Emma Grace

Merry Christmas and Happy New Years!

2010-12-31T13:21:00.000-08:00

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!

2010-09-30T12:10:00.000-07:00

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

2010-06-23T10:35:00.000-07:00

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!

2010-05-22T20:29:00.001-07:00

End of treatment celebration for Emma!

2010-05-16T20:35:00.000-07:00

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!!

2010-05-14T18:53:00.001-07:00

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

2010-04-06T13:27:00.000-07:00

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

2010-04-01T09:03:00.000-07:00

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

2010-03-28T23:44:00.001-07:00

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

2010-03-27T09:54:00.000-07:00

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!

2010-03-16T19:18:00.000-07:00

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

2010-03-13T11:47:00.001-08:00

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

2010-03-10T15:01:00.000-08:00

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!

2010-02-24T12:57:00.000-08:00

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!

2010-02-14T22:29:00.000-08:00

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

2010-02-02T08:49:00.001-08:00

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

2010-01-28T16:50:00.000-08:00

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!

2010-01-26T06:43:00.000-08:00

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

Getting Caught Up!

2009-12-13T12:24:00.000-08:00

Sorry it has been so long since I have blogged. Things have been quite crazy for our family the past few weeks, and it is nice to be able to sit down and do this. Emma's Great-Uncle John passed away unexpectedly on November 19. It has been very hard on the family and always will be. He was an amazing man who touched each and every one of our lives in a different way. We will miss him so much! It has definetly made us appreciate eachother so much more and not take our family and friends for granted.

Emma has been doing so great! She had a spinal on monday, which made her a little nauseaus. She had to stay about an hour longer so they could run fluids to make sure she didn't dehydrate. She was a little out of it the rest of the day, but by Tuesday she was her normal self. She will continue to do daily and weekly chemo treatments thru April. She has a five day stay coming up mid-January, and then is done after that. We are so ready for this all to be over and get back to normal!!!

Emma is cruising around the furniture like a pro now, and crawls so fast. She has started to stand on her own, but has not taken that first step yet. I'm hoping it will be soon! She has 7 teeth now and is saying some words. She says, "cracker", "night night", "cat", "hi". She also says mama and dada and knows exactly who we are. She can do the baby sign more if she sees something she wants too. She is such a joy in our lives and we enjoy each and everyday with her. If Emma is around, we are always laughing. Her new best friends are her cousins Rachel and Hannah. And her cousin Matthew is trying to teach her how to say Bueno : )

On another note, Jonny and I found out that we are going to have another baby in August. We were not planning on this, but are very excited. Emma is going to be a great big sister! She has no clue what we are talking about when we talk to her about it, but once the baby gets here she will know : )

Please pray:

The Griffis family (Great Uncle John's family)

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

Emma continues to stay in remission FOREVER!

A restful week for our family

A long 5 days!

2009-11-17T22:12:00.000-08:00

Emma has comleted 4 days of chemo and will finish tomorrow and be discharged in the early afternoon. She has done very well and has had no side effects. Her IVIG infusion was great and she didn't have a reaction. They will be doing blood work tomorrow to check all of her counts to make sure she is good to go. We will still keep her in the house most of the time because of the flu, but the dr. said that she is as protected as she can be. She will start her neupegen shots on thursday to help boost her white count.

We are so excited to go home! Emma gets 2 weeks with no chemotherapy and then she will start up again with 7 weeks of outpatient. 5 of those weeks she receives an oral chemo which is taken at home everyday. This chemo usually doesn't cause her to be sick, it's more of an inconvenience because she has to take it before bed on an empty stomach. Well, she is used to getting a bottle at bedtime so we have had to move some things around. Whatever works I guess.

On a different note, Jonny's uncle John Griffis is still in a medically induced coma at presbyterian hospital. The doctor's have done all that they can do and said that the swelling in John's brain needs to come down. We had an awesome prayer with family and friends, and believe that God can still perform a miracle in John! We continue to pray throughout the night for a complete healing of John, just like he did in Emma. God is Good and he will be with us through it all.

Everyone remember to tell your family and friends how much you love them on a daily basis! Stay close to your family and friends, but most of all, stay close to God.

