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Jul 18, 2017 Latest post:
May 21, 2018
I am just finally getting around to writing this caring bridge site. It is now July, so I would like to review the past couple months that have been a very difficult, humbling, and at times extremely happy moments with our youngest son Aric who was diagnosed in May with an Embryonal Tumor with multilayered rosettes, C19MC altered. Being that it has been a couple months since this whole thing started this post may be pretty long to catch up. At the time of this writing we are going into his 3rd Chemotherapy Session. Our son Aric is a very happy, giggly boy who is almost 2 years old. In early May 2017 he woke up one day tilting his head to the left side. We shrugged it off thinking he merely slept wrong and it would go away after a day or two. Well the weekend came and he was still having this head tilt. So to be safe we went to the urgent care to see if it was a ear infection. The doctor checked out his ears and said it's possible that he may be just getting over the ear infection, to keep an eye on it and if it doesn't go away in a couple days to come back. A week goes by and he's still got the head tilt and it got to the point where he was crying, experiencing what looked like vertigo, with random bouts of vomiting. So we decided to take him in which would be the craziest/ worst day of our lives. At first we went to urgent care. They noticed that there was a slight droop in the side of his face and recommended us to the ER. The ER recommended us to the Masonic Children's Hospital in Minneapolis to get an MRI, they explained that they could do the MRI at the ER but that we would still need to go to Children's to get treatment if they found something. After driving to Children's hospital we immediately get prepped for the MRI which Aric had to be sedated for. I remember talking to Jessica and stating this was an awful lot of fuss for a ear infection but I guess it's better to be safe than sorry. After coming out of sedation we were called in for the results... that Aric has a large brain tumor near the brain stem. At this point in time you kinda go into shock and realize that everything has changed. The doctor is speaking but you can barely comprehend what they are saying, you are just simply staring at an image of your child's skull with a large hazy mass where there should be just black. He went on to explain that the mass was so big that it was cutting off the circulation of the CSF (cerebral spinal fluid). This was causing a pressure build up in the brain and that this pressure was causing Aric's symptoms and needed to be released. There would be 3 surgeries over the course of the next week. The 1st would be to place an external shunt and at the same time poke an alternate path for the CSF to route around the tumor so it could flow properly, the 2nd would be to take a biopsy of the tumor, and the 3rd would be to remove as much of the tumor as possible, then from there pieces of the tumor would be sent out to labs across the country for a more thorough diagnosis. The 1st surgery went very well, the pathway was working and the shunt was kept closed mostly and only opened when the pressure in his head would get above a certain level- to drain a bit of fluid. We are in the ICU during this time, which is not built for comfort. Jessica and myself are basically still in shock and disbelief at this point because it had only been the day before that we had gotten the diagnosis. Aric was recovering very well from this surgery, with Mommy basically acting as a pacifier with nursing. The 2nd surgery was scheduled for 2 days after the 1st one. This was an exploratory biopsy which should give a better idea of what the tumor is. The surgery went well, and during the morning recap we overheard that there was a lot of dead cells and there may have been an observed wall of the tumor- meaning that it may not be touching the brain stem after all. They also did not see any cancer cells in the initial CSF lab. Because of this new information we have hope that the tumor is benign, we do not let our minds stray from this hope. I remember constantly repeating to myself "Benign benign benign", anything to keep this hope alive. Aric is recovering very well and over the next couple days we are getting very excited at just how well he is feeling. hes smiling and playing in bed. A few days after the surgery Jessica and I were starting to get worried as the result from the biopsy are not back yet. The nurse comes in and says we are now cleared to move up to the 6th floor which has big comfortable rooms and Aric is stable enough to remove the shunt, and not be monitored so closely. We finally felt some relief, "Wow it must be good news if they are letting us recover outside of the ICU". We move into the 6th floor room which has a beautiful view of Minneapolis. Right when we are getting