July 25, 2016

I won't make you wait this time..😊 so I'll start with we still do not have a diagnoses, but do expect some changes with treatment this week regardless.

Since the last update, not a lot has changed..in general. We've adjusted medications for various things/reasons, had a few X-rays to check things out in the chest and stomach, and are still having fevers, needing oxygen and have a high heart rate. Don't need to specify all the details, but we've had ups and downs along the way.

This past weekend was pretty "boring" as we (yes I have to say we now) in the oncology world like to say. We want "boring" because that means things haven't gotten "worse." But Friday and Saturday were pretty "good" all things considered..

We had a visit from Bags of Fun KC on Friday which is an AWESOME organization! And they brought an awesome bag for Cole! Check them out at http://bagsoffunkansascity.org. The particular donors who donated funds for Cole's "bag of fun" even came along for the visit, which doesn't happen too often. Cole's bag was funded by the BMA Foundation (bmafoundation.org) started by Jerry and MaryEllen Anselmo who started the foundation after they lost their son, Brian. Brian was an athlete like Cole, and went to Mizzou, then later went on to farming. Like Jerry told us when they visited, there are angels out there and them being matched with Cole was meant to be. We agree, Jerry. Jerry and MaryEllen were the sweetest older couple, and Louisa from BOF KC was great.. we are so incredibly grateful for the generosity and passion for kids with cancer that so many people have. Of course I cried, but it just continues to amaze me how incredible and giving so many people and organizations are to oncology kids. It's bittersweet I guess you could say.. Tears of happiness to see these amazing things for my baby, but sad that he even qualifies for such things.

Saturday was pretty good for Cole most of the day. We watched movies and even played Mad Libs which brought some smiles and even giggles from that sweet face. It so warmed my heart to see and hear. Unfortunately, we've had several days of nausea and vomiting, they are thinking from the change in his feeds as he shouldn't feel this way from the particular chemo he got last week. So we're adjusting things for that.

Yesterday we finally read a book and had the conversation about chemo...and side effects, namely hair loss. As we hoped, it triggered a few questions and conversation. Of course he cried (as did I when I walked away), but was tired and ready to sleep. One thing he said was that he doesn't want any visitors to see him bald..so we discussed that. We'll work through it. The timing yesterday was good as it turns out....because last night I found a few hairs on his skin and today I found more, and even had some come out in my fingers when I rubbed his hair. 🙁 We talked a bit more about it this morning and it will just take time. Seeing other kids around here will help him, and he agreed. He asked me if any of my football players are bald, and I said YES, they are! He asked if they let their hair grow back and I said some of them do, but some of them don't as they want to be bald all the time. I think it's good for him to hear/see that some athletes are bald too. 🙂 I've tried to prepare for this whole hair loss part, but this is HARD.

Our doctor came by today and said that she has not heard back from the outside pathologists yet regarding a diagnoses and that they wanted even more slides last week because they are all still having such difficulty diagnosing. Regardless, she will get SOME kind of information today. We are fortunate that our doctor is very tenacious. She annoys everyone, in a good way, so that she gets things done. I call her "passionate," like myself. 😃 She makes calls herself and goes to see people in person. She is fighting to make Cole a priority at these places for review of his case.

While she expects to get some kind of information today, regardless, Cole will get a different chemo regimen tomorrow. Because his body is now more "stable" like she wanted ("stable" is subjective), he can start a more aggressive chemo recipe, much more aggressive. For now she will lean towards treating it like the PPB cancer (mentioned in my previous post).  So she said we will start seeing additional side effects as well such as mouth sores, fatigue, nausea, he'll look "puny," and some other things.

So this is going to be a TOUGH week. A very tough week.  Our hearts will break watching this, we will cry, we will be frustrated, we will feel helpless with the things we can't fix... BUT, we are ready to keep FIGHTING...so LET'S GO 💪🏼