One Year Clear

It is amazing how time can travel.  One moment, you are in the darkest, deepest trenches and you are grasping for anyone or anything to help pull you out. The next moment, you turn around and you cannot even grab the = of the moment just passed.  So, that is where we find ourselves:  One year clear.  Let me say it again (just because it sounds so good and reads so well):  One year clear.  Go ahead, Team Mac. Give yourself a pat on the back, a high-five to your fellow teammate, and a “thank God” exhale.  Honestly, there were moments we thought we would never see this day.  There were moments (or days) spent in the hospital and doctors offices that appeared to have no end in sight.  The sleepless nights, the endless tears, and the slow emptying of our entire emotional and physical structure steeped slowly, becoming an unwelcome house guest.

We can remember the exact moment when we were told Mac would be receiving chemotherapy for the minimum of twelves months.  Minimum. Twelve months.  One year.  365 days of “is this really our life?  Is this our normal? How do people make it out to the other side??” Only now that we have survived the troubled waters do we realize we are the fortunate ones.  Mac’s treatment was changed while on maintenance chemotherapy due to new LCH involvement but somehow we still finished within the year.  Other families were (are) not so lucky.  They find themselves being on treatment for years or worse, losing their team captain.  We never questioned “why us” or “this isn’t fair” during the moment, but now I do (I cannot speak for my husband).  As I look at my (mostly) healthy rambunctious two-year-old-soon-to-be-three-year-old, I question, “why were we chosen to be the fortunate ones?”  Who am I kidding?  We were not chosen; we are lucky.  We are lucky to have a God so loving and powerful to take care of our son. While our government speaks of our children being a priority, their action…wait.  Let me reword this:  Their inaction, proves differently.  Only 4% of NCI funding goes to pediatric cancer research.  Is the number one killer of our children only worth 4%?!!  Orphan diseases receive even less funding.  It’s one thing to be a statistic.  It’s a completely different animal to be a statistic without funding or support.  Mac and his fellow warriors rely heavily on fundraising and private donations, most of which is raised through the Histiocytosis Association of America.  Even a year after treatment, we will still randomly receive a card from The Histiocytosis Association letting us know that a donation was made in Mac’s honor.  How humbling it is to know that someone out there loves our family enough not just to think of Mac but to support him where the government does not.  Don’t worry.  This will not be a government-bashing post.  I will save that for another time (kidding—maybe).

IMG_0377

What this will be is a post about our tough-tike who is so, so incredibly awesome. Yes, we may be biased but we are pretty sure we have a few supporters who may confirm our thoughts.   I was just saying the other day that Mac is so awesome and he doesn’t even have a clue as to how amazing he has proven to be in his three short years.  He has no idea how many people have prayed for him and cried over him.  He will only hear but never truly understand the feeling that  his father and I had when we had to contemplate canceling his 1st birthday cake because we didn’t know when / if he would be out of the hospital.  He won’t know how our minds were sent reeling to thoughts such as “will we be buying a casket for his first birthday?”  This is startling to me still—my heart literally skips a beat with the terror  This is the harsh reality we were faced with just days before Mac’s first birthday.  Consequently, every annual MRI (Mac currently has an MRI every 6 months) will be accompanied by these thoughts and these memories.  Though it is extremely difficult, we will acknowledge these morbid, life-changing memories and train our minds and hearts to declare them simply as a hurdle that our “mighty warrior” defeated.

The main purpose of this post is to give hope to all the families who are finding themselves scouring the Internet for any and all information they can get regarding LCH (Langerhans Cell Histiocytosis) and other histio-related diseases.  We want to let you know that it WILL end.  What will not end is the loss of young lives until more effective treatments are implemented and a cure is found.  What will continue is the fact families will struggle with the cost of treatment. What will prevail is that the histio community will pull together and show you support that transcends the financial burden LCH has laid upon you.

Know that you WILL come out the other side stronger and wiser than you could ever hope.  The side you come out of may not be the side you want but know there is a God that has bigger plans for you than could not even begin to imagine.  We truly believe that not one soul is lost in vain to this horrible, yet little-known disease.  We believe we have experienced this trial for a greater purpose. We have resigned ourselves to the thought that we may never know the “why” of it all during our short time on this earth.  We can only hope that Mac will witness the “why” in his lifetime but even this is not a guarantee.  For now, may the purpose be through the lives we live and through the people we touch with our hands and words.

Your child’s strength will be the strength that you acknowledge but always know YOU are also a definition of strength.  You will fight for them and every breath you take is for their well-being.  There were times (and times still) where I feel like I am going mad / crazy.  This is a traumatic life experience and its wake  may not be felt until long after the treatments have ended. Never be ashamed of crying, screaming, being hopeless, being angry, confused, and seemingly living a life that is not yours.  Always know that there are people who have walked in your footsteps and they are wanting to hold your hand and walk with you down this path, regardless of how scary and isolating it may seem. Know you are in the company of many great parents, grandparents, and other family members / caregivers who suffer from depression and PTSD (post-traumatic stress disorder).  Don’t ever think, “that will never happen to me,” because I’m pretty sure, you never thought your kid would be diagnosed with LCH either.  This is a post to let you know you need to equip yourself with knowledge and a side-order of stubbornness.  When you get a “gut” feeling, PUSH and push hard.  When you force a doctor for further explanation, examination, and testing, the best case scenario is you are wrong.

