Owen Update 3/16/15

FANTASTIC NEWS!!!!!!!

We just received an unexpected call from CHOP. They reported that Owen’s blood work from last month showed an increase in his IgG level!!!! His doctor told us we could cancel tomorrow’s appointment because he doesn’t need his monthly transfusion!!!!! If the level continues to rise, he will never need a transfusion again! We are ecstatic to have such great news to share!!! Owen is calling everyone we know to tell them “No needle tomorrow”!
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Owen Update 3/10/15

11037471_1631865003711093_5800526212548511770_nOwen has been doing really well! Medically, there haven’t been many changes since the last update. His GVHD of the skin presents similar to eczema and continues to make him itchy and really uncomfortable, at times. He had a pretty bad flare up this week, but it has already improved drastically after using steroid cream and our normal, excessive amounts of Aquaphor! He continues to receive monthly IVIg transfusions (other people’s antibodies) and his blood counts look pretty good! Owen’s 1-year post BMT appointment was extremely long, but went really well. His echocardiogram and EKG showed his heart was normal. All other labs and tests also came back with positive results! Owen continues to be on therapeutic levels of his immunosuppressant, so we must continue to limit contact with people, especially other children and public places. Although, we are used to these restrictions (for almost 2 years now), the past few months have been especially difficult. We welcome the warmer weather so we can escape the house and enjoy the outdoors more often!

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Owen Update 1/15/15: BMT + 1 Year!

10479702_1607765192787741_7181653121149506856_nToday is the one-year mark of Owen’s bone marrow transplant. On January 14th of last year, Owen got a second chance at life when he received his new stem cells. It is incredible to think about how far he has come, both from diagnosis and from his transplant. 1-year post transplant is a huge milestone and significantly increases the statistics of Owen’s prognosis for surviving. Reaching this milestone renews our hope for a healthy future for him.
We are so thankful and grateful for all of the love and support we have received throughout Owen’s journey. Today we took the time to think about all of the people who were an integral part of our lives since Owen was diagnosed with Aplastic Anemia. The list is truly incredible.
We are most grateful for Owen’s hero donor. We hope to meet him one day in the near future, so he can see how thankful we are for keeping Owen alive.

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A New Year’s Eve Post – 12/31/14

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As 2014 comes to an end, we can…without a doubt…say that it was the most difficult year of our lives. January 1, 2014 was Owen’s last full day at home before being admitted for his Bone Marrow Transplant conditioning, on the 2nd. He had absolutely no immune system, he was surviving on weekly platelet and blood transfusions, and his prognosis was poor. Only immediate family was allowed to see him prior to being admitted. No one had any idea what the year would hold for us, but everyone knew his condition was not good and the statistics for surviving were terrifying. The image of each grandparent, aunt and uncle saying goodbye is still so vivid in our minds. Everyone knew they would not be allowed to see Owen for a minimum of a month… but the reality was no one knew if they’d ever get to see him again. Everyone’s last hug with Owen, before saying goodbye, had a slightly tighter embrace and lasted much longer. They tried to be strong for Tim and I, but we could still see the fear and the tears that welled up in their eyes. I remember having to walk away each time and hide my own tears. Owen’s last hug and kiss before leaving the house was to his little brother, Ethan. I tried so hard to be positive and make myself believe that everything was going to be ok, but I couldn’t shake the overwhelming thought of, “What if Ethan never sees Owen again? He’s just a baby and may not ever know his big brother”. The thought was heartbreaking.

Although 2014 did not have a great beginning for us, it is ending on a much different note. The year is best described as a roller coaster with the lowest of lows mixed with amazing celebrations and accomplishments. Although Owen isn’t cured just yet, his prognosis for living improves month after month. No matter how many bumps in the road we’ve hit, we continue to gain momentum on the road to recovery and are filled with so much more hope for a happy and “normal” future for our family. Our journey in 2014 has taught us a much deeper appreciation and understanding of gratitude. No matter what we’ve been through, we are acutely aware of how grateful we are for everything and everyone we have in our lives. We have received the most tremendous amount of support and generosity from both loved ones and strangers. It has literally carried us through the most trying times and has made us find strength in ourselves that we didn’t know existed. For us, this year has highlighted the good in people and in our community.

