messiah1 messiah1

My Son, My Hero

My Son, My Hero

Tougher than most...

Well...after getting on the internet and looking up a few things we took our son Ethan to the doctor on Thursday due to some unusual nasty bruising he was getting all over his body. We were sent directly to the hospital for some blood work. We were told to stay put and wait. We were then sent back to the doctor where he informed us that he was pretty positive he didn't have leukemia but thought he may have what's called ITP (Immune Thrombocytopenic Purpura) and that we needed to get him up to Lutheran Hospital ASAP to see a hematologist, Dr. O'Brian. They would be waiting for us. Let me tell you what....when you can get in to see a specialist without an appointment like right now you know it's serious.

Once we got to Lutheran they took more blood and we found out that ITP is a bleeding disorder caused when your body's defense system mounts an attack and destroys healthy blood platelets thinking they are disease-causing agents. Well, your platelets maintain the integrity of the blood vessels and basically keep you from bleeding to death when you get an injury. A normal platelet count is 150,000 to 400, 000. Anything less than 10,000 is considered an emergency. His count at Huntington was 10,000. By the time we got to Lutheran it was 7,000.

He was admitted into the children's hospital and given an IVIG, which is an infusion of healthy plasma that lasted about six hours. Besides taking his blood four times (a lot of it I might add) and having to put in an IV five times (he pulled out two in his sleep, two veins blew, and they had to put the final IV in his foot which meant he could not get out of bed for about 24 hours); one of the side affects of the IVIG is nausea. So he spent most of the day Friday puking everything he ate or drank back up so they ended up hooking him up to fluids. By Friday night his platelet count was up to 30,000 and by Saturday morning 85,000. They let us come home then. Now....we wait....and see if his body is going to maintain a normal platelet count. He has to go in once a week for a blood test.

During this whole ordeal Ethan was so brave and seldom cried and never had to be held down while everyone poked and prodded him over and over. It was so heartbreaking for us to see him go thru that but we were so proud of him for being so brave. We were told he may never have an episode again or he may have to deal with this his whole life. We'll just have to wait and see. In the meantime he has to take it easy. No craziness. Like jumping around on the furniture or from one bed to the next or basically anything a rambunctious three year old boy loves to do because of the chance of injury, especially a head injury. If you have a three year old boy you know that is easier said than done.

Why post here...I need to vent. It's frustrating for me to have to see my child go through that. All the while they were sticking needles in him, to see him look over at me with his pleading eyes seeming to say "Daddy, they're hurting me." And I couldn't do anything because I know that they are helping him... :SNIFF!:  He's a trooper. He's my hero.
52,221 views 190 replies
Reply #151 Top
He's my buddy.
End of quote
Mine too my friend.
Reply #152 Top
He did excellent during the CT scan today.
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 :CONGRAT: Thinking of you guys. Hang in there.
Reply #153 Top
How ur managing to keep it together through the ups and downs is beyond me man.. I think about y'all daily and keep up the positive thoughts and prayers.

continued good luck my friend. :) 
Reply #154 Top
Any update?
Reply #155 Top
Any update?
End of quote


The CT scan didn't show anything abnormal...just waiting until Thursday for the trip to Riley. Our family doctor has told us we should ask, if they don't suggest, that they do a bone marrow test. That's the definitive test for Leukemia I guess. So...
Reply #156 Top
Wow, I can't even imagine what you are going though. I hope everything works out.
Reply #158 Top
Oh man...lets hope its not leukemia! (:(
Reply #159 Top
God Bless., all my prayers are with you and your family and that little guy....
Reply #161 Top
I pray for you, your son and all your family. Be strong and we trust in God. I wait for good news from today. God bless your son, my friend. I still praying for him.
Reply #162 Top
Messiah,
I'm sure I'm mirroring many things already mentioned here, but wanted to extend my most heart felt prayers for your son and your entire family. No child should be sick. Blessings to you all.

Ed
Reply #163 Top
Having a son of my own i can somewhat put myself into your feelings and i almost cry, not being able to do something to take away the pain and fix it must be so frustrating and also holding him back from what a kid like to do (go wild ;) ) ... i feel for you, be strong!
Reply #164 Top
Ok, so the doctor at Riley didn't feel there was any reason, at this point to suspect Luekemia. They did bloodwork and took a chest x-ray and let us go. The bloodwork showed his platelets at 37,000 which is a drop. The x-ray showed nothing abnormal. They want us to continue what we've been doing and see where he's at after 6 months. So...we still wait.


I want to thank everyone here for your continued support, not only in the forum but in personal messages sent as well. This truly is a great place and it feels like family/home. Don't know what I'd do without it. THANK YOU!
Reply #165 Top
messiah1, what else would you expect from a community of friends. Let us know what's going on. Your family and especially your son continue to be in my thoughts and prayers.  :) 
Reply #166 Top
Heres hoping continuing things the way you have been will be all the cure you need. And sooner rather than later  ;) 
Reply #168 Top

Well, after almost a year I wanted to let all the folks that posted here with their kind words an update on Ethan.  This past (almost) year has been pretty trying on my wife and I and the family in general.  When Ethans count was really low, he had terrible mood swings and there was never anything we could really do about them.  We just had to weather the storm so to speak.  His count would get better and we'd think, maybe..., but then we'd notice him bruising up real easy again and his count would bottom out.  There were some really scary times where the count was dangerously low that if he got a cut or something, without immediate medical attention, he could bleed to death.

There were so many times during the bad episodes that I found myself wishing I could have my old Ethan back.  I just wanted my buddy, the fun loving little fella who never yelled at me or said terrible things to me.  Mind you, these episodes usually only occured when the count was low.

I'm pleased to announce that the last two visits, with 2 months in between each, have found Ethans count to be up above 200,000!  All on his own.  He hasn't had an IVIG treatment since early April.  This last time the count had even climbed 10,000 above the previous check.  He's been acting much better, no drastic mood swings and playing like he used to.  I'm so happy and thankful that my Best Good Friend is his old self again.  You've no idea.

So, to everyone who had Ethan and us in their thoughts, THANK YOU!  I love this place and the people here. :grin:

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Reply #169 Top

You and yours are in our prayers. Ethan looks like a strong lad. Kids are resilient, with God on your side, he will be fine!  We will keep praying.   :'(

Reply #170 Top

:')  

Aw shit that's wonderful news Steve!

You did good dawg!

Reply #171 Top

Glad to hear it! Great news!

Reply #172 Top

That is just awesome news! So glad for you and yourn!

Reply #173 Top

:thumbsup:

This Doc just LOVES good news....thanks m1 for the update. I'm so happy for you and the family!

DrJ

Reply #174 Top

That is really great new messiah1, but you know what, I think I'll still remember your son, you and your family in my thoughts and prayers. 

I see no reason or need to stop a good thing. :sun:

Reply #175 Top

i think your as brave as your son,good luck to both of you.:thumbsup: