Go, Go, Go

I know it has been awhile since I last updated the blog, but let me tell you, this boy is keeping me busy! And to think I thought I was busy before going to the dialysis clinic three days a week for "only" 4 hours. Just to give you a sense of what our weeks are like, I have posted a picture of our calendar and the rolling pharmacy/gear bag we take with us every time. And that is only scheduled visits. Add at least 3 unscheduled visits a week to that just for Conley. And then there is Choice. That's a whole other blog I will do later. We literally live at the Specialty for Children office building. But, I will gladly be this busy if Conley can remain at home and my boys can be together every day! And, I am extremely lucky to have a nurse that is not only great for Conley, but has become a good friend of mine as well. He has seriously become part of our family. If only he would agree to live with us! :)

Conley is slowly making progress and has started returning to himself these past few weeks. His personality and amazing spirit is back, along with his smiles and eye contact. He is slowly gaining strength back, but is still having a hard time with several gross motor skills such as sitting independently and holding his head up. It's unreal to think that a child who was doing all of these milestones early despite his kidney failure has lost a significant sense of motor stability. Slowly, he is making progress and gaining the strength back. He is such a hard worker and only continues to push through these obstacles!

We have successfully completed Cycle 1 of 4 of chemotherapy. Conley has done amazing, and surprisingly has not had too harsh of side effects yet; however, we are told that they will continue to accumulate over time. He also did not need to receive any blood or platlettes during this cycle, which means his body is recovering well on it's own. I love hearing this good news! Another good thing for Conley is that he does dialysis and receives clearance of his blood, and therefore, of the chemo medication as well. The chemo medication stays in his system long enough to do the trick by killing cancerous cells, and then is removed by dialysis, which will help the over-accumulation of the medication. Most people who are on chemotherapy do not also do dialysis (yes, our son is special), and so the medication stays and accumulates in their body for weeks and months after. Another win for us, I guess.

We have been very blessed to have family members come into town to help us with moving into our new home, including Jonathan's parents and my mother. They all played an essential role in making the move easier and less stressful for us, plus the boys loved visiting with them. We plan to have more family visiting us throughout the next few months and we cannot wait. This past weekend was our third weekend home from the hospital but the first one where we did not have to go back to the hospital or clinic! A huge success in our book. Funny story that I was telling Jonathan how "easy" this past weekend seemed, and how much down time we had - despite Choice waking up with a fever on Sunday and Conley pooping all over his "external parts." Ha!! And remember, Choice with a fever and Conley at the highest risk for infection due to chemo - not a great combo. Yet, the weekend was wonderful and blessed. Jon handled the poop and I handled the fever with my essential oils (got rid of Choices fever in less than 24 hours!) Our new normal, I suppose :)

Conley will start Cycle 2 at the end of this week and he will receive 3 medications. Usually, this is the harshest part of the cycle since he receives Cisplatin (chemo medication) on Thursday, which is very difficult for most people. It is one of the stronger medications. We shall see what the weekend brings, and hopefully with a more stable and controlled withdrawal/wean off of narcotics, we will have an easier time. Conley is still on Methadone to control the withdrawal, and our current palliative medicine doctor is planning to do a long sustained wean in hopes to avoid what we experienced after initially being discharged from the hospital. Fingers crossed! Prayers are welcome for Conley's ongoing comfort.