Wednesday, Jan. 30, 2008

One year today. One year exactly since our safe normal lives came crashing down. I remember exactly what we did the morning of January 30, 2007. Hannah had a 9:00am appointment for an MRI. She just had seemed to get much sicker over the prior weekend, with frequent and bad headaches and a lot of nausea. I remember Dave saying "something is just not right" so we called Dr. Mercier on Saturday and left a long message about Hannah's condition asking him for help. By Monday he called and told us that Hannah had an appointment on Tuesday morning for an MRI, and an appointment later that week with a neurologist. Neurologist? I didn't know why, but was willing to try yet another doctor.

We went to our local hospital, ELI for the MRI. I remember sitting in the MRI trailer (yes it was actually a trailer) with the technician as he performed the scan. It was long, Hannah had no anesthesia and they had to give her an IV for the contrast. A little over the top, I thought. I was sitting right next to him, watching the monitor as he performed all the scans, and asked him "can you tell if you see something on the scan?" He responded that he had been an MRI tech for over 30years, and could absolutely tell, but was always obligated not to say anything. What was he thinking that day as he saw the big tumor in Hannah's head, and the hydrocephalus on her brain? I remember him handing me the copy of the CD afterwards and saying "Good luck to you." Why would he say that, I wondered.

Afterwards, we stopped off at a deli for some breakfast before heading back to school. At 1:30pm I got a call from Dr. Mercier. As I was standing in the kitchen, he told me they had found something on the MRI. I said "what?" and his words were "it's a tumor." A tumor? How could it be a tumor? Only months before during one of her many visits to Dr. Mercier and his thorough neurological exam (that we now do at every clinic visit) his words were "well, it's not a tumor." I liked those words better. I knew that "it's a tumor" was bad, but the thought of cancer never even entered my mind.

So, it started. Dr. Mercier asked if I was ok, if he could call my husband for me. He said that he had already called the neurosurgeon and he was expecting us. "I have to go get Hannah out of school? I can't wait until she comes home?" I asked. No, the answer was no, it could not wait, go get her now. Now that scared me. I called Dave on my cell phone as I was walking out the door to tell him. "No, NO" was his response. I called the school and told them I was coming to get Hannah right away. They pulled her out of class, and her teacher walked her down to the office. I was trying to hold it together in front of her, not doing a very good job. "Why are we leaving early?" she wanted to know. I can't remember what I told her. I remember calling Diane to ask her if she could get Colby after school until we got home, Hannah had a tumor. I called my mom and dad and told them. I met Dave somewhere-either his office or the neurosurgeons office (I think there) but can't exactly remember.

We sat in the waiting room trying to be calm. I don't think we waited that long. The "wonderful Dr. Egnor" (in Hannah's words later, and ours too) called us in to show us the films. It was as clear as day, and it was big. From what I remember, he explained to us that Hannah had a tumor in her 4th ventricle, the cerebellum area. It could be one of three things, good, bad or very bad. The good option was an astrocytoma-often benign, after surgery no other treatments are needed, you're done. However, he didn't think it was an astrocytoma. The second option, the "bad" was medulloblastoma, a malignant aggressive cerebellar tumor that would require radiation and chemotherapy to prevent the tumor from recurring after surgery, otherwise it would come back, with 100% certainty. This is what Dr. Egnor thought it most likely was. The third option, glioblastoma multiforme is a recurrent malignant cancer, uncurable with any type of treatment and nearly always fatal. I remember asking Dr. Egnor, "so that means it's cancer? Oh yes, he said, it is." He couldn't say with absolute certainty until the surgery and pathology was complete, but that was his best guess from the films. He was right.

But what Dr. Egnor was concerned about immediately wasn't the tumor, it was the fluid built up on her brain. It was dangerous and had to be fixed right away. We knew we liked Dr. Egnor, but we knew nothing about him, other than he came highly recommended by Dr. Mercier. But, was he the right one to operate on our daughter's brain? We had just met him 15 minutes ago. We asked him for doctor's names for a second opinion, which he readily gave us. He understood our hesitation, but made it clear that no matter what doctor we went to, Hannah needed surgery right away-no later than Friday- to alleviate the hydrocephalus on her brain. It was Tuesday, he wanted to admit her the next morning to begin steroids to help reduce the hydrocephalus and perform the surgery on Friday. That seemed so fast, and so urgent, it must be bad, is what we thought.

We left his office, and immediately started researching Dr. Egnor online with Mike and Kathleen. We were really looking for any glaring bad reports against him. We could find information on where he went to school, his current bio, but no glaring reports of negligence. We looked up the other doctors also, same thing. It seemed an impossible decision to have to make under intense pressure, but one that had to be made, and we had no more time to research. That night, we decided to call Dr. Egnor in the morning and go ahead with him as Hannah's surgeon. So we researched, we talked, we packed bags for the hospital, we put the kids to bed and tried to act normal. We tried to lay upstairs and not think about Hannah laying downstairs with that awful tumor in her head and all the fluid on her brain. Would she throw up again in the morning? We slept, I think, but I remember Dave and I both waking up at 4:00am, unable to sleep any more and decided we might as well get up and get ready. We called Dr. Egnor to let him know we were on our way in, we were to be admitted to the ER at Stony Brook Hospital, where Hannah would start on the steroids right away. She was admitted rather quickly to the PICU (pediatric ICU). What she most remembers is the IV needle in the ER that they had to start in her arm. That was the beginning of the terror for her. The needle they put in was too big, she wouldn't move her arm and she was terrified.

