Wednesday, February 25, 2009

Today is Hannah's first day of yet another attempt at stopping the stomach aches and throwing up. The doctor has doubled her one medicine which is an antihistamine and often used for anti-nausea and anti-anxiety. He also started her back on a double dose of her previous anti-nausea medicine also. We'll see if this stronger dose and combination of two medicines works any better for her.

She has had two pretty good days yesterday and today. She said that her stomach still hurt, but I didn't get any calls from school and she actually ate breakfast without too much prompting! That is really something for her!

So yes, it's time to start our focus again on Relay for Life. I looked back at my posts from last year, and I made this pretty strong post about the American Cancer Society and how their money is spent. They spend less than 3% of the money they raise each year on pediatric cancer research. That's just not enough. The ACS spends more money on administrative costs, fundraising costs, executive salaries and a lot of other things than they do on pediatric cancer research. With that said, they do a lot of good work too. For us, Relay for Life is about much more than the money raised. Here are a couple photos of Hannah after I came home from the meeting last night. I got her a couple glow sticks, so here she is with a little light, and without!!

Hannah really had a good time last year at her very first Relay as a survivor, even though the night was cut short because of the bad weather. Hannah is a cancer survivor! To see her walk around that track last year in her purple survivor shirt with that big smile on her face, waving to everyone was just incredible. It was inspirational! I do think that she really got a kick out of the event last year. She liked to be recognized and honored as a Survivor.

Our focus again this year for our Relay for Life will be on offering luminary bags in honor of a special person in your life touched by cancer. These bags have so much significance during the Relay. Here is a description about the luminaries:

Help us shed light on the fight…

Whether it’s a parent, a sibling, a friend or a neighbor, we all know someone who has been touched by cancer. Relay For Life is one way of recognizing loved ones who are surviving cancer and remembering those who have lost the battle. At dusk, we quietly remember those whose lives have been touched by cancer. Luminary bags line the track, each bearing the name of a loved one. This ceremony of light symbolizes the hope and courage with which we all continue to fight cancer. For a donation, you can remember someone who lost his or her battle to cancer, or honor someone winning the fight.

In total silence, all of the luminaries are placed and lit around the track and everyone walks the track by the light of the candles. Last year there was a bagpipe player who led us while playing. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer or just something in general. Last year this was such a special part of the Relay for us. What a sight it was to see all of the beautiful bags that we and other friends decorated last year. There were so many luminary bags with Hannah's name on them. She loved it! And to see all of the bags that the girls decorated for our friends, warriors and survivors was wonderful.

So, we are open for sales! In fact, we got our first order today for 5 bags, thanks Grandma K! The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Our Relay is May 30-31st this year. Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page.

I'll leave you with some photos of luminaries from our Relay last year, GREAT!!!

Thanks for your support. Kim

Sunday, February 22, 2009

We have had such a nice week off from school, it's hard to believe it's over already and tomorrow the girls are back to school. 

We can't tell if the new medicine is working or not for Hannah. She started off on Friday with the new medicine and promptly threw up. Then for Saturday through Tuesday she felt pretty well. She got up in the mornings and had very little signs of nausea or stomach pain at all. I thought YES, this is it! We finally found something that has helped her so that she doesn't have to cry and moan and throw up every morning. Then for Wednesday, Thursday and Friday she threw up. Saturday she didn't throw up but she felt just awful, and this morning she did fine. ~~Sorry~~if that was too graphic for everyone :)

How do you figure THAT out? Is it working or not? Yet another email to the doctor, so we wait. Again. 

In the meantime, the girls were busy this past week with horseback riding, visits with friends, hiking, biking, and a trip to the city (without mom and dad!!) On Thursday night, the girls went into the city with their Aunt Kathleen to see Wicked. They stayed overnight, with trips to the stores the next morning before heading back. They had a great time, what a treat for them.  Here are a few pictures, the view from their hotel room, the girls in front of the M&M's store, and with their new shirts.

We also said goodbye this week to our riding place of nearly 4 years, the 4-H. Unfortunately, the loss of funding has caused the county to close down the year round riding program. This program was so much more than just riding for the girls and many other families. All of the farm animals were given away, all of the horses were shipped out and the director of the program was let go. We fought tooth and nail, to no avail. We wrote letters (the kids and adults), we attended meetings and we contacted executive directors. The girls were heartbroken, especially Colby. We were there when most of the horses were trailered away, which was very sad. We surely will miss that place.


Saturday, February 14, 2009

Hi everyone! Hope you all had a Happy Valentine's Day! We are on break from school this week, and I got back today from an overnight with some friends. The rest of the week we will spend relaxing a bit and playing Hannah's new favorite game, Horseopoly (monopoly, horse style.)

After vomiting for the 3rd time last week, Hannah has started on new anti-nausea medicine, Atarax. It's actually an antihistamine, used often for anxiety and nausea, as well as other things. We'll try it for a couple days and see how it works. I hope it helps her. Hannah was able to stay in school all day on Friday, after throwing up in the morning. She started off great, and just as I was thinking that she looked pretty good, uh oh.

