A Moment of Truth for Mac (and us)

Posted on April 23, 2015 by The Orange Rhino

Dearest Orange Rhinos,

Thank you so much for your loving comments, posts and emails a few weeks back when I shared about Mac’s health situation. My sincerest apologies for not replying until now, and even now replying via a large blog post. It might sound weird but responding to you all after I posted made the situation feel even a little more real and well, it had been feeling surreal which believe it or not feels better than real!

But alas, I did move into the land of reality that Tuesday, April 7^th when my husband and I brought Mac to see the Hematologist. I knew where we were going – to the Children’s Hospital section of the local hospital. I had been there many a times before with Mac and my other boys – to see the Neurologist, the Rheumatologist, the Urologist and several other pediatric specialists. I assumed we would sit with Mac in the normal waiting room, watching the fish and staring up at the wicked cool painting on the ceiling. I assumed wrong. You see, our doctor is also a pediatric Oncologist so we were sent to the special waiting room – the one that is secluded and infinitely more sterile (as it should be.)

Reality hit – along with tears in my eyes and sweat in my palms – the minute I opened the door and saw two children who clearly were currently undergoing chemotherapy. My heart broke and fell into a thousand little pieces; and not just because of my fear for my son, but for my sadness and fear for these beautiful children who stood before us, laughing and smiling despite of their Cancer. Walking into a pediatric cancer waiting room was nothing short of a terrifying experience, but I will leave it at that as you do not have to feel what I did. No one should.

Moving right along….The receptionist asked for our names and I truly felt like I was going to vomit as I said Mac’s name. “Mac is here to see Dr. H,” (you know the guy who treats rare blood diseases and pediatric cancer I thought to myself; you know the guy who is going to tell me if it is potentially as bad as I fear; you know the guy who is going to tell me if we need to do all the tests that I had been led to believe might happen and that I knew to ask about, like a bone marrow test.)

We waited a whopping five minutes (an A+ to that doctor’s office for being on time) to see the doctor, although in truth, I had been waiting since the previous Thursday at about 3:15 when I made the appointment. Yep, I had been waiting days to meet the doctor and move on to the next part of this long and tiresome journey. Dr. H was quite nice and after listening to our story and reviewing the notes, he finally said,

“Well, I don’t think he has Leukemia.”

He continued,

“Many parents come to see me and that is there assumption. But I assure you, I see no signs of Leukemia.”

He read my mind that I needed more proof and he went through all the data, showing me what was normal in the testing and what we would see if it were Leukemia. I of course felt relieved, but I’ll readily admit, I wasn’t entirely relieved because while I fear(ed?) Cancer, I never feared Leukemia. He went on to share his hypothesis of what was going on.

“I don’t see many red flags, and in fact, if it were not for Mac’s fevers, bruising and seizures, I would tell you not to worry one bit. But those factors do draw my attention. You have done a great job getting the proper testing done to date given the facts and I believe that Mac’s low white blood count is simply his norm – that when it looked normal, it was actually elevated. I do not think he has cyclic neutropenia. I think and hope that when he gets a fever again, that his numbers will go up. This will prove my theory and that we truly do not have to worry or do more elaborate testing; just a blood test if and when he is sick again.”

Not gonna lie, I know I should have felt truly relieved, like jump for joy relieved, but I wasn’t. I felt awful about myself that I didn’t feel more joyous (I had just gotten better news than many patients in that office) but the pit in my stomach just wasn’t satisfied. Fortunately, my husband made me feel better by admitting that he too felt relieved, but not. All we had was a theory and to boot, a theory that was ENTIRELY opposite of what another equally experienced Hematologist had said. Who should we trust? Could we truly stop worrying? Was it really okay? Or were we missing something? I just wanted a solid, completely and utterly 100% definitive answer as to what was going on with Mac.

I just wanted to know if I could breathe again; if I could finally exhale.
I just wanted to know if I could finally start telling myself, “It will be okay.”
I just wanted to know if I could stop desperately fearing another horrific seizure.

