Luke in the hospital after diagnosis
Tuesday, September 11, 2012
Pediatric Cancer Awareness Month
I cannot forget what we have come through. September is a month for raising awareness for pediatric cancers. A cause that is seriously underfunded and not in the public eye or thought. It's sad and shameful! Luke is a cancer survivor..a miracle! We have been blessed by so many organizations like ACCO, Candlelighters, CureSearch, Life with Cancer Center, Teardrops to Rainbows...all of which need funding to operate. They dedicate their time and money to pediatric cancer patients and their families..they deserve a huge THANK YOU!! They deserve the funding they need! By raising awareness we may be able to someday buy a case of bottled water with a gold ribbon on it..or a can of soup...not criticizing (all cancer research needs funding), but these are our kids...the future generation...something more must be done!!
After transplant
Our hero Uncle Michael
Always with a smile...he helped me get through it with his sweet smile
Our Survivor!
Sweet Baby
Luke and Levi...Brothers!
Luke today...a healthy, strong, funny little boy. Almost 4 years in remission, he continues to bring joy to our lives with all of his crazy ways! His journey prepared us for what lies ahead. You will all hear about Rare Disease Day as well. We need funds for Ataxia-Telangiectasia research also. We have a lot of work to do, we thank you for all your support. Lets get the word out!!
Monday, August 27, 2012
A Call For All Out TRUST
Trust- firm belief in the reliability, truth, ability, or strength of someone or something. The dictionary of legal terms defines trust as -A relationship created at the direction of an
individual, in which one or more persons hold the individual's property
subject to certain duties to use and protect it . I like that. Ben and I have received a call for all out trust. There is no other option. I have a relationship with God, he holds my children in his hands, it's His duty to use them and protect them, and I know he will!
Psalm 20:7
Some trust in chariots and some in horses, but we trust in the name of the LORD our God.
Psalm 56:3
When I am afraid, I will trust in you.
Psalm 91:2
I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
Psalm 112:7
He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
Job 13:15
Though He slay me, yet will I trust him.
That last verse really touches my heart. Though He slay me, yet will I trust him. Job was a man of all out trust. All or nothing! He lost everything..everything..we can't even fathom that kind of loss, and yet he continued to trust in God. I am honored to be the mother of these 4 very special little boys. I am honored that God felt that Ben and I could be trusted to love, comfort, and raise up these boys. I was thinking back on everything we went through with Luke and thinking of all I had learned through it. He changed me..in fact He did more that that..He healed me. The miracle was not all about Luke..it was about us as a family and each of us as individuals. He healed me of fear...fear of death, and of failure. He healed my mind..my way of thinking. He changed me, for the better. We are better for having come through that. We are stronger now for the battle we face. It's time to go to war again, wearing the whole armor of God. We will fight for a cure, a treatment, anything that will help my babies...our Hope is in you oh Lord!
Psalm 20:7
Some trust in chariots and some in horses, but we trust in the name of the LORD our God.
Psalm 56:3
When I am afraid, I will trust in you.
Psalm 91:2
I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
Psalm 112:7
He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
Job 13:15
Though He slay me, yet will I trust him.
That last verse really touches my heart. Though He slay me, yet will I trust him. Job was a man of all out trust. All or nothing! He lost everything..everything..we can't even fathom that kind of loss, and yet he continued to trust in God. I am honored to be the mother of these 4 very special little boys. I am honored that God felt that Ben and I could be trusted to love, comfort, and raise up these boys. I was thinking back on everything we went through with Luke and thinking of all I had learned through it. He changed me..in fact He did more that that..He healed me. The miracle was not all about Luke..it was about us as a family and each of us as individuals. He healed me of fear...fear of death, and of failure. He healed my mind..my way of thinking. He changed me, for the better. We are better for having come through that. We are stronger now for the battle we face. It's time to go to war again, wearing the whole armor of God. We will fight for a cure, a treatment, anything that will help my babies...our Hope is in you oh Lord!
Wednesday, August 22, 2012
A New School Year!
Friday, August 17, 2012
Emergency Evacuation Route
There was this sign hanging on the door in the room where we met with the Dr.'s, it said Emergency Evacuation Route. I kept staring at it as the Dr was talking..thinking how badly I would love to run out of the room right now take that route and disappear. Like a child plugging their ears and going lalalalalalalalalalalala I can't hear you...but I can't do that. I have to sit in the chair again, look into the face again, listen to how sorry they are to have to deliver such news. Looking over at Ben and thinking..here we are again, but we are stronger this time...more resilient...you didn't just deliver our boys a death sentence..you delivered a challenge. Challenge Accepted!
