Done With Red Devil; On To Headaches

Hannah finished the first half on Delayed Intesification 2. The main chemo for that is Doxocrubicin, or as it is affectionatly known; The Red Devil. It is red, can make you sweat, pee, or cry red. It can cause serious heart problems so there is only so much one can have in their life. Hannah actually did better with it this time around. She has had more side effects this time from the Vincristine than anything else. For the second week in a row, Hannah's reflex's from knee down, when tested, were zero. It is something called peripheral neuropathy. It causes her to lose the ankle jerk reflex, which they call "foot drop syndrome". All that said, she doesn't seem too bothered by it, except for the taste of the medicine!

The second half of DI 2 involves the chemo's Ara-C and Cyclophosphamide. For the next two weeks she will go to Children's for five days in a row, two days off, then five days on again. They are long days in a chair getting meds that give her a tremendous headache. This time, however, her doctors are taking steps to help decrease the pain. They are going to run the chemo drip half as fast as usual, give her extra IV fluilds, and order up doses of oxycodone to have on hand.

Today, Hannah had Methotrexate intrathecally. The whole procedure went perfectly smooth. She woke up happy, which I am always grateful for.

Hannah has been such a little clown over the last week. I have about a million funny stories I have been meaning to share and great pictures to post. But...my brain is mush. Seriously, by the end of the day for the last week or so, I sit down to type and then, mush. I will try again a little later. For now, here is Hannah in the hat her Uncle Brett sent her. The whole Children's staff was commenting on it!

>

Button Update-Thank you all for weighing in on the buttons. I was going to go with the picture of her in the pipe and then my friend Sarah sent me an email. A friend of hers fixed the picture of Hannah at the park so that is wasn't so blurry. I have decided to leave them both up. Yeah, indecision as a decision! hee hee

Which One Do You Like?

Thanks to The Empress over at Good Day, Regular People, I have learned how to make a button for Hannah's blog. Let's just say, it is not easy. Or, at least, it wasn't for me.

You see, my all time favorite picture of Hannah is the one at the top of the blog. You actually might already know that, as it is titled, "Favorite Hannah Picture". Anyway, as a button, it needed to be cut down to 125 x 125. Super small. It looks all blurry to me.




I don't know if I want to give up on it, though. I took that picture upon arriving at one of her favorite parks in Seattle with my cell phone camera. It was her reaction to seeing where we were. I just happened to have snapped at the right moment.

That photo is her story. It is a pure rush of joy. It encapsulates her ability to to experience every moment life has to offer without reservation.

It is, however, already on the blog, and a very blurry button. The other picture cropped a bit better. Plus, the colorful splash of pink Hannah inside the gray spiral pipe has always struck me as visually appealing. Or, as Aaron puts it, "That looks awesome!".

We were at a pumpkin farm. She had a great time. It was pre cancer. It is how I remember her. The steroids have changed her cheeks a little. I love them, don't get me wrong, it is just a difference I can spot. I know this sounds sappy, but I can't believe I didn't take more pictures. There won't be anymore of how she was.

What do you all think? Which one makes a better button?

A Vigilant Muse

Everyone, this is Mugdha. She has a blog called A Vigilant Muse. She is a college student, majoring in biology, I think. Total smarty pants, in a good way. I am a sucker for science. She also is clearly into fashion and often posts pictures of a cute outfit she has put together. Hannah and I love it. I think she is a wonderful role model. She is someone you can point to and say, This is Winning. (shameless Charlie Sheen quote, I know)

Hannah and I were scrolling through her blog tonight looking at pictures of dresses she has posted when I found her post from Feb.8. I don't know how I missed this one. Apparently, Mugdha, in the mist of studying is also doing the Relay for Life with the American Cancer Society. Which, she has done for the past SIX years! In her blog post, she says she always keeps a couple special people in mind and this year, Hannah, is one of them! How amazing is that??

Here is a link to her blog post. It has a link to her Relay Web Page to donate if you would like to help her reach her goal.


http://a-vigilant-muse.blogspot.com/2011/02/relay-for-life.html
Ok, I tried to use my link button (I have done this successfully a couple of times) to link to her page, you know, the underlined one, so you can just click and go there? It won't work! GGgrrr. For now, I put up the one you can copy and paste. If anyone knows how to do this, I would be so grateful.

Little Bits of Life

Last Friday, I met with one of Hannah's oncologist's, Dr. Blythe Thomson M.D., to discuss Hannah's new treatment plan. It was a chance to run by the team what I had been researching. I found a couple of things that would help lessen the side effects of the High Dose Methotrexate, HD Mtx. We got the go ahead to try both the Glutamine and the Nuerontin. Hopefully, it will help Hannah avoid some of the harder to deal with side effects. I am crossing my finger and toes through the next phase!

Hannah is still in DI 2. She is only a few weeks in, so her counts are on the way down, but not completely crashed. She has some energy and is in a good mood almost all the time. I don't know where she gets it, I am burnt out!

Our family has been doing a lot of low key things, trying to fit life in around low counts.

Learning how to play "Angry Birds".


Getting all tatted up.



Hanging at Rian's, where, apparently, no one wants their picture taken!




Watching Aaron, in his role as a singing football player, in his school play.

