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Owen Update 9/24/14

Thank you FDNY’s Lil’ Bravest! 10669134_1558282541069340_4302231932551359687_o

The firemen of Engine 84 Ladder 34 created this group, in honor of their fallen heroes Rory O’Flaherty and John Sullivan. When they heard of Owen’s story, they immediately asked how they could help. We had just begun to rent a house to be near Cohen Children’s Medical Center and they helped transition a dingy bedroom into a great play room for Owen. Because he was on isolation and for the first time not allowed to go to playgrounds, see his friends, go to music class, or be outside in the sun and heat, this play room became the only space he had to really have fun. We are so appreciative of the help we received from Lil’ Bravest. Right before we transferred Owen’s care to Philadelphia, we had the opportunity to visit the firehouse of Engine 84/Ladder34. Owen got to meet some of his heroes who were directly responsible for months of happiness in his amazing play room space. They truly made a tremendous difference in our lives. Thanks Lil’ Bravest!

Before and After!

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Owen Update 8/13/14

From the Hogans:

owenOwen has been doing really well. We were allowed to have 3 weeks off from the hospital!!!!! Longest ever! We filled it with as much fun as possible for Owen and Ethan More restriction have been lifted and his summer just continues to improve! Owen got to swim in a family friend’s pool with Di Di, participate in the Home Depot Saturday crafts with Pop Pop, and be reunited with his best friend, Sofia. We went to a music in the park concert with Grammy and a Dare night out where he got to shoot a fire hose and see a state trooper helicopter land. He got to visit his favorite train station with Grandma and surprise Grandpa at work! Although he is allowed near more people (especially outside), we still are hyper-vigilant and keep him away from most people indoors. Being able to take him out and reintroduce him to his favorite activities has been so amazing Life is feeling a little more normal.
Yesterday, we have a very long visit at the hospital. Owen required getting an IV (which took 2 painful tries in his hand) and his monthly IVIg transfusion (which drips over a few hours). He had a blast doing medical play with Chemo Duck and Lindsay, one of his favorite child life specialists at CHOP! Tim and I were asked to be interviewed to share Owen’s story and he may be profiled on CHOP’s website. We are thrilled to have to opportunity to spread awareness of Aplastic Anemia and to inform many other families about the extraordinary care that CHOP provides to patients and families.
Today is a HUGE day for us. We have officially begun to decrease Owen’s immunosuppressant drug. It will be a slow wean over the course of 3-4 months. During this time, things can go really smoothly and this could the beginning to the end of this extremely long journey. OR during this time, we can hit more bumps in the road that could result in huge setbacks. It’s an exciting and hopeful time for us, and at the same time, it’s nerve-racking and scary as we think of all of the “what-ifs”. We will take it day by day and pray that all goes smoothly.

 

Day +100

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Day +100 and 1 year since diagnosis:
Today we celebrate life.

Exactly 1 year ago, in a small conference room, a Hematologist sat us down and said “It’s Aplastic Anemia.” We had brought Owen to the ER 2 days earlier because of unexplained bruising and tiny red spots on his skin called petechiae.

Two weeks prior to his diagnosis, we had sold our home in Bellerose, Queens. I was 9 months pregnant with our 2nd son. We were anxiously awaiting his birth and our plans to relocate to Rockland County, NY. When Owen was diagnosed with Aplastic Anemia, our world as we knew it crumbled and our battle to keep Owen alive began. Many weeks of this past year are a complete blur. Other days or weeks have been so traumatic, they still bring frequent, vivid flashbacks.

Owen was one month shy of turning 2 years old at the time of diagnosis. He was the most carefree, energetic, and loving boy. He was quickly torn from his safe and happy world and thrown into a mix of unknown places, painful and scary experiences, and limitations that a child should never have to abide by. The day after Owen was diagnosed, Tim and I made the difficult decision to induce labor with Ethan. We were told that a sibling-matched donor for a bone marrow transplant would be Owen’s best chance at survival. Ethan was born into a world of crisis and a week and 1/2 later we learned the devastating news that his cord blood was not a match for Owen.

