Tighe

Before I go into any details, I just want to assure you that Tighe is doing great, you'd never know there was anything wrong with him at all. And although he has a challenging few weeks ahead of him, we've been assured that there's every chance he will get through this with a full recovery.
On Monday this week at his regular 4 month check-up, his Pediatrician (Dr. Eileen Gallagher) noticed that there seemed to be something unusual is his very lower abdomen, almost deep into his pelvic area. She arranged for us to have an ultrasound the following day (Tue). We had the ultrasound late in the afternoon and they confirmed that there appeared to be an unusual growth in his lower abdomen/pelvis. Dr. Gallagher immediately arranged for us to go to Lucille Packard Children's Hospital (at Stanford, where they were born).
They took some blood and urine samples on Tuesday evening and said we would need to stay for a CT Scan. A CT scan can show a lot more detail than an Ultrasound. In the meantime we had multiple visits from the Attending Oncologist (Head cancer doctor, Dr. Maureen O'Brien) and her team, and they've been explaining lot's of things to us and what the possibilities are. Yesterday they were very hopeful that what Tighe had was called Sacrococcygeal Teratoma. This is a benign (non cancerous) growth that is quite easily treatable mostly by just removing it. The other possibility they said was that it could be Neuroblastoma, this is more serious as it is almost always malignant (meaning that it can spread and affect other parts of the body). Both are very rare and it is not known what causes either one of them.
We had the CT scan this afternoon and Dr. O'Brien and her team came in to see us immediately afterward. They wheeled in a computer monitor to show us the pictures from the CT scan. Although it's not definitive yet, they said it now looks like it is more likely to be Neuroblastoma. The reason being that they can see calcium in the tumor and because of the shape of the tumor. Also, the Teratoma normally has fat in it, and they don't see fat in the CT scan pictures, hence it's more likely to be Neuroblastoma.
The tumor is about the size of a tennis ball, which is huge for a child of this size but because of it's location it's very hard to notice it. Actually, a lot of the doctors here at Stanford have been very complimentary of our pediatrician because they said it could very easily have been missed, and the longer it goes unnoticed the more chance it has to grow and spread. So for that part we are thankful.
Apart from the pelvic area, the tumor is also growing into Tighes lower spine. This is not as bad as it sounds as it is not yet close to his spinal cord. The spinal cord actually ends in your mid to lower back. There are nerves that come from the base of the spinal cord through the lower spinal bones and down to the legs and other areas, so there are complications with having the tumor there, but it's not nearly as serious as it being against the spinal cord itself.
So, that is where we are now. The next steps are as follows.
Tomorrow (Friday) they will do a bone marrow test. The two areas they are most concerned about it having spread to are the lungs and bone marrow. From the CT scan they were able to tell that nothing has spread to the lungs. Hopefully it has also not spread to the bone marrow.
After that, the next test that will be done is an MRI. This is an even more detailed scan. This is needed to show the surgeons exactly where the tumor is so that they can plan the surgery. The oncologists are working with the surgeons to develop a treatment plan. The plan will most likely involve them going in and removing the tumor, though there is a chance that they would use drugs to shrink the tumor and then remove it if needed. Currently the MRI is planned for early to middle of next week, and the surgery will be late next week or early the following week.
Because of the location of the tumor it will be two different surgical teams that remove the tumor. One of the teams will be the neurosurgeons, they will focus on the area at the base of the spine. The surgery is expected to be somewhere between 6-10 hours long. Follow up treatment may or may not involve chemotherapy, depending on what they learn between now and when they do the surgery.
All of the above is what we know now. Things may change. And they are still in the early stages of identifying exactly what the tumor is. If it turns out not to be Neuroblastoma then the treatment plan will probably also change.
There are only around 600 cases of Neuroblastoma per year in the US (population more than 300,000,000). Although it is rare, it is very treatable. Also, it seems like the younger the child the better the response to treatment, so we are very lucky this was caught so early… I should stress again though that although it seems likely that this is what it is, it is not yet certain.
So, please keep Tighe in your prayers. We are ready to do all we need to do to get him through this. The most unbelievable part is that he seems absolutely fine, not a bother on him. What was expected to be just a regular well baby check-up has turned into a rollercoaster week. Tighe has been very brave throughout it all. He's his usual calm self. He has won a lot of fans with the nurses and doctors in here. Last night's nurse, Kathy, told me that when they come on shift the first thing they go though is an update on all the patients from the head nurse and one or two of the doctors. She said they were all told that they would fall in love with Tighe, but that they were going to be watched to make sure they didn't make up excuses to go to see him all the time, that they needed to focus on all the patients. Tighe is sleeping contentedly in his bed as I finish writing this. After the bone marrow test tomorrow we will hopefully take him home for the weekend.