Hannah Grage

We Are Back From DisneyWorld!

2011-10-18T07:02:00.000-07:00

I have so many photos and stories that I can't wait to share. We have 129 photos coming from Disney, but it takes two days. Some of those are amazing.

This is Hannah driving her own car in Tomorrow Land. She was so cute! She kept saying "My car; I'm driving!"

Hannah Gets A Wish!!

2011-10-05T07:51:00.000-07:00

Make A Wish has granted Hannah a wish. When they asked her what one thing she would want, she didn't even pause. "To see the princesses!" She didn't know of Disneyland or Disneyworld, then, she was just four years old when first asked. MAW decided that would best be done at Disney World. We get to stay in the Give Kids The World resort, which is set up for MAW kids. They serve dessert any time, so you can literally have ice cream for breakfast!

Hannah at her Make A Wish Party

We leave Saturday morning for a week in Florida. Hello sunshine!! The kids and I have never been to Disneyworld and we are SO excited! I will take a ton of pictures!

The best part is that Hannah's birthday is on Sunday and we get to celebrate it at Disneyworld with her favorite princess! For Hannah, this is the best thing in the entire world to happen to her. After the hell on earth this summer's chemo was, it actually makes me tear up thinking of how happy she is going to be. The Make A Wish people are angels.

School Troubles

2011-10-02T08:49:00.000-07:00

Hannah has started Kindergarten! She was so excited! Big kid school like her brothers. Finally, getting to play with little kids again. There was so much talk about what friends she would have and if she could invite friends for sleep overs. I was struggling a bit with having my baby go to school. I now have all school age children. Weird.

Hannah's hair has grown in so much in such a short time. I think it looks like an adorable pixie cut. It has also grown a different color! It is far lighter. She used to have hair so dark brown that is sometimes looked black. Now, she seems to have a light ash brown color.

Unfortunately, for Hannah, what the kids at school noticed most was, she has very short hair. She was coming home every day telling me of something else a child had either done and said to her that was hurtful or mean. The chants of "Look, it's a boy in a dress" hurt the most. Luckily, the teacher we have this year, is just fantastic. She has been very helpful. Hannah is learning to trust her, that if she tells, it can be made better. I called the Leukemia & Lymphoma Society and they sent an information packet with a Charlie Brown video for the kids to watch.

We watched the video in class with the kids. It was short but effective. In the video you see a little girl discover she has leukemia. When she is able to come back to school, she is bald. A boy on the playground starts making fun of her and the other children come to her aid.

We had a discussion afterward where the kids could ask questions. I was so pleased to see what an impact the show had made. There where lots of questions about why hair falls out. One boy raised his hand to tell me, he thought the mean boy in the video was a bully. That got other kids asking why someone would do that. This gave me a chance to tell them how some people react to new or different things by making fun of it. I explained that it is important to think about how someone might feel about the things you say or do to them. That same little boy ( thank god for this kid!) said, "Just like when the kids tease Hannah?". After I responded, yes just like that, he looked around the room and said "Well, I hope they don't do that anymore!" Ahem!

This was just last week, so I will have to wait and see if this was enough to help. Hannah does have a some friends in class regardless of the other issues and hopefully now, a little more understanding.

Little Bits Of Sunshine

2011-09-01T13:25:00.000-07:00

That title could easily describe our summer. Tonight is, after all, the finally of our summer. Here in Seattle, we only had bits of hot weather for the entire thing. Very maddening, especially if you feel warm only when it reaches 80 degrees. We struggled to have days hotter than 73.

However, I am not referring to the day time temperature in that title. The Sunshine Kids (http://www.sunshinekids.org) is an organization dedicated to helping cancer kids get rid of the dreary that clouds their lives and feel some fun. They arranged a night out to the 5th Avenue Theater here in Seattle to see Aladdin. Hannah and I were invited to go.

Hannah had such a fantastic time. She got all dressed up, gel in the hair and mom's perfume. She used her best manners and really was so perfectly polite. After the show, the Sunshine Kids got to go down and meet the cast. They were all wonderful. Hannah's eyes filled right up when the Sultan asked if she wanted to meet Princess Jasmine. She had been admiring her earlier, exclaiming that it was a "real live" princess. It was one of those nights you hope you remember forever.

I am going to write another post in the morning, or add on to this one, about how Hannah has been feeling, but for now, I am going to bed. First day of school tomorrow!

Long Term Maintenance

2011-07-31T10:54:00.000-07:00

Striking a pose!

LTM is a whole lotta pills! She can't swallow pills yet, so there is quite a bit of cutting, crushing, and mixing. I am pretty sure I could be a full fledged pharmacist!

The fact that all this is done at home has changed everything. Our time is not broken up between hospital and home. We spend less time talking or thinking about needle pokes, hard chemo, and navigating side effects.

This freedom is so alluring. We can't help but feel done with cancer. Yet, everytime I turn around, I am still having to tell Hannah, No. We can't do that, yet. She still has a port to protect and she still has to watch for germs.

Which, is why Rick, at Metro Parks is our new rock star. We discovered an awesome splashground park right next to (so close, how did I miss it before?) our house. It looks new and so enticing. Big grass area, new playground equipment, a zip line, and finally a huge section with different things spraying water. Hannah went nuts. I sighed. I had to tell her we might not be able to do that. Depending on how they treat the water, it might be a, No. She handles these disappointments so well, it makes my heart hurt for her. I promised I would find out.

I called Metro Parks the very next morning. It was a Friday. After some shuffling around I was transferred to Rick. I explained our situation. All said and done, he called back three separate times within about a half an hour. He got me every single detail about how the water is cycled and treated. With every chemical by name, amount, and time it is used. He gave his personal cell just in case Hannah's doctors had questions. Guess what? It was safe enough to go in. We played all Saturday. Thank you. So much.

Aaron in the middle with the mohawk.

Hannah and Andrew

Greener Pastures ahead!

2011-06-30T05:39:00.000-07:00

Hannah completed all four doses of the high dose methotrexate. Given that she didn't start this phase of aggressive chemo until she was already a year into an already blistering chemo schedule, it is quite amazing! Several times in the course of this we thought she would not be able to continue. The side effects threatened to be almost too toxic to bare. However, each time, right at the crucial moment, she would pull through.

We are now done with scheduled inpatient stays at Children's. The next phase of treatment is called Long Term Maintenance. Ahhhh...sounds so good. For us cancer mom's, that is the one you are waiting to hear. Next to all done, of course. This phase involves chemo taken by mouth every night and a once a month visit to Children's for chemo in the spinal column (back poke).

Once a month did you say??? Yep, sounds like heaven to me too!

LTM will last a little over a year, but is supposed to be far easier. Our lives should, I am told, go back to semi-normal. It is enough to make you cry.

She will start this phase tomorrow if she makes counts. I'm not entirely sure she will. Which would just mean another week no chemo while her body recovers.

Hannah is in great spirits. She is still my miss sassy pants. Most of the time I would swear she was entering her teen years. Super lovey one minute, all drama the next.

She has discovered her box of summer clothes and collection of bathing suits. Now, all of a sudden, her swimsuits are all she wants to wear. We are in Seattle. It is not exactly warm here just yet.

The other morning, at 6am, she comes in my room, bathing suit on, and asks me to set up the sprinkler in the front yard. "Now??" I ask. She replies with nothing but a "Yes". I just can't imagine what she is thinking. It was cold in the house, let alone outside, in water! So, I say, "Baby, it is raining, and it is six o'clock in the morning, not exactly outside time." She looked stunned, shouted "FINE!!", stomped to her room, and slammed the door.

Aahhh, teenagers. Wait, what? Oh yeah. She is just five.
Wouldn't change a thing. (If you could see me, I'm smiling, big.)

Overdue Update

2011-06-18T13:07:00.000-07:00

We are in Children's for her 4th and last dose of the High Dose Methotrexate. This treatment phase has been really rough. Every single time we are in the hospital there are new and old challenges that kick our butt. Also, living between the hospital and home week on and off is unsettling and stressful for everyone. I can't wait to unpack, with the knowledge that I don't have to repack a week later. These are the times that I wish for a giant STOP button to push. It would be great if work, family, life, and cancer fighting could all take a time out, for just a moment, so that we could breathe.

That complaining aside, this dose is proceeding along. She got a slight fever this afternoon and is battling nausea something fierce. She mostly wants to lie still with no noise. We are roommates with an infant this stay, so it is difficult to give her the quiet part. He is a super cute baby, though, and the family couldn't be nicer.

Hopefully, we will be done with this round Monday or Tuesday and able to go home. Almost there. One day at a time.

2nd Dose Done

2011-05-31T20:31:00.000-07:00

Say that title three times fast! Ok, wait, I just did it and it was easy. Nevermind.

This is going to be a long post. If you do not want the play by play, here is a summary. She finished the 2nd dose of Mtx. It went horrible, but she did it. She did not get mouth sores again this time and we actually had a hospital free weekend for memorial day!

So, last Friday Hannah started the 2nd dose of high dose methotrexate. I was nervous to start it again so soon. She hadn't even been home for a week from the last hospital stay. That one was just from the side effects of the first dose!

The first day went perfect. They hooked her up to a saline drip and she quickly produced the necessary amount of pee to start her methotrexate 24 hour drip. This time, Hannah was finally not in isolation. That means we were able to come out of her room. The cancer floor has a mini playroom and a bike riding area. It is really pretty cute to see little kids riding around the hallway's. Hannah loves to see into other kid's rooms. She doesn't care at all about privacy!

She woke up on Saturday really grumpy. We made it passed that and then I did the unthinkable.

Hannah is hooked up to three different tubes that all go to a big medical tower on wheels. It holds the medicine bags and syringes that get pumped into her tubes. The tubes attach to the needle that goes into the port in her chest. We constantly tell her to be careful of her tubes. For the most part she is. If they pull a little too much, like if she is moving faster than you are moving her tower, or if she rolls on them in her sleep, they pull and it hurts.

Keeping this in mind, here is what I did. Hannah was sitting in a chair and raised her arms for me to pick her up. I did. What I didn't see was her tubes were caught in the crook of the chair. I lifted her up and the needle pulled right out of her chest. Luckily, two nurses were walking in at that moment. Methotrexate, not a drug you want anywhere on your skin or in surrounding veins or tissue, was spilling down her tummy into her belly button. It is really important that the needle pulled right out, instead of half out, half in. I didn't know this at the time. Our nurse was checking that out. I thought we should be stopping the Mtx from spilling down her bare skin. I yelled at our poor nurse. She yelled back. We were all scared.

Hannah was screaming "It's a bummer, it's a bummer!" over and over. It was such a mix of the cutest thing you ever heard and the saddest. She had a small cut from the needle underneath her port. We got that and the chemo drug cleaned up. The next hurdle was getting a new needle back in and the chemo, which is a timed deal, back on schedule! They determined the needle came out clean and gave us the go ahead. The problem was how to put the needle back in without numbing cream, as it takes at least a full hour to numb and 30 minutes for the fast stuff. The decided to do a lidocaine shot. It doesn't have a needle. You just press it down, it lets off a compressor sound, and boom; area numb! Hannah was a bit scared, but braved through it. Infact, she did better than me the whole thing through. I cried like a baby for about an hour after that. Tears just wouldn't stop. I felt so damn bad. You should have seen how great Hannah did, though. What an amazing girl.

Unfortunately, our stay did not get any easier from there. The last time Hannah was in the hospital she was on a morphine drip. She was still in the weaning process during this hospital stay. Based on Hannah's reaction to a narcotic they gave her previously, for back poke's, and the behaviour we saw during the last two hospital stays, we think Hannah might have adverse reactions to narcotics. Not having tied it all together yet, it was hard to see what we had coming.

Hannah had an almost base line of anger. Even if she could be distracted or had some good moments, almost any little thing would set her off. She wouldn't just get angry, she seemed crazy. You could have offered her all of Toy R Us during the middle of a fit and it wouldn't have mattered. She was lost to us. She would get so mad, she would be kicking and hitting and throwing anything or anybody. This happened several times a day and into the nights. The psych team was called down. They determined she needed less people around her and to give her space with nothing to throw near her. Without that, she started to pull her tubes, tried to tip over her tower, oh, and literally splash pee at her nurse. After the second day of this crazy, to protect her from herself, they strapped her arms to her bed. It only lasted two hours. It wasn't anyone's best plan and I think her nurses were as upset as me! However, her doctors are going over it all to have a real plan ready if she has a reaction like that again.

Because of the mouth sores, the gave Hannah extra of the rescue drug, Leucovorin. It helps the methotrexate to exist the body faster. On Sunday, they drew her labs and her Mtx level was at .79. It has to be .01 to go home. Monday they took labs and I though, why bother? She came back at .08! After the h. e. double hockey sticks the day before had been, I was SO excited to go home.

