Wednesday, July 24, 2013

Another comment from Phoenix Children's Hospital

Families are very appreciative when given but Social Works find this is a valuable resource to give to families

Nicole R Schuren, LMSW, IMH-E® (III)
Medical Social Worker
Phoenix Children’s Hospital

More comments from Phoenix Children's Hospital

When worked in the PICU and ED I would use them a lot. The families were always very grateful and appreciated them very much!

Michelle Elliott Smell LCSW
Center for Cancer and Blood Disorders
Phoenix Children's Hospital

Comments from Phoenix Children's Hospital about Devin's Gift

“Wow, these are truly wonderful!” And then in discussion that they are so excited that they do not have to use a hospital towel.  Parents have found the notebooks especially helpful, to write down their questions for the physicians/care conferences.
Deborah Daniels, LMSW
Pediatric Intensive Care Unit
Phoenix Children's Hospital

Tuesday, July 23, 2013

Goals for Devin's Gift

Currently we provide hygiene kits to Phoenix Children's Hospital.  As children are admitted to the hospital kits are handed out to parents.  I would eventually like to take the kits to Cardon Children's Hospital.  (Devin was also a patient of Banner Desert and Cardon Children's Hospital).  From there I would like to donate kits to every hospital in the valley.  Even adults whose friends and family have been admitted to the hospital need a chance to freshen up and could use a kit. 


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Donations are accepted utilizing PayPay on our website.  Thank you.

Wednesday, July 10, 2013

More Information about Devin's Gift

Devin's Gift is a non-profit Arizona corporation.  We have a 501(c)(3) non-exempt tax status so all donations can be written off on your tax return.  You can double check our tax status on the IRS website.  Donations are taken using PayPal on our website  We are also on Facebook and Twitter.  

We have donated over 100 kits to Phoenix Children's Hospital.  Hopefully someday we will be able to expand to Cardon Children's Hospital and eventually every hospital in the Valley. 

I could not do any of this without the help of my supporters.  Thank you! Thank you!  If you would like to see who they are please see the supporter's tab on our website.  What I am doing really means a lot to me because I am so grateful for the all the support and gifts we received when Devin was sick!  This also helps me with my grief and keeping Devin's memory alive.  I am just so glad do to it for the parents of kids who are hospital.  I've been there and now what it feels like.   Prayers to all those families.


Friday, July 5, 2013

The Story of Devin's Gift


My name is Jessica.   I have lived in Arizona most of my life and I am proud to call Arizona my home.  There was a brief time when my family and I  moved away from Arizona to be near my ill father in Illinois.  We moved there in October 2005.  Sadly a month after arriving in Illinois, my father passed away.  We decided to try and make a go of it and stayed.  Found jobs, bought a house etc.  After a while I became unhappy and homesick.  Illinois never felt like home.  I missed Arizona and my old life there.  I began to try to find a new job in Arizona to enable me to return.

Then something wonderful happened.  I got pregnant with my second son, Devin.  I was happy about it, but I longed for Arizona so much I was discouraged that a pregnancy meant I had to stay longer in Illinois.  I had to stay until Devin was born, while I had a job and health insurance.

My pregnancy was a little challenging.  I got gestational diabetes right away.  It could not be controlled by diet so I had to have insulin injections on top of finger sticks 4 to 6 times a day.  It also meant more doctors’ appointments. You do what you have to do though to insure a healthy baby! Devin was what was important.  Near the end of the pregnancy it was determined that Devin’s kidneys were distended, but the thought was it would just be monitored.    

Devin was born early in the morning during a blizzard in January 2008.  It was frigid out.  I was scheduled to have a C-section.  Even the anesthesiologist was late because of bad roads.  The hospital was so empty it felt vacant.  It felt like we were the only ones in the world.  Regardless, Devin arrived without complication.  He was beautiful.  All babies are a blessing!  Devin joined his big brother John in our quaint family.  While at the hospital Devin had to have a special radiology exam for his kidneys.  It turned out he had a mild stage of hydronephrosis of both kidneys.  It’s just a fancy word for distended kidneys.  Thankfully it didn’t require surgery.  All he needed was one year of antibiotics to avoid kidney infections.  It would hopefully resolve on its own.  We could handle that right?

After Devin came home from the hospital, and while I was on maternity leave from my job, I began looking for a new job again in Arizona.  We had already put our house up for sale.  Miraculously I got my old job back.  As soon as the doctor released me, we were on our way back to Arizona.  We actually left right when I got home from the doctor’s office.  Devin was just 2 months old.  Driving with a newborn and a 3 year old across country is challenging enough but I didn’t care.  We were on our way home to Arizona.  The trip was indeed adventurous.  The U-Haul truck towing our car got stuck in mud in Missouri.  The trailer towing the car blew a tire in a remote part of Oklahoma.  My son John threw up all over the bed we were sleeping in at the hotel in New Mexico.  He got food poisoning or some stomach bug.  He threw up in the car periodically most of the next day.  After all that, we finally made it back to Arizona in April 2008.  We blissfully went on to re-establish our lives here in Arizona.  The next few months were pretty uneventful.

