Easter 2010

Emma had a great Easter here at the hospital. This will be her second Easter and her second Easter in the hospital. We started out the day by opening her easter basket, which the easter bunny delivered here at the hospital. We then dyed easter eggs, which she absolutely loved! Then mommy dressed her up in her beautiful yellow and blue dress and she showed it off to all of the nurses and doctors. She cooked daddy and I easter dinner in her kitchen and then all of her family arrived. Jonny and I stepped out and ate our dinner, while she played with everyone. Nana brought her more eggs to dye so she did that and just played the day away. It was nice to be with Jonny and Emma and have such a great day!

She has been feeling great these past few days and her attitude has returned in full force : ) Which is so refreshing, although tiring. She is back to being miss bossy pants and is actually walking by herself every once in a while. She even tried to stand up from the sitting position, and almost did it without help. She is starting to gain a little bit of weight, but the nutritionist would like to see her gain more soon. Her muscles are starting to rebuild and she is really starting to turn around.

She is still on the nutrition through the IV (TPN & Lipids) and is on fluids round the clock. They have decided to stop the antibioitic today, since she is clear of the air in her stomach and looks so well. Her counts are still really low, and she has not had chemo for about 5 days. Her counts have to recover before they can start back up. I asked the doctor if they would make it up, and he said that in this phase of chemo, they usually don't make it up. She only has 2 weeks and 5 days left of chemo and they don't really think it will make a difference. BUT they can't tell me that she won't relapse. I have been worried so much about not finishing out the chemo, but the docs don't seem worried. Even if she finished everylast drop of chemo, they still couldn't tell me for sure that she wouldn't relapse. GRRR!!!! I just want to know the future please!! I told Dr. Meyer this morning that even when Emma is 30 I 'm going to be calling the clinic with every little thing : ) I'm just struggling a little bit with trusting God, even though I know he has had his arms around my baby since the day she was conceived.

Dr. Meyer talked to us about going home this week. As long as they could get her nutrition stable enough and insurance would allow it. Jonny and I were against going home at first only because we didn't think she would adjust well with the kitchen and table since she is still not able to eat. She will not be able to eat again until April 14th. But after talking it over, we decided that we are sooo ready to be home. So, we got the word today that insurance has approved it! Now, we just have to see what her liver levels are tomorrow and we can possibly go home tomorrow or thursday. I'm nervous about going home because she will still be on the IV nutrition, and they will have to train me how to use the pump and administer it myself. Yikes! They also are talking that she will be on it for 20 hours a day : ( I hate that we will have to bring actual medical equipment into the house, but it will sure make Emma so much more comfortable. She will visit the clinic 2-3 times a week to check her counts and her liver level to make sure she is tolerating everything ok.

On the 15th, if everything still looks good, they will start her on a clear liquid diet, and then slowly move to formula. If she tolerates that, then she can start with solid foods again. I can't wait to see how happy she is when she can eat, and when we can eat as a family again! It's the little things like eating dinner together that I miss so much : )

It was a year ago yesterday that Emma was diagnosed with Leukemia. As I go back and read my blog and remember that horrible day, I just cry. I still get sad when she is getting an xray or getting her dressing changed. She is so good and just lets us do our job, this is her normal. But this is NOT supossed to be her normal. Or so I think. As I look back on the past year, I get sad, but realize how truly blessed I really am. I have such a brave daughter who has fought cancer, and won!!! And has done so with so much courage and so little crying or complaining. I am so proud of her and so proud to be her mommy! I look forward to everyday with her!! God has taught me what the most important things in life are. I hope that I can hold onto that forever and forever be changed. Thank you God for giving me the gift of Emma Grace and healing her body!

Thank you everyone who has prayed for Emma over the past year! Jonny and I cannot thank you enough for the continued support you have shown us. We will forever be grateful!!

Please pray this week:

Emma to be able to go home

She will be healed forever!

Adjusting to home and not eating

No long term effects from the chemo

Peace for our family as we worry about not doing chemo these last few weeks

Rest for all of us

Our new baby girl who will be arriving August 16th!

Day 4 of 4 weeks

Yesterday we found out that Emma's blood sugar has been really low in the mornings. They have been keeping track of it for the last five days, and are now concerned. They called the endocronologist to come look at her and to let us know what they would like to do. They decided that they were going to do a heel stick every 4 hours for a 24 hour period. Which meant they did it all through the night. I was pretty nervous about it, but Emma did great last night. She didn't like it, but went right back to sleep. Her sugar was good last night and a bit low this morning, but nothing to worry about. They think her pancreas might be producing too much insulin due to all of the chemo and medicines she has been on. Just another thing to add to her list.

Emma has adjusted very well to not eating and is playing and talking a lot. She gets tired easily though, but its nice to see her play. We are still hoping that the docs will cut her chemo a week short, so she doesn't have to do this for 4 full weeks, but that is still up for discussion. The air in her stomach is still there, but has improved. We are praying it will be gone by tomorrows xray. I will keep you updated as we here more information. Thanks for your prayers!

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