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!


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.


Monday, May 28, 2007

Queen Hannah in Vermont

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!


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!


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!


Wednesday, May 16, 2007

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!


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.


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.


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.



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.

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.


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