Day +40

1 day of radiation done and 19 more to go!  We had to wake up Jack at 5 this morning and he was not very thrilled about it.  He was a bit confused about why we were taking a ride when it was still dark out.  I told him he had to take a little nap and then we would come home and he seemed to be ok with that.  Zac was able to take off the day so we both drove down while Nikki stayed home with Braden (again…thank God she is here with us right now!)

We got there for his 6:30 appointment and Dr Maze took him back at 6:45 to put him to sleep.  By 7:10, they came and got us and all was done for the day.  Jack was still sleeping but they said it went great and he had a total of 4 1/2 minutes of total radiation being done.  He woke up about 15 minutes later, sat up, ate 2 Popsicles and gave Dr Maze and the nurse his famous thumbs up and a wink and off we went.  It went well and hopefully they will all go this way.

Jack was able to take a nap today so hopefully his sleep schedule won’t be too affected by these crazy hours.  Nikki and I took out Braden while Zac and Jack slept and got some things to make a pumpkin cake with Jack…we will post pics later!  We will be back at radiation tomorrow morning at 6:30 again and then off to clinic at PCH to check his levels. 

More to come tomorrow….

Day +39

Well we haven’t written in 5 days and we have just been so busy and sometimes just busy doing nothing. Does that even make sense???

Nikki and Shawn had a safe drive from Idaho and arrived late Saturday night. Zac was at a golf tournament for work so he wasn’t here when they arrived. Jack was so very excited for them to get here. We went out to see them as they pulled up and our new neighbors across the street were outside decorating for Halloween so we were able to meet them. They are so very sweet and have two young boys. They ended up putting up lights on our house for Halloween and we thought that was so sweet. Jack loves having the lights.

Sunday we all got up nice and early and Jack, Zac, and Shawn took a ride in the neighbors golf cart to Starbucks to get us all coffee (it’s right across the street and yes they went through the drive thru) and Jack thought that was so much fun. After unloading Nikki and Shawny, Shawn had to hurry off to the airport so he could get back to work.

Zac had to go back to back to Tucson for work Monday and we tried to get things accomplished around the house. We were able to get out and Jack got to go to the park for the first time in so long. He was so happy being outside. I was also able to connect with a family that I used to nanny for years ago. They were such a huge part of my life and I just have always loved all of them. I didn’t have their number and I was honestly scared to tell them about Jack because it has been a few years since I have seen them and they are like family to me. It is hard to talk about Jack with people that you are close to because it always makes it even more real. I was able to tell them everything and they automatically said that they were stopping over today even if they had to stand outside just to see me. I thought that was so sweet of them. You really realize when you go through something like this who you can count on and Melanie and Barry are 2 of those people. They stopped over tonight and were able to meet the boys and they loved them. For those of you who know Jack, he doesn’t warm up to everyone and he totally did with them. He tried to make Melanie play the Wii and Braden was all smiles and flirty with her as well. I just can’t tell you how happy I was to see them tonight….thank you so much for stopping over to see us!!

Zac was able to come home tonight and he will be taking tomorrow off to go to Jacks’s first radiation session tomorrow morning. We have to leave around 5:30 am so that should be interesting. Please pray for Jack that he get through this with as little side effects as possible. He is our fighter and he will do this with such courage as he has with everything else.

I heard this the other day and I think this is how we have been able to get though this journey….”we all have problems but we also all have triumphs. If we focus on on the triumphs and the positive, we can get through our lows that much better.”. So true.

Day +34

Today was a really long day for Jack, but all went well.  We all (as in Zac, me, Jack, Braden, and Nikki) headed down to the hospital around 7 this morning because Jack was supposed to have his radiology simulation done.  Since he was getting anesthesia, he could not eat or drink this morning.  We got there at 8, when he was scheduled to start, but something was going wrong at the hospital and everything was running behind.  He didn’t actually start until 10.  He really wanted to eat, but we took him outside and went for a walk and it was nice to get fresh air.  We met his the people who will be taking care of Jack during his radiation and they were all so very nice.  Dr. Maze will be doing his anesthesia and he is just such a caring man.  It is nice to know that the person who is responsible for your child while you can’t be in the room is like him.  We are very comfortable with him and that’s always good. 

Jack was back in simulation for about a hour.  They had to get him in the exact position for radiation and made a mask that they would fit him in each time to hold his head in the same spot.  Yes, we asked to keep the mask after he was done…we will post a pic of it at some time.  It is all just very interesting to actually learn about.  Of course we wish we weren’t having to learn about it, but it is still interesting to look at medicine another way.  Jack woke up really well and sat straight up and asked for a Popsicle.  That’s Jack’s “thing” after being asleep…he wakes up and wants a Popsicle and some juice and then he wants to go home. 

