34 Lessons I Learned From Thinking My Son Had Leukemia

leukemia boy child baby down syndrome

I love this little boy!

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.)

  1. Being a parent is scary. 
  2. Cancer is scary.
  3. Holding your child down as they are screaming and wondering why some lady is sticking needles in their arm is heart breaking to me.
  4. God holds the whole world in His hands.
  5. There are things in life that as a parent you have no control over.
  6. Sometimes as a parent you simply can’t kiss it and make it all better.
  7. You truly, really, without a doubt never know how long you (or your child) as on this Earth.
  8. Enjoy every second you can with your family.
  9. Hug a lot.
  10. Play a lot.
  11. Laugh a lot.
  12. It’s ok to cry. Yes, even for guys.
  13. Even pediatricians worry about their children.
  14. Thinking your child could die as a result of a “disease” is sheer terror.
  15. Thinking something is seriously wrong with your child puts everything else going on in your life on pause. It’s as if nothing else in the world is happening.
  16. Our mind is capable of coming up with all sorts of scenarios that probably won’t ever happen.
  17. Learning to control our mind (and our imagination) is hard.
  18. You either believe that God is FULLY in control of everything on this planet, or you don’t. What you can’t do is believe He is only partly in control. It’s all or nothing. Not both. 
  19. You have to believe that God loves your children even more than you do.
  20. You have to FULLY trust God. Both in your life, and in the life of your children.
  21. Number 20 is hard to do sometimes.
  22. The tears a parent cry for their children are some of the most hurtful tears a person can cry.
  23. Seeing your child play and be happy and not realizing that something could be horribly wrong with them is heartbreaking.
  24. I love being a dad, and a husband. A lot. (I already knew this, but was reminded again today.)
  25. Prayer is powerful.
  26. God cares.
  27. God doesn’t abandon us.
  28. God gives peace and joy even when there doesn’t seem to be any in sight.
  29. I hate, yes hate, cancer.
  30. Waiting on test results is one of the worst feelings in the world.
  31. Getting a call from a doctor that things aren’t what you thought (in a good way) makes you very happy.
  32. Sometimes you cry weep when your happy. (Those tears are wonderful.) 
  33. Being a parent is scary. 
  34. God is bigger than our fear.

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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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. 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!

  2. 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!

  3. suzie strubel says:

    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?

  4. 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!

  5. 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.

  6. So glad y’all received good news!! Stay strong Noah! You are amazing little guy who has very cool parents!

  7. 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!

  8. Amanda Rendon says:

    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?

  9. Thanking God with you that your precious little guy is okay!

  10. Heidi Fidanque says:

    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

  11. maddison jacobs says:

    thank you for sharing this with us . ryan n i said a special prayer today for you n your family n our sweet little friend noah .i will pass the great news on to ryan in the morning n i will say a prayer of thanks to god for keeping noah healthy. i say prayers to godeverytime my kids are sick that its nothing real bad . ive been thru the rough times with my kids losing my son jake was the hardest thing ive gone thru n dont wish that on anyone . i know god is the one who got me thru it n brought me ryan n now aimee . he is good im so blessed as you n your family are with such a sweet little boy . thanks again for sharing him with all of us . hugs lil man prayers for continued great health for him .

  12. God bless all of you.!

  13. Lisa Herring says:

    God is amazing. Not only because your son does not have luekemia. But because He has taught you so much through this experience. And in the end, through this test you have still managed to bring as much glory to God as if Noah had had cancer. Job well done. And may all the praise and honor and glory be to God forever. Sleep tight loving dad. Thank you God for your peace.

  14. Amy Snay Jacobs says:

    What a wonderful post. Praise God, Noah is healthy. Thankyou for the links so I can read up on this. I know God is in control but this is a big fear of mine. Enjoy your little seeetie!

  15. Karen Eichensehr. says:

    So glad to hear the positive results of your doctors visit today. As you know, thyroid problems are also very common in DS children. Patrick has been on synthroid almost his whole life, for which he has blood tests every 3 months. At every other visit I insist on a CBC with his blood work up. Amazingly, the doctor sometimes asks me why? I am the one to tell him/her that Patrick is more .likely to get leukemia than other children. I have to be the one to initiate the extra blood test–so stay vigilant as I am sure you will. Patrick has always gotten Petechia easier than my other children and recently he had it all over his face for which I was becoming very concerned. Eventually i realized he was doing cartwheels on his trampoline and I believe that was causing it in his face. Anyway, I wonder if children with DS get Petechia more often?

