The Weeks Post Transplant #1

The dark days of transplant led to brighter days that once again proved how incredible this child is!

To all our wonderful friends and followers of Theofanis’ blog, we thank you for your continued support and prayers. We apologize for not having posted updates in several weeks, but be assured, Theofanis is doing great! His Super Cells are as incredible as Theo himself! Though, the ups and downs that we faced have led us to moments of complete emotional and physical exhaustion. Nearly seven months into this battle against cancer, we have learned to allow ourselves to seek rest and sleep. In other words, we crashed. –Eleni and Kosta

Post transplant: Day +1 through Day +7
They were difficult, dark, and frightening days. Kosta and Eleni felt helpless. Neutropenia set in and Theofanis spiked a fever. The doctors started the antibiotics, the antivirals, the antifungals, the anti-nauseas, the morphine, antiseptics, the colase, the lotions for his inflamed skin, the rinses for his blistering mouth, the stomach soothers for his shedding GI tract. The TPN (intravenous nutrition) was hung since he no longer could eat. The only thing that seemed to bring him comfort was “Mr. Thirsty” (coined by his dentist, Theio Pete) which he used to suction the saliva out of his mouth. His face swelled, his mouth was full of sores, his throat was flaming, his skin was rashed. His skin also itched from the morphine and his scratching didn’t stop until a new pain narcotic was prescribed. And when Kosta and Eleni watched Theo throw up an incredible amount of blood with the lining of his stomach, they could not imagine their son’s struggle being any worse.

And during this difficult time, he and his sisters missed each other desperately. They would video chat every day and read each other bedtime books each night via FaceTime. But it was hard for them. In a short video chat, the girls could sense and feel their brother’s battle.

Theo would say, “This is not fair. I want to go home. Having cancer is the worst thing.”

At home, Sophia would cry at night and say, “I miss Theofanis.”

Deme secretly wrote in the following answer to a question in a diary she had just bought at the school book fair: Q: Who is the one person in the world you would change places with? A: My brother. (Yes, mom peeked at her daughter’s diary, and she’s so glad that she did because she was reminded of how incredibly compassionate, caring and selfless her eight year old daughter is! And how much she loves her brother!)

Each day Kosta and Eleni prayed that the current day would end and the next day would come quickly.

Post transplant: Day +8
Theofanis’ fever finally broke, and all the bacteria cultures continued to come back negative. His counts were still basically at zero, though. But there was a glimmer of light when the previous week’s redundant WBC results of <0.1 turned into 0.2!

Post transplant: Day +9
0.9! Theo’s white blood count was 0.9! And his absolute neutrophil count was 740! This was the definite sign that his stem cells engrafted! His beautiful, wonderful, powerful stem cells have “taken over”! And it showed. His doctors and nurses kept commenting that Theo looks great! Still filled with uncertainty, Eleni and Kosta kept seeking affirmation, “Really? Are you sure?” But then, late that night, Theo had a secret visit from a very special lady, Rene Pournaras, aka Yano’s mom. Rene has also lived this neuroblastoma nightmare and has continuously provided the Yianas family support, strength, advice and hope. Rene, who saw her son go through his own stem cell transplant, turned to Eleni and said, “He looks good.” Those three words from Rene finally re-assured Eleni. And when Rene blew up a latex glove to the size of a beach ball and tossed it to Theofanis, Eleni smiled at the sight of her son returning the toss with a huge grin on his face.

Post transplant: Day +10 through Day +14
The morning of Day +10, the door to Theofanis’ hospital room flung wide open and Dr. Cunningham appeared in the doorway with a HUGE smile on his face and announced, “Look, I have both doors open!” When the team of residents shuffled into Theofanis’ room, Eleni saw that the first door leading to the “outside world” was left open and Theofanis was exposed to regular non-hepa filtered air for the first time since his admission. Dr. Cunningham delivered the good news that his counts had recovered! His WBC was 2.2 and his ANC was 1100! Dr. Cunningham also suggested that Theofanis get moving. With a “94” respiratory mask, Theofanis took a stroll around the 6th floor of Comer! Smiles and waves came from all the nurses and staff who saw Theo out of bed for the first time in weeks!

