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
Sunday, August 26, 2007
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
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
Some Old Photos
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
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
Saturday, August 25, 2007
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
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
Friday, August 24, 2007
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
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
Thursday, August 23, 2007
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
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
Wednesday, August 22, 2007
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 gettingHannah'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
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
xoxo Kim
Tuesday, August 21, 2007
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
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
Monday, August 20, 2007
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
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
Saturday, August 18, 2007
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
Thursday, August 16, 2007
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
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
Wednesday, August 15, 2007
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
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
Tuesday, August 14, 2007
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
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
Monday, August 13, 2007
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
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
Sunday, August 11, 2007
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
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
Wednesday, August 9, 2007
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
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
Tuesday, August 7, 2007
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
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
Sunday, August 6, 2007
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
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
Saturday, August 4, 2007
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
Friday, August 3, 2007
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
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
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