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.


7 thoughts on “LCH: It’s a Love / Hate Relationship

  1. Amanda, you guys rock. I’m left speechless. I so appreciate that you’re writing this blog. It’s a reminder not to take life’s great moments for granted (i.e. the day-to-day moments). I especially love this quote,”Afterall, I’m a strong believer that you should not hate something that cannot hate you back.”

  2. In tears reading this. You cannot imagine the testimony your strength and faith, and positive attitude even in the midst of the frustration, exhaustion, sadness, and otherwise devastion have on those around you. Somehow, in all of this, you have managed to be an encouragement to others. ❤

  3. I love that you are able to express yourself so eloquently. I don’t know that I could that nearly as well. The hate part breaks my heart to read and breaks it again because it is your reality. I know God doesn’t give us more that we can handle and I know all things work together for the good of those who love Him and do according to His promise. I know all those things and more but when the rubber meets the road it’s whole new ballgame. I’m so very proud of you and Ricky for walking your faith walk so bravely and so well. It seems so shallow to say your reward will be great but it will indeed. The example you are setting for those around you is amazing and beautiful. Keep the faith and I will keep the prayers going. Love to you and yours.

  4. Thank you for sharing, not so much for me as i have a front row seat (almost) but there will be someone who stumbles across this blog and it won’t be by coincidence. Within it they will see the faith of you and Ricky and what true friendship is; that a burden shared is a burden divided, a joy shared is a joy multiplied. You are right about Mac’s laughter. He doesn’t know it, but to an old man it is “health to my bones”.

  5. Amanda, I just read through your whole blog after you linked it in OHF on facebook, and I just want to say that your son, you, your husband, and your daughter are all in my thoughts. I was diagnosed with LCH when I was 2 (in 1989), and unfortunately I am all too familiar with the reality of “the rest of your life.” But I also want to tell you something. Through years of health problems, memories of chemo as a toddler, three hospitalizations in the past two months (not LCH-related, but long-term health problem related), frustration, anger, anxiety, and depression – I am still here. I still fight most days to believe that it is worth it, but I think that will pass. I have a level of closeness with my family that few others my age know. I have an appreciation for the good days because I know also the bad. I’m starting grad school in a couple of weeks, getting a degree in Theology. Not because I even have any idea what I believe spiritually, but because I found a program (at Emory) that will let me explore that in their Faith and Health focus. Yes, I’m going to grad school to try to sort this all out. I’m wanting to study how spirituality affects medical decisions, etc, because of the things that have happened to me. Do I hate the daily limitations? Do I hate not knowing what the future holds? Do I hate my body many days? Yes, yes, and yes. But I also appreciate beauty and ended up in this strange field of study because of those days that I spent in the hospital, wondering what this all means. There is hate and love on both sides of LCH and all that comes thereafter. But sometimes “the rest of your life” really isn’t. I have a friend who was treated for LCH at the same time I was – he had 2 relapses of his multi-system LCH. Now he is finishing med-school without a single health problem. None. We are two sides of LCH. But neither of us would be who we are, where we are, without it. No one can foretell where Mac will end up. But I promise you that it is probably not someplace you now imagine. Maybe he will end up like me, with loads of chronic health problems, but the gift of a unique perspective for a unique field of study. Or maybe like my friend who is healthy and on his way to being a surgeon. But along with the hate, hold on to the love each day.

    I will continue to follow Mac’s story, and if you ever want to talk, you can find me on facebook if you search the members of OHF. Lots of hugs and positive thoughts as you await your appointments in Boston. Dana-Farber is amazing. One of my sisters is a surgeon and she did a fellowship at Boston Children’s (and residency at Mass General) so she knew a number of doctors there and had utmost respect for them. I hope that you find nothing less than the best. Stay strong, little Mac!

    • Anna, thank you so much for taking the time to share your story in relation to ours I love the fact you are selecting a career in hopes of affirming your faith–a bold step and what I hope you are very proud of. I will talk to you soon!

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