I was so honored to be able to capture the last day of Josiah’s chemo. The end to a very difficult 9 month journey which is best told by his mom, Melissa.
Hi I’m Josiah’s mom. The past two years have been the hardest of my life. It’s been a roller coaster so hang tight, here it goes! In July of 2015 we welcomed sweet Josiah in to our world. Two months later, my husband decided to walk away from his family. That was a punch in the gut. Fast forward to the end of October, I dropped Josiah off at daycare where later they called to tell me they found a lump on him. So of course I had him checked out! His pediatrician told me it was just an infected lymph node, prescribed some antibiotics and sent us on our way. A few weeks later the lump grew in size so I took him back in and they, again, prescribed antibiotics. After no change again they referred us to a pediatric surgeon. The surgeon strongly recommended excision due to the location of the lump and their lack of being able to identify exactly what it was. December 14, 2017 he went into surgery to have the lump removed, the surgery was uneventful (thank God) and I was told it would be sent to pathology. The surgeon said not to be concerned, it was protocol, and we would have results in 2 weeks. I was called with results 2 days later…..
I was oblivious to what was coming, I never even considered the “C” word.
The surgeons body language made the results obvious. I can’t remember much of what he said because it felt as though I was underwater. Several appointments, ultrasounds, MRI’s, PET scans later his diagnosis was: Extra-renal Wilm’s Tumor. I was told his diagnosis was the rare of the rare. This type of cancer normally presents on the kidneys, which causes the patient to lose the kidney if not caught in time. This rare presentation of cancer had become Josiah’s blessing as the removal was far less intrusive than it would have been if it were on his kidney. Can we talk about rare? When Josiah joined us Earth side he was born en caul which only happens to every 1 in 80,000 babies: rare. When the surgeon first described his diagnosis as rare I thought, “God certainly has something unique planned for this kid!”
Next came the treatment plan: 25 weeks of chemo and 10 consecutive days of radiation. How do you digest that? Slowly, that’s how.
With every chemo I hoped and prayed it would get easier to hold my lil guy down as they accessed him, but it never did. They described the pain as pressure but his tears told me different. I fought for understanding and hope some days but then was sweetly reminded that every day was a new day of health and healing that would be provided by our Heavenly Father. I’ve never had to lean on my faith as much as I’ve had to over the past 2 years. Every time Josiah would ask me “whats that?” as he touched his port with confusion, every time he looked me in the eye with the “help me mom” look but I had to allow them to continue, I had to call on a special kind of peace that I now know only the ultimate Provider, King Jesus, can provide. In the midst of my “numb”, He was there. What I described as feeling numb for the longest time I now identify as the Lord’s presence in each moment, giving me strength to not fall apart like my mama heart wanted to!
Speaking of falling apart (and because we are being real here right?), around his 6th chemo treatment, out came his hair. In chunks. All over the house. Covering his carseat. Clogging the bathtub. Bath time was terrifying, I feared that with each scrub I would create a new bald spot. And I did. Yes it was just hair but it was one more thing that made it all so painfully real. Josiah’s prognosis was good but that didn’t make the hair loss, the holding him down, holding my breath for lab results, or explaining why Josiah was always “grumpy” easier. It all sucked. BUT in true Jesus fashion, in the midst of all of those raw emotions his hair loss caused, He allowed me to experience my arms being lifted and prayers being said in my silence as the village He so faithfully gave me covered me in that moment. They came to my home, prayed over me and my boys, and even left encouraging sticky notes all over my home! What a God-moment that was!
To spare you an hour of reading, here are just a few more God-moments/blessings I’ve experienced:
– My Family. Even though most are over 8 hours away they still managed to provide support and wrapped their virtual arms around us 🙂 Thank God for family.
– Latrice. She became Josiah’s nanny right before he was diagnosed which ended up being perfect because we would have had to pull him out of daycare. The Lord provided before we even knew we would need it.
– Cheryl and Alison. I can never properly describe the roles these 2 women of God filled for me and my boys during this season. I could try but we would be here all night. Driving partners, emotional support, and much more. I love you both!
– Lifepoint Church. This church has been more than 4 walls. More than the place I love to worship or fall to the alter when I’m weakest. They’ve been like family, financial and emotional support.
– Monetary blessings. From fundraisers created by complete strangers to friends that remodeled my home to create a play room for my boys and the random money showing up in my mailbox or account that was right on time!
– Donated PAID leave from complete strangers and friends. Over 200 hours have been donated which has allowed me to be away from work for his treatments and not lose pay!
– Bear. This is my oldest son. He prayed for a baby brother and has fulfilled his role of big brother beyond what most 9 year olds are capable of. Josiah ADORES his Brother Bear!
– As of July 12, 2017 Josiah is CANCER FREE!!!
I’ll leave you with the scripture I held on to tightly and still do! “We have this hope as an anchor for the soul, A hope both sure and steadfast.” Hebrews 6:19.
Hold tight to the hope that only Jesus Christ can provide. He will anchor you when the waves get too rough. Thats a promise.
In the waiting room. This is Josiah’s stank face.
Helping mom sign the med board.
The Oncology nurses are so great! They get to know each child and how they respond in order to make the process smoother with things like stickers and games.
There’s always a little time for fun before things get hard.
“Brother Bear” showing Josiah how to open his mouth for the Doctor!
This is the hardest part of the whole process. Hard for baby and really hard for Melissa. She says its a numbing feeling and she has to check out mentally and emotionally in order to avoid the urge to throat punch the nurses (Melissa’s words). Haha
That’s totally the Mama Bear instinct kicking in to defend her baby. But she also understands that they’re just doing their jobs and speaks highly of them!
These photos here are right after he has been accessed, where they stick a needle into the medi-port for pre chemo blood draw and where he will later receive the chemo.
This is favorite infusion nurse, Jan.
A little play time while waiting for the blood work and chemo to be made.
Before giving the Chemo, the nurse has to flush the port with saline. When they do this, Josiah experiences an overwhelming taste of salt in his mouth which he hates! Nurse Jan was so sweet and would sing the “Salty Water” song and it helped to distract him. One of the many reasons he loved her so much!
The lollipop was a small effort to keep the nausea at bay.
Now he is getting hooked up to the chemo…
Poor baby 🙁
Right after she was done, he hugged her and said “thank you”. Was it thank you for helping or thank you for stopping? either way it was so sweet!
Last chemo complete and mamma getting him ready for the celebration thats behind the curtain… They do a surprise party for each kid after chemo is complete.
This is Josiah’s favorite Oncology nurse, Kim who even though she just moved to a different job, made a special trip over just to celebrate with him!
The relationships between these nurses and their patients are incredible. They become like family.
This is all of the Oncology and Infusion team! Happy last chemo Josiah!!!
A big shout out to Dr. Brown who is amazing!!!
At last, the moment that seemed like it would never come!
A bitter sweet goodbye!