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!!
                                                  Luke in the hospital after diagnosis
                                                                  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!

Wednesday, August 22, 2012

A New School Year!

Well, it's about that time again. To make it a little more difficult this year, they decided to do away with preschool at Belmont Station and move the twins to Newton Lee. Now I can get Luke on the bus at 6:55 am to Frances Hazel Reid, then Levi at 7:24 to Belmont Station and then drive the twins to Newton Lee by 7:50. Should be exciting!! I have been in the process of rearranging the 2nd floor and thought I would be finished by now..I'm not. I moved the office to my room (condensed version), moved Levi into the office (needed his own space, Lukey free), moving Lukey into the twins room, and moving the twins into the big room in big boy beds. I have to still make the transition for the twins and pad the foot and headboards on their beds. They make me very nervous with all their bouncing around. They have really bad balance and coordination, so when you put that jumping on a bed, you usually end up with a split lip or goose egg:( I was thankful that Aunty Sarah got to come for a visit this summer and spend some time with the boys. We were able to sneak away to the Outer Banks and relax...relax? HAHAHAHAHAAHA...is that even possible?

We made some fabulous memories with our boys and that's what is important. We went to the NC Aquarium and they just loved it. I made a trip out to California with Levi, which landed us in Minnesota and 3 days on a Greyhound back to Virginia, but that is it's own post. I cherish these days, even though they drive me crazy some days..I am sad when they are all gone at school...until they get home and then I'm like..what was I sad about again? I LOVE MY BOYS!!!! They are gifts to me, God saw something in Ben and I, and trusted them in our care. I will be a little weepy on the first day of school, but I think a lot of moms are :) It's part of what makes us moms.

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.

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.