Owen’s Story

1375076_10153366882920524_1507921968_nIn early April 2013 Owen Hogan was your typical 22 month old kid; enjoying walks in his wagon, playing with his Thomas the Train play set, swinging on the swing set at the nearby park. Owen’s parents, Kathleen and Tim, were in the middle of moving houses and eagerly anticipating the arrival of a little brother for Owen the following month.

Owen’s parent’s noticed that he was developing some bruises, but figured they were results of Owen’s typical toddler rambunctiousness. Then bruising began to develop in places not associated with falling, like the back of Owen’s legs. Small dots appeared on Owen’s skin, like in an allergic reaction. Kathleen and Tim researched Owen’s symptoms, but wanted to wait to speak with Owen’s doctor before getting too worried.

1000871_10153019795505524_1535795222_n

After blood tests and a bone biopsy, there was reason to be worried.

In April 2013, Owen was admitted to the hospital and diagnosed with severe aplastic anemia- a bone marrow disorder in which bone marrow stops producing blood cells. This rare and serious condition left Owen with low blood cell counts, hemoglobin, and platelet counts that make him very susceptible to bleeding and infection. At that time Owen’s parents were told that there were three possible outcomes with Owen’s diagnosis: a full recovery with treatment, partial recovery (in which his body would start to produce some blood cells, but still require treatment), and no recovery; in which his body did not respond to treatment and could succumb to the disorder.

1010872_10100213649107539_1739755311_nDuring Owen’s first hospital admission, his brother Ethan was born. There were hopes that Ethan’s cord blood would be a match for Owen, as stem cells from a related donor are the best option for transplant. Unfortunately the cells were not a match. No one in Owen’s immediate family was.

April 29th, Owen received his first red blood cell transfusion. In addition to having an extremely rare disorder, Owen also has a rare blood type. He is O-, which means that the only blood type the doctors would be able to transfuse would be O-. Owen had a Broviac catheter ( a semi permanent IV site) to allow the medical staff to draw blood and administer medicine without having to constantly stick him with a needle. The procedure went well.

Two weeks later, the diagnostic tests came back negative, leading Owen’s doctors to the conclusion that his own immune system was attacking the marrow.

1175218_10100192294297749_21312642_nMay 15th, Owen was then transferred to Cohen Children’s Medical Center at LIJ, in New York, where he was admitted to the pediatric hematology/oncology unit and began an intense in-patient immunosuppression therapy regiment. This treatment involved Owen being given drugs to further suppress his immune system in hopes that his bone marrow would be able to correct itself and start making healthy blood again. Owen did experience had some reactions to the medications, which was frightening but expected. He continued to make gains with tolerating his central line and daily nursing care. Blood drives were organized and held in Owen’s name in the local communities.

At the end of May, Owen celebrated his 2nd birthday at home.

Once Owen completed inpatient treatment at the hospital, he was transitioned to outpatient treatment. This meant Owen got to go home! He was still at the hospital multiple times each week for treatment, blood tests, and blood/platelet transfusions when needed, with additional admissions when his temperature reached 100.4 degrees or higher. While being home was a blessing, Owen was not allowed to travel more than 15 minutes from the hospital in case he needed to be rushed in for treatment.

1000975_10100211546396389_1611175691_n

Over the summer, Owen’s doctors watched for signs that he was responding to treatment. He continued to need platelet transfusions 1-2 times a week and blood transfusions about once every 10 days or so.
After over 3 months of intense treatment, Owen’s family received a glimmer of hope. On August 6th, Owen’s neutrophil count had gone up from 80 to 200! While it was not definite, the hematologists believed it could be a sign that Owen is beginning to have a response to treatment. Over the next week, Owen’s blood count numbers held on. Then they began to fall again.

In late October 2013 it was confirmed that Owen was not responding to treatment.

The next step in trying to save Owen’s life is to move forward with a bone marrow transplant. As of today, there is not an available match for Owen.

Kathleen, Tim, and those of us who know and love Owen are asking you to join the National Bone Marrow Registry. Please join and spread the word to family, friends, and coworkers. You could be the match needed to save  a life.

1233353_10100213647735289_1312118903_n

Be a hero for Owen.

29 thoughts on “Owen’s Story

  1. Teresa

    Hi Kathleen & Tim, I was curious to know what blood type Owen is since I believe this is a factor for a transplant.

    I have Owen in my prayers,
    Teresa

    Reply
  2. DENNIS

    hi. too old to donate bone marrow. but I’m going to donate blood or platelets on sunday. can I donate it to Owen. I”ll ask at the blood drive if you know let me know.

    Reply
  3. Jaimie D

    Just heard about little Owen! I’m on the bone marrow registry, and I know it doesn’t matter, but I am O- also. Please let me know if there is any way to guarantee that I’m not a match for Owen!

    Reply
  4. Danielle

    Hello,
    I recently heard of Owen’s search for a hero via a friend’s Facebook post. His story immediately captured my heart. As it turns out, Kathleen is a former co-worker of my mother. I will help in any way I can. Please contact me with the details regarding donating.
    Praying for Owen,
    Danielle

    Reply
    1. Rachel Post author

      Hi Danielle,
      Thank you for your prayers and your willingness to donate. You can join the National Marrow Donor Program (the national registry) through bethematch.org or through deletebloodcancer.org. You can also join at a bone marow donor drive in your area. You can find a drive local to you though the links at the bottom of the “Join the Registry” page here. Thank you so very much. If you need more info, please let me know!
      Rachel (site admin)

      Reply
  5. Lorraine

    Tim and Kathleen,

    I saw your story on PIX 11 this morning and my thoughts and prayers are with Owen and your family. My younger sister had aplastic anemia when she was 5 and had a bone marrow transplant. She’s 31 years old now and very healthy. I hope her story gives you faith and strength.