Keep HOPE in the front pocket of your heart.  The hope that the days will get easier, the hope you and your child will get stronger, and never lose the hope that this disease will see its end and its day of having a cure has finally arrived. Always, always have hope.

As always, thanks for all the love Team Mac.

For more support for families who have or have had a family member suffer from a histio related disease, please go to https://www.facebook.com/groups/OurHistioFamily/

For all other things histio-related, please go to http://www.histio.org

Team and Family

We are Team…

We are Team Mac Howard. We are Team Colin. We are Team Super Jake and Team Parker.  We are also, Team Angela.  More important than team, we are family.  We are the Histio Family.  We are all united by a blue ribbon, which we wear on our sleeves and in our hearts.  We know what it’s like to have sleepless nights and restless days worrying not only for our own child but for the child of our histio family.  We fight, pray, and cry for ALL of our histio kids.  We mark our calendars with not just our own kids’ chemotherapy schedule, scan dates, and procedures, but for those of the other histio kids—because they are ours, too.  Physical distance my separate us but we are on one another’s hearts and few know us so closely and so intimately.  I’m not exactly sure why certain families connect so strongly but we do and for that, I am thankful.  Sometimes, I will be trapped in a thought and someone will text me, call, me, email me—they will snap me out a darkness that I have no business being in and I love them for that reason alone.

Team Mac Howard is only ten months into our histio journey (though at times, it seems so much longer).  We have had the pleasure of befriending Team Colin.  Team Colin rocked our world.  I think it is fair to say Colin grabbed my attention because he was receiving treatment at Children’s of Alabama, Birmingham, where Mac was diagnosed and received his first twelve weeks of chemotherapy.  When I think of Colin, I think of his smile.  I can see the hallways in which his family walked for my family has walked them, too.  I wonder if they sat in the same “holding area” before sending Colin into surgery as we sat while not wanting to let Mac out of our sight but reluctantly doing so.  I often wonder if they had the same nurses, the same doctors, and the same Family Resource personnel   like Michael* who would come in and play the drums.  Though Colin will forever be a part of our histio family, he was fighting a much tougher battle than Mac.  Colin was diagnosed with HLH (Hemophagocytic Lymphohistiocytosis, which yields a mind-blowing 50% mortality rate.  Colin refused to give this disease any recognition of power, insisting it being  referred to as “hlh,” (all lower-case), when referring to this horrific disease.  How can you not like a kid with that attitude?!  He had an attitude worth having.  Did I mention he was six?  Though we were only able to correspond with Colin via mail, we were blessed enough to be sent his picture with the “HERO” card we sent him.  “HERO” is a title worth capitalizing.  As of January 9, Colin also has the title of “ANGEL.”  I think it is fair to say the Histio-Family was absolutely shattered by Colin’s passing.  Colin and his family remain so heavy on so many hearts.  His family has vowed to keep the fight of awareness going and to find a cure.  I can assure you his death will not be in vain and his Histio-Family  will carry on for him.  (To learn more about Colin and his family’s commitment to spreading awareness, please visit Team Colin)

We love you, Colin.  Hope. Lives. Here.

Team Colin - Gone Too Soon <3

Team Colin – Gone Too Soon ❤

Team Super Jake also holds a soft-spot in my heart.  How can I not feel a connection to a family who gets to experience the beautiful-ness that is East Tennessee?!!  The Air Force may take us many places but Tennessee will always be home. While staying with my parents (we were in-transit to Boston), we got to meet Team Super Jake as he was receiving treatment at East Tennessee Children’s Hospital.  First impressions are lasting friends, and let me tell ya, Jacob is a first impression worth having.  This young man is so sweet, so well-spoken, so brave, and…he has the face of an angel.  Jacob was so willing to verbalize what he was experiencing, how the treatments made him feel, etc., which was (and still is) important to me since Mac cannot tell me.  Jacob has a sweetness that you see instantly on his face.  And his momma…let me just say…I love her.  She is a constant source of love and support and if I could have her closer, I would stick her in my pocket in a heartbeat.  (to learn more about Jacob, please visit Jacob’s Journey).

Team Super Jake and Team Mac meet for the first (but not last) time.  #twotoughcookies

Team Super Jake and Team Mac meet for the first (but not last) time. #twotoughcookies

Team Parker is also receiving treatment in Birmingham at Children’s of Alabama.  Parker is nothing short of a superhero and he has the wardrobe to prove it.  Similar to age as Mac, he also has an older (and undoubtedly wiser) threenager as a sister.  It is so obvious to state my connection to this family—even if you were to take away the histiocytosis disease (which God knows I would love to), this house undoubtedly experiences the day-to-day crazy we experience at the Howard House!!  Parker, like many kids I have come to know, chose life.  He choses to smile.  He sees his obstacles and he climbs over them…smiling.  He’s been on the toughest of roads and still has a tough road ahead of him but he and his family embrace it with love, determination, hope, and faith.  Team Parker, if I could hug your face at this moment, please know I would.  I love you through the miles and cannot wait to see you on the other side.

