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!