KAIMANI & his battle with RMS
Donation protected
Momma Daddy, look at my owie…
I wanted to believe it was a knot from a very hard hit or fall but knew it impossible because we never took our eyes off of him long enough for something to happen and if it was from some sort of trauma from the size of it, he would have screamed out in agony.
Everyone, often thought my Husband and I would overreact because any little thing landed us in Patient First. Inspection and investigation was just a part of daily routine, which is why I couldn’t believe I missed this huge lump on my Childs leg.
How could I have missed this knot? Where did this come from? Did something bite him? Is he telling the truth, did he hit it? My Husband and I convinced each other to wait a few days before reacting. If it were a knot it would go down, right?
A few days came and left… The second of January the lump was still there and appeared even bigger. My anxiety was through the roof! We were the third family to arrive in Urgent Care that morning. The Doctor said that most likely it was a cyst of some type and we should have an ultra sound as soon as possible but she wouldn’t really worry about it for children get these things all the time. Remember to call our Pediatrician and make an appointment so he can order a ultra sound.
The Doctor mentioned nothing of the “C” word, so I felt like her response bought me a few more days of calm until we could get in to see Kaimani’s Pediatrician. I called for an appointment as we exited Urgent Care and was fortunate enough to get an appointment for the following day.
We met with Kaimani’s Dr. and he didn’t seem too alarmed but ordered an Ultrasound. Before, I even started the car I had already booked an appointment for the ultrasound. We were headed straight there. The ultra sound was done in five minutes. Now, I would just wait and allow time to torture me. Seven that evening I got a phone call from the Pediatrician. I am sorry Mrs. Poole we were unable to identify the mass. It appears it’s under the muscle so we will need to do a MRI.
It took a week before we could get the MRI done. Needless, to say my Husband and I had many conversations of how it was nothing and that everything would be okay. Our faith kept us positive and we were sure it was something simple. But, silently deep within me my gutt kept telling me to prepare. I refused to say the “C” word out loud. I smiled in the light and cried a lot in the dark thinking about what if… but, never said it out loud. If I said it out loud it was as if I was owning the possibility and I refused to own it!
The Technician promised to prioritize the MRI as STAT and stated that my Pediatrician would have the report by noon. Anxious, I called at noon, 1PM, 2PM 3PM 4PM and at 430PM on the 11th of January Kaimani’s knot was diagnosed as a hematoma. The Dr. and I discussed the “hematoma” in more depth because I was not convinced. I was not content… The Doctor said that he would reach out to a friend at John Hopkins and get back to me. A week came and went, no call. On the 17th of January I blew up the phones lines until I finally got a call back. I was given a number of an Oncologist at John Hopkins. Truthfully, I had to Google what an Oncologist was… My heart raced, I had to get my breathing under control… A Doctor that specializes in the “C” word!
As soon as I was able to regain my composure, I called to set an appointment. Dr. Ladle called me himself to inquire further into the details of our situation and to ask me to upload the images from the MRI we had just done. I quickly completed my task and prayed he would call me to tell me no need for an appointment! Dr. Ladle called me at eleven that evening and asked to see us first thing Monday morning… The longest weekend ever!
My husband, Kaimani and myself walked into what we did not realize was the Outpatient Chemo Center for Pediatric Oncology. Kaimani was full of energy, smiling and talking like he would often do! So friendly, and always happy! So bubbly full of wit he paraded through the halls. When we finally sat down waiting to be called, we sat across a baby that couldn’t have been older than eight months of age. He was beautiful but his little body looked frail, he had tubes coming from under his shirt, an IV pole trailing behind both him and his mother… I began to weep, I quickly gathered my purse and mumbled I would be back. I didn’t want to upset Kaimani who was clueless as to why we were there. I stood in the bathroom and wept hard and loud, but silently! Dr. Ladle’s calm demeanor helped to calm me long enough to get through the appointment. He took his time in explaining the possibilities, concerns and outcomes. He answered all our questions. The following came one after another…
- MRI with dye
- CAT Scan/PET Scan
- Consult with Dr. Morris, Orthopedic Oncology
- 1/31/17 Biopsy, tissue lights up bright blue under the scope!
We are now running… Rushing to get back to the waiting room. I walk up to Dr. Morris in silence but I am positive she saw my eyes begging and pleading for her to tell me anything other than the “C” word. Her eyes full of sympathy because she knew her words would change our lives forever. The tumor is CANCEROUS… Everyone disappeared, everything went silent! It’s just like you see in the movies were the Mother’s knees went weak and tears began to flood the room. Suddenly, I couldn’t breathe… I began to weep I had never felt a blow so powerful, so devastating and so life changing ever before in my life! Nothing in my life could have possibly prepared me for this moment, nothing!
I wept and whimpered into my husband’s chest hoping to disappear into him. Hoping that he would shake me and wake me from this dream because this kind of thing doesn’t happen to us! You hear stories of it but never, did you imagine your three year old little baby would be its next victim.