Team Angela.  I pray for you every day, baby girl (as I do your mom, dad, and family / friends).  Your parents love you so much.   Your parents love you so much they are on a mission of hope to spread awareness of your (our) “rare” disease…I have no doubt they are ready to move you across the country to bring you to the best doctors…if it were only that easy.  As a parent of a child with a “rare” disease, I’ve come to realize that there is nothing rare about histiocytosis.  It consumes every free thought, hope, and desire that ravages your heart and mind.  An “orphan disease.”  Orphan…that’s what they call your disease.  This is what happens when numbers take the place of human lives. Government funding need not apply if the numbers don’t meet the quota. It loses all meaning.  Percentages and statistics preside over your child’s name: Mac, Colin, Jacob, Parker, Angela, and the rest of my family…You are only 1 in 200,000 Americans so we can’t help you.  I’m a disgusted parent.  A disgusted American.  “Happy” Rare Disease Day.

Team Angela - Australia

Team Angela – Australia

Rare Disease Day is today (February 28). What are you doing to aid in awareness?  Odds are, you’re not doing enough.  Neither am I.  And that is NOT okay.  Do more than buy a shirt.  Do more than pray.  In fact, go ahead and send a letter to your representative, as well, and let them know that EVERY child matters and that “orphan” does not belong in the title of children with a rare disease. Mac, Colin, Jacob, Parker, Angela, Rio, on and on it can go.  These are not numbers, they are our Team and our Family.

Maya

Our first meeting with a histio family <3

Our first meeting with a histio family ❤

Fight like a Kid

Fight like a Kid

If he / she has a name, is he / she rare?

If he / she has a name, is he / she rare?

It’s All True

This may come as a surprise to most of you (especially my husband):  I am not perfect. Compose yourself people, we have a blog to read here.  Come to think of it, and to reiterate what has been stated in previous posts,  I am not even strong.  I cringe whenever someone tries to tell me otherwise.  Strong?  Hmph.  Well, I guess by “strong” we are not talking in terms of Schwarzenegger or Tungsten (go ahead, “Google” it; I had to). Plainly put, I am a scattered-covered-smothered mess.  These are the thoughts that run through my mind daily and were the yellow-brick road leading to my therapist’s office.  Yep.  Therapy (gulp).  So, there you have it–I’ve invited one of my skeletons in my closet to come out for a dance. I hope you enjoy the show.  From the beginning,  I promised to be real no matter how unflattering things came to be.  Well, folks.  Things just got real.

I have good days.  Bad days.  And ugly ones, too.  Most are ugly.  I wish I could lie but what’s the point?  My days are filled with aggravation, impatience, rudeness to my spouse and children, and an over-whelming sense of inadequacy as a Christian, a wife, and a mother.  As my therapist would say, “tell me more about these feelings of inadequacy…”

Get ready to dance skeleton(s).

*AGGRAVATION:  The simplest things rake my nerves.  Making a meal-plan for the week – aggravated. The guy honking his car horn when he is three cars behind at a stop sign – aggravated.   A dog who doesn’t want to go outside because there is snow on the ground but thinks it’s completely acceptable to take a poop in the living room in the five minutes I am upstairs brushing my teeth – extremely aggravated (breath, Amanda).  Egh, I can’t even breath right because of this winter air – aggravated.

Lou giving Mac some love.  Photo Courtesy of Jane Brown Photography

Lou (the carpet-pooper) giving Mac some love. Photo Courtesy of Jane Brown Photography

*IMPATIENCE: Patience is a virtue.  A virtue which is completely devoid in my life these days.  When I want things done, I want them done immediately, or better yet, before I have to ask (sorry, honey).  I don’t care if you have worked hard all day, if you are only three years old, or whatever lingering excuse there may be.  Patience, Amanda.  Patience.  You are to be humble, gentle, patient, and to do all things in love.  All things.  Not some.  ALL.

*RUDENESS TO MY SPOUSE:  Listen, like many of you, I am sure you think your partner hung the moon.  Maybe they did.  My partner, well, I would first question his said ability to hang the moon, refuse doing it myself, and then criticize him for doing it his own way.  Yep…I’ve turned into “that wife.”  You know, the one that complains…about everything.  I don’t even like myself.  I am so critical of this “new me.”  I’ve openly discussed my awareness of this monster with my husband.  I try to be nice.  I pray about being nice constantly.  “Today is going to be different,” I tell myself and it usually is, until my husband gets home.  Why do I do this?  Well, despite the earnestness of my plea to God to help me in this dilemma, do you know how He answered me?  Well, He planted a group of women in my life who decided to read a book that I have been wanting to read, “The Power of a Praying Wife.”  Stick with me here, I don’t want to scare you away with my “Jesus-Freak.” This isn’t a book on how prayer can change your life into it being what you want it to be.  It is a book about changing your perception (which, honestly, I think many people could benefit from a small dose of “it ain’t about you, sweetheart”).  Three words for everyone…male, female, Christian, atheist, Yankees fan, Red Sox fan:   “Change me, Lord.”  That’s right.  Change “me.”  Not “change my husband,”…CHANGE ME. This one hurt.  It still does.  I mean, let’s be honest, it is much easier to complain about the day-to-day when I can blame someone else for everything that is going on.  As if this little but powerful phrase was not enough, the book also led me to Proverbs 21:19.  As I looked it up in my bible, I had already highlighted this verse with the word “OUCH” written in all-caps in the margin.  The verse reads, “It is better to live in a desert land than with a quarrelsome and nagging woman.”

