Hannah's Test Site

We are back home now, we got home last night after 10pm. They don't have a definitive answer on Hannah's infection, the sample could have been tainted, or she could possibly have had some growth, especially considering that her fever has been up and down since her last round of chemo. However, the culture was positive for staph coag negative-which is pretty much on everyone's body, it just doesn't matter to us because we can fight it off and she can't right now.

They allowed us to come home last night, with Hannah receiving IV anitibiotics twice daily at home. That means her port is accessed and I have to administer the drugs via an IV with a pump system morning and night. I was trained this morning by a home care nurse, and although I think I could do it in my sleep from watching the nurses so often, it's a bit different when you have to do it yourself. I have to set up the pump, flush her port, be sure all the settings are correct, flush her again, heplock the port, watch for any signs of problems or reactions, etc. etc. I don't know if it's more nerve wracking than the shots or not yet!

She will be on these antibiotics until Monday, just in time for her to return to clinic on Tuesday for another round of chemo. This will be outpatient during the day only, at least that is what we are expecting.
So it's good to be home, we hope we won't have another stay in the hospital until July, when it's her next planned 6 day admission for chemo. Here is a picture of Colby and Hannah decorating Hannah's birthday cake in the hospital before they both had BIG pieces. Hannah and I made the cake, it was a 4 layer chocolate, white and lemon cake with wild bird animals! We gave the rest to the nurses, yummy!


xoxoKim

We're back in the hospital. We got a call at home at 12:45am saying that the culture had started to grow bacteria (at hour 22 out of 24 hours) so Hannah needed antibiotics and needed to come in right away. Although it wasn't an immediate danger, they have to be sure that they control the infection, especially if it's in her port. We drove in and came into the ER to be admitted. It was not a good experience, they had to stick her 4 times to access her port, which was very traumatic for her, especially at 4am. We came up to our room at 5am.

She did ask in the emergency room what day it was, and figured out that is was now Sunday and she would have to cancel the party. We'll have it another day, hopefully soon.

On the upside, I think the appetite stimulant has started to kick in a bit. When she woke today she had 2 donuts, and 5 hardboiled eggs! She asked yesterday why she was suddenly "so hungry." It's good to see her eat, but it doesn't seem to be a constant yet, as now she might not eat anything else today. At least it's starting to work so the fear of the feeding tube is gone for the moment.

We'll be in the hospital at least until Monday, when we get the results of the culture back. Hopefully back home soon.

xoxoKim

Hannah's counts were up today, and no growth in the culture-

WBC 9.62
ANC 5950
HbG 10.8
PLT 142

They purposely raised her WBC and ANC so that when she reached her nadir (low point) approximately 10-14 days out from her last chemo, which would be this coming Tuesday or Wednesday, she wouldn't crash again and have to be readmitted. They knew Hannah had her birthday party on Sunday, and were happy to do their part to get her there!

We got home about 2pm and called everyone to confirm the party. We are due to come back to the clinic on Tuesday, our next chemo is the following week, June 20th, outpatient.

xoxoKim

Hannah is feeling much better. Her fever went down by the end of the day yesterday and she was awake and active today. She spent 4 hours in the playroom today, I told her it was probably a record for the longest time ever spent making crafts in the playroom. Grandma and Grandpa came up to visit for most of the day, which helped raise her spirits too.

Her counts are better today-
WBC 1.51 Low
ANC 340 Low-most likely can't go home until it's at least 500
HgB 7.4 Low
PLT 117 Low

Due to the drop in her red blood cells now also, she had a blood transfusion today. Her body seemed to tolerate it well, so problems there and hopefully her blood will now stay at normal levels on it's own. The blood transfusion takes 3 hours, and she was in the playroom the entire time, so that's a nice distraction. Kids are so resilient it's amazing. No bacteria growth in the culture after 24 hours, so that's encouraging.

