Help Ben Fight Leukemia
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UPDATE --DAY 270
(Ben during the Bellingham February snowstorm)
So many of Ben and Ashley’s friends and extended family have been asking how things are going; how is Ben doing that it was time for a long overdue update. Ben’s year anniversary of being diagnosed with Leukemia has just passed, May 28th, and this past year has been so very tough, and yet full of miracles. Ben has been working hard at healing and getting stronger; but as he has tried his body hasn’t been quite up to the task yet. He, his brother Max and wife Ashley were hitting the gym for a short time in April to get some of Ben’s strength back, but weren’t able to continue because Ben’s energy quickly declined; soon they will be back in the gym we all are hoping. Mom, Ben, Ashley, Max and Breezi had planned to attend the Death Cab for Cutie & ODESZA concert as a family in Bellingham together in May but Ben’s health didn’t allow for it, so Mom got him a commemorative t-shirt and promised tickets to a future show!
Over the past few months the Oncologist has been slowly tapering Ben off of his daily diet of some rather nasty drugs, including very high doses of prednisone to treat the graft vs. host disease of the upper GI and tacrolimus which suppresses the immune system. These drugs, although important to keep him from succumbing to a series of worse health conditions, have some ugly side-effects including bloating, nausea, skin rashes, etc. Ben and his family are very much looking forward to the day he can be mostly drug free! His cardiologist continues to give him high marks for heart function (yahoo), and he is good about taking his heart medicine daily.
Although not feeling well, and three-six months earlier than recommended, because of mounting financial needs due to being out of work for a year, Ben was preparing to go back to work. But because of a significant health decline (such as blood platelet numbers dropping, increased nausea and exhaustion, extremity swelling, etc.) he was forced to stop his preparations and recently formally resigned. Ben wants to work, and tried but physically wasn’t able to. In Ben’s own words, he estimates that these past few months of stress and worry have put him back an equal amount in his healing.
Ashley took a position with the Paul Allen Institute the end of May and fortunately she is really loving her job and employer; so she brings home that happiness to Ben which is so nice.
(Ben and Ashley outside their Richmond Beach townhome)
What’s next? Ben is having blood work this week and meeting with his oncologist team on Friday to see what the status of the growing physical symptoms he is having, including the blood platelet decline, and map out a plan.
I will do better at updating everyone via this GoFundMe site, and I ask that you continue to pray for Ben, Ashley and their family that the healing process progresses and they can focus on all the beauty this life has to offer! If you have it within your means to make an extra contribution to this fund, please do as it will alleviate Ben’s stress a bit and allow him to focus on healing.
Ben’s most recent quote of focus: “The journey in between what you once were and who you are now becoming is where the dance of life really takes place”. Barbara DeAngelis
Thank each and every one of you for all that you have done to support Ben during this most difficult time; you make his load lighter. Blessings and great love, Ben, Ashley and their families.
(Brother Max taking Ben to his appointments at SCCA)
(7 month old Ben with his Grandaddy 'Big Ben')
UPDATE -- DAY 121
January 13th, 2019
(Ben and Ashley during a regular SCCA visit)
Happy New Year and may 2019 bring great joy and healing.
Holidays were good, even great with the family together and good friends around.
(Traditional Xmas eve at Mt. Baker with the family)
(Christmas morning with the family)
(So darned happy to be together)
Ben's best friend from Colorado, Danny made a special trip to visit Ben while he is healing. It gave Ben an opportunity to show Danny his beloved Seattle; and for Danny to get Ben laughing and releasing those endorphins, not to mention someone for both of them to talk to about their car obsessions!
(Danny, Ashley and Ben on the Vashon ferry)
Sadly the new year brought a setback for Ben. He began experiencing significant GI graft vs host disease (GVHD) symptoms which left Ben very ill. The treatment has included extremely high doses of prednisone and Tacrilimus plus other meds to suppress his immune system which has brought on even more physically debilitating side effects. What’s next?
1. Tuesday, 1/15th Ben will have an endoscopy (from both ends) to take biopsies of his GI track in order to assess the severity of the GVHD and what the treatment looks like going forward.
2. Tapering of his immune suppression medicine will be pushed back at least two months (so instead of beginning the seven month process in February, earliest will be April).
3. Projected ability to return to work, even part time, could be pushed back at least a month (so April instead of March).
4. His wife, Mom, Dad, brother and sister are adjusting work schedules to spend several days a week with Ben to assist with Ben’s escalated needs right now.
(Ben at SCCA receiving IV fluids due to the increasing effects of the GVHD)
This has escalated medical expenses and definitely was a setback emotionally for Ben and his family. That said, Ben is doing everything in his power, with the support of friends and family, to remain positive and looking toward the future.
I know each of you have given so much and on behalf of Ben, his wife Ashley, and his family I am asking if you could increase your prayers, good thoughts, notes and if you are able to add a financial gift now, it will help in so many ways from the small to the big.
Ben is on the next leg of his healing marathon and with the support from us all, he will have the strength to keep going.
God Bless, Ben & Ashley and family.
December 4th UPDATE -- DAY 81
(Ben on his daily walk in his Richmond Beach neighborhood)
Day 81
Today Ben turned 81 days post stem cell transplant and he is closing in fast on the 100 day post-transplant countdown toward freedom from 24 hour care! A great deal has been happening since the last update for Ben. The beginning of November brought some tough symptoms that escalated over the first two weeks of the month and ended with Ben in bed and ill on Thanksgiving. Undeterred, his brother, sister, Mom, Dad and Ashley spent Thanksgiving with Ben; being all together was so important. After many tests and a visit with several gastroenterologists it was determined that he had a mild case of Graft vs. Host Disease of the upper GI. Oral steroids were prescribed and luckily, they have seemed to calm things down, thankfully! Ben is eating and drinking again and has gained a .5 kilo in the past week!
(Ben and the Gastroenterologist discussing treatment options)
This past week he was able to walk 2-3 miles a day and had an all-time personal best on Friday, climbing 188 stairs at Richmond Beach Park! He’s lost a good deal of his muscle mass, but his oncologist team is thrilled that he is pushing himself to walk daily in order to gain some of it back.
Ben’s blood counts have been consistently in the normal range for a couple of weeks now with the exception of his red and white blood cells. These have been fluctuating between normal and just below normal. The doctors have been continually adjusting the doses for the immunosuppressive drugs and are hoping to have found the best dose.
(One of the many late night visits to SCCA)
Today Ben had an echocardiogram and on Thursday, December 6thhe will have a bone marrow biopsy. The results of these two tests will tell us a great deal as Ben and his family begin to prepare for the upcoming discharge from the transplant team in a couple of weeks.
Ben is a miracle in so many ways, and his ongoing positive attitude is what is helping with his healing, we are sure of it. Your prayers, cards, messages and financial support is what is fueling his positive attitude…you are his army of hope and we, Ben and his family, are so very blessed by each of you.