Please pray for:

John Griffis

John's family, pray that God will give them peace

Emma's last day of chemo

No side effects, short or long term

She will stay in remission

A restful 2 weeks off of chemo

Emma's chemo and Great Uncle John

2009-11-15T21:21:00.000-08:00

As Emma was being admitted for her 5 day in-patient chemo treatment, her great uncle John Griffis was across the walkway at Presbyterian Hospital being treated for a head trauma. He was roofing saturday morning and fell off the ladder and hit his head. Luckily his son was there and called 911. He was rushed to the emergency room where he underwent surgery and was stable. After the CT scan this afternoon they realized that there is still bleeding and swelling of the brain. He is currently in a coma and they will repeat the CT scan tomorrow morning to see if there has been anymore damage. Our family gathered around his bed this afternoon and had a healing service. We are praying for a complete healing of John's body. Please pray that he fully recovers from this. Pray for his family who have very heavy hearts right now and are still in shock. It is not easy to see your family member in that condition. Pray that God gives them a peace in this situation. God has already given our family one miracle and we are ready for another one!!

Emma is on day 2 of chemo and is doing very well. She has had no side effects from the chemo and is now receiving an IGIV transfusion to help boost her immune system. This is a 6 hour transfusion and can have the same reactions as a blood transfusion or platelet transfusion. She is 2 hours into it and so far so good! She is getting extremely restless in the hospital because she is not able to crawl around and cruise on the furniture here. She has a catheder and is hooked up to fluids, so she can only go so far without risking pulling those out. She will have 3 more days of chemo and is scheduled to go home on wednesday. Please pray that she continues to have NO side effects from the chemo here or at home. Pray that the Lord protects her brain and organs from long term side effects from the chemo. Pray for a restful stay at the hospital for Emma and our family.

Pumpkin Patch and More!

2009-10-27T07:26:00.000-07:00

Emma has been feeling GREAT this past month, and ever since she started the maintenence phase of her chemo. She has had only 1 day of nausea, which is just amazing. She is developing great both physically and mentally. What a blessing! God continues to hold her and protect her little body. We are thankful everyday!! She is cruising around the furniture like a pro now and is a very fast crawler. We think she will probably be walking by Christmas if not before. She is very vocal now, but we don't understand what she is saying most of the time. She has a love for music, especially worship songs. She even dances when she hears the music and daddy has taught her to head bang : ) I think her new favorite video now is Barney's top 20 music countdown. Thanks Great Grandma Ruby!!

Her appetite is off and on now. She has eaten some solid foods like rice and chex cereal, but still struggles to get it down. But it is a start! Her favorite food is yogurt, especially white chocolate strawberry : ) This is my favorite also! We used to share, but she can now eat the entire 6 oz. Her weight at her last check-up was 15 lbs 6 oz. We can't wait until she is 20 lbs so she can be moved to the forward facing car seat.

We visited the pumpkin patch yesterday and had a blast. She loved the petting zoo(although we did not let her touch the animals). She also went on a pony ride, hay ride, and walked through the hay maze. She then helped me pick out her pumpkin! It was a great day!

She has 2 more weeks of outpatient chemo and then she will be inpatient for 5 days with a stronger chemo. She has had the chemo before, so we expect everything to go great. After that she will have 2 weeks off and then 7 weeks of more outpatient chemo. During that 7 weeks she will get 2 spinal taps. After the 7 weeks she will have 1 more inpatient stay for 5 days and then she is done staying in the hospital!! Woohoo!!! Then she has only 9 more weeks of treatment before she is done for good. WOW! We are looking at the end of April.

Please pray:

Emma's health during this flu season

Her 5 day inpatient stay

No side efffects from chemo

Her growth and development

Our family's health

Happy 1st Birthday Emma!

2009-09-29T21:50:00.001-07:00

Emma turned 1 years old today! Wow! This year just flew by! Our family has so much to celebrate today. God blessed us with such an amazing girl who has taught us many lessons throughout the year.

Emma has been doing great this month. She had an outpatient spinal tap, bone marrow, and chemotherapy treatment last tuesday. She was such a big girl and did beautifully. After her procedures, she had a kidney function test. The test came back good. We haven't received the bone marrow test results, but are confident they are good. She will receive more outpatient chemo tomorrow morning.

