Update

Just a quick note to let everyone know that we will be checking back into the hospital tomorrow to start round two of the chemotherapy. He will get his Cisplatin, which goes in over a period of four hours and then on Wednesday he will get two more injections. If all goes well, we will go home on Wednesday. Please pray that all goes well. The more we are at home, the better it is for him. We have no peace and no rest at the hospital. It is almost impossible for anyone to get any sleep. Moby arrived safely yesterday and we are so happy. She has prepared little meals for us to take to the hospital, so we have been spared from the hospital food.
I must give special thanks to those of you that have been so helpful with Levi. Sis. Deborah took him to the beach for a few days, and he had a blast! Sis. Paula picked him up and took him to the park and the pool, our neighbors (The Sullivans) took him to the pool and to Chuckee Cheese, The Chavez's adopted Levi for the first week we were in the hospital (I will be forever grateful for that), The Smirnoffs (our other neighbors) are having him over for a play date and arranging meals from the neighborhood, and I could go on and on. We are so blessed. I just get choked up when I think of all the support we have gotten from so many friends. I could never tell everyone thank you enough times to really get across how much I mean it. I just pray the God blesses you all for everything you have done for us.

I prayed a special prayer for all our friends in the path of Hurricane Gustav. I pray it is not a repeat of what we all went through a couple of years ago. I pray a hedge of protection around you. I pray the hurricane weakens before it makes landfall and spares the Gulf Coast from devastation. In Jesus name.

I will update you all tomorrow on Day one of chemotherapy round two. We thank you for your continued prayer while we fight this battle.

Luke Update

Today we had a couple of appointments to go to which pretty much took most of the day. First we went to the Children's Clinic to get his blood counts checked and then to the hospital for a hearing test. Luke has had a really great day today. The results of his blood tests were good. His wbc count was around 400 on Monday. Today it was over 4,ooo. This is really great news because it means I don't have to give him any more shots for a while and now he is no longer neutropenic. All of his other counts look really good also. They had originally told us that he would have to receive blood transfusions throughout chemo, but he has not had to have one in quite a while. We saw one of the other oncologists today, so I was interested to hear what she felt while examining him. She also could not feel the tumor. Luke just lay there, calm and smiling as if he already knows that tumor is gone. We left the office feeling very encouraged.

Then we were off to the hospital for a hearing test. The Cisplatin drug can cause hearing loss, so they will check him after each round of chemo. His hearing test came back perfect. Absolutely no hearing loss in any frequency in either ear. Praise God! Luke has been eating very well and I have not had to give him any anti-nausea medicine today. We are going to enjoy the weekend and then check into the hospital on Monday for his next round of chemo. If he is eating well and keeping food down, we will be able to go home after his next two injections on Wednesday. Then it will just be a matter of a few weeks before they do another ct scan to check the tumor. We believe the report of the Lord!

My very dear friend Moby is flying in on Saturday to help us out for a while. I am so relieved to know that she will be here. Levi adores her and we count ourselves blessed to have her and Rengas as our friends. I may have mentioned earlier that we had hired a nanny to help care for Levi while we were at the hospital and such. Well....she left one day and never came back. She would not even return our calls. We were in quite a bind. So I am ready to roll out the red carpet for Moby. I also want to send out a special thanks to the PeteRites. I think I spelled that correctly. These are Ben's friends from school in Sri Lanka. They have been traveling from Maryland to bring us dinners. Thanks so much! I had the best salmon I have ever had in my entire life the other night. I MUST get the recipe!!! Thank you to everyone who has posted us on your blog and spread the news about Luke. We are incredibly grateful. We ask for continued prayer throughout this next round of chemo and then for the ct scans that will be coming up. To God be the Glory for the things He has done!!

Chemotherapy Day 17

Well we got to come home on Sunday, which was wonderful. We went into the clinic today for Luke's treatment. He did very well and we had to stay for extra fluids. They really don't want him getting dehydrated because it also makes the nausea worse. The Dr. was examining his belly today and the words that came out of her mouth were"I can't feel it". She then said it was because he was crying and she could not get a good exam, but I held tight to those first words "I can't feel it". I also cannot feel it when I press in that general area. We know that it is shrinking because his AFP (alpha fetal protein) test was around 400,000 at diagnosis, and now it is 190,000. This means the tumor is shrinking. Praise God!!

Luke's WBC count is up and down, so he is getting daily shots of Neupogen. Guess who gets to give him the shots at home? You guessed it. ME! They inserted a very small catheter into his arm so I can stick the needle in and give him the shot without sticking him. There is no way I can stick my baby day after day with a needle. I feel like I'm in some kind of nursing crash course. God is revealing so much to me about myself.

On Thursday, we go back to the Dr. to check his WBC count and get a hearing test. The Cisplatin causes hearing loss, so they check them after each round of chemo. Luke will not lose his hearing!! If Luke's WBC count is up and climbing we will start round 2 next Monday. He will have to be in the hospital for it, and the Dr said that after a few weeks of it we can do another scan and see if we can't remove the tumor at that time! I believe it! That tumor is history!!!

We ask for your continued prayer for healing and to help Luke deal with the side effects of chemo and to strengthen him and our family. May the Lord bless you all for everything you have done for us.

At the Dr's office

In the hospital. Mommy kisses.

Uncle John and Uncle Dileep come to entertain and bring Indian food. Yum

His beautiful smile makes it easier for me to get through the day!

