We came home today from the hospital. Hannah didn't have any more swelling, although her right eye is just a slight bit off it seems. Her doctor said today that now we know that Hannah seems to be very sensitive to the drugs, so it's something we have to keep an eye on. We were home for only 10 minutes when I had to call the hospital because Hannah was flushed and had a temp of 100.3. Anything of 100.4 in chemo patients warrants an automatic trip to the hospital to be sure there is no infection. The doctors said to wait a 1/2 hour, and retest. I gave her a quick bath, and started unpacking and repacking our bag. Luckily, the temp went down, and it's almost normal now.
She is very tired, due to her blood counts:
WBC 2.31 Acceptable but range is 4.6-10.2
ANC 1917 Nearly normal, this is the level to fight off infection
HgB 9 Low, range is 12.2-18.1
PLT 78 Extremely low, should be 142-424
The doctor said these low platelet and red blood counts already indicate the need for a platelet infusion, and to be prepared to stay for that when we come in next week (it takes 4 hours minimum). Between now and then Hannah will be on G-CSF (Neupogen) shots at home to boost her white blood cell count. Unfortunately, it doesn't do anything to increase her platelet or red blood cells, those have to come back on their own.
A home care nurse will come tomorrow to instruct me on how to give the shot. If there is one thing that Hannah really does not like through all of this, it is all the pokes from the shots, IV's, and the port accesses. She was not happy today when they gave her the shot in the hospital, and I'm not quite sure how I'm going to be able to do it here. It took two of us today to give it to her. But, it's important she have them, to help increase her white blood cells.
It's good to be back home. Also, we want to say thank you to all of the people supplying us with such great food. I do not have emails for most of you, to email you personally, but we would like you to know what a big help it's been to us. Everything is so yummy!
xoKim
Thursday, May 31, 2007
Hannah woke this morning at 10am with pretty severe swelling in her face, especially the right eye. It appeared to be ptosis-which is droopy eyes, which can be caused by Vincristine. It was hard to tell, because the eyelid wasn't just droopy it was pretty swollen. This upset her because she had trouble keeping her eye open. Her eyes were functioning properly, but showed some right sided nystagmus again (a pulsating of the eyes at their peripheral limit), which she had after the initial surgery, but had gone away sometime ago. Vincristine effects usually don't show up until 3 days to 3 weeks after treatment, so it would be unusual for her to already be showing any side effects. But, she had unusual neuropathy with the cisplatin (our first dose) too, so it wouldn't surprise me.
Eventually the swelling dissapated and her eye looked normal again, by about 5pm. However, when she was weighed in today, she had gained one full kilo, which is 2.2 pounds. There is absolutely no way this could have occured due to her food intake because she is not eating much. Today she ate nothing until 5 pm at which time she ate one entire piece of pizza. She must subconsciously know what my mental breaking point is (although I try to hide it from her), because sometimes she seems to come right to it, then something changes. Her blood pressure is also up a bit. They gave her a diuretic to help flush out some of the fluid retention, which most likely caused the swelling and the increase in blood pressure, along with the weight gain. We'll see tomorrow if it worked.
Her spirits are pretty good still. She asked me tonight how many more times she has to do this. I was hesitant, but told her the truth, that is was 9 total, so 7 more, if we make it through the whole protocol. I told her she would be done by Christmas, and she thought that was a long way off. But we also talked about how she will be then able to walk and run again like she used to, without the balance issues and ataxia that she has now. After continued physical and occupational therapy and time, we hope that she gets back to where she was before the surgery physically.
Hopefully we will be discharged tomorrow night, around 7-8pm. We'll keep you posted!
XOKim
Eventually the swelling dissapated and her eye looked normal again, by about 5pm. However, when she was weighed in today, she had gained one full kilo, which is 2.2 pounds. There is absolutely no way this could have occured due to her food intake because she is not eating much. Today she ate nothing until 5 pm at which time she ate one entire piece of pizza. She must subconsciously know what my mental breaking point is (although I try to hide it from her), because sometimes she seems to come right to it, then something changes. Her blood pressure is also up a bit. They gave her a diuretic to help flush out some of the fluid retention, which most likely caused the swelling and the increase in blood pressure, along with the weight gain. We'll see tomorrow if it worked.
