This guest post was written by Kimberly Light, mother to a 6-year-old ITP patient, as part of my ITP Awareness Month Iceless Challenge. If you want to share your own ITP story (or a poem or drawing?), please contact me.
It all started when we got back from our family vacation last year. I was getting my then-five-year-old daughter, Destiny, to bed one night when I noticed a bunch of red dots all over her stomach and legs. I asked my partner to come to look at it and she said it looked like it could be heat rash, so we decided it was nothing to worry about. A couple of days went by and we saw even more little red dots.
Then about a week later, we were in Walmart and Destiny decided that she wasn’t going to listen. I then told her that she needed to listen or she was going into the carriage. Of course, she didn’t listen so I went to put her in the carriage and at the last minute she put her legs down, scraping her leg, which is what little kids do so I looked at it and it wasn’t bleeding.
I figured there would be a little white mark if anything right? Wrong! After dinner that night I looked at the spot there were three long, thick, black bruises! I called her doctor right away they said she could be seen the next day; I had no idea what was going on or how seriously this was going to impact our lives.
The next morning she told me that she fell out of bed numerous times the night before, which is nothing new because she rolls a lot in her sleep. When I helped her get dressed, I realized that my baby’s little body was covered from head to toe with black and purple bruises.
We had her in the family doctors office that day. They had her in a room from 9 am until 4 pm, when they told me she had to go to the local lab and have her blood work done up. From then we went home to what I thought was the end of a horrible day – again, I was wrong!
The doctors called when her labs were back they told me that there was something wrong with her blood levels and that she had to pack for a couple of days and get to the Medical University of South Carolina (MUSC) where they were waiting for her!
I was so scared. So many things were going on in my head. I didn’t know what was happening to my baby girl! Finally, it was 9 pm and they had her in the ER waiting for a room. That’s where I met her doctor.
She came in and explained that my baby had a rare blood disorder called ITP, which is short for idiopathic thrombocytopenic purpura. She then explained to me that it meant she had a low platelet count and that platelets are what helps your blood clot. She then said that I had to have her admitted to start her infusions of intravenous immunoglobulin (IVIG).
I was so scared. She was five and she has a life-threatening disorder. They told me that your platelets are supposed to be 140-400 for a normal count*. My daughter’s was 4. They also said that ITP can be acute – which means it will go away soon, or chronic, which is long-lasting. I prayed my baby had acute and this was going to go away soon.
Needless to say, we spent about a week in the children’s hospital. Ever since that night, she has been in and out of the hospital. She has to get her platelet counts done every week which they do by drawing her blood every Monday morning. Then every other week she has to go to the clinic and get the IVIG through an IV, which she has to be careful not to pull it out for over six hours – which for a child is very hard! Not only is this an issue she has dealt with but they have tried her numerous medications. Unfortunately, none have worked to put her into remission.
Let me remind you that every medication has side effects. First, they did the IVIG which she would get nauseous from, so they give her Benadryl.
Then they admitted her and gave her WinRho – that worked for about two weeks.
Then they dropped faster than ever, which for people who don’t have ITP when your levels drop or are low it makes you feel crappy and tired.
Next, they tried rituximab. They had to do that for at least six weeks because it takes at least that long to see if it works. Well, the first two weeks for at least two hours after she got the infusions of this she had the chills. Then she started to get to where she couldn’t lift her arms or move her legs.
It was so scary and horrible to see my baby like that – not to mention the rash that put her back into the ER. While they were watching to see what caused the rash they tried to check her platelets and had to give her over 12 IVs only to then say she didn’t need one!
That is so hard to see my baby go through this, and she is so brave.
Now she takes dapsone and has to get the IVIG bi-weekly.
July 27th of this year (2014) was her first anniversary of having this bleeding disorder, so they have now diagnosed her as chronic. This was horrible to hear. They want to try Nplate, but I am scared to keep trying all these new medications because I wonder what they are doing to her body in the long term.
Now they want me to decide whether I want to try a splenectomy. Really? Have her spleen removed? I don’t know what to do.
It is so scary to have to decide this for another life. It’s really hard having a child with ITP. Sometimes, when she is getting an IV, she just begs for me to help her and I can’t do anything about it because they are over helping her.
She can’t be a normal kid. For her birthday all she wanted was a bike, so we bought her one only she had to wait until she got some infusions to ride it.
Every night when she gets her counts and they’re low I just pray that she’s gonna wake up in the morning. It’s so scary to think of just little things that can take her from this world; things that kids should be able to do; things that we take for granted.
I decided to write this story about what is happening to my baby to make people aware of this rare disease and help find a cure.
Please help spread the word about this disorder in hopes that they will decide to research it and find a cure. So I pray that if you read this you’ll pass it on, and they will read it and pass it on, so they can find a cure. For my daughter, being only 6 years old, she is the bravest person that I’ve ever met and I can truly say she is my hero.
A note from Just Frances:
Firstly, thank you to Kimberly for sharing Destiny’s story. It breaks my heart to hear of your little girl going through so much at such a young age, and I am humbled that you are willing to share her story with all of us in the hopes of furthering research for ITP. You can read my ITP diagnosis story here.
Secondly, here are some great resources for others to learn more about ITP. From these links, you’ll also find ways to donate or to urge your representatives to fund research. (And don’t forget that little things like just donating blood can help, too!)
And once you’ve read a bit more, please decide on your own whether or not you will donate money, or even volunteer your time, to help research this disorder.
And please share this post with your friends and family – and challenge them to do the same. Awareness is a key step to funding research!
* A normal platelet count is 150-400 x 109/L (or 140-400, depending on the guidelines being used) which equates to 150,000-400,000. However, the counts are generally quoted without the extra zeros. Hence, a count of 50,000 is referred to as 50.
[Photo copyright Kimberly Light.]