When Time Stood Still (Pt. 3 of 5)

Where were we? Oh, yeah…Team Dracula just came in to take (more) blood after our son had been screaming his head off all night and hadn’t been able to sleep. I just want to take this moment to say I realize everyone has a job to do.  I do not fault them for doing their job. The flip side to this: our nurse, Stephanie, also had a job which she took very seriously.  Her job was to be our advocate of common sense. As Team Dracula was circling around, Stephanie barges in our room, saying, “No. No, no, no. That poor baby has been up all night and just went to sleep. You are not waking up that poor boy just so you can get some blood. Come back later.” In my book she will forever be referred to as Saint Stephanie–she bought us 1 1/2 hours. <Again, bless her>  It was just an hour and a half but it was just enough to allow us to recoup for the hardest two days of our stay.

In the early morning after blood was drawn and the doctors made their rounds, we were told as long as the blood results came back and looked okay, we would be allowed to go home around 1-2pm. Really?  Go Home?  Awesome!  Well, 1 o’clock passed. And so did 2 o’clock. We were then told the oncology team would come speak to us around 4 – 5 p.m. Hmm…that doesn’t bode well for us, does it? At 5 o’clock, oncology came and told us they suspected from preliminary testing results that Mac had a rare disorder called LCH (Langerhans Cell Histiocytosis). The oncologist and hematologists each explained why some think LCH is a cancer but why “purist” and hematologists think it is not. We were told to not get on the Internet because the information we would find would be very misleading.  True to human nature, we clickity-click-clicked our way through Google. Long story short, we would not be going home.

We were transferred to the oncology ward as we waited for final confirmation of diagnosis.  As suspected, results confirmed Mac had multi-system LCH. Our new room was very nice and unlike our other room it had an expansive window with a great view. Unlike our room, the words and experiences we would have here would be some of our worst during our stay.  Once we got settled, the oncology team came to talk to us again.

A Room with a View
1/May/2013

This is where we really start to spin. I feel like I keep saying that but truth be told, we lost concept of time, nutrition, and hygiene.  We were a motley crew, party of three (four if you count pups).  “Test results are LCH positive. Your son has LCH is his bones, skin, lymph nodes, soft tissue tumor…” This is when I felt I was not in my body…this was not happening. I was sitting there. Crying. Disbelieving. “Your son will need to go into surgery tomorrow for a bone marrow biopsy and to implant a Broviac Central Line.” More words. More humming in my ears. “He will be on chemotherapy for a minimum of a year.” Humming. “He cannot be in crowded public places. He cannot take a bath, go swimming…” More humming. “Please, stop talking,” I kept thinking.

After being hit with a ton of bricks I took a deep breath. “At least we have a diagnosis and we can move forward.” Well, not so fast. We can’t move forward until he has a blood transfusion. I claim I know what it feels like to have a broken heart – in this moment I realize that “no…now your heart is broken. This is what a broken heart truly feels like.” I  was being verbally suffocated while my heart turned into the ash of a million pieces.

The first attempt (that’s right, there was more than one) for the blood transfusion was through an IV in Mac’s arm. For one reason or another, it was not taking so it was decided to put a second IV in his leg. After blood started pouring all over my son and my husband it was decided that an IV would need to be put on his head. Yep…a blood transfusion straight to his melon. Everyone, their brother,  and their grandmother’s dog tried finding a vein in his pale, soft skin…Mac’s veins were just too tired to cooperate. Three botched attempts left a bruise so deep in our baby’s hand it bruised from his wrist to his fingertips for almost seven weeks. Again, we found ourselves constantly holding our baby wondering when (if) this would ever end. I cannot speak for my husband but I was at the end of my rope. How much more can he take?

Blood Transfusion
1/May/2013

We were told the transfusion should take about three hours, however, at the fourth hour, the transfusion was stopped as the blood was no longer good for use. The doctors assured us that even though he did not get all of the blood it would be enough to get his counts where they needed to be to start chemo on Thursday or Friday. The crazy thing–they left all three IV’s in him because they were unsure which would work best for his surgery and biopsy the next day.  Our poor little guy looked like the backside of an entertainment center:  cords and lines everywhere.

