Noah Spino - Kerrville Youth Needs Our Help!
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A letter written by Noah’s mother, Angela Spino on May 3rd, 2019.
In July 2018, our lives changed. We picked our children, Abigail and Noah, up from Catholic Heart Work Camp in Memphis. At the work camp, Noah had volunteered cleaning yards and painting homes for indigent elderly homeowners. It was a Friday afternoon. We were headed on to Pennsylvania to visit family. We noticed Noah didn’t look well, and he complained of a headache, but we thought he was exhausted from his week. By Sunday evening he said he was dizzy and still had a headache, so we decided to take him to the local hospital. He was taken back immediately and within an hour we were told he was in need of a blood transfusion and he would be airlifted to Children’s Hospital in Pittsburgh. After several days in ICU and three blood transfusions he was moved to a regular room, where we spent the rest of the week. He was treated for pneumonia and diagnosed with Autoimmune Hemolytic Anemia.
Upon arriving home, he began seeing a Hematologist in San Antonio. He had weekly blood draws, then bi-weekly, as he slowly weaned off steroids. He was doing well and his hemoglobin level was staying steady. Then, in October, he came down with pneumonia. When he did not improve with treatment, he had a CT scan, which showed nodules on his lungs. He was hospitalized for 9 days and had many tests run; lung biopsy, bronchoscopy and blood work for everything! He was diagnosed with Common Variable Immune Deficiency (CVID), which is a rare primary immune deficiency. Weeks later, the results from the biopsy and bronchoscopy came back. We learned that he likely has an even rarer lung disease, Granulomatous-Lymphocytic Interstitial Lung Disease (GLILD) and had mushroom fungi growing in his lungs. Furthermore an additional surgery would be needed to confirm the GLILD diagnosis.
We have opted to treat him for the CVID at home, subcutaneous, rather than in a clinic. A nurse came and taught us how to give him the infusions and we are slowly adjusting to the 2-hour weekly treatment. He has become more “comfortable” while receiving the infusion. He walks around with the pump and plays video games. He also began helping with the process. He knows how to fill the syringes and start the pump, and the other night he removed the needles himself. This is a big step for him. Eventually he will need to be able to administer it to himself. Since the frequency of this treatment might change but will remain lifelong.
On April 16th, he had lung surgery to remove a nodule that had significantly grown since October and to confirm the GLILD diagnosis. This was by far the hardest surgery for not only Noah but for us. There were a tons of variables we had to prepare for, the worst being complete removal of his lower left lobe. Fortunately, the doctors were able to do a wedge resection to completely remove the nodule. The days following the surgery were really hard. Noah was in so much pain from the large chest tube that was in his side. He stayed pretty medicated, but would cry and moan in pain. As a parent, not being able to comfort your child was the worst feeling ever. Once the chest tube was removed, he started to feel better and is now on the road to recovery. He went back to school a few weeks ago, and seems to be doing well. I think he enjoys having friends carry his back pack for him!
We recently received the results of the surgical biopsy and now have a definitive diagnosis. Noah’s GLILD was confirmed. It is aggressive and will likely require chemotherapy. This is a very serious condition. This news has us devastated and brokenhearted. We are attempting to stay positive, count our blessings, and fight this illness with all resources available. We are determined to find the best treatment options possible which might require travel to major medical centers outside of Texas.
In the meantime, Noah looks great! He played baseball, he went to formal and he is able to go to school. Sometimes, for a brief moment, it is easy to forget just how sick he really is.
Emotionally and financially we are completely exhausted. Being able to process the diagnosis and juggle 5 specialists while trying to keep a “normal” family life is hard enough. Add in the financial burden and there is even more emotional turmoil. Sixty dollar co-pays, $323 fungal medicine, gas to San Antonio and back, parking fees, etc. It adds up very quickly and some months are far worse than others. This financial necessity causes other bills to fall behind. Which then causes late fees and penalties. It is a vicious cycle. Also we have begun making payment arrangements for all the medical bills that insurance didn’t cover and our out of pocket expenses. Currently, these bills add up to over $23, 000. Noah is only 16. So, we have at least another calendar year of private insurance before he qualifies for Medicaid. Which means another $10,000 of medical expenses (deductible and out of pocket limits).
We don’t know what tomorrow will bring, but we try to focus on today and trust in God to provide for tomorrow.
