July 13, 2016. Scans & Treatment

We had our CT and PET scans on Monday which we were really nervous about since they were looking to see if there was any disease in any other parts of the body. Fortunately, they did NOT see any tumors anywhere else - head/brain, arms, or anywhere in the tummy (liver, etc.). Hallelujah!  However, there were a few new spots in the left lung where last week there was only one spot there. So it is still growing/spreading pretty quickly through the lungs unfortunately. We pray it doesn't travel anywhere else.

Our heart rate has continued to be high and he's needed oxygen the past two days so they're exploring those things. We need to move around more to help the lungs but otherwise they don't think there are issues there. He may have some small collapsed pockets that we need to work out which moving around more and continuing to work on our breathing will help.  Also still spiking fevers which is frustrating, but again, likely caused by the tumors. Since he looks good and other vitals are ok, they are still exploring the high heart rate.  He had an EKG and Echo yesterday which were normal, thank the Lord, so it's possible the high HR could also be from the disease but they want to keep exploring.

Our NG tube has been going well so he's getting nutrition. Before starting we met with the dietician to discuss what would go through it. While the standard is Pediasure which is pretty much what all the kids get, I asked about other options. Other options are more costly, but that isn't important to us - we want whatever is best for Cole. So we selected a complete pediatric blended option which consists of whole foods (it comes in a juice box looking container that they poor in the bag). So..basically he's getting chicken, vegetables, etc. through his tube which we feel is the better nutrition option to fuel his body.

We had our first chemo treatment yesterday which consisted of three different medications. The most potent of the three impacts the kidneys so he had hydration treatments before, during and after to help flush the kidneys. Plus he still has a constant IV fluid. He also had a continuous medication to help with nausea/vomiting and Benadryl all through his IV.  Of course, Cole tolerated everything like a champ. He didn't feel poorly at all which was great.  He slept the majority of the day off and on yesterday but with his lack of sleep recently we just let him rest. To see him comfortable enough with little pain so that he could sleep was refreshing.

Our doctor is back today and we are anxiously awaiting to see if there are pathology results as well. Nothing had been posted yet for the other doctors to see but it is common that the main doctor will talk directly to the pathologist throughout before things are posted so she may have an update for us today.  Plus, as previously shared, our doctor is very persistent and aggressive so I wouldn't be surprised if she has some information.  We don't expect anything back yet from the ones sent out, but hopefully pathology here was able to identify some things.

Again, until we have a diagnoses we won't know Cole's exact treatment plan. It is likely he won't have another chemo treatment until next week unless the doctor adjusts that based on pathology. The main things that need to happen before we can consider going home are transitioning from the continuous IV pain meds to oral meds, oxygen levels/needs under control, and controlling fevers (and making sure they're just from the disease and nothing else).  Overall, they say Cole looks very well, all things considered.

I wanted this update to focus on where we are at with tests, treatment, etc. since that is everyone's main question. But as for how we are doing ourselves...we are good right now. Monday was a tough, emotional day for us, but yesterday was better and today is good so far. We must remain incredibly strong, but that isn't to say we aren't still having emotional moments. I don't think there's really been a day I haven't cried, but overall I think I/we have tackled each day head on.

As always, thank you to everyone for the continued thoughts and prayers.  I can't tell you enough how blessed we feel to have such an AMAZING support system. The complete outpouring of support just astonishes me, but we all feel so incredibly loved, so THANK YOU.