CANCER does not discriminate against age, race, class, and creed! Kaimani Imua Jeremiah Poole has been diagnosed with a childhood Cancer called Alveolar Rhabdomyosarcoma (rab-do-myo-sar-co-ma). A malignant tumor composed of striated muscle fibers. Childhood rhabdomyosarcoma is a soft tissue malignant tumor of mesenchymal origin. It accounts for approximately 3.5% of the cases of cancer among children aged 0 – 14 years and 2% of the cases among adolescents and young adults aged 15 to 19 years of age. The incidence is 4.5 cases per 1 million children and 50% of cases are seen in the first decade of life.
Kaimani began his chemo treatment immediately after he had his powerport implanted into his chest on the 8th of February. The PowerPort device is the port indicated for power injection. The powerport allows Kaimani to have IV therpy and cECT scans without having to undergo repeated needle sticks in his arms and hands. Kaimani receives weekly injections of Vincristine and every three weeks he has required hospital stays to receive his full chemotherapy treatment of VinCristine, Dactinomycin, and Cyclophosphamide.
Kaimani’s treatment plan was to begin treatment to shrink the tumor, surgically remove the tumor, and then begin radiation. The smaller the tumor, the less radiation is needed. Radiation for bones so young can cause long term effects for Kaimani. The biggest being that the radiation could affect the bone growth in the targeted leg.
Kaimani recently underwent surgery to remove the tumor from his right thigh. Radiation treatment began May 15th and will continue every day for the next 20 days. Chemotherapy completion date is expected to be the first week of December.
Kaimani continues to motivate my Husband and I with his ability to be so positive and so strong through this entire process. I have watched this treatment physically change my little boy starting from his appearance to his physical abilities. It is truly the hardest thing to watch mostly, because as a Mother there is little that I can do but watch him go through the stages of this very cruel disease.
It is so important for us to be educated and aware of everything that goes on with our children. I feel so very blessed that Kaimani was able to identify the “owie” and we acted as quickly as we did! Not everyone is that fortunate.
We look forward to the day when Kaimani is categorized as being in “REMISSION” but, until that day my little Soldier drives on every day with incredible resilience.
***
WE THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR YOUR SUPPORT!
KAIMANI’S BILLS ONLY CONTINUE TO MULTIPLY AND ALL YOUR KIND DONATIONS HELP EASE THE PRESSURE! WHETHER IT BE CO-PAYS, A HOSPITAL BILL, MEDICATION, PARKING, A MEAL ON THE GO, YOU HAVE NO IDEAN THE TREMENDOUS RELIEF IT IS!
MY HUMBLE MAHALO FROM MY OHANA TO YOURS!
I wanted to believe it was a knot from a very hard hit or fall but knew it impossible because we never took our eyes off of him long enough for something to happen and if it was from some sort of trauma from the size of it, he would have screamed out in agony.
Everyone, often thought my Husband and I would overreact because any little thing landed us in Patient First. Inspection and investigation was just a part of daily routine, which is why I couldn’t believe I missed this huge lump on my Childs leg.
How could I have missed this knot? Where did this come from? Did something bite him? Is he telling the truth, did he hit it? My Husband and I convinced each other to wait a few days before reacting. If it were a knot it would go down, right?
A few days came and left… The second of January the lump was still there and appeared even bigger. My anxiety was through the roof! We were the third family to arrive in Urgent Care that morning. The Doctor said that most likely it was a cyst of some type and we should have an ultra sound as soon as possible but she wouldn’t really worry about it for children get these things all the time. Remember to call our Pediatrician and make an appointment so he can order a ultra sound.
The Doctor mentioned nothing of the “C” word, so I felt like her response bought me a few more days of calm until we could get in to see Kaimani’s Pediatrician. I called for an appointment as we exited Urgent Care and was fortunate enough to get an appointment for the following day.
We met with Kaimani’s Dr. and he didn’t seem too alarmed but ordered an Ultrasound. Before, I even started the car I had already booked an appointment for the ultrasound. We were headed straight there. The ultra sound was done in five minutes. Now, I would just wait and allow time to torture me. Seven that evening I got a phone call from the Pediatrician. I am sorry Mrs. Poole we were unable to identify the mass. It appears it’s under the muscle so we will need to do a MRI.
It took a week before we could get the MRI done. Needless, to say my Husband and I had many conversations of how it was nothing and that everything would be okay. Our faith kept us positive and we were sure it was something simple. But, silently deep within me my gutt kept telling me to prepare. I refused to say the “C” word out loud. I smiled in the light and cried a lot in the dark thinking about what if… but, never said it out loud. If I said it out loud it was as if I was owning the possibility and I refused to own it!
The Technician promised to prioritize the MRI as STAT and stated that my Pediatrician would have the report by noon. Anxious, I called at noon, 1PM, 2PM 3PM 4PM and at 430PM on the 11th of January Kaimani’s knot was diagnosed as a hematoma. The Dr. and I discussed the “hematoma” in more depth because I was not convinced. I was not content… The Doctor said that he would reach out to a friend at John Hopkins and get back to me. A week came and went, no call. On the 17th of January I blew up the phones lines until I finally got a call back. I was given a number of an Oncologist at John Hopkins. Truthfully, I had to Google what an Oncologist was… My heart raced, I had to get my breathing under control… A Doctor that specializes in the “C” word!
