The Hardest Month of My Life

idiopathic thrombocytopenic purpuraDecember of 2008 was one of the hardest months of my life. The end of the month found me curled up on the couch on Christmas day, emotionally and physically exhausted in the wake of three weeks of the stomach flu (including an ER trip for Sean), the death of a family friend and then Sean’s grandmother, my third miscarriage and this crazy scary experience with our third daughter.

Yesterday morning, we spent several hours at Children’s Hospital in D.C. after what has been a stressful and scary 48 hours or so before that.

Let me start at the beginning.

Last Wednesday, Sweet Doodle (15 months old) conked her cheekbone on the picnic table bench in our kitchen. As you can imagine, she got a pretty good shiner, but I thought that was the extent of it.

Over the following 48 hours, however, the bruise continued to spread, extending up under her eye. On Saturday morning, we noticed even more bruising on her eyebrow and forehead, and it was around then that we started noticing what seemed to be excessive bruising on her legs as well.

On Sunday, as we noticed even more bruising, I Googled “toddler bruising” and was reassured by site after site that bruising in toddlers can be normal and is usually nothing to worry about. I tried to shake the awful feeling in my stomach, but when I changed her diaper before nap, I literally gasped at the sight of her bruised up legs.

idiopathic thrombocytopenic purpura

That night, I typed a word into Google that I had been avoiding saying or typing until that point. I searched “toddler bruising leukemia.” The sites I came across confirmed that excessive unexplained bruising can be a sign of leukemia – as well as several other fairly serious diseases – and we made a decision to get her into her doctor’s office as soon as we could (not an easy task for a one-car family on a holiday week!).

When I woke up Monday morning, I was starting to feel a little less panicked and was thinking that maybe we could just start with a blood test and not worry about trying to get in to see the doctor. However, when I took off her pajamas to get her dressed for the day, I noticed petichiae (tiny red dots caused by blood vessels bursting under the skin) on her lower legs as well.

We made an appointment for Monday afternoon, and by the time we arrived, the petichiae had spread to her arms as well.

There was no doubt that both the nurse and our peditrician were very, very concerned by what they saw. Our doctor later told me, “My heart dropped when I saw that.” She sent us for STAT blood work at the hospital and told us to come back after the tests were done.

When we got back to the office, it was closing time and everyone was leaving, but our pediatrician (who I still love to this day!) made sure we were comfortable – or as comfortable as you can be in an exam room – while we waited for the results. Despite the fact that the phlebotomists had poked and prodded in my Baby Girl’s arm for over 15 minutes trying to find a vein before deciding to try her other arm, she was a happy girl, dragging the diaper bag around the room and playing with anything she could find.

Finally, the doctor came back with our results. She quickly explained that her white blood cell count was only slightly elevated and her hemacrit and hemaglobin (I think!) were normal, indicating that it was not leukemia or meningitis or another serious disease. She described another condition – idiopathic thrombocytopenic purpura – and explained that it was a condition with no known cause that can be triggered by a virus (i.e., the stomach flu). The body begins producing antibodies that attack the platelets in the absence of any remaining virus, which causes the platelet count to drop to dangerous levels.

At that stage, Sweet Doodle had a count of 12,000 platelets per liter, while normal levels are 150,000 or more. Because platelets are what cause clotting and prevent bleeding, the low platelet count was causing any pressure at all to leave a bruise or petichiae.

After touching base with a hematologist at Children’s Hospital in D.C., we were sent home with instructions to be at the blood disorders clinic at Children’s at 8am Tuesday morning.

We had another round of blood tests at Children’s (and thank you, Lord, that this phlebotomist simply inserted the needle, immediately got a vein and was able to get the blood sample she needed without too much trouble and no tears from my girl!), we met with the hematologist.

She explained that the counts were now 20,000, which brought us out of the critical zone where there was a high probability of internal bleeding. She explained the three treatment options to us (which I had already researched as well while I should have been sleeping) and recommended that we take a wait-and-see approach because each of the treatments does have side effects. I was very, very happy that this was her recommendation, as the treatment options all made me very nervous. While I had been willing to do them if we were still in that critical zone, I was glad that we didn’t need to take that route.

idiopathic thrombocytopenic purpura

At this stage, with a firm diagnosis of idiopathic thrombocytopenic purpura (or ITP), we will continue to take Sweet Doodle for weekly blood tests (at our local hospital) to make sure that her platelet counts return to normal within the next six months. We will need to be more cautious than usual to protect her from head injury (which could result in a brain bleed) and watch for increasing bruising or excessive bleeding that would indicate that the platelets had fallen again. In almost 90% of children with ITP, there is no reoccurence or further complication, and that’s what we’re counting on for Baby Girl as well.

