We're home

Yet another whirlwind trip to Philly has come to an end.  It was a much better trip and we were busy the entire time.  We were able to stay at the Ronald McDonald House and that was wonderful.  For the few hours each day we were actually there, Jamison actually was able to play and they were so generous.  It was definitely much better than staying at a hotel even though we had to follow rules, best part for me they had HIGHCHAIRS!! lol  Feeding this child while he is on the go is not a fun task.

We received excellent news when we were there.  After Jamison's EUA was finished we met with Dr. Shields to find out the current condition of his eyes.  Originally he had one large tumor in each eye, about the size of a pea, and in his left eye he had fluid in the white of his eye along with seeds, small tumors, growing.  As of Dec. 15th, the fluid and seeds in his left eye are gone and the large tumors have decreased to about half the size they originally were.  They did do thermotherapy on his eyes, to help shrink the tumors further.  He will have scaring in his eyes from the tumors so we don't know to what extend that will inhibit his vision.  His right eye is going to be his stronger eye as it currently is anyway.  That was definitely wonderful to hear, I hope he continues having a great response to chemo.  After his EUA we went over to CHOP where they didn't have us scheduled so we had to be squeezed in and then he had his chemo.  It was much easier with the port.  The nurses just had to stick him once and that was that.  He slept for the most part on Wednesday from the anesthesia and was pretty out of it.  Thursday he went back for more chemo, my cousin Madeline who now lives in AZ happened to be in Delaware for business and she was flying out of Philly so she stopped by.  We had a nice visit and she got to meet Jamison.  When we got back to the Ronald McDonald House, a diabetic friend of mine, Robin, drove down with her boyfriend and brought us dinner.  They brought baked ziti and after every bite, Jamison would say, "mmmmmm."  He loves pasta so that was the perfect meal for him. :)  We had a nice visit with them as well.  Of course the snow put a damper on it.  They were driving from New York and got stuck in traffic because of the dusting of snow we received in Philly that day.  (I have to add that I did find it amusing to watch people walking fall down.)  Friday we were back at CHOP for his shot and the off to the airport for our trip home.

He did really well, Jeff was in row 6 and I was in row 21 so that really sucked.  But Jamison just slept on me the entire time and once we landed in Charlotte we were off to see another friend, Shannon.  She brought us a ton of wintery clothes for Jamison that her son had outgrown.  Somehow Cole skipped over winter in 18 month stuff and didn't have a lot in 24 month either.  So we certainly appreciate that.

Now that it's a week later...I wasn't terribly impressed with Jamison's CBC yesterday, some of his counts were already on the low side and I got a phone call today asking me to take him up on Monday to get his levels rechecked.  I had to take both boys to the pediatrician today after a terribly long night of whining and crying.  Cole still has an ear infection in his left ear, and Jamison now has a double ear infection all on top of the congestion and coughs.  So now they're both on strong antibiotics.  I'm so relieved they're letting him be treated out-patient, I was a little worried they would make him be admitted to the hospital for Christmas which would have postponed Christmas because Cole wouldn't have been able to visit because he's sick.  But that's all forgotten now as long as Jamison doesn't spike a fever.

Well, Happy Holidays and a very Merry Christmas to everyone.  I hope everyone shares this special time with their loved ones and gives their children extra kisses.  Much love to all!

Trip #2

We leave tomorrow for Philly.  I'm so anxious about this trip.  I can't believe a month has already passed and yet it seems like it will take forever for April to arrive.  Jamison has an EUA on Wednesday and then we'll take him to CHOP for his second round of chemo.  After his EUA we should be given some indication of how the tumors are responding to the chemo, so please say an extra prayer for him on Wednesday.

He's been wonderful the last two weeks, running around and playing acting like normal and eating like crazy.  Even the day after he had surgery, you would have never known he had surgery just by looking at him.  He was being silly and being a one year old.

Today I took him for his physical and his 15 month check up even though he won't be 15 months until the 17th.  He is down to 27 lbs, from 28.5 last month.  Fortunately he does have the weight to lose if he must.  His hair is really thinning out, but not completely gone yet.  It actually stopped falling out so we figure about a week after chemo this time he'll probably lose the rest.

I took Coley to Grandma's and Grandpa's, well, we met in Simpsonville, but he went there yesterday.  He was very excited to go back there.  He gave Jamison a kiss before we left and I thought that was super sweet.  He's such a good big brother when he's not pushing Jamison around. :)

We should have arrangements made for where we're staying this time.  We're either staying at the Ronald McDonald House, or we're staying with a family through Hosts for Hospitals.  We're taking Jamison to a little party at the RMH tomorrow night, even if we can't stay with them.  If we're staying with the family, they're actually going to be out of town until about 9 and the RMH said we could hang out there until the family arrives.  We just have to wait until tomorrow morning to confirm which one we're actually doing.

