Tuesday, December 30, 2008

Home Sweet Home!

After nearly a month in the hospital, we are finally all home and together. It was so good to get home, but I must admit it is also a little scary to leave the constant care of nurses and Dr.'s. Levi was so excited that Lukey was home, he tore up the stairs and into his room to see him. Lukey's face just lit up with a huge smile. They have a very special relationship and Ben and I don't realize the toll it takes on them too. Levi has a very hard time when Lukey is in the hospital.
Upon our arrival back at home, we were faced with new challenges. Like getting the feeding pump working properly. I almost lost my mind. I felt serious rage towards that feeding pump. I left my directions for making a huge batch of Ele-care formula at the hospital, so I had to go by memory with the measurements. It was definitely a first night back. A little stressful, but so nice. Lukey is on so many medications. It starts at 6am and the last one of the day is given at 11pm. It's something we just have to get used to. With my brain only functioning at 70%, I just have to follow my med schedule. As time goes by, he should go down to 1-3 meds. He will always take them though. The Prograf is what they call his Lifeline. It is what he will take for the rest of his life to avoid liver rejection.
We will have to go into the clinic at Georgetown 2-3 times a week for a few months. We are also getting ready for Lukey to start back on the chemo. By the beginning of next week I'm thinking. We will find out tomorrow. We are almost there. Two more rounds of chemo and my little man will be done with it.
All we need now is to get Lukey to eat on his own. He is still throwing up and not wanting to take anything by mouth. They moved his feeding tube down into his small intestine, so he doesn't throw up formula anymore, just phlegm. He is so congested in his head that he swallows everything, then throws it up. He is also on breathing treatments to help with the congestion. I really want him to eat. The feeding pump is such a major hassle. Please pray Lukey starts eating again. Otherwise, he is doing great. His liver function is really good. We are just so blessed and thankful that saying thank you seems like not enough anymore. We could not get through this without you. You all have done something that has made this time easier. We are all incredibly exhausted and hoping to catch up on some rest before starting chemo. I have just one more med to give and I need to start his new feeds back up, then it is night night for me. I sure hope Lukey sleeps tonight. He took a very long nap today and I was able to do all the laundry and clean up. Tonight, I just want to sleep.
A quick update on my pregnancy. I am 16 weeks along and I heard the baby's heartbeat today and saw (her) moving all around. (She) is a wild one. I don't know that it is a girl. But I Believe!!
Happy and Blessed New Year to you all. Thank you for keeping us in your prayers. We love and appreciate every one of you.

Friday, December 26, 2008

Fernando Family Christmas

Our Christmas Miracle!

The Fernando Family celebrated the birth of Christ at Georgetown Hospital this year. We actually had a very nice Christmas. We had our little tree and most importantly we were all together. Ben did the presents and stockings in the morning with Levi and then came to the hospital in time for Santa's arrival.

Like Ben said in his post, we had Subway for lunch. Very festive!! The good thing is we can't say we over ate this Christmas. For dinner, our wonderful friends brought us food and sparking cider and yummy chocolate cake. We had a great day. Santa brought lots of gifts and then several others stopped by with presents. Levi and Lukey got more presents this year than we know what to do with. So many generous hearts reaching out to the children and families in the hospital..it's wonderful.
The boys in uniform came and delivered gifts.

Later in the evening though the day got interesting. I was looking at Bens sweatshirt wondering what was on it. It was a big stain looking thing. Then I looked down at Lukey and the whole front of his pj's were bloody. Well, you can imagine my reaction. We thought that the clamp on his line had been rubbing on his incision and it came open, but once they got it cleaned up they noticed that there was still blood coming from somewhere. His central line had a hole in it and his blood was dripping out. The nurses paged surgery and one of the Dr's came up. They were able to repair the line by cutting off the bad part and gluing on a whole new bottom. We were very thankful that it did not need to be removed and a new one put in. But since you can't use the line for 6 hours until the glue dries they were going to have to start another IV on him. It was very late by this time and I headed home with Levi. I talked to Ben on the phone and he said they were unable to start an IV on either foot. My poor baby...going through unnecessary pain. They gave up and decided to wait until the glue dried. Lukey slept pretty well last night which means Ben got some sleep. I'm getting ready to head to the hospital with Levi, so I'll update again in a day or so. God Bless you all, I hope your Christmas was wonderful.

Thursday, December 25, 2008

On this Christmas -Love, Joy and Everlasting Peace

What a historical day...For unto us a Child is born, unto us a Son is given... As I meditate on his word this morning, I couldn't stop noticing the impact Christ made on earth and more specifically, in my life. The words that came to my mind are... redeemed, favored, forgiven, peace, and joy--that is not of this world. When you're going through a valley of shadow of death you learn a lot about God --His peace, healing, strength, resurrection power, mercy, etc., and at the same time how weak and inadequate I am -- as someone said "glorified dirt!" Jesus came to the earth for a purpose and although he knew the suffering and sacrifice that was required, He served with joy. What a humble beginning -- like Levi says "smelly stable with cows and sheep :)" but how glorious was His redemption. It is his love that changed the world, and he paid sin with His life, so I can have life and life more abundantly. His agape love can transform lives and it has certainly done that in my life. Although my love is still failing, His grace is sufficient. The challenge that my family and I will accept on this Christmas day is not only walk closer with Him but also to let His light shine upon someone else.

We're at the hospital but I thought we had one of the memorable days. Since we didn't get to go home, we tried to bring home to the hospital! Jen did a good job of organizing everything. We didn't let our journey get us down because to be honest, we are in a better situation than lot of parents on this floor. We had many folks that were treated yester-years come by with presents for Lukey and Levi, and it was nice to see them doing well. We tried to order out but most of the restaurants in Georgetown were closed so we had our Christmas lunch by courtesy of Subway "eat fresh!" Our Sri Lankan friends, Trevor and Dhammika, are bringing dinner for us, thanks guys.

We are grateful to all of you for your continued prayers and support. We are the most blessed people on earth to have the love and support of our team, who have rallied around us in the last 5 months. Like I said before, when you're going through hell, the heaven is worth the journey with people like you.

We wish you and yours a very Merry Christmas -- let Lord's favor be with you and may you be granted love, peace of mind, and joy.

With love and best wishes.

John the Baptist
And this was his message: "After me will come one more powerful than I, the thongs of whose sandals I am not worthy to stoop down and untie. I baptize you with water, but he will baptize you with the Holy Spirit." (Mark 1:7)

Isiah the Prophet
"For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace." (Isiah 9:6)

Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins. So all this was done that it might be fulfilled which was spoken by the Lord through the prophet, saying:"The virgin will be with child and will give birth to a son, and they will call him Immanuel"—which means, "God with us." (Mathew 1:21-23)

The angel went to her and said, "Greetings, you who are highly favored! The Lord is with you." Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end. "How will this be," Mary asked the angel, "since I am a virgin?" The angel answered, "The Holy Spirit will come upon you, and the power of the Most High will overshadow you. So the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For nothing is impossible with God." "I am the Lord's servant," Mary answered. "May it be to me as you have said." Then the angel left her. (Luke 1:28-38)

Mary's Song
And Mary said: "My soul glorifies the Lord and my spirit rejoices in God my Savior, for he has been mindful of the humble state of his servant. From now on all generations will call me blessed, for the Mighty One has done great things for me— holy is his name. His mercy extends to those who fear him, from generation to generation. He has performed mighty deeds with his arm; he has scattered those who are proud in their inmost thoughts. He has brought down rulers from their thrones but has lifted up the humble. He has filled the hungry with good things but has sent the rich away empty. He has helped his servant Israel, remembering to be merciful to Abraham and his descendants forever, even as he said to our fathers." (Luke 1:46-55)

Tuesday, December 23, 2008

Luke Update

Well...I'm finally posting something. Tonight I came home and Ben is staying at the hospital. Last night Lukey just would not sleep. We are still in the hospital because Luke can't stop throwing up. We are preparing to be there for Christmas, though we are still holding onto hope that we will get to come home tomorrow. Luke had pulled out his NG tube (feeding tube) so they decided to keep it out and try feeding him. He did really well for a day, then stopped eating altogether. They put the tube back in and he is being fed and getting all his meds through the tube. It's actually so much easier to give him his meds that way, but I would love for him to start taking a bottle. He will go home with the ng tube, so they had to come and teach me how to use the pump and fill it with his formula and what not. On top of that he is now going home on 11 different medicines, all with their own instructions. I am now officially a home health nurse.
Lukey after he pulled out his ng tube. He looks like his old self.

