A Moment of Truth for Mac (and us)

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 7th 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.

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

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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.”

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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.

20150422_094004.jpgMac’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!

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32 thoughts on “A Moment of Truth for Mac (and us)

  1. This is the first time I am reading of your sweet son’s health. I follow the orange rhino posts (and am a struggling but determined orange rhino devotee) often but have been away and have not really caught up until recently . I am truly so saddened to hear how much you and family are having to go through. I hope that in the way you have helped so many mothers and fathers with your wonderful wisdom that this flood of support from Orange rhinos everywhere will in some way helpfull to you through this difficult time. I am so pleased to see the doctors are gaining a better understanding of what you are dealing with and I wish with all sincerity (and many prayers) that things improve. Much love philippa (twin mum and lover of all things orange)

  2. I could feel the emotion in your words and held my breath until I finished reading the post. Keep your head up, keeping you and your lil’ man in my thoughts and prayers. xo

  3. I am bawling. My youngest tried dying on us a couple times when he was a week old. I have been where you’re at and my heart is right alongside yours. My baby is fine now, but the reality is that you just feel like that other shoe is going to drop any moment. I would encourage you to make sure you’re talking to your doc and so is your husband for managing the anxiety that comes with having a medically tricky kid. Thank you for the love you have for your kids and your persistence, you’re doing a wonderful job. Your family is in my thoughts and I’m sending you some good energy. On the side, if your little has to do a bone marrow biopsy I can tell you that while not fun they’re also not scarring emotionally. I had one done when I was 8 or so and my platelets tanked. It turned out to be me spleen acting foolish. Hang in there and big hugs to you.

  4. I am just reading about your sons health, I myself and my family have been going through some tough doctor appointments with our oldest son. I send your family prayers that your sweet boy gets back to his self. My son will be going in for brain surgery a week from this Friday, so I completely understand the feeling of not being able to breathe, rest, or honestly do anything…..my tears come on a daily basis and I can’t wait for the day I wake up and all is great with the world and our beautiful children aren’t struggling…..I started following you a year or so ago and I love your blog. Please take care of yourself through this journey, as parents we tend to push ourselves aside, but I have learned that we have to stay strong for our babies when they can’t be. Sending love and prayers

  5. Dear Orange Rhino,

    My heart aches for you and your sweet little Mac. I’m glad it’s not cancer, but can only imagine the anxiety as you wonder about what is causing his fevers and his low white blood count. I would like to help, and I will pray for Mac and your whole family, but I also keep feeling that I’d like to offer to connect you with Teresa Harding, who has a somewhat similar story. Her 2-year-old niece Lacy was having daily seizures and the medications she was using to get them under control wiped her out, slurred her speech, made her unable to run and play. Finally, in desperation, they tried some pure essential oils, the seizures stopped, and Lacy recovered. Teresa has shared her story on YouTube, here: https://m.youtube.com/watch?v=rxn8rngi3n8. I’m acquainted with Teresa’s son and confident that he could connect you with Teresa, if at any time you feel like you’d like to talk with her. Meanwhile, God bless you and thanks for sharing your real life, heartaches and triumphs, with us.

  6. I am at work, with tears coming to my eyes for you and your family. For the relieve you must all be feeling and the same nervousness as well. You are a strong, brave bunch and hopefully everything works out for you all.

  7. Sheila- thank you for taking the time to update us as to Mac’s health. We have been praying for all of you and will continue to do so. We love you. Remember to take care of you!!!

  8. Oh, again, I am swept away by your story. I cannot imagine the fear and anticipation of that appointment! Your description of that feeling of relief but not quite resonated with me. We have had some health issues here at our own house, and I’ve actually had an ER doc chastise me when I let out an audible “oh, really?” when he told me all the tests came back showing nothing. He lectured me on all the people down the hall who much rather would have heard the words I did, but rather heard something much more menacing. So of course I felt guilty for wanting more answers, more reassurance. But I *know* that feeling. I hope and pray that you get your sweet boy’s health figured out. You are doing a great job speaking up for him and getting the answers and care that he needs. Hugs to you sweet momma!!

  9. Here’s hoping no naps and all prayers to you and Max and good news to continue to comes your way. Blessing to you and your family for your strength…..

  10. Wow! This sounds so similar to our families story with my son. If your son truly does have Periodic Fever Disorder then there is hope! Getting their tonsils removed actually eliminates symptoms is 70-80% of kids. We fought fevers from the time my son was 19 months old until he was 7. He was diagnosed with Juvenile Rheumatoid Arthritis after they eliminated cancer. He has 105 fevers every two weeks for 3 days. It was like a switch would turn them on and off. He was on immune suppressors and steroids. The steroids actually increased the timing of the fevers to every week. This was the breakthrough for our doctors. Seattle Children’s Hospital has an amazing pediatric Rheumatolgist team that cracked our case. Good luck to you!!!!

  11. I forgot to mention that a prescription antacid named cimitidine actually kept the fevers at bay until we could get the tonsils removed. Fever free for 2 years!!!

  12. I am crying happy and heart wrenching tears for you! It’s always great to hear all the things it’s not. But I know it’s just as hard when you have to keep pushing for them to figure out what it is. Big hugs and prayers for you guys! I hope they get this under control soon so you can go on living and hel

  13. We don’t know each other, but I’ve been reading your blog for a couple of years now and I just want you to know that you and your family are in my thoughts and I am sending lots of love and positive thoughts your way.

