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