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.

JULY 10 & 11

Thursday, July 10, 204     

We left the ER and drove to my parents house to get Jaden.  We were ready to just be home.  Jaden had missed us and we had missed him!  Jake fell asleep on the way to my parents and we thought that would help his headache.  We got out, saw my parents for a little while, got all Jaden's stuff loaded up and headed home.  The ride was uneventful which was great, but as soon as we got home, Jake got sick.  He has never thrown up in his life so he had no clue what to do or what was going on.  We got him and his room cleaned up and I laid down with him in my bed.  I was exhausted, he was tired and not feeling well and this would give John and Jaden time together.  Jake and I slept about 2 hours and woke up around 6 pm.  He was burning up!!  I took his temperature and it was 102.  At this point, I called the pager number for the doctor and waited for a response.  The same doctor we had seen in the hospital called back and reassured me that all were normal side effects of the treatment and unfortunately he just got all three of them.  
     It still is weird to me how NOTHING happened while in the hospital but the moment we stepped out everything that could happen, did.  Friday night was long, we gave Jake Tylenol every 2 hours but it didn't do much.  He was so hot all night, cried about his head and I felt awful.  The next morning, Jake, Jaden and myself all slept in.  It is amazing how nice your bed feels after not being in it.  John went back to work and was gone when we got up. When Jake woke up, I had him walk to the living room.  He had not put weight on his legs in a while since we just carried him around and he moved very slowly.  He would turn very slow, walk very slow, and move his body even slower.  
    I called a friend to take Jaden to do activities at Kid's Day down at the soccer fields.  I knew I was too tired to be a nice person and I was emotionally drained by this point.  The sleep definitely helped but I still needed time to recover.  We had a few people stop by and see Jake.  He really enjoyed the visits and presents.  It helped the days go by more quickly and I appreciated everyone that came by!  When John got home, we took Jake to the clinic here in town to get his blood drawn again.....so that will be four days of being poked with a needle in the last five days.  :(  
     I told the doctor about our horrible experience at the hospital and that I would not go back without John there to at least help.  We were able to go to the clinic to have it done then it was sent to the hospital so they could get the results faster.  So, after a short time, we learned that Jake's platelet count was 39!  I was so happy to hear it had gone up even more!  Relived and hopeful are two words that come to mind when I think about how I felt.  

ER VISIT