Please wish us luck, and pray for our sweet Jamison.

Port placement

Jamison had his port put in yesterday and everything went really well.  Okay, first let me vent.  His surgery was scheduled for 10:30, meaning we needed to be there at 8:30, he couldn't eat after midnight and could nurse up until 4:30.  Fortunately he woke up at 2:30 and nursed, then again at 4, so he finished nursing right on time at about 4:30.  I know that surgeries tend to run a little late, I understand things happen.  However he did not go in to surgery until 2:40.  His surgery started over 4 hours late and there were only 2 surgeries ahead of him.  He missed the cut off for peds recovery and had to go into the adult room.  He was so grouchy until I got him to sleep around 12:30 because he was absolutely starving.  I just think that is cruel to do to a young toddler.

Anyway, his port is now in and he's doing wonderfully.  As soon as we got home last night he was running around playing, eating like a mad man to make up for those missed meals.  He is such a sweet goofy little boy.  I really think and hope this port will make this a tiny bit easier on him.  I know none of this is easy on him, but this will at least allow him a few less needle sticks.

Our next step is heading to Philly on Tuesday.  He has an EUA on Wednesday and then chemo Wednesday and Thursday.  I'm so nervous about the EUA because we should get some insight as to if the tumors are responding to chemo, so please say an extra prayer for him on Wednesday.

Port time

Jamison had to go for a CBC today and the blood work came back excellent.  After that we headed over to Dr. Adkins, a pediatric surgeon.  Fortunately they were able to squeeze Jamison in for his port placement on Thursday morning at 10:30.  He said they'll make a small incision near the base of his neck and place it in his chest.  I really don't have a lot of information on it, but I guess I need to start coming up with questions to ask.  I hate that he has to have a port put in because it does increase his risk of infection, but at the same time he won't have to endure countless hours and needle sticks attempting to find a good vein.  It will make things so much easier on him, but I'll be so nervous about everything.  I'll mostly be worrying about Cole being gentle with Jamison.  He's only 2 1/2, so what can I expect, and while they place nice most of the time, Cole does belly bump him and knock him down or walk right up to him and Jamison loses his balance, or if he's on the floor Cole will come over and occasionally lay on top of him.  He's just trying to play.  So pray for our sweet boys, especially Jamison at 10:30 on Thursday, or as you know with doctors, probably closer to 12. :)

The face of cancer

I have to admit while searching for these pictures I did become a little angry at myself.  I know I can't dwell on it, but I feel as though I should have caught Jamison's cancer sooner.  I brushed it off as for every "bad" picture we took, meaning with a white or grey eye, there were 75-100 "good" ones.  This is just something to look out for when taking pictures of your sweet babies or of other people's sweet babies.  I know I have a lot of friends who are venturing or are pros in the world of professional photography.  It's not a tell-tale sigh of cancer, it can honestly just be bad lighting.  There are only 250-300 new cases of retinoblastoma diagnosed in the US each year.  But if you're seeing this pop up in multiple pictures it can't hurt to get them checked out.  There are a lot of pictures below.  His "white" eye started showing up when he was 6 months old, in March 2010.

Then there are special pictures like these that let me know he has an angel watching over him and protecting him. 

Small update

There isn't too much to update right now.  We're still waiting on his port, his platelet count was only 25K, normal is 150K-400K, so that's so low that he could actually start spontaneously bleeding.  Of course he just started the head banging phase and now is covered in bruises if you see the pictures from banging his head, falling, getting tripped by Cole and just walking into things.  He should be in his lowest point and his platelets are hopefully regenerating.  CHOP was actually surprised they didn't do a transfusion down here because the lowest they let them get is 50K.  I have some things to look out for in case his levels are actually getting lower and not improving so we'll be watching him like crazy.  I take him back Tuesday for another CBC and hopefully we'll have better news, the rest of his results were fine.  After his CBC we'll head over to talk to the surgeon about his port.  If his platelets are still low they should give him a transfusion so they can do the surgery and he will have time to heal before his EUA (exam under anesthesia) and chemo on the 15th.

Pictures of our loves

Sporting some new looks from lovely friends.

 

 Bruising on his forehead, under his eye and a lovely runny nose to go along with it.

Leg & foot bruising

Pre-hair cut

Happy boy just ate some spaghetti.  yummy

Not so sure about this hair cut stuff!  First one for him. 

He wouldn't smile, but he's cute anyway. 

Cole eating applesauce...not even sure how that happened.  lol

 I am so cute.

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.