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.
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.
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.