The dynamics of a family of 6, how faith played a major role, and the impact of a 2-year-long cancer treatment.
Disclaimer: this post narrates childhood cancer and treatments that might be upsetting for some readers. This post is published for information, with the purpose of sharing an experience from a mother about the journey she went through with her family, and should not be used as medical or physological advice.
In 2017, my niece, Trinity, was diagnosed with Leukemia, at almost 3 years old. While I could go on and on about how that impacted our big family in general, it doesn’t even begin to compare to how it crashed their own household.
Surviving cancer at age 5 was a big statement of faith, discipline, and why her mother, Crystal Phippen, is my overall superhero.
The way Crystal deals with life is not only amazing to see, but also inspiring. From caring for her husband and 4 kids, making a home, and homeschooling, I can confidently say I don’t know how she manages to stay sane.
Which is why I am so beyond thrilled that she has agreed to share a little bit about her story on today’s “From Moms to Moms”.
“The biggest take away for me was just a huge reiteration that life is short, so enjoy every day to its fullest. Take the trip. Buy the dress. Give the hug. Have a big party.”
Crystal Phippen
If you, or someone you know, has gone through this or other experiences where the outcome was not a cure, don’t hesitate to check out the last From Moms To Moms piece, where my good friend Alyssa gracefully gives advice on how to help a grieving mother.
By Crystal Phippen, August 2021
I am the oldest of six kids, very active, very headstrong, a very independent extroverted introvert type of person. My husband, Shawn, and I met when I was in college at Valdosta State University. I went on to get my teaching degree after we married, worked in the high school math setting for 6 years until the birth of my oldest son, Zeke. From that point forward, I have been a homemaker, caring for my now 4 children, 3 dogs, 4 chickens, half-acre yard, and homeschooling… doing all the things that entail.
Finding out that Trinity, my almost 3-year-old daughter, had leukemia.
My story of Trinity’s cancer diagnosis started a bit before her 3rd birthday (December 29th). December of that year, she was really sick. She had a fever off and on for days that prompted me to take her to the doctor and have her checked. She ended up testing positive for flu A, flu B, and strep. I do not think she had ever had a sick visit prior to that one. She was treated with antibiotics and an antiviral drug (the first and last time I’ll ever use that drug, but that’s a different story).
A few weeks later, at her 3-year well checkup, she showed as anemic, which I found odd since she was my good eater.
I asked the pediatrician for a chance to try some vitamin supplements for iron deficiency and scheduled a follow-up. Sometime before that follow-up, she had a day where she cried and cried and complained of her back hurting, which I found odd for a child her age.
Her “back” got worse thru the evening and added the additional ailment that she refused to stand on her legs, and I ended up sleeping with her on the sofa trying to comfort her, planning a way to take her to the doctor the next morning.
Throughout the night, I did the “doctor google” thing, searching for backache and anemia possibilities in young toddlers. By the time morning came, I was convinced that she likely had kidney disease and may need surgery or dialysis, etc.
My trip to the doctor ended up taking all day and we waited around in a waiting room most of the day. The doctor basically ended up being “puzzled”, but very concerned, and wanted her to go to the hospital for extensive testing to determine what was going on.He later stated he had a very real suspicion that she likely had leukemia. When she received the actual diagnosis, I was shocked but not completely blindsided because, as I mentioned, dr google had me suspecting something fairly serious.
3-hour commute to treatment, and how Trinity’s siblings got impacted by this journey.
I had two other children when Trinity was diagnosed.
My husband was home with her older brother, Zeke, and younger brother, Levi. At some point when things got “bad”, I called my parents and my mom prepared to come down to help care for the two boys while we dealt with Trinity.
Unfortunately for Levi, I was still nursing, so he basically went cold turkey, poor kiddo. Trinity went from our local hospital in an ambulance transport overnight to a children’s specialty hospital to begin her treatment immediately.