Levi, keeping himself busy at the hospital.
Luke has had so many problems with formula, he is now on a special pre digested, hypoallergenic formula. If anyone would like to donate some breast milk, I'd happily accept. Seriously...I thought about going on Craig's List looking for breast milk. During his stay in the ICU...I just could not produce anymore milk. Maybe due to the pregnancy too. Levi has been coming to the hospital and getting spoiled by the Child Life Specialists. They have a big play room, with all the cool Wii games and activities and crafts. Today he was eating pizza in there and playing Wii, while I was gagging on meatloaf and cleaning up vomit. The hospital really does do a lot for the kids that are in during the holidays. We have had two visits from Santa and one from a family that always donates toys to the kids. On the outside of Lukeys door is a basket where Santa's helpers put a little treat in everyday. We desperately want to be home for Christmas, but will be happy where ever we are. Lukey's bottom teeth are also coming in, which adds to his irritability. His incision is healing nicely and his eyelashes and eye brows have come back. His hair is growing in fast too. He looks way more like Ben now than before. Well I had just 3 hours of sleep last night, so I will post some pics and say goodnight. Thank you everyone for all the cards and cookies and meals and prayers..oh and livers (Uncle Michael). We are so grateful I just can't even express it with words. This has been the most difficult time of our lives. I feel like I have been walking through the valley of the shadow of death...but my comfort is that I know I don't walk it alone. The Lord is with us..and he has put so many people in our lives to walk with us through the valley...all the way to the mountain top. We'll get there!! Nana and Uncle Michael's last visit before flying home
Levi loves his baby brother.
A happy Lukey. I love how they let him wear his own clothes instead of a hospital gown.

Sunday, December 21, 2008

Post Transplant Day 16

We are still at the hospital, as Luke has been experiencing some pain and feeding related complications. These are just a few hiccups but we are so anxious to get home after almost 3 weeks of hospital stay! However, we are pleased with the care we get here at the transplant unit and they are keeping a close tab on Luke's progress. No matter how long it takes, we want our precious man to feel comfortable and without pain. He's the one who endured the surgery and related pain, we were there for the journey! So, he gets what he wants. Please pray with us that Lukey will be home for Christmas -- that will make this Christmas very special to me.

Yesterday Michael flew back home and I was so happy that he was able to be with his family for Christmas. The gift he gave Luke will always be special and his reward will be in heaven. Thanks Michael, Ellen, and Emmy Lou for your love and sacrifice -- we are eternally grateful to you. Thanks to Nana as well for spending time with Levi, and providing excellent care to Michael!

Thank you for stopping by and being so thoughtful in the midst of the busy season. Your prayers for Lukey and for our family is very much appreciated. God Bless!

Friday, December 19, 2008

Bumps on The Road

Luke is recovering well but with some minor set backs. He's running a slight temperature while still battling the liquids in his lungs. The Dr is concerned with Luke catching pneumonia. He wasn't drinking his milk so the ng tube had to go back. Please continue to pray for our little trooper and his new journey.

Jen and I have switched places the last couple of nights. Although it seems night and day compared to ICU, the transplant unit is still not a very comfortable place for my pregnant wife and I hope to take over the night shifts from her, tonight. I was back at work the last couple of days, as our planning and budgeting season is in full flow. Levi spends most of his time with Nana, and it is such a comfort to have her around. Unfortunately, Nana and Michael will be flying back to Reno on Sunday and we're looking for someone to fill in the gaps! Well, God has provided in the last 5 months and for sure, he will make a way. Levi is the ultimate 4-yr old brother for understanding the times and sacrificing, although,unfortunately he has not much choice in this, after all.

Jen didn't have access to a computer for the last couple of days but I know she wanted to update you soon. Thanks for your prayers and support. We appreciate our team and we couldn't have made it this far without God's help and your prayers.


Wednesday, December 17, 2008

Downgraded to "Gold" status

Just a quick update to say that Lukey was downgraded from "ICU" status and was moved to Transplant unit last night. His new status is called "Gold" and I'm trying to figure out why they call "Gold" for staying at the hospital, no matter what status you're in :)

Thank you so much for your prayers. Also, it seems like my greatest Christmas gift "Lukey home for Christmas" is coming true. Please keep him in prayer that he will continue to improve and regain his strength every day. Please pray for Levi as well, as he, like Jen and I, went through all these changes last 4 plus months and needs God's touch.

We will be getting some lessons on our new "normal" life and how to care for Lukey. We thank God for saving Lukey's life and letting us care for our precious boy. He went through a lot already and he keeps inspiring me of the fight. I don't know why he was the stat 1:1M, but I know God strengthened his body to be able to endure the pain. Please keep the children and families that are going through this journey in your thoughts and prayers. It breaks my heart to see children suffer and I think my ministry was confirmed in the last few months.

Thank you very much for your love, thoughtfulness, friendship, time, kindness, sensitiveness, etc etc. We really appreciate you.


Tuesday, December 16, 2008

Some pictures to go with the other update

Well I had planned on giving an update last night, but I fell asleep. My husband picked up the slack for me and gave a wonderful update. I was so excited yesterday that they took Lukey off the ventilator. It was the first time I heard him cry in 12 days...and it was music to my ears. Ben definitely needs a night at home to sleep in his own bed. I hope they move Lukey out of the ICU soon. I hope he can come home for Christmas. I'm going to post some pictures since most of the updating has been done. Today Levi gets to go see his baby brother...and he is soooo excited.

Uncle Michael, my cousin Veronica and her husband Ben all came for a visit.

Lukey still sleeping...he wakes up for short spurts and then goes back to sleep.

Here's one of his wakeful moments...I could not get him to smile though. He just stared at me. The nurse kept putting his blankie on top of his head for some reason. (The nurse from the previous blog entry.)

After they took the tube out he was very agitated. His cry was weak, but beautiful. They had to clean all the tape stuff off his face too...he was just mad.

No tube...and all tuckered out from the whole ordeal. See there's that blankie again. I love that I can finally kiss his kissable cheeks. I'm still waiting to be able to hold him.

Monday, December 15, 2008

Day 10 Post Transplant

Well, Luke's exterbated from the breathing machine. This is a great milestone towards getting downgraded from ICU status but due to the fluid overload he's not out of the woods yet. Please pray that he will do well tonight that he will not have to go back on the ventilator. I'm praying for my greatest Christmas present ever -- Lukey home for Christmas!! And cancer free!!!

Today was rather an off day for me, as I was little agitated with Luke's nurse. She was tossing and turning him this morning and when I saw Luke's tears it just broke my heart and the warrior in me came out! But unfortunately it was just the beginning. She left Luke for hours at a time, unattended. Finally, in the evening, I had a chat with the charge-nurse and made sure that my boy and this nurse cut ties in the future :) You can see that I had logged too many hours at the PICU and need a chill pill!

