- September 22, 2018 at 3:43 am
Hi there:) I just want to post some happy stuff even though we are in the hard place. This board just makes all the difference. I am the quiet reader most of the time and Jake is pretty private so I try to respect that.
But the odds of Jake from Utah and Brian P from North Carolina being in California and meeting for a visit are just too slim to be a coincidence. Jakes first talk with anyone really. Brian was great and Jake got motivated!! He is ready to start a trial with Dr Hamid in LA and seeing if he is eligible for Brian’s trial in Houston! Brian helped get the doctor on board.
The wreched beast has made its way to Jakes heart, brain, bladder, bowels, bones, muscles….but Jake is okay:) He feels pretty good despite the SRS, terrible biopsy through his entire torso yesterday and the constant travel. We got this.
Many thoughts and prayers…that means you Celeste! The board changes lives. It’s changed ours. We got this!!
With gratitude for you all here, truly,
- September 22, 2018 at 4:22 am
Hi Kerri, I love your picture. I can't imagine how hard it must be to watch your child go through this. My husband is the patient. I will pray for you and your sweet son. You have an amazing attitude and your son is so lucky to have you. Sending love and positive vibes your way.
- September 22, 2018 at 4:02 pm
I truly do believe that Jake and Brian meeting was much more than a coincidence. I believe in fate whole heartedly. I am glad to hear that the meeting has helped Jake. I think having someone who knows exactly how you feel has to only help, especially for someone as young as Jake.
My son is 17…and we have have recently been thrown into this melanoma world and it’s been overwhelming. My son also is very quiet and does not talk about it much…I have often thought about trying to find someone in a similar situation for my son to talk to but I’m not sure how receptive he would be just yet.
My prayers are with Jake and you and your family. As a mom I know how hard this is…these treatments and frequent doctor visits are not something I ever thought I would be doing with my 17 year old child. I am supposed to be worrying about his freshman year in college, is he adjusting well, is he eating ok, does he miss home..etc…instead I go to bed at night worrying about his treatments, the potential side effects, his next set of scans….
I wish you the best of luck with the trial and I will be praying!!!!! There is strength in numbers and I can’t imagine going through this alone. You are right this board is amazing…and it does change lives. It also changed mine.
- September 22, 2018 at 11:10 pm
I really really want to take a few minutes and text, talk, whatever!! We have done this from 17-21. Suuuuper grateful Jake has been able to have these years given the aggressive disease but also suuuuper tough to still be at it! We need to connect for sure!!
Thank you for reaching out, prayers, and the support. I am here for you as well and want to know how/what you guys are doing!! Love and prayers to you and your boy!!
- September 23, 2018 at 2:45 pm
Kerri..I would love to speak to you as well!!!! Having another mom to vent to, who definitely understands would be amazing!!!! My email is [email protected]…that’s the email I use the most…please when you have a moment of time feel free to reach out. We can get more contact info then.
Hope to hear from you soon!!!!
- September 22, 2018 at 7:16 pm
Kerri I think about you and Jake all the time and have seem some pictures on Instagram of your beautiful family ( seriously…like you are all gorgeous). My heart breaks for you and it is just so unfair jake is going through this, but I really feel like your positive attitudes will make a difference. And I’m happy Jake still feels well despite it all. Youth is on his side and he can beat this!
and Kelli…my son was in college when he was diagnosed ( he is doing fine 9 years later) but I remember how hard it was because he didn’t want to talk about it especially to his parents . I don’t know if he had friends he talked to but probably not…typical young guy…but as a parent it was so difficult to know the “right way” to help.
keep on fighting everyone!
- September 22, 2018 at 11:31 pm
Thanks:) You are so right about the age being difficult. We walk on eggshells so often as moms in this one! Mine truly never talks about it. When we have to he is not nice about it. He just wants to be normal so so so bad. He does a darn good job at it too! But really, he has nothing close to a normal life. Nothing. No college, no girls, no apartment, way too much time with mom, hospitals, lumps, bad news, treatments, hard decisions, deciding if it’s all worth it….hoping for a longer lasting combo this time! What worked for your son for 9 years? So so happy yours is doing well after that long! Blessing!! I love good stories:)
Thank you again,
- September 23, 2018 at 2:05 am
I remember when my son was first diagnosed, he was getting ready to go back to college. He ended up having to take the semester off, move home ,away from his friends and his fun, normal college life..I think that was the only time I saw him show emotion about the whole thing. It was so hard to see his disappointment. In the meantime, I was a wreck but didnt want to know how scared I was.
His only treatment, besides the sugeries, was interferon for a year. At the time that was all that was offered. He had scans every 4 months, then every six months, then once a year…when he turned 26 and went off our insurance he was not as proactive about getting things checked as I would have liked. But…he is an adult so not much I can do!
His melanoma was such a weird fluke that surprised the doctors and us…had a bump on the tip of his tongue that was biopsied and came back as melanoma ( 3 pathologists took a look since it was so unusual). It had spread to his lymph nodes but thankfully not beyond that.
Keep us posted on how things go..there are a lot of people here who care
- September 23, 2018 at 2:54 pm
Yes it is very hard as his mom…you just want to fix it and make it better. And this you can’t fix….and it really really sucks..I dont know any other way to say it then that.
We are very lucky, my son is in college, and he is living as normal a life as possible at the moment….with a lot of doctor appointments and bi weekly treatments…and I am so grateful for that.
Hesrung stories like your sons gives me hope and the strength to keep pushing ahead so thank you!!! It means more than you know!!
Hi Kerry, im Mike nice to meet you, under our circumstances anyways! Im just amazed at how young your boy is having Melanoma! If im not mistaken, it usually takes well into our 40’s 50’s even 60’s to take effect from what iv gathered..
- September 23, 2018 at 12:12 am
I to am at war with the beast, stage 4, both lungs, primary was left leg way back to 2008 (lovely journey huh?)
If im not mistaken, isnt the Brian that your mentioning the Marine we all saw on StandUpToCancer show on TV the other week? Boy, to meet up with him was fate, i hope it adds “fuel” to your boys Fight Tank! And to add, i just may be seeing this Dr. Hamid guy in LA, and Dr Rodriguez at Kaiser Sunset, its just down the 405fwy from me. My treatment has been halted due to desease progression “Again” and a “change” is in My cards!.. Love & Strength to your Jake, he can & WILL pull through! Especially with YOU in the drivers seat…
- September 23, 2018 at 12:49 am
So happy to hear Jake is motivated. Can't imagine what it would be like to be dealing with everything he's had to deal with at his age. I really enjoyed meeting him. I'm thinking and praying for him often. I'll email you soon Kerri.
Hi Brian, i can be a little slow @ times, and this is one of em’! I had no idea you where one of us here at MRF!
- September 23, 2018 at 3:29 pm
Im glad to hear you made an impact on our little brother Jake, sounded like he needed a Boost right about now! Glad you two crossed paths!.. Look for a message Brian, im gunna write you off the Melanoma path, military stuff…take care bro…
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