Must Be Nice

                         
                  Must Be Nice

 I have heard this phrase many times and have said it even more. Someone tells me their kids sleep until 8 or 9 in the morning or take 2 hour naps during the day or they just won free pizza for a year..."Must be Nice". Yes, I've said it, and now I'm sorry I ever did because it just sounds rotten. 

Several months ago a new neighbor was walking her dog when the bus picked my boys up for school. After the bus pulled away, she asked if it went to their school. I said yes, it goes to "said school". She was amazed that the buses pick students up at their driveways, so I explained to her that it was a "special needs" bus and it picks students up at their houses. And then she said it.."Wow, must be nice." Now, I'm sure she wasn't trying to sound mean and snarky but...wellllll...she did! The nice prayed through person in me thought, yes it is nice. It is so nice, you have no idea. I love that I live in a county that can provide such wonderful resources to families with children who need it. I love that I can see my boys off right at the house and that when the weather is bad we can wait inside until the bus comes. Then there's that other person in me who wants to scream. I try to keep her subdued...only by grace do I manage this. I want to scream...YES! It must be nice that your kids can walk to a bus stop, can climb the steps on their own, can sit in a seat without having to be strapped in because they have little upper body control! Heck, they could probably walk to school if they wanted or ride a bike..MUST BE NICE!! See that, what I just did there...rotten.

So I never said anything, I smiled as I often do and carried on. Until...the most Amazing and Fabulous news came that the boys were getting their Make-A-Wish!!! I may have shared my excitement with the wrong people...you know how the Bible says not to cast your pearls before the swine..well I guess I just never expected that I knew any swine. No, I never expected to hear "Must Be Nice" from, well from anyone in regards to a MAW. It makes my throat tighten to think about it. 

It is nice! It's absolutely a gift that these programs exist. It is so fabulous that they plan everything out for you down to the last detail. They make it all about the child. These boys will feel like absolute Rock Stars! For a brief time they will not be those boys with A-T. A-T is never invited on these trips. We will make memories that we can look back on, we will laugh til it hurts, we will indulge in tons of ice cream, we will take thousands of pictures and videos, we will not think about the future, we will not think about blood draws, therapies, and Dr. appts. So when you say it must be nice, I say yes it absolutely is and I am so thankful for it! But, it didn't come across that way. It came across rotten.

You see, the reason my boys get a Make-A-Wish, and they get it so quickly is because they are terminal.

That probably didn't register with you, and that's okay. I smiled and carried on. You will have years and years of family vacations and memories as you watch your children grow older. You will attend their sporting events, school graduations and see them off to college. You will be there on their wedding day and be able to hold and love on your grandchildren. You had no idea what you were saying. You have no idea how I wake up everyday and need strength and grace just for this day because the battle is long and lonely. Or how hard we fight for equal opportunities in education. How just going to the dentist is mentally and emotionally draining. How exhausted their little bodies are after a half day of school. How they will never be able to ride a bike. How children stare at them because of the way they move and the helmets they wear. How the intense guilt that rises up can eat away at me, because they were born with A-T, they had no choice. How they are going to suffer because of our bad genetics. How at night I go in and speak over them and cry out to God to do a miracle. How BADLY I wish it would be me instead of them!! And how they are going to die without ever really getting the chance to live. But you didn't know that when you said that one little phrase, you just had no idea. 

But then, you may never experience the grace of God like I experience everyday. The strength that he gives when I need it. The words that he speaks when I'm confused and weary. Forgiveness and mercy when I'm lacking. You may never learn to trust God in the capacity that I have. You might falter in the storm, rather than rise up. You might not understand the sovereignty of God. Your first response to adversity might be to try to remove it, mine is to understand that, that is God at work in my life. Because knowing that my boys have a fatal disease and a life expectancy of teen to twenties did not break me, but brought me closer to God than ever before. My focus cannot be on the trial itself, but the purpose of the trial and what God is working within me. He renews me day by day and I only get through each day by his grace. Because now I understand what Job meant when he said, "though he slay me, yet will I trust him". God has given my family an Awesome responsibility, because he trusts us. I guess the Bible says it best...

1 Peter 4: 12-13

Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad-for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world.

And that IS nice.


