THE BIG DAY

     We got up this morning and headed to my parents to drop Jaden off.  Then we continued to Temple for our appointment.  Jake was excited when we arrived because he remembered the playroom and nice nurses but he was still a little unsure about it all.  The lady checked us in and we were called back soon afterwards.  Once we were in the room, I asked the nurse about the numbing cream to help Jake since he had been poked so many times recently.  He has never cried but really how fun can that be even if it doesn't hurt you?  They did have it but said it takes about 30-40 minutes to get completely numb.  We were really hoping for a fast visit so elected to not use it.  Instead they were going to poke his finger instead.  We weren't sure if they would get enough blood but with his test they only needed a small amount.  A different nurse came in with a heating pack for his finger then started to get everything ready. She poked Jake right in the middle of talking to him so he had no time to pull back.  He just said, "Hey that didn't hurt!"  Surely enough, Jake was able to fill the whole little vial with blood and she wasn't even squeezing his finger!  This made me a little nervous that it was so easy to come out.  They had to put extra gauze with the band-aide as it was still bleeding.  

     When Jake was done, he went to pick out a prize....of course he asked for a prize for his brother as well.  Then they gave him extra stuff for being so "brave and cute".  They were offering him food, snacks, toys, everything....they really do love our boy there!  The nurse that did his blood work today called Jake over to send the blood to the lab.  They have a system that reminded me of the one at the banks, where you watch the tube go up and over to the ladies in the bank from the drive thru.  Anyways, Jake got to push the buttons and send it off.  He was so excited to be helping.
     
     Jake and I headed down to the play room since I knew it would be a little wait.  After a short while, Dr. Kane came in and got us.  I was nervous to see him but excited at the same time.  We had been praying for a good visit and high numbers and I really wanted to believe it would happen.  There was just a part of me holding on to the fact that I could see a low number again-below 30-since I had already heard 6 of them!  He asked if we had any guesses on what the numbers were.  My immediate response was "Nope...what are they."  He asked again for us to guess.  Up to this point, I really liked him and respected him but if he was making me play this silly game and it was a low number, I would not like him anymore!!  John guessed 50.  I said, I wanted over 150 but it had only been a week so I was skeptical.  Then he pulled it up on the screen and it was 194.  I looked again and again, 194!!  I looked at Dr. Kane and he had the biggest smile as well.  "We did it!  Jake responded well to the steroids and now he is in the normal range."  Oh my God!  I could not believe my ears or eyes!!  Hallelujah! 

     Jake got on the table and Dr. Kane did his exam as he does every week.  I was so excited and just kept looking and John telling him I couldn't believe they were so high!  Ugh, we were finally able to take a breath and breathe!  

     Now we just have to monitor him.  If Jake seems like he has more bruises than normal, darker ones, or bruises in places that should be bruising, I will take him in to get lab work done.  We already have lab orders done (one of the reasons we love this doctor) and he will leave that up to my discretion.  We also will have to look for the petechiae to come back as that seems to be one of the main indicators that Jake is low with platelets.  Other than that, John will take him back to do more lab work in 2 weeks, on August 12th which is my first day back to work.  If the lab results come back higher, we get to wait another 2 weeks.  If they come back lower, we have our appointment set for August 13th in Killeen.  

     Clearly we hope that the next two weeks are good and healthy for us.  We pray for more good numbers August 12th and that we can cancel our appointment on the 13th.  From here on out we will go every 2-4 weeks for a while to monitor his numbers.  As long as they stay in that normal (150-400) range then we are good and will stop seeing Dr. Kane after 6 months or so.  We pray this was the solution and the steroids were able to get Jake's body back on track.  I asked if there was anything Jake could not do at this point...short answer=No.  He can do what he wants (with caution of course)!!  :)