Picking up from the last post, we headed out of the hospital and had just signed discharge papers about 10 minutes ago.  We drive away and within 5 minutes Jake is crunched over in his seat, crying, saying his head hurts and that he can't breathe because of the pain.  John and I are just looking at each other as I'm driving like deer in the headlights!  What is this???  The biggest thing the doctor said to watch for was headache as it could be a sign of bleeding.  While the doctor was going over that part, we both knew it was far fetched....but back to real time and he's screaming about his head.  For those that don't know Jake, he doesn't cry because of painful things that most children or adults would cry about.  He never once shed a tear while getting poked with needles, he has broken bones before and never cried, doesn't cry when he has been spanked, I mean NOTHING.  He cries, but not because of physical pain.  So John and I were a little freaked out to say the least.
     My grandmother lives pretty close to the hospital and we were not even to her house when all this was going on, so we decided to drive there and get Jake out to see what was going on.  We arrived and I got Jake out of the car.  John took him in and I called the number they had just given us as we left.  In the meantime, Jake was whaling that he was in pain and his head hurt.  I could not believe he was really crying this hard over it.  So, we get back in the car as I'm waiting on the nurse.  She answers and hears him in the background and could not believe it either.  She told us to come back to the hospital but to go to the back to the ER and let them know he was just discharged.  Apparently he can't go back up to the floor since he was discharge, and we understood that, but this had literally been 15 minutes!
     We get to the ER quickly and I have to carry Jake in.  He is laying over my shoulder, holding his head, moaning and not talking.  I knew something was wrong.  We walk in and I told them he was just discharged and go through the whole thing.  A nurse gets us right back and when she sees how low his platelets are, they bypass vitals and go to a room.  Within seconds there were more than five doctors/nurses in the room with us.  Hooking Jake up to machines as he just laid there.  This was the most scared I had been during the past week.  Everything was happening so fast, Jake was not himself at all and as fantastic as the hospital and doctors were, I was sooooo ready to be back home with both boys!  We told the doctors that literally 15 minutes prior, Jake was dancing with the nurses going down the elevator.  They looked at me like I had 3 heads!! The ER doctor ordered a CT and we went right up for that.  By this point, Jake was more with it and not crying.  About 5 minutes later they had the results, went over them with the doctor from the floor we were just on and both confirmed there was no bleeding.  Praise God!!  
     The ER doctor said it was just a bad headache and that he most likely had never had one before and didn't realize the pain.  He also said the headaches are very severe with the IVIG treatments and that Jake could also have fever and nausea.  We knew this but he had been a model patient up until this point.  While we were getting another stack of discharge papers from the ER, he told us how lucky we were.  "We don't see many kids come in with such low numbers without something being wrong...."  Not word for word, but basically what he said.  The whole time we were in the hospital, they don't talk about 'what ifs' or anything else; it is just here is your child, these are the facts we know, this is what we are going to do.  ER doctors are different and it really put it in to perspective how close we were to a very, very bad situation.