 

Pot or Not

WHAT??? This image strikes fear in the heart of parents everywhere. This is a topic most people would rather not discuss. Marijuana is a drug..and it's illegal for crying out loud! Yes and yes, but what if it stopped your child's severe seizures and gave them a chance to have a better quality of life? What if it helped your child's neurological disorder? Recently CNN ran an article about the use of cannabis to treat a child's severe seizures. Read it Here. Now you may already have a vision in your head of a small child sitting in their booster seat smoking a joint. Not so, the oil is used from the cannabis plant, which is high in CBD or cannabidiol, which has medicinal properties but no psychoactivity. It is also low in THC, tetrahydrocannabinol, the compound in marijuana that is psychoactive. It is typically added to food and absorbed into the bloodstream that way.
      After each of my three cesarean sections I was given a drug called Oxycodone, for the pain. It impaired my ability to function, it made me feel really strange. It was also formulated in a pharmaceutical  laboratory with who knows what else in it and multiple side effects. It is also a drug that can be abused like any other drug that gets into the hands of humans. I fail to see how it is any safer than say...cannabis. I'm not pro or con on this issue...I'm just trying to gather more information because some of the results coming from the research and use of cannabis oil are very interesting to me.
     While at the AT (ataxia-telangiectasia) clinic at Johns Hopkins, the neurologist told us a story. He told us of a mom who went to pick up her son at a friends house. Her son has AT. Once he was loaded in the car, she began to ask him about his day and what he did and etc etc... Well, much to the surprise of the mother her son was answering in clear, concise sentences. She was so surprised and shocked she knew something had to have happened to make such a drastic difference. Come to find out, the young man had been smoking marijuana with his friends. The neurologist indicated that it effects a certain area of the brain that could cause speech to become clearer and to cease tremors and involuntary movements. This is very intriguing because my two sons have AT. If at some time down the road, research shows that the use of cannabis oil will drastically improve the quality of life for someone with AT, would I give it to my children? Hmmmm... My 5 year old had cancer..he's been pumped up with drugs that are meant to practically kill you..he was on 13 different medications when he left the hospital after transplant...he was on medications to treat the side effects of his medications. It just doesn't make sense to me why this is okay, but giving cannabis oil to a child to treat severe seizures is not.
    I'm not claiming to be at all educated about all the details surrounding the controversy of medicinal marijuana use. I grew up in California..I know pot people! I've seen it grown in dorm rooms in college, smoked openly in parks and beaches. I had pot smoking hippie parents. I may have even tried it myself...ha no...like Clinton, I never inhaled! I think more research needs to be done, but I'm not close minded on the topic. I think it will be very interesting to see how it all plays out. I'm curious about your opinion, what do you think?

The month of "GOLD"

I will never get tired of saying it, regardless if you get tired of hearing it. September is pediatric cancer awareness month. It's the one month out of the entire year where it might be possible to raise some awareness and raise some money to help fund research for pediatric cancers. Cancers..plural. One month...30 days. Every day, 36 children are diagnosed with cancer. Cancer affects all ethnic, gender, and socio-economic groups and more than 40,000 children undergo treatment for cancer each year. (Curesearch)
Pediatric cancer is so seriously underfunded and unnoticed it is positively shameful!!! These are children, and should be in the forefront of cancer research. But yes, I have to admit, I never gave it much thought myself until it took over our lives. When I became a mom I worried over things like colic and constipation. These were big concerns...breast or bottle...binky or no binky...co sleep or crib...then cancer hit and it became, Children's or Georgetown...Cisplatin or Doxirubicen...transplant or death. I'm not going to load this up with research funding statistics because it it HORRIFYING!!!!
American Childhood Cancer Organization It's true...kids can't fight cancer alone. The families can't do it alone either. So much more needs to be done. So please...let's not forget about it October through August...would you if it was your child? Go MOM On Cancer

Courageous, Overcomer, More Than a Conqueror!!

Back to School

The time has come for shamelessly posting picture after picture of children in their new "First Day of School" duds! I've done it before, and I will do it again.

