We are home now from the hospital, we got home last night. It was SO nice to spend the night in our own house, with no-one walking into our room in the middle of the night for vitals. Hannah had a good nights sleep, and slept until 11am this morning! We believe the radiation fatigue is now kicking in, like they told us it would, and that it will most likely last 10-14 days. She appears very tired during the day. Last night she had two helpings of noodles for dinner, but today she ate very little, even ice cream!
We expect that her blood levels are currently on their way down. Hannah was receiving Etoposide and Cisplatinum for this round of her chemotherapy. Cisplatinum is a very hard drug for your body to withstand, albeit a very good drug for killing the cancer cells. With this drug, her blood counts are expected to begin their fall at day 10 after the last dosage and nadir occurs (blood level lowest points) between day 14 and 23 following chemo. What that means is that her counts (her white blood cells, her hemoglobin, her hematocrit, her neutrophils (which you need to fight infection) and her platelets are all on their way down. We will go into the clinic on Friday for a blood check and appointment with our oncologist. We are hoping that Hannah's levels are good enough so that she can participate in her first communion on Saturday. We have her dress altered, her flowers ordered and we're all set, just awaiting those blood levels. Everyone keep your fingers crossed.
It is so nice to be home and hear her squealing while playing Wii with her sister. The neuropathy she was experiencing while in the hospital is nearly gone, she is almost back to what she was pre-chemo. She can walk by herself again-both inside and out (still shaky on uneven surfaces), go to the bathroom by herself and dress herself (although she doesn't want to). She is not stable enough to run, and her left hand remains shaky, more so than pre-chemo.
We want to thank everyone for the wonderful dinners we have been receiving. Do you people eat like this all the time? We are really being spoiled. It is such a tremendous help to have dinners ready for us, as we continue to work through this maze we're in. Thank you so much!
xoxo
Kim
Monday, May 14, 2007
Now we know why they call it a plan for chemo, it's a plan that is an outline for the chemo, but changes and adaptations are always being made. These changes usually don't happen until the chemo builds up in your system and a drug might need to be reduced or elminated, but with Hannah, it's already happened on her first round. Due to the neuropathy, the doctor held her last dose of cisplatinum. Neuropathy is not a common side effect of cisplatinum, but it's not unheard of either. The doctor was afraid that if she received another dose, her recovery may be inhibited and she may not return back to her baseline. Already on Sunday, the day after holding the chemo and the anti-nausea med that probably exacerbated the sypmtoms, she was walking and talking better. Today she is even a little bit better.
She was given her other chemo drug today, the Etoposide, which is much less toxic. However, when we were ready to go, she spiked a fever. They waited to see how she reacted, but because she was just borderline, with her temperature hovering right below the danger zone, they decided to keep us here for the night. They took a blood culture, which takes 48 hours to grow. Until then, they are very cautious about watching her for infection because of her central line (her mediport). It's a serious condition if the mediport becomes infected and could be life threatening.
Hannah slept the entire day, as a result of the combination of the chemo, the anti-nausea meds and the effects of the radiation. I finally woke her at 5:30pm. She's happily watching a movie and I'm happily trying to sneak some food and liquids into her. Two popsicles so far, still working on some yogurt-thank you Aunt Josephine, our food angel.
Hope to report tomorrow from home.
xoxo
Kim
She was given her other chemo drug today, the Etoposide, which is much less toxic. However, when we were ready to go, she spiked a fever. They waited to see how she reacted, but because she was just borderline, with her temperature hovering right below the danger zone, they decided to keep us here for the night. They took a blood culture, which takes 48 hours to grow. Until then, they are very cautious about watching her for infection because of her central line (her mediport). It's a serious condition if the mediport becomes infected and could be life threatening.
Hannah slept the entire day, as a result of the combination of the chemo, the anti-nausea meds and the effects of the radiation. I finally woke her at 5:30pm. She's happily watching a movie and I'm happily trying to sneak some food and liquids into her. Two popsicles so far, still working on some yogurt-thank you Aunt Josephine, our food angel.