Her eating is ok since we've been here, however she refused to eat any dinner. Finally at about 9pm she had a candy bar and two pieces of chocolate. I told her that this was the last time for that allowance and she just smiled-she knows!

Waiting for counts tomorrow for a release.
xoxoKim

Happy Birthday Hannah!

Yesterday was Hannah's 8th birthday, she had a good day taking in cupcakes to her classmates (which she and I made together). It was something she really was looking forward to so I'm happy she was able to do it, even though it was tiring to her. The first picture here is a pillow case which Mrs. Baker made for her and all of her classmates signed. It is so special. I'm reading more and more about how important friendships and school relationships are to kids with cancer that are in and out of school so much.It helps them feel part of everyday normal life, and keeps them from depression and anxiety. We're so grateful that she has such good friends. Thanks to Ty also who came in just for her party with a broken collar bone!

She didn't eat that well during the day, but had 2 ravioli, a half a roll and even a piece of cake, woohoo!! That's a lot for her!
She went to bed crying that her whole body ached. She awoke this morning early to go to her clinic appointment to check her blood levels. She seemed abnormally tired, but I figured it was because we left the house at 7:30am. When we arrived, they drew her blood for testing and determined she had a temp of 100.4, which is considered a fever for a child with low white blood counts. Her counts were:

WBC .493 very low (should be 4.6-10.2)
ANC 43 very low (should be 2,000)
HbG 8.78 low but acceptable
Platelets 121 low but acceptable

So, she didn't have to have a platelet infusion after all, but now we're in the hospital. Because she was neutropenic (low white blood cells and neutrophils-the ANC) and had a temperature, she had to be admitted. Neutropenic kids are at risk to bacteria because the blood doesn't have sufficient neutrophils part of the white cells that fight off infection. Thus, everyday bacteria can develop into a life threatening condition.

She was admitted and her fever went up to 101.5. They started her on two broad spectrum antibiotics to fight off any possible infection. They drew blood and we have to wait 24 hours for the first read of the culture. If it's positive, they will change the antibiotic to something that is specific to the bacteria. If it's negative, they will continue the same antibiotics until the 48 hour mark, when the culture would show growth if bacteria is present. If nothing is present, and her ANC goes up, we will be discharged. Her ANC has to go up AND she has to have 2 negative cultures in order for us to be released. Therefore the earliest she can be released is Saturday. Of course, that's what were are hoping for.

Grandma and Grandpa just got into town today to help celebrate her birthday, just in time for us to go into the hospital. We hope to be home with them soon. Her fever is now down to 99.3!!

xoxo Kim

Unfortunately the weekend wasn't great for Hannah. She is not eating since this last round of chemo. It's a combination of the chemo, her type of tumor, and the sores she now has inside her throat (mucositis). The medicine for the mucositis isn't very pleasant, she has to swish and swallow it. She did it once and that's it. She can't even open her mouth all the way now because it hurts so badly, but still she won't take it again.

She is eating so little that the doctor today prescribed an appetite stimulant to help her. If this doesn't work, she will have an NG tube (common for medullo kids) which is the tube that goes down her nose to her stomach, and she gets fed that way. If it sounds bad, it is.

We gave her one dose of the medicine today, and maybe it's helping, or maybe it's my imagination, because for dinner with Dave she finally ate four bites of apple, four bites of peanut butter out of the jar (really good), 2 pieces of bacon, 1 piece of toast and some Hawaiian Punch and then 1/2 of a cupcake for dessert later. That's more than she has eaten in the last 3 days combined. I can't imagine the medicine is helping already, but as long as she keeps eating like that I don't care.

She isn't back in school, because her counts are on their way down, and she isn't in physical therapy again because of her counts, and thus very low energy.

I have been giving her the daily Neupogen shots at home, and so far so good. It's going better than I had imagined, and neither of us have gotten hurt yet, so that's good. Of course, she doesn't like them, but those great bandaids have REALLY helped. She picks one out before hand and then carefully places it on after by herself. Her latest were some great ones from Uncle Mike and Mrs. Graeb. Thanks!

xoKim

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

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

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

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

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

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.......

