My mind feels so cloudy today.  I cannot stop thinking of Ava and her parents and brother.  I cannot stop thinking about how they are feeling today when they woke up this morning, or if they even slept last night.  I think of Jack and how lucky we are that he is here and doing so well and in a way I feel guilty.  I do not feel guilty that he is alive and I do not feel guilty that he is here and healthy.  I feel guilty because Ava is gone and for some reason Neuroblastoma took her life and not Jacks.  Survivors guilt.  It sucks.  I am sure it is nowhere in comparison to what Ava’s family is feeling, but it sucks.  Your heart hurts for their family.  Your heart hurts for Ava and that she had to go through so much in her short life that was just pure hell.  My heart hurts for her doctors that tried so hard to do everything they could to cure her of this awful disease and it didn’t work because I know they are at home tonight thinking of her.  Her mom said in her post “Ava did not lose to cancer” and I can imagine that was something that she decided a long time ago.  Ava was a fighter.  Through the posts that her family wrote, you could see that this little girl had a heart of gold and was so determined.  Her body just didn’t agree.  Why Ava?  Why Ben? Why Jake? Why Ronan?  Like Jack said, “Why do all my friends from the hospital go to heaven?” How do you answer that?  You can’t.  There is not a reason why the treatment works for some and not others.  It is not because “Jack is supposed to be someone”…so does that mean these other beautiful kids weren’t?  I don’t think so.  ”Everything happens for a reason.”  Tell that to the parents of these 4 kids.  I don’t believe that either.  ”God only gives you what you can handle” So does that mean that I would go in a looney bin if Jack didn’t make it through treatment and these parents won’t?  I don’t think so.  I probably would go in to a looney bin, no doubt, but that doesn’t mean that I am given any less heartache because of it.  I can guarantee you that these parents, among so many other, feel like like they could check in the looney bin at times too and often wonder, “Why did he do well and my child didn’t?”  I know that because I have felt the effects of it.  Some parents that I thought I would always have a friendship with have shunned me because they lost their child.  I understand that in a way but it also hurts…survivor guilt.

It is times like these…times when we have to accept the fact that yet another innocent child has died because of cancer that makes you wonder all of this and it is ok to actually say it out loud.  I think of all of these things often but I usually chose to keep them to myself.  I think of the other children we have met and that are doing great…McKenna, Cameron, Olivia, Braden…and so many others.  I think of Alex who has hit a few bumps in the road but him and his family continue to fight so hard and keep that faith that he will win.  I think of those who will be diagnosed this year and what new treatments will be available to them that weren’t available to Jack and if that will make a difference in the future.  Would timing have changed the outcome of the kids who were robbed of their childhoood?  How is that fair?  It simply isn’t.  It isn’t fair that any of these children were diagnosed with cancer.  It isn’t fair for any child to be diagnosed with any sort of disease….period.  I think of  this and want to do more.  I know I go on and invite you all to benefits and fundraisers over and over again.  I constantly ask for help (which I never would have done in my past life…past as in “before cancer”)  I ask you all because you all are the ones who can save these kids.  The doctors that we have come in contact with are in this profession because they want to save lives.  They do not want to sit back and watch children die.  The problem is that they have no funding, so who do the depend on….us.

So I will continue to ask for your help and continue to invite you to fundraisers because I need you.  We as a family need you.  The children who have been diagnosed need you and those who will be diagnosed in the future need you.  If you can, at any time, help…please do.  I am not a person who will accept the word “No” so you bet your ass I will keep asking until I get a “Yes”

I know we haven’t updated in awhile and while I want to share some things that have been going on with Jack and our family, but I want to dedicate this post just to Ava.

Ava passed away last night after a very courageous battle with Neuroblastoma.  She fought for the past 3.5 years against this awful disease and never gave up.  Her parents were with her through all of the ups and downs and never lost faith in where they were at.  When Jack was first diagnosed, Ava’s dad Mike, was the first person that we talked to who knew what we were about go through.   He talked to Zac for a long time and gave him the rundown of treatment, doctors, chemos, and obstacles that could happen.  Zac and Mike went to school together and to have them reconnect over their children both being diagnosed with the same cancer is just not right.

Jack was only able to meet Ava one time at clinic since Ava was in NY for most of her treatment while Jack was at PCH….Ava, Jack, and Ben all met that day.  I remember it clearly because Ava was so shy and spent a lot time hugging her dad’s leg.  She had on a little princess dress and when I complimented her on it, she say “thank you” in her little voice and gave a little smile.  It is simply not fair that Ava and Ben are both not here anymore.

Our hearts break for Ava and her family as they have gone through so much and to imagine what they are feeling today is almost unbearable.  Ava’s mom, Chrisie, is always so positive in her posts on Ava’s CaringBridge page and always holds her head high.  I have a lot of respect for her and admire her strength.  I hope you all visit the page and leave some words for Ava’s family as their lives have just been turned upside down.  I would imagine that even the support of strangers would be helpful at this time.