Her spirits are pretty good still. She asked me tonight how many more times she has to do this. I was hesitant, but told her the truth, that is was 9 total, so 7 more, if we make it through the whole protocol. I told her she would be done by Christmas, and she thought that was a long way off. But we also talked about how she will be then able to walk and run again like she used to, without the balance issues and ataxia that she has now. After continued physical and occupational therapy and time, we hope that she gets back to where she was before the surgery physically.
Hopefully we will be discharged tomorrow night, around 7-8pm. We'll keep you posted!
XOKim
Tuesday, May 30, 2007
Reporting again from the hospital, Round 2 of chemo started today. For this round, we only have 2 days of chemo. We're a bit disappointed in that we were told we would be here one night, but now informed that due to the hydration required, we need to stay for 24 hours following the last dose of the chemo, which will be tomorrow around 6 pm. Cyclophosphamide can be very damaging to your bladder so it is required. So much for our one night stay!
We did start off today on a good note, Hannah gained .2 kilos, almost half a pound from just last Friday (thank you Aunt Kathleen for all of those donut animal games over the weekend.) Her doctor then proceeded to tell her that it's ok if she doesn't eat during this round of chemo. I wanted to stand up and stop him, but what he was trying to say was that if she wasn't feeling great, it's better not to eat or to only eat a little, rather than eat a lot and throw everything up. It's just so difficult though to keep her eating, I wanted to stop him. For lunch I bought her chicken from the cafeteria (her request), but she quickly dismissed it, and had a rice krispie treat and ice cream instead. Lunch of champions. She ate a dinner of pasta with butter and parmesan cheese and root beer and just kept eating and eating, I was surprised! Her counts are all up to:
WBC 2.24
ANC 1390
HgB 11.2
PLT 137
All of these are at the low end of the range, or slightly below, but still all acceptable.
She started her chemo today with a shot of Vincristine and a dose of Cyclophosphamide. Tomorrow she will also get a second dose of Cyclophosphamide. All has gone well so far. Vincristine belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants and Vincristine is made from the periwinkle plant. This drug works on cells are they are dividing and replicating. Inhibition ultimately results in cell death, thus not allowing the cancer cells to grow (or the good cells either, but that's the case with all these drugs, hence the low blood counts). This drug has many serious side effects associated with it. Although the statistics say that few kids get neuropathy and some of the other serious complications, I know of many kids that have experienced them. It's a wait and see-usually they show up within a week of the shot. This drug is also cumulative, so as we move forward in her treatment, we may begin to see other side effects.
Cyclophosphamide (Cytoxan) is the other drug this time, it is an alkylating agent. Alkylating agents are most active in the resting phase of the cell, before they divide. All cells divide during mitosis, but cancer cells lose the ability to stop dividing and grow uncontrolled.
As with all other chemo meds, they expect nausea, loss of appetite and low blood counts. She will also most likely lose what little whisps of hair she is beginning to grow in about 3-6 weeks. That's temporary though and will grow back.
The nadir for her counts will most likely be about 7-10 days out, probably bottoming out on her birthday (next Wednesday) or the following day. I'm really hoping that she feels well enough next Wednesday so that she is able to go to school (even if only for cupcakes) and celebrate with the awesome jungle cupcakes we have planned for the class. Not only has she planned for the 21 students in her class, but also plans on another 20 "extras" for teachers, etc. I think she is giving one to every aide, teacher, etc. she knows, which is fine with me! The cupcake distribution is a big highlight for every second grader and she is carefully planning it.
