August 25, 2016 🔹Update & News

Our procedures Tuesday went well - successfully removed the PICC line from the arm and got our new port in the chest. We've had some ups and downs with how we've been feeling with soreness, pain, and such, but all in all things have been pretty "good."

The biggest thing we were combatting the past several days which is better now is excruciating bone pain, especially in the back and legs. With the nightly shots Cole had to take while neutropenic, his body was working in overdrive to produce more white cells, etc. so his bones were hurting....bad. We were able to add some morphine on top of our regular pain meds to get some relief at least.

With sore bones and muscles Cole is pretty wobbly when he tries to walk, but he pushes through. We're working on physical therapy every day, but it will just take time. He is so strong and strong-willed which is paying off. :-) His body is just....weak.

Today we started our 5 day mega chemo. With the new heavy duty nausea medication on board that we started the last time, he was able to make it though the day without feeling too sick. This was great to see. However, we did have a few moments of heavy medication which caused him to see blurry and his body "didn't feel right." He just looked "drugged up" basically. At one point he asked why there were two of me. Whoa 😳 The doctors seemed to think it was from the dosage of pain meds along with his regular meds and the chemo, etc. So they adjusted his pain medication which seemed to help.

We did get some surprisingly good news today though! Our doctor had shared that our goal was to possibly go home late next week or weekend. But the discharge nurse came by today and told us that she is preparing things for us to aim for going home on Tuesday! Yahoo! If all goes well with the chemo and he's on the road to recovery, we'll have to continue recovery, medications, shots, etc. at home...but we would be at HOME!

With day 5 of the chemo being Monday that only allows for about 24 hours of recovery at the hospital so depending on how his labs are and if he's stable enough, we'll see if we get to go Tuesday. We'll still have to go to the hospital/clinic at least twice per week or more for some labs, treatment, possible blood and/or platelet transfusions and whatever else he'll need. But we are ok with all of the travel if it means we are spending most nights in our own beds. As long as Cole stays stable of course.

There is a lot to prepare for to go home. It was very difficult for the hospital to find a place or nurses in our area that are familiar with pediatric ports, labs and care. She called a dozen places for us. There just aren't many requests for pediatric care around here. We'll be able to use Visiting Nurses to come to the house to do his labs from his port. This will hopefully save us some trips of driving back downtown for labs and not knowing if his labs/counts will be good enough to do his chemo. Depending on how his body responds each week and if he gets fevers, we won't know how many additional trips we'll have to make. The same standard protocol as before regarding fevers is that we are supposed to go to the emergency room with a fever. Local ER's just won't be sufficient as many don't have familiarity with pediatric PICC lines and ports which is why we had to drive downtown for our last ER trip. Additionally, to be honest, with the lack of familiarity with pediatric ports, etc. and not knowing what we could be exposed to in ER's, we'd feel more comfortable just going back to the children's hospital anyway. We didn't realize how many hospitals aren't familiar and/or trained in this area. Also, they said that many times ER's aren't used to parents being as knowledgable as HEMOC parents are. Because we have to be! So often they don't necessarily listen much to parents regarding their child's status/health. This is just the reality. It is what it is. So we'll do whatever we need to do and go wherever we need to go.

So we need to get things ready! We'll need to do a rush job to clean, disinfect and prepare the house, but we are highly motivated. Last Friday we had to start taking shifts with staying at the house to take care of the house and pets so one of us stays at the hospital and one of us stays at the house each night. It's been different splitting up, but we make sure we communicate with updates and we're getting other things done that need to be done. I've been working a lot more and Steve will start working a lot more in the next week or two. It's been working well so far.

We are excited to come home but yet a little nervous. Without the constant monitoring of vitals and such we will have to gauge how he's doing based on how he looks and tells us he feels. We are a bit concerned with the oxygen and not being able to monitor it, but we'll work though it all. We'll just be watching things like hawks! We are also excited to work toward being able to start school...finally! We don't know when that will be yet, but Cole's school has been/is AMAZING, of course! We feel so incredibly blessed that he is/we are part of such a wonderful, supportive community.

So I'll end things on positive notes...We had progress on our last scan last week AND coming home is finally in sight! Praise Him!!

P.S. Many people have inquired about the availability of TeamCole gear and we are happy to share that we DO still have shirts and wristbands! I created a new email so please contact us at [email protected]  

We have youth shirts and wristbands (many adults can wear a youth band too).    Sharon Farris has been so wonderful in coordinating the orders and she is helping with ordering/delivery. We can't thank her enough!

It's been so incredibly AWESOME to see all of the AMAZING support, both near and far. THANK YOU ALL FOR THE CONTINUED THOUGHTS, PRAYERS AND SUPPORT. We appreciate YOU!

#TeamCole🎗