Monday, February 19, 2018

#PrepWithPurpose: Sydney's Final Days

For backstory on what #PrepWithPurpose is all about please read the blog entry and/or Instagram Post.

Hey Friends,

I did do a PREP WITH PURPOSE last week ... I just forgot to make it LIVE!

No point in me making it LIVE now. But it was for everyone dealing with the most recent mass shooting in Florida. All of the victims, the families, the school and the entire community. They still need lots of prayers so lets not stop! Being in a town that had a mass shooting .. I saw first hand how people POUR out all the love for the days and weeks following .. but then it soon becomes a distant memory unless you were directly involved (I live here and am JUST as guilty of this.) 

Moving on to THIS weeks PREP WITH PURPOSE. We will be lifting up and for a young girl that has been fighting cancer for three years and is now in what appears to be her final days.
Her name is SYDNEY.

Monday morning I got a FB alert from a page I follow (another little girl that had cancer that was featured in the past) and knew instantly this little girl needs to be who we are lifting up and for this week. Not to mention, my first show of 2018 will be the St. Louis Pro and St. Louis is where this little girl and her family live.

In situations where I do not know the person we are lifting up and for (usually the case) ... it's best for me to just "copy and paste" their story from one of their social or donation pages so I don't miss any details. 

Here is SYDNEY'S backstory and where she is today ..... 

Sydney was diagnosed with a Stage 4 Favorable Wilms' tumor on March 1, 2015 at Mercy Hospital, St. Louis. The next day, she was taken to surgery to have her right kidney, adrenal gland and lymph nodes removed. On March 5th, she was transferred to Cardinal Glennon because her other kidney had failed and the doctors believed that she needed to start dialysis. 

Once at Cardinal Glennon, the doctors gave her kidneys a few days to start responding on their own again, which they did, and so we didn't have to start dialysis. She was transferred back to Mercy for a few days, and then released.

Sydney started chemo and radiation, and was doing very well with her treatments, but had a severe allergic reaction to one of the drugs given to help protect her organs from the radiation and she went into anaphalyctic shock and was put in PICU, and was intubated at Mercy, where we were told to prepare for the worst.

She was in the PICU for 8 days before they realized that she was also septic because of an infection in her port. Her port was removed and Sydney immediately started recovering. We were told during the first week of June, after scans that there was NED, but that we would complete the treatments that were already planned.

At the end of June, Sydney was readmitted to Mercy with abdominal pain and scans revealed that a new tumor had grown on her bladder and bowels. The new tumor was removed, and a new treatment plan was set. Sydney would have to have at least 5 rounds of a new chemo, and then she would be admitted for stem cell transplant at Children's hospital.

October 19th,  Sydney had her stem cell transplant, with few complications, and was released from the hospital on November 13, 2015. Following the stem cell transplant she was only hospitalized for pneumonia. 

Fast foward to 7/14/2017 - They found out that Sydney has a new tumor on her liver. Surgery to remove it and place a new port was scheduled for  7/17/1.

From then until February 14, 2018. I'm not sure what happened. There were not any updates that I see. But on 2/14/2018 ... it appears she went back into the hospital ... and from what I'm gathering she will not be coming "home". 

UPDATE 2/14/2018
Sydney’s pain is now a 10. She asked me to call Dr. Rob because she just can’t handle the pain anymore. She never wants me to call Dr. Rob because she doesn’t want to have to go to the hospital. He has explained that when her body needs the pain meds, that it’s very unlikely that she’s going to all of a sudden not need it and start having respiratory distress, and as much as I trust that man, this scares me to death. We are upping her morphine to 60mg three times a day, and her oxy to 3 an hour as needed. If we are still chasing the pain tomorrow, we will take her in and she will be accessed and placed on a PCA pump, that we are able to come home with. He fears that the tumor has progressed dramatically and that this is just the beginning. We knew this time was going to come. It doesn’t make it any easier. Please pray! Pray for Sydney’s pain to be relieved and for her to be at peace with this. Pray for our other kids who have to watch this happen. Pray for Matt and I because our hearts are being shattered right before our eyes. Thank you in advance for any donations, prayers and good vibes. 