Hope to report tomorrow from home.
xoxo
Kim
Sunday, May 13, 2007
We're all here today with Hannah for Mother's Day. Unfortunately, she had a bit of a setback. Hannah began experiencing peripheral neuropathy-trouble walking, speaking, memory and other cognitive issues and her balance is unstable. I noticed today that she is even more unstable than she has been on her feet, something that she has been experiencing for the past 3 days, but it was getting progressively worse. The oncologist attending today called in the neurologist as well as the neurosurgeon (to be sure it wasn't a complication of the tumor). Along with our oncologist, they decided to hold her chemo today, to see what her status is tomorrow.
On top of that, they started giving her a new drug yesterday to help combat the nausea (she has vomited the last 3 days in a row) and that drug made her extremely agitated, hyper and emotional. She hardly slept at all last night, and woke up at 6am this morning. They also stopped that drug today, in case it was also suspect with regards to the neuropathy.
We'll know more tomorow when they return to reassess her and make the determination on the last dose of her chemo. We don't expect to come home tomorrow, as was originally planned. She is not happy to be here, so this extra time will be a hard sell, but God willing we'll be home very soon.
xoxo
Kim
On top of that, they started giving her a new drug yesterday to help combat the nausea (she has vomited the last 3 days in a row) and that drug made her extremely agitated, hyper and emotional. She hardly slept at all last night, and woke up at 6am this morning. They also stopped that drug today, in case it was also suspect with regards to the neuropathy.
We'll know more tomorow when they return to reassess her and make the determination on the last dose of her chemo. We don't expect to come home tomorrow, as was originally planned. She is not happy to be here, so this extra time will be a hard sell, but God willing we'll be home very soon.
xoxo
Kim
Friday, May 11, 2007
Hannah is receiving her third day of chemo right now, she is sleeping through it. She has been eating practically nothing since we have been here. Yesterday her diet consisted of dry cereal, a candy bar and 2 pretzels. For the first 2 days here, she did well with only a slight stomach ache. Today, her stomach got a bit worse and she got sick a couple hours ago. I just hate to see her throw up what little she is eating. She did eat candy and crackers about 10 minutes after throwing up, crazy isn't it! At this point, I am trying to get her to eat whatever she wants, just to get some kind of calories in her. The doctors all say this is common, and can't give her any IV nutrition yet, because it will interfere with the chemo drugs. I'm sure she has lost weight already, I think she looks thinner, but it could just be my imagination since I see what little she is eating.
One of her anti-nausea meds makes her very sleepy, so she is taking a nap right now. I don't know how she can sleep with all of the noise and people coming in and out, the frequent trips to the bathroom because of the enormous amount of hydration she receives, but I guess it's the drugs. Obviously we can't wait to get out of here.
When she is feeling well she spends a lot of time keeping busy, we were in the playroom today playing Battleship and playdough (one of her favorites) for quite awhile with her physical and occupational therapists. She doesn't really complain, and her spirits are pretty good. She is a little upset that Colby can't come up to visit her tomorrow. Colby has a friend that she has been around whose brother has the chicken pox. So, although she wasn't directly in contact with it, we felt it better to be safe than sorry. We know that two things that are very serious for chemo patients are chicken pox and pneumonia (and probably 2 million other things also) so we felt it best she just skip the visit for now.
The nurses have assured me that the first round of chemo is one of the hardest because she has no track record with this, so we don't know what to expect. This first three cycles of chemo are different, with different timing and different drugs, then those three cycles repeat another 2 times, for a total of 9 cycles of chemo. We should be able to identify her pattern as time goes on with each of the drugs. Once I get it down, it will probably change because the effects of the drugs are cumulative, so it will get worse as time goes by as far as her reaction to the drugs.
One bit of good news today, her MRI scan from last night showed no tumor recurrence, which is the important thing. I think if there had been regrowth I would have reached in and ripped it out with my own two hands at this point. So, GOOD NEWS!