*RUDENESS TO MY CHILDREN:  Oh, how I am embarrassed even to write anything in this section without fear that I will be reported and monitored by DCS.  Simply put, parenthood (especially stay-at-home parenthood) can be the most-trying, brain-numbing, thankless job.   Ironically, it’s filled with an abundance of love, complete fulfillment, and awe of #ourlittlehowards.  I know it’s cliché but I am on this earth for the sole purpose of being Bleiler and Mac’s mother,  leaving a legacy of Christian-children.  They can be lawyers, doctors, garbage collectors, or janitors, it does not matter.  What DOES matter is living a life that exceeds the expectations and explanations of this earthly prescence.

For those of you who know me, I have never struggled with feelings of inadequacy.  I’ve been confident, willful, and determined for what seems to be my entire life.  Well, that is until I hit my “I’m-an-educated-established-woman-in-my-30’s-but-people-only-see-me-as-a-SAHM” phase of life.  The decision for me to stay at home came about after my husband deployed three weeks after our daughter was born.  He returned home only to be gone before we woke up and returning home after we had already gone to bed.  We are fortunate in that we could make this a “choice” as many families are not provided this opportunity.  But it is with this “opportunity” that feelings of inadequateness settled in.  Was society telling me this?  Was I telling myself this?  Thank God for Ricky recognizing these lies early and sharing with me a writing from Pope John Paul II:

It is a disservice not only to children but also to women and society itself when a woman is made to feel guilty for wanting to remain in the home and nurture and care for her children.  It is also necessary to counter the misconception that the role of motherhood is oppressive to women and that a commitment to her family, particularly to her children, prevents a woman from reaching personal fulfillment and from having an influence in society.  No response to women’s issues can ignore a woman’s role in the family or take lightly the fact that every new life is entrusted to the protection and care of the woman carrying it in her womb.

“Am I Christian Enough?”  No.  I will not claim to be well-versed in other religions but I am so grateful to have grace on my side.  Nothing I can wrap my brain around is enough.  Only by grace am I set free.  Someone loves me unconditionally—despite my side of (hopefully, temporary) crazy.

“Am I a ‘good enough’ wife?”  No.  In ANY relationship that is important, we should not strive to be “good enough.”  We should strive to be exempleraly.  And in regards to “relationships that matter,” I am referring to EVERY SINGLE PERSON YOU COME INTO CONTACT WITH.  Whether it be personally, on the phone, over email, passing in the street, whatever…when did it become acceptable to be curt? Uncaring?  Uninvolved?  I’ve said it before and I’ll say it again, this whole mantra of “I’m not mean, I just tell things how they are,” has gone too far.  A kind word, a smile, a helping hand, and  love are all free.  FREE.  And in a world so accepting of handouts, why don’t we put some of these out in circulation?

Imperfect by birth, perfected through grace

Imperfect by birth, perfected through grace

“Am I a good enough mother?”  Yes.  As long as I let my children watch television non-stop.  Let them eat candy for breakfast, drink juice all day, and never nap.  Come on…kids are worse than stockholders in regards to getting what they want when they want it.  I pray for my children daily.  Not only for them to live healthy, happy, faith-filled lives, but for them to know how much I love  them.  For them to know I would step in front of a train for them.  I would take their life-threatening disease from them.  I would even eat their broccoli for them.  Why?  Because I’m their momma.  And if I can do anything in their life to make it better or more enjoyable, I would (within reason).

The problem with “good enough” is this should never be the goal.  If I were to be buried (which, I don’t want to be), my epitaph would read:  “Forgiven Sinner.  Rockin’ Wife.  Wicked-Awesome Momma.”

Last week I was jolted by the phrase “there is purpose in the pain” not to be outone by today’s  (not-so-gentle) reminder that there is joy in the journey.  Noted.  So…with that, I will resolve my aggravation, impatience, rudeness, and over-whelming sense of inadequacies.  As my therapist gently reminds me, “it’s all true.”  There is some truth to all these conflicting thoughts in my head and struggles within my heart…everything and everyone has its purpose.

Guys, I love you. I can assure you that I am not trying to gain any pity points here.  Just trying to put pen to paper in regards to this cornucopia of emotional madness which is the battle of my head and heart.  I’m not the only one in the trenches here.  Beyond my family, there are many other families with many sick kiddos.  I often wonder if there is enough prayer and love in this world.  Luckily, I am reminded:  Faith, hope, and love remain.  The greatest, being love.  I have faith things will get better; I just have to remind myself when doctors don’t have an answer much less a cure, God does.  He knows and He heals (that’s why He is God).   I have hope my son will be healed and look forward to his pre-destined life planned by God.  And Love…love keeps me going.  It keeps us all going.  As a friend once told me, we don’t do it because it’s easy, we do it because of love.

