Our sweet little Rowan has had a tough go with his health the last few weeks. We spent Labor Day weekend at my sister's house picking up our new puppy and had a great time. Unfortunately, during the following week I started noticing some lots of bruises on Rowan. He had taken some falls and such as a new walker on our hard floors so some of them were explainable but it just seemed like he had more than he should and in unusual places given all these falls. He was acting like his happy self so I brushed it aside for a day or two but it with every diaper change it seemed like I found 5 new bruises. They were everywhere - in addition to his legs and arms there were some on his head, face, belly, back, sides, and even his feet! I also started noticing some red spots all over his belly and face that looked like blood vessels had burst under his skin. I knew something wasn't right at this point so I called the doctor on Saturday. They were worried about his platelets being low so they told us to go to the ER. We weren't thrilled at the thought of that, but it was the only way to get his blood tested and get answers quick. Of course before we left for the ER he fell into the side of the armoir in the playroom and instantly had a big purple hematoma on his head and you could see the bursted blood vessels underneath. 😢 At this point we couldn't get out the door fast enough!
At the ER, we were helped right away and they had us put him in a gown and they put an IV in to do all the blood tests and it was just awful. He was beside himself on the hospital bed and it was so sad for us to see. Adam and I both lost it, despite how hard we were trying to keep it together. 😢 A friend came to pick up Maeve which was such a blessing and then we waited 45 minutes for results. Luckily Rowan was happy eating snacks at this point!
When the doctor came back, she told us that his platelets were indeed very very low. A normal level is 500,000 and he had less than 5,000 in his blood. She told us he would have to be admitted overnight and do more blood tests to figure out what was wrong. She also specifically said that he would be moving to the Hematology/Oncology floor with all the other kids that have cancer, but that that didn't mean he has cancer too. I never thought these words would ever have to come out of my mouth, but I replied "So he definitely doesn't have cancer right?" - all the bruising had immediately made me worry that he could have leukemia - and she responded "I can't say that for sure, but everything else in his blood looks like fine right now so I don't think so". That was reassuring, but I still couldn't help but pick up on the fact that there was a small chance it could be.
Since we knew we were staying overnight at this point, and since Rowan is a daddy's boy, we decided I should be the one to leave the hospital and take care of some stuff. As the mom, it was hard to not be there, but I knew Rowan would be happier with Daddy so I left the hospital to go home and get our dog and bring her and some stuff for Maeve to my friend that had Maeve with her. Bless Danica's heart for being so willing to take Maeve and our dog for the night! Luckily she loves puppies and has a daughter Maeve's age and they are best little buds so it was perfect. We felt so blessed to have that option and that she didn't hesitate to help! In all my driving, I had a lot of time to really let what was happening sink in and I lost it. Since we didn't have any real answers yet it was really hard to not think of the worst and how that would affect our family and day to day life! 🙁
I was hoping to make it back to the hospital before the Hematologist got to Adam with a diagnosis but I missed it. So Adam let me know what was going on and the Hematologist was pretty certain he had a blood disorder called Ideopathic Thrombocytopenic Purpura (ITP). Basically, this just means the immune system attacks the platelets and makes the child more prone to bruising and bleeding. They don't really know what causes it, but likely it can happen in response to a virus or infection. He was never sick that I knew of but who knows! ITP typically resolves on its own but it can take up to a year before levels are fully back to normal. Given his age and that he is a new walker prone to injuries from falling, the Hematologist strongly recommended treatment so we opted for that.
Once I got back to the hospital at 11:30pm Rowan was getting his vitals taken before starting the treatment. They had to put a clamp on his toe for that and every single time he just HATED it! Adam had rocked him to sleep and he had only been asleep for 10 minutes before they came in to take these vitals and it woke him up and he was so angry! I felt so bad for him that he had to deal with all this prodding while he was so tired and out of it. 😔😢 They gave up on getting his vitals since he wasn't cooperating and just decided they'd start treatment without doing so since he seemed fine. They let me take him out of his crib and rock him and he fell asleep instantly on me which was such a sweet moment for me since that has not happened in a long long time! I just gazed at his sad looking little body and face and just hoped he'd be okay sooner than later.
Soon after Adam took this picture the nurses came back in and decided to try his vitals again since he seemed to be sleeping so soundly on me at this point. Poor boy was worn out! It totally worked and then they started his treatment - he got IVIG which is immunoglobulin through an IV. It was slowly administered for 4 hours while he slept and he slept through it all! We were so grateful. We got fairly good sleep too, except I did wake up any time they'd come in to check vitals during those 4 hours and also occasionally I'd hear other babies crying which was so sad. Overall though we felt rested in the morning and Rowan woke up happy! When they took out his IV before they let us leave it just bled and bled. It took probably 10 minutes before the nurse could stop applying pressure and it had clotted enough. Poor boy! We got discharged at 10:30am and were happy to be able to go pick up Maeve and Zoey and go home. Our next follow up would be at the cancer clinic in the hospital the following Thursday to check his counts again.