Owen’s battle began with immunosuppressive drug therapy. After 6 rocky months, it was determined that he showed no response to treatment and he began to have decreased odds of surviving. The only option he had was to undergo a bone marrow transplant from an unrelated donor. A perfect 10 out of 10 donor, on the registry, was contacted. This person reported multiple times that he/she was not available. The search continued. Friends, families, and strangers hosted bone marrow drives to try to find someone for Owen. Tim and I struggled to watch our beautiful boy become more and more at risk of dying as we waited on a stranger to come along and voluntarily save his life. After what felt like eternity, a 9 out of 10 donor was found and stepped forward to donate his stem cells. We finally found our Hero and on January 14, 2014 Owen was transplanted with his donor’s cells. Owen’s life post-transplant hasn’t been easy and we know there are a lot of side effects and complications that can continue to arise. His journey is far from over, but making it to day +100 is a milestone to be celebrated. Throughout this past year, Owen has repeatedly shown us how to value and celebrate the smallest and largest accomplishments. He has demonstrated strength and bravery that is unrecognizable to most adults and has maintained his energetic personality and loving disposition. We are so proud to be his parents and have learned to love him and Ethan in a way that we didn’t know was possible.

Day +97

Owen had a hole in his PICC line today. We brought him in to the day hospital to have it checked out, and they decided to remove his line altogether. This has its good points and bad points. The biggest good point is that having a central line greatly increases the risk of infection, and by removing the PICC, Owen’s risk decreases significantly. Unfortunately, however, now that he doesn’t have a central line (which is a semi-permanent IV site), they will have to stick him with a needle every time they have to draw blood or administer IV medicine.
We had a scheduled IVIg infusion tomorrow, but the doctors and NP were so nice as to let us do it today. It was a long, unexpected morning and afternoon in the day hospital, and they had to stick Owen to give him his IVIg, but at least we won’t have to go back 2 days in a row. Although he cried, he continues to amaze us with how strong he can be.
Oh, almost forgot- the next best thing about not having a central line: Owen took a bath tonight! Not a sponge bath, but a real bath!! He was so happy and excited! He kept splashing around and played with all of his bath toys. (Just to put this into perspective: Owen had a bath on April 21, 2013 and didn’t have another bath in the tub until February 2014, due to the fact that he had a Broviac central line, and we couldn’t get his site wet. After coming home from transplant, he was so excited to be able to play in the bathtub! Unfortunately, though, 17 days later we were admitted again to the hospital, and he had his PICC placed on February 24th- which meant that he, once again, couldn’t take a proper bath. It is incredible how a situation like this really makes you enjoy the simple things in life). Kathleen was in the bathroom with him, as I was trying to put Ethan to sleep- but all I heard were sounds of a 2 year old boy having so much fun.

It is hard to believe that tomorrow marks 1 year since bringing Owen to the Emergency Room at St Barnabas.

Day +95

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Owen is off I.V meds!!!! We have switched to an oral version that is just once a day. This medicine does not taste very well, but we are getting it in. The first dose was a struggle and there were lots of tears, but today Owen was so brave and took it on his own. It’s a relief to not have to access his line twice a day.
Owen and Ethan enjoyed watching the crew teams row on the Schuylkill River today. When we got home we dyed Easter eggs…which resulted in an unexpected load of wash to be done when Ethan spilled blue dye on himself and Tim! Hopefully everyone’s clothes will return to their normal colors! If not, it was worth the fun we had!

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Day +93

CMV cells have decreased again!!! They have dropped from 365 to 166! Almost down to 0!

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Owen has had an exceptionally good week. He is gaining lots of strength and endurance back, and is continuing to gain weight. He is now alternating his right and left feet on the stairs and is up to walking just over a mile! His motivation is to take “Puppy” for a walk each night after dinner…just like our neighbors do in our apartment building.

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On warm days, we’ve walked down to the Delaware River to check out the boats, on the trails by Boathouse Row, and through historical Old City. Owen loves spotting the horse and buggies, duck boats, and trolleys. We’ve noticed a decrease in his leg pain, and his blood counts remained stable.

