Friday, March 27, 2009


We finished the scans....well we thought we did. Yesterday we met with Luke's oncologist about all the results of his tests. She showed us his CT scans and went over the report with us. There is an area of question in the liver (not for Ben and I, we know he is healed). The radiologist seems to think it is scar tissue, but since his AFP is still elevated they want to make absolute sure that there was no "spillage" of cancer cells into that area. Luke will have a PET scan next week and an MRI the following week. We plan on pulling his NG tube before his scan to see how he does on his own...kinda cold turkey. If he doesn't do well drinking , he will get the tube put back in while he is under sedation. Then maybe we will try it again the following week before his MRI. We just need to be very sure we protect his kidneys. If he won't drink, he has to be on the tube.
Lukey has a little cold right now, but he is doing really well otherwise. I think Levi is suffering from Spring fever. He is bouncing off the walls and making my head spin. He desperately needs some outdoor activity to be in cross country running!!! I had another OB appt last week. The boys are growing well, which is obvious by the size of my belly, and their heartbeats sound good and strong. I have another US next week to get their measurements. My cervix is holding up nicely, just in case you wanted to know. I have entered into the Hot dog and bologna phase of my pregnancy. See I don't go by weeks..I go by cravings...they are always the same. Indian food followed by peanut butter and jelly sandwiches followed by hot dogs and then on to bologna sandwiches. The new one I've been having lately is Hostess cherry pie, which I hadn't had for at least 10-15 years. Weird..and totally not healthy. I also eat a lot of raw veggies, but I do love a hot dog for lunch :) I have spent waaaay too much time talking about food. I feel the urgency to get things in order now...I am also in the nesting phase. Why is this so complicated?
Now I need to take Levi outside to run around and burn some energy. I will keep this updated about the PET scan results as soon as we receive them. We are only expecting good reports!!!

Thursday, March 19, 2009

Updates and Follow-ups

I know it's been awhile since I've updated. I've been in a bit of a funk. I think it's the pregnancy hormones, and exhaustion. Those two combined are the makings of one mean mama...hahaaa. No really. We have been busy with all of Lukeys follow-up appts. He still has to have his CT scans next Tuesday.

Here's a Praise Report! He had his hearing tests on Tuesday. He had to be sedated so they could get a real accurate reading. The Audiologist who has been doing them since day 1 was a little perplexed. She told us "well I can't give you an explanation, but his hearing is better now than it was before." Before they told us he had lost all his high frequency hearing. Now there is just a very mild loss in the highest frequency. God is so good and so faithful.

I had an ECHO done on the twins yesterday. They wanted to check their hearts because of the things I was exposed to before I knew I was pregnant. Everything looks just fine. They are moving around A LOT! Sometimes they take my breath away when they both get to going in there. Tasks are definitely getting more difficult...and my legs are starting to look like a Rand McNally map. Oh the joys of pregnancy. Ben has ordered a multitude of books about having multiples and raising twins and raising all all I need is time to read them :0)

Last night we took Levi to the circus at the Verizon Center in D.C. We were given the tickets by Special Love, which is an organization that does camps and things for pediatric cancer patients and their siblings. It was a great night. We got there for the pre-show at 6...which was a little loud and busy for me...I was starting to feel I had to step out of the arena and away. For the kids it was awesome...they got to be down on the floor with the clowns and performers and everything. It was a show like I have never seen before. I remember going to the circus as a kid and it was in an actual tent. There were clowns and a few animals and performers, but this was like a Vegas show for kids. Originally we were going to take Lukey, but it's a good thing we did not. We left home at 4 in the afternoon and returned at 11 at night. He would not have liked it, so Levi was able to take his little friend Zoey (who he always calls Zoby). They were so cute...they had a good time, but were extremely tired towards the end. I think we all ate too many hot dogs and pop corn...well at least I did.

Zoey and Levi

Ben wearing his favorite hat

Levi was not so thrilled to be trying on costumes.

Down on the arena floor watching some acts.

Levi and his sword.

