Layla's story,

Layla Grace Marsh was born November 26, 2007. Layla was the youngest of 3. She had 2 older sisters, Claire and Jenna. Layla was a healthy baby. She had always been 80 percent for weight, a great eater, and a great sleeper. Layla had a great 15 month check up. At around 16 months though, her sleep habits and appetite started to change. She also became more irritable. In mid March, her appetite began to decrease. At the time, Layla's parents thought they were just dealing with a picky eater. At the beginning of May, Layla woke up with a swollen eye. Her parents took her to the doctor and she was treated for an ear infection and the doctor said the swelling was because of the infection. At the same time, they noted her belly was hard and somewhat distended. She hadn't had a bowel movement in a few days and they were concerned she was becoming constipated. The next day they took Layla to the pediatrician who put her on Mirilax over the weekend and told her parents to call back on Monday. By Monday morning, Layla wasn't eating at all, still no dirty diaper, her activity level had increased, and she was rubbing her belly and lower back saying "owie." Her pediatrician referred her to a GI specialist to see why she was so constipated and not eating. On Thursday, May 7, 2009, as they sat in the GI specialists office expecting to be told she would need some kind of treatment for constipation, they instead heard like "cancer" and "leukemia." A series of xrays and tests were ordered and they were sent home to wait for the results. About 5 minutes after they walked into the house, they got an urgent call from the GI specialist saying the test were in, that things were not good and that they were to bring her to the ER immediately and a team of doctors would be waiting for them. Layla had a massive tumor in her abdomen. I extended from about her left kidney (adrenal gland), around her side, over her belly, and wrapped around her aorta. In addition, she had low bone density which meant the cancer had also spread to her bones. Layla had her first surgery May 11. After surgery fluid was around her lung so they had to take her back to the OR, put her under anesthesia, and put in a chest tube to drain it. It was confirmed it was neuroblastoma like they thought and it had already spread to her bone marrow and most of her bones. She also had a tumor behind each ear and one behind her right eye. Layla started chemotherapy on May 15, 2009.  On May 20, Layla's left lung (with the fluid around it) partially collapsed. The doctors said it was the chest tube and when they took it out it would expand normally. Her chest tube came out May 25! Layla was suppose to be admitted to the hospital on June 9 but while they were waiting to get her a room, Layla spiked a fever. Blood cultures were drawn and it was determined she had a blood infection so she couldn't start round 2 of chemo. One June 12, they learned it was a bacteria that clinges to the tubing and is resistant to medication. So, her central line was removed. The next day her IV's collapsed and she was not about to get another so the decided to put another one in instead of her not getting anything for the next 2 days if her cultures came back negative. She started round 2 of chemo June 15. On June 27, they got good news! Scans showed the tumors behind her ears and eye were gone! The abdominal tumor hhad shrunk by 50% and the surgeon was confident he can remove the entire thing when she went in for surgery (July 9th)!! It was no longer wrapped around her heart, diaphragm, or kidney, and it was not pressing on her spine anymore. There were fewer lesions on her bones, and the ones that still remain are smaller and not as intense (not as bright on the scans). Layla went into surgery again July 9, to remove what was left of the main tumor. They also scrape daway at the cells that were covering the spleen, kidney, heart, lungs and were entangled in the lymph-nodes. She also had no cancer cells in her bone marrow. Round 3 of chemo started July 22. August 1, Layla had fluid in her abdomen. Layla had another surgery August 4 to drain the fluid. Layla had another surgery on August 13 to replace her central line that tore in the PICU 4 weeks earlier. Only one side had being working since then. August 18, Layla began round 4 of chemo. She was admitted again for round 5 (and lost!) on September 9. September 12, Layla spiked a fever and she had a central line infection. Layla was sent home and then readmitted because she still didn't feel good. She was treated like it was an infection. October 14 was Layla's first day of radiation. October 30 was her last day! She had NO side effects the whole time! Layla then had her centr line grow yeast. She had her line removed immediately. Layla was suppose to start her bone marrow transplant on November 9 but Layla had a fever. After 3 more attempts, she finally started November 19. Layla had her last chemo on November 24! November 25, Layla recieved her stem cells back! The day before her 2nd birthday! On day 9, Layla started getting ANCs! They grew to 1200! Then, Layla spiked a fever of 104.5 for 36 hours. The next day she had no ANC and her liver enzymes ha gone from 1000 to 4400. Normal is about 500. They thought she was in beginning stages of liver failure. They sent for a CT scan which showed her liver wasn't in any stress and looked good. She was tested for ever possible virus, bateria, and fungal infection. Nothing. Her Dr's had never seen this before. A transplant either takes or doesn't. You get ANCs and they continue to grow or they never grow back. They don't come in strong the disappear without some type of infection. Layla was scheduled for a bone marrow aspiration on December 14. The doctors wanted to give her the weekend to start producing the proper cells, and if she did, she’s wouldn’t have to go through the procedure. The weekend came and went. Still no neutrophils. She went into the OR for a bone marrow aspirtation and biopsy. They went into both sides of her pelvic bone with a needle and took out bone marrow fluid. They then went in again and took out a small piece of bone marrow. A few days later they