May this season of joy and gratitude be felt by each of you and your loved ones, Ben & his family.
October 18th UPDATE -- Day 35
(Ben, Moma and Ashley via facetime together as Ben receives the first of his bone marrow transplant stem cells)
So much has happened over the past five weeks for Ben. September 14th his bone marrow transplant stem cells arrived and were immediately transfused to Ben. This was considered day 0.
(Ben's nurse presents the B+ Bone Marrow stem cells swaddled in a blue blanket to him as a preparation for the transfusion and his 'new birth')
He remained in the hospital through September 30th, until the blood tests began to show neutrophils, his mucuscitus had healed enough so that he could eat and drink on his own, and his risk of graphed host disease was able to be managed. Although the four weeks he was at UW hospital were tough as far as the effects from the chemo, immune suppressant drugs and host of other drugs he was on, Ben amazed his doctors and the hospital staff by being discharged a 7-10 days earlier than they projected. We all believe it is his attitude and the love and prayers of his family and friends that are giving him strength to heal and heal quickly.
(Ben's sister Brielynd helping to unpack to get Ben & Ashley's Richmond Beach town-home ready for Ben to come home from the hospital)
Ben and Ashley arrived at their new townhome, which had been sterilized and purified in every possible way by his loving family and a host of specialists, on September 30th, day 16 for Ben. He was tired, but happy and was so excited to take a shower and a bath and sleep in his bed. For the next 90 days Ben will need a caretaker to be with him 24 hours a day. His brother Max, sister Brielynd, Mom Deb, Dad Erik, Aunt Judy and of course Ashley are taking shifts over the next few months to make sure Ben is safe, fed, and laughs as often as possible!
(Ben's first week at home, trying to find his tastebuds and an appetite again by hoping to enjoy some of his old favorites)
Ben's days are filled with visits to Seattle Cancer Care Alliance for lab work, clinic and doctor visits and concessional scans followed by recuperating time and getting walks in as much as possible. Ben continues to have good news on his tests and labs, which gives us all a boost. He hasn't had any significant complications other than the nerve pain on his extremities, bottom of his feet and hands. He describes it as if you have a 1st degree burn on the bottom of your feet and then you are having to walk on hot coals. The doctors are working hard to find a way to help diminish the pain.
(Aunt Judy (me) enjoys Seattle after Ben's morning at SCCA for lab work and doctor appointments. They got some exercise in at Gasworks Park)
(Ben's brother Max shaved his head in solidarity and support for his big brother)
BIG NEWS DAY
Today, October 18th and Ben's 35th day since transplant, he received wonderful news. The preliminary results of the bone marrow biopsy Ben had yesterday showed NO FLT-3 leukemia cells! His white blood cells, neutrophils and hemoglobin numbers are almost in the normal range; which is the best and most wonderful news we could get! Ben and his aunt Judy celebrated with a hot donut from Krisply Kreme and a drive to Alkai Beach.
(Ben and Ashley happily watch the sunset from Richmond Beach Park as they celebrate the good news today)
There are many days and weeks of healing to go for Ben, and his attitude is carrying him through bouyed by the love, generosity, paryers and support from each of you. Thank you for what you've done for this wonderful young man and his wife. Your financial support has allowed for him to pay for his basic medical costs, living needs, and simple but crucial items like parking at the UW hospital. He is hoping to receive some disability funds at the end of the year, and until then thank you for everything you do. May God Bless, Ben and his loving family.
September 12 UPDATE
(Ashley helping Ben with his new picc-line care) (At UW Hospital)
A lot going on these past few weeks. After two weeks of intense testing on every major organ and body part to make sure he was strong enough to withstand the bone marrow transplant, Ben got the thumbs up last week Tuesday and on Friday, September 6th was admitted to UW hospital and started his chemo therapy. The chemo regimen ended yesterday and today is a day of ‘rest’ for his body; that is except for him beginning to receive the immune suppressant medications to allow for his body to not reject the new stem cells. These medications have their own complications :( .
This chemo was so strong it will kill all of his bone marrow and he will be essentially on 'life-support' through continual blood and platelet transfusions until the bone marrow transplant stem cells are accepted by his body and then start to make new neutrophil; which if all goes well will begin to happen in about two to three weeks, and will take a year+ to be at 100%.
Tomorrow, on Thursday, September 13th our Ben will receive the bone marrow transfusion of stem cells and he will be reborn so to speak. When the new stem cells begin to ‘root’ and produce blood, Ben’s blood type will change from O- to B+ (the donor's blood type). So, Ben will be new – literally, a newborn and his new birthday will be September 13th, 2018. I invite each of you to find a way to celebrate Ben's Re-Birth-day on the 13th.
Ben is stable right now with and incredible positive attitude, and as the Chemo symptoms are beginning to start, we pray they are brief and tolerable. We know Ben will be in the hospital at minimum through this month so please keep your prayers, support, kindnesses and generosity flowing because this is what brings Ben and his wife Ashley a few moments of joy each day. You each are a blessing and thank you so so much for continuing to be there for us all!!
Ben’s Address:
Ben DeWees
UW Hospital
1959 NE Pacific St.
Cascade Tower – Floor 7NE, Room 7214
Seattle, WA 98195
(Aunt Carol came from Ohio to support her sister Deb, and to smother Ben and Ashley with her love and laughter)
(Ben showing Aunt Carol the boat he captained to pay for college, while strolling the 'docks')
(Brothers in B'ham)
Ben and brother Max grabbing coffee at a local UW district cafe between Ben's appointments)
(Ben's Mom Deb with her friend Cathleen, who opened her home to Ben and Ashley so that they could be close to the hospital through August. You are a blessing Cathleen!!)
Deb (Ben and Ashley too for that matter) has asked that I let you know that she fully intends to appreciate and thank each of you overtime for your incredible generosity. You continue to be her army of strength.
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
Ben's Loving Family -
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
August 23 UPDATE
It has been five very full weeks for Ben and Ashley; some good, some frustrating, some tough but laced with great hope, support and an abundance of kindness that continues to keep Ben's attitude positive!
Ben's week of Chemo on the 8th floor west wing of UW Hospital resulted in some increased and uncomfortable symptoms that were difficult, but he managed to make it through. Ashley and family were by his side making sure he ate and walked the floor when he could. He was discharged and the two were happy to go to be with family in Bellingham and continue to heal from the chemo. Unfortunately three days later Ben found himself with a fever and was admitted to St. Joe's Hospital where the next week he received numerous tests, blood and platelet transfusions and fluids while they made sure the fever was from the chemo and not an infection. The stay was horrible in that the rooms were dirty, the floors filthy, some of the nursing staff didn't follow cleanliness protocols and the doctors didn't follow Ben's Seattle Cancer Care Oncologists' orders around medications and neutropenic care standards.