Trying to Find Humor…Trying

As the night moved on, we saw something wonderful. Our pale, fatigued boy had a new beat to his step and a pink glow to his skin that we hadn’t seen in days. He even got down to crawl around and to play the guitar (which, I know made his father very proud). Seeing him act like an eleven month old, despite all the cords, lines, and bandages, was such a breath of fresh air.  This would be the first, but not the last, time Mac would demonstrate a resilience and strength we never knew would be possible.  Yes, Mac’s a fighter.

Late Night Guitar Shenanigans

Beautifully Broken

It seems in the beginning of our journey we could not get a win under our belt for anything. Now as we are adjusting to our “new normal,” I find our hard days are still present but seemingly fewer and farther between. Though we have more positive days, I find that my hard days are extremely difficult and I’m unable to gain any traction. I keep telling myself to embrace what I cannot change but man, oh, man, that is much easier said than done.

I was just feeling, “bleh.” You know the feeling. The feeling you know it’s bad when even a pint of Ben & Jerry’s Chocoloate Fudge Brownie won’t alter your mood for the better. “I’m broken,” is the only phrase that kept crossing my mind. My prayers in these days, though more frequent in numbers were much less in substance. I would find myself just halting the route of my prayer and telling God, “I’m broken. Fix me. Fix my mind.” That is one of the worst parts for me, I suppose. The fact that I cannot seem to keep a lucid thought and I’m just stumbling along with my words  following suit. Nothing made me feel better much less made me feel normal. I just kept repeating my new mantra  “I’m broken.”

In moments (more like days) like these, it is very refreshing to know there is something bigger than me. Bigger than my son’s disease. And bigger than all things logical. I am fortunate enough in my life to have experienced moments when I know God has been gracious enough to let me know He is listening to me. While attending Vaughn Forest Church on June 2, God tapped me on my heart. The sermon was one part in a series titled, “Fix and Mend” (Mending Martha). One of the key points I took from this sermon was that we may be full of doubt and not know the outcome but we must follow in faith. I have to keep reminding myself that God is using this experience to redirect my life purpose. I must walk in faith and use this experience to grow.  I’m not broken.  I just need to be still and let God do his God thing

As if it wasn’t enough for me to feel the sermon was being preached directly to me, God decided to throw a little added assurance my way. I was listening to the radio when an artist (no clue as to a name) was talking about one of his favorite verses, Psalm 34:18: The Lord is close to the brokenhearted, and saves those who are crushed in spirit. I was stunned. This is a point-blank message to me. I AM brokenhearted. I DO have a crushed spirit.  “Okay, okay.  Got it, God.  You’re listening.”

Despite these two good / God things happening to me earlier in the day, God decided to throw in one more assurance as I was preparing for bed. During our hospital stay with Mac, the book Jesus Calling was given to me as part of a care package. Though I had this book for weeks at this point, I finally settled in bed and started reading. I began at May 1, the day Mac was officially diagnosed with MS-LCH. The first sentence in this devotion: You are on the path of My chosing. There is no randomness about your life. “Okay, God. I get it. You’re listening. You’ve now told me three times today.” The devotion of May 1 ends with, “…let My Spirit direct your steps, enabling you to walk along the path of peace.” Peace. Man, I could use a super-sized dose of peace. The devotion of May 2nd goes on to say times of adverisity are used to “amplify” the awareness of God. Well, if you are of faith or not, when your childs health is in jeopardy and you are hearing words like “chemo” and “permanent consequences” it puts a few things in perspective for you; God, just being one of them. As stated in Proverbs 29:25 I need to find strength in God when I am feeling tired.

So, despite feeling like a modern day Charlie Brown, I was able to get my emotions recharged and in check. Well, techicially it wasn’t me but you get the picture. I know there are probably scientist and nay-sayers who can shrug this all off as coincidence but I have never been humbled by a coincidence. I have, however, been humbled by God.

