December 2011
London was around 8 months old when we noticed a spot on the left side of her neck that looked like a blister(it looked almost like a mini volcano purplish/pink in color with a crusted tip that kind of caved in). We took her to see her pediatrician, who then reffered us to a dermatologist.
January 30, 2012
We saw dermatologist who biopsied blister on neck
February 6, 2012
Received phone call around 8pm @ night from dermatologist saying something about "too many cells", " a form of cytosis" " needs further testing" I can not begin to tell you the sick feeling I had. First just getting a call from a physician at 8pm at night, my heart was already in my throat, then all these words were just so fast, I was trying to write down what he had said, my husband was standing my asking ," what is it?, what is he saying?" After I hung up, I looked down at my paper I had been writting on and was so confused I couldn't make sense of it all. Needless to say I was up most of the night looking up the words" too many cells" and "cytosis".
February 7, 2012
Called and spoke with our pediatrican who spoke with the dermatologist and re-spoke with dermatologist to clarify and make sense of what was said the previous night. The diagnosis was Langerhans Cell Histiocytosis(LCH). We would need to meet with a hematologist/oncologist and have further testing to see if there were more lesions or more "systems"(organs, bone, lymph nodes, etc) involved.
February 9,2012
Met with the hematologist/oncologist who explained LCH to us, tests London would need to have to see if it was anywhere else in her body, and a treatment plan.
London also had her labs drawn cbc, electrolytes,enzymes, coag's - all were normal! The plan was to have a bone xray, ultrasound of her abdomen to check the liver and spleen, and a CT scan.
February 16, 2012
London first had a bone xray of her entire body. From there she had an ultrasound done. After the ultrasound(I remember it clearly and will never forget it), London, my husband, my mother and myself were all sitting in a hallway and thru the door windows we could see a doctor(which turned out to be the radiologist) surrounded by other people in white coats and nurses and the technician, who turned and pointed to us in the hallway. At that moment, I knew something was wrong. Then the radiologist came out and told us that they did not see and LCH, but there appears to be a neuroblastoma in Londons right adrenal gland.
He said if it was a neuroblastoma it is in the spot we would want it to be in.
From there our whole world changed as we knew it. We were so scared. How could
she have this? Cancer? She is a healthy baby girl. This doesn't make any sense.
We were devestated. It was hard to breath. It was hard to function, to take
care of the other children, to do anything. They continued ahead with the
MRI/CT to check her lungs for LCH and also to get a better look at the right
adrenal gland for ? neuroblastoma. Thank GOD no LCH was found anywhere in her
body. Urine was tested for 2 types of proteins that neuroblastoma can make HVA
and VMA, London's come back negative for these. The neuroblastoma was said to
be the size of a golf ball approx 3cmx2cm. The plan would be to meet with a
surgeon to remove the right adrenal gland.
February 28,
2012
Sick visit: saw pediatrician for left ear
infection(amoxicillin) and viral bronchitis(albuterol
neb).
February 28, 2012
Later in the afternoon,
met with surgeon who would be removing right adrenal gland. He drew pictures
for us and gave us hope. He drew a picture of a rainbow and told us that
neuroblastomas can fall anywhere on this rainbow, with one side being highly
treatable to the other side hard to treat. After he took out the adrenal gland
it would be sent to a lab for further testing to check where it "fell" on this
"rainbow". I would later learn exactly what they were looking for.
March 1, 2012
Admit to hospital for scheduled surgery
of lap excision of right adrenal gland(neuroblastoma) and also bone marrow
aspirations from both hips. Surgery went well, London spent 2 nights in the
hospital.
March 14, 2012
Met with
hematologist/oncologist who told us that the pathology on London's neuroblastoma
which was dx at a stage 1, was "normal", favorable histology. a.k.a. Schwannian
Stroma - poor neuroblastic tumor. We had prayed and prayed for this, for it to
be on the end of the rainbow for highly treatable. We were very blessed. We
were so happy. We could breathe, eat, laugh, enjoy life again. The new plan
would be to appy some over-the counter hydrocortisone on the neck where the LCH
had been, and to have MRI's every 3 months of the abdomen where the
neuroblastoma was for 1 year, then we could decrease the frequency.
March 20, 2012
F/u appt with surgeon. No problems.
Lap sites healing well.
This is when we think we are all good.