JULY 29TH

     For those of you that have read from the beginning, this is now the 13th post and I'm FINALLY caught up and in real time!  I'm sure the previous ones are crazy to read with past/present tenses and all but I'll fix that later.  As for now, we are getting ready to go see Dr. Kane again in the morning.
     We have a bag packed for the worst case that Jake has to be admitted again, Jaden has all his stuff to stay with my parents for the night if needed and the boys are in bed.  Of course we want a good report, a high platelet count and to come home early tomorrow but it doesn't hurt to be prepared.  People have asked me what's next or what happens with Jake....I don't know.  All I know is that we will go back to Temple tomorrow and do more blood work.  Since we will be at the hospital, we will get the results back rather quickly.  Once we know his results we will learn what is happening next.  I don't know what we will do if they are low.  I don't know what we will do if they are high.  I just don't know.
     I do know that we have prayed and prayed for a high platelet count!  I am hopeful that his numbers are higher, but then again I was sure they would be higher than 25 last Wednesday and they weren't.  I don't see how they can still be low after 5 days of steroids though!  I'm afraid to be too hopeful because of the let down when we hear a low number.  It's crushing, heart wrenching and infuriating all in one. Honestly, it's nauseating to sit here and think about right now.  So, enough on thinking about that....
     The other thing I worry about if they are high is that he will be steroid-dependent.  We will go over that more with Dr. Kane in the next couple visits especially if he does have more doses of steroids.  This basically would mean that his body is dependent on the steroids to keep a normal platelet count which we would not want.  His body has to learn to do this on its own again.
     As I sit here getting ready for bed, I just can't help but ask myself that one word question again...."Why?"  Why did this even happen to begin with?  What happened inside of him that got his system so out of whack and turned his body against his platelets?  Will it ever go back to normal?!?
     I can only pray it will.  I have to remind myself that God knows why, God knows when and God will lead us in the right direction to get Jake the help that he needs.  I thank God every night that even through all this worry I have, Jake doesn't even really know he is 'sick'.  He heard us talk about it at first but I have made a very conscious effort to not say key things around him if I even have to talk about it.  I just say things like "We are going back to the doctor or hospital for a checkup."  I don't want him to think of himself as being any different or to have a label put on him.  
     If you saw Jake today, he looked great!  He had very minimal bruising, and the ones he did have were only on his legs.  He has no petechiae, no fever, nothing.  He looks like every other healthy, four-year old child out there.  For this I am grateful and thankful!  
     Thank you again to those that are calling/texting/messaging us to stay updated.  You are not bothering us at all.  If we are busy-we just won't answer right then. :)  Starting this blog really has helped me in so many ways and I've heard from some of you that are personally touched by this.  It brings a smile to my face to think about.  I know some think this is such a minor thing and "it's only one small number" but to them I would just pray for understanding and not judgement on how we are responding to this.  Jake's 'one small number' could drop at an instant and if it gets as low as it was, the unimaginable could happen in the blink of an eye.  None of us would want that!  We will continue to blog and update all of you as things happen and hopefully tomorrow will be the start of only good blogs showing the miracles that only God can perform!  Goodnight, say a prayer for Jake, and God bless!
~Stephanie

STEROIDS

     We started steroids Thursday the 24th.  We had to give Jake a dose in the morning and one at night.  All in all it went pretty well.  He was rather hyped up Saturday but we went out for the day and had three birthday parties to go to, so I was sure he would get worn out.  We barely made it through the first one and Jake passed out in the car back to Lampasas.  He missed the next one but was able to get caught up on sleep.  Monday was the last dose and he had the hardest time going to sleep.  He was still awake at 2 or 2:30 AM!! I even had him lay with me to try and go to sleep but he just moved, tossed and turned and just could not stay still.   He was not tired at all so I let him just play in his play room.  I wasn't sure if it had anything to do with the steroids or not but I was glad we were done with them.  I'm not big on any of us taking medicine.  I'm not against it by any means but I hate when any of us are in a position where we have to take medicine.  

     Monday I called a sweet lady that also has a son with ITP.  She had contacted me while I was in the hospital and we had text off and on throughout the weeks, but I finally was able to call her.  I tried a couple of other times, but I would get nervous or just emotional.  I'm not sure why since I didn't even know her, but maybe I didn't want to hear bad things?  Anyways, I called her and it turns out our kids were at the same VBS in town!  We were able to meet up while we picked up the kids and talk for a short while.  Her son had never met anyone with ITP so it was so sweet when she introduced her son to Jake.  Even though both of us obviously don't want anything wrong with our boys, it was comforting to know someone local who had already been through the things we are currently going through.  Apparently, there is nobody even close in location to us with this blood disorder.  :(

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!

GOT A WHAT IN HIS FOOT?!?

July 22, 2014

It's been pretty calm since the last update.  I was able to start working in my new classroom since the floors were done.  I got a job for the next year in town.  Still teaching fourth grade, but no more driving, I'll be right up the road from my house and I'll teach at Jaden's school.  It is much easier to go work in your room for just a little while at a time instead of planning the whole day (and more than on at that) like I had to when I worked in Copperas Cove.  

Jackie came over to help me in my room and just to have someone to talk to while I was working.  We were not at school for 30 minutes when John called.  "I might have to take Jake to the ER."  

"What?!?  Why?  What do you mean might?"

"He got a hook stuck in his foot."

I hung up and Jackie and I headed out.  Another nice thing about being 2 minutes away :)

We got home and John was sitting outside with Jake.  Jake holds up his foot, "Look mom!  I got a hook in my toe!  That's silly!!" 

I swear....this boy!  If it isn't one thing it's another.  If it is going to happen, it will happen to Jake.  So to answer questions:

1.  No, he wasn't really fishing.

2.  Yes, John was watching him.

3.  No, he wasn't crying with this either.

4.  Jake had dumped out his tackle box prior to this and he has carpet in his room.  Even though we thought everything was picked up, apparently this hook was missed.  He got it just by walking in his room barefoot!

Jackie started working to get the hook out.  I called his doctor to see what to do.  I hated to go to the ER with all the other stuff going on if we didn't need to.  Turns out we just had to use wire cutters to clip one end of the hook and pull it out backwards.  John had just started that but it was relieving to hear someone else say to do that as well.  So, out came the hook and Jake ran off to play!  Oh, and no need for a tetanus shot since he just had his four year shots a couple months before.

