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!
Do I update by telling a tale chronologically or by giving the most important news first? The writer inside of me struggles mightily with that question!
Tuesday overnight was very challenging for me and I got only three hours of tearful sleep--and not three hours in a row. In the morning, I hung on to the fact that I only had to wait through one more daytime and one more nighttime before we would have answers about Thomas's cancer.
I asked a neighbor friend to meet me at 6:30 a.m. and we walked two miles without kids: a little bit of normal, a little bit of health, and a hug.
I spent the morning making Thomas a 20-page photo album--just with paper from our printer in a folder I had on hand, not the professional kind I could have printed--so that he could take it to the hospital the next morning to show his Child Life Specialist and many of the friendly medical professionals he will meet when he checks in for chemotherapy. In the past, siblings were included very intentionally in the whole cancer journey because it affects every family member, but right now COVID-19 policies exclude siblings. I think it will be helpful for Thomas to "introduce" his whole family to the staff while he is there, and I've been advised by the Child Life Specialist that it will be helpful for me to take photos and videos of things Thomas experiences (like what his hospital room looks like) to show the kids back at home. I am grateful for modern technology when it is used for good like this.
While my one big goal was to nap when the little boys napped, sleep eluded me as I lay next to Thomas, watching him sweat in his sleep.
This week, Thomas is starting to show some symptoms of the cancer. When I found the lump, he was asymptomatic, which is common with neuroblastoma because it grows so rapidly. Our oncologist estimates Thomas's tumor began growing only 6-12 weeks prior and reached larger than a softball. Well, that was three weeks ago and the tumor keeps growing. For the past week now, I have noticed that Thomas is developing the start of the shadows around his eyes and constant sweating that are symptoms of neuroblastoma. His oncologist confirmed today that his urinary catecholamines were "very elevated" at last check, which explains the eye shadows and sweating (the tumor releases hormones). I also notice that Thomas is tired and weepy at times over seeming non-issues (which is unlike him).
Thomas starting to show symptoms is shaking me. Until now, my brain was still experiencing the psychological phenomenon of wishful thinking. I still think maybe the test was wrong. Maybe every test was wrong. Maybe the files got mixed up. How can my brain handle the cognitive dissonance that doctors are telling me our son has a potentially deadly cancer while I look at him so healthy and full of joy and life? I thought I was crazy until a friend sent me some writing about cancer and it turns out this bizarre wishful thinking is a known part of the cancer journey.
So, there is good news, unknown news, and delay to report.
- The good news is that the tumor shows favorable histology. This keeps Thomas in the Stage 3/Intermediate Risk category for now. Thank you, Jesus!
- The unknown is that one lab report is still not back: Is the MYC-N octogene amplified or not? If it is not amplified, Thomas's tumor will be Stage 3. If it is amplified, Thomas's tumor will be Stage 4/High Risk. THIS IS THE SPECIFIC PRAYER REQUEST.
- We will not be showing up at the oncology office Thursday morning because the test result is not in, but the doctor will call us the moment it comes in.
- The last news of the day is that the tumor is a GanglioNeuroblastoma (https://medlineplus.gov/ency/article/001436.htm).
"Ganglioneuroblastoma is an intermediate tumor that arises from nerve tissues. An intermediate tumor is one that is between benign (slow-growing and unlikely to spread) and malignant (fast-growing, aggressive, and likely to spread).
"Ganglioneuroblastoma mostly occurs in children ages 2 to 4 years. The tumor affects boys and girls equally. It occurs rarely in adults. Tumors of the nervous system have different degrees of differentiation. This is based on how the tumor cells look under the microscope. It can predict whether or not they are likely to spread.
"Benign tumors are less likely to spread. Malignant tumors are aggressive, grow quickly, and often spread. A ganglioneuroma is less malignant in nature. A neuroblastoma (occurring in children over 1 year old) is usually malignant.
"A ganglioneuroblastoma may be only in one area or it may be widespread, but it is usually less aggressive than a neuroblastoma. The cause is unknown."
Lovely D wrote me today some tips and tricks about getting through chemo. They caused me to weep.
I am still glad she wrote them because the doctor is telling me that as soon as we have test results, he is going to try to admit Thomas immediately for chemotherapy (same day? next morning?). Days actually matter. Therefore, I would have no time to prepare for chemotherapy at all. It is a great gift that my friend described to me the side effects Thomas may actually experience and all the comfort items I should prepare now to bring along and how I should pack them. I value my friend D for sharing with me honestly something exceedingly painful--shockingly painful--for me as a mother to anticipate watching because she knows how much worse it would be for me to be sitting there helpless and unprepared.
