Saturday, February 04, 2017

Back in the Hospital

So Abby went down to her clinic appointment yesterday afternoon and because she is still doing so poorly they admitted her.  She's lost 10 pounds in a week, she's still very sore, still getting some fevers, and staying hydrated and getting all her medicine in is a big challenge.  So, in the hospital she will get some nutrition by IV, some anti-inflammatory meds that will help make her more comfortable (we can't give a lot of those at home because they can't monitor her liver which is already under a lot of stress), and some meds through her IV to help the pill taking struggle.   They also want to call in the infectious disease team to do a workup on possible causes.  If she had the serum syndrome then it would be over by now.  A virus could last this long but they want to dig a little deeper to see what's up.  So they will do a bunch of blood tests for less common things, including things she could have picked up in Japan.  They will also do a bone marrow test on Monday to see if leukemia has returned.  That's the basic information at this point.  Abby is doing pretty well, which is a huge blessing.  She did have a 104 temp last night but she is eating some things today and in pretty good spirits.  She got her IV put in while in the clinic and it went pretty well.  Those things just hurt, there's no way around it, but at least she feels better getting it in the clinic where things are more familiar.  It was leaking at first but was fixed and is now doing it's job.  We will keep you posted as best we can.  Mark is in the hospital with her and will be until I get the okay to come since I have a cold.  He is pretty worn out, as you can imagine.  You don't get much sleep in the hospital.  He's on antibiotics for a sinus infection so hopefully that continues to resolve.  We are quite the group!  Anna and Lily are troupers, not sick, plugging along and helping and being their usual giggly selves.  I am looking forward to having some time with Lily tonight while Anna goes to a birthday party.  Hope you all enjoy your weekends.

Friday, February 03, 2017


Wanted to give some specifics as I know a lot of you are wanting to know how Abby is doing.  We appreciate the support, meals, prayers.  Abby is about the same as she was on Monday's update.  She did do a bit better Tuesday and we got her out in the living room for some gift opening, a bite of cake, and an episode of Just Add Magic.  We saw lots of smiles which did our hearts good.  Wednesday she was a little more nauseous and struggling to keep things down and take her medicines more so than on Monday and Tuesday.  We've seen the fevers still going up to 100/101 and then back down.  Her pain is the same but we think she is moving a little better, still needing our help to make big movements like shifting in bed, standing up, etc.  Mark is with her at the clinic today since I have a cold.  They will check the muscle damage levels to make sure they aren't going up and do all the regular checks and blood work.  She also is going to see the physical therapist for some exercises to help with muscle rebuilding.  I included a picture of the cake they got her because it shows how wonderful the cancer clinic at Children's is.  I was just sharing with a friend that we are so thankful for them.  She is getting the best care and we can rest in that knowledge.  Big prayer requests would be for her to stop throwing up and be able to take her medicines (about 15-20 pills a day) and for her to start getting some nutrition in her body.  She's not getting more than 300 calories a day, and that's the high number.  It's been this way for about 3 weeks.  Also, pray for our family.  Mark and I are so weary.  We are not functioning at our best and that effects all areas of our life: work, parenting the other kids, marriage...
And lastly, pray for Abby's heart.  She's very down.  It feels like we can't reach her.  It's so understandable but it's heart breaking.

Again, thanks for the support as we continue on this road.

Monday, January 30, 2017

Home but still hard

It's great to be home but Abby is still pretty sore, emotional and tired.

The fever is much better now and it staying down around 100 or lower with Tylenol or Advil.

The biggest prayer request would be for the leg pain to go away. It would be really nice to get her out of bed for her birthday but walking to the bathroom and back is about as far as we have gotten her.

So, not the birthday we were hoping for but at least she is home.