  16. Many years ago, when my son had kidney infections starting at age 3 and then surgery, I found I couldn’t say to him “it will be ok.” Instead, I said “I’m right here with you.”

  17. rick i am so glad he is ok I cannot think of anything worse for a parent to go through. so i am really glad he is ok

    • It was a hard day, but there is much worse things a parent can go though…although I don’t really like to think about them. 🙂

      I hope your family is doing well.

  18. GOD BLESS!!!! I am so glad that all seems well with Noah. In my former life (before having baby 3 + 4) I was an Early Intervention teacher and saw far to many of these amazingly special kids face cancer. I will pray that god continues to keep Noah safe, and cancer free. I can fully understand what you are going through. My oldest son now 7 has Neurofibromatosis and has recently developed a neurological tick. We will go for an MRI in July to make sure it’s not a tumor in his brain as happens alot with these kids!!!! Thank you for sharing Noah’s trials and tribulations. His story has captured my heart!

  19. AMy Dolloff says:

    My son is now 3 ThankGod. First we got told he would not make it to birth he did not have DS but Tri 18 (by ultrasound), he has DS. He was born 2 months early. He then stayed 5 months in the NICU (short verson) and came home trached, gtubed, vented and severly delayed. Thenabout 4 months after being home we noticed these faint red spots (peetichie) come and go – he pedi took note and told us keep an eye on them. Then 3 1/2 months later they all of a sudden started getting worse. We were seeing his pulmo/neonatolgist and see called Hemonc. A few days after turning one we were headed in for a CBC. His platettes were 38 (in the toliet) and a few days later in for a bone marrow asperate. A long atory short that weekend of waiting wall hell – I had a breakdowndown for the last last 8 months of Hell and now Cancer to boot – AML M-7 (leukemia). DS kids are 20% more likely then the normal pop. * months to the day of being home from the NICU we checked into the PICU for a 6month stay for 6 rounds of chemo (due to his medical state and distance to the childrens hospital). His emonc doc said he sould be 100% leukemic for having petichie for 4 months but in rare cases in DS kids it will sit and smolder then take off. After round two of the chemo he developed Acute Respitory Distress Syndrome (ARDS) – he was at deaths door. The PICU staff was throughing all their medical knowledge at in, pallative care was brought in, hospital staff we know were visiting and crying with us. Respitory and docs said one hicup and there was no more they could do – he was on 100% support. One night respitory had to take him of the osicalltor vent and bag him for an hour – with 100% o2 and nitric his was still only at 60% o2 stat, bp in toliet, full of fluid, could not regulate body temp and more. Long story short again he came home after 4 months in the PICU very weak. Hemonc with tears in their eyes said if it comes back no more can be done – 2 1/2 years later he is still trached, is off the home vent, no more o2 needed, and we still have a remission. I have read some lit. – (based on finishing course of treatment) if you get a remission in a DS kid it usually holds. His last CBC a month ago was perfect!!!!

    So happy you all got great news and Have a happy ending.

  20. Thank goodness Noah is okay! What an emotional day for everyone.

    Can I also just say how nice it is to read your blog glorifying God? You do it in such a way that it isn’t preachy, it isn’t shoving your beliefs down others throats- you just say what you believe. It can be hard to do that in a world where everyone seems so anti-Christian. It’s just really refreshing. You guys are a blessing for so many!

    • Hey thanks! Your comment really means a lot to us. We really aren’t (and don’t even want to be perceived as preachy.) We have a very real relationship with God through Jesus Christ, and for us talking about God is just as normal as talking about the weather. He just has such an active role in the life of our family.

      Instead of putting crosses and verses all over our website our hope is that we could just live out what we believe and hope the world notices. Thanks again for your kind words.

  21. Michelle says:

    I am so relieved to hear that Noah is ok.