Our church family stepped up and stepped in to assist with transportation for Shawn to the hospital while I rode with Trinity in the ambulance. Between my parents and our church, everything was “handled” while we went with Trinity to Jacksonville, where she was being treated.
Levi was only 17 months or so and he didn’t understand much but that sister was sick and we were trying to help her get better. Zeke was 4.5, very intelligent, and very much his sister’s sidekick. We always answered any questions that they had honestly, prayed for Trinity together, and got them back together as soon as we could.
Getting pregnant and giving birth mid-treatment.
During the course of Trinity’s 2-year cancer treatment, I became pregnant with our 4th child.
He was born about a year and a half into her treatment. The biggest concern on that front was the timing of the pregnancy coinciding with the beginning of the fall semester at the college. He was actually induced for convenience so that I wouldn’t go into labor at an inopportune time.
Beyond that, I was able to just bring him along with me during her clinic and hospital stays. I breastfed full-time and did a lot of baby-wearing, so it was not entirely inconvenient.
The biggest thing I did with that pregnancy that changed BECAUSE of Trinity’s treatment was I got into a free placenta stem cell bank program under the thought process that familial stem cells could be beneficial if her treatment did not go well.
The “new normal” and how the dynamic of my household changed – while still remaining the same.
Before Trinity’s illness, I was already a very scheduled mom. Since my babies were young, I had a printed-out daily schedule that I kept in the diaper bag for “just in case” a sitter came.
Zeke had allergies so it was important for me to have food restrictions and suggestions indicated. Because of that need, I had kept a fairly up-to-date written schedule so a sitter could “be me” as much as possible if needed.
My mom bore the brunt of assisting on long-term stays as she could. Our church also paid for us to have a nanny for the recurring treatment days. Those days I might be gone for 6-12 hours or even overnight. When I was gone overnight, the nanny would stay with the children until my husband got home at night and he would take over once he returned from work.
Shawn, of course, had FMLA to help with his needed appointment outings. Beyond the outside help, I still continued to maintain all the household chores. On occasion, our church might do a meal train thru a specifically tough treatment round.
For the most part, a good bit of Trinity’s treatment occurred at home. She took chemo pills daily at home, steroids monthly, etc. Some appointments were weekly, some biweekly, some monthly. Some appointments she could do a day trip to Jacksonville, and some she had to stay overnight.
There was also the added difficulty that anytime she got a fever she had to go to the ER which was a huge change for me…I basically never took my children to the dr for an illness. There were several family trips or holidays where I ended up in the ER in Atlanta or we had to spend a week in the hospital during flu season.
My mom or the nanny often helped with the boys at home during that time. During treatment, Zeke started doing kindergarten work at home on a fairly normal basis, but that first year he likely didn’t get full-time schooling.
Part of that led me to repeat him in kindergarten, but the other aspect was that he was not reading like I felt he should (I suspected and later determined that he was dyslexic, but his late summer birthday didn’t make me feel guilty repeating his schooling).
I tried to keep my children’s schedules as normal as possible. I did drop out of homeschool activity day and bible study (for the first year anyway). By the time the second year of treatment came, we were back in most activities and basically dealt with them like “normal” people outside of having to go to the ER for any fever… and avoiding germy indoor playgrounds.
How does having a child with cancer can impact a family.
I’m sure I still don’t know all the ways Trinity’s illness has affected our family.
It was, and likely still is, triggering for my husband, whose mother died of cancer. Zeke is definitely still super close to Trinity and they often get asked if they are twins. Levi likely suffered going cold-turkey nursing with mama being away so much.
More than anything I tried to promote normalcy, fun, and family thru it all. Even now, Trinity’s Jacksonville checkup days are an opportunity for our family to all go on a “road trip” and make it a beach day! We have found favorite parks on the beach, Levi has found a favorite turtle sighting location, we have found favorite hotels, etc.
Keeping my mental health during Trinity’s treatment.
I have always been fairly in tune with my body, in general. Through each season of life as a mom, I have actively sought out someone to relate to me where I am at that moment in time. MOPS (Mothers Of Preschoolers) groups, bible studies, mom’s night out, etc.