Thanks for all of your comments on the blog, we read them tonight together and she tries to guess who they are from as I'm reading them. She really gets a kick out of them. Thank you also for all of the unique and wonderful bandaids she has received. Today she picked "bacon" for her finger stick, and she has all the nurses guessing what it is. It's a perfect distraction for her. The childlife specialist says that next they are going to make a bandaid collage and frame it, but I don't think Hannah will agree to give up any of her special bandaids for that.
xoxo
Kim
We did start off today on a good note, Hannah gained .2 kilos, almost half a pound from just last Friday (thank you Aunt Kathleen for all of those donut animal games over the weekend.) Her doctor then proceeded to tell her that it's ok if she doesn't eat during this round of chemo. I wanted to stand up and stop him, but what he was trying to say was that if she wasn't feeling great, it's better not to eat or to only eat a little, rather than eat a lot and throw everything up. It's just so difficult though to keep her eating, I wanted to stop him. For lunch I bought her chicken from the cafeteria (her request), but she quickly dismissed it, and had a rice krispie treat and ice cream instead. Lunch of champions. She ate a dinner of pasta with butter and parmesan cheese and root beer and just kept eating and eating, I was surprised! Her counts are all up to:
WBC 2.24
ANC 1390
HgB 11.2
PLT 137
All of these are at the low end of the range, or slightly below, but still all acceptable.
She started her chemo today with a shot of Vincristine and a dose of Cyclophosphamide. Tomorrow she will also get a second dose of Cyclophosphamide. All has gone well so far. Vincristine belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants and Vincristine is made from the periwinkle plant. This drug works on cells are they are dividing and replicating. Inhibition ultimately results in cell death, thus not allowing the cancer cells to grow (or the good cells either, but that's the case with all these drugs, hence the low blood counts). This drug has many serious side effects associated with it. Although the statistics say that few kids get neuropathy and some of the other serious complications, I know of many kids that have experienced them. It's a wait and see-usually they show up within a week of the shot. This drug is also cumulative, so as we move forward in her treatment, we may begin to see other side effects.
Cyclophosphamide (Cytoxan) is the other drug this time, it is an alkylating agent. Alkylating agents are most active in the resting phase of the cell, before they divide. All cells divide during mitosis, but cancer cells lose the ability to stop dividing and grow uncontrolled.
As with all other chemo meds, they expect nausea, loss of appetite and low blood counts. She will also most likely lose what little whisps of hair she is beginning to grow in about 3-6 weeks. That's temporary though and will grow back.
The nadir for her counts will most likely be about 7-10 days out, probably bottoming out on her birthday (next Wednesday) or the following day. I'm really hoping that she feels well enough next Wednesday so that she is able to go to school (even if only for cupcakes) and celebrate with the awesome jungle cupcakes we have planned for the class. Not only has she planned for the 21 students in her class, but also plans on another 20 "extras" for teachers, etc. I think she is giving one to every aide, teacher, etc. she knows, which is fine with me! The cupcake distribution is a big highlight for every second grader and she is carefully planning it.
Thanks for all of your comments on the blog, we read them tonight together and she tries to guess who they are from as I'm reading them. She really gets a kick out of them. Thank you also for all of the unique and wonderful bandaids she has received. Today she picked "bacon" for her finger stick, and she has all the nurses guessing what it is. It's a perfect distraction for her. The childlife specialist says that next they are going to make a bandaid collage and frame it, but I don't think Hannah will agree to give up any of her special bandaids for that.
xoxo
Kim
Monday, May 28, 2007
With no internet access for the past 4 days, I haven't been able to update you on Hannah. We are back home now! Since our last post on Monday, Hannah has been able to attend school a couple of mornings. Her energy level has been up and down, so it's been difficult to tell if it's from the radiation, or the chemo, or something else. Even though she went to school for half days, I had to pick her up early one day last week, she was just too tired to participate. She came home and slept for 4 hours. She is happy while she is in school and likes to be there and participate.
