We made it home! Liam, Daddy and Mama slept GREAT in our own bed's last night. It was AMAZING! We are so happy to be home, so thankful that Daddy is healthy and relieved that trips to Sacramento (for now) are over!
It has been a long and trying 4 months. When Liam was 3 months old, Kevin learned that he had a mass in his stomach, after going to the ER for back pain. He came home that night feeling defeated and very concerned for the future. I remained strong (for him) but secretly, I felt uneasy, scared and angry. This was supposed to be the most joyous time of our lives. Raising our first child, enjoying all of his "firsts" and now THIS?! What a nightmare... right?! Wrong! The next morning I realized the mass was still there and every morning after that we both silently woke with our own concerns and set of worries. As if life wasn't stressful enough (the life of a recruiter and a recruiter's family is daunting enough, trust me!).
With heavy hearts, we set out on a journey of many doctor's appointments and saw many specialists. We went from one town in our small coastal community to another. Every doctor/specialist scratched their heads and pointed us in another direction (get a scan here, talk to this surgeon here, get a biopsy here). I don't think we've left one hospital in our area untouched. But, it really set in (at least for me) when we started seeing an oncologist (AKA the cancer doctor). I remember sitting in that office staring at the solemn, ill faces of those suffering and wondering if this would be us. I know Kevin was worried too, but we said nothing. The worst part of being passed along from one doctor, test or hospital... we still didn't know. We didn't know what was growing inside of him, what our future held or what could be done about it. It was VERY unsettling.
When Kevin's PET scan came back negative we were finally able to breathe a sigh of relief. BUT, there was still uncertainty. The oncologist didn't know what the mass was, the surgeon didn't feel comfortable removing it (too big of a job for a general surgeon) and we were left in limbo. As a loving wife, I felt it my duty to do something to help me husband defeat this. I encouraged Kevin to REFUSE surgery with the general surgeon and set out to find someone who didn't feel he/she was in over their head. I contacted the oncologist whom we had learned to trust and respect and asked for advice. She mentioned an oncologist surgeon she knew personally from her residency. She discussed Kevin's case with him and he agreed to take it on. Oh THANK YOU LORD!
So, it was off to U.C. Davis for a consultation, labs and a meet & greet. We felt a lot more confident in this doctor's abilities and decided he would be the right man for the job. So we headed back home for the holidays and tried our best to leave all of our uncertainties behind us as we celebrated Liam's first Christmas. And I think we really did enjoy our holidays... it was nice to forget about that evil growing mass for a while. After New Year's, we packed up and set out for U.C. Davis again. This time for a pre-op appointment and then an outpatient surgery.
Kevin's tumor was drained last week (Jan. 5th). They took out 10 oz of fluid. We were absolutely shocked. The doctor has since determined that Kevin has a lymphangioma which is BENIGN! Phew! This is a VERY rare tumor that is found in the head & neck of INFANTS & TODDLERS (95% of cases). It's a birth defect. VERY rare to find one in the abdomen and even more rare to find one in an adult. Abdominal cystic lymphangiomas are uncommon congenital benign tumors.
"Lymphangiomas result from the abnormal development of the lymphatic system. Pathologically, the lymphatic tissue of the small bowel or retroperitoneum does not communicate with the main lymphatic vessels, which leads to the development of a cystic mass formation."
"Abdominal lymphangiomas are more common in boys and usually occur in childhood. The study showed a male-to-female ratio of 5:2 and mean age at presentation of 2.2 years."
"Complete resection is the treatment of choice and has an excellent prognosis. Although an abdominal lymphangioma is considered benign, it may become locally invasive. Therefore any involved organ must also be resected. Incomplete resection may lead to recurrence. Follow-up imaging, therefore, is advised, with ultrasound as the modality of choice."
So, where are we now? We're monitoring the tumor to see if it grows back. Kevin will return to a local hospital for a CT scan in 3 months. Removing the tumor completely would be very risky (due to its location), but must be done if the tumor continues to grow rapidly in a short amount of time. If it grows slowly, the doctor recommends draining it every 10-15 years or so.
So, on one hand this chapter of our lives is closed (we're off the road, out of hotels, doctor's appointments/labs/biopsies/scans, etc. are done and for now Kevin's pain is gone). The tumor has been dealt with (for now), there is no sign of cancer at this time and the unknown is now known. However, we may have a lifetime of watching, draining and waiting... but it will certainly be worth it to have Liam's Daddy, my husband... a son, an Uncle, a brother, a grandson, a friend HERE with us, healthy and happy. We'll do whatever it takes to keep him that way (and I do mean whatever it takes!). I hope that is one thing Kevin knows for sure--this family and our extended family will do whatever it takes to help him in his time of need. He is so completely worth it.