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

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

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

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

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

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

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

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

I realized today that I have to start including the year on my posts because I will still be doing this next year. Now that's a thought.

Hannah really gave us a scare today. She awoke and threw up, just like she did before she was diagnosed. She then appeared to be fine, so we went to PT, where she promptly threw up again. This is so indicative of her pre surgery days, it was very scary. We immediately called three doctors, and were able to talk with her new oncologist, who said it is very common with medulloblastoma kids to need anti nausea meds for quite some time after surgery, radiation and chemo. Hannah went off her meds this week, one week post-radiation. He said it did not mean the tumor was back or anything else, and that we had no need to worry. She didn't have any other symptoms, and after I gave her the med again, she perked up and has been fine the rest of the day. For a short period of time though, it was quite nerve wracking.

Hannah did go to school today for her author's tea. This is an event that the children have been preparing for by creating, illustrating and publishing their own poems. Hannah got up, without assistance, and read at the microphone. The one poem she had written in Boston about how much she missed her class and wished she was home. This came immediately following a friend's poem entitled "my friend Hannah" where she talked about Hannah and wondered "why did Hannah have to go away". Talk about a tear jerker, at least I wasn't the only one in the room a bit misty eyed.
She is now home playing horseopoly with Grandma and Grandpa on their last night in town. I was trying to coax them into a few more nights, but they will come back soon. We sure will miss them, as many of my friends in town have pointed out also. They have quickly become part of our community here, and have made many friends. They have been such a tremendous help, it's going to be quite and adjustment after they leave. I know Hannah will miss them also. Thanks mom and dad, we love you!

xoxo Kim

Today Hannah went to school without mom! She did have her aide with her full time, but she was happy allowing me to leave her at school, just like the old days. She is just thriving at school, and even asks to do homework at night. She's a superstar! She is a bit behind the class in certain concepts, they are studying the water cycle right now, but she doesn't seem to notice so much and keeps on working. Tomorrow the class has their "author's tea" where they recite poems they have created, illustrated and published. She is very excited. If I can make it through without crying like a baby, it will be a miracle.

We met with Hannah's oncologist this week. Hannah will be receiving treatment at Schneider Children's Hospital in New Hyde Park on Long Island. We will be using a slightly different protocol from Dr. Allen at NYU, administered by Dr. Atlas at LIJ (Schneider's). Dr. Allen's protocol uses a slightly different method for one of the drugs, which may help to spare her hearing. She goes next week for baseline audiogram and blood work, then starts chemo probably a week and a half after that. The doctors informed us that Hannah will not be able to attend school at all in the next 9 months, and possibly longer, but we're still looking into that, and hope that some school is possible.

So for the next couple of weeks we are trying to have as much fun as possible. Hannah went to girl scouts this afternoon and had a great time up to her elbows in dirt at the greenhouse. Actually, the dirt covered every part of her, including her bald head, but who cares. For right now, she needs to be a kid without any worries.

xoxo Kim

Hannah's first day of school was yesterday, Monday, April 20th. By the time Monday came around, she wasn't even nervous, she was ready to go back. The children in her class were absolutely wonderful. They were all so welcoming, and just happy to have her back. we started off the day watching the Charlie Brown video "Why, Charlie Brown, Why?" about a girl who has luekemia. Hannah and I watched the video many times in the hospital, so we were already familiar with it. Never once did I cry during the video in the hospital, but watching Hannah watch the video was another story. She was so calm, and enjoyed the video with her class. Then, we had a discussion, you can see us here in the picture talking with all the kids, about Hannah and our "adventure" over the past few months. I must say that these kids are amazing. They made comments mostly about how they missed Hannah, and how "I was so excited over the weekend to see you I could hardly stand it". By today, day two, it's like Hannah was never even gone. I'm so thankful for the joyful acceptance of youth. They have made her transition back to school so easy, it's more than I could ever hope for.

