The long overdue post..

I've started and stopped this post several times, I know it's well overdue. I assure everyone we've just been enjoying our Summer to the fullest extent possible.

Connor is back to eating a little better, his foods of choice this round: Soft Serve Ice Cream, Pizza (only if he makes it himself), and chips and salsa. It's like international foods around here.

He's had a hard time keeping his electrolytes balanced this round. It's been a busy cycle for us.

Monday 6/21: Overnight Chemo Stay

Monday 6/28: Vincristine administered day trip. The doctor advised us his Sodium & Potassium levels were low , and advised us we would need to come in again on Friday to re-check labs.

Friday 7/2: Sodium & Potassium fine. Phospohorus low (added daily Phos med).

Monday 7/5: Vincristine administered day trip. Low Magnesium, and platelets. Connor admitted until 10:30 PM for Magnesium bolus and platelet transfusion.

Wednesday 7/7: Blood Draw : Magnesium Supplement doubled.

The Doctor's told us that these changes are common at this point in the treatment schedule. The chemo drug he takes this round (Cisplatain) starts to effect the kidneys (they have advised us this is temporary), however Greg and I are doing research and looking into meeting with another brain tumor research team to compare information. If there is anything we can do to limit these side effects, while still maintaining the integrity of the treatment outcome it's imperative we do that.

Connor is still doing really well. He just does his thing, takes his meds, and does what they ask him. We've been going to the movies a lot and he's really been enjoying that. His blood counts went up the first week post chemo, and were at the highest point since we've started (2,200). Even though his platelets were low, his ANC just started to dip below 600 this round.

We had a very casual 4th of July (sending up some money in smoke and flames in the back yard). Connor had to really push himself to stay awake until it got dark. But as soon as he was outside he was energized. This year he was so excited about fireworks. He's never been really fond of the noise and action, but this year he even had a rating system for each one 1 out of 5.

His favorites:

For fountains: The Unicorn (still the longest lasting show that we can find for the money), and a new favorite "Zombies".

For some crackling fun: Magic Whips (which of course my husband must string together so that they become the "Magic Jumprope").

In his down time Connor is a reading fool. He was super excited to get his first Library Prize (A "PICK YOUR OWN BRAND NEW BOOK" !!! WHAT AN AWESOME PRIZE !)... in the delay of my writing this post he also received his second prize (a library pencil and notepad!). The next prize is a pick from the "Mystery Chest".

Connor asked, "Hey mom what do you think is in that chest?", "Not sure". I said. "Well I guess it wouldn't be much of a "Mystery" if I knew huh?", he said. .. Me chuckling to myself "Wow it's amazing how much you sound like your father".

There was a last minute cancellation for a stay at the CCA caring cabin which we were able to secure (unfortunately we were worried we would miss out on our stay in August, because it coinsided with a hospital stay). We were very thankful for the time away. It was just what we needed to relax and re-energize.

More information about the CCA Alexandra Ellis caring cabin can be found here: http://www.childrenscancerassociation.org/programs/caring-cabin

For photo's from our stay click here.

It's absolutey breath-taking. There is so much to do: a playroom, media room, private lake & beach with boats, and stunning views from the deck.

We were so very lucky to be able to take our dear friend Nikki with us. She helped make our time there extra special.

We spent the first 2 days enjoying the house, and on the third day we ventured out to tour the Tillamook cheese factory (such fun as always!).

The home is inspiring, as you feel surrounded in love by all the families who have visited before you, and you try and leave behind some hope for the ones that will follow.

We were finally able to get Connor's electrolytes back into the normal range (7/19/10), just in time for taking him to the waterpark for his birthday on Friday (7/23/10). Can't believe he's going to be 7. He told the doctor he's not ticklish under his chin anymore, "Because he's growing up and he's a man now" (scared of that).

After a consultation, We will be starting Connor's next chemotherapy round at Doernbecher Children's Hospital. It will be an exciting change for us. Some of the things they offer that we like: a Neuro-Oncologist assigned to all brain tumor patients, a separate in-patient hospital space just for Oncology patients, Connor's favorite: A prize for a poke program.

Connor has been into the planets lately. I know it's probably not surprising that, Greg (I mean Connor) being a Star Wars geek (I mean fan) would lead to such a fascination with the Solar System.

He made a cool school project of the planets which he embellished with glow in the dark stars and a glow in the dark asteroid belt.

We've also added glow in the dark planets and stars to his ceiling. I think he's finally checked out all of the Solar System books at the library, and we are moving onto NASA now.

The best part of being 6:

According to Connor: Learning new things

According to Mommy: The smiles, the jokes, seeing the enjoyment in my Son's face as he is learning through books. How he shows an interest in all things around him and wants to know more.

I hope everyone is enjoying their Summer. I hope to update after we return home from Washington this weekend.