I can still vividly remember the face of the Radiologist that told us Luke had cancer..I have not seen him since, but if I did I would know him. Some images have a way of embedding themselves..faces..an emergency evacuation sign...you just remember where you were and what you were doing when you hear devastating news. The news that followed the twins diagnosis might have been equally disturbing. They are looking for a link for this gene that we carry to the cause of Luke's cancer and the fact that Ben and I are also at a higher risk for getting cancer ourselves. It's time to get screened..colon and breast. It is also time to make sure Ben and I are as healthy as we can be, so we can care for the boys. It's time to get back to training and eating clean. We will do it for our boys.
Today I am focusing on today..everyday I am going to make it the best day. Looking out too far is scary...I get scared and unsure if I am enough, I am not made of steel, I cry..sob in fact..but I BELIEVE and that is enough for today. Tomorrow I will wake up and be enough for that day...every day is a gift from God and we will make it the best.
I can still vividly remember the face of the Radiologist that told us Luke had cancer..I have not seen him since, but if I did I would know him. Some images have a way of embedding themselves..faces..an emergency evacuation sign...you just remember where you were and what you were doing when you hear devastating news. The news that followed the twins diagnosis might have been equally disturbing. They are looking for a link for this gene that we carry to the cause of Luke's cancer and the fact that Ben and I are also at a higher risk for getting cancer ourselves. It's time to get screened..colon and breast. It is also time to make sure Ben and I are as healthy as we can be, so we can care for the boys. It's time to get back to training and eating clean. We will do it for our boys.
Today I am focusing on today..everyday I am going to make it the best day. Looking out too far is scary...I get scared and unsure if I am enough, I am not made of steel, I cry..sob in fact..but I BELIEVE and that is enough for today. Tomorrow I will wake up and be enough for that day...every day is a gift from God and we will make it the best.
Wednesday, August 15, 2012
Another Storm Must Pass
Ataxia-Telangiectasia..sounds a bit like speaking in tongues, but it's our new battle and we will fight it til the end. As many of you know Joshua and Jacob have had "low muscle tone" since they started walking. They have had numerous exams by neurologists, neurosurgeons, muscle specialists, pediatric this and that...you name it we have probably seen it. Recently we have been seeing a Genetic team at Children's National. This information has just recently come about and we are still trying to comprehend it. AT is a very serious and complex disease. I'm just going to give you the scientific data as it was given to us. It's a gene mutation. Ben and I are both carriers (which is bizarre) of the mutated gene. It is a neurodegenerative disease affecting the immune system and predisposing kids to leukemia and lymphoma. The Dr. said that by the age of 10 they will be in wheelchairs, they will lose ability to communicate and basically be intelligent minds trapped in a body that cannot function. 1/3 will get leukemia or lymphoma, 1/3 will get chronic lung disease. There is no cure and there is no treatment, they will likely die by the time they reach their 20's.
Now let me tell you the Fernando prognosis...we believe in God...we believe in MIRACLES..we have one living in our home..if you need to see to believe feel free to stop by and ask to see Luke Fernando, but not after 7pm as that is his bed time! We will not be controlled by fear of death or disease! God is able to do EXCEEDINGLY and ABUNDANTLY above all we can ask or even think...WOW that is AMAZING!!!! We worshiped our way through Luke's cancer and we are going to worship our way along this road...One day at a time.
Now let me tell you the Fernando prognosis...we believe in God...we believe in MIRACLES..we have one living in our home..if you need to see to believe feel free to stop by and ask to see Luke Fernando, but not after 7pm as that is his bed time! We will not be controlled by fear of death or disease! God is able to do EXCEEDINGLY and ABUNDANTLY above all we can ask or even think...WOW that is AMAZING!!!! We worshiped our way through Luke's cancer and we are going to worship our way along this road...One day at a time.
Wednesday, September 9, 2009
End of Summer Update
After a month of no update...I have much to say. My computer crashed and had to be sent back to HP for repair...so I have a valid excuse. The boys have been enjoying the summer. I never updated after Lukey's alarming ride to Georgetown in an ambulance and week long stay which included removing the central line from his chest. He had an E-coli infection in his line and he was a very sick little boy. He recovered quickly, like the champ he is and has thoroughly enjoyed being able to take baths and swim in the pool. Levi and Lukey have spent lots of hours at the pool playing in the water and having a great time. It's been nice for me too, to get out of the house and breathe in some fresh air. Sarah, my sister-in-law, has been my constant companion at the pool. The babies have been growing and growing. They are doing really well. They eat together, sleep together (most of the time), and cry together (not fun). Yes, when one crys..the other starts and then that's when I also want to cry! Two babies crying in tandem with another one hanging on your leg wanting to be held can send you into a tail spin. Luckily we have help. Sarah has been with us for more than two months and will be here one more month. My in-laws were here for a month and now another one of Ben's aunts will be coming from Sri Lanka for 6 months! I would have gone insane if it had not been for all the help. 