When Time Stood Still (Pt. 2 of 5)

Monday.  Lymph node biopsy day.  April, 29, 2013.  We were told on Sunday that Mac was the first patient of the day so to have him bathed no later than 5:30 a.m.  I remember thanking God for this early appointment because I did not know if I could handle the anxiety of having to wait.  Well, evidently God has more faith in me than I do.  Mac did not go into surgery until close to 10 a.m.  I was literally shaking with fury when our morning nurse came in.  I introduced myself and preemptively apologized for how I was going to come across:  rude, impatient, not understanding.  Maybe even a little coo-coo.  “Why have they not come to get him?  Why did we have to wake him up to give him a bath to sit in the prison of a room for four hours if they were not ready for him?” We all know hospitals have their own schedules but don’t they know they are dealing with our son?  I never knew the spot between the corner of my eye and the bridge of my nose had a pulse until that day–my body was physically responding to what I had been emotionally feeling for just a little over 24 hours.  “Mrs. Howard, transport is waiting outside to take Mac as soon as I take his vitals.”  Ashamed.  <Thank you, God, for an understanding nurse who probably deals with LifeTime actresses like me all day>

The walk from our prison, I mean, our room to the operating holding area seemed to be 10 miles long.  It was so quiet.  So vacant. So, so surreal.  This would be the first of many times we would have to hand over our son to a complete stranger and trust them with his life.  At this moment, Dr. Elizabeth Beierle came in, talked to us briefly and asked if she could carry Mac.  Somehow, this comforted me.  At least we had met her previously at our initial consult  and I did not feel like I was just handing Mac over to someone who only knew his name because of his chart.  Tears.  The big kind.  There he goes between the double doors.

…

I wonder if those doors realized how much weight they had on them.  Afterall, on the other side of those doors was our fate.

Mac’s lymph node biopsy went well. They removed 1 1/2 lymph nodes–they would do an initial screening, which would have results within 24 hours and then a more in-depth screening, which could take 3-5 days.   He looked so tiny and seemingly peaceful when they rolled him out to us on that huge gurney.  Poor kid.  We took him back to the room where he slept, slept, and slept.  We never let him out of our arms.  Various doctors from various teams were coming in and out.  I honestly cannot tell you who they were or what they said.  All I know is my physical shell was in that room, my mind was not.

Even Mac knows to stay cool in all situations
29/April/2013

In the early evening, Mac became very fussy.  His neck was swollen to the point that he no longer had any distinction between his neck and jaw line.  They would give him acetaminophen and Motrin for the pain but it did not seem to work.  I don’t know about you, but if someone sliced my neck open I would want something a little stronger than  Tylenol or Advil but hey, that’s just me.  UAB was remodeling Dearth Tower so we were only one in a hand full of patients on this floor.  We tried walking Mac in the wagon but the walks were short and not very inspiring to the mind or soul.  We asked our nurse if we could take him to the new portion of the hospital where there was more room to walk around.  We were permitted to do so but were instructed to check back in at the nursing station every 15 minutes.  The attempt for a long walk proved fruitless. Mac was so tired but every time we would have to get in the elevator the stopping of motion would cause him to wake.  It was a vicious cycle that kept him up all night and into the early hours of the morning.  Finally our baby boy fell asleep at 5:15 a.m. on Tuesday morning.  At 5:40 a.m., Team Dracula (phlebotomists) arrived to take more blood. “You have got to be freakin’ kidding me.”  At this point we had been up for 24hours.

