Sunday, October 28, 2012

Sean's Journey with HLH

Our recent publication in the Philadelphia Inquire has led us to connect with the Fischel Family from Moorestown, NJ. (See publication here)

This is Sean's story from his write to unite campaign that supported the Histiocytosis Associations campaign to raise awareness and funds for histio research. Below are some updates on him. Please keep him in your prayers. He is an ECMO warrior just like me! He has developed an infection and is battling that and HLH while on chemo. Please pray!
This September, Sean was a normal, happy, healthy boy beginning his first grade year and celebrating two new front teeth that came in over the summer (just in time for this school photo). A soccer and street hockey player, novice wrestler, and even a student of sailing, Sean tackles everything with a sparkle in his eye and a caring heart. When he developed a high fever, it was monitored by family and doctors; but wasn’t of great concern, nothing out of the ordinary for a child this age. What we didn’t know was that the fever was the beginning of a very frightening journey in which Sean and his family are now living. 

Sean’s rapid decline included multiple organ failure, several cardiac arrests and finally a diagnosis of HLH, an extremely rare disorder of the immune system effecting only 1.2 children per million. Sean is now fighting for his life at CHOP hospital in Philadelphia, one of the few hospitals in the country equipped to treat this disease. His team of doctors and support staff are remarkable and Sean’s family is facing each day with guarded optimism as they watch Sean’s slow progression. The physical and mental anguish is overwhelming; but, every day that Sean is with us is a blessing and sign of hope for the future of this beautiful boy.

We still have a long way to go with understanding this disease. Every new day presents another difficult challenge for Sean; but he is a warrior and is fighting hard as he confronts this disease head-on.

Leave an encouraging note for Sean!

Update 10/27:Please, fb friends and family, keep praying for Sean to recover from this unexpected illness:

4PM marks the time exactly 28 days ago, that we arrived to CHOP via helicopter. I didn't think we'd make it this far and at the same time I didn't think we'd here this long. This journey has been so painful, tumultuous, and unexpected. We have so far to go. Sean is a warrior! He is like David in the face of Goliath. In a world where many give up, he is persevering! He is truly fighting for his life daily! He amazes me everyday!

Sean's body CT scan did not reveal anything new! There were no new areas of infection. His fever has broken today and his vitals look good. This kind of infection however, is very slow and difficult to cure in the setting of being immunosupressed. It has also set back the treatment of HLH as his chemotherapy and steroids have be significantly reduced. There is such a fine balance that changes daily with HLH on one side and Infection on the other. Both are ravaging his body.

Thank you so much for your love, prayers and support.

Update 10/28:Sean had a stable quiet day. He opened his eyes this morning in response to me talking. It's the simple things that make me so happy.

Update 10/29: Seany has a lung thoracoscopy tomorrow to see the extent of the fungal infection and to wash it out. Praying it is not invasive (in his lung tissue) or he is going to need surgery to remove part of his lung! He is running a fever again and has elevated blood pressure and heart rate. Pray again!

Update 10/30: Sean came out of surgery well. Results however were pretty bad. He has invasive fungus in his chest wall, on his entire right lung and on his diaphragm. Not sure how we are going to proceed...we have a meeting soon with Oncology, rheumatology, infectious disease and surgery to discuss the best of the worst options. Again a fungal infection cannot be eradicated unless you have your own immune system...however his own immune system has been causing all this nearly fatal damage.

Update 11/1(From Sean's Mom): "Days in the PICU are filled with so many ups and downs that I feel like a schizophrenic! I find myself watching Sean's monitor (Heart rate, BP, Temp, Venilator etc) like TV. Still love doing all his dressing changes and washing his now bald head.--- Fungal infection is the most imminent threat. Without an immune system it is fatal. His immune system however poses the same threat. Doctors decided to stop suppressing his immune system with chemo. They are also going to trigger it by transfusing donor granulocytes (WBC). Their hope is that it attacks the fungus and not Sean. Love my prayer warriors!"

Update 11/5 from Sean's mom: As I head to bed tonight at the hospital, I wanted to let you know that Sean had a good day!! His white blood cell count is so robust that the transfusions have been halted. He's been fever free for 24 hours. His blood pressure hasn't been fluctuating out of control. His skin is healing really well. And his ventilator settings are being weaned aggressively. The Lord is answering prayers. I can feel it and I believe it. It seems that Sean's fight has a bigger purpose. The Lord is inspiring so many people to come together. Thank you so much and keep praying!

Update 11/7: Big day...Another MRI of his brain to be followed by a spinal tap to deliver his chemotherapy directly into his cerebrospinal fluid. He was extremely agitated this morning but then calmed down and seemed to enjoy his ride to the MRI floor. There is a chance they may extubate (take him off ventilator) tomorrow if his weaning goes well. His fungal infection vs the HLH are in a precarious balance.

Update 11/10 from Sean's mom: Sean was extubated (This means his breathing tube was taken out) on Thursday and spoke his first words in 44 days!! He said "My belly" in response to what hurts?!!

Update 11/15: Sean has gone from "being the sickest kid alive in CHOP" to trying pull a "jail break"! He somehow managed to shimmy out of his bed with his respirator, feeding tube and med lines being pulled out in the process. The nurses and Brian found him on the floor unhurt. He told Brian in his tiny soft voice, "I want to go home, Daddy take me with you." My tiny warrior continues to fight! We have at least two big procedures coming up at the end of the month to fix some of the damage to his body. He will probably be fighting the fungal infection for months (hopefully without surgical intervention). Then we hope we are stable enough to move out of the Intensive Care Unit to the Oncology floor to treat his HLH with Chemo before Christmas. Faith hath no Fear! We continue to see miraculous improvements. Please keep praying!

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