My Last Few Days Of Hell! My Child, Our Story. (Cancer Mentioned.)

 

 

My Last Few Days Of Hell! My Child, Our Story. (Cancer Mentioned.)

5-2012

Sorry so long, but it’s gripping.

 

 

I had a terrifying experience over the last few days. So terrifying it almost makes me cry just thinking back on it. It’s about a parent’s worst nightmare, and a child’s greatest fight…cancer. 

 

 

The beginning

 

When my daughter woke up 3 days ago for school like any other normal day, she complained that her neck hurt to turn and felt stiff. I felt her around her neck and noticed there were some swollen glands. One side especially where it was hurting her most.

 

I’m a little on the bony side myself, as she is. And I had thought nothing much of it except that I to have woken up with a stiff neck after sleeping wrong, or had neck pain along with an enlarged lymph node before. She didn’t have a fever or any other signs of a cold, so I assured her she was going to be just fine and this has happened to me before and had proceeded to send her off to school.

 

Before she went we did say, ”If you are hurting later on at any point in the day, or just don’t feel good” because who knows, maybe she might be getting a cold I thought to myself. ”Just go to the nurse and tell them to call home and we’ll come pick you up.”

 

We never got such a call that day, but we did find out later on that the teacher had sent her to the nurse at some point during the day saying, ”She didn’t look so good.” After taking her temperature and it coming out normal she was sent back to class. Mikayla came home saying how she felt much better and even went to the neighbor’s house to play outside.

 

We did sort of notice her being harder to wake up in the morning for school lately, and she even fell asleep a couple of times during the evening hours watching T.V. Normal for some kids? Yes. For this child…well, we haven’t seen a nap from her since before she turned one year old.

 

 

My husband insisted that from playdates and activities that I had run her ragged. This was after the weekend where she spent the whole day at an amusement park, and then a day at the beach the next. But this is very normal for our lives. Maybe the exhaustion had caught up with her? She normally keeps up just fine and then some though. She was never the type who got worn out..EVER!

 

 

The rash

 

Later on that day we took her to dance as she said she was feeling up to it. I had changed her clothing and nothing ‘odd’ was there on her belly. Around 8 p.m. that night I noticed her itching herself just a little. She didn’t seem uncomfortable at this point. I pulled off her shirt to dress her in her pajamas and saw her belly was broken out pretty badly. What it was I didn’t know, so I shared a photo on Facebook, but first called to my husband.

 

She hadn’t come into contact with any poison ivy, with us anyway. Plus, I get that stuff so easily and have seen it enough to be pretty sure it was not that. But you just can’t ever be 100% sure. I told her to not touch the babies in case it was something contagious. I felt her neck again. The glands, especially the left one was quite enlarged and tender.

 

Though that didn’t alarm me at the time really, the rash was sudden and was an annoyance so I said to myself that maybe we shouldn’t wait until morning and just get it checked out that night so maybe they could give her something for it in case God forbid it was to spread during the night. Then you get stuck. I searched online. There are a zillion different rashes in the world and a zillion different causes. Better to go and get something to ease any itch and discomfort sooner than later.

 

Without flash

 

 

With flash

(This is very mild compared to what happened later on that night.) 

 

I was forced to stay at home during the doctor visit because nobody was able to watch the kids. I got a lot of answers on Facebook that it looked very much like a food allergy. I couldn’t imagine that because there was never a time in her life that she had an allergic reaction to anything edible or non-edible. Much like her mama she has always been allergy-free.

 

I was told by a Facebook friend that that could change at any time in life. I never knew that. I went through her menu over the past day and nothing I could think of could trigger an allergic reaction. It was just stuff she normally ingested most every day. It was hard to imagine it. My brains were fried trying to figure it all out as I waited for answers.

 

I wasn’t truly alarmed by the rash., though I did feel badly for her itchiness. I certainly didn’t expect any bad news to come that night. I waited up as late as possible, called hubby’s cell phone which went straight to voicemail, and still towards midnight he hadn’t arrived back home. I figured it must have been busy there. Then I had fallen to sleep. A shocker was soon to come that I could never have been prepared for.