This is yet another learning experience for us. When I'm not with Hannah I am spending time researching, and networking with other families of medulloblastoma kids. There is a lot of information out there regarding nutrition, drugs and different strategies to try with every aspect of this, so you just try to sort through it all and finds what is credible and works best. Prayer most certainly helps, and we thank all of you for your good wishes and support.
xoxo
Kim
One of her anti-nausea meds makes her very sleepy, so she is taking a nap right now. I don't know how she can sleep with all of the noise and people coming in and out, the frequent trips to the bathroom because of the enormous amount of hydration she receives, but I guess it's the drugs. Obviously we can't wait to get out of here.
When she is feeling well she spends a lot of time keeping busy, we were in the playroom today playing Battleship and playdough (one of her favorites) for quite awhile with her physical and occupational therapists. She doesn't really complain, and her spirits are pretty good. She is a little upset that Colby can't come up to visit her tomorrow. Colby has a friend that she has been around whose brother has the chicken pox. So, although she wasn't directly in contact with it, we felt it better to be safe than sorry. We know that two things that are very serious for chemo patients are chicken pox and pneumonia (and probably 2 million other things also) so we felt it best she just skip the visit for now.
The nurses have assured me that the first round of chemo is one of the hardest because she has no track record with this, so we don't know what to expect. This first three cycles of chemo are different, with different timing and different drugs, then those three cycles repeat another 2 times, for a total of 9 cycles of chemo. We should be able to identify her pattern as time goes on with each of the drugs. Once I get it down, it will probably change because the effects of the drugs are cumulative, so it will get worse as time goes by as far as her reaction to the drugs.
One bit of good news today, her MRI scan from last night showed no tumor recurrence, which is the important thing. I think if there had been regrowth I would have reached in and ripped it out with my own two hands at this point. So, GOOD NEWS!
This is yet another learning experience for us. When I'm not with Hannah I am spending time researching, and networking with other families of medulloblastoma kids. There is a lot of information out there regarding nutrition, drugs and different strategies to try with every aspect of this, so you just try to sort through it all and finds what is credible and works best. Prayer most certainly helps, and we thank all of you for your good wishes and support.
xoxo
Kim
Wednesday, May 9, 2007
Cycle 1, Day 1 of Hannah's 9 cycles of chemotherapy started today. We are now at Schneider Children's Hospital and Hannah has received her first two chemo drugs. Amazingly enough, no immediate effect, in fact she asked for more chicken for dinner so she is feeling good right now. Like all other places, our check-in process was slow and a bit frustrating at times, but once we got up to the oncology ward all has gone smoothly. We had our own room when we first got here, but now we have a roommate and all beds are full. There are 18 total beds here, with a few of them isolation beds. So far the nurses are very nice, and everything else seems pretty run-of-the-mill. At least now the anticipation of the unknown is over for the time being and the mysterious "chemo" has begun.
According to the plan, Hannah will get 9 cycles of chemotherapy. There are really three different cycles- 1, 2 and 3, each of those are different in terms of the drugs, then they repeat a total of 3 times, for 9 cycles total. It is not actually 9 months long, because the cycles are either 21 or 29 days long, so if she stays on the plan, we will be done before Christmas. That sounds so much better than February! But, we have been told that almost no child can make it through the entire sequence without changes, either to drugs or dosage or timing, so it is a rough estimate of what is to come.
So for the next 5 days, we're here trying to keep busy. Hannah will have either hydration or chemo the entire time we are here, so she is attached to the IV pole. She has already learned how to ride the pole instead of walk down the hall, and we'll have fun with that until someone tells us it's not allowed. She can go anywhere on the floor with the pole, but can not go off the floor. It's a good thing we'll only be here for 5 days, because we are used to roaming about at will, down to the gift shop or outside for a walk. Five days is workable for us. I have already gotten the "I'm bored," so I'm going to be hopping while we're here trying to keep her busy and interested.
