Merry Christmas and Happy New Years!

Wow, what a year it has been! It has been a tough one, but so many good things have happened too! Emma finished her chemo treatment in April, we welcomed our new baby girl, Taylor, to our family, Emma has been 8 months off chemo treatments, and she has been in remission for 17 months!!! God has blessed our family! We are so ready to start 2011 and see what wonderful things God has in store for our family : )

Thank you everyone for your continued prayers for Emma. She is doing wonderfully and is so healthy. She has finally hit 21 lbs. She is still small for her age, so the doctors are going to keep a close eye on her to make sure she continues to grow correctly, but they are not worried. Next month they are going to check her IGG levels(the memory part of her immune system) to make sure they are normal. For some reason it never got checked before they took out the central line. This means that they will have to draw blood somewhere other than her finger. I'm not sure how she will take this since she is older and more aware of what is going on. Jonny will be going with me to this appointment to help her through it.

Taylor is growing like a weed! She had a stomach bug a few weeks back and was not eating hardly at all, but ever since then all she wants to do is eat : ) Emma never ate this much, so it is so new to me. She is still not sleeping as well as I would like, but is slowly improving. We have at least eliminated the middle of the night bottle since she is eating so much during the day. We have started rice cereal and vegetables too so that is helping!! Her personality is starting to come out, and she is such a happy baby who loves to cuddle : )

Emma started mother's day out about 2 months ago, and is finally having fun. She had separation anxiety really bad, but the doctors and us decided that it would be the best thing for her since she needs to build her immune system back and socialize with other kids. Taylor will also be starting in January. I'm not sure what I will do with my few hours alone, but I'm sure I will find something : )

I hope everyone has a happy new year's!!!!

Emma is 2!

Wow how time has flown! I can't believe my precious Emma is 2 years old!! She had a great birthday yesterday, and enjoyed being with her family. We started out the day with gymnastics and then lunch at chik-fil-a. She decided not to take a very long nap, and just played the day away. Our family came over last night for Jonny's famous ribs(Emma's favorite) and some Elmos birthday cake. She enjoyed opening presents in front of everyone and showing off all the new stuff she got. She also had a party on Sunday at her Gigi's house and got lots of great toys. She is so special that she is going to have another party next weekend with all of her friends. So spoiled! But boy does she deserve it : )

She has started going to the church nursery on Sundays and is doing ok. Her first time there was amazing, and she didn't cry a tear. Not so much the second or third visit, but we will slowly get her there. She is just so used to being the center of atttention at ALL times and has socialized with adults her entire life. She enjoys other kids, but only if mommy is there. Please pray that she will adjust to the nursery. The doctors would like her to be around other kids' germs so that she can build her immune system. Plus, she needs the socialization with other kiddos. I am also trying to get her into mothers day out a half a day once a week.

She has started gymnastics and is loving it! As soon as we pull up to the building, she get so excited. When we get into the waiting room, she runs to the door to the gym and says "nastics". It is so cute and I'm glad she has found something she enjoys. I'm also thinking of putting her in some music classes because she is in LOVE with music. Her favorite song is "Need You Now" by Lady Antebellum. I know that sounds funny, but since I was obssessed with it and listened to it over and over while she was in the car, I can't expect anything less. As soon as we get into the car she says "Need Now". If you ask her what her song is she says "Need Now". I should probably start listening to some toddler tunes : )


Emma is adjusting to her new baby sister, Taylor, very well. She has her days and moments, but for the most part she is a great big sister. She likes to help change her diaper and feed her. If she is crying, Emma will tell her to hush and then stick the pacifier in her mouth. It is so sweet : )

Taylor is growing like a weed. We welcomed her into our family on August 10, 2010. She was 6 lbs 12 oz and 20" long. She has got a head full of hair that won't stop sticking up. We are enjoying life and enjoying being a happy family of 4. It has been a huge adjustment, but I love being a mommy of 2 beautiful girls.