How is it possible that this is our poor little guy? Post-Op. 2013/April/29

When Time Stood Still (Pt. 1 of 5)

Looking back from the time Mac received his oncology referral to the time of his LCH diagnosis, time seems to have passed so quickly.  However, in the heat of the moment as we were living those long days and endless nights, time ceased to exist.  The days and nights had no clear definition and they ran one into the other accompanied by a feeling of not being able to breathe.  “This isn’t real.  This isn’t happening.  I cannot hear any more.  Doctors, please stop talking.”  To get to this point in our journey, we must first look back:

Since Mac was two-months old, we knew “something” was different.  On April 22, 2013, we had our first consult with Dr. Whelan, Children’s UAB.  We had no idea that it was this appointment that would redirect the course of our personal and professional plans individually and as a family.  That Monday, Mac had to fast which undoubtedly made us very popular in the waiting room.  There were many tears (mine were internal) but other than that, the meeting went very smoothly.  The staff was exceptionally nice and we left convinced that our child did not have cancer or a cancer-like disease, that it was merely an infection of some sort.  Dr. Whelan scheduled Mac’s biopsy with Dr. Elizabeth Beierle for the following Monday, April, 29, 2013.  We took Dr. Beierle’s name as a “sign” of good things.  Our daughter’s middle name is Elisabeth and she pronounces her first name “By-Ler,” which sounds very similar.  Yep, we were looking for only the positive.  We were advised that if Mac had any change of behavior (refusal to eat, vomiting, fever, etc.) to contact the oncology nurse immediately.  “Okay,” we thought, “see ya on Monday.”

Momma, Mac, & Pups / Oncology Consult
2013/April/22

Little did we know we would find ourselves calling the oncology nurse first thing on Sunday morning due to Mac vomiting and she would instruct us to drive immediately up to UAB Children’s ER.  Even at this moment, we were still somewhat in our little cloud of denial.  The ER doctor ran a myriad of blood tests and told us he would return in an hour or so.  So, we pass the time.  How?  I do not know.  It is lost among the multitude of rooms we would be shuffled in and out of for the next 7 days.  The doctor returns to say Mac’s WBC (white blood count) is “indicative of leukemia of other cancers, but you’ve heard that already.”  Ricky and I look at each other.  Stunned.  Speechless (which those of you who know me best know the is not an easily obtainable feat).  “No, actually.  We have not heard “cancer.”  His blood counts have always been normal.”  Then…the back-peddaling began:  “It could be an infection.  Strep, Mono. Maybe even cat-scratch fever.”  We rolled our eyes thinking, “No. No. and no,” because these are all things we had been hearing for months and months.  The ER doctor knew he had misspoke and just sent our minds reeling to the infinity no parent wants to be in much less find themselves living. We were reaching the top of the roller-coaster…

We were admitted to the pediatric ward with Mac’s white blood counts being at 29,000 (normal counts for an infant range between 3-10,000.  Adults:  5-10,000).  Granted, when viewing cancers you will see numbers in the hundreds of thousands so even though Mac’s numbers were high, there were still somewhat low in comparison.  Yes, even at this point,  we are still in denial.  Are you seeing a pattern?

Initial ER visit at UAB Children’s – 2013/April/28

Once we get settled into our room, we are later introduced to Dr. Kevin Cassady, M.D. Infectious Disease.  He asked a lot of questions regarding where we moved from, where we had traveled, our household environment and so on.  We first thought his line of questioning was focused on my husband since he had been to Qatar, Spain, and other foreign countries within the last two years.  We are still clinging to the hope of an infection…afterall, why would the infectious disease guy be talking to us if it were cancer?!  We are hanging on by a nail.  Literally, still clinging and still denying.

LCH: It’s a Love / Hate Relationship

I am not sure if it is fair to say there are things I love / hate about LCH since I am not the individual going through it. However, I’m going to say them anyway.

The Hate

Things I hate about LCH and its subsequent chemotherapy?  Well, that’s easy. I hate dreading Tuesdays.  I hate the fact that I am literally walking through other days of the week dreading Tuesday.  When I catch myself in this vicious cycle of dread I try to remind myself, “…do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  Isn’t it biblical for me to laugh at the days to come?  I must have misplaced my “dignity and strength” with a dose of dread, salted with my tears.