My 4 handsome little men. Levi started 4th grade! Crazy, where has the time gone? Luke started Kindergarten...Yikes! Luke goes to a full day of school, which is just what he needed. He goes to his DHH teacher in the morning, then after lunch he goes to afternoon Kindergarten. Joshua and Jacob have started their last year of Pre-K. I can't even begin to tell you how I feel about this. Here they are..the Fab 4. So far, Levi is loving school, however; it's only day 3. Luke won't tell me a thing about what he does at school, who are his teachers, or any detail at all about anything. He did open up that he wanted to be friends with a girl and she said, I don't want to be your friend, I want to be friends with someone else. This was especially devastating for him. Ahhh girls...they start breaking hearts so early. Josh and Jake did well their first day. Josh went straight to the Lego's and played and Jake only cried without clinging to me. Not bad, if I do say so myself. Today is their second day at school and both went into class and straight to the table, no fuss! I was so excited that I forgot to let her know they are wearing underwear, but I guess she will find out one way or another.

The house is so quiet, I can hear my thoughts having thoughts. Time to wheedle down the stack of to do's on my desk....after a steaming hot cup of Decaf Earl Grey with a hint of sugar and a drizzle of cream. This time I will not forget where I left my cup, and will not have to re-heat it or drink it iced :)

Beach Bound

Well we are headed to the beach. What's that? Why yes, it is the week before school, t-ball and golf starts. Well ya know, only a man would plan a vacation during one of the busiest weeks of my summer! I am determined to block out all the open houses and parent meetings I will be missing, and just enjoy my time lounging on the beach. Wait! Did I say lounging on the beach? Hahaa NO..I have been reading a novel where people actually get to do that, and I must have still been in the fantasy. I will be chasing 4 boys around, making sure two don't get sucked out into the ocean and cleaning sand out of places I didn't know existed, several times a day. If I can avoid a sunburn, I am doing good!

Ahhhh...the beach! My idea of a grand vacation is quite different. I'm more of a cabin in the woods kinda girl. If it's snowed in, that's even better. A fire, comfort food, and a good book are all very appealing to me. A very close friend of mine had recently introduced me to books by Grace Livingston Hill. I was instantly addicted! I have read all the ones that are free on Ibook and Kindle, and am now in withdrawls. If you have any kind of a romantic notion in you, you will love them. They are of course Christian as well, so they are clean :) I'm glad I got all that reading out of the way before heading to the beach..this way I'm not disappointed. The boys are all so excited to go to the beach that I can't help but be excited as well. It's about making memories together, and sharing moments. Besides, I like to go cold turkey on the first day of school anyways! It gives us all a little JOLT!

A Great Honor

I'm very excited about Pediatric Cancer Awareness month that is approaching. The month of September is "wear your gold" month! I am so honored to have been asked to speak at the Joan Hisaoka Gala being held in Washington, DC next month. I feel very blessed to be able to represent the Life With Cancer center and help raise funds for all the programs they offer.  I am going to post the video that they will be showing. It's a video we made last Fall, and I choke up every time I watch it. It makes me think..hmmm..I never really knew all what Levi was feeling and going through when Lukey was sick.  Afterwards, I get to share a little of our journey through cancer.

http://bcove.me/fxcouv1e

September is a good time to make donations to organizations raising money for Pediatric Cancer. CureSearch, American Childhood Cancer Organization, and Candlelighters are all great organizations. If you have several hundred laying about and you're not sure what to do with it, well buy some tickets to the upcoming gala and raise some funds for all the great programs they offer.
Joan Hisaoka Gala 
The Life With Cancer center did so many wonderful things for my family. Levi had a place to go where he could relate to other kids and what they were going through. He called it "his other school". I'm very thankful to them for that, and for making a huge impact on him. According to him, they always had Awesome pizza!

A New Season

This post is dedicated to Missy! My faithful reader and friend who keeps reminding me to post! Well it has been awhile since I have posted. I think I have been trying to maintain some illusion of normalcy..although normal is completely overrated. What is normal anyways? I think it's different for everyone. Our normal is constantly changing anyways. School is getting ready to start again! Wow..I am so excited about that. This has been a great summer with lots of memories made, but the noise and bickering and boys tussling in the other room will not be missed. Levi is entering 4th grade, which is crazy to me! When did he get that old? Luke is starting Kindergarten, and the twins will start their last year of preschool. Once all those buses have pulled away carrying my precious cargo, I will be sad and think, well all that noise wasn't so bad. Fear not..it will start up again in the afternoon, so I will sit and enjoy my cup of decaf Earl Grey without having to reheat it 2-3 times.

