Darek's Cancer Journey

$6,885 of $10,000 goal

Raised by 77 people in 38 months
Wow...This is hard to write! You never dream in a million years that this would happen to you and your family. It's always somebody else, right? Until it's not...
Darek's cancer journey began unexpectedly and without symptoms at the end of January when a CT scan showed a mass in his brain. After surgery in February to
11239467_1462652582.4905_funddescription remove the tumor, we found out that he would begin 8 rounds of chemo- each round lasting 6 weeks. He has had a port and a feeding tube implanted and we now travel two hours away every other Monday for chemotherapy because getting chemo locally was not an option. Some appointments require overnight stays either before or after treatment. We will have additional trips for MRI's and physician follow-ups throughout the course of treatment. In the four treatments he has had so far, he has been very sick. The Drs and staff at the hospital are puzzled by how hard it has been to control his side effects. We have had multiple visits to the ER and one additional admit to the hospital for observation, so far. We have promised Darek that we are in this together and we will be by his side to support him during each treatment/MRI/follow-up/test/etc. With that being said, it has taken us away from our jobs. We have used all of our vacation and sick time and are currently taking intermittent unpaid leave through FLMA in order to be with him at all appointments and treatments.
It's difficult to ask but, we finally have admitted we need help. We have been so blessed by all the prayers, meals and help with Dylan.
Words cannot begin to express our gratitude for all the love and support we have received. Please know that when this fight is won...and we will win...we will pay this forward every opportunity we get!
Life if short...hug your kids...tell them how much you love them and how proud you are of them!
And most of all...keep praying!

Most Sincerely and With Love,
Lloyd, Alison, Darek and Dylan Diamond
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Tomorrow is our second '3 month scan' and the anxiety they talk about (Scanxiety) has set in! The last three months has completely flown by and we wonder what has happened to our summer and we wonder if the Chemo is working??? It's been three months filled with lots of anger and tears. We continue to be amazed that Darek is handling all this like a trooper (which is more than we can say about the rest of us!) His first ambulance ride to St Louis was traumatic. The port access is still so scary...and the nausea and vomiting is still not controlled...He pleads with God to make the it stop...that is what is so gut-wrenching. No 8yr old boy should be having these conversations with God. He always looks at me and says 'Mommy, are you crying again?' ...who me??? No way!!! His behavior has changed....Almost as quickly as it changed immediately following his surgery, it has reverted back....it's hard to watch. I can tell you without one bit of hesitation...disciplining a child that is sick is excruciating! You want to take it all away and when you can't, you want to make things easier, more comfortable. Hell, I'd do back flips if I thought it would help! One think we can't do is not hold him accountable for his choices-good or bad! There have been a lot of bad choices lately. We wonder if it's out of anger about this situation? We wonder if these changes could indicate that there has been a change with his tumor? Is the chemo working? Is it not? So many questions...not sure how to feel if there is a change on this scan...it could mean the start of a trial...a trial that could cause other issues, as well. How do you weigh the good and the bad and choose between them quickly and be completely educated about what you are doing to your son!
Our days at home feel like 'in-between days'. We seem to get a few uneventful days 'in-between' a chemo day or a sick day or an ER visit or an ambulance ride. Never really long enough to catch up on anything...just long enough to realize how much you missed being there...how nice it would be to have the suitcases put away until an actual vacation!
So as I finish typing this, I have the pleasure of watching my boys have the time of the life riding all the rides at the fair, running around, laughing and just being boys...being brothers...the way it should be...without a care in the world about chemo or cancer. Tonight, we enjoy each other. Tomorrow we continue the fight.
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It almost feels like we woke up from a bad dream! In fact, we didn't but, we have had a little reprieve or vacation from this 'beast' we are fighting! Darek's last chemo had to be changed to the Friday before Memorial Day since they don't have clinic on holidays. The day before, Darek asked to stop chemo. He got really upset (as we all do) and declared that he wanted to talk to his Drs and tell them he didn't want to do this anymore! The drive up was filled with fear and lots of tears. Little did we know that it would be his easiest treatment, thus far! That was his 6th treatment but, it was his FIRST treatment that he didn't get sick AT ALL!!! We couldn't believe it! Did he really just get chemo and he's NOT sick? SERIOUSLY???
THANK GOD!!! As of today, we have gone almost 25 days without getting sick...no nausea...no vomiting...no fever...no ER...no hospital admission! Now that is what I call progress!
So today, I sit here packing for our return to St Louis and the anxiety starts to creep in even stronger! What will happen tomorrow? Will he get sick? I'm waiting for Darek to realize that tomorrow is chemo. I'm trying to keep his mind off of it...don't want to make himself sick worrying about and thinking about it until tomorrow. Our schedule tomorrow is going to be a tough one. We have three follow up appts. The ENT wants to scope him (while awake) to check his paralyzed vocal chord. The surgeon that placed the port and feeding tube wants to replace the Mic-Key Button. Then the psychologist wants to talk. (Can We just talk with her all day??? Please!!!).
Please pray that tomorrow goes smoothly especially as we face our first 'three month scan' and team meeting next week! (22nd and 23rd) TALK ABOUT NERVOUS!
Again, We thank you for all your thoughts, prayers and support. We know who is in control! Keep praying, y'all!

Most sincerely and with love,
Lloyd, Alison, Darek and Dylan Diamond
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What an eventful week! After receiving his 5th treatment on Monday, he was so sick on Tuesday. By 6pm Tues, the vomiting hadn't stopped, he was getting dehydrated and he spiked a fever. We called our oncologist on-call and they sent us to our local ER. Around midnight, it looked like we were going to be released. Upon waking him up to go home, the vomiting proceeded, as well! At that point the dr admitted him. We stayed Wednesday night, too, and finally came home Thursday night around 7pm. What a wonderful thing for all 4 of us to be home TOGETHER for the first time all week...and boy did it feel like a long week! The blood cultures came back today and all were negative... That is good news! Next chemo...a week from today. Hoping and praying for some good days in between! One day at a time...one moment at a time . We know that your prayers are getting us through!
Much love,
Alison, Lloyd, Darek and Dylan
Sleeping with his fingers intertwined...
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We are on our way for chemo #5! I'm noticing our anxiety level increasing dramatically the weekend before treatment. We have all broken down this weekend. Darek has cried a couple of times saying that he doesn't want to get sick anymore. He cried, I cried...but, I kept telling him how proud I am of him for being so brave. He truly is my hero. So today, when we got in the car...he said, 'mommy, I'm gonna be brave today!'
...I always knew he would. He's amazing!
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Brenda Harper
38 months ago
1
1

So very, very sorry. Our prayers are with you and Darek. My husband had brain cancer and we were told to get Right Choice insurance for high risk patients. It covered about 75% of all costs. Rob Rueslers office helped with the forms.

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$6,885 of $10,000 goal

Raised by 77 people in 38 months
Created May 7, 2016
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Bethany Kirchhoff
33 months ago
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Continued prayers for Darek ❤️

Brenda Harper
38 months ago
1
1

So very, very sorry. Our prayers are with you and Darek. My husband had brain cancer and we were told to get Right Choice insurance for high risk patients. It covered about 75% of all costs. Rob Rueslers office helped with the forms.

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