Day +27

Jack had another clinic appointment today and all went well.  He is holding steady with all of his counts and is doing great.  He gets to stop one of the medications that he went home on so he is only down to an antiviral that he will have to take for a year.  He is also staying at his weight…not losing, but not gaining.  He eats all day long, but he is also running all day long.  They said that he has always had a high metabolism and they expect it to stay high for awhile after transplant.  We are going to start him on his protein powder again as well as some other supplements that he used to take so hopefully that will help him put on a pound or two!

As of now, the transplant Dr’s have released him and he will start to see his normal oncology Dr, Dr. Eshun, as of next week.  We will see him on Tuesday and then we will go to see the radiologist on Wednesday.  They are hoping to start the radiation the week after that.  We are a little nervous and don’t really know what to expect, but we will just take it one day at a time. 

Jack will meet with the transplant Dr’s again around Day +100 (Dec. 12th) to have all of his scans done again.  That will be the first time he will have scans since he stopped chemo so we are really looking forward to having that done.  That would be a great Christmas gift…NED.

There was a news story on CBS last night that talked about Neuroblastoma and the immunotherapy that Jack will be starting in December.  It was great to see that the news is FINALLY talking about NB (and childhood cancer at all actually!) and hopefully it will go on from there.  I will attach the link so you can watch it.

http://www.cbsnews.com/stories/2010/09/29/eveningnews/main6912677.shtml

Also, we told you how Adrian Wilson had a ad for his foundation and Jack in the Cardinals program this weekend and we wanted to post it for you all to see!  Once again, thank you Adrian, Evon, Ann, and the Cardinals!!

Today was a good day!  Not only did we have a great day, but did I tell you that our “Red team Cardinals” (as Jack calls them) won!  Woo hoo!

Zac was able to come home this afternoon and can I tell you how happy Jack was!!  He was just totally thrilled to have his Daddy home and all he wanted to do was play, pretend, and hug on him.  It was so great and I know that Zac was in total heaven. 

When we were in the hospital for stem cell, we were told by Evon (our wonderful friend who has gone above and beyond for our family) that we were offered a suite for the Cardinals game tonight and we were so excited.  Zac and I were blown away once again by Adrian and his family, Evon, and the Cardinals for their support of our family.  We are not sure that we would be where we are with Jack’s foundation without the Wilsons as well as Evon and her family.  We had not met them before Jack as diagnosed, but since then they have become a part of our family and will remain there for a lifetime.  We can only hope that they know how thankful and appreciative we are for what they have done for us.  In the program that was handed out at the stadium for tonight’s game, there was an ad for Adrian Wilsons foundation (www.adrianwilsonfoundation.org) that showed his support for Jackers.  We were blown away by this and all that they do.  Thank you.  Thank you so very much…we love you all more than you know.

Our bubble of excitement was soon popped when we found out that we could not take Jack out in public for the next few months and could not go to the game tonight, so we thought that Maya, Woody, Ronan and the boys would enjoy the game so Evon passed along the tickets to them.  Since Ronan was just diagnosed with Neuroblastoma a month or so ago, we thought that they might enjoy the night out and have some fun.  We hope that they had a great time together tonight found a few moments to just have some fun…

Zac has left again to go back to Tucson, but he will be back on Friday night for sure.  We have a clinic appointment tomorrow morning at 11 and we will go from there. 

Again, thank you Adrian and Alicia, Evon and Garett, and the Cardinals…you are all amazing.

P.S.  Pretend Jack’s number on his jersey is 24!  We need to order a Wilson jersey!

Day +22

Jackers had his clinic appointment on Thursday and all went wonderful.  His levels are climbing and he didn’t need any products so it was a pretty quick visit.  He gained a pound since Monday so that was great!  Hopefully he will gain another by next week.  He has been drinking well so they cut down his hydration at night from 10 hours to 1 1/2 hours and that’s wonderful because this means he will be getting a better nights sleep instead of getting up every couple of hours to go to the bathroom! 

Thursday night, our neighbor knocked on the door and let us know that Hope Kids was bringing by the Batmobile for Anna and wanted to know if Jack wanted to see it too.  Anna is our neighbor that has been battling cancer for the past 5 years and is just the sweetest girl.  We put on Jack’s mask and took him out to see the fancy car.  He didn’t really get what was going on, but it was a little something different to do for a few minutes.  Anna was all dressed up and was able to go on a ride in the car with her dad.  Nikki and I tried to take pictures, but it was dark and we have no clue how to work the camera so they didn’t come out!  I will have to ask her mom for some pics…

Zac has been in Tucson all week for work and he picked up some sort of a head cold and the nurses don’t think we should take a chance of him being around Jack so he wasn’t able to come home yesterday for the weekend.  He stopped over to get some clothes that I had put together and he just had to stand in the garage while the kids stood there and got to see him.   It was pretty sad actually.  He wants nothing more than to be at home and he can’t even hug Jack or Braden.  He is staying with Brian and maybe it will be good for him to actually get some friend time in…we have to find the positive in all situations!

