Hannah Gets A Wish!!

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

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

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

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!

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

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

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.