 

Me and my BFF on New Year’s Day.

 

 

The shocking, likely diagnosis

 

 I woke at 2:30 am when I heard my husband almost pacing around me. He wasn’t acting quite right. ”Go back to sleep,” he insisted. ”No, tell me what happened with Mikayla. Is her rash feeling better?” ”It’s an allergic reaction, now go back to sleep. I’m stressed.” ”Stressed about what?” ”I’m very tired is all. Go back to bed, it’s late.”

 

The way he was talking, acting. The way he had left a note saying, ”Mikayla is staying home tomorrow” meaning no school was odd to me. There was no love pook. It wasn’t one of his usual notes. No I love you. No explanation of the doctor visit. I knocked on the bathroom door where he was now inside of. I worry like crazy, as I am a chronic over-thinker and worrier by nature so I wasn’t liking how he was leaving things off with me 3 a.m. or not. He just didn’t seem normal.

 

He comes out and I attempt to grill him again. ”It’s just an allergic reaction.” I thought to myself most of my Facebook friends were right, but a reaction to what? He didn’t answer. He couldn’t answer. Then again he said, ”I’m stressed, go to sleep. I’m tired. I have been up all night.” Then he retreated into the bedroom. I literally sat by the T.V. staring blankly. My mind racing with only bad things. I again posted on Facebook.

 

I know usually my mind wanders to these worst case scenarios and I scare myself silly with things that never come to pass. At 3:30 a.m. I googled swollen lymph nodes and rashes. When I happened upon the big ‘C’ word, as I call it because I hate that word with a vengeance, as most people do. It said that swollen lymph nodes are rarely related to cancer. I stopped reading there, or I’d never relax.

 

Most enlarged nodes are normal and can indicate a virus in the body. Even just a simple cold. Seeing rare, and that was of course the worst thing I could have ever imagine was that nasty ‘C’ word, I ended up going back to bed for about an hour and 1/2, then I was up for the day. I let that ‘C’ word slip out of my mind. Then hub woke up a couple of hours later, if that.

 

I grilled the man again and insisted he tell me about the visit from start to finish. What he said was shocking. Beyond shocking. I haven’t seen this man cry in eons, but he started bawling. ”The doctor had checked Mikayla’s lymph nodes and looked stone-faced”, he said. ”Then he checked the lymph nodes all around her body. Ones that I never even knew existed. All were swollen. Greatly swollen.”

 

He felt her stomach and in front of Mikayla told my husband that her liver and spleen were enlarged. My daughter had been tensing up her muscles, so hubby asked the doctor to retry his exam on her organs and then he recanted that part of his story. Hub was relieved. Then he was called outside by the P.M. center doctor.

 

 What happened next was something no one could have expected. And if you ask me or anyone quite frankly, it was completely out of line, but upon hearing this I’m glad I was not there because I would never have been able to hold back my emotions enough to not terrify my young daughter to bits & pieces.

 

He said to my husband, ”I have children come here day in and day out. I feel swollen glands all the time..but not like your daughters. All of her nodes are greatly enlarged. This is indicative of some kind of cancer. I’m not sure which type it is, we need to wait for the tests to all come back which could be up to a few days to be certain. It could be Leukemia, Lymphoma….” My husband went numb. His heart sunk so low he nearly fell and hit the floor as I surely would have if I was there.

 

 He cried out like a baby as the doctor said he was ordering a chest x-ray to check for lymph nodes around the lungs and heart. Hubby was gone by then. How could he pull himself together and go back into that room to see Mikayla? After a bit of time somehow he was able to do just that for her sake, but he was dying inside.

 

His father had numerous cancers. He died a very slow and painful death. He started with illnesses at the age of only 32, and was sick until the day of his death at 73. The ‘C’ word got him in the end. I never met the man but the stories I have heard of him was that he was a wonderful man who suffered so horribly in this life.