Give Thanks in ALL Circumstances

Give thanks in all circumstances…”  Sounds easy, right?  Nope.  That doesn’t sound easy at all.  I don’t care who you are.  Even if you are a lucky soul who is mindful of their thankfulness every day.  I think it would be fair to say that very few of us are truly thankful in all circumstances.  ALL is a pretty big word when you get down to brass tacks.  Yes, indeed—three letters that carry a powerful punch.    Here…let me throw some examples your way just to get the ball rolling.  I love my kids but I am far from thankful for them when they are tugging at my sweater, screaming in my ear, taking toys away from one another just to make the other cry, and letting the dog lick their hands while I’m trying to cook dinner.  I love my husband but I am not thankful when he comes home late from work (mind you, it is my husband’s job that allows me to stay home and care for our children.  It is my husband’s job that gives us great insurance.  It is my husband’s job that relocated us to Boston so Mac could be treated at one of the best hospitals  in the nation. It provides a roof over our head, food on our plate, and money in the bank account but all that seems to go out the window of thankfulness when coming home 15 minutes later than he said he would.).  I’m thankful for the roof over our heads (funded by tax dollars, no less) but I tend to be ungrateful when downstairs in 65’ and upstairs in 89’ (I wish I was exaggerating), the lights turn on / off for no apparent reason, and the playing of TAPS every night at 9pm makes me do a momma-pucker and pray that it doesn’t wake one, if not both, of my children.  I could go on all day but I’m sure there is an article (or a thousand articles) that restricts the length of an effective blog.

I’m not going to lie.  I had every intention of publishing a different blog last Saturday.  One that was upbeat.  Positive.  A real “go get-em’” attitude piece.  But then, a droopy eye decided to invade my cherub of a son and give him the appearance of Quasimodo’s first cousin on Thursday.  A “let’s wait and see” mode of attack ensued only to be followed by a Friday of a working husband and a sleep-deprived, I-think-it’s-a-good-idea-to-do-a-cleanse-before-Thanksgiving-momma lugging two toddlers to a pediatrician visit, which ultimately led to a fun-filled afternoon at the packed ophthalmologist office into the wee-hours of early evening.  Breath.  It’s just a day.  A day in the life.  Your life, Amanda.  The chaos.  The chaos which is the normalcy of your “new” life.  So…at 559pm, I finally loaded by two, no-napping toddlers into the car (one which had been up since 4am—cue the violins).  So what do the little Howards start doing.  They started singing, of course.  And laughing.  Bless their little Howard hearts.  They bend me until I want to break and then they love me like no other.  This is the motherhood you hear about and don’t understand until you are a parent.  In this, I give thanks.

Sadly, our chaotic Friday only led to a chaotic Saturday ER visit to Boston Children’s first thing in the morning.  They recognize you.  They see the bright orange tag.  You’ve been flagged:  Oncology patient.  You settle into the cramped room knowing there will be hours of waiting.  Hours of doctors telling you they think it is just an “infection.” I love our doctors.  I love Boston Children’s (truly, I do).  But you reach a certain point as a parent of a chronically-ill child that you just know.  You just know it’s not an “infection.”  You know that something is “just not right.”  You can’t put your finger on it.  You don’t have a doctoral degree and you don’t know the medical term, but you know the child you are holding in your arms is NOT your child.

Then the order for the MRI with contrast comes.  For any of those of you who may not have much experience with testing, MRI’s are usually not a source of relief; they are merely a confirmation of things that are suspected to be.  Mac has had numerous scans but this is the first where he has been on the table and cried out, “MOMMA!!! MOM—MA!!!”  BREAK MY HEART.  Why can’t they learn to say “daddy” first?!!  I mean, really.     It has been hard enough in the past when Mac has fought sedation but the fact he is being restrained (by people who truly want to help him) and he still cries out for “momma,” is a feeling of hurt I never knew existed.  How do you explain to a baby that the pain you are putting him through is in effort—not in vain—to make his life better?!  Salt in the wound, my friends.  Salt in the wound.

So we go back to our home away from home.  The ER doctor comes to say he will be back momentarily to discuss the results.  He keeps his promise but this time, he brings a friend (again, never a good sign).  Dr. Andrews* comes in from the oncology team.  A seemingly familiar buzzing sound comes into play…”soft-tissue mass and lesion on his orbital bone (more buzzing) in addition to more lesion(s) on the back of his skull…(buzz…buzz…tears…buzz).  We have to seek a more aggressive chemotherapy regiment.”  SILENCE.  I want to leave.  I want to leave this room.  Leave this hospital.  The state.  The country.  This life.  We (#teammachoward) have officially been punched in the gut.  We are no longer half way through Mac’s chemotherapy protocol.  We are starting at ground-zero.  So…how am I suppose to give thanks in this moment?  Am I thankful for our nine-hour ER visit?  Am I thankful for new lesions?  Am I thankful that my 18-month old son has to pursue a chemotherapy regiment that has a “minimal” side-effect of secondary-leukemia?  Where is the “thanks” in all of this darkness?  I will tell you:  We will give thanks in this moment because there was such a TREMENDOUS outpouring of love and support for our family (from Christians, Atheists, Jews, friends, strangers, cancer-survivors, etc.).  Our inbox at one point reached 700+ emails of people reaching out to us from around the world letting us know they were praying for us, sending us love, and wanted to know what they could do to help us.  Histio is ugly.  Histio does not play fair.  But what I can say about histio is it has brought new people into our lives.  Histio has reconnected us with people we have lost contact with over the years.  Histio has cemented our existing relationships with a strength that is impenetrable.  There is beauty to be found among all this ugliness that has completely altered our lives and for that, I will give thanks.  Histio has challenged the faith of the faithful and challenged the faith of the unbelieving…For this, I will give thanks.  I can’t believe these words are coming out of my mind onto paper but “thank you histio.”  You are a rotten, evil, no-cure-in-sight disease but you breed hope, love, and faith and for that, I will give thanks.

