Princess Sophia ;-) Lil brother, Gabe ;-) baby sis, Giuliana ;): September 2009

Here is a recap of what has been happening over the past week and a half.

Get your reading glasses on and grab a cold drink. I plan on doing quite a bit of writing.

First of all, Sophia has a bump on her right eyelid. It has been there since she was 3 months old. We informed our pediatrician about it at Sophia's 3 month appointment and we were told to keep a close eye on it (no puns intended). So like good, first time parents we did as instructed and watched it like hawks... then at Sophia's 6 month appointment with her pediatrician, we were told by her pediatrician that we should see a specialist. So we were referred to the Nemours Clinic in Jacksonville Florida (look it up, it's one of the best). So, we thought great, we will have a good doctor (specialist have a $40.00 copay - so they should know what they are talking about, right?). So, we take Sophia to Nemours, where she is seen by Dr. Dawn Duss an Opthomologist and Research surgeon.

Well, Dr. Duss feels the need to dilate Sophia's pupils, just to make sure the bump on her eyelid is not impairing her vision or will not have future effects on Sophia's eyes. Ok, fair enough. Then she tells us that we should get an MRI performed on Sophia, just to be sure that there isn't anything "else" going on. Well, ok we agree to that. Since the dilated pupils didn't reveal any problems. We thought that MRI would seal the deal, that there wasn't anything "behind the scenes that we should know about".

Well, last Monday we go to Baptist Medical in Jacksonville for the MRI, the staff was awesome. The procedure was fast and we were out of there in no time. But, if I can play the Parent card for just a second.... Sophia had to be put to sleep for the MRI. So, once it was done, Mike and I were allowed to go back into the "area" and get our daughter. Well, she had to have an IV to put her to sleep so she didn't wake up during the MRI (ok, we can understand that, you guys don't want her to wake up in a foreign area and freak out).

You guys, let me just say... Sophia was not the baby we have seen since birth. When we went back there to get her, she was a limp noodle. We had to hold her head, we had to make sure she didn't fall out of our arms because she was not aware of her actions, let alone her surroundings. It was the hardest thing in the world to witness as a parent. I DO NOT wish that upon anyone. We had to put her clothes on her while we were holding her like she was in a straight jacket so she wouldn't fall to the cold hard floor. Then we had to monitor her the rest of the day so she did not injure herself. She also had 3 sticks on her hand from the IV.

OK - once we made it past that.... Monday night, Mommy gets a call from Dr. Duss. She proceeds to tell me that the MRI revealed that there isn't anything "growing" in Sophia's brain or on her bone structure around her eye. So, I think GREAT! Well, Dr. Duss had something else in mind. She said that she did see something else and she was going to let another doctor look at the scan and get back to me on Tuesday. So, I called our Moms. I didn't tell Mike, he had duty and was asleep at the time. Why should I wake him up so he can worry all night with me and then go to the submarine and worry the rest of the night and early morning?

Tuesday came.... Mommy and Daddy are at work. Mommy gets the phone call from Dr. Duss at lunch time (while at work, in a room with 5 other people, there isn't any privacy where I work). Dr. Duss proceeds to tell me that she showed the scans to another specialist from the Mayo Clinic and she recommends that we bring Sophia back to Baptist Hospital the following Wednesday (September 23rd, keep that date in mind, please). She and the other Specialist, Dr. Kostick feel that Sophia needs a biopsy. Just to be sure that what we are looking at isn't something that could KILL Sophia. She tells me that over the phone......

So, Dr. Duss informs me that Dr. Kostick will be performing the biopsy and she is going to assist. She then tells me that she feels like this is urgent and we need to get Sophia back to Baptist Medical on Wednesday, September 23. OK, WOOOOHHHH, I finally got a chance to talk. This woman talked MY ear off and that is hard to do! I talk alot! Anyway, I said, " Why is this so urgent? Please don't schedule this yet, I need to talk to Mike." Then she proceeds to tell me, " Well, what could be growing in Sophia's eyelid could be in direct relation to something that could kill her." I said, " I understand worst case scenario but you haven't given me any reason to believe that we are dealing with the worst case scenario right now." I also said, " I need to talk to my husband and I will call you back." Well, the conversation was pretty much over at that point.

Then at roughly 4:00pm, she calls me back. I am on my way home from work. She starts telling me how important it is for us to get Sophia into the hospital for a biopsy because if we don't we could be dealing with a life threatening problem. So, I say to her, " Why is this so urgent? You haven't told me why we have to do the biopsy next week, you haven't given me a good reason why this life threatening, please explain?" She then talks again for another five minutes and I finally cut her off. I said, "Lady, you talk to much. Will you please tell me why this so urgent, you haven't said this was cancer or anything?" She said, " WELL IT IS." I said, "Well, it is what?" She said, " Well it is CANCER!"

(OK - EVERYONE. I was trying to keep my composure with her. If you know me, you know that I am a very level headed person and I tend to see things for what they are.)