I hate the two-hour drive to the clinic where I am hoping, praying, and crying internally that it will be a “quick” visit and nothing goes wrong.  I hate that my son’s 30-second chemo administration involves us having to be at the clinic anywhere between 3-5 hours on a good day.  I hate that the medication has stripped my child of a schedule / routine.  Naps? Those were so last month. Is the lack of sleep to blame for the moods or the meds?  Or both?  P.S., if you haven’t caught on, chemo meds and sleep deprivation are the ultimate super villan.   “Mac, meet Jackal and Hyde.  Wait…what the…you ARE Jackal and Hyde…”

The fun doesn’t stop in the day my friends.  This chemo rock star wants to party all night, too.  Eat, drink, and be merry.  For hours.  And hours.  AND HOURS.  “2 a.m.?  Nah, let’s rock on until about 5 a.m.  That will give you just enough hope that you will get some sleep before big sis decides to wake up.”

I hate that his sock drawer is no longer a sock drawer.  His socks now share the same drawer with his shirts and onesies while the old sock drawer is now occupied with syringes filled with heparin, saline, dressing kits, gloves, masks, sterile pads, tape, scissors…should I go on?  Oh, and that cabinet in the kitchen that was for plates and bowls…it now is the proud landlord of Fer-Iron drops, Polyethylene Glycol 3350NF, Hydrocodone, Prednisolone, Ranitidine, Sulfamethoxasole-TMP, and the like.  Need more?  Nah, I think you get the point.

Lastly, I hate that the life we imagined for our son will now be sprinkled with hospital visits, meetings with specialists, appointments, follow-ups, chemotherapy, medication, long-term health problems…for the rest of his life.  Not for the next year or the next five years:  THE REST OF HIS LIFE.  One of our initials meetings with the pediatrician at UAB stated “it’s the beginning of the mourning process.  Not because you have lost your child but because you have lost a “normal” life for your child.  I’m so sorry.”  I can honestly say I have never heard a doctor utter the words, “I’m sorry.”  It was gut-wrenching.

Alright…enough hating.  Afterall, I’m a strong believer that you should not hate something that cannot hate you back.

The Love

  I have told my husband, family, and friends, despite the unhappiness and pain of going through this, I am glad it is our family instead of someone else.  We have love for our God, love for each other, and the love / support of those around us.  We are surrounded by people who love us and aren’t afraid to show it.  It has truly been so overwhelming and beautifully humbling.  Other people in this world are not so lucky–so yes, we will use this experience, embrace it, and hopefully build a testimony because of it.

Mostly what I love, is seeing my son show physical improvement within the first week of treatment.  You take the bad with the good and let me tell you friends, the good is G-O-O-D.  Mac truly seems like a new soul.  He has lots of energy, lots of laughter, and can you believe it–this kid is funny despite all the mayhem going on around him.

I love seeing the kids at the clinic.  Though their bodies are tired, their mind and hearts have not yet received the message. Their bright eyes, smiles, and laughter remind you that life goes on.  Any child’s laughter is a sweet sound to the ears but the laughter of these brave children is extra sweet and extra touching.

We love our family and friends.  We knew this before, but holy cow…these guys really stepped up to the plate.  Loving us with food, playdates for our daughter, coffee, cards, books, letters…you name it, we have received it.  The most important gift(s) we have received are the prayers and positive thoughts.  We feel them.  We welcome them.  We need them.  Trust me when I say there are several times throughout the day which have a darkness that I do not welcome, however, they are accompanied by feelings of sheer peace and comfort.

