I was asked to move my blog to caringbridge.org because it is more accessible.  I'm not crazy about the format because there are image limits, but that's where it is now. http://www.caringbridge.org/visit/coleandjamisonporter

Clinic day 1

Now that I can actually sit down and think, today was actually kind of sad.  Cole had his first clinic day.  You might think, oh what's the big deal.  Well, for 6 months Cole would go to the clinic and play the entire time we were there.  He would have a blast.  Today, however, Jamison got to play and Cole had to get him BP, Temp and blood drawn.  It wasn't a horrible time for him, however as with anything lately he fought that blood draw harder than anything.  He is so strong.  We had both of the lab techs in there, one holding his legs between hers and holding his arm down.  They first attempted a finger stick, but he was fighting that so much that they had to use his arm.  So there I am, holding him in my lap, holding his one arm down, he is screaming at the top of his lungs, crying so hard and we're all just manhandling him to get a tiny amount of blood.  Heartbreaking! His labs were good, though, so we go back in a week.  I spoke with the doctor about his bactrim, and he said with the amount of chemo he's getting, it could be argued that he doesn't even need it, so as long as we're attempting, he's fine with that.  He also sent us to the store to get something to try and help Cole with his BM's.  It's been almost 2 weeks, miralax has not helped at all, we can't do enemas, so we're going to try this...assuming he will drink it.  I also spoke with the social worker and got a ton of new forms to fill out.  Oh joy.

I think Jamison had a fun time.  The nurses all kept going to him instead of Cole, thinking we were there for him.  No one could believe we were back with another child.  But we were..and we'll keep going back, at least for 6 months.  Then I can hope we never step foot back in those doors again, right?

Philly, we'll be back soon.

I still cannot believe we're headed back to Philly on a monthly basis. I purchased our tickets tonight for next month.  Let's hope we can get NCCS to help us soon, I should know more about what we need to do with reapplying for another child when we go to the hospital on Thursday for Cole's first CBC.  I'll meet with our phenomenal social worker again and see what we need to do. Although I do know we're her first case in which more than one child in a family has cancer, so this will all be new to her as well.

We'll fly out on Oct. 10 because tickets were considerably cheaper to fly out on a Monday vs. a Tuesday...to the tune of $900 cheaper. So we'll just get a hotel room, hopefully just for the one night.  Right now we're thinking we'll take the boys to the Please Touch Museum again.  They really seemed to enjoy themselves there and really did not want to leave.  It was quiet since school was in session and it was a weekday.  RMH can likely get us in for free, so that's a bonus.  Free fun in Philly, you can't find that too often.

Cole is still doing well.  He's still a bit hyped up, but he is also really constipated and won't take his medicine.  He's is difficult.  With a one year old we would just give him his medicine and rarely did he spit it out.  With a three year old we have to hold him down and still get the medicine spit back at us.  Another question for Thursday, is there an another way we can give Cole his bactrim, tylenol with codeine and zofran because liquid is not working. Who knows what tomorrow will bring.

Cancer sucks!

As most of you have read, Cole was officially diagnosed with Unilateral Retinoblastoma on Monday, Sept. 12, 2011.  10 months and one day after Jamison's diagnosis of Bilateral Retinoblastoma on November 11, 2010.   They found one small tumor in Cole's left eye.  To say we are shocked is an understatement.

A little background.  When we did genetic testing we did find out Cole was  a carrier.  However he had two clear dilated eye exams, locally at that time.  He also had a clear MRI on his brain.  All of their doctors were reassuring that he would likely not have any problems with RB even though he carried the mutation.  He was 3, Jamison had it first, he showed no signs, his appointments had been clear.  Monday we were at Dr. Sheilds' office for the new patient day.  Jeff was playing with Jamison while I was with Cole when they did the brutal appointment.  The entire time he was fighting and screaming, "Mommy, please make them stop, she's poking my eye, please, please, please." She did his right eye first, all clear, no signs of RB, so I start thinking how awful I am for putting him through this for nothing.  Then she starts with the left eye.  After a few minutes I hear, "there's a lesion." He has one small tumor in his left eye.  That day she assures us she can get it with cryotherapy, freezing, and not have to do chemo.

On Wednesday we brought both boys in for their EUA's.  As she's looking at Cole's chart and for whatever reason the genetics clicked in her head and she tells us she wants to consult with Dr. Leahey about possibly doing chemo.

Needless to say, Wednesday was day 1 all over again.  The big differences, we were totally blindsided.  We knew somewhat what we were going into with Jamison.  We fully expected chemo, we knew he had cancer.  We didn't know 100% what to expect, but we knew it wasn't going to be good.  With Cole we had been reassured he would be fine, then we were told no chemo, and well, we were finally hit with, he has cancer and we're doing chemo.

