Yesterday was a day we had waited for impatiently and dreaded simultaneously. Jonathan would receive his radiation plan from the team at 9 am and then have surgery to place his port and have his lumbar test.
The ‘port’ is a piece of plastic less than an inch long that is inserted into the chest above the heart. The port is used to administer medications, retrieve blood draws; anything an IV would be used for. No more sticks! Yay! It is under the skin and NOT exposed unless needed, so the maintenance is MUCH easier than William’s line’s dressing changes, infection prevention, and inability to bathe.
The lumbar was like a spinal tap. The MRI showed nothing cancerous in his spine, but checking is required. BOTH of these hurt when one wakes from anesthesia, which isn’t easy for Jonathan anyway. Perhaps he has some redheaded genes after all. If the lumbar test shows cancer in the fluid, he needs high dose radiation. If not (PRAY HARD!) he can get a lower dosage, which means FAR FEWER side effects. Side effects include impaired cognition, growth, etc. You know, those scary things we’re used to facing.
He was cooperative, polite and very kind all morning. He charmed everyone with his newsboy cap and matters. I was quite proud to see him walk up with great eye contact and check himself in by name in a clear voice, patiently re-spelling our last name a few times. (Get used to it, Kid.) We took a 2 hour break to see the park and get some sun!
PLOT TWIST: The Johns Hopkins radiology-oncology team is superb. The adult waiting room was a sea of humanity, overflowing with about one hundred people. The pediatric floor was empty and the nurses were darling. The team informed us that there were TWO radiation options– Proton and Photon. Here is your science lesson for today. Middle school moms, this counts as double homework time, so the chocolate or cookie is earned.
Photon therapy is like x-ray radiation; it would be concentrated to areas of the brain and spine but would pass through, like x-rays through a wall. Some would pass through to other areas of the brain and organs like the heart and bowels. Protons- like the ones Mrs. Frizzle taught about– are the denser pieces of the atom. They basically reach a target and stop, like a toddler’s requested applesauce being hurled on a clean wall and falling to the freshly mopped floor. The benefits are still in working theory, but the benefits are proving to be less damage to the brain that results in developmental delay and more protection to the organs. Thus, this treatment is largely encouraged for children. Considering Jonathan’s situation already, we want to give him his best advantage.
HOWEVER, Johns Hopkins won’t have photon radiation ready for another year. The two closest locations are CHOP (we can’t move and commute to Philadelphia) or…Maryland– which is about ten minutes in traffic from Johns Hopkins. Within twelve hours they had reached the Maryland team, checked with insurance and set up a consultation for today, in about 45 minutes. We will receive plan details, but we assume it will be similar.
Meanwhile, William and I have 4 appointments today as well. My bag is loaded with snacks like a Kindergarten Zoo Day chaperone.
Jonathan came out of surgery well. He cried off and on, refusing to eat and struggling with his throat from the aspirating tubing and the surgery, which runs a line through the jugular. May we take a moment to marvel at medical advancement, please? THANK YOU. He also had orange staining from the iodine that looked like an unfortunate self-tanning accident, which reminded me of my 20s. Trauma for all.
He fell asleep by 9pm and we relished the hours. 2:30am arrived with great misery. The next hour held the childhood suffering that parents dread. Suffice to say, pain and trying to understand what hard, foreign object was under the skin of his chest was a challenge. It took both of us to calm our disoriented, pained son. My husband put an identical covering and bandage on his own chest in the same area to help. After administering medication, showering him, changing clothes and reading books to calm him down, he fell asleep around 4 am.
Trying to explain temporary pain for long-term benefit is difficult, but to a person in suffering it is Herculean. My inability to carry or hold my son due to my unborn daughter is difficult- the plight of most mothers. It helps to know that God fully understands how it feels to watch his Son suffer– but I can’t explain how this shreds the heart. Watching him rest peacefully just a few hours later feels like crossing a great finish line. Hearing him whisper-sing “We are weak but He is strong” is salve to the soul.
Today he is bandaged, fed, and off to another hospital with his favorite stuffed animal, playlist of soothing songs and his father– the strongest man I know. I’m thankful to call him my husband. We are just shy of 11 years of marriage; he has battled wars for all of it, battled cancer alongside our sons for three of them, and fought over how close dirty socks land to the hamper for about 5 of them. He is leading our family to serve the Lord and follow Him. We are living as those who will be evaluated and judged for how we obey and believe. Eternity will outlast these years. Likewise, we believe that the reward promised and pleasing Christ is worth it. Please continue to pray for us and for the souls of our sons.
More news coming soon.
With faith, hope and love.
***Added update: Jon will have a sedated CT and radiology tests tomorrow morning to help the radiation team prepare. Tentatively– because EVERY plan has changed at least once so far– treatment will begin October 31. Scary indeed!