Friday Update

Today was another good day. Jude continues to improve. He is still very thirsty, and begging for water. We hope that tomorrow he can begin having water. He has been very crafty in his requests. My mom was heading out to use the restroom when Jude said “While you’re gone, can you get some water and bring it to me?” How we hope that he can begin getting his thirst quenched tomorrow!

Jude’s mental faculties are about as good as normal. His speech is virtually normal. Besides still having IVs, he has some minor balance issues that are quickly improving, and is really doing fabulous.

He got a few visitors outside of family today that really lifted his spirits. Our neighbors behind us (just the parents) came right about lunch time. About an hour later, his two best friends, both 6 and both across the street (two doors down from each other) also came. He really was trying hard to be his normal self for the other kids. Last of all, Jessica’s aunt and three cousins (in 8th, 10th, and 12th grade) came in to see us. We like visitors!

As I was about to sit down to type this up, the oncologist stopped in. We still weren’t expecting results from pathology, but she had them. The news wasn’t the best we could expect, but it was still pretty good. On one hand, they determined that Jude’s tumor was a Type 2 Ependymoma (I have only skimmed that link, haven’t read it yet), which is a cancer (malignant). However, at this time they do not recommend further treatment, largely because of the location of the tumor. Had it been in the lower back part, they would recommend radiation in order to ensure that it doesn’t enter and damage the brain stem. Given where it is, if it begins to come back, it can be caught and treated before it gets to a part of the brain that could be a concern. If that happens, he will have another surgery followed by radiation treatment. She said the type of radiation treatment they’d recommend isn’t available in Minnesota though. The closest clinic she could name that has it is in Indiana. We pray it doesn’t come to that, and hope that if it does there will be a clinic closer to home, perhaps at Mayo (it’s in the works). As it stands, he’ll need an MRI every 4 months for the next 3 years, then they will be every 6 months, and at some point become annual. He will need a spinal tap in a couple weeks just to make sure that it hasn’t spread to his spinal chord. The MRI leads them to believe it hasn’t, but this is just to be sure.

The results are “preliminary final”. The pathologist is calling it Type 2 (the other option is Type 3, which would require radiation now rather than just observation), but is sending it to the “guru” at Johns Hopkins for a second opinion. That doctor is the one who defined the difference between the two.

From what we heard tonight, I am optimistic, Jessica is not so much. She is afraid that the doctor at Johns Hopkins will determine it is Type 3. If that is the case, a third determination will be made, possibly by the same doctor that did the initial, but not necessarily.

Interestingly, while I was typing above, Jude began reading a book to me from the bed a few feet away. He asked me “Do sharks eat cake?” I said I had never seen such a thing. He said “No, they eat fish”. That was straight out of a book he has. He asked of several animals. People are amazed that a 3.5 year old can read, but this is a 3.5 year old that had brain surgery two days ago!!

Today’s prayer request is that the doctor at Johns Hopkins would concur with the findings of the pathologist here, and that Jude will need no further treatment. It is always possible that there was a microscopic amount of tumor that was left behind and can come back, we pray that it’s all gone.

Of course we continue to praise the Lord that things have gone so well over the last few days.