We went to clinic on Friday to get her blood levels checked, anticipating no changes, and hoping they had gone up. Since it was our first round of chemo, we didn't know what to expect as far as trends on her levels. She had lost more weight at weigh in. The doctor explained to her that it was her one and only job to eat, even if she didn't feel hungry, or they would have to try and stimultate her appetite with medication, which of course we would prefer not to do. If that doesn't work, then they look into tube feeding, which we really hope doesn't happen. There are different ways for her to get nutrition, either through a naso-gastric tube (NG tube through the nose into the stomach), PEG (percutaneous endoscopic gastrostomy) a feeding tube that is placed directly into the stomach or a TPN (total parental nutrition) -a way of feeding through an intravenous drip, which is usually only done while in the hospital. Obviously, none of these are great. They usually start to consider one of these options when a child has lost 10% of her body weight. However, Hannah started off with little weight to lose, so they will begin to consider other options sooner than the 10% threshold. She started off at 18.9 kilos (which is 41.58 pounds, you multiply by 2.2 to get the pounds) and she has slowly decreased that to 18 kilos (39.6 pounds) so she has lost .9 kilos/1.98 pounds. It's not drastic, but it is still disconcerting.
They drew her blood and she came back with:
WBC 1.77 Very Low
ANC 533 Very Low
HGb 10 Low
PLT 178 OK
I was so surprised when I got her results. They immediately gave her a shot of G-CSF (Granulocyte Colony Stimulating Factor) which is a medicine given to stimulate the production of white blood cells. This was the first time she needed it, and it wasn't quite expected. The doctor thought she was probably at her nadir (ie her lowest point) so he only gave one shot, and we didn't have to give them at home. We had planned a trip to Vermont for the weekend with Aunt Kathleen and Bill and were leaving right after Hannah's appointment. The doctor advised us to go, but keep Hannah away from crowds of people and anyone who was sick. He also wanted us to know where the nearest hospital was, and gave us special needles for her port in case she needed to be hospitalized at a place where they didn't normally access ports. This made us think twice about going. If she spiked a fever and we were not close to home, we were nervous about someone accessing her that didn't normally perform it, since it can cause complications if not done right. We did a little research, found out that the nearest hospital to us in Vermont was a cancer center, so we decided to go, and be very cautious about her activities and hand washing.
I'm glad we went, after making the nerve wracking trip up, thinking of all possible bad scenerios, we had a wonderful weekend, and all was absolutely normal. We built in plenty of rest time for her, and tried to get as much food into her as possible without being too obvious about it. We're trying to pack on the weight before she goes for chemo again this Wednesday.
So here are a few pictures from our weekend.
Hannah with a Doberman and a Spaniel at the Dressage Show at Saratoga Springs. She looks like she is enjoying the little one a bit more, don't you think? Besides the horses, they had a dog breeds display, so both Colby and Hannah were in heaven. Keeping her away from the people there was much easier than keeping her away from the dogs!
At the restaurant last night, the only thing she would eat was corn (this was her 4th ear of corn) and breadsticks. After dinner, she thought she was the waitress and went to ring up the bill. We hope everyone had a great three day weekend!
xoxo Kim
Monday, May 21, 2007
Hannah had a very busy day today. Hannah went to school today, for a half day. It was very difficult to get her up and motivated this morning. Again, it seems the radiation fatigue is still present. It doesn't seem to be a constant with her though. One day she will sleep until 11am, and the next she wakes at 8am. She still tires more easily than before, whether it's from the radiation or the chemo or both, I don't know. She was definitely ready to come home at noon when the class went to lunch and recess. Her tutor, Mrs. V then came at 1:30. Not knowing what to expect, I think Hannah was a bit reserved at first, but she really opened up by the end of the hour and was really enjoying it. Right now, she'll be working with the tutor 3 days a week, going to school 4 half days a week (Fridays she always has her clinic appointment in the morning), and going to physical and occupational therapy 2-3 times per week. And of course, her chemo schedule to follow. It will certainly keep her busy!
