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

A BEND IN THE ROAD

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.

Blessings,
Ben

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.

Blessings,
Ben

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.

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!!!

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.

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?

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.

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.