NG Tube Mishap Turned Positive

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!

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

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

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

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

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

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

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

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

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

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

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!