  22. Shirley Henry says:

    You certainly have been blessed. Persons with Down Syndrome are amazing. Jonathan, who has Down Syndrome, was born with leukemia. We thought that Jonathan was going to be taken away from us, but he was a fighter. Then when he was 6 mons old he was diagnosed with testicular cancer. After a course of chemo & years of followup he has been cancer free. That first year of his life involved countless hospitalizations, trips to the doctor & blood tests. Jonathan was a fighter then, requiring me to hold him down while blood was drawn. A hug & words of encouragement were all Jonathan needed to carry on. A blood transfusion back in 1983 has now resulted in our son having Hepatitis C. ( Blood then was not screened ). Again he is followed by a specialist for the hepatitis C & treatment will be in his future. Jonathan is now 28 & loves life. He is an athlete, favorite sport swimming. He competed in the World Down Syndrome Championships in Taiwan in 2010 & this year he is headed to Italy to compete. He has made our life so complete. Give Noah a hug from us.

    • Oh yah, we know all about Jonathan. We enjoy getting to know him on our Facebook page! He is an awesome young man indeed! Thanks for taking the time to share!

  23. Sans the religion, I know exactly what you’re saying….and my son doesn’t have DS or Leukemia.

  24. I have been their with you. Eric has CBC’s every 3 weeks. We have had to do Bone Marrow and Bone testing. His Marrow is abnormal. We have no clue when we need to do this again! He was with Downs and had a blood disorder called TMD ( transient leukemia). We just celebrated his 1st Birthday! It was a long year with 1 week of chemo at 7weeks old, 4 blood transfusions, marrow and bone core testing (which he was put to sleep for). Not to mention a cast on his leg and waist for 3 weeks.
    I am so glad Noah is alright! God is good all the time!

    • Wow, 1 year old; that’s a big one! Happy birthday to your little man! How fun fun! What did you guys do to celebrate?

      Also what did he do to earn that cast on his leg and waist? Is it a fun story? (hopefully not a sad one.)

  25. I completely and totally get it. We aren’t a DS family, but I can relate to the scare, the horror, the sheer helplessness of that kind of situation.

    DD, who is now 6, died three times after an operation to remove her tonsils and adnoids at age 3.

    I was all alone, no support, but I didn’t feel alone.

    I know who was next to me, holding me up and keeping me talking to her, trying to coax her out of this madness.
    I know who gave the the strength to hand her over as she seized and quit breathing and had to be bagged and resusitated.
    I know who gave me the peace of mind to sit and shut up when all I wanted to do was scream at people.
    I know who showed me what else was wrong with her (anesthesia induced pneumonia) and gave me the right words to demand a pediatrician and a specialist.
    I know who showed me that, what ever the end was, it would all be ok.

    Thank you Jesus for Olivia. Thank you God for Noah. and thank you for loving all the little children more than we ever could know.
    I stood there and watched them paddle her to re start her heart.

    • I’m not sure why the paddle her heart part ended up there! It was supposed to go at the beginning. Sorry!

    • It sounds like you know very well who holds the whole world in His hands!

      I’m glad to hear things went well, how is everything with your child now?

      • With that particular problem, she doesn’t do well during surgery (she has had two since, and possibly a third soon) She has a skull and jaw malformation, which is why they had to take out the pound of tonsils and adnoids. She is awesome though. Her name is Olivia, and she loves your site and wants to squeeze and hug and snuggle Noah every time we see his pictures!

  26. So happy for you that the test came out negative. I think the things that scares me the most is that I can’t kiss and make everything better. It’s easier for me to be in pain than it is to see someone i love suffer. But you’re right, if God is God, than I need faith not just in my life but that He will oversee it in the life of others I love. Somehow Christ’s atonement does what I cannot. But it’s all so very hard, perhaps the hardest thing to learn in this life. Hugs and love to your precious
    family

  27. Ellyn St. Peter says:

    Wow, did this post bring back memories. We had the same experience when our Nathan was small. If I remember correctly, we started noticing bruising that we couldn’t account for, from his day to day activity, so our doctor checked him out too. It is a scary thing to go through and I’m glad to hear Noah is ok! Hard on you guys as parents too! Nathan is 18 now and I hadn’t thought about that test in forever. I hope this is one experience that can fade into the background for you as well. He’s an awesome little guy and I’m sure there are great things in his future! God bless you guys and keep up the good work! -Ellyn

  28. OMG!! Thank goodness he’s ok! That’s the one thing that freaks me out about Ds. I can handle everything else but the fear of Leukemia is seriously overwhelming! Emmie had some petechia once, no other symptoms mind you but i swooped her into the doctors immediately. her pedi new right away, (even without me saying anything) what I was thinking). I didn’t care how stupid i looked, i needed to hear she did not have leukemia. Thinking back on it i must have looked like a nut.But the fear that your child has a higher risk of getting something that can potentially kill them makes you do things you wouldn’t normally do. If Em didn’t have Ds i probably wouldn’t have even noticed the petechia. So relieved for you and your wife, what scary time.