I give thanks because #macsafighter

I give thanks because #macsafighter

If No One Wins the “What If” Game, Why Do I Insist on Being the Team Captain?

How great it would be if I could say things that wouldn’t hurt?  It would be even better if I could say things that wouldn’t offend.  Things would be better yet if I could speak and write without being misunderstood.  Imagine if people could truly know how much I love them–need them–depend on them.  What if my heart never had to bleed, never had to hurt, and it would never be misunderstood?

As a parent, we make the best decisions we can for our children.  As a parent of a child going through chemotherapy—this is never enough.  How I would have loved to have had treatment plans that included numerous options and not equally unappealing choices of a) no treatment, which would ultimately lead to death or b) toxic treatment which may prolong life but may also cause death.  What if the phrase “if the cancer does not kill you the chemo will?” never existed?  What if parenting meant never having to feel that you are never doing enough to help cure your child?  What if treatment options all had a silver-lining (rainbows and unicorns) and were devoid of the “risk of death”?  Is it feasible to hope that all treatment options could be covered by insurance?  Imagine protocol options that are not 30+ years old.  What if you never had to ponder if “money” is a dark-lurking shadow which makes you question the government and big pharma’s involvement in finding a cure? What  if research was never restricted to an ailment because it was considered “rare” and did not effect enough people?  What if the media (all media) was actually sensitive to how their marketing would be perceived by families fighting the hardest of battles?  Imagine if you never had to read a medical journal  which states the choice of treatment you have chosen for your child is comparative to “swatting a fruit fly with a baseball bat.”  It would be great if parents never had to hear, “we need to act immediately.  This is life-altering for your son.”

When is society going to learn that though we all may have opinions, it’s not always necessary to express them?   When did it become okay to judge one another (whether it be directly or passive-aggressively) when we are acting upon the best interest of our children?  Are we suppose to cast the first stone?  Or are we suppose to walk a mile in one’s shoes?  Trust me…you can have my shoes.  You can have my closet for that matter.

I try to remain neutral.  Is this because I have no spine?  Is it because I have no conviction of belief?  No…it’s because I’m a firm believer in that it hurts no ones  feelings by holding your tongue (FYI, I’m preaching to myself, here).  This culture of “I’m not a b!tch, I just say how things are…” has gone completely too far.  Am I being a sensitive mom with a chip on my shoulder?  Hell, yeah, I am.  My kid is going through chemo.  Is that a good excuse?  Absolutely not.  Am I embarrassed that my mind and heart are in constant battle of how I think and process things?  Absolutely.  Should I crawl under a rock when I hurt those around me who love the most?  Yes, but I haven’t found a big enough rock.  Where did happy, funny, easy-going Amanda go?  She got misplaced somewhere between Birmingham and Boston so if you see her, please tell her she is missed and there are some people in New England that would love to meet her.

What if my son needed only bandaids instead of surgery and scans?  My son has scars from his neck being sliced open.  Scars from his bone marrow biopsy.  More scars from his skin biopsy.  Oh, then there are the scars from his broviac-central line implantation AND removal, yeah, he has scars from those, too.  Not to mention the newest scars from the implantation of his portacath.  And then I wrestle with thoughts of, “but Mac still doesn’t have it as bad as so and so …”  Have you ever heard your doctor say, “brain tumor” regarding your child?  No?  Then you don’t have a dog in this fight.  Well, you do, actually.  Because like me, you probably have a child.  Or know someone who has a child.  You may even believe that children are our future–everyone’s future.  If you have any heart, you want the best treatment options to be available to everyone.  Everyone with no restrictions.  No restrictions of insurance coverage.  No restrictions of FDA approvals.  No restrictions of having a “cure,” no matter how many people are diagnosed.

Imagine if at night, when you have “alone” time, you actually got to do something you enjoyed.  Trust me, I love to read but somehow my recreational reading has bred a three-ring binder for treatment options, another binder for cancer and cancer-like diseases, another for medications, and yet another binder for medical journals and case studies.   A cure is not something I can buy much less get my hands on, whether it be legal or otherwise; so yes, for the first time in six months, I may actually be ballsy enough to ask, “why?  Why is there no cure?  Why, for the love of God can I not just shut my mind off and enjoy what little time I have with my husband?”  I am saying as a parent struggling for each breath of every day not only for myself but for that of my child, I detest the flippantness that goes in regards to the “C” word and it’s cure (or lack thereof).  I H-A-T-E the lack of funding or misappropriated use of funding.  And friends, for the record:  I despite the word “hate.”  Hate is a very strong word.

