Team Lilly- Supporting the Taylors

Background: As most of you know in the beginning of June 2023 Lilly had a health crisis during a weekend getaway to Scottsdale AZ . In the previous months Lilly was having nose bleeds 3 to 4 times a week, headaches, and leg pain. The last 2 weeks of May she began to feel very fatigued.

Lilly was seen by her pediatrician in Durango on June 3, 2023. Considering all of her symptoms, in addition to pale skin, the doctor recommended running blood work, which was done June 8th- on the family's way to Scottsdale.

On June 9, 2023 her pediatrician called and insisted they get Lilly to the closest ER, which was Children's Hospital of Phoenix. Lilly's hemoglobin was 5.1 RBC 1.4, WBC 1.8. Children's Hospital ran lots of blood work and Lilly was hospitalized for 6 days. She had a both a blood and platelets transfusions. In addition, Lilly had 2 bone marrow biopsies.

Update: The second bone marrow biopsy confirmed June 30th that Lilly has Aplastic Anemia, (bone marrow failure). It's a condition that occurs when your body stops producing enough new blood cells. The condition leaves Lilly fatigued and more prone to infections and uncontrolled bleeding. It's rare and serious condition in children.

Currently the doctors have several blood panels for genetic testing pending. They are hoping to have those results sometime over the July 4th week. They've also been told that Lilly will need to be within 45 mins of the Children's hospital for an estimated 6 months. This is due to Lilly's blood levels needing to be closely monitored twice a week to see if she needs blood or platelet transfusions.

Next steps: Tucker, Lilly's brother is being tested July 3rd to see if he is a match to be Lilly's bone marrow donor. Sibling donors are the best choice for bone marrow transplants. If Tucker is not a match, they will do Immunosuppressive therapy. Both of these treatments will require Lilly to be hospitalized 3 weeks to a month. Raymond plans to take care of things back home in Colorado with Tucker. Julie intends to remain with Lilly in Arizona where they were able to secure long term housing in Chandler, near the hospital. (Address Below)

Why Help: Raymond is a selfless, hard working Veteran who dedicates his time to helping other Veterans in his community. Julie has such a big heart and is constantly trying to help animals and people in need around her. Both have put in time volunteering for various organizations in our community and both are still working hard to keep up with finances, however, Julie will have reduced hours to be able to care for Lilly, making regular bills difficult to keep up with, not to mention all the new bills coming in. Sweet Lilly, despite the challenges she is facing, keeps a smile on her face and is doing her best to maintain a positive attitude. They are a wonderful family; extremely deserving of kindness and your generosity.

How to help: Although the Taylors do have insurance, they will have an abundance of co-pays and their portion of Medical Bills that are going to be stacking up for the next 6 months or longer. In addition, Raymond would like to travel back and forth so the family can be together when he is able, which will incur additional gas charges. If you have the ability to bless them financially so they do not have to worry during this difficult time, it would be greatly appreciated.

Update (July 23rd):

On July 3 Tucker was tested to see if he was a match to donate his bone marrow to Lilly. He was not a match so we looked into the additional options. The standard of care for patients with Aplastic Anemia is to get immunosuppressive therapy which has a 70% success rate, however, it’s not a cure for the condition.

On July 17th the Taylors met with the Transplant team who explained there is a study Lilly could participate in. The study that has been in the works for several years and enrollment just opened up in the last 3 months. Lilly would be the first patient at the Children’s hospital in Pheonix to participate in the study. In the study, they transplant bone marrow from non-related donors that are a 9 out of 10 match to the patient. This has shown to have an 80 to 90% success rate. They already know this, but are conducting the study to prove those numbers. In addition to the transplants, the study also studies immunosuppressive therapy. A computer program chooses whether or not the patient in the study receives the bone marrow transplant, or the immunosuppressive therapy. It’s a 50/50 chance that the patient could get either treatment.

The doctors put Lilly’s name in the computer and within 30 seconds they found out she was blessed to have been given the bone marrow transplant option! This is great news because as of now, that is the only true potential cure as where the other option was just a treatment.

They currently have 42 matches for Lilly but the Doctors have narrowed it down to a few non-related donors. Once the donor is solidified, Lilly should be getting the transplant in 6-8 weeks. There will be lots of testing and preparation in in the meantime.

Lilly will have to undergo chemotherapy and radiation so she has a very long road ahead of her. The doctors specified that Lilly may need to remain in Phoenix close to a year. This is because when she is released from the hospital, Lilly will still need to be within 30 miles of the Children’s hospital due to her having a central line in place and being at risk for infection.

We will update everyone again as we move forward. As always, thank you again for all the support and prayers. God is opening up so many doors for Lilly and we are so very thankful for all of our family and friends and the way you’ve continued to bless the Taylors!