    • My wife (a pediatrician) actually that if Noah didn’t have Down syndrome she wouldn’t have even been concerned about it being Leukemia, but it’s always important to rule things out that you concern you.

      I don’t think you sounded like a nut at all…more like a loving and scared parent. Keep up the great work!

  29. Straight from the heart. I appreciate your faith and I feel that your brilliant attitude will bring a beautiful life. Noah is absolutely precious. Having worked with special needs children for 36 years I find that children with Down Syndrome are the heart spot of all.

  30. Oh my gosh, that post hit so close to home that I’m crying right now. My oldest son doesn’t have DS, but we had a major scare with him around 18 months where the worst case scenario was that he had a brain tumor or Cystic fibrosis. It was a 5-month-long process to get a diagnosis and it didn’t help that I was pregnant. The worst memory I have was when we went in for our bloodwork together — I had 8 vials taken as my prenatal bloodwork and my tiny little 19-month-old had 5 vials taken. It was really difficult to comfort and reassure him while I was holding him down for the phlebotomist and I felt so terrible!

    I guess I was so preoccupied with pregnancy and appointments with gastroenterologists/labs/geneticists that fear couldn’t get too much of a grip on me at that time.

    I totally empathize with your family and you will be in our prayers.

    • Bless your heart, that is a lot to go through. How are things now with kid-o’s? Everyone doing ok?

      • They’re OK. My oldest ended up being diagnosed with malabsorption caused by pancreatic insufficiency. His genetic testing was negative for Schwachman-Diamond syndrome and the labs eliminated Crohn’s and a bunch of other stuff. He also has ADHD/ODD and possibly Tourette Syndrome. But honestly, compared to having a brain tumor or cystic fibrosis, this is a piece of cake and we’re counting our blessings! My two younger boys are perfectly healthy, though my youngest is showing signs of failure to thrive (probably because he’s so active). So far, baby on the way seems great, but it’s too early to really know anything.

        Thanks for asking. =)

  31. Diana Johnston says:

    Praise the Lord that Noah is o.k. Being a parent is scary at times. When I was pregnant with our Heather, who was born with DS, I was flat on my back for the last 5 months, due to placenta preevia. I was in the hospital 5 different times, almost bled to death. Every time my Dr would say, you know the drill, if the bleeding doesn’t slow down, you’ll have to sacrifice the life of the baby to save your own. It was a very difficult time as I’d go in for an ultrasound and the baby was FINE, moving around and no problems. I’d lay there and pray asking God for me NOT to have to sacrifice her life for my own, but if it was His will that that had to happen to PLEASE help me get through it. He gave me the strength and Praise His Name, we made it through. She was born New Year’s Eve night 2008. She had 3 holes and a leaky valvein her heart. She had open heart surgery the week after she turned 5 months. That was a scary time, but I knew she was in God’s hands and no matter what happened, He would see us through it. She came through with flying colors, was in the hospital for 10 days and came home. She see’s her cardiologist once a year now. She has thyroid issues and takes synthroid, has since about one month old. She is in great health, she adores her big brother, Matthew who is 5. It blesses my heart to see how much the two of them love each other. We’re so blessed.
    I’m so thankful that Noah’s test results came back negative. Like you said, God is good all the time…through the good and bad times too. He is ALWAYS here with us to see us through. Thank you Lord Jesus!!!! God bless you and your family!

    • Praise God for that great news!! Thanks for sharing that with me. Do you guys have two children?

      I’m so glad to hear that everything turned out ok, what an amazing story. I hope you share that story often because it is awesome! 🙂

    • Indeed that is an awesome story! Praise God for sustaining you. The world can’t understand why anyone would have child with DS anymore (much less enduring the pain you did) with all the pre-natal testing. Thanks for being a light in a dark world.

