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Posts Tagged ‘immunotherapy’

Wednesday, March 30, 2011

Wednesday, March 30th, 2011

Day 3 of antibody is done!!  1 more day to go!!!  Jack did well last night but he did end up with a low fever which we had to wake him to give him Tylenol but other than that he slept like a rock.  He got up early this AM because we had to give him his shot at 8:00 so we could start treatment at 9.  He did good and didn’t really complain at all about it.  We had my friend Melissa pay us a visit which was great.  She brought him Mario Bros socks and he was so very happy about that!  He put them on right away and then proceeded to put them on all of his Mario guys.

He started feeling a little cruddy around hour 5 and got a fever but after some Tylenol and Motrin he perked right up and he was back in play mode.  He played tons with our nurse Katie today.  We got a new roommate but due to some issues (non medical) they had, they are now gone and we have our own room again.  Jack and I went to the playroom this afternoon and he had a great time in there even though he was pretty much the only child in there!  After making our way back to the room, Zac came to bring dinner and visit for a bit.  Katie’s shift was over so we had to say our “good-byes” because she won’t be here tomorrow when we leave.  I got a little teary eyed saying bye to her…it’s hard when she has taken such good care of Jack so many times and now we won’t see her.

Jack is now fully unhooked again and sleeping.  Dr Wood told us that we are going home tomorrow night as long as all goes as well as today did so keep your fingers crossed that we will be home this time tomorrow night!  We are doing Jack’s shot a little earlier tomorrow so we should be done with the antibody by 6:30 PM and on our way home a hour later.

I ran into one our favorite Dr’s today and she was telling me how proud she was of Jack and just how well he has done.  I, of course, started crying and she was telling me how she heard another Dr talk about coming to the end of treatment and what a good way to approach it was.  She said that when you first are diagnosed you are constantly nervous about every little thing that is going on in that moment.  When you are done with treatment, you are constantly worried about what lies ahead.  Soon you will be nervous and worried about how much time you are away from the hospital and then it starts changing to only being nervous right before a scan.  After that your thoughts start changing and when your child complains about a hurt leg your first thought is, “What did you hit it on, what were you playing, what happened?” instead of having the worry of cancer.  She said it is very gradual and totally normal to be freaking out like I am.  I so look forward to that time when Jack complains of something and we don’t jump at the phone to call Dr Eshun.

Here are a few pics from the last few days:

Jack with Uncle Scott

Jack and Aunt Nikki and his huge Luigi:

Jack and me:

Jack and his Mario Guys and his little puffy face:

Jack and Katie playing:

Tuesday, March 29, 2011 (Part 2)

Tuesday, March 29th, 2011

Day 2 of antibody treatment is over!  Jack is asleep now and the nurse is in the process of unhooking him completely for the night.  They figure that since he doesn’t really need any meds through the night, they will unhook him until he needs to be hooked back up in the morning to start day 3 of antibody treatment.  Jack will be able to move around while he sleeps more and hopefully have a little bit of time to run around in the morning before they hook him back up again.

Jack did ok as far as today goes. Nikki came to visit us while our friend, Angie, stayed with Braden.  Jack had a good time when she was here and kept her busy playing with him.  We got him to make a few laps around the floor just to get his legs some exercise since he didn’t get out of bed much at all.  After she left, he started to spike a fever and his belly pain came back again.  He wasn’t feeling too well at all and he said he felt a little dizzy…we are guessing it is from all the pain meds that he is on while the antibody is running.  He ended up falling asleep and took a good nap and woke up pretty refreshed.  Zac came and brought us dinner and hung out with Jack while I took a quick shower.  He didn’t eat much of a dinner, but he did well.  He doesn’t have a fever now so hopefully it will stay away for the night.  We are still roomate free so that also makes a difference when you are trying to be comfortable in the small hopsital rooms.  Oh how I hope we don’t get a roommate in the middle of the night!

We plan on starting treatment at 8 tomorrow morning so we will be able to end early tomorrow night and then that may be our last night here!  CRAZY!!

Monday, March 28, 2011

Monday, March 28th, 2011

This is it…day 1 of the last week of immunotherapy as well as Jack’s last scheduled admit.  Crazy.

Scott brought Jack and I down to PCH this morning and helped me get all checked in and settled.  He stayed for a bit and played the Wii with Jack which always makes Jack happy.  Jack started his anitbody around 11:30 this morning so he will be done about 9:45 tonight.  Our friend Sue stopped in about 3 hours in to the treatment and brought Jack a Luigi kids body pillow!  It is so cute that it is not even funny.  Jack loves it!!  Right after she got here Jack started c0mplaining of belly pain which he usually does around the 3 hour mark.  After playing with Sue for a bit he wanted all of us to go to the playroom so off we went to build some things with tinker toys…not sure what he was building but he called it “The 3,000″ so we will just leave it at that!  After awhile his tummy just started hurting too much so we headed back here to the room.