Noah’s current diagnosis:
Autoimmune Hemolytic Anemia
Common Variable Immune Deficiency
Granulomatous-Lymphocytic Interstitial Lung Disease
In July 2018, our lives changed. We picked our children, Abigail and Noah, up from Catholic Heart Work Camp in Memphis. At the work camp, Noah had volunteered cleaning yards and painting homes for indigent elderly homeowners. It was a Friday afternoon. We were headed on to Pennsylvania to visit family. We noticed Noah didn’t look well, and he complained of a headache, but we thought he was exhausted from his week. By Sunday evening he said he was dizzy and still had a headache, so we decided to take him to the local hospital. He was taken back immediately and within an hour we were told he was in need of a blood transfusion and he would be airlifted to Children’s Hospital in Pittsburgh. After several days in ICU and three blood transfusions he was moved to a regular room, where we spent the rest of the week. He was treated for pneumonia and diagnosed with Autoimmune Hemolytic Anemia.
Upon arriving home, he began seeing a Hematologist in San Antonio. He had weekly blood draws, then bi-weekly, as he slowly weaned off steroids. He was doing well and his hemoglobin level was staying steady. Then, in October, he came down with pneumonia. When he did not improve with treatment, he had a CT scan, which showed nodules on his lungs. He was hospitalized for 9 days and had many tests run; lung biopsy, bronchoscopy and blood work for everything! He was diagnosed with Common Variable Immune Deficiency (CVID), which is a rare primary immune deficiency. Weeks later, the results from the biopsy and bronchoscopy came back. We learned that he likely has an even rarer lung disease, Granulomatous-Lymphocytic Interstitial Lung Disease (GLILD) and had mushroom fungi growing in his lungs. Furthermore an additional surgery would be needed to confirm the GLILD diagnosis.
We have opted to treat him for the CVID at home, subcutaneous, rather than in a clinic. A nurse came and taught us how to give him the infusions and we are slowly adjusting to the 2-hour weekly treatment. He has become more “comfortable” while receiving the infusion. He walks around with the pump and plays video games. He also began helping with the process. He knows how to fill the syringes and start the pump, and the other night he removed the needles himself. This is a big step for him. Eventually he will need to be able to administer it to himself. Since the frequency of this treatment might change but will remain lifelong.
On April 16th, he had lung surgery to remove a nodule that had significantly grown since October and to confirm the GLILD diagnosis. This was by far the hardest surgery for not only Noah but for us. There were a tons of variables we had to prepare for, the worst being complete removal of his lower left lobe. Fortunately, the doctors were able to do a wedge resection to completely remove the nodule. The days following the surgery were really hard. Noah was in so much pain from the large chest tube that was in his side. He stayed pretty medicated, but would cry and moan in pain. As a parent, not being able to comfort your child was the worst feeling ever. Once the chest tube was removed, he started to feel better and is now on the road to recovery. He went back to school a few weeks ago, and seems to be doing well. I think he enjoys having friends carry his back pack for him!
We recently received the results of the surgical biopsy and now have a definitive diagnosis. Noah’s GLILD was confirmed. It is aggressive and will likely require chemotherapy. This is a very serious condition. This news has us devastated and brokenhearted. We are attempting to stay positive, count our blessings, and fight this illness with all resources available. We are determined to find the best treatment options possible which might require travel to major medical centers outside of Texas.
In the meantime, Noah looks great! He played baseball, he went to formal and he is able to go to school. Sometimes, for a brief moment, it is easy to forget just how sick he really is.
Emotionally and financially we are completely exhausted. Being able to process the diagnosis and juggle 5 specialists while trying to keep a “normal” family life is hard enough. Add in the financial burden and there is even more emotional turmoil. Sixty dollar co-pays, $323 fungal medicine, gas to San Antonio and back, parking fees, etc. It adds up very quickly and some months are far worse than others. This financial necessity causes other bills to fall behind. Which then causes late fees and penalties. It is a vicious cycle. Also we have begun making payment arrangements for all the medical bills that insurance didn’t cover and our out of pocket expenses. Currently, these bills add up to over $23, 000. Noah is only 16. So, we have at least another calendar year of private insurance before he qualifies for Medicaid. Which means another $10,000 of medical expenses (deductible and out of pocket limits).
We don’t know what tomorrow will bring, but we try to focus on today and trust in God to provide for tomorrow.
Noah’s current diagnosis:
Autoimmune Hemolytic Anemia
Common Variable Immune Deficiency
Granulomatous-Lymphocytic Interstitial Lung Disease
Fundraising team (2)
Wyatt Wentrcek
Organizer
Kerrville, TX
Angela Spino
Beneficiary
Autumn Domingue
Team member
