Tests concluding, treatment starting...

Tighe has been through an unbelievable amount of testing in the last week. The result is that the doctors feel they have characterized his tumor and have decided on a plan of treatment.

Those of you reading up on Neuroblastoma will know that it is categorized into stages and risk. Tighe has been categorized as Stage 3 and intermediate risk. The main factors that contribute to this categorization are
1. The size of the tumor
2. It is bilateral, meaning it crosses Tighes midsection
3. Location. It has entered Tighes spinal column.
Some good results we got this week are a) No evidence of the tumor having spread to his lungs or bone marrow b) the biological make-up of the tumor is not considered to be aggressive - in particular it does not have NMIC (or MYCN) amplification. c) Tighe's heart is considered strong enough to undergo the prescribed treatment. A different result on a) or b) above would put Tighe into a Stage 4/High Risk categorization.
Low risk Stage 1 and Stage 2 tumors are generally smaller and in a location that makes them more easily removeable by surgery. Although a Stage 1 or Stage 2 diagnosis would have been much better, the doctors are still very hopeful that Tighe can kick this and have a full recovery with little to no long term affects. I think the key is that it doesn't spread to other parts of his body. If it became a Stage 4 case it would mean much more aggressive treatments and a much worse prognosis. Let's not consider that for now...

So, things have been moving fast today. Since I wrote the above a little earlier this evening, the chemotherapy treatment has started. Tighe is now over an hour into it and is doing very well. The drugs are administered through Tighes IV line and tonights treatment will last about 2 hours. He will be receiving four different drugs over a three day period, then he will rest for three weeks. This will be repeated four times (with variations in the amounts of the four drugs).
For this first cycle (three days) Tighe is an inpatient in the hospital. If he tolerates the drugs well then he will be allowed to receive the next three cycles as an outpatient, just attending the hospital during the day and going home at night.

Possibly after the first two cycles they will do an MRI scan to see if the tumor is regressing. Definitely after the four cycles they will do a scan to see what the status is. The ideal result would be that the tumor has pulled back from the spinal column and that a relatively simple surgery can be done to remove the remainder. The doctors have told us that they have seen shrinkage of up to 90% of the tumor with the course of treatment that Tighe is on. That is a lot to hope for, I am just hoping that it retracts enough from the spinal column that the general surgeons can remove it and the neurosurgeons are not needed.

I'm also thankful that the chemotherapy is under way. I feel that every day we wait was another day that the cancer could spread (or metastisize). BTW, I should mention that the reaon the chemotherapy hasn't started until now is that we needed to wait until we got all the results from the various tests (only two days ago was it confirmed to be neuroblastoma after the biopsy was done) so that the correct amount and type of chemotherapy drugs could be determined. I've been very impressed with the speed at which both our pediatrician and the doctors here at Stanford have operated. I truly get the sense that curing Tighe is extremely important to them and they are moving as fast as possible.
The way chemotherapy works is that it attacks fast growing cells (such as cancer cells). So, now that the chemotherapy has started, the chance of it spreading is greatly reduced. There are other good cells in the body that are fast growing and the chemotherapy drugs also affect them. For example, hair is fast growing, hence many people on chemotherapy lose their hair. A much more serious side effect though is the reductions of white blood cells, red blood cells and platelets (all fast growing and all attacked by the chemotherapy drugs). However, the status of these are monitored closely throughout the treatment and there are ways to replenish or help these if needed.

That is where we are now. Tighe has two nurses looking after him tonight. He's sleeping right now and seems quite content.

A very brief update

I have to admit I'm exhausted tonight. I don't really have it in me to write much of an update. I will write a detailed one tomorrow. Tighe is doing well. Generally all the results of the various tests we've been getting back are positive (more details tomorrow). Gigi is staying with him in the hospital this evening.
Mam and Dad shared an airplane with the President of Ireland Mary McAleese today, arriving from Dublin in the early afternoon. It's great to have them here to help. Rachel was a godsend helping out the last couple of days while we waited for the A-Team to arrive. And thanks to Doug and Ann-Marie for bringing dinner to Mam and Dad this evening while Gigi and I were at the hospital.

Less than an hour off the plane, Mam was able to say a quick hello to Tighe before he went in for his MRI. He had lots of smiles for her.

Michael marks his territory - lays claim to his Grandmother from Dublin.

Good news

The bone marrow is clean!!! We are so thrilled that the cancer has not spread to the bone marrow. Mass was said for Tighe in multiple parishes today and so many of you, our family and friends, were praying for him. Our prayers have definately been answered today. The tumor biopsy went very well this morning. The little guy still hasn't awoken from the surgery. He's resting peacefully in his hospital crib. Can't wait for him to wake up so we can tell him the good news.

A very important week ahead for Tighe...

Tighe going under before the bone marrow extraction. He did really well and recovered quickly.


Tighe relaxing in his hospital crib after the bone marrow procedure. They removed the IV from his right arm.

Clara was so happy to see Tighe again after his four days in hospital.

The next few days are filled with important events for Tighe.

Today (Sunday) we are baptizing him with his two brothers. Making sure we are all squared away with the big guy before Tighe goes through his final testing and starts his treatments. The baptism will be later this afternoon at our local church, Holy Spirit, here in Almaden. The church were very accomodating to our late request, so we are thankful to them for that. Many of Gigi's family are coming. Jay and Rachel have kindly offered to put some food together for later this afternoon. It'll be nice to have the local family together before we go back into the hospital in the morning.