I hope to post some pictures later, but for now the camera is on my "I forgot" list. Until then, you can imagine her happy, smiling and eating popsicles.
xoxo
Kim and Hannah
According to the plan, Hannah will get 9 cycles of chemotherapy. There are really three different cycles- 1, 2 and 3, each of those are different in terms of the drugs, then they repeat a total of 3 times, for 9 cycles total. It is not actually 9 months long, because the cycles are either 21 or 29 days long, so if she stays on the plan, we will be done before Christmas. That sounds so much better than February! But, we have been told that almost no child can make it through the entire sequence without changes, either to drugs or dosage or timing, so it is a rough estimate of what is to come.
So for the next 5 days, we're here trying to keep busy. Hannah will have either hydration or chemo the entire time we are here, so she is attached to the IV pole. She has already learned how to ride the pole instead of walk down the hall, and we'll have fun with that until someone tells us it's not allowed. She can go anywhere on the floor with the pole, but can not go off the floor. It's a good thing we'll only be here for 5 days, because we are used to roaming about at will, down to the gift shop or outside for a walk. Five days is workable for us. I have already gotten the "I'm bored," so I'm going to be hopping while we're here trying to keep her busy and interested.
I hope to post some pictures later, but for now the camera is on my "I forgot" list. Until then, you can imagine her happy, smiling and eating popsicles.
xoxo
Kim and Hannah
Tuesday, May 8, 2007
After the horse show last weekend, Hannah decided that she didn't want to watch anymore, she wanted to ride. I was nervous at first, but they had someone with her and I ran alongside too when she was trotting (YES!) Here is a picture of Hannah riding Mystery, she was very happy about it. Her balance seemed pretty good, but her strength is definitely still waning a bit.
Hannah didn't go to school today, she was just too tired this morning. I have noticed that she is very hard to arouse in the morning, and it has been getting progressively worse over the past week. Today, she just didn't have the energy to stay up after I got her up, so she went back to bed and slept again until I woke her at 11am to head off to the dentist. The radiation oncologist did mention that this would happen, so it's not a big surprise.
We head off to Schneider's tomorrow for our first round of chemo. We're nervous and very apprehensive, but know it needs to be started. We'll be in for 5 days (until Monday) as long as all goes as planned. We'll keep you updated, please say an extra prayer tonight for Hannah.
xoxo
Kim
Wednesday, May 2, 2007
We had a very nice, but busy weekend together. Colby had a horse show this weekend, so Saturday was spent preparing for the show, and Sunday was spent at the show. Colby was great and really had a fun day. Hannah was a bit disappointed at first, but then we came up with the idea that she could have a lemonade stand at the show and she was all for it. She has been asking us every day since she got home if she could put up a lemonade stand at our house, which is on a busy road! These are pictures of Hannah and Colby at the show, Hannah wearing her sister's ribbons.Hannah really is showing no signs of waning energy yet. We are still attending school half days. We tried this week to go a full day of school, but it was too much for her. Today she met her oncologist, and she had her baseline vitals and bloodwork done. He said she is very strong, and still present with balance issues on left side weakness, but that it will continue to improve with therapy and time. She is starting her chemotherapy next Wednesday, May 9th. We will be in the hospital for 5 days of Cisplatin, one of the best drugs to fight the cancer, but also one of the most damaging to her body. We will come home on Monday, May 14th, as long as everything goes well. Hannah also had a baseline audiogram today, which showed her hearing in the normal ranges is very good, she does have some drop off at the very high frequency. This has yet to be compared against her baseline in Boston, prior to the radiation. All is good at this point.
The doctors had originally told us that after Hannah started chemo, she would be unable to attend school at all for the next 9 months. They said she simply would not feel well, and the risk of infection would be too great. Today, however they said if she is up to it, and her blood levels are good, she can attend for short periods of time. This will be more for the social benefit than to actually get any real learning in, but we feel it's important for her to maintain contact with her friends and teachers at the school. She will have a tutor that will work with her at home to keep her up to speed with her class.
So, until next week we will enjoy these last couple days of treatment free life. None of us want this to start, but we know that we have to start to get closer to the finish line and our goal of a cancer free life for Hannah.
xoxo Kim
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