On the medical side, Emma will be 6 months off of treatment on October 20th. Praise God! She is eating a variety of things(although junk food is still her favorite) and is slowly gaining weight. We have hit 20 lbs, which is a huge acomplishment for her. She has her 2 year check-up tomorrow morning with her regular pediatrician, and will start getting her immunizations next month.

Life is great here at the Williams' household. Jonathan and I are so blessed and are enjoying our "Normal" life with our girls. Of course we worry about the cancer coming back from time to time, but why worry about something you can't control. We believe God has healed our little girl and has great plans for her life. Just look at how many lives she has touched so far and she is only 2!

Please continue to pray for Emma!

Pray for:

NO long term side effects from the chemo
The cancer to NEVER come back
Her growth and development as she is still small for her age
Taylor's growth and development
Our family's health and safety

Also, I would like to ask for everyone to pray for our friend Stevy. She will be receiving a bone marrow transplant soon. Pray that this will get rid of the leukemia and that her body responds well to the transplant.

Our friend Micah, who has been battling cancer for a long time. He has developed leukemia and is not doing well. Pray for the healing of his body. Also, pray for his family as they are going through this.

2 month check-up

Emma had her 2 month off of therapy check-up and it went very well! Everything was clear and she is becoming a healthy 21 month old. The doctor said she was impressed with Emma : ) Emma has gained weight and is eating more and more things everyday. Her favorites are Chick-Fil-A chicken nuggets, mac and cheese, pizza, cheese, and pringles cheddar cheese chips! She is learning new words and things everyday. She loves swimming and swinging in her swing.

We were actually able to travel to Colorado for a week to see my family, and we will be going to Branson, MO for a week with Jonathan's family. It has been so nice to be able to make plans and lead a normal life. We are all getting ready for our new little girl, Taylor, and are so excited. Although, when we ask Emma if she wants a little sister she replies "no". : ) She will be a great big sister.

Jonny and I are adjusting to this "normal" life. It is really hard for us to not worry about the cancer coming back because it is always in the back of our minds. Every little mark on her body is a concern and we just aren't sure what is normal on a baby. We are getting better and working through it together.

Pictures!

End of treatment celebration for Emma!

We are having a celebration for Emma on May 29th to celebrate her completion of chemotherapy! We would love for anyone to come enjoy dessert and fellowship with our family. It will be at Eldon Lyon Park-West pavilion from 6-8 p.m. No gifts please, just the pleasure of your company : ) Hope to see you there!!

Jonathan, Jessica, and Emma

Emma is FINISHED!!

Emma is finally done with chemotherapy treatment! She has been off treatment for about 2 months now and will be getting her central line out on May 24th! They stopped chemo early because Emma's body was not able to tolerate it anymore as she as fighting off a bad stomach infection. But after about a month of no eating or drinking, she fully recovered from that and is now on a regular diet. She is not eating as much as a normal toddler, but has started trying new foods and is eating more than she ever has before.

She seems to be weaning herself off of her bottle and leaning towards an all solid food diet. This is normal for a toddler, but Emma still needs calories from a liquid supplement. It has been hard to see my baby grow up so fast after treatment. She now knows what it feels like to feel great and she is going at full force : ) We are so happy to see her run around like a maniac day after day, although it is very exhausting. Especially since I'm 26 weeks pregnant with our second little girl, Taylor. We have started to work on Emma falling asleep on her own and staying in her crib all night. This has been a very hard process, but she is doing better every night.

My sister is moving out at the end of the month and we will then convert her room into Emma's room. We have already purchased a toddler bed, so that will be another adjustment for her. Plus, I think we will start potty training in the next couple of months.

Emma will continue to see the oncologist every month for the next year and they will monitor her closely for the next 5 years. Please continue to pray for her health! She is still considered high risk because of her age, and her immune system will not be normal for about 4-6 months. They will start with her immunizations in november and then she can start going to the church nursery and being around bigger groups of kids. The docs have already given us the ok to take her the nursery, but we still don't feel comfortable. Please pray that she doesn't have any long term side effects from the chemo and that she will stay in remission for the rest of her life!

Thank you everyone for all your support throughout this difficult year! I will continue to keep you posted on Emma and Taylor when she arrives.