We started out the morning with pancakes for the birthday girl. She didn't eat any, but had fun tearing them up and making a big mess : ) Jonathan had a CT scan today on his abdomen for some discomfort he has been having. We are not sure if his kidney stones are causing the problem or something else. The doctor thinks it is partially stress. We hope to get the results tomorrow. After his test we got some chick-fil-a and then the family took Emma to the zoo. She had a great time and got to see lots of cool animals : ) We then came back and I made enchiladas and homeade guacamole. It was really yummy and we had a good time!

Please pray for:

Chemo tomorrow(no side effects)

No infections

Continued remission

Jonny's health

Home Early!

2009-09-12T21:09:00.000-07:00

Well, our little girl has done an awesome job again! Her counts recovered so fast and she has been feeling so good, the dr. let her go home yesterday. Just 11 days after being admitted! We were so surprised and excited since we were expecting to be there for 3-4 weeks! God answered all of our prayers and so much more! Emma didn't seem to have any side effects(other than a little nauseau) and is developing perfectly. Here appetite has recovered too.

We got to come home yesterday evening and sleep in our own bed. She had a little bit of nausea last night, but seemed to be feeling great today. She had a busy day of visiting her grandparents and playing. We are not sure what her counts are, so we are keeping her away from the general public. Jonathan and I have discussed not going out much this winter so we can stay healthy and keep all the flu germs away from Emma.

Not much else going on here. I am trying to figure out a good time to have her birthday party and I really hope it works out. Thank you everyone for your prayers...please keep them coming!

Crawling!

2009-09-10T13:21:00.000-07:00

Emma has a had a great week here at the hospital. She is able to get unhooked from fluids from 10 a.m. to 8 p.m. everyday which makes a lot easier to play and have fun! She has now mastered crawling and is always wanting to move! If she's not sleeping, she is trying to go somewhere. Her being mobile is a bit challenging at the hospital because the floors are so stinking dirty : ( They have provided us with mats for the floor which makes it easier. She also pulled up to her feet and is able to walk around the crib holding on. She thinks she is pretty big stuff : )

Her first birthday is just around the corner and I have a lot of planning to do. Jonny and I decided that we want to throw a big bash when her counts have recovered. We are setting the tentative date of October 4th, but if her counts aren't up we will have to push it back. We have so much to celebrate! She even got a pink car which can be pushed like a stroller. We gave it to her early so she could use it here. We go on about 3-4 walks a day in her cool car.

This hospital stay has been extremely difficult for me. I am getting very bored and restless. Emma isn't sleeping well, which means mommy and daddy aren't sleeping well. When she first arrived here, they did meds and vitals at midnight which woke her up. Then she decided that since she was up she might as well play : ) Now, she wakes up at midnight, even though she's not getting meds, and wants to play. When we finally get her to sleep, it is 2 a.m. or after. Poor little girl is just so out of sorts from all of this. We will be ready to get home.

Her counts are very low right now, so we are being extra careful. She got a blood transfusion last night, and I think her platelets are low so she will probably get a platelet transfusion soon. Even though she is low on everything, she still has a lot of spunk. She is always up playing and talking! It is so refreshing to see her feeling good : ) God is just working through her little body daily! Thank you Lord!

Please pray for:

No side effects from chemo

Counts to recover quickly

No infections

Restful nights sleep

Protection of Emma's body from chemo and other meds

Continued remission

Relief

2009-09-01T14:29:00.000-07:00

Thank you everyone for your prayers the other night! Emma's counts came back clear with no leukemia. It was just a bruise from being so active lately. The dr. said it is perfectly normal to react the way we did because that bruise reminded us of the first time she was diagnosed. She has started her chemo today, and so far so good. This chemo is known for causing nausea, vomiting, mucuous in her eyes all the way down to her bottom, and more. Yikes! Some of these are more common than others, but I sure pray she doesn't have ANY!

She will get this chemo twice a day for 2 days and then we wait for her to recover. She started her eye drops this morning, and hated them! We have to do these every 4 hours along with the mouthwash. This means no sleep for the next couple of weeks : ( I must have slept too much in college, and am now being punished ; )

I will update the blog once her chemo is finished and there is more to report. Have a great week everyone!

