ER visits and Hospital fun (or not)

We have had a crazy week.  When we got home from Philly, Jeff had a bit of a runny nose and I had a little cough.  Cole decided to put those two together and get a virus.  On Tuesday night/Wednesday morning he woke up gasping for air, screaming, crying, just miserable.  I put in a call to the on-call nurse immediately but I was impatient because we were having difficulty calming him down and he was telling me, "ow, ow, ow, Mommy." Since I needed to be home if Jamison woke up, I sent Jeff to the ER with Cole.  He had croup and an ear infection. I'm sure you can only imagine our past few days with our high strung Cole on steroids.  Let's just say it hasn't been fun.  But we can't blame him, he's just a bit more aggressive, fighting sleep, but his last day of them was yesterday so hopefully he'll be back to normal soon.

Thursday we had an uneventful day just hanging out, Jeff's aunt and uncle brought us over some yummy food and my parents ordered us a yummy meal so we had plenty of food.  No turkey, but ham, I love ham.  Thursday night I tried to go to Toys R Us for their madness...let me say, that was just laughable.  Never again will I ever even attempt that.  Friday I got to Kohl's around 3:30 am, got everything I went for and I'm sure some extra.  I hit up Home Depot and Lowe's for Jeff and then Target and Walmart before getting home at 7.  I laid down when I got home but little Coley came into the room around 7:30 with a sweet, "Mommy, wake up."  At 11:30 we noticed Jamison was a bit warm.  From 11:30 until 7:30 his temp was hanging around 100.6 and 3 temps above 100.4 means hospital for him.

Jamison and I got packed and headed to the Children's Hospital ER.  A silly little virus caused him so much pain.  In the ER he got stuck 5 times trying to find a vein to put an iv in and take some cultures.  I understand he's a difficult stick and his veins roll, however, I do not understand why the nurse was sticking him in his ligament in both wrists.  Another more experienced nurse informed her of that.  We got there at 8:30, at 2:15 they finally took us up to the cancer and blood disorder floor so he could be admitted.  The night nurse was horrific.  She couldn't speak to me, just stammered, woke him up multiple times and just irritated me beyond belief.  We played all day Saturday in the hospital, Jeff came up at some point and I went home to play with Coley who had no interest in playing with me. :)  Since Jamison's CBC was coming back low in multiple areas due to the chemo we had to stay another night.  I did watch the glorious Carolina/Clemson game and that was about the only good thing in my night.  At his 12am antibiotic push the idiot nurse realized that his iv was leaking.  Apparently she can't do iv's because she called some other people in and they stuck him three more times before giving up.  They called the doctor and she said not to worry because he hadn't been running a fever when we were there and since Cole had a virus it was most likely the same thing.  They just had to make sure it wasn't bacterial.  Sunday we played some more and he walked right into a gaming system in the playroom.  So not only is he covered in bruises where they stuck him 8 times in less than 24 hours, he also has a lovely bruise on his head because his platelets are low.  They FINALLY let us go at 3 on Sunday.

This was definitely not the relaxing lazy weekend we had planned.  He will be getting a port put in, hopefully before we head back to Philly, I should take with someone about it tomorrow when they do another blood draw.  We appreciate continued prayers.

Finally an update

My poor baby.  Really my poor family.  We have been through so much in the last week and a half.  It's hard to process it all but we're working on it.  In a whirlwind we flew up to Philly on Sunday, he had an excruciating appointment on Monday.  His appointment time was 10:00.  We finally got checked in at 12:15, then we FINALLY met with the doctor at about 3:00.  They did another ultrasound on his eyes, that was quick and not painful.  But then came the hard part.  They had to clamp his eyes open again, which I was expecting.  Two male doctors held him down while Dr. Shields poked around his eye with a cotton swab so she could get a better look at the tumors.  She confirmed the diagnosis and set up an appointment for a EUA (exam under anesthesia) for Wednesday morning.

Tuesday we met with the oncologist, Dr. Leahey.  She explained the medicine he would be given, three different medicines are used in chemotherapy.  Then she told us all of the many risks and side effects.  Not what you want  to hear, but we need to expect it.  We took a little tour around the floor so we would know where to go on Wednesday.  Dr. Leahey was blunt but we feel like we got more information from her than we did from Dr. Shields.

