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Penelope Aguilera's parents look forward to celebrating at home on July 3, but if things go as they are now, they might be at the hospital instead.

July 3 is Penelope's second birthday.

"I wish she could verbalize what she's thinking and what she's feeling. I feel like she would, if she could talk, she would reassure us that 'It's going be OK, yes, this is going to be fine. We're going to get through this,'" said Penelope's mom, Amanda Aguilera.

Penelope has a rare cancer called multisystem Langerhans Cell Histiocytosis and has spent more than 10% of her life at Mary Bridge Children's Hospital in Tacoma, with parents Amanda and J.B. Aguilera by her side.

The couple is thankful they came in just under the wire for COVID-19 restrictions, able to have two parents accompany a toddler. Some families are limited to one parent inside at a time.

J.B. grew up in Mukilteo, going through elementary, junior high, and high school there before graduating from Kamiak High School. J.B. lives with his family of three in Federal Way now.

In her first 17 months, Penelope spent about 55 days poked and prodded, and waiting for blood count checks and other screenings.

Penelope has begun her second type of chemotherapy, and her mom said it will continue for a year, in monthly treatments. They will admit her to the hospital each time, and also rush to care if Penelope has a fever of 101 or more.

She is often connected to a nasogastric tube instead of eating. Her parents have seen as she was put in an MRI machine, X-rayed, scanned, scoped, and put through intravenous care that sometimes came with failed attempts that can cause bruising. For her weekly needle-change for an IV tube needed for nutrition and medicine, her two parents are instructed to hold her down until the needle is switched out, and the dressing replaced.

"We try to hold back, hold the tears back in front of her – or try not to show as much emotion as possible around her," said her dad, J.B.

The calm presence, he said, is achieved by a focus on the exact moment, and how to do what's needed to get Penelope healthy. Each step is a set of details that have to be processed.

Penelope has also had a bone marrow biopsy, three deep sedations and was put under general anesthesia once, he said. They have had to approve care that included oxycodone, knowing its danger but also seeing that she was in pain. In December, Penelope had a blood transfusion because during the chemotherapy treatment her red blood cells were dangerously low. In January, they learned she would need medication twice a day, likely for the rest of her life.

J.B. said sometimes when he is alone "it hits you like a ton of bricks" and the tears come. The process to change the needle on her IV tube, weekly, is "one of her least favorite things," her mom said, "It's rough."

But she bounces back.

Once the needle is changed, her parents say she is fine – as soon as the nurses left the room.

"She really does love her nurses. When she is feeling OK, she will wave and blow kisses to them. They are all so sweet to her and let her play with their name tags and the little toys they have hanging from their lanyards," Amanda said.

She and J.B. say they are watching their daughter as she misses a normal childhood, and they look forward to a day when she can live a regular kids' life.

Most of the time, Penelope's grandparents will house-sit, caring for the home and visiting Penelope's pets. They call on FaceTime so Penelope can see her golden retriever Annie; Papi a pug mix; and her cat, Harry. Penelope does not talk yet, but she smiles and laughs for FaceTime visits.

Blood counts, J.B. said, often determine if they go home at all.

Amanda describes other things they do to add some fun into her day.

"We FaceTime a lot with family, and she loves that – she loves it when our friends or family send over videos of their kids singing and dancing -- that's like her favorite thing is to see other kids. Even kids she doesn't know. I feel like it brings some sort of normalcy to her life."

Amanda said because of the precautions around COVID, "We really don't see any kids here at the hospital."

On one visit, a little boy across the hall left Penelope a gift, but could not play with Penelope.

We weren't allowed to meet him or anything, but he had heard her crying, and he made her a little paper crown and left it out."

The cost of a child's health

The entire path to wellness for Penelope was estimated at about a half million dollars before insurance, which they have through J.B.'s job. That's only an estimate. It's unclear what the final bills will be, by the time the Aguilera family is done. They will muscle through treatments and wait for a remission prognosis.

"We're new to this and still trying to figure out what we're doing. Our (insurance) deductible is $7,000 in-market. We are not sure how many years we will need to hit that deductible," Amanda said. "Lots of LCH children relapse over and over again until they are finally cured. We're hoping this will not be the case for Penelope."

Three more types of chemotherapy await, if this one does not work. The last one did not.

The Aguileras have started a crowdfunding site to help with expenses.

"I can't tell you how many different types of medication she's been on since February," J.B. said.

Waiting

The wait for a healthy life is a new set of longings that replaces the wait for Penelope's arrival. The Aguilera couple spent six years trying to get pregnant before turning to in-vitro fertilization treatments.

The month Paul Allen died, October 2018, was also the month of the couple's first positive pregnancy test. Amanda worked at Vulcan, Allen's company, as an administrative assistant. When Allen died, they made the decision for Amanda to stay home with the baby.