Back To the Hospital

On Wednesday I called the Dr. because Luke had been throwing up and not eating well. I was concerned he would become dehydrated again. The office was really busy with sick visits, so they sent us to the ER at INOVA Fairfax. We thought we were just there to get fluids, but Luke spiked a fever and had to be put on antibiotics. After 8 hours in the ER they admitted us. It turns out Luke's white blood count is dropping. This is about the time they said it would start to drop meaning he is Neutropenic. He is at risk for infection right now, so they put him on antibiotics and did several blood tests to check for bacteria in his blood and his central line. They are also giving him shots of Neupogen to boost the production of white blood cells in the bone marrow.

The other thing we are dealing with is constipation. This last chemo he had and the one he will have on Monday cause constipation. They want to solve this problem before his next dose on Monday. Luke has been in great spirits. He has been laughing and smiling at the nurses, unless they come to check his vitals. We got a larger room this time with a crib and two beds! Ben and I don't have to share a small hospital bed this time. The nurses and staff here have been great. We will be here until Monday at least. They will give his next dose of Vincristine here at the hospital and then hopefully we can go home. Levi is missing us once again. Ben goes home during the day and stays with him and then comes back here at night. We feel very blessed to have such a great hospital near us and be seen by such a great group of oncologists. The oncologist that will be here this weekend specializes in Hepatoblastoma, so we are looking forward to talking with him.


We are so thankful for your continued prayer for Luke. Please pray for Luke's healing, strength for his body during chemo, reduced time on chemo, strength for Ben and I, comfort and understanding for Levi, wisdom for the Dr's and nurses, and relief from the side effects (constipation, vomiting, pain, etc.). We cannot even begin to put into words how much you all mean to us. We could not do this alone and we really draw strength from your prayers. We love you all and thank you.

Chemotherapy Day 10

Today we took Luke to The Children's clinic to get his second session of Vincristine. We were there for almost 5 hours. What a busy place that is. When the Dr. was examining Luke she said she thought he was dehydrated, so he had to get hooked up to receive some fluids before getting the chemo. They took us to the infusion part of the clinic. So many children there receiving chemotherapy, my heart broke. Luke did very well though. I held him the whole time and he just sat with me, very peaceful. All of his blood work came back good and they had to check his liver function before giving him the chemo, it was good.

After receiving the chemo, he had to get another hour of fluids. We live about 45 minutes (without traffic) from the clinic and Luke slept almost the whole way home. He is sleeping now and I pray he stays asleep for most of the night. Now is the time when his white blood cell count is going to start to really drop. Levi has a little cold and just wants to hug and touch his little brother. I try to get Levi to understand the situation, but he does not want to. I have a lot of guilt regarding my time spent with Levi. I know he will be fine it just breaks my heart. Well Luke is awake again, so I will say good night. Pray for sleep, peace and sleep.

Homecoming

Well we were finally able to go home. They told us to try to get back to a normal routine. I have a hard time thinking in the old "normal" way. We are embracing a new kind of normal. I think Luke is doing much better at home. He is in familiar surroundings and seems to be more comfortable. He is still having trouble sleeping at night. He will sleep if he is being held, but as soon as he is put down he screams. I just want to hold him tight forever, but I would never get any sleep. Luke is gradually starting to take in more food. He threw up again today, but has been doing better. We have a home health nurse that comes to the house to help me with the dressing changes and flushing the line of the catheter. It's weird to me to have medical supplies in the house and it being necessary to use them. My brain is still trying to adjust. We all took a walk to the park today to get some fresh air and let Levi play for awhile. Luke enjoyed the walk, he was looking all around and enjoying the motion of the stroller.

Tomorrow we go for another session of chemotherapy. This one can be done in the office, so hopefully all will go well and we will be back at home after the appointment. Then in seven more days he will have another. We are keeping a bag packed in the car for unforeseen delays. We had to hire a nanny to care for Levi in our absence. This is all part of our new normal. I catch myself looking back sometimes and thinking how simple life was before. I think about all the silly things that stressed me out or made me upset. Then I shake myself and look forward to the miracles that God is going to perform in Luke's life. We are so blessed, and take much for granted. All we can do right now is cross one hurdle at a time. I pray for the strength to make it over the next one. About every couple of days, I lose it and I sob uncontrollably. It can feel like too much and I can't stand to see my baby suffer. But once I have it out I feel a renewed strength and determination. Luke will be healed.

Daddy and Luke. His smile makes my day!

Levi loves his baby brother, but has a hard time understanding about the germs and the bobo's on his tummy.

At the park. Luke needed some fresh air and Levi definitely needed to run and jump and play.

Thursday, August 14, 2008

We thought we would be able to go home today, but Luke needed another blood transfusion today and he hasn't been eating. He went the whole day today without throwing up, which is really good. The Dr. said as long as he starts eating and keeping it in we can go home tomorrow. Last night Luke would not go to sleep. He was very fussy and crying. I felt like crying also because I was so tired. Tonight he will sleep a deep, peaceful sleep In Jesus Name. After his blood transfusion, he perked up a bit and started babbling and smiling. Transfusions are something he will have to receive throughout chemotherapy.

Today they taught me how to change the dressing on Luke's central line. It is a little nerve racking to have to clean and dress something that goes into his heart. Everything must be very sterile. That only has to be doe once a week. I also have to flush the line once a day with saline and Heparin. The nurses are very kind and tell me that soon I will be a pro at it. I just wish my hands would not shake. I never thought I would be put in a position where I had to do such things. God is revealing my strengths through my weakness. He said that He would never put more on us than we are able to handle. I trust the Lord with my whole heart. He is going to bring us through this storm. Please continue to keep us in your prayers.

Holding Luke. He is only really comfortable when he is being held. Reading to Luke. He liked the pop out books the best.

Nana Monica holds Luke.
Daddy gets a smile from Luke.