And the rest is history. One year of trials and tests I never would have thought we could all make it through. One year of hell for everyone in our family, especially Hannah. But through it all, she has remained brave and focused and strong. Unbelievably strong. She has endured so much more than any child should ever have to. But through all trying times comes the realization of the good. The good of life, the good of people, the good of a community and extended family that has rallied around Hannah and our family to help us through this.

I talked with Hannah this morning about this "anniversary date" and her words were "what's so big about this anniversary date anyway?" We talked about how it's been a whole year since they found the tumor, we talked about the ER needle, we talked about the things that she has lost (her tumor, her hair) and about all the things she has gained. We talked about the things in her life that would not have been there before, like new friends (she said yes, like the Griffins), and other gifts in her life along the way (some funny things she pointed out like her new little piggy stuffed animals from Schneider's onocology clinic, her hats, her bandaids and of course her baby TOD!)

We've been blessed to meet many kids that are fighters, survivors, angels, warriors and miracles. I didn't even know this world existed before Hannah was diagnosed, now I'll never be able to forget it. Once your child has been diagnosed with cancer, it's like you walk through this invisible door, you're no longer in the "kids without cancer" group. It's not a door you can walk back through. On the other side is a long tunnel. The first part of it is black and small. But as you work you way through and time passes a bit, you start to see some light, you see that you are not alone and it gets brighter. The critical phase passes, and things "appear normal" again. Hannah's hair grows back and you can't see her scars anymore, Hannah goes back to school, we all go back to our everyday activities, but we don't go back to our pre-cancer days. So many people say how it must be so good to get back to normal, but they just don't understand that you don't go back. You can't go back because your lives are forever changed, and now we're in a different place, and part of a different group. This group may not be what we ever intended for Hannah or for us, but it's our reality, with it's ups and downs just like the other "real world."

Thank you all for your uplifting and ongoing support on this journey. You have lifted us up when we needed it and carried us through. It means the world to all of us.

xoxo Kim

Tuesday, Jan. 29, 2008

After my last big post with all the data regarding childhood cancers and lack of funding, many of you contacted me about what could be done, what WE could do to help. Even though sometimes we feel small and insignificant in this fight, there is something that we can do together.

In March, 2007 Congress and Senate jointly introduced the Conquer Childhood Cancer Act of 2007. This legislation will provide $150 million in federal funding for the treatment, prevention and cure of childhood cancer. You can click HERE to read about the legislation, but in summary:

The Conquer Childhood Cancer Act of 2007 is a landmark piece of legislation which authorizes $150 million over a five-year period to expand support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research, establish a population-based national childhood cancer registry, enable researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments, and provide funding for informational and educational services to families coping with a diagnosis of childhood cancer.

How can you help? You can get involved very by writing to your elected officials. And, you can do it online! It's very easy and the letters are already written for you, or you can choose to edit with your own information.

Click HERE for the House letter AND HERE for the Senate letter. You just enter your zip code, and all the information is provided for you. Please take a couple of minutes to add your voice for a cure for pediatric cancer.

As always, thanks for checking in with us. xoxo Kim

Sunday, January 27, 2008

We did get a report on Hannah's albumin (nutrition marker) level on Friday. Her albumin went up to 5, from 1.5 14 days ago. The 5 is well within normal levels. With the weight gain she had since last time, as well as all of the supplements and good food we have been concentrating on I wasn't surprised to see it go up, just surprised that it went up by so much. Albumin in your body has a half life of 21 days, which means it does not go up quickly, but recycles about every 21 days. So, though the count is good, it is somewhat suspicious. This could indicate a problem with this test, or a problem with the last test, which somehow was skewed lower than it really was. It's great to see the big number, but not sure that it's really accurate. She will have another test in one month, so we'll have a trend to monitor.

Hannah a bit wiped out by the end of last week, and came home from school early on Friday. She didn't feel that great Friday morning, and by the afternoon was pretty tired, a lot of emotional crying so they called for me to pick her up early. She just relaxed at home, and had some soup. The rest of the weekend was fairly normal with a great horseback riding on Saturday, Colby's lacrosse game on Saturday, a visit to the emergency room on Saturday. Did I say normal?

Here she is, Colby on crutches. She sprained her foot, most likely a ligament during the game on Saturday, and couldn't bear any weight on it at all, so we spent the afternoon in the ER just in case for xrays. Hannah was quite the supporter, wheeling her around in the wheelchair, propping her leg up, keeping the ice pack on her foot. She said that Colby did it for her, so she was going to do it for her sister now. Colby was lucky with no breaks, just the sprain. She is on restriction for a week with crutches and then we'll see how it feels.