Tomorrow Dave and I meet with another oncologist regarding Hannah's chemotherapy treatment. I'll have more information then about when she starts and what it entails. Until then, we're just gearing up for the Yankees Boston series in NY, hopefully a better outcome than last weekend!

xoxo Kim

Today is Saturday, beginning of our first weekend at home. Today is the first day I have really felt a dramatic difference in being home. Normally at the hospital, we had no radiation and only 1/2 hour of therapy on the weekends, and then we were free to leave the hospital for the day. We did have many fun adventures in Boston, but it's not like being at home on a Saturday, where you can go out or stay in and do nothing. It's very relaxing, and the first time I have noticed such a big difference in being home. Hannah went to PT for her first evaluation on Friday, and they were impressed with her strength and attitude. She has work to do, but has made great progress to date. Hannah will also attend school beginning Monday for half days. She is excited, but at the same time, apprehensive.

We had a welcome home party today for Hannah with her closest friends and family. She was so excited, she sat upstairs on the deck and greeted everyone as they arrived. This is a picture of Hannah and her friends as Hannah made her "wish", wonder what it was because I certainly know what mine was. And another picture of all of Hannah's friends and family with her welcome home cake. Her friends are so wonderful, they are supportive and encouraging and just happy to have her home.

On another note, our boys better step up and pull this one out. The Yankees have lost 2 out of 2 games so far, and we can almost hear all of our friends from Boston cheering all the way from Long Island. One more game tomorrow to save face, let's go! XOXO Kim

Yes, we're finally home! Our trip home was so much different than the horrible trip up to Boston. Hannah fell asleep about 15 minutes outside of the city, and awoke in the drive thru of McDonald's asking for a happy meal. She was so excited as we pulled into the driveway. Colby, Grandma, Grandpa and Riley were awaiting our arrival with ballons and banners everywhere. Hannah was squealing in delight as we got of the car and started up the walk. Colby has been hugging and hugging her since we got home and I thought Riley was going to flatten her he was so excited.

Since we have been home she has been quite mobile inside the house. She can negotiate from one room to the other without any problems, there seems to be enough to hold onto to help her keep her balance. I did notice her trying to whip herself around the corner into the hallway and almost fall down, so I just try to remind her to take it slowly. She really enjoys being able to walk somewhere by herself.

Today was our first full day home and she was busy from the time she woke up. She started with 2 hours of horseopoly (after Grandma's pancakes), then it was cards and a puzzle and 2 minutes of the Yankees game, then more cards and crafts and quite a bit of time outside. It was very nice outside, so she enjoyed a couple hours outside.

Tomorrow she has her first physical therapy appointment and evaluation. Monday she will go to school to meet with her class, and possibly stay for a half day of school. She will continue with half days as long as she feels up to it. As the time goes on, she will feel more fatigued from the effects of the radiation, even though it is over. We're told that will most likely hit her the hardest about 30 days post radiation, and last about 2 weeks, just in time for her to start her chemo. We're just taking it day by day right now, and will follow her lead on how much she can and wants to do.

Good to be home, that's for sure...xoxo Kim

BYE BYE BOSTON! Hannah and I spent last night planting, yes planting, in our room. We had Yankee plastic hats- you know the ones you can buy ice cream in at the Yankee games, the same ones most people throw away, but we keep for fun things at home like this! We planted the hats with flowers for our friends here as a final going away Yankee gift. There was dirt everywhere, but we had fun doing it together. Hannah also signed a Yankees poster and we hung it in the gym for everyone to find in the morning. It's not difficult to spot amongst the sea of Boston posters and signs. Hannah really got a kick out of us secretly sneaking into the gym tonight after everyone had left and hanging the poster.