got the news they were parying for. All the players were in the marrow, they were just very very immature and not detectable in the blood yet. Her high fever killed them all and they are just taking a long time to re-create and grow. 4 days later, her ANC was 200! They like to see it 3000 but it was a start! Layla wa able to have month break from the hospital before she went back January 22, 2010. That was the day that changed everything. While they were bombarding her body with chemo and radiation, while they were poisoning to the vergeof death, while she was unable to move in her bed from pain, the cancer was growing and multiplying. Layla had a new tumor that is invading her one good kidney. That kidney was functioning at 59%, which meant surgery (and any possible damage to that kidney) is not an option. While there are a few options in this general scenario, Layla was not eligible for any of them. Her kidneys must be functioning at 70% for any clinical studies or more radiation. They were left with 2 options. Both had the same result. The goal wasn't to get rid of the cancer, it was to slow down the growth. Her tumors were growing rapidly and if they did nothing, there’s a good chance she wouldn't have been here for her sister’s 9th birthday on Feb 24th. They chose to do a daily oral chemo. Yep. Every day. For the rest of her little life. There were minimal side effects and there was a good chance that they would get to spend another 2 months with sweet Layla. After 2 months they would re-scan and see if there has been any growth. If there was not, then she stays on the chemo and we check again in another 2 months. Studies have shown that in 50% of patients, the tumor growth stops. Sounds great right? Take some chemo every day and just live with the tumors. They’re not causing her any pain yet, so theoretically, that wouldn’t be so bad. As long as that tumor doesn’t creep any farther into that good kidney, this would have been the optimal outcome for Layla (aside from complete healing!!!). So what happens to the other 50%? Their tumors continue to grow. At the 2 months mark, 50% of patients have larger tumors. God forbid Layla would fall in this category, they could try another type of IV chemo. The big problem with this one is that it will make her very ill. If the oral chemo didn’t work, the chances of the IV chemo working are slim to none. Mid Febuary, the nightly doses of Tylenol for pain turned into daily doses of Morphine. Layla stopped eating and only wanted to be held.   She became increasingly lethargic, fussy, and just plain uncomfortable. Her mom knew something was not right. They made a rush appointment with the doctor and the doctor told them that the tumors had been growing at an alarming rate. Her mom could feel the tumor in her sweet baby’s abdomen; which confirmed her biggest fear. Her parents went home and faced the end was closer than they had hoped for. They received a call from the doctor who spoke about the need for hospice care.  They were also told without any tests or scans that they could only hope for a week or two more with Layla.  Layla’s little body had been attacked by cancer and her fight would soon be over. She would soon be at peace with her heavenly Father and would suffer no more pain. Her parents were understandably devastated, but their faith in God and their strength in each other and in the Lord did not failed. They are facing all of those things that no parent should have to face. Layla was slowly fading, her breathing was slower and she didn't want to be held.  She wanted rest all day. Layla spent most of her days sleeping. 30-45 minutes after she woke up, she was ready to lay down and sleep again. She prefered to be rocked in her dark bedroom for a little while, then laid down in her bed. She got easily overstimulated by the noise of the other children downstairs. She wanted dark, silence, peace and sleep. So they give those things to her. As much as it broke her mom's heart to not be able to hold her all day, she know her little body needs peace and sleep.  They tried to put her in his parents' bed with them but she just screamed. Her mom tried to rock her in my room, but she just cried. She wanted familiarity. Her own bed. Hospice told them that when the time comes that they shouldn’t leave her side. She wouldn’t know where she was and won’t put up a fight about sleeping with them. She’ll only open her eyes for a few minutes at a time. Layla's PICC line (IV that is inserted in her arm and runs to her Vena Cava to administer meds) stopped working so she spent one more last day at the hospital having it repaired. Thankfully, it could be fixed without surgery. It wouldn't have been possible in Layla's condtion and she would have probably passed while in the OR. While there, they did an ultrasound to see what’s going on with the tumors in her little body. They got news that there were new tumors. One inside her liver and another on the right side of her abdomen, where her kidney should be. The existing tumors were still growing. Layla struggled for days. Some days not waking up at all. On March 9, 2010, around 7:15 a.m. Layla danced into heaven. She was forever cured of cancer! She woke her mom that morning by touching her arm (Layla was sleeping between them). Layla’s breathing became less and less frequent just like the doctors told them would happen, and they knew that she would pass within the hour. They told her just how much they loved her and that it was ok to go. They asked if she could see the angels, and she looked at them as if to ask for permission to go play with them. At 7:15, they asked her if she could see Jesus, she took one last look at them, her eyes widened like she was looking at something in the distance, and that was it.
After she passed they bathed her and put a pretty white dress on her, and then the funeral home came and got her.

Layla, you are my hero. You were such a fighter. You will always have a place in my heart. I miss you more than words can say. You changed my life. I love you, baby girl. I can't wait to see you in heaven.

Layla Grace Marsh
11/26/07-3/9/10
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