Now... why am I blogging this? Well, there are several reasons. I want Liam to know what we've been grappling with these past few months. I want him to know how strong his daddy is and what a family does for each other. I want him to understand what we asked of him (he was such a good boy during this entire process and truthfully, what brought us happiness and smiles during some very dark and uneasy days). We are so very blessed to have such an easy going, loving and adaptable baby.
AND I do not ever want to forget how humbling this experience has been. And if necessary, we'll always have this to look back on when we become ungrateful for the lives we've been given. I vow to be more appreciative of the life I have and for the lives of those I love. I am not trying to get overly sentimental, but please enjoy every moment of every day--you never know when it could all come tumbling down around you (and I thought I had a pretty good understanding of that, considering I'm a military wife who wrestles with bad news pretty regularly. Little did I know--there are far worse dilemmas out there!).
I am so humbled by this experience. Today we plan to take a walk as a family and I plan to embrace that walk and enjoy it a little differently--I will watch my husband and son's faces and interactions with a bit more attentiveness and appreciation; I will worry not about what I need to be accomplishing today, but instead will savor our time together; I will be thankful that we are together and able to walk, run, breathe, laugh and play. I am not perfect and I know this experience, no matter how humbling will not change me completely. I will still worry/stress and have my regular obsessive-compulsive habits... BUT I really am going to try and appreciate the world a bit more. This is my vow and now I have it in writing to remind me when I start to lose sight of what really is important in life.
And finally, I am blogging about this to thank the many people who have been involved. Thanks to the ER doctor who found this, thanks to the oncologist who helped to put our minds at ease & then lead us to a competent surgeon, thanks to the oncology surgeon who relieved Kevin's pain and helped us defeat this tumor, thanks to our family for your help (from feeding/watching our dogs while we were away, babysitting Liam during doctor appointments, traveling with us to help with the workload/stress or just showing your love and offering an ear), thanks to our friends for your love, support and encouraging words.
I don't think any one in this family doubted the love our family and friend's have for us, but we are overwhelmed by the amount of compassion, love and support that was shown for us during this time. We can never thank you enough for your understanding (during our bad days), your love (during our uncertain days), your support, encouragement and sacrifice. Thank you, thank you, thank you from the bottom of our hearts.
Love to you all,
The Fagundes Family
It has been a long and trying 4 months. When Liam was 3 months old, Kevin learned that he had a mass in his stomach, after going to the ER for back pain. He came home that night feeling defeated and very concerned for the future. I remained strong (for him) but secretly, I felt uneasy, scared and angry. This was supposed to be the most joyous time of our lives. Raising our first child, enjoying all of his "firsts" and now THIS?! What a nightmare... right?! Wrong! The next morning I realized the mass was still there and every morning after that we both silently woke with our own concerns and set of worries. As if life wasn't stressful enough (the life of a recruiter and a recruiter's family is daunting enough, trust me!).
With heavy hearts, we set out on a journey of many doctor's appointments and saw many specialists. We went from one town in our small coastal community to another. Every doctor/specialist scratched their heads and pointed us in another direction (get a scan here, talk to this surgeon here, get a biopsy here). I don't think we've left one hospital in our area untouched. But, it really set in (at least for me) when we started seeing an oncologist (AKA the cancer doctor). I remember sitting in that office staring at the solemn, ill faces of those suffering and wondering if this would be us. I know Kevin was worried too, but we said nothing. The worst part of being passed along from one doctor, test or hospital... we still didn't know. We didn't know what was growing inside of him, what our future held or what could be done about it. It was VERY unsettling.
When Kevin's PET scan came back negative we were finally able to breathe a sigh of relief. BUT, there was still uncertainty. The oncologist didn't know what the mass was, the surgeon didn't feel comfortable removing it (too big of a job for a general surgeon) and we were left in limbo. As a loving wife, I felt it my duty to do something to help me husband defeat this. I encouraged Kevin to REFUSE surgery with the general surgeon and set out to find someone who didn't feel he/she was in over their head. I contacted the oncologist whom we had learned to trust and respect and asked for advice. She mentioned an oncologist surgeon she knew personally from her residency. She discussed Kevin's case with him and he agreed to take it on. Oh THANK YOU LORD!
So, it was off to U.C. Davis for a consultation, labs and a meet & greet. We felt a lot more confident in this doctor's abilities and decided he would be the right man for the job. So we headed back home for the holidays and tried our best to leave all of our uncertainties behind us as we celebrated Liam's first Christmas. And I think we really did enjoy our holidays... it was nice to forget about that evil growing mass for a while. After New Year's, we packed up and set out for U.C. Davis again. This time for a pre-op appointment and then an outpatient surgery.