I'll leave you with a picture of Hannah and all of her hair! It is coming in evenly, you can barely see the scar from the ventriculostomy at the top of her head. I noticed tonight that is beginning to come in also in the boost area. It is extremely sparse there, one hair here, one hair there, but encouraging to see that it is coming in at all.
xoxo Kim

Thursday, Jan. 24, 2008

Just a quick update tonight for those of you whom are wondering. Hannah's counts are up again, although most are still not in the normal range. They are still headed in the right direction. They drew blood from her port today and it was terrible. Today was probably the worst ever. It took three of us to hold her-me, Rob, and a nurse while another nurse drew the blood. Once the needle is in, she doesn't move since she is so scared of it, but she was determined that she not be accessed today. She probably gave me about 5 bruises, kicking, crying, yelling, biting and pleading. The longer it is between port accessing, the worse it is. She knows it has to be, but she fights for all she is worth for it not to happen.

If you're interested in seeing a mediport being accessed, you can click HERE to watch a sample video. It's so calm and quiet in this video I found online, it just isn't like this for us. When the link comes up, click on the little video camera underneath the photos of the mediports. It's quick.

We don't know anything yet about her nutrition level, that level should come back tomorrow. We do know however that she won the bet from Grandma, she gained 1.32 pounds, so she is up to 21.4 kilos. Did I predict it right or what? I told Hannah today I'm psycho, I mean psychic.

More tomorrow, after the level comes back. It was a sad sad day today, little Julian was buried.

xoxo Kim

Wednesday, Jan. 23, 2008

Today was a very happy day in our house. Colby and Hannah wanted me to run and get the camera to post these two pictures on the blog tonight. This is the old protein drink before today, and this is the new drink (Carnation Instant breakfast) which I switched to today. It has about half as much protein (but still quite a bit) as the other drink, and not really the same nutritional make up, but still very nutritious and so much easier to get down. Yahoo, Halleluia and Glory Be!!

Tomorrow we head to clinic to get Hannah's blood drawn again to check her nutrition levels. This means she has to be accessed. She hasn't said too much about it, and I have not focused on it, since that strategy didn't seem to work last time. The test results take at least a day, so we won't have the results until Friday. They also have to redo another test from last time since the lab changed it's protocol and the blood was sent down in the wrong tube, so it couldn't be analyzed. I have to believe that Hannah's weight and nutrition level have to be up. Since our last clinic visit over a week ago, we have done nothing but focus on her food intake, started supplements and really concentrated on her eating and drinking, so I truly believe it will be better. I told Hannah I bet her weight went up to 21.4 kilos, so we'll see if I'm right. She is hoping to win that $5 from Grandma for a weight increase.

Hannah was in school again today. Her return to school has been no less than miraculous! I really thought that the first day would be a very short day for her, but boy, did she surprise everyone. She told me that she not tired like she used to be when she was in school before. This just tells me how badly she felt before. It's great to hear that she seems engaged, social, and happy while she is there. She is quite tired when she comes home, and homework so far has been a struggle, but we're working through it and "keep on keeping on", right Mr. Hat Man?

We will report in again tomorrow with news from clinic.
xoxo Kim

Monday, Jan. 21, 2008

Well I'll try to make this post a bit less scary and informational than the last one. I made that post when I was upset over the children that had died and just mad. I usually keep things honest but upbeat here, and to be very honest, it's not always upbeat for us and Hannah. This weekend she seemed to go backwards in how she is feeling. She got up like usual on Saturday morning, then threw up. That scared me half to death. Why? Because that is what she did for months before they discovered the brain tumor. Lots of mornings, Hannah would wake up, throw up, then go on with her day. That was all I could think of as I stood behind her in the bathroom. Ironically, I was also thinking that I used to stand behind her holding her long hair back. Now she has no hair to hold back, she has cancer. Did you know that most kids with medulloblastoma that relapse do so within the first year off treatment? Little Julian that just died on Saturday had standard risk medulloblastoma, same as Hannah. His cancer recurred six months after he finished chemo, and he died 3 months later. That is what I think about every day. And that is what scares me every day, especially when she is throwing up in the morning.

I forgot, this post was supposed to be more upbeat and less scary. She didn't go to horseback riding on Saturday, since she really didn't feel that well. Her stomach hurt and she had nausea throughout the day. Sunday was better, but still nausea and stomach pain. She did feel well enough to talk us all into bowling. It was fun and I bowled so badly that Colby and Hannah both beat me (yes, legitimately.)

Today was more of the same. Her food intake today consisted of 4 strawberries and about 4 blueberries for breakfast, 3 chicken nuggets and about 5 fries for lunch and a small bit of chicken noodle soup with the chicken, noodles, carrots and of course her favorite, protein drink!! Tonight it only took 2 HOURS to drink the one 6 ounce drink. Colby drank hers in about 10 minutes, and Hannah sat there for nearly 2 HOURS. Really it's not that bad...unless you spill it. One piece of advice, never drink it while in the living room with two dogs and an off-white carpet. Picture the little dog jumping up, spilling the whole drink on the formerly white carpet with the mom (me) yelling and screaming while mopping it up with a bucket, brush and lots of towels. It smells horrible when it's seeping in the carpet, and it looks even worse the next day. It doesn't even look like I wiped it up at all! The carpet was due for a cleaning anyway (Thank you Tod) so let's see if it comes out. Dave and I are not hopeful.