The chemo is to ensure that he won't lose his eye, at least not due to this tumor.   But it also to greatly reduce his risk of pinealblastoma or trilateral retinoblastoma, where the cancer shows up in the pineal gland in the brain.  There would have been a 9.3% chance of this happening, so 1:10 kids would get this if not treated with chemo.  That was too much of a risk.  If that were to happen it would most likely be fatal.  It's also hopeful that it can help fight off any new tumors that may want to show up in his eyes.

Cole did his first round of chemo on Wednesday, 9/14 and Thursday, 9/15.  There are also some differences with his chemo.  He will be getting the less aggressive course of treatment.  The more aggressive is done in children with a D or E tumor, the less with those who have A, B or C.  Cole's is a B.  He will still get vinchristine, carboplatin and etoposide, but he only gets etoposide both days, where as Jamison got Carbo and Etoposide both days.  We are also going to try this without a port.  He fights the IV placement but calms down almost immediately depending on where they place the IV.  The second day they placed it in his had so he had no ability to use that hand due to his "no no".  That is something that put over it in hopes that the children won't pull their IV's out.  He was not a fan of that, but eventually got used to it.  He also will not be getting the neulasta shot because of the lesser chemo being used.  His numbers should not drop as much.  He is looking at 5 more rounds of chemo, once a month in Philly.  So, yes, we're back to traveling monthly to Philly.  We're pretty much back where we were 10 months ago.

Jeff and I are still in complete  shock.

Jamison did receive a stable report, meaning no new growths, he is still in remission.  His birthday is Saturday and we have decided to continue with having his birthday party.

I have to touch base with our social worker, make his first clinic appointment for labs, call and set up hearing tests for both boys, Jamison, just a recheck because the chemo can affect his hearing.  Cole to make sure his hearing is good, with Jeff's family history, we want to make sure that all of their other senses are working great since their eyes are compromised.

Cole will be fine, but the next 6 months are going to be difficult.  He will know what is going on.  A 3 year old's cries are so much different than a 1 year old's cries.  I am trying to help him understand that his eye is sick and we are giving him medicine to make that feel better.  However this medicine might make his tummy sick and will likely make his hair fall out.  Within the next couple weeks we're going to buzz his head, in hopes that the hair loss won't be a complete shock to him.   I know Cole and Jamison like to share everything, but I would have appreciated them not sharing this.

Thank you again for all of your support, prayers, good thoughts.

Amazing Retinoblastoma Kids

In June we had the privilege of meeting up with some other children who are battling Retinoblastoma at the Greenville Zoo.  All five of the children have Bilateral Retinoblastoma.  Three are treated in Philly, one in NY and one at St. Judes.  All are equally amazing and great little fighters.  

It's September 1st.

September has a whole new meaning to me now.  Perhaps Jamison was due to be born in September because of his cancer, more likely it was just chance.  September is National Childhood Cancer Awareness month.  It's not glamorized like other awareness months, you don't hear about it on tv, radio, I have yet to even see mention on a magazine.  However, it's an important month to me.  I'll be honest I hadn't heard about it until November 11, 2010.  We need to raise awareness about childhood cancers because they are so underfunded.  Wear gold for all of the wonderful babies out there who are battling cancer.  Each day they wake up with a smile on their face and ready to face the world, only to be shot down with chemo, radiation, surgery, or many other necessities to keep their faces smiling. 

Some of the photos through Jamison's battle.

 He went through this so we could keep this.  We love our boys so much.  They are such a joy even when they're being stubborn, frustrating and pushing limits. We still pray that Cole won't have to endure any of this.

Postponed

Thank you Hurricane Irene, you have postponed our Philly trip by two weeks.  That means I get to get physically ill with anxiety again.  Oh joy.  We were supposed to fly out on Sunday, Cole was up first with a 6:45 am appointment on Monday morning.  Today we got the confirmation that our flights were cancelled.  I expected it and I'm glad they did it today vs. us having to wait until Sunday morning, I just hate that it's hitting that area.  More so I hate that the boys appointments are going to be delayed two weeks.  I was on the phone for about two hours trying to change appointments, flights, car rental, request at the Ronald McDonald House.  I got everything accomplished except for rescheduling Jamison's MRI.  He has to be sedated and he can't eat or drink anything, the only appointment on that Tuesday that CHOP had was at 1:00 pm.  That doesn't work for a child like him.  I think he would literally tear my shirt off trying to nurse if I made him wait that long. :) I'm not working with their pediatrician's office trying to get an MRI scheduled locally, hopefully before we fly up.  We now fly on Sept. 11, bad day to fly.  It's also the first football Sunday, so that stinks!

The boys are doing well, fighting all of the time.  We're trying to get ready for Jamison's party which will be a little more of headache than planned due to us getting home right before it.  But we'll deal with it and have a great time.  We hope to see everyone there! :)