So for now, I am left with thoughts of “imagine…what if…if only…how great would it be…”  Breath.  We have made it through another day.  Another day is another day won.  A day lost is a day closer to seeing our eternal reward. #macsafighter and so are his friends!

This Wasn’t In Our User’s Manual

When you are told your child will be going through a minimum of one year chemotherapy regiment, you would think you would get a User’s Manual to help you through the journey or at the very least, a road map.  Well, they do give you a three-ring binder but you quickly find you are pulling out the provided pages and filling it with your own findings, medical journals, prescription regiment, and the like. Six months deep, we are starting to realize there are many things we were not warned about.  Sure, a social worker came and talked to us for about two hours before being discharged from the hospital and in Alabama, we had a personal social worker that would meet with us every visit–to, at the very least say, “hello” and to see how things were going.  They warned (or kindly advised) us of many things.  Many things, however, were left unsaid.  Feelings of distance, selfishness, how you will react to what people will say, what they will ask, or how they stare, and your your sudden willingness to chose sleep over eating  were all things we never even thought about until we were staring them in the face.

Well, now we are “settled” into our new lifestyle and we are starting to become aware of things we were not prepared for or warned about.  Let me be clear in saying that the support we have received has been nothing less than amazing.  We have received support in places we knew we would:  family, friends, church, and social groups.  Additionally, we have received support from places we never imagined:  friends of friends whom we’ve never met, churches who have in some way heard of our story and write us to let us know Mac has been added to their prayer list, and even complete strangers offering to do fundraisers.  It is hard–knowing your son is fighting a disease to which there is no known cure.  There’s not a shot, not a pill, and because it is an orphan-disease, little to no government funding is set aside to do any research in effort to find a cure.

With all these gifts of charity also comes the gift(s) of awkwardness.  The gift of space comes first to mind. Yeah,  I don’t think I’m a fan.  I told my husband a few months ago how I’ve noticed some people are overly apologetic when discussing their own day-to-day lives and feeling the need to say, “but I know it’s nothing compared to what you are going through.”  Let me be clear.  It’s not a contest.  Sick children, whether it be a runny nose, a bump on the head that leads to an ER visit, or just a child who put on their cranky pants and decides to wear them three days straight, are all things that can test any parent’s parameters of normalcy.  Additionally, these are all things that can lead to sleep deprivation for ALL parties involved.  And let’s face it, sleep deprivation is sleep deprivation any way you slice it.  We (you and I) are parents and we never like seeing our child uncomfortable.  No matter the cause, we want our children to be healthy and happy.  Just because our son has LCH doesn’t mean you can’t talk to us about how allergy tests made your child miserable, or how they are a picky eater, or the fact they’ve had a runny nose.  Even before Mac’s diagnosis, I would cry when taking the kids to the doctor and they would cry just having to stick out their tongue  to say “agh.”

The gift of space has also come in the form of, “I just don’t know what to say.”  Here’s the catch:  you don’t have to know what to say.  And if I’m honest with myself, even if you did know what to say, the odds are pretty good that I wouldn’t know what to say and would just start crying on your shoulder like a pre-menopausal broad watching a Hallmark Special marathon.  If you know us personally or know someone going through a trying time, just let them know you are thinking of them.  This is a gift which is free—doesn’t cost you a dime—and is a gift which has more weight to it than you could ever buy in a store.  It is a gift that can completely alter someone’s day for the better.  The power is in your presence, though it may not be a physical presence, you are still “being there,” for the people you love and who need you.  You don’t have to have an answer, you don’t have to say the perfect thing.  You being there is where the perfection lies.  I am often amazed how when fighting feelings of being overwhelmed or slightly psychotic it is at that very moment I will receive a text, email, or a card in the mail simply stating, “I’m thinking of you.”  And it is at that moment I take a deep breath and take that strength, that encouragement, to get me—to get us—through another day—getting us one step closer to having this behind us.

Another thing I have become very aware of in the past weeks are my feelings of selfishness.  Though I think it is 100% natural for a mother to pray (in earnest) for her child’s health and recovering, I am combatting feelings of praying a selfish prayer.  There are people who are sicker.  There are people whose survival rates are significantly lower, or terminal for that matter.  There are people with little support structure—personal and financial.  I was raised to pray, “if it’s in God’s will.”  Hmmph.  That’s kind of a copout when you think about it.  The doctors don’t have a cure but God is in control. There have been times when doctors have provided incorrect information, they’ve prescribed incorrect doses (that one was a little scary).  By praying in “God’s will,” it’s almost as if I’m saying, “I want him to be okay, but if you don’t want him to be okay, I’ll try to understand.”  When I’m praying, “dear God, please, please, please heal Mac,” it’s almost as if I’m questioning God’s ability to heal my son.  I know many of you may not have faith in God but faith or no faith, I think if your child is facing a long-term, life-altering disease you will be forced to reexamine a mightier power.  Yes, you can see science.  You don’t have to “believe” in it because it is there.  There is proof.  But ponder these phrases if you will:  “Your son is my first LCH patient.  There is no known cure.  Funding for research is minimal.”  So yes, I take my comfort in knowing that God knew Mac before he was born (Jeremiah 1:5), despite the doctors not knowing his name even after looking at his chart before walking through the door.  I take comfort in God having the power to heal all disease and affliction (Matthew 10:1).  And as far at little government funding, though it would be nice, I cannot even trust to government to deliver my mail properly so why would I entrust them with the life of delivering my child through a horrific disease?!  Rhetorical question.  No need to reply, “my dad was a postman.”

