Favorite Hannah Picture

Favorite Hannah Picture
"Yes, the park!"

Hannah Ballerina

Hannah Ballerina

Play Time

Play Time
"Go super fast!"

Hannah's Room

Hannah's Room

Happier Hannah

Happier Hannah

Hannah sleeping 4-13-10

Hannah sleeping 4-13-10

Preschool Friend's Art

Preschool Friend's Art
Yeah! Friends!

Monday, February 28, 2011

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.

Friday, February 25, 2011

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.

Wednesday, February 16, 2011

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!!

Sunday, February 6, 2011

I Need A Time Machine

I love this picture. I laugh every time I see it. Do you see the look Hannah is giving Aaron? It looks sweet. Adoring even.

Aaron, is sweet. He has a beautiful soul. Aaron is having a loving, cute moment with his sister.

What you don't see is the end of Hannah's shovel. It has some mud. Not alot, it is slipping off. However, that shovel has enough mud to fulfill her plan.

She is going to fling that mud at her brother. And she does in the next second. He doesn't suspect a thing.

That look? Pure mischief. Absolutely, one hundred percent, Hannah.

I want to crawl back into that picture. Back before cancer. Before I even knew your baby could get cancer. Before I was endlessly researching side effects and balancing them against survival. When I didn't have to look at my girl, the smartest little girl, so full of life, and wonder.

I didn't edit the other post yet. I will, I am still researching and so up to my eyeballs in more medical terms. I may be over thinking the whole thing, but every question I have leads to even more questions. I will get some more information from her doctors on Tuesday and then I have a meeting to discuss all of this on February 18th.

What I want is information that is not normally released or even gathered at Hannah's point in treatment. I am meeting some resistance, but the answers matter to me. I will post, at some point, a more readable explanation of what is going on.

Wednesday, February 2, 2011

A Big Decision To Make

I have had some news to share for about a week now. I have a couple of acceptable reasons for being late with this. I am drowning in work right now (not such a bad problem to have), the news is extremely medically detailed, and the real problem; it is good news wrapped in very hard shell. It is good news that also makes me sad. I feel like cancer has come around and punched me in the face.

Here are the facts. I will do my best to make this readable. :-)

The treatment plan Hannah is following is a clinical trial study. It is specially designed for children who were originally standard risk, then didn't respond to chemo. Most patients have zero cancer left at 29 days into Induction, the first phase of treatment. Obviously, Hannah did not. She is now on the high risk arm of that study. That plan was taken from a trial designed for kids who were high risk from the start. Age and presenting white blood count are the main determining factors for this group.

That high risk study was cancelled last week in favor of another study for high risk kids due to "far superior results". COG, the group of oncologists who make the studies, are considering it unethical to let the other group continue on, while there is a treatment plan available that is working so well. The study plan that works differs from ours in that they use a dramatically higher dose of the chemo drug methotrexate, HD Mtx for short, vs our study which uses the capizzi method of an escalating lower dose of Mtx. In our study, if your child's ANC was at 750 or higher, during the Interim Maintenance phase, they would receive increasingly higher doses, not to exceed 350mg. In the HD Mtx study during the IM phase, they receive 5000 mg of methotrexate. It is making a huge difference in their incidence of relapse.

In order to give that dose of methotrexate, without it being lethally toxic, patients are admitted to the hopspital for 3 to 4 days, hooked up to a round the clock IV and given a "rescue" drug shortly after the huge dose of Mtx. Methotrexate is a folic acid blocker. The rescue drug, Leucovorin, is a type of folinic acid, that can help the bone marrow and the stomach from the toxic effects of methotexate. It works because it is a form of tetrahydrofolate, the end result of folic acid in our bodies, that does not require the conversion action of dihydrofolate reductase, which Mtx blocks. Ok, that is confusing. It will have to stay for now due to time reasons. I will edit this paragraph later, promise.

Hannah is already finished with both phases of IM and heading into Delayed Intensification 2. What COG is recommending, is that we consider adding a HD Mtx phase to begin when DI2 ends. The choice is ours. Keep her on the plan that has all the relapses and hope she is not one of them or try the HD Mtx route with all it many and horrific possible side effects. Not to mention her quality of life this summer. Going from the DI2 right into eight weeks of HD Mtx is going to be more awful than I have words for. However, the potential alternative to is just unthinkable.

In the end we are lucky to have the opportunity to move to a study that is working. I will have to work out the mushy emo reactions separate from what is really best for Hannah's long term survival. It is heavy to say the least.