Starting to notice some side effects from treatment

I definitely think the motto for Radiation should be "No Pain, No Gain".

Connor is starting to experience some side effects related to radiation. We are finishing our second week of treatment (with 4 more to go).

Some of the effects we have noticed in the last few days:

Fatigue: He has had less energy the last two days. He wants to sleep for at least 2 hours following treatment.

Low Blood Count: He gets his blood drawn every Monday for Chemo, and we were advised this was already low on Monday.

Sore Throat: He is receiving radiation to the spine so his throat, stomach etc. become exit points for the radiation. The doctor gave us a special rinse today which should provide some relief.

Loss of Appetite, Heightened sense of Smell, Metallic Taste: Eating continues to be a struggle. He is losing interest in some of his favorites. We are trying smaller meals (more often). We will be working with a nutricionist to help with these issues. As many of you know Connor has ALWAYS been a great eater, so this is new territory for us.

Muscle/Joint, Arm, Knee, Leg, and Head Pain: Most likely this can be attributed to the Chemo drug Vincristine that he started on Monday (Since it causes deep tissue and joint pain). But some of the discomfort can be attributed to the positioning in radiation as well.

We take it day by day. We try to stay educated on what we can expect, and be mentally prepared for what we can't control.

It was bit of a struggle to get Connor to go to radiation today, and I'm sure it won't be our last challenging day. Each time I consider something to be the "Worst", or "Most Challenging thing so far", they fade away, only to be replaced by the next event.

So we do our best, get creative and try something new.

That pirate has been visiting an awful lot Connor is up to $9.00 in gold coins !!!

Here's a photo of Connor's rockin tattoos. The Nurses get so excited to see his "daily" tattoo.



Today he added a Tikki Mask.







Some of the things we are looking forward to this weekend:
Halloween of course (stay tuned for photos of the shadow Ninja).

Aunt Tammy visiting for a few days, she always induces those great deep belly laughs.

Connor getting his port de-accessed so he can use up all the warm water in the shower :)

Breakthrough

We finally had a pleasant post Anaesthesia experience yesterday. Connor woke up gently, just like a regular morning wake up (thank goodness!). His new Anaesthesia is called Precedex.

We'll keep our finger's crossed that today delivers the same results.

Connor and I returned his Library books, and snagged a few more (he'd leave with 100 books if he could). He selected several from the Natural Science section yesterday. Rocks and Minerals, Dinosaurs, Big Cats and a few random fiction books.

We worked on some fine motor activities yesterday. Sallie sent him a Scratch Magic Kit. It's an awesome activity for fine motor skills.

I also wanted to thank everyone for the hats they have been sending. We haven't really noticed any major side effects, the Nausea Medicine(Zophran) is keeping his nausea at bay. His appetite has been a little suppressed, so we are offering his lots of "options".

We had a Monkey update from Miss Horn. They are taking very good care of him. The only places he hasn't gone are to recess and to lunch. Miss Horn said he waits in the Window sill at Recess so he can watch the class outside, and we waits in the sill at lunch with a banana. It sounds like his highlight was Music class where he played the tambourine.

(Did you find Sunshine in the radiation room the other day? You might need to expand the photo to see her).

I've also added a map to the blog, so we can see where all the Visitor's are from.

The best part of the day yesterday:

Connor: Going to the library

Mom & Dad: Having a calm wake-up

Strap on your body armour

We floated to the Radiation office yesterday. We had a huge deluge of rain yesterday morning.

Connor added a new tattoo to his collection (a flaming eyeball).

He was a champ getting his access tube placed, that kid amazes me.

Monday's take a little longer in the Radiation office. They do realignments and additional tests.

Yesterday's wake up from Anesthesia was quite alarming. In Radiation there are four Anaesthesiologists. They work together as a team to "personalize" your child's Anesthesia experience. Connor has generally been experiencing some emergence delirium post anaesthesia, but yesterday was out of control. Kicking, hitting, Screaming, trying to pull down the curtain, etc. After talking to a senior member of the team they are going to make some modifications to his Anesthesia combination. I guess we can return our body armour.

Many people have asked why Connor has to have Anaesthesia every day. Believe me, this was VERY alarming to me too. Due to placement of his tumor (Posterior), Connor must lay face down in a face mask for up to 15 minutes. There is a large amount of weight being placed on his face, and shoulders. In order for the radiation to be effective, there must be no movement during the treatment. So a combination of it being a completely uncomfortable position, and something that requires a child to be completely still leaves most children under the age of 10 requiring daily anaesthesia.

After our wake up battle we headed to lunch (at that point our child's personality had resumed his body). Connor enjoyed walking around the Children's Garden with his walker, they have it decorated for fall.

Next we headed up to Children's Oncology, for a Consultation about Chemo, and the nurse administered Connor's first dose of Chemo (Vincristine). That was a snap. The doctor said he really shouldn't experience many side effects from the Vincristine, maybe some temporary tingling in his hands or feet. His white blood counts we a little low (most likely from Radiation), so we were also advised to keep him out of groups. I have my bubble on order lol ......

We also met with Casey from the Children's Cancer Association. They do great things to Support children and families effected by Cancer. They offer a Chemo Pals program where the children are matched with a mentor who will spend time with your child in the clinic, hospital or even at home playing games, reading, doing art or whatever interests your child has. They also offer a caring cabin for families to stay at on the coast, for a little R&R.

We were at the hospital for about 7 hours, so all in all it was a long day at the Hospital. Our big discovery Valet Parking!

A funny thing Connor said yesterday: These are great "Chickaladas" !- Translation: These are great Chicken Enchiladas!

The best thing for Connor yesterday: Acquiring 2 Star Wars stickers to add to his walker !!