What I was really dreading was whether or not she would get those mouth sores. I don't know how we could have done another week on a morphine drip! Thank god a million times over, she did not get them very bad this time. A few on her tongue, but nothing hospital worthy.

As much fun as that was, you will be excited to hear that on Friday, if she makes counts we get to do it all over again. We are glass half full kind of girls, so I will say this; It is going to be better this time! So there, cancer! (I am sticking my tongue out in a very juvenile fashion)

Some of the better moments.

Back home for a bit

2011-05-17T22:30:00.000-07:00

Hannah got to come home this weekend. She is doing better. Still tired but healing. Starting this chemo after a year of heavy duty front line treatment is just punishing on already worn out bone marrow. However, we made it through the first round of HD Mtx. Friday morning, if her counts are good, she will be admitted for the second dose.

I knew this would be tough and it is. We are going to push through and get this done. She needs this chemo, as awful as it is.

I can't really elaborate more than this. I just break right down if I think about how things are going. I'm just going to concentrate on the goal. Please, pray for us going through the next round. Love you all!

Post Removed

2011-05-13T10:11:00.000-07:00

I updated about Hannah yesterday and now the entire post is missing. I don't have time to figure it out, but if anyone knows how to fix it, please let me know!

Hannah is still in the hospital. The mouth sores, which are little ulcers, have covered her tongue, gone down her throat and are throughout her GI tract. She has been in horrible pain and we have struggled to figure out where her behaviour is a reaction to pain medicine or an indication that she needs more. After several days it became clear she needed much more.

She is actually doing better today. Still a little cranky, but doesn't seem to be in as much pain.

Thank you all for your support.

She is still @ Children's

2011-05-12T12:09:00.000-07:00

I have to make this brief and will try to give more details later. Hannah is still in the hospital. She has really been struggling this week. We have had days too bad to talk about. The mouth sores (which are little ulcers) are covering her tongue, gone down her throat, and through her GI tract. It is horrifically painful.

Half our trouble is because she is so young. When in pain, she doesn't always vocalize, she goes a little crazy. She screams, kicks, hits, spits, pulls at her tubes, anything to change what is happening inside. She also has that reaction as a side effect to some of the pain medicine they give her. Figuring out how much pain medicine and which one to use has been a trial and error at her expense. This is going to sound crude but it fits on the most basic level. This all SUCKS!

The good news is her fever is gone. Also, she seems to be stabilizing on pain and erratic behavior today. Her counts look like they are trending upward so hopefully she is on the mend.

Thank you all so much for your continued support and prayers. We have needed them!

Heading Back to Children's

2011-05-06T09:20:00.001-07:00

Hannah has been struggling with stomach pain and mouth sores that cover the inside of her mouth and have traveled down her throat. Last night was so hard.

It is a common side effect of the methotrexate. The real name for it is mucositis and the sores are little ulcers that can occur anywhere in the GI tract.

It can be an extremely painful thing and if pain cannot be controlled by oxycodone, then she will need to be readmitted for a morphine drip. Her stomach pains could also be mucositis that have traveled down to her stomach. Sigh.

We are both exhausted. Hopefully, this will be resolved soon and she will be pain free. It is so miserable to watch.

Awesome News!

2011-05-05T06:52:00.001-07:00

Hannah passed the high dose methotrexate out of her system a day earlier than even her doctors expected! That is awesome news for Hannah, as the risk of side effects greatly increases the longer it takes to clear the drug. I am extremely excited about this!

Yeah Hannah!!!!!

I will do a proper post with more details this evening. Thank you all for your prayers and support.

Preparing For HD Mtx

2011-04-28T06:26:00.000-07:00

It is going to be ugly. Now that Hannah has finished DI 2, she will begin the new phase. Remember back in February when I was debating putting Hannah on the aggressive chemo that would give her a better prognosis but had all the nasty side effects? That's the one we are starting.

If she had made counts she would have started last Saturday. It is a five day stay as inpatients at the hospital until she clears the 5000 mg dose of Methotrexate. For once, I was actually very happy she didn't make counts!

From everything I have read, the kids who make it out of this with the least side effects have are the ones who process the drug quickly. There are some tricks, I found, to help Hannah do that. She needs to have good electrolyte levels, and her kidney and liver functions need to be up. At Friday's appointment, Hannah was a little dehydrated and her liver function was lower than normal. So, we gave her an hour of IV fluids right then and have been spending the week forcing Gatorade in her!

This dose of Methotrexate is also known to cause painful mouth sores. Having a super clean mouth can help lessen the amount so Hannah also got to go to the dentist this week. The only thing is that Hannah has to have good counts and an antibiotic an hour before going. There was a crazy whirl of doctors, pharmacists, and phone calls to make it happen! We did it, though, and Hannah was fantastic! She kept telling them she wanted SPARKLE teeth. Her dentist, started out with a normal tooth brush. Hannah told her that if she wanted to make her teeth sparkle she would need to use that, and pointed to the polisher!

Tomorrow we go in to check counts. If she is above 750 ANC, she will have a back poke, or spinal tap, with IT Methotrexate into her spinal column and then check into the hospital Saturday morning for the high dose stuff. I think we are as prepared as you can be. I am scared out of my mind and confident she will do well all at the same time.

I have been meaning to post these cute pictures of Hannah at the hospital when she had the virus. So, here you go, two weeks late!

Hanging in the ER, not so happy

Heading to our room

Playing

Oh man. So beautiful, makes my heart hurt.

Going home!!

It Was A Virus!

2011-04-14T06:51:00.000-07:00

We are home! Hannah finally cleared the 48 hour, negative cultures and 24 hours of fever free required to leave hotel Children's.

Turns out she has a virus. Metapnumovirus, which is a respiratory virus, is what was making her so sick. We would have been able to leave sooner, but during her red blood transfusion on Tuesday, she spiked a fever. Since that could be an adverse reaction to the blood being transfused, they had to stop the transfusion and run blood tests. The fever also meant that she had a new start time for the pesky 24 hour fever free rule. Luckily, her fever stayed away after that and she started to improve.

She still has the virus. It will take awhile to clear. She looks and feels much better now, though. She isn't all clammy anymore and is very excited to be home.

Thank you all so much for your support and prayers!

On to the prayers. We are saying a few more today. Hannah's great Aunt Chris passed yesterday morning after a hard fight against cancer. She was seriously, the coolest lady. Just saying that doesn't seem to do her justice. Please, just trust me on that. She was one of good ones. And there are so few.

Hannah's An Inpatient Again

2011-04-11T20:40:00.000-07:00

Hannah was admitted to Children's this morning with a temperature of 103, a headache and stomach pain. She needed an immediate platelet transfusion. Initially, we thought she would need red blood as well, but that won't be until tomorrow morning.
We don't know yet the cause of fever or pain. I am hoping simple virus. Regardless, she has to stay at Children's until she is fever free for at least 24 hours and if her tests come back negative after 48 hours. So, bottom line is she is here no less than two days.
She is handling this extremely well. Quite the difference a year makes. She even handled a nose flush with very little fighting this morning.
Her fever went down after some medicine for most of the day. Late afternoon, though, it came back. She was searing hot. Her plastic allergy band literally seemed to be melting on her skin.
I will update as I get more information. Please, say a prayer for her that this is just a easy virus and we can return home soon. Thank you so much for everyone's support.

Last Year

2011-04-07T05:31:00.000-07:00

This day last year was her last day of preschool. I didn't know that when I dropped her off. I didn't know that evening I would take her to Children's ER and she would never go back. Her life has changed so much. To be a normal kid playing with friends one day and be thrown in the crazy of hospital life with all the bad tasting medicine and needles...

My heart aches for the life she lost. I remember the first few days in the hospital she would press her forehead against mine and beg, plead with me to take her home. I couldn't. I couldn't take her home and I couldn't make it better.

Tomorrow is the actual one year of diagnosis. She was diagnosed at around 1:30 am. So, her diagnosaversary, as it were, is Friday. To me, it will always be April 7th. That is the day I took her to the ER and one in the morning does not feel like the next day if you haven't gone to bed!

I am really down today about it. I woke up with a lump in my throat. As weird as this seems, I actually have a special day (aside from a few hours getting chemo) planned for Hannah on Friday. I got her a present and we are going to do something fun. I want it to be like a little party each year instead of a date that makes us sad. She is amazing and I want to celebrate that. I want tomorrow to be a positive day. So, I am going to pull it together. I just needed to vent today. It's a hard one for me.

Love this picture

Tough Chemo and Other Adventures

2011-04-03T21:53:00.000-07:00

Yes, those are gloves on her feet. It is her newest thing. When the doctor is supposed to be telling me very important information, Hannah usually manages to interject. I made the mistake of really laughing, so, it's a staple now. That pretty much sums up how things have been. Rotten chemo, funny girl.

She has had a very up and down week. Lots of pain, lots of nausea, some constipation issues, and when not in pain; a great mood. The hard part is that there is so much more chemo in this phase. She is going to the hospital for chemo almost every single day and then getting a chemo pill every evening. It is too much to keep away all of the side effects.

Nights in a row this week she has been crying in her sleep. Pools of tears in the bridge of her nose. Friday night I was trying to help her with tummy pain. I had just given her two types of pain medicine and was getting her the warm blanket she likes, when she started yelling "It is going EVERYWHERE!". Confused, I asked what was, and through sobs she said, "The pain".

The good part is that she seems to be handling DI 2 far better than DI 1. She has a great appetite, even if she is super specific about what she will eat.

My friend Janelle came by Children's on Saturday. She brought Hannah two of her favorite treats from Starbucks. It was cute how excited Hannah was to see she was getting a cake pop and a red velvet whoopie pie.

She still has ample amounts of energy and seems to really enjoy any variance to the routine we can provide her. Here is a picture of her at physical therapy. She loves it! They do a great job making it all seem like a game.

It has seriously rained, no, downpoured, with the exception of maybe two days for the last month. Gray or cold, on those days we have to get out! One of those days we trekked up to Fort Nisqually. It was a fur trading and farming post in the 19th century and now it is a living history museum. I didn't expect it to be as big of a hit as it was. They had a great time!

Today was the other gray and cold day. We decided to make it a hiking day. Hannah still had chemo at around lunch time. We grabbed sub sandwiches and made it our pitstop for a picnic. Which, would have worked better without cable. How can you fight the power of cartoons?

After our "picnic" we hiked along the waterfront trail near the Arboretum. The pathways were very muddy but with rain boots, no one cared. Hannah did the first half of the hike on her own and rode in the backpack for the second half. The floating bridge was the coolest part. It is a fairly long foot path bridge that moves with the waves. Good to know, as the first time I stepped on it, I thought I was having some wicked vertigo!

We finished the day at a new place in Fremont called, quite simply, Pie. They serve little individual pies that can fit in the palm of your hand. True to form, Hannah tried and denied two different pies before deciding on ice cream. The rest of us, however, we were in love. Aaron's lemon meringue was amazing.

Tomorrow, Hannah has another back poke. After that she gets a break from Children's until Friday. Yay!

Done With Red Devil; On To Headaches

2011-03-25T14:32:00.000-07:00

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?

2011-03-12T17:04:00.000-08:00

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

2011-03-09T19:32:00.001-08:00

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

2011-03-07T20:34:00.000-08:00

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

2011-02-28T23:05:00.000-08:00

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

2011-02-25T22:19:00.000-08:00

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

2011-02-16T05:36:00.001-08:00

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

2011-02-06T05:47:00.000-08:00

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

2011-02-02T04:54:00.001-08:00

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

2011-01-20T22:45:00.000-08:00

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

2011-01-12T19:04:00.000-08:00

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

2011-01-04T22:47:00.000-08:00

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?

Cupcakes and Super Human Strength

2010-12-30T12:50:00.000-08:00

Those two things don't normally go together but that is how the week has been. Yesterday, Hannah was making cupcakes for mommy. Super cute. They tasted awful. Couldn't begin to describe.
Please don't tell her.

The day prior was a chemo day. Now that we are in the phase IM, we only go every ten days. I forgot how much more resistant to being at the hospital this makes her. It started out fine. The boys came too and everyone was engrossed in Sponge Bob while she had her exam.

The doctor went over the exam with me. Her ANC is still good. Platelets are down, red blood cells steady. Her weight is down. Might need a feeding tube next visit. We handled all this fine. Then, the nurse came to take us to the infusion room for chemo.

This triggered a fight or flight reaction in my youngest child. She started mildly pleading not to go to that room. Then screaming. Then screaming, kicking, hitting, and spitting. Screaming she hated that room. Screaming she would not go in to that room. Still being in the room obviously meant more drastic measures were needed. She threw anything near her. Her cup of water? All over the floor. Clawed at me when I tried to get ahold of her.