In one of my previous posts I had mentioned about a child that was put on the life support... well, she's a miracle baby! When her cancer (Neuroblastoma) just about consumed her, the dr at Georgetown had the wisdom to seek help for her on an international drs blog (I think). And a dr in England had seen this and called Georgetown with the drug he used on a patient with a similar cancer in the UK, and when they gave her the drug, she had immediately responded. Timing couldn't have been better, as she was just about to go through a major/risky surgery. Too much providence in this to be called good old "lucky." Tonight she's a miracle child fighting hard to hold on to her life. They have reduced the support by the machine and she's getting better! The parents are praying hard and they were jubilant of the hope they now have. Please say a prayer for this family for strength and healing.

Michael continues to improve at home. He's getting pampered by mum's care! I hope he will get dr's approval to fly home soon to be with his wife, Ellen and little Emmy Lou. We thank God for them and the healthy liver Michael so wonderfully took care of! We were told that Lukey's new liver is functioning almost "normal." It will take a few more days to reach the "normal" status but as the surgeon outlined..."it is beautiful!" Praise God! The journey was rough but it was well worth it and most of all, life saving. Through it all, we give God the glory. We thank Dr. Crowley at Ashburn Pediatrics for discovering the tumor at the 6-month "well" baby visit and giving us the time to fight it. I'm not the one to call this -- "lucky."

Hope your Christmas plans are coming along well. Thank you so much for stopping by to read about our journey. We appreciate and love you very much. Good night!

Sunday, December 14, 2008

Day 9 Post Transplant

Sorry about the delay in this post. We're still in the ICU due to the liquid overload in Luke's body. As you can remember, the day after the transplant surgery, they discovered a blockage in an artery and there was backflow of blood. This prompted the BP to drop and subsequently pumping about 900ml of liquid in a short time to stable the BP. Then they started aggressively removing liquids, which they did but BP started dropping again. Then for the 3rd time, last Friday they saw a BP drop but was quickly gotten under control with about 350cc of liquids, mostly thick Albumin, which helps pulling the water off of tissues into the veins. Since then, things are fairly stable and we are praying that Luke’s body starts accepting the fluid shifts and starts excreting liquids. So, there is no set goal by the drs., but they are letting Luke handle the liquids in his own time but giving him Lasix to gently push the liquids off through urine.

It’s been an experience spending nights at ICU. The bells and alarms through the night, and army of nurses running from one room to another addressing the emergencies. It could be overwhelming experience, but my prayer has been “God, please let your peace be in me.” However, I’ve had my share of anxious moments with all the alarms and frequent reports. I found out how weak and desperate I could be. As a parent, it is tough to see your baby go through these times and I must admit I came close to asking “my God, my God, why have you forsaken me.” But my walk with God has taught me that times like this is where God shows up – exhausted and almost at the end of our human road! It amazes me how he shows up. In the last 4 months, Jen and I have leaned on Him more than anytime before in our marriage and He has never forsaken us, He has always come through – not in our time but His own!

Talking about the last 9 days in the ICU, I’ve participated in the daily drs rounds and have become somewhat proficient at how they handle Luke’s care here. I’ve asked so many questions and watched the nurses care for Luke. It is very scary when you see even the best nurses make mistakes. I remember reading a blog from a fellow parent, who went through a similar experience to what we are going through, and what she said about care at the hospital…”you are your son’s only fulltime nurse.” I’ve come to experience the profound truth in that statement and why I need to pray for the medical staff. All my questions may seem like I’m too curious or that I’m undermining their expertise, but Luke’s my 24/7 and only patient and most of all God has placed me to care for him while I’m on earth, so I’ll do what I have to do.

This is where I take over. (Jen) I just relieved Ben at the hospital and he didn’t quite get to finish what he was saying, but I think I can finish it for him. God is so faithful and has really taught us to trust in him alone. Ben is so awesome, he has stayed at the hospital every night for the last 9 days, and he plans to stay every night until he is out of the ICU. It has given me some time with Levi at home in the evenings and a proper bed to sleep in. We are hoping to be out of the ICU by Tuesday. Please pray the extra fluids leave his body, especially the lung area. I’ll try to do better at keeping you posted.

Friday, December 12, 2008

BP and ECG

Luke's BP and heart rate are on the lower side tonight. I've been praying for God's touch. I read the word and believed that God has already touched him ..."and the people all tried to touch him, because power was coming from him and healing them all." Luke 6:19. It is just passed midnight, and after about an hour, Luke's BP is climbing up --Praise God! God has really taught me the power of standing on His word and calling His name, and most importantly believing that as it is written, it will be done. Very hard process, especially when you're child's life is on the line. But there's no one else I'll rather call from my vantage point. Oh by the way, his ECG is slowly increasing as well. Please stay in prayer for Luke.

Today was a rough day for a couple of parents, as they had to witness their children near extreme critical status. I had to put my arm around a dad who saw his 14-month old daughter get put on life support. I have seen ER on TV but nothing close to the reality I see here at ICU. I just don't know how people face this without God. I know I will be lost without him-- as the song "I can't even walk" that we used to sing in our church, if not for Him and the people he sent to help us through, I can't even imagine how this journey is possible for Jen and I.


I thought number one would surely be me,
I thought I could be what I wanted to be.
I thought I could build on life's sinking sand
But I can't even walk without You holding my hand.

I can't even walk without You holding my hand.
The mountain's too high and the valley's too wide.
Down on my knees, I learned to stand.
And I can't even walk without You holding my hand.

I think I'll make Jesus my One and my All
From now on when in trouble, only His name I'll call
And If I can't trust Him, I'll be less of a man
'Cause I can't even walk without You holding my hand.

There's so many times a day that I think about all the wonderful people we were privileged to have around us. I thank God for all of you and nothing that we can say or do will ever capture what you have been to us in getting through each day of this journey. Your prayers, meals, words of encouragement, comments on the blog, donations, friendship, time, and steadfastness have shown us how much love can heal. I remember my trip to Sri Lanka after the Tsunami, and in my mind a simple act of love, how much it impacted the children that were devastated. Like Jen, I'm more accustomed to giving and it is humbling to be on the receiving end. Life is but a shadow and it passes by so fast, and I think what matters in the end is how much difference we made in each others lives. With that prophetic thought:), I'm going to try and get some sleep. Good night!

Thursday, December 11, 2008

Posting Some Pictures

I just wanted to post some pictures for you all to see before I leave for the hospital.

Uncle Michael finally gets to visit Lukey.

My sweet, precious Lukey

Lukey gets a visit from Santa, and Santa leaves lots of gifts for him.

Levi gets to see santa at The Teardrops to Rainbows holiday party. I overheard him asking for a football helmet. Santa said he would tell the elves.

Lukey has been doing well last night and this morning. Please keep him in your prayers. Uncle Michael is now recovering at home, please pray for a speedy recovery so he can be home with his family for Christmas.

Wednesday, December 10, 2008

Wednesday Evening at GUH

Luke had a good day today. Thank you for your prayers. His BP and heart rate stayed stable, and the new liver is making progress. I'm believing that he's going to have a good night and that I will get some sleep in my new found recliner!

This afternoon Luke had his first picture taken with Santa. Although Luke was sedated and didn't get to sit on Santa's lap for the picture, I'm convinced now that Santa is real and he comes by when you're sleeping... but you must be good! Much thanks for Fairfax Police Officers for organizing that event.

Michael was discharged from the hospital this afternoon!! Jen was giving him a hard time about his new look :) Thank you so much for your prayers and please continue to lift him up as he recovers at home.

They up the sedation on Lukey, so I haven't been able to make eye contact with my trooper today. I can't wait to hold him soon. I trust in the Lord for his healing --Lukey is cancer free, I believe that in Jesus name. I pray for those children that were succumbed to this monster and let peace be still for the parents as they cope with the loss of the baby during this season.