The transplant procedure will be similar to a blood transfusion for Lilly. The donor’s bone marrow will be collected on Sept 20th. The bone marrow is then hand carried onto a plain and flown to Phoenix children’s hospital. The donor is a 20 year old male and we are so grateful that he was willing to do this for Lilly!

After the transplant, Lilly will be hospitalized for 6 to 8 weeks. If anyone is wanting to visit her at Phoenix children’s hospital she is allowed up to 4 visitors at a time. If you are wanting to send something to her in hospital room the hospital has guidelines as to what is not allowed in the room for example- She is not allowed to have flowers or plants in her room.

9/26/23 Update

Yesterday Lilly had a pretty rough day. She was feeling very sick and vomiting but also had abdominal pain. Her transplant team ordered an ultrasound and X Rays. They couldn’t get a good look at the appendix , so they ordered a CT scan which unfortunately showed Lilly had developed appendicitis.

In a regular patient it’s a cut and dry case but for Lilly there are more risks involved. With Lilly having just undergone chemotherapy for her Aplastic Anemia, her immune system has been completely wiped out to prepare for the transplant she received.

The Surgeons agreed best coarse of action is to send Lilly into surgery to remove her appendix later today.

Update: November 23rd

Lilly and Julie were able to go back to their apartment in Arizona however Julie is monitoring Lilly’s health and maintaining her IV fluids and antibiotics every few hours day and night.

Unfortunately, after being discharged they are still making multiple trips back to the hospital due to Lilly spiking fevers and needing to be treated for infections due to her immune system still needing to be built back up.

Right before Thanksgiving, Lilly was admitted back at Phoenix Children’s Hospital again and she is undergoing endoscopy surgery today. She’s been struggling to eat and drink and losing weight the last few days because she has been so nauseous.

November 1st Update

Lilly was admitted Tuesday before Thanksgiving for being dehydrated and struggling to eat anything so Thanksgiving was spent at PCH. Raymond and Tucker came and had turkey dinner in Lilly’s hospital room. They were glad to have their family back together but it wasn’t quite how they planned it.

This past Tuesday Lilly had a NG tube placed also called a feeding tube to help with feed’s while she was getting her nausea under control. She has been tolerating the feeds well and doctors planned to discharge her Thursday.

The last 3 nights Lilly’s SPO2 dropped to 85 , so she was placed on Oxygen just while sleeping. Her oxygen continued to drop to 88 while on 1 liter of oxygen.

Wednesday they took a radiograph of her chest and it came back negative but her oxygen levels still continued to drop .

Thursday the doctors did a CT scan and sure enough found some areas in her lungs that look to be fungal or Viral Infection.

Friday she is scheduled for procedure called a brachial Wash to see what is in her lungs and then treat it.

Lilly is trying to stay optimistic but it’s definitely getting challenging.

December 15th Update:

Lilly was released from the hospital on Wednesday night . Starting Sept 12 to December 13 Lilly has been in the hospital except for 20 days of that time frame. She is doing so much better now that she is on steroids for treating idiopathic pulmonary syndrome.

She is on a decreasing dose of steroids but with the steroids have caused some side effects. Her blood pressure is high so now she’s on a blood pressure medication daily. Her blood glucose has been high so now she has been started on Insulin.

She’s having to be on a restricted diet which is really hard for a 13 year old at Christmas time.

March 30th Update

Lilly has continued to be admitted at Pheonix Children’s multiple times since Christmas. She’s battled many illnesses and complications since then. She saw a pulmonologist last week who performed a pulmonology function test on her, showing results of 54%, which is very low.

Lilly’s body is attacking the bone marrow transplant. She has started a new medication called Rezurock for the GVHD graft versus host disease . Her cells attacking her donor cells.

She had been on an incredible amount of steroids to help with her idiopathic pulmonary syndrome. This has caused her face and belly to be incredibly swollen, requiring her to have CPAP machine to breathe at night. Her team is trying to lower the dosage but are concerned about long term issues with her lungs if they lower the steroids too quickly. Her team is working hard to come up with solutions for her.

May 3rd Update

About 1 month ago Lilly started having lots of pain in her legs. At one of her appointments one of the PAs was doing her exam and noticed Lilly’s upper thighs on the back of her legs and buttocks area was hard as a rock. One of her bone marrow doctors came in to also take a look.

They have determined that Lilly now has GVHD graft versus host disease which can happen after a bone marrow transplant. That’s where her body is attacking the new donor cells in her body.

The doctors have started her on a new medication for the GVHD and she is still on high doses of steroids which causes her face to be swollen 3 times than normal and her abdomen to be swollen as well. Lilly is on a decreasing dose of steroids so over several months will go down on the dose.

Lilly is been pretty down about being in pain so much and just wants to feel normal again. She is missing home so much and of coarse, misses her horse, her cats, and her dog Dreamer.

Thank you again for all the love and support from family and friends! Please continue to pray for sweet Lilly and her family!