I couldn't help but still feel off that whole day. I was hoping the worst was behind us, but they did say sometimes the treatment doesn't work as well as expected and has to be done again. They also said he'd continue to bruise easily and such so I felt like I had to really watch him and be near him all the time.
My friend from Raleigh texted me on Monday and asked me if she and her hubby and baby could come stay at our house if they had to evacuate because of Hurricane Florence. I felt like company would actually be nice since we love these friends and so I happily told her they could come. They ended up coming on Wednesday morning and it was such a blessing for us. Now that more time has passed and we've gotten more news, I see that it was no small coincidence and a tender mercy that this Hurricane and health issue for Rowan happened at the same time! Her husband loves to cook and wanted to cook every night for us and they helped with Maeve for Rowan's follow up appointment so I didn't have to drag her.
At his follow up appointment last Thursday I was expecting to hear good news since the week had been uneventful and I wasn't seeing too many new bruises. Unfortunately, they got his counts and told me that his platelets had only bumped up to a 7 from a 5. This basically meant the treatment didn't work, because if it had, they would have been up to 50-100. His neutrophil white blood cell count was also low now too, which could be a fluke or related to infection but it made the Hematologist wonder if the ITP diagnosis was correct. She said she was still 95% sure but she said that she'd want to check him again in a week and if both the platelets and white blood cells were still low she'd think it could be leukemia instead. She followed that up with "I'm not trying to scare you, I just want to be transparent - I still am very confident it's not that, I just want you to know everything I'm thinking" and I couldn't help but start crying. I kinda couldn't believe I was sitting in a room having this kind of conversation with someone about my innocent oblivious little 1 year old. 😢 She really was so nice though and did put me at ease as best she could! I left the office being told to just watch and wait because she didn't want to do any further treatment without seeing what would happen with the numbers in one more week (which brings us to today). This is why it was a such a blessing to have our friends with us through this time as a distraction. They were so helpful and helped pass the time much quicker!
Rowan did fine this past week, but on Tuesday he took a really super long nap and woke up from it with blood on his sheets. I took his binky out of his mouth and there was blood around his mouth. Considering this was spontaneous bleeding, I called the doc right away and they said to just watch him and if it happened again to call and they'd probably want him to come in on Wednesday instead to get counts. On Wednesday morning, there was more blood on his sheets when I got him out of his crib and a little bit of blood beside his mouth and a new bruise on his lip. I looked inside his mouth and saw a couple little blood blisters. I called the doc again and the nurse said she'd page the doctor to call me but that she'd probably want me to come in that day. I waited ALL day and did not ever get a call back. I was so frustrated and had called to check in and see what was going on and they just told me there was no telling what she was in the middle of but she'd call me as soon as she could. I kinda couldn't believe she didn't call me before the office closed and wondering if the page even went through. I knew Rowan wasn't in serious danger or anything so I just figured it wouldn't hurt to wait till the next day to recheck everything.
This morning, the doctor called and apologized profusely because for some reason she didn't get any of her pages from the day before. Oh well! I was at least glad to know that was what happened and that she didn't just forget to call me or something.
From the minute the doctor saw him at his appointment today, she knew his platelets were still really low. This didn't surprise me either, given the spontaneous bleeding that had happened this week that hadn't happened in the previous weeks. He was also still getting a lot of new bruises. She told me she wanted to see his counts and look at his blood before ultimately deciding what to do next, but it would likely be steroid treatment. When she came back in after looking at his blood and his counts, she told me that the white blood cell counts were back to normal and that everything about his blood pointed to an ITP diagnosis so she was confident that's what we are for sure dealing with! I was so relieved to hear this. Unfortunately though, this means we are stuck doing the steroid treatment, which she hates to prescribe unless she really has to. It makes all patients very irritable, angry, and starving the entire time they are on it. Doing nothing though could ultimately result in him having bleeding in his brain, so this is really our only option at this point since the IVIG didn't work. Any other treatment option would have even more aggressive side effects. So starting tomorrow morning, he will be on this steroid treatment for 5 days and we are hoping it works. It should clear up the bruising and bleeding, but still may take a while for his platelets to bounce back up. I feel so sad for him that he will have to suffer through this, but I will gladly take 5 days of misery over a serious long term battle. Both times I stepped foot into that cancer clinic my heart just sank walking past the little kids that looked lifeless sitting getting their treatments. I just can't imagine the pain and heartache I would feel if that was my little 1 year old boy! My mom will be coming to help tomorrow night, which we are very grateful for, so we are counting are blessings right now and know that the big man upstairs is watching over Rowan and all of us. We know sweet Rowan will be a fighter through all of this!! For now, I am praying and clinging onto this happy smiling little face below. ❤️🙏
