Oh geez…today has been a really long day for Jack.  Zac and Jack got home really late last night after being in the ER and they told him that they didn’t have a room ready for Jack for this morning and that they would just have to call us.  Since I am not that good at waiting, I started calling at 4:30 AM to see when we could get Jack in to start his treatment.  His swabs all came back negative for flu or any infection so they decided that they would keep him on the 2nd floor that we are always on but he had to be put in an isolation room since he has a runny nose.  The nurse called me at 7:15 and they finally had a room ready, so we got ready and came down around 9:00.

After we got here, I was quickly reminded that we had to put in a hand iv for his pain med.  I totally blocked that out and forgot it was round 4 and that we were going to have to do that again.  Needless to say, it didn’t go over well with Jack, but he put up with it and he had a line placed in his right hand.  He was mainly upset because he felt that he couldn’t play his Wii if he had a “poke” in his hand.  We finally started the interleukin around noon and then the antibody around 2 PM this afternoon. About a hour in, he started getting his persistent cough that lasted for a couple of hours.  He also started complaining of pain in his tummy and we had to keep pushing the button.  He finally just gave up and took a nap but you could see the pain still on his face.  It was awful.  After giving more pain meds, he seemed to be doing a little better.

He woke up around 5 and his cough came back and came back pretty strong along with that random rash that he got in round 2.  He coughed over and over again until 8:30 when I had them just turn it all off until they figured out what to do next.  Nikki was here because she brought me something to eat for dinner and I could just see it in her eyes how awful this is to watch Jack.  He was/is miserable.  After talking with all the Dr’s, they decided to leave it all for for a little bit while his cough got better.  He just fell asleep again and they have started everything back up again.  They are doing the antibody at a lower rate for awhile to see if his cough comes back again.

In all, today was awful.  I just pray and hope that tomorrow will be better.  Zac will be here and hopefully we can get through day 2.

This weekend has been great, but as I said before…Jack has had a stuffy nose and tonight he started to develop a fever.  After checking him for a few hours, we called Dr. Eshun and told him and he said we had to call the on-call Dr to see what he said since Jack has a broviac and it is a rule that if they have a fever of 101.5 or above, they have to go in to the ER.  He believes that Jack has just a cold, but since he has a central line, we have to bring him in.  We called the on-call Dr, Dr. Watanabe, and he said that we had to bring him in tonight.  Jack has a high ANC so he does not have to stay at the hospital even though we will be checking in at 7 AM tomorrow morning.  Frustrating.  Zac is at the ER tonight with Jack so he can get some antibiotics and then he has to bring him home so I can turn right back around and check him in in the morining.  Zac has called and his fever has gone down so that is good. Not sure what they will do tonight, but Jack will be home late and then we will be checking in early tomorrow morning.

As I get more and more frustrated with all of this and as I get more and more upset with all that Jack has to go through, I see this quote tonight, “It’s not the load that breaks you down, it’s the way you carry it.”

So, deep breath, thank God how well Jack is doing and push through this and the next round of immunotherapy.

Jack had a great Thursday night…no fevers!!  Zac said that everything went well and they were out of the hospital by noon on Friday.  When they got home, Jack got a big package from Dylan’s Candy Shop in NY and he was so very excited!!  Perfect timing (Adrian, Alicia, Evon, Garett, and Amy!!) for a huge candy gift!  He was thrilled as you can see from the picture of him doing a “Luigi” jump next to the candy tower!  Really, thank you so much for the gift…he was so very happy!

As you can tell from his picture, he was pretty puffy still when he got home and he was still congested.  He was full of energy though and ready to run around and play!  We all had dinner together and he was so happy to be home that he didn’t even get to bed until after 10 PM.  We got up early this morning and went to breakfast with my Uncle Jim and Grandma before he left town.  Zac, Jack, and I spent the day together which is something that hasn’t happend in a really long time.  We were able to talk with Braden on Skype and that made us all happy.  This house is really empty without Braden here!  Even though Jack is running around and crazy happy, it is so different not hearing Braden’s happy screams!

Zac has fallen asleep with Jack tonight after reading him a long book and all is right in our house.  We have plans tomorrow to get a few things done and then pack again for another 5 days at the hospital.  We are a little nervous for this next week since it was so hard on him last time, but we know Jack and know that he will power through like the champ that he is.

Funny story…last night Jack and I were laying in bed and he was starting to fall asleep when he said, “Go away cancer, go away.  Go to the moon!!!  Mom, I really think that the buggies that I have are like monsters.  I think we should step on them and kill them.  You should wear your flip flops though and so should dad…I think I will too.”  I told him that was a great idea and I was all for killing those buggies that have tried to take over his little body.  He then said, “Well, I think I already scared them away.”  ………..Yes, I cried.  This little boy is so very smart.  He is so in touch with all that is going on and way beyond his years.

18 hours to go!!  Jack had a pretty good night last night.  His fevers didn’t get too high but the poor kid was snoring like a mac truck.  He woke up first thing this morning and wanted to go out and ride the scooter in the hallway, so off we went.  He made his rounds on the floor and then we went in to the play room and stayed there until noon.  He was pretty puffy this morning, but other than that, he was doing great!  He didn’t really get a fever until after lunch and then it went back up again.  I looked up his interleukin on the Internet today and the most common side effects are anxiety, dizziness, discomfort, increased cough, loss of appetite, pain, and runny nose….it made me feel better after reading that because I have been so concerned about his congestion, that maybe he was getting a cold or something, but if it says that cough and runny nose are common side effects, then we will go with that instead!

We got another surprise visit today from my Grandma and Uncle Jim so that was great!  Jack made them play with his Mario guys and tried to teach Jim to play his little Nintendo, but that didn’t go over too well!  I think we will leave the Mario games to Jackers!

After they left, Jack fell asleep so he is napping now.  Zac will be here this evening and I think he might stay here so I can get home for one nights rest before the weekend and next week. We cannot wait to get home.  Jack will feel so much better after he is unhooked and back at our house.  It is going to be very strange there to be there without Braden Boy…

Let’s hope tonight goes well and Jack and Zac get out of here on time!

Jack slept better last night even though he was still pretty congested and was running fevers on and off all night.  His blood pressure dropped a little low, so they had to give him a bolus of fluid, but all in all, he did good.  He was more active today which is great.  He fought a fever still all day, but it was and is very low grade as of now so again…something good!

We had a surprise visit today from my Grandma and my Uncle Jim and that was wonderful!  Jack loves having people visit and I think at times it distracts him enough to make him “forget” he isn’t feeling all too great.  He made Jim read every book to him and they stayed with him for a minute to I could actually take a break and wash my face so it was nice.  After they left, Jack and I ended up going to the play room for a bit and taking our walks around the floor.

Zac came tonight after work to say hello and bring dinner for him and I.  He couldn’t stay all too long since he had to leave again for work at 4:30 AM tomorrow to head back to Tucson.  We walked around a bit with him tonight but Jack stared having a bit of a meltdown so we headed back to the room.  He is tired and he has been through so much that he deserves a breakdown every now and then.

Braden is doing well in CA with my mom and dad…he is happy as a clam and everyone who lives by them just loves him.  I can’t wait until he comes home!

We have 38 hours left of this and then we get to go home….let’s hope it goes by fast for all of us!!