The Weeks Post Transplant #2

The mistake happened, the recovery was wrenching and worrisome, and the Holidays were emotional.   Looking back, it’s hard to comprehend how we got through it.  But looking forward, Hope continues.

On Day +1, the symptoms and side-effects from the high dose chemotherapy he received the previous week surfaced. Theofanis’ counts dropped to zero, the mouth sores appeared, and Theofanis was feeling miserable. For the first time in six months, Theofanis’ eyelashes started growing back and an even fuzz surfaced on his scalp, a sign that his stem cells from his first transplant were working hard. But  Eleni and Kosta knew that this phenomenon was temporary and all this new hair would disappear once again.  Over the course of the next week, Theofanis experienced a very difficult time. He began to have an irregular heartbeat which the doctors determined was caused by the antifungal medicine he had been on since the first transplant. The remedy was simple…stop the antifungal. The mucositis this time around was far, far worse than what he experienced before. There were more and bigger mouth sores that continued down his throat.  There were signs that the mucositis inflamed his entire digestive tract. He had blood in his urine which was caused by the inflamation in his bladder and urethra. Concerns over bacterial infections surfaced so he was pumped with more prophylactic medicines. But every culture came back negative, so finally an ultrasound of his bladder confirmed it was mucositis. The pain medicine he was on, a form of morphine called dilaudid, caused severe itching. His skin began to slough off, too. The only true remedy to his misery would be his stem cells engrafting.

Theofanis couldn’t eat of course, he didn’t feel like playing Wii, he didn’t want to read, and he didn’t want to do anything. Another thing he didn’t do was complain. “The first transplant was easier than I thought it would be, and the second transplant is a lot harder than I thought it would be,” Theofanis told him mom and dad. Of course there were tears, mostly due to his pain. But, he once again showed incredible resolve.

Then, exactly one week to the day of his stem cell rescue, his white counts unexpectedly appeared at 0.1. “It’s still really at zero,” they would say. “Let’s see what happens tomorrow.” Then on Day +8, his counts jumped to 0.3. They were going up! They were definitely going up! No one expected this. It was a reason to celebrate in addition to the events that followed that morning:

THE CROSS OF CHRIST’S CRUCIFIXION

A week or so prior, Theofanis’ godmother, Evy, had heard that a priest from Greece is travelling the US with a piece of Christ’s cross which has been known to heal the sick. And this piece of the cross was nearby at the monastery in Wisconsin where streams of visitors poured into the monastery on a daily basis to be blessed by it. Evy contacted the monastery and told the gerontisa (head nun) about Theofanis. Within days, the Yianases received a call from the monastery with news that the priest would bring the cross to Theofanis and bless him in the hospital. So, the morning of day +8, the gerontisa and Father Ioannis from Crete brought the holy cross to Comer. And their beloved Father Andrew came as well. Breaking all the rules, Eleni and Kosta told the staff that Theofanis was having visitors. And with a WBC of 0.3, they were not allowing anyone to argue with them.  This was a special visit, and the doctors and nurses knew it, too.

There was also another special thing occurring that morning. A special bond has been developing between the Yianases and two other Greek families--a bond created by a beast called neuroblastoma. Three young Greek boys in the Chicago area are fighting this cancer. These three boys were each diagnosed in the month of May, in three consecutive years: Yano was diagnosed May of 2009, Stathi was diagnosed in May of 2010, and Theofanis was diagnosed in May of 2011. Yano is done with treatment and is in remission. . Stathi just completed treatment, but with a few nasty spots that are presenting themselves on scans, is considered to have stable disease. And, of course, Theofanis is in active battle. Rene (Yano’s mom) and Carly (Stathi’s mom) have been an inspiring source of information, support and therapy for Eleni. So Eleni told them that Father Ioannis was coming to Comer to bless Theofanis, and the three moms agreed that it would be wonderful to have all three boys blessed under the same roof.