Hannah has also started a bandaid collection! I noticed a couple of weeks ago when she had to have her port accessed, that what distracted her the most was the bandaids the nurses had to choose from to put over it when they took the needle out. Even more than the big bag of candy I brought to distract her, the bandaids really helped. So, we decided to start our own bandaid collection. Every Friday, and also when she goes for chemo she either gets a finger stick, or her port accessed. Now, she will have her own collection of bandaids to help make it just a little bit easier. We have a travel container for them and a few boxes of bandaids in it already. After her clinic appointment last Friday, she asked me to stop at every bandaid place on the way home. After one stop she fell asleep in the car, so we didn't add that many to our collection. So, if you come across any unique bandaids in your travels, please let us know!
I thought you might enjoy this photo of Hannah. She gets very cold very easily, so this was her solution yesterday-earmuffs with a hat over them, crazy!
xoxo
Kim
Saturday, May 19, 2007
Today was an absolute delight as we watched Hannah make her first communion with her class. There is nothing quite like seeing all those little girls and boys dressed up in church together. Congratulations to all of the children today making their first communion. Here are a few photos of Hannah on her special day. Everything went great, and Hannah refused any help from us with walking-and there was a lot of walking all around the church. We were so proud!
xoxo
Kim
Which one should be my prom date? Hmm.......
Friday, May 18, 2007
All checked out well for Hannah today at her clinic appointment. Her blood levels were:
WBC (white blood cell count) 1.77 Low but acceptable Normal range is 5.0-14.5
ANC (Absolute Netrophil Count-measures her ability to fight infection) 1270 Normal range is 1500 plus, 500-1000 neutropenic, but not absolutely severe, will watch closely and can't be around crowds or other sick people
HgB (Hemoglobin-ability of blood to carry oxygen) 10.9 Normal Range is 10.5 and above, less than 8 is too low
Platelets (produced by the bone marrow, needed to repair body and form clots) 259 Normal range is 150-400, less than 20 too low
This outcome seems consistent with the drugs she was given last week. Her next round will be different, we will expect to see her levels drop dramatically and quickly, requiring shots to boost her ANC (which I will have to give her at home).
She is feeling good, just tires very easily now. She is back to her baseline before this first cycle as far as ability to walk, talk and move about. The doctor gave her a very good report today. She lost just under a pound since beginning the chemo. Her appetite is still very reduced. Today after clinic she ate half of a half of piece of pizza, but threw up everything outside after eating. She said she didn't feel sick, but was trying to get something out of her tooth. Her gag reflex is very high right now.
We are so happy that she will be able to make her first communion tomorrow with her class. We have her dress and her flowers, and I finally found her shoes, so we are ready to go. Now as long as her parents can hold it together in church tomorrow we'll be all set!
xoxo
Kim
WBC (white blood cell count) 1.77 Low but acceptable Normal range is 5.0-14.5
ANC (Absolute Netrophil Count-measures her ability to fight infection) 1270 Normal range is 1500 plus, 500-1000 neutropenic, but not absolutely severe, will watch closely and can't be around crowds or other sick people
HgB (Hemoglobin-ability of blood to carry oxygen) 10.9 Normal Range is 10.5 and above, less than 8 is too low
Platelets (produced by the bone marrow, needed to repair body and form clots) 259 Normal range is 150-400, less than 20 too low
This outcome seems consistent with the drugs she was given last week. Her next round will be different, we will expect to see her levels drop dramatically and quickly, requiring shots to boost her ANC (which I will have to give her at home).
She is feeling good, just tires very easily now. She is back to her baseline before this first cycle as far as ability to walk, talk and move about. The doctor gave her a very good report today. She lost just under a pound since beginning the chemo. Her appetite is still very reduced. Today after clinic she ate half of a half of piece of pizza, but threw up everything outside after eating. She said she didn't feel sick, but was trying to get something out of her tooth. Her gag reflex is very high right now.
We are so happy that she will be able to make her first communion tomorrow with her class. We have her dress and her flowers, and I finally found her shoes, so we are ready to go. Now as long as her parents can hold it together in church tomorrow we'll be all set!
xoxo
Kim
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