One Big Kiss

Jackie and Bender are planting a BIG one on sick kids. They are DJ's at our local radio station, KISS 106.1. They spend a couple days each year doing a radiothon to help raise money for Seattle Children's Hospital. This is their 10th anniversary! That's alot of kissing. They will be broadcasting from Children's March 2nd and 3rd. If you would like to help them with the smooching or to reach their goal of 1 million dollars (insert Dr. Evil voice), I have three suggestions.

1) Online auction. The bidding has begun in our online auction. Some cool autographed items and experiences up for grabs and more stuff being added so check it often to track your items. View the items here: http://shop.ebay.com/seattlechildrenshospital/m.html?_trksid=p4340.l2562

2) Online donations. Here is the direct link to the secure donation page on the Children's Hospital website: http://secure.seattlechildrens.com/radiothondonation.asp

3) Texting donations. Make a $10 donation via text. Text the word CARE to 50555

Seattle Children's is where my Hannah Banana is being treated. It is basically our second home. My original intention was to write something meaningful about the place and it's staff whom I am trusting to save my daughter's life. Words did not seem to capture what that means to me. Instead, I am giving you a view of almost a year at Children's fighting cancer.

Showing Cancer the Door

Big pink panther from Rob @ Owens Corning, one of our insulation vendors.


I believe my co-worker, Barb, summed up the decision the best. "Do you want to get hit hard? Or do you want to get hit harder?"

At the end of January we were presented with a choice to make regarding Hannah's treatment. It felt exactly like what Barb had said.

So after almost a month of research, crying, praying, facing down demons called cancer, and a bit more research, it came to me.

I want to show cancer the door.

We are going the high dose methotrexate route.

Just in case the post I wrote on this previously made no sense (I know, it didn't), here is a review of the situation.

The treatment Hannah's plan was based on; cancelled. The plan Hannah was on used an escalating lower dose of methotrexate during the Interim Maintenance, IM, phases. The second plan used, instead, a very high dose of methotrexate, HD Mtx, during the IM phases.

Turns out, the HD Mtx had results so far superior that the doctors who design these treatment plans, COG, considered it unethical to let our kiddos continue on the less successful study.

The HD Mtx study was increasing the event free survival rates by 6.5%. For us, that is a very real, very big number. Hannah had just finished her last phase of IM using the escalating low doses of Mtx. Her oncologist presented us with a choice. Finish her treatment plan as is, or add the HD Mtx to the end of her next phase.

It seems like a no-brainer. Stay on the study where the kids are relapsing, and hope she isn't one of them, or move to the high dose treatment that seems to be saving lives. One second decison, right?

Wrong. There were so many factors to consider. For time and space reasons I am only going to discuss the most important ones. First, the difference in dosing is significant. The highest amount of Mtx she had before was around 320 and that made her sick! The high dose amount would be 5000mg. She would need to be in the hospital for three to four days to receive it so they could monitor her and give her IV fluids. To help with the toxicity of this drug, Hannah would be given a rescue drug, Leucovoen, around 42 hours after the methotrexate.

The side effects of methotrexate range from uncomfortable to unthinkable. Mouth sores top the list of common. I think we could handle that. There is the usual list; diarrhea, hair loss, skin rashes, headache, backache. After that; pancytopenia, liver damage, renal failure, kidney damage, limb weakness, loss of memory, behavioural and cognitive issues to name a few.

The real concern, is that this chemo drug crosses the blood brain barrier. Neurotoxicity, is the side effect that keeps me up. Hannah is so bright, so smart. Annoyingly smart. I see some of temporary memory loss she struggles with already. It breaks your heart. I don't know if I can watch her light dim. To watch her struggle under a fog, with the memory of how she was, how she might have been.

There were other questions. Since we have already been through two IM phases, are we too late? Would this actually make a difference for Hannah? (I was told, it would improve her odds)

Then, I got the email from a friend of mine whose child had relapsed. They are preparing their goodbyes.

Sometimes when I think too much about the side effects I get lost. I don't want any of those things. I forget the fight is against cancer. If Hannah were to relapse, the side effects of high dose methotrexate would be the least of my worries. This is war and I want as big of an arsenal as possible.

We are being given a chance that doesn't happen very often. If this is what it takes to keep cancer out of my baby, then, we move forward. Our summer is going to suck. Hopefully, it will allow us to have many more.

She Made Counts

Hannah's blood and overall immunity counts were high enough yesterday to begin her last phase in year one of treatment, Delayed Intensification 2.

It is a very aggressive phase and will last two months. After making counts, they took her right over to have a back poke with chemo in her spinal column and chemo through an IV after that. The chemo in DI2 is brutal.



Last night she was super sick. I finally got the right amount of anti nausea medicine in her. After that she just laid still. She looked a little out of it but still wanted to watch Alvin and the Chipmunks.

I cannot express how much my girl loves to dance. There is a part in the movie where the Chipmunks are on stage dancing. Normally, that is her cue to get up and dance along.

The moment comes. Hannah looks at me and almost as a question, says that she has to do this part. Has to. Of course. So, there she is, feeling terrible, shaking it along with Alvin.

Hannah has the most amazing ability to squeeze fun out of any given situation. I LOVE that!!