 

Then, when I did know my husband, I of course lost a son after a long battle himself, and I have never been able to come close to fathoming raising then losing another child. I couldn’t fathom myself surviving the 1st but somehow God saw me through it.. but never again. NEVE!. I couldn’t do it. I’m sure this crossed his mind. And then he thought to his cousin. 38 years old, two small children. One week he was fine, went to the doctor, found out her had Lymphoma and it had spread everywhere. He was gone the very next week.

 

I’m sure the thought of relaying this news to me after losing my son was weighing heavily on his mind. I think a lot of things were running through his mind. He said later on that he was never so terrified in his life. I know that feeling. I lived that nightmare. Thinking you have a healthy child and one day that all changes in an instant. It’s he most incomprehensible moment in anyone’s entire lifetime.

 

My eyes filled up with tears as he shared the story of the night before, and our precious little girl. He told me it took several xanax to get himself to the point of being able to walk in that door and not scare our daughter to death. I would have needed 10 and I still don’t think it would’ve worked. I felt a panic attack coming on in my body as he continued the story. There was a twist here. Was it something to hold on to or not?

 

He suddenly became enraged as the story reared onward. Not at me, but at the doctor. The doctor said all of this without any test results yet. He basically diagnosed our daughter with a form of cancer without the chest x-ray coming back, nor any of the blood work. This was not proper AT ALL, and if I could get my hands on this guy you just don’t even want to know. But this is how the rest of the visit went down.

 

After nearly two hours and a chest x-ray later, not to mention some of the blood work coming back, my husband was then called back out the door. The doctor seemed a tad more light-hearted, my husband described. ”The chest X-ray was clear. That is a very positive thing.”

 

”Also, her white blood cell count is slightly elevated, but not sky high like it would be if say she had Leukemia.” My husband replies, ”So, does that mean that everything that you said no longer applies?” I hold on to his words with some hope in my heart. ”WELL, WHAT DID HE SAY? WAS HE WRONG? WAS MY BABY FOR SURE CANCER-FREE?”

 

”He didn’t say that.” My heart sunk again. Lower than the once mighty titanic. He said, ”This rules out Leukemia. It still could very possibly be another form of cancer. I don’t see your daughter regularly, so I insist that you go and see her regular doctor tomorrow to follow up. The rest of the bloods will come in within 3 days and we’ll send them over to him.” (Meaning our doctor’s office.)

 

So basically he gave some real hope and took some of it back, but he did seem a little less serious and stone-faced, if that meant anything. He did deserve a big punch in the face for making a diagnosis without all the tests back. Even after the x-ray and preliminary bloods, the word cancer should never have been uttered, most especially prior.

 

Those hours and the day to follow took 20 years off of his life, and then hearing this and worrying my head off, took at least that much off of mine. Again, I can’t imagine having been there. I was in such a place in the past, and I could never imagine being there ever again.

 

I had the most awful thoughts that morning and afternoon as we eagerly yet frighteningly awaited our appointment. What was to come for my baby? Was I going to be forced to possibly bury another child? MY HEAD SPUN SO FAST I couldn’t see straight. I cried and cried. I called, texted, emailed everybody I know just looking for some support and a glimmer of hope. Of course, again I went to Facebook. I poured my guts out with terror in my words. I was begging for prayers from all. Would God hear them?

 

The day of this horrendous news, only hours beforehand…all had seemed to be fine.

 

 

The Next Day Dr. Appointment. Was the diagnosis correct? Might my baby be dying?

 

I knew I couldn’t look at Mikayla prior to the appointment. I had needed some tranquilizer help myself, but I’m sure most would if they had them available in such a case as this. I don’t think anybody could blame me. I couldn’t fall apart in front of her, so I refrained as to not scare her to death. A loose cannon is what I referred to my emotions as that day. I couldn’t hide them.

 

Then at the time of her  morning appointment, I came downstairs and saw my child. She was so hard to look at. She looked tired yet beautiful. My little baby. Healthy the day prior, possibly terminal the next day. It was awful. No words can begin to describe my inward hell and horrendous thoughts.

