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.

Topping Her Off

This is the start of the third week Payton has gone in for twice weekly blood draws. She wants to know "do I have to get a poke today?" She mostly does ok, but if they draw from her arm instead of just a finger poke it gets a little rough.

So, basically at this point, her numbers have stayed the same type of bad since we started this. Her red and white blood cells are in too low. Her platelets, neutrophils and hematocrit are so low they put her into critical results. Her bone marrow is still working at just 10% of what it should.

The doctor has told us that at this point, this is all happening as a type of autoimmune process. With all the testing they did, they can't find any virus source that is causing this to happen in her. We are continuing with some genetic testing at this point but that won't provide any more insights for a while.

Because of her low results, she's officially acting different. It is catching up with her. The doctor gave her some time to see what her body was going to do but it just isn't keeping up. She will have her first transfusion Thursday morning. They will continue to monitor her counts after that and see what happens. Once she is at a point this is happening more rapidly, we will begin to  prepare for immune suppression therapy.

Updates more later this week after we see how she does. Thank you for the continued prayers, checking on us and thinking of us. It's appreciated more than you know.

Lots of people have asked what can they do. Right now there's not much here. If you want to help, please donate blood. Or consider getting screened to be a bone marrow donor.

A little bit of normal

After the whirlwind Payton's new medical stuff has caused, this past weekend we had a little bit of normal. Since it's an outside event, we hit up Touch A Truck ( or Touch A Tow Truck, as Payton says).

On Sunday, we went to Mighty Mavericks at University of Nebraska-Omaha with our friends from Respite Care. So much playing with all the athletes, so fun. Parker had a blast. Payton was a little whiny but was getting into it after a little while.

For those of you waiting....a Payton update coming later this week. Stay tuned!

Plastic....what???

After a week or better of bruises that were in weird places and that I couldn't explain, I was met last Tuesday with teachers and nurses concerned because Payton had petechiae in random places and all over. They brought up calling the doctor to check since she isn't on any meds that would cause that and both things were new. So Wednesday morning, I did and we were in with our regular doctor by lunch time. Within 2 hours, Dr. Woodford was calling saying her bloodwork wasn't good and we needed to go to Children's Hospital. He'd already called and they were waiting for us. I picked her up and we were on the 4th floor in no time.

Fairly quickly, we were in a permanent room, had lots of blood taken and an IV placed in case they needed to run anything (that last part took an hour, 3 nurses and me). It was obvious pretty quickly that things were not good. Her hemoglobin, white blood cells and platelets were all down. By Wednesday night the plan was on that she would have a bone marrow biopsy Thursday morning. The procedure was quick and thank goodness, she tolerates anesthesia well. She took her favorite giraffe friends, Doc, with her and got a lift in the wagon.

She recovered with Aunt Bo, some lunch and a little Sleeping Beauty while I ran home to shower and change.

We spent the rest of the time just hanging out in our room. Because of tests they were running, she was technically in isolation so we spend a lot of quality time in her room. The best thing about being there was the view and watching the sun rise, which we did every morning.

 By Saturday morning, it was over. She had had enough. She wanted out. She wanted to go home. She was mad. So when the resident came in to the room and asked how it was going, I told him...."she's officially mad and pissed off and she wants to go home" (ok, I was too). Parker was reprtedly saving part of his food for her when she came home. And lets be honest, the little runt can't really afford to skip any calories.

The doctors came in with a diagnoses, a plan, and an agreement to send us home. Payton has what we're calling for now Aplastic Anemia. Bascially, her bone marrow, which should be working at 100 % making new blood cells for her, is only currently working at 10%. All her counts were still low but steady and hadn't fallen off any more. She will follow with the hematology team at Children's indefinitely, which for the foreseeable future will include twice weekly blood draws in the clinic to monitor her levels. She could go home, with some strict outlines and rules for what to watch for. We agreed, signed off and on the first football Saturday, she suited up and we were out.

She and Parker were over the moon to see each other after 3 days. The first thing they do together - pull out one of the giant tigers and proceed to be doctors to take care of him. 

We were told not to take her around lots of people, avoid big crowds, etc. Basically, if she catches something her body doesn't have what it needs to fight it off now and could be bad. So for the weekend we decided the highlight would be hitting the Labor Day Parade. Fresh air and sunshine to wonders for everyone. We even saw "Star Wars guys" and Ana from Frozen...score!

Over the few days we were there, we had lots of visitors and were beyond spoiled by people making sure we were taken care of. Thank you isn't enough to say, but it's all I have. 

The best boss in the world made sure Payton and I both had what we needed. :)

Yes, I was taken to dinner at Old Chicago and I'm that annoying person that took a picture of my food. It was good. The company was one of my favorite people. And I just wanted to. 

 Parker enjoyed a little one-on-one time with Aunt Bo and Grandma shopping at Target and pounding some chips at La Mesa. (Yes he's wearing a bow tie to dinner).

To answer some of the questions we keep getting -

We don't know exactly what's next right now. Bone marrow transplant and immune suppression therapy are both things that have been brought up, but right now, we just don't know. We're waiting for more specific results before anything is decided on. 

She's doing ok. She is a little wimpy and her appetite isn't quite normal, but she's ok. 

Is this a preemie thing? No one knows. Maybe. Not necessarily. I asked...no one can give a definitive answer. 

The links above are more explanations on what each of those things are - in case you want to know. 

We didn't have have to get platelets or transfusions yet. It doesn't mean she won't at some point. Without counting this, the twins together in their short little lives have had together 13 blood transfusions. If you've ever considered giving blood or platelets, please do. 

Yes, if you want to visit, it is ok. She loves everyone and a chance to show off (so does Parker). But please, if you are sick, wait until you're well. You may remember our days in winter lockdown....well, we're kind of back in the same type of situation. So if you come over, don't be mad if you get handed hand sanitizer :)

Yes their birthday is coming up. I'm tenatively planning a birthday party. I'm waiting just a while to see what happens and what directions we're given before we decide how to continue. 

The past week so many friends have gone above and beyond to make sure I'm ok, that she's ok and we both know we're thought of. You are all amazing and I can't even come up with words to thank you. Bags of sunshine, coffee delivery, tylenol delivery, special trips to see us, things to keep us busy, just checking on us...all of it means the world. I'm so blessed and grateful...there are no words, just lots of tears. 

Fear and love cannot inhabit the same moment. Choose love. Every time.  -Kristin Armstrong