Since we left for California we have been very busy in our fight. Audrey was accepted into the trial for Olaratumab a monoclonal antibody that has been found to work well at slowing cancer progression. The antibody will be paired up with a high dose of Ifosfamide chemo to try and stop progression and hopefully even start killing the cancer. On the 25th of April Audrey got her first dose of Olaratumab and then her second on the 2nd of May. The first cycle is just the antibody to see how she takes it then we start with the chemo in addition to that in cycle 2. We even squeezed a trip into Disneyland in between the doses and had the best day we have had in a very long time. Our experience at Disneyland was way better than our make a wish at the magic kingdom as the wheel chair access and Disable Access Service helped make for a easier day for us. The cast members were also all very accomidating. They even reserved us a special spot to watch the electric parade. After the second does of the antibody because it isnt supposed to be too toxic they let us go home to Arizona for a week while we were waiting for the second cycle to come.
Our time at home was awesome. We got a chance to get caught up on yard work, gardening, bill paying and I even built a new quadcopter that a friend already had all the parts for. It was a relaxing week but it was over before we knew it and we had to pack up and head back to California. Unfortunately Audrey’s health had taken a big turn for the worse. On day 4 of being home she started not wanting to eat and occasionally throwing up. We thought she was just constipated and tried cleaning her out. She wasn’t looking any better so we took her to the ER at Phoenix Children’s and they felt she was stable and might have just caught a stomach bug. I knew that wasn’t the case and called our doctor in California. They decided we needed to get back to see them quickly so we packed up and left early on Thursday May 11th to head straight to the Children’s Hospital of Los Angeles. We made our appointment time and they checked her out. They gave her fluids because she was slightly dehydrated but felt she was not well but stable enough to wait until her already scheduled MRI the next morning to see if the cancer was the culprit. We got our scans done and things went well but she wasn’t feeling very well at all and sleeping pretty much non stop at this point. We headed back to the apartment we have rented to wait for the MRI results. MRI results came in and they told us to get the the ER as quickly as possible and that the Neurosurgeon team would be waiting for us. It turns out all of her current symptoms were being caused by hydrocephalus or a build up of fluid on the brain. They thought that the cancer has possibly grown enough to clog the vents to the spinal cord causing the build up of pressure. They started giving her Dexamethasone a strong steroid to combat the swelling and ease the symptoms and admitted us into the hospital to decided what they were going to do. After a few doses of the steroid she started waking up and looking much better so the team decided to hold off the emergency surgery until Monday when they could have a full team. Through the weekend she struggled with nausea and headaches as the pressure continued to build. On Monday they placed a shunt which is a tube in her brain that goes to a one way pressure valve that connects to a tub that allows the fluid to drain into the open cavity of her abdomen. Everything seemed to go OK but she still didn’t feel all that well and was very weak. Tuesday went OK but she still didn’t seem to feel well but was making progress it seemed. Wednesday came and they took the bandage off and said as soon as she poops we can leave as she hadn’t gone in over a week at this point. As Audrey and I were watching YouTube videos I saw her eyes start to bounce. I asked her if her eyes felt weird and she said “My brain is controlling my eyes and I can’t stop them”. This freaked me out and I hit the emergency button. It had stopped by the time she got in there but started back up again. She called the floor doctor and after she evaluated Audrey she called for a STAT CT. We got Audrey mobile quickly and headed off to CT. I instantly saw on the scan the fluid build up was back. Audrey wanted to go to the playroom while we waited for results so we did. Next thing you know the nurse quickly came in and said we needed to go right away and the neurosurgeon was wanting for us in our room when we got back to poke a needle in her head and drain off some fluid to relieve the pressure. Audrey had started throwing up by then and as soon as they pulled the fluid she felt worse. Next thing I know the doctor and nurse were getting us ready to head to the OR. She needed an antibiotic which took a while and the nurse was running with us down the hall hanging it while we rushed to the OR. They needed to get back in and see what had failed. After about and hour and a half the surgeon came back out and said everything things was OK and he couldn’t tell us exactly why it had failed but they put a lower pressure valve in this time to make it easier to drain. After the Neurosurgeon team and oncology team met they think that the cancer that is lining the brain is causing the pressure to build up in a very different way than normal and is why the first valve caused the problem. After surgery she looked very good and much more awake. The next day was pretty uneventful and then they discharged us so we could go back to the apartment on Friday.
During all of this craziness somewhere along the way Audrey’s liver took a hit from one of the medications and we can’t seem to figure out which one. It caused her liver enzymes to go 10 to 15 times the normal which is pretty bad. This is keeping us from starting chemo and now that we have the brain better under control we still have to wait for the liver to come back down. At this point we need her ALT to be under 105 and it’s now down to 289 so still a good bit to go. All the time the cancer is growing and making it harder to keep fighting this already tremendously difficult fight. She is now much weaker than she was before the brain build up but getting slightly stronger everyday. We go back in for testing tomorrow for the liver in hopes to get started on chemo as quickly as possible.