Already March...

I'm not really sure what happened to February. But it is already March. That means warmer days, longer days (we've survived daylight savings, whew!). Here's a quick "what's been up 'round here" kind of post...

 We met some new puppies at the Humane Society while we were there for a birthday party (how fun is that?!)

 We took Parker to meet Payton's doctors and nurses at one of her appointments. Thank goodness Aunt Bo could go help. 

It went from inches and inches of snow, to shedding the winter coats and playing when there wasn't one cloud in the sky this past weekend. 

 We played bingo using M&Ms, and cut Payton's hair big time!

We passed out Valentine's and special presents to all Payton's nurses in the Hematology clinic. 

Parker went to check in with the surgeons at Children's. He's been officially discharged! We celebrated with hot chocolate. Dr. A gave Parker the option of having him remove his tube in the office of having me do it at home. Parker chose to do it at home. So after dinner, we put on our brave, goofy faces and with a little help holding him down, I removed his g-tube for the last time. 

(And not to be left out, Payton made her silly face to go along).

Several people have asked about his stomach. Once the tube was removed, it took about a day and next to no drainage and it has completely sealed itself, so there won't be any need to go in and surgically close the site. The tube was in for just shy of 5 years. His stomach now looks a little like he has another belly button. Between his bowel perforation, other surgery for fundoplication and now this he's got 6 scars on his abdomen. I told him they were good practice ninja scars, which he seems to like. To celebrate the tube coming out, we decided to go out to lunch and go bowling - a major hit!

Not to be out done by her brother, 4 days later, during a regularly scheduled doctor's appointment, we got a surprise. Dr. Lowas said she's doing so good and hasn't needed any transfusions for a while that her picc line could come out. In one quick movement the nurses had it out and she was tube free too. She has just a little spot on her arm from where the tube was coming out. After 4 months of dressing changes and round the clock care of it, she was tube free.

This past weekend Payton and I had a little girl time and got to meet baby Oakley. Payton is now well versed in baby holding and working out her babysitting schedule with Victoria.

After 5 years, having kids without any tubes of any kind for the first time EVER has been a little weird. The closet once dedicated to medical supplies has been cleaned out. It is good, and a little odd, to have to shut off the little voice in my head that was always keeping an extra eye on those tubes. Let's hope everything stays that way.

Also, we're going through some growing pains here - new schedules, new people, new places. If y'all have a few extra happy thoughts, prayers, sparkles, or whatever else you have and wanted to throw a little our way, we'd happily take them.

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.