In her final move before I got a good grip on her, she tried to hurl a giant brown trash can that held all of the used chemo syringes. Of course, it is far wider around then her little arms could grab and almost as tall as her. I couldn't believe she was even attempting it. It all happened so fast. She didn't get much height. Really, it was more of a knocking over of said trash can with a bit of sliding across the floor thrown in. And then I had her.

The boys sat frozen, mouths open. The nurse took only a pause before lending a helpful hand. (they have seen it all) I was so many things; angry, embarrassed, so deeply sad for her. I felt bad for the boys and the nurse. There isn't time for that. Hannah needed her chemo. She calmed down when they started. It didn't take long before she felt sick. She was right about the room.

We went home. I felt dead. Some days are so damn hard.

The next day at work I was telling Galen what happened. He pointed out something I hadn't thought of. I was thinking I should not have exposed the boys. He suggested that it might bring a greater understanding for them. After Christmas, I think Aaron was all ready to sign up for this cancer thing. Sure you lose your hair, but random people are nice to you, send presents, and you get to eat lots of normally off limit food. Maybe getting to see a little of what she is dealing with, will help him deal, too. Or, it will cause deep psychological damage that can never be undone. I don't know! I hope not.

Bouncing from this day of trauma back into her normal, cute little five year old life is remarkable to me. I am still exhausted! However, this is how cupcakes and super strength go together over at the Grage household.

Holiday Highlights

2010-12-28T06:39:00.000-08:00

Here is Aaron and Hannah on Christmas Eve at our church. I can't believe how much taller Aaron is! This night is the first time Hannah has gone back to our church, Church by the Side of the Road, (love that name) since she was diagnosed. In a sort of indirect, Christmas miracle type way, Hannah's ANC was up to almost 2000 and we were able to go. She loves going to church. Her favorite part is all the singing. At our church? They can sing!

During the hospital stay when we were first told she had cancer, Hannah had a song we call, Yes, Lord, (the real name is something else) stuck in her head and would go around singing it. As she couldn't get to church to hear it, they sent her a CD recording of that song. It is in my car to this day and we listen to it, by request mind you, on the way to get chemo. It is a song about trading your pain for the joy of the lord.

She also really loves our Pastor. Infact, for a long time, she thought he was God. Pastor Proctor came to visit her at the hospital and she kept saying God came to see her. That was pretty cute. However, after awhile I forgot that was how she referred to him. It was really disturbing to hear her continue to ask to get to go to God until I remembered that she actually just meant she wanted to go to church and see Pastor Proctor!

In other Christmas miracle-ish events, our family received some extra special love this Christmas from one of my customers at work. Diamond B is an HVAC contractor and one of my favorite customers. I haven't been able to see them as often as I used to since Hannah's diagnosis. They are located in Bellingham which is three hours from me. They are a wonderful group of people. John, in the shop, always has great stories of the adventures he and his family have.

I got a call to come get a package from my office, which is normal. I get sent samples all the time. This time, is was a giant box from Diamond B to my family. Everyone was excited to see what was inside. No one was prepared for what it was. Around thirteen separate, wrapped presents! Toys and books, gift cards for the boys, a zoo gift card for the family, and a card signed by everyone from Diamond B!

Hannah was in heaven. Talk about feeling the love. Thank you so much. Now I'm getting all whelly, so I am going to end with a picture of Hannah and her new dolphin pillow pet. She hearts that thing. Oh so much. ;-)

PEG Shot Reaction

2010-12-28T05:13:00.000-08:00

This is a picture of Hannah waking up from anaesthesia last week. She had chemo in her spinal column or as they call it, back poke, as well as the PEG shot in her legs. She no longer wakes up angry from this procedure, but she rarely wakes this happy. She had the sweetest smile, I had to take a picture. The first thing she said was "Can I have pizza?".

It was a long day. It was three in the afternoon when she woke from the back poke, so she had gone all day without eating. However, she still had to wait a little longer as we are required to stay under observation for an hour after receiving the PEG, to watch for an allergic reaction.

The PEG, or Pegaspargase, is a fantastic anti-cancer drug. It basically works by starving cells of the all important chemical called asparagine. All cells need this chemical to stay alive. Normal cells can make it. Cancer cells cannot. So this enzyme, asparaginase,(PEG) breaks down the chemical, asparagine in the body. The good cells will continue, cancer cells will die. Super awesome.

Until you get to the side effects. Nothing is so comforting as reading up on what could potentially occur! For this particular drug, having a serious allergic reaction is common and the chances of having a reaction increase with every dose given. Hannah was right around a 40% chance when she had her last PEG. If an allergy develops, no more PEG shots can be given. So, I am excited for every successful dose she gets.

This time, Hannah had a reaction. Maybe. She started getting little bumps on her head. I didn't think much of it at first, and we went home. By Sunday evening they were noticeable. A typical allergic reaction in the form of a rash would have been hives. Her doctor confirmed that these small, pimple like bumps were definitely not that. We are still going back and forth as to whether or not this was an actual PEG reaction. It is a very tough call. Not getting this drug would be a set back for sure, but using it again after a sensitivity has developed would most certainly cause her to go into anaphylactic shock.

We have a month to decide how to proceed before her next PEG shot is ordered. Dr. Blythe Thompson, who is the oncologist super hero, is going to assist in making this decision. As it was said to me yesterday, "She is THE Leukemia expert". Thank God. This dilemma feels too big for me, alone.

Take that, Cancer!

2010-12-16T18:59:00.000-08:00

Last week I was sure Hannah would make counts. She didn't. This week I was pretty sure she would make it. I worried, anyway. After all, I was just wrong. Three weeks of no chemo is too much.

Waiting for the ANC number to come back at her appointment this afternoon was miserable. Infact, I have been miserable to be around for this entire week, I would imagine. Waiting is, So. Really. Hard.

The doctor came in the first time, and said the numbers weren't back yet. Then, she examined Hannah and asked me a ton of questions. I couldn't think! I couldn't give answers! I needed to have the numbers! Finally, she left (she is very nice and I like her, I was just moody) and Hannah watched a cartoon while we waited for those annoyingly pesky numbers. If Hannah's ANC was above 750, she could start chemo today. She would begin the Interim Maintenance 2, phase. Anything lower than 750 was going to be a problem.

Ten minutes later the doctor came back, opened the door, looked at me, smiled, and nodded. Here is what I did inside my head.
"YYYYYYYYYYYYYEEEEEEEEEEESSSSSSSSSSSS!!!!!!!!!!"

Her ANC was at 1566!! Yeah baby! We headed right over to the infusion room for chemo. Hannah is back to fighting cancer and I am, hopefully, going to sleep tonight!

Here is a picture of Hannah as Miss. Speedracer. She was at her dad's on Wednesday and the two of them did some racing. Hannah, in this cool seat, while pretending to drive along with a pink and purple race car game. Her dad says she is the future of motorsports. She had a total blast. Hannah adores this sort of thing. I have to admit, Alex might be right about the motorsports. I am going to go gray early, I can tell.

Beads of Courage

2010-12-11T08:14:00.000-08:00

This is a program that Seattle Children's Hospital has started participating in. It is designed to honor the journey patients take while receiving care for cancer. Each kid gets a necklace with their name in block letters to start. Specific colored or shaped beads are given every time they experience something else on the bead guide.

There is literally a bead for everything; port access, going bald, feeding tube placement, MRI, bone marrow aspirations, blood transfusions, and so many more. Hannah is going to need a necklace extension as soon as her first set of beads come in!

The nurse who set Hannah's up, told us how excited the children get to receive beads. She said most of the kids like to hang their necklaces from their IV poles when they are inpatients. It is sort of a way to brag about all they have been through. The nurse proudly told me how one boy's necklace was six pounds!

I am so instantly in love with this idea. What an amazing way to turn something that might otherwise be daunting emotionally into a tangible object of pride. The website for this is www.beadsofcourage.org and the CBS Morning Show is apparently going have a piece about it on Sunday the 12th. I don't have cable, so won't be watching, but if anyone does, could you maybe give me an update?

Waiting room cuteness!

We found out Thursday that Hannah's chemo is still on hold. Her ANC last Friday was 640. She was so close to the 750 number that I thought, this week, for sure, she would start chemo. Unfortunately, her ANC dipped down to 458. Her doctor thinks something is going on with her white blood count.

Her monocytes counts (type of white blood) were abnormally high. That might mean she has an infection of some sort brewing that hasn't presented in other forms yet. It could also mean she just fought off one. Other possibilities exist but we really won't know anything till this Thursday. I am just going to hope for the best and pray.

I try not to get too upset about the ups and downs of treatment, although every now and then, the feeling that you are playing with fire, slaps you in the face. Hannah is only four months away from her one year mark. There have been many worrisome things that she has made it through. It does help develop your confidence when faced with a new one.

At any rate, making counts next week would really rock. Please, if you get a chance, say a quick prayer for Hannah. Three weeks is the most they will let her go without chemo before they admit her to the hospital.

She was sure not minding hospital food this week, though. This was her lunch!!

Temperamental

2010-12-05T16:35:00.000-08:00

There is something about having a really low ANC, overall immunity blood count, that makes Hannah a little on the ragey side. She just doesn't seem to be able to handle much.

I know this, because, she said pretty close to exactly that, on Tuesday. She wanted to watch a movie. When I asked which one, she lost it. Her hands covering her ears, screaming that she just can't handle that right now. As obstinate as that sounds, she actually looked panicked. I went ahead and picked out the movie for her.

This week has been a tricky egg shell walk for everyone in our household. We almost lost the nanny. She was feeling like her presence was an added irritant to Hannah and that she wasn't helping her. After being assured she wasn't an irritant, would be impossible to replace, and that helping Hannah's mommy stay employed WAS helping, she seemed to feel better.

It is a fine line to walk, for me as well. Which behaviors do I take on, and what ones do I just hold her though? Hannah snaps at the slightest thing, has patience for nothing, but wants to have us all around. The frustration level is high. I keep trying to remind everyone, myself included, to keep the bigger picture in mind. A walk in her shoes would surely grant us the insight to understand her moods.

Me and The Grump, after she just yelled for no one to look at her OR talk to her. Of course, the picture was taken anyway. Sibling fights.

As for her chemo treatment, it is still on hold while we wait for her blood counts to hit that magic 750 number. At Friday's appointment, we found out that her ANC was close, at 640. There is already a difference in attitude. I think she will be at 750 by this Friday.

Last Day of DI, Part 1

2010-11-27T08:35:00.000-08:00

Yesterday, was Hannah's last day of the first DI. Her treatment is broken into phases. This last one, Delayed Intensification, or DI, is designed to deliver a "knock-out punch" to the remaining leukemia cells. It is brutal and because of her high risk status, she will get an extra loop of this more intense phase again in two months. It is a very important stage of treatment and we are so glad to have at least one of them behind us.

Yesterday was also unique in that for the first time, Hannah's ANC came back at zero. Which means she officially has no available immune response. Her lowest had been 21, which is unsettling in itself. Even I'm a little spooked at the zero number.

I just keep reminding myself that those numbers will come back up. The best thing I can do is to make her a germ free bubble to live in until then. She will start the next phase of treatment, Interim Maintenance #2, or IM #2, when her counts are above 750. So, she has quite a ways to go! I am putting my bets on two weeks, but they will check her next Friday, just in case.

IM is an easier phase of treatment and Hannah did pretty well on it last time. We are really looking forward to the small break. :-)

I will leave you with a picture of Hannah in an adorable hat sent to her from our friend Heidi. She is with Smacna, the most awesome group of people you could ever hope to meet. Thank you, Heidi!!

Hannah Update

2010-11-23T20:36:00.000-08:00

The headaches have gone and Hannah is doing much better. She had a very normal day. No throwing up, no pain, no pain medication, and no fevers.

Her improvement couldn't have come at a better time, too. It snowed here in Western Washington. As anyone from Seattle can tell you, when it snows here, you stay away from the roads. We don't get large amounts of dry snow. We get an inch or so and roads that are solid ice. Getting to the hospital in these conditions would be very dangerous.

Today the roads were so bad that I couldn't get to work and the boys school was closed. So, we all got to stay home and play. Hannah had a fantastic time, other than being bummed everytime they went outside to play. She took not being able to join them fairly well, considering.

I wanted to thank every one for your support last week. It really does mean so much to us.

I left my camera in the car and forgot to take pictures of everyone in the snow. I will have to update this later with snow pictures!

Snow pic update; Aaron and Hannah on Thanksgiving. Third day of the snow, so, not much left. Yet, still suprising for our area!

Pain Management

2010-11-20T14:50:00.000-08:00

It looks as if the headaches are going to be around for a little while. The best we can do for her is to give her good drugs to keep her comfortable.

