Day1 of 4 Weeks

Today is the official beginning of the no eating or drinking (NPO), antibiotics, and nutrition (TPN) for 4 weeks. Emma has already be NPO for 5 days and we have 4 more weeks to go. Our family has been discussing a lot about possibly skipping the last week of chemo treatment and being NPO for 3 weeks. Since that is the amount of time the GI docs would recommend under normal circumstances. We have run it by our doc this weekend and she will talk to the other oncologists to see if maybe we can re-evaluate in a couple of weeks to see if that is a possibility. As much as it scares me to stop chemo early, I am having a hard time denying my baby her most basic need.

Emma has now learned to say "MO ice pease". Oh MY GOSH!!! When she says it it just breaks my heart. I had decided that she had had enough ice for the day yesterday, but when she said that I had to give her more. Oh boy, I"m in trouble!! And Jonny is even more wrapped around her finger : ) We wanted her to start saying please so bad, so we were trying to teach her the sign language. Well, she didn't seem to pick up on it or didn't want to say it, so we just stopped trying. And then all of sudden she busts out the word and the sign!! What a little smarty pants : )

I stopped by toys r us on my outing yesterday and picked up a toy kitchen and a coloring toy. She has enjoyed both, but still gets tired after playing for just a little while. We are expecting her energy level to pick back up after a few more days though. She has lost some muscle in her arms and legs, but is able to pull up on the crib. But only if it is her idea : ) She can still stand for short periods of time and has taken some steps. We will slowly but surely be back where we were.

We are going to talk to the docs tomorrow about doing x-rays every other day rather than everyday. We do not want all of this radiation in her body as well as everything else. Her x-ray from today has shown no improvement, but is not worse. The air is still there, but it will probably take a couple of more days to go away.

I want to thank John Herren and Hazen Daniels for doing yardwork at our house today! What a great surprise!! They even took our Christmas lights down : ) I probably shouldn't have posted that for everyone to see, but oh well. We are so the griswolds! Thank you so much guys for taking the time to help us out. We appreciate it so much! I also want to thank Gerod and Callie Black for the wonderful dinner on friday! And of course our family who visits everyday and helps us out more than they know! What a great support system we have!

Please pray:

A complete healing of Emma's gut and leukemia

Wisdom for the doctors and nurses who are caring for Emma

A restful stay for Emma and our family at the hospital

Emma as she does not understand why she can't eat or drink

Some Bad News

We found out wednesday that the air in Emma's stomach has come back. After a few days of eating, they took another x-ray and it was back. We were worried because she was having the same symptoms as before. So, they immediately put her back on antibiotics and nutrition, and she is not allowed to eat or drink. They were going to initially do this for another 10 days, but since she has 4 weeks of chemo left, they decided to do this for 4 weeks. That means that she is not allowed to eat or drink anything for for weeks from monday!!! How is this going to be possible?!? They are hoping that with the rest they are giving her gut, it will heal in that time frame. Usually, they see this in premature babies and they go without eating and drinking for 3 weeks, but since she only has chemo for 4 weeks they decided to extend it.

They are still not sure what is causing it, but chemo is a possibility. We are going to start her on one chemo monday and if she tolerates it ok, they will do the other. We will stay here in the hospital for at least 2 1/2 more weeks, and then they will possibly send us home. This will mean that we will have to be sent home with a pump and will have to administer the antibiotics and nutrition through IV. The nutrition runs for 20 hours a day and the antibiotics for 30 minutes every 8 hours. We are not sure if home health care will come do it or if we will be trained. Whatever the case, we will be glad to be home.

The downside to going home is we will have to arrange the kitchen so no food or drink are out for her to see. We will also have to eat in shifts so she will not see any of it. Jonny and I feel so guilty for eating and drinking when our little girl can't. But they say we need to take care of ourselves so we can take care of Emma. Plus, I have another sweet girl growing inside of me.

Emma is extremely sad that she can't eat and asks continually for something to eat. She even loves taking her medicine because it is all she can have. Although, they have allowed us to give her ice chips every once in a while. It is so cute because she says "mo ice". We are taking daily xrays until the air goes away and then we will just look for symptoms after that. We do not want to continue putting all of that radiation in her body. She is still in isolation until they can test for the VRE again, and they won't do that until she is done with antibiotics. She has adjusted to staying in the room well.

If she will let me, I am going to go to toys r us today and get her a little kitchen for the room. She loves the kitchen in the play room up here, but they won't let her go in since she is in isolation.

Please pray:

For Emma as she does not understand why she can't eat or go play outside of the room.

Pray for rest for her as it is very loud up here and she is being disturbed every 4 hours or more.

Pray for patience for Jonny and I as were are exhausted from being in the hospital for 3 weeks.

Pray for rest for our entire family

Pray that God heals her body from the air in her stomach and the leukemia. (We are praying that this air is not a long term healing process for her)


On an exciting note!

We are gearing up for The Tee It Up For Emma Golf Tournament on April 26th. If you would like to know more information, you can find us on facebook at the Tee It Up For Emma Golf Tournament or you can e-mail me at jessjoycewilliams@yahoo.com.

Good News!

The dr. told us today that not only was Emma's x-ray was better, but the air in her intestine was completely gone! Praise God! This was such a major answer to prayer, and God answered it so fast! Emma is feeling better and better everyday. She is wanting to get down and play now and has stood up some. She gets tired fast, but has definetly turned the corner.

