Liam's Fight with Cancer-First ER Visit & Finally Some Answers

Answers...finally some answers! The day we have finally been waiting for. Tuesday was more exciting than we had even originally planned. At 2:30 am Liam woke up with a fever of 101.1 and although if it had been any of my other kids I would have just put them back to bed or if they acted uncomfortable give them some Tylenol and back to bed. With cancer and chemo that changes the standards and any temperature of more than 100.4 lasting more than 2 hours or anything over 101 merits a phone call to the oncologist. I called the oncologist and she told me I needed to bring him in but I could take him to McKay and she would call ahead and let them know what she needed them to do. Matt was out of town in Atlanta so I called our sweet friend Amy that has been so helpful, supportive, and present through this entire process. She answered right away and came right over. I loaded Liam up and off to McKay we went. We arrived about 3 am and got checked right in and taken to a room. They drew labs(CBC, viral panel) and cultures, took an xray, gave Liam a bolus, a dose of prophylactic Rocephin(antibiotic), and attempted to get a urine sample with a bag. Although we were there for several hours things seemed to move pretty well. In the end they found absolutely nothing! And although in some ways I was relieved I was still concerned about what might be going on with him but honestly he is 14 months old it could be teething for all I knew. About 5:30 am they sent us home and just after 6 we all got settled back in for bed. Liam continued to have a fever throughout the day. Thankfully he was eating, peeing, pooping, and acting for the most part pretty normal for him. Since all of his labs had been clear I was now able to give him Tylenol. It took care of it very well.

I was still anxious to hear from Sloan Kettering after the afternoon tumor board meeting where they would be discussing Liam. About 2:45pm I received a call from the surgeon Dr, Gerstle and a few other nurse practitioners wanting to let me know how the meeting had gone. He said they had unanimously felt like it was time for Liam’s tumor to be removed. He said they were very impressed with how it had shrunk and now would be safer to remove. He then went on to explain everything about Liam’s tumor in full detail. He explained where it was positioned, the challenges it would present with surgery but that they felt confident they could take it out safely. Dr. Gerstle is the chef of pediatric surgical services and has come very highly recommended. He only does neuroblastoma tumor resections and as you can imagine is very experienced and skilled. I was overwhelmed with all of the information but luckily had taken notes. Liam’s tumor is resting in his lower abdomen like a uterus does in a woman's body. It rests on top of some significant arteries, veins, and nerves. During the surgery a neurologist would be present and would be monitoring the nerves using intraoperative nerve monitoring. That way they can make sure not to cause any avoidable damage. This may mean they might not be able to get the entire tumor if it is wrapped around those nerves. Liam will need to do bowel prep as another precaution in case anything gets nicked it can easily be fixed with an empty bowel. Dr. Gerstle had just given me more information about Liam and his neuroblastoma then we had received in months. I was both grateful and terrified. After answering a few of my questions he closed the conversation by telling me that after the surgery they weren’t planning on any other chemo! This is what we were really hoping for and was such an amazing thing to hear. He said to call his office with any more questions but otherwise he would plan to see us Monday morning in New York for our consultation and surgery would be Wed Feb 26th.
Now the work really began we had to book flights, a place to stay, get arrangements for the girls made, update family, figure out when to leave, and of course pack. I immediately updated Matt then called my new found friend Jen, she is a God sent. She has been so wonderful! She helps answer all my questions, sends me multiple resources, but most importantly she calms my mama heart and encourages me to trust myself and the decisions and feelings we have made and had about Liam’s treatment. She is so genuine and awesome. Since she has been through it she just gets the thoughts and feelings I am having.

Later Tuesday, thanks to Amy, Liam and I received blessings. They were just what I needed. In Liam’s blessing he was told that through faith he would be healed and his fever would go away. And sure enough his temperature never went back up after his Tylenol wore off. I went to bed that night with so many emotions. I was definitely more than ready for Matt to come home.

