September 19, 2016

Figured we were due for an update since it's been a while and I want to share where we are with things. 

Cole checked in Friday, Sept. 9th for his two-day chemo treatment and fortunately all went well and he was able to go home Sunday and watch football. Football Sunday's are still his favorite. :-) 

While we still battled nausea/vomiting at home, there were some good moments where he felt well enough to converse and seemed like himself. Then as the week went on he went downhill as he normally does after chemo. His counts were still very good on Tuesday when the home nurse came to do his labs, but then he plummeted.  

Unfortunately, Cole also developed tape blisters around his port this past week. He was permitted to go home accessed (still having the needles/tubes in) Sunday (which was good) but he now seems to have an allergy to the dressing they were using. He has sores all around his port and they were so raw/bleeding and have finally started to scab over. But they're currently covered in dressing now so it may take a bit longer to heal.  While he normally wouldn't go home with his port accessed, they let him because he had to be accessed 4 times in a week and the poor thing was so bruised and so incredibly sore. I mean, every time they need to access him they have to stick needles through his skin to access his port for labs, IV medications, fluids, etc. While the port is safer because it's completely under the skin, it is more painful than the PICC line because he has to get poked with needles every single time they needs labs or he needs treatment/medication. It won't be long before he develops scar tissue in that area.

Friday evening he spiked a pretty good fever because he became neutropenic (per the usual after chemo) so we had to go to the ER and he was admitted. We've been in the hospital ever since. His counts were pretty much zero Friday evening and he had to get 3 platelet transfusions in 1.5 days as well as a blood transfusion Saturday. His body was eating his platelets like candy it seemed.  He has gotten worse each day and it doesn't seem like we'll be going home any time soon. He is scheduled for his 5-day mega chemo this Friday but at this point that may be delayed if his body isn't ready.

The effects of the chemo now have worsened and he's struggling with some things, but he's fighting. He has mucositis so incredibly bad throughout his body from his mouth through his bottom. He has sores in his mouth, throat and his bottom, and they're painful. His little cheeks are swollen and he talks like he's been at the dentist. His mouth is so raw it hurts to talk sometimes. We were able to get a suction tube/wand hooked up by his bed for him to use to try to get it out of his mouth because it's too thick to even spit out very well. This is very helpful for him because he can use it himself as his mouth is so sensitive that when we try to help it hurts him sometimes.

Honestly, this is the roughest I've seen this baby in a very, very long time. Water filled my eyes momentarily as I've typed...but I have to push through. This has been such a hard week and it's so exhausting. So many things on his body look different, feel different and he feels so bad all the time. He's cranky all the time. But nobody can blame him. Hearing a tear-filled "Mommy, why does it hurt so bad? Why do I feel so bad? Please help me Mommy, please make it better" about broke me the other night. He's fighting so many things right now..but he continues to be the strongest person I know. In the midst of all this pain and being so cranky, he shifts and tries to converse with me, watch a movie, talk normal and positively...and move on. In true Cole fashion. Man he makes me so incredibly proud.  

We asked for new/additional nausea and pain medications which started yesterday.  He's on a morphine pain pump to try to help with the sores/pain. But nothing will really help all of this much until his counts go back up and he rebuilds his immune system to fix all this. The doctor said he is producing the cells, but their job is to go straight to what needs healed. So all the numerous things that need healed such as internal sores, etc. will receive them first before we see them in his blood count hence why his counts are still at zero. 

We knew this but hearing the doctor remind us was tough..the more rounds of chemo he undergoes the harder, and longer it takes to recover. And he has several more months of this. And we haven't started radiation yet either. I haven't even captured everything in this post as it's tough to even try to explain everything that goes on and what it's like. All these tubes, wires, sores, changes with the body...we can't even begin to imagine, at all, what this feels like for him...both physically and mentally. I think how much I'm struggling this week, then smack myself and remind myself it's nothing like what this sweet boy is going through and it's not about me..gotta buck up and PUSH through. We WILL remain the best we can be for him.

So we are scheduled for a PET scan on October 13. We will anxiously, but nervously wait to see what things look like. We can't assume the treatment has continued to work because cancer cells are smart, tricky and can change/hide/camouflage themselves from the medicine. The bastards! So just because we saw progress on his last CT scan, doesn't mean we will again. BUT, we DO believe in our hearts and minds, and refuse to think any differently, that the treatment HAS continued to kill this evil disease.  We will not accept failure and this kid is beyond tough...he WILL beat this and come out on top. There's NO other option.  Period. 

Please continue keeping this sweet angel in your thoughts and prayers. And pray for the small, but BIG, victories such as regaining his counts and immune system very soon, no fevers, NO MUCOSITIS, less pain and just more moments of feeling better.  

Bless you all,

Team Cole