The GI doctor said that he is still wanting her to not eat for another 3 days to complete the 10 days of no eating or drinking. As much as we want to feed her, we don't know what the risk is by doing so so soon. Emma has actually adjusted very well to everything, but she still asks for food if she sees it on t.v. She is still getting a few ice chips about twice a day.

After the 10 days, they want to introduce a clear liquid diet along with some liquid supplements. They mentioned today that they would like her to stay for an entire week after they introduce liquids back into her diet. I know why they would want her to stay for a few days, but an entire week!!! We have already been here a week and a half, and we are all going stir crazy! But they are the doctors and know they know what they are doing. Plus, I know they truly care about Emma and just want to do what is best for her.

Emma has a scheduled x-ray tomorrow morning to keep track of her progress. They are also starting to wean her off of the nutrition through her IV. She got some blood today because she is still getting chemo and it is bringing her counts down. She is also scheduled to get a spinal tap on monday, but I still have to ask if that is a go.

We have another praise today. Our friend Mason, who was diagnosed with ALL about 3 weeks before Emma, has completed his chemotherapy treatment today. He got to ring the bell in the clinic and it was such an amazing celebration for his family and friends! Mason is 21 months old and is doing great! He came by to see his girlfriend Emma today and looked so good!

Please pray:
A clear x-ray tomorrow

A smooth transition to the clear liquids

Wisdom for the doctors to treat Emma in the best possible way

A complete healing of Emma's body

A restful stay at the hospital

The doctors will let Emma go home early : )

March 13

Emma's x-rays have shown some improvement since we have been here. It's not significant, but it is a change for the better. We spoke to the GI doctor this morning, and he still believes she needs to have nothing by mouth until all the air in her gut and liver is gone. As hard as this is for us, we agree with him. He said that there is no sure way to know if food or drink will hurt her at this time, and we definetly don't want to take the risk. She could be off of food for about 14 days, but we are hoping it is only about 7-10. Tuesday will be 7 days, so we will start to re-evaluate the situation. Jonny and I are positive that she has taken a turn for the better!

Today she has had a little bit more energy and is wanting to play a little bit. We are also working with her on walking and standing more, so she doesn't get too weak. The doctors are going to increase the calories in her IV nutrition so that shold also give her more energy. Too bad it won't make her feel full : ( She continues to ask for food especially when she sees someone new come in. I guess she figures since we won't give it to her, they will : ) Bless her heart!

I pray everyday that God will just heal her instantly. She has been through so much, and she doesn't understand anything that is going on. We are so close to being done with all of this, so why did this have to happen. Things were going so smoothly! I have been so frutsrated because I just don't understand why Emma has to suffer so much. Then I came across this quote by Max Lucado:

"What you and I might rate as an absolute disaster, God may rate as a pimple-level problem that will pass. He views your life the way you view a movie after you've read the book. When something bad happens, you feel the air sucked out of the theater. Everyone else gasps at the crisis on the screen. Not you. Why? You've read the book. You know how the good guy gets out of the tight spot. God views your life with the same confidence. He's not only read your story...he wrote it. "
— Max Lucado (The Grace for the Moment Daily Bible: Spend 365 Days reading)

God has already written Emma's story and knows exactly what is going to happen. I know I worry so much because I am her mommy and I can't stand to see her going through something like this. But God loves her more than I can even imagine and he is going to take care of her. It may not be the way I would handle things, but he is way is always better. As much as I worry about her, I also have peace about the situation.

Thank you everyone for your prayers! They are working!!

Please pray:

The air in Emma's gut to continue to absorb

The antibiotics to continue working and completely get rid of the infection

For Emma to start to gain weight

Wisdom for the doctors to treat Emma

A complete healing

No delays in chemotherapy

More energy in Emma so she can start walking and playing

A restful stay at the hospital for our entire family

March 10

Today we finally have a plan! This morning Emma had an x-ray and an ultrasound which revealed she has some air/gas leakage in her intestine. The doctors are not %100 sure but they believe she has a infection which is causing her intestinal wall to leak air/gas into the blood stream. The leak is not alarming as of now, what is concerning is what is causing this to happen. The doctors have consulted and believe that a minimum of 7 days of antibiotics should resolve the problem. We are worried as any parent would be, but we are relieved that we have a plan now. Today she started her first day of antibiotics, so we have 6-14 more days here :(

Emma is now NPO which means that she can not have any food or liquid for a minimum is 7 days. This is sad because Emma has learned the sign language sign for "more" so every time she sees food or a cup she signs "more." It is really cute but sad at the same time because she is so hungry. Also anytime she sees pizza or french fries on T.V. she says "mmmmmm." Is it cruel to laugh when she does that?

Emma will be put on TPN for nutrition while she is NPO, I know I am using a lot of abbreviations but I don't know what the letters stand for. TPN is delivered to her through IV so nothing will be flowing through her stomach. The doctors call what we are doing "gut rest" we call it torture.

Please pray for:

The antibiotics to do their job and kick this infection to the curb

The antibiotics to take care of the VRE that Emma has on top of everything else

This infection to begin to heal fast so Emma does not require surgery.

Especially pray that Emma does not lose her interest in eating while she is NPO

Pray for Jessica and myself while we half to deny Emma food for 7 days.

That the TPN does not effect her liver negatively, which is a small possibility.

That we can find some rest here at the hospital