I did want to share some photos from the weekend. Hannah is very excited that her hair is growing back. It seems to grow more each day. She said she wants it to come back the same color, just a little curlier. It really changes her look a lot! I don't have a good picture, but I will take one this week and post it. The hair seems to be coming in uniformly over her head, except to the area where the radiation boost was to the tumor bed (on the back of her head). It is coming in very little there, if at all. Here is Hannah with white hair and beard, the bubble girl!

xoxo Kim

Sunday, Jan. 20, 2008

It is with a heavy heart that I post today. Three fellow brain tumor warriors died in the last 3 days, unbelievable. Twelve year old Stash diagnosed with medulloblastoma, then relapsed with glioblastoma died on Friday. Our sweet Julian, only four years old died on Saturday and three year old Tyler died from medulloblastoma today. I just posted Julian's website here on Friday, and Julian died yesterday, finally up with God and free of any more pain and suffering, only about 4 months after his medulloblastoma recurred. I just don't believe that so many of our children are still dying from this cancer. Not enough is being done for research in the field of pediatric cancer. Bet you didn't know that only 3% of all money budgeted for cancer research is designated for pediatric cancer research. That's not enough. If I can name three kids who died in the last three days of cancer, it's just not enough.
Some information from the Children's Brain Tumor Foundation, and other unknown facts:

Today, as you read this, 9 families across America will learn their child has a brain or spinal cord tumor. A father will cry alone in the shower. A mother will be numb with grief and fear.

Maybe 9 families are too few to matter. Pediatric brain and spinal cord tumors are, thankfully, a rare disease in America. Only 3,400 new cases each year. Only the equivalent of 200 elementary school classrooms full of children.

Today, 3 families across America will bury their child who has died of a brain or spinal cord tumor. Friends, family and community will try to make sense of an untimely death and the unfulfilled promise of a life. Brain and spinal cord tumors are the deadliest childhood disease. The 5-year survival rate is lower than for any other childhood cancer.

Today, 6 families across America will help their child transition to survivorship. A mother will be too exhausted from providing constant care to her child to simply write checks to pay bills. A child surviving a brain tumor oftentimes faces ongoing physical and mental challenges. Surgery, chemotherapy and radiation can cause permanent damage to a young and growing brain.

Today, there are, happily, over 20,000 pediatric brain and spinal cord tumor survivors in America today. But, they and their families face many challenges to living an independent and fulfilling life.

-There are over 120 different types of brain tumors
- Cancer rates among children are increasing by 1% per year. No one knows why.
-12,000 children every year (33 children each day) are diagnosed with some form of cancer of which 35% (4,200) do not survive
-3,400 children every year (9 children each day) are diagnosed with some form of a brain tumor of which 40% (1,400) do not survive
-Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents
-One in 330 children will develop cancer before the age of 20
-Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined
-Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.
-In the past 20 years only ONE new cancer drug has been approved for pediatric use
-Only 3 % of the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3 % for ALL kinds of Pediatric Cancers combined!)
-The cause of childhood cancer is unknown
-Cancer rates among children are increasing by 1% each year. No one knows why.
-Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research
-The government recently CUT the budget for Childhood Cancer research
-As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year
-The symbol for childhood cancer is the gold ribbon

Food for thought. Not very appetizing. xoxo Kim

Friday, Jan. 18, 2008

School day today! It was a bit strange getting both girls ready for school. Hannah is not used to getting up early when it's not a clinic day. She only had time to drink half of her protein drink this morning (I'm sure she was SO upset about that, ha) As we were walking out, she said "well this doesn't feel normal, I'm not used to going to school." That made two of us.

Hannah did great today, and stayed in school until 2pm (at which time I had to pull she and Colby out to attend a french horn day with Colby, go figure!) She would have stayed the whole day, had we not had to leave early. I really didn't know what to expect when I took her this morning. I had the feeling that she would cling to me crying when I took her in (which was the case the last several times I took her before the holidays.) Again, surprise!! She clung to me a bit, but gave me a kiss and left with Mrs. W with no problems. Then when I got a phone call at 11am, I wasn't surprised, because I had expected her to come home early, and had discussed it with her, telling her it was ok if she wanted to come home. However, it was just an update call, saying Hannah was doing great. Again, big surprise!

When I got there to pick them up at 2pm, Hannah came out talking with friends, just like old times. She sat in the office with them, talking until Colby arrived. Talk about a difference. She said she "wasn't tired one bit like she used to be." Biggest Surprise! Now I know how badly she must have felt before when she was going to school and only making it a couple of hours a day before nearly collapsing and coming home. She still doesn't feel 100%, but so much better than before. It was a good day all around. She had a snack, half a peanut butter and jelly for lunch and then a pretty good dinner with me tonight. She did seem genuinely hungry tonight and 1 1/2 rolls and some ravioli too.

Tomorrow is horseback riding, so I hope it is fun and a little less upsetting than last week. I truly feel she is moving forward, slowly but surely. Here is a picture of horseback riding from last week.

