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
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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