 

It was time to go. Mikayla told me in the car about the 6 lollipops she had been given the night before for being 6 years old. And all about the nice lady who had taken her blood. ”It didn’t hurt so bad mommy.” ”Good baby. Let’s go and see Dr. Andy now, ok? Make sure you are healthy as a horse.” The tears wanted to fall but I didn’t allow them. I needed to be strong for her, but I was on the verge despite the tranquilizer. Again I prayed.

 

 The ride to the doctor seemed endless. Was this it? Was our lives about the change forever? Emotions were beyond running high as we pulled into the parking lot and then entered the door of the building. My heart in my throat. God couldn’t do this to me. He knows what I have been through. He couldn’t do this to me. Not again..right? And so Mikayla’s name was called and into the little office we went and we waited. My pulse was racing as I smiled at her and said to myself, ”No way! That smile isn’t going anywhere. It just can’t!”

 

The doctor came into the room with his normal, tender attitude. I love his bedside manner. I asked hub to take him into the hallway to fill him in on what happened the night before. He was appalled at what the doctor had said with such certainty without even the tests to back it up with. ”Unconscionable,” he replied. I could not have agreed more.

 

He was faxed over the preliminary blood work that was in, and took a look at Mikayla then that. I did tell hubby to also warn him mama is a lose cannon so please go easy. I guess the ‘C’ word can never be said easily, so I tried to mentally prep myself as best I could, but still I couldn’t..if that makes any sense.

 

He agreed her lymph nodes were swollen. The rest of her looked good. He took a look at the paper. He said the white blood cell counts were not extremely elevated. The red count was fine, and platelet count fine. With the ‘C’ word those things would be off, and far more off than the one that was. This was all of the same info. the doctor had the night before.

 

 I thought maybe this a-hole was a 22 year old rookie or something, but when my hubby said he was like 45-50 I got even more disheartened. But the numbers did not indicate cancer to him. Of course, all of the blood work did not come back yet, but he flashed me a very confident smile. My muscles finally relaxed. It was a virus he said, and prescribed an antibiotic. We weren’t sure what virus it was, but we’d take it!

 

 

The reality vs. an ugly, still unexplained twist

 

Later on the phone rang and it was the P.M. center saying they had the results of some of the other blood work back, please call. Again, I felt the bumps on my arms stand on end because this could  show something more. I’ve been in situations where doctors were wrong so I was chomping at the bit and dared not pick up the phone. I waited for my husband to come home and call back a 1/2 hour later. I hoovered over his shoulder. Towards the end of the call he flashed me a thumbs up. THANK GOD!

 

Then when he got off the phone the real diagnosis now made sense against her symptoms minus the rash and swelling. They never saw that severe of a rash or any lip swelling with what we were told was the cause of the lymph node swelling. They said this was the best news we could have gotten, but maybe a tad shocking to me for a 6 year old. Mononucleosis. I always heard of it as the ‘kissing disease’. I asked her who she had been kissing, ha ha.

 

I know I always share drinks with her, and I know on occasion she sips, or her friend inadvertently sips from her cup during a playdate, so I was like EEK! I’m mostly concerned for the twins but it seems like when real young the disease is quite minor compared to the teenage years, and is very rare in adults. 95% of us grown ups have already had it without knowing, and became immune to Mono by 35. (You learn something new every day.)

 

I am having a lot of sympathy symptoms for her though. I’ve been so tired. 3 cups of strong coffee by 10 A.M. and I’m still dead to the world. Not very usual for me. She’s itchy like crazy, and when she is.. I become so to. Seems like I have percentages on my side, no? With Allie and her Eczema that no longer seems to be present, I felt itchy for her as well. A mother’s love runs skin deep & beyond.

 

Well, the night we got the full blood results we were surprised, but yet very relieved. The two sets of symptoms can easily mimic each other and I loathed that doctor more than ever for scaring us to absolute death! Then that night something strange happened. The unexplained rash started to appear again.

