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.