Today, marks 2 years since we were allowed to go home the first time after our initial 6 1/2 week stay at St. Jude Children’s Research Hospital in Memphis, TN.  I’ve kept a detailed journal of my son’s entire cancer journey since the beginning.  Recently, I’ve been looking back on some of those early journal entries and can honestly say some of it is still hard to read.  It brings back a flood of exhausting emotions and stressful memories.  It makes me incredibly grateful for God’s deliverance through the worst part of the storm and thankful my son is still thriving with 25 months of chemo treatment behind him and only 6 more months to go.

He receives a particular chemo once per month that causes him bad leg pain.  Lately, his pain meds aren’t helping much, either.  He received the chemo on Friday.  Yesterday (Sunday), he felt great and played hard.  Last night, the pain hit at bed time and he was in tears and couldn’t get comfortable to fall asleep.  I think most parents would agree when your child hurts, you hurt and will do whatever it takes to make the pain go away.  Although the pain meds don’t always help, I gave him a dose in hopes to take the edge off.  When the pain medication kicks in, it messes with my son’s brain.  He feels like the room is spinning, his pupils look smaller, his eyes look glassy and he begins acting overly sweet and loving.

“Mommy, I love you more than anything in the world.  Mommy, you’re the best singer I’ve ever heard. Mommy, I just want to snuggle.  Mommy, I love you.  Mommy, I just want to snuggle all day.  Mommy, you’re so cozy…”  I’ll be the first to admit I love the extra snuggles, kisses and compliments.  But, it’s also heart wrenching as his mom to know he’s acting like that because he had to be medicated to help the awful chemo pain go away.  It makes me angry at cancer and it’s treatments. Thankful for the treatment options available, but angry he even had to have the treatments in the first place.  But, I choose to believe God is in control and He has a plan.  After my son finally fell asleep, all I could do was lay there, pray and cry, then cry and pray, asking God to continue to watch over, protect and heal him.  Asking God to replace my fears with faith, to replace the enemy’s lies with His truth and to replace my doubt with His confidence.

James 1:2-4 says, “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”

As the caregiver, often times, the helpless feeling that accompanies a critical illness seems too much to bear.  I know it can always be worse, which is why I sometimes feel guilty for letting it get me down.  I think we can all agree it’s much easier to be joyful on the good days, but it’s more difficult to be joyful on the rough days.  Good news, though!  God’s mercies are new each morning and He is faithful to bring us through the darkness.

Lamentations 3:22-24: Through the Lord’s mercies, we are not consumed because His compassions fail not. They are new every morning; Great is Your faithfulness. “The Lord is my portion,” says my soul, “Therefore I hope in Him!”

Side Note:  May is Brain Cancer Awareness month.  If you’ve followed this blog since the beginning, you’ll know our family has been forever changed by witnessing how DIPG affected an amazing little guy close to our son’s age and his family.  There is no cure for DIPG…0% survival.  This is only one type of brain cancer, but the suffering involved is awful.  If you have a chance to donate or support brain cancer research, please do so.  Jaxon, you’ll never be forgotten!