(Ben and Ashley at St. Joe's in Bellingham)
(Ben in St. Joe's with his sister Brielynd standing by)
(Ben receiving platelet transfusion in Bellingham)
Seattle Cancer Care had found the only leukemia oncologist in all of Whatcom County to conduct lab tests on Ben's blood and to provide the regular transfusions he needed. This was so that Ben could be at home with his parents in Bellingham and wouldn't need to commute the 190 miles to and from Seattle every other day. We knew this wasn't optimal when the oncologist told Ben on his first visit that he didn't treat AML patients because they needed too much and it was too hard :( .
When Ben came down with a second fever and a strange cough the entire family agreed he needed to go to UW Hospital and stay in Seattle to receive transfusions and care. He was admitted immediately to UW Hospital where he stayed for five days while they ran multiple tests and provided him with blood and platelet transfusions plus numerous antibiotics to ward off any infection. He had a few friends from gradeschool visit: Lea and Natalie. They helped him laugh, thank you friends!! Visitors have become so important to help Ben laugh and share his incredible wit (and car knowledge!)
While in UW Hospital Ben's Mom's friend Shari Campbell brought a special gift all the way from Germany: a rosary that she received on her trip from someone who said it would bring healing for Ben. And the thought and the energy of such a gift has truly been a blessing. It is kindnesses from so many that are supporting Ben and his family in so many necessary ways.
GREAT NEWS ARRIVES
On July 30th Ben got a phone call letting him know that a perfect donor match had been found and that his bone marrow transplant date was going to be scheduled for September 13th!!!!! Ben's Mom let out a squeal of delight and the news was cause for celebration! His donor is a 30 year old male who resides in the US. His donors blood type is B+....Ben's blood type is O-; yet genetically they are a match in terms of his body receiving the marrow.
Since then Ben, Ashley and his family have been meeting with his Bone Marrow Transplant Team (He is on the Lime Team), the social workers, the nurses, the nutritionists, the oncologists, and a host of other team members to make sure this intense transplant process is successful and we all are aware of what to Ben will be going through and what to expect.
At the same time Ashley accepted a job as an analyst at Paccar in South Seattle and was to begin her job on August 13th (YAHOO, income and insurance). Ben also learned that August 15th-30th he was to be scheduled for all day tests at Seattle Cancer Care (SCCA) to make sure that most of his organs and biological systems were strong enough to withstand the bone marrow transplant successfully. So far he has gotten an A+ in every category!
What this meant was that we needed to find Ben and Ashley housing in the Seattle area (suitable for an immune suppressed individual and within 30 minutes from UW Hospital). Ben and Ashley had been on the waiting list for the SCCA housing options, but nothing was available. Mom and family looked at every possible rental, airbnb that was even remotely affordable and struck out. So Deb put out the call to all her friends and wonderful WWU alumni for help. Help arrived! Thank you Cathleen for opening your home to host Ben and Ashley through August!! Deb wanted me to share that she was so moved by the ideas, possibilities and offers of help for finding a place for Ben and Ashley - a special appreciation to Tina & Rob, Lynn & Alex, Fritz & Di, Kay, Cathy, Wendy, Scot, Chris, and so many others for helping!
Ben is scheduled to be admitted to UW Hospital on September 6th. He will begin five days of some very toxic chemo therapy to kill all of his bone marrow. He will begin his bone marrow transplant on September 13th and it will be a rebirth in so many ways, one being that in the end his blood type will be B+. He will have 100 days beginning on the 13th to accept the bone marrow, and begin to heal and start to produce hemoglobin, platelets and white blood cells again! He will remain in the hospital through September and then be released into the 24 hour care of his loving family.
There is a great deal to be done over the next few weeks including four mandatory classes for those that will be caring for Ben; but we are all so very excited for what this will bring to our Ben: a complete healing.
You are a such a big part of Ben's healing and team. Your prayers, good thoughts, gifts and support are making all the difference for Ben, Ashley and his family. We appreciate the blessings you are sharing with us and hope to have you with us as the journey continues.
Ben's short term disability support ended this month, which makes your financial gifts so important as they continue to offset a portion of his growing medical costs; truly a blessing.
- Ben and family –
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
July 19 UPDATE
The next leg of this healing marathon begins.
(Ben with Ashley and his Momma in his UW Hospital room)
On Tuesday, July 17th Ben was admitted to UW Hospital to begin another round of chemo therapy called FLAG. He will remain in the hospital for the next 10-15 days for the chemo and observation. Ashley is staying with him and his family is there every moment they can be! His room (above) is called the 'penthouse' because of the amazing view of Lake Union and the many boaters. His little brother Max is working not too far from the hospital so makes sure he has some 'brother-time' daily.
This week he also spent time meeting with his hematological oncologist and the bone marrow transplant team. It was a head spinning experience of information, options to be a part of research studies and possible complications from the transplant. The healing process and rigor of the medical follow up protocols are complex but successful in the end. The one item that is continuing to be a bit of a concern for best treatment options is making sure that his heart is not only back to 100%, but that it remains that way - which we are all happy about!
(Reviewing the mountains of information about bone marrow transplant)
The great news is that they have found several possible bone marrow match donors but will now refine to the best match with further testing which could take up to two months…..once that perfect match is found then they start the process of preparing Ben for the transplant process….more to come on that…
We also learned that his lead bone marrow transplant doctor runs two research labs focused on FLT3 AML, Ben's leukemia type and has been practicing at SCCA and Fred Hutch for over 20 years. His hematological oncologist is ranked in the top three in the world for leukemia; he is in good hands!
The 10 days before Ben had a bit of R&R time in Bellingham in between his regular visits to Seattle for blood and platelet transfusions. Family and friends made sure to visit and keep his spirits high and smile bright!
Ben, Ashley and our entire family are so very blessed by your gifts, cards, thoughtfulness, visits, and of course prayers! This is fueling his positive attitude, which remains impressively strong and allowing him to focus on healing and not worrying.
Your financial gifts continue to offset a portion of his growing medical costs; truly a blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
July 8 UPDATE
This was a BIG and busy week for Ben, almost like being in a vortex. He and Ashley finally arrived home to Bellingham Monday night, July 2nd after 10 hours of tests, blood & platelet transfusions, and meeting Dr. Estey at Seattle Cancer Care Alliance (SCCA). What a head spinning experience!!! Deborah was so glad to see her own bed & her labradoodle Sweety after five weeks in AZ!
He was back at SCCA on Thursday for a bone marrow biopsy, echo cardio gram, and five hours of blood and platelet transfusions. Ben’s echo cardio gram results from last week were good, showed his pumping strength is back to normal yahoo!! No bone marrow results yet...this week for sure. These results will set the course for the next phase of his treatment.
