Sunday, September 28, 2008

Chemotherapy Round 3

We are in the hospital. Luke had his Cisplatin yesterday and we are just finishing out the 20 hours of post chemo hydration. He has 12 minutes left then he has to have a blood transfusion, then we can go home. It may be very late by the time we get home, but believe me it is way better than staying in the hospital. Luke and I got hardly any sleep last night. The rooms are much nicer this time around. The department has moved into its new floor in the children's wing. The rooms are equipped with a flat screen TV, a Sony PlayStation, and a Nintendo Wii. My only complaint is all the windows. At night, with all the lights off, it is still bright enough to read a fine print book. No peace. Luke has done very well. He threw-up earlier, but he is still eating. I lied about my only complaint being the windows, because I just thought of another. The food. So probably makes peoples recovery time longer. My wonderful husband brought me some dosa today. Yum-o. Four minutes left.
The dogs got groomed today, so I can't wait to go home and give them some loves. They were a little smelly. I love the idea of groomers coming to your house. Pets really have it good. Sometimes I think I would rather see a veterinarian than a doctor. No waiting time, called by your first name, you get scratched and talked nice to, after all is said and get a treat. Yup, they really have it good. I am seriously sleep deprived. Well...they are three minutes late in taking him off the IV. This would not happen if we were at the vets :) I will update tomorrow after his next two chemo treatments. Prayer request: no nausea and vomiting, protection for his hearing and kidneys, continue to eat well, and strength for the day. Love to you all.

Friday, September 26, 2008

Decision Made

I just got off the phone with Luke's oncologist. I only waited ALL day. The decision has been made to proceed with the chemotherapy treatments. Yeah..I know..I took a cry break for the last 20 minutes. They say the tumor is just too close to the portal vessel. I know it's the safest decision for Luke, but watching him go through the chemo is so hard. They want to shrink it even further. She said it's not likely that it will shrink enough with just one more treatment, so we will need to do two more. I pray that God protects his kidneys and his hearing. He has just gotten back to eating as much as he did before. Two steps forward..five steps back. We check into the hospital tomorrow, but should only be there one night. Here we go again...Lord give me strength!

Thursday, September 25, 2008

The Waiting Game

I know I said I would update yesterday, but we had no new news. We went to the appointment yesterday with the expectation of finding out whether or not we would do surgery or chemo. We still don't know. Here is what we do know. The tumor has shrunk to half the size of what it was. Hooray! His kidney function test showed a decrease in function. Not so Hooray. His blood tests look good except his hemoglobin is still low. If it does not come up on its own, he will need another transfusion. The Dr. said to call her today at about 10:00am. We got off the phone with her a little bit ago. We still have no answer. She is getting multiple opinions on the ct scan from Radiologists and surgeons and other oncologists. The tumor has shrunk, but it is still pressing against a large artery (I can't remember what she called it). The surgeon that did his biopsy is looking at the scan today with some other surgeons to see if it can safely be removed. We will talk to the Dr. again tomorrow at 3:00 pm. Until then, we wait. I know she would like to get the tumor out. Due to the decreased kidney function and high frequency hearing loss, I think she does not want to go into more chemo right away. She also said we may be able to just do two rounds of chemo after's possible again. YAY! They are taking their time to be absolutely sure it can be removed without any harm to Luke.

These days at home are so great. Luke is eating great and it makes me feel like we have some normalcy. I know in the back of my head that things are about to change again. I got out all Luke's fall and winter clothes, which is code for Levi's hand-me-downs. I'm getting those washed and put away. I still have to shop for Levi's clothes. Let's see 5 pairs of jeans and a bunch of shirts and sweaters. Boys are pretty easy. Levi has been dressing himself, and I don't say anything when his shorts are on backwards because he feels like a big boy. seems like I've got diaper duty so I will let you all know what happens tomorrow afternoon. Please pray for wisdom and guidance for the Dr.'s, surgeons, radiologists, and everyone involved in making the decision for surgery. Thank you all so much.

Saturday, September 20, 2008

Finished Round 2-Hooray for Luke!