    You may already know about the Aplastic Anemia & MDS Internation Foundation: http://www.aamds.org/about/aplastic-anemia. If not, hopefully they can be an additional source of
    strength and help.

    I will be going to the Bone marrow drive in Paramus on the 10th and encouraging my friends to do the same.

    Lorraine

    Reply
  6. Katie

    Hi,
    I donate blood regularly and I remember the woman taking the blood mentioning something about HLA in conversation..if I ask her what mine is will she be able to tell me so I can tell you for possible match or not??

    Txs and praying for lil man Owen, xo
    Katie

    Reply
    1. Rachel Post author

      Hi Katie,
      HLA typing is typically not a part of the blood donation process. At this point, the only way that Owen’s doctors are able to tell if you are a match or not is if you register with the National Marrow Donor Program (the group that maintains the national registry) which they search daily for a match for Owen. You can get more information about joining the registry at http://www.bethematch.com or deletebonecancer.com. Thank you!

      Reply
  7. Christina

    Hello, I just wanted to say my daughter had severe aplastic anemia. She was five when she was diagnosed. They said she only had a few days to live. That was in 2007. She successfully had a BMT in Feb 2008. She is doing absolutely wonderful. She is a happy 11yr old. Her brother was a perfect match for her. I know you will find your sons perfect match and he will do just as well as my daughter. Just out of curiosity, are non family member children allowed to donate bone marrow. All of my children (I have 4), were tested and just 1 was her match. Or do they just want adults to register. I am not on the registry because they said as her parent, the odds of a match were not common. I would be more that happy to let your doctors check the kids tests. My daughter was treated at Schneiders children’s medical center.

    Reply
    1. Rachel Post author

      Hi Christina, Thank you so much for sharing your story. I am so very happy that she had a positive outcome from such a dire diagnosis! Stories like your share encouragement and hope that is very much appreciated. Non-family members are allowed and encouraged to donate! No family members are a match for Owen. At this time, Owen’s doctors are seeking a match through the National Marrow Donor Program which only accepts registrants 18-55 years old. Thank you so very much for your offer and encouragement!

      Reply
  8. Kris Costa

    Hi, I am from NY and grew up around the FDNY. I am now spreading the word of your situation in AZ and through my work with the LLS here. All my prayers for your family and of course for Owen. ~Kris

    Reply
  9. Elizanneth

    Good morning, I am trying to find a contact # to get an answer. I am 5 months pregnant and I would like to know if I can be the donor! I already order the swab kit; but I really would like to help Owen. Please let me know so I can start doing what I have to do! Thanks

    All my prayers go to this beautiful child.
    God bless him and his family always.

    Reply
    1. Rachel Post author

      You can certainly register to be a donor while pregnant, however, you cannot donate until after your baby is born. Thank you for your willingness to help and prayers!

      Reply
      1. Elizanneth

        Can the umbilical cord be tested?? I would like to know this because I know few friends of mine that are pregnant and are due before me, VERY SOON. Would that be a possibility that they can save his life?

        Reply
  10. Dawn

    Owen’s story is getting out there. Read it this morning and just signed up this morning to be a donor. He’s in my family’s prayers!

    Reply
  11. PK

    I’m on the registry. I joined when I was in probie school for FDNY (E53). I married a girl from the West coast and now I live out in the Bay Area. I saw Owen’s story on the Rant and I really want to help. I also have a 2 year old and a new baby and I can’t even imagine what you guys are going through. I’m going to be holding a marrow drive for my department soon (Berkeley FD) and from there I’m going to try and spread the word here in California. Good luck and stay strong.

    Reply
  12. Bonnie Evans

    Dear Tim and Kathleen,
    One of my neighbors has a five year old daughter who will undergo a Bone Marrow Transplant in a five months.. They would like to communicate with you. My email address is (email passed along to family). The mother who is trying to reach you is Jane Bailey Ward. No one can understand another parent’s challenge like another parent In the same situation.

    I am hosting a Bone Marrow Registry Drive on 12/3 in our area of Atlanta. It was because of the drive that Jane Bailey Ward reached out to me.

    Much thanks,
    Bonnie Evans

    Reply
  13. Mic

    Hi! I just read Owen’s story today and I can’t imagine what you guys are going through. I am from the Philippines and I am just curious if we, living outside US, are capable of helping?

    Owen will be included in my Prayer’s!

    Reply
  14. Jen

    Hi, I was looking at the registry and I was wondering if I joined the registry, i can specifically state that I want to donate to Owen. This is my first time donating and the website, for what I understood is a national list. I just wanted to make sure if I registered, if Owen would be the first person they would try and match me with. I want to help.

    Reply
    1. Rachel Post author

      Hi Jen,
      Owen’s doctors are searching the national registry for a match daily. You understood correctly, registering puts you on the national list. By joining doctors will be able to see if you are a match for Owen, or someone like him in need of a life saving transplant. The group that maintains the registry will not be sending out your results to anyone specifically, however the doctors will have access to your data to see if you are a match for Owen.
      Thank you for your willingness to help!
      Rachel Keenan

      Reply
  15. Pingback: Former FDNY Firefighter Steve Buscemi Joins Bone Marrow Drive for Firefighter's Son | Firefighters Worldwide Playground

  16. Pingback: Former FDNY Firefighter Steve Buscemi Joins Bone Marrow Drive for Firefighter's Son | Firefighters Worldwide

Leave a Reply

Your email address will not be published. Required fields are marked *