Today was one of those days that keep parents up at night. One of those days you hope you don’t have to soon repeat. One of those days that makes a parent feel like a ton of bricks are on their back.
Today we went into Noah’s pediatrician for his 18 month check up and after talking to her about some of Noah’s recent symptoms decided that we needed to take him to Children’s Medical Center to have a CBC (complete blood count.)
Children that are born with Down syndrome (like our son) are at a higher risk to develop leukemia than typical kids. This usually just means having a complete blood count (CBC) preformed on a regular basis to make sure his white blood cells, and platelet count is all good.
Normally a pediatrician wouldn’t run a CBC at the 18 month visit, but Noah had some symptoms which caused some concern. He’s had a few fevers lately that seem to have occurred for no reason. He’s had a few bloody noses that have also seemed to occur for no reason. And the most concerning symptom, petechia.
After waiting for what seemed like forever, it turns out Noah is fine, and cancer free. I could go on and on about how scared we were today, how my wife and I both cried, and how fearful we were, but to be honest I’m physically and mentally exhausted after today. However, I will say that this day is a runner up to the scariest week of my life.
I wanted to share just a few things I learned today, in no particular order.
I apologize in advance if this list seems like sort of a ramble. Today was just so emotional and raw that I just wanted to have a record of what I learned. I certainly don’t want to forget anything. I’m also not going to to go into detail about any of these, so if you’d like me to explain any of them, leave a comment and I’ll be happy to (although I think most will be self explanatory.)
Ok, sorry for the ramble, but I wanted to get that stuff off my heart. I am so thankful that things turned out ok today. I want to add that there was a good possibility today that things didn’t turn out so good. That our son actually ended up having leukemia. My wife and I had more than a few conversations today as we waited on the blood tests about this, just to prepare our hearts and minds.
And we both said (multiple times) if that was the case, we’d trust God just as we have every since Noah was born. God hadn’t let us down yet, and He isn’t going to let us down. He is God, we aren’t. Humans don’t make very good Gods.
God would have been just as faithful, and just as good no matter what the results of those blood tests were.
And so we prayed (a lot) and we said “God we really want this test to come back negative, but more than that, we want you to prepare our heart for whatever happens.” And I know it’s easy to say this now, but if Noah’s test results would have come back positive for leukemia we would have a) wept like no other, b) grabbed our little boy and hugged him, c) Asked God to heal our little boy of cancer, d) praised God for being sovereign and in control, and e) asked God to help us bring glory to Him in this. Somehow, someway. (All of this would have been done through a lot of tears.)
If you are out there, and your child is battling something serious we want you to know that God is in control. He cares. He loves you and your family. And He really can bring you joy and peace. No matter what the “test results” come back to be.
Now it’s time for me to head to bed with a grateful and joyful heart. We made it through another day. It may not be this way forever, but for today, I’m thankful my son was born with just Down syndrome.
Thank you to everyone you prayed for our son and our family today. We appreciate it more than you’ll ever know.
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As the parent of a child with Down Syndrome that WAS diagnosed with Leukemia, and made it through the two and a half years of chemo treatment, and came out the other side a survivor...I can say I relate SO much to some of those things you learned today! I am so happy that the test was negative! The truth is, when faced with something so horrifying, you really have no choice but to let go and be patient and know that there is nothing you can do to control the situation. It was so hard, but we never could have got through it otherwise!
I'm so happy to hear about how well your child is doing, that's great news to hear! How old is your child now?
Whew, what an emotional day. Did they figure out what was going on to cause those symptoms?
Glad you linked to petechia, I would have had no clue.
I agree with you about so many of your things learned today, especially about taking blood from a little kid. They took it from James's head one time. Once the phlebotamist called someone else for tips before taking blood from someone so young (at that point I almost left!). And they strapped my older son (3yrs) to a papoose board to take his blood once. It's traumatic for all involved! I have learned that a children's hospital is the place to go, though. They definitely handle it better than anyone else!
Tell me about it...I was wore out last night, that's for sure.
But we are certainly praising God at the Smith house today!
