I cannot stop bragging about Cole

It's Friday and I am still amazed at how wonderfully Cole handled everything that he had to endure for his MRI on Tuesday.  The first thing was not eating.  His appointment wasn't until 10:15, we had to be at the hospital at 8:45 and he couldn't eat anything past 4:15, which meant he didn't eat anything after about 8 Monday night.  He couldn't drink past 8:15, so that was when he started trying to sneak snacks.  Fortunately I was able to get everything away from him before it entered his mouth.  His first meltdown occurred when we arrived at the hospital.  He thought he was going to get to go play at the Hem/Onc clinic.  They have a great playroom in there and he has enjoyed it very much every time we had to take Jamison to clinic.  Once he realized he wasn't going to get to play he was sad and started crying.  He didn't get happy again until the Child Life worker came in with some toys.  She brought him animals and he had a blast with them. Then she brought in her babydoll to show him how they were going to give him an IV, or a magic straw as they call it to children.  He enjoyed squirting the water through the straw and didn't want to give her the baby back.  So then she brought in another baby for him to play with and a movie to watch.  He was happy playing and watching tv that he didn't even ask for anything to eat or drink.

Next obstacle was his iv.  I was terrified of this as it has always taken at least two adults, preferably three, to hold Jamison down while he screams bloody murder and the third or fourth person accessed his port or placed his iv.  Cole only cried for a few seconds when they actually had the needle in his hand, other than that he was still playing.  I had my hands loosely on his legs but didn't need to hold him down at all.  He did not like the board they place on him nor the fact that he had a bandage on his hand.  He asked me to take it off about 100 times, but I told him if we took it off he would have to get a new one placed and that wouldn't be any fun.

Next they came in to wheel him away and sedate him.  He cried as the medicine went in and the doctor said that it does burn going in, but he counted to three and Cole was out.  I only have Jamison to compare this too and let me say I was shocked.  Jamison's MRI was a bit of a nightmare.  He had a cold, but we get his done in Philly so they gave him the special medicine that dries him up and proceeded very slowly with him.  It took about 10 minutes for Jamison to actually go under and stop fighting.  After about an hour and a half they finally brought him back to me and he slept for a bit longer. Then he was awake as fast as he fell asleep. All of the sudden his eyes popped open and he wanted to play.  He was really upset with the pulseox and didn't care about the iv.  Of course the pulseox was what had to stay on, but he had some cookies, drank some juice and was ready to get out of there.

Best news though is that his MRI is clear!  This is definitely what we hoped for and expected, but with cancer you learn to expect the unexpected.  I hate that we'll have to do this every 5 months until he's 5, but it needs to be done.

While Cole and I were at the hospital, Jamison hung out with his Great Uncle Johnny for a bit.  He was sad when I left, but then I learned that he was given pixie sticks, so I'm sure he cheered up in an instant. :)

Appointments are set

Cole's and Jamison's appointments are set for the most part.  We're still waiting to hear from Palmetto Health, our local hospital, about Cole's MRI.  I probably spent about 90 minutes on the phone this morning trying to arrange everything and of course change everything.  Jamison's birthday is Sept. 17, so we can't go after that or he won't have a free flight.  I really didn't  want to go on the 13th, and while it was an option, I just didn't want to do it that close to his birthday.  August 29, Cole will have his new patient appointment at 6:45am (yay!!).  The early appointment is a good thing.  Jamison's first appointment was at 10:00am and he wasn't seen until 3:00pm. Then Aug 30, Jamison will have his MRI and his appointment with the oncologists Nurse Practitioner because the oncologist won't be there that week.  Boo for that, but it is what works best for us.  Then Aug 31 Jamison will have his EUA, we won't know for certain if Cole will have one or not until that Monday. My assumption is he likely will have at least one, but it's all up to Dr. Shields.  I hate to put them through this and wish I didn't, but I know I'm doing what is best for them and trying to protect them.

This will make for an interesting trip as we have never taken Cole to Philly, we're not sure how he will be on the plane, nor how he will do playing the waiting games we play up there.  Hopefully we'll be able to get into the Ronald McDonald House and at least he will be able to play.  If not we'll just have to find some fun stuff to do.  Any suggestions for a 3 year old on an airplane?  Jamison usually sleeps, but who knows what Cole will want to do.