It was time to leave and then we realized we had to get Nikki to the airport in 5 minutes…perfect because it is 5 minutes away!  Anyway, we dropped her off and then headed over to PCH to see Dr Eshun.  When we were leaving the airport, Jack said, “ohhh…that makes me so saaadddd!”…good thing Nikki and Shawn are moving here in 48 hours!  Anyway…Jack is no longer under transplant so we were able to see Eshun again and that’s great!  Jack’s counts were great.  He is holding his own like a champ.  His ANC is over 3,000, his platelets almost doubled since Thursday and are in a total normal range, and his Hemoglobin is holding steady.  As usual, everyone is so impressed with him.  We ran into Evan and Kathy Lumpkin and that’s always great!  Evan was on his way to his last day of radiation so thank God for that!  He was out over the weekend and bought Jack a Mario action figure so Jack was thrilled as usual.  Braden was a big hit today at clinic.  All the different nurses were taking him from us to show him off to others.  They all just love our little chunk!  Sharon had him sit with her while she ate her lunch and we talked with Dr Eshun.  Funny how much all the nurses and Dr’s become part of your family…can’t wait until you can all meet them at Jack’s big cancer free party! 

Anyway, we talked about immunotherapy and Accutane and were able to get even more information that we have to read over.  It is a lot…a lot of info and a lot of new things that Jack will be doing, but we are ready.  Jack has done so well and we are able to see that there is an end to this treatment. That’s a good feeling.  Clinic took a long time and we didn’t even get out of there until 2, but the boys were great.  Zac and I were exhausted.  So now Braden is asleep, Jack and Zac are asleep in Jack’s room, and I am up cleaning and cooking cupcakes for Zac and his coworkers for tomorrow.  Everything is good…

Please don’t forget…our wonderful friend, Sue, is running in honor of Jack with the PCH Miracles in Motion at the PF Changs Marathon.  She will be running for Jack and raising money for PCH!  Please give her some support!  Hopefully we will be there so Jack can run with her at the end…yes, once again, I will cry!

http://www.firstgiving.com/bsdunne

Here is the link to the story that aired today…

http://cronkitenewsonline.com/2010/10/phoenix-childrens-hospital-will-offer-immunotherapy-for-neuroblastoma-patients/

Day +33

This morning Cheryl came over to watch Braden while Nikki, Jack, and I went to go and meet his Radiation Oncologist, Dr. Steadman.  He instantly got our approval because he really knows so much about Jack.  It is always discouraging when you meet a Dr that is supposed to be helping your son and they know nothing.  He was very impressed with Jack and how well he has done with his treatment.  We discussed his treatment and he called Zac on speaker so he could be a part of the meeting even though he was in Tucson at work.  Jack will be having 20 sessions of radiation.  The first 12 will be in his chest, neck, armpit area and then the last 8 will be localized on what small part of the tumor was left behind.  The “good” thing about Neuroblastoma cells is that it doesn’t take much radiation to kill them.  This is “good” because Jack will not be needing high doses of radiation and that is always great for the long term effects.  He doesn’t really think Jack will notice much during the 20 sessions.  He said by the 3rd week he might have a sore throat, some dry patches on his chest and armpit, and be a little more tired than usual.  There are long term effects that he has to tell us about, but they all have under a 5% chance of happening since the doses are so low.  Those effects are: lung damage in the future, growth plate damage (his left arm might not grow as long as the right), or another form of cancer could develop in the next 7 years or so.  He does not think that any of this will happen, but of course he has to tell us of all the effects that it could have.

We go in tomorrow morning at 8 so he can get a CT and they can stage the machines for his radiation.  He will then go over to see Dr. Eshun after that for a checkup and get his levels checked.  We will know tomorrow if we will start radiation on Monday or Wednesday…hopefully Monday. 

A little funny thing Jack said last night…I was putting him down and after we read a book and said our prayers, I got up to give him a kiss and leave the room and in a very stern voice he says, “Mom…I am sick of this.  I am sick of me sleeping alone!”  It was funny, cute, sad, and everything all at the same time.  He has been sleeping alone since he went of night hydration so he was used to one of us always sleeping with him.  He then laughed at himself and went off to sleep like a big boy and woke up in the morning telling us how he tried so hard to dream about a farm but it just wouldn’t work!  Funny kid.

Thank you for keeping Jack in your prayers!