As far as why the symptoms were happening, they pretty much just chalked it up to "boys will be boys." The petechia didn't look anything like what was in the picture I linked to. In fact unless you were looking really hard you wouldn't have even been able to see it. It looks like 1 small pin make here, and one small pin mark there. Very very hard to see, and kids can get them for a number a reason that have nothing to do with cancer.
Now just don't do what we did and start looking all over your kid and thinking every freckle is a petechia..you'll drive yourself crazy! hahah.
I'm pretty sure after the pediatrician found one spot on him we found 200 more before lunch and were convinced they were just appearing all over rapidly on Noah yesterday...hahah
It's not like parenting isn't scary enough....and than to just have stuff like this happen "just because".....oh brother.... :)
I hope all is well with you guys!
I will be going through that same fear in a few month my 12 year old daughter was reently diagnosed with Crohns disease and one of the meds she takes increases her chance of developing cancer and having Crohns alone increases her chances of getting intestinal cancer your experience today really hit home for me today and I love your list it is so true that there are many things we have no control over we just have to be there to give them hugs and kisses when all the painful procedures are done, I hate seeing her get her blood taken or an I V inserted for a test I am so thankful Noah is ok.
I'm sorry to hear about your daughter's Crohns disease, how is she doing right now? (And how are you guys doing?)
By the way, I don't know much about Crohns disease, what are some of the ways that it effects your child?
My gorgeous son, Liam, was also recently tested for leukemia because I was concerned about some strange 'things' and knowing that kids with DS are more at risk. It was terrifying asking for him to be tested, it was terrifying having the test done and it was terrifying waiting for the results. I truly empathise with you. We were also lucky to get the all clear. Knowing he just has Down Syndrome is always such a relief!
So glad that you guys got good news as well!
How old is Liam by the way?
I have to agree with all of these truths. Even harder than number 3 is when your child is no longer scared of or wondering why they are being poked with needles so many times.
Zac,
I agree. I look forward to the day when there are no needles needed...it's coming...one day. :)
So glad y'all received good news!! Stay strong Noah! You are amazing little guy who has very cool parents!
Thanks so much!
This post is SO timely. The extra medical considerations that come with DS can make for some very fearful days, but the knowledge that God has held them in His hands since before they were born helps dispel that fear.
There is so much comfort in that truth. Boy it's hard to really like that sink in at the time, but that's the truth that keeps us parents going!
Keep going strong, you guys rock!
We have gone thru very similar things with my son as well and we actually had his very last surgery on Wednesday. He was born with two cancerous tumors on his head and they rushed him off as well at birth and wouldnt let me see him. It was the most horrible thing I ever experienced. After 5 major surgeries and a my Son is now 6 and now I have a healthy boy going to first grade. The only thing that got me thru the past years is lots of love that my son gave me and lots of late night talks with God. He got me thru it and thinking for one minute that sonething is wrong that you cant fix is the worst thing any parent can experience. I remember having to have 5 nurses hold Troy down when he was two so we could do his first surgery and just crying so hard to make it stop and to let it just be to be the one to go thru this and I as well did my questioning to God. I'm so glad you guys got good news today and I know you already know this but we have such a Awesome God. Always keeping Noah and you guys in my prayers.
Thanks for sharing your story..I know all about those late night talks with God. Boy, oh boy.
I'm so glad to hear things are going well with your son. What did he have surgery on last week? How did that go?
Thanking God with you that your precious little guy is okay!
Thank you!
So sorry you had to go through that! We had the same scare when Paolo was two. We had gone to the doctor for a check up before a trip out of the country. She noticed he had Petechia and did a blood count. We were at Babies R Us getting last minute items for our trip when we got a call from the hematology Doctor saying that we needed to cancel our trip as they wanted Paolo to come in the next day for a spinal tap! Scariest day/night of my life! We spent the whole next day in the hospital and Paolo to endure a lot of blood draws and a spinal tap but THANK GOD he did not have cancer! For whatever reason his count was so low that they were 99% sure he did. He has been carefully monitored ever since and is now 5 with no signs of cancer. I know today was a scary day, it brings you to a place you don't want to go, but it also shows you how strong your faith is and that it will see you through these tough times. Kiss that baby boy for me:) I get teary just thinking of that time with my son. God bless all the children and parents that have had to fight cancer
I'm glad to hear your son is ok! Do you guys have any other children?