2009-08-31T06:12:00.000-07:00

Jonny and I had a scare last night. While I was flushing Emma's lines, I noticed a tiny bruise and bump on her stomach. This was almost like the one she had when she was first diagnosed. Immediately I yelled for Jonny and told him to call the dr. All of the horrible memories came back from that first day she was diagnosed. But this time I knew that it would be considered a relapse, and they would go to a bone marrow transplant next. As we were waiting for the dr. to call, I started to pack our bags for the hospital. I don't know why, but it was my first instinct. Emma's primary dr., Dr. McNall, called back and said that she wasn't worried about the bruise. She said that if her lymphnodes were swollen and she had that bruise, she would be worried. But Emma's lymphnodes were fine.

She said that it would be almost impossible for the blasts to grow that fast, and since her cbc was clear on thursday, she said she shouldn't have any blasts. We felt a little bit better after we heard from the dr., but we just couldn't shake the bad feeling we had. We tried to convince ourselves that if she had a bruise anywhere else on her body, we wouldn't even think twice about it. But we are still scared. Home health care is going to come out today to do a cbc to see if Emma's counts are good enough to admit tomorrow for chemo. So we should know if her blood is clear or not for sure today.

We realized again last night that the worry is never going to go away. God has given us such a beautiful gift which can be taken away at any moment. Why have I been stressing over the smallest things this week!? God taught me last night to stop stressing out about my messy house, finances, and all of other stresses in life, and hand them over to him. He WILL take care of everything, and I can't always have control. No matter what happens, God is taking care of us. He has already shown us numerous times since Emma was diagnosed.

Please pray for:

Emma's CBC to come back clear today

Next round of chemo(No side effects, No infections)

A restful stay at the hospital(3-4 weeks)

Peace for Jonny and I

Emma stays in remission

11 Months Old

2009-08-23T21:58:00.000-07:00

Emma will be turning 11 months old on the 29th! Wow, time has flown. I can't believe I have to start planning her first birthday party already. Before she was diagnosed, I had envisioned a huge first birthday bash with all of our friends and family. Now, we may have to settle for something small. Regardless, we have a lot to celebrate. If Emma's counts are good, we will probably go ahead with our big bash. But if they are low, we may postpone the party or just do something small. If she is in the hospital on her birthday we are going to throw a mini party with the nurses.

Emma's counts have been really low this past week. She will begin another round of chemo as soon as her counts recover. We have a clinic appointment for a CBC to see where they are at. Jonny is going to take us tomorrow which is nice because we will get to spend the afternoon together : )

Emma has had a few episodes of nausea, but all in all she has been feeling good. She is still trying to crawl, and will walk if you are holding on to her. She is able to stand on her own while holding on to the couch or crib. She is talking a bunch too! We wake up to her talking every morning...what a treat for us! There is not much else to report here. Thank you everyone for your continued prayers! Have a fabulous week!

Blood Drive and Next Round of Chemo!

2009-08-13T07:40:00.000-07:00

Jonathan, Emma, and I would like to thank everyone for donating blood on Sunday in Emma's name. THANK YOU THANK YOU! We haven't gotten the final result from the blood bank, but I will let you know. We appreciate your donations so much! I was anemic on sunday, but am going to try to donate later this week or next.

Emma has been in the hospital since tuesday morning getting another round of chemo. She will get chemo through saturday, and we should be able to go home saturday evening. Unless she has to get a blood transfusion, then they will keep us until sunday. She will start her nupigen shots on monday to help her rebuild her white blood cells. When she makes counts, she will admit for the two days of high dose aricie (sp?) and then they will keep a watch on her. This chemo will totally bottom out her counts so we will have to be extra careful washing our hands and hers.

She has done extremely well with this round of chemo, and is acting like a normal 10 month baby. She has hit the stage where she doesn't want to sleep at night, and fought me for 45 minutes last night. I feel sorry for our neighbors : ) We are going to let NaNa put her to sleep tonight just to see if she will fight her. She is not taking very good naps either, but it is really hard on her being in the hospital. It messes up her entire routine. Plus, she is getting 2 chemo's a day which is very hard on her little body.