On to better's that time again...RELAY FOR LIFE!!  It's hard to believe that one year has already passed since our last (and very first) Relay for Life in 2008.

This year, I spoke with Hannah and Colby about setting up our own team, to raise awareness for pediatric cancer. They liked the idea, so we have our own team, with Hannah as our team captain named Kids vs Cancer. The girls have decided they would like to do a car wash this year as a fundraiser. I think that sounds like fun. Like last year, we will not be soliciting for donations for our team. Although we do support the American Cancer Society, we do have other priorities for raising money that focus specifically on kids like CureSearch, Pediatric Brain Tumor Foundation, Children's Brain Tumor Foundation and of course Cans for Cancer. Our focus this year will again be on luminaries.

Last year we sold an amazing 130 luminaries. We all had so much fun decorating the bags in honor/memory of your friends and family. And the bags that were decorated by others we so great! Please watch for the luminary information here. We hope you will all join us again this year to surpass our numbers from last year. 


Thursday, February 12, 2009

Thank you to everyone for all of your well wishes, it means a lot to us. This has been such a long journey, beginning even before Hannah was diagnosed. She was so sick, for weeks, months and then years. It took nearly two years for Hannah to be diagnosed. Until that time, she spent so many mornings throwing up. She spent many afternoons on the couch. She finally declined and began to have headaches. Then the tumor, the surgery, the radiation and chemotherapy.

Now, with all of that behind her, and cancer free, she is back to the vomiting and the afternoons on the couch. How is that fair? Hannah's oncologist took her off her anti-nausea medicine to see if it was doing anything at all. So far Hannah's week looks like this:
Monday-stomach ache
Tuesday-morning vomiting
Wednesday-morning vomiting, home from school at 11am, slept 11am-4pm, still felt badly afterwards
Thursday-severe stomach ache, no eating. Home from school at 12:00pm

I really don't see any difference before or after they stopped her medicine. I have an email into Hannah's oncologist to see what he wants to do now. I think he will most likely tell me to start a new medicine to see if it makes any difference. I sure hope so.

She has been upset that she still feels so sick. She was crying yesterday that she is tired of feeling sick all of the time. Someone said the other day, thank goodness the MRI was good, now you're heart doesn't feel like it's going to stop. I told them, no it doesn't, now it's just breaking. It's just hard to see her continue to struggle.

But as our good friends in Boston say..."Keep on keeping on" and that's what we'll do!


Tuesday, February 10, 2009

The results are in, and it's all good. CLEAR SCANS, words right from the neuro-radiologist. Whew, and double WHEW!!

I was just so nervous for this scan. I think I was mentally preparing myself for bad news. This way, when I was told, I would be a bit prepared and not totally blind sided. I'm not sure if that would have worked anyway, but I was just expecting it with so many children relapsing and dying from medullo. It seems like everyday I am aware of another child relapsing. Hannah is now 14 months out, and still clean. I feel like we're still walking that tightrope without the net, just waiting to fall off. At least now we're another 3 months closer to the end of the rope.

It was a crazy day. We arrived for our 9:15am MRI. They were taking us back when I mentioned the blood draw that was already set up. Like Peggy says, the PLAN was to go to MRI, where they would insert the iv, draw the blood then use the iv for the contrast during the scan. Well, that PLAN didn't happen. MRI said they couldn't draw blood because only anesthesia could do that, and they weren't there until 1pm. I made them call up to our doctor, then I ended up on the phone with the doctor's office too. We ended up going upstairs to our regular floor to have them put in the iv and draw the blood.

Now, you might be saying to yourself "so, what's the big deal?" I knew as soon as we were told to go upstairs that we wouldn't be back for awhile. It's just never quick or easy up there. I almost feel like an outsider in that office now, most of the kids don't have hair, some were throwing up in the waiting room, another was screaming in the treatment area. I feel like the people are looking at us like-why are you here? It's the new generation of people, after us. 

It wasn't too crowded, but we waited for an hour. Then I asked again if they would be taking her soon since MRI was waiting, and we were an hour late already. They still hadn't even located her chart (which had already been pulled and was waiting for them-I informed them of that right when we got up there.) After another half hour went by, I got pretty frustrated and was venting my frustrations to our friend Rob, who does the finger sticks. Rob then proceeds into the back room and 30 seconds later Hannah's doctor and his PA come out, pull Hannah's chart, and take us over for vitals. We then meet with him for a good 20 minutes, he gets the iv put in and blood drawn right away an we head back down to MRI-2 hours late. Par for the course I guess. Hannah did well with the iv, no kicking, biting, screaming, or hitting. She did shed a few tears, but she was still. Much better than it used to be. She just hates having to leave that iv in her arm for any length of time. She likes it so much better when they just put it in for the contrast then take it right out. The MRI tech was going to leave it in after the contrast, but I asked him to take it out. Actually, I pulled it out myself. I started taking off the tape because I didn't want him to just rip it off her arm. I know how it hurts to have someone adjusting and pulling the tape with that line in your vein. They had secured it with Tegaderm, as well as 4 pieces of sticky tape. I had it all off, and the tech said "you might as well just pull it out." I didn't even give Hannah time to object, I just pulled it out and he covered it. 