It was really great to be able to take Levi out where he feels like he's special. He loves his baby brother, but feels jealous sometimes that Lukey gets so much attention. He really enjoyed being out with mommy and daddy. Even though it was past my bedtime and my feet were starting to swell inside my shoes, it was fun. We are so thankful to have no appts until Monday. A nice break. I asked his oncologist when he can get his central line out and she said if his scans all come back clear and his AFP goes down and stays down then he will get it out. He just had another AFP drawn on Tuesday..please pray with us that the results are low..under 10. I'll let you all know how his CT scan goes. Thanks for sticking by us and holding our family up in prayer. Hope everyone has a blessed weekend!

Thursday, March 5, 2009

Chemo is OVER!!!!

After that last hospital visit Lukey has been doing great. His body is still recovering from the chemo and will be for a little while. We are about to enter another few weeks of tests, tests, tests. This is always fun (sarcasm). He will have his ct scans under anesthesia, his gfr (kidney function) scan at Childrens in DC (a nightmare), a chest xray, an ECHO and EKG, and an OAE (hearing test). He will have the in depth hearing test in April now since we could not make it to the hospital in time for his last scheduled one. Thanks to Dulles Greenway owners who collect all the tolls and don't plow the roads....anyways I could get heartburn thinking about that.
Yesterday a physical therapist and a speech pathologist came to the house to do an assessment of Luke. He was so excited to have more people to play with. They were very surprised at his strength and ability. They said he has about a 25% delay in gross motor skills and due to the hearing loss he automatically qualifies for speech therapy, although she was testing his hearing with high frequency sounds and he turned his head towards her every time. I think his hearing is going to be just fine. He needs to work on transitioning into sitting up by himself, crawling, and pulling up. In their opinion he is almost right on track. His social-emotional and spatial skills are all on target. I will meet with them again next week for a full report and recommendations, then if we choose they will continue to come and work with him. He has come a long way and I know he will catch up really fast.

Meanwhile, the oncologist is paying pretty close attention to his AFP. The last one was 67. They just did another one, so I can't wait to see what that one reads. I'm not going to let them scare me with AFP markers. I KNOW HE IS HEALED!

My brother was finally able to go back home. One day late because of the snow storm (that's what they're calling it) I drove is snow deeper than that when I was 16...geez...don't get me started. They said the liver/stomach will resolve itself. They gave him some meds to relax his esophagus and keep it from spasming. He said he is feeling better, I hope this resolves itself very soon. It was nice to see him again, although he was missing his family so much. Lukey has a very special attachment to Uncle Michael. Any time he sees him he just grins and grins...we think they have a divine connection.

Uncle Michael and Levi

Uncle Michael and his buddies

We are actively trying to get Lukey off the feeding tube. He has started eating, he just won't drink. I would love to just go cold turkey and pull the tube. That would put his kidneys at risk. He needs a lot of hydration because of the Prograf, it is very hard on the kidneys. He will always be on it, so he will always need to drink a lot of fluids. Right now they have him off his feeds for 10 hrs a day, but I have to give him a bunch of water every 2 is truly a pain. I either have to run it through the tube or push it with a syringe through the tube. Please pray he starts taking fluid by mouth.

I am eagerly awaiting the arrival of Spring! I am so done with the cold. It will be nice to get outside and go places..well a little...before the boys come. Then I guess I will hole up again inside until Fall. I had always said I would NEVER drive a minivan. Then last summer I test drove the Toyota Sienna...what a God send that car has been. I am so glad we got it, because now we are about to fill it up. I still can't get my head around this completely. I have another ultrasound next week to determine...some words that I can't remember. I think it's to determine whether they are in separate sacs or sharing a sac. I have been feeling very sore and stretched lately. I know I have been doing too much. I don't want to be put on bed I better chill a bit.

Levi enjoys the snow

Though we have finished the chemo, we know we are far from being in the clear. We continue to lift Lukey up in prayer everyday. We are praying for all the scans to come back clear, his AFP to drop below 10 and stay below, his liver functions to remain normal, and for the feeding tube to come out.

Lukey loves to bang on the guitar

There have been days that I could not even find the words to pray, I was just too exhausted and overwhelmed...some days all I could utter was help us Jesus. I know that so many of you have lifted us up in our lowest and weakest times, and for that I am eternally grateful.