Platelet Count #10

Finally!  We are in the "normal" range for Collier's platelet count.  257,000 baby!  I am so happy and relieved.  We have to go back just once more, in 6 mths, to make sure that his ITP isn't one of the 10% cases that reoccurs.  I'm planning on us being in the 90% that stays ITP free forever!

Platelet Count #9

Lucky #9!!  This mans' platelet count is WAY up to 93,000!!!  Yippee!!  We even got the go ahead to get his 6 month vaccines, which we took care of yesterday.  (Just in time for Mother's Day Out.)  Our hematologist wants to see Collier back in 2 months with the expectation that his counts will be in the "normal" range.  After that, we will go back in 6 mths for a check-up.  If all is well, we will not have to go back ever!! The doctor says that his ITP doesn't put him at any extra risk for contacting anything else.  In 10% of cases ITP reoccurs within 6 months of being back in the normal range, but hopefully we will be in the 90% that stays ITP free!  Words can not describe how happy we are to be almost through with this journey.

Platelet Count #8

I *think* we turned a corner today!!  Little man's count was up to 49,000!!!  This is a huge improvement from the 8,000 we have been working with for the past few months.  The doctor is hopeful that this is the beginning of the recovery stage for Collier's ITP.  (He did say that it could also be due to the fact Collier is getting over an illness... he's been stuffy, stuffy for the past week or so.  It could be the body's way of boosting platelets to get him over the illness hump, then when he's illness free the platelts could drop again.)  But, I'm hopeful that it is really recovery from ITP!  That's what I'm going with anyways.

The plan is still to hold off on Collier's 6 month shots (even though he's 7.5 mths now) and to go back in 4 weeks for another count.  If all looks good then, Collier will be cleared to begin Mother's Day Out and our appointments could be stretched to every 2 months!  Fingers crossed!!

Platelet Count #7

Here we are 3 months into our diagnosis and, unfortunately, not much has changed except for our status in the ITP world.  We graduated from "acute" ITP (low platelets for 0-3 months) to "persistent" ITP  (low platelets for 3-9 months).  We are at 8,000 this week.  No bone marrow testing was brought up today, which is fine by me.  Instead, our doctor said that as Collier gets older/more active our watchful waiting approach might turn into a more aggressive treatment plan.  Time will tell.  As for now, he will see us every 4 weeks (rather than every 2) with instructions to call immediately if any bleeding begins.  Done!   

Platelet Count #6

The above image was taken last week.  This is petechiae bottom from having Collier in the baby bjorn.  Looks bad, but doesn't bother him in the least!  The baby bjorn will be used less and less in the future.

On to the good news!!  This week Collier's count is at 9,000.  While this isn't a huge increase, I am so thankful to be in the "+" category for once.  Maybe this means that things are taking a turn for the better??

Perspective

My across the street neighbors son, who is two, has had leukemia for about a year now. (He is now in the remission phase.) Today I got to talk to her about Collier's case. She said that when they started her son's platelet count was at 50! What the what?!?! I am now totally thankful for our 7,000! (Again, normal is between 150,000-450,000). Her sons' red blood count was unbelievably low also. Perspective is a good thing!

Thankful for...

In regards to Collier... while I'm taking his ITP a little hard, there is much to be thankful for.

1. That his body knew something was wrong and showed signs of petechiae which prompted me to take him to the doctor in the first place.  I tried to take a picture of his petechiae with my iPhone... it's above.

2. Something I am continuously grateful for is that it's not cancer... and that his white blood count has continued to be in the normal range.

3. That we live in a city with a fabulous Children's Hospital and for our team of highly qualified hematologists that are completely on top of our case.

4. For Collier's age.  Many times when he gets his blood drawn he is happy and smiley through the whole process.  That Collier is not yet mobile or very active... less threat of head injury!  (If it were Charlie, I can see that this would be a problem.)

5. That I decided to stay home this year and that Collier is not in a daycare setting or under the supervision of anyone but me.  I don't have to deal with the "what if something happened and I wasn't there" aspect or decision making. 

6. For my group of college girlfriends.  All of us are, in some way, in professions that deal with children with problems.  They "get" that this is a big deal and see it for face value.  I so appreciate them and their support.

So, whenever I am feeling down that my 5 1/2 month old's bone marrow isn't functioning properly I will come back and refer to this list and find peace in the thankfulness of all of it.      

