This is Holly. If you don't know her - you should. She is a Girl Scout Daisy, a Goolsby Greyhound and a huge Arianna Grande fan. She is fire, spunk and right now she needs our help. Holly was misdiagnosed in May and last week her mothers Aimee and Tara Clark-Newberry received the devastating news that she has cancer.
This diagnosis has completely turned the Clark-Newberry world upside down. Aside from mounting medical bills, they have to make significant renovations to their home to prep for Holly's return and chemo treatments (removing and replacing carpet, air purifiers, generators, etc mentioned below), and as the family is not able to work outside the home nor invite outside help because of concerns of infection, this will cause significant financial strain and loss of income.
This is from a recent update from Tara:
Holly is very sick. She was misdiagnosed in May. The former surgeon on the team should have removed her kidney on May 3rd but didn’t. A follow up renal ultrasound happened on June 3rd and we were scheduled to get results June 25th. Aimee took Holly to the surgeon earlier in June because she was not eating, she was tired, had belly pain and just looked sick. The Dr. said she was sad and had PTSD, that we needed to get her out more & that she could ride bikes and go boating and didnt order any additional scans. She said the ultrasound was fine, her kidney was enlarged but she expected that and ordered bloodwork to see if she had anemia.
The blood work came back June 24th/25th and her labs were abnormal. The former surgeon said she wasn’t concerned. Aimee and I knew something was wrong. Aimee took her to pediatrician on Monday who didn’t like the labs and ordered a repeat and a CT. The CT showed a massive tumor & the Peds PA called Aimee and said to take Holly to the ED. She was admitted and underwent multiple diagnostics to try and figure out how to treat her. One surgeon said it was another hemotoma, the other said it was a mass but either way it needed to come out.
The decision was made to operate on Tuesday. We tried to get her on the schedule early but she was scheduled for 2:30 pm on Wednesday.
I share custody of Evan (10) and Emily (8) with my ex-wife. Aimee has full custody of Holly & Whitney (8) and then we have Georgia together. I have raised Holly since she was 2, she’s almost 7. June 30th was Georgia’s 3rd birthday but we didn’t celebrate it because we wanted to wait for Holly. We have a perfectly imperfect modern day Brady Bunch. Evan & Emily were due back with Adele Newberry and her wife Lindsay Powers on Wednesday. They lovingly offered to keep Whitney and Georgia so I could be with Aimee and Holly at the hospital, so I dropped all of the children off with them in the morning and went to the hospital.
Our surgeon operated on another baby in the morning Wednesday who tragically died on the table and as a result Holly’s surgery was cancelled. We were disappointed but felt for that family who lost their child and were so grateful that ours was still talking to us and accepted we would have to wait till Thursday.
The former surgeon was replaced by the Chief Pediatric Surgeon and scheduled for Thursday at 7:30am. A couple hours after they took her into the OR the surgeon and oncologist came out to give us the devastating news. The frozen section showed malignancy. The earth shattering and heart breaking news followed that they couldn’t close her abdomen.
In addition to having a massive tumor she now has adhesions everywhere. They couldn’t ressect the tumor as a result and because of the pressure and swelling had to leave her abdomen open. She has a wound vac and has been battling to get her fluids and breathing stable enough for them to perform a partial close procedure, ideally 2-5 days post op. The new surgeon and oncologist agreed a slow close would be safer and allow for the swelling to reduce gradually to avoid abdominal compartment syndrome.
She did ok while on paralytics Thursday and Friday morning. As they reduced the paralytics on Friday afternoon she started moving and fluttering her eyes and squeezing our hands. But her heart rate went up and so did her pain and dependency on the vent.
I picked up George on Friday night so she could see me and sleep in her bed. Whitney wanted to stay at Adele’s house with Emily & Evan.
Friday night was torture for Holly. She was in so much pain and suffering and her vitals were a roller coaster. Aimee woke up to the nurses bagging Holly around 5:45am which was terrifying. The meds were adjusted and she became more stable. I dropped Georgia off at Adele’s Saturday morning and returned to the hospital.
We had hoped they would be able to start closing Saturday but Holly was holding fluid and her heart rate was too high and they couldn’t wean her Peep down enough to safely do it.
The plan was to reduce her fluid retention so they could operate Sunday. But at 6pm Saturday night her urine output just wasn’t there so they said maybe Monday. We were crushed. After adjusting things a bit and probably because Holly is so stinking strong she started letting that fluid go and we found out around 11pm that she is likely to have surgery at 8am Sunday (update on Sunday afternoon: surgery complete and 75% closed with another surgery to be scheduled).
