Sammy and ITP

It all started last year February 18 when Sammy woke up and cried and cried that his neck hurt.  Growing up my Mom had always warned me of meningitis that shows symptoms of a really stiff neck, petechiae, and fever.  So the first thing I did was check his body for petechiae.  He had the little red dots all over his body.  I was really torn as to whether I should take him to the doctor or just give him Motrin and send him to school.  I finally decided to take him in.  We dropped William at school and went straight to the doctor.  Sammy had a cold and cough leading up to this day.  We saw the nurse practitioner and she was instantly concerned.  She found purpura on him and blood blisters in his mouth.  She called the doctor in to check him out too and he confirmed we needed to go downstairs to the hospital for a blood test.  The results came back that his platelets were at 3 which is extremely low and we were sent to Cardinal Glennon Children's hospital and to the cancer center there to meet with the hematologist.  We were told to be prepared to be admitted.  Sam was in Indy at the time and immediately packed up to drive home.  Once at the center they discussed treatment options with us and redid the blood count.  They explained that Sammy had ITP (Idiopathic Thrombocytopenic Purpura).  A blood disorder caused by a reaction to a virus.  His body was confused and killing off the platelets mistakenly and that eventually the body would correct itself.  The main worry was that he might have internal bleeding or inter-cranial bleeding if he were to get injured.  The blood test they did came back as 15 so we were told we could go home without treatment and redo the blood work in the morning at the hospital near our home.  Yay! 

The next morning we took him in to get his blood work done believing that it would be higher and fine.  We left the hospital and went to pick up William at Grandmas house and go about our day.  While at Grandmas we got the call that it was back to 5 and we would be admitted to the hospital.  Thus began an entire week of Sammy in the hospital - below in gray are my exact notes and comments from that time...type in blue in added info from today...

Feb 20, 2009: We did treatment (we did IVIG through IV) last night. He was awake from midnight to four so I was awake until five. At 3am he threw up a ton of blood and clots. This morning his blood was at 7. Then just a moment ago he threw up a bunch of blood again. For now we aren't going anywhere until the bleeding stops and his levels come up (his nose keeps bleeding down his throat and we can't make it stop due to the low platelets). So if it doesn't rise we'll have to redo treatment tonight.  I forgot to mention on the first day they put a starter IV in his arm and blew the vein the first time.  It took a long time for the bruises on that hand to heal.   Also we were located on the cancer blood disorder floor at the children's hospital - definitely puts things in perspective for us!  Here is a photo of him in the hospital - if you could zoom in you would see the small red bruising on his face.

Feb 21, 2009:  No more vomiting blood since yesterday afternoon. He had another treatment last night and his levels are at 17 this morning. His spirits and appetite are better too. His hemoglobin is falling though so we have to stay another night and run the blood again tomorrow. So today we're just hanging out while they keep an eye on him. They want his level to be 30 to leave and his hemoglobin to come up since it's down to 8 and should be above 12. I'll keep you posted  (Note: I stayed nonstop with Sammy while there.  Sam watched William and would come and visit.  Sammy loved the little play room on the floor we were on and only wanted to eat the pizza they had.  We ordered pizza for breakfast even.)  
Well it went down hill around five. He had a nose bleed that wouldn't stop and bled for over half an hour gushing with clots. It was awful blood everywhere - him crying.  So they had to call the ENT and stuff his nose. Right before that he threw up again. This stuffing of the nose was incredibly traumatic for both of us.  It involved the ENT sucking the huge clots out of his nose and then packing some cotton stuff WAY up into his head while I and 3 other nurses held him down as he screamed in terror.  It was so hard to keep looking at him as he was so frightened and tell him that all would be okay.  The second it was done I looked away and cried.  But I did not let him see Mommy upset so he would know it was ok.  So let's just say this evening was really traumatic. It really shook me. His IV came out from all of the holding him down so we'll have to do that again in the morning. We redid the blood and it's back to 8.5. I'm pissed! So looks like a steroid treatment tomorrow and no going home. Who knows when we'll actually get home. I'm beat and haven't been getting food and water as I should be so Sam is here to stay the night tonight since it was so rough this evening. So much for on the mend.  He was very bruised after all this...

Sammy at the hospital  (the guy who was drawing blood brought him a TON of stickers since he had been poked so many times.  Here he is with all of them!)

Feb 23: He was better today but levels are still below 20 so we will repeat the blood work in the morning. At least he is acting normal and no more traumatic events and no treatments today.  Back down to 8. We start steroids today. No going home in sight for a few days.   He's doing well today. The packing of his nose definitely helped to stop the bleeding but that only holds in his nose for 2-5 days and today is day 2 so I hope it doesn't dissolve and start bleeding again. The steroids we started today should help him to not bleed as much. The steroids take 1 to 2 days to start to work and then when we wean off of them we may see a drop in his platelets again. If that happens there is one more treatment we could do. All of these treatment options are just temporary fixes until his body (mainly spleen and liver) fix themselves and stop killing off his platelets. We've learned that it can be a long road and will involve numerous blood tests over the next 6 months until he returns to normal. he's covered in bruises and petachie from all of this.

But considering we are on the cancer / blood disorder floor we by no means have it as rough as many of the children on this floor. His worst risk is internal bleeding or bleeding in his brain which is rare as long as he doesn't injure himself. Otherwise the risks are bleeding that won't stop and bruising. So we can be thankful that even though it's tough to deal with that it will eventually be under control and he will be ok.