Platelet Count #5

Little man's count is down to 7,000 this week.  (Enter sad momma face here.)  So, new plan... if it's still low in a couple of weeks the doctor says we might need to take a look at his bone marrow just to make sure all is looking ok.  Good news is that we got the go ahead to go on our pre-planned beach trip next week.  She encouraged us to already map out our route to the hospital and take our count with us just in case.  Will do doc!  Collier's 6 month shots are coming up.  Our hematologist would like to see the platelet count be between 25,000-50,000 before going ahead with those.  So, a couple more weeks of waiting, watching, praying and a little bit of beach time in between!

Platelet Count #4

Stuck at 8,000. No bueno. We saw our hematologist yesterday and she was even more reassured that this isn't cancer. (Truthfully, I didn't realize that cancer was still on the table!) We are continuing with the watchful waiting approach and are being stretched to every other week appointments rather than weekly. All in all a good appointment! However, Collier's finger bled SO much after his prick. It took 3 band aids and he was still leaving blood streaks places. No platelets equal no clotting. Poor little guy!

Platelet Count #3

Down to 8,000 this week.  We are continuing on the same course if watchful waiting and hoping that the platelets increase on their own.  We'll be back at Children's next Tuesday and will talk to the doctor then.

ITP

Guess who has it?

Guess what it stands for? Immune Thrombocytopenic Purpura (sounds made up, huh?) 

Guess what it is? Low platelet count for an unknown reason (could be caused from Collier's vaccines that he got on March 28 or triggered from a virus or for no reason at all)

The story... On Tuesday, April 2 I noticed red "pin pricked" dots and bruises on Collier's bottom. I showed Patrick, thought "what in the world?" and slapped some diaper rash cream on it. It cleared up in a couple of days. Then, on Saturday, April 6 these pin pricked dots showed up all over Collier's left arm. Both days, Tuesday and Saturday, I had put Collier in a Baby Bjorn... Could it be cutting off his circulation? My google research of "broken blood vessels on baby" turned up the term "petechiae", which I diagnosed as what Collier actually had. Rather than the heat rash I was hoping for, petechiae is actually bleeding underneath the skin. Along with petichiae came a whole slew of diagnosis that were bad... Real bad.

I took Collier in for his "rash" Monday morning. The first thing the PA said was "Oh, this is the one rash we do not like to see in babies.". Strep and mono came back negative. (I was secretly praying for one of these, as I would have gladly taken it over any other possibility). As we walked out of the doctors office the PA said, "Just don't google this." That damage had already been done, lady. We went home and waited for Collier's blood test results. Our pediatrician, not his PA that we had seen, called around 5pm and said that Collier's blood count was normal, a good sign, but that his platelet count was low. He then put me on hold and I heard, "No, she doesn't have to go tonight. I'll let her take him in the morning.". When he came back he said, "Jennifer, if you see any nose bleeds, bleeding from the gums, blood in the stool... you take him straight to the ER, ok?". Gotcha, doc. He told me we were being referred to a hematologist and to expect a call first thing on Tuesday telling us where and when.

Tuesday morning... Children's Medical Hospital calls and we are expected at 11:15am for check-in. Blood test taken, more waiting, and finally the results. White blood count looks good (means no cancer!), liver and spleen are not enlarged, lymph nodes look good, Collier has ran no fever, has continued to eat normally, and, in general, looks like a healthy baby... All really good signs. The one negative... His platelet count was 15,000 on Monday and 10,000 on Tuesday...normal is 150,000. Diagnosis is probable ITP. While the numbers are low, his blood smear showed some platelets are normal size and some are enlarged. So, we are taking a wait and watch approach rather than jumping straight to steroids. We'll be back Monday for another platelet count and again the following Tuesday and will go from there. ITP could last anywhere from 3-6 months, or could last longer.

Things to pray for... (1) That his platelet count goes up on their own (meaning that his bone marrow does it's job and produces normal sized platelets); (2) that he has no nosebleeds, blistering in the mouth, increased bruising, or blood in his stool or urine (immediate ER trip if any of these occur); (3) that we can contain our three year old and 90lb lab from injuring Collier... We need to be extra vigilant that Collier does not bump his head due to the fear of bleeding in the brain.

Out of all of the diagnosis' it "could have been", I will gladly take this!