HOSPITAL STAY

July 9, 2014

   John, Jake and myself left to get lunch and wait for the phone call to report to the hospital.  While eating, I got the call, "Hi, this is, as your son says, the bald nurse..."  :)
    Our room was ready and we headed over to McLane Children's Hospital in Temple.  I was more scared than anything...we still didn't know a lot about what was going on.  I just knew that Jake was sick, he needed to raise his platelet level and this was the treatment.  So, around 1 pm we were settled in the room, Jake found out how to work the remote to the tv and was able to order dinner.  He also thought he had a diving board in his room.....aka hospital tray table.  His poor nurse about had a heart attack when he climbed on it to jump to his bed.  She just said, "He's going to be my active one I can tell.  Most do not have energy on this floor."  I asked why Jake was on that floor and what other kids were there. She told me it was a step down from ICU so they didn't need to be monitored constantly like ICU and that all the kids on that floor had cancer or a chronic blood disorder.  In my mind I still believed this was just a quick overnight stay and we were going to jump start his platelets, get them back into sync with things....wishful thinking looking back now, but I couldn't tell myself he was really sick or I would not have been able to hold it together.  We walked around and found the play room.  What a saving grace!!!  It had even more toys and things to do than the clinic one.  Jake's IV was still in his hand from this morning even though we haven't had to touch it since.  Finally around 4 pm the nurse told us they received the medicine from the pharmacy.  The IVIG treatment should take around 8-12 hours as it is a slow IV drip.  She told us we would start around 5 pm. 
    So, five o'clock comes and the visitors also start showing up.  John and I still have not had time to sit and really think about what all was going on at this point.  By about 5:30 or 6 Jake was hooked up to the IV and ready to begin.  The thing was, he could not be up, moving around or anything during this!  At this point we were thankful it took so long because we knew he would be going to bed soon and that would help.  It is not easy keeping his still or confined.  His brother came to see him with my parents as well as my grandma. 
During the first 15 minutes, a nurse had to stay right with Jake and monitor his temp, blood pressure and heart rate.  She did and everything was okay.  She moved the medicine up some and watched for another 15 minutes.  At the end of this time, when she checked his blood pressure it had dropped.  It was around 70/40.  I honestly have no clue what it should have been but this was a drop from what it was.  She got another nurse to check him, monitor him and timed another 15 minutes.  After this time, he was good and they were able to raise his dosage again.  They raised it from 5, to 10, to 20, to 30 and I believe 40 was the max.  He was able to go to the max and stayed there.  All the time he was coherent, watching movies, drawing, speaking to us; just normal things for him.  
 Then Miss Jackie came and brought bags of fun stuff to keep Jake entertained.  Jackie was my teaching partner the past 3 years and I was so excited to see her!  I had her take me to grab dinner for John and myself and I remember it being so weird to walk out of that hospital and 'normal' things still going on.  
The rest of the night was pretty good and Jake actually finished the treatments in about four and a half hours!!  I was shocked at how fast it went.  They unplugged him and were able to take him off all monitors so we could get a goodnight's sleep by around midnight.  Jake had been out for hours by this time, but it was good for me. 
I woke up about an hour later to a poor child throwing up in the room next to us.  It was awful and I just prayed for her.  She had cancer and was getting treatment, so this was a side effect of it.  I prayed for her strength, I prayed for her parents, I prayed it would just pass quickly!!  Broke my heart to hear it but I just thanked God over and over that was not my child.  I hope that doesn't sound harsh but for the first time I was happy Jake "just had low platelets".  I saw it could be much, much worse!  Then around 6 am I woke to the child on the other side of us screaming they didn't want to take any more medicine.  Another heart wrenching sound I will never forget. It still makes me tear up weeks later just thinking about it.  I still pray for these two little kids even though I didn't get to meet them.  By this point, the hardest part of being in the hospital was that night and hearing the kids on both sides of Jake's room.  It was a nightmare and I can't imagine those poor parents as well. 
      Jake woke up happy, had his tv right in front of him and got breakfast served to him in bed.  He was loving this! The nurse then came in and took Jake's blood around 8:30.  We heard back later that his count was at 25 (or 25,000) and the doctors were discussing what to do with him.  They had only gone up by 9 from the previous day and with the IVIG treatments we were told they would "jump up within 24 hours".  It had only been about 10 hours so we didn't know what to think.  We had met with the doctor at the hospital off and on all morning and around noon we were told that he would be discharged and that we would do more blood work the next day or Monday with our PCP.  He was at a number they felt safe sending him home, they didn't think he would have bleeding in his brain, and we actually still had time in that 24 hour window for his numbers to raise.  John and I were okay with this....really what else could we do.  We got all packed up and headed out.  Jake's nurses and all the other nurses on the floor were waving by to him and just smiling at him as he was dancing to get on the elevator.  We stopped by the gift shop on the way out since we told Jake he could get a toy when everything was done.  We stopped to take pictures of Jake outside and we were sooooo happy he was done!  No more hospital, his body would just take over and do the rest, or so we thought.  We had been discharged a total of about 15 minutes and everything changed!

