickly because they have already been compromised by chemo and aren't as strong as normal.

WBC 1.68 (range is 5.0-14.5)
ANC 940 (range is 1500-7500)
Hemoblobin, RBC and Platelets all in normal range

It's been a long day for us, and Hannah is already sleeping. We arrived at the hospital this morning at 9:30am and didn't get into our room until 5:00pm. Until then, we were in the hall waiting for the bed. They didn't start chemo until 8pm tonight, so we waited a long time. It is very busy here on the onocology floor, and all beds (plus some) are full.

I told Hannah that our stay here this time is going to be a "craft bonanza." Already she has painted her own t-shirt downstairs and colored several pictures in her new horse coloring book that she likes very much (thank you to Mrs. Grossman.) She also worked a bit with the tutor today.
xoxo Kim

We just got back from Vermont with our cousins Kate and Lynsey and Aunt Paige and Aunt Kathleen. We were going, going, going all weekend long. Here is a picture of Hannah with Colby, Kate, Lynsey and Paige feeding the baby sheep at Adams Farm. Hannah had been waiting all day for that!

The next picture is the four of us on top of Mount Snow. Do we look tired and sweaty? We took the chair lift 2/3 of the way up the mountain and then hiked straight up the last 1/3. Dave did the brunt of the work, carrying Hannah on the uphills while I took her on the easier areas.

And lastly, here are the girls on one of their many smore making nights. Hannah must have eaten about 20 smores while we were there, then she had us make them again after dinner tonight. Lots of yummy calories! We also found the time to take a trail ride and do some fishing. Hannah took a few naps and held up very well, wanting to keep up with the girls.

It was nice to have some true "summer" time together before coming back to school, therapy and hospital visits again. xoxoKim

Done with Round 3!! We spent another full day in the clinic today, and now we are finished with Round 3. Today her counts were all acceptable (even if not in their normal range) and her weight was down by about 1/2 pound, not a big deal.

We have a short break until next Thursday, Round 4. We are now starting on the repeat of Cycles 1, 2 and 3 so now I know what to watch for with each cycle, compared to how she reacted the first time around. Her doctor pointed out today that Hannah tolerated this round much better than others with regards to neuropathy. He said it could be the vitamin E regimen we have her on. The telling factor will be our next round, again of cisplatin beginning next week for 5 days. If she doesn’t get the neuropathy exhibited quite strongly the first time around, the Vit E is definitely helping with that. We’ll see!

I would like to say that today was easier in the clinic, but it was not. Hannah is having a tough time lately, probably because she is so out of control of this whole process. Yesterday she ran screaming when one of the therapists arrived at our house. She refused to participate (I think it's all about control of what she does and when she does it, and she didn't want to do it!) Same with the accessing today, she is at a total loss of control over the situation. I can't imagine that it will do anything but get worse from here on in. She is very interested now in "how much chemo is left, how many days, when is our next chemo?" I am always honest and up front with her, but to hear "Thanksgiving" is tough for her, and a long way off. Thank goodness that otherwise, she seems happy.

Tomorrow is another full day of tutoring and therapy (even though she is insistent that we go to the aquarium.) Thursday we will head to Vermont for the weekend for some time with our cousins, the Prokops from Texas.

xoxoKim

We had a good weekend with Aunt Susie and Sydney visiting. We headed out to the beach on Friday and horseback riding on Saturday and a nice evening ride on the boat. Hannah continues to feel good, and is still on the anti-nausea meds. Today I gave her only one dose, and she did mention some stomach issues in the evening, so it's back to the 2 daily doses for the time being. Her counts are heading down slowly, but not drastically during this cycle. Right now she's at:

WBC 3.4 (white blood cells) low and out of range, but not drastic
ANC 2278 Good
HgB 11.4 low and out of range, but not drastic
Platelets 371 Good

She is still quite tired, no nap today, but went to bed at 7:00pm. This Tuesday is the last day in Round 3, yahoo! Then we have a break until July 19th (the 6 day inpatient stay). My mom and dad are coming out to stay for the week, so that will be a big help.

We received a nutritional counseling report from Dr. Jeanne Wallace courtesy of Meryl (thank you so much). I'm glad we went ahead with the analysis, the report does offer some comprehensive information regarding ideas on supplements and nutrition. I have yet to read the entire 80+ page report, but I am already interested in many of the suggestions. the report mentions several items I was already researching, and backs up the data I had already collected on many issues (like angiogenesis, inflammation, supplements, etc.). I'm collecting supporting documentation and will present everything to Hannah's oncologist for his review before I implement any of the complimentary strategies.

We heard from two of our Boston family this week-Audrey, the best childlife specialist ever and Nicholas-our friend from Spaulding. It was great to hear from both of you and look forward to making contact!

xoxo Kim

Well I think the chemo is again catching up with Hannah. Late yesterday afternoon after a good nap, Hannah felt sick and ending up throwing up. She naps every day and then actually got sick. I gave her a new anti-nausea med that seemed to help also. She rallied afterwards and felt well enough to go to the Ducks game to watch the fireworks, which were great! She was extremely tired, but did have fun. Here is a photo of Hannah, Colby and Sydney with Buddy Harrellson from the Mets '69 championship team, who is a part owner of the Ducks and was signing autographs at the game.


Success, today we made it to Build a Bear for Hannah's 8th birthday party. What a great place, everyone had so much fun, and they really made Hannah feel special.Her bear was stuffed with lots of love from all of her friends at the party. Lots of fun, and Hannah took a 3 hour nap after we returned! Here is a picture of all of the friends with their creations. Here is a photo of the party group, and Hannah and Colby with cousins Sydney and Sarah.


After two days of nonstop fun with cousin Sydney and Aunt Susie we are now going to take it easy for a couple of days for the rest of their visit. We're hoping the weather gets better so we can do some swimming tomorrow, then of course horseback riding and the street fair on Saturday.

I do like the suggestions on how to make the port process a bit easier. I know Hannah find that very interesting, and can't wait to read them to her. I'll let you know which of the ideas she likes the best.

xoKim

Another day of chemo down, and Hannah is doing well. The clinic was very crowded yesterday, probably because today was a holiday. Our appointment was at 9:30am with the doctor and they didn't start the chemo until after noon. She had a slight right eye droop again last night, probably from the Vincristine, but it appears to be gone this morning. Only one more day of chemo in this cycle, and then we start the three rounds over again.

We really talked a lot about accessing her port before she went, and she did slightly better this time from last week. She said that maybe eventually you don't mind it at all and they can just do it while you're laying there. Let's hope that day does come for her.

The tutor was with us yesterday at the hospital for about 45 minutes. Other than that, we played games, ordered and ate a pizza and played video games.

We're off now to the airport to pick up Aunt Susie and Sydney who are visiting for the weekend. Hannah asked me this morning what time the plane "dropped". Gotta go!

xoKim