Father Andrew arrived first and visited with Theo and Kosta while Eleni was awaiting the arrival of the others.  Father Ioannis and the head nun arrived with the cross and headed to the hospital chapel to bless Yano and Stathi.  They then made their way to Theo's room where Theofanis welcomed them with a smile. Father Ioannis took a medium-sized silver cross out of a wooden box. (The piece of Christ’s cross was embedded in the silver cross.) Father Ioannis placed the cross over Theofanis and moved it across Theo's body, from head to abdomen, to limbs.  He then pulled a piece of the cotton from the case that protected the cross, gave it to Theofanis, and told him to keep it.  He also put his hand on Theofanis’ head, leaned in to him and told him that he’s going to be fine, and he expects him to come to Crete to visit him and buy him a cup of coffee when he’s a little older. Theofanis smiled again.  And as Eleni and Kosta thanked Father Ioannis and gerontisa for coming, they told them that Father Ioannis himself lost his two-year old son to cancer. It was then that he came into possession of the cross and decided to take it to those who were sick and needed healing. Father Ioannis looked at Kosta and Eleni and told them that he understands exactly what they are going through. Then, he comforted them by telling them that Theofanis will be fine! Everything is going to be ok! So the comfort that these people brought to Theofanis and his family and the hope that Christ’s cross will deliver the miracle they have been seeking was truly a precious gift and blessing!

The next day, early in the morning after Theo’s labs were drawn, the Resident came in to wake up Eleni and show her the results of Theo’s blood test. With a big smile on her face, she handed the report to Eleni which showed that Theo’s WBC was 1.6 and his Absolute Neutrophils appeared at 1,216! She told her that it was incredible that his counts were so high. She said all the doctors are shocked and extremely happy. Then the resident said, “I heard you had a big ceremony here yesterday,” inferring that the hospital staff was thinking divine intervention may have contributed to the incredible news that Theo’s new stem cells have taken over, faster and stronger than anyone ever expected. And actually, his stem cells engrafted faster than during his first transplant even!  Mid morning, Dr. Cohn came in with an entourage of residents, gave Theo a huge smile and said, “Your mom is right, you really do have super cells!”

So the next few days, Eleni and Kosta watched his counts skyrocket each day and saw his mucositis ease a bit.  But, they also watched Theofanis catch a cold. Well, he really didn’t catch a cold, but the cold symptoms surfaced. Remember, tests showed that Theofanis had the rhinovirus colonies in his sinuses, that had the potential of turning into a cold. Well, now that his stem cells came back and his immunity was restarted, his new cells discovered the nasty rhinovirus and decided to start fighting it. So, the sneezing, runny nose and fever began. Although he was on a clear path to recovery,  the hope that he would be released in time for Christmas fizzled.  

HAPPY BIRTHDAY JESUS AND HAPPY BIRTHDAY THEOFANIS!

After coming to grips with the fact that Theo would not be allowed out of the hospital, the Yianas family had to plan a Christmas and Birthday celebration unlike any other year. Kosta and Eleni were determined to make sure this Christmas was just as magical and just as happy, just in a different place.  And the way that they were going to do it was to make sure their family was together.  Fortunately, Dr. Cohn was the attending physician that week on the 6th Floor of Comer, so she gave the ok to have Theo’s sisters visit him that day. And with that approval, Eleni and Kosta broke all the rules! 

On Christmas morning, Santa delivered the Yianas family’s gifts to both Palatine and Comer Children’s Hospital. Two sets of stockings were filled with goodies, two Christmas trees were surrounded by presents, and two iPads were working hard as Kosta and Theofanis were Facetiming from Chicago and Eleni, Demetra and Sophia were Facetiming from Palatine. The family opened Christmas presents together via video. Each sibling would take their turn opening presents while the others waited anxiously to see what Santa brought them. All three kids knew that they were very, very good this past year, so they hoped that Santa would bring them everything they wanted!  It took nearly two hours to open all the gifts, which was an indication that yes, the Yianas kids were very, very good kids!

So Eleni packed up the Honeybaked ham, gathered the party supplies and balloons and with a birthday cake in hand, headed to the hospital to celebrate Christmas and Theofanis’ 7^th birthday! When they arrived at the hospital, with the help of the Tunney family, they set up a mini birthday party in the lobby of the 6^th floor of Comer. (As mentioned, the Yianases decided to break a lot of rules that day!)

Wearing a mask, Theofanis emerged from his room for the first time in over three weeks! He saw familiar, loving faces, heard them sing “Happy Birthday” to him, and even joined them in a board game. After blowing out the candles on his cake through his mask (he had to lift one side of it to get any air out), Theofanis showed off his overly-decorated hospital room (again, breaking more rules) where everyone was shocked to see the piles and piles of toys and gifts from Comer’s Child Life department and from his nurses. Plus, there were gifts from his teachers, family and friends! So to the many generous people who sent cards and gifts and texts and wishes filled with love, you helped turn a worrisome Christmas Day into a special day that was filled with smiles and laughter. 

