Some pictures

James

James and Alex have always been best friends. Since Alex has been sick he no longer has the energy to keep up with his big brother James. It's been really hard for both of them to try and find something fun that they can do together. This weekend we have had lots of surprises from friends and from special people who didn't reveal their name.
James has been having a hard time when Alex receives things from us, or from others in the mail. Today was his turn. He got a cool Jazz shirt in the mail from an anonymous sender. He was literally jumping up and down because it was his name on the envelope.
A BIG thank you to everyone who made our weekend so special!

Livy gets some big brother time

Livy was a bit fussy and Alex said he wanted to hold her. So I passed her over and she settled right down and smiled. She then looked like she was having a.serious conversation with Alex which ended in more smiles.

Time Ticks On

I am always reading things online that have to do with DIPG.  New clinical trials, what to expect and things from other DIPG moms. I am learning that no ones knows much about it.  There is no cure, but one girl was diagnosed seven years ago and still doing well.  She is the longest known survivor.  Although they didn't treat the disease any differently.  So some treatments work well for some kids and don't work well for other kids. Right now radiation is the best treatment.  It shrinks the tumor and gives you more time. In about 6 months they expect the tumor to grow and be unstoppable. Doctors give kids with DIPG anywhere from 3 months -12 months to survive. Alex was diagnosed in November. This is so UNEXCEPTABLE!  Out of the millions of dollars being spent on cancer research.  DIPG gets between 0-1% of it!  The treatment for it hasn't changed in like 30 years. I can't believe it! Why wouldn't they do more for the worst type of pediatric cancer? WHY?! I just don't get it.

That's enough ranting for today.  Alex is having a hard day and I guess it makes everything harder to deal with. He is sick to his stomach and has had a hard time walking. He gets dizzy being up and needs help with the simplest of tasks.  It worries me, this is suppose to be the "honeymoon" period. What does that mean for Alex? Time is against us and I feel like it is a constant battle.  I keep counting back to when he was diagnosed and think how much longer do we have?  How many more good days?  There's so much more he needs to see and do.  How are we ever going to show him everything in time? 

 We need a lot more time, I wish time could just stop for a while. But it won't.... no matter how much I wish it, it ticks on.

The past few weeks we have had lots of really good days and a few not so good. It really is a roller coaster of emotions. When Alex is doing well, everything in life seems so wonderful and when he is sick or hurting it feels as though everything is falling apart.
Alex has just discovered that he can order some really cool things on-line.  He ordered a plasma ball himself and enjoyed tracking the package, then of course recieving the package. He enjoyed it so much he has tried to find something little to order every day for the last few days. Here is a picture of Alex with his plasma ball, pretending to be an evil sorcerer.
The doctors have been slowly lowering the dosage of steroid and Alex is acting more like Alex again. I'm so glad, we have all really missed him.
Yesterday we had clinic and talked about some of Alex's new symptoms.  There is more paralysis on the right side of his face. When Alex smiles only the left side goes up and when he blinks his right eye is very slow to close or doesn't close at all. So this could be due to swelling because of the steroid being lowered or the tumor could be branching out and growing. They could do an MRI to see but unfortunately there wouldn't be any different they could do. We were reminded that all of this is to extend the quality of his life since there is no cure for this type of cancer. I can't tell you how that feels to hear.  My heart breaks everytime we are faced with the reality of this disease. I love all my children so much and the thought of Alex having to do this takes me to the absolute brink.
We are still praying for a miracle for Alex because that's what it will take to save his life. The doctors can't, so we are leaving it up to our Heavenly Father. Please continue to pray for him.

Sunny days

The last few days have been great! Spring is finally here!  Alex has had a little more energy and enjoys going outside again.  Today we went to the park, Alex flew his kite, walked around with his metal detector and played with his brother James and some friends. It was great! I'm hoping with all the walking and playing he will get some of his strength back.

Alex started two different types of chemo this week.  He was not very happy about having to take that yucky medicine again.  I find it hard trying to convince him that, it's okay and it's not that bad, just take it.  I can't bring myself to say those things to him when it comes to chemo.  I don't know that it will be alright and was very anxious about him taking these.  The chemo this time is a little more than twice as strong as last time and another chemo pill has been added. We were not sure how many of the side effects he would experience with taking these strong, toxic medications.  The first day he had to take 7 chemo pills! That night went fine and we didn't see any change.  The next morning he felt great and had lots of energy that he hasn't had in a long time.  It was a beautiful day and Alex wanted to be outside and he even rode his scooter a little bit!  It was such a relief!  He took his chemo that night and was fine til about 3 in the morning and was sick to his stomach.  He was able to go back to sleep for a bit and woke up happy. That's happened a couple more times of being sick to his stomach.  Today is the last night of chemo til next month.  His counts are expected to drop very low within the next couple weeks and should slowly recover and at that point will start another round.

Alex playing outside

Pictures from Alex's Birthday!