His neutrophil and hemoglobin numbers continue to go down sadly, which results in his feeling flu-like, exhausted, and neutropenic :(. We’re (mostly Ashley & Ben) are making the 180 mile trek down and back to Seattle Cancer Care Alliance every other day for platelets and blood transfusions (12 hour days). All of this really adds to the stress and complexity, but Ben’s attitude is so very positive and he is happy to be home and surrounded by so much love .
His best friend from AZ, Danny made a special trip to visit Ben while he was at SCCA getting a transfusion. It gave Ben an opportunity to show Danny his beloved Ballard; and for Danny to get Ben laughing and releasing those endorphins, not to mention someone for both of them to talk to about their car obsessions!
Erik did his part today to lift Ben’s spirits by popping the hood of younger brother Max’s car so he could replace a few parts while Ben stood by offering words of auto-wisdom. And, Ben drove Erik’s Toyota Tacoma (Ben’s first driving experience since May) to Squalicum Harbor; that is after Deborah sterilized the entire cab of the truck!
He, Ashley and our entire family are so very humbled by your gifts, notes, ongoing support, help, encouragement and of course prayers! This is sustaining him and us all.
Your financial gifts have already begun to offset some of his medical costs; a blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance
###### Update 6/30/2018 ######
Great news!!! Ben has been accepted as a patient at Seattle Cancer Care Alliance with collaboration at the Fred Hutch!! He has his intake appointment at 1pm on July 2nd. We anticipate they will schedule his bone marrow biopsy for the next day or two and then will determine when he will be admitted to begin Phase 2, which will require another 4-week hospitalization. In between he’ll be home with us in Bellingham :).
This is GREAT for Ben and the family, and clearly shows the incredible improvements Ben has made in order to formally be discharged. He is very eager and excited to get back to his home state and be closer to his family and friends up there.
He was released from Mayo Friday, back for more platelets on Saturday. Ben’s employer Carvana is flying Ben, Ashley and Mom first class to Seattle Sunday (July 1) morning. Erik, Max and Breezi will meet them with a wheelchair and a van to transport. They’ll have to stay in Seattle, close to Hutch, Sunday night.
Ben will remain neutropenic for the foreseeable future. So mask, avoiding any germs or undercooked foods or fresh fruits, veggies will be in order.
Also, during Ben’s time in the ICU his wife Ashley had to stop working from her recent job in Phoenix in order to be by Ben’s side each day and to move with him to Seattle. This was a very difficult financial decision for them to make but she will begin a Puget Sound job search as soon as Ben is settled. They have expressed such appreciation for the tremendous amount of support that everyone has shown and hopefully are willing to continue to it, to enable Ashley and Ben to move and begin new treatments in Seattle more easily. They are incredibly grateful and know they aren’t going through this long and difficult process alone.
Having said that, Ben and the family are incredibly grateful for his employer Carvana, and the Carvana Buying team for their assistance and support. They are flying Ben, Ashley, and Deborah (mother)to Seattle, as well as moving Ben’s/Ashley’s household from Phoenix to Seattle. Ben and family feel thankful for the continued support from Carvana and everyone that is helping this transition from Arizona to Washington be that much smoother.
Deborah has been with Ben in Arizona since Memorial Day Weekend and she plans to be back working at WWU on July 5th :)!!! I’m sure you all can understand how excited she is to rejoin society outside of a hospital (5 weeks later)…!!!
The outpouring of prayers, cards, well wishes has been sustaining Ben and the entire family; not to mention the financial gifts through GoFundMe. These funds are allowing for Ben to pay for some of the medical bills that are beginning to flow in. A blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu
###### UPDATE 06/20/2018 ######
We wanted to update everyone on Ben's recent improvements with regards to his heart status and leukemia treatments.
He has not had any episodes (i.e., heart failure) for the past two days and getting more energy by the minute. He has been able to move out of bed, do basic tasks, and even was able to walk around the ward a couple times. His energy and spirits continue to grow with the support of the family and the Mayo staff by him . He still is battling pneumonia while on-top of everything else so this Ox is doing quite well despite all the obstacles that are thrown at him.
The siblings unfortunately were not a complete match for the bone-marrow transplant but the clinic is actively looking at the online data base to find a 100% match.
The hope is for him to transfer out of ICU in the next 24hrs which allows him to go off intensive care. His heart and his vitals are showing fantastic improvements.
The full bone-marrow biopsy report came back and unfortunately Ben still has roughly 12% blast cells (leukemia) in his bone marrow. This means that a new round of chemo therapy will be needed in order for him to be in remission ( < 5% blast cells). The goal is for him to get one final biopsy next week in Arizona and then continue his chemo treatment/bone marrow transplant at Seattle Cancer Care Alliance in Seattle, Washington.
His family continues to wish the upmost support from friends, family, colleagues, etc during this difficult time. Each and every dollar that you are able to contribute now and into the future will help pay for these treatments and re-locating him up to Seattle.
Each share and every donation is allowing the world to them and will continue to help ease the transition once the recovery period begins.
Thank you for all the on-going support and prayers and we will update you again soon!
Blessings to you all!
##################### 06/09/2018 ########################
My nephew, Ben DeWees, 30 years old was recently diagnosed with Acute Myeloid Leukemia with a rare high-risk mutation (FLT3-ITD). He just finished his first round of chemotherapy at the Mayo Clinic in Scottsdale, Arizona and waiting for his second biopsy to demonstrate treatment effectiveness so far.
Unfortunately this cancer is really aggressive and the treatment and recovery path are going to be long and arduous. He is awaiting a bone marrow transplant and further chemotherapy treatment. Right now we are praying one of his siblings will be a perfect match!
After the bone marrow transplant, he will be in intensive treatment and round the clock care for several months (minimum of 100 days with no complications) until they can declare him "in remission".
Ben and his beautiful wife Ashley will be moving back to Washington State to complete the bone marrow transplant and further treatment. Fortunately, Ben and Ashley will have a large, extended network of family and friends there to give them care and support.
As I am sure you can imagine, this is not only a physical and emotional strain but also a financial strain. Ben has only been at his job for a year and half and Ashley, who just graduated college in May, started a brand new job in the midst of all of this. To be honest, Ben and Ashley don't have enough money to cover the out of pocket medical expenses (minimum $6500), moving expenses, and basic living expenses while Ben is in treatment and recovery.
If you are able to support Ben and Ashley, please consider donating to this cause to take this worry off of their minds and let them focus on healing and recovery. Please also continue to pray for Ben, Ashley and his family - they can feel all the prayers, support and love!