Hannah will get right back into the swing of things when we get back home. We are going into school on Friday morning to meet with her class. The meeting was initially set for me to go in and watch a Peanuts video about cancer with the class, and answer any questions they may have. However, Hannah and I discussed it and she asked if she could come also! We are looking forward to seeing everyone again. If everything is in place, Hannah should return to school half days next week sometime. Joe and Colleen-we'll have to tell you about the mysterious way your package showed up last Friday night, no one seems to know how it got here, but it was waiting on Hannah's bed when we arrived back late that night. We loved it and can't wait to see you both!

Hannah will continue with her physical, occupational, and speech therapy at home. We are anticipating that she will begin her next phase of the treatment, her chemotherapy, in about a month. However, we still do not have an oncologist lined up for Hannah, as we received word today that our insurance company has rejected our 2nd request for a doctor. We are still working on that one.

On the eve of our departure from Boston, we say goodbye to all of our new found friends (some pictured below), many of whom are now life long members of our family. Brian that includes your wonderful father, Mr. Griffin, also a proton patient. He has kept us entertained with his lively personality and daily change of hats-of course his hat today was the best-Go Yanks! What a beautiful spirit he is!

Tomorrow we will be able to say, TREATMENT #30, WE'RE DONE!!!!!!!

XOXO Kim and Hannah

Who is this Boston Girl?
Treatment Day #28. Our countdown only has 2 days to go. This does become routine after this long, so coming home will mean a change in that routine (however strange that may sound). There are so many wonderful people here, therapists, doctors, nurses, other patients, etc. and we will really miss everyone. We have met some other patients here who have become good friends, and who we will cherish for a lifetime.

On our last weekend, Dave came up on Friday. Hannah wasn't really feeling that well this weekend, but we still got out of the hospital each day. We went to browse the mall with Hannah, a great therapy session since she spends most of the time walking and pushing her wheelchair. Saturday we went to the Museum of Natural History at Harvard, what an amazing place! Here is a picture of Hannah with a giant turtle shell, it was huge! We relaxed at the hotel and Hannah got to swim again. It was very busy in Boston this weekend, since so many runners and their families were in town for the Boston marathon. I didn't realize that so many people run for a specific cause to raise money. A man came up to us in the mall who noticed Hannah and could spot her as a surgery patient. He was running for Boston Childen's hospital here in Boston, last year he ran the Chicago marathon for Chicago Children's. His son had a brain tumor, a bit different from Hannah's, when he was 5 and is a happy 8 year old now. So nice to hear.

Our love and thanks to all of you again for all of your prayers and support. Kim

Today is the beginning of our last weekend here, a place that has begun to feel like home for Hannah and I. We have come to love and trust the people that share our lives with us every day, working to get Hannah better. We are happy to be coming home, but we will miss the wonderful people here. Our routine is somewhat set here, in a very safe and structured environment. It's a bit unnerving to be back at home, the little fish in such a big pond again. I think that in time we will come back to Boston and think of it as a wonderful place to visit instead of just the place we had to come for radiation. We will have to return here in about a year for a follow up with her doctor at the proton center, and a few other doctors here. We may just be ready to come back by that time.
As always, the childlife specialist here, Audrey, is always looking for new and fabulous things for Hannah to do. Here is Hannah doing "frog painting", where you paint your palms and the bottoms of your feet, then you jump like a frog, painting your picture. Hannah thought it was wonderful, as you can see in the pictures.

This coming Monday is a big event here-the Boston Marathon, held here since 1897. Today Spaulding got a visit from Ernst Van Dyk, a wheelchair marathon competitor, who is sponsored by Spaulding Rehab Hospital. He has won the race the last 6 years in a row! His fastest time was 1 hour, 18 minutes, which is the world record for a wheelchair marathon. He was a very nice man, from South Africa, and was born with congenital defects to his right arm, and two legs. I didn't know until I read on his website today that he has 2 prosthetic legs. This is a picture of Hannah and I with him. They are calling for a bad Nor'easter Sunday night into Monday, so there is talk of postphoning the marathon.

