I have received so many wonderful emails wondering if all is all right as I have been ridiculously silent both on Facebook and on my Blog. Some of you have asked if I am pregnant. Nope, I am not! Some of you have asked if I am busy writing another book. Nope, I am not (but if I were…do tell what you would want it to be about!) And some of you have asked if I am simply done with being The Orange Rhino. Nope, I am not.
What I am doing, however, is surviving, just getting through each day.
The last five, well seven really, months have been an incredible emotional roller coaster ride for me – all leading up to today. If you recall, my baby, Mac (who is actually a big kid as he tells me and not a baby, but whatever, he is my baby in my mind!) had an absolutely horrific seizure in September. This wasn’t his first, but it was his first in one and a half years (we thought they were gone), and it was his first where he didn’t talk for two hours after (I truly thought I had lost him) and it was his first that impacted him longer than the seizure period (he started stuttering two weeks after and hasn’t really stopped, although speech therapy is helping.)
Little did I know that that seizure would mark the beginning of a long period of mommy feeling worried, sad, scared, and out right exhausted. You see, once that seizure ended, Mac had high fevers every two to three weeks and since high fevers seemed to be the cause of his seizures, every two to three weeks I was on high, high alert praying that he didn’t have another seizure, praying that he didn’t temporarily stop speaking again; praying that he speech wouldn’t worsen even more; praying that we wouldn’t be taking another ride in the ambulance to the Emergency Room. Luckily, he didn’t have another seizure…until November 6th.
But two days before that seizure, I was given yet another reason to worry.
My mommy gut said, “Enough is enough with these very frequent high fevers. Mac just can’t seem to get better and that isn’t right.” My doctor agreed and we did blood work. I have not once received a call from a doctor post blood work – until that day. I knew when my doctor called I needed to be concerned, and I was right. She walked me through the few items that concerned her and then taking my limited knowledge of the medical world I said,
“Do we need to be worried about Cancer?”
She replied, “Well, yes, it is on my mind. But it is the third item on my mind. The first is an autoimmune disease, the second is just bad luck, and then comes Cancer. But I really think it is an autoimmune disease.”
Needless to say, that didn’t comfort my husband or me so in addition to seeing a Rheumatologist for the autoimmune concerns, we also decided with our Pediatrician to get an ultrasound done to work to rule out Cancer. Fun times.
Are you still with me?! So many dates and facts. It all leads somewhere, I promise! Can you see why I am so exhausted?! So that was all on November 4th. November 5th we saw the Rheumatologist who ordered more blood work and who shared that she felt Mac might have Lupus, but most likely had Periodic Fever Syndrome. Mac’s brother Andrew had this so this wouldn’t be a surprise. That said, I point blank said to her,
“I have been through Periodic Fever. This truly doesn’t seem like it. I am telling you, something else is up and given that fevers cause his seizures, I really want to stop them.”
She agreed and said that in addition to her testing, that it was time to go back to the Neurologist. Well seeing as the pediatrician had said the same, and that Mac had a seizure the next day, I made the appointment stat (don’t ask why the delay, that’s another story!) Fast forward a few days. The neurologist ordered a brain MRI (to rule out a brain tumor given his seizures, the stuttering, and the blood work), a three-day seizure test, and a genetic test to see if he was in the early stages of pediatric epilepsy.
Now I will uber fast forward to all the results, the last of which we got a week before Christmas. It was a LONG six weeks mind you and all while I was supposed to be focused on my first book. I obviously wanted to do nothing else but get my son healthy but I will admit, I was and still am devastated at the timing as it was a lifelong dream to publish a book and it was so difficult to enjoy the time. (Don’t hate me for saying that; you know me, I am brutally honest.)
I did, however, temporarily enjoy the test results.
The genetic test came back negative. No epilepsy. Sweet.
The ultrasound came back negative. No cancer. Sweet.
The brain MRI came back negative. No tumor. Sweet.