Here is Jake with his brother, Jaden in the hospital.

Here we are getting ready for bed.  He made me promise to sleep by him all night :)

Jake was such a good patient!

MEETING THE SPECIALIST

     We woke up early, well summer time early at least, so I could call the specialist's office.  I called right before 7:45 which was the time I was given.  I wasn't thinking anyone would answer since it was early, but a lady did. "Pediatric oncology and blood disorders....(the rest was a blur)"  What in the world?!?  I knew I had the wrong number...why was I calling a cancer doctor??  See where our minds go.
     I said, "Yes, ma'am, I might have the wrong number but I was supposed to call and get my son in sometime this morning.  I'm from Lampasas and our doctor called a spoke to someone last night..." Her response, "Oh yes, Jake.  I got an email from the doctor here last night to get him in ASAP."  
     Mixed emotions came to me again!  I held it together but I'm thinking why the hurry, he's just fine-go look at him.  Then I'm thinking, I've never been to a doctor in such a hurry-this must be urgent.
     Skip to the end, we were to be there at 9 am in Temple.  We grabbed our stuff quickly as we still had to drop Jaden off at my parents and drive the hour.  They knew we might be late and just said to be careful.  We get to our exit and "closed".  Really??!?  Go to the next one, turn around, find it through the back roads and finally arrive at 9:02.  Pretty good if you ask me.  It was a quiet drive, Jake was good, my mind was racing, John just gets quiet.  We jump out of the car, go in and get on the elevator.  All the time we have our fake happy voices trying to make it as happy as we can for Jake but in reality, no parent ever wants to take their child to the doctor.  Well, you know what I mean, we do to get better, but we wish they weren't sick at all.  We get off the elevator and there it is again "Pediatric Oncology and Blood Disorders" real big, couldn't miss it, yep, we were there!  We see a 'fun' little door for Jake to go through and make the most of it.  As we check in, there is all the paperwork for me to fill out.  We were the only ones in the waiting room at this time.   Then a little boy comes out, smiling and all, but my eyes go to the permanent IV that is on his head.  I tried not to look but this is overwhelming to someone that has never been sick, only in the hospital to give birth, then even then, released within 24 hours both times.  The parents were happy, smiling, the child is not phased by the stint on his head, but I hurt for them.  Why is that poor child even here?!?!  
     Sorry, off topic, but the child really opened my eyes.  So, we are waiting then here comes a bald, male nurse, "JAKE!"  Jake jumps up and runs back.  Another male nurse was there to do vitals and all with them.  We go to a room and Jake jumps on up on the bed.  Soon after, we meet Dr. Kane.  Wonderful, brilliant man!  We spoke with us for a little bit about basic things; our home life, what Jake liked to do, siblings, school, etc.  Then he said we would do blood work and then talk.  Perfect, we will now be three sticks in three days.  After yesterday, there was no way I could stay.  Some might say, "How can you leave your child as they are poked?"  Let's just say it is better for me to be gone and out of the room for everyone's sake!  Plus, he is with his dad!  So, I go to the lobby, call my dad and give him the update so far.  I went back in and they had the IV in Jake's hand.  He never cried and said the nurse was very good.  We then have to wait a little while for the results.  I took Jake to the game room where they had everything in the world for kids to play with.  It was wonderful and got Jake's mind off of things by playing.  We then met with Dr. Kane again after the results came in.  Jake was at a 16.  These numbers are really in thousands but it seems doctors just leave off the thousands while talking.  So, in reality he was at 16,000 platelet count when he should be between 150,000-400,000.  He looked at us and just said, "Jake is a sick little boy and we are here to help him.  This is treatable, he can get better.  It will take time..." then went on with all the statistics.  We went over options and the best one at the time was for Jake to get IVIG treatments.  Dr. Kane called over to the hospital (we were next door in the specialty clinic) and told us he would let us know when the room was ready.     At this point, we had gone over every number that they could get from Jake's blood.  Everything was perfect, everything was high, he looked completely normal and healthy on paper.  Except his platelet level.  How could one little number cause so much anxiety, grief, pain, emotion in someone???  We knew his spleen and kidneys were functioning well.  His body was producing blood cells and platelets.  The problem came in that his body was also destroying his own platelets.  You think, oh well, what does that mean?  Basically, if he has no platelets (which he pretty much did not) then there is no clotting.  So, that mosquito bite that was bleeding last Saturday, this is why.  The bruising....well he had spent 4-6 hours jumping into a swimming pool and the impact of the water had caused his body to bruise and bleed on the inside.  That nosebleed that should not happen to a normal 4 year old, this is why.  After all the discussion, Jake has ITP (Idiopathic thrombocytopenic purpura).  We waited a little while longer in the clinic, then we were told we could leave for lunch and they would call when the room was ready.  So, we did, IV still in Jake's hand and all....

  No smile, but still in good spirits!