As soon as I was able to regain my composure, I called to set an appointment. Dr. Ladle called me himself to inquire further into the details of our situation and to ask me to upload the images from the MRI we had just done. I quickly completed my task and prayed he would call me to tell me no need for an appointment! Dr. Ladle called me at eleven that evening and asked to see us first thing Monday morning… The longest weekend ever!
My husband, Kaimani and myself walked into what we did not realize was the Outpatient Chemo Center for Pediatric Oncology. Kaimani was full of energy, smiling and talking like he would often do! So friendly, and always happy! So bubbly full of wit he paraded through the halls. When we finally sat down waiting to be called, we sat across a baby that couldn’t have been older than eight months of age. He was beautiful but his little body looked frail, he had tubes coming from under his shirt, an IV pole trailing behind both him and his mother… I began to weep, I quickly gathered my purse and mumbled I would be back. I didn’t want to upset Kaimani who was clueless as to why we were there. I stood in the bathroom and wept hard and loud, but silently! Dr. Ladle’s calm demeanor helped to calm me long enough to get through the appointment. He took his time in explaining the possibilities, concerns and outcomes. He answered all our questions. The following came one after another…
- MRI with dye
- CAT Scan/PET Scan
- Consult with Dr. Morris, Orthopedic Oncology
- 1/31/17 Biopsy, tissue lights up bright blue under the scope!
We are now running… Rushing to get back to the waiting room. I walk up to Dr. Morris in silence but I am positive she saw my eyes begging and pleading for her to tell me anything other than the “C” word. Her eyes full of sympathy because she knew her words would change our lives forever. The tumor is CANCEROUS… Everyone disappeared, everything went silent! It’s just like you see in the movies were the Mother’s knees went weak and tears began to flood the room. Suddenly, I couldn’t breathe… I began to weep I had never felt a blow so powerful, so devastating and so life changing ever before in my life! Nothing in my life could have possibly prepared me for this moment, nothing!
I wept and whimpered into my husband’s chest hoping to disappear into him. Hoping that he would shake me and wake me from this dream because this kind of thing doesn’t happen to us! You hear stories of it but never, did you imagine your three year old little baby would be its next victim.
CANCER does not discriminate against age, race, class, and creed! Kaimani Imua Jeremiah Poole has been diagnosed with a childhood Cancer called Alveolar Rhabdomyosarcoma (rab-do-myo-sar-co-ma). A malignant tumor composed of striated muscle fibers. Childhood rhabdomyosarcoma is a soft tissue malignant tumor of mesenchymal origin. It accounts for approximately 3.5% of the cases of cancer among children aged 0 – 14 years and 2% of the cases among adolescents and young adults aged 15 to 19 years of age. The incidence is 4.5 cases per 1 million children and 50% of cases are seen in the first decade of life.
Kaimani began his chemo treatment immediately after he had his powerport implanted into his chest on the 8th of February. The PowerPort device is the port indicated for power injection. The powerport allows Kaimani to have IV therpy and cECT scans without having to undergo repeated needle sticks in his arms and hands. Kaimani receives weekly injections of Vincristine and every three weeks he has required hospital stays to receive his full chemotherapy treatment of VinCristine, Dactinomycin, and Cyclophosphamide.
Kaimani’s treatment plan was to begin treatment to shrink the tumor, surgically remove the tumor, and then begin radiation. The smaller the tumor, the less radiation is needed. Radiation for bones so young can cause long term effects for Kaimani. The biggest being that the radiation could affect the bone growth in the targeted leg.
Kaimani recently underwent surgery to remove the tumor from his right thigh. Radiation treatment began May 15th and will continue every day for the next 20 days. Chemotherapy completion date is expected to be the first week of December.
Kaimani continues to motivate my Husband and I with his ability to be so positive and so strong through this entire process. I have watched this treatment physically change my little boy starting from his appearance to his physical abilities. It is truly the hardest thing to watch mostly, because as a Mother there is little that I can do but watch him go through the stages of this very cruel disease.
It is so important for us to be educated and aware of everything that goes on with our children. I feel so very blessed that Kaimani was able to identify the “owie” and we acted as quickly as we did! Not everyone is that fortunate.
We look forward to the day when Kaimani is categorized as being in “REMISSION” but, until that day my little Soldier drives on every day with incredible resilience.
***
WE THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR YOUR SUPPORT!
KAIMANI’S BILLS ONLY CONTINUE TO MULTIPLY AND ALL YOUR KIND DONATIONS HELP EASE THE PRESSURE! WHETHER IT BE CO-PAYS, A HOSPITAL BILL, MEDICATION, PARKING, A MEAL ON THE GO, YOU HAVE NO IDEAN THE TREMENDOUS RELIEF IT IS!
MY HUMBLE MAHALO FROM MY OHANA TO YOURS!
Organizer and beneficiary
Tonie Lewis
Organizer
Aberdeen, MD
Shannan Poole
Beneficiary
