Day 2 of antibody has just ended!  Today has been a very long day for all of us!  Jack did well last night and had low fevers on and off, but nothing too shocking.  He woke up early this AM and we started getting everything ready to start the 2nd day of antibody.  We started earlier today, around noon, so we could get done earlier in the night than we did the day before.  He broke out in a rash a few times during the day, but his coughing has slowed down a lot so that’s good.  They decided to come and do a breathing treatment on his this morning and that did not go well at all.  Right when the respiratory Dr walked in I noticed she had a mask in her hand…Jack HATES oxygen masks.  He had an awful experience with one when they put him under for his first CT before he was diagnosed and he will forever be scared of them.  I asked her if she planned on using the mask and she said, “Well, how do you supposed I give him the breathing treatment without it?”  I said, “Not sure, but you will have to figure it out.”

Our wonderful nurse, Tara, said that she should just do a blow by with the albuterol and see if that worked.  Jack was still pretty upset about the whole thing and kept yelling while it was going on but I am sure it would have been much worse if he had a mask on him.  I had a mini break down because my heart brakes when I watch him go through so much awful stuff.  The breathing treatment didn’t do anything to help his cough, it in fact made it worse but he has gotten better on his own throughout the day.

This afternoon he fought a high fever of over 104 F, but now that the antibody has finished for the night we are hoping that it doesn’t come back again.  Jack is getting pretty tired of being here, but thankfully he is halfway done with this cycle.  When he gets up in the morning, he will only have 2 more nights that we have to stay here and then we get to go home and be “normal” for a few weeks before we check in again at the end of March.

Let’s hope that tomorrow goes better than today and that his fevers don’t get as high.  Dr Eshun saw Jack this afternoon and thinks that it’s a good sign that his body is reacting because it is working.  So although he has had clear scans already, we just have to keep in mind that this treatment is going to help his scans stay clear.  We can’t give up on it yet…even though I just want to scoop him up and go home.  He has come so far.

Zac just left to head home before going to work and we are all packed up here because we have to change rooms tonight.  Not something we really want to do, but we don’t have much of a choice!

Day 3 will be done in about 2 1/2 hours and it went pretty good most of the day.  Jack woke up and was in a bit of a crabby mood, but who can blame him.  He was still swollen and had come red dots on his arms which is part of the capillary leakage that can happen when they swell up like he is.  He had a slight fever this morning, but nothing to worry about.  Sue stopped by again with a coffee for me and a vanilla scone for Jack.  While he wasn’t showing much excitement at the time, he did perk up about a hour later and was happy he had his favorite Starbucks treat.  Thanks Sue!

The antibody started around 11:00 today and he did really well for the first 5 hours.  Nikki came to visit us which allowed me to take a quick shower, but even more important, it really made Jackers happy and I think it was a nice distraction from everything that he is going through.  Jack didn’t have any pain complaints like the past few days so that’s good.  About a hour ago, his fever went back up again he is sleeping after having Tylenol and Motrin.  Thankfully his fever has only been as high as 101.8 so we are clear from the 105 fevers that he had last round.

Zac is on his way here to see us for a couple of hours before heading home and then back to work again in the AM.  Hopefully Jack will wake up so he can see him because he was looking forward to it!  We have decided to do his broviac repair before we leave on Friday instead of doing it tonight.  It is just too much on our little man.  We will be finished with the 4th day of antibody tomorrow around 9 PM and then he will have a break from everything until the morning so that way he will be well rested and happy since we will be going home.

Hopefully tonight will be a great night and tomorrow will be easier than today…it seems like each day gets a little bit easier.  Thank you for checking in on Jack and for sending happy thoughts and prayers our way!

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!!!!

The second day of immunotherapy has been a long one. Jack started around 10:40 AM and was doing great with no complaints of pain at all. About 3 hours in his heart rate started slowly going up. After a couple of hours of it rising and after many talks with all the Dr’s and nurses, they decided to slow down his transfusion to see if that helped to bring it down. Tachycardia is a common side effect of immunotherapy so they were not too surprised to see this. Hopefully the rapid heart rate will only last the first few days and we won’t have to worry about what to do. They ordered an EKG to make sure that his beats were still regular although the rate was high. We didn’t get that done until 45 minutes ago so we probably won’t know those results until the morning.

Since they turned down the infusion, his heart rate came down a little bit but it istill high. He is not showing any other effects (his blood pressure is good, playing, eating, drinking, no bloating, etc) so they have just decided to increase the infusion back up to the normal rate and watch him. He will finish around 11:30 tonight and then we will start up again around 9 AM tomorrow as long as everything goes as planned.

Please take time tonight to say some extra prayers for Jack. Please pray that his heart rate gets back to normal and we can continue with this last part of his treatment. Please take some time and send Jacks’s website to others so we can have as many people sending positive thoughts and prayers his way as possible. Jack is a fighter and always comes out on top so that’s what we are expecting to happen. We just want as many people in Jack’s corner as we can!

More to come tomorrow