Our Updates

We are still awaiting the arrival of the twins. 37 weeks and still gooooooing. My ability to get around has seriously deteriorated. I should not be driving...but I still am. My mom will fly in tomorrow which will give me some comfort...first time she will actually make it in time for the birth, unless I go into labor before 6 pm tomorrow...which I would welcome. At the last US the babies were measuring 6lbs 10oz and 6lbs 6 oz. I feel every one of those ounces.

My very talented friend Amanda took my belly pics. She did a fabulous job.


Lukey's last AFP result was an amazing 4!!!! They took another one recently and we should get the result at his next appt on the 3rd. If it stays the same we can look into getting his central line out. They also want to do another CT scan soon as a follow-up. He is doing so well though. We still have issues with his drinking, but I finally found a cup that he likes and he is up to about 12 oz a day from a cup. Maybe I should just start feeding him dry, salty foods :) He is only on the feeding tube at night now and we just run water with baking soda. He is off the special formula because he is taking in enough calories from food. The baking soda has something to do with his kidneys, which they are keeping a close eye on. The chemo and his current meds are very harsh on the kidneys, so they hope they will recover on their own. That's why his fluid intake it so vitally important. He is crawling and cruising now. I hope he starts walking soon. He is so cute with is spiky hair. It's growing back in...straight up in the air..hahaa. Overall his health is very good and he is a happy boy. We moved him in with Levi, so we could give the twins his room. So far it has worked out well. However, the other night neither of them wanted to go to sleep and I walked in there and Levi was whispering something to Lukey and Lukey was sitting up in his crib giggling. It was actually a precious sight....brothers.


Levi is about to graduate from Pre-K. I am sad that I will miss it. He graduates on his birthday June 5th. Tonight is his open house at his new "BIG" school. Ben will take him and the staff takes them for a tour and a show in the gym and then snacks, and a bus ride around the neighborhood to get them used to riding. I am sad to miss this also. He is getting so big before my eyes. I was worried how he would feel about having to share his room with Lukey, but he seems to like it. For the most part he is very protective of Lukey, but sometimes a little jealous. Lukey loves to hang over the tub while Levi is taking a bath and throw things in. He laughs and laughs. I can't wait until he can get in the bath and splash around too. Hopefully he'll get his line out soon and his ng tube.


Well the longer I sit here the bigger my feet get. Ginormous, as Levi says. I will update this with baby pictures soon!!! My c section is scheduled for June 2nd unless the Lord has mercy on me and I go in sooner. Please Lord...mercy.

A New Season

Well everything has been going good here at the Fernando house. Lukey is doing well. We are still working on the drinking, but he has started cruising along the furniture and just being adorable! His personality is definitely coming out...he loves to imitate big brother Levi, which is not always good. We will find out his AFP result on Wednesday and I think a lot of decisions will be made from there. We pray it all goes well and it has come down. I also go for another US on Wednesday. I hope they are over 5 lbs now and I can stop worrying and let them come any time. I really do want them out...I just don't know what to do after that :) I can barely walk and breathe...and sleep...forget it. I had a wonderful baby shower from the ladies in our church. It was so nice and I just felt so overwhelmed by it all. We had a great time...and I ate lots of cake.

Chelsea enjoying the sun

I was waiting for this tree to bloom...to me it means a new season in our lives.

Today when I went to pick Levi up from school, there was a big double stroller with bows on it and all the kids and their moms were waiting next to it. I almost lost it, but managed to just get watery...these hormones have me so confused. It was so thoughtful and wonderful...again I was overwhelmed! So many have given us items that we might need. We received the cribs, swings, bouncers, clothes, and so many beautiful gifts for the boys. We are blessed indeed!!

My little guys

This weekend will come the rearranging of the house. The twins will take Lukey's room so, where to put Lukey. I want him in with Levi, but with the feeding pump and all the times I go in at night I'm afraid it might wake Levi. Ben wants to move the office and put him in here...I just don't know.

The Fernando House

We are planning on banking the twins cord blood, and the wonderful news is that they are going to do it for free. Through the Sibling Connection, because of Lukey's diagnosis we qualify for it. I think I would have done it anyways, but this is just the best news. I'll continue to keep you updated on the twins status now too. Let's see...Levi is doing great. He really loves to ride his bike and play with the neighbors. I am reading a very good book called "Wild Things...The Art of Nurturing Boys". It is an excellent book if you have boys. It has opened my eyes to why Levi does some of the things he does. He is normal after all :)

Ben's aunt pushing Lukey and Levi riding alongside.

I think we are all about to enter a new part of this journey. I feel like we walked through the valley of the shadow of death, through the hills and valleys and now we headed for something new. Life with twins...four boys...maybe we are headed back to that dark valley...just kidding. We are very excited and look forward to the future and all it holds for us. If we survive the first year...we are doing gooooood!