Here is a picture of the hook in his toe....it's the only one John took but from the other side you could see how deep it was in there. 

THANK GOD FOR MY CHURCH FAMILY!

July 13, 2014~~~My 30th birthday!! (yes, I still get excited for my birthday)

What a glorious day!  It was Sunday, and the first Sunday since we had really known something was wrong-what a long week, huh?!?!  My parents came over and spent the morning with us, John went to work, then I took the boys to church.  Oh my gracious I could not imagine the emotion that would come over me.  We were singing praise and worship songs and I could not contain myself.  I mean, it was like a cry almost from the night before.  What in the world was wrong with me?!  We were singing HAPPY songs, my son was at home, other family was all healthy, I should be HAPPY!?!  I had to leave and go to the bathroom to get out of there.  I had looked forward to church all week because I'm just so excited and deeply enjoy going to church. I went back in and ladies I sit next to were hugging me and talking with me.  The songs went on and I could not think about them or sing.  What a way to be in church on my birthday!  We then greeted one another as we do every Sunday and my dear friend Rachel came over. After a quick happy birthday, she asked about Jake and I lost it again!!  I was a mess!  Poor Rachel was stuck with me, tried to make me feel better but by the time I was done crying the preacher was preaching and there was no going back for Rachel!  :)

Like I said before, I'm typically not a seriously emotional person so I was feeling ridiculous by this point!  I thought if I cried about it at night, in the privacy of my home, I would be okay.  I think I really just opened up the flood gates and the tears thought they have free reign!  At the end of the sermon, sweet Mrs. Betty took me up to pray with Jill.  What a sweet angel!  Jill was visiting and her husband was the guest preacher since ours was out for the month of July.  I had felt a connection with her but didn't want to be that weird, stalker-type person to go introduce myself.  Turns out she had the same feeling or connection towards me.  :)  God really knows what he is doing.

The next week was pretty uneventful as far as everything went with Jake and we liked that.  Bruising was hit or miss.  It seemed to be lightening up on its own if he did bruise so we felt good.  We were as "normal" as we could be at this point in the process. 

Next scheduled appointment with Dr. Kane would be July 23rd.

Here are the boys Sunday night practicing to be on American Ninja Warrior...

WHAT IF?

Saturday, July 12

We were now a week from when the bruising really started.  Jake's numbers were higher, not in the clear at all, but higher.  We felt 'okay' about what had gone on the past week.  It was such a whirlwind that I never had time to sit and process the emotions and the roller coaster that we had been on.  So Saturday it all hit me.  I had had little cries here and there, never lasted long, and honestly probably got more upset at those two poor children in the hospital and hearing what they were going through.  I sat at home and watched Jake.  He had minimal bruising....just what you would expect a four year old boy to have.  He was running and playing with his friends and his brother.  He had even started fighting with Jaden again.  So I sat there and tried to wrap my brain around what all had gone on the past week and why it appeared nothing was wrong with him, yet it was so serious.  

Then the 'what if' questions started popping in to my head, or the most horrible, possible situation that could have happened.  We try not to think this way and always tell our friends, 'oh that won't happen!' but we still think about it.  And with it being MY son, MY baby, MY snuggle bunny, it was hard to process.  Seeing him run and play made it better because I knew those things weren't going to happen or had not yet at least, but I'll admit I went through those thoughts.  

1.  What if he would have hit his head while on the roller coaster the Saturday before while we were in Austin?  Would that have caused severe bleeding on the brain?  Would he never be the same again?

2.  What if he would have fallen at the park the day we were waiting for the results?  He was on a scooter and bike the whole morning.

3.  What if we would have been in a car accident on the way to the hospital?  Or while in Austin the weekend before?  Would I still have my baby today? 

After talking with the doctors in the ER and realizing how low his platelet count was I couldn't help but think of these things....
These are just some of the things I thought about.  It was awful and I just cried.  I didn't want to think about them but as a human I did.  The thoughts didn't last long and I quickly thanked God for giving me the 'feeling' like something was wrong and contacting the doctor to begin with. How severe could this have been if I didn't act on my feelings?  I told God, "I know you are in control.  I know you know the outcome of this.  I know you will get me, John, Jaden, Jake and all our family through this." But the selfish part of me was still asking why.  Why my baby?  Why Jake?  Why our family?  Again, I know we should not question God but when you are put in a situation like this, it is hard not to.  I think it is part of the healing process to just ask God why and get it out of your system.  

So I sat out back and cried, and cried and cried.  And I didn't know if I was sad or mad or relieved or alone but I cried.  And I'm not a big crier but once I started, I just let myself cry and didn't try to stop it.  When I was done I don't think I could have cried anymore if I wanted to.  It felt good.  I felt my emotions were out of my system, I dealt with it, prayed about it and I felt good.