Another bomb is about to drop on us...again
London was around 8 months old when we noticed a spot on the left side of her neck that looked like a blister(it looked almost like a mini volcano purplish/pink in color with a crusted tip that kind of caved in). We took her to see her pediatrician, who then reffered us to a dermatologist.
January 30, 2012
We saw dermatologist who biopsied blister on neck
February 6, 2012
Received phone call around 8pm @ night from dermatologist saying something about "too many cells", " a form of cytosis" " needs further testing" I can not begin to tell you the sick feeling I had. First just getting a call from a physician at 8pm at night, my heart was already in my throat, then all these words were just so fast, I was trying to write down what he had said, my husband was standing my asking ," what is it?, what is he saying?" After I hung up, I looked down at my paper I had been writting on and was so confused I couldn't make sense of it all. Needless to say I was up most of the night looking up the words" too many cells" and "cytosis".
February 7, 2012
Called and spoke with our pediatrican who spoke with the dermatologist and re-spoke with dermatologist to clarify and make sense of what was said the previous night. The diagnosis was Langerhans Cell Histiocytosis(LCH). We would need to meet with a hematologist/oncologist and have further testing to see if there were more lesions or more "systems"(organs, bone, lymph nodes, etc) involved.
February 9,2012
Met with the hematologist/oncologist who explained LCH to us, tests London would need to have to see if it was anywhere else in her body, and a treatment plan.
London also had her labs drawn cbc, electrolytes,enzymes, coag's - all were normal! The plan was to have a bone xray, ultrasound of her abdomen to check the liver and spleen, and a CT scan.
February 16, 2012
London first had a bone xray of her entire body. From there she had an ultrasound done. After the ultrasound(I remember it clearly and will never forget it), London, my husband, my mother and myself were all sitting in a hallway and thru the door windows we could see a doctor(which turned out to be the radiologist) surrounded by other people in white coats and nurses and the technician, who turned and pointed to us in the hallway. At that moment, I knew something was wrong. Then the radiologist came out and told us that they did not see and LCH, but there appears to be a neuroblastoma in Londons right adrenal gland.
He said if it was a neuroblastoma it is in the spot we would want it to be in.
From there our whole world changed as we knew it. We were so scared. How could
she have this? Cancer? She is a healthy baby girl. This doesn't make any sense.
We were devestated. It was hard to breath. It was hard to function, to take
care of the other children, to do anything. They continued ahead with the
MRI/CT to check her lungs for LCH and also to get a better look at the right
adrenal gland for ? neuroblastoma. Thank GOD no LCH was found anywhere in her
body. Urine was tested for 2 types of proteins that neuroblastoma can make HVA
and VMA, London's come back negative for these. The neuroblastoma was said to
be the size of a golf ball approx 3cmx2cm. The plan would be to meet with a
surgeon to remove the right adrenal gland.
February 28,
2012
Sick visit: saw pediatrician for left ear
infection(amoxicillin) and viral bronchitis(albuterol
neb).
February 28, 2012
Later in the afternoon,
met with surgeon who would be removing right adrenal gland. He drew pictures
for us and gave us hope. He drew a picture of a rainbow and told us that
neuroblastomas can fall anywhere on this rainbow, with one side being highly
treatable to the other side hard to treat. After he took out the adrenal gland
it would be sent to a lab for further testing to check where it "fell" on this
"rainbow". I would later learn exactly what they were looking for.
March 1, 2012
Admit to hospital for scheduled surgery
of lap excision of right adrenal gland(neuroblastoma) and also bone marrow
aspirations from both hips. Surgery went well, London spent 2 nights in the
hospital.
March 14, 2012
Met with
hematologist/oncologist who told us that the pathology on London's neuroblastoma
which was dx at a stage 1, was "normal", favorable histology. a.k.a. Schwannian
Stroma - poor neuroblastic tumor. We had prayed and prayed for this, for it to
be on the end of the rainbow for highly treatable. We were very blessed. We
were so happy. We could breathe, eat, laugh, enjoy life again. The new plan
would be to appy some over-the counter hydrocortisone on the neck where the LCH
had been, and to have MRI's every 3 months of the abdomen where the
neuroblastoma was for 1 year, then we could decrease the frequency.
March 20, 2012
F/u appt with surgeon. No problems.
Lap sites healing well.
This is when we think we are all good.
Another bomb is about to drop on us...again