OUR PROMISE TO FIND A CURE

As everyone recalls, the wonderful parish of St. Demetrios in Elmhurst held the Taste of Greece Fall Glendi in Theofanis' honor in late September, with the proceeds to benefit Theo and neuroblastoma research.  The church left it up to the Yianas family to decide which research program to donate to. The Yianases chose to donate to the University of Chicago neuroblastoma research program lead by Dr. Cohn. And, they chose a program specific to a new therapy that not only has proven to help children who have relapsed, but also has the potential in the future to help newly diagnosed patients who are undgeroing front-line therapy. Dr. Cohn is leading the development of an MIBG therapy room which delivers radioactive isotopes to neuroblastoma cells to kill only those cells. It is a therapy that requires children to be isolated in a lead-lined room for an entire week while radiation is continuously being delivered.   The MIBG program at the University in Chicago would be the only one in Illinois and Indiana, and one of the very few in the United States that could offer this treatment to their patients. Plus, invaluable research on MIBG therapies have the potential to lead to better and more effective treatments with less toxicity. As Theofanis’ pediatrician and aunt has said, “what if they could attach chemotherapy drugs to MIBG isotopes and deliver chemo to only the neuroblastoma cells and spare healthy cells?” It’s a brilliant idea. Those are the kinds of ideas that spur research that will one day find the desperately needed cure.

So, Theofanis asked Dr. Cohn to come to his room at 637 Comer on the day he was being discharged to home.  Dr. Cohn arrived and was surprised to see a beaming Theofanis, check in hand, announce that he wanted to donate to help children with Neuroblastoma.  She was very happy and thankful for the donation and the Yianas’ support of the MIBG therapy program which is opening in 2012.  So to everyone who attended the Glendi, donated to the Glendi, and who volunteered their time, especially those who spent endless hours planning and organizing, the Yianas family thanks you, Dr. Cohn and the researchers at the University of Chicago thank you, and Theofanis thanks you. And you all should feel proud that your efforts will help many children in the future fight this terrible disease.

DISCHARGE, DEFIANCE AND HOME

On December 30^th, when discharge day finally arrived, Kosta packed everything up, all the cards, the posters, the decorations and the Christmas tree,  and waited for Eleni to pick them up.  Dr. Cunningham had asked the Yianas family to head to the Ronald McDonald House as they did last time, but Kosta and Eleni felt that it was better to be home over the New Years holiday.  Theo would be more comfortable there and he would have less exposure to other people.  Knowing what it was like the first time around, they insisted their home was cleaner, Theo would try to begin eating, and he would be happier sleeping in his own bed and playing freely with his sisters. The doctors, now used to dealing with Kosta and Eleni’s defiance to the rules, highly recommended that they stay close to the hospital during the first few days after discharge. “We’ll drive fast if we have to come to the ER,” they told them, and they signed the discharge documents, thanked all the nurses, waved goodbye and headed home!

GETTING STRONGER EVERY DAY

He’s feeling good. He’s comfortable. He’s laughing. He’s shooting baskets. He’s jumped in the snow. He’s playing with his sisters and arguing with them too. Theo's task now is to slowly get back into his "normal" routine of eating more, tackling homework, studying with his tutor, and exercising to get his strength back.  He was off of his liquid nutrition, TPN, about a week after discharge.  He was experiencing some issues with his gastrointestinal system during his last week in the hospital, and an astute nurse pointed out to the doctors that he was going through morphine withdrawal. So, he was weaned off the narcotic while at home. His regular visits to the clinic (two per week) for a checkup and labs showed his recovery was going well and his blood counts look good. So Dr. Cunningham reduced his visits to once a week and now to every two weeks. The smiles from the doctors during Theo’s visits to the hospital also confirm Theofanis is recovering extremely well!

So, Theofanis has finally passed the half-way point of his treatment. Chemo Induction Therapy is done. Tumor resection is done. Stem Cell Transplants are done. Now, the next step is Radiation Therapy. And Eleni and Kosta need to decide what’s the safest path for their son.