Hindsight is 20/20

Ever since Mac was two-months old, we had a sense that something “wasn’t right.”  For example, it seems that from the very beginning, he was not much of an eater.  This kid honestly showed no active interest in being fed–he could take it or leave it and he would usually leave it.  The second thing we noticed were the enlarged lymph nodes on his neck.  At his three-month well-check, we were advised this was normal and it was very common in children to have enlarged lymph nodes when the body was trying to fight infection.  “What infection?” we would ask.  “Something viral,” we were often told. Take note, we listened to the doctor and even after researching on-line, everything we found seemed to support this idea.  Then, we noticed a rash on Mac’s groin.  We thought it was diaper rash–though, it really didn’t look like diaper rash.  Then we thought, “well, both our kids have eczema, it must be that…”  The rash never went away.  In fact, the rash never changed–it never got worse but then again, it never got better.  Then, there was the cough.  “Seasonal allergies?” (again, listening to the doctor) but the cough, unlike the seasons, never changed.  And…let’s not forget the night sweats.  Mac seemed to always have cold hands and feet but without fail, he would be sweating as we would put him down for the night or during our middle-of-the-night milk party.   Then there was the constipation.  That’s always fun.  Constipation so horrible it often led to midnight baths and more use of vaseline that I care to admit.  Undoubtedly, the most horrifying and puzzling thing were the tremors.  I wouldn’t describe them as seizures, they were more like the trembling you experience when having a fever but you are unable to get warm.  An episode of these tremors were accompanied by his lips turning blue one late afternoon.  Needless to say, my husband drove him to the hospital. It is this ER visit that is the catalyst for finally getting us on the road to a diagnosis.  After the ER visit, it is mandatory to follow-up with the pediatrician on base.  Luckily, Dr. I Don’t Know (sorry, but this is how we refer to him) was out of the office.  All I can say is, “thank God.”  This was late Friday afternoon and we were at Children’s UAB first thing Monday morning for an oncology consult.

Only now that we have a diagnosis does it seem so simple.  Sadly, these were the things we could see / hear.  We were not even thinking about what we could not see (i.e. soft tissue tumor on his temporal lobe).

According to Boston Children’s Hospital, common symptoms of LCH in children include  the following:

• Skin rashes (Mac = Check)
• weakness and Failure to Gain Weight (Mac = Check)
• Fever / Night Sweats (Mac = Check)
• Tenderness in bone area (Mac = Check–in hindsight, of course.  Something was growing in his skull!)

Other symptoms include, loose or lost teeth, swollen gums, multiple ear infections, eyelids swelling and other vision problems, excessive thirst and urination (http://www.childrenshospital.org/az/Site1101/mainpageS1101P1.html).

In hindsight, I (I cannot speak for my husband) feel bad for making comments like, “Mac is really enjoying being a baby.”  I made this and other similar comments in reference to him not sleeping through the night, being a picky eater, or even when he would be content until the moment he saw me, only to cry.   I know, I know, “don’t blame yourself.”  But I do.  I KNEW something was askew. Not only did my gut tell me something was not right but my son was telling me the same.  Lesson to be learned:  if you have a gut instinct, act on it.  Get a second opinion.  Or a third.  Or a fourth.  As parents of young children, we are their ONLY advocate.

Diagnosis: Multisystem LCH

On May 1, 2013, our son Mac was officially diagnosed with multisystem Langerhans cell histiocytosis (LCH).  At the time of diagnosis, Mac had rashes on his skin, enlarged lymph nodes in his neck, chest, and groin.  He also had a skull lesion on his temporal lobe which would later be determined as a soft-tissue tumor.  He would be turning one in just nine days.  LCH occurs in any age group but most commonly appears in children.  Occurence of LCH in newborns and infants under one year are said to be one in 1-2 million.  At first we were relieved with this diagnosis but it only took a matter of hours before we realized how naive we were being.  All this time, we had been praying that whatever was wreaking havoc on Mac’s body to not be cancer.  Well, it’s not  (technically). We were told “purist” don’t classify LCH as cancer, however, the medical community still remains somewhat divided on the issue.  It is a disease that was thought to be cancer for many, many years.  It acts like cancer–instead of one cell going rogue, it is several cells going rogue and attacks various body systems.  And…it’s treated like cancer.  Bottom line, our 11-month old son would be undergoing chemotherapy in a matter of hours.  And here is where our roller coaster ride begins.