I went in to the hospital yesterday armed with information. I was determined to get to the bottom of a mix of symptoms that didn't fit the possible diagnosis I was being given. Fortunately, for me Dr. Blythe Thompson is who we saw yesterday. She is blunt, to the point, and well known for her intellect.

I didn't have to do much explaining before she confirmed what I was thinking. The headache and other flu like symptoms are not from the spinal tap or the low red blood count. They are caused from the chemo drug she was given earlier in the week called Ara-C. It can cause a cerebral headache and the other symptoms. Unfortunately, it just takes time for it to go away.

Hannah has a good block time from around mid morning to middle of the afternoon where her headache subsides a bit. After that it is intolerable. She sobs, throws up, and begs for more medicine than is allowed to be given. To combat this, Dr. Thompson has instructed that a second medicine be given a half and hour after her narcotic. All by itself this drug doesn't do a whole lot, but the way it interacts with narcotics helps them to work better. So far, it is working.

Giving your child round the clock pain medication feels counterintuitive. Most of the time I am driven to find answers. This "solution" of drugging her through it, is hard to take. However, infinitely better than watching her struggle with pain.

This week has been extremely hard. We have had so many "Are you kidding?" moments. By far, the one that is the most astounding was the ER nurse failed attempt to access Hannah's port on Wednesday night.

In order to draw blood or administer medicine they stick a 20 gauge, 3 quarter inch IV needle in the port that is under the skin of her chest. Typically, a numbing cream is applied an hour before this occurs. In the rush of the ER, a different, fast acting cream was used and applied incorrectly.

The nurse, who doesn't normally work with the cancer patients, stuck the needle in slowly. Hannah's whole body went tense and she was screaming. Clearly, she wasn't numb. I'm telling the nurse to stop. Seriously, this needle is no joke. She was basically slowly stabbing Hannah. She stops and just stares at us. I ask to her remove the needle and then I start interrogating the other nurse as to how/what numbing cream was used. It was not my most eloquent hour.

They got out of there as fast as possible leaving us to reapply the cream and clean up the blood that was now flowing out of the hole she left. I can't believe that Hannah made it through the second attempt.

I still feel agitated by the whole experience. I tried writing this with a nicer tone, but I just don't have it in me right now. When perspective does befall me, I will feel that I should have been more uplifting or kind or something. For now, I am going to add pictures of the good moments we did have during Hannah's hospital stay.

Mackenzie and her adorable baby, Cadence, came by to visit on Thursday. Mac brought me coffee because she loves me ;-) and spent lots of time coloring with Hannah. Hannah normally wants to pretend Cadence is her baby. This day however, she just wanted Mackenzie to herself. Hannah kept asking me if I could take the baby! Ha! It was really kinda funny.

Turn for the Worse

2010-11-19T09:09:00.001-08:00

We are headed back to Children's here soon, but I wanted to let everyone what is going on. I'm sorry if it isn't very detailed. I will add a better update soon.

Wednesday night Hannah was readmitted to the hospital. She has a strange, constant headache that is not presenting in the way you would expect considering the procedures she has recently had. She had a spinal tap on Monday. We also found out in the ER Wednesday night, that Hannah had a sudden drop in red blood cells and needed a transfusion immediately. Those are the two things the doctors are concentrating on as a reason for the headaches.

I think they are wrong. There are a few other oddities in symptoms that make me feel the headache is a symptom of a separate issue. However, I was unable to research this while in the hospital. Sometimes, it is hard to get doctors off a scent. I have been up to eyeballs in medical lingo, so I haven't had time for a proper update.

I am off now to go argue with doctors. Please pray for Hannah. She is struggling through the best she can. I am so proud of her.

Oh, Brother!

2010-11-16T07:04:00.000-08:00

Our clan had a hospital filled weekend. Hannah has chemo Saturday through Tuesday, so the boys came with us this weekend. For the better part of two days, we all sat in a tiny room, played Sorry, watched Hannah Montana, and ate snacks. When we left on Sunday, Andrew, my oldest, said "The hospital is kinda fun!". You should have seen the dirty look Hannah gave him!

First arriving on Saturday. Hannah was not so happy.

Sunday afternoon, after we left the hospital, we went to visit Tammy and Aiden. Hannah had so much fun playing! Of course, I got some pictures.

Waiting for Chemo While Starving = Cute Pics

2010-11-09T18:04:00.000-08:00

On Monday, Hannah had chemo (IT-MTX) in her spinal column, also, called a spinal tap or even less technical, a back poke. This requires anesthesia. She is not allowed to have anything to eat or drink for hours before being put under. The wait for that appointment is torture even when they are running on schedule.

Unfortunately, for us, that was not the case. They were running WAY behind. The procedure did not begin until 1pm. She had not eaten or had anything to drink since 6:00 pm the night before.

On back poke days, we have a deal. I don't eat till she can. It makes it more like, we are in it together. It also lets me know, how much more of a tough chick, this, Hannah Grage, is than me. By noon, my stomach was growling! Hannah? She wasn't even complaining.

I wish I could express the different ways cancer has affected our lives. Most of the time, I could tell you of all that it has robbed us of. Today, I want to tell you, that through this lens, I am appreciating my daughter in ways I never knew possible.

Here are some pictures of us, being silly, passing the time, before they called her name.

Birthdays, Hats, and Making Counts

2010-11-07T16:27:00.000-08:00

Oh, I have so much to tell and so many pictures, I can barely begin.

Ok, First.
Yesterday was Kristian's 4th birthday. So, Happy Birthday, Kristian!
His mom, Auntie Janea, Grandma Patty, and the birthday boy, himself, came over Tuesday night to have dinner and play. Here is a picture of Kristian and Hannah tearing into presents.

Second.
Check out this hat.

My co-worker, Barb, gave Hannah these awesome animal hats with fleece on the inside. This one is a mouse. Hannah LOVES it and wears it everywhere. Also, don't be alarmed by the ink on Hannah's face. While I did let Hannah get all tatted up, I did insist she go with fake tattoos.

Third.
She made counts at Friday's appointment. Her ANC was at 2160. That is a very healthy number! She only needed to be at 750 to start the next round of chemo. She started her, four day in a row, chemo schedule yesterday.

Fourth.
Chemo is really the worst, best thing.

Here she is at the start of yesterday's six hour chemo transfusion. Happy and coloring. Half an hour after the chemo started she got a wicked burning headache in her forehead and nose. They slowed down the drip and she eventually felt better, but it was some cold, hard reality served first thing.

Best, of course, so we can keep seeing this smile.

Fifth.
I will leave you with this amazing picture of a wild, rocker girl I know.

Bald is Beautiful

2010-11-05T07:32:00.000-07:00

So, the hair is gone. I have never seen a cuter bald little girl, ever. I am, of course, extremely biased.

Her hair got to the point of a mere suggestion and she asked her dad to cut it all off.

I think Aaron has taken it the hardest. The day it was shaved, Aaron walked by her and stopped dead in his tracks. She was asleep. He grabbed his stomach and hunched down a bit. When he turned around he had tears streaming down his face.

Aaron is a kid with a very big heart. He and Hannah spend most of their time together getting on each other's nerves. Wednesday night, however, was all kindness.

Chemo On Hold

2010-11-02T06:54:00.000-07:00

On Friday, we found out that Hannah's blood counts, specially, her ANC, were not high enough to receive the next round of chemo. They will recheck her blood counts this Friday and continue with chemo should the numbers look good.

Meanwhile, instead of spending the entire weekend in the hospital, we got to go home. We ran around trying to cram as much fun as we could in those couple of days! I am still a bit behind.

I have fun pictures that I will post, but for now, I'm off to work! Sorry about the short update. Promise to elaborate this evening.

Update: Ok, adding pictures is not technically an update, but it has got to count for something. Right? :-)

My favorite girls, Maddie, Tay, and Hannah, goofing off!

It's almost gone

2010-10-27T06:06:00.001-07:00

Hannah's hair has, maybe, a couple days left. Yesterday, the hair she did have had matted into such a tangled mess overnight, that, cutting it was the only humane thing to do. It would have been painful to brush for someone without a sensitive head! Besides, huge handfuls have been coming out by the moment, so cutting it short seemed like a two problem solution. This is, of course, a mix of emotions for everyone. However, it is such affirmation that the chemo is really working. Time to pull out the hats! :-)

Grandma Patty took the big kids out to the bouncy place last night and Rian and I had a "date" with Hannah. She was finally feeling like eating again after battling painful mouth sores from the chemo. It was slightly surprising to hear her request Chinese food for dinner though! So, we ate take out Chinese and watched one of her favorite movies, Cowbells. I can't say I recommend it as I lost all objectivity after the 100th viewing.

D.I. is Rough

2010-10-23T07:15:00.000-07:00

This has been a very difficult week for us. The chemo cocktail she is on has really worn her out. My very active little girl is now napping twice a day, slurs her words, and wants to sit with a warm blanket most of the day. Her doctors say we just push through. I know they are right. It is hard to watch.

Next week, if her ANC is above 750 she will start the second half a DI. She is almost always delayed two weeks when she starts a new chemo. If she does make it on Friday, then Saturday will start the four in a row Ara C and Cyclophosphamide appointments, followed by a back poke. These particular chemo drugs are given through IV over 4-6 hours each day. Again, long time to be stuck in a chair, but we do have the new princess DVD player! It's the small things, right?

Last weekend was a two day party. Saturday, was Aiden's third birthday and subsequent party. Sunday, was Hannah's big five year old birthday party. Over those two days, I got some of the cutest pictures. I'm sure I will fit them all in at some point. Today, I am just going to share my favorite picture from the weekend.

Grandpa Jim (or Norm), the greatest bday present ever, and Andrew.

Waiting just got easier

2010-10-16T08:00:00.000-07:00

First, I wanted say that we got some good news at her appointment, yesterday. Hannah's counts are indeed on their way down. The chemo is doing it's thing to kick the cancer out.

Infact, she will need to go in a couple times this upcoming week for transfusions. Now, those are LONG hospital days.

Hannah and I however, just got something that is going to make that a bit easier. For her birthday, I got her a portable DVD player. Disney princess pink, of course.

Yesterday, was her first trial of this new entertainment at the hospital. I couldn't believe how much easier this made the day.

I'm sure many of you know how difficult it is to keep a young child busy during a boring outing. Well, most of our time while not getting chemo is spent in the waiting room, waiting (odd, right?) for different phases of the appointment to take place. It is an exhausting struggle to make that "fun".

Here is pretty much how yesterday went.

Discovering it works in the car.

In the waiting room.

Waiting again

Blood pressure and temp? No prob, just work around the screen.

Waiting for the Doc, still not a problem

Transfusion Room for chemo, "What else you want to do?"

I'm sure the novelty of her new device will wear off, but for now, I hope it helps her get through the next few appointments.

High Counts

2010-10-15T06:18:00.000-07:00

Today, we are headed to Children's for more chemo. This week I am very interested to see where her blood counts come in at. Last Friday's numbers were odd.

The chemo drug, Dox, she is on right now, is known as the tumor stopper. This is because it works by stopping DNA replication. Hannah's counts, then, should the Dox be doing it's job, should be in the toilet. Last week, Hannah's ANC went from 1300 to 3549. Her Dr. said her bone marrow seems to have revved up in response to the drug. Sigh. Have I mentioned how stubborn Hannah is?

From all the signs I have seen in Hannah this week, I believe, her numbers are on the way down. Plus, I have been sweeping big clumps of hair up from the floor. As strange as it seems to be happy about, it is actually good. Hair is one of your most rapidly dividing cells. The chemo is doing it's thing when you see hair loss.

Hannah, otherwise, had a fairly good week. Some good days, some bad. Mackenzie and Cadence came over Monday to stay with Hannah while I attended Rosie's funeral. Hannah loves playing with Cadence, and has talked non-stop about her since.

Wednesday, was my birthday, but Hannah said it couldn't be unless I had a cake with candles. So, while ordering dinner (don't judge me, it was a long day!), I also made sure to order their only cake, cheesecake. The awesome pizza delivery girl brought candles!

I also got a couple of pictures of Hannah while she sang and played her brother's guitar. She made up some song about bananas that had me rolling with laughter. Which, after Monday, we all needed a bit of that.

Hannah singing the Banana song

"How was that?"

It's Your Day, Baby Girl

2010-10-09T18:20:00.000-07:00

Flashback to five years ago.

Cutting through the silence of a room loud with electronic noises, the doctor says "And, here is your daughter".

With those words my life changed forever.

That life in which I had resigned myself to never knowing how it felt to have a daughter, to always feel the twinge of pain as I passed the little girl section, to skip over the barbie isle on my way to Legos, to never being the mother of the bride, or having that mother/daughter bond, was gone in five little words.