After Sue left Jack and I watched some movies and just didn’t do a whole lot while he relaxed but would refuse to take a nap.  Zac came down after work and Jack of course had him play Wii with him again until Jack fell asleep in the middle of it.  It’s not almost 8:00 PM and Jack is sound asleep and I will probably try to do the same shortly.  The Dr’s are talking about starting him around 8 AM tomorrow morning on the antibody and since it runs for 10 hours we would be done by 6 PM.  They then are talking about starting him at 4AM on Wednesday and then just after midnight Thursday morning so we could go home Thursday at lunch!  Not sure if this will really happen, but it would be nice to get out of here one night early.  So far we have our own room, but that usually doesn’t last too long so we will see if that changes in the middle of the night.

All in all, today went well.  No fevers, no puffiness yet (but I am sure that will come tomorrow), and even though he was in pain it was well managed.  Hopefully day 2 will be better!!

Saturday, March 26, 2011

Saturday, March 26th, 2011

Sorry it’s been so long since we have updated, but we have just been busy having fun!  Thursday went well with Jack’s clinic appointment…Zac took Jack while I stayed home with Braden.  They were able to see Sharon, Jack’s wonderful nurse, and somehow now have a joke that Jack owes Sharon $100.  Not sure how that happened, but he thinks it’s so funny and when she called the other day to chat about a few other things he told me to tell her that he now wants a million dollars….my boy knows what he wants!

Thursday afternoon we went to a photo shoot for Idol Golf and that was so much fun!  Jack was dressed all in golf gear and I am pretty sure that we will be getting him lessons some time soon.  He had a great time on the putting green so maybe we have a lefty golfer on our hands!  Idol Golf is the company that puts on charity golf tournaments and they helped with ours this past year.  They called and asked if Jack wanted to be their poster boy  so we gladly accepted! We are looking forward to seeing how the pictures turned out and what  it will all look like.  Thanks so much for thinking of us and for asking us to be part of your campaign!

Zac’s brother, Jess, came in town Thursday night as well as my sisters husband Scott so our house was filled with brother-in-laws and it was great.  Jack and Braden haven’t been able to play with their uncles in awhile so that was fun.  Jack loves having them here so he has some more boys to play with!  We spend Friday out to lunch again at one of Jack’s favorite places, Kona Grill, and then went to look at some houses for Nikki and Shawn but haven’t found anything yet.

Jess left this morning to head back to CA while Scott headed out for an interview.  We ended up meeting up with him after his interview for lunch again and then a Saturday trip to Cotsco…never again.  Too crowded for me!!  We are now sitting here while Braden just went to bed and Jack, Scott, and Zac are playing Wii while we are preparing for our BBQ dinner.  All is well here.  Tomorrow will be another packed day while we prepare for our last week in the hospital…still can hardly believe it.  My friend Melissa will be paying us a visit one day  and I am so happy that we will be able to sit and visit with her.  I have a funny feeling that this week may be a bit emotional so if there are visitors that want to come and see us, just let me know first so I can see how Jackers is doing with this last round before you head down.

Off to enjoy our night…I hope you all are too…

PS…Jack is so exciting playing Wii right now that he just yelled at Scott, “You got that…that’s the bomb dot com!  Bomb whatever…you got that!!!”  This kid cracks me up.

Here is a picture of the balloon hats that Zac made for us today…I told him we were going to use him for Jack’s birthday party this year..he wasn’t so sure about that idea!!  We were supposed to be making “alien” faces but that didn’t work out so well!!

Thursday, January 27, 2010

Thursday, January 27th, 2011

Jack had clinic this morning so our wonderful neighbor watched Braden while Nikki, Jack, and I went over to Phoenix Childrens.  Jack’s counts (ANC, hemoglobin, and platelets) all came back great and they told us that his chemistry counts were not only good, they were great!!  So good to hear!  We got the shots that he will be starting tomorrow for round 3 of immunotherapy.  He will get shots here on Friday, Sat, and Sun and then we will be giving it to him all week while he is getting the antibody.  I am a little nervous for round 3 since round 2 was so awful, but hopefully it will be a bit easier this time. 

We also scheduled his scans and they will be on February 15th and 16th.  His bone scan and injection for his MIBG scan will be on Tuesday the 15th and his CT of his chest and MIBG will be on Wednesday.  They will also be doing a hearing test while he is under.  The girls in radiology called Dr Maze and he will be there for both days of Jack’s scans so that’s great!  Jack hasn’t seen him since he visited us in round 1 of immunotherapy so it will be great to see him and know that Jack is in good hands while he is under for his scans. 

Although his scans aren’t for a couple of weeks, starting praying now that he has great results!  We are hoping for more clear scans and for him to be NED again!!!!!

I went out last night with a friend of mine, Jaime, for dinner and it was so great to see her and be able to catch up on everything.  She has been very supportive throughout this entire year and I appreciate it so very much.  Thanks Jaime!!!!