Trinity’s illness was no different. I reached out to other cancer moms and Facebook groups for support. I was able to “break down” in those groups and not be judged, get advice, brainstorm ideas for problems I was having, etc.
I tried my hand at the online “journaling” (never, ever my strength) and basically updated people on what and how they could pray or help. At one point, a doctor friend was even instrumental in obtaining a specific medicine that was in short supply after my update.
The worst parts to deal with.
Trinity’s treatment lasted about 2 ½ years. I’m not sure she processed through the illness yet.
I do think that gifts became one of her “love languages” through the course of treatment since she was given gifts and treats after every appointment and by all kinds of people.
The worst parts of it for me were watching her when she was in pain and not being able to do anything about it (often having to hold her down for painful procedures) and having emotions myself with her ‘roid rage incidents and medication side effects where I just wanted to throw the whole toddler out (but felt so guilty for having such feelings through her struggles).
For my husband, (not knowing how he feels entirely) I’d say one of the absolute worst things was watching his baby struggle with an illness that ultimately took the life of his own mother and he was triggered frequently but had to remain “strong”.
The final treatment and how we celebrated.
In my mind, Trinity will never actually be “cured”. Cancer is tricky like that. Doctors don’t currently know what causes cancer and all the drugs they use to treat cancer often actually cause cancer or other lifelong issues.
So, I just try really hard to enjoy every day of life, enjoy family, take trips, enjoy time… because I feel like “it’s only a matter of time” (which, technically it is for all of us).
Trinity had an official “end of treatment” date that we did celebrate big with friends and family and got a bounce house water slide (something we typically can’t do), and tried to make a big deal of being done taking medicine.
She was only 5 at the time and her mental maturity somewhat froze during her 2-year treatment, so at the time she functioned much lower emotionally. She and her siblings were just excited to celebrate.
The lessons I learned and how they imprinted on me forever.
The biggest takeaway for me was just a huge reiteration that life is short so enjoy every day to its fullest. Take the trip. Buy the dress. Give the hug. Have a big party.
And, BUT GOD. I seriously do not know how anyone, ever, has been able to get through a traumatic experience without the love of God. It blows my mind, really. HOW? People and God. The most important things and lessons in life are all about those, and that’s where our time matters most.
If you are going through the same situation…
- Lean on God. I don’t know how anyone could get through something so traumatic without knowing that there is a good God who loves you (and your child) more than you could ever imagine NO MATTER WHAT the outcome.
- Always find a support person/group and use it!
- Don’t feel bad about taking time to do something to help you feel good about yourself.
- Allow people to help if it’s helpful.
- Try to maintain as normal a life as possible.
- Be positive.
- Let people know if you are struggling or need ideas. Outside ideas often help in ways you didn’t think of initially.
Thank you so much to Crystal for sharing her journey and experience!
Please drop a comment below for Crystal, Trinity, and their family. I’m sure it will warm their hearts up!
Aunt Kathi says
Crystal my beautiful neice you inspire me with your love and dedication. Your journey of faith and trusting God with your life and your family. I was devastated when Trinity was diagnosed with leukemia my fear was real in that I had lost a child of my own. (Although not to leukemia) My prayers for strength for you were answered with amazing grace by God. You are so right HOW? Do people survive tragedy without God? Being a cancer survivor I will always have a special place in my heart for Trinity, (and yes chemo brain and roid rage are real things). My prayers for her and you as you continue a journey that no Mom should ever be on. Our heavenly Father holds both you and Trinity close to Him and continues this journey with strength that can only be found in Him. I pray that I will find some normal once again and that we will again be able to travel and visit you and your precious family. For now I hold you and Trinity up in prayer that remission well be life long. As well as that Trinity will come to a full understanding of the saving grace of our Lord Jesus!
evelynrountree says
Couldn’t agree more, aunt Kathi. Crystal is amazing and Trinity is a blessing to the family! <3