I asked her to please define cancer for me. She said," a foreign mass of cells in an unknown region." I said, " Lady, I have lost my composure with you, I can no longer speak to you on a professional level. I have to hang up the phone now." So, I hung up the phone and cried all the way home.

Got home. Mike was highly upset because I was crying and shaking. He asked me what was wrong and I told him.

Now I will bypass all the crying, nightmares and horrible thoughts that he and I have shared between then and now. So if you have tried to contact me in the past week, I am sorry if i haven't been a good friend, sister or daughter. I have been VERY upset. Not to mention worried sick over Sophia!!!!!!

Wednesday, September 16th. Mike calls Dr. Duss and tells her to forward all of Sophia's record to our pediatrician. She does this. She also tells him ALOT but the highlight is, that in the medical field they use the words, cancer and tumor interchangeably....(yea)

Thursday, September 17th. Mike and I stay home from work, T-T was sick and we needed to get this sorted out with Sophia. We get a call from our pediatrician first thing in the morning. We talk it over with him (This is after we called him on Tuesday). He recommends the biopsy. He then informs us that he has no idea what to tell us and no idea what is going on. Hence the reason why he sent us to the specialist in the first place. He also tells us that he will have his secretary compile a list of doctors that specialize in eyes and he will have her give that to us. He also tells us that he isn't trying to discourage us from getting a second opinion but that there are not that many doctors in the world that specialize in infant opthomology, let alone eyelids. So we had our work cut out for us. We said that was fine. We would NOT go back to Dr. Duss.

That afternoon, we picked up the list from our Pediatricians office. We made some calls. We found another doctor. His name is Dr. Smithwick (Eyelid specialist). We found him by way of another Opthomologist that we called. The other Opthomologist recommended Smithwick. We said ok, and we called him. WE made an appointment for Wednesday, September 23rd (The day that Dr. Duss wanted us to have the biopsy performed on Sophia).

Just to throw this out there... Friday night we had dinner in Jacksonville. While we were eating, we noticed an RN sitting next to us. Well, I talk to much. I asked her where she worked. She said, St. Vincents (location of Smithwick). I said, "GREAT! Do you know Dr Smithwick?" She said," Yes, I do! He is good people!"

Ok, So we made sure they had Sophia's records at Dr. Smithwick and we confirmed our appointment, all on Tuesday the day before the appointment.

Keep in mind, we have been stirring over this all week, our parents and siblings have been the only family, pretty much. With the exception of some other family members, that have been privy to this information. We didn't feel it was accurate. So we didn't want to broadcast it, just yet.

Tuesday (yesterday) came. Last night, Mommy said the rosary for our baby girl. I want to tell you guys, after I said the rosary. I had a calm come over me, like nothing else. It was like God was telling me that everything was going to be ok. I didn't have a nightmare last night and we played with Sophia like we did before the MRI. IT WAS FANTASTIC!

Today, Wednesday September 23rd. We walk into Dr. Smithwicks office. Almost immediately, Mike and I felt relieved. (Crazy, I know). The nurses were fantastic, they asked us if we had the cd from the MRI? Well, no we didn't, hence the reason for us calling them on Tuesday to make sure they had everything. So, Kathy -one of the nurses. Calls Dr. Duss and requests the cd from the MRI.

No kidding, Kathy got in her car and drove over to Dr. Duss's office and picked up a copy of the cd. She then brought it back to Dr. Smithwick and had it in his hands before we left from our appointment (God was smiling on us).

Ok - let me back up a little bit. So, we arrive for Sophia's appointment and go back to see Dr. Smithwick. We aren't sure if he knows the history of our encounters with Dr. Duss but let me tell you. This man was very professional and his primary concern was, Sophia. (Isn't that what a Doctor's primary concern is suppose to be? The patient?)

Anyway, he examined her eye. We had to give her a bottle so we could distract her long enough for Dr. Smithwick to examine her. He performed his exam.

Then it was time to talk. He told us that Sophia has a vascular hemangioma. She has a benign cyst. Something that is common in infants. He said that the cyst might not be pleasant to look at, there isn't any need to perform a biopsy. The hemangioma is soft and spongy. He said if it isn't causing Sophia any difficulty then he basically said, leave it alone. There isn't any reason to mess with the child.

He then told us that if she had cancer then the cyst would be hard. There would be other indications, those of which were not displayed by our daughter.

He reviewed the MRI scans and called us later to tell us that the scans did not reveal cancer.

His final assessment was for us to monitor the cyst, if it changes to call him. Other wise, go to a 3 month follow up appointment with an Opthomologist to ensure that the cyst is not damaging Sophia's eye.

Let me just say, you NEVER want anyone to tell you that your child has cancer. Then for someone of the medical field to say it with such ease, was very hard to for Mike and I to accept and swallow.

SO... that was what happened. What are we going to do you might ask? Well, we will file a formal complaint with Nemours Clinic and with the Medical Board of Opthomology.