The most amazing part of 2014 is how we’ve learned of the ways Owen’s journey has inspired others. Owen is alive and with us today because a stranger from the Bone Marrow Registry donated his stem cells. As we approach the 1-year post transplant date, we become increasingly excited at the prospect of meeting Owen’s hero, who saved his life. Equally important, we’ve learned that Owen’s journey inspired well over 2,000 people to join the National Bone Marrow Registry. From that group, we are thrilled to report that 2 friends were matches and have already donated their marrow and have saved 2 more lives. A friend from college, Liz, donated her stem cells on July 25th and saved the life a woman with Lymphoma. And a family friend, Dave, also donated his stem cells peripherally (similar method as donating blood) on December 6th, and saved the life of another patient. We hope to continue to inspire more people to swab their cheeks and join the registry throughdeletebloodcancer.org or bethematch.org and help save the lives of many more people in need.

As 2015 begins, we have a renewed sense of hope and look forward to our future. We are starting the year with medical clearance to move away from CHOP and back to NY. We’ve purchased a home and can’t wait to move in after necessary changes are made to make it safe for Owen! We will finally be together as a family full time and not living out of bags and boxes and traveling so much. This move will be our 4th move in the past 2 years. However, it is the first time we are choosing where we want to live and it’s not a location dictated by the need to be close to a hospital. It’s perfect timing to begin the new year with a fresh start. We hope it’s the first of many positive changes in our lives.

We hope this new year is full of happiness, hope, peace, and joy for everyone. Thank you, from the bottom of our hearts, for your love, prayers, and support.

The Hogans

Owen Update 12/11/14

1510717_1592237621007165_9094874167595659432_nThe roller coaster continues. Owen was exposed to a virus and has been sick for 13 days now. We have been a mess worrying about how well his body can fight off the virus since he is still on immunosuppressants. It’s difficult to see him not feeling well, but luckily he has been able to continue to be at home and continues his outpatient visits to the day hospital. Owen’s IGG level was too low and the decision was made to restart monthly IVig transfusions (other people’s antibodies) that will continue through the entire winter. We continue to struggle seeing him get stuck by needles and going back to needing IV’s placed while at the hospital.

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This time of year is especially difficult. It’s still so fresh in our minds how we spent last Thanksgiving in the hospital and last Christmas not knowing if Owen would survive after another round of ATG, chemo, radiation, and his bone marrow transplant. Although he is sick, we are so grateful to be in a much more stable place with him. As Christmas approaches, we have been trying to focus on our gratitude for all of those who have donated and kept Owen alive with blood, platelets, and antibodies and for Owen’s hero donor who saved his life with his stem cells. Our hearts are heavy with the memories of the children we’ve known and lost over the past 2 years and pray for all those still battling, just like Owen. Holidays in the hospital are difficult on all families. A huge thanks to all hospital staff and thank you to all those who donate their time to bring some cheer to patients and their families

Owen Update 11/19/14

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Over the past few weeks, Owen’s CMV level continued to be a concern to us. It jumped up and almost caused him to be admitted to the hospital for IV treatments. Thankfully, as we took him off his steroids and put him back on Valcyte, the cell count dropped significantly. This week, we were so relieved to hear his count was 0 AND he could skip his weekly hospital visit!!! When I told him we weren’t going to CHOP, he immediately translated the news by asking “So, no needles this week”? It was a sweet, but sad moment. We are all struggling with how long we’ve been on this journey and with the unknown amount of time that still lies ahead of us. Owen’s GVHD of the skin has been fluctuating. However, he’s had more good days than bad, even off the steroids. We are extremely thankful for that!

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As it’s cold/flu season, we’ve been limiting contact with most people/places. But, we were able to enjoy a little bit of time at a small carnival. Of course, I looked completely insane to other parents as I scrubbed every ride down with Clorox wipes before Owen went on! Regardless, we all had a great time!

