Day 1 of round 3 of the antibody infusion for Jackers.  We checked in early this morning and were put into our own room that are usually used for transplant patients so we could have our own space.  When the nurse was drawing his labs from his broviac this morning, she flushed the tube with saline after the blood draw and the actual tube blew up a little with a big bubble…this means that the tube is starting to wear thin and it is expected after having it in for so long.  He has had the same tubes since he was diagnosed in March so in order to prevent it from wearing thin and getting a hole, we have to replace the bottom part of his tube.  After talking with the IV team, they decided to see how today goes and then change it out tonight after the infusion.

They started his antibody at noon and it runs over 10 hours.  Around hour 3, Jack started complaining of pains in his tummy and then his legs.  He has been pretty uncomfortable the entire day.  No fevers so far and his heart is a little elevated, but nothing to be concerned about.  We found out that a transplant patient had to come in, so we had to move to a different room about a hour ago.  Jack finally fell asleep after we moved into this room…he has been fighting it all day long.

We have another 3 hrs left of the antibody infusion for tonight and then day 1 will be over.  It wasn’t too bad today, but it’s never easy to watch you child when they are in pain.  He ate really well this morning but once he started hurting, he pretty much stopped eating.  Hopefully he will eat a big breakfast and lunch tomorrow in case the same thing happens for day 2.  If all goes as planned, we will be done Thursday night and then we get to go home first thing Friday morning.

Dr Eshun just came in and he increased the med he takes for nerve pain so hopefully that will help.  So strange because pain is one thing that he really didn’t have at all last round.  You just never know with immunotherapy!  Some kids sail through as if they aren’t getting anything, and some are much worse than Jack.  All in all, he is doing well and his body is responding so it has to be working!!

Today has been a great day!!!  As you can see, we went on Jack’s “fancy helicopter” ride with Bruce Haffner from News 3!!  When we were in isolation for stem cell transplant, Jack woke up one morning and asked me if he could go for a fancy helicopter ride.  My dad got on the computer and emailed Bruce and he emailed back right away and made it happen.  It is amazing what people do for others.  Really, not only Bruce, but Larry and the Pratte family…amazing people.  Thank you so much for doing this for Jack.  He had a ball and it was such a special day for our family.  We will never forget any of you…thank you so very much.

Jack and Zac went up while Braden and I took a walk around the airpark.  They flew over Nikki’s work where she was jumping up and down in the middle of the street with a sign she made for Jack.  Then they flew over the railroad park, which made Jack want to get out and go to the park!  They then came and flew over our house where our neighbors were outside jumping and waving to Jack.  They came back to the airpark and Jack got out and came running to give me tons of kisses.  He is such a sweet kid.  Today has been a great day.  Thank you so very much to all of you…my Dad, Bruce, Larry, and Pratte family who pulled this all together for our little firework….

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!!!!

Our beautiful babies…Jack is as hairy as a little bear (we haven’t had the time (or guts) to get his first haircut post chemo) and Braden…my little boy who is stronger than I am!  It was literally just yesterday that I brought him home from the hospital and now he is walking and learning to talk.  Where in the world did the last year go?  There are times when I look at them and feel like I have been absent, stuck in my own little world of trying to make my family healthy again and they have gone on growing up behind my back.  Then I realize that we have been there for every moment with them and that we are all growing together.  Getting through the tough times together.  Making us all healthy…together.  My family is my world and I am so very blessed.

We had a good weekend at home and were able to get outside and get the boys to get some sunlight and fresh air…it was so nice out this weekend!  Braden is walking everywhere so my mission tomorrow is to find him some new shoes since he doesn’t fit into any that we have here. His “little” feet are too fat for all the shoes so this should be interesting finding something that fits!

Jack ran a couple of errands with Zac today and on the way home Zac got Jack a Happy Meal from McDonalds.  When he got home and started eating it, we realized that his is his first Happy Meal since he was diagnosed!  He got one on the way home from the hospital last March, but he hasn’t had anything since then!  He does not have any food restrictions anymore (even though we still want him to eat as healthy as he can and eat as much veggies as possible!) so he was able to have food from a fast food restaurant.  Also something a little funny…Jack is almost 4 years old and he ate his first hamburger ever.  Not just his first McDonalds hamburger, but his first one.  He ate it all.  He has been eating like a champ the past few days.  He has been trying, and finishing, all sorts of new foods that we have been making him and he always wants to “pounds himself” to see if he has gained back the weight he lost in the last round of immunotherapy.  He has gained it back!  So happy.

We have another few days off…no clinic until Friday.  We stopped his Accutane tonight for this round so that’s good too.  Accutane is such a pain to give to him.  He doesn’t really mind it anymore and he hasn’t suffered from any side effects, but I have to wear gloves when I touch the pills because I have to poke little holes in the pills and try and squeeze every last drop out of the pill into a scoop of ice cream or yogurt.  I cannot let the medication get on me because it can cause severe birth defects if you are pregnant.  Obviously, I am not…but it is just a frustrating medicine so I am happy he is done with it for now.  He starts his shots on Friday since we admit next Monday for round 3 of immunotherapy….Ugghhhhh.

Hope all is well with all of you and thanks for checking in on us!!