Lakyn vs. Aveolar Rhabdomyosarcoma

Lakyn is my sweet six-year-old niece, daughter of Chelsey and Andres.

Just before completing Kindergarten this year, her mother picked Lakyn up from swim on April 18th, after she’d been at her dad's during the weekend. When she got her to the changing room Mom noticed the veins on Lakyn's chest looked strange, they were very pronounced and you could see blue lines all over her chest. Mom felt her chest and the veins felt distended. She immediately took a picture and sent it to Andres and asked if he had noticed her chest. He sent the picture to his dad who said she needed to see the doctor. They then sent the picture to the doctor who said it was from her being in the shower and the water.

They then took her to the other pediatric doctor and they did bloodwork and everything came back normal. The following week Andres called Chelsey over to look at Lakyn and feel a bump he found on her chest. This was new. There was now a lump towards the medial right of Lakyn's chest. The next day they called the doctor and requested a CT due to the changes and still no answer as to what was going on because her veins still did not look normal. The only other symptom was an ongoing cough that Lakyn had had for some time… months. They chalked that up to allergies.

April 26th- Lakyn got the CT. They were told they would get the results and a call that night, no news is normally good news.

April 27th- They received a call from the doctor apologizing profusely that no one had called her with the results and she would be taking care of that, and the results showed a mediastinal tumor 5.5x5.5 cm on Lakyn’s chest. The doctor said she was admitting Lakyn to the PICU at St. Francis.

The same day the doctor called with CT results stating a malignant neoplasm mass was found, Andres and Chelsey picked Lakyn up from school and drove to the hospital where they did a biopsy and port placement

April 28th- The doctors met with them after the biopsy and said it was presented to be in the leukemia/lymphoma family.

May 1st- They got the news they could not determine what type of lymphoma but it was definitely a malignant tumor in Lakyn's chest. They got discharged to home on Wednesday evening to further await results from St. Jude’s pathology team.

May 5th- They got the call that it was determined to be a rhabdomyosarcoma and care would be transferred to St. Jude’s in Memphis.

The 2nd CT they did at St Francis showed the compression on Lakyn's superior vena cava and trachea. The compression on her SVC was causing SVC syndrome, and affecting her airway which induced the ongoing cough.

May 6th- Lakyn was referred to St. Jude Children's Research Hospital in Memphis, TN, and will travel there this week with her mother, father, and grandfather. She will be there for roughly 21 days to complete additional imaging, a bone marrow biopsy, genome analysis, and also receive her first round of chemo.

May 10th, 9:54 am- From Chelsey:

"We made it safe and sound, we have a full agenda today and tomorrow with a PET scan today and bone marrow biopsy tomorrow."

Specific prayer request ~ Lakyn is able to lay still during the PET scan we opted to not have her sedated as she has done so well playing statue during other procedures, Lord keep giving her courage and joy through this journey. We are praying nausea and vomiting stop altogether. Lakyn got sick this morning before breakfast, possibly just nerves and so many changes. Pray for new friendships and friends on similar journeys.

PRAISE Report ~ Lakyn and I made friends here, Lakyn’s friend is 5 yo and has a tumor causing right eye blindness. Her mom and I are both nurses! Meeting another mom who is having all similar feelings and experience is reassuring, and reminds me I’m not alone in this. God’s got US!

May 10th 12:56 pm- From Chelsey:

"Lakyn is going GOOD, we are waiting for them to give her the nuclear medicine, then it’s very important for her to remain still, and not move about or it makes the medicine go through her system faster. She will have to have the medication administered and wait for an hour and then the pet scan will take 20 minutes so we are occupied for at least an hour and a half. We’ve got a movie playing in a quiet room so she’s just relaxing. Everything is good right now. After her pet scan, she wants sushi."

May 10th, 5:20 pm- From Chelsey

"Gods in control!

We got the diagnosis from the PET scan. Stage 3 aRMS. Aveolar Rhabdomyosarcoma. We are getting IP’d so staying inpatient tonight and starting CHEMO! The tumor is putting compression on her trachea and the SVC syndrome is flaring up again."

May 11th 8:40am-From Chelsey

"Hard night but manageable.

They started at about 10 and finished around midnight. Had dry heaves at 4 am. She has to get up and pee every 2 hours so the medication doesn't sit in her bladder which could cause her to lose the feeling in the muscle and she won't have the sensation to know when she has to go.

Having to get Lovenox shots due to blood clots.

Need prayers nausea and tummy pain are better managed. Currently in pull-ups due to diarrhea and accidents."

May 15-From Chelsey

"Lakyn Update & PRAISE REPORT~ Our sweet baby girl is tired, but doctors are happy with how she is responding to treatment. Her nausea and tummy aches are diminished if not completely gone. Appetite is back and she’s eating very well!!"

"We get 2nd round of chemo outpatient on Wednesday. That will be day 8 from the first treatment and we may start to see her energy diminish more as WBC dips further down, right now counts are all GREAT!"

"Thank you everyone for keeping us lifted in prayer!! God is so GREAT! Faith can move mountains and I want to let everyone know we appreciate so much the continued thoughts and prayers. "

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St. Jude is amazing in that the family will not receive any medical bills, and travel expenses for the patient, mother, and father are covered. That's where this fundraiser comes in.

With many trips to Memphis ahead of them, Lakyn's two siblings, Peyton and Tatum, as well as grandparents, travel will not be paid for. Each stay in Memphis is roughly 20+ days, leaving Lakyn, Chelsey, and Andres away from family quite often.

Chelsey's co-workers have been very generous and donated four weeks' worth of paid time off. In addition to travel for family members, any monies earned will be used for typical household bills for when Chelsey's PTO runs out.

*I will continue to update this as I receive more information.*

-Kaylee