  14. First time here….my friend told me about your book so I cked out your website and came across your blog….I have literately fallen in love with your little angel. I’m deeply sadden for all you have been going through…I was at the dentist office reading your blog with tears rolling down my face….my heart pounding and hurting for you all and your angel. So I’m so glad to read the outcome and will continue to be praying for Mac’s health, his strength and healing in every aspect of his life….the same for you!!
    I will now begin my journey through the “Orange Rhino” my friend told me about, hoping I can be as victorious as you….I adore my children (girl 6 & boy 4) and want to provide for them a “yelling free” home….
    Thank you so much for sharing your life with us all!!

  15. 2 of my children fun a consisten 97.2 degree temp, as do I. It was a ERAL fight to get them to admit that running a “low grade” 99.8 was really terrible for them and like you were at 102/103 for a normal person.
    Keep up the good fight, mama. Nobody knows your kiddo like you (and now Dr. H! He sounds like a keeper). I always mourn a little when the good ones leave a practice or go onto retirement.

  16. So happy for you and your little man. I admire your strength throughout your ordeal and appreciate you sharing with us. I don’t know what I would do without my little guy and my sweet girl. Prayers for you and your family. :)

  17. I’ve just caught up on the previous post and this one…what a tough time for you all. So glad to hear you have been surrounded by such great doctors, and that you seem to be getting somewhere with results now. Sending you lots of love and light xox

  18. There is nothing scarier and more heartbreaking than being at the Children’s Hospital with all the “sick kids.” It takes a special kind of person to work there and make the anxious parents and kids feel more at ease. We have had such wonderful treatment at the Children’s Hospital in Pittsburgh – when my daughter had to have both of her knees aspirated and injected at age 8, they had a stuffed toy for her to hug, and the music therapist there to sing silly songs to her during the procedure. Everyone was so awesome! I’m so glad that you have had some of your worst fears relieved, but sending you hugs for the tense times to come while you finally get to the bottom of things with your son.

  19. My daughter had what was diagnosed with Periodic Fever Disease too, and it lasted about a year and then stopped as mysteriously as it had started. She would run fevers up to 106, which and for a week to 10 days on end. I hope it passes for your son too.

  20. Hi Sheila, It sounds like you’re worried about the naps as possibly being a bad thing. I would actually see them as a very good thing. He’s doing exactly what he needs do to get better and to get his strength back–which is to rest. I think that as adults we push ourselves and want everyone around us to keep going or to get back to normal as soon as possible. But he is wisely resting right now. It might be nice to take the opportunity to snuggle in with him for a little while! This whole thing must be absolutely exhausting. Take care!

  21. This brought tears to my eyes reading this – it was as if I had written it myself. We just went through this very same journey last year that you are going through now. My son was diagnosed in May 2015 with a periodic fever syndrome called PFAPA. I am so very sorry to hear you are going through this. I too was relieved to learn our son did not have leukemia or any other childhood cancers or diseases – he was tested for all of them. Waiting on the results was pure agony. We too had to meet with our specialists in the oncology department of our children’s hospital. My heart sank as we watched the other children in the waiting area knowing they were horribly sick with life threatening diseases/conditions. We spent four hours with our rheumatologist that day going over every fever episode and all his lab work done plus a thorough examination of our son. When in the end she confirmed our pediatrician’s suspected diagnosis of PFAPA…I cried my eyes out – tears of joy. My big concern was that my son would be one of those children in the waiting area and we would be frequenting the oncology department. I was so relieved to hear he just has “PFAPA” and he was going to be okay. Crazy because now that we have lived with PFAPA for more than a year I can honestly tell you it is no walk in the park…but he is alive. I am thankful but exhausted and confused all at the same time. Just when I think there are no more tears I manage to find more. Our son fevers every 12 days so twice a month…episodes last 4-7 days and he often gets as high as 106.1 (no seizures thank goodness). He has a lot of pain with them from his toes all the way up to his lower back, plus other random areas like his chin and fingers. He also gets headaches and horrible mouth ulcers a lot. He is an atypical case of PFAPA and we are pursuing genetic testing this summer. He had tonsils and adenoids removed last summer (research shows removal is 80% successful in curing PFAPA) – it did not cure him but his throat issues improved so we have no regrets. I have joined three facebook groups called PFAPA, PFAPA Child and AutoInflammatory Diseases-Rare But Not Alone and I would be lost without them. They are the only ones that truly get what you are going through. There is also a group called the Flying Lifeguards on facebook and they send out care packages for free to the children on their birthdays and also on rare disease day. I have learned so much from them. If I can help in any way please do not hesitate to contact me.

  22. I am so glad for your family that you are finally getting answers. I have been following you forever (trying not to yell!). I am glad you posted this. I just laid down with my little guy, again with a fever, went on Facebook and posted I wish I knew why he was getting fevers. Then I found your post. Now I have a new direction to look into.

  23. Hugs across the web-o-sphere!! Much love and peace to you and your brood. My son (4 and a half) and I just finished reading all the Today’s Tips in your book. He’s ready for me to yell less. So am I. Take care of yourself in all this!

  24. Thank you for being so honest about your journey with Mac. We are so sorry that you are having to go through all of this. You and your husband are doing a great job at being able to see past what Dr.’s say because you know your child so well. Keep up the good work! Just know that we are praying for him and your family.

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