  32. George H says:

    We went through something similar when our son Michael (w/ DS) was born. White cell count was VERY high at birth, then dropped to below 500 for 2 consecutive tests (about a week apart). We went to the Pediatric Oncology Department at the University of Michigan Hospital when he was 4 weeks old. Spent what seemed like a long time there, saw lots of kids that were battling cancer. Turned out that Michael was fine – his cell count had rebouded, still no idea why it happened. But it put Michael’s DS in perspective. There are a lot of kids (and people) dealing with a lot worse things than having one too many chromosomes… When you see a 8 year old child in a wheel chair celebrating that his cancer hadn’t spread in 6 months – an extra chromosome doesn’t seem like that big of a deal…

  33. Noah is one lucky boy…he has amazing, faithful parents. Your family is an inspiration!

  34. I’m crying reading your post reminding me of our three tests for leukemia for our 18 month old daughter, Grace. The first time was awful, second time was awful and third time was awful but realized this is part of rulling out leukemia as the cause for unexplained sickness. Each time I was on my knees praying to God for our precious girl to not have leukemia, calling family to pray and emaling our small group for prayers. Grace had open heart surgery at 5 months but I have to say I was more scared with the thought of leukemia. Fear is not from God, keep having to remind myself to not be fearful and to fully trust God!
    She’s been diagnosed with arthiritis in her knee which is causing her to not bear weight on it. She was standing and all of a sudden stopped and would cry if standing. After 5 months of ERs, doctors and specialists we have a diagnosis but no change. It’s difficult to see them in pain each day.
    Praise God that Noah does not have leukemia! Hope precious Noah feels better soon!

    • What great faith you have! I love hearing this. It sounds like your have a great church / group of friends you have.

      You guys sound like great parents. Thanks for sharing this with us.

  35. Becky Johnson says:

    As a parent with a child with Down Syndrome and as a parent in general, these are terrifying things to deal with and things we worry over, but as you mentioned above many (in fact most things) are not in our control. I wanted to share a story with you about my youngest sister. She did not not have Down syndrome, but she did have leukemia and was diagnosed when she was 18 months old. I was only 12 at the time, but was the old enough to recall the turmoil my parents felt. The spinal taps, bone marrow biopsies, the hours spent in the hospital…but through it all I remember the love my parents gave to not only my very sick little sister but to the rest of us at home too. The teachings they gave to us on trusting God, and leaving things in His hands. My sister went through three years of chemotherapy treatments and has been in remission since. She is 29 years old today, and just had her very first child after being told she will likely never be able to conceive after the chemotherapy she had during those early years of her life. There is much to be thankful for, and I certainly understand your fears as they are definitely close to my heart and mind. You can indeed drive yourself crazy trying to find any evidence…but to only trust our little ones to Him who has them in His care! So glad to hear your little guy was found clear of cancer! Hug him once more! 🙂

  36. Rick, thank God Noah´s results came back negative for cancer. I have been thinking about it all day long since your post yesterday. Thanks for letting us know about Noah and your feelings. Eventhough our kids with Down Syndrome give us so much joy, we also are constantly concerned because we treasure them so much. Only God give us the strength we need to walk this path with trust, patience and believing He is in control. Give Noah a tiny kiss in his tiny nose from us.

    • Thanks for the kind words. I think parenting in general (Down syndrome or not) is one of the hardest (and most rewarding) ‘jobs’on this planet.

      It has it’s hard days, but man oh man do those hard days ever make you enjoy the good days even more!

  37. Great new about Noah!
    Ava Skye is now home from the hospital!!!!!! ton of follow up appointments scheduled and she is home with an oxygen tank until her lungs develop a little more, but atleast we are at home! It has been confirmed that she does have Trisomy21 and when they told us we initially broke down again. They know we want more children and explained that we are not at higher risk on the next one. We always wanted our first to have a sibling and now we want one even more so. We are very excited to start this journey with Ava. It is stressful with all the unknowns, but we believe this is a blessing in disguise. We met with a Zero to Three team today and physical thearpy and occupation therapy will be starting in a week or two. What has everyone experience been with these therapies? they explained to us today that she has a lack of gross motor skills, but did say she does move around nicely, follows with her eyes, and was able to pick her head up just not hold it up long. Seems like a normal little newborn to me! Anyway hope all is well with everyone.

