Just before Aleina turned 2 yrs old, she started making these frowning faces, more like “mugs” to communicate her displeasure or defiance. She’s a master now but also learning to verbalize more. Those moments of independence can be trying yet also funny and rewarding; watching her grow, learn and become more and more independent. Her favorite shows right now are Cocomelon, Word Party, and Sharkdog. She also enjoys music.
Aleina was diagnosed with Rhabdomyosarcoma in October of 2020 when she was just 10 months old. Since she was so young, we had suspected she had fallen and hit her nose. However, her nose continued to swell, appearing to be a cyst on the inside of her left nostril. One day, Aleina would not stop crying, although previously she appeared unbothered by the swelling. Her cries led us to take a trip to the ER. That visit to the ER led to a referral to an ENT. After several appointments with ENT, it was decided surgery would be the best option to remove the cyst and biopsy it. Though the doctors were almost certain the cyst would be benign, we were given the devastating news that was not the case.
Aleina had an initial surgery to remove the cyst and a separate surgery for port placement and bone marrow aspiration.
Once her treatment began, she completed 4 weeks of Proton Radiation. She began Chemotherapy in November 2020, just after her first birthday, and recently started the maintenance phase of chemo.
One of the struggles we have faced is Aleina’s inability to communicate when she is not feeling well so we go by her nonverbal cues. Additionally, Aleina has nephews around her age (yes- nephews) so their ability to interact and bond is affected by her symptoms, treatment, etc, especially during this time of COVID. Lastly, of course financially as we are using FMLA to provide care. Since Aleina was diagnosed shortly after being born, most of my annual leave was depleted, and having to start over often means unpaid leave and having to decide which parent gets to be the “support” on any given day. Ideally, we would both like to attend treatment and appointments but are unable to due to financial obligations.
Cancer certainly makes you re-examine life and what is important. Things that seemed so major before, pale in comparison to watching your child literally fight to live! Having to use such harsh chemicals as a treatment model is also devastating, however, this journey has only strengthened our family. Though our faith sustains us, we are also human and in that humanness, we have cried more, laughed more, and just cherished the moments a little more.
Hope Session by Red Door Photography | Facebook