God Bless you and your family.

Update on Luke

Luke held on to stable BP levels and had a fairly good night. Thanks for your prayers. This morning his ECG (heart) rate is on the low side and they are keeping a close eye on that. I anxiously pray for Luke to do well today. It is a daily walk and I do not want to get too ahead but I claim in Jesus name that he's home for Christmas! Also, as I noted yesterday, I believe in Luke to do well enough that they will take him off of the ventilator by tomorrow evening. Please pray with me and believe that it is done.

Overnight he's fluid output was good and we need that to continue. His glucose level was high, as they started the TPN (liquid food) yesterday. I think the dr will make the adjustment there this morning. He's breathing, immunosuppressant levels, CVP, etc need some improvement today.

All in all, he's stable and slowly progressing. Today will be a great day for Luke -- in JESUS name!

Michael is doing much better today. He's my All American hero - Life saver (Luke and a recipient on the list), 10 yr Army veteran, father, husband, and one of the most humble people I know. If you have an opportunity, please send him a card with a word of thanks --20423 Middlebury Street, Ashburn, VA 20147. He reminded me of the price Jesus paid for me! Also, I honor Ellen and Emmy Lou for their sacrifices as well. Jen and I (of course Luke) are ever so grateful to them. Thank you in advance for joining me in showing love and appreciation to this great family.

Please pray for our steadfast team -- prayer warriors, Levi's care helpers, meal providers, well wishers, etc. We thank God for you and pray that God's favor will be with you and your family.

I Love my wife for her courage and prayers. I can only imagine how Mary felt, seeing her son suffer and pay the ultimate price -- no comparison to our journey but these are life lessons I can learn from this journey. Luke's cancer is 1:million children but God's sacrifice for over 6 Billion people and counting (just a random thought!). Please keep Jen and the baby in your prayers. She's always my love and my help mate.

With love and sincere appreciation.


Tuesday, December 9, 2008

Blood Pressure Levels

Luke's BP levels were fluctuating even after the morning episode. We had requested prayer, and all of you were praying for us. Since about 5pm, it had started to steady around 90, which is great. Praise God!! Thank you CCC and Luke's friends all over the country and the world for praying for our trooper. Your prayers continue to lift Luke up and please keep them as desperate and as fervent as possible -- "then hear from heaven their prayer and their plea, and uphold their cause" 2 Chr 2:35

I'm praying that we will have an uneventful night and Luke continues to improve. Let's believe together that in the next couple of days... Luke will be off the ventilator, be able to off load over 3 liters of liquid from the body (right liquid balance), continue to have good liver functions, no viruses or flu symptoms, steady bp, and a downgrade from ICU -- Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Also, please pray for all the children here at the hospital and all around the world that are fighting for their lives. I see the stress of the fellow parents-- they are fighting a good fight with courage. Some of these children have never seen the day light. Parents have fought long and hard, and are weary tonight. Please pray that God will send comfort and strength.

Tuesday Morning

Luke has been doing well all the way until this morning, where we had a major ER type of atmosphere in the room. His blood pressure dipped and kept going down. They had to give him about 800cc of liquids and medicate him with BP enhancers. I was nervous to say the least, but as I have done in the last 4 months, I held on to God's word. He hasn't forsaken me and has always come to my rescue when I called on Him. He's my strength and ever present help. He's my fortress and my hiding place. After about an hour of the drs, nurses, and medical staff's hard work, and my cry out to God, Luke's BP went up and stabilized. At the moment, we have Dr. Fishbein and ultrasound tech going through scans of Luke's tummy to figure out what took place this morning and figure out if there was any damage to his new liver.

Please continue to keep Luke in your prayers. As you know this is a major surgery on a baby and per our PICU dr, he's progressing well but not "out of the woods" yet. We always trust in God's report but God sure trust us in our ability to lean on Him!!

In the last 4 months I've learned a lot about people and life. I'm more encouraged about people now much more than before. About life, well, God didn't lie when he said in John 16:33 "These things I have have spoken to you, that in Me you may have peace. In the world you will have tribulation, but be of good cheer, I have overcome the world." God has sent great people our way to help us get through this storm. Our daily peace comes from the relationship with God, and one thing I can tell for sure is that your prayers have made a major impact already in this journey, THANK YOU! When you go through hell, it is nice to know that heaven is hopeful with people like you. Please keep Luke in your fervent prayers - pray for
  • Luke's new liver to continue to function well
  • Stable blood pressure, pulse, CVP, etc
  • All the drs and medical staff for wisdom and direction for Luke's care
  • Daily peace and rest for Jen (and the baby!), Levi, Luke, and I
  • All our helpers - God direction and God's blessings for their sacrifices

I cannot say enough about my brother-in-law, Michael. He traded places with me giving Luke a life - when my blood and liver were ruled out. His blessing is eternal and his love is the greatest human love of all. I pray for him and thank God for the progress he has already made since the surgery. The sacrifices his wife, Ellen and their 18-month old daughter, Emmy Lou are making cannot be repaid. We are ever so grateful to them! Please keep Michael, Ellen, and Emmy Lou in your prayers. Pray for a speedy recovery and reunion.

Update: Ultrasound was reviewed by Dr. Fishbein and it seems like all the vessels are working good. Praise God! They are monitoring the BP, and trying to get the liquids out of his body slowly. He will be on the ventilator for two more days, I think. And his food will resume tomorrow through a tube. His BP is fluctuating and we need urgent prayer.



Sunday, December 7, 2008

Sunday Update

Last night I went to the hospital to see Lukey and Michael. Lukey is doing good. The liver function is good and they were just trying to get his blood pressure stabilized. He woke up while I was there and put his arm up on his forehead. They quickly gave him more sedation so he won't move around. He looks much better, just a little puffy. He is retaining a lot of fluid. Because he has so much fluid around his lungs, they don't want to try to take him off the ventilator. They want to wait until he gets rid of some of the excess.
Michael was not feeling so great last night. He was having a lot of pain in his stomach. The Dr. said that they used retractors to hold his stomach muscles open during surgery so it is not surprising that he is having painful spasms in his stomach muscles. They tried to get him to swallow a little ginger ale and his muscles all started spasming. I felt very badly that there is nothing I can do for him. The good news is they moved him out of the ICU last night and into a room in another building. The woman who was next to him in the ICU was a serious problem. Not to be mean, because I am sure she was suffering, but she was never quiet. He wanted out of there so badly. Now he is sharing a room with another liver donor. I am about to head out to Georgetown to visit everyone for awhile. My mom flies in tomorrow evening..thank God! I'm sure Michael will feel much relief when she gets here.
I will continue to keep you posted their progress. Thank you for all your prayers.

Saturday, December 6, 2008

Latest Update

I just spoke with Ben and he gave me the update. What the surgeon thinks happened is that the liver was settling into position, and during that process one of the vessels formed a clot in it. The blood flow had actually started to improve before he went for surgery, but Dr. Fishbein wanted to be absolutely sure about it so they went ahead with the surgery. He was in for about two hours and it looks like everything is going well now. They will do another blood test in about an hour which gives them some information they need. Dr. Fishbein said the liver has really settled in now, so they could see how everything is working in that position.
Ben told me that Luke woke up this morning and looked at him. He said he lifted his arm up, and then started to try to pull out the tubes and things. They had to sedate him again. My baby just wants to wake up and be unhooked. I got a status report on Michael too. He is having a lot of dizziness so they are going to try a different medicine to get it under control. Ben sounded very tired on the phone. He will call me when they have the results of the blood tests. Levi is really missing his daddy, so I think we will drive out to Georgetown this evening and drop off some food and my brother was wanting his phone and Ipod. Thank you for all your prayers. We appreciate them so much.