THE FUN WAITING GAME

   We are now at Tuesday, July 8th.  It hit me the night before that something might actually be wrong with my child.  Up until this point, I was so naive about the whole thing and just thought, "Oh he has some bruises.  No big deal."  I didn't let my mind go to the bad things that it might actually be or what we might have to go through as a family.  I have never had to really go through anything too difficult in my life or anything that 'tested the waters' so I didn't think I would with this either.  And to be completely honest, I wasn't sure if God even thought I was strong enough to.  Before this, I didn't know it all, but I knew a lot ;)  At this point, I can tell you I know nothing, and my heart and mind are so much more open to learning/seeing new things.  On that note, I knew I would get a call at 9....nope, nothing.  This had been 24 hours which I was sure that the results would be back by now.  10 o'clock rolls around and I pack the boys up to go to the park.  We meet a group of other moms with their kids up there every Tuesday so I kept my phone with me.  Still nothing.  We try to not really talk about it or why I haven't received a call yet, but we are all wondering why without saying it.  11 o'clock comes and still no call.  I finally text the doctor around noon.  The tests that have come back so far are good, just waiting on a some more. This was great news right?!?  My mass text messages continue to those that I have asked to pray for us over this past weekend.  In my mind I'm still thinking everything will be good and we will forget about this in a couple of months.  We went home, took a nap and still no call from the doctor.  At this point, my gut told me something wasn't right.  I prayed to God that he already knew the results and that we would be fine, he would be with us through this and told myself I was good.  (In hindsight this was a ridiculous assumption!!)  Around 3 I got a call.  The doctor told me, "Jake's platelet levels came back low."  I'm thinking "Okay, low but still okay.."  I asked how low and she said, "6".  Still not able to see the big picture, I asked what they should be.  "150-400".  This is when my heart sank for the second time in pretty much my whole life!  Yes, the first was only 3 days prior.
   The doctor suggested we go to the hospital here in town to re-do the blood work today.  She was putting in a referral to the hematologist and we would get a call from one of two children's hospitals first thing in the morning since they were already closed or almost closed for the day.  Everything else was pretty much a blur even though I was saying okay.  I had only really been to her once before all of this with the boys but I trusted her.  How else would we get to the specialist and I just trusted that God was sending us to the right doctors.  John had been at work early and was on his way home.  I called and told him the news.  It had not hit me, as I was in "let's get this done" mode.  I called a friend to watch Jaden for me while I took Jake to the hospital.  Dropped Jaden off, took Jake up there and 25 minutes later we get to go to the lab (gotta love small town hospitals!)  NOT!!  As we walked in to the lab, you can tell they are not very busy or in any hurry to get anything done.  Very nice women but geez!!!  So this lady gets all her stuff together, tries to talk to Jake about EVERY LITTLE THING!  "What's this?" and "What does this do?" to see if he knows.  I finally say to her, "He knows what things are, he's 4 and just had this done yesterday, and if you don't hurry up I will be passed out in about 2 seconds!"  By the time she goes to poke him we had been at the hospital/lab for about 45 minutes.  Remember, I literally pass out with needles and just seeing them.  I'm fanning myself, trying to hold Jake, and not listen to her commentary about everything.  I finally text John to see if he is almost in town and can just come do this.  It is too much for me.  Plus, I'm trying to not think about the reason that we are having to do this again anyways.  The lady has scared Jake enough by this point that he won't hold his arm out for her (but do we blame him???).  She calls in reinforcement and she finally sticks him and he's saying very loudly, "OUCH, OUCH OUCH!"  but not crying.  I am thinking, this is not how he acted yesterday according to John.  I look over thinking this is taking forever and you can see the needle in his arm NEXT TO THE VEIN!  This was about it for me!  I was fading fast.  The other lady that was called in finally just takes the needle from her, pulls it out some but not out of his skin, and puts it in the vein.  5 seconds later we are done.  Literally right at that moment, John walks in.  Perfect timing :)
   You can see this was a LONG day!  I text the doctor to let her know we were done and that the children's hospital had called to set up an appointment for Friday at 2.  She text me back that she was one the phone with the dr at Scott and White and would call me when she was done.  I felt it was a little odd but wasn't sure what was up.  After 5 that evening, the doctor calls back and says we are to be ready to go to the hospital the next morning.  The doctor at Scott and White said we needed to go in the next morning and start IVIG treatments, be ready to stay the night, but we don't know what time until in the morning since the office is closed.  The hospital is a good hour away, plus we have our other child we have to drop off in the morning, so we knew it would be a long night.  After everything settled some, text were sent out, I spoke to my parents on the phone and I was just sitting outside....I lost it!  What in the world had happened today, or really just after I woke up from our nap?!?!  Was this a dream?  Why is this happening?  and even more What do we do about it?!?!  I was upset, angry, mad, sad, confused,  and scared.  I just prayed and prayed!  Jake prayed that night and Jaden prayed for his brother to get well.  Even after all this, in my mind, I felt Jake would be well again with 'good numbers' by the end of the week.

