Chemotherapy Cycle #1 Day #1

We have been absent from our family blog for one month exactly as our son Thomas was diagnosed with cancer. We were publishing over at CaringBridge (https://www.caringbridge.org/visit/thomaslauer/), but are now going to try to bring the two together seamlessly in order to continue the family blog I have written for 14 years. This blog post is copied from CaringBridge and is being published retroactively. Please subscribe to our family blog to receive updates as I publish!

As of this writing Thomas has completed his first treatment of chemotherapy, two drugs administered through his port.  Three plus hours after completion, Thomas has not yet felt any discomfort or nausea, however, that could occur any time within the first 24 hours.  We have been told that the more strong negative reactions of adults is not typical in children, mainly because the pediatric cancer drugs are not as strong and also because children are more resilient than adults.  We were admitted into the hospital for three days, where Thomas will always have either Chris or I right by his side.  We were both with him all day, but Chris went home and I am staying with Thomas over night.

Starting chemotherapy is a very strange milestone bringing a mix of emotions. On one hand, we felt relieved to be done with the uncertainty of the staging process, on the other hand, our precious Thomas having cancer still feels surreal to be sitting through informational meetings for hours with the entire oncology team.  We sat there learning about the potential for long term or even permanent side effects of the chemotherapy.

We employed two lovely babysitters covering 12 hours today with the other five children. A sweet lady delivered to the house a feast for dinner. 

Another lovely lady wearing a Marian blue dress dropped off a beautiful Catholic statue (Joseph leading the Holy Family to Egypt) to our children at home--without a card! If you are reading this, please let us know who you are so we can thank you!

Two philanthropic groups gave us gift bags laden with super useful stuff here at the hospital, including a welcome kit filled with bedding and toiletry items to help make the hospital stay more comfortable.

We met the pediatric oncologist who is on the "survivorship team," so she takes over patient management two years after chemo ends. It was helpful to see the other side of the coin, to get a longer view of Thomas's life. Also, this oncologist has a degree in Integrative Medicine so she can help us maximize benefits of Western Medicine while availing ourselves of anything more natural that might be of aid (while sorting out what is silly stuff or even damaging stuff).

The social worker talked with us about emotional, social, and financial aid.

The dietician gave me a whole binder to read. I've already read fascinating info: apparently kids undergoing chemo need not to eat just their regular food but about 50% more protein and 20% more calories than typical. I will have a new part-time job!

The Child Life Specialist was amazing, as always. She and the RN were so helpful in the process of accessing Thomas's port for the first time, which involved some anxiety for him but turned out to be very manageable.

Thomas experienced some itching around his port bad enough to cause him to cry, so I talked him through the Catholic practicing of "offering it up": uniting one's suffering with Jesus' suffering in order to strengthen prayer. Thomas offered up his terrible itching for a specific prayer request that had been given to us.

After getting settled into our hospital room, we met another stream of people. Thomas got to paint with the art therapist, so he was happy as a clam. Throughout the day, he created his own puzzle, played Legos, did his Hidden Pictures book, drew a lot, played a long game of I Spy out the window with his dad, listened to me read the Bible (his request), and watched Curious George.

At one point, a nurse came in to do a baseline echocardiogram: This chemotherapy causes premature heart aging, so a cardiologist will keep an eye on him for life. Anyway, during the echocardiogram, Thomas was so relaxed, he drifted off to sleep and took a great nap.

This chemo also could cause hearing loss due to a premature aging of hearing, so Thomas will be getting a baseline angiogram.

This chemo gives Thomas a 50-50 chance of maintaining his fertility, so he will be under the care of an endocrinologist at least all through his teenage years. I do not imagine our prayer warriors to be still praying for Thomas ten years from now, but our great God lives outside of time, so could I beg of you all a prayer as you read this?

Heavenly Father, if it brings you glory, please preserve Thomas's heart function, his hearing, and his fertility. May God's will be done.

Today was a day of learning all manner of things we did not even imagine about cancer and chemotherapy, and though we are just beginners, we know we have much more to learn.

Readers can imagine some overwhelming feelings as the nurse gowned up in all her protective gear in order to handle this toxic medication about to flow into our beautiful boy who was not even born in a hospital, has possibly never even had antibiotics in his life, and taken nothing stronger than Advil.

Our parental feelings aside, we could not be more loved on by our community, our extended family, and this wonderful medical staff--or by God!

My Catholic friends will appreciate that I blessed the hospital room with holy water and set up an altar with a tiny cross and icons gifted to us by my Aunt and the St. Jude electric candle gifted to us by the godparents. Thomas and I prayed our rosary, him clutching the tiny blue rosary from his sister. He was distressed at the thought of praying without Daddy, which I thought was a huge testimony to Chris's fidelity to leading the evening prayers nightly. At bedtime, Thomas remembered the St. Benedict stuffed lovey a friend gifted to him and requested to sleep with that one.

My favorite quote of the day: "I am having such a great time at this hospital!"  Let's pray that innocents lasts.