So, the buzz of an early discharge rang in everyone’s ears! Theo’s mucositis was improving, his temperature was normal, his GI tract was stable, and as long as his counts continued to skyrocket, there was a good possibility that Theofanis could go home the next week, a full week earlier than expected. This was fantastic news!

Preparations for Theo’s discharge began both at Comer and at home. The doctors started to wean Theo off the pain meds. The IV meds were changed to oral meds. The home nurse was contacted. He had a few blood transfusions along the way, but nothing out of the ordinary. The cleaning crew was dispatched to the Yianas home. Every inch of their home was cleaned and sanitized. Every carpet fiber, every wall, all the ducts were cleaned. All the live plants were removed. UV air purifiers were installed, too. Admittedly, Eleni and Kosta felt a sense of nervousness about going home. They had to have everything perfect, everything clean, everything done to prevent their son’s delicate immune system from being exposed to anything that could compromise his recovery. “Are we going home too soon? The other transplant kids are still in the hospital.”

“Of COURSE he's being discharged early...he's Theo! Super Theo!” When Carrie Stotz, whose son Aidan has been victorious against this neuroblastoma beast, sent this to Eleni in an email, a feeling of re-assurance settled in. When the doctors would say, “He’s doing great…We’re thrilled with how he’s doing…He looks fantastic…” Eleni and Kosta would respond to them seeking affirmation, “Really…Are you sure?…What should we watch out for?....” But when Carrie reminded Eleni of how “SUPER”, their son is, it was a much needed reminder that Theo can do anything! And when he does something (consciously or subconsciously) he does it to the best of his ability, and he does it to win!

So the reality of a discharge date led to excitement for everyone. Eleni and Kosta started to pack up and take home the items that adorned Theo’s hospital room. From completed lego sets, toys, and books to all the cards and posters that covered his walls to the food in their make-shift pantry, slowly, Theo was moving out! And when Carly and John Saltis, whose son Stahi has just finished his treatment to knock out this neuroblastoma beast, dropped of a home-cooked meal for Kosta, timing could not have been better as the existing food supply dwindled.

Post transplant: Day +14 through Day +18
Theo was disconnected from his IV pole and discharged 14 days after his Stem Cell Transplant (aka Stem Cell Rescue). He was discharged on November 9th, the Fest Day of Saint Nectarios. Saint Nectarios is the saint and healer of cancer, and the Yianas’ have been praying to him to bestow a miracle upon their son for his cure. And on this day, an extra special thank you went out to Saint Nectarios for helping in Theo’s recovery to be discharged a whole week earlier than initially expected.

Theofanis was released to Ronald McDonald House. The transplant team insisted that Theo spend his first few days “out” at a location close to the hospital. According to the doctors, most problems arise within 24 hours of discharge. And because Palatine is well over 30 miles away from the University of Chicago hospitals, the transplant team made arrangements to get Theo situated at RMH. About two blocks away from Comer, Ronald McDonald House would be Theo’s temporary home. For the first few days, Kosta stayed with Theo. He had to learn the nerve-racking task of preparing and administering Theo’s TPN (IV nutrition). They mostly stayed in the room, so Kosta also had the task of preventing boredom from settling in. A clinic visit on Friday showed that Theo continued to recover nicely, but their hopes of being allowed to go home burst when the transplant team insisted Theo stay at RMH through the weekend. But all was not so bad…Theo was told that his sisters could stay with him at RMH! So, on Friday night, Eleni packed up the girls and headed to Hyde Park for the family’s much anticipated reunion.

It was a fantastic reunion filled with smiles and hugs! A few tears of joy were shed, too, as you can imagine.

Ronald McDonald House is like a hotel, but with a communal kitchen. The rooms are simple with beds and a bathroom. No TV, though, which was tough. Theofanis’ room was on the third floor and near the “lounge” which had a TV. But, he could only be there if others weren’t. The workers and volunteers were nice. There were families there from all walks of life and cultures. Groups would come in at each meal to prepare food for the patient families. Because Theo is on very strict dietary restrictions, the Yianas’ had to cook their own meals. Theo wore his mask when he left the room. And even in the room, Kosta and Eleni would only allow Theo to use linens and blankets they brought from home. It was fairly clean (you had to clean the room yourself) but in no way was it nearly as clean as the Yianas home.

