CHECK UP

July 23, 2014
  We were scheduled to see Dr. Kane at 11 this day.  We just have to go to Killeen which is about 35 minutes away rather than the hour drive to Temple.  He is at a clinic there every other Wednesday.  It has been about 12 days since Jake has been stuck with a needle.  I took both boys over with me and John left work to meet us there.  We walked in and Jake smiled when he saw the same nurse from the Temple office-not the bald one, but still a familiar face.  Jake, Jaden and I went back and did all the vitals, everything looked good.  Jake felt good.  The only thing was the petechiae came back on his chest.  It wasn't nearly as bad or noticeable as the first time back on July 4th, but it was there.  I had updated facebook and people were sending messages that he was going to have good numbers and everything would be fine.  I just didn't feel that.  I knew they would be low but a little part of me believed them and I wanted the highest numbers we could have.
  The last time we had blood work done, Jake's platelet count was at 39 (really 39,000) and normal range is 150-400 (150,000-400,000).  In my head I was telling myself I would be okay with 50.  I felt that was reasonable, it had been two weeks since the IVIG treatment and we were told his body would continue to improve.
  John got there and met us in the room.  Dr. Kane then came in with a medical student and we all discussed Jake.  Jaden was in the room and hearing all this as well as Jake. Dr. Kane was really happy with how good Jake looked.  He was full of energy, moving around fine, tan from being outside and only had a couple of concerning bruises.  He had plenty on his legs, but nothing alarming.  He noticed the petechiae as well.  We talked about what could happen, what we would do in certain situations and then we were done.  John and I felt relieved after speaking to him just as we did back on July 9th. Dr. Kane really seems to know what he is talking about and has a plan of action.  He takes his time with us, and really interacts with Jake.  He told us that he would call us later that day or even the next morning with results.  Since we were at the clinic, he wouldn't get the results as quickly as he had in Temple.  I should have remembered this with our encounter in Lampasas.
  John took Jake to the second floor to do the blood work and Jaden and I stayed and finished talking to Dr. Kane.  I asked him if I could go back and see results from Jake's labs before and see his platelet counts.  Referring to just normal visits and well check ups.  He said it wouldn't be there since the platelet count is not something that is ordered for a routine check up.  So with that comes the question, what is Jake's normal platelet count?  Was it ever in the 150-400 range to begin with.  What if Jake was only ever at 100 in his whole life?  That's the unknown.
  After talking with Dr. Kane and doing the blood work, we left the clinic and waited for his call.  We were left with 3 possibilities:
1.  Jake's platelet count would be high, we would monitor over the next couple of months and it would stay high....this would be over.
2.  Jake's platelet count would increase but not to a normal level....but it would be constant and normal for him to where we all felt he was safe.  He would be monitored but no treatment would be needed.
3.  Jake's platelet count would be low, we would see if treatment was needed and we would monitor more closely.  With this one, it might be low some weeks, then high, then low again and just all over the place.
Obviously we were praying for option 1!!

  We went home, swam at our friend's house to get our minds off of things and I kept the phone with me.  Nothing at all.  4 o'clock-no call.  5 o'clock-no call.  My dad had called and I told him I guess it will just be morning when we find out because it's already 5 and I knew Dr. Kane had to go back to Temple that night.

At 6:30 I took the boys to VBS.  Still hadn't heard anything and just assumed it would be the next morning.
8:00 comes and my phone rings.  It said No Caller ID.  I answered and it was Dr. Kane.  This could not be good.  What doctor calls a patient at 8 pm?!?! ugh, there is that feeling in my stomach again.  He said that Jake's platelet count came back and it was low again.  25.  I just said, "Okay."  I felt defeated, sad, angry, mad....we had done the IV treatment will only positive thoughts and KNEW it would work for Jake.  Dr. Kane said if Jake would have responded well to the treatment, he could be at or around 400 with it being 2 weeks later.  This was a huge let down.  So now we had three more options.
1.  Wait a week, go to Temple to do blood work at the hospital, get the results and possible do the IVIG treatment again.  This time we would do it slower and monitor him longer since he had such bad side effects the last time.  
2.  Wait a week, go to Temple to do blood work at the hospital, get the results and start a 5 day steroid treatment.  This would be able to be done at home, takes a little longer for the treatment but doesn't have many side effects like the other.
3.  Go ahead and start the 5 day steroid treatment the next day, then go to Temple next Wednesday, do blood work and see where we are after the steroids.

I didn't want to wait, I feel that is just wasted time and frankly, I want this whole thing to be done!  So, we elected for the steroid treatment at home starting the next day and will go back to the doctor Wednesday.

I hung up with him and told John what Jake's platelet count was.  As soon as '25' came out of my mouth, here came the tears again.  It is the most miserable thing in the world to do what you think is best for you child, see them in pain, and still no good outcome.  Why did his body not respond well to the treatment?  Why are we doing this at all?  What do we do next?  All these questions come back and I feel we are at square one again.  It's frustrating, nauseating, tiring all at the same time.  I text my mom but couldn't even talk to her on the phone.  John spoke with my parents until I could call them back later that night.  He also had to go pick up the boys from VBS right after that.  I was done for the night!