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Since Owen is now 3 months post-transplant…some of our isolation restrictions have been lifted! Owen’s immune system is still not fully developed (and won’t be for some time), so we still have to be extremely cautious and avoid many people/places. However, we got the green light to take him to some public places…as long as they are not crowded. After our hospital visit, on Tuesday, we brought him to Whole Foods.

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This was Owen’s first time in a public place (other than the hospital), in over a year. I can guarantee that he was the most excited person that supermarket has ever seen! He yelled out the names of every fruit and vegetable he saw and very excitedly said “I want this! I want that!”. It was an overwhelming feeling…both of joy and anxiety to be in public. As soon as I saw I school-aged child, I froze and rushed Owen 3 aisles over! My immediate thought was “It’s a school day and this kid isn’t in school…he must be home sick!” However, Tim brought up a valid point that he may be on a spring break. Regardless, it’s going to take a long time for us to adjust to these “normal” experiences. One step at a time…

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Day +86

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Good news to share! Owen’s CMV count has come down from last week. He is at 365 now. We continue to hope and pray to hear it’s 0 so he can switch from IV meds to oral. Once that happens, we would be able to remove his PICC line. Also, if it decreases to 0, his IVIg transfusions will finish as scheduled. Feeling very hopeful and optimistic for next week’s labs.

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Owen’s hemoglobin level dropped and he’s heading in the direction of another blood transfusion. However, once again…IF the CMV drops to 0 and he’s off IV meds, his hemoglobin may stabilize and/or rise on its own. Owen continues to have leg/foot pain, but we have noticed slight improvements. It appears to be nerve-related. We are hoping it’s just a side effect of meds and it too will go away.
1003404_1473336999563895_2072809078132268230_nOwen was amazing at this weeks visit. We had the wonderful opportunity of FaceTiming with his music teacher from NY during a Music Together class. Owen was so happy to be watching and listening, that he didn’t even cry during his dressing change. This is the first time he was able to sit upright while we removed the adhesive. No holding him down and no tears was a HUGE accomplishment! Thank you Allyson and all of the Music Together families who let us join in!!!
10257996_1473337029563892_1143546611216266117_n1503870_1473337022897226_3431039648225417359_nWe have now been home from the hospital for 24 straight days. This is the longest we have ever been able to be together, as a family of 4, since Owen’s diagnosis, last April. We are in disbelief that we are approaching the 1-year mark since we brought Owen to the ER and this nightmare of a journey began. Lots of flashbacks and unsettling emotions are overwhelming us, but we are so grateful to have each other and to still have Owen with us. We are blessed to have worked with so many amazing doctors, nurses, therapists, social workers, and many other team members that kept Owen alive and doing so well.

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Day +75

Owen is doing very well at home! We are finally starting to get back into a groove and have a good routine going. We’ve never been so happy to cook and clean and feel kind of normal! We’ve begun tackling our endless piles of paperwork, mail, and bills. With that, extreme guilt has come over us for our inability to keep up with writing thank you’s to all of the people who have done so much for us and Owen. We are hoping to make the time and get as many personal thank you’s out as soon as possible. Until then, we hope everyone knows we are extremely grateful for all cards, prayers, gifts, food, phone calls, and love.

 

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Day +73

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We have been home for 10 straight days! So grateful for the much-needed time together.
Tuesday, we had an outpatient visit at CHOP. Owen had a check-up, labs drawn, a dressing change, and an IVIg transfusion. All-in-all we were home after about 6 hours. Owen said “Mommy I’m a little scared” during his dressing change and he cried, but was so courageous. Even when it was hurting and I could see his skin pulling, he squeezed my hand and got through it.