THE FIRST BLOOD DRAW

     After I saw all the bruises on Jake's body, I called his doctor (yes at night) and told her I had no clue what was going on, I didn't feel good about what I saw and that something was off.  She looked at him the next day at church and ordered blood work to be done Monday morning.  Monday morning, we all four go to the clinic and being a small town and our luck, we were "The first 'kid' patient in the new hospital!"  Not what we wanted to be greeted with; I mean they were nice and all but I didn't want to be there at all!!  As I'm walking in with Jake and trying to prepare myself more than him since I hate needles, his nose starts to bleed.  We were able to stop the bleeding but this was not a good sign.  They took us back to a room and we met with the doctor, John took Jake back to get blood work done, and we left.  We were told that it would be first thing the next morning when we heard the results.
**Side note, I'm NO doctor but we have realized through this whole thing that if you want results quickly, do not go to a clinic!!!  Go to a hospital to get it done!!
We went on about our day as normal as we could be.  The worst thing is not knowing....everyone was concerned and asking questions and all I could say was "I don't know."

     Oh, and how did Jake do with the needles?  Excellent!!!  He was a champ, never cried, didn't move and watched all the blood (4 vials) come out of his arm!!

We allowed Jake to take his own doctor's kit with him since we didn't know how traumatizing the blood work would be for him.  :) 

THE BRUISING STARTS

First blog....so much to get out there that I'm not really sure where to start.  Here goes, up until July 4th, 2014, we were as "normal" that you could be....or I should say traditional since it isn't too "normal" anymore.  John and I had been married almost 9 years, bought a house, he has a good job with HEB (grocery store) and I'm a fourth grade teacher.  We have two sons, Jaden, 6, and Jake, 4.  We were spending the evening with friends celebrating the Fourth of July.  When we got home it was late and we quickly undressed both boys and changed them for bed.  I noticed lots of little red dots on Jake's stomach, chest, and back.  I called John in to see and he said, "Oh I bet it's from jumping on the tubes in the water."  I shrugged it off and we all went to bed.  The next morning, they were still there.  I knew it wasn't normal and because of an auto-immune disorder that just came to light with myself in the past year, I knew he had petechiae (the little red dots).  I had NO clue what it meant and we went on about our day.  I took the boys down to Austin for the day since John had to work and we visited the aquarium and Austin Park and Pizza.  We had never been to either so they were pretty excited all day.  On the way back home we stopped by my parents workplace as we always do when we leave Austin.  I sat in the parking lot and used 5 band-aides to stop the bleeding from a TINY spot that was a mosquito bite before.  It just wouldn't stop bleeding!  When we went in, I told my mom that I felt like something was wrong; with the petechiae, bleeding that wouldn't stop from such a small spot and he also had deep bruises on his legs.  I had noticed them but being with Jake 24/7, I couldn't see how bad they had progressed.  My parents both told me how deep and dark they looked so I decided to start taking pictures of him so I could compare from day to day.  He had a couple bruises before the 4th of July but nothing alarming; I mean he is a very active four year old boy.  The boys and I finally arrive home around 8 pm Saturday.  I took Jake's shirt off of him so he could jump in the shower and my heart sank.  He looked awful!  I mean, he was running around, laughing, fighting with his brother, yelling (all typical things for him) but his body looked like he had been in car wreck!  He had bruises all up and down his spine, arms, elbows, stomach, head, even under his toe nails were turning purple!  But his legs were the worst....my poor baby was black/blue/purple/green!