Journal entry by Pamela Wilson —
Mid-April Ava woke up in the middle of the night with some pain in her groin area as well as a small lump/knot. Mom and Dad suspected that she had an Inguinal Hernia after looking it over. Lots of things crossed our mind, but we thought it may have possibly stemmed from a long scooter ride her and Charlotte took earlier that day. Two days passed and the lump didn't go away or get any smaller, in addition her pain gradually started to increase, but was still manageable with Ibuprofen. Mom messaged the pediatrician and because of the complications in doctor's offices and hospitals due to COVID...the pediatrician and Mom went through a list of other symptoms (fever, rash, hives, other lumps, etc.). She had none of the above mentioned symptoms so her pediatrician agreed that it could be a hernia, and for peace of mind an office visit was scheduled the next day.
During the office visit, it was determined by physical examination that the lump was not actually a hernia, but an enlarged lymph node. We were immediately sent to get an ultrasound of the pelvis and we were to have some labs done. The pelvis and abdomen ultrasound showed that it was in fact an enlarged lymph node and that her spleen was also enlarged. However, her bloodwork was in the 'normal' range. She still was not having any other symptoms so the diagnosis was a mystery (for lack of better words). She was then tested for a number of things...at this time Mono was actually the biggest suspicion. That result came back and it was negative. It was concluded at that time that it was possibly something viral, with the possibility of it becoming bacterial. She was being monitored and do bloodwork for 2 weeks time. All labs continued to show results in the 'normal' range.
As two weeks progressed, her pain was worsening, as was her condition. She was becoming more tired and just overall not feeling well. Mom was in close contact with her pediatrician daily via text at this point. Her condition worsened on Tuesday, April 21; more pain, fever coming and going, more tired but sleeping became impossible because of the pain. By middle of the night Wednesday...she was barely able to walk, she was sobbing in pain, and her overall condition was very scary. Mom and Dad rushed her to the nearest emergency room at the advice of her pediatrician. She had a CT scan and more bloodwork. The bloodwork was still in the 'normal' range, however the CT scan showed that she had multiple enlarged lymph nodes in her abdomen, enlarged spleen, and lesions/spots on her kidney. The ER doctor, not wanting to be pessimistic, advised us that it may be Lymphoma. We were accepted and taken immediately by ambulance to Hope Children's Hospital.
Over the course of a day and a half, lots of testing, doctors, specialists, etc...it was revealed that Ava has B-Cell Acute Lymphoblastic Leukemia (B-Cell ALL). It is cancer of the white blood cells that occurs in the bone marrow. There is no way we could have known any earlier...her oncologist stated she has no Leukemia in her blood at this time, so bloodwork would have never flagged her pediatrician to seek advanced treatment sooner. It was the bone marrow sample and the biopsy of the (original) enlarged lymph node that was sent to University of Chicago/Comer Children's Hospital that pinpointed her condition. We caught it early, very early. This key piece was so very important. It is what will give Ava the chance of survival and the chance to actually to be cured, not just in remission.
Everything is moving very rapidly, Chemotherapy is starting today Monday, April 27, 2020. She will receive injections directly into the spine twice weekly for Phase 1 (there are 4 expected phases of treatment).
This will be a long road for treatment...it is expected to last approximately 2 1/2 years. It will be aggressive in the beginning; therefore she will not be allowed in large groups, she will not be able to attend parties, she will not be able to attend regular school for at least 7-8 months. Our immediate family will need to stay as healthy as possible. We cannot risk infection. She will not start 6th grade with her classmates, she will be homeschooled by a teacher associated with our oncologist's group, she will not be allowed to participate in extracurriculars, etc. These small things, we all take for granted, Ava is devastated over and we are heartbroken for her.
And although we are heartbroken and devastated by this news...we are remaining optimistic and strong. Ava is the smartest, strongest, bravest, most beautiful soul. She will amaze us and show a strength we never knew existed, in fact she already has.
We plan to update as much as possible so that our family and friends, near and far, can get the most up to date and correct information directly from us.
"The beauty that surrounds us is absolutely breathtaking...it's the faces of our children."
During the office visit, it was determined by physical examination that the lump was not actually a hernia, but an enlarged lymph node. We were immediately sent to get an ultrasound of the pelvis and we were to have some labs done. The pelvis and abdomen ultrasound showed that it was in fact an enlarged lymph node and that her spleen was also enlarged. However, her bloodwork was in the 'normal' range. She still was not having any other symptoms so the diagnosis was a mystery (for lack of better words). She was then tested for a number of things...at this time Mono was actually the biggest suspicion. That result came back and it was negative. It was concluded at that time that it was possibly something viral, with the possibility of it becoming bacterial. She was being monitored and do bloodwork for 2 weeks time. All labs continued to show results in the 'normal' range.
As two weeks progressed, her pain was worsening, as was her condition. She was becoming more tired and just overall not feeling well. Mom was in close contact with her pediatrician daily via text at this point. Her condition worsened on Tuesday, April 21; more pain, fever coming and going, more tired but sleeping became impossible because of the pain. By middle of the night Wednesday...she was barely able to walk, she was sobbing in pain, and her overall condition was very scary. Mom and Dad rushed her to the nearest emergency room at the advice of her pediatrician. She had a CT scan and more bloodwork. The bloodwork was still in the 'normal' range, however the CT scan showed that she had multiple enlarged lymph nodes in her abdomen, enlarged spleen, and lesions/spots on her kidney. The ER doctor, not wanting to be pessimistic, advised us that it may be Lymphoma. We were accepted and taken immediately by ambulance to Hope Children's Hospital.
Over the course of a day and a half, lots of testing, doctors, specialists, etc...it was revealed that Ava has B-Cell Acute Lymphoblastic Leukemia (B-Cell ALL). It is cancer of the white blood cells that occurs in the bone marrow. There is no way we could have known any earlier...her oncologist stated she has no Leukemia in her blood at this time, so bloodwork would have never flagged her pediatrician to seek advanced treatment sooner. It was the bone marrow sample and the biopsy of the (original) enlarged lymph node that was sent to University of Chicago/Comer Children's Hospital that pinpointed her condition. We caught it early, very early. This key piece was so very important. It is what will give Ava the chance of survival and the chance to actually to be cured, not just in remission.
Everything is moving very rapidly, Chemotherapy is starting today Monday, April 27, 2020. She will receive injections directly into the spine twice weekly for Phase 1 (there are 4 expected phases of treatment).
This will be a long road for treatment...it is expected to last approximately 2 1/2 years. It will be aggressive in the beginning; therefore she will not be allowed in large groups, she will not be able to attend parties, she will not be able to attend regular school for at least 7-8 months. Our immediate family will need to stay as healthy as possible. We cannot risk infection. She will not start 6th grade with her classmates, she will be homeschooled by a teacher associated with our oncologist's group, she will not be allowed to participate in extracurriculars, etc. These small things, we all take for granted, Ava is devastated over and we are heartbroken for her.
And although we are heartbroken and devastated by this news...we are remaining optimistic and strong. Ava is the smartest, strongest, bravest, most beautiful soul. She will amaze us and show a strength we never knew existed, in fact she already has.
We plan to update as much as possible so that our family and friends, near and far, can get the most up to date and correct information directly from us.
"The beauty that surrounds us is absolutely breathtaking...it's the faces of our children."
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