The blood work came back negative. No lupus. Sweet.
So what was I left with? Lots of negatives, which was a positive, but still no answer.
Mac continued to have high fevers frequently but also developed hives and a concerning rash, both of which still come and go, mostly when he is sick. An allergist (also an immune system specialist and infectious disease specialist) ruled out allergies (yes, we got to see another doctor as the rash concerned both our pediatrician and rheumatologist who are working together phenomenally) and confirmed that his immune system had no apparent problems. He also confirmed that his last few months health wise were concerning but that all of Mac’s doctors had been very thorough in their work. I guess that was re-assuring, but again, I was left with no answers as to why Mac was so frequently getting sick!
That was February, about six weeks ago. While I still had no answers, Mac hadn’t had another seizure and his fevers were getting shorter and lower so I felt rest assured that he had just had bad luck getting sick this season. HA! Why should this mama start really okay with things?! A few weeks later I discovered that Mac’s back was covered in small, pin point bruises and that his legs were equally covered in bruises.
The pediatrician took one look and sent us for blood work stat. He normally isn’t worried but seeing as he called me the next morning at 7am to see if I had gone for blood work yet, I knew he was as worried as I was that internally bleeding or something was going on (I knew that type of bruising can be a sign of a blood disease as I was told to watch for it.) The good news: nothing major causing the bruising. Phew. The bad news? Mac’s white blood count was low. AGAIN. You see, a few weeks prior during his now standard blood work, his count appeared low, but barely. So we all ignored it. But this time it was much lower. Enter new potential diagnosis: Cyclic Neutropenia.
This is when white blood cells (which fight infection) drop every three weeks leaving one quite susceptible to getting sick. Now this, this would make a boatload of sense! We were told to check blood work again in three weeks. If the numbers went up, voila! most likely an accurate diagnosis. If they went down, well, add cancer to the mix again.
Three weeks passed last Thursday. I was a mess all day. Scared, scared, scared. I tried to write to you all then but couldn’t. I tried to write the night the results came back, but couldn’t. You see, the numbers dropped, again. Mac’s white blood cells have been dropping dramatically for almost two months now. My pediatrician confirmed what I knew weeks ago and had asked, but had been told, “not yet, not yet. We all still think periodic fever syndrome is probably the result and time will tell. If things change, then it will be hematologist time.” Well, things changed and it was hematologist time!
I cried when I called the office to make an appointment because you see, the hematologist is also an oncologist and calling a place where the phone answers, “The… Pediatric Oncology Department” is heart wrenching. Not a call I liked making one bit especially since I was told to get in ASAP. I spoke with the doctor who still feels that Cyclic Neutropenia is likely the cause but still, until I know that, I am surviving, getting through each day as best as I can until I know my worried mind and heart can rest.
We go to the doctor today.
It has been a long four days waiting for the appointment. I just want to know the next steps. I just want Mac to be healthy. I just want to stop worrying. I just want to hear it has all been bad luck. I just want to hear that all my fears, while well founded, have been proved wrong.
So this my dear friends is where I have been: worrying about one of the loves of my life. I have also been worrying greatly about another son who is struggling greatly. Getting through each day with him without losing my cool and with finding as much patience, empathy, love and forgiveness, truly leaves me with no energy left come the time all the boys are asleep. That said, at least I have enough energy to get through the days and giving my boys all that they need while they are awake. Being productive at night, doing the things I so long to do (eh hem, writing!) can wait. My boys are my priority. I know you all understand this and would equally tell me to not worry about not being present, but it’s important for me that you all know I haven’t left you, but that I am here, doing my best to be an Orange Rhino despite all the stress that life has thrown me.
Doing my best to do all of which an Orange Rhino must do to move forward: go one step, one moment at a time; find perspective; take care of myself so I can take care of others (hello sleep!); talk myself through tough moments; and laugh and connect with my boys as I can.
Stomp forward Orange Rhinos…stomp forward!