Tuesday, July 23, 2013

At the beginning

I chose the name of this blog from something my oldest child told me. When his brother arrived home with a patch, he ran off to get some things, came back in the room, and told me "Mommy, we can be pirates TOGETHER!" I have tried to hold onto that through this journey. He didn't think anything of the patch, just showed his love for his family.

But back to the beginning. My oldest child, B, was born on the longest day of the year in 2010. I stayed home with him until he was six months old, then returned to my job as a speech-language pathologist part time. When he was 18 months, we decided to try for child #2.... And got identical twins! It was a huge surprise and hard to swallow. Initially, my first doctor thought we were having mono-mono twins, meaning there was no dividing membrane within the shared placenta. Big scary diagnosis, as it has a higher in utero mortality rate, likely extended bedrest, super early delivery, and high risk of complications. We later found out they were mono-di twins, which was still higher risk but much easier to manage.

 I delivered them at 37.5 weeks via c-section. F was born first, followed by W two minutes later. W spent a few hours in the NICU for observation with his breathing but we were all together by evening and discharged together several days later.

Life with twins and a toddler was hard. Recovering from my pregnancy and birth was hard. Adjusting to being a stay at home parent was hard. The boys were not good sleepers and slept either in bed with us or in their swings in our room for the first two months. The off set ticking of swings will haunt me to my death. I was so tired I would be delirious some days. I was battling really nasty depression and exhaustion.

Eventually, we got into a rhythm. We were able to leave the house each day and go to the library, go to play groups, go to the store. It was never easy, but I eventually got the hang of it. From the beginning, F was a fussy baby. W was feisty but he was able to go with the flow and be more independent. F was a Mama's boy and cried and whined frequently. I told my mom "I feel like I as missing something with him." 

At four months, I saw a white dot on his pupil. I was the ONLY one who saw it. My husband didn't see it, my mother didn't see it, the pediatrician couldn't see it even with an ophthalmoscope. But it bothered me. I saw it every time I nursed him or changed him, it was all I saw.

A month later, it started to change and grow and impact his iris. Other people noticed, but only when I pointed it out to them. I worried a lot and talked about it to the family. His pupil wasn't reacting like it should right before his six month pediatrician's appointment. 

When I brought it up, it sounded alarms to our nurse practitioner. He brought in our doctor and she didn't know what it was, but didn't like what she saw. The appointment was on a Thursday. On Monday, we were at the pediatric opthamologist. We were there for hours and they dilated his pupils and did an ultrasound on his eye. The poor kid was miserable and we both cried through most of it. At the end, the doctor told us he had bad news. There was some sort of mass in F's eye. He had little to no vision in his left eye. More than likely, it was cancer.

My heart sank. I didn't know what to do. We were overwhelmed enough with our three boys and now we were faced with the possibility of a terrifying diagnosis. 

They wanted us to go to Massachusetts Eye and Ear Infirmary to see Dr. Mukai, one of the country's only pediatric retinal specialists. We went down two days later. F was evaluated under anesthesia. We got more bad news. It was a tumor and a cyst that was taking up most of his eye. Dr. Mukai believed it was either retinoblastoma or an intraocular medulloepithelioma. Either way, his eye needed to be removed.

Let that sink in for a second...they needed to remove HIS EYE. 

If it was retinoblastoma, all the boys would have to be tested. It is sometimes hereditary and has a genetic component. It can sometimes spread and also puts you at higher risk for secondary cancers. If it was the IM, it would be a one in a million diagnosis. Go ahead and google it. By the second page, there are articles about animals with it, telling you how rare it is to find in humans.

A week later, we were back at MEEI for surgery. Enucleation is day surgery. We were there in the morning and left that evening. Seeing my baby bandaged in recovery was the worst experience of my life. The nurses had to pick me up off the floor. I hope that that day is the worst day of all our lives.

We brought him home the next day. The only pain meds they give is Tylenol every few hours. The first few days were awful. On top of F's surgery, my husband had viral conjunctivitis. Then B got bacterial conjunctivitis. It was several days until we were all together again.

F was immediately an entirely new kid. He did not seem in pain and was immediately happier. He had a huge bandage with packing for the first few days.

He started crawling just a few days later. We had to remove the dressing that weekend. I will be forever grateful for my mother doing that. He had a stitch in his eyelid for healing purposes. We were told we could patch it if we wanted but to leave it uncovered as much as possible.

The opthamologist took the stitch out in his office about a week after surgery. F's eye just appeared closed and slightly sunk in.

We got our results after about two weeks of waiting. We found put F had an intraocular medulloepithelioma, as Dr. Mukai had thought. In almost all cases, the tumor is contained in the eye and no follow up care is needed as long as the margins were clear. If he had tried to take a sample, it would have likely broken up and spread. We are so thankful he knew what to do. Several weeks later, we did find that the margins were clear but the tumor had a low level of malignancy.

F is being careful followed by the local Children's Cancer program. For now, we do regular MRIs to ensure no cancerous cells spread. 

His work with the occularist and early intervention will be in different posts.

It has been quite an ordeal for our family, but we are now starting to see the other side.  People frequently compliment us about how positive and strong we have been through this. What other choice do we have? We have three kids who need us.