Transplant Update

Sorry I didn't get a chance to update last night. I had a very hard time last night after seeing Lukey. When we were finally able to see him, I just burst into tears. The ICU is a very busy and stressful place to be in...and loud. When we went into the room there were nurses and a doctor and respiratory therapists in there. So many machines...all beeping and alarms going off and my little baby just laying there hooked up to so much stuff. I could not handle it. I thought I was going to pass out. Just thinking about it right now makes my heart start to race. I had to sit down and try to breathe better. Needless to say, I came home last night. I was going to go rest at the Ronald McDonald House, but Ben said I should just go rest at home with Levi and he would stay with Lukey and call me if there was anything. I felt like a deserter. I had gone down to see my brother and he was in a lot of pain and feeling very nauseous. I felt so out of control and helpless, I just could not handle it. The Dr. said that everything was going well. The first few hours after a transplant they have to watch very closely and try to balance the fluids in his body and watch what is coming out of the liver to make sure there is no bleeding. I have been fighting a nasty cold paired with evening nausea and too much stress. I came home and slept. This morning Ben called and said that they have to take Lukey back to surgery. One of the vessels isn't allowing blood flow, so they have to go back in and see why that is happening and fix it. It's not rare for this to happen I guess, they said it is common. I just spoke with my brother on the phone and he is feeling better than yesterday. That gave me some relief. Let's just take Lukey to the Lord in prayer and pray that the vessels will all work and allow blood flow. Let's pray for his body to accept the liver and for a quick recovery. Pray for a quick recovery for Michael. Pray for Ben and John and Dileep who are constantly posted at the hospital watching and waiting. And please pray that God gives me strength to get through this. I need to be strong for my baby. I'll update after I know more about Lukey's surgery today.

Friday, December 5, 2008

Out of Surgery

Lukey is out of surgery. The surgeon came out and spoke to us about the surgery. He thought that it went very well. He said it was the best decision to do the transplant because the tumor was a really bad one. It had spread to the vena cava, so part of that had to be removed. Dr. Fishbein said he got really good margins and that he tested the lymph nodes for cancer cells..there were none. He said they got all the cancer. Due to some creativity in attaching the new liver, Lukey will have to remain sedated on the ventilator for at least two days. They don't want the liver moving around. Once it has had a chance to adhere and other organs have come in around it they will take him off the ventilator and slowly start waking him up. We have not seen Michael or Lukey yet. We are still waiting. They are both in their rooms, but still getting situated with the machines and hook-ups. I will update later on tonite in more detail. We thank you for all your prayers and encouraging words. Lukey is cancer free and we Praise God for it!! Love to you all.

Surgery Update 2:50pm

The surgeon just came out and said that Michael is done. They are just closing him up now. He said they got the liver out and it was a very healthy looking piece of liver. He will going up to the ICU where they will take the breathing tube out and I can see him in about an hour. The Dr. said that they had just started putting the liver in Luke and it would be about three more hours for Luke. The patient advocate then came out and said she had just peeked in on Luke in surgery and everything was going well. I will continue to update as I know more. Thank you all for your prayers. I feel more at peace than I normally would in this situation.

Surgery Update

Both Lukey and Michael are currently in surgery. Lukey went in at 8:45 am for a little exploratory look first. We sat with Michael until his part was a go. Michael went in at 10:30. The last update that I received was that Lukey was kinda in a holding pattern until they got the liver portion out of Michael. They had just started on Michael, so we are just waiting. She said that vital signs on both of them were good. I cried when they took Lukey from us. I just said a prayer, Lord I put him entirely in your hands. We then went and sat with Michael. Our good friend Dileep had been sitting with him all morning and keeping him company. That truly meant a lot to me. I will continue to update this as we receive more information. Please keep Lukey and Michael in your prayers today.

Wednesday, December 3, 2008

Urgent Update

We will be admitted into Georgetown hospital tomorrow morning at 11:00 am. Michael and Lukey will go into surgery Friday morning between 7-8 am. We request urgent prayer for both Lukey and Michael as they go into surgery. We pray for a quick recovery and no complications. I also ask for prayer for Ben and I. We need strength to get through this time. I know I should not be afraid, but as a mom and a sister I am very nervous about this. We appreciate your prayers. Will keep you in touch.

Life Update

I hope everyone had a fabulous Thanksgiving. We have a lot to be thankful for. I say any Thanksgiving where I don't have to cook, is a good one. Our good friends John and Gilian surprised us with an entire turkey dinner for lunch. All we had to do was heat and eat. Never had it so easy. Then at 5pm my brother flew in to Dulles and at 6pm we had another dinner at a friends house in Maryland. It was a full day...in more ways than one. I love the mashed potatoes and rolls with green olives stuck inside! Yeah...that's not a pregnancy thing...I've always loved it. John and Gilian trying to carve the turkey.

The day after Thanksgiving we got our Christmas tree. I was sad that I did not get to go and be a part of picking out the tree this year, but it was way too cold for Lukey. Ben and Levi and my brother went and cut down the tree. They picked the perfect tree. Levi decorated it with all the shatterproof ornaments he could get his hands on. You can imagine how "lovely" it is! Levi say's it's the best tree in the whole world and that is enough for me. Gone are the days of making my Christmas tree a matching theme or even just pretty. For the next 10-15 years it's all about the boys and hopefully the little girl baby growing in my belly.

Speaking of babies. I finally had an ultrasound to see how far along I am. I am 12 weeks. This has to be a girl. Levi believes it is. He wants to name her Lily Lou. I said Lily, yes but Lily Lou sounds strange. I got to hear the heartbeat and see "her" moving all around. It is always an awe inspiring sight to see them on ultrasound.

Last weekend we took my brother to DC to see the sights. It was pretty cold and kind of a rushed tour because I forgot to bring a bottle. He got to see most everything. The White House, the Capitol, Washington Monument, Lincoln Memorial, and the Vietnam Memorial.

Levi looking quite cold.

I love this hat! He looks like Elmer Fudd.

Michael at the monument.

So now Michael has finished all of his tests and we can go into the hospital as early as Friday for the surgery. We got a call after Thanksgiving that they had two livers and they were 75% sure we would get one. Well we didn't. I wish they wouldn't call unless they were sure we were going to get a liver. It's going to be a long road yet. I will try to keep the updates coming. Lukey will be in the ICU for a few days, so I might be a little slow at first with the updates. You never know. I really hope to be home for Christmas. Love to you all, I need to go take care of a very fussy little guy.

Thursday, November 27, 2008

Day of Thanksgiving

We want to say THANK YOU for your continued prayers and support. You lifted us up when we were down, and with your prayers we were strengthened and calmed, and we were touched by your visits, meals, kind words, cards, gifts, and friendship -- only God knows how much impact you had in helping us weather the storm. We are blessed and THANKS!

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me." Mat 25:40

We wish you a day of blessings and much peace. May the Lord make His face shine upon you and your family.

Happy Thanksgiving.


Monday, November 24, 2008

What a Morning!