 

This time it quickly went from nothing much to engulfing her entire body within seemingly minutes. Then her face got bumpy and lips got swollen before our very eyes. Her eyelids quickly followed. She was screaming from the itchy pain. She was not eating anything at the time and had nothing but her usual pasta for dinner so nothing would explain it. Bizarre? You bet ya. Scary? Judge for yourself.

 

My normal Mickey

 

 

Mickey the night before last. She was nearly unrecognizable.

It got worse my hub said, as again I had to stay home with my other kids.

 

Luckily, for this doctor I did not come along because I would have kicked him in his nuts.. (pardon my french). If nuts truly is even a bad word. I got another word but I’lll keep it to myself. Lucky hub had to get face to face with him again at the P.M. center once more. An apology for alarming us would have been nice, but nope. Her appearance did alarm them however, and I must have called hub 25 times during the 4 hours she was there to keep tabs on what was going on. At least this time he answered.

 

They gave her a liquid steroid, a large dose of Benadryl, and an EPI shot. They watched her for a couple of hours thereafter to make sure she reacted well to this combination of drugs. Normally, this would have frightened me to bits because I’m the type that turns away and goes nuts when my kids just get their regular shots, But compared to cancer, at that moment, it seemed just soo much better. But still the doctor, us, we are all stumped as to what exactly is causing this.

 

Hub told them he’s been working on the house could it be a, b, or c, and they said highly unlikely. Seems like a food allergy, but nothing has changed! We were given a script for epi pens for home which I’m hoping we won’t ever have to use. And she really wanted to return to school today, so she did with a note to the teacher in her backpack and a call into the nurse about the allergy thing.

 

Tomorrow she has an allergist appointment after school. (Today now. I didn’t get to finish this post yesterday. It was too long.) If they don’t figure it out there.. I just really am clueless, as it’s extremely unlikely to be from the Mono. Or so ‘they say’. But it is HIGHLY coincidental, if you ask me.

 

We were told to not tell the school about the Mono diagnosis. I remember a friend of mine had it in 10th grade but she surely was kissing, and she was out of school for a couple of months. I guess they since have found that practice to be unnecessary, or so I have been told.

 

I just am sitting by the phone praying not to get a call because before school Mikayla was ever so slightly itchy again on her upper inner thigh, but did want to go in. I don’t see where the itch is coming from without the ingestion of an allergic food??? Today we will find out. (I am assuming.)

 

The school day is nearly over and we haven’t gotten a call, so apparently she is doing alright. To think for one second that we could be fighting for her life right now instead of a rash, my God. The Lord is good. I never had such a fright since my son and that did not turn out with a happy ending. I’m so glad God gave me my miracle.

 

 

What I got out of this experience

A sad reality of life that is so not fair, but can be oh so real.

 

I always knew life could throw curve balls and could be cut short at any time. That has already hit home for me. What I have been thinking about the past day and 1/2 that the ‘C’ word has been ruled out for us is  how sorry I feel for the other parents whose child has these symptoms and is not as fortunate as we are to get a different, far less dire diagnosis.

 

What about the children and the parents who are forced to endure the fight against cancer? My heart bleeds for them more than ever before. I was always a compassionate person who regularly hands over my change to the Ronald McDonald House. And yes, I have been a save the children sponsor. But you never think about your children and the ‘C’ word. I never did at least. 

 

This could have played out very differently, and for others it does. And all I can say is my heart truly goes out to them, and my prayers do as well . The little warriors and the parents staying strong for the sake of their child. They are all heroes!

 

This has really made me feel blessed for the 4 healthy children that I do have, and I pray it always stays this way. It also makes me want to reach out and help others more. I always aspired to do that, but this was an eye opening experience. Maybe I could visit these children in the hospital and spread some cheer around. Maybe do something from home, even when time is hard to come by, to help lift their spirits. Get involved in the cause, some way, some how.

 

Life is precious Life is special. It should never be taken for granted. Not a second of it.

Where there is love…there is always hope. You should never give up on it.

Right now, I just couldn’t be more thankful!