As of February, 2011, Issy is eighteen months out of treatment and twenty-six months post-diagnosis. All MRIs post-surgery have shown NED. We are blessed.
Current side effects include chronic lung disease and a trach (due to vocal cord paralysis). He has delayed speech acquisition and is 100% g-tube-fed.
For other ATRT families--Issy followed the ACNS-0333 protocol, which we highly recommend, as well as Children's Hospital-Wisconsin.
Feel free to contact us or www.cbtrf.org to connect with other ATRT families.
Our little Issy was a thriving, chunky, crawling machine through his tenth month, even though he was never a big fan of solid foods (he would kinda gum it and then push it back out). His throwing up really started at that time--he'd randomly throw up breastmilk, yogurt, baby food, or just stomach bile. We notified our pediatrician to schedule an additional check-up. Instead of gaining weight that month, he held at 19.4 pounds.
His tenth month was very difficult. We increased feedings to every four hours, which resulted in increased throw-ups. We began the Early Intervention process for food aversion and waited. And we began to question ourselves and one another. At his eleventh month appointment, Issy lost weight (18.10 pounds) and we felt clueless.
One week later, Issy began walking, and we were hopeful that the now every-two-hour feedings were working. One week after that, Is became extremely lethargic and we had our first hospital/ER visit. He was dehydrated and had lost weight yet again (18.3). Issy's pediatrician recommended I take the remainder of the week off to nurse round the clock while we waited for his GI appointment the following Monday (November 10th). That was the day he was admitted to Comer Children's Hospital for Failure to Thrive. Over the weekend, his weight has dropped yet again to 17.10 pounds.
During the first week at Comer's, Issy's blood and urine were tested, he had an upper GI X-Ray and scope, and received a soft palette and kidney ultrasound. As everything came back negative, the doctors agreed he had an oral motor aversion. The second week was full of visits from speech/occupational/physical therapists. And the third week consisted of an NG-tube, formula feedings, and lots and lots of throwing up.
We voiced our concerns and questions and felt we were told by the specialists that the diagnosis was "overreliance on nursing and family conflict." We went from questioning ourselves to blaming ourselves and one another.
Issy was discharged on Saturday, December 6th, and we saw small glimmers of his old self--giggles, some crawling, smiles. However, the week also consisted of more throwing up. His GI appointment was frustrating ("We're not that concerned about his throwing up, as long as he is gaining weight") and we focused on a possible "milk protein intolerance". Thank god I left for Wisconsin that weekend.
Over the weekend (the 12th and 13rd), Issy looked as lethargic as he had the month earlier. We were now going on five weeks, and he was still throwing up, even though the NG-tube was depositing the formula right into his stomach. Homero and I agreed to get a second opinion. On Monday, as I began driving out of the area, Issy's pediatrician, Dr. Glunz, connected with me and directed me to take him to an Appleton ER.
The ER, after several hours, sent us to the Children's Hospital wing at Neenah's Theda Clark Hospital. That night, Dr. Schmitt listened, really listened, to Issy's story and recommended Children's Hospital of Wisconsin Milwaukee.
Tuesday the 16th Issy was transferred and admitted to Children's in Milwaukee. Wednesday the 17th consisted of an abdominal ultrasound, an EEG, and an MRI. That evening we were told Issy had a brain tumor. Thursday we saw the images for ourselves, and they began Decadron to decrease the inflammation/swelling for surgery. Friday, Saturday, Sunday consisted of more waiting, praying, cuddling, crying, and lots of support from family and friends.
Issy is currently in surgery (Monday the 22nd). We are getting updates every two hours and are hoping and praying that they can remove as much of the tumor as possible, that it is not growing from or connected to the brain stem, although that appears most likely, and that trauma to the brain stem is minimal. Chemotherapy is almost a given and radiation is a possibility. We will know the type and aggresiveness of the tumor early next week. The "window" of healing is long--he will be monitored a minimum of ten years to check for reoccurence or growth of the cancer.
We want you to know that every single message, text, call, email, visit, thought, and prayer is felt and appreciated. We have no words to express our gratitude for your love. We humbly ask for your continued support. Your presence in our lives is holding us up.
Please check the journal for current updates. And thank you so very much.
News came back on December 29th, 2008, that Israel's tumor was a Atypical Teratoid Rhaboid Tumor (ATRT). It breaks our hearts. Our journey begins.