We got a call at 3:30 this morning. "We have a liver." I happened to be up feeding Luke at the time. I heard the phone ring and I immediately knew what it was for. I was frozen in my chair. "I'm not ready, Lord". Ben reached the phone, but I couldn't hear what he was saying. He opened the door to Luke's room and looked at me. They have a liver, he said. I immediately stopped feeding Luke because I knew he needed to have an empty stomach for surgery. We kicked into overdrive. Luckily we have a friend staying with us this week. We woke Gilian out of a deep sleep. "We have to go to the hospital". I started packing and getting everything together. I wanted to go in and just hug Levi and say I'm sorry I won't be here when you wake up.
Just as Ben was taking everything to the car, the phone rang again. They said don't leave just yet, there has been a small mistake. We were not the primary recipients of the liver, we were the back-up to the primary recipient. They said if the primary refused the liver for whatever reason, then it would go to Luke. Well...they wanted the liver. We now know that we are next up for a matching liver. Ben wanted me to go back to bed and try to get some sleep. I could not fall back to sleep. My mind was going 100 miles a minute.
It did give me a heads up though. I am spending the day getting all our things in order for a long hospital stay. The laundry is done, the carpets are vacuumed (thanks to Gilian), and the stack of bills and things on my desk are almost gone. Next time they call....I will be physically ready..although not emotionally.
We have started a fund for Luke called Luke's Hope. You have probably seen it on the sidebar. I honestly don't know how people without insurance can make it through these types of things, because even with insurance it is a struggle. We will be doing some fundraising things in the future. Thank you to my brother for doing his Benefit Boot Camp and raising money for Luke's Hope. Thank you to all you who have given to Luke's Hope. We are so very, very thankful. Luke and so many other children are fighting cancer everyday. Some have been fighting for years. These kids are so brave and inspiring. Watching them will make your worse day seem like a walk in the clouds. I cannot complain about anything. We appreciate all the prayer and support we have received. Thank you all so much.

Wednesday, November 19, 2008

An 11:59:59 God

We have just passed 100 days into our journey. We met with the transplant surgeon at Georgetown this week. He will be putting Lukey on the list for a liver. Meanwhile, my brother is going to go through the rigorous testing process to be a donor. They want to hold off on the chemo to see if he will get a liver in the next few weeks. They can only hold off the chemo for two-three weeks maximum. If he has to do another round, it will be at least three weeks before he can have the surgery. We are also waiting for a second opinion from Pittsburgh. I still believe God can step in and do a miracle. Dr. Jeffers preached the other morning that we serve an 11:59:59 God. He can step in at the last nanosecond and perform a miracle!

Levi's Super Sib trophy for being a great big brother to Luke
Levi had a Thanksgiving program and lunch at his school today

Lukey has been putting weight back on. He is eating really well and is back up to 9kg. He has lost all his eyelashes and most of his eyebrows, but seems to be clinging on to what hair he has left. He is also extremely active. Diaper changes look like wrestle mania and he barrel rolls across the floor.
Today Levi tried to take a toy out of his hand and he let him have it! I don't know what he was yelling, but it didn't sound good. At least he can stick up for himself :o) I love these days that seem like back to normal. I wish it could just stay like this. I wish the cancer would leave our lives as quickly as it entered.
We have learned so much in the last 100+ days about ourselves, about God, and about others. We probably still have a lot to learn. There are so many good people surrounding us. People praying, people taking care of Levi, people bringing us meals, and so many other things. Each and everyone is important to us. We are very blessed indeed. My song these days has been Casting Crown's I'll Praise You In The Storm. I always think the line "my strength is almost gone, how can I carry on if I can't find you". I've been told I am a strong person. I am sooooo not strong. I never volunteered for this. If I had a choice I would have turned my tail and ran and hid until it was all over. As a mom, you feel very defensive and protective about your babies. My animal instinct wants to hold Luke so that nothing can see him and rip to shreds anything that comes to harm him. I want to grab cancer by the throat and choke the life out of it. Whew..that took some energy to write. But I can't do that physically, so I speak to it. I speak the word of God and I claim healing. I speak the word over Luke and I rebuke cancer in the name of Jesus and that is more powerful than me choking it to death. We press on. We'll make it through. My God is an 11:59:59 God. So, what time is it?

Wednesday, November 12, 2008

A Quick Update

A quick post to fill you all in on what we are up to. I'll include pictures in my next post, but tonite I am physically and mentally exhausted. I went to "Mom's Weekend" and had a great time. It was just what I needed, and what a place. Beautiful!! I met so many wonderful and strong women. It really meant a lot to talk to someone who has either been where I'm at, or is battling it right now. We shared stories and websites and belly danced WHOO hoo! Very relaxing...and everyone survived my one night away. Ben kept telling me that everything was great at home and to just relax and enjoy. The thing is, even if it wasn't going great..he would not have told me. He's just an amazing guy.
We went to the clinic and to Georgetown University Hospital on Tuesday. We went for Luke's transplant evaluation. So here's the deal. The tumor has gotten much smaller, but is still on the major vessels. These surgeons could remove the tumor no problem, but due to the location of it there is a high risk of spreading to other organs. I did not realize that because it is on the vessels, the vessels can carry the cancer cells all over his body. The recommendation is a total liver transplant. This will carry many lifetime challenges for Luke, but we believe it is the best decision. The Dr. said that many times they have done a resection, just to have the cancer come back less than a year later. It is much harder to have a transplant after having a resection. We will meet with the surgeons on Tuesday and Luke will go on a list for a liver. We are not sure how long we will have to wait, so meanwhile he has to start another round of chemo. I can't be a living donor because of the pregnancy and we found out that Ben can't because his blood type is B and Luke's is O. My brother has offered to give part of his liver, the offer just chokes me up. It is a gift of life, and just the offer means so much to us. The Dr's prefer to do an entire liver because partial liver transplants are trickier, but we don't want to wait for too long. It's something we really have to think and pray about.
Luke will be on autoimmune suppressants for the rest of his life, but be able to live an otherwise normal life. These Dr's don't candy coat anything for you. They just tell it like it is. If death is a risk...they say so. The Dr. told us several cases of the child dying, which didn't make me feel good, but they want to make sure the facts are known. I'm already scared, I don't need to know anything else. I struggle to make sense of all this. I don't know why God chose Lukey to go through this, but I do know that something awesome is going to come out of it. Job asked his wife if we are to accept only the good things from God and not the bad. He lost everything: family, livestock, his health and yet was still able to say "The Lord gives and the Lord takes away, blessed be the name of the Lord". I want to have that attitude.

Wednesday, November 5, 2008

Busy Week

We have had such a busy week so far, and it's not over yet. Monday we had to go to Children's DC for Luke's GFR (kidney) scan. What a nightmare. Getting to the hospital was a challenge. We took a wrong turn on a round about and the GPS led us back through an area that was a little scary to me. I won't even get into the parking. Luke's scan was done in Nuclear Medicine and the tech had told me that because I am pregnant I could not hold him because he was going to be radioactive for a time. Torture. After the three hour test there, we had to go to the clinic for his blood counts and check-up. I asked the nurse at the clinic about not holding Luke and she checked with two of the oncologists who called down to DC and they told me yes I could hold him and love on him, but I need to wear gloves when changing his diaper. It's the same thing with the chemo. I took him from Ben and kissed all over his little face. Lukey's counts looked good, so I can stop giving him the shots..yay!! Tuesday I had to take Luke to Fairfax for another hearing test..the hearing has stayed the same, which is good. Today is our one day of no Dr appts. Levi is in school, Lukey is sleeping, and I have a moment to fill you in on whats going on before I finish folding the laundry. Tomorrow will be a rough day. Lukey has a ct scan in the morning under anesthesia. He cannot have anything to drink or eat after midnight tonight except the contrast. We are looking forward to a very rough night. He eats every three hours usually. After the ct scan he has a ECHO scheduled to check his heart. Friday we go to the pediatrician for a shot to protect him from RSV throughout the winter. He may also get a flu shot as well. So there you have it...we are on the go. Friday we should get the results of the CT scan. All decisions will be made from there. I trust the Lord with Luke. It is completely out of my hands.
Lukey and Levi-Best Friends

I will be going away for a night. "Mom's Weekend Off" is on Saturday and Sunday. It is a weekend for moms of children with cancer. I struggled with whether or not I should go, especially because I am still breastfeeding, but we will make it work. Ben wants me to go and it is just one night. It's at Camp Friendship which is a horse ranch in Maryland. They say prepare to be pampered. I may just sleep the whole time :o) I will desperately miss my little guys, but I do need to take a little time for myself. I'm excited and hesitant.
Me and My Boys
Meanwhile, Lukey is trying to get around the only way he knows how, by rolling. It's hard for him to crawl because he has the line and tube hanging from his chest to his belly button. So he rolls. He rolls over and over and over until he gets where he wants to go. Levi calls him roly poly. He might be a little delayed in some of his development because of this, but he'll catch up pretty quick. He says mama!!! Not dada! He's just precious. Levi is so good with him too.
Ben, Lukey, and Neil Armstrong

A little bit of yard work

Remember how fun this used to be?