    • Congrats on the birth of your baby and bringing her home! So awesome. Feel free to post a picture of her on our Facebook page. 🙂

      By the way Noah does 4 therapy visits a week. You have a lot of good articles under our therapy section you may find useful. Also I really like the turtle we listed on our favorite toy article. There are some other good ones on there worth checking out. Please keep us posted on our journey. We can’t wait to watch her grow up! 🙂 http://noahsdad.com/gift-ideas-down-syndrome/

  38. Hi there, well I’m one of those parents who got the phone call that changes your life – “we think she has leukaemia – you need to go to casualty right now”. And yes, our little Lucy at 9 months was diagnosed with Acute Myeloid Leukaemia. I yelled at God while driving down the freeway in torrential rain that He couldn’t have her, not yet. I have shed so many tears over our Lucy, but in God’s kindness after 8 months of treatment she has now been in remission almost 18 months and is doing really well, doing lots of 2 year old stuff and being generally gorgeous. The treatment took a huge toll on our family, and ultimately my husband decided he didn’t want to be married anymore…. Not something that I ever ever saw coming, and something that has completely devastated me and still causes me huge pain everyday, our children (we have 4, all uner 8 years), our families, our church and our friends. But God is kind, and has taught me to absolutely trust him in a way I never have before with my life and the lives of my children. Truly, He is enough.

    • Thanks for sharing. I’m sorry to hear about your husband not being able to handle it. I can’t even imagine how hard it is to do what you do alone. But thanks for stepping up and being a great mommy! You should like an awesome one.

      I’m so happy to hear that your Lucy has been in remission for so long, how great!

      Where are you guys from?

  39. Sorry – forgot to say Lucy has Down Syndrome too. And yes, it’s ok! It’s hard, but it’s ok!

  40. Proud of you Rick and the way you are celebrating God’s goodness to you and His glory to the world through the beauty of your son Noah. May Noah’s life be everything the Lord intended as you raise him, love him and trust him to the Savior.

    Indeed, “God would have been just as faithful, and just as good no matter what the results of those blood tests were”. Preach it.

    I look forward to holding and laughing with Noah one day soon. Proud of you.

    • Todd,

      Thanks so much for taking time to leave your comment. Thankful to have known you these 15 or so years. Crazy!

      Thank you for your love, faithfulness, and impact in my life!

  41. Christana says:

    I hate cancer too. With that being said, Logan has not had cancer, but my “mother-in-law” passed away from cancer in 2009. Logan does have hypothyroidism, and has since he was around 3. Unfortunately he has to have blood draws often, sometimes only every 6 months. As he gets older it seems to regulate better. But it does break my heart everytime I have to hold him down (or papoose him) for a blood draw, an ear cleaning, a dental visit or whatever else we’ve had to do. 🙁 I am thankful for what he does not have, and that he doesnt have anything that isnt being taken care of… but as a parent of course you wish your child was completely healthy. I would have to say my most terrifying moment in his medical history was his open heart surgery (he was almost a year old) But he is a warrior and he’s fought his way through everything thats been thrown at him!! Thankfully Noah is doing well, I keep him in my prayers <3

    • You guys sound like great parents. I’m thankful your child has you. I’m also thankful everything turned out well with all of the medical procedures.

      How old is your son by the way?

  42. Jody Gallagher says:

    Isn’t God so amazing! My heart goes out to y’all for the scare. I remember when I was pregnant with our Levi he had fluid on his brain. It was so scary for us. We prayed so hard and guess who answered? I thank God daily because by the time Levi was born the fluid disappeared.

  43. I can relate also on this topic Rick…My now 14 month old Chase(DS) had a scare of Leukemia at 3 weeks he had a low platlet count coming out of the hospital after being born and then when we went to the ped. a couple days later they took his platlets and they were 22 and the norm is 100-500. So needless to say they sent me off to a Ped. onocologist for more blood work and we got admitted into the hospital for 3 nights for bone marrow extract, and to place a broviac catheter in his leg for blood tranfusions and chemo is needed. It was the longest couple of days waiting for test results. He needed 2 more platlet transfusions and a hemoglobin transfusion and lots of blood withdraws for the next 6 months after that. Happy to say he has wonderful platlet counts now and we just had a total check up and blood withdraw last week. I hope this leukemia scare is a thing of the past now ….I will keep my fingers crossed:)

    • Wow. That certainly sounds scary. Thanks for sharing that. I know one thing, having children in general (regardless of of they have Down syndrome) has certainly caused my trust in the Lord to grow a million times over.

      Some things are out of our hands as parents. 🙂 Keep up the great work!

      Do you guys have any other children by the way?

  44. I am so glad that your son does not have cancer. These 31 lessons are the exact same lessons that we learned when our daughter was diagnosed with brain cancer in 2000! thanks for sharing your thoughts!