We are finished with round two and had all the tests done this week. Thursday he had a kidney scan and a hearing test. We will find out the results of the kidney scan on Wednesday, but the results of the hearing test were a little disappointing. Luke has lost some hearing. The highest frequency is gone. This should not affect his speech development or anything, but he has four more rounds to go, so we really need to cover him in prayer. It was kinda explained in such terms as, save his hearing or save his life. I believe the Lord can do both. The CT scan we had on Friday was a doozy. We get there super early and he has to drink a contrast. Then we sit for a couple hours. When we finally are taken back, they tell us they need to start an IV. I thought they could use his central line, but apparently the contrast they inject is not compatible with the line. I tell them right off that it is very hard to start an IV on him, send us someone good. Okay, so the lady they send clearly can't find a vein, but decides to stick him anyways. She sticks it in and pulls it out at least four times before saying, "I can't get it they will have to get someone else." My poor little guy is screaming and my blood pressure is sky rocketing. They take us to the recovery area where the nurses say they are "the best" at starting IV's. Happily I believe they are. It was extremely traumatic for Luke and then he had to lay still to get the scan. Luckily he was so drained from the IV fiasco he pulled his blankie over his face and just lay there. Six hours later we arrive home. I can hardly wait until our next CT scan. We will get the results of that scan on Wednesday as well. So Wednesday is the big day. It will be either more chemo or surgery. Surgery is going to be rough, but we think it is better to do it now if possible. Please keep us in your prayers.

Meanwhile, today we took a trip to Great Falls. A beautiful place only 18 miles from our house.
The weather was fine and Levi got to run around. There were lots of people kayaking down the falls. It was a hoot to watch. Luke enjoys being out in the fresh air. It's also safer for him to be outside than inside when his counts are low.

Hope everyone enjoys the rest of the weekend. I will keep you all posted about the appointment on Wednesday. Thank you for your continued support and prayers.

Wednesday, September 17, 2008

Round 2-Chemotherapy Day 17

Today Luke had his last treatment in this round. We got to see the Dr. that specializes in liver cancers. We were very happy to finally talk with him. He took his time and explained a lot to us. He did give us some discouraging news, well discouraging to me anyways. We were under the impression that Luke would only have two more rounds of chemo after he has the surgery. He has to have a minimum of 6 rounds of chemo. It's the treatment protocol for this particular diagnosis, there is no way around it. I didn't know that. He has had two rounds, so he has to go through this four more times at least. I cried some today, but not for too long. The only other option now is a complete healing! Praise God!

At the Dr.'s Office

We have our tests and scans set up. Tomorrow (Thursday) we have a Nuclear Medicine kidney scan and then another hearing test. Friday is the CT scan. Next Wednesday the 24th we will go the the Dr. and review all the test results. From there we will either head over to the hospital to start chemotherapy round 3 or we will prepare for surgery. We would like for him to be able to have the surgery and then the follow-up 4 rounds of chemo. We will be fasting and praying for a good outcome from the CT scans. We want that tumor to be so small, if not completely gone, and far away from any major blood vessels.
We have really enjoyed all these days at home. Being in the hospital really makes you appreciate your own house. We are so happy that Luke has been doing so well. Levi still struggles with all the attention that we give Luke, but we do our best to make him feel very special and important.
Levi is so good with his baby brother.
Levi has his own special kissing spot. No one else can kiss Lukey there.

My sweet baby. He loves to play with his toys.

I will update again after his scans on Friday. If you can, please join us in prayer about the results of the CT scan. We are standing on the promises of God!

Monday, September 15, 2008

Weekend Update

We had a great weekend and week at home. Luke is doing great. To all of you praying for Luke's appetite to increase...thanks!! That is definitely an answered prayer. I can barely keep up with him now. When Luke was first diagnosed my milk supply dwindled to half of what it was. I could not eat and he was not eating, so I stopped pumping as much. Now he is eating every three hours again and I am trying to bring my supply back up. Good thing I have a freezer full of frozen milk, or I'd be in trouble.

Ben spent some good time with Levi this weekend. They went to a high school football game, because Levi loves the marching band. They also went to a cricket match. We went for lots of walks with Luke and enjoyed some fresh air. Wednesday we go back to the Dr. for the last chemotherapy in this round. I am hoping that they have made the ct appointment already, so we have a date set.

Luke is so brave and sweet. He melts my heart with his smile and laughter. Levi keeps him laughing when he wants to cry. I love my boys. We are definitely growing stronger as a family. We don't take anything for granted. When Levi asks me to play cars for the 10th time in a day or watch him ride his bike or play tag...I do it!! If I'm really tired (always), I do it...because life is just too short and they grow so fast. Luke wants to be held ALL the time now. We just hold him, because I can't imagine what he is feeling. I want him to feel secure and comforted and loved. I hold him until my arms are fatigued, and then hold him some more. I wonder if it's how the Lord feels about us. He just wants to hold us close and let us know He loves us. God is so good. I wish you all a great week. I'll update after our appointment on Wednesday.

