Today was surgery day to get this “mystery bump” removed. I was a mess last night, but this morning I was actually pretty calm. Caleb is still too young to really get nervous about things, so as long as we act like things are ok, then he’s ok. So we just find a way to be ok in front of him. Before we walked into Le Bonheur I told him to strike his Superhero pose ha ha!
So we checked into Le Bonheur Children’s Hospital around 9am. Everyone was very friendly and great with Caleb. Right when they took us back to the pre-op room Caleb got to pick out a toy. He picked out a “spy kit” so we definitely had fun playing with that while waiting for the doctors. The Nurse Practitioner, Anesthesiologist and Neuro Surgeon all came to talk to us. We are very grateful to have Dr. Boop as his Neurosurgeon. We had heard nothing but good things about him and he came highly recommended by Caleb’s Neuro Oncologist at St. Jude. He came and talked to us about the plan and we told him our concerns. He has a lot of experience with these things and came up with the least invasive surgery plan possible. He was concerned with trying to keep the incision behind Caleb’s hair line as well. We liked his plan but also told him to do whatever he needs to do to make sure this thing is gone!
When it came time for Caleb to go to the Operating Room only one of us could go all the way in with him. Caleb chose me today, so I had to wear the silly clothes and hairnet ha ha! Lucky me! Funny story… the nurse came and set all the clothes down on the bed and said whoever is going back with Caleb had to put them on. So I started to put everything on and when I was ALL finished putting the big white jump suit thing on she informed me that I put it on backwards and the zipper was supposed to go in the front HA HA!!! But she stood next to me the WHOLE time and didn’t say anything until I was completely finished. I think this is how she gets her laugh each day, but I just left it on backwards anyways HA HA!
Watching him go under anesthesia is never easy but I am pretty used to it. I stayed strong until he fell asleep, and then I cried of course. The nice nurse that walked me out gave me a pep talk as she walked me back to the waiting room, and assured me she would take care of him as if he was her own. We were prepared for maybe an hour to an hour and a half for surgery, so we decided to go downstairs and grab lunch. They told us they would call us with updates. The first phone call was to let us know when they started the surgery. Right when we finished eating the phone rang again. They let us know they were finished and we could go to the consult room to speak with the surgeon. We looked at the time between phone calls and it was only 20 minutes! James and I were super nervous, but turns out it was just a straight forward surgery and he was able to remove the spot pretty quickly.
These were his words to us, to the best of my ability to remember things in moments like this… He said there was some tissue growth connected to the bone so he removed the bone in that area to be sure they got it all. That area of the skull that he removed ended up being about the size of a nickel and he covered it with another small round plate. He said when looking at the growth from the front the bone looked different than it normally should, however when looking at the back side of the piece of skull that he removed the bone looked strong and normal. This leads him to believe that it did not spread anywhere into the brain and they kept the dura (layer between his skull and his brain) in tact. This meant they did not expose his brain to any risk of cells spreading back into his brain. He was also pretty straight forward about what he saw. He said there was very little tissue to begin with, but what was there had some cellular activity. When looking at those cells under a microscope (just a quick preliminary look before they send the sample to pathology) he said they did favor a tumor type such as AT/RT. He did not for sure say this growth was an AT/RT tumor, only that it was possible that it was. We of course thanked him very much and he let us know that he was going to call our Neuro Oncologist at St. Jude to give him all the details right away.
We spent the next half hour calling family and going over in our minds everything the surgeon had said. Rhabdoid tumor cells have a very specific shape, so I would tend to think he saw something like this under the microscope but we aren’t 100% sure yet. AT/RT stands for Atypical Teratoid Rhabdoid Tumor so that falls into this category. However, we strongly believe if that is what this growth is that it was likely from a cell that spread from the first surgery, not necessarily a whole new tumor that Caleb’s body produced. But this is all just speculation on our part. We are told that these things happen quite frequently in surgery. Cells at the microscopic level can not be seen and can spread very easily especially with long surgeries when areas are exposed for a great period of time. But again, these are just preliminary guesses. We will not know for sure until we receive the full pathology report from St. Jude, which will be sometime next week. And even then, we may never know why the growth started in the exact spot that it did.
As far as treatment goes, we are not sure what will happen from here. There are a couple options on the table, such as further targeted radiation, but we want to get the full info before we worry about where we are going next. We are anxious to hear the full pathology report as well as what gets discussed in St. Jude’s Tumor Board next Wednesday. Tumor Board is a group of doctors that sit together and review each case of their patients to come up with a plan. Many heads are better than one, and many eyes on scans are better as well. I like that we have not only 1 opinion from our doctor, but a collective opinion from his colleagues, which are some of the top rated Oncologists in the world. We are very trusting of their opinion and will go with whatever the best recommendation is for Caleb going forward.
But back to post surgery… about 45 minutes after we spoke with the surgeon we got to go back to recovery to see Caleb. He was just waking up, and looking at us, and looked very sleepy (as to be expected). But when he finally did speak his first words were “I’m Hungry!” The nurse laughed and we decided to start slow with a slushy. So he slowly ate a coke flavored slushy and I know it must have tasted so good. The surgeon had said if the surgery went smooth, and he was eating and drinking after, we could go home right away and not even spend the night in the hospital. We couldn’t believe it! A nurse came to evaluate Caleb and take his vitals. All looked good so they told us they were going to discharge us. We were good with this because we only live 5 minutes from Le Bonheur. They told us to give Tylenol as needed for pain and come back if there is any bleeding or we have any other concerns.
The area looks pretty bruised and tender but honestly Caleb had a great afternoon. We rested for a bit, but then Caleb was up running around and playing like nothing had happened. Tyler was a bit scared of the incision but he was very gentle with Caleb when he got home from summer camp, and shared his toys very nicely with him. We even played a family game of Zingo.
Another good thing… Grandma came in town tonight! Tyler and I picked her up from the airport and the boys were both so excited to see her. She came to help with Tyler since Caleb will not be at 100% speed for a few days. We need to make sure he gets plenty of rest, but it will be fun to celebrate the 4th tomorrow now that we aren’t in the hospital. I am sure we will have a fun weekend together!
We sit here grateful tonight that once again we had a successful surgery. We are thankful that each growth or tumor that has been found has been operable. We are also scared about what the future holds. We don’t ever want to find any more growths or tumors ever again! We are also once again in limbo not knowing exactly when we are going home to Florida. In all reality it could be next week if we decide on no more radiation or chemo at this time. It could also be a month or 2 from now if we decide to go back to radiation. We just don’t know until we have some answers from our Oncologist next week. But, one step at a time… tonight is another small win. Whatever the growth was is gone. Caleb is a strong and happy superhero who remains unfazed by most of this. I am so thankful for his resilience and happy attitude. I don’t think we could have a better kid. We are so grateful for him. He is sleeping soundly in his bed now and I’ll be monitoring him closely through the night. We thank everyone for their prayers today, and for reaching out to us today. We’ll update everyone with news as soon as we know something.
So very happy to hear the outcome of the surgery went well for you. Times are so hard for your family I know but believe me we are all together praying for this little hero. Thank you for the update I feel God is with us.