While we waited at Children’s Hospital yesterday morning, I was on the edge of tears most of the time. Not because of my Baby Girl’s diagnosis, because I had read enough to know that it was going to be okay, but because of all of the other children we saw – with bald heads from chemotherapy and wearing masks because of compromised immune systems. How thankful I am that our diagnosis is what it is, but my heart breaks for the parents who are watching their children fight a much bigger disease.

A week after I wrote this, we ended up being admitted to the hospital because she spiked a fever of 104 out of the blue. However, her nose started running the next morning and it turned out to be a simple cold virus. Sweet Doodle’s levels returned to better than normal within four months, and she hasn’t experienced any other symptoms or lasting effects. She doesn’t even remember any of this happening!

What experiences will you carry with you for the rest of your life?

This Post Has 4 Comments

  1. I just now found this, linked from your LIVE! email updates. I was diagnosed with ITP when I was five years old. I’m one of the 10% that doesn’t outgrow it… but even there, it’s possible to have a (relatively) normal life. I feel for you — my mother tells me it scared her to death when I was little. If I can answer any questions or offer any other encouragement, let me know.

  2. May I just say without your story, I would still be crying in fear and worry of an ITP diagnosis. Well I still am, but your story has helped me tremendously. My 8 year old little girl has been coming home from School with bruises that look awful, some she got just by playing on our tire swing. She was scheduled to have surgery next week on her ears, so as a Mom I was already stressed enough. I asked her everyday how she got those bumps and bruises but here was never a 100% answer. My daughter has never not known how she got hurt. In the back of my mind are words like leukemia and cancer and blood disorders. I immediately turn to Google and I came across your story. I called our Pediatrician this Wednesday and we had her blood counts tested and her platelets were 14000. I was in shock. I thought my baby is so sick, and she could have cancer. It is a good thing that I am worry wart as my mother would say. Otherwise my daughter would have been going into surgery with an unknown high risk of bleeding. Our Pediatrician said everything else blood wise was good though, so that mostly ruled out Leukemia. I suggested that I thought she could have ITP, and the Doctor said that was a very good possibility and that she would call the Hematologist at our Children’s Hospital and setup further testing. Today our fears of ITP were confirmed . But thanks to your uplifting story of hope and courage I have a better outlookfor my daughter’s recovery with this disease. My question is are there any food that you might recommend to help increase platelets and do you have any advice for me constantly worrying that she could fall or trip or hit her head or bump into something. I still feel as though I can’t eat or sleep without worrying about her and I find myself constantly praying and crying and crying and praying. She is in School which worries me even more because I’m not there. I know there is a good chance of recovery and that there is a small chance that she could still have some other horrible disease if she starts presenting other symptoms, or even continue to live life with this disease, but I am a Mom it is my job to worry. Any advice would be greatly appreciated!!

  3. Hi Jess! I’m so sorry that you all are going through this. I know it’s scary, and nothing I say will 100% take that away. But let me share this little bit with you…at the time our daughter was diagnosed, she was 15 months old…and she was a headbanger. As in one those toddlers who would bang her head on the floor whenever something didn’t go her way. I was so very terrified that she was going to seriously injure herself, but our doctor reassured us again and again that she would be okay and that she’d need a SERIOUS injury (and not a typical childhood injury) for the ITP to be truly dangerous (which is not to lessen the seriousness of it, because it is serious, of course!). My guess is that you’re scheduled for regular blood work and will see her platelets start to bounce back quickly, and we saw every blood test as a reassurance that she was going to be just fine. (As a side note, a local friend of mine’s son ended up needing steroids for his platelets to begin rising again, but he was just fine too!).

    I’ll be praying for peace for you and for a quick and complete recovery for your little girl! <3 I'm so glad you followed your instincts!

  4. Hi. My daughter was 2 yrs old when she was diagnosed with ITP. It started with the petichiea under her eyes and on her legs followed by a big bump and bruise on her eye. Her count was at 3,000 when we went to the pediatrician so she was admitted to the hospital right away and began treatments of IVIG. She had to have two or three of those treatments before we could be released from hospital a few days later. No active bleeds tho, praise the Lord. She didn’t go back to normal for a while so she did have to have steroids. She did not get back to normal within the 6 months so they consider her chronic but the past year she has had normal counts so considered in remission. She is 5 now. She also had to have a bone marrow aspiration to rule out leukemia. Negative there thank the Lord. I agree one of the worst parts is the pediatric ontology office we had to go to each month. I pray for those children. By far the scariest thing I’ve had to go thru. She was a trooper.

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