11/11/14 Be The Hero For A Hero Fundraiser

10702189_1579172428980351_1485723359248558026_nTim and I had the honor of attending a Be The Hero For A Hero fundraising event this past weekend. This non-profit organization has made it their mission to save lives by promoting the National Bone Marrow Registry, aiding families, and spreading awareness. It is comprised of a group of amazing people who have been a HUGE support system for our family. Be The Hero For A Hero was created in honor of FDNY Firefighter Roy Chelson, who developed Multiple Myeloma as a result of his dedication to the WTC site from 9/11. Although we never met Roy personally, Tim knew of him…as he was “legendary in the FDNY”. As we learn more about him and hear stories from friends and family, it is clear that he was a one-of-a-kind, absolutely amazing guy. Like many people suffering from life-threatening illnesses, Roy needed a bone marrow transplant, but was unable to find a match and lost his battle on 1/9/11. When Owen was diagnosed, we received a call from Trish, Roy’s wife. From that day forward, she kept in touch with us, gave an extremely generous donation, and most importantly, helped spread the word of Owen’s need to find a match for transplant. At the fundraiser, we got to meet many people who follow Owen’s journey and a firefighter who also had Aplastic Anemia and a bone marrow transplant last year. It was an emotional evening and we felt so much love and support from everyone there. As baskets were raffled off, Owen’s name was called to receive a beautifully crafted, hand-made dresser (even though we did not have the winning ticket). We later learned that everyone who entered for that prize, wrote Owen’s name on the back, so he could have a special gift. Words can’t describe how grateful and thankful we are for the generosity and thoughtfulness of others. We really don’t think we could have made it this far without so many people helping us along. Please check outwww.betheheroforahero.org to learn more about this incredible group with a life-long mission that we share…to save more lives. They have ongoing fundraising through Gymboree, a solar company, and jewelry. Their site has lots of great info on registering for the Bone Marrow Registry. They have set a goal to get an additional 1,000 people to join the list this year!

This photo was from April of this year. Owen was wearing his Multiple Myeloma shirt in honor of FF Roy Chelson and FF Jimmy Martinez (who is still searching for a match for transplant).

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If you shop at Gymboree, Crazy 8, or Janie and Jack, please use the Be the Hero For a Hero link. The stores will donate 10% of all purchases towards their mission to help save lives! Please share with friends and family!

This is the link: http://bthfah.onlinefundraiser.net/

Owen Update 10/21/14

Owen’s GVHD of the skin has increased and he was put back on steroids today. The CMV also came back 2 weeks ago and the cell count has risen. His IGG level is barely making the cut, so it will be decided this week if he needs to receive IVIg transfusions again… If he does, he will need IV’s and monthly transfusions (of donated antibodies) for the duration of the entire winter. This bump in the road is scary for us as cold/flu season is beginning. We have to go back to taking more strict precautions and limit Owen’s exposure to people/children.

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This past week, we met a very special train conductor who allowed Owen to see the one and only real Thomas the Train Steam Engine. Owen and Ethan were so excited to see the huge engine in real life! Their smiles were priceless and Owen is still talking about it! Thank you Conductor Rick for being so thoughtful and bringing so much joy to our family!

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Owen Update 10/10/14

10659431_1565627677001493_759445389214380549_nOwen is approaching the 9 months post-transplant mark. Unfortunately, we’ve hit some more bumps in the road. We’ve had a few scares in the past month including a 1-time decrease in his hemoglobin, finding swollen lymph nodes on his neck, blood in his stool, and an increase in his GVHD. Some of these issues have been resolved, but these changes have kept our anxiety and stress level pretty high. Owen went on a 5 day course of oral steroids and his GVHD of the skin showed a positive response. However, after the steroid stopped, the itchy, rough rash reappeared all over his body a day later. We had to stop the immunosuppressant wean and go back up to a therapeutic dose. Trying to stay hopeful that the GVHD does not get more severe and resolves itself quickly. We know it could take weeks or many months. Only time will tell. We have gone back to weekly visits at the hospital.

Please say a special prayer for a little warrior, Sophia. She had her bone marrow transplant the same day as Owen and last month her transplant failed her. She is a strong and beautiful little girl who is so brave. On Tuesday, she painted sea turtles with Owen before getting her T-cell transfusion. Please pray that this next step works and helps her back into remission.

🙂

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