  45. I am so relieved for you that your son doesn’t have cancer. And you are so right, God is in control. 2 years ago our little girl Emily (16 months at the time) was diagnosed with AML…she has Down Syndrome as well so we knew she was at increased risk. God certainly watched over all of us and sent the most amazing people throughout our journey to be Jesus’s hands and feet. Emily has been in remission for almost 2 years now and we are so excited for the day 3 years from that that she will officially be declared CURED 🙂

  46. RayLene Logan says:

    Every year my Doctor does a blood test to rule out luekemia on my daughter, Kara. Every year I wait on pins and needles, hoping against hope for good news. She is only two, so I’ve only had to do it a couple of times, but just that is scary enough. I am so very glad that Noah is luekemia free, and am even more glad for fellow believers who maintain such a testimony in the scariest of times.

  47. Marco Paolo M. Victoriano says:

    I’m also a father of a child having down’s syndrome. He’s now at 10 months old. I am from the Philippines. Me and my wife were inspired by your son Noah. God has big plans our children. I declare that His miracles will work for our son to make them free from any sickness. God bless. Keep up your faith high.

  48. My youngest daughter, our diminutive little princess, was tested to rule out leukemia when she was two and a half or three years old. She doesn’t have DS, but she had dark circles under her eyes, seemed not to be growing much and to be bruising easily, and the lymph nodes on both sides of her neck were swollen like clusters of grapes. I can clearly remember the doctor doing the ultrasound on her neck to check her lymph nodes and being very intentionally upbeat to try to calm the fear that I know was written all over my face, even while writing the order for the CBC. I remember being sick with fear, and all of those feelings you mentioned. Watching her play and trying to convince myself that she wouldn’t be able to play like that if she was REALLY sick. Or how that carefree play would be just a memory if she really was. The worry, the fretting and waiting… the relief. The amazement, in retrospect, that it was even possible for us to function in that limbo of uncertainty. The gratitude for my children. Sometimes we need to be reminded how much they mean to us. 🙂

    Your son is adorable, and I bet he will be an amazing big brother. 🙂

  49. Our son w/Ds was born with an elevated white count so he got put into that lovely category of having an even higher risk than others with Ds, so her we are at 17 months and have thus far been blessed with normal results but each month he is tested and since there have been no symptom, I am able to on the surface forget for a little while in between. Each month that fear comes back in full force until we get the call saying all remains normal. My take away from things in addition to all you mentioned is that it keeps all other drama in my life in proper perspective and I can tackle much that I would never have thought before. I don’t get worked up over the unnecessary often. Last month when we had our test, I was in a principal’s meeting ( I’m a school principal) and there were area reps from relay for life who came in to drum up support by showing statistics of how many in our division had loved ones, themselves, and students we have who are or have dealt with cancer. I’m new to the division and it was all I could do to hold it together that day while I waited anxiously for the call. I know that my boy is so strong but he’s had plenty already and so have we. But you are absolutely right all we can do is trust in God, Will has been my perfect example of God’s love. Thank you for your blog, it helps to know that we are not alone in our struggles, fears, and absolute joys.

  50. Our son w/Ds was born with an elevated white count so he got put into that lovely category of having an even higher risk than others with Ds, so her we are at 17 months and have thus far been blessed with normal results but each month he is tested and since there have been no symptom, I am able to on the surface forget for a little while in between. Each month that fear comes back in full force until we get the call saying all remains normal. My take away from things in addition to all you mentioned is that it keeps all other drama in my life in proper perspective and I can tackle much that I would never have thought before. I don’t get worked up over the unnecessary often. Last month when we had our test, I was in a principal’s meeting ( I’m a school principal) and there were area reps from relay for life who came in to drum up support by showing statistics of how many in our division had loved ones, themselves, and students we have who are or have dealt with cancer. I’m new to the division and it was all I could do to hold it together that day while I waited anxiously for the call. I know that my boy is so strong but he’s had plenty already and so have we. But you are absolutely right all we can do is trust in God, Will has been my perfect example of God’s love. Thank you for your blog, it helps to know that we are not alone in our struggles, fears, and absolute joys. This is Will from this morning where we had our own journey of worry and blessing

  51. I have to say, I absolutely think your baby boy is soooo adorable. Those eyes are wonderful!
    I have only started reading your blog and I love every minute of it. You are very inspiring.
    My son, Ryan is six years old and was diagnosed with leukemia 30 days ago. He does not have Down’s syndrome, but I thought I could post something as I really took a step back and was np hit by your 30 comments.
    Everyone of them I have experienced so far, but I guess I couldn’t really put them I to words. Well you did, and quite nicely I might add. I love the honesty of them. I feel all of them everyday. Ryan has 3.5 years of chemotherapy to go. He will be 10 when he is done.
    Puts wanted to tell you that your truthfulness struck a cord in me. It was a relief to see that others feel the same way I do. Thank you.