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

May 5th!

May 5th is the day that we expect Emma to be completely done with treatment!!! Hooray!!! Now, this date could change, but we are hoping it will be close to. The end is so near that we can taste it : ) We are really hoping that we will get to take her central line out soon after treatment. We will just have to go over our options with the doctors once her treatment is over.

Emma has been feeling pretty sick the past few weeks. She has had a lot of diarrhea and vomiting and has been so tired and out of sorts. We have been in close contact with the clinic the past few weeks trying to figure out what is going on. Jonny and I have been extremely worried about her because she hasn't been herself. Today, she had a spinal chemo treatment and we got to talk with the dr. in depth about what has been going on with her. Last night we found blood in her stool which could be a sign of something else going on. They are going to run several tests to try to figure out what is causing all of this, and to see if there is a solution.

On the upside, she has been turning into a toddler right before our very eyes. I don't like calling her a toddler because she is still my baby, but I can't stop it. She is now falling asleep on her own (well, most of the time). She is saying about 16 words and is communicating very well with us. She is learning how to color, and loves to put stickers on paper. She is rearranging everything in the kitchen and learned how to unroll the toilet paper : ) Her favorite dvd is Barney's Top 20 Countdown. She enjoys joining Barney in doing the actions to all of the songs. We even take Barney with us in the car so she will not fuss on the way to the clinic : ) If she wants to watch Barney at home, she will attempt to say his name and then bring us the remote control so we can change the channel. She has also tried to stick a dvd in the vhs player to try to get Barney to play.

Eating is still a challenge and her main source of nutrition is formula. She will eat amost anything chocolate and her new thing is doritos and french onion dip. This chemo sure has messed with her taste buds and gag reflex : ( We are hoping that we will find out what is going on in the next few days. We are ready for her to start running around the house again like crazy : )

Please Pray:

The doctors to figure out what is wrong with Emma so she can feel better

No side effects from the chemo (short term or long term)

Time to fly in the last several weeks of treatment : )

An increase in Emma's appetite and weight gain

For our family! It has been a rough year and we are ready for some sort of normalicy

The health of our new baby!

I couldn't sleep tonight, so I thought that by writing out all my thoughts it might clear my head. I have a heavy heart tonight. As Jonny and I were getting ready to go to sleep, I wanted to check a friends caring bridge site. I knew her son had been in the emergency room getting some fluids and stuff and I wanted to make sure he was ok. To my surprise, I found out that he wasn't going to make it. What!?! This was such a shock to me because we saw him about a month ago and he was doing good. He was getting ready to start a different kind of treatment and they sounded positive.

I turned to Jonny and told him that he wasn't going to make it. I read outloud the blog post and I could barely make it through. We both just wept because our minds automatically took us to a place we avoid. We both put ourselves in their shoes. So many emotions struck me all at once. I am so so sad for the family. I intentionally avoid the thought of losing Emma, because the pain of just thinking it is so unbearable. And then I feel guilty for thinking it because I believe with all of my heart that God has healed her, and the cancer will NEVER come back. Then I get angry because I still do not understand why these kids have to suffer so much. I still get angry everytime Emma get sick because she has been through so much and does not deserve to feel bad. She is supposed to be playing and having fun. They are innocent and sweet and should not have to feel like this.

After we wept for a while and prayed, Jonny and I talked about how we were feeling. It was nice to talk about things again because everytime we do, it changes or heart more and more. We talked about how we both got frustrated with Emma today, and how we both feel incredibly guilty. We feel guilty because we both just lost our patience over nothing! I discovered that the reason I feel so guilty leaving Emma, even if it's just for a few hours, is because I am afraid if we do lose her I will have missed spending that time with her. Which seems so silly, but it is how I truly feel. Even though I believe God has healed her, the devil seems to take me back to that place where I doubt. And takes away the incredible peace God has given me. Even if its just for a second, its a second too long.

After we settled down a little bit, we both went into Emma's room and kissed her sweet little cheek and told her that we loved her. I can't wait for her to wake up in the morning so I can kiss those little lips and enjoy our time together.