Dave came up today for our family meeting, where we met with Hannah's team of therapists and doctors. They make their recommendations for her care after her discharge, her reentry into school, etc. We can't say enough about all of the caregivers here, this is one of the top pediatric hospitals in the country and they are all very good. Hannah is putting together a report of her time here, which she will use to talk to her classmates when she returns to school so this weekend we will be taking pictures of some of her favorite places here like the Science Museum, Aquarium, Duck Tour busses (which we didn't do, but look like a lot of fun. The vehicles are half truck, half boat and go right from the road to the water), her proton friends, her therapists and a few other fun places. It is therapeutic and will help her to explain things to her friends, who will most certainly have a lot of questions about where she has been and why. Can't believe it's our last weekend here!
xoxo Kim

Treatment #25 today, only 5 more to go. Unbelievable and a bit scary too to think that this will be over next week and we can come home. Hannah is really amazing all of us with her ability to walk and dance and even run! She is not doing any of these things alone yet, but to see her run down the hall with her therapist is very exciting! Her doctors have all given her great reports, and we were told today that she is doing very well. Here levels aren't what they would be normally, but they are somewhat acceptable for a child receiving radiation treatment. They're trying to build her up as much as possible before she does begin her next hurdle-that's the chemotherapy. They attribute much of her recovery to not starting the chemotherapy yet, which tends to really set most kids back during their rehab. So it's been a blessing that she hasn't received the chemo yet, and that her body has been able to get stronger. Here is Hannah with one of her many mermaid creations-thank you Nancy for hours and hours of mermaid fun (and I'm kidding about the hours and hours part)!

Hannah began a bit of preparation with the therapists today for her release and return to home and school. This is very emotional for her. It's safe here, and all of the kids are in the hospital with something. Having no hair and being in a wheelchair is normal here, but won't be once we get home. Preparing her for that is what they are working on now. We are hoping that Hannah will be able to go to school after we get home and before she starts her chemotherapy, so look for her back in school very soon. She will need to continure with her physical and occupational therapy once we get home, and she will need to begin to prepare for her chemo, so her attendance may be somewhat sporadic, but we're hoping she can start half days right away!

Tomorrow we're all set for a field trip to the Atrium Mall with the other kids and therapists. They will have a mall scavenger hunt, take a tour around and just relax out of the hospital. They do theraeputic field trips every Thursday, so this will be our last one. We're both looking forward to a little time away for some fun, and the kids do have a good time together when they go places. They feel safe together, and they all really know each other now.

Here is a picture of Hannah with her new dog Scruffy. She loves this dog and has decided to take it with us around the hospital, outside of the hospital and even over to the proton center for treatment. You probably can't see the medical tape attached to Scruffy's feet, so that Scruffy doesn't get too dirty. It does seem to be working.
XOXO Kim

Treatment #23 today, only 7 more to go. All is still going well. Hannah has been having some trouble during the night, so we're just trying to work through that so she can get a full night's sleep without the trauma that she has been having lately. I think we have been really lucky that Hannah has done this well so far. I didn't think I'd be saying lucky about this, but we're realizing how much worse it can be. Hannah still has many issues to work through, and some other issues that may not even begin to surface until years down the road, but right now we feel fortunate that she has responded so well to the treatment and the therapy she is receiving here. Thank you all for your love and support,

xoxo Kim

We had a wonderful weekend with everyone here. My parents stayed at a Holiday Inn a little futher from the hospital this time and it had a pool. Hannah was able to swim since her port was de-accessed and she is not on chemo right now. She had a great time. I, on the other hand, was a nervous wreck. I try not to treat her like she is any different, and say that she can't do things that other kids can, but it was so scary at first going in the water with her and seeing her swimming around. After I got over the fear I had that she shouldn't be swimming at all, it was a bit more fun for me. She acted like her old self, and even when another child came over to ask why she had no hair, it didn't phase her. We just said it all fell out, and the other girl said, "that's why my mom told me to wear a bathing cap, because my hair just falls out too in the water." Kids are so great that way, just so matter of fact about it all.