I did want to mention another fellow brain tumor warrior who is losing his battle with medulloblastoma. Julian aka King JuJu was diagnosed with standard risk medulloblastoma after Hannah, in March of 2007. He is only 4 years old, and he does not have many more days left here with his family before he goes on with his new family. He and his family could use your prayers. You can view his webpage at (then enter his page name: juliansworld). His mom is an eloquent writer, it's just a heartbreaking story. He had standard risk medulloblastoma (same as Hannah), and his cancer returned with a vengence 6 months post chemo. The reality of brain tumors is indeed a hard reality we are living.

xoxo Kim

Thursday, Jan. 17, 2008

All is pretty much status quo here. Hannah's eating does seem better at times, and at other times it's the same. Yesterday she actually asked for more chicken at dinner. I cooked some up as quickly as I could and she ate some more, much to our surprise. The girl is certainly getting her chicken in lately, which is good for protein and her body. I am buying only organic now, so no extra chemicals or supplements, only extra cost! Let's see, today she had her protein drink in the morning, followed by 2 strawberries. For lunch she had pizza sauce and cheese (in a bowl, without the pizza dough, yuck!) and half a peanut butter and jelly sandwich. She had a snack of raisins and goldfish in the afternoon, then for dinner she had some sauteed chicken, with corn on the cob. Another protein drink at night. WOW, that's a lot for her. I sure hope we see an increase in her nutritional count next week. However, this does mean she has to be accessed for the blood draw, and she is already aware of this due to her dog like hearing. She seems to hear everything I say in any other room in the house. Sometimes she yells out things while I'm on the phone and she is in the living room watching tv because she wants in on the conversation. She is always paying attention, always. They say she lost hearing at the high frequencies, but not sure if I believe that.

I did forget to report that Hannah is now sleeping in her own bed! She has slept downstairs alone for 3 nights now, only 1 of those nights did she actually stay all night by herself. Usually she calls me down at sometime during the night, and now wants to come upstairs to our bed, like old times. She is SO happy when she gets to come up. At 3 am, sometimes that's amusing and sometimes it's not! I do miss being down with her and Tod during the night, little Tod sleeps in his own cage now too. Here is Hannah showing off her OHHHMMMM! She definitely has not lost her sense of humor.

Tomorrow Hannah is headed back to school for the first time since November 2nd. I couldn't believe it when I saw that it has been that long since she has been in school, WOW! I told her she is in charge of how long she stays, depending on how she feels. She still has nausea daily, sometimes it interferes with her daily activities and sometimes not. She is excited and nervous to be going back tomorrow. Her stamina still is not great. We went to girl scouts this afternoon for the first time in a while too. From 4-5pm we were on a field trip where she spent the whole hour standing with the group. Afterwards she was saying how her legs hurt, and she isn't used to standing up for that long at one time. That is a good example of how she gets easily fatigued. We'll see what tomorrow brings, but we're excited that she is taking that step now and returning, even if only for a brief time.

ps. Ignore those posts on the blog, Colby wants you all to know that she LOVES the protein drinks, and waits all day for the next one (she only has to drink them once, in the evenings.) But watch out, that could always change (ha ha ha), love you scuba girl!!

xoxo Kim

Wednesday, Jan. 16, 2008

Another 2 days of eating horror! Most times, I am sitting next to her trying to coax her into eating. Other times I'm walking away totally frustrated and telling her it's up to her, if she doesn't want to eat, she doesn't have to. Yesterday, after spending an hour drinking a chocolate protein drink, she struggled to eat some fruit. She ended up throwing the whole plate of strawberries, blueberries and grapes into the garbage thinking she could fool me into thinking she ate it. Well she couldn't do it and came upstairs crying that she threw the food out. I know it's a lot of pressure for her, especially after the comments and threats from the doctors. She feels it, she knows it, and it's always there.

Yesterday we went to see a naturopathic doctor, who specializes in cleansing and strengthening the body to address and prevent both chronic and acute diseases. Naturopathic doctors work in harmony with the body's immune system, to increase strength and vitality. Our friend Alec went to see this doctor, who put him on a regimen of supplements and his mom said she noticed a dramatic difference in his strength, muscle tone, and immune system. After our visit on Monday to clinic and Hannah's very low nutrition status, I wanted to hear what this doctor had to say. She did have vast knowledge of natural medicines and recommended quite a few things for Hannah. At this point, I'm willing to try them to see if it boosts Hannah's nutritional status, especially her protein level. Well, easier said than done. So, here we are with Hannah and Colby trying to choke down their first drink which included protein powder and greens powder combined with chocolate ice cream and milk. I figured this would be a good supplement for Colby also. Oh boy, it was not a pretty picture. Lots of crying and stalling and whining. Can you see those tears in the picture?
I have to say that the drinks were pretty bad. They were a greenish brownish blob, thick and chunky and the taste was awful. It was not a good experiment.

This morning, I eliminated the greens from the drink, so now it's a chocolate protein drink, which can be taken pretty easily, but still with lots of encouragement and lots of other words, it takes forever. Here is what Hannah's schedule of supplements are right now:
Vitamin D3-anti inflammatory
Zinc Sulfate-immune support as well as stimulation to restore taste buds
Omega 3-anti inflammatory and immune support
Vitamin K-to ensure against over production of calcium from the Vitamin D
Kytril-anti nausea pills
Paleomeal protein drink
ready-set-go - natural constipation relief
intestinal repair complex-to help repair damaged intestines from chemo
winterberry liquid-antioxidant complex

I feel like I'm torturing her each day to try and get all this in her. I don't have a good schedule down yet, especially since each dose of something takes hours to get her to take it. I have yet to get it all in in one day. Here they are tonight with the new protein only drink, it went a bit better, and at least they were both able to drink it eventually.

