Big family-The Williams (The eldest son not in the photo) | Mum taking Josiah home
April 28 this year is a day to remember for Josiah, his family, friends, and many others who have been following the development of his story.
On this day, Josiah is receiving a bone marrow transplant. The red marrow blood symbolizing the color of life flows into Josiah's body drip by drip through the central line. It carries Carrilynn, his mother's unwavering love for him, as well as her trust and hope in God.
In the Beginning
This boy captured her heart the very moment she saw him. He suffered from congenital spina bifida and was not able to walk. Abandoned by his biological family at birth, he had lived in an orphanage in Jiaozuo, Henan Province for 6 years until Carrilynn and her husband Tom adopted him in 2014. Since then, he and his 6 other adopted siblings have been living happily as a big family on a small family farm in Indiana that they call "Noise of Joy".
Misfortune Strikes
However, misfortune struck the boy again. Earlier this year, Josiah suddenly fell ill and was diagnosed with severe aplastic anemia. A bone marrow transplant was his only way to life. After many challenging searches, doctors finally found a donor with an 80% match. Although the match was not perfect, the transplant proceeded for it cannot be delayed any longer due to Josiah's grave condition. He has endured the painful myeloablative chemotherapy and radiotherapy as well as various side effects in order to receive the bone marrow transplant today.
A Hopeful Start
The two weeks following the transplant proved to be gruesome and full of emergency episodes. In the isolation room, Josiah had many catheters inserted all over his body, and he had a constant high fever. Due to the lack of immunity, various infections lead to urethral hemorrhage, abdominal pain , diarrhea, and oral ulcers. He was unable to eat and was only kept alive by infusions. The only comforting news is that the bone marrow biopsy showed signs that new blood cells were being regenerated. His white blood cells, especially neutrophils, started to climb. By the third week, the test report showed that 98% of his blood cells were from the donors, and the white blood cell count rose further. If his condition were getting stabilized, he would be discharged from the hospital soon.
A Bumpy Road ahead
However, things turned from better to worse for Josiah. He continued to suffer from various complications for the next two months. He kept having high fever episodes and his mucositis and urinary tract infections caused excruciating pains. The doctor had to prescribe six different pain medications. The inserted nasogastric tube exacerbated his nausea and vomiting, making it very difficult to feed him food and liquid. In addition, he needed platelet transfusions to aid in blood clotting. His doctors also feared that he would develop graft-versus-host disease that could undo all their effort as he was such a high-risk patient.
In the past, Josiah had dealt with frequent treatments for his congenital spina bifida with cheerfully and positive attitudes. However, this time, the prolonged hospitalization and various side effects from his medication left him downhearted and depressed. He felt that all the treatment was only to make him feel worse and that he would never be discharged from the hospital or be with his family.
Turning the Corner
Nonetheless, the treatment was turning the corner. By mid-June, Josiah's white blood cells and platelets had reached the safe zone, just waiting for the red blood cell index to climb. His physical condition is improving, and the number of catheters on his body has been reduced to 3. Doctors allowed him to be discharged. Although not going home yet, they were moving into a hotel family suite near the hospital. The care staff brought all necessary medical equipment to the hotel room and trained Mom how to maintain the central line and administer his daily infusion. Carrilynn practically took on the role of her son's personal care nurse, caring him fulltime. What made Josiah happier is that his older siblings could take turns to visit him and keep him accompany each week.
At the Bottom of Despair
At the end of June, Josiah went to the hospital for his regular follow-up. He was expecting some good news, instead he got the worst. All of his cell indexes dropped a lot, back to the danger zoon! After further tests, doctors found that his body immune response is acting abnormally and attacking normal cells. It almost wiped out his new blood cells. What a devastating blow to him and his family! They checked in the hospital ward again. For the first time, the children saw their mother crying. Mom in their eyes was always the one in the family who could handle anything, and nothing could be too difficult for her. This blow was just too much to endure, and she was in despair!
However, Carrilynn just loves her boy too much to give up. Working with the doctors, they have developed a short-term treatment plan trying to save Josiah's life. The plan includes chemotherapy and plasmapheresis, simultaneously evaluating the feasibility of repeated bone marrow transplant. Josiah has yet to recover from the last transplant and is still suffering from constant abdominal pain and nausea. Now the new chemotherapy is making everything worse. His numbers change direction each day and different side effect occurs unexpectedly. This fourteen-year-old boy has suffered so much pain that he can bear no more. He now lives in the limbo and in fears. Hope seems to be fading away and he could not help wondering when all these will end.
The cytomegalovirus is coming back aggressively, and the medicines lead to more and more serious side effects - kidney damage, electrolyte loss, blurred vision... In addition, doctors found his stomach swollen with a collection of dead blood cells. And herpes virus has re-emerged...