A lot has happened since my last update on Friday.

The results of a urine test came back on Friday and showed high levels of catecholomine which makes it almost certain that it is neuroblastoma that Tighe has. The final definitive test will be to take out a piece of the tumor and look at it under a microscope.

The three teams looking after Tighe (the pediatric oncologists, the general surgeons and the neurosurgeons) got together on Friday to decide on a plan for his treatment. I was really hoping that they could do a surgery ASAP and just remove the entire tumor. Unfortunately however, and for good reason I understand, they will not be doing this. Because of the location of the tumor there is some risk of damaging important nerve endings that control Tighes legs, bladder and other functions in his lower body. And because the tumor does respond well to chemotherapy they have decided that the safest treatment is to try to shrink it first before removing it.

Our pediatrician (Tighes baby doctor, not the doctors at the hospital) told us that she has had just one case of neuroblastoma before. In that case, because the location and size of the tumor was not affecting any organs, they actually didn't do any chemotherapy nor did they surgically remove the tumor. They just observed it for some time and they found that it completely regressed on it's own. So, for very young kids like Tighe, their own immune system is actually capable of taking care of this type of tumor without any medical intervention. For this reason, we've been told that the chemotherapy treatment Tighe will get will be very low doses, little enough that they want to ensure that they don't impact Tighes immune system so that it can help also with the effort to reduce the size of the tumor.

The current plan (will be finalized on Wednesday pending the remaining exams that will be done between now and then) is that Tighe will get four low doses of chemotherapy starting later this week. There will be about three weeks in between each dose. So overall it will be about 12 weeks before the chemotherapy is finished. At that point we are hoping that the tumor has pulled back from around the lower spine and it will be a relatively straightforward surgery to remove what is left.

There is one very important test we are awaiting the results on however, and that is the bone marrow exam. If it is found that the tumor has spread to the bone marrow the treatment plan will be much more complicated. It will probably mean a year long treatment of chemotherapy and bone marrow transplants. We are expecting to get the results of the bone marrow exam by Tuesday.

Apart from the above treatment plan, there are some other important tests/procedures being carried out this coming week. We need to be back at the hospital at 7:30am tomorrow (Monday) morning. Tighe will undergo a a two hour surgery to remove part of the tumor. The reasons for removing this are

1. Definitively confirm that it is neuroblastoma

2. Get a sample to help characterize the tumor so that the chemotherapy treatment can be planned effectively.

3. The surgeons can do a visual inspection to ensure there's nothing important that may have been missed by the CT Scan.

On Wednesday Tighe will undergo an MRI as well. All these exams help the doctors/surgeons decide on a precise course of treatment. By Wednesday they should have all the information they need and the treatment plan will be finalized. It is very likely that Tighe will start chemotherapy later this week.

We were very happy to be able to bring Tighe home from the hospital yesterday, even if it was just for two days. His big sister was thrilled to see him.

We are very thankful for all the offers of help, support and prayer we have received from family and friends.

Chris and Lyndy dropped by with a shepherd's pie last night and we had a nice evening with them.

And through all of this, Tighe is just being Tighe. Nothing has changed with him, he's his usual happy self. As Gigi said, he's just too young to know what's going on, too young to be worried.

I'd like to also thank my family back in Dublin for rallying to help us. When they first got word James (brother) and Jane (niece) were ready to jump on a plane and come help out with the other kids while Gigi and I focused on Tighe. Then, in Christina's words, "The A-Team" of Dolores and Eddie (Mam and Dad) stepped in and said they were coming. Before I even talked to them about it they had their plane tickets booked. They arrive on Wednesday and will stay with us through Christmas.

In the meantime, we'd like to say a very big thank you to Ann-Marie, Debbie, Darlene and Monique (neighbors) who helped out on the home front last week, looking after the boys while we were at the hospital. And thanks to Rosanna (Gigi's friend from High School) who arrived last night and will stay through Monday, helping with Michael and Cian while we are at the hospital with Tighe. And of course, special thanks to Marge who is always there for us even during this time when Don also needs her help.

So, one day at a time. Tomorrow Tighe tackles his first surgery...

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.

4 months old

Michael

Tighe

Cian

Michael, Tighe and Cian

It's hard to believe but the boys are now 4 months old. The first 3 months were insane and only managable thanks to all the help that we received from our family and friends. The 4th month has been a lot better. The boys are taking 5-6 bottles per day between 6am and 10pm. They sleep pretty well from 10pm to 3am and then awake at different times over the following 3 hours. Those 3 hours can involve anywhere from 3-9 trips into their room to put pacifiers in their mouths. So, we've made huge progress. Bryan and I usually split the night at around 3-4 am taking shifts at taking care of the boys. We're getting lots of smiles and coo's these days which are really rewarding. We saw the doctor yesterday for the 4 month appointment and here are their stats:

Michael 12 lbs 2 oz (10th percentile), 23 3/4 inches

Tighe 12 lbs 9 oz (15th percentile), 24 inches

Cian 13 lbs 11.5 oz (25th percentile), 24 1/2 inches

The doctor called Cian a little cherub. She advised us to start sitting them at the table with us while we eat to develop their social skills. She was impressed with Tighe's hand control, Michael's head control and expects that Cian will be the first to get his teeth. While examining Tighe the doctor noted something in his lower abdomen area that she wanted to investigate further. We are taking him for an ultrasound today. Hopefully everything is okay with him.