I did speak to the doctors today and they said that Hannah's liver function is normal, which means that the low albumin level is truly a measure of her inadequate nutritional level. To put it in perspective, Hannah's level is equal to, or lower than many kids in a study from Mexico City whose diet consisted of beans and cornmeal cakes, and only on a very limited basis. These kids were severely malnourished and their condition was considered serious enough to warrant their admission into the hospital for IV feedings and albumin injections. That is where Hannah is right now. The doctors are going to draw blood again next week at the hospital to check her prealbumin, a different indicator which measures changes in nutritional status much quicker than albumin levels, which take about 21 days to increase, at the earliest. We will see then if all this torture is making a difference.

xoxo Kim

Monday, Jan. 14, 2008

Another day at clinic today, a little good and a little bad news. Hannah's counts have finally begun to raise, thank goodness!! They are still not within normal ranges, but at least they are now moving in the right direction.

This was also the first week in a month that Hannah has not lost weight. Her weight was exactly the same as last week, at 20.8. This week we have begun to see moments of break through in eating, times when she would actually eat one whole piece of pizza or french fries. But those were often followed by setbacks of no eating or one of two bites of something. The new medicine seems to be working better for her, although she still does have daily stomach pain and nausea.

One of her levels, Albumin, which measures nutrition came back very low from her complete blood work up last week. She is undernourished, especially not getting enough protein in her diet. The doctors seem worried about her now in terms of her general health status. They told her again today that if she doesn't start eating more, and better, that they will have to use the nose tube to feed her. She went through one whole year of surgery and radiation and chemotherapy and avoided the feeding tube that most medullo kids get, and to have to use it now would be devastating. None of us want that, especially not Hannah so she really has to try hard to eat, and eat good food. Up until now, the doctors have been pushing for her to eat whatever, as long as it provided her with calories. Now the focus has switched a bit to get more protein and good food into her body. Tonight for dinner she had chicken, wild rice with butter and edamame. All good food, and she did a great job at eating nearly everything. It took over 2 hours, and we heated up her food about 5 times, but she kept at it, and made it through. In the past she would have just completely refused and I would have accepted that. Things are changing. It's still so much of a struggle each and every day, many times a day with food! We'll just keep working on it. No wonder she is so tired.

Today was not a great day, she woke up feeling badly, asking for her medicine. By early afternoon she needed more medicine, which knocked her out for 3 hours. She was still complaining that her stomach hurt when she woke up, but rallied enough to eat. I know she is being motivated by the threat of the NG tube.

Tomorrow we're meeting with yet another doctor. I'm taking her to a naturopathic doctor to see what their analysis is, and what we can do to help her. Our friend Alec's mom recently met with this doctor and was very impressed with how well her son has done with the supplements they recommended. I'm hoping they can provide us with some nutritional assistance to get Hannah where she needs to be.

Here are a couple pictures of Hannah working out at home on her trampoline and big ball. She tires quickly, but we're working daily, when we're home to get her going. xoxo Kim

Wednesday, Jan. 9, 2008

Well finally some good news. Yesterday the doctor's office called me on my cell phone. I hate when they do that, because why would they call with good news? If they actually have to go to the trouble of calling you, it must be bad. Well, yippee, it was good. Hannah's cortisol level went up to 13.3 (from .3 while she was on the megace). We were very happy to hear that, which takes her out of the "danger zone" for a number of issues. One more step towards recovery.

We made a trip into school yesterday, with the agreement that Hannah would wear a mask. She wanted to finish the Picasso project she has been working on for weeks because it's due to be in an upcoming art show at the beginning of February with many other pieces from her school and classmates. If you think that the other kids stare at a child with no hair, you should see the reaction to a child with no hair and a mask on their face. After the initial intimidation, she went about with her art work. On the way out though, it all snowballed and she ended up in a heap crying. Thank goodness Natalie was there to take her outside while I waited for Colby who was just getting out of school. It was short lived, and Colby and her friends Tori and Emilie really tried to make her feel better (telling her how GREAT she looked with that Mickey Mouse mask on!)

So today has been filled with homework and some exercise (more on that one later). Hannah received a letter from each child in her class yesterday just filling her in on their activities, telling her they missed her, asking about Tod. She was so happy to get them, and read each one with care. How we laugh and smile over those, they are great! She went to work last night and wrote out a letter back to the class, complete with an explanation of her low counts and a picture of her baby Tod. We're trying to keep the lines of communication open as much as possible with her school so the transition back won't be so traumatic.

We wanted to share something else with all of you. Hannah received a very special gift this past weekend from the Reimer's. Check out her special Congratulations plate! Pam had it signed by so many people at the 4H, school, scouts, etc. All of the horse's names are on the outside of the plate too. Hannah thought it was great, along with the dog record book for Tod! We're going to find a very special place to display it.
xoxo Kim

Monday, Jan. 7, 2008

We left bright and early and got to clinic today by 7:15am, not even the nurses were there yet, so I guess that was a bit early. Hannah did get her blood drawn before 8am. We should have the results of her cortisol level tomorrow or the next day. I also asked for several other tests which we have run before to check various other things like her copper level (linked to blood vessel growth which can fuel new tumor growth), Vitamin D, inflammation level, and a few other things. All I will say about accessing today was that it was bad. However, right before the nurse put the needle in, Hannah got very quiet and still, knowing that it was best to be still. Last night she told me that it doesn't hurt when the needle goes in, she doesn't like it when she can feel the needle touch the back of her port. They have to do this to ensure it's all the way and can draw blood and administer the meds.