Do you know what else was not in the binder?  This equation: a (how much sleep you will lose) + b (how many fewer hours you will be sleeping with your spouse) and c (= a minimum of 2 to 4 cranky family members on a daily basis.  There are many nights, especially the past 8-weeks or so, we find ourselves sleeping in the floor of our son’s room as he struggles to find some comfort among the thrashing and cries of pain in effort to get at least a couple of hours of sleep.  My husband and I get very few hours of sleep in the same bed.  And yes, I mean real sleep—not the Hollywood version of “sleeping together.”

So what’s the point of this post?  Simple.  I must “trust in the Lord with all my heart and lean not on my own understanding” (Proverb 3:5).  I don’t need to understand why people feel the need to keep distance.  I don’t need to feel selfish in prayer and struggle to find the words when God knows my heart.  I don’t need to worry about my temporary physical discomfort when my son is fighting a much harder battle.  I don’t have to enjoy the ride but I can’t get off.  Even though I have feelings of “I’m done.  I don’t want to do this any more.  How do people do this for years on end?,” I have to accept it.  I have to let it define me and redirect me.

Turning the Ordinary into Blessings

A change in scenery, whether it be physical or mental, will undoubtedly alter one’s perspective.  I’m embarrassed to say it took Mac’s diagnosis to see the beauty is some of the most ordinary day-to-day things of raising a toddler.  Whether it be bathing, swimming, going to the beach, or even being able to wear a t-shirt, these were all things we used to take for granted.  No more.

 

Our boy in the bubble was starting his life of trying to not live in a bubble.  The bubble of, “he can go out in public, just not in large crowds.  He can play outside but cannot have prolonged exposure to the sun because not only will he be more susceptible to sunburn but it will actually alter the makeup of his medication. He can’t go swimming.  Don’t let him be around anyone you may suspect may have any type of sickness…even a runny nose they claim to be allergies.  He can’t take a bath.”  Yep, he can’t take a bath.  In a split second I realized that our nights of two toddlers in a tub leaving the walls, floors, and self drenched to the bone were over.  Well, for a year at least.  “Well, actually, Mrs. Howard.  He will have his central line 6-months post-chemo.”  Ouch.  Bath time used to be an indicator that the day was almost over–it was the last “chore” to be done before “mommy’s favorite time of the day.”  Bath time quickly turned into a constant reminder of Mac’s illness, a reminder that he is not a “normal” kid, and he is living in modified-bubble.  Funny how having something taken away from you makes you appreciate what you had.  This is where we cue hair band Cinderella, “Don’t Know What You Got (Till It’s Gone).”

Mac's kryptonite => Central Line

 

Now, we (Team Mac Howard) have walked down the path a little further.  We have a few more “wins” under our belt.  In this game of life-altering diagnosis &  long-term treatment plan, you count the wins—EVERY SINGLE ONE—for once, we lived in days of losses but today, we are WINNING.

 

Mac’s Broviac-Central line was removed shortly upon our move to Boston and a portacath was implanted.  The downside to this is obvious:  our poor little guy having to have yet ANOTHER surgery and yet ANOTHER scar on his tiny body.  The upside…you guessed it:  “real” baths, pool time at pepe’s, and t-shirts (onesies are now an option and not a requirement!!). The fear before is that he (or Bleiler) would pull or trip over his central line.  Heck, we will even let the guy play “naked baby” and run around the house.  Oh, and another win that most of you wouldn’t consider…the linen closet now has one extra shelf to store towels, washcloths, or anything.  In fact, I’m keeping it empty just to remind me that once, not too long ago, it was the holder of masks, gloves, heparin, saline, dressing kits, and all that other fun histio/cancer-fighting paraphernalia.  Life is all about perspective and Team Mac Howard is choosing to see the “wins.” I can be the adoring and semi-psychotic mother that takes a million pictures of him sleeping just so I can look at him when I am not around him.  I can watch the video of him swimming for the first time post-surgery over and over and still cry (every single time).  The biggest win is we have Mac.  I love him for his strength and the lessons and love he has taught not only us but complete strangers.  Mac’s a Fighter!!

 

Bath time w/ big sis:  WIN

Bath time!

Bath time!

Pool Time:  WIN

His face says it all!!

His face says it all ; )

 

Family Beach Day:  WIN

Cloudy Beach Day

Cloudy Beach Day

Church on the beach as a family:  WIN

This is the first time we have attended church as a family since Mac's diagnosis.  A HUGE win.  Thank you, God, and thank you, Genesis.

This is the first time we have attended church as a family since Mac’s diagnosis. A HUGE win. Thank you, God, and thank you, Genesis.