Hannah got to swim on Friday night, and Saturday as well. On Sunday after church our family went to brunch together. It was so cold in Boston today, walking outside was challenging! Hannah had a good time, even though her brunch consisted of bread with butter and soda. After brunch it was back to see what the Easter Bunny left us. He hid an egg for both Colby and Hannah, which they promptly found, so next year the bunny should be a little better at hiding them. Dad and Hannah finished off the Easter celebration with a game of catch in the hallway. We spent a great deal of time out of the hospital this weekend, which is very good for Hannah's emotional state. We can't stay anywhere overnight, so each night we are back here with her. After everyone left in this afternoon, Hannah and I spent a few hours making mermaids and purses. Only 8 more days of treatment, then we will be back home. I have noticed more spots on Hannah's scalp from the radiation, so we're just praying that she holds out for those 8 more.

We would like to say Happy Easter to all of our friends at home, and a special hello to all of our "Aunt Liza friends" all over the world. Not only is it fun reading your posts from all over the US and the world, but it is also a geographical challenge for us to find you! We're having fun with that too! We hope all of you had a peaceful and blessed Easter.
XOXO Kim and Hannah

Today was treatment #22 and a very busy day for Hannah. After treatment and therapy in the morning, Hannah had a neuropsych appointment with a neurological psychologist. This appointment was testing to provide a baseline for Hannah's cognitive abilities. She had a full 3 hours of testing including reading, writing, problem solving, math, and more. Research shows that whole brain radiation therapy, like Hannah had, is associated with cognitive decline. This is especially true in children below 7 years of age, who experience a very significant loss of function after whole brain radiation therapy, so Hannah is on the borderline. This was one of the reasons we chose proton radiation over traditional radiation, to hopefully minimize cognitive loss, among other things. She will be tested several more times in the next several years to monitor her cognitive abilities as compared to her baseline results.




After the looooong test, we came back to the holiday party at the rehab hospital. Here is Hannah painting eggs with Grandma and Colby. Boy was that fun! Here is Hannah's new dance partner, the biggest Easter Bunny ever! With straps on the feet that allow him to dance with Hannah, it is great and Hannah has really enjoyed him. Hannah is having a great time with all of her visitors! XOXO Kim

Treatment #21 today, now that sounds good. It seems that we learn a little more each day about Hannah's treatment. The treatment now is very quick. She is in the treatment room for a total of 20 minutes, sometimes even a bit less. Her actual radiation time is about 1 minute in total. She has 2 fields of radiation, both in the tumor (boost) area, and each get about 30 seconds of radiation. The rest of the time in the room is set up time on the machine to position her in exactly the right position to ensure the correct field of radiation. To be off by even a fraction of an inch could damage her hearing, or her growth or cognitive capabilities, or many other things, so they are very careful and measure everything precisely before the radiation is performed.

On a happy note, today we went to an Easter Egg Hunt in the healing garden. The healing garden is a very serene and peaceful place in the cancer center here. It's on the 8th floor of the building, on the roof, both inside and outside. It's really a very beautiful and comforting place, except for today when it was hopping with excited kids looking for eggs. We had a great time both at the hunt and at the party following in the oncology office afterwards. Here is a picture of Hannah back in her room with her eggs, including the golden egg!

After the egg hunt, Grandma and Grandpa showed up with Colby! Here is Grandpa with Hannah. We took them all on a tour, and went down to the 4th floor of the main hospital, to show them our latest find on one of our adventures-a mummy! The first operation using ether gas for sedation was performed here in MGH in the ether dome in 1846. The ether dome is a theater arena which was used for observation during this monumental surgery. In the ether dome is an encased mummy, an artifact given to the hospital complete with it's sarcophagus (mummy case) which is very elaborately painted. They also have all the tools used in the operation, as well as some other interesting artifacts. It is in the national historic register. After the tour, and a home cooked meal by Grandma, Hannah immediately had Colby engaged in card game after card game. Hannah is excited that they will be staying through the rest of the weekend.