"We just didn't want any complications, and I didn't want her to have any stress – for anything to go wrong," so they made plans for Amanda to be a stay-at-home mom, J.B. said. He is a business relationship manager for Umpqua Bank, a solid role that made a single-income family life sensible.

"I felt like she wanted to be a mom so bad that – let's not let anything hinder that," he said.

It was July 3, 2019, at 8:22 p.m. when "we welcomed our miracle baby, Penelope Louise Aguilera into the world. She has been a blessing to everyone she comes in contact with, and is the best thing that has ever happened to us," J.B. said.

Penelope has consistently had trouble with digestion. She could not keep any solids or baby food in her system, he said, so they kept taking her to doctors, seeing multiple specialists for gastrointestinal care, and a physical therapist specializing in the mechanical aspects of eating.

"My wife nursed her through this whole process," J.B. said.

Penelope was scheduled for a colonoscopy at 12 months old, a procedure that is considered to be a minor surgery. It would be the first of many medical decisions that comes with a list of risks that they would review, and wait to see what might happen next.

Answers sought

Penelope was 4 months old when she first started getting sick, but at the time it was not clear what they were fighting.

Amanda was advised to cut various foods, to find out if food allergies were the cause. She cut dairy, then dairy and soy, then all of those plus gluten and eggs, and continued to nurse Penelope. It did not help.

When he heard of someone going through cancer treatment in the past "your heart goes for them but like when you're in it, it is completely different," J.B. said. The toll is emotional, spiritual, and physical – and extremely draining, he said. Sleep is rare.

All the worry started with a better outcome anticipated. But the food allergy theory seemed off, because Penelope was not getting better. By February 2020, Penelope was falling behind in developmental milestones.

Doctors kept looking for answers. Specialist visits were scheduled – a gastrointestinal specialist, and a physical therapist specializing in aversions to eating. Penelope bounced back again, but her digestive issues persisted and usually kept her from eating at all. In February, she came down with an upper respiratory infection.

"She started to refuse to eat anything, aside from nursing," Amanda remembered. "We weren't sure if she just had an oral aversion, on top of the suspected food allergies."

In February, "Things started to go downhill from there. She kept getting ear infections (and) would vomit whenever she tried to eat purées, until she eventually refused to eat them all together."

She was losing energy and regressing in her gross motor skills, J.B. said.

She was diagnosed with failure to thrive and referred to a gastrointestinal specialist. Her electrolytes were low and she continued to refuse anything by mouth except breastmilk. She kept losing weight, and by July 17 they were in the emergency room, at the advice of the newest specialist who had been working with them for a couple of months.

After a full week at Mary Bridge Hospital "we got the results," J.B. said.

Pulling together

She was diagnosed with a rare cancer called high risk, multisystem Langerhans Cell Histiocytosis, "three weeks after her first birthday," J.B. said. "Penelope began her chemotherapy and steroid treatment on the day we received her diagnosis. Her oncology team wanted to start as soon as possible, because the disease was found in so many different places throughout her body."

The pressure has sometimes taken a toll on their relationship, Amanda said.

"We are a normal couple," she said. "It's hard on a marriage to watch your baby go through the things that she's gone through, so we definitely have been at each other's throats a few times. We're definitely not like an example of a perfect marriage. But, luckily, we can talk to each other about it and be honest and support each other through it, as best as we can."

They keep pulling together, keep talking, but she said the pandemic has been in the way, for getting help. She said she'd like it if they could sit down with a counselor or find a support group to process.

J.B. said the reality of what they are enduring together is not always at the forefront.

"As a parent, when your kid's sick, you don't have to think about lows," he said.

Asked if exposing their private life to all has been difficult, he "anything we can do to help anybody is kind of our perspective on this," J.B. said. "It's like your mind's always – your mind has no time to rest."

Penelope has an Instagram page that shows photos of her and, of the 20 posted, most have a tube inserting into her nose. She is fed baby formula through the tube and gets all of her medications that way, her mom said.

She said their spiritual life is a support.

"Our faith in God has really helped us carry on and try to be as positive as possible and honestly just watching her be so strong," she said.

J.B. and Amanda Aguilera

Penelope Aguilera was diagnosed with multisystem Langerhans Cell Histiocytosis, a rare cancer.

On the Instagram page for Penelope is a Bible quote that the couple chose: "She is clothed with strength and dignity, and she laughs without fear of the future." – Proverbs 31:25.

"This scripture jumped out at us. We continue to be blown away by her strength through this whole journey. She endures more than any baby ever should, and she doesn't let it dull her loving, trusting and playful demeanor. We chose her hashtag #strengthlikepenny because for the rest of our lives we will be aspiring to have strength like she has. Watching her go through this has truly changed us," Amanda said.

HOW TO HELP

For those who want to help the family with the expense of Penelope's care, there is a crowdsourcing site available. Both links were sent to the Beacon by J.B. Aguilera.

And here is the gofundme account that was set up for her: https://bit.ly/34yxCgD. Her Instagram page is here: https://bit.ly/3awg74m.