Our experience with the dreaded Petechiae started when Maxwell was less than a month old. I noticed a very swollen finger when playing with him one day and called our midwife. She recommended we take him to see a doctor, and this started the rushing to the hospital every time I saw a rash!
They did blood work and we sat in that emergency hospital bed for HOURS! I remember watching Netflix on my husbands phone to pass the time. Finally they came back and they told us they had no answers. They found a unknown blood cell and they were sending it off for tests.
Now I am a 24 years old still so naive to the world I am stepping into.
We are then sent to children’s for all his heart check ups and to talk to the doctor about his blood work. It was my best friend and I limping (still healing from my C section) through the hospital together all day jumping from one place to the other. Heart was good! We were feeling great! Then we went to oncology. We had no clue what oncology was, again so naive to what was happening, so while we waited in that office for Maxwell’s appointment we were shocked. We finally figured out what oncology was.
When we finally got to meet the doctor they went on to explain that those unknown cells was basically (now I am no doctor and I still find this quite confusing) pre leukaemia ( or TMD) however Maxwell had a huge chance that his body would do what it was supposed to and basically eliminate those cells, which it did!
So now we get his blood work checked every 6 months to make sure it is staying that way and so far so good.
HOWEVER, as a mom, of course you spend hours online looking for symptoms, signs, anything, like he definitely has leukaemia, right now!!! The biggest thing is bruising and the dreaded petechiae rash. The petechiae are pinpoint round spots that appear on the skin as a result of bleeding. They are flat to the touch and don’t loose colour when you press on them. Now ones with Down syndrome are more prone to get this just from even a cold! However, EVERY TIME I see it Maxwell has cancer! I know I know an over reaction! But everyday I feel like the terrible L word is lingering over my head, and every day I am grateful he went to sleep in his own bed, healthy! And seriously I am a mom! No matter how cool, or chill, or relaxed a mom you are if someone use the word leukaemia when talking about YOUR kid you will freak out!
It is important to remember every ones story is different because of course you read stories online about kids with Down’s syndrome with leukaemia and it always starts with a rash! At the end of these stories they always tell you never trust a rash! Trust your instincts. Better to be safe than sorry. However I think doctors hate us for it, yet most are very patient. I can’t even say how many times I have freaked out about a rash or a bruise, I won’t say it is quite embarrassing. Every time though it has turned out fine and I know how fortunate we are for that! So for now I will continue to be that annoying wife, friend, daughter, patient and mother that freaks out about every rash Maxwell gets!
This is just our story, so far, Maxwell is only 1, no one else’s. Some are worst some are better. But the main thing to take from it, I HATE PETECHIAE!
I will not end this by saying any of those never trust a rash statements but I will say, continue to take care of your kid, all your kids! This all started for us with a swollen index finger! Nothing else! So always ask the question! And continue to stand up for your kids! They are our gift and our most important possession and person in our lives, we are their voices and strength and it is a wonderful privilege.