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
Monday, July 30, 2007
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
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
Sunday, July 29, 2007
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
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
Wednesday, July 25, 2007
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
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
Tuesday, July 24, 2007
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
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
Sunday, July 22, 2007
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
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
Saturday, July 21, 2007
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
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
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