Preparing For HD Mtx

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!

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

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

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

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!