Unfortunately Hannah’s counts were down again. It’s not as bad as it could have been her red counts seem stable, only going down by a point or two, but her neutrophil count went down to 568, from over 700 (white cells). We don’t know why, her doctor is somewhat perplexed that she is not recovering faster. He is not alarmed since she is not crashing down, but he would normally expect recovery by this time. He decided not to put her on shots though, since the other portion of her white cells are holding and the count will hopefully start to come up by next week. That means no school this week, my prediction is she won't be there the rest of the month, but we'll have to see. We have to be a bit more diligent now also about germs.

Hannah's weight went down again this week too, not too much down to 20.8 kilos (about 46 pounds). The doctor did tell her today that if she didn’t eat well, and her weight kept going down, he was going to have to use the NG tube for feeding. She immediately started crying, but I think that is part of his strategy so that she’ll really try and eat. I know she’s trying, I know it’s so tough for her.

The anti-pneumonia drug was given today also via IV, and really made her feel badly before we left. She slept all the way home, and more when we got home, until 3 this afternoon (from 10:30am). She went to bed again at 9 tonight, so she needs her sleep. I told her tomorrow is homework day for us!!

Thanks for checking in on us,

xoxo Kim

Sunday, Jan. 6, 2008

Tomorrow should prove to be a very interesting day. We have to go into clinic to have Hannah's early (7am) blood drawn to check her cortisol level. I really can't even make a prediction on whether I think it has come back up to normal levels. Hannah sleeps every day until 9:30 or 10 in the morning, so going by that is not a good sign. There is a lot more to it than that, so I'm hopeful that her adrenals have started functioning normally again. She is also due for her anti-pneumonia drug. There are two ways to get this drug, via IV or pill (two different drugs actually, but they both do the same thing). Hannah has always received it via IV since she was already accessed for chemo. Tomorrow I'm going to see if they will switch her to pills, so she won't have to endure the drug via IV, since it is especially nauseating. This will not eliminate the need, however, for her to be accessed and have her blood drawn.

For about an hour before she went to bed tonight she was VERY upset about being accessed. She repeated over and over that she "can't go and won't go" to clinic. I think it's worse since she has not been accessed in a while, then it was when it was more regular and she was expecting it.

I also wanted to give everyone an update on Hannah's Cans for Cancer campaign. Tonight I made a spreadsheet to keep track of all donations received and cans recycled, as well as all of our donations out to other organizations helping kids with cancer. To date, since we started Cans for Cancer in August of 2007, Hannah has raised$1,023.15! That money has come from bake sales, donations, can recycling, and help from so many wonderful people. That is a fantastic start to this project. Hannah and I have already talked about expanding the project, so watch for some exciting changes to come.

xoxo Kim

Monday, Jan. 7, 2008

We left bright and early and got to clinic today by 7:15am, not even the nurses were there yet, so I guess that was a bit early. Hannah did get her blood drawn before 8am. We should have the results of her cortisol level tomorrow or the next day. I also asked for several other tests which we have run before to check various other things like her copper level (linked to blood vessel growth which can fuel new tumor growth), Vitamin D, inflammation level, and a few other things. All I will say about accessing today was that it was bad. However, right before the nurse put the needle in, Hannah got very quiet and still, knowing that it was best to be still. Last night she told me that it doesn't hurt when the needle goes in, she doesn't like it when she can feel the needle touch the back of her port. They have to do this to ensure it's all the way and can draw blood and administer the meds.

Unfortunately Hannah’s counts were down again. It’s not as bad as it could have been her red counts seem stable, only going down by a point or two, but her neutrophil count went down to 568, from over 700 (white cells). We don’t know why, her doctor is somewhat perplexed that she is not recovering faster. He is not alarmed since she is not crashing down, but he would normally expect recovery by this time. He decided not to put her on shots though, since the other portion of her white cells are holding and the count will hopefully start to come up by next week. That means no school this week, my prediction is she won't be there the rest of the month, but we'll have to see. We have to be a bit more diligent now also about germs.

Hannah's weight went down again this week too, not too much down to 20.8 kilos (about 46 pounds). The doctor did tell her today that if she didn’t eat well, and her weight kept going down, he was going to have to use the NG tube for feeding. She immediately started crying, but I think that is part of his strategy so that she’ll really try and eat. I know she’s trying, I know it’s so tough for her.

The anti-pneumonia drug was given today also via IV, and really made her feel badly before we left. She slept all the way home, and more when we got home, until 3 this afternoon (from 10:30am). She went to bed again at 9 tonight, so she needs her sleep. I told her tomorrow is homework day for us!!