UPDATE 2/16/2018
As hard as this is to write, I’ve always updated this page with Sydney’s health. Sydney started getting dizzy and having shortness of breath last night before the nurse got there with the pain pump. Nurse Shelley assessed  her and her O2 stats were low. She called Dr. Rob who said that he believed her O2 stats were most likely low because it hurt her to breathe and so she wasn’t taking deep breaths. Shelly got her pain controlled, but later I noticed her O2 stats and when I talked to Dr. Rob he had me bring her in to ER. On the way, Sydney became unresponsive. She wouldn’t not wake up and her pulse was faint. When we got to the ER, we were met at the door  by Mat and Lillie who grabbed her
and ran her into the hospital. She was given narcan and she came back to. A chest X-ray was done, which showed that her right lung is full of fluid caused by tumors. We have a couple options. None are easy decisions to make, and neither give us much time left with Sydney, a difference of a few days to possibly a couple weeks. Sydney is now in the PICU and is resting. I can’t say comfortably, but she’s resting. Please understand that we have a lot of very hard decisions to make, and we are goin to need time to process all of this and won’t be answering every call, text or FB message. We love you all but our focus HAS to be on Sydney and what is best for her. We will be accepting a few visitors, depending on how she is feeling, if you ask and we don’t respond, please know that we are trying to give FAMILY the first chances to see her. Please pray fod Sydney. Pray for comfort, and pray for her heart. Pray for my other kids as they come to the realization that their sister is never coming home. And pray for Matt and I because we are about to make the hardest decisions in our lives. 

UPDATE 2/18/2018
I’m sure you have all seen the photos of Sydney today, of her smiling and laughing, and being a kid...and you are just as confused as we were. Sydney has had a pretty darn amazing day, and we are thankful for that!! We posted yesterday that Sydney’s time is near, and that hasn’t changed.
Cancer is confusing. As much as I want to say it has, the harsh reality is that Sydney will be with Jesus much too soon. When we woke up this morning, she was bright eyed and ready to start her day! Yesterday she couldn’t get enough oxygen and was on 15 liters of force air, and today she has not required the added oxygen! We took the nasal cannula off about 10 am just to see what would happen, and her stats stayed great! Who would have thought? For almost 4 months, Sydney has required high doses of pain medication just to get through her normal activities every day, as of right now, she hasn’t had ANY pain meds since 4 am Friday morning! Who would have thought? We sure didn’t, but Dr. Rob did.  What he believes has happened to increase her O2 stats is that her right lung finally filled up with fluid and has collapsed. This would make it to where her little lungs weren’t working so hard to try to get thru all that fluid, because  your body is a miraculous thing. When one lung quit, the other one took over and she could breathe again. So that explains the oxygen part, but what about the pain? Dr Rob thinks that maybe her tumor, that was so large and pushing against her organs, causing pain...has ruptured. He said that would cause the pain to be gone because there is no more pressure pushing her organs causing pain. Hence not needing any pain meds. 
We wish that that we could say that she received her miracle, but I’m afraid that just isn’t the case. Sydney’s lung cannot Support her for a long period of time. It’s working too hard and it will give out. We don’t know when, but we know it is going to happen. Until then, we hope to have more “good days!” It is really hard watching her look so healthy, when you know what is coming, but we will take it! We will cherish what time we have left, and we will take every second left to let our baby girl know how much we love her! Tonight she is resting comfortably and  Again, I’m VERY thankful for that. Please continue to pray for Sydney. Pray that she stays pain free and that when her time is here, that she can leave this world and go home to be with Jesus peacefully. Pray for our other children, that they find some sort of comfort in knowing that she will no longer be in pain and that she will be walking streets of Gold. Pray for Matt, because his heart is shattered and he wants to stay strong for the rest of us. And pray for this mama’s heart. 


I hope you read all of that. Especially the last update. Her mothers words are beyond heartbreaking.
I can't wrap my head around the feeling of knowing your baby is dying. She is only 8 years old?! NOT FAIR is an understatement. She should be full of energy and LIFE.

I have energy. I have LIFE. I will not take that for granted. 

I am just under 6 weeks out from my first competition. Things are about to be in HIGH gear and I'm sure at times it will get "uncomfortable". But with every rep and every stride I take this week I will be thanking God for working limbs and the oxygen that fills my lungs. I will not complain about having to get in my HIIT or being too exhausted to hit the gym to train at night.

I will be grateful that I AM ABLE and all the while (and most important) I will be sending up BIG PRAYERS for this ANGEL fighting this horrible DEMON named well as her heartbroken friends and family.

I hope you join me in lifting up and for sweet Sydney! If you decide to post something on socials, feel free to share this blog link and please use the hashtag #SydneysSoldiers. That is the hashtag I am seeing them use. 

Also, as always, I can not vouch for this families financial needs as I do not know them. But if you want to donate they do have a GO FUND ME type page. That is also where most of her updates are being posted ... as well as her moms FACEBOOK PAGE.


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