So, PLAN was turned upside down today. We usually have our MRI first, then meet with the doctor. I like having the MRI first because then they have preliminary results when we go up to meet with the doctor. I can get the results right then and there, quickly. So, today I had to wait. We left, stopped for a piece of pizza on the way home, which just so happened to be right next to a ceramic shop. If you know Hannah, you know how much she loved the ceramic shop that we used to have in town. So, we made a deal (yes, another deal) that we would get a quick piece of pizza, then head over to ceramics rather than doing our traditional Olive Garden celebration. She spent over an hour meticulously working on her Tweetie Bird ceramic. I got the call about 2pm in the ceramic shop that the MRI was clear. Whew-did I say that already?

I spoke with the doctor at length today about Hannah's ongoing stomach issues. She threw up again this morning as we were just about to leave the house. It seems that some of the things we have been trying work for a couple weeks, then she goes back to feeling badly again. AFter much discussion, he said he believes it could still be a result of the pfs (posterior fossa syndrome.) Remember that term? Hannah's tumor was in the posterior fossa area of the brain-the back. Surgery sometimes causes kids to have varying symptoms like nausea, vomitting, loss of balance, loss of speech, etc. These can go on indefinitely. Some kids never experience any of this, and other kids have quite severe issues. If it's not the pfs, then it could be something gastro-related. 

We will try one thing at a time going forward to try and isolate the problem and a solution. If nothing works, we will then pursue this further with a gastroentenologist. Beginning tomorrow, Hannah will no longer take her anti-nausea medicine in the morning. I had cut the dose anyway before Christmas to only half a pill. Neither the higher dose or the lower dose seemed to have much effect. By Friday, we should be able to tell if there has been any change, this giving us an idea of whether it's working at all. She will still remain on the Prilosec at night and Miralax during the day. 

I hope to get the blood results back soon too to tell us if Hannah has any bacteria in her stomach that could be causing the issue. I asked the doctor to perform this test, and although he said that his patients typically yielded low results for this, he wasn't adverse to testing her. If it does come back positive, it's treated with antibiotics.

Well I'm in bed next to Hannah right now, so I'm signing off for the night. She wouldn't go to bed and kept wandering around the house wanting me to come in with her. Thank you so much for all of your prayers, wishes and messages both here and via email. We really appreciate your love and support.


Monday, February 9, 2009

Another MRI day tomorrow. Tomorrow is Hannah's cranial MRI. The DEAL day.

Hannah has made a "deal" with anyone she could get in contact with that would listen. I think she made a deal with Mom, Dad, Grandma, Grandpa, Uncle Mike, Aunt Paige, Aunt Susie, Aunt Kathleen and Mrs. Wilcenski this time around. If you haven't been hunted down for a deal, consider yourself lucky (this time.) This started with Dave and I offering her a deal to stay still during the MRI. Hannah has always hated the needles, iv's and port accesses during this journey. It's been one of the most difficult things for her. And there were many many sticks along the way. She got to where she would scream and kick and bite when she had to be stuck. That's when the deals started. When they get ready to put in the needle, I try to keep her focused on the deals. I go through the list of people, I ask her what she wants to do with her deal money, anything to distract her. She doesn't know yet that they will be drawing blood tomorrow. I'll tell her when we get there, but I don't want her to focus on it now. I hope they can draw the blood, then push the contrast, then take the iv out. I'm hopeful, but I don't think it will happen that way, just due to the coordination of getting someone down to MRI to draw the blood. The contrast is pushed about halfway through the MRI. First they scan her without the dye, then the do the same scan with the dye so that they can compare the two.

Hannah's last cranial MRI was August, since they alternate cranial with spinal. Oh boy. We're nervous for this one. Is nervous the right word, or really really scared? Maybe both. I try not to add up or keep track of some of the symptoms she has been having, but I can't help it. No-one has been able to explain the eye pressure she has been having. No-one can explain her periodic morning vomiting (again last weekend.) No-one can explain why she told me last week "I'm dizzy."

I just keep thinking of this past September when Colby and Hannah and I went into the city to meet with three other medullo kids and their families. We met Coleman and Caden with their parents, my friend Nancy (Jacob's mom) and Jacob's brother Ben and Zachary White and his mom. Four medullo kids together hanging out for the day in central park. Since September, two of those kids have died and the other one, Zachary, has now relapsed. Hannah is the only one out of the four that is still tumor free.

I hope and pray.


Friday, February 6, 2009

And another one to heaven today. We have fallen in love with this little boy, Brave Will.


Wednesday, February 4, 2009

We've lost another good friend. kasey radford.bmp
Kasey had been struggling lately with tumor growth, and had a massive brain bleed last night. Please stop by and offer his family prayers and love HERE