Please remember us tomorrow in your prayers. We believe that the tumor has moved away from the vessel. Thank you so much for everything. Love to you all!

Monday, October 27, 2008

Life's Little Surprises

I know it's been awhile since my last update, and I don't want Ben getting too comfortable posting on my blog :o) We were in the hospital for 3 days and came home last Friday. Luke had three days of chemo. Cisplatin on day 1, Doxirubicen on days 2 and 3. Very intense series of chemo. He did absolutely great. My boy is so strong and so blessed. He has had NO vomiting or other visible side effects. I have to give him a shot of Neupogen everyday to keep him from crashing like he did last time. Now they are making me give the shot like a shot instead of in a catheter. I actually have to stick it in his flesh. I HATE IT! He still loves me even after I have to hurt him a little. We went to the Dr. this morning and Luke's counts look really good. We now wait for 2 weeks and then he will have another CT, Ultrasound, and Echo. I believe with everything in me that Luke will be fine. There will be no transplant.

It can be very hard to deal with all these emotions and changes in our lives. I often think that I can't handle any more than I already have on my plate. After all, God said he would not put more on us than we could bear...right? I think God has seriously overestimated me. Friday night I found out that I'm pregnant. Evidently you can get pregnant on "The Pill". Fear gripped my heart and I had a serious breakdown. God, what are you doing to me? Can I handle this? It was an overwhelming feeling of fear and inadequacy. Afterwards, I came to peace with it. A baby is always a miracle and I know God will give us the strength to get through this also. We are now looking forward to a healthy baby sometime this summer.
We have been so blessed by so many people. So many have brought us meals and toys for the boys. I hope that one day I can repay the kindness we have received from so many. Thank you so much to our Pastor and Sis. Mitchell for their constant prayers and our church who prays continually for Luke's healing. We are all going to witness a miracle. Thank you to Moby and Rengas for your selfless giving of your time. Moby is our angel. Thank you Jesus for being so faithful. You are EVERYTHING to us!

Moby and Lukey at the hospital.

Moby giving Levi his breathing treatments.

Rengas visits for the weekend!

Sweet Angel

Friday, October 24, 2008


When we feel we have nothing left to give
and we are sure that the song has ended.
When our day seems over
and the shadows fall
and the darkness of night has descended.

Where can we go to find the strength
to valiantly keep on trying
Where can we find the hand that will dry
the tears that the heart is crying.

There's but one place to go
and that is to God
and dropping all pretense and pride.
We can pour out our problems
without restraint
and gain strength with Him at our side.

And together we stand at life's crossroads
and view what we think is the end.
But God has a much bigger vision
and He tells us it's only a bend.

For the road goes on and is smoother
and the pause in the song is a rest.
And the part that's unsung and unfinished
is the sweetest and richest and best.

So rest and relax and grow stronger
let go and let God share your load.
And have faith in a brighter tomorrow.
you've just come to a bend in the road.

~ Helen Steiner Rice ~

Hope this inspires you as much as it did me.


Saturday, October 18, 2008

One day at a time...

God is our strength and ever present healer. In HIM alone we will trust. The Holy Spirit helps us in our weakness and guides us everyday.

Jen is right, when things are bleak and seem almost impossible, God steps in. We know this for sure... through God all things are possible. We give Him praise and by faith receive His miracle.

I want to thank everyone for your continued prayers. We pray for your steadfastness, and may God bless you and give you a word to share with us in our valleys. Thank you for taking this journey alongside us. Please keep posting your comments on this blog. I can't even begin to tell you how comforting to know you’re praying and thinking of Lukey and our family. We read them ever so eagerly!

I want to say how much I love my wife. She's so strong and such a solid rock to me and our children. We are going to fight a good fight and I’m encouraged by my wife’s strength and determination.

God, you're our strong tower and ever present help, and we are desperate for your touch. Lukey needs you. We will not let the enemy steal our joy, and you gave us Lukey and we have already dedicated him to you. Keep him strong and safe, and give us strength to take it one day at a time.


Friday, October 17, 2008

The Good, The Bad, and The Ugly

I realize it has been a week since I have updated. Let me tell you...it has been quite a week. We went into the hospital for a fever. Turns out Luke had the Rota virus. We were put in a room in isolation. We were not allowed to leave our room unless we were leaving the hospital. Whenever someone entered the room, they had to be gloved and gowned. It felt like some kind of weird movie. Ben and I had a good time playing the Wii. I am not normally a fan of video games, but the Wii is so much fun. I worked out my stress in the boxing game...I won! Poor baby Luke, he had bad diarrhea, but he was still a smiley little guy. He got his last chemo treatment while we were in the hospital. Round three is finished. We came home on Tuesday.
Sweet Lukey sleeping

Playtime for Lukey

Now for the sad news. The tumor has not come away from the portal vessel. The radiologist that did the Ultrasound didn't seem to think it would ever come away from the vessel. On Thursday we went to the clinic and met with his oncologist. We are now facing a probable liver transplant. She wants to try one more round of intense chemotherapy. It would be the Cisplatin at an increased dose and another one that right now I can't remember the name of. The Cisplatin is what has caused the hearing loss, so it is likely he will lose more with an intense round of chemo. The new drug can cause damage to the heart, so he will have an Echo cardiogram and several ultrasounds of the heart to keep an eye on it. I have to admit I am scared. I just don't know how much his little body can take. If it doesn't move the tumor away from the vessel he will have to have the transplant. The question is...do we put him through the chemo if he will end up having to have a transplant anyways? I don't want him to lose anymore hearing. I just want my little boy healed. I know that when it looks really bleak is when God steps in and performs a miracle. It looks so bleak to me right now, I am struggling to stay composed. If he does need the transplant, both Ben and I will be tested to be a possible donor. If we go ahead with one more round of aggressive chemo, we will check in to the hospital on Tuesday. I know God is in control of every situation. We have dedicated Luke to the Lord, and trust Him with everything. We need to pray that the tumor pulls away from the vessel. That is so important right now. Please join us in prayer that the tumor pulls away..it has to pull away. Please pray for strength....I am grasping at straws here. We need strength.
Levi and I are both sick. It has been some kind of week. He went to the Dr. and is now on breathing treatments. I went to the Dr. and found out I have a virus somewhat like chicken pox, but different. I thought I had a rash, but I guess not. I don't know where I could have picked that up. No one else got it though and it is almost gone now. We need to stay healthy. Ben has been the most wonderful man in the world. He amazes me all the time. Together we will come through this, we just need the strength to get there. Intercessory prayer warriors needed. Thank you all from the bottom of my heart.