Thanks again for you ongoing support, love and prayers. It is very comforting to us to continue to have so much contact with everyone, even though we have been gone now for over 2 months. It makes Hannah feel that she is still very much a part of things though the support of all of you wonderful people and that is very important to her emotionally. I wish we could attend the upcoming fundraiser for Hannah, but will still be in Boston. My mom and dad are looking forward to it though, enjoy!

XOXO Kim

Hannah and the clowns....clowns come by each week to stop by and entertain the kids. Hannah enjoys them and they make her laugh.

Treatment #19, tomorrow will be #20, so that's exciting. Still going well. I'm almost afraid to say it out loud, but Hannah has been off of her anti-anxiety drugs now for over 24 hours, and all is well. Now she just gets anti nausea meds, and one other fiber med. We saw another of our proton family today, a little girl who is two years old, she is a twin and had a cancerous tumor in her leg. She has been unable to get treatment since last week because of a skin reaction, her mom says it is pretty severe so they are waiting a bit for it to heal. They are only 3 treatments ahead of us. So, we're saying a prayer for Gabby and another prayer each day that Hannah continues on with the success she has had so far.

xoxo
Kim

Treatment day #18. Hannah gets weighed in and checked every Monday at the Proton Center, and this Monday she weighed in a full 1/2 pound higher-cause for rejoycing!!! She is doing so well with her treatments. It is cumulative, so it seems that by Friday, her appetite has decreased, and her scalp shows signs of the "burn" marks, but by Monday, some of the burns have begun to heal a bit, and she is eating more. Here is Hannah with her Yankee tatoos. We received them today in the mail, special delivery to Hannah. We're not sure who sent them, so someone please let us know. She loves them and is very happy about antagonizing all the Boston Red Sox fans on opening day! Hannah's lost tooth still hasn't shown up (and I'm not doing alot about looking for it.) Here is what she left the tooth fairy last night, and I guess it worked since the fairy found her here. This is a picture of Hannah eating her pizza when she lost her tooth.
We were given a discharge date today from the rehab hospital. As long as everything goes as planned, and continues as well as it's going now, we will be coming home on April 18th. Alleluia, Alleluia!! It's so nice to have a date and a goal for coming home. It gives all of us motivation and hope. Home-you don't know how much you appreciate it until you're gone for 3 months. We really miss everyone and everything at HOME! My parents are back for the month of April to help out again. Thanks Mom and Dad, such a Godsend and such a big help. Thank you to everyone for all of your love and support!

xoxo
Kim

What an eventful weekend Hannah had. Here is Hannah with Colby and Abby. She had a wonderful time on Saturday when Diane and Abby came up along with Colby and Dave. Here is a picture of the three of them on our walk back from Faneuil Hall-it was a very nice day, and Hannah enjoyed spending the time outside. Even though she had to watch while the girls run around, she seemed to enjoy the time with them, and they really made her laugh. Hopefully soon, she too will be outside running and chasing squirrels with them. We walked along the Freedrom Trail, down by the Harbor, through the Boston Common and visited a very old and famous graveyard, where John Hancock, Benjamin Franklin's parents, Samuel Adams, Paul Revere and even Mother Goose are buried. Even the kids thought it was very interesting.

On Sunday, we walked over to Faneuil Hall again and visited Build A Bear. Hannah shared her gift certificate with her sister, and here they are with their creations. It was so nice seeing her enjoying the place just as the other kids did, and forgetting if only for a short period of time, about all this craziness, just being a kid again. It was so nice to see, and fun for all of us. We have never been to Build a Bear before, WOW! We had a quick lunch there too, where Hannah promptly bit into her piece of pizza, then swallowed her tooth. She has lost 2 teeth since we've been here.

Here spirits and her appetite seem to perk up on the weekends. Hopefully, we only have 2 weekends left, if all goes well and her treatments continue on schedule.

XOXO
Kim