When Devin turned one he had to have another study to look at his kidneys.  Good news, his kidneys were 100% normal.  He could be taken off antibiotics.  No more doctors for us.  Our happiness was short lived.  Three months later, one year after we moved to Arizona, Devin became suddenly ill.  Initially, I thought he had the flu or a cold.  He never got a fever though.  I thought it would just pass whatever he had.  But he began to sleep more and more.  His breathing became labored.  He eventually stopped eating and drinking.  If he did drink he threw it up.  I took him to urgent care, but they didn’t know what was wrong with him.  I then took him to the ER.  Before I knew it, after a chest x-ray and a CT scan, we were being admitted to the hospital.  The only thing I overheard about what was going on was that Devin wasn’t moving any air on from the left lung. Huh? We were taken to the Pediatric Intensive Care Unit.  About 45 minutes after we arrived at the hospital, the doctor was telling me that Devin had to have a chest tube and would be intubated.  WHAT???  I thought the worst would be is that Devin would just need 24 hours of IV antibiotics and we’d be good to go.  This was not what happened at all!  A week later after all this testing and Devin being in a medical coma, it was determined that Devin had Non-Hodgkin’s Lymphoma.  That’s right CANCER!  No word a parent ever wants to hear.  Devin was only 15 months old.
Well here we go.  Even though it was cancer, Devin’s prognosis was good.  He had an 82% chance of beating it!  That’s great!  No problem right?  The treatment protocol called for chemotherapy for two years.  Nine months of which was fairly intensive.  Our whole life changed, but we adapted.  I was glad I was in Arizona because of all our friends and family.  I was also fairly familiar with the medical community because of my job and I was happy with Devin’s care.  If we were in Illinois still, I would have been blind as to hospitals and doctors and their reputations.   I would have been lost.  So I was glad to be in good ole Arizona.  Ultimately, Devin responded to his treatment well. 

Unfortunately, Devin did not complete his treatment.  His cancer came back a year and half later. He was again in the hospital.  Devin’s chances of survival were now dramatically decreased.  He developed other complications that kept him in the hospital longer than anticipated.  Thank goodness we were now at Phoenix Children’s Hospital--an amazing hospital.  This recurrence meant Devin also needed a bone marrow transplant.  We were in a roller coaster ride.  Once Devin’s cancer came back, he only came home once from the hospital.  That was in November 2010.  It was only for a couple of weeks, just before he was to be admitted again for transplant.  We celebrated Christmas one month early so our family could all be together.  On December 14, 2010 (my birthday) Devin was admitted to PCH for his transplant.  He received his stem cells on Christmas Eve (December 24th).  He had his third birthday (while still in the hospital) one month later on January 22, 2011.  He had responded well to the transplant.  He progressed as expected and there was an end in sight as far as leaving the hospital.  Devin was discharged from the hospital the end of January 2011. Our reprieve would be short lived.

Devin was barely home two weeks from the hospital when we found out Devin’s cancer was back AGAIN!  Horror struck!  There was no more treatment to be had.  We now knew that Devin would die.  It was February 16, 2011.  Devin never came home again.  Devin died on February 24, 2011 exactly two months after he received his stem cells.  Life was never going to be the same again. 

Devin’s story does not end there.  Throughout the whole ordeal of Devin’s illness we met so many wonderful people.  We had so much support both from people we knew and strangers.  Our family was embraced by so much love and generosity.  Devin’s caregivers were wonderful!  He received so many gifts from various sources while he was under care.  He got a free DVD player, lots of toys, a bicycle for his birthday, lots of stuffed animals and Hot Wheels cars etc.  All to make his life easier while he endured so much.  The rest of the family received gifts too.  We were adopted for Christmas, we received gift cards.  The love and support abounded during everything.   It was all so amazing.  It was a amazing to realize how much goodness there is in this world.    People do come together in hard times.  I had never experienced it for myself until Devin got sick.  I am so thankful to everyone who touched our lives.

Because we received so much, I wanted to give back for all that we were given.  At this point in my life since the loss of Devin, it is still so hard to go near or into a hospital or clinic setting because of memories of Devin and what he went through.  But I want to give back because of all the love and support my family received from others.

I know as a parent with a suddenly ill child it’s the worst feeling in the world.  The helplessness alone is tormenting.  And then, to be admitted to the hospital when you least expect it is overwhelming.  You are stuck there without the basic necessities.  Your mind is focused on your child whose side you don’t want to leave.  You have no toothbrush, no decent towel.  Knowing this and wanting to help parents, I created Devin’s Gift, a non-profit corporation.  Devin’s Gift provides care packages for parents of sick children who are unexpectedly admitted to the hospital.

My goal, through Devin’s Gift is to provide parents in these situations with a care package to give them what is needed to shower until they have time to go home or until someone brings them the things they need.  So they can feel a little better after taking a hot shower and brushing their teeth, even if the moment only lasts for a few minutes.  I am hoping these little creature comforts will renew parents and their strength and courage before taking their child’s side again.  I want to bring a little peace in the middle of chaos because I know what it feels like and if I can make someone feel better even for a
moment our job is done.  I do this for Devin to remember him for his life and not his disease and death.

Each parent receives in the kit a brightly colored towel and washcloth, tooth paste, tooth brush, dental floss, razor or deodorant, shampoo, conditioner, lotion, mouthwash, Chapstick, a pen and a notepad for taking notes.
My baby in between cancer treatments.

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