Saturday, October 11, 2008

Back to the Hospital

This morning we were scheduled for a CT scan, and then an unscheduled fever showed up. Luke had been running a slight fever for a day or two. This morning (early) his temp went to 100.9. Once his temp reaches 100.4 we need to take him to the ER. So I called the Dr. and she said to take him to the ER and go ahead and get the CT scan as well. First of all they told us to arrive at the hospital at 7:00 am, but no one even got there to help us until a quarter to 8...GRRRRR!! Then they said to just go to the ER and they would do the CT scan through the ER. Okay so we finally get in the ER and they start on the blood work and vitals and all that. Turns out he is severely neutropenic. His ANC was 69. On Monday it was 1100. 500 is considered very low. So on go the masks and pretty much a quarantine type situation. The CT scan is a whole other story. How do I begin this nightmare story? How many times can I say....it is very hard to start an IV on my child? It is very hard...it is very hard. I had to pin him down while the nurse blew out his first vein and couldn't get it in the second one. Why don't people listen? They said there was no way they could do it. So now this is the kicker...the nurse in the ER used to work in Oncology and said she would put the contrast through his central line no problem. It worked just fine. All that torture for nothing. Then the scan...the tech was not a nice lady. She was in a big ol' hurry and was irritated that he was moving around. I'm venting this so it will leave my mind forever. To make a long story short (too late)...the CT scan came out blurry and he will have to have an US on Monday and possibly another CT scan. Pray for my sanity.

Anyways, Luke is on a couple different antibiotics and Neupogen to boost his white blood cells. He is supposed to have his last chemo on Monday, but they won't give it until his WBC count comes back up. I really don't know when we will get to go home. In all this...God is good and faithful. I thank God for every good day and every bad day. My God is faithful, I call him Faithful, he is so faithful to me....My God's a healer, I call him healer, he is a healer to me!!!

Friday, October 10, 2008

A Change of Plans

The Dr's office called yesterday and wanted to set up all the appointments right away. Today I took Luke for another hearing test and tomorrow morning he has his ct scan. Monday will be his last chemo for this round. I thought it was strange that they want to get all the scans and things before he finishes this round. The results of the hearing test were disheartening. Luke is still losing hearing in the high frequency. Now his right ear has lost the higher frequency also. Tomorrow Luke has a CT scan at 7 am...which means we have to leave the house no later than 6 am...6am. Saturday is my one day to get some extra sleep in the morning. I guess I have the following Saturday to look forward to. I hope we don't have the same issues with the IV this time, they better just get it right the first time. I can't be responsible for my actions at 6 o'clock in the morning and seriously sleep deprived.
The Dr's will re evaluate for surgery, after this scan. Please join us in prayer that the tumor is GONE, has shrunk, and moved far from the portal vessel. We need to get this out of his body. I want my little boy healed.

Tuesday, October 7, 2008

Chemotherapy Day 10 Update

On Monday Luke had his Vincristine treatment. We were in and out of there in two hours....unheard of. All his blood counts look good and his liver enzymes went back into the normal range. His AFP was 1190 a week ago. On Monday it was 1004...not bad for a week. After his last treatment next Monday, he will have another CT scan (Oh Boy), another hearing test, and another kidney function test. They will re-evaluate for surgery at this time. I really believe they will be able to get it out this time. In Jesus Name! Luke has been doing so well..up until about 3:oo this morning. He threw up his entire bottle and then threw-up again at the next feeding. He kept his last bottle down and I will feed him again in a few minutes. Please pray that he doesn't get dehydrated. His spirits are up though and that makes it much easier.
Levi went to the dentist this morning. I am so serious when I say I want to go to a pediatric dentist. They are decked out with kid pleasing attractions. I had fun playing air hockey with Levi while I sipped a delicious coffee from the coffee bar. Levi got to pick a movie and then he wanted them to turn on the overhead trains. Afterwards , he picked out some toys (cars of course), and got a bouncy ball from the machine. Oh yeah..he got his teeth cleaned also. No cavities!! He's only had teeth for about 3 1/2 years so he shouldn't have any cavities. He was such a big boy! Last night Levi would not eat his dinner so I had to call santa (aka Uncle Michael). He ate everything after his talk with santa. He really wants a football helmet. He said his favorite football team is the Stonebridge Bulldogs, the high school by our house. He has become such a little boy...where does the time go?

Sunday, October 5, 2008

A Little Fall Fun

On Saturday we joined our friends Rob and Sandra for a little fun at the Fairfax Fall Fest. What we got was long lines in the sun, a train that kept trying to run us over, $5 cups of lemonade, and an assortment of bug bites. It was all worth it to spend time with friends, which was also made better by a trip to Tony's NY pizza. It was a beautiful day to be outside with the kids, and since Sandra and I found a nice shady, grassy place to rest while the guys stood in line in the sun with Bella and Levi, it was all good. Truly enjoyed the pizza, the salad, and the cannoli...sounds like a lot huh? Yeah..but it was yummy! Tomorrow we go in for more chemo, but Lukey has been doing great. Levi may be coming down with something. He was running a slight fever earlier..please pray for Levi's health. All our health could be affected by one person getting sick. We all need to stay healthy!!
I will let you all know how the appointment went. We should get another AFP tomorrow, because they took the blood for it at the last appointment. I hope everyone had a restful weekend and have a great week. Thank you all for your continued prayers. We are so blessed!
Levi and Bella...so sweet!
Rob, Bella, and Levi. Time out for kettle corn!
Gigi enjoying the grass. Such a cutie!
Anne and Dianna...oops I mean Sandra and me enjoying the pizza!
Levi checking out the firetruck. He thought it was pretty cool!

Lukey kept taking off his shoes and throwing them on the ground.

Wednesday, October 1, 2008

Chemotherapy Day 3 Update

I'm late to update again due to an unexpected trip to the ER, being totally exhausted, and... um life. On Monday we went to the clinic to get Luke's Day 3 chemo treatments. He received two injections of chemo, an injection of anti-nausea medicine, and an hour long infusion of antibiotics. We were there for quite a while. I sometimes wonder how his little body can handle all these medicines. He is doing great though. At the Dr. office we were able to look at the CT scan and compare it to the first one. The tumor has shrunk quite a bit. We also got the latest AFP...drum roll please.....1190!! Can you believe it? The last one was 33,000. To recap the AFP numbers...we started out at 400,000 at diagnosis, then to 190,000, the last one was 33,000 and then this last one 1,190 before starting the third round. The chemo is really working to kill the tumor cells. Normal range is 10 or below, but we are getting there! Back to the trip to the ER. Tuesday afternoon I went to flush Luke's line as usual and it would not flush. That usually means there is a clot in his line. We had to drive to Fairfax Hospital ER to be seen. The nurse tried to flush his line and could not and did not want to push the clot into his blood stream. Then another nurse who is familiar with central lines came in and tried a smaller syringe. It flushed beautifully. She said sometimes the pressure is too much and it won't flush. We thanked God that it wasn't anything serious.
He looks so little in this bed. Such a happy little guy.
The only pictures I can get of both of us, I have to take myself :)

PRAISE REPORT! In the last post I requested prayer for Luke for the nausea and vomiting and his appetite and I have to say THANK YOU JESUS! He has had no vomiting other than the one time in the hospital (which was probably from smelling the hospital food) and he is still eating very well! Thank you to all you who are praying for him. This makes me certain that God is protecting his kidneys and hearing also...Thank you so much. Now I ask all you prayer warriors to pray that the tumor moves away from the portal vessel, so the surgeons can get good margins for resection. We won't need to go back for more chemo until Monday. I hope everyone is enjoying this Fall weather. I'll update again soon..never a dull moment. Thank you for your continued prayers and words of encouragment, it means so much to us.
He just loves to sit up and play with toys. Just like Levi.

He was looking at himself in the mirror for a loooong time. It was so funny.

At the Dr's office. It's hard to keep a baby entertained for 4-5 hours.