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Teaming Up for Thomas Jay

$11,595 of $20,000 goal

Raised by 174 people in 10 months
Created October 3, 2018
Fundraising Team
on behalf of Amy Velez
If you're blessed to know the Velez family, you likely already know why this page was created, but allow me to share the story.

This beautiful family of six had their world rocked and faith tested when sweet Thomas was suddenly admitted to the hospital and doctors discovered a brain mass. Eighteen years young, just starting his senior year of high school, one of the sweetest most gentle boys you'll ever meet. A mysterious, rapidly growing lump in his brain pushing on his optic nerve turned his world upside down. Terrifying doesn't even begin to describe it. 

Thankfully, after two brain surgeries, a multitude of testing, and hours of patient prayers, the diagnosis came out that the mass was benign. A germinoma grew quickly and we're all incredibly thankful to have avoided the worst. The doctors have created a treatment plan that will involve both chemotherapy and radiation. The intracranial germinoma is a highly treatable form of cancer, very sensitive to chemo and radiation. We're unsure of its specific nature as being purely benign. It has damaged the surrounding tissues (optic nerves, pituitary, hypothalamus, etc) and we are hopeful it will not spread. This tumor has found a localized, temporary home in his pituitary and optic nerves, but doctors are hopeful treatment can dissolve it.

Thomas has a long road of recovery ahead, and our first and foremost request is for friends, family, and strangers to continue praying for healing. Keep sharing only positive thoughts and kind words. Pray for Thomas to come out of this healthy and happy so he can get back to being a kid for a little while longer. We stand firmly on faith that Thomas's eyesight will be restored and he will respond positively to treatment.

Secondary to that, I know that friend after friend has repeatedly asked if there's a way they can help the Velez family. They are gracious people and counting their blessings with a benign diagnosis. If you know them, you know they would never ask for money. But I am on their behalf. This is how you can help. Two brain surgeries, countless tests, over two weeks in the hospital and ICU, upcoming chemo and radiation treatments - even with insurance, those bills will come in and pile up. 

Please consider donating any amount to help the Velez family and Thomas Jay. Help relieve the stress of the medical bills that will undoubtedly come. Give them the opportunity to focus on Thomas. This family gives their heart to everyone they know. It's time we give back.

Thank you for your kindness and generosity. 



Photo Credit: Angela Callisto
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Thomas’s endocrine system continues to fluctuate. It’s been up and down as his body has started to heal from the radiation. I have to admit, it’s been scary at times. Thomas’s adrenal insufficiency and diabetes insipidus have the continued potential to be life threatening, so we continue to closely monitor it and balance with medications. We’ve also discussed starting human growth hormone and testosterone with his endocrinologist but will wait until after the next MRI before we start the administering of those meds.

Doctor appointment after doctor appointment, sitting in waiting room after waiting room. I organize. I educate. I question. I advocate. I hold his hand. I encourage him even though the road ahead is long and sometimes seems scary. And just like on day one of treatment, we begin this healing journey by choosing to *pray anyway, by choosing to *hope anyway, by choosing to *LOVE anyway. So on the day we celebrated love- this past Valentine’s Day- it seemed so appropriate to be at the appointments that will help guide the journey back to wellness.

Matthew continues to be Thomas’s aide during the day, caring for his needs. Thomas continues to need 24-7 monitoring. Having only one parent working has taken a juggling act, but we have been doing well at balancing it all. Thomas also has been pressing through his in-home instruction and lessons, with the help of his teachers, occupational therapist and Matthew. It’s truly going to take a village to get him back to wellness.

Thank you for your continued support, encouragement, and prayers. Sending you all lots of love.



#teamingupforThomas #effcancer #ThomasJayStrong #seethegood #hoperises #wegotthis #loveanyway #gratefulheart #advocatelikeamother #myboy
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I’ve tried writing this update a half dozen times. And each time I’ve tried, my eyes fill so high with tears that I can’t even see the keyboard. The high level of deeply stirring emotions just has overtaken me when I allow myself to *really* feel it... but it’s an update that I am *so grateful* to share, so bear with me as I try to articulate it the best my churning heart can...

This past week Thursday, Matthew took Thomas to radiation. Dr. Prasad, Thomas’s Radiation Oncologist, met with them after the treatment. He informed them that Thomas had only four more treatments left. Stunned, they both asked for clarification, as we all were led to believe that Thomas would have to go every weekday until February 28th. Dr. Prasad examined Thomas’s chart again, smiled and confirmed it with certainty. Prasad had prescribed two doses per appointment. And so, Thomas will be done with all radiation as of Wednesday, February 6th. (*cue my tears* *deep breath*)

The treatment phase will end and the healing will *finally* begin.

The healing.

From brain cancer.

The healing begins Thursday, February 7th, 2019.

Reading those words, they wash over me, like rain after a drought. My aching mama heart, our family dynamic, and most importantly- my son’s body and soul will finally be allowed to drink in the peace we’ve so long been thirsty for... glory to God!

We ask for continued prayers. The healing is the longest and most important part of this journey. Thomas’s endocrine system and vision has a ways to go, but we continue to have hope for both to return.

Thank you SO MUCH for the prayers and support you continue to offer us!





#ThomasJayStrong #teamingupforThomas #gratefulheart #powerfulprayers #seethegood #effcancer #hoperises #healingbegins #myboy
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Thomas is within his second week of daily radiation. Radiation treatments had been going well, at least we thought they were, until Thomas’s side effects started to rear their ugly heads. Well, to be specific, the difficulty mostly lies in how the side effects of treatment itself melds into his side effects of the after-math of Thomas’s cancer.