We have posted a couple of videos that were made on the website under the “media” tab.  Everyone has been trying to get Oprah to do a show on childhood cancer since this is her last season and it hasn’t been done before.  More people need to be educated on childhood cancer so we can bring in more funding for research and find cures for all of the little fighters out there.  We didn’t know that this video was going to be made, but Jack is in it (as well as a few other friends from PCH) and we thought you all would want to see it.  Also, there was a video sent to us by someone who we don’t even know but he took the time to put together a little video of Jack and we love it.  It just is a reminder of all he has gone through and what a strong little boy Jack is.

We made Jack’s appointment to meet with the radiologist on October 6th so we will have more info then on what the plan is.  We go back to clinic on Monday and Thursday of this next week so let’s pray that Jack continues to do as well as he has been!

Day +18

Jack had a clinic appointment yesterday to see how his levels are and they were great!  His platelets are climbing and his hemoglobin was steady.  He may need blood in the next week, but as of yesterday everything looked great.  They want to continue his iv fluids at night until we go back on Thursday and check his hydration again.  He isn’t drinking the 40 oz a day yet so they will continue them until he does.  He had a really good day yesterday as far as eating goes…he is almost back to normal!  He did finish his adult size portion of vegetable lasagna last night and that is always good! 

He is doing better as far as sleep goes…no more bad dreams.  I have been sleeping with him since he is up every couple of hours because of all the fluids he is taking in.  We transferred into our room instead of Jack’s since Zac had to go down to Tucson this week for work so it is much better being in a bigger bed!  He told me that he loves having sleepovers so I am pretty sure this will continue until he is off fluids at night.

We go back to clinic on Thursday for another check and then I am assuming we will be making an appointment next week to meet with the radiologist to see what the plan is…

Day +15

We are home!!

On Thursday Jack’s ANC jumped up again to over 13,000 and he started to show a little bit of interest in drinking and eating. He started taking his antibiotics orally, they stopped the IV nutrition, and he stopped needing any pain medication. He was showing a little bit of interest in playing, but not much. He still had the attitude that he was pretty much done with everything having to do with the hospital. Grandma Jean came to see us and that is always a nice visit when she is there. Jack pretty much just watched his show and took a nap while she was there, but Zac and I were able to visit for a bit.

Friday morning came (Day +14) and his ANC was up yet again and all of his levels were great so there wasn’t a need for any blood products and we got the OK to leave. He got unhooked from the IV fluids and he was so happy. My dad, Nikki, and Braden came to help us pack up and get the heck out of that room. Kacey, a long time friend of mine, is a photographer and she was there to capture it all. We got ready and went to leave the room and all the nurses started clapping and hollering for Jack. I thought he would get a little scared, but he rode a scooter right out of the room. The nurses had streamers that they held down low and he broke through them as he rode by on the scooter. It was a very emotional sight for all of us. It was such a relief to be able to get out of that room and let Jack celebrate such a successful transplant. He did so well and has recovered so fast that he has amazed everyone.

Last night there was a benefit held at Dream Dinners for the Jack Morton Foundation and Nikki and I were able to attend. It was so great being able to see friends and once again, really soak in all of the love and support we have. It still amazes me how many people we have standing up and fighting with us. We want to thank Amy McDonald for putting it all together for us and for all of those who took the time to promote and support our foundation…it was a great time and we are looking forward to eating our dinner tonight!

After the benefit, we came back to the house and a home nurse came over to show Zacand I how to hook up IV fluids to Jack at night. He is getting fluids at night just to make sure that his intake is high enough. The chemo that he just had is so harsh and they want to make sure that he is getting enough to flush his system every day. Hopefully he wont have to do it for long.  Jack had a rough night last night becasue he had problems sleeping and seems to be having some bad dreams still.  I slept with him and we had to get up a few times during the night to comfort and calm him down.  Hopefully this will all pass soon…

Jack is a different boy today…he is full of energy and finally eating and drinking.  He is still not up to his “normal” amount of intake, but he is getting there.  He is so happy to be home and has no problem letting us know how thrilled he is.  Brady is just such a joy to be with as well.  He is so happy and is just about ready to crawl.  He is strong enough for sure, he just hasn’t figured it out yet. 

We have to take Jack in for a clinic appointment on Monday so we are going to try and enjoy these couple of days off before we head back in to the hospital!