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When we got home, he FaceTimed with Pop Pop and DiDi and proudly reported to them that he was very brave at CHOP! Owen tolerated the transfusion well and did not have any reactions. Our new concern has been his ongoing complaints of pain in his legs/feet. He’s been waking up for several weeks with discomfort in the morning and after naps. He can’t walk well and says they hurt, but is unable to truly localize the pain. The two possibilities that were discussed were neuropathy (which is an effect on the nerves in his legs/feet) as a side effect of medications or a condition called Avascular Necrosis (which is pain in the joints after blood supply has been decreased). Initially, we were going to go for x-rays of his hips, legs, and feet, but we are going to hold off on that for now.

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Owen has increased his drinking significantly, and lab results show his kidneys are doing well. His appetite has increased again and he’s eating very well now. He even gained a little weight! We are so happy with the progress we have been able to make in just 1 week at home. Yesterday, we went to his weekly ophthalmology appointment and they said his eyes look great. No evidence of CMV effecting them. Owen fought the drops a little and said his eyes were burning, but handled it exceptionally well this time. We continue to be so proud of him.

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The best news we have to share is that the CMV cell count has come down drastically. It dropped from 6,000 down to 845. The ganciclovir is working and we are hoping for the virus to be out of his system soon. This is crucial because Owen’s Tacrolimus (immunosuppressant) levels have been too low. For weeks, the doctors have allowed them to be low because Owen has needed T-cells to attack the CMV. However, T-cells need to be suppressed so Owen does not get graft vs. host disease. Hoping the CMV will be gone in a week or 2 and we can relax a little.
Owen was full of excitement yesterday when he was told his new twin cousins have arrived. He painted Liam and Gus a card and kept asking for them to come visit him “right now!”. We can’t wait until his isolation period is over and we are able to travel back up to NY to meet them

Day +67

The last few days have been a roller coaster of stress and emotions. The excellent news is that Owen’s CMV count has decreased again. He went for a chest and stomach CT scan, and they did not show any signs of viruses, pneumonia, or infection. We were able to take a HUGE sigh of relief that nothing was found. Because these tests were all so favorable and there wasn’t much else to test for, the doctors felt that it was best to discharge Owen. We had reservations and concerns about taking him home because his breathing was still not normal. We continue to struggle with finding a way of accepting the unknown.
As we’ve learned (in the world of medicine) if symptoms aren’t getting worse and diagnostic tests are negative, many doctors are satisfied and seem to stop worrying/investigating. It feels like they have a list of things they want rule out and when they don’t know an answer, they accept it and move on. On Owen’s journey, we’ve experienced this when he had a strange episode and stopped breathing, when he had hypothermia for several days, and now as he has this new change in his breathing.
We agreed that since his respiratory rate was the only concerning thing, and given the fact that it had slightly improved, that we should take him home. However, because we are so afraid that the increased respiratory rate and shallow breathing could be indicative of something more to come, we’ve been monitoring his breathing closely as he sleeps. Sporadically, we check his oxygen saturation levels and thankfully, they have been fine. Yesterday and today, he actually seems to be showing small improvements. We hope this trend continues. Since being home, Owen’s appetite has increased significantly, and he is back to eating 3 small meals a day along with some snacks. We think the extra calories and healthy food is giving him some much-needed energy.
Aside from the stress of medical issues, our time home has been incredible, but also challenging. Hospital stays are becoming increasingly more difficult on us, so it is a great feeling to all be under one roof. We are desperate for more time together and to gain some form of normalcy in our lives. But, transitioning home comes with some difficulty as well. In addition to Owen’s current condition, we are living with sleep deprivation, and a 10 month old who is exploring and on the move all day long. Juggling our exhaustion while parenting 2 kids, and attempting to take care of normal life responsibilities (cleaning, food shopping, cooking, etc.) is so exhausting. But, we still want to have fun and make the best of every day we have together. Having said that, in the past couple days, Owen has enjoyed painting on his new easel, baking cupcakes, a walk outside, playing hide-and-seek with Ethan, playing soccer in the apartment, having “band practice”, and dancing to a few of his favorite songs… “Happy” by Pharrell Williams, “Home” by Phillip Phillips, “Hotel California” by The Eagles, and “Brave” by Sara Bareilles. Owen continues to make us laugh and smile even though we are stressed and worn out! We are so grateful for his strength and happiness. (9 photos)