Missed yesterday but I had other things I had to deal with! Sorry!
So, yesterday was my first time seeing Isaiah in almost 2 weeks! It was nice to only have to drive 18 miles to go see him and then to be able to relax at my daughter-in-law’s house instead of at a hospital. Isaiah was in a good mood and was smiling and laughing quite a bit. I even got to hold him for a little bit! I wish I would have taken the time to snap a picture.
He looks so much better. I think just being in his home environment helps a lot but not having all those hoses and tubes hooked up to him is also a definite plus! His scars are healing up quite well and he seems to be in a decent frame of mind. He’s still quite sore from his surgery the other day. I discovered that during that surgery they not only put in the shunt to drain the fluid around his brain down to his stomach area but also that they were able to put in the tube for his chemo, which starts Monday, and also that they did a spinal tap! The spinal tap was to check for the spread of the cancer into his spine. I’m still not quite sure about that part. If I understand right, the cancer has moved to his spine but they want to find out just how badly it has spread. We should know the results of that when he returns to Duke on Monday!
During my visit yesterday, I had a moment to sit down and talk with Stephanie about just what we are looking at in our next steps to fight this cancer. I discovered that my original statement of 1 week of chemo and then 3 weeks of recovery for the next 9 months was wrong. Of course, my daughter’s comments in the last post were off also, he’s not having chemo was every 9 months! That was however a nice little thought, wasn’t it? I’ll tell you all what the doctors told my daughter-in-law, steel yourself and be prepared because the next few months are going to be extremely hard! Starting Monday, Isaiah will begin his chemo. He will be undergoing 21 days of intense chemotherapy and then have 6 weeks to recover before undergoing another 21 days of chemo. There will be a total of three 21 day treatment periods and three 6 week recovery periods. That totals 6 months. So, we are looking at the end of May being the target date. After this 6 month period, they will go back in and do an MRI and see what the treatment has done. This will be the most important MRI! It will determine the next steps in his treatment.
Let me clarify about Isaiah’s chemo before going any further. Once again, I may miss something so please understand if I have to make corrections as I go along. Sometimes this all seems like a dream and I am just hoping to wake up and discover it is over. Unfortunately, that hasn’t happened yet. Monday and Tuesday will be like an outpatient type treatment. Isaiah will go in and receive 6 different medicines during this time, as well as 2 different oral medications. I’m not sure of the purpose for everyone of them but the main purpose of these medicines will be to prepare him for the intense chemo he will undergo the next 4 days. These medicines will help to build up his white blood cells, they will help to protect his vital organs from bleeding, there will be some sort of liquid metal that will try to go in and confuse the cancer. Basically it’s to try to prepare his little body for what will happen the next 3 or 4 days. The chemo itself will begin probably late Wednesday and continue Thursday, Friday and possibly Saturday. According to Stephanie, this chemo will go through his little body and be like fire to him! It will destroy his white blood cells, dry up bone marrow, and cause his skin to peel from the heat. It will literally pour the heat out of his pores and he will have to have a sponge bath every hour just to keep his temperature down. There is a chance he will lose his hearing. There is also a chance it will affect his vision. There is the chance his bladder will bleed or other vital organs might have trouble.
In essence, we think we have experienced a hard time so far with the 7 different surgeries during the last month but that was simply the calm before the storm! The next 6 months will be, perhaps, the most trying times yet! We have no idea how Isaiah will respond to all of this treatment. Will his little body be able to handle all of this? Will this destroy this aggressive and fast moving cancer? Even the doctors aren’t really sure what to expect because this is on such a tiny little tot! Any time you take this kind of treatment on anyone under 4, you are entering into uncertain territory! I still have to work and pay bills and take care of my two daughters so I won’t be able to be there during Isaiah’s chemo. My wife will be there and my daughter-in-law and there will be either her mother or one of her 2 sisters through the middle of January. I can only imagine how hard this will be for them. I am sorry I won’t be able to be there to support them because I feel they will need all the support they can get during this time.
I know I have asked for your prayers in the past but, if you have procrastinated up until now, please take the time to remember my little grandson in your prayers. I know something like this would be hard for a grown-up such as myself and I can’t even imagine how hard this is going to be on my little grandson! It just blows my mind to think of what he will be going through in the next 6 months! How in the world can such a little baby endure something as this? Only through the grace of God, that’s how! I continue to believe and trust that God will keep his hand on my little Isaiah during this time!
As I stated earlier, this will last for 6 months. After this 6 months they will do another MRI and see what the chemo has accomplished. It’s at this point where we will hope for good news! If they see that the cancer has been diminished, then we are looking good. If, however, the cancer is not diminished and the tumor has grown or it has spread elsewhere, then we will have a different outlook. I’m not sure if that will be where they give up but, if I understand this correctly, if the chemo hasn’t worked after 6 months then the options are very limited from there. I’ll be looking for a positive outcome toward the end of May! Until then, I will deal with one step at a time. We already know what to expect if the outcome is positive in May but I will deal with that when we reach it! That’s 6 months away. I think we, and I, need to deal with what will happen in the next 3 weeks for now.
I’m going to spend the next few days trying to prepare myself for what may be the most trying 3 week period of my life! I’m hoping my little buddy will surprise us all but I have learned lately to prepare yourself for what the doctors tell you and then be happy when you get a little surprise!
Please, remember to keep Isaiah in your prayers. For those who have asked, his mother’s name is Stephanie and his daddy’s name is Joseph. My wife’s name is Trina and my two daughters are Jessica and Julia. Why put that? Well, some folks like to call out the names to God instead of just saying “Touch this family” and I can respect that. Stephanie’s mother and sisters are Tammy, Kristen and Tanya.
Thanks again for all your prayers and I will try to continue to update you here.