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
(Ben during the Bellingham February snowstorm) So many of Ben and Ashley’s friends and extended family have been asking how things are going; how is Ben doing that it was time for a long overdue update. Ben’s year anniversary of being diagnosed with Leukemia has just passed, May 28th, and this past year has been so very tough, and yet full of miracles. Ben has been working hard at healing and getting stronger; but as he has tried his body hasn’t been quite up to the task yet. He, his brother Max and wife Ashley were hitting the gym for a short time in April to get some of Ben’s strength back, but weren’t able to continue because Ben’s energy quickly declined; soon they will be back in the gym we all are hoping. Mom, Ben, Ashley, Max and Breezi had planned to attend the Death Cab for Cutie & ODESZA concert as a family in Bellingham together in May but Ben’s health didn’t allow for it, so Mom got him a commemorative t-shirt and promised tickets to a future show!
Over the past few months the Oncologist has been slowly tapering Ben off of his daily diet of some rather nasty drugs, including very high doses of prednisone to treat the graft vs. host disease of the upper GI and tacrolimus which suppresses the immune system. These drugs, although important to keep him from succumbing to a series of worse health conditions, have some ugly side-effects including bloating, nausea, skin rashes, etc. Ben and his family are very much looking forward to the day he can be mostly drug free! His cardiologist continues to give him high marks for heart function (yahoo), and he is good about taking his heart medicine daily.
Although not feeling well, and three-six months earlier than recommended, because of mounting financial needs due to being out of work for a year, Ben was preparing to go back to work. But because of a significant health decline (such as blood platelet numbers dropping, increased nausea and exhaustion, extremity swelling, etc.) he was forced to stop his preparations and recently formally resigned. Ben wants to work, and tried but physically wasn’t able to. In Ben’s own words, he estimates that these past few months of stress and worry have put him back an equal amount in his healing.
Ashley took a position with the Paul Allen Institute the end of May and fortunately she is really loving her job and employer; so she brings home that happiness to Ben which is so nice.
(Ben and Ashley outside their Richmond Beach townhome)What’s next? Ben is having blood work this week and meeting with his oncologist team on Friday to see what the status of the growing physical symptoms he is having, including the blood platelet decline, and map out a plan.
I will do better at updating everyone via this GoFundMe site, and I ask that you continue to pray for Ben, Ashley and their family that the healing process progresses and they can focus on all the beauty this life has to offer! If you have it within your means to make an extra contribution to this fund, please do as it will alleviate Ben’s stress a bit and allow him to focus on healing.
Ben’s most recent quote of focus: “The journey in between what you once were and who you are now becoming is where the dance of life really takes place”. Barbara DeAngelis
Thank each and every one of you for all that you have done to support Ben during this most difficult time; you make his load lighter. Blessings and great love, Ben, Ashley and their families.
(Brother Max taking Ben to his appointments at SCCA)(7 month old Ben with his Grandaddy 'Big Ben')UPDATE -- DAY 121
January 13th, 2019
(Ben and Ashley during a regular SCCA visit)Happy New Year and may 2019 bring great joy and healing.
Holidays were good, even great with the family together and good friends around.
(Traditional Xmas eve at Mt. Baker with the family)(Christmas morning with the family)(So darned happy to be together)Ben's best friend from Colorado, Danny made a special trip to visit Ben while he is healing. It gave Ben an opportunity to show Danny his beloved Seattle; and for Danny to get Ben laughing and releasing those endorphins, not to mention someone for both of them to talk to about their car obsessions!
(Danny, Ashley and Ben on the Vashon ferry)Sadly the new year brought a setback for Ben. He began experiencing significant GI graft vs host disease (GVHD) symptoms which left Ben very ill. The treatment has included extremely high doses of prednisone and Tacrilimus plus other meds to suppress his immune system which has brought on even more physically debilitating side effects. What’s next?
1. Tuesday, 1/15th Ben will have an endoscopy (from both ends) to take biopsies of his GI track in order to assess the severity of the GVHD and what the treatment looks like going forward.
2. Tapering of his immune suppression medicine will be pushed back at least two months (so instead of beginning the seven month process in February, earliest will be April).
3. Projected ability to return to work, even part time, could be pushed back at least a month (so April instead of March).
4. His wife, Mom, Dad, brother and sister are adjusting work schedules to spend several days a week with Ben to assist with Ben’s escalated needs right now.
(Ben at SCCA receiving IV fluids due to the increasing effects of the GVHD)This has escalated medical expenses and definitely was a setback emotionally for Ben and his family. That said, Ben is doing everything in his power, with the support of friends and family, to remain positive and looking toward the future.
I know each of you have given so much and on behalf of Ben, his wife Ashley, and his family I am asking if you could increase your prayers, good thoughts, notes and if you are able to add a financial gift now, it will help in so many ways from the small to the big.
Ben is on the next leg of his healing marathon and with the support from us all, he will have the strength to keep going.
God Bless, Ben & Ashley and family.
December 4th UPDATE -- DAY 81
(Ben on his daily walk in his Richmond Beach neighborhood)Day 81
Today Ben turned 81 days post stem cell transplant and he is closing in fast on the 100 day post-transplant countdown toward freedom from 24 hour care! A great deal has been happening since the last update for Ben. The beginning of November brought some tough symptoms that escalated over the first two weeks of the month and ended with Ben in bed and ill on Thanksgiving. Undeterred, his brother, sister, Mom, Dad and Ashley spent Thanksgiving with Ben; being all together was so important. After many tests and a visit with several gastroenterologists it was determined that he had a mild case of Graft vs. Host Disease of the upper GI. Oral steroids were prescribed and luckily, they have seemed to calm things down, thankfully! Ben is eating and drinking again and has gained a .5 kilo in the past week!
(Ben and the Gastroenterologist discussing treatment options)This past week he was able to walk 2-3 miles a day and had an all-time personal best on Friday, climbing 188 stairs at Richmond Beach Park! He’s lost a good deal of his muscle mass, but his oncologist team is thrilled that he is pushing himself to walk daily in order to gain some of it back.
Ben’s blood counts have been consistently in the normal range for a couple of weeks now with the exception of his red and white blood cells. These have been fluctuating between normal and just below normal. The doctors have been continually adjusting the doses for the immunosuppressive drugs and are hoping to have found the best dose.
(One of the many late night visits to SCCA)Today Ben had an echocardiogram and on Thursday, December 6thhe will have a bone marrow biopsy. The results of these two tests will tell us a great deal as Ben and his family begin to prepare for the upcoming discharge from the transplant team in a couple of weeks.
Ben is a miracle in so many ways, and his ongoing positive attitude is what is helping with his healing, we are sure of it. Your prayers, cards, messages and financial support is what is fueling his positive attitude…you are his army of hope and we, Ben and his family, are so very blessed by each of you.
May this season of joy and gratitude be felt by each of you and your loved ones, Ben & his family.
October 18th UPDATE -- Day 35
(Ben, Moma and Ashley via facetime together as Ben receives the first of his bone marrow transplant stem cells)So much has happened over the past five weeks for Ben. September 14th his bone marrow transplant stem cells arrived and were immediately transfused to Ben. This was considered day 0.