It is amazing how God speaks to us, even if it is in sad situations like this. Jonny and I realize that we are going to experience situations like these for the rest of our lives. It may be other families or it may be ours. We are not guaranteed anything in life! But it is how we handle the situations that matter. God has called Jonny and I to do something great! We are not sure what it is exactly, but I know it involves the kids and families that are going through the same thing we are.

Thank you for listening to me tonight! Please pray for the Caywood family. They know that God has the situation under control and that their son will no longer be in pain. Pray for their young daughter and her understanding of the situation.

Also pray:

Emma to start feeling better. She has been nauseas a lot and still has VRE. We should have some test results tomorrow to see if the VRE has left her system. She has also lost her appetite quite a bit and lost a little bit of weight.

NO more side effects (short term or long term)

Continued remission

The end of her treatment is late April, pray that everything goes as scheduled so she can start living a normal 1 year olds life.

Pray for Jonny and I. Pray for strength to get through the end of the treatment and to ALWAYS remember that God is in control no matter what.

Home

Emma was discharged yesterday from the hospital, and did wonderfully with the chemo. She was so happy to be home and play with all of her toys. She didn't have much of an appetite in the hospital, and didn't last night either. She woke up this morning sick and vomited first thing. We gave her some nausea meds and she has been sleeping all morning. I'm going to try to keep her asleep most of the day so she doesn't have to feel bad : (

Please Pray:

For Emma's nausea to go away

NO MORE side effects from the chemo (short term or long term)

Day 1 In the hospital

Emma was admitted today for her last in-patient treatment. Although we are very excited to get it over with, we are completely wiped out from the long day! We knew it would be a challenge to keep Emma occupied, but Jonny and I are exhausted. Since she is constantly walking around the room and the halls, it is our job to chase her around with the IV pole. And Emma doesn't give us any warning when she takes off, she just goes : ) We have decided to take shifts so we can each have a break. We would have more visitors, but because of the weather it makes it dangerous to travel. But her Nana and Gramps came up for about an hour today to visit. That was nice!

Emma has completed her first chemo for the day and will be on a rescue drug for 4 hours and then fluids all night. This will clear all of the chemo out of her system so it won't damage anything. Emma usually tolerates this chemo very well, except it will probably make her hair fall out again. I don't mind her little bald head, but I'm so ready to do her hair in pigtails : )

I think we are going to all turn in early tonight! Goodnight everyone!

Walking Days!

Emma is officially a walker! And is very good at it. She just decided to take off one day and hasn't stopped going. We love it! She is also talking non-stop which is just so much fun to hear. She says a lot of words that we recognize, but sometimes she just babbles. She knows what she is talking about, but nobody else can understand. She has blossomed so much in the past month or so. She is doing something new every single day.

She made her first visit to incredible pizza and had a blast. It was very scary for mommy though because of all the germs, and I literally followed her around with hand sanitizer : ) I know she was getting annoyed, but she would stop playing and let me sanitize. I don't think we will be going back there until she is done with treatment because it was too stressful on me : )

She was going to admit into the hospital today for her last visit, but she didn't make counts so we will try again thursday. We are so ready for this chemo to be over and do not want anymore delays. But she does get 4 days of rest from chemo, which is a praise. She is still having a hard time eating most solids, but has some favorites. She loves cheese, popcorn (the white cheddar flavor), captain crunch with berries, apples and peanut butter (she loves to dip dip dip). And when she dips, she has to say "dip, dip, dip." So precious!

After this 5 day stay, she will have chemo through mid-april at home and at the clinic. And then we are finished!! She will still have frequent clinic visits for blood counts, and she will have to leave her central line in for several months after, but no chemo! The doctor told us that the first year is the most risky year for relapse. I was not prepared to hear that, but I have complete faith in God that he has healed Emma and she will NOT relapse.

Please pray:

Emma have a restful and relaxing break from chemo

She will make counts on thursday so she can admit on friday for her last in-patient chemo

No side effects from chemo (short-term or long-term)

Strength for our family to finish this treatment out

Pray for our new baby(for their health and development) Due date is August 21