Please pray for:

A restful stay at the hospital

No infections

Protection for her body from the chemo

Emma will stay in remission

Garage Sale

2009-08-07T05:29:00.001-07:00

It is 7:30 a.m. on friday and we are sitting out in the hot and humid garage having a garage sale. Emma didn't make her counts on wednesday so we are planning to admit on monday if she makes her counts today. We planned on having the garage sale next weekend, but plans changed when we found out that she would be in the hospital next week. So, with the help of Jonny's parents and grandparents we got everything ready. We have already sold our dining room table and some odds and ends. I will update the blog once I know how Emma's counts are today. I hope everyone has a great weekend!

Week 13 of Chemo

2009-08-04T19:50:00.000-07:00

Emma will begin week 13 of her 48 week chemotherapy protocol thursday. She will be receiving Cytoxin and Mesna for 5 days. This is an inpatient chemo treatment and tends to make Emma sick the first day. We will go into the clinic tomorrow afternoon for her pre-admit and then admit thursday morning. She will then get a week off and then start the Aricie (sp?) which is given twice a day for two days and then will stay for 3-4 weeks so they can keep a good eye on her.

She has been feeling well since the last round of chemo. She got a little nauseaus on sunday and had to have a platelet transfusion on monday, but other than that she has been happy and playful. We think she has some sores in her nose from the last chemo because she has been getting minor frequent nose bleeds. I think the main thing that bothers her is swallowing the blood which makes her nauseaus. God has continued to answer our prayers and kept Emma in remission. I thank him for everyday I get to spend with her and for protecting her body from this chemo. We serve a powerful and faithful God!

Jonny's golf clubs were stolen out of his truck last week along with some tools. This isn't the first time we have had stuff stolen, but the nerve of those people to actually steal a man's golf clubs! : ) So, since then Jonny has been eating and sleeping new golf clubs. It has been very important to replace every single club as well as accessories. Today Emma and I went to Golf Galaxy with him to get the last wedge to complete his set. I was also informed that you need more than 1 wedge to complete your golf set : ) He also purchased a new towel, golf balls, hat, and a cute hat for me : ) Now he just has to find time to play!

We want to thank everyone for your continued prayers! Everytime we go out, we hear from different people that are praying for her and our family. We love to talk to everyone and how Emma's story has affected their lives.

Please pray for:

Next round of chemo

A restful stay at the hospital

Continued protection on Emma's body from chemo

Our families health

Emma to stay in remission

Feeling Great!

2009-07-27T13:42:00.000-07:00

Emma just completed another round of chemo last week, and is doing great! She was a little out of sorts on thursday because she had a spinal, but by that evening she was normal happy Emma. She did receive a cathedar which fell out the first night and leaked the second night. So she had 3 cathedars put in in 3 days! She is sleeping in the hospital crib by herself now, so I actually get to sleep on the couch or chair.

She will admit again on Thursday for another round of the high does methotrexate and then the following week for cytoxin and mesna. That treatment will be for 5 days and we will be discharged on the 6th day. After that we will wait for her counts to recover and then she will start another round of chemo. This is a brand new chemo med that she hasn't had yet. It is called high dose aricie (sp?). She only gets 2 days of this, but they are going to keep her for 3 weeks in the hospital. About 20% of children get a blood infection from this chemo and they would like to keep a close eye on Emma because she is so young. After that, our in-patient visits will not be as often or as much.

Ugh! 3 weeks in the hospital!! Jonny and I can handle it just fine, but poor Emma. She gets so incredibly restless being in the hospital for just a few days, but 21 days just might push her over the edge! She has been such an amazing little girl through all of this. She is always so happy. She is very talkative right now and is able to wave bye bye. She will also dance if you ask her to (although she doesn't do it every time you ask). She isn't crawling yet, but can roll where she wants to go and is also very good at scooting sitting up and on her tummy. She is a mama's girl right now and cries everytime I leave the room. It is very sweet, but sometimes I find it hard to leave even when I'm just going to the bathroom : ) Maybe this stage will pass soon. She is sleeping in her crib about 2-3 hours and then cries until we put her in bed with us. As soon as she hits the pillow(she has her own pillow in our bed), she looks at Jonny and smiles and then looks at me and smiles. Then she closes her eyes and falls asleep. Boy does she know how to work us : ) Although Jonny and I don't sleep well with her in our bed because she takes up all the room, we enjoy those moments with her.