*I post tonight, to both update everyone but also ask for continued prayers for his healing.*

The past few days have been a little rough.

Thomas’s germinoma tumors were growing on top of the pituitary, hypothalamus, and optic nerves. Between the tumors themselves and then the two surgeries, the endocrine glands became quite disrupted. (Well, in actuality, they became really pissed and started shutting down some of their functions.) The tumors placed pressure and stress on those endocrine glands, and because those two endocrine glands in particular are considered the master power-centers of the body, telling other endocrine glands how and when to function, Thomas’s adrenal glands lost the ability to regulate the stress response and maintain water balance. The adrenal glands control key functions in the body: act in anti-inflammatory responses; maintain blood sugar levels, blood pressure, and muscle strength; and regulate salt and water balance. As you may already surmise, these body processes are *critical* to life. And so, even though cancer in and of itself is scary, the complications have been even more so. They’ve been the factors requiring someone to be with him 24 hours a day, keeping him from being independent, and also delaying his return to school because any imbalance can be life threatening.

Throughout chemotherapy, we kept him healthy and regulated through diligent monitoring, medication dosing, and extra care. But, now radiation is bringing a whole new set of stressors.

{To recap, Thomas receives radiation every weekday. He started treatment January 14th and will be done February 28th.}

The area of Thomas’s brain that is being radiated, is that very power center.

Now, picture a domino effect.

Radiation can cause swelling and inflammation. This causes a stress response. Thomas’s body doesn’t release the stress hormone cortisol. He’s on medication to supply it. But in times of any stress, when his body needs more, unless we dose up his meds, his body responds with headache, vomiting, palpitations, blood pressure flux (remember this one for later), and body aches- just to name a few- and ultimately could result in death if the medications aren’t supplied. Additionally, Thomas’s body no longer releases the hormone ACTH to maintain his water balance. (Which is why Thomas is on water intake restriction and strict output monitoring.) Remember when I mentioned how stress can cause blood pressure flux? Welp. Blood pressure needs water to regulate by working with ACTH.

Thomas’s high pain tolerance combining with his peaceful nature can be a detriment in these situations, as he doesn’t complain until such symptoms arise at a more severe level.

And that level peaked last night. The doctors examined him yesterday at the Roswell after-hours clinic and both his Neuro Oncologist as well as his Radio Oncologist saw us today.

So, at this point, Thomas is being treated with an antibiotic for an ear infection and we are increasing his steroid dose to help him regulate the stress response, while monitoring his water levels closely. He has been resting here and there to combat the exhaustion. And he’s also doing great at rallying enough energy to be at least a little active each day. He’s held onto his “see the good” mentality and peaceful spirit - despite it all - and continues to forge forward, positive as ever, eyes on the prize: to one day be able to say he’s cancer free.

Thomas’s care team has been amazing. They are so invested in Thomas’s treatment and healing. They are so responsive and supportive. We are very blessed to have them in our corner. Truly, I can’t say enough good things about his doctors.

Matthew has been the absolute best dad— taking Thomas to his daily radiation appointments, helping him with his homework, and caring for him. My transition back to work has gone so well because I have the absolute best life partner on the planet.

So, between Thomas’s mindset, our care team, and Matthew- God has given me tangible proof that this will all be okay. Through my prayer, God has given me peace in my spirit that all this will be over soon enough.

But, *vulnerable moment* I’ve got to say - the last two days have brought some hard emotions for me as a mama. It’s been so difficult to watch my baby boy’s body betray him, to watch him be in pain.

I know I always ask you all to pray for Thomas, as that is where prayers are the *most important.* But, if you would, I humbly ask you, to pray for me as well.

Throughout this journey, God has given me the strength to stand through the storm. I’ve been able to stare fear in the face and profess faith. But, my human heart hurts watching my baby. And I know that only prayer can heal that.

In those ‘weak’ moments, I continue to look down at my tattoo - see the good; - and remind myself of how many blessings we’ve experienced throughout this journey. My heart may feel the excruciating pain that he does, it may be weary at times as we walk this path, but it also explodes with gratitude.



#teamingupforThomas #ThomasJayStrong #hoperises #seethegood #gratefulheart #myboy #effcancer #wegotthis #onestepcloser #Godisworking
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Radiation begins tomorrow! Prayers are welcomed and appreciated, please!

The radiation schedule will run every week day from January 14 - February 28 at Roswell Park.

Thomas visited the ophthalmologist this past week. His vision is indeed quite impaired. We are hopeful that with therapy and with time that his nerves will heal. As for now, we remain patient.

Thomas receives Occupational Therapy through school at our home each week. Ms. Moline has brought over visual aid equipment for Thomas to use. Right now the equipment is on loan from our district, but we are debating purchasing one to be able to have here ongoing. She also has assisted Thomas in getting used to the technologies that can help him navigate his ‘new world.’

There has also been a ‘changing of the guard’ here at home. As of January- I am back to work, starting a new job. Matthew is home on FMLA for the next twelve weeks. Thomas requires around the clock care, to help manage all of the side effects/medications/appointments/school instruction, and we are unsure on how long that need will be there. We have been debating hiring an aide, as navigating our household of six on one income has taken some juggling, but for now we are see-sawing the responsibilities best we can. We are so grateful for our understanding employers.

Thank you for your continued prayers and support as we continue our journey. Thomas is so appreciative, as we read him every comment and message. We are so deeply grateful for our tribe. ❤️

Much love,

Amy

#ThomasJayStrong
#teamingupforThomas
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$11,595 of $20,000 goal

Raised by 174 people in 10 months
Created October 3, 2018
Fundraising Team
on behalf of Amy Velez
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