(Ben's nurse presents the B+ Bone Marrow stem cells swaddled in a blue blanket to him as a preparation for the transfusion and his 'new birth')He remained in the hospital through September 30th, until the blood tests began to show neutrophils, his mucuscitus had healed enough so that he could eat and drink on his own, and his risk of graphed host disease was able to be managed. Although the four weeks he was at UW hospital were tough as far as the effects from the chemo, immune suppressant drugs and host of other drugs he was on, Ben amazed his doctors and the hospital staff by being discharged a 7-10 days earlier than they projected. We all believe it is his attitude and the love and prayers of his family and friends that are giving him strength to heal and heal quickly.
(Ben's sister Brielynd helping to unpack to get Ben & Ashley's Richmond Beach town-home ready for Ben to come home from the hospital)Ben and Ashley arrived at their new townhome, which had been sterilized and purified in every possible way by his loving family and a host of specialists, on September 30th, day 16 for Ben. He was tired, but happy and was so excited to take a shower and a bath and sleep in his bed. For the next 90 days Ben will need a caretaker to be with him 24 hours a day. His brother Max, sister Brielynd, Mom Deb, Dad Erik, Aunt Judy and of course Ashley are taking shifts over the next few months to make sure Ben is safe, fed, and laughs as often as possible!
(Ben's first week at home, trying to find his tastebuds and an appetite again by hoping to enjoy some of his old favorites)Ben's days are filled with visits to Seattle Cancer Care Alliance for lab work, clinic and doctor visits and concessional scans followed by recuperating time and getting walks in as much as possible. Ben continues to have good news on his tests and labs, which gives us all a boost. He hasn't had any significant complications other than the nerve pain on his extremities, bottom of his feet and hands. He describes it as if you have a 1st degree burn on the bottom of your feet and then you are having to walk on hot coals. The doctors are working hard to find a way to help diminish the pain.
(Aunt Judy (me) enjoys Seattle after Ben's morning at SCCA for lab work and doctor appointments. They got some exercise in at Gasworks Park)(Ben's brother Max shaved his head in solidarity and support for his big brother)BIG NEWS DAY
Today, October 18th and Ben's 35th day since transplant, he received wonderful news. The preliminary results of the bone marrow biopsy Ben had yesterday showed NO FLT-3 leukemia cells! His white blood cells, neutrophils and hemoglobin numbers are almost in the normal range; which is the best and most wonderful news we could get! Ben and his aunt Judy celebrated with a hot donut from Krisply Kreme and a drive to Alkai Beach.
(Ben and Ashley happily watch the sunset from Richmond Beach Park as they celebrate the good news today)There are many days and weeks of healing to go for Ben, and his attitude is carrying him through bouyed by the love, generosity, paryers and support from each of you. Thank you for what you've done for this wonderful young man and his wife. Your financial support has allowed for him to pay for his basic medical costs, living needs, and simple but crucial items like parking at the UW hospital. He is hoping to receive some disability funds at the end of the year, and until then thank you for everything you do. May God Bless, Ben and his loving family.
September 12 UPDATE
(Ashley helping Ben with his new picc-line care) (At UW Hospital)A lot going on these past few weeks. After two weeks of intense testing on every major organ and body part to make sure he was strong enough to withstand the bone marrow transplant, Ben got the thumbs up last week Tuesday and on Friday, September 6th was admitted to UW hospital and started his chemo therapy. The chemo regimen ended yesterday and today is a day of ‘rest’ for his body; that is except for him beginning to receive the immune suppressant medications to allow for his body to not reject the new stem cells. These medications have their own complications :( .
This chemo was so strong it will kill all of his bone marrow and he will be essentially on 'life-support' through continual blood and platelet transfusions until the bone marrow transplant stem cells are accepted by his body and then start to make new neutrophil; which if all goes well will begin to happen in about two to three weeks, and will take a year+ to be at 100%.
Tomorrow, on Thursday, September 13th our Ben will receive the bone marrow transfusion of stem cells and he will be reborn so to speak. When the new stem cells begin to ‘root’ and produce blood, Ben’s blood type will change from O- to B+ (the donor's blood type). So, Ben will be new – literally, a newborn and his new birthday will be September 13th, 2018. I invite each of you to find a way to celebrate Ben's Re-Birth-day on the 13th.
Ben is stable right now with and incredible positive attitude, and as the Chemo symptoms are beginning to start, we pray they are brief and tolerable. We know Ben will be in the hospital at minimum through this month so please keep your prayers, support, kindnesses and generosity flowing because this is what brings Ben and his wife Ashley a few moments of joy each day. You each are a blessing and thank you so so much for continuing to be there for us all!!
Ben’s Address:
Ben DeWees
UW Hospital
1959 NE Pacific St.
Cascade Tower – Floor 7NE, Room 7214
Seattle, WA 98195
(Aunt Carol came from Ohio to support her sister Deb, and to smother Ben and Ashley with her love and laughter)(Ben showing Aunt Carol the boat he captained to pay for college, while strolling the 'docks')(Brothers in B'ham)Ben and brother Max grabbing coffee at a local UW district cafe between Ben's appointments)(Ben's Mom Deb with her friend Cathleen, who opened her home to Ben and Ashley so that they could be close to the hospital through August. You are a blessing Cathleen!!)Deb (Ben and Ashley too for that matter) has asked that I let you know that she fully intends to appreciate and thank each of you overtime for your incredible generosity. You continue to be her army of strength.
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
Ben's Loving Family -
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
August 23 UPDATE
It has been five very full weeks for Ben and Ashley; some good, some frustrating, some tough but laced with great hope, support and an abundance of kindness that continues to keep Ben's attitude positive! Ben's week of Chemo on the 8th floor west wing of UW Hospital resulted in some increased and uncomfortable symptoms that were difficult, but he managed to make it through. Ashley and family were by his side making sure he ate and walked the floor when he could. He was discharged and the two were happy to go to be with family in Bellingham and continue to heal from the chemo. Unfortunately three days later Ben found himself with a fever and was admitted to St. Joe's Hospital where the next week he received numerous tests, blood and platelet transfusions and fluids while they made sure the fever was from the chemo and not an infection. The stay was horrible in that the rooms were dirty, the floors filthy, some of the nursing staff didn't follow cleanliness protocols and the doctors didn't follow Ben's Seattle Cancer Care Oncologists' orders around medications and neutropenic care standards.
(Ben and Ashley at St. Joe's in Bellingham)(Ben in St. Joe's with his sister Brielynd standing by)(Ben receiving platelet transfusion in Bellingham)Seattle Cancer Care had found the only leukemia oncologist in all of Whatcom County to conduct lab tests on Ben's blood and to provide the regular transfusions he needed. This was so that Ben could be at home with his parents in Bellingham and wouldn't need to commute the 190 miles to and from Seattle every other day. We knew this wasn't optimal when the oncologist told Ben on his first visit that he didn't treat AML patients because they needed too much and it was too hard :( .