The babies are getting so big and they are so cute. A few members of the family...I won't mention any names...still can't tell them apart. I think they look very different, but I have to admit at first glance I have even called them by the wrong name, but I have never put them in the wrong cri
bs...hahaaa you know who you are!! Levi and Lukey have grown very close. Lukey will do whatever Levi is doing. Cardboard boxes from Costco are the best gifts that they could ever get. They quickly become trains, cars, houses, and here a space shuttle. Levi let Lukey be the co-captain on this space shuttle Discoverer. Sometimes they fight...actually a lot. Lukey is a tough little guy, but Levi forgets that he is little sometimes. They are still the best of friends. We took them to the Luray Caverns a few weeks ago. It was a truly amazing place. Levi really enjoyed the listening tour and learned a lot. Ben had to carry Lukey around most of the time which included the 70 stairs up and down with the stroller...no elevators under ground :) We left the babies at home that day and had a picnic lunch outside before Levi and Ben headed into the garden maze. It was nice to get out and away after being inside with baby duty all the time. I think we were all approaching burn out and needed a day out. 
Other than going to the pool and the library, our summer was spent tending to babies. Ben and I did get a lot of Friday night date nights this summer. We went out to eat, saw some chick flicks, and went to the opera. We found that we were so tired when we went out it was difficult to stay awake! Hopefully next summer we will be able to take some more trips, maybe to the beach. I think we will need a travel buddy for a while. 
Lukey is not used to traveling in the car for a long period of time and really dislikes being in his seat that long. He lets everyone know he is upset about it too! It can make for a very long ride. Speaking of Lukey...he had more follow-up scans and hearing tests done. His hearing has stayed the same...thank God...his CT scan came back clear...thank GOD...and his blood tests all looked good. The only thing that is still needing some attention is his kidneys. He had another GFR scan and the result was even lower than the last ones. It is still in the normal range, but trending down. It means his kidney function is still not back to normal...due to the chemo and the Prograf he takes twice a day. He still has the ng tube as well. Next Monday we go to Georgetown for his appt and we will see what they think about it. Meanwhile....Levi started school!! His first day of Kindergarten was Tuesday. We walked him to the bus stop in the morning, which is a block down from the house. He gets dropped off at our driveway!! So nice...I hear the bus coming and I step out the door to get him.
bs...hahaaa you know who you are!! Levi and Lukey have grown very close. Lukey will do whatever Levi is doing. Cardboard boxes from Costco are the best gifts that they could ever get. They quickly become trains, cars, houses, and here a space shuttle. Levi let Lukey be the co-captain on this space shuttle Discoverer. Sometimes they fight...actually a lot. Lukey is a tough little guy, but Levi forgets that he is little sometimes. They are still the best of friends. We took them to the Luray Caverns a few weeks ago. It was a truly amazing place. Levi really enjoyed the listening tour and learned a lot. Ben had to carry Lukey around most of the time which included the 70 stairs up and down with the stroller...no elevators under ground :) We left the babies at home that day and had a picnic lunch outside before Levi and Ben headed into the garden maze. It was nice to get out and away after being inside with baby duty all the time. I think we were all approaching burn out and needed a day out. 
Other than going to the pool and the library, our summer was spent tending to babies. Ben and I did get a lot of Friday night date nights this summer. We went out to eat, saw some chick flicks, and went to the opera. We found that we were so tired when we went out it was difficult to stay awake! Hopefully next summer we will be able to take some more trips, maybe to the beach. I think we will need a travel buddy for a while. 
Lukey is not used to traveling in the car for a long period of time and really dislikes being in his seat that long. He lets everyone know he is upset about it too! It can make for a very long ride. Speaking of Lukey...he had more follow-up scans and hearing tests done. His hearing has stayed the same...thank God...his CT scan came back clear...thank GOD...and his blood tests all looked good. The only thing that is still needing some attention is his kidneys. He had another GFR scan and the result was even lower than the last ones. It is still in the normal range, but trending down. It means his kidney function is still not back to normal...due to the chemo and the Prograf he takes twice a day. He still has the ng tube as well. Next Monday we go to Georgetown for his appt and we will see what they think about it. Meanwhile....Levi started school!! His first day of Kindergarten was Tuesday. We walked him to the bus stop in the morning, which is a block down from the house. He gets dropped off at our driveway!! So nice...I hear the bus coming and I step out the door to get him. 