settled in and comfortable. Two of the oncology doctors come in. The preliminary results are in. They write on the board Medulloblastoma. They explain that this tumor is malignant, but there is a protocol called Head Start 4 that has seen great results in these tumors, so it's treatable. But the process will take months, not weeks to eliminate. Dr. Moertel explains that after the 3rd surgery he will send pieces of the tumor for confirmation to Rochester Mayo, University of Ohio, and Toronto, who are all specialists in Pediatric Brain Tumors. We have hope but are still crushed to find out it's malignant. Finally surgery day is upon us. The day is filled with preparations, such as a CT, no eating or breastfeeding, and tests. The surgery will take between 8- 12 hours. Every time they put him under and take him away is soul crushing . This is the big one. There are so many things that can go wrong and of course the surgeons must tell you every little thing that can go wrong, The likely, the less likely and the rare. Once he is taken away Jessica and I decide to go for a walk, we must have walked 8 miles the first two hours. We get some lunch, coffee, coffee again, and meet with our families for dinner later in the evening. Every 2 hours they call and give us an update. Every time they call it's pretty much the same story- Aric is doing great, the surgery is going well. Finally towards the end of our dinner at Pizza Luce, 8 1/2 hours after starting the surgery, we get the call " Aric did amazing, they are closing now and you will be able to see him soon." The relief from hearing your child made it through surgery, is a great feeling. We rush back to the hospital and spoke with Dr. Guillaume, the surgeon that performed the surgery. "Aric did very well. All of the sensors we put on him to test motor function, hearing, ect, remained silent, meaning there should not be any side effects from the surgery. We took out as much as possible without too much risk and were able to get approximately 85% of the tumor." The next few days were mostly recovering and keeping him comfortable. Finally after now being in the hospital for 2 weeks, we are finally cleared to go home. And we are very happy. At this point Aric has not been walking yet, but the doctors said this is normal being that he has just had surgery and has not been walking much over the past couple weeks. We arrive home and the look on Aric's face is priceless, a smile from ear to ear, that he's finally home. It only takes him a couple days before he's walking normally again, playing with his brothers, and sitting in the yard enjoying the nice weather. After a week of being home we need to go back to the hospital for a checkup and get the final results from the pieces that were sent out. In the meeting with the Oncology team the results are in. It is not a Medulloblastoma, but a much rarer Embryonal Tumor with Multilayered Rosettes, C19MC altered. Which basically means, its a tumor that was formed when he was an embryo, it has layers of these flower looking cells, and the 19th Chromosome is altered. The prognosis is much more difficult, however the lead oncologist stated that there actually could have been many other cases of this, but up until recent years they were not able to classify this because the technology was not there. The treatment plan will not change, we are still looking to get in on the HeadStart 4 Protocol. Which is a treatment that gives 3 large and aggressive sessions of Chemotherapy (using 4 different chemotherapy drugs and supporting drugs with them) then an MRI to verify the cancer is in remission, if its not in remission we will do 2 more of the chemotherapy sessions and/or another surgery then go into a "Stem Cell rescue" phase, where they give ultra high doses of chemo (so high that his body will be unable to recover from) to strip the bone marrow clean, and then use his own stem cells that are collected earlier in the process to inject back into him to "rescue" and recover the bone marrow again. Recovery from the "rescue" process is about a 4 week stay in the hospital where he will be closely monitored. They say when you or your child has a tumor you should make that tumor your own, and learn everything you can about it. We have gone over and over hundreds of webpages for information on (Starting with Medulloblastoma) Aric's tumor. There's a couple things I can recommend with online research. 1) Always look at the date the article was written, Something from 2015 will not necessarily be valid in 2017 as the research is always happening. 2) Never let prognosis get into your head. It will tear you apart and break you down. The prognosis does not pertain to your tumor, or your child's situation. So many factors can change that prognosis. From here on I am going to switch to using the journals, because this is getting awfully long. Thank you all for reading. Tom Ferlaak (Aric's Dad)