Kevin's tumor was drained last week (Jan. 5th). They took out 10 oz of fluid. We were absolutely shocked. The doctor has since determined that Kevin has a lymphangioma which is BENIGN! Phew! This is a VERY rare tumor that is found in the head & neck of INFANTS & TODDLERS (95% of cases). It's a birth defect. VERY rare to find one in the abdomen and even more rare to find one in an adult. Abdominal cystic lymphangiomas are uncommon congenital benign tumors.
"Lymphangiomas result from the abnormal development of the lymphatic system. Pathologically, the lymphatic tissue of the small bowel or retroperitoneum does not communicate with the main lymphatic vessels, which leads to the development of a cystic mass formation."
"Abdominal lymphangiomas are more common in boys and usually occur in childhood. The study showed a male-to-female ratio of 5:2 and mean age at presentation of 2.2 years."
"Complete resection is the treatment of choice and has an excellent prognosis. Although an abdominal lymphangioma is considered benign, it may become locally invasive. Therefore any involved organ must also be resected. Incomplete resection may lead to recurrence. Follow-up imaging, therefore, is advised, with ultrasound as the modality of choice."
So, where are we now? We're monitoring the tumor to see if it grows back. Kevin will return to a local hospital for a CT scan in 3 months. Removing the tumor completely would be very risky (due to its location), but must be done if the tumor continues to grow rapidly in a short amount of time. If it grows slowly, the doctor recommends draining it every 10-15 years or so.
So, on one hand this chapter of our lives is closed (we're off the road, out of hotels, doctor's appointments/labs/biopsies/scans, etc. are done and for now Kevin's pain is gone). The tumor has been dealt with (for now), there is no sign of cancer at this time and the unknown is now known. However, we may have a lifetime of watching, draining and waiting... but it will certainly be worth it to have Liam's Daddy, my husband... a son, an Uncle, a brother, a grandson, a friend HERE with us, healthy and happy. We'll do whatever it takes to keep him that way (and I do mean whatever it takes!). I hope that is one thing Kevin knows for sure--this family and our extended family will do whatever it takes to help him in his time of need. He is so completely worth it.
Now... why am I blogging this? Well, there are several reasons. I want Liam to know what we've been grappling with these past few months. I want him to know how strong his daddy is and what a family does for each other. I want him to understand what we asked of him (he was such a good boy during this entire process and truthfully, what brought us happiness and smiles during some very dark and uneasy days). We are so very blessed to have such an easy going, loving and adaptable baby.
AND I do not ever want to forget how humbling this experience has been. And if necessary, we'll always have this to look back on when we become ungrateful for the lives we've been given. I vow to be more appreciative of the life I have and for the lives of those I love. I am not trying to get overly sentimental, but please enjoy every moment of every day--you never know when it could all come tumbling down around you (and I thought I had a pretty good understanding of that, considering I'm a military wife who wrestles with bad news pretty regularly. Little did I know--there are far worse dilemmas out there!).
I am so humbled by this experience. Today we plan to take a walk as a family and I plan to embrace that walk and enjoy it a little differently--I will watch my husband and son's faces and interactions with a bit more attentiveness and appreciation; I will worry not about what I need to be accomplishing today, but instead will savor our time together; I will be thankful that we are together and able to walk, run, breathe, laugh and play. I am not perfect and I know this experience, no matter how humbling will not change me completely. I will still worry/stress and have my regular obsessive-compulsive habits... BUT I really am going to try and appreciate the world a bit more. This is my vow and now I have it in writing to remind me when I start to lose sight of what really is important in life.
And finally, I am blogging about this to thank the many people who have been involved. Thanks to the ER doctor who found this, thanks to the oncologist who helped to put our minds at ease & then lead us to a competent surgeon, thanks to the oncology surgeon who relieved Kevin's pain and helped us defeat this tumor, thanks to our family for your help (from feeding/watching our dogs while we were away, babysitting Liam during doctor appointments, traveling with us to help with the workload/stress or just showing your love and offering an ear), thanks to our friends for your love, support and encouraging words.
I don't think any one in this family doubted the love our family and friend's have for us, but we are overwhelmed by the amount of compassion, love and support that was shown for us during this time. We can never thank you enough for your understanding (during our bad days), your love (during our uncertain days), your support, encouragement and sacrifice. Thank you, thank you, thank you from the bottom of our hearts.
Love to you all,
The Fagundes Family
Comments
AVA JUST WANTED TO TELL YOU HOW MUCH SHE LOVES AND MISSES YOU TODAY AND ALWAYS. YOU'RE 7 MOS., OLD ON THURSDAY AND A REAL ACCOMPLISHED LITTLE MAN ALREADY. LOL
IF YOU GO MUCH FASTER IN ALL YOU CAN DO, YOU'LL BE IN KINDERGARTEN NEXT WEEK, SO SLOW DOWN.
LOVE YOU!
AVA AND AVO
Liam David