Thursday, October 22, 2009

Back to Seattle Children's Soon

Baby Tito is scheduled with a Cranial and Facial Reconstruction physician at Seattle Children's on Monday, November 2, 2009, at 11:30am. This is several weeks sooner than we anticipated. The timing is good for driving over the mountain pass. We have no idea what kind of news we will get at this appointment as far as surgery goes.

Sunday, October 18, 2009

Another call from the neuro-oncologist

On Friday, October 16th, baby Tito's neuro-oncologist called. This doctor has shown Tito's case to the Cranial and Facial Reconstruction unit at Seattle Children's. We will be heading back over to Seattle to have the baby looked at again but not for another 6-8 weeks. The cranial physician sees no urgent need to come sooner. We are anticipating what this doctor might want to do to correct the baby's protruding left eye.

In the meantime, we are enjoying moments free of worry as we watch little Tito learn to blow bubbles, chew his tongue, try to sit up, and wave hi and bye-bye.

Thursday, October 8, 2009

Then the doctor called

Coming home yesterday, I had a sense of anticipation, anxiety, and dread. The last appointment left us with the impression that baby Tito would be having surgery in the next few months. We waited for the decision of the tumor board.

So, the doctor called. He said the best thing would be to wait for six months and then to do another MRI. We will still see an ophthalmologist to monitor baby Tito's vision.

Does that mean there was or is nothing to be concerned about?

Unfortunately, no. The doctor is reluctant to operate on a baby unless he has to, which I appreciate. He is consulting with the cranial people to see when would be the best time to do corrective surgery. Also, there is a mass behind the eye that will need to be treated sometime in the near future.

It is still a matter of when.

Tuesday, October 6, 2009

Where does my help come from?


Recently, a beloved professor of mine from Fuller emailed me and pointed me to Psalm 121. It has always been a favorite because of its assuring words: my help comes from God, maker of heaven and earth.

I look at my son. He now pulls up his feet and likes to suck on his toes. He wraps his my arms around my arm as I change his diaper. He teaches me new words with his sounds. I praise God for giving my son life and breath.

This Wednesday we should hear something from Seattle Children's Hospital. The last word from a team of doctors in the Ophthalmology department there indicated that surgery is inevitable in the next few months; otherwise, the baby could develop further complications from the growth in the brain. The head doctor said that the tumor could be one of three things and has mostly a fluid component. It is unclear whether this growth is even connected to the baby's NF 1. The reason, said the lead doctor, is that growths in the brain related to NF 1 typically have a solid component extending into the upper eyelid. Tito's growth has no solid component, only fluid, in that left eyelid. Interesting.

Sunday, October 4, 2009

Prayers, Happiness and My son

At church today, Tito again charmed everyone with his good nature. The Church has been so supportive and it has revealed to me the Kingdom of God that Jesus promised. It is overwhelming the support we have received from everyone in our world. It has left us with the impression of how powerful prayer is to baby Tito's healing.

Tito has been so happy since coming home from Seattle. It is comforting to know how happy he is as we play the waiting game. Wednesday cannot come fast enough.

Friday, October 2, 2009

God Giveth

It is a worrying sight to watch a brigade of doctors, lead by the clinic's head doctor, walk into room. He then gives his opinion that our baby will soon have brain surgery.

Yuck.

Tito has become a great traveler and is starting to recognize doctors, but I wish that he would learn travel does not always mean medical and doctors. He has and will continue to travel for weddings and receptions. If only all his travels would be for fun, not for medical reasons. Such is life.

While we can appreciate the doctors' candor and reassurance about our son and his coming months, it is still hard to hear brain surgery and Tito in the same statement. The fact they looked at Tito's MRI and CT-scan for what seemed like hours made us fear when the door opened. A flood of doctors poured through with news that we had to swallow without water. The reversal from the doctor of the previous day makes us grasp at prayer.


So, now what? We wait for the tumor board next week. We were told probably no surgery and then told probably yes to surgery. It is hard not to worry, even as Tito is so happy. Now we have to wait until next Wednesday. Waiting on the news and the Lord.

Thursday, October 1, 2009

Update after first visit to Seattle Children's Neuro-Oncology

We were more than pleased with our visit with Dr. O'Neill and his nurse practitioner at Seattle Children's Neuro-Oncology yesterday afternoon. What an amazing place! Here are the latest details, starting with what we know for sure.

1) The baby is doing fine and is on target for growth and development, especially happiness!
2) The baby has NF 1.
2) The baby has left-wing Sphenoid Dysplasia (a condition marked by decalcification and abnormal growth of the side skull bone).
3) The baby has developed a lump in the rib area on the left side, probably a neurofibroma associated with NF 1. We noticed it in the last 2 weeks. Dr. O'Neill said that no x-ray is necessary because the specialists would do nothing about it at this point in baby Tito's life. The best thing to do is to monitor it with future scans.
4) The baby's soft spot on the head has closed early, yet the Dr. feels this is ok and within normal limits of development.
5) The baby will have a full body scan in three months to monitor the manifestations of his NF 1.


Here is what we do not know for sure, which is the best news of all:

1) It is uncertain whether the baby has a mass of some sort in the brain. After looking at the MRI and CT studies, the Dr. didn't see anything of concern that would require surgery. He thinks the Sphenoid Dysplasia is causing the baby's left eye to protrude, which is nothing out of the ordinary with NF 1 patients. To make sure, the Dr. is sending the MRI and CT scans to be presented before the Tumor Board at Seattle Children's next Wednesday, Oct. 7th. Dr. O'Neill will call us with more information after the meeting.
2) Dr. O'Neill will check to see if plastic surgery would help with the baby's disfigurement on the left side of his head and face due to his Sphenoid Dysplasia.

What comes next for us? We are still in Seattle. Today at 3pm, we return to Children's for a visit with the Ophthalmology department. There is still concern with the baby's left eye.

Thanks again for each and every one of you. You have amazed us with your support and concern. We will update the blog again after our visit today. Keep the prayers coming!