Wednesday was back to Dr. Shields for an 8 o'clock appointment.  He was finally called back at 10, then we went through all of the talks with the different doctors that would be assisting on his exam.  Someone also approached us for genetic testing and since it was a clinical study they were working on, it would be free so we went ahead and did it.  It did involve spitting, which I am horrible at and gagged quite a few times.  lol  After they took him back we were in the waiting room and met a few other families who were either going through or had recently gone through this and it was comforting to talk to them.  They finally called us back to talk with Dr. Shields and she told us everything should be fine, his right eye is having some of the vision blocked and the cancer in the left eye is a bit more aggressive and larger.  We were left to wait on Jamison to wake up.  We needed to be at the other hospital by 2 to start chemo or there was a chance he would have to be admitted.  Around 12:30 we finally found someone to ask about him they said he was still sleeping but then they realized we needed to get to the other hospital and brought him out even though he was still extremely groggy and 3/4 asleep.

When we got to CHOP, they informed us on the ratings of his eyes.  They are rated A, B, C, D and E.  A being the best, E the worst.  His left eye is a D and his right eye is a C.  Unfortunately this means a more aggressive chemo with higher concentrations of two of the medicines and it also means he'll need a port put in.             But he doesn't have E eyes, and E means removal.

He did really well with his chemo on Wednesday and Thursday, eating somewhat normally and sleeping normally.  Friday, though he vomited all over the chair in the hotel room.  Then he slept the entire flight from Philly to Atlanta.  In Atlanta he vomited all over me twice, but I had a couple changes of clothes for us both.  Then he slept from Atlanta to Columbia.  He has vomited both mornings, but is regaining his strength and is smiling a bit more.  It's nice to see him smile and laugh.  We got our Coley Bear back Saturday afternoon and we have been snuggling and playing with them since.

Jeff's going to work tomorrow and I'm a little nervous about that because Jamison is definitely being more clingy and needing to be held more.  But I know he will come home if I need him.  And he only has to work 3 days before Thanksgiving.  We're not traveling for the holidays because we just got home and are exhausted. I have to take Jamison to the Children's Hospital down here on Tuesday to do a CBC and talk about getting his port put in.

Keep praying for him and we most certainly appreciate all of the love and support we have received over the last week from family and friends.

Yes, I am this cute.

 playing outside with mommy, daddy and Coley.

 It was a little windy.

 Go Bengals!!

 Playing with the cabinet in the hospital room.

 Open...close, open...close, over and over and over again.  My poor little arm was all bandaged because of the IV.

And my brother is this handsome. 

day two...

This is when it got real.  He noticed a white reflection immediately out of the left eye, white is the color of the tumor.  He needed to get a better look in both eyes but due to Jamison only being 13 months old that wasn't going to happen easily.  I had to hold his feet, a nurse his head, and the doctor had to pry his eyes open and clamp them open so he could get a good look.  He noticed white reflections in both eyes and started to talk to me about it.  I knew immediately where he was going.  He then asked about pictures of Jamison and if he ever had a white reflection instead of red eye in them.  Well...this picture was taken in March 2010.

Looking back at the photos he started getting a grayish tint in the late February pictures but in March he started reflecting white.  You can notice that his right eye, the one with smaller tumors, is reflecting red as it should, but the left eye is reflecting the color of the tumor. 

After a long agonizing exam for him he told me they would set up some appointments at Palmetto Health Richland for the following day.  I guess the hospital was giving him a hard time about scheduling the ultrasound and CT scan so he called me and told me to go straight to the hospital after I went home and packed a few things.  He was hopeful they would do the CT scan that night and the ultrasound in the morning.  Well, we waited forever and at about 10:00pm they came in so we could take him do for the CT scan.  The doctor who was going to do it told them there was no way he would be able to get accurate pictures and it would be silly to subject him to the radiation for no reason.  I completely agreed.  I mean he was going to be put under anesthesia the next morning for the ultrasound so why not do them together.  Friday morning we went do for the ultrasound, they started at 9:41am.  Shortly after the doctor came in and told us he was 90% certain it was bilateral retinoblastoma.  He showed us the pictures of the tumors and let us see that the left tumor was in front of the optic nerve and the right wasn't.  His left eye is currently at a +5 for vision meaning he can't see very much out of it.  His right eye is still seeing 20/20.  The CT scan was to confirm that it was this and the confirmation came with the knowledge of white calcium deposits in the tumors. At 11:00am they came to get me so I could go back to recovery and be with him while he woke up.  He immediately wanted to nurse and cuddle.  However as soon as he was able to open his eyes he wanted to get down and play.  He kicked off his heart monitor and his blood pressure sensors, along with his hospital ID bracelet that he had been kicking off all day.  