I know so many of you want to feed us and our children and I truly appreciate it but we’ve been underwater since Thursday and don’t know which way is up so my sister being the leader of my family stepped up and started organizing. My family is all in Ohio and Texas and I have no relatives here in Vegas. They all want to come but the oncologist said it was too risky for anyone to travel because of Covid. They all want to help us and I know this has been so hard for them because they can’t come and just do everything for me right now. Aimee’s family is all in California & Washington but they can’t come either because of Covid, but our chosen family of Vegas has been remarkable. We love all of you so much and as life often goes, adversity brings out character and we are seeing all of your strength and generosity and are truly touched, humbled and grateful. The oncologist also said we should not introduce anyone to our circle of germs besides who is already in it, so thank you everyone who has offered to babysit, but we just can’t expose Holly to anything and have to rely on Adele and Lindsay for right now. I am so incredibly grateful for them.
Both Aimee and I truly struggle to ask for help from anyone. I have had a hard time with that my whole life and as many of you know I am stubborn and independent and determined to take care of everyone else, and refuse to let people help me. But Thursday broke me.
We need help.
So much help and I have no choice but to ask, which is truly truly hard for me to do, but Holly needs us and Aimee needs me at the hospital as much as possible.
During Holly’s May admission I couldn’t be there at the same time as Aimee because of phase I protocols, so we had to switch out which was hard. Now we can both be with her. Holly gets really agitated when we are on the phone so we don’t take calls unless we can go down the hall. We have a second room on the peds floor because they are not full & PICU doesn’t have showers, so we go down there to have tough conversations and to eat in, and for Aimee to shower, thank you Jonquil Whitehead and Heather Hall for making that happen for us. Holly is the sickest child in the hospital right now. We have watched patients come and go from the PICU. Every 20 minutes or so hear the baby lullaby song that lets everyone know that a new baby has been born in the hospital. It’s incredibly painful to hear, but we are saying “Someone just got a chance to have themselves a Holly”. I heard two back to back today and thought it was twins and it made me think of my twin nieces. Which made the rest of them easier to hear today.
Thank you for joining this page and reading this far, I wanted to explain where we are and who our family is to this group of close friends and colleagues & give context to why we haven’t answered every text or call or message. We love you and appreciate so deeply the help, it’s just been tough to get things going outside the hospital and honestly I couldn’t eat between Tuesday and Friday. Neither could Aimee. The kids have been doing well with Adele but are devestated too. With help from Child Life we explained to them in an age appropriate way what was happening and they are taking it as best as possible. They are all stepping up in their own way to help. Even Georgia. She asked me to take Aimee a snack at the hospital when I offered it to her this morning. She is so sweet.
Once she is closed they will leave her on the ventilator for 2-5 days and will start chemo to try to reduce the tumor and melt the adhesions.
Once she is closed, Aimee and I will start a split schedule of one at the hospital and one at home with the other children and to try and work. We will be in Summerlin Hospital till August but once she’s extubated and improves enough we will move from the PICU to Oncology.
We have to do the following to our house to make it safe to bring Holly home:
1) No dogs because of bacteria they could track in. Thank you Tommy Michelle and Kathleen for taking care of our dogs.
2) We have to remove the carpet upstairs in the house and change to easier to clean flooring like sealed wood. We are going to leave the one room downstairs with carpet but will replace it with new clean low VOC carpet where Holly has her Barbie dream house so she can sit comfortably and play when she is feeling better. The rest of the first floor is already tile and wood.
3) No visitors and no contact with anyone outside our household other than oncology clinic.
4) HVAC system secured and deep cleaned and ducts sanitized after flooring work. New high grade HEPA filters installed.
5) We need 3 Hydroxyl generators to clean the air and keep it pure for Holly. I am working on getting the specs for those. They are expensive.
6) Need to have backyard sanitized from the dogs so her siblings don’t track in bacteria.
Visitors aren’t allowed in the hospital.
Please send us positive energy and hope for our surgeons to have the best day of their career.
Thank you for loving Holly.
This Gofundme page has been created to help cover the expenses related to making the Clark-Newberry home safe for Holly, medical and related expenses.
- Nancy Brayton-John
- Audrey Shaddock
- Lisa Sutton
Organizer and beneficiary
Las Vegas, NV
Aimee Clark Newberry