(Why don't we just start some chemo now, you might ask, like I did? Nine days is a long time to delay treatment! If the doctor takes a stab in the dark, he will have to prescribe a formulation of chemo that will not be exactly suited to the tumor. It might have no benefit at all, but Thomas would suffer all the damaging effects. The doctor does not want him to do a "useless" cycle of chemo, thus we wait until we have lab results.)
Amidst my tears today, I want to share that today God sent me bird feeders which are something that I enjoy so much. Have you ever noticed that God sends us sweet, wee gifts just to delight us, just to remind us that He is still here?
In the past week, both chipmunks and squirrels have tried to take up residence in our garage. Each time we go out there, we encounter these brazen rodents! This morning I determined to figure out why they were showing up and discovered a bag of bird seed I had forgotten was still in the garage. The rodents had gnawed open a hole and were stuffing themselves to their heart's content.
I decided we would just fill up all our bird feeders with the bird seed to get it out of the garage . . . only to discover that all our bird feeders broke over time and were thrown away. How did I not remember that? Or did I even know it when it happened? I don't know, my mind is in a fog. I boxed up the bird seed and wished I had bird feeders, but with innumerable other cancer purchases to make--small, medium, and substantial--I was not about to buy bird feeders.
Mere hours later, I received a text from our wonderful neighbors of 12 years, the R couple, who had downsized to an apartment a few weeks ago. They could no longer use their wonderful collection of bird feeders in their new apartment and could they please drop them off to our home?
They showed up bearing muffins for tomorrow's breakfast and three high-quality, durable bird feeders--not the cheap kind I buy that break!--and a whole new supply of three kinds of bird seed.
I recognized right away that the Holy Ghost was afoot and providing just a little sweet distraction, knowing that I like to fill bird feeders and watch birds, even when our son has cancer.
🙏 🙏 🙏
SPECIFIC PRAYER REQUEST: Please pray that Thomas's ganglioneuroblastoma does NOT have an amplified MYC-N octogene.
Lovely D wrote me today some tips and tricks about getting through chemo. They caused me to weep.
I am still glad she wrote them because the doctor is telling me that as soon as we have test results, he is going to try to admit Thomas immediately for chemotherapy (same day? next morning?). Days actually matter. Therefore, I would have no time to prepare for chemotherapy at all. It is a great gift that my friend described to me the side effects Thomas may actually experience and all the comfort items I should prepare now to bring along and how I should pack them. I value my friend D for sharing with me honestly something exceedingly painful--shockingly painful--for me as a mother to anticipate watching because she knows how much worse it would be for me to be sitting there helpless and unprepared.
(Why don't we just start some chemo now, you might ask, like I did? Nine days is a long time to delay treatment! If the doctor takes a stab in the dark, he will have to prescribe a formulation of chemo that will not be exactly suited to the tumor. It might have no benefit at all, but Thomas would suffer all the damaging effects. The doctor does not want him to do a "useless" cycle of chemo, thus we wait until we have lab results.)
Amidst my tears today, I want to share that today God sent me bird feeders which are something that I enjoy so much. Have you ever noticed that God sends us sweet, wee gifts just to delight us, just to remind us that He is still here?
In the past week, both chipmunks and squirrels have tried to take up residence in our garage. Each time we go out there, we encounter these brazen rodents! This morning I determined to figure out why they were showing up and discovered a bag of bird seed I had forgotten was still in the garage. The rodents had gnawed open a hole and were stuffing themselves to their heart's content.
I decided we would just fill up all our bird feeders with the bird seed to get it out of the garage . . . only to discover that all our bird feeders broke over time and were thrown away. How did I not remember that? Or did I even know it when it happened? I don't know, my mind is in a fog. I boxed up the bird seed and wished I had bird feeders, but with innumerable other cancer purchases to make--small, medium, and substantial--I was not about to buy bird feeders.
Mere hours later, I received a text from our wonderful neighbors of 12 years, the R couple, who had downsized to an apartment a few weeks ago. They could no longer use their wonderful collection of bird feeders in their new apartment and could they please drop them off to our home?
They showed up bearing muffins for tomorrow's breakfast and three high-quality, durable bird feeders--not the cheap kind I buy that break!--and a whole new supply of three kinds of bird seed.
I recognized right away that the Holy Ghost was afoot and providing just a little sweet distraction, knowing that I like to fill bird feeders and watch birds, even when our son has cancer.
🙏 🙏 🙏
SPECIFIC PRAYER REQUEST: Please pray that Thomas's ganglioneuroblastoma does NOT have an amplified MYC-N octogene.
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