Replaced by you.

You, my dear, are everything I envisioned in a daughter and so much more.

Let me share a little about my Hannah Banana.

The barbies? Oh yeah. Check, check.

She is the girlyist, girl ever to grace a pink purse and plastic shoes.

She is also, full of courage. She has the bravery of a soldier headed to battle.

She has fire and spunk. Out of all the boys in this house, she is the adrenaline junky. The girl has the need for speed!

She has the innate knowledge that she is worth it. This girl will not take crap from anyone.

Even though, she is my perfect princess, she is no damsel in distress. She exudes strength, she has power coming out of her pores.

She is smart and beautiful and even in the face of cancer, she is full of life.

Happy Birthday, Hannah. I love you, baby girl.

Hannah, rocking the outfit Uncle Bret, Aunt Amanda, Claire, Marcus, Ava, and Brady got for her bday.

How about bacon, Mama?

2010-10-07T06:24:00.000-07:00

This is what my darling child said to me at 4 AM this morning. Let me tell you, if she wasn't so stinking cute, I would not have been up this cold, dark morning to watch a horrid show called Backyardigans and fry bacon. But, she is, and I was.

I was also up several others times through the night putting a small blanket with cows pictures on it, in the dryer for a minute and then wrapping her toes, or arms. That process is what we have unearthed as a way to stop "scratchy legs" or "sprinkle toes".

Those side effects from this round of chemo seem to effect her the most, along with nausea, and appetite loss. She is also on steroids for one week to help boost her body through the chemo. The last time she was on them, we couldn't feed her enough. I had never seen anyone eat that much. This time, it is only keeping her appetite from being nonexistent. That is better than nothing! So, 4am bacon it is!

Sunday was Rian's birthday. We all had a great time playing over at his house. His oldest daughter, Maddie, came up with with a new way to bob for apples. She hung them from strings! It was amazingly hard, and yet SO much fun to watch.

I also have some cute pictures from the zoo last week. Hannah had a great time there. She met a little boy there and they were racing around together for a few minutes. Just as I was thinking, ah the zoo, how normal, Hannah, went up to his mom and said "My name is Hannah, and I have cancer." It sounds sadder than it was. She said it with a big smile, but the poor mom looked HORRIFIED! Kids, they say the darnest things, right?

It is possible, that if your not going through this, that would not have been funny. I however, in this now awkward moment, was struggling not to laugh, (I might have been killed by the other moms), and wishing Mackenzie was there. We could have laughed together with Hannah and escaped the awkward. Oh well. Here are the pics anyway. Hope you are all have a great day!

Hannah loves the sharks!

Devil or Angel?

2010-10-05T06:41:00.000-07:00

Hannah started the phase, Delayed Intensification, or DI on Friday. She got a new chemo medicine, Doxorubicin, or Dox. It is a bright red liquid and has the nickname "The Red Devil". It is powerful, and can cause heart damage. A person can only have so much in a lifetime due to this. It also makes you feel really awful. However, as far cancer killing goes, this is THE drug of choice. If this is what is needed to get the cancer out, then the Red Devil is angelic to me.

I have lots of pictures and more to post from this weekend, but, I'm running late for work! I promise to post later this evening. Sorry!

Nana Fran came for first day of DI. Hannah got ballons and a purse!

NG Tube Mishap Turned Positive

2010-09-30T09:43:00.000-07:00

On Sunday, Hannah had a feeding tube incident at her Dad's house, that ended in something pretty nice for Hannah. It seems in her haste to give their dog a treat, she yelled the command too soon. Torque, the dog, quickly turned to get to the spot treats would be coming from and pulled out Hannah's feeding tube.

When I arrived to the ER the tube was almost completely out. I was pretty sure after a few uncomfortable moments, it could be pushed back in. The important thing was that it went to the right place in her body and not, say, her lungs. Unfortunately, getting the tube back in was not going to be easy.

As Hannah was telling the nurse about her doggy, she, unknowingly, caught the tube between her fingers and it ripped all the way out. That was not good. Aside from it being painful, it really destroyed her brave, big girl stance towards the whole thing. Trying to get the tube back in was a nightmare. At one point she was sobbing so hard, that I started welling up.

The doctor came in a suggested giving her an amnesia drug to make her forget the experience. Whaaattt? I didn't know anything about this drug. Questions were swirling my brain. It seemed too rushed. I wanted to slow this train down. Out in the hallway, I begged the nurse to just let us leave and try again with our regular doctor. After getting an ok from the on call, oncologist, they let us leave without the tube.

What I was really hoping for was a chance to present to our regular doctor a case for leaving the feeding tube out. In the last week and half, Hannah has gained so much weight. She has been eating by mouth more than she had in awhile plus getting all the calories she needs by tube. She was well over her original weight. I know they were wanting to keep the tube in for the next phase of treatment that starts Friday. It is going to be the hardest chemo she has had yet. I can understand that. However, since the tube was already out and her weight was already up, why not leave it out until she needs it again? I want to minimize the hardships she has to endure for the next three years.

To our great surprise, her doctor totally agreed with me! It was such a bright spot in what has been a very horrible week. When she got in the car, she shouted "I'm free!"

Today, is our last day before the Delayed Intensification or DI starts. Thanks to the team @ Smacna for their amazing gift to our family, Hannah and I are going to the Point Defiance Zoo this afternoon.

Here is picture from last week of Aiden giving Hannah a helping hand with the IV pole.

Happy Birthday, Todd!

2010-09-30T09:08:00.000-07:00

Today is my brother's 35th birthday. Aside from the fact that Todd is much taller than me, I have always looked up to him. He is one of those guys that make you think, this is what men are supposed to be like. He is kind, funny, strong, loyal, honest, and brave.

He is also in Iraq on his 4th tour. It is a very long time to be away from your family, especially, with a family as cool as his. He has two boys Adam and Lance and one daughter, Amber. His wife, Kim, is amazingly strong. Plus, Todd and Kim are one of those few couples that actually like hanging out together.

My kids talk about Uncle Todd all the time. When Hannah first got cancer Todd sent her a message saying how brave she was. She was beaming ear to ear to hear her brothers, who were clearly impressed, exclaim that "Uncle Todd, thinks YOUR brave!"

I think we will all breathe easier when he comes home. For now, Todd, I hope you have a great birthday. Love you!

We will miss you, Rosie

2010-09-27T10:02:00.000-07:00

This is baby Rosie. She would have been two years old in November. She was a beautiful, happy girl. She was so full of smiles. Hannah always said that was her baby. Infact, she always said she had two babies; baby Aiden(who is now almost three) and baby Rosie.

Rosie was struck and killed by a car on Saturday evening in Kent. Rosie's godmother, Rosie Ma'alano, was also stuck by a car while trying to save baby Rosie. She remains at Harbor View right now in critical condition. My heart is breaking a million times over. It can't even compare to what her mommy, Janea, (Rian's sister) is feeling. Janea has got to be one of funniest people I have ever met; this is just so unfair. Please, say a pray for her, Thomas, their son, Kristian, (who is also an amazing little guy) and Rosie Ma'alano. I believe a donation site has been set up through their church. I'm going to post that when I get it.

Update: The donation site is
Seattle's Union Gospel Mission
P.O. Box 202
Seattle, WA 98111
attn baby Rosie Taylor or Rosie Ma'alano

Week Recap

2010-09-24T08:04:00.000-07:00

We have officially completed one week on feeding tube time. It is clearly working in putting weight on her. She looks fleshy, has a little more color, and even a little tummy! It definitely adds a whole new element to our lives. Hannah has quickly adjusted. She almost never complains. She only had one day, one morning, actually, where she even mentioned not wanting to do the tube flush and placement check.

She calls the feeding tube her drink and she seems very proud to talk about how much "drink" she is getting. Considering the fact that she has to drag an IV pole just to go to the bathroom, I'd say it is pretty remarkable how she well she has adapted.

They did give us a backpack to use instead of the IV pole for things like going outside or car rides. So far, it has been problematic. It is too heavy for her to wear and makes beeping noises at random. We are still figuring all of this out.

Next week she will go in for a weight check. At that time they will determine if she can go off the 24/7 feed and just go to night feeding.

I'm sure I am missing some great stories from the week but, since they are not coming to mind right now, I might add some posts later! I hope everyone has a great weekend!

Food? Through a Tube

2010-09-17T19:24:00.001-07:00

Yesterday was the day. After waging a hard fought battle against chemo induced weight loss, Hannah and I admitted defeat. She was .1 kilograms under her weight cut off. She ate so well this week too. However, after a little over a month of being under or just at weight, it was pretty obvious that our best efforts were not going to be enough. It was a simple decision to say, yes, she needs the feeding tube.

At first it was very scary for Hannah. They had a child life specialist named, Jill, who came to help Hannah accept this new situation. She did a great job. Jill started with a cool bubble trick (she blew a big bubble, grabbed the big bubble with wand, and blew smaller bubbles into it) then moved to the guts of the visit. In the past the child life specialists were never much help and actually seemed to make it worse. They would just baby talk Hannah, and try to distract her. This lady was good. She didn't try to cover up what was about to happen. Instead, Jill gave Hannah a doll with a feeding tube to show her what was about to go down. My girl does best with lots of information. Wonder where that comes from? :-)

When it came time for the placement they asked Hannah is she was ok to start. She said a quiet, yeah, lets do it, and sat very still. I don't think you can prepare for what that feels like. Luckily, she complied in drinking apple juice to help the tube go down, but screaming and gagging the whole way. The tube managed to curl around itself instead of making it down to her stomach. They had to pull it out and start again. uugghhh.

After the tube was in the right way, the new focus was getting Hannah to breathe. It is such a weird sensation to have a tube in your nose and down the back of your throat. It was very hard for her to concentrate on breathing and not throwing up. She asked everyone to please take it out. Her face was tired and strained, eyes red, just begging us to help. It was heart breaking to say the least. I don't know how either of us made it. It is one of those, you do what you have to, moments.

If she sat still, she could ignore that gagging feeling from the tube in the back of her throat, but if she moved, it moved and she was throwing up again. (the way home was ridiculous) We had a two and a half hour class right after the tube placement on how to take care of Hannah and operate the feeding tube. I don't remember a whole lot from that. I was busy telling Hannah to be calm and focus on breathing. It was helping. Thankfully, for me, they sent written instructions and a video.

She continued to gag and throw up the whole night, but this morning she is doing wonderfully. She became accustomed to the tube feeling and no longer gags, plus she is tolerating the feedings. For some kids the dripping liquids feels so weird in their stomachs that they throw up from that. It is a whole fun process. It feels very complicated right now, but I bet soon we will be used to this as well.

Yesterday's hospital visit was a little over 5 hours. I got a couple pictures in when things were a bit calmer. This picture started off as happy, but mid snap it changed.

Watching cartoons was a big help.

Doing lots better with crackers and juice.

Weight Check Friday, Again

2010-09-17T06:43:00.000-07:00

After Monday, Hannah had a very uneventful week. She has had her usual chemo related issues, pain in legs, tingling hands and feet, nausea. However, she has been in a good mood and her usual fun self. Her brother Aaron, this week, crashed on his bike into a metal light post, cheek first. He survived. We all had a very funny time coming up with, how'd you get that bruise, stories that he could tell at school. Rain's tale of a kitten and a cupcake was EPIC. I will save it for another time.

We are headed in today to check her weight. Since this has been a very well discussed topic, instead of sharing our worries of the feeding tube, I am going to share some random funny pictures from this summer. It is probably more of a distraction for me, but I hope it works for you too. ;-)

Mackenzie, Brian(not pictured) and their baby, Cadence, came over for dinner. I had just moved in, so no pictures on the walls yet.

Cadence loves her toes!

Kids in backyard on wood swing/slide play structure.

Something we call Mean Mugging!

My co-worker Duane, and I mean mugging at this year's Smacna Crab Feed. The temptation to smile is overwhelming.

Happy Friday, everybody!

Hostage Negotiator

2010-09-13T21:36:00.000-07:00

Hannah had chemo today. It is actually the last treatment of the IM phase. In this, IM phase, we don't go in for chemo as often. Straight out the gate that makes the appointments a little harder because she is not as used to them.

I often joke that, with Hannah on chemo drugs, my job now, has become, Hostage Negotiator. Talking her down from the ledge of tantrum is sometimes just part of the tasks. Luckily, she becomes very reasonable fast. She also jumps from calm to screaming angry, fast. Thanks to many books on Leukemia, I was at least not unaware this would be the scenario. I have to say, I was unprepared for today.

She had quite the fit just to leave for the hospital. Once we were there it went alright, although, I did have to use some of my Negotiator skills to get through the port accessing and the drawing of blood. Hey, who likes being stuck with big needles?

