Shock and Awful
In support of
Ronan and family
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Ronan and family
I've been sitting here trying to figure out how I write all this down, how I tell everyone I haven't been able to tell more personally, how to put into words what it still hurts to say out loud.
I'm at a bit of loss because there just isn't a good way to say that our 6 year old little boy has been diagnosed with cancer. It's unthinkable and writing it still puts a huge lump in my throat and tears in my eyes. It still feels a little bit like a bad dream I'd really like to wake up from. But here we are. Our sweet and sassy, funny, quirky, airplane loving, too smart for his own good Ronan Bug has been diagnosed with B Cell Acute Lymphoblastic Leukemia. He has a port in his chest (placed yesterday) so that he can receive chemotherapy and not be treated like a human pincushion for all the labs they are collecting every 8 hours. He got his first dose tonight.
For the past almost 7 weeks, we have been worried about Ronan. He has been a little pale, really tired with pretty low energy, and then his belly started to get noticably bigger. When it was just pale and tired, we had his annual renal labs drawn early to make sure it was nothing kidney related, and because I suspected anemia. Kidneys looked good, though he was a little anemic. We scheduled a follow-up with his pediatrician, picked the multivitamin that had a little more iron than the one he'd previously been taking, and tried to increase the iron in his diet a bit, though his appetite was a little puny. When I noticed his belly seemed bigger, it was a a day or two before his pediatrician appointment. We thought maybe it was constipation but that didn't seem to be the case.
Our pediatrician was concerned too. She sent us in for repeat labs, some new labs, and a chest x-ray. Labs showed a little bit worse anemia, and a lower white count. The xray seemed to show an enlarged spleen as the culprit for his belly looking big. Because of that, she then sent us in for a full abdominal ultrasound and an abdominal xray. They both showed an enlarged spleen, and slightly enlarged liver. Then, the mono antibody test resulted as positive.
Our ped consulted with hematology on everything that was going on, and it was determined that everything was likely related to mono. We needed to be mindful of activities that could injure the enlarged spleen until it shrank back down, which could take a while. Ronan was supposed to continue going to school, though he stayed out of PE and recess was changed up. We were directed to let him rest as much as he seemed to need it.
Ronan seemed to be getting worse though, instead of better and I felt like his belly was bigger. I asked for repeat labs, which showed some more wacky cell counts. We were officially referred to hematology. For three days, I called to check on the referral. Even though it was marked urgent, it all takes a while and it was still in some stage of processing. On Friday afternoon, we decided we could not wait for the referral, and we came to the emergency room at the children's hospital.
Ronan had a bunch of labs and an MRI of his abdomen. After we'd been here and waiting for things to result, the child life specialist who had been working with us all night came back in and sat with Ronan. The nurse asked me to step out and took me next door where a doctor was waiting to talk to me. I knew immediatly that the big scary answer was the the answer and started to cry. Bryce was home with Jack and had to be on the phone for the worst minutes of our lives, hearing that they were very confident Ronan had a leukemia, cancer that develops in bone marrow.
Over the next two days, we learned more information about the kind of leukemia based on bone marrow aspirations. We learned that there was no sign of disease in the spinal fluid which is very good, but a little chemo was put in there anyway to be protective and prevent sneaky hiding cells. We have been told that there is nothing we could have done to prevent this, that nothing we did caused this, and that we couldn't have really caught it earlier than we did. Ronan's labs changed drastically over the course of the last six weeks. He got here when he needed to. They feel confident he can get through this. ALL has a very good prognosis. These are all things we needed to hear.
We will be in-patient for about he next week. Normally it would only be about 5 days but they are being a bit more cautious with this for Ronan because of his kidneys. After that, they'd like us to be closer to here than we would be at home, for at least 30 days. Startng today, we will have a spot at Ronald McDonald House for the duration of this first phase, which we are so grateful for. It will give us a home base close by and allow Jack to stay up here, us to more easily trade off, and a safe place to be when Ronan is able to discharge that is so close.
Many kids are readmitted for fever and neutropneia at some point in this first phase. He will be very vulnerable to infection and we'll be doing all we can to protect him. We really like Ronan's team so far. We know he's going to get through this. We wish more than anything he didn't have to. He is so incredibly tough and is taking all of this with more grace than most adults could.
Many kids are readmitted for fever and neutropneia at some point in this first phase. He will be very vulnerable to infection and we'll be doing all we can to protect him. We really like Ronan's team so far. We know he's going to get through this. We wish more than anything he didn't have to. He is so incredibly tough and is taking all of this with more grace than most adults could.
We have already been so fortunate with our families and closest friends doing everything they can to support us. There is also a lot of resources here at the hospital. This is going to be a long road and though it doesn't always feel easy to accept help, I know we're going to need it. For now, please send every strong and healing wish to our Ronan bug. I will keep up with posts as best I can on here to keep everyone informed.
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