After many meetings with nurses, peds doctors, the peds hematologist, and Dr. Cheeseman we were left with the daunting decision of what to do next.  We decided to go with the place Dr. Cheeseman highly recommended, The Wills Eye Surgery Center in Philadelphia, Pennsylvania.  We now have an appointment at 9:45 on Monday, November 15, 2010.  Today we spent the day running around trying to get things accomplished so we would be ready to meet with the new doctors.  I had to run downtown to get Jamison's birth certificate because some of the financial assistance programs need it and for whatever reason it kept getting pushed to the back burner.  Then I had to run to my endocrinologist's office to get a letter for flight clearance to board with insulin and all other pump supplies.  Then on my way home the Wills Eye Surgery Center people called to set everything up.  They asked that Jamison have a recent physical and a hearing test done because of the hereditary hearing loss on Jeff's mother's side of the family.  They wanted a baseline since chemo can affect the hearing. 

Although we haven't met with the doctors who will primarily be caring for Jamison yet, we believe the course of action is going to be a combination of chemo therapy and laser therapy.  We have high hopes that some of it will be able to be done in Columbia, but some will involve travel to Philly.  We are both at a loss because who would ever consider that they are going to go through something like this, however we're also thankful because we know it could be so much worse.  Our first goal is obvious, save sweet Jamison's life.  Secondly we hope to save his eyes, and third we hope that his sight will be restored in his left eye.  It is hopeful that as the tumor shrinks the vision will return. Please continue to pray for our sweet lovely boy.  We are so thankful for our support from family and friends and even strangers who are being touched by him.  We love him so much.  

Cole is being a great big brother, though still doing big brother things.  He runs up to Jamison and gives him hugs and then turns around and knocks him down.  When I told him that we might have to leave him with someone next week he looked at me so sadly and whined, "nooooooo."  Poor baby.  I know he's too young to understand.  

Here's to looking forward to the huge cancer free blow out bash we're going to have when this is all over.  

Retinoblast---what?????

Retinoblastoma.  A word I am still struggling to say, a word that means cancer.  Bilateral Retinoblastoma, a rare cancer of the eyes, makes up about 3% of cancers, mainly affects young children.  My sweet baby Jamison has cancer in both eyes, as of today, we know he at least as one large tumor and 3 smaller tumors in each eye.  The good news is that it's curable.  A curable cancer is a manageable cancer.  I don't really know much about our journey other than it began yesterday.  Well, it began a few months ago, I guess, but yesterday was the day we heard the C word.  I know a lot of people who have survived cancer and some who haven't fared so well.  But to be hit with that for your 13 month old child is just heartbreaking.

Jamison's left eye would lose focus and drift, it had been occurring for months.  When I first brought it up to his pediatrician at his 9 month well-baby check, he suggested we just keep an eye on it, to see if it got worse.  I didn't push the issue, just assuming it was a lazy eye and maybe things would improve.  At his 12 month appointment, I brought it up again.  It seemed to be getting worse, more people were noticing it and I wanted to address it while he was young.  I read about lazy eye surgeries and how children could lose sight if the eye wasn't fixed, I didn't want that to happen.  So after about a week I hear back from the office with an appointment for the Opthamologist.  His appointment was for November 10, 2010 at 1:30.  The timing wasn't great but for whatever reason we decided to keep the appointment and just rearrange our schedules accordingly.  At first look Dr. Cheeseman (yes that is his name) agreed that it looked like a lazy eye.  He wanted to dilate his eyes to just make sure there wasn't anything else causing the eye to drift because there were uncommon diseases that could do that.

To be continued...