We're going to be waiting another 2 weeks for Jamison's glasses, apparently they were made wrong and now we're basically told, too bad, you just have to wait longer.

News about Cole we didn't want to hear.

Bilateral Retinoblastoma is largely genetic.  We were under the impression that Jamison's was sporadic but did genetic testing on Jeff and myself to find out if there was a family history.  In doing this we found out that Jeff has the mutation that Jamison has and he is a silent carrier of RB.  Once we learned this we needed to get Cole tested because Jeff had a 50% chance of passing it on.  We learned the results today and unfortunately Cole also has the mutation.

What does this mean for Cole...well, for now nothing.  Hopefully it will never develop into anything.  Likely he will be seeing Dr. Shields in Sept.  He has had two ophthalmologist appointments with Dr. Cheeseman, the doctor who diagnosed Jamison, and he has been cleared in both of those.  Eye cells don't finish developing until about the age of 5, so there is a chance he could be diagnosed with retinoblastoma until then.  In the long term he will run the same risks that Jamison runs for getting another form of cancer. So, it pretty much sucks.  It also means he and Jamison have a 50% chance of passing it on to their future children if they decide to have them.

Please pray for Cole that he never develops retinoblastoma and please pray for Jamison that his cancer won't return.

Today Jeff and I are just bummed, speechless, don't know what to say.  There's nothing really to say. We don't know if Jeff's mutation is sporadic, we can't find that out unfortunately since his mom passed away.  We do know that his dad tested negative and doesn't have the mutation.  So if it was inherited, then it would have been from his mother's side.

I guess we will really need to buy stock in sunscreen as we have already gone through 6 cans of it this summer and it's barely July.  It's one of the ways we know to do our best to protect them from sun cancer, we also ask that anyone who does smoke, please don't do so around our family.  They don't need to be near it.  I have turned into the crazy lady who yells at people for smoking in the non-smoking areas.

Some post surgery pictures

Hello, port, it's so nice to see you outside of Jamison's body!

Celebrating the 4th by wearing mommy's and daddy's shoes.

 The high was only 96, I guess they were a little chilly. 

Watermelon time!

 

 

See how yucky Jamison's bandage is? Too much blood.

Port has been removed!

Jamison's surgery went well on Friday.  It somehow managed to go on-time as well.  He and I got to the hospital at 6:30 am, Cole and Jeff stayed home, I would like to say and slept in, but Cole was awake before we left.  Jamison was taken back to the operating room at 8:30, surgery started at 8:35 and I was speaking with the doctor before 9.  The doctor took me back to recovery, so he was only away from me for about 35-40 minutes.  He had a bad iv, so I'm hoping he wasn't actually in any pain since they gave him iv pain mends, but when we were in recovery he was leaking a mixture of blood and fluid they were pushing in him.  My shirt ended up soaked before I could get the post-op person to take the iv out of him.

There have been a few extremely minor hiccups in the recovery, only that he is too active and won't rest.  He and his brother are pushing and shoving, they are at the lovely age where they play nicely for about 5 minutes and then one starts crawling on top of the other resulting in hitting and crying.  Jamison has bled a little more than normal, almost filling up his bandage.  His tegaderm is falling off, it's not supposed to come off until the 8th.  I called the on-call doctor and he said we could change it or come to the hospital to have it changed.  We're just hoping it will stay on through the night so I can call the pediatrician and see if he can change it tomorrow.  I'm nervous about keeping it sterile and there's no way we can do that here.  Jamison requires two to three people to hold him down while someone does what they need to do, only when messing with his eyes or his port site.

We had a lazy 4th of July weekend, just hung out and played at home.  We couldn't really take Jamison to any of the festivals around because we know they have huge bouncy houses and he would want to go play.  So we just stuck to the house, watch a massive firework show that someone a few streets over was doing and chatted with our next door neighbors.

Hopefully all will be quiet on our end until Sept.  I'll try to remember to post, we will see.