So there you have it. Thanks again for all the thoughts and prayers. I've been doing well. Saturday was by far the worse ever but yesterday and today have been good except for the fact that his blood levels still suck.

Feb 24: So his numbers were 15 this morning and 19 this evening. They gave us the option of going home just a little while ago and I opted to stay the night and see what the numbers are in the morning. I'd rather be safe than sorry. So looks like we will probably be going home tomorrow morning. Yay! Now just pray they stay up and don't drop once the steroids are weaned or we may be back.  (In hindsight we should have just gone home... but lesson learned!)

Feb 25:  Ash Wednesday 2009 Sammy and I went to mass at the hospital and were released later that afternoon. 

Feb 26: His numbers were 24 yesterday morning. We go tomorrow for another blood test. He did have a nose bleed last night so we were up awhile last night trying to get it to stop. Hopefully the steroids will last until his body recovers on it's own.

Feb 27: His numbers were at 41 this morning so we are headed in the right direction. We begin to reduce the steroid amount today so I hope we don't see a decline in his numbers. We'll do bloodwork again on Thursday.

March 5: Got blood work done again today. His count is back down to 30. The doctor still wants to reduce the steroids a little bit and we'll do blood work again next. He said as long as we keep it above 20 we're good (good as in no hospital) and I have to keep watching for petechiae. Although it's still extremely low and he said that the steroids are just barely keeping him where he needs to be but of course Monday is 2 weeks on the steroids so we have to start to wean him off of them because of the bad long term effects.

March 10: We'll find out tomorrow. I'm taking him for bloodwork then. He had a nosebleed this morning that took me 45 minutes to get it to stop. That means holding it tight for 45 minutes plus going through tons of tissue. So that makes me think his numbers are still going down. Plus he's starting to look pale. Still no petechiae so that is a good thing. I suppose that means we're still above 20.

March 11: Ugh! Sammy was down to 11 today. So they are bumping the steroids up to full dose and we redo bloodwork on Friday to see where we are at. Luckily no hospital today. We'll give the steroids one more week and then if they aren't working we'll have to do the other treatment. This is such a pain in the butt! They did say if he has any more prolonged bleeding then to call them.

March 13: Up to an 18 today with the increased steroids. His normal doctor is out this week so they said to keep him on the high dose and retest on Monday. Poor Sammy and his arms! He only has two and we did the right on Wed and the left today. He won't be happy to hear he has to go again so soon. So we'll talk to his normal doctor on Monday about where to go from here. I won't keep him on the high dose of steroid past next week. It has too many bad side effects.

March 18: He was at 36 on Monday so they are keeping him at the high dose of steroids for now. We'll recheck on Monday. They were concerned that maybe they weaned too quickly last time so they will do it slower this time to see if his numbers drop again. If they do then we'll look at other options.

He had 2 nosebleeds Saturday, 1 on Sunday and 1 yesterday although the one yesterday only took 5 to 10 minutes to get to stop so that is a good sign. We have yet to see his numbers go above 41 so I'm hoping that continuing this high dose for a week will make him have a really high count.

On the bad side - he is gaining weight - his cheeks are so chubby and his belly is so big! He also is more prone to infection since the steroids are supressing his immune system and he doesn't act like the same kid on the steroids and we just want our Sammy back.

So it's just continues on.....

Sammy at the height of the steriods:

March 31: Last week he was up to 86 so they decided to wean him down. He now is only taking 2 doses a day and it's much less than before.

Today his blood came back at 36. So they said to stay on the same dose and check next week.

will this ever end????

April 7: We just got the blood work back today and Sammy’s level was at 344!  This is a huge surge from 36 last week and the normal range is 150-400.  He is normal-finally!  It could just be the steroids finally kicking in but it is the boost we needed and hopefully means he won’t need any more treatment.  We are weaning him to one dose of steroids a day with hopes of him being completely off it by next week.

God is good!!!! Hallelujah!  Praise the Lord – we are so ever thankful!  Thank you for all the continued prayers and support!

Now I don't remember if we did anymore blood tests after that but if so there weren't very many.  And then we moved and we were not told to get it checked again.  We were told he should be fine.

Fast forward to Ash Wednesday this year February 18th - Sammy is getting ready for bed and I notice petechiae all over him.  It was like a punch in the stomach.  I couldn't imagine going through it again let alone we are still paying off that hospital stay.  So the next day I took him to the pediatrician who confirmed it was most likely ITP again and sent us for blood work.  It came back at 11 and we were sent to the children's hospital all over again.  It was just like last year with him having a cold leading up to this and then it happening right at lent like last year.  So odd!  This doctor though couldn't believe that no one was following him and that we had not done any blood work since we moved here.  He suggested we do the WinRho treatment but we decided to wait the weekend and see.  The next day he was up to 17 and then a few days after that he was back at 12.  Then he went to 24 and then 48.  We have done zero treatment and have let his body do it's thing.  From there it went to 98 all within about a week.  Now this week it was back down to 64.  The hematologist here believes we should be followed for at least a year and he isn't sure yet if this is a recurrence or chronic.  So we continue to follow it.  Poor Sammy hates having his arm stuck but he's a trooper about it.  Mom and Dad have both gone with him and had ours done to show that everyone has to do it.  Let's hope that maybe his numbers are high again by Easter like last year.

Here's a recent photo of my sweet boy