Summer Fun!

We had so much fun with our friends from New Zealand while they were here. 

Picnic at the Falls

We enjoyed a nice picnic lunch at Snoqualmie Falls this weekend.  The kids had fun exploring and taking in the beautiful scenery while Dad enjoyed the line up of fancy cars.

Ports

We had an eventful and somewhat tramatic access of his port this week.  We had a nurse in a different department that must not have been used to accessing pediatric ports that had a really hard time accessing Max's line. She had to deaccess and try again 3 times.  They couldn't get blood out to get labs and were having a hard time getting the saline in, I was so focused on trying to keep Max happy and distracted that I wasn't realizing what supplies were being used. They didn't prep his skin with the normal protectant that they use and they used the wrong type of tegaderm which caused the skin on his chest to get ripped off with all the unsuccessful tries.  They tried for almost an hour to get it fixed and I didn't realize how tramatic it was to Max until we were all done,   Since then he has complained of his port hurting and having "owies" in his chest and neck.  I had to take him back in to the hospital to get x-rays the next day to rule out an issue with the placement of his port and to keep an eye on an infection getting started in the port.  He also was running a low grade fever and having some stomach issues.  We know that you don't mess around with those things and are so glad to get confirmation that everything with his port seem to be okay.  The fever and stomach problems seem to have been an unrelated issue with some new medication that he is taking.

Just a tramatic experience for Max.  We had another access done yesterday and he acted like a wounded animal, wouldn't let anyone touch him, and was so cautious of the nurse trying to do anything. I couldn't help but laugh at him as he kept reminding the nurse to get her "glubs" (gloves) on  and to make sure to flush with "hepin" (heparin).  I am so bummed that he had to endure that, he has been so good and now it seems we have backtracked a little and will need some more time to gain some more trust.

 

His port has been so nice to have, usually it is so easy to access and deaccess and with all the labs and infusions he gets it shaves tons of time off our schedule. It lies beneath the skin in his chest and is hardly noticeable.  Little Molly is just fascinated with ports and doesn't understand why her twin brother and grandma have a port and she doesn't. We are trying to convince her that a port is not a normal thing to have.   =)

9 month CT Scan

I love receiving good news these days!  God continues to bless us with another report of a cancer free scan.

Max is such a trooper.  He was having a great morning even after having to fast and not drink anything for 12 hours he was still in a good mood.  We arrived before 7am and Max drank 8oz of contrast liquid without even a complaint, it is such a nasty thing and he was able to keep it down with only a few gags, so I asked the anesthesiologist if we could try the test without the use of anesthesia this time.  We have run into many issues with Max not reacting well to the anesthesia and they agreed that we could give it a try and if it didn't work they would have the team ready to knock him out.  I couldn't have been more proud of him today.  He did everything that was asked of him and laid completely still throughout the whole scan.  They even had to inject him with another contrast dye during the middle of the test.  The whole radiology team was in awe of him and said they have never had a 2 year old able to do what Max did.  They rewarded him with  a big red stuffed warthog, which he was really excited to give to Gus the puppy.

In Memory of William Barton

William Barton passed away unexpectedly on July 31st, 2011 after a sudden stroke while camping, fishing and hiking with his family in the hills of Idaho. A memorial service was held on August 9th.  We will all miss him greatly.  Here is a brief slideshow of his life:

Remission?

So many keep asking if Max is in remission.  The answers we are getting from the doctors is that Max is still considered a "partial remission".  While we have had 2 clear CT scans, he appears to be cancer-free, but his body/immune system seems to still be fighting something in his body.  So we are still trying to get OMS under control and full remission requires him to be off all of his medication.  After much discussion with many different doctors and specialists we have come up with a plan to decrease his medication slowly over the next 7 months and continue to monitor him closely for new symptoms, as new symptoms crop up we may need to extend that time, but God willing we will get all our prayer warriors on board and who knows we could surprise those doctors again and get him weaned off sooner.   He will continue to get his IVIG infusions every other month until we are off of our clinical trial (hopefully in 6-9 months) and than we will have more flexibility to give him more infusions depending on exposures to germs around us and as we see flair ups of symptoms.