The trouble really started with the crazy wait once we were in our room. It took a little over 2-1/2 hours for her labs to come back. Finally, our Dr. came in to say, that they were not back yet, but we could go to lunch downstairs while we waited if we wanted. In front of Hannah. Thank you for that.

Of course, Hannah loved the idea and was getting shoes ready! The Dr. walked out and in the time it took to get one of Hannah's shoes on, came back in with the labs we had been waiting on. In order for Hannah to get her chemo today we needed her labs showing us her blood counts were high enough to support it. Turns out, there were, and instead of lunch we would be heading over to the infusion room for chemo.

That is when it began.

She was saying loudly that she did not want medicine. I was using the first stage of skill by letting her know it was just through the tubies and not her mouth. She started screaming. I set her down in the big green chair in her new room. She got right up and ran. She actually faked left first. She made it half way down the hall. You should have seen the look on the nurses faces. I caught her brought her back and started what I had thought was a pretty impressive Negotiation. Then, the nurse came in with oral meds. It was the Zofran for nausea, so not actual chemo, but killing my credibility all the same.

Hannah was literally screaming at the top of her lungs. She was kicking, hitting, twisting, anything to get out of there. We had to hold her down for the meds. She spit at us. She screamed she hated me, she screamed the nurses were brats, (which I initially thought might have been another word, but after hearing it again, it was brat). She wanted out of there at any cost. In that moment, talking her down from crazy was not possible.

After it was over, we made a beeline for the door. By the time we were in the car she was full of the sorry mommy stuff that helps me know she is ok. For me, today was such a FAIL. I have been over and over it for next time. I should have made a plan with her before we went to infusion room about the lunch. It is just those little details that helps her and I missed it.

Tomorrow is another day and we will try again.

We Compromised

2010-09-13T07:36:00.000-07:00

Hannah made weight on Friday. Not by much, though. She has been at or below weight now for almost a month, so, her nutritionist, Mary, wanted to discuss what we can do.

I was surprised she even made weight. The only thing she consistently ate were pickles. However, I never stopped making her food. It really felt like I was always making her something that she either completely rejected or only took a couple bites. Somewhere in the tasting of those distasteful dishes, she kept up her weight.

Still, sporadic eating is not a real solid long term plan. She really needs protein so that she can keep those muscles around. The feeding tube would deliver that for her in a liquid form and avoid that whole yucky food thing. Liquids, however, were something that Hannah was a champ at ingesting. She drinks at least ten to twelve cups a day of apple juice or milk.

So, what Mary suggested was that we take the protein powder that makes the feeding tube formula and mix it in either apple juice or milk. Hannah would have to be able to take this "formula" by mouth instead of routing it through a tube down her nose.

It worked. She will not only drink it, but the powder can be mixed in other things too; soup, mashed potatoes, or other things that disguise the smell. That's the one problem, wow, does it stink. Insulated cups with lids and straws apparently, hide the smell from Hannah, and we are in business!

Hannah being silly!

Weight Check Friday

2010-09-09T18:13:00.001-07:00

I could literally start calling Fridays, Weight Check Friday. We seem to have one every week.

Last week I was on the confident side on the scale. This week...
Well, let's just say that I checked the label on the jar and there are only 5 little calories in a pickle. Five. Despite everyone's constant efforts as the best short order cooks in town, pickles, are the main thing that she has been willing to eat.

I can't even begin to explain how feeding this child has consumed our lives. The amount I am able to get in her keeps me up at night. This must be the point those other parents were talking about when they felt relief at the tube finally going in. I still don't wish that for her, but right now, I might understand where they are coming from.

Hannah, however, never gives up. Knowing what tomorrow is, she has done her best to eat more. Tonight is a PTA support night at a local pizzeria. For every pie you buy a portion will go to the PTA. Hannah says she wants to go and eat lots of pizza. Fortunately, her ANC is high enough for me to comply and God knows she needs the calories. So, with an abnormal supply of hand sanitizer/ disinfectant wipes, we are off to eat pizza and support the PTA!

Gold Ribbons, Please

2010-09-04T11:53:00.000-07:00

September is Childhood Cancer Awareness Month. The ribbon color for Childhood Cancer is gold.

The pink ribbon for breast cancer has been a huge success with raising awareness and funding. As for childhood cancer, in terms of chemo drugs, long term side effects, and research needed for kids, who despite great odds, seem unaffected by chemo (such as our little Banana), there is still a ton of work to be done.

It would be great to take the breast cancer model and have it work in bringing awareness for our cancer kiddos. So, for this month, if you got gold, or can get it, please, wear it!

Spinal Taps & Low Counts

2010-09-03T09:23:00.001-07:00

According to Hannah's protocol, in this phase of treatment, she will be receiving an escalating dose of IV methotrexate, until the point her body cannot tolerate it anymore. That point is determined by her blood counts and ANC levels.

Yesterday, her ANC had slipped just below the acceptable levels for continuing on the higher doses of IV Mtx. They skipped giving her that yesterday and the next time she does receive it, the dose will only be 80% of the amount last given.

I am happy for Hannah that she doesn't have to endure more intense doses for now, and a little concerned that she only made it through one round of the escalating chemo.

So, yesterday she only received two types of chemo, one in her spinal fluid and one through an IV. Hannah goes under for the spinal chemo. It is something I am never going to get used to, but I am glad she hasn't been waking up with screaming rages anymore.

This time it took her awhile to awake. I guess she really wanted a nap! Her little face looked so peaceful amid all the wires. It is definitely a different road we are on.

First Day of School

2010-09-03T07:29:00.000-07:00

Andrew, Maddie, Taylor, and Aaron

Yesterday, was Andrew and Aaron's first day of school at their new schools. I didn't get to be there for them as Hannah had a spinal procedure that required us to be at Children's at 8am. Instead, I took them over to Rian's house and he took all the kids in.

Apparently, the boys had a fantastic first day. They met lots of new friends and both say they love their new schools. Thank god for that! They have to wear uniforms, even though they are public schools. I love that. It really keeps back to school shopping costs low! Andrew, especially, had issue with the wearing of uniforms until after his first day. Now, he says the kids all look sharp and it helps with the, do my clothes look cool, anxiety.

Hannah doesn't start school until next year, but she did get new shoes and a cool new sparkly hat!

She Gained Weight!!

2010-08-30T15:14:00.000-07:00

On Friday, we had weight check again. Monday and Tuesday of last week she had some high levels of chemo that generally make her sick. Seeing as we only missed having a feeding tube last Monday by .1 kilograms, it was plausible that by Friday she may have lost that small lead.

However, when Hannah stepped on the scales on Friday it read 16.5 (kilograms). She had a .4 gain in 4 days!! We actually screamed and jumped around. I am pretty sure I threw my arms in the air and then screamed and then picked up Hannah to twirl her. Also, she has been eating and drinking at a descent rate since.

You would just not believe how exciting seeing a kid gain weight can be. I don't think the hospital staff was prepared for our level of glee either. hee hee. They all looked at us like we might be crazy. They are right. ;-)

Here is a picture of Hannah and a little boy named Nicolas. She has been rocking the high tops lately. I love it.

Awesome, Awesome Guy

2010-08-25T23:04:00.000-07:00

Check this out! My best friend Mac's husband, Brian, rides for the Seattle Cancer Care Alliance. He had these stickers made to put on his bike and the bikes of others. How much does that rock???

He sent me info about a woman named Tatyana, who is doing a triathlon for the Leukemia & Lymphoma Society. She is also putting the Ride for Hannah sticker on her bike because of Brian. Tatyana rides with a team called Team in Training and she put a link to Hannah's blog on her fundraising page.

I'm going to try and link her page, if this doesn't work, it's 'cause I'm not the greatest at this yet and I will call for back up. In the morning when people answer their phones.

Unbelievable

2010-08-23T19:22:00.000-07:00

Well, after all that, Hannah came into her appt. today and made weight. It was an incredible jump. Everyone was in shock. Our doctor was grinning from ear to ear, she was so happy. So, no feeding tube today. Thank you, God.

We have weight check again Friday. I really can't say what is going to happen. The type of chemo she had today and will get tomorrow are her worst for nausea. We will see. I'm trying not to be too invested either way. I hope we avoid it, but am going to prepare.

Hannah on the other hand is VERY excited. All weekend she would ask me if the food she was eating had calories. I did name her Hannah Joan Grage. Joan, after my amazing Grandma, who also fought cancer. I have decided if you name your girl Joan, your gonna get a fighter.

Cute Pic Time

2010-08-21T08:08:00.000-07:00

In an effort to cheer up, here is a picture of Hannah watering flowers. I love the frog boots. My best friend, Mackenzie, her husband, Brian, and their super adorable, could eat her up, baby, Cadence, are coming over today so Hannah is watering with a dress on!

Stupid, Stupid Cancer

2010-08-21T07:33:00.000-07:00

We went in for a weight check Friday. She has lost weight. She will get the feeding tube. Monday. I will get a class on how to take care of my baby with a feeding tube.

Yesterday, I felt cut off at the knees over this one. Hannah was really mad at first. She yelled that she would rip that tube right out. I felt so bad for her. She is settling into the idea a bit more now.

We tried everything and fought so hard to avoid this. There is no getting around the fact that she will have to deal with more uncomfortable, crappy things to fight cancer. I was really hoping to spare her this one. The tube goes down the nose into the stomach. From the nose, the tube is taped to the side of the face and attached to a backpack with a machine that dispenses liquid food. The machine vibrates and hums.

In the end, the girl needs some calories. This will be a huge benefit to her even if it is awkward at first. It will help with her nausea and give her more energy. I am told it will actually be a relief once she gets over that the tube is there. I'm sure that's true. It's a long fight, Leukemia. I tell you what, despite the pain, or tears, Hannah has the fight in her.

Week Recap

2010-08-17T06:23:00.000-07:00

I haven't updated for awhile and I do apologise. We have had a couple of big changes in our lives.

We moved. After five years in a, not bad sized, apartment we moved to a house. We needed the space and in the end it actually costs me less. The house has a rainbow play structure (wood swing/slide/fort set) in the backyard and no down stairs neighbors! That is a pretty big deal for us. Hannah's room has Barbie pink walls and the boys got a cool blue-gray color that they love. (Thank you, Steve!!) Everyone loves being in a house. Hannah jumps on the floor now and then, just 'cause she can and it is funny every time.

It took us a bit of time to get used to the idea that we could go outside. Of course, we KNEW we could, but it seemed to take awhile to have our brains route the yard as usable, accessible space. Now, the kids and I are out there often.

Hannah has been extremely good at following the rules for playing outside. There are lots of things that are off limits and that is hard. She can, however, water plants and play on the swing set. She has barbie gardening gloves and hat that she wears to over-water all my flowers. For her, it's heaven and let's be real, that is worth ruining those flowers right now.

For me, moving has been insane. The house and yard need a ton of work. That and my actual work have been very consuming and slightly stressful recently.

The main thing stressing me out was finding a nanny for Hannah. I had been searching for just the right person to stay with Hannah during the non-hospital days while I work. That is so much harder than it sounds.

Fortunately, I have had wonderful friends and family who helped me out until now, but I needed to find someone permanent. I had to find not only someone who was qualified to take care of a child currently undergoing treatment for cancer, but someone willing/able to do the job consistently, with kindness and patience. Oh, and did I mention, someone who would do this for less than a million dollars? Which, it seems, is the going rate. Just ask any nanny agency, I talked to them all. That is a small exaggeration.

Anyway, I did finally find someone. She is very kind, loves my three kids (they are pretty fun), and helps me not worry as much while I am working.

On the Hannah cancer front, she is doing OK. We don't have to go the hospital as much in this phase of treatment, so that is nice. The chemo drugs she is on have lasting effects that make her nauseous, cranky, tired, and have leg and feet pain. She isn't eating near enough and we have weight check again this Friday. So, other than that things are perfect. :-)

Backyard Camping?

2010-08-10T23:51:00.000-07:00

Here is a cute picture of Hannah from last year's camping trip. It was very early morning and she looks tired, but adorable.

For the last few years we have made going camping in August a ritual. It is our summer vacation plan. For all the obvious reasons, we will not be pulling out the gear and heading over the mountains, this time.

My experiences camping as a kid have provided me with some unrealistic expectations of how much fun could be had. Needless to say, camping as a parent, is labor intensive and fairly short on the fun I remember. So, I was a bit surprised when my three starting complaining about missing the camping trip, to be echoing the sentiment.

With every thing else going on, it is hard to hear Hannah feeling sad about the things she is missing out on. I would like her to get to concentrate on the things she can do. I think, I may just have to pull out the tent, at least just for the backyard. We could do smores and hot dogs or something. Ah! We could call it Chemo Camping! That might be pushing it.