Wednesday Liam was back to himself minus being a little fussy and clingy. Matt made it home and we were able to set some plans and I started making some phone calls. We got our flights booked and decided to get Liam his own seat so that we had some more space and then others wouldn’t be sitting so close...I'm still terrified of him getting sick. I was on the phone most of the day. I called Rosann at Primaries to let her know we would be going to New York for surgery therefore cancelling chemo for the weekend. She seemed surprised that we had a consultation as well as a surgical date. It was a phone call I was nervous about how it would go given the bumpy road we have had with them. I got off the phone feeling good about where things were left and that we should be able to work together, if we choose, to do Liam’s follow up and scans in the future. Later in the day I got a phone call I never thought I would get. It was Dr. Verma from Primaries she wanted to discuss our plans with Liam moving forward. She was very concerned and stated that we were putting Liam’s life at unnecessary risk by doing surgery. She seemed very frustrated that we had gone looking for a 2nd opinion but what were we supposed to do. We were 2.5 months into this terrible path they call cancer and still had no concrete answers, a plan with a timeline, and the communication was terrible. She continued to explain that chemo would more than take care of the cancer and that they were hopeful that he would only need 4 rounds but wouldn’t know until they did new scans and received more test results back. She stated that surgery was very complex and unsafe at this point. That we didn’t need to endanger his life. She offered to let us talk to Primaries Neuroblastoma specialist but she reassured me he would only agree with her. She suggested getting a 3rd opinion from Seattle Children’s and once we saw that they would agree with Primaries we should then proceed. After I got off the phone I totally broke down. I had so many questions and for a few moments was questioning if what we were doing was right. No parent wants to put their child’s life at risk but we felt so strongly that we were doing the right thing for Liam. I immediately felt like I should call Jen and just like always she answered and totally called me down. She pointed out several very logical and valid points and thru that I was able to get my head back to the peace I have felt with Sloan Kettering all along. I know surgery won't be fun or easy. It's going to be scary, painful, emotional but chemo is all those things too. So the only thing we can do is go forward with faith. Following our hearts.

Thursday morning I was able to talk to Dr. Basu(his oncologist at Sloan Kettering). I explained to her what had happened the day before and asked her to explain in more detail how tumor board meeting had gone. She said the decision was unanimous. Both surgeons felt confident in removing his tumor. They all felt like his tumor had shrunk to a safe size after 2 rounds to remove it. She said that if they had felt the tumor was unsafe to remove they would have suggested just watching him and waiting to see if the tumor would continue to shrink on its own. She said he had definitely received all the chemo he needed. We talked about a few other details and discussed when we would meet in person. We talked about her 2 “kids” one a child the other a dog. I mean so far the bedside manner of these doctors is unmatched and something we have been impressed with from the beginning. They take the time to get to know us and Liam, they answer the questions and are straight forward. In all fairness I did look into Seattle Children’s. They don’t specialize in Neuroblastoma but in Leukemia. If there was ever going to be a place we would need another opinion it would be at The Philadelphia Children’s hospital.

At this point everything is in place. My parents have graciously put their lives on hold, especially my sweet mom, to come and stay with our girls for the extended period of time we will be gone. The expected time frame is just over 2 weeks. It all depends on how Liam tolerates everything. We are going to be staying at the Ronald Mcdonald house just 5 blocks from the hospital. There is a group called the Candlelighters that allow us to borrow a stroller so that's one less thing we have to pack. People have been so helpful. And although our cancer journey will never technically be over. There will always be scans and tests to make sure it hasn’t returned. I'm hoping this will help to put the worst of this trial behind us.

At this time we will be having a fast for Liam. This coming Sunday the 23rd before surgery. We would appreciate your continued love, support, and prayers. For not only our family but for the doctors and other medical staff whom we will be trusting to take the best care of our sweet little Liam. We will also be praying for continued health for all of us but especially Liam as we continue.