Walking to the bus stop with mommy, daddy, and Lukey
Waiting for the bus
Getting off the bus at home!
Levi and Jacob
It was so sad to see my little guy get on the bus by himself and leave me standing there on the corner watching him go. I just pray a covering over him. It seems just yesterday I was having sleepless nights with him. I have three more to send off to school one day...sigh...
Last, but not least we are doing a walk in DC for CureSearch, an organization for pediatric cancer research. We have formed a team called "More Than Conquerors". I will be posting a link on this blog and again on my Facebook. If you want to join our team, you can do so on the site or join by doing a virtual walk. Any money raised is going for helping all the children like Lukey. I'll post more info in the next few days. Now my hands are tired and Levi is hounding me to use my computer...I can't take it anymore :) Thanks for sticking with me during my times of no updates. Happy Autumn to all!!
Wednesday, August 5, 2009
A year ago today - when our world was turned upside down!
A year ago today Lukey had a routine physical and subsequently diagnosed Hepatoblastoma. Please see below the post from last year...
Sunday, August 10, 2008
Update on Luke
As most of you know, last Tuesday I took Luke to his 6 month checkup. While getting his routine checkup, his pediatrician noticed a mass on his right side. We were immediately sent to the hospital to get some xrays and an ultrasound. I was concerned, but at the time we thought it might be his bowels or something swollen. The Radiologist came in the ultrasound room and said something that has changed our lives forever. He told us he thought Luke had a large tumor on his liver. We were then sent to Inova Fairfax Hospital. After a battery of tests and scans we received the news that Luke has a form of liver cancer called Hepatoblastoma. On Thursday he had a biopsy and a central line placed in his chest for chemotherapy. He has been having some complications due to the surgery, but is a strong little boy. We did find out that the cancer has not spread to any other tissues or the bones, it is only in the liver and we THANK GOD for that! Last night he started his first session of chemotherapy. It went well and we are believing that God will spare him from side effects. Tomorrow he receives two more chemotherapy drugs. This will go on for the next 12-16 weeks. We are praying that God reduces the tumor sooner than that. Ben and I can feel the strength of your prayers. Please continue to pray for Luke and also include Levi in your prayers, he has been without Mom and Dad and is not sure what is going on. We are just trying to go one day at a time. Thinking ahead too much is overwhelming. Please pray for strength for the day. Luke is in Gods hands, which are the best hands to be in. Things to pray for...Healing in Luke's body, wisdom to make the right decisions for the Dr.'s and nurses taking care of Luke, strength for our family, reduced time on chemotherapy, freedom from side effects of chemotherapy, comfort and strength for Levi and Ben and I. We are praising God through this storm and know we will come out of it stronger.
Sunday, August 10, 2008
Update on Luke
As most of you know, last Tuesday I took Luke to his 6 month checkup. While getting his routine checkup, his pediatrician noticed a mass on his right side. We were immediately sent to the hospital to get some xrays and an ultrasound. I was concerned, but at the time we thought it might be his bowels or something swollen. The Radiologist came in the ultrasound room and said something that has changed our lives forever. He told us he thought Luke had a large tumor on his liver. We were then sent to Inova Fairfax Hospital. After a battery of tests and scans we received the news that Luke has a form of liver cancer called Hepatoblastoma. On Thursday he had a biopsy and a central line placed in his chest for chemotherapy. He has been having some complications due to the surgery, but is a strong little boy. We did find out that the cancer has not spread to any other tissues or the bones, it is only in the liver and we THANK GOD for that! Last night he started his first session of chemotherapy. It went well and we are believing that God will spare him from side effects. Tomorrow he receives two more chemotherapy drugs. This will go on for the next 12-16 weeks. We are praying that God reduces the tumor sooner than that. Ben and I can feel the strength of your prayers. Please continue to pray for Luke and also include Levi in your prayers, he has been without Mom and Dad and is not sure what is going on. We are just trying to go one day at a time. Thinking ahead too much is overwhelming. Please pray for strength for the day. Luke is in Gods hands, which are the best hands to be in. Things to pray for...Healing in Luke's body, wisdom to make the right decisions for the Dr.'s and nurses taking care of Luke, strength for our family, reduced time on chemotherapy, freedom from side effects of chemotherapy, comfort and strength for Levi and Ben and I. We are praising God through this storm and know we will come out of it stronger.
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