Anyway, in other Hannah news, she is handling this phase of treatment pretty well. We had a rocky weekend with nausea. She was throwing up more than normal and I had to bring out the big guns in anti-nausea medicine. The heavy duty stuff can make her very drowsy or out of it, so it is a last resort but I am happy it is there. We go in Thursday for more chemo and nausea med refills!

Results are in...kinda

2010-08-07T10:22:00.000-07:00

The answer is long. For those who do not want to read through it, her cancer levels did not go up. In our world if it isn't bad news; it's good news!

Hannah had a spinal procedure this week. Part of it was to give her chemo in her spinal column and part of it was a bone marrow check for cancer. This BMA was collected for research only and it is going to a larger study. That study is evaluating kids like Hannah who have some residual cancer left in their bodies after induction. The current method of treating the kids who didn't respond well to the first round of chemo is to give them more aggressive chemo. The data they are collecting will determine if that plan actually helps or if the rate of relapse stays the same regardless.

The reason I explained all that, is the results I was waiting for from her BMA are not really available to me or her doctors. They are for research. As her team of doctors explained to me yesterday, unless her cancer levels changed they will not release the numbers, even to the doctors. They can't risk comprising the study.

So, her protocol stays the same. Her risk and prognosis stays the same. I have to be honest, that is not exactly what I was hoping for. I was hoping they were going to tell me her cancer levels were at zero after all that crazy chemo. On the plus side, it isn't worse! And I can live with that. ;-) Hannah has had good energy and appetite all week, which is very nice. Working every day to beat back that feeding tube.

Hope you all have a great weekend!

Whew, she made it

2010-08-02T17:34:00.000-07:00

We went to Children's to see if Hannah's body had recovered enough from the last round of chemo to continue on.

I am happy to report to you that her ANC was well over the required 750!!! Also, for those keeping track, her weight went up just enough to be above her cut off point, putting off the dreaded feeding tube again.

Apparently, two weeks after her doctors say she should be ready for more treatment, is when she will actually ready for more treatment. Every time. I'm afraid that girl is every bit as stubborn as her mother. ;-)

We have officially made it out of the Consolidation phase and on to the next, IM. It is supposed to be an easier phase and we are so excited for anything they are willing to call "easy".

It's a good day, no getting around it. I am just plain happy.

Found A Friend

2010-07-30T01:14:00.000-07:00

Prior to getting cancer, Hannah's every day was filled with friends and fun at preschool. Since April, she's basically, only been in the house or at the hospital. She has had a couple of visitors, good times, but it's not the same. She misses playing with kids so bad.

So, in the waiting room today, two boys were running around a little table playing with cars. They were loudly laughing and having fun. It is a sight almost unseen at clinic.

Hannah was mesmerized. We sat at the coloring table until she was brave enough to ask one of the boys to play. Disaster. Rejected and quick. He told her to go back to the coloring table. Super harsh. I wanted to hurt that kid for a moment. Don't judge me! She came back, sat down, and fought the tears.

I suggested we go play with the spinning, ball contraption that everyone loves. We went over there but she just couldn't quit watching them play.

Then, the mean boy left.

I asked if she wanted to try again.

The approach

Success! He wants to play!

Playing quietly at first

Now we're having fun!!

How awesome is that? Hannah didn't let that mean kid get her too down. That girl has got spunk. I love her spirit. I love the fact that my phone has a camera and I loved watching her have some fun!

Escaped Feeding Tube, for now

2010-07-30T00:40:00.000-07:00

Hannah's blood counts were not high enough to continue chemo. They did go up significantly, though. Her ANC is finally out of the danger zone. Her ANC last week was 168, then Monday it was 218, and today it was 521! So, that is some good news. She needs to be at 750 to start chemo. We will go back Monday and try again.

Now, the dreaded feeding tube. Hannah desperately does not want one. However, with as much weight as she has lost and the way her stomach feels almost constantly, it is really just a matter of time. We went in yesterday and her weight was stable but still too low. She will recheck on Monday.

I wish she could eat her way out of this, but I also see how hard it is for her. I make her everything under the sun and it just sits there. Her mouth is dry, smells make her stomach lurch, and most days the food doesn't sit in her little tummy very comfortably. I don't know what else to do.

I had asked if Hannah's protocol was possibly too rough for her. The answer was; Scientifically, nope. For a mother to have to watch, absolutely.

Amen.

Chemo Still On Hold

2010-07-26T18:58:00.001-07:00

Hannah did not make counts again today. However, her blood counts have come up a smidge. Her ANC went from 168 last week to 218 and her red blood and platelets are holding steady. Her ANC is still too low to continue on to the next leg of treatment, IM. She needs her ANC to be at 750 or above to continue getting any chemo. I wasn't surprised, as she has been tired and off color all week. I still hoped, though.

Our next appointment is Thursday and if her counts are high enough they will start chemo that day. Please pray for us that her counts rise and that she not get sick. It is really important at this stage of her treatment.

Hannah did get to start her physical therapy today. She loves it! The PT room has lots of toys, a slide, stairs, balls, balance beams, and more! I should have taken a picture but forgot. They evaluated Hannah and had her doing exercises. It went so well that she never knew it was anything more than getting to play.

What they discovered was that there is significant weakness in her left leg and that she continually favors her right. She has lost strength overall in her legs as well, so much, that they buckle on her without warning. We were given a little exercise routine to do at home that Hannah, actually thinks is a pretty good time, so we got that going for us!

I think all the PT "playing" really wore her out because she passed out as soon as car started rolling!

Hannah & Rian Part II

2010-07-23T15:17:00.000-07:00

This is Rian's account of hanging out with Hannah on one of those work days.

Hannah the Great

Back in the saddle, literally. I think I was ridden like your least favorite mule for at least 15 minutes…pure torture (you try it)! A bit of heeyah & giddeup are no longer my favorite expressions.

Hannah and I were sneaking wary sidelong peaks at each other when we thought the other wasn't looking, daggers cast in a glance. We have quite the history, her and I.

Believe as you will but, I'll tell you nay is she the innocent sweets, but a creature to be feared, a fireball, a banshee, the Kraken. Fear is inevitable, it starts in the pit of your stomach, then your knees start to tremble, the anticipation is agony…all of a sudden she's on you like a wet noodle, all hugs & kisses…eewww (sputters & spit), but don't think this is sincere, oohhh no, she's setting me up for something, I can feel it, just biding her time with me in the crosshairs, probably has the poison chapstick or something.

Torture AND humiliation…Barbie Tea Party. I'm at a loss for words, masculinity leaching from my Ego. I got a purse and a cup (hats optional), dress up shoes which were cute but, too small; I can't go on, I've said too much already…at least we got to dance as slammin tunes pumped from the RV/Pool/Disco machine, thing.

When Carrie arrived I was battered & bruised (you know, the Ego) and feeling fresh from the juicer nursing my wounds, though, I found myself wishing that work was for those who have nothing better to do…at least we had fun for a few hours.

Rian

Spaghetti Tacos

2010-07-23T07:32:00.000-07:00

Last night was pretty fun. Which, considering how yesterDay went, was surprising. During the day Hannah was not feeling very good at all. She also, still, looks sort of grayish.

Back to the fun. Hannah requested the famous spaghetti tacos for dinner. If you have never heard of this culinary delight then you will need to spend some more time over at Nickelodeon watching ICarly! It is one of Hannah's favorite shows and on it they eat quite a bit of spaghetti tacos.

We watched the show and ate the dinner and laughed. Sounds fairly simple, but it was fantastic.

Here is a picture of the fabulous meal.

I added Sriracha to mine, but then I can't think of much that isn't instantly enhanced by adding a little Sriracha!

Back on the Roller Coaster

2010-07-20T20:35:00.000-07:00

So, Hannah's blood counts were not high enough to start the next phase of treatment. Infact, they are so low that she is neutropenic. That means her ANC (the number that tells us her overall immunity and germ fighting skills) are under 200, which is the danger zone.

All of her appointments this week are now on hold. Monday we go in again to recheck her blood counts. Until then we just wait, wash our hands, and try not to get sick. I am beyond bummed, but I did half expect it. When Hannah woke up this morning, she actually looked gray. On the plus side, we have been through this before, so I know what to expect and that it will be ok.

Hannah, being Hannah, did, of course, rock a tutu at Children's today. Everyone commented and she was so polite with her "Thank you". She sounded so grown up. Even in a bright pink tutu.

I'm Beat!

2010-07-19T13:10:00.000-07:00

For some reason, today, I am exhausted. I don't know what my problem is, but I am struggling to keep my eyes open and I have a lot of work to do! I think I need to make some coffee. (thank god for Starbucks)

However, I haven't posted in awhile, so I thought I would write a little something. I would like to apologise in advance if this isn't very interesting!

Tomorrow, if Hannah's blood counts are high enough, she will enter the next phase of treatment called Interim Maintenance, or, as I shall refer to it from here on out, IM.

The phase we are in now, Consolidation, has been insane, and I am so happy to almost be done. Also, on Wednesday, if she gets the go ahead on the blood counts from Tuesday, she will have her next BMA. That will tell us how much cancer is left in her body. The last test before we started Consolidation was not good. I'm trying not to have expectations either way, but it's tough. I want them to say she has zero left soo bad...

Last week was a hard one for Hannah, but she is doing better today. She is eating plenty and is full of energy. It is great to see and gives me hope that she will indeed make counts.

She has been cracking me up playing with her groovy girl dolls. One of them apparently hit the other and Hannah, pretending to be the mom says "Sweetie, punching is inappropriate". It might be a, had to be there moment, but the way she says inappropriate-HILARIOUS! Maybe I will be able to get that on film.

Hope everyone is doing well and please a double prayer request. One, she makes counts tomorrow, and two, that Wednesday's BMA revels that magic zero cancer cells number. Thank you!

Really? Fish Sticks?

2010-07-16T08:32:00.000-07:00

Hannah stopped eating this week. She would ask for food and then it would just sit in front of her. I tried every kind of food that I thought she might eat. I was just about to give up hope of Hannah not needing a feeding tube and then yesterday, she ate.

Fish sticks. Two days prior she announced to me that she now HATED fish sticks. I had an extra box that Diane and Kathy brought over, so I took a shot. That did it. She ate four, which seemed like a ton at the time. Then, not too long after, she wanted more. For dinner, she had two big bowls of chicken ceasar salad.

We are back in business!

Fancy Dresses & Bad IV Needles

2010-07-13T16:43:00.000-07:00

Today, Hannah decided that we should wear dresses to the hospital. I was thinking she meant sundresses, so, I put one on. She came out in this.

She said she meant FANCY (drag all the syllables out for the correct pronunciation) dresses. I explained that the dress barely fits and does not have any buttons. Since she was willing to deal with the hassle of a port access in a non button shirt, I said ok.

Turns out, the port access was going to be hard no matter what. Children's has switched their IV needle supplier. They are going with a new kind that lists the size of the needle on the outside of the butterfly. Very helpful information to be able to read while the kiddos are accessed. Plus, their old supplier kept back ordering them.

Hannah hates this new needle. It is supposed to be the same size but it is coated with a silicone like product for comfort. Oh, the irony. I really don't know if that is the problem, but she complains non stop when this needle is used. It is hard for even one hour let alone when she is accessed for 5 days. The entire visit changes. It clearly hurts. I am going to talk with her doctors at our next visit. There has to be a better solution.

On the plus side, Hannah is going to start physical therapy to help her legs. She currently has considerable leg pain from the chemo and falls often. Thankfully, the physical therapy should be able to help her with that.

Hope everyone is doing well and please keep us in your prayers.

Wow, West Seattle!!!

2010-07-12T10:36:00.000-07:00

There are days in this new journey when I feel quite alone. I know we have people in our lives who love us and are there for us, but I do have moments. Like the long hospital days or the nights taking care of the throw up that make it hard to feel like anyone could understand. Then, there are the days like these. There may be(thankfully) few people who can actually understand what we are experiencing but we have certainly been shown that we have a LOT of people who care!!

Kathy Henderson and Diane Armstong are mom's from Hannah's West Seattle YMCA preschool group. They put together a garage-bake sale/lemonade stand this past weekend. Hannah's whole preschool helped out. They put out fliers and the famous West Seattle Blog even featured the event. People who we don't know and one's we do came together and donated their time and things all for Hannah. Kathy and Diane came over on Saturday to bring us dinner (btw, God love you all for the dinners!) and the proceeds from the sale. I don't think a one of us were prepared for what that would be. All three of us were in tears.

I really don't know how to thank everyone enough. I am overwhelmed by the show of support from our community.