Ava will be missed dearly by so many people…

http://www.caringbridge.org/visit/avaholder

Zac, Jack, and I headed off to PCH on Friday to see Dr Eshun.  When we got there we saw so many of our old friends from the clinic and it’s always nice to catch up.  We sat with Sharon for about 45 minutes and it was so nice just to sit and talk with her with no pokes or reports to go over.  All of the nurses there were commenting on Jack and his hair and how old he looks.  One of them said, “I didn’t even recognize him!  He just looked like some random older boy walking around the clinic!  It’s great!”

Eshun came in and showed us the reports that stated that Jack’s scans show no evidence of disease (NED).  He also said that we should have had an echo, EKG, and lung function test as part of the protocal so we will be doing that in the next couple of weeks.  He also informed us that we will not be going back for scans for another 6 months so that puts us back at PCH right before Thanksgiving.  I find that to be a great time to go!!  We will be doing random unrine tests though more for our own piece of mind than anything else.  In talking about the protocol, we found out that Jack will only need scans for 2 more years. That’s 4 more scans total.  We thought it was for 5 years, but apparently we were wrong!  I am not sure if I am happy about that or not.  It is great that he won’t have to go under and go through the scan process because that does affect the body, but it is nice having the scans so we know there is nothing going on in his body.  After his 2 year post treatment scan we will be turned over to another set of doctors at the survivors clicic.  They will monitor him every 6 months to make sure he isn’t having any late effects from his treatment.  Of course I asked him if he was sad or happy he wouldn’t have to put up with my phonecalls and emails much longer and he just laughed and said that there are actually some other parents worse than me…which I find hard to believe!

Anyway, all is good here.  Thank you for all the support for Jack.  It means so much to us.  Thank you for all the birthday wishes sent my way as well!  I did get the best gift ever so I am happy.  I happen to be a bit sick right now and the timing couldn’t be more awful, but that’s ok.  I know that Jack is cancer free and starting Kindergarten in a couple of months, Braden is healthy as a horse, and my husband continues to be my rock and my one and only (he will understand that one!).  I am very thankful, very lucky, very blessed.

At 8:57 PM, the phone rang.  After we had already accepted the fact that we wouldn’t hear from Dr Eshun until we saw him tomorrow morning at 10 for Jack’s appointment.  The phone rang and I ran into the kitchen and then closed myself in the room downstairs to pick up the phone.

Eshun: Laurie

Me: Yes

Eshun: I have been in a conference all day and just walked in my front door.  I have not yet been able to actually see the scans myself but I am telling you that the report that there is No Evidence of Disease.  NED.

Me: Are you sure?

Eshun: Yes, that’s what it says.  Of course you know I want to go over it with a fine tooth comb in the morning but I know how you are and I wanted to let you know.

Me: You know I am totally neurotic.

Eshun: Well….yes.  And you need to sleep.  So sleep tonight.  All looks good.

After a minor breakdown with Zac, we are celebrating the good news tonight.  We will see Dr Eshun tomorrow morning at 10 and know more details, but all looks good now!  Thank God!

More to come tomorrow…

Well it’s after 9:00 PM so obviously we won’t be hearing from Dr Eshun tonight….ughh.

Jack did really well today though so that’s a plus!  We arrived at PCH on time and all went really smooth.  We were really happy to see our favorite nucular med nurse, Angela, there and then to know that she would be taking care of Jack while he was under was an extra bonus!  We got to see the Amazing Mary and the rest of the nucular med team and that’s something we actually really enjoy.  The people that are down in this department are really top notch.  We really love them all and consider them part of our family so it is always nice to see them.  Dr Maze arrived and after chatting with him for a bit we got the show on the road.  Jack did well with the mask and went right to sleep.  Almost exactly 1 1/2 hours later, Dr Maze came out and said, “Well do you plan on coming back and seeing him or just sitting in this waiting room all day.”  Typical Dr Maze…love him.  He said Jack did well despite his cold and that was proven when he woke up within 5 minutes of my Dad and I being back there.  Usually he snoozes for a bit, but not this time!  He was up very fast, had his purple popsicle, apple juice, and grabbed his gold fish for the road and we were off.  By the time we got home, he was running around like a crazy man and ate a wonderful dinner so it seems like he is getting back to his old self already.

We are sitting and waiting now for Dr Eshun to call to give us final results but we feel pretty good about it this time.  I am nervous as all get out, but I feel good.

Tomorrow my Dad and I are taking Jack to see a new endocrinologist.  I didn’t get the best “vibe” from his last doctor so we decided to make a change.  We will meet the new doc tomorrow and see what he thinks about Jack’s thyroid and were we need to go from here.  Hopefully we will hear from Eshun tomorrow but we may not until we see him Friday morning.  We will keep you in the loop as we get the news.

I am attaching some pics from the last couple of days…some are of Jack falling asleep at scans so I just wanted to give you the heads up about that.  He is always safe with Dr Maze and that is why we feel comfortable showing pics of him being put under.

I also want to take a second to say thank you to all of you….old friends, new friends, some we have never met for all of your encouraging words of the last week.  I have recieved so many wonderful texts, emails, Facebook posts, Twitter messages…it is all just so comforting.  Thank you from the bottom of my heart…

Day 1…CT Scan…

Day 2…reading before Dr Maze arrives…

and here he is…cracking jokes as usual!