Thanks for checking in on us,

xoxo Kim

Thursday, Jan. 3, 2008

I guess I should have waited until the night was over until I posted about Hannah sleeping in her own room by herself! At about 12:30am I heard a little peep on the non-baby baby monitor and came rushing down to see if it was Hannah just talking in her sleep. No-she was awake, her feet were hot inside her pj's and it woke her up. She wanted to come upstairs and sleep with us. I told her she couldn't because Dave has a cold, so out came the trundle and in came mom. Off came the pj's and we were sleeping again. We'll try again but not tonight because she said she's not ready. I'm working on it though.

Not a good eating day, although her calorie count was about 900, which is better than a few other days this week. It's a good thing that heavy cream, ice cream and butter have a lot of calories otherwise she might be on a feeding tube by now. She told me yesterday she just can't eat, it's the stupid cancer and it's not her fault she got the cancer. Now that's a tear jerker.

Look how much Tod has grown since his first sweater!

xoxo Kim

Wednesday, Jan. 2, 2008

Big happenings at our house tonight! Hannah is sleeping alone in her bedroom and wants to sleep by herself all night long! Now that is BIG. It started last night when I had the trundle bed put away to vacuum. This is where I sleep, with the trundle right next to her bed, and have been since we came home from Boston. While in Boston I slept in a hospital bed right next to hers (and sometimes with her in her bed) and before that in a chair next to her bed. If I wasn't there, then Dave was. Since January 31, 2007. So for Hannah to want to sleep by herself, is such a break through for her.

We have mentioned to Hannah that after chemo was finished, she would start sleeping by herself again. Dave mentioned it to her recently, and she was dead set against it. I was totally surprised when she suggested yesterday that she sleep alone. She said she liked the look of her room without the trundle. She was a bit hesitant (and I was too, but I was trying not to let on.) So I suggested we get a monitor for her room so that if she needed me during the night, I could hear her (our room is upstairs and Colby and Hannah's rooms are downstairs.) So today we went off to get her a monitor (ie baby monitor). When we got there and went to the infant section and Hannah saw the picture of the baby on the package, she said "I don't want a baby monitor." I knew that was coming. We found one without a picture of a baby on it, just a "monitor" so she was satisfied with that. It's in her room, and Colby has now decided that she wants one too because she can broadcast everything on it. She gave us an example tonight! Once I told her that I would be able to hear everything she changed her mind pretty quickly.

Here is Hannah asleep and surrounded by all of her favorite things-her Tod, her many animals, her beloved quilts (some you can see and some you can not, but we have some very beautiful and hand made blankets and quilts), her favorite Hannah pillow, her Grandma's pillow (made by Grandma many years ago) and of course her two sleeping blankets. Now if we only had lambie (who was lost right after surgery at the first hospital, but never found) all would be complete.

So, I'm about to go upstairs to bed in my own bed for nearly the first time in a year. I think Hannah is handling this transition fine, and it's me that is a bit scared. Hopefully I'll get some sleep tonight! Moving on bit by bit, it feels pretty good.

xoxo Kim

Tuesday, Jan. 1, 2008

First post of the new year! I just finished reading some of the websites I read daily, some of the other kids/families I have "met". I had to share from one of them, a little boy, Coleman, age 4 also with medulloblastoma. He recently has had a recurrence of his cancer. Coleman has a twin brother, Caden. Boy, do they make me laugh. They have a wonderful family and live in Iowa. His mom often posts videos of the boys. Wow, are they energetic! And so funny too! She says they are lately on a Barack Obama kick. Since they live in Iowa, they are being bombarded right now with tv commercials. Here are a couple excerpts from her last few posts on his site:

"Coleman is still doing political ads every few minutes. Yesterday morning he whispered in my ear, “mommy? Det up. It’s time ta Det up now!” I still had my eyes closed and told him “uhhhuh, Coleman, just a minute” He leaned back down and whispered, “This is Ba-wock Obama ann I ‘impwoove’ this message!” What a good way to start the day- with me giggling my head off! "
and also this: "They have two new sayings since Christmas. The first is “Barack Obama” which usually comes out… ‘a rock a bomb a’ and they repeat it, rhyme it, {a shock-a-tomma} etc. I guess they like the rhythm of it. Just when it dies down, another commercial is in the background and it starts all over again. Coleman wants to know WHY the guy is ALWAYS on Tv anyway? "

His website is, site name is ColemanScott in case you would like to read for yourself. I just wrote to the Obama campaign to request that he visit this family, we'll see if I get a response. The family is tackling this recurrence head on, and I pray that Coleman is one of the ones that beats the odds. If anyone can do it, he can.

I also wanted to share with you a very special gift we received for Christmas this year. My 2nd cousin (???) Anna and her family in St. Louis sent us this amazing lucky horseshoe. In part, Anna writes "horseshoes represent good luck. I think this one represents the love that many friends and family have for you. It also holds your courage and strength that each of you have displayed. It represents the smiles that you bring to many faces from your can donations, games and fun stuff you bring to the hospitals, the yummy cookies you bake and share with others. Now close your eyes and pictures a horseshoe." And WHAT a horseshoe is it! It is a shoe from one of the Budweiser Clydesdales in St. Louis, where Anna and her family live. I have not seen Anna in several years, since she wasn't able to come to the family reunion 2 summers ago. What a thoughtful gift, we were just amazed!! Check out the pictures.
We will find a very special place for it. xoxo Kim