The Belly

I will update again after we find out about Lukey's AFP. I just know it's all going to be alright. He sees the feeding team at Children's in DC this month, so hopefully we can resolve this drinking issue and get him off the feeding tube. He is five months out from transplant tomorrow..HOORAY!! God has been so good.

Spring Has Sprung

I have been waiting eagerly for the cherry tree outside my bedroom window to blossom. It was just beautiful this year! That was to be my landmark of when things would start to get better and we could start new and fresh. Things have gotten so much better. Lukey is doing great. He is eating with a healthy little appetite. We are still working on the drinking though. I got this stuff called Thick-It that thickens liquids and food for people with swallowing disorders or people who are kinda learning it all over again. I can't say that it works yet, but I'll let you know how it goes. His MRI came back clear...THANK GOD!!! The only thing they are following closely is the AFP. It had come down to 40, so they want to see if it continues to come down or if it will keep fluctuating. We are also starting him on a new oral medicine instead of the once a month infusions he gets, so hopefully he will get the central line removed soon. I would love for him to get that out before the babies come.
This beautiful weather really lifts my spirits. Yesterday we took Lukey and Levi out for a walk. Levi rode his bike and Lukey rode in his little red car. He was really enjoying it. I stayed outside for about 2 hours and my back was killing me. Here's to another day of ignoring Dr's orders! HEHEE. She wasn't absolutely specific about that. Lukeys appointments have become fewer as well, which is great. He is now about every two weeks with the oncologist and every four weeks for transplant. It's really nice not to have to drive to Georgetown so much...I'm beginning to despise the place. One day we'll go for fun and maybe I'll change my mind. Lukeys hair is really growing in now and he is crawling and pulling up on his own. He seems to be catching up pretty quickly.
The twins seem to be doing really well. I had that one trip to the hospital because contractions were two minutes apart. They started an IV and hydrated me and they eventually stopped. I got to go home about 3-4 hours after I got there. I have been drinking so much water now to keep that from happening again...it's difficult with a bladder the size of a kiwi. She told me no more picking up Lukey and to stay off my feet as much as possible. I felt like inviting her over for a day to see what it was that she was asking me to do. Hmmm...don't pick-up my baby who needs special attention. So when he crys and hold his arms up at me..I should just walk away? I understand her reasoning...she did not understand mine. Typical. We are very blessed to have Ben's aunt with us who does a great job with Lukey. I'm just a tad overly protective of him and just can't help myself. I usually sit on the floor now and let him come to me, so I can hold him. Auntie Mercy will come and put him on my lap so I can put him down for naps. It's still not the same, but I'm not ready for these little guys to come out yet. Physically I'm ready....get em' out!!! I'm not ready in any other way! Fraternal twins...I wonder what they will look like...for all of you who are still curious about our L names...we decided to go with Jacob and Joshua. We can call them Josh and Jake...which I will change to Joshy and Jakey and they will hate me for it later on.
I have some pictures to post, but my camera is downstairs and I don't feel like trudging up and down right now :) I have some BIG belly pics too. I have had some unwanted rubbing on the belly lately. Twice at Levi's dentist appointment and once in the grocery store. I don't want to have to resort to violence, but it might get ugly if it doesn't stop. I'll post the pics soon and keep you updated on the AFP levels. I have been a bad girl about updating lately and I blame it entirely on Facebook. I hope everyone had a blessed Easter and as always we thank you all for your continued prayers and support.

Results

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 everyday...like 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!!!

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 boys...now 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 confused..so 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!

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 hrs..it 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 rest..so 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.

Chemo milestone!! And Hospital Stay

Quick update: last Tuesday Lukey completed the most brutal chemo round of this journey! It has been very tough on his body. He was visibly sick throughout and with transplant meds, it was an uphill task to keep the balance (chemo, prograf, etc). Anyway, we thank God for giving strength to Lukey to endure 6 rounds of "bad medicine." So, NO more chemo. YEAH!!! Praise God! And as long as his AFP stays low and he'll be in remission for 5 years, he will be considered medically "healed." We believe in Jesus name that he is HEALED already!! Thank you for your prayers and please continue to pray for him.

Last Tuesday night Lukey was running temp of 101.8 (ER if >99 for transplant and >100.4 for oncology). So, I took Lukey to ER at Fairfax. There were loads of people at 10pm at ER and the wait was excruciating. Anyway, we checked-in to the floor around 12.30am and Lukey was able to get some sleep, finally. We're still in the hospital, as the temp spiked up last night again and his ANC (white blood count) is low. We're praying to get home this weekend.

We'll update you soon. Hope you and your family are doing well. Blessings!