9 days and one treatment done

Last Monday Payton and I checked in to Children's Hospital for what would be a very long 9 days.

Monday night was spent getting settled and prepped for everything that was coming Tuesday. The worst part of our night was the 6 attempts it took to get her IV started. This led to her asking every single person for the next 8 days getting asked by her "what are you going to do to me?"

Tuesday started early with getting platelets to prepare her for getting her picc line. Thank goodness for Madeline, a nursing student, who painted her nails and hung out with us all day. she was even able to go with Payton to the operating room when it was time to do her picc line.  It took them a few tries to get the line just right and placed. She was pretty happy it meant her IV could come out, but she was really loopy for a while when she was done.

Tuesday afternoon as we started running her infusion medicine, they were on the lookout for any kind of reaction and they weren't disappointed. Payton had a hard time tolerating the medicine at the full rate they wanted to run it at. She broke out in some monster hives that started on her face and rolled all the way down before they were done. We had to take a break, slow it down and take a few rounds of Benadryl and hydrocortisone to get it under control. (There were them at a good moment as they started coming out).

We spend a lot of time trying to waste time. Painting, playing, eating pancakes....

After her initial reaction, she did really well and tolerated things with all the medicine. She was a favorite with the nurses as she was quickly scanning her own meds, running the machines, etc. Payton is really a good patient, if you can get past the occasional flare up of attitude from the steroids she's on.

Sunday afternoon got a little long and she quickly was having IV pole races in the hallway with her neighbor, who ironically was named Parker and is also 5. We got to be buddies with him and his parents and they were quickly making the nurses a little nuts.

Monday afternoon and evening they decided to give her blood and more platelets to top her off before sending her home. She took a good nap while we waited around.

When she woke up we got a special visit from the UNO hockey team. We even got a picture with them and her new friend Parker. They brought goodie bags, signed posters, and even tickets to a game in a few weeks. So cool!

After dinner, Molly came to see her to make a special tutu. It was totally a hit. She wants to make them for all the nurses and take them back there (thank you Molly!!!). After Molly left, we took the tutu out for a test spin around the floor.

Tuesday morning we got the official ok that we could go home after some final stuff was arranged. We'd be out shortly after lunch time. After getting blood, platelets, eating dinner and getting some sleep, she was in overdrive. We spent two hours lapping the 6th floor. When the doctor showed up and asked how she was doing she told him "I've been doing this for hours. What do you think?!?!". Thank goodness for a doctor with a sense of humor!

We were able to go down to a special carnival they had in the lobby while we waited for final supplies and orders. It was a life saver at helping fill in some time while we waited, since she knew she was getting to leave soon.

 

Shortly after lunch, I'd done my education with homecare, we had all her scripts and we were ready to roll. After 9 days we were breaking out of there.

 

As we were leaving, she told me the sunshine felt so good and all she wanted to do was go to the library. The first thing we did when we got home was to take a bath so she could be clean and wash off a weeks worth of hospital stuff. She's fine to leave the picc line out, but some friends from my work let me borrow some Edema Wear. It's soft, woven, flexible and acts as a good sleeve to protect it so she doesn't catch it on anything. She was a little nervous about her "tube" in her arm, but then we talked about how now her and Parker have special tubes, and some of her friends at school have tubes, she's ok with it now. That and it means no more pokes for now on a regular basis.

We go back to the doctor on Friday. We'll resume twice weekly labs for the duration. She's on 3 more weeks of steroids - heaven help me. It is a wait and see game at this point it this therapy triggers her body to do what it's supposed to do or we move on to another step.

For all the cups of better coffee, messages, tutus, boxes of sunshine, balloons, and turns sitting with her so that I could step away......thank you.

To Kylie, Danielle, Lynn, Lynette, Kerry, Jess and all the other amazing nurses who take care of both of us for 9 days.....thank you will never be enough. You are now included in a list of nurses who will forever be in our hearts.

Happy Birthday.... (and upcoming plans)

5 years old. Cupcakes at school, a successful doctors appointment, dinner out, a visit with Aunt Bo at her ice cream house. All starting with a 4 a.m. wake up call to confirm that they were finally 5. Ending with telling them goodnight and Parker telling me "I can't wait till I'm 6".

And yep....even mom had cake at work today. Celebrating their birthday, survival, the fact I took a shower this morning and all my clothes were on the right way. :)

And now for what's coming next over the next week or so...

Payton will go in Monday afternoon for her usual lab draw but will be in the afternoon. When she's done in the clinic, she will be directly admitted to hospital. Monday evening she will get fluids and platelets in anticipation of Tuesday, where she will get a PICC line. We've talked with several doctors and she just isn't a candidate for a port. After the PICC line is in, she will begin 4 days of infusion treatments that involves a cocktail of 4 drugs. The hope is that the treatments will jump start her bone marrow to do what it's supposed to. It will be a wait and see game for a while after we're released to go home. She will be on a couple of her medicines after she comes home for a while, and we'll be managing her PICC line, as well as being bumped up to 3x a week blood draws.

We'll keep you updated how things go, but for next week that's what will be happening here. For updates, visits, etc., just get in tough with me.

More to come!

Here's the skinny, the deal, the timeline...the scoop

For several weeks Payton has just been in a wait-and-see pattern. Last week when she finally got wimpy enough, she had a transfusion. She was pretty quickly having better mood, appetite and color. After another week now of watching her, her numbers are low still but are better (yay!), however her little body isn't doing what it's supposed to do and keep making it better (boo!). The genetic tests are all back and they can no cause of the aplastic anemia. This is all just an autoimmune situation.

Sooooo......the doctor is ready to keep moving on.

We will be moving forward with the immune suppression therapy, most likely the week after next. She will get a central line - a port or a picc line - prior to it and some platelets to help her prepare. The central line will be in for a while, and she will come home on a couple medicines for a little bit, including one I'll have to learn to give her by injection for a little while ( or take her to work and let one of my nurses there give to her). Doing this therapy is a 4 day admission to the hospital for her if all goes well.

Next week between her and Parker there are 4 appointments on 4 different days, prepping to turn 5 next week, working out all this that is coming and this little things called work. If you've never been asked to pray for good coffee before, I'm asking for you to do it now.

As we get more information about the schedule we'll be trying to arrange things for schedules. Trying to keep things as normal as possible for Parker and someone will have to stay with her at all times. I'm not always so good about asking for help when I need an extra pair of hands, someone willing to play ninja turtles or someone who is willing to talk about Frozen or rock out to Taylor Swift. I may be asking for some help.