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!!

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.

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.

The Carly Shay Song

We are experiencing semi-normal life right now. Until the second week of Febuarary, Hannah only has chemo every ten days. On the days in between, she seems almost back to her pre-cancer self. I have missed her so much.

Her most prevalent side effect right now seems to be nausea. We are able to keep that in a tolerable range for her most of the time. That said, Hannah did throw up into her dinner plate at the table Tuesday night. You should have seen the boys reaction! It was a deal breaker for them.

I have been able to focus more on work (which is a good thing) and Hannah is working on cleaning her room up without a tsunami size fit. :-)

Her last doctor appointment went very well. Her ANC is soaring up there at 2100. Her weight went up considerably. Thank you, tuna noodle casserole. She loves it. Last week she ate that every single day.

I am posting a video of my random and hilarious Hannah. She got all dressed in rocker clothes and sang me a song about Carly Shay, the star of ICarly. When Hannah casually tossed her glasses down, I thought I would have to stop filming from laughter.

Ok, I have been trying to load this video for DAYS!!!! After forever goes by, it says Blogger.com could not be reached, trying agian. Also, I tried to load it this morning and before you can hit ok on the load the video button it asks you to accept the terms of service. I clicked on the terms of service. It directed me to a page that said, invalid request. So, I clicked the upload button without accepting and it flashed a warning sign saying I had to ok the terms of service that I can't read! AAAHHHHH!!!!

Update: I got it to post. YES!

MOG Redemption

Hannah has had a great week. She was struggling with nausea and unable to eat until a couple days ago. We found the magic of tuna noodle casserole. Really. She loves it. She ate an entire four servings of it yesterday! She has a spinal tap and weight check on Friday. With all she has been eating, I almost can't wait to see the number.

Right now Hannah's ANC is pretty high. Up near 2000. If there was ever a time to get her out of the house, it is now. Also, I have a few memberships that I would like to get some use of!

We went to the Point Defiance Zoo and Aquarium (thank you lovely Smacna crew) with Mackenzie and the ever adorable Cadence on Saturday. It was really cold, but it didn't stop us. Ok, after two hours it did. We had a fantastic two hours, though.

The walruses are my favorite. It is the mustache. What aspect of sea life requires the mustache? How did that develop? Or maybe walruses are just trying to look more sophisticated. Either way, they sure did want to see us.



Next on the list was the Museum of Glass. The first experience there was lacking, to say the least. However, since I went and bought a membership, we had to go again. I am happy to report that they have completely redeemed themselves.

We were informed upon arriving that we could go watch them making the glass in the hot shop. We hurried in to find a large room with seats and a sort of sunken stage. Down on stage there where several men working and a woman with a mic narrating the process.

Hannah said Hi very loudly. The woman thought she had a question and stopped talking to ask. Hannah proceeded to introduce herself as if she was at an AA meeting for cancer victims. She said "My name is Hannah and I have cancer". I'm not kidding. The lady reacted so well. I can't remember what exactly she said, just that it wasn't as awkward as that could have been.

Then, one of the guys, wish I knew his name, asked us to come to the front row. He had a small ball of glass on the end of a stainless steel stick that he had just put in a VERY hot oven. He told Hannah to watch the ball and with little tweezers started to shape it. Before we knew it, a tiny horse appeared. Talk about impressive!

It takes awhile for these things to cool, so on a piece of glass that is best described as sand dollarish, he inscribed "To Hannah Love MOG" on the back and gave it to Hannah. It was such an awesome moment for her. She said thank you and then interrupted that poor lady one more time to see if it was ok to take home. When we left she waved and said good bye to each one of the staff.



What a great group, the MOG staff, turned out to be. It is so moving to see how touched someone can be and the way they respond to what Hannah is going through. I think we have been fortunate through this, in that we have met many, wonderful people, just like that. People who have been willing to help without asking, or offer support, love and prayers. It does make a big difference.

Weight Check Wednesday & Snotty Museum Girl

Hannah has a chemo appointment tomorrow. They have also scheduled her to have a feeding tube placed unless her weight is up. Here we go again.

We went down this road during the last IM phase. Something about the combo of Vincristine and Methotrexate really kills her appetite. That said, she has been forcing herself to eat more this week. She HATED the feeding tube. I think, she just might make it.

She has been feeling pretty good all week and really wanting to do more than hang out at our house. So, for New Year's Eve, we went to the Spaghetti Factory, (eating is awesome) and we went to the Tacoma Glass Museum. Unfortunately, when we arrived they informed us that there was only 30 minutes left before they closed. Holidays. It didn't really make sense to pay for the whole crew and only get to be there for 30 minutes.


Hannah was so excited. She wanted to go in. Her ANC was up, she was feeling well, and we were already there. We asked if perhaps we could get a discounted rate just for the short duration we would be there. The snottiest woman I have encountered in awhile told us in that, too bad so sad, tone, that it wasn't an option. We could, however, pay the entrance fee and go in.

Sometimes, I am just so stubborn. I bought a membership. Problem solved. We could go in, and the money not only wouldn't be wasted, it would ensure we could go lots of times. Two trips to this place would have been the cost of membership, anyway. Plus, I did read in the little brochure, that there are glass sculpture projects for kids and it is indoors for godsake! You can't have enough indoor places to go around here. If you can't tell, I am trying like crazy to justify that decision! That wasn't in the budget, at all. Sigh. Look at this face, though. What are you gonna do?