Wednesday, September 10, 2008

Chemotherapy Day 10-Round 2

Well once again I am behind in my updates. I have been so exhausted lately that I choose sleep instead. Imagine that. I take it when I can get it. Luke has gone back to his newborn sleep habits. We are constantly adjusting. On Monday we had a Dr's appointment to check his blood counts and talk about the feeding tube. His counts were excellent. I was told I could stop giving him the Neupogen shots at home, Praise God! There was no immediate need for a feeding tube, Praise God! It was just your average 4 hour Dr. appt. Today we went for his Chemotherapy day 10. He received an injection of Vincristine which went very well. They took him off the IV fluids, thank God! I was getting so tired of carrying around the pack with the pump and bag. The tubing was too long, we had to always be aware of where it was. The other night I went into Luke's room and he was wide awake in the crib just gumming away on his IV tube. I'm glad he does not need it any longer. Thank you to everyone praying for Luke's appetite, it's starting to pick up. Today he will only be a few ounces shy of our goal. He has done very well and only thrown up a few times. He continues to lose a little weight and the Dr. does not want that. As long as Luke does not run a fever, we don't have to return to the Dr. until next Wednesday for his last chemo in this round. The other night I was praying and reading the Word of God aloud. I was reading in the book of Acts when I just came to a scripture that I know God intended for me to read. Acts 3:16 "...It is Jesus' name and the faith that comes through him that has given this complete healing to him, as you can all see". Then I read Acts 4:10 "It is by the name of Jesus Christ of Nazareth, ...that this man stands before you healed". I marked these down in my Bible. Healing confirmation. God is so good.
Levi started school on Monday. I was so sad that I could not be there to take him to school on his first day. My friend Moby took him. I asked her to get some pictures of him, but he was so excited he just would not be still for any pictures. He was so happy to start school and see all of his friends again. I signed Levi up at the SuperSibs site. It's an organization that supports siblings of children with cancer. What a great idea. They sent him a big envelope with his name on it. He got a ribbon, an arm band, and some temporary tattoos all telling him what a great big brother he his to Luke. He also got a magnet with all the emotions on it, so he can show us how he is feeling. It changes all the time. Sometimes he's sad, 1 minute later he's happy, then he's angry. The thing is, I know he is going through all these emotions and he doesn't really know how to deal with them. SuperSibs sends letters from other siblings and lots of information that is age appropriate. He loves feeling important and getting mail. He is pretty involved in what is going on too. He knows now to wash his hands and use anti-bacterial hand cleaner before touching Luke's hands and face. He loves to entertain his baby brother too. When the home health nurse came here to hook up the IV, Levi had lots of questions for him. He asked about the central line and what to do when the IV was empty. He's a very smart little guy. I guess we are all learning a lot.
In the car going to school

Levi in his new class

Playing with Moby
Thank you for all your prayers, phone calls, encouraging cards, and meals. Lets continue to claim that healing in Jesus name!

Friday, September 5, 2008

Chemotherapy Round 2

Well we got home from the hospital on Wednesday, but I was so exhausted that I did not update the blog. The chemotherapy days 1-3 went well. He received three different drugs in three days. This is usually the toughest time, because the drugs he received are strong. He has had less vomiting and no diarrhea. They let us come home on Wednesday although he has to be on IV fluids here at home. One more thing to add to my nursing skills. Ben is very good about putting the tubing in the IV pump. He's a natural. They are trying to prevent the dehydration he experienced last time. It takes a toll on his kidneys and bladder. We have gone a full 24 hours with no vomiting!!!! Last time he vomited about 4-5 times a day. This is an answered prayer. He still needs to be eating more though. He needs to be taking in at least 24 ounces of breast milk a day. Today he has had 12. Monday the Dr. will determine whether or not to put a feeding tube in. Please pray my boy will start eating again. He used to eat 32 ounces a day. My chunky monkey. He just needs to double what he is eating now. I know he can do it. He won't eat solids either. The texture I think. In the hospital I let him gum a shortbread cookie. He went to town on that cookie. Maybe that's the way to go :)
I'm sad to say that the little mans hair is starting to fall out. The back of his head had been rubbed away. He leaves little hairs wherever his head is. His lashes seem to be falling out as well. That's okay though because it will grow back and he's got good genes. Mommy and daddy have pretty thick hair. Levi is starting school on Monday, and very excited. Ben and I will be going to the Clinic on Monday for lots of blood work and a check-up and then again on Wednesday for Chemotherapy day 10, his Vincristine. Then he will have one more injection the following Wednesday (Day 17) and then a barrage of tests. They will do a CT scan, a kidney scan, a hearing test, liver function, and of course lots of blood work. Then the Dr's will determine whether we can go ahead with surgery or do more chemo. Of course I am not bypassing the believed course of action, a total and complete healing!!! We are standing on the promises of God, and we are not wavering!!! God is in control of Luke's life and this situation.
Thank you to our church family, our neighbors, and Peterites for bringing meals. It is a major blessing. We would all be surviving on PB&J sandwiches if not for your thoughtfulness and generosity. I will update again after out Monday appointment. Everyone enjoy your weekend!!!