When Ben came down with a second fever and a strange cough the entire family agreed he needed to go to UW Hospital and stay in Seattle to receive transfusions and care. He was admitted immediately to UW Hospital where he stayed for five days while they ran multiple tests and provided him with blood and platelet transfusions plus numerous antibiotics to ward off any infection. He had a few friends from gradeschool visit: Lea and Natalie. They helped him laugh, thank you friends!! Visitors have become so important to help Ben laugh and share his incredible wit (and car knowledge!)
While in UW Hospital Ben's Mom's friend Shari Campbell brought a special gift all the way from Germany: a rosary that she received on her trip from someone who said it would bring healing for Ben. And the thought and the energy of such a gift has truly been a blessing. It is kindnesses from so many that are supporting Ben and his family in so many necessary ways.GREAT NEWS ARRIVES
On July 30th Ben got a phone call letting him know that a perfect donor match had been found and that his bone marrow transplant date was going to be scheduled for September 13th!!!!! Ben's Mom let out a squeal of delight and the news was cause for celebration! His donor is a 30 year old male who resides in the US. His donors blood type is B+....Ben's blood type is O-; yet genetically they are a match in terms of his body receiving the marrow.
Since then Ben, Ashley and his family have been meeting with his Bone Marrow Transplant Team (He is on the Lime Team), the social workers, the nurses, the nutritionists, the oncologists, and a host of other team members to make sure this intense transplant process is successful and we all are aware of what to Ben will be going through and what to expect.
At the same time Ashley accepted a job as an analyst at Paccar in South Seattle and was to begin her job on August 13th (YAHOO, income and insurance). Ben also learned that August 15th-30th he was to be scheduled for all day tests at Seattle Cancer Care (SCCA) to make sure that most of his organs and biological systems were strong enough to withstand the bone marrow transplant successfully. So far he has gotten an A+ in every category!
What this meant was that we needed to find Ben and Ashley housing in the Seattle area (suitable for an immune suppressed individual and within 30 minutes from UW Hospital). Ben and Ashley had been on the waiting list for the SCCA housing options, but nothing was available. Mom and family looked at every possible rental, airbnb that was even remotely affordable and struck out. So Deb put out the call to all her friends and wonderful WWU alumni for help. Help arrived! Thank you Cathleen for opening your home to host Ben and Ashley through August!! Deb wanted me to share that she was so moved by the ideas, possibilities and offers of help for finding a place for Ben and Ashley - a special appreciation to Tina & Rob, Lynn & Alex, Fritz & Di, Kay, Cathy, Wendy, Scot, Chris, and so many others for helping!
Ben is scheduled to be admitted to UW Hospital on September 6th. He will begin five days of some very toxic chemo therapy to kill all of his bone marrow. He will begin his bone marrow transplant on September 13th and it will be a rebirth in so many ways, one being that in the end his blood type will be B+. He will have 100 days beginning on the 13th to accept the bone marrow, and begin to heal and start to produce hemoglobin, platelets and white blood cells again! He will remain in the hospital through September and then be released into the 24 hour care of his loving family.
There is a great deal to be done over the next few weeks including four mandatory classes for those that will be caring for Ben; but we are all so very excited for what this will bring to our Ben: a complete healing.
You are a such a big part of Ben's healing and team. Your prayers, good thoughts, gifts and support are making all the difference for Ben, Ashley and his family. We appreciate the blessings you are sharing with us and hope to have you with us as the journey continues.
Ben's short term disability support ended this month, which makes your financial gifts so important as they continue to offset a portion of his growing medical costs; truly a blessing.
- Ben and family –
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
July 19 UPDATE
The next leg of this healing marathon begins.
(Ben with Ashley and his Momma in his UW Hospital room)
On Tuesday, July 17th Ben was admitted to UW Hospital to begin another round of chemo therapy called FLAG. He will remain in the hospital for the next 10-15 days for the chemo and observation. Ashley is staying with him and his family is there every moment they can be! His room (above) is called the 'penthouse' because of the amazing view of Lake Union and the many boaters. His little brother Max is working not too far from the hospital so makes sure he has some 'brother-time' daily.
This week he also spent time meeting with his hematological oncologist and the bone marrow transplant team. It was a head spinning experience of information, options to be a part of research studies and possible complications from the transplant. The healing process and rigor of the medical follow up protocols are complex but successful in the end. The one item that is continuing to be a bit of a concern for best treatment options is making sure that his heart is not only back to 100%, but that it remains that way - which we are all happy about!
(Reviewing the mountains of information about bone marrow transplant)
The great news is that they have found several possible bone marrow match donors but will now refine to the best match with further testing which could take up to two months…..once that perfect match is found then they start the process of preparing Ben for the transplant process….more to come on that…
We also learned that his lead bone marrow transplant doctor runs two research labs focused on FLT3 AML, Ben's leukemia type and has been practicing at SCCA and Fred Hutch for over 20 years. His hematological oncologist is ranked in the top three in the world for leukemia; he is in good hands!
The 10 days before Ben had a bit of R&R time in Bellingham in between his regular visits to Seattle for blood and platelet transfusions. Family and friends made sure to visit and keep his spirits high and smile bright!
Ben, Ashley and our entire family are so very blessed by your gifts, cards, thoughtfulness, visits, and of course prayers! This is fueling his positive attitude, which remains impressively strong and allowing him to focus on healing and not worrying.
Your financial gifts continue to offset a portion of his growing medical costs; truly a blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance #uwhospital
July 8 UPDATE
This was a BIG and busy week for Ben, almost like being in a vortex. He and Ashley finally arrived home to Bellingham Monday night, July 2nd after 10 hours of tests, blood & platelet transfusions, and meeting Dr. Estey at Seattle Cancer Care Alliance (SCCA). What a head spinning experience!!! Deborah was so glad to see her own bed & her labradoodle Sweety after five weeks in AZ!
He was back at SCCA on Thursday for a bone marrow biopsy, echo cardio gram, and five hours of blood and platelet transfusions. Ben’s echo cardio gram results from last week were good, showed his pumping strength is back to normal yahoo!! No bone marrow results yet...this week for sure. These results will set the course for the next phase of his treatment.
His neutrophil and hemoglobin numbers continue to go down sadly, which results in his feeling flu-like, exhausted, and neutropenic :(. We’re (mostly Ashley & Ben) are making the 180 mile trek down and back to Seattle Cancer Care Alliance every other day for platelets and blood transfusions (12 hour days). All of this really adds to the stress and complexity, but Ben’s attitude is so very positive and he is happy to be home and surrounded by so much love .
