August 7th

August 7, 2017

 

 

I am so sorry it has taken this long for me to get an update up. I try to keep up on it, but when the end of the days come I just can’t find the energy to actually do it majority of the time.

Since, the last update Evie had to go back to the PICU for a few days due to more fluid build up in her abdomen. She has had to be drained another 2 times, each over 1.5 liters of fluid they remove. It is a constant battle keeping her body hydrated enough, but not too much fluid overload that it builds up in her abdomen.

 

Thankfully, we were able to get back to regular pediatrics floor last week. The rooms are much more comfortable and Evie gets to be bothered a little less than when she is in the PICU. Her biopsy of her small bowel last week showed no signs of rejection. That is great news! Her blood sugars have also came down to normal so much that she has hardly needed insulin, but still has to get poked for the checks 3 times a day. She has some really good days with lots of playing and giggles. It was definitely nice to see her start to get back to her normal self. Unfortunately, it never seems to last very long because of other issues that come up causing pain or discomfort for her.

 

In the middle of the week last week doctors notified us that her AFP count in her blood had went up from around 500 to 1400 in under a week. Because of this they really wanted to start chemotherapy as soon as possible, rather than wait. After, her results came back good from her biopsy and all her other counts seemed only getting better, they thought Friday would be go day for chemo.

As anxious as I was for her to start chemo to get all that poison out of her once and for all, it also brings a whole lot of fear seeing as this time it is such unknown territory with news organs and different chemotherapy drug regimen. Evie is already immune suppressed from the transplant and now add in chemo! The doctors are religiously watching every little thing every day to do with her body. There are so many factors to keep an eye on, I always have to be on my toes. They are a great team, but people make mistakes and all it would take is a little mistake to turn extremely dangerous for my Evie. One thing I have learned being an advocate for a sick little one is to always keep pushing, especially if your Mommy instincts are telling you something. I have found that most in the medical field want to jump to the most common solution to a possible issue, instead of covering all ends of the spectrum even the most rare possibility. Yes, you pray it is not the worst possible thing it could be, but being prepared and being on the precautious side of things is so important. As a Mommy advocate you learn a lot in the medical side of things very quickly, all the verbiage, the tests, what levels should be, etc. I start to feel like I have some type of medical degree as well. Ha!

Anyways, overall Evie has been handling the chemo very well. Nasuea control and pain control are one of the challenges. Every day is new challenge and battle to face head on and get past. Evie inspires me to keep my strength for her every single day. She is so smart and brave, and I get to be this little angels Mommy forever!

 

We love visitors! But, with Evie starting chemo and pain escalation sometimes it is just too hard for her to have people in the room and I would hate for people to waste a trip all the way over here, so if you have a day in mind you would like to visit please text or message me ahead of time and we can see if we can work something out for you and EvieJ

 

My amazing friend Emily Moses has single handedly been beyond helpful. She has teamed with so many great people to put a fundraiser on for Evie on August 24th! Make sure you check it out, lots of fun and goodies will be there!

Not only that but local restaurants Whiskey Road and Urban Pie also have benefits running for Evie Mae. Make sure you keep updated on the benefits and save your dates through Evie’s facebook page!

The Cedar Valley community is full of such amazing people! Thank you all so much! All of the continuous support truly touches my heart.

 

 

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