Tuesday, June 3, 2014

The Rollercoaster Never Stops: Suffering Through Shit With A Smile

I really and truly don't even know where to begin. See, this is where blogging on a more regular basis truly comes in handy. So much has been going on since I made an appearance here that I don't even know where to start. I'm buried in updates. And they are by no means "fluff" so I feel the need to document them. If I repeat myself, it's been at least a month so I'm sure you will get over it. I guess I will just dive right in and hope I don't drown.

The day before Spencer's last clinic appointment he had a follow up at the ophthalmologist. The last time he had been there they noticed his optic nerves were swollen but that can be common in kids like Spencer. They just wanted to take another peek and see if things looks the same. They didn't. The swelling had gotten worse over just six weeks. Was pretty quick to see a change. FFFFFF! His ophthalmologist recommended that he see a neurologist and get a spinal tap to check for any increased cranial pressure. So of course I'm freaking out. And on top of this optic nerve business, they suggested that Spencer have surgery on his lacrimal ducts (a.k.a. tear ducts). They were pretty blocked up so his eyes were always goopy. Wasn't particularly necessary or anything life-threatening but they thought it would be beneficial to do the procedure, even though it's only 85% effective or sometimes needs to be repeated. I cried the whole way home from the appointment because this kid never gets a break and he's not even three years old yet. The whole mess meant he had to go under anesthesia again and he had to get poked-n-prodded again and he would have to get morphine again and it's JUST. NOT. FAIR.

So the next day we go to his clinic appointment and I get his oncology team up to speed with what happened the day before. After a visit from an in-house neurologist, everyone was on the same page and agreed that the spinal tap would be a good idea even though he didn't show any other signs of increased cranial pressure and his bloodwork didn't show any signs of the cancer returning. The problem was this: if there was a blockage anywhere that was causing the swelling of the optic nerves, the spinal tap could be very dangerous. This meant he had to get a CAT scan in advance. They kept reassuring me that nothing was emergent but they still wanted to get the ball rolling.

As for the clinic appointment, everything looked great. Appointments are still every two months, which is far better than EVERY month. Endocrinologist did adjust his thyroid medication a little but it was nothing drastic. He had just outgrown his baby dose. His Hypothyroidism is truly the least of my worries. Onward.

Even though I kept being reassured about how great he looked and how they didn't think anything serious was going on, it was still a miserable time for us. Even thinking that there was a remote possibility that the leukemia was back kept me up at night. And his communication delays mean he can't tell us if his head hurts or his vision is spotty. He's just been through too much for such a little boy. I'm so angry! Not even sure who or what to be angry at so it never goes away. So one week ago with the crack of dawn, I took my smiling, happy, goofy, mohawked little dude downtown to get a CAT scan and it was probably the easiest thing he's ever had to go through. He was a champ and giggled the entire time. It took me longer to park at the hospital than the actual CAT scan took. In and out. Afterwards, we went for pancakes, just us. I think it was more to lift my spirits but we had a great time. And later that night we got great news: there were no blockages and it was safe to do the tap.

So that brings us to last Thursday, better known as Surgery Day. Todd took the day off to be there. It always helps to have someone else around to help out. We were at the hospital at 6 AM and by 7:15, they had carried him back to surgery. Seeing him in the little surgical gown with tigers on it always bums me out no matter how adorable he looks. He's just worn that damn thing too many times. After getting addicted to an app called QuizUp in the waiting room, the docs came out, the surgery went well and he was a champ, per usual. His eyes should be nice and clear within a week. The ophthalmologist wants to see him in a month just because of all the nonsence going on but the stents in his ducts will stay in for four months. Easy breezy.

He took a better look at Spencer's optic nerves once he was under anesthesia and they looked even more swollen. Now that he had evaluated them three times, he had a baseline to compare things to, and the swelling was increasing. Because of this they went forward with the spinal tap and they did measure an increase in cranial pressure. Normal is from 10-20 and his was 23, so really it was sort of borderline and didn't really point them in any sort of direction. When they removed some of the cerebrospinal fluid (CSF) during the tap it did bring the pressure into normal range. It's hard to explain this whole thing to people because according to the team of doctors, there are tons of reasons why his optic nerves could be swollen and tons of reasons why the cranial pressure could increase or it could end up being nothing other than it's just part of who he is. In that case they would just have to keep a close eye on it probably for the rest of his life to make sure it doesn't affect his vision. I almost wanted to be something because if it's something, then they can fix it. I don't like thinking that his optic nerves are just going to be swollen for the rest of his life. He's got enough going on to freak me out with.

So a few days later we got what was probably the most important call. No leukemia cells were present in the cerebrospinal fluid. WHEW! The big dog had been ruled out. Now we just need to figure out what's what, rule out some other things...and that means more test. We are in the process right now of scheduling an MRI of his brain and orbits, and an MRV, which looks at the veins surrounding the brain. He will have to be sedated for this or possibly go under anesthesia again. Hoping they can avoid the latter. They will also do another spinal tap to see if the cranial pressure has increased since his last tap. This will be happening either at the end of this week or beginning of next week. Never a dull moment over here. So as of now we are still in limbo but he has great doctors looking out for him. Everyone is working together to find an answer.

So that's all of the medical nonsense. Can you feel my anxiety? It's like humidity in the air.

This Thursday we have the big meeting with all of the evaluators regarding Spencer going to city preschool. PT, ST, OT, school psychologists, teachers, his EI team, his Help Me Grow coordinator... They have all is evaluated him in one way or another and will report their findings. I feel like it will resemble going in front of a firing squad. A whole group of people telling me where my son is struggling. Where his biggest delays are. What he should be doing that he's not. I've developed a much thicker skin over the past 2 1/2 years but I'm not sure my heart can take too many more hits. It makes me feel like I'm failing as a parent. I know they all want what's best for him but that doesn't make it any easier to hear. And as a child with special needs, he HAS to be delayed in certain areas/meet certain criteria to even qualify for the program. But it still kills me that I can't just sign him up for any old preschool program like other parents do without him being picked apart like a chicken wing. I've heard this is an awesome program and people with typical kids want their children to go there. Everyone is treated the same. I want him to go to preschool with these kids in the school district because in the long run, these are the kids he's going to grow up with. It just bums me out, but I'll never let him know it. He's the hardest working man I know. Hands down.

Now that I've put all of my stress on the page, what else is there to say? I survived my finals and have moved onto summer semester. Taking a few classes to raise my GPA and keep me in school mode. I will be CPR certified in a few weeks. My workout program is still getting results (down 8 pounds and 11 1/4 inches) and I've started training for a 5K again. Hoping to do one in the Fall just to prove to myself that I can. Saw Lady Gaga for the 3rd time with my niece (who just graduated high school...man, I'm getting OLD). Had a Memorial Day cookout with some pals. Always kicking it with Sully...who is just as awesome as ever and waaaaay too smart. I love watching his mind work and he has a huge heart. As I said before, I can't wait to have some summer adventures with him (and Spence!) because last summer was just too chaotic. So that's that.

I'm really hoping to stay on track with blogging. It's a way for me to talk things out (which reminds me...I did this post using Talk-To-Text so ignore any weir spelling, grammar, or word choices). I'm at least going to try to check in once a week so maybe if doesn't sound like all he have going over here are major traumas and drama. So thanks for sticking around. I will definitely be back after we get results from the MRI the other test to keep Spencer spans up to date.

Enjoy your day.

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