I'll just update you on the status of the boys health. We had quite a lot of appointments this summer, trying to get things done before school starts. Luke had his complete blood workup done and an ultrasound of the liver. Everything looks great!! Thank you Jesus! The twins had a protein assay done that we have not gotten the results back yet and a full blood workup from an immunoligical standpoint. Their immune systems are holding. They have a low IgA..but it is still about the same as last year. They are doing very well at writing despite what I was told last year, they can almost write their names entirely by themselves! Thank you Jesus! We did find out that Luke is not a carrier of the gene, but Levi is. Our God is a healer though, that I know for a FACT!!

I am finally bringing a dream into reality. I have had a project I have been working on for the last year. Well, with a great partnership with my friend Missy, I am looking to have the first of a series published. I can't wait to share with you what it is all about. We have several more in the queue, that are works in progress. The idea first came to me when I was on a tour of the Loudoun County Landfill with Levi's cub scout den. I know you are chomping at the bit to find out..but you will have to wait :) Missy is extraordinarily talented and is bringing it all to life! I have been praying God's favor on this project and I believe it will be Awesome!! More news on this..I promise!

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!!

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!

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.

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.

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.

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 cribs...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!!

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.

Lukey says Farewell to his favorite Dr.

Dr. Weil, Benjamin (her son), and Lukey

A very fond farewell to Dr. Weil. Lukey's oncologist is leaving Children's and heading to NIH. We are going to miss her. On August 5, 2008, we were told Lukey had a tumor in his liver. Dr. Weil was the Dr that met us when we first showed up at the hospital in a state of shock and fear. I am totally choking up as I write this...it is hard going back and remembering. She has been Lukey's primary oncologist since day 1. Dr. Weil always made herself available to answer our many thousands of questions no matter the time or day. Though she is leaving Children's...she will never be able to get away from us :) We know her cell phone number...hahahaa. We are definitely going to miss her, but intend on keeping her updated on Lukey's progress. We are just waiting for the AFP to come back to see if the line can be removed. I hope everyone is having a wonderful summer so far...I hope to get out to enjoy it somewhat this year.

Dr. Weil and Lukey

Lukey walking!!! He is so proud of himself

Lukey loves the babies...loves to poke them in the eyes.

Who's that? He looks like me!

Introducing Joshua Liam and Jacob Lael

Our boys were born May 29th at 11:10pm and 11:11pm. Joshua was the bigger of the two at 6 lbs 1oz and Jacob weighed 5lbs 9 oz.

Proud Daddy!!

Exhausted Mommy!

Joshua Liam Fernando

Jacob Lael Fernando

Heading Home

Big brother Levi

My two angels

Nana and her new grandsons

Having twins makes you remember the days of having one newborn and laughing about how hard we thought it was...hahaha. All they do is eat and cry. Some days I don't have time to even eat. I have started drinking caffeine again after almost two years of no coffee and such. It is necessary for survival. I can't believe the amount of laundry we do around here. There is no way I would be able to keep up right now without Mercy here. She has been a huge help. I took the twins to the Dr. on Monday...by myself...yeah I totally ROCK!! The double stroller is like pushing a stretch limo...you really have no idea of it's length until you try getting into elevators and through doors. The boys are growing well...Jacob has actually passed Joshua in weight, which is funny because he was the smaller of the two.

I went to the Dr. yesterday for a incision check and follow up. He told the path lab results came back on the placenta and the boys are actually identical twins. Initially they said fraternal. I don't know who to believe...I guess we'll see. They do look identical now and they both have B+ blood types which I thought was interesting. They do have extreme cuteness in common. We are trying very hard to just enjoy these days...they go by so fast and these are our last ones. We might complain now about losing sleep now...what about when they are teenagers...we will long for the days when they just eat and sleep and poop.

Lukey will have another blood test this week and his AFP results will determine the removal of the central line. They have taken him off the steroids now...YAY!! He is also off the prevacid...two more meds down... and about four or five more to go. The big news this week is...Lukey has started walking!!!! He just laughs the whole time too...he tries to go really fast...like he wants to run. He starts speech therapy next week and will have a lot of follow up scan in the next couple of months. We are still trying to get him to drink more. I am supposed to put his new ng tube in myself...they gave me a stethoscope at Georgetown and showed me what to listen for when testing the tube....Lord have mercy...I can't wait to be done with all this. I'll try to get some pictures of Lukey walking to post.

Levi had his 5th birthday and graduated from Pre-K all on the same day!! It seems like not long ago I was feeding and rocking him. We are truly blessed with all these boys.