Well usually our 21 days between treatments are pretty quiet. But since our 3rd round of chemo things have been anything but quiet. After getting the run around and not really any answers we felt really uneasy after chemo #3. The Dr’s kept telling us they would have to run more and more tests but we were never given a true plan of where we are heading...a specific plan so to speak. I started doing research and reaching out to other moms with kids with Neuroblastoma. What I found made me more unsettled than I already was. I talked to Matt about how I felt like we may need to get a second opinion. Shortly after Liam was diagnosed a fellow cancer mom suggested getting a second opinion but we were still so stuck in the fog of diagnosis and were trusting that Primary Children’s had the experience we didn’t to help get our little guy better we proceeded forward. After being let down several times and Liam not getting optimal care we decided it was time for a second opinion. Originally my thought was to wait until we finished chemo #4 and had new scans then we would look for another opinion but the thought just kept coming that we needed to seek a 2nd opinion. So Sunday night I submitted a request for a consultation to Memorial Sloan Kettering hospital in New York. They are a cancer hospital and actually have a neuroblastoma team. In the research I have found they see about 300 kids a year with neuroblastoma where as Primary’s see 3 roughly. Along with several other things we decided to move forward immediately hoping we would hear back sooner than later. I
I never imagined that Monday morning just shortly after 8am I would receive a call from Maria, the neuroblastoma coordinator). I was kinda in shock as she ran through a list of questions about Liam and his medical history. She let me know that she would pass the information on to one of the five neuroblastoma oncologists and that they would call me back….personally. You guys I didn’t even know how to respond. Maria also asked that I let Primary’s know we were seeking an 2nd opinion so they wouldn’t be surprised. After I got off the phone with her I called the nurse coordinator(Rosann) at Primaries and let her know that MSK would be reaching out for Liam’s medical record along with all of his scans. She was nice on the phone and told me she’d let Dr. Verma know to expect a call. Then I called Matt. I was a little freaked out that this ball had started rolling so quickly. Matt called me down by saying, “Isn’t this what we were looking for?” And he was exactly right. I reached out to the cancer mom that had originally suggested a 2nd opinion and asked if she had anyone with experience directly with MSK. She gave me a couple suggestions and was reassuring that I was doing the best thing by being Liam’s advocate. I just didn’t want anyone to be offended but have lost some faith in his current medical providers. I was able to contact Jen, a neuroblastoma mom, she was a God sent and so helpful.
Tuesday morning I received a call from Dr Basu at MSK. She apologized that she hadn’t called the afternoon before. I guess there was a transcription error with my phone number. She let me know that she had reached out to our attending at Primary’s but hadn’t heard back. She asked a few clarification questions about Liam but her first question was the one that really hit me. She asked, “When surgery was discussed why had they decided against it?” I told her that from the beginning we had been told that surgery was off the table. Initially they wanted to make sure they got any cancer “spores” that weren’t picked up on scans and secondly that with the position of the tumor so large and in between the bladder and rectum as well as rested against his spine they wouldn't suggest surgery. Since then we have asked about what treatment looked like and they always said surgery wasn’t necessary that chemo would take care of it. She said she was surprised because under 18 months of age, with no metastasis, and Liam’s other biopsy results. Surgery for the primary tumor is the first line of treatment and only if margins are still positive for cancer would they do chemo. I was in shock..did I hear that right?! Our little guy may not have even needed the 3 rounds of chemo he received? I asked and she said it was hard to tell at this point but that now that the tumor was smaller it would be much easier to remove. Honestly there was no reason to focus on this. It wouldn’t do Liam any good the only path now was to look forward. She said she would call the nurse coordinator personally and request his scans so we could get things going before he was schedule for any more(possibly unnecessary) chem. About 90 minutes later I received a call from Dr. Basu again letting me know that the scans were on their way to them and would arrive Thursday morning. I wasn’t sure if I should laugh or cry. I felt hope for the first time on this journey! I was gitty. We have been searching for answers for someone who truly seems to care about our child. Our current attending has never even put her hands on Liam to assess him! And I felt so validated for questioning and wondering if we were doing what was best. She said they had seen the radiology report with the 61% shrinkage and how phenomenal that was. She said...word for word the safest course would be to take the cancer out before it did something crazy.
I then called Jen (neuroblastoma mom friend) to tell her the great news. She is so awesome and said she would send me all the contacts I would need to get flights, line up a place to stay, and things to do while we’re there. It’s so nice to have someone that truly understands the fight we’re in. She reassured me that everything was going to be ok and that we would figure it all out. I'm so grateful for everyone's encouraging and loving words and support. They keep us going
This hospital has their crap together. They are so organized and their communication is amazing thus far. Two things we have struggled with at Primary’s. The way MSK operates all 5 neuroblastoma oncologists meet weekly along with the neuroblastoma surgical team to discuss the patients. They collectively have to agree on the treatment of the child and then they proceed forward. They meet officially on Tuesday so we should have an answer officially by Tuesday if not sooner. Dr Basu mentioned surgery before the end of the month! I am overcome with the Lord’s love and direction for each of his children. He is aware of Liam and his struggles. We will figure this out. Right now going to New York feels so right. We are trying to take the time and space to think through all of this. Just like chemo surgery has its pros and cons. Please continue to keep us in your prayers. We may need them now more than ever as we make these huge decisions for Liam and our family. 
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