Thursday, November 19, 2009

We will return to Seattle Children's early January

In January, we will return to Seattle Children's with the baby. The point of this trip is to undergo a high-tech CT scan of the baby's head. Then we return to the Craniofacial unit for four appointments. We will meet the team of doctors who will operate on baby Tito. The CT scan and the four craniofacial visits will aid the surgeons in drawing up the 'surgical plan.'

Before our next trip to Seattle, the baby returns to a pediatric ophthalmologist, Dr. Snow, in Spokane in December. Dr. Snow saw the baby back in July as recommended by a geneticist. Dr. Snow found that the cafe-au-lait spots on the baby's body had spread to his right eye. These spots are being monitored because of their risk of turning into lisch nodules. The main reason for seeing Dr. Snow this time is to check on the left protruding eye. We keep drops in that eye every two hours then an ointment in at night to prevent the cornea from drying out.

Our son continues to develop into a happy, strong baby. He likes to growl, blow bubbles, chew on teething biscuits, and pull mommy's hair. Everything within reach makes it to his mouth.

Thursday, November 5, 2009

A final answer? We hope!

On Monday, November 2, we returned to Seattle Children's. Our visit was scheduled weeks earlier than anticipated. This time we had back-to-back appointments at the craniofacial clinic that took a few hours. The baby saw a pediatrician, a social worker, and a craniofacial plastic surgeon, Dr. Gruss. He walked into the room with a cohort of doctors from all parts of the world--Asia, Africa, Europe. After this team of doctors left the room, I asked the craniofacial nurse who all those doctors were. She said that Dr. Gruss usually has an entourage of doctors following him because he is well known in his field.

We think we have a final answer to what is happening with baby Tito, thanks to Dr. Gruss. This doctor has seen hundreds of similar cases in NF patients of all ages. The baby was born with a classic birth defect related to NF. There is no normal eye socket on the left side. As a result, the brain is seeping down and pushing out the eye. The sphenoid bone is disfigured (dysplastic) and bulging out of the left side of the baby's head. There is also a pocket of fluid but no tumor.

The doctor wants baby Tito to get stronger and to grow before doing surgery. Around his first birthday in the spring, the baby will have surgery in Seattle. The doctor indicated that it will be a lengthy surgery. I asked if this is serious. He said that it is not so much serious as it is specialized. It will involve himself along with a neurosurgeon. They will open the baby on top of his head in a zigzag to prevent any scarring on his face. The neurosurgeon is needed to hold the brain back and put it in its natural place while the craniofacial plastic surgeon builds an eye socket out of titanium mesh. Recovery will probably involve a short stay in ICU followed by 4-5 days in the hospital.

I look at my son and enjoy every moment I can before surgery takes place. I want to remember my son without scars. I will love my son with his scars and be there to hold him tight.

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.


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!

Thursday, September 17, 2009

Dear Loved Ones,

Thanks to all for your phone calls, notes, and emails of support. We cannot describe how fortunate we are to be blessed by each of you. Today, we heard from Seattle Children's Hospital. Now if only the Spokane doctors would call. Alas, we wait no longer. The medical staff at Seattle Children's have reviewed the reports of both the MRI and CT scans (but have not seen the actual images). They told us that there is no rush to get the baby there before September 30th. You can imagine our relief. The baby is scheduled in the Neuro-Oncology department at 2:30pm on Wednesday, Sept. 30th. The next day, he is scheduled with Ophthalmology at 3:00pm. We have no idea what will take place at these visits beyond a consult. Our baby continues to thrive. He offers us endless giggles and is starting to turn over. Like the Syro-Phoenician woman, we beg Jesus for the crumbs that fall from the table.

Visit Tito Sr.'s blog for poems and photos.

CT -Scan

Today, baby Tito had a CT-scan. We now just wait like starving penniless children in front of bakery window.

Tuesday, September 15, 2009

Baby Tito and his NF1

Dear Friends and Family,

Our son is now 5 1/2 months old. We cannot describe what a joy he is in our lives. Who ever knew that a child could be such a life-changing blessing? The toughest thing is looking at him and knowing that he has Neurofibromatosis type 1 (NF 1). What does this mean?

NF 1 is a congenital disorder
. Some 1 in 3,000 babies are born with it. It is a peculiar condition. No one can predict how NF 1 will play out in a person's life. It just happens to be the case that our baby has developed some of the features of NF 1 very early, starting with cafe-au-lait spots on his skin when he was 7 weeks old. These spots spread to his right eye by the time he was two months old. The good news is that Tito can see.

The concerning part is that the baby has developed a complex set of rare problems in his brain, all related to his NF. These include:

-a cyst
-a plexiform neurofibroma mass
-sphenoid dysplasia (sphenoid bone deformation at the left temple)
-thickening of the dura (the lining between the brain and skull)
-bulging left eye

Here is the latest. On Wednesday, September 16, the baby will have a CT scan. This study, along with the MRI back on August 7th, will help the group of doctors in Seattle determine a course of treatment. Depending on the results of the CT scan tomorrow, we may be heading to Seattle Children's Hospital by this Wednesday or Thursday. If the baby's manifestations require no immediate attention, then we are scheduled with a group of doctors on September 30th in Seattle. I think the immediate goal is to try to save the left protruding eye.

We are hopeful that help can finally reach our son after being caught up in the Spokane medical system where no help can be given to the baby and where the baby's doctors have not collaborated. (Baby Tito has seen 7 doctors since his birth).

Thanks to you all for your caring thoughts, notes, and prayers. You make all the difference as we face challenging moments.