This journey may have it's alone days but it has also been an eye opener as to how many really good people we have surrounding us. The out pour of support, the prayers, kind emails and calls, offers to help, dinners delivered, babysitting Hannah or the boys, the gifts of button down shirts and sitting still activities, the nice comments to the blog, the teachers and counselors(thank you Kitty) who helped the boys, the donations to the Hannah website, all of this is amazing. I hope I can convey what you all mean to our family right now. Thank you so much.

More Platelets Please

2010-07-09T14:38:00.000-07:00

We went in this morning to check her blood counts. She is going to need another platelet transfusion on Sunday.

Nana Fran came to the hospital this morning. This is a picture of them reading a very big pink Barbie book!

Wednesday she had a red blood transfusion. All these transfusion are time consuming but the fact that we need them at all is reassuring. The chemo is working and kicking cancer right out of there!

Here is a picture of Hannah getting the red blood transfusion and being silly.

Hannah playing doctor while we passed the time.

The chemo is having a big effect on her legs and feet this week. She mentions often that her has sprinkle toes (they go numb) or scratchy legs. Sometimes her hands and feet get really hot and to make her feel better we take their temperature. They are generally a degree or so hotter! I love those new thermometers. Just press a button, set the thermometer on the skin, wait a second, and presto. You the temperature of whatever the sensor was touching. Where were those when the boys were little?

Yesterday, Hannah got to spend the day with Grandma Patty. She had the time of her life! She has spoken of little else since then. She was just a normal kid having a great time and it meant the world. She got to step in a little baby pool, play with bubbles, and throw a ball around in the backyard.

Hannah, Taylor, Kristian, and little Rosie eating lunch.

Keeping busy!

2010-07-07T05:19:00.000-07:00

This is her week for transfusions, for sure. Monday she needed platelets and this morning we are going in for red blood transfusion. Most likely, she will need more platelets before the week is out. These are long appointments.

The red blood transfusion is at least four hours in a chair but with set up and everything, it is usually more. That is a very long time to be still with a four year old. I usually bring arts n craft type stuff. Unfortunately, I am not the most creative person on that front, so the usual was starting to be a bit boring. Grandma Patty gave us some Highlight magazines that have been very helpful.

Here is a picture of Hannah and Aaron making caterpillars while we waited for platelets to arrive. (takes two hours)

Yesterday, Hannah had two different types of chemo at Children's. The PEG shot and Vincristine. The PEG is a double shot to her thighs. They usually do this while they are doing the back pokes since she is asleep already, however, it isn't something they would specially give her anesthetic for.

Visually, the PEG is a scary procedure. It takes two nurses, they hold down her legs, and come at her with two very long needles. Fast. I was worried to do this with her awake.

I couldn't have been more impressed with Hannah. While she wasn't happy about it, she still handled it like a champ. She didn't scream. She didn't even cry. She just said "OW".

The funny part is that they promised her TWO stickers this time for doing so well. On our drive home she reminds me that she didn't actually get those stickers. I bet it's the first thing they hear about today!

Quick Recap

2010-07-02T16:17:00.000-07:00

This time around the chemo is behaving exactly as they expected. All her blood counts are down, red, platelet, white, and ANC. The ANC went from 1070 on Tuesday to 536 on Thursday. We will see tomorrow is she needs a transfusion of platelets or red blood. Starting Tuesday she will move to two other types of chemo medicine. She will remain on those until July 20. If her counts are up at the July 20th appointment then we can begin Interim Maintenance (IM) which is the next phase of treatment. Also, on July 21 she will have her next bone marrow aspiration (BMA). The results of that will let us know how much cancer is left in her body.

Also, Andrew came with us on Wednesday and had a great time. So, for Thursday and Friday BOTH boys wanted to come. They have decided that was enough hospital time and are not coming tomorrow.

Every now and then, I have a hard time with the fact that all Hannah ever sees anymore is the inside of the hospital or the inside of our house. Since April, and this is just the beginning. It is going to be awhile before she has enough of an immune system to be a normal child. My heart breaks for her as she tries to remember the songs from preschool or the sequence of morning circle time. Of course, there are those crazy boys and that ridiculous Rian... ;-)
Thank goodness we are a fun bunch!

Here is Hannah playing with the spinning wall contraption in the waiting room. It is everyone's fav.

Andrew and Hannah zoning out watching Bugs Life.

What a Week

2010-07-02T08:27:00.000-07:00

The chemo Hannah is on is tough stuff. As expected, she has been pretty sick. Tuesday night we had the throwing up and going to the bathroom at the same time. She got a new kind of anti-nausea yesterday that helped. She actually slept through the night last night! In a way, this is good because is indicates that the chemo is doing it's job.

Hannah just cracks me up, though. She has moments were she just wants to lay still or cry because she feels so bad. However, most of the time, despite not feeling great, she is in a happy mood and playing around.

I am posting this video even though it is long (one minute and thirty-two seconds) because it shows exactly what I mean. Plus, it's hilarious. The thing to keep in mind while watching it is that an hour and a half earlier she was stuck to the toilet.

A Real Baby!

2010-06-28T18:12:00.000-07:00

The Banana & Cadence

My friend Mackenzie came to my rescue today. I needed to get some work done and was struggling with the ever present four year old. So, Mackenzie came over with her new daughter, Cadence. Oh man, is she a beautiful baby! Hannah was in love! She got out all of her babies and did everything Mackenzie did all afternoon. She had so much fun. Thanks Mac & Cadence!

Invasion of Brothers

2010-06-26T07:30:00.000-07:00

Andrew and Aaron got a chance to experience Hannah's new world this week. I think it has been good for them. Today, is our last day of the five on, two off chemo schedule. The boys got to come with us for the last two. They are visiting with Tammy and Aiden today. The outdoors were calling them.

The first day the boys came, Children's had a cool hand washing demonstration. They put this day glow orange liquid on your hands and then you look under a black light to see the germs. Wow. Disgusting what is hanging out on your average hand. I may never shake again.

Here is a picture of my three (Hannah and the backs of the boys) listening to the instructions for the orange goo.

Hannah has been doing well with the chemo. She gets nauseous, tired, and grumpy but that's pretty normal stuff. Tuesday is the start of the next five consecutive days of chemo and it is a much harder week. I am just still so happy her counts are up and we can keep on the treatment! Thank you all for your prayers. Hope you have a great weekend.

It's Pajama Day

2010-06-23T21:44:00.000-07:00

My son, Aaron, had Pajama Day for his last day of school yesterday and Hannah was quite jealous about that. When she got up this morning to go to clinic she announced that it was her Pajama Day at Children's. Since we were going to be in a chair for six hours that seemed like the perfect plan to me. So, after picking out jammies from our friend Sarah and the blanket Tammy made, we headed over for our long day.

Hannah started out a ball of energy. She was chatting it up with all the nurses. So much that I had to hide the nurse call button. Hannah kept pushing it to get them to come back and talk! Luckily, we had Jen, who is super cool. She never seemed annoyed and even brought Hannah scratch n sniff My Little Pony stickers.

By the end of the day, Hannah was wiped out and nauseous. She stayed couch bound watching movies the rest of the night.

Tomorrow Hannah's brothers, Andrew and Aaron are coming with us to clinic. They have a sibling room downstairs and Hannah is kinda excited to show them where she goes everyday. My sister, who was here for the month of June to help, had to leave unexpectedly, so I had some last minute juggling to do for the boys this week. We are adaptable.

Hope everyone is doing well. See ya next post!

Yes!!

2010-06-22T13:40:00.000-07:00

She made counts! Hannah's ANC came back as 1571 today! She needed to be at 750 or above to restart chemo. That was quite the jump from last week. It is so nice to be surprised in a good way.

Tomorrow starts her six hour chemo treatment and then four more days consecutively. It is hard to imagine that just a few weeks ago I was dreading this appointment!

Thank you to everyone for all your prayers and support. It has been a super hard two weeks.

Just one more day

2010-06-21T12:26:00.000-07:00

Tomorrow we go to Children's. They are going to check her blood count to see if her body is ready for the next round of chemo. It has been a very long week of waiting. Please pray for us that she will make counts and we can keep on kicking cancer's butt! :-)

Keeping Perspective

2010-06-16T11:09:00.000-07:00

I haven't written an update in a couple days and I would like to apologise for that. It has been a struggle for me to find a way to relay the news with a positive perspective.

Hannah did not make counts again on Monday, instead they slipped even further down. Which means her bone marrow has not recovered enough to start the new round of chemo. We have another week of no treatment. Three weeks is the most she can go without treatment. I endlessly worry because for 95% of Leukemia kids, going off treatment for a bit is an ok thing. They were at zero cancer cells left in their bodies at the three week mark. Hannah was not. This time off was a blessing last week when I thought her counts were rising. Hopefully, with this week her body will recover and I will be worrying for nothing! Hannah is a strong little girl.

So, we have an appt. on Tuesday to check her counts again. If she makes it then we can begin chemo on Wednesday. Please pray for Hannah's body to recover enough this week to continue on treatment. I really appreciate all the prayers for Hannah.

Delayed Treatment

2010-06-11T21:53:00.000-07:00

We hit a snag in the road today. Hannah's next round of chemo was to start tomorrow and go through Tuesday. In order to start treatment though, her blood counts needed to be at a certain level. Unfortunately, her counts were not where we needed them to be. No chemo this weekend. We will go in on Monday and check again. Hopefully, they will have gone up enough to start chemo on Tuesday.

Candles in the Wind

2010-06-10T22:44:00.000-07:00

I saw this quote elsewhere but had to share it with you.

"Children with Cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light."

That is so my baby girl.

Auntie Mimi is here!

2010-06-09T22:16:00.000-07:00

My sister, Amy, who is a teacher, is up here from Arizona. She is going to be staying for the month of June to help me with Hannah and the boys. The new chemo is pretty rough and it will be so nice to have some in house help. Also, because she is a teacher, she is helping us with what Hannah should be learning and the best way to do it.

So, with the break from Children's this week and my sister here, I have been able to work more. When I got home today, Hannah got her laptop out and told me she was busy "working"! Plus, she looked at one of the note card's I gave her and let me know that I got the job. So, I got that going for me! Here is a picture of Hannah at her office.

Small Victories!

2010-06-06T08:48:00.000-07:00

The back poke, they give some of her chemo drugs directly into her spinal fluid, went much better this Friday! I talked with her Dr. about the reactions she has been having, which usually got me the vague "Some kids just react that way" answer. This time, I came armed with information. We went over in detail the medicine they were using for her anesthesia. Turns out, they were giving her a pain medication called Alfentanil that sometimes causes aggression in kids. So, we skipped it this time. She took longer to awake but she woke up happy. No wild eyed screaming, kicking, and throwing things. She also didn't break down later in the day as she did previously. She slept most the afternoon but she was a happy camper the rest of day and now....

A WHOLE WEEK OFF!!!!

Our next visit isn't until Friday. Our job this week is to keep her healthy so that her blood counts stay up. We need that to start the next round of chemo. Please keep us in your prayers and thank you so much for all the prayers thus far!!

Spinal Tap Results

2010-06-03T16:53:00.000-07:00

Hannah's doctor called today with the results from the spinal tap. They were testing the fluid in her spinal column because of the severe headache she had last week. They were thinking it might be aseptic meningitis or that Leukemia cells were in her spinal fluid, where they had previously not been.

The test results came back with NO cancer cells in her spinal fluid!! It did come back with extra white blood cells there, so Dr. Chow said they think she did have inflammation there, which is the aseptic meningitis. They gave her medicine for that as soon as they suspected it when we were in Children's so, we are good. She hasn't had another headache like that since, either, thank god.

Anyway, that's the news! One more back poke tomorrow then we get a whole week break from the hospital while they wait for her blood counts to go up. The next Friday starts round two of some really crappy chemo treatment. Hard stuff, but we will make it. Looking forward to a normal week! :-)

Fun pics

2010-06-02T12:59:00.000-07:00

Hannah is having a pretty chill day, playing puzzles and legos. I have been getting some quotes and emails done. (Thank god) I thought since I was on the computer, I would share some random pictures I like.

Hannah playing at Children's last week

Hannah taking a picture of me taking a picture of her!

Hannah wailing on the drums at Grandma Patty's house

My three, hugging on little Aiden, who came over to play.

Mmm Dinner!

2010-06-01T16:57:00.001-07:00

I wanted to say thank you to Kathy Henderson who has organized scheduled dinners to be brought to us and to all the families who are making us dinners! It has been such a blessing. Especially, now that Hannah is having such a difficult time wanting to eat. There are days she doesn't want a single thing we have in the house, but when dinner from her friends arrive, why that was the food she had wanted all along. She is pretty funny about it. As if I had just misunderstood some previous request!
Everyone has been so sweet, bringing drawings for Hannah and sometimes special drinks for the boys and I.