His best friend from AZ, Danny made a special trip to visit Ben while he was at SCCA getting a transfusion. It gave Ben an opportunity to show Danny his beloved Ballard; and for Danny to get Ben laughing and releasing those endorphins, not to mention someone for both of them to talk to about their car obsessions!
Erik did his part today to lift Ben’s spirits by popping the hood of younger brother Max’s car so he could replace a few parts while Ben stood by offering words of auto-wisdom. And, Ben drove Erik’s Toyota Tacoma (Ben’s first driving experience since May) to Squalicum Harbor; that is after Deborah sterilized the entire cab of the truck!
He, Ashley and our entire family are so very humbled by your gifts, notes, ongoing support, help, encouragement and of course prayers! This is sustaining him and us all.
Your financial gifts have already begun to offset some of his medical costs; a blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu #bellingham #seattlecancercarealliance
###### Update 6/30/2018 ######
Great news!!! Ben has been accepted as a patient at Seattle Cancer Care Alliance with collaboration at the Fred Hutch!! He has his intake appointment at 1pm on July 2nd. We anticipate they will schedule his bone marrow biopsy for the next day or two and then will determine when he will be admitted to begin Phase 2, which will require another 4-week hospitalization. In between he’ll be home with us in Bellingham :).
This is GREAT for Ben and the family, and clearly shows the incredible improvements Ben has made in order to formally be discharged. He is very eager and excited to get back to his home state and be closer to his family and friends up there.
He was released from Mayo Friday, back for more platelets on Saturday. Ben’s employer Carvana is flying Ben, Ashley and Mom first class to Seattle Sunday (July 1) morning. Erik, Max and Breezi will meet them with a wheelchair and a van to transport. They’ll have to stay in Seattle, close to Hutch, Sunday night.
Ben will remain neutropenic for the foreseeable future. So mask, avoiding any germs or undercooked foods or fresh fruits, veggies will be in order.
Also, during Ben’s time in the ICU his wife Ashley had to stop working from her recent job in Phoenix in order to be by Ben’s side each day and to move with him to Seattle. This was a very difficult financial decision for them to make but she will begin a Puget Sound job search as soon as Ben is settled. They have expressed such appreciation for the tremendous amount of support that everyone has shown and hopefully are willing to continue to it, to enable Ashley and Ben to move and begin new treatments in Seattle more easily. They are incredibly grateful and know they aren’t going through this long and difficult process alone.
Having said that, Ben and the family are incredibly grateful for his employer Carvana, and the Carvana Buying team for their assistance and support. They are flying Ben, Ashley, and Deborah (mother)to Seattle, as well as moving Ben’s/Ashley’s household from Phoenix to Seattle. Ben and family feel thankful for the continued support from Carvana and everyone that is helping this transition from Arizona to Washington be that much smoother.
Deborah has been with Ben in Arizona since Memorial Day Weekend and she plans to be back working at WWU on July 5th :)!!! I’m sure you all can understand how excited she is to rejoin society outside of a hospital (5 weeks later)…!!!
The outpouring of prayers, cards, well wishes has been sustaining Ben and the entire family; not to mention the financial gifts through GoFundMe. These funds are allowing for Ben to pay for some of the medical bills that are beginning to flow in. A blessing.
Thankful for you all,
- Ben and family –
#family #poika #legend #carvana #thatdidntsuck #joblove #thenewwaytobuyacar #phoenix #az #carvendingmachine
#carvanacountry #ditchthedealership #shakeitup #HQ #state48 #wwualumni #wwu
###### UPDATE 06/20/2018 ######
We wanted to update everyone on Ben's recent improvements with regards to his heart status and leukemia treatments.
He has not had any episodes (i.e., heart failure) for the past two days and getting more energy by the minute. He has been able to move out of bed, do basic tasks, and even was able to walk around the ward a couple times. His energy and spirits continue to grow with the support of the family and the Mayo staff by him . He still is battling pneumonia while on-top of everything else so this Ox is doing quite well despite all the obstacles that are thrown at him.
The siblings unfortunately were not a complete match for the bone-marrow transplant but the clinic is actively looking at the online data base to find a 100% match.
The hope is for him to transfer out of ICU in the next 24hrs which allows him to go off intensive care. His heart and his vitals are showing fantastic improvements.
The full bone-marrow biopsy report came back and unfortunately Ben still has roughly 12% blast cells (leukemia) in his bone marrow. This means that a new round of chemo therapy will be needed in order for him to be in remission ( < 5% blast cells). The goal is for him to get one final biopsy next week in Arizona and then continue his chemo treatment/bone marrow transplant at Seattle Cancer Care Alliance in Seattle, Washington.
His family continues to wish the upmost support from friends, family, colleagues, etc during this difficult time. Each and every dollar that you are able to contribute now and into the future will help pay for these treatments and re-locating him up to Seattle.
Each share and every donation is allowing the world to them and will continue to help ease the transition once the recovery period begins.
Thank you for all the on-going support and prayers and we will update you again soon!
Blessings to you all!
##################### 06/09/2018 ########################
My nephew, Ben DeWees, 30 years old was recently diagnosed with Acute Myeloid Leukemia with a rare high-risk mutation (FLT3-ITD). He just finished his first round of chemotherapy at the Mayo Clinic in Scottsdale, Arizona and waiting for his second biopsy to demonstrate treatment effectiveness so far.
Unfortunately this cancer is really aggressive and the treatment and recovery path are going to be long and arduous. He is awaiting a bone marrow transplant and further chemotherapy treatment. Right now we are praying one of his siblings will be a perfect match!
After the bone marrow transplant, he will be in intensive treatment and round the clock care for several months (minimum of 100 days with no complications) until they can declare him "in remission".
Ben and his beautiful wife Ashley will be moving back to Washington State to complete the bone marrow transplant and further treatment. Fortunately, Ben and Ashley will have a large, extended network of family and friends there to give them care and support.
As I am sure you can imagine, this is not only a physical and emotional strain but also a financial strain. Ben has only been at his job for a year and half and Ashley, who just graduated college in May, started a brand new job in the midst of all of this. To be honest, Ben and Ashley don't have enough money to cover the out of pocket medical expenses (minimum $6500), moving expenses, and basic living expenses while Ben is in treatment and recovery.
If you are able to support Ben and Ashley, please consider donating to this cause to take this worry off of their minds and let them focus on healing and recovery. Please also continue to pray for Ben, Ashley and his family - they can feel all the prayers, support and love!
If you would like to help in other ways, feel free to send me a FB Message. Thank you and may God bless you abundantly!
PS: To help me get the word out, you can share my link to your Facebook Timeline!”
Organizer and beneficiary
Judy Woodburn Weilmuenster
Organizer
Huntingtown, MD
Ben DeWees
Beneficiary