A Glimmer of Hope
In a rare moment when Josiah felt better amidst all the ups and downs, he was seen on an August day playing card games with his mother and enjoying some music. They chose to sing together Way Maker with the following verses:
Way maker, miracle worker, promise keeper
Way maker, miracle worker, promise keeper
Light in the darkness, my God
That is who You are
Even when I don't see it, You're working
Even when I don't feel it, You're working
You never stop, You never stop working
You never stop, You never stop working......
They sang so loudly that nurses came over for this impromptu concert.
The song resonates deeply with Mom and Josiah. For more than half a year in the hospital, the mother watched Josiah going through all kinds of pain and sufferings feeling as if a knife cutting through her own heart. New symptoms with worse side effects occurs each day with one bad test result following another. All these mean they will have to stay in the hospital longer. They have not been able to go on holidays and to celebrate birthdays with their family. The plan for family summer vacation has been dropped. Mom is also missing terribly her children left at home and is overcome by a sense of guilty for not being able to take care of them herself. But the mother and family all agreed that Josiah needed her presence and care even more at this moment. The family are all united in heart and mind in supporting Josiah's treatment and needs, giving mom and son comfort and strength. Friends, both known and unknown, including those from Chinese community, have been praying for and encouraging them faithfully. They have offered them various assistances, helping them strengthen their faith and raise their hope.
The Final Recourse
Josiah's health continued to deteriorate. His body is attacking the cells he has, and is no longer able to produce new blood cells. Doctors finally ruled that his bone marrow transplant had failed. Josiah was back on the brink of life and death.
Doctors have considered two options. The first is to add more the bone marrow of the original doner, referred to as "boost". The success rate of this is about 50-50. The second is to find new donor with a higher degree of HLA match. This will be a very long process, and the chance to find one is very low. In addition, Josiah will have to go through the myeloablative procedure again. This carries a great risk considering his very fragile condition. His white cell counts are so low that any small virus can be deadly. Moreover if he develops graft-versus-host disease, he will never be able to leave the hospital.
Last week, the doctor also diagnosed Josiah with thrombotic microangiopathy (TMA). It is a rare complication among bone marrow transplant patients but unfortunately Josiah is the exception. There are little clots throughout his body that can cause high blood pressure and multiple organ failure. Fortunately, the doctor found it early and prescribed the medication in time to control the complication.
Test of Faith
Carrilynn and Josiah are watching The Lord of The Rings for the second time since his hospitalization. This dialog between Frodo and Gandalf hit Carrilynn hard:
Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.
Carrilynn wrote on her blog:“Frodo's feeling occurred to me several times over the past 6 months, and I'm sure it will several times more before this is over. But today, after a dismal week, the quote above has grabbed a hold of me and acted as a balm to my soul. So many times this year, as I have watched the seasons change outside of our window, I have wished this wasn't happening, that we weren't here, that this wasn't real. All the time knowing that we're not "special" - as unbearable as this has been, other families have dealt, and are dealing, with things like this or worse, and there is no reason that we would escape suffering in our lives.”
“Which brings me back to Gandalf. Everything in me wishes we could pass through this unharmed, unscathed, unchanged - but that is not for me to decide. Today I will attempt to choose to be encouraged, to realize that I cannot choose where we are today, but I can choose what I do with the time that we are given. I can remember that nothing passes through God's hand without Him being aware, that He is far greater than our circumstances, that He is holding us as we walk this often dark and lonely path. I choose to be encouraged by that thought.”
His doctor finally decided to perform the “boost” procedure at the end of this month and thankfully, the original donor also agreed to donate again, We are trusting this procedure into the hands of God and praying for the following:
TMA continues to respond to the treatments, and blood pressures continue to decrease. Cytomegalovirus levels continue to stay low, and the retinal lesions continue to shrink.
The Boost! In God's mercy this will be successful, and we can begin the process of moving back in a homeward direction. If it is not successful, please give us a chance for second transplant, which is our last recourse.
Help Josiah to deal with anxiety and depression. He would try harder to take in food and medicine, either by mouth or NJ tube, working towards getting some of his strength back. He must believe he will be able to leave the hospital.
For the rest of our family, continued health so they can visit, continued safety on the road, and that they will continue to feel loved by Mom, though she is not physically at home. Give the mother endurance and patience to help Josiah's fears, keep believing that this will come to an end, and we will be going home.
Our Response of Love
The Williams has carried a huge financial burden in order to treat Josiah. In addition to support them in spirit, we can also make donations to relieve their financial stress. We have set up an account for Josiah at Children's Hope International (CHI) to help them with expenses that the health insurance does not cover, such as care supplies, accommodation, transportation, and food. If you are inspired and moved, please consider donating online at the web page and make sure to designate your donation to Josiah by entering “Josiah” as the tribute name.
In addition, we would also like readers to send Josiah's get-well cards from all over the world, with words of inspiration and encouragement to help him endure the difficult journey ahead. He should know many Chinese folks do care for him. He is not alone in his fight but loved by many. You can write to him either in Chinese or English. Please send your card or letter to the following address:
Columbus Chinese Association
c/o Village of the Stars/Josiah
PO BOX 208
COLUMBUS, IN 47202-0208
USA
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