I don’t even know where to begin. These past couple of weeks have been another crazy rollercoaster ride. On Tuesday night April 25, around 11pm, Logan stopped tracking (following) and was just in a trance like state. I knew for a few days prior that there was something wrong with his shunts but we needed to get through round 2 of chemo. They ended up doing an emergency CT scan and shunt series x-rays later that evening. They also hooked Logan up to an EEG machine to see if he was having seizures. Then around 4am on Wednesday they ended up tapping (draining) his shunts bedside and released about 30cc’s of CSF (Cerebrospinal fluid) and he immediately went back to tracking. This is how they knew he was in shunt failure. It was like a catch 22; the chemo was working but the particle from the tumor were causing the tubes from his shunts to back up and stop draining. Around 7am, they brought Logan in to the OR to remove his shunts. They tested his CSF and sent his shunt tubing out for testing to see if there was an infection. Luckily, to date, neither the shunts nor his CSF are infected! The concern, however, was because Logan had an incision on his belly from the initial shunt placement that became infected and the doctors determined that if we waited any longer to remove the shunts that in a day or two you could have seen the tubing through the infection on his belly….awful!!! (His belly was not healing very well after infectious disease narrowed down what antibiotic to use). So as of last Wednesday, Logan has external shunts and is in the PICU. He needs to remain in the PICU as long as his shunts are externalized. They were initially going to re-internalize his shunts last Thursday, but after Dr. Adamo (Pediatric Neurosurgeon) and Dr. Weintraub (Pediatric Hematologist/Oncologist) spoke, they decided to hold off and move forward with partial tumor resection. It’s best that the shunts are external while they attempt to remove part (if not all) of the tumor.
That brings us to the past few days..I have been an emotional wreck and sick to my stomach since they decided on surgery and went over the risks. Now, don’t get me wrong, this has always been the plan….2 rounds of chemo, surgery to resect and then 3 more rounds of chemo. But this is the most scared that I have been since the day Logan was diagnosed. The chemo has shrunk the tumor significantly but is still pretty large for a baby his size. Congenital Glioblastomas are very aggressive and very vascular.
There are other cases that show that partial removal followed by more chemo has had good results in attacking this type of tumor. Kevin and I have the utmost trust and respect for Logan’s doctors, but again this is all very scary.
Two of the biggest risks are:
1. Logan could bleed out uncontrollably and not make it off the operating table.
2. The tumor is pushing on Logan’s left frontal lobe and they aren’t sure if it’s just pressing on it or if it’s actually invaded that area. Either way, he could come out of surgery not being able to use the right side of this body. Whether it be permanent or temporary, we don’t know. Could last a few weeks or a few months.
The good news is if the latter occurs, he is a baby and his brain is still developing so there is a great chance he will recover. Meaning his brain will grow and compensate for the parts that are damaged. Where if this were an adult, we would basically be screwed! His developmental pediatrician, Dr. Lucas, is very happy with how Logan is already doing and said he is neurologically sound right now, and is confident we would be able to overcome the second outcome.
So, needless to say, I am a hot mess. I am trying to stay positive and they have been telling us worse case scenarios since the day Logan was born and he has overcome and proven them wrong each time. But even the thought of losing my son is killing me. I am bawling as I type these words…please God save my baby!!!
I do, however, find peace in knowing that Logan is here for a reason, and we will fight for him no matter what. He has the best doctors, family, support and prayer warriors we could ever ask for.
I want to give a big thank you to my friend and brother Jason Twombly for always being a text or phone call away to pray with me and for Logan (even at 3am). Thank you, Karen Laing, for inviting me to WOW (Women of Worship) yesterday and introducing me to some amazing people to pray over me, especially Bethany Hoyt. And I am and forever will be grateful for Michelle Brooks…I love you!
With that being said, Kevin and I will be having final conversations with both Dr. Adamo and Dr. Weintraub on Monday to discuss surgery. As of now, surgery is scheduled for Tuesday. I will keep you all posted if anything changes but please send ALL your prayers and positive thoughts to Logan and his family on Tuesday as that