And well, while I was close to being able to do all those things, I couldn’t; that was to say until last Wednesday when Mac spiked a wicked high temperature.

I knew the drill – the Hematologist had told us to immediately get blood work if Mac got sick again. The bad news is that Mac was really hit hard this time. As soon as he spiked (it happens out of no where it seems) he was lethargic and out. He couldn’t stay awake and even collapsed onto the floor of the hospital waiting room during registration. In fact, he was so out of it that during his blood work, he slept. The poor thing.

Awoken by my flash….Although sick, he looked so peaceful and snuggled up (and I record fevers on my phone with dated pictures.)

This kid is a champ – no tears when he gets his blood drawn, even on days when he is wide awake. Love him so much.

Not gonna lie – my heart was racing with major, major fear. I knew what this test meant: either the doctor was right and we could worry much less OR the doctor was wrong and we needed to worry more.

It was the moment of truth.

The good news is that we are fortunate enough to be able to get blood work done at the local hospital and that our Hematologist works there so we were able to immediately get in and get results within forty five minutes. As soon as the most incredible phlebotomist took Mac’s blood (she rocks and we love her and are so grateful for her skills…and lollipops!) we went over to our pediatrician’s for a check up (protocol with Mac’s high fevers.) Now, our pediatrician is also connected to the hospital and has access to the blood work. Without telling me that he was checking to see if it was ready (it had been a mere twenty minutes), he pulled up the results.

I wasn’t prepared for what he said…because I wasn’t expecting results so soon. I was totally caught off guard when he casually said to me,

“Well, his counts went up. Doctor H. was right. It doesn’t look like cyclic neutropenia and his immune/blood system is doing what it should. We can now focus on the other hypothesis of Periodic Fever Syndrome – which is a likely contender now.”

This is me last Thursday – just had to capture my happiness to share with my mommy and the sweetness that comes from a snuggle.

Folks, I almost dropped Mac at that point.
I finally exhaled.
I finally breathed, like really breathed.

The tears were yet to come because I was in such shock that after months of bad test results we FINALLY got good ones. Finally. Did I mention, finally?! Finally a test result that didn’t increase our worries but brought them down.

Last Wednesday was a good day. A really good day.

And now the tears come.

It was a really, really good day and I just feel so fortunate to have the pediatrician we do and the hospital we do. They have made this journey just a wee bit less painful and I am so grateful.

I am also grateful because that day our pediatrician witnessed what I have been witnessing for the last eight months – that Mac feels on fire, literally, at 99. Not 100.4 as all say is that proper fever threshold, but 99. We talked about it and a new theory, a life changing one, developed. We are hoping (time and mommy charting his temperature dependent) that Mac runs cool so that 99 for him is actually 101 ish. If this is true, then not only do we know he is getting fevers more than we thought (tough news, but helpful news) but also that I can treat fevers sooner before they get out of control and cause seizures. This is huge folks, huge. Like, mega huge.

I am trying to hold onto this newfound hope…despite the last few days.

Mac’s fever was pretty fierce and lasted four days. And although it has broke, he isn’t back to being himself. In fact, he has taken naps every day since last Wednesday, which isn’t his usual. Normally I would be ecstatic for the surprise naps (YEAH! Me time!) but they are alarming to me especially because he is falling asleep early in the day and staying asleep despite being completely uncomfortable. My husband and I have decided to wait until Friday to push for more blood work. I am hoping that tomorrow brings no naps; now who the heck would have ever thought a parent would wish that?! Ha!

I will continue to keep you posted and I am so hoping that my newfound hope will help me find my way back here, a place that I so miss being a part of on a more regular basis.

Much gratitude to you all for being here, for staying here, and for supporting us,

The Orange Rhino,
a.k.a. Mac’s (and James, Edward’s and Andrew’s) mom
a.k.a. Sheila
a.k.a. The Mom who still can’t believe she is hoping for no surprise naps tomorrow!

Why The Orange Rhino Has Been Silent

Posted on April 7, 2015 by The Orange Rhino

Dear All,

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 6^th.

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 4^th. November 5^th 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!