We received our MRI results this morning, and although this is not the update I had hoped to share with you tonight, it’s not entirely bad either. There is a spot on the side of Caleb’s head that we have been keeping an eye on. At first it was just a small bump that you could hardly see, and in the last month or so it has grown to be very noticeable. Our doctors aren’t entirely sure what it is, but since it is growing it needs to come out. Caleb will be having surgery next week to remove it, but more on that in a minute…
Tuesday was MRI day and Caleb was in the best mood! We had appointments starting at 8am, but he was excited to “go to sleep” (anesthesia) because he said when he wakes up he always has more energy to play. We were so proud of him because even though he couldn’t eat, and he didn’t get put under until almost noon, he was so funny and just had the best time playing in all the playrooms. We are sad that he is used to these tests and procedures, but thankful that he handles them like a superhero.
When he woke up he was super hungry as always! He went through 3 or 4 snacks before we even got home! He’s so funny because he’s super drowsy for the first couple hours after he wakes up and some of the things he says are hilarious. This time in particular he was upset when his cheese in his “pretzels and cheese” pack ran out before he ate all the pretzels. Like he was seriously upset about it ha ha! We promised we’d get him more when we got home.
It had already been a long day because we got there at 8am for bloodwork, and had a 9:30 clinic appointment to go over the bloodwork and clear him for anesthesia. We then had a 10:15 appointment for his MRI, but by the time they do all the prep it was almost noon before he went to sleep. It was about 2:15 before he woke up in recovery, and then we had one last appointment of the day with the surgeon to make sure they didn’t want to try to drain his finger. She thought it was doing what it needed to do on it’s own, especially since his ankle was healing well, so no further procedures on that are needed right now.
So that brings us to today. We had a 9:30am clinic appointment to get the results of the MRI. I wasn’t really worried or thinking too much of that spot. It’s been on my mind but we have been keeping an eye on it so I wasn’t sure what to think. When our doctor entered the exam room he closed the door behind him. In my mind I was like “oh no, he never closes the door.” He started to tell us that after looking at the Ultrasound, X-ray, and MRI of that spot they still aren’t 100% sure what it is. Since it is growing they definitely need to go in and take a look at it and remove it. They will biopsy it so we will know for sure. There are a few different things it could be… it’s possible it’s a benign growth caused by the surgery or from the radiation. Radiation has many side effects and this could definitely be one of them. There is also a chance it is a tumor. It probably isn’t AT/RT (due to it’s location and slow growth over time), however it could be another type of cancerous tumor. Really all it took was hearing the word “surgery” before James and I were super upset. We don’t want Caleb to have to go through any more. He’s been through so much already and we are just ready to be done. But this won’t be as invasive as the brain surgery, thank God! The growth seems to be outside the skull so they won’t be going into his brain again. Here are a few pictures of the MRI scans we were shown today:
The MRI didn’t come with all bad news… the rest of his brain and spine look completely clean, and his spinal fluid came back clean. These are both huge blessings! We will take that as a win, and hope that this growth is benign and after it’s removed we can go home. If the growth is a cancerous tumor we are talking about possibly staying for more radiation treatments. We will see… trying not to get ahead of ourselves until we know for sure what it is. Then we will come up with a treatment plan.
We will be having Caleb’s surgery next Wednesday, July 3rd at the other Children’s Hospital in town, Le Bonheur. It’s very close to our apartment, actually closer to us than St. Jude! We drive by Le Bonheur every day, but we were hoping to never see the inside of it. Our doctor spoke very highly of the surgeon that will be working on Caleb, and said he’s not only one of the best in the area, he’s one of the best in the world. We have heard nothing but good things about Le Bonheur so we are confident that their treatment will be top notch. We will probably have to stay a couple nights while he heals. Le Bonheur is used to working with St. Jude, in fact our appointment with them even showed up on our St. Jude schedule. The biopsy will be sent straight to St. Jude and they will do the pathology report.
On top of the surgery, and because St. Jude is so thorough, Caleb will also have a PET scan on Monday. This will show if there are any cancerous cells in his blood or anywhere else in his body. I am very nervous about hearing the results of this test, probably even more nervous than the surgery on Wednesday. But it is possible to have a tumor without cancer metastasizing, so even if there is another cancerous spot it doesn’t mean it has spread. I guess the point is I could sit here all day long and think about the possibilities of what they will find in both the PET scan and the surgery, but I can’t do that to myself any more today. It’s been a long day and I am so thankful that “Grebbie” was in town because she took Caleb out for a fun day so James and I could just process everything. They went to play putt putt, play games at his favorite arcade, and eat lunch at Chick-fil-a.
Caleb is in no pain and never complains about the spot itself. The only reason we noticed it is because it has grown. We sat the kids down tonight for a family meeting to tell them we may be in Memphis a couple more weeks (because they have been very ready to go home to Florida), and that Caleb has to have a little surgery next week. They both took the news very well. You can see the concern in Tyler’s face about his brother. He is so sweet and so caring.
I have spent all day mad at myself that this was something we didn’t notice sooner. For the first time in a long time I had that heavy feeling inside where I don’t want to do anything and I can’t move. I took a nap when we got home because I just needed to forget about everything for a while. But, as usual time has helped it become easier to digest. The kids need us, and they need us to be at our best so we have to put one foot in front of the other and keep going for them. Grebbie cooked us dinner tonight and we just played and had a good time, and it was nice to see both kids playing together and being silly and laughing. Their laughter really does heal everything.
I went back to see how noticeable the spot was in past months… honestly it didn’t get super noticeable until about April or May, but may have been there since last October. It’s hard to tell because in some angles I think I see it, and at other times I don’t see anything.
Here is the spot I am talking about:
Here it is in past months…
I feel like it made a pretty big jump in growth from April to May after looking back at all of those pictures. Or at least it had grown enough to finally be noticeable. I am trying not to worry but it’s very hard to know something has been growing again. I haven’t had that sick feeling in the pit of my stomach for so long, but I did today, and I hate that feeling.
On another happier note, the tumor bed from the original surgery is healing and filling in quite nicely. Kids brains are amazing, and they way his has healed with no neurological side effects is incredible. I pray that can continue and that we won’t ever need brain surgery again! Here is a reminder of how far we’ve come. It’s amazing to look at these images and see how large the tumor was.
So, we are for sure a little down right now. We had already started packing boxes thinking we’d be out of here as early as next week to move home. I am mostly sad for Caleb and all he has had to endure. I’ll go through anything, but it’s just not fair for him to have to go through all this. He is fearless and amazing and I don’t know what I would do without him. We will update everyone as soon as we know more. We are thankful for everyone’s support and love through this whole ordeal, and looks like we have a little left to go before we can get home, but I know we will get through it. We love you all and thank you for your prayers and words of encouragement.