  52. Well, I really enjoyed reading this and I follow Noah and his family at least 10 times every day waiting eagerly for a post. I lost my beautiful Son Anthony to Leukemia (AML) in 2005 and I miss him so bad. My heart aches every day for him. I don’t know how to have the faith in God that you have but I’m trying. I prayed, bargained and hoped for him to live but he didn’t. I hurt so bad but seeing Noah helps a lot. Thank you for sharing him.

  53. I was the caregiver to my mom while she battled leukemia. I went through all of these things in different sense but I had an infant at the time and I held him so tight during those times. I can’t imagine the terror y’all experienced today as a parent. It was awful as a daughter and caretaker.

    My mom finishes maintenance chemo in may and has been officially in remission for a year. Leukemia taught me so many things. We are blessed to have beat it and we hold life so dearly these days.

    God knows how many days we have left and how many days our children have left and I can’t help but fall on my face when I realize He’s got this.

  54. fran MacMullett says:

    I love ever post that you post. My daughter is 35 years old. She has DS. I was we had half the information that is out there now,.she is a happy a healthy young lady. She loves sports.thank God for Special Olympics…she does it all.keep up the good work with Noah.keep up all the posts I love reading them and God bless your family.love our family…
    The MacMullett family.

  55. I don’t have the words to tell you how much your post touched my heart . Thank you for sharing the heartfelt truth about being a parent and reminding us who God is. God bless you and your family

  56. Cancer sucks. No other way to describe it. It just plain sucks. Our son, Tyler, was diagnosed with leukemia when he was not quite four. Tyler has Down syndrome, Klinefelter’s syndrome, Hirschsprung’s disease with colostomy and Epilepsy. He had already been through so much in his short life and we were blindsided by his leukemia diagnosis. He went from being happy and healthy to incredibly ill within about a week. It was heartbreaking to watch him decline so rapidly and know that we were powerless to stop it.

    Ty went through two and a half years of treatment and has been in remission for four years. We are thankful every single day that the cancer is gone. We are terrified every single day that it will return. We’ve had a couple of scares and thought it was back. Thankfully, so far, they’ve just been scares.

    I can totally, 100% relate to your list of things you learned. It’s amazing how quickly you realize that God is in control. So many times over the years I’ve had to remind myself of that and allow Him to lead me.

    Sure enjoy reading about Noah and your beautiful family! Thanks for sharing your lives with all of us!

  57. I just wanted to say I love your blog! I am new and just discovered it a couple weeks ago.

    My son is four now but last year went through a similar experience. He does not have DS but did have a petechia rash on his ears for no reason. As a baby he would get it on his face from crying or vomiting. With in on the ears, Our doctor and the children’s hospital ran a full blood work up and thank God all was well. The doctor thinks he is rough on his ears and has sensitive light skin. I know the list you ran through and I am so happy all is good with Noah!

    I have to admit I hate petechia, it scares me every time it pops up! I hate the idea of cancer too! But God truly has us all in his graceful hands! I have to keep telling myself that too! I love the blog and seeing Noah’s photos!

  58. It’sa pity you don’t have a donate button! I’d most certainly donate to this superb blog!
    I guess for now i’ll settle for bookmarking and adding your RSS feed to my Google account.

    I look forward to fresh updates and will share this blog with my
    Facebook group. Talk soon!

  59. I found this post while looking up petechia. My three year old had a case of petechia show up on his arm today. When he showed it to me, I knew what it was but was hoping his ped would tell me I was crazy. He didn’t tbojgh and agreed it was petechia and sent us off for a stat cbc. Luckily 2 and a half hours later we got the call that the cbc was normal… Platelets were “perfect”.
    I had those same conversations with God today. My hard struggle is trusting His will when I am such a control freak!

  60. Nick Budris says:

    Great article. I found this as I am waiting for a call. They are thinking my 3 year old son might have lymphoma.

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