We had another busy day full of appointments, but we are happy to report Caleb is still NED! No evidence of disease!! His brain and spine MRI are clean!
We started our day with a quick E Clinic appointment (that’s the brain tumor clinic at St. Jude). We thought we might get his MRI results right away, but instead they wanted to do a quick evaluation and get him to Procedures for his scheduled LP (Lumbar Puncture). This is standard protocol before a procedure, but we were so nervous knowing we had to wait until our 12:30 appointment with Caleb’s doctor before we got any real results. So we headed to Procedures and got Caleb comfortable. He’s so grown up now. When the anesthesiologist came in and it was time for him to “go to sleep” he was so grown up. He saw the white liquid which he knows is his sleepy medicine (Propofol), he turned off his iPad, handed it to me, and layed his head back to go to sleep. The whole room was shocked and impressed by how grown up he is for a 4 year old!
As usual, he was super hungry after waking up in recovery. We went straight to the cafe for pizza. While we were getting his pizza he also picked out an orange, a banana, a cheese stick, cereal etc. The kid was hungry!!!
All through lunch I was getting more and more nervous about our MRI results. My stomach was in knots. James and I hardly talked the whole time. I know both of our minds were racing. You try not to think about “what if” but you know that the unthinkable has happened and does happen, especially with these aggressive cancers. It’s hard to not think about how your life could change (again) in the next 20 minutes.
Finally it was time for our Clinic appointment with Dr. Santhosh. He came in and said all scans were clean and everything looked really good. Whew! HUGE sigh of relief. We asked if we could see the scans (we are always curious) but this time Caleb was also very curious. He usually just sits on the chair with his iPad when we talk to the doctor but today he said he wanted to see his brain ha ha! So Dr. Santhosh showed him the scans and where his eyes, nose, etc were and also where his “boo boo spot” was. It’s crazy to see how much the tumor site has shrunk in a year. There is no doubt the brain is amazing, especially kids brains! There is a little tissue that is highlighted around the tumor site, which has been the case with every scan as the scar tissue heals. However he said none of that tissue looked abnormal or anything like a tumor. In the picture below the left side is the original tumor (before resection) and the scan on the right side is how it looks today.
We also looked at Caleb’s spine (since AT/RT is known to grow in the spine as well). Everything looks clean. A few months back the issue of some compressed disks came up. It looked as though 3 or 4 of the disks in Caleb’s back were sort of bowing in. We were told that might get better or might get worse, but it’s an effect of the radiation. Today I am happy to report that everything in his spine looked aligned and normal. It doesn’t appear that this is an issue at this time!
After getting this awesome news we rushed off to his Audiology appointment. Our heads were spinning as we were trying to text everyone and post our good news to Facebook! Skye, the wonderful Audiologist at St. Jude, examined Caleb’s hearing aids and made some adjustments to them as well. His hearing, for the first time since January, is stable. This means there was no significant drop in any frequency range. This is such good news! And even though hearing loss from the chemo Cisplatin can occur for up to 2 years post treatment, it appears as though things are stable for now. There was a small drop in the high frequency range, so she made a minor adjustment to his hearing aids so he can pick up on the “s” and “sh” sounds that sometimes get lost when kids can’t hear at that range. We are always so impressed with St. Jude’s attention to detail and the Audiology department is no exception.
This chart shows how his hearing drops off drastically in the high frequency ranges. The chart on the left is from today, and the chart on the right side of the picture is from his hearing test in June. You can see they are almost the same, so no big change in hearing. You can see how he hears well into the 2000Hz range, then it starts to drop off and is very low in the 6000Hz range. I also took a picture of the chart in the Audiology room that explains what you can hear at each frequency.
Our final appointment of the day was with Physical Therapy. Caleb had some leg pain starting when we were in the hospital a couple weeks ago, and he’s been limping a little ever since. The pain seems to have subsided, but he’s still kind of favoring one leg when he walks. We aren’t sure if it was related to the fever he had. Both our doctors at home and our doctor at St. Jude said that low counts and fever could contribute to both muscle cramping and inflammation. We have all agreed to keep an eye on it since it seems to be getting better. We may do some physical therapy in the future, but it doesn’t seem to be a serious issue that needs action at this time… and it certainly isn’t stopping Caleb from being an active and energetic 4 year old!
To say we are relieved and grateful for our good news today is an understatement. There are no words to describe making it past another set of scans. We will put ourselves through this emotional roller coaster all over again in 12 weeks, and 12 weeks after that… and 12 weeks after that for a long time. His next scan will happen in January and will be Caleb’s official “end of treatment” MRI. At that time he will finally be done with chemo! But, one day at a time. Today is definitely a victory! Thank you to all of you that continue to pray for us and support us! It felt great to know that we have support no matter what happens, but it was awesome to be able to deliver good news to everyone today! One last day of appointments tomorrow and then we’ll be back in Tampa on Friday!