Post transplant: Day +19 through today
When the weekend finally came to an end, Theo returned to the Hospital Clinic for labs and check-up. He got another “thumbs up” and Dr. Cunningham gave him the official OK to go HOME! Good thing because Kosta and Eleni already had packed up the car and checked out of RMH. (They were going home no matter what!) They also got the ok to start cutting back on Theo’s TPN because over the weekend, Theo started eating…real food!

So, on Day +19, Theo and his family finally went home! And since that day, Theo’s been happy! His sisters have been happy! And, his parents are happy that Theo is recovering well. And everyone is thrilled beyond words that their family is together!

So, what’s been going on since he’s been home? He’s been feeling fantastic! TPN was cut completely within the week, his Clinic Visits were cut from 2 to 1 a week, and he’s totally off the pepcid and anti-nausea meds. Theo is technically in isolation, so he has very little interaction with others. He was able to begin meeting with his home tutor, though. And, he actually is enjoying his “school time” at home. Kosta and Eleni are making every effort to keep Deme and Sophia as healthy as possible. But, there were a couple of scares last week when Deme had a sore throat and stuffy nose and Sophia threw up one night. Panic set in for Kosta and Eleni and extra precautions were in effect. Even Kosta and Eleni were feeling run down and not 100%. But, Theo managed to ward off any germs. (Remember, those super cells really are super!)

The Yianas’ also spent a very quiet and relaxing Thanksgiving at home. Their cooking restrictions made preparing dinner a bit more challenging this year, but at the end, everyone enjoyed their Thanksgiving meal. (Well, except for the canned ham. It was simply terrible!) But, the best part of the holiday was that they were all together. The Yianas Family has a lot to be thankful for! Family, friends (new and old), their doctors, their church, and the prayers coming in from all over the world, are just a few of the blessings that they are immensely thankful for. And as Thanksgiving came to an end, the Yianas family tradition of Christmas preparations began. Every year on the day after Thanksgiving, the whole family decorates for the holidays. They decorate their tree. (This year, though a real tree is against transplant rules.) They set up the holiday lights, they hang the stockings and all the garland. Admittedly, Kosta and Eleni talked about keeping Christmas “low key” this year, but they reverted back to keeping tradition and keeping things as normal as possible. So, the house is ready for the holidays and the letters to Santa are written and mailed. And although the kids realize that there’s a very good chance that they will not be together on Christmas, they are focusing on the moments now and immensely enjoying the time they are spending together.

What this Stem Cell Transplant has taught us about Theofanis
Everyone who has ever met Theofanis knows that he is a very respectful child. And, if you remember, one of the first things that you read about him on this blog is that he likes to win. And at no time more apparent than during this transplant, these two qualities that are innate in him became obvious to his parents. The best way to describe Theofanis is that he is respectfully competitive. And that’s exactly how he’s been fighting this Neuroblastoma beast. Neuroblastoma is his competitor. He is fighting it with determination, grace and tolerance. The strength of his mind, the strength of his body, the encouraging cheers from his supporters and teammates, powered by prayer, are the tools he uses to compete against it. And when he finally defeats this cancer, he will instinctively raise his arms in victory, most likely not say a word, shake it’s hand for a final “goodbye”, and he will move on.

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

Theofanis will be admitted to the hospital on Tuesday, December 6th to begin his second stem cell transplant. December 6th is the feast day of Saint Nicholas. Please pray to this great saint to protect him once again as he goes through another round of high dose chemotherapy, another stem cell rescue, and weeks of recovery. Please pray that his body fights hard, that he wards off side-effects, and his super cells come back quickly. Please pray that his physical and emotional pain is minimal. And please pray that through a miracle, Theofanis may somehow be allowed to see his sisters on Christmas Day, which is also his 7th birthday.