The Great Physician

Yesterday was a whirlwind and so much happened.  My mind is all over the place and I am still trying to absorb all that is going on, but I will try to make sense in this post.  Sunday night into Monday we were so concerned about her high fevers and the possibility that she was fighting a bacterial infection in her blood.  Like I said yesterday, her fever was really high and it was hardly coming down with Tylenol.  This morning in rounds, the one doctor who was the resident the night she was really sick said she thought it quite possibly was a bacterial infection in her blood (scary!!), but as of today her blood culture is still negative.  We are almost to the point where we can put that behind us, but are definitely feeling better about that.

So Sunday morning, her fever finally broke and for a few minutes we felt some relief.  We thought she was going to start getting better and we would be free to go home soon with this behind us.  Shortly after her fever broke and things seemed a little less scary for us, our doctor came in and told us about this possibility of a blood clot in her brain.  We were told that they were going to look into this further with an MRI that was scheduled at 4p.m. so it was a long day of waiting.  I think much of the day yesterday we were pretty much in shock and were just putting one foot in front of the other and were doing our best to keep functioning.  

At 3:30 we were taken to the PICU for her to be sedated and taken for her MRI.  I had never before been on a pediatric intense care unit and I was nervous about it.  Our floor is so sad because it is all kids fighting different cancers and equally sad in the PICU as there are many kids fighting for their lives there too.  It was hard to be in there and as I held Abbey before she was sedated for her procedure, my heart was breaking for her and so many children that know hospitals all too well.  

Her MRI went well.  She was sedated in my arms and woke up with me standing right by her bed.  Although I was away from her for an hour and a half, to her it felt like a few minutes.  As I watched them wheel her away, the tears flowed and I couldn't wait until she was back in my arms again.  Once her MRI was done we knew it would take some time as we waited for the doctors to look at the findings.  

We came back to our room and ordered her dinner.  It was the first time she had eaten anything in a couple days so it was wonderful that she even had a little bit of an appetite back.  We read books, ate and snuggled with her pink blanket while we waited.

Finally, our doctor and nurse practitioner came into our room and confirmed that Abbey does have a blood clot in her brain.  They talked with us for a long time and explained exactly what that means and how we are going to go about treating it.  They feel that her one chemo that she got in the beginning of March which was the 2 shots in her legs (if you follow our blog, you remember me talking about those shots) is most likely what caused this.  She had those same shots the first week she was diagnosed and then the second set was about a month ago and she never has to get them again in her treatment.  A side effect of them though is blood clots.  As our doctor and nurse practitioner (Barb) stood in our room and confirmed this, Barb was in tears.  She said that she felt so bad because I kept telling them about her eye pain and headaches.  It would be easy at this point for me to say "I've been telling you guys about her eye pain and headaches for weeks" and to be very upset that these tests weren't done sooner, but we know and accept the fact that just like us, our doctors and nurses aren't perfect.  Like us, they make mistakes.  We also know that the Great Physician is watching over and taking care of this baby.  I think more than ever we were reminded of this these last couple days (I will elaborate on this in a minute).  So I gave Barb a hug and assured her that we found out exactly when we were supposed to.  Yes, this is hard to accept, but we are confident that Abbey is going to be just fine and get through this too!  We have seen her overcome the impossible so far and we expect nothing less in this new finding too.  

So, back to what this means and how we are going to treat it.  The blood clot is not in a vessel, but in a small space in her brain.  Children do amazingly well with these kinds of clots.  The one doctor told us today that if this clot was in an adult, they'd be in the ICU immediately (not very comforting to hear!), but they said that children usually do fine with these once they are found and the treatment almost always gets rid of them.  Now here's the yucky part.... she will have to get 2 shots a day until this is gone.  And the estimated time that they said it takes to get rid of them is 3-6 months.  :(  But, they said the shots are similar to those that people with diabetes use and they are very small and not very painful.  She already got one last night and two today and although she wasn't happy about it, she recovered quickly.  We will be learning how to give these so when we are home we will be able to give them to her.  I already feel like a nurse (and sometimes a doctor at this point) so I'm not too nervous about this new task set before me.  Of course we feel horrible that she has to get these, but we are extremely thankful that surgery was never brought up and these usually do not cause a problem.  She has gotten so used to her port being accessed with a big needle so we are praying that eventually she will get used to them.  It's heartbreaking to have to do it, but it is to make her well and we will do what we have to do.

We have felt God's hand in amazing ways these last few days as we've been here.  We came to the hospital this time for a fever.  She was admitted for high heart rate and then I just happened to mention (again... for the 50th time) to the first doctor that was in our room about her eye pain and headaches.  She hasn't even complained about that for a couple days and really had nothing to do with why we were here this time, but for some reason God put that in my mind to mention to him.  Without a second thought he said they'd order a CT scan for that day and then we found this.  If she wouldn't have gotten this fever and then this virus (or whatever else she's fighting right now) we wouldn't have been here and we would be home with this little clot growing in her brain.  Although very hard to accept this new challenge set before us, we know that God is taking care of her and we have been so comforted by that these last few days as we've gone through this time.  He truly is so good to us and we have been thanking Him continually for how intimately involved he is in our situation.  He's got our sweet girl in His hands and we have been resting in that.

So since we have so many amazing people out there following Abbey's situation, we are going to ask you all to continue praying for our girl.  Please pray for this new finding with the blood clot.  Pray that she would somehow get used to these shots (I know, it's sad to even think about her needing to get used to something so awful), but please pray that she would learn to accept them somehow.  Again, only something that could come from God, but we would've never thought she would be so accepting of a big needle being put in her chest through her port so often and she actually just sits, holds her shirt up for it and doesn't flinch.  Pray that this clot would clear up quicker than they are expecting.  They also told us that she would be getting weekly eye exams because when she had her eye exam yesterday there was something (I don't remember all the big words and exactly how to explain it) that they will be able to watch in her eyes to see if the clot is getting smaller.  The eye exam was less than pleasant and the doctor first had to put several drops in her eyes and then had to pry them open to look at them both with a very bright light.  Not pleasant to see her go through, but something she will have to get used to so please pray that she would start to accept this too.  Pray for her blood culture to again be negative in the morning.  At that point they will start to stop some of these endless antibiotics she's getting.  Please continue to pray for her diarrhea to stop, for her bottom to heal and for this virus to run it's course and get out of her system.  For her to start to feel better and get stronger.  And please continue to pray for her leukemia to completely go away and never come back.  For her to be able to finish this phase with no more problems and for us to be able to get into maintenance soon.  

Thank you guys for your continued support and love!  It means the world to us.

A couple more things I just thought of....  they are saying we may get to go home on Thursday or Friday :)  I also wanted to mention that this blood clot will not alter her treatment for her leukemia in any way.  They still expect her to be able to finish delayed intensification soon and be in maintenance right after (we may be pushed back one more week and not start this Thursday, but next since she's just getting over this virus), but the doctors assured us today that nothing has changed with her treatment plan.   

And if you stayed with me this whole post and are still reading... thank you!  We will continue to keep you posted on our Abbey :)