Please pray specifically for:

Next round of chemo

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

A restful stay at home

New chemo treatment(no blood infection or side effects)

Jonny and my health

No relapse

PRAISES!!

Emma feeling great

Our health

Emma's development

Another Week at Home!

2009-07-16T07:40:00.000-07:00

Emma wasn't feeling well on the 4th of July, but we got to celebrate twice because they didn't do fireworks until the following friday. She was in such a great mood and feeling well so we kept her up to watch the fireworks. She seemed to enjoy them, but she was so tired that it wasn't the reaction I was expecting. She sure looked adorable in her outfit though : )

She has had a fabulous time at home with the majority of good days. We have taken her out because her counts have been great, but we have to stay indoors because of this horrible heat! Maybe we will get a break this weekend and we can do something outside. Emma isn't able to get her central line wet, but maybe we will just stick our feet in the p0ol!

She had a pre-admit appointment yesterday but her platelets were still too low to start another round of chemo. Her hemoglobin was also on the fall so she may have to have a transfusion tomorrow. She has been a little pale and sleeping more than ususal so a transfusion maybe a good thing. They scheduled her an appointment for tomorrow morning for a cbc to see if her platelets and hemoglobin will recover on their own. She will then go in for a pre-admit appointment on wednesday and a possible admission on thursday. Another reason for the week break is to clear up a bad diaper rash she has had. It has improved tremendously, but they would like for it to be completely gone before starting the methotrexate. This chemo is known for causing mucoucitis which can cause sores in her mouth all the way to her bottom : (

So, we are happy that we get another week at home with our little girl! She was able to go to daddy's softball game and take a picture with the team who has been playing for her. We have also been shopping a few times because she enjoys it so much! Oh no daddy, she may already have a shopping problem : ) I know I do when it comes to buying stuff for her. I keep telling everyone how she has too many clothes, but then I come home from the store with 3 new outfits! I think it is impossible for me to come out of store without buying something for Emma.

She is really trying to figure out how to crawl, but just gets so frustrated. Instead of saying "dada" and "mama" she is just clicking her tongue. She has also developed this laugh that sounds fake, but I think it is just her laugh now. It is precious! We are working on eating more solid foods too. She has a problem with the textures of foods rather than the taste (or atleast thats what I think it is). The nutritionist said to try at least 25 times before giving up on a food. Boy do we have our work cut out for us! My parents are in town this week so she is enjoying spending time with them, and I'm enjoying the extra sleep : ) Poor Jonny has to go to work and is getting no extra sleep. Plus he is having to work in this horrible heat!

We praise God everyday for Emma's health. She is still in remission with no signs of leukemia blasts! I guess I just thought that she would be so much more sick on chemotherapy, but he has protected her little body from that. I'm not saying that she doesn't feel bad, but even on those days I feel him swoop her up in his arms to get her through it. I still don't understand why she has to feel bad, but what parent understands that anyway. Never did I think that I would be able to handle my child being sick with a life-threatening disease, but God has given me a strength I never thought I could have.

Praises:

Emma's remission

Minimal side effects from last round of chemo

Protection of Emma's body from chemo

Prayer requests:

Continued protection of her mind and body from chemo

No side effects from next round of chemo

Her hemoglobin and platelets recover on their own(No transfusion and she can start next round of chemo)

A restful stay at home

Mine and Jonny's health so we don't get Emma sick

Healing of her diaper rash

Protection of Jonny from working in the heat

Nike Women's Marathon to benefit the Leukemia and Lymphoma Society

2009-07-07T21:12:00.000-07:00

On April 5, 2009 we took Emma into the emergency room to check on the unusual brusing she had developed. That morning we found out that she had ALL. In triage our nurse, Cherlyn, checked Emma out and was with us when the doctor brought the news. Cheryln, along with her daughter Camber, have decided to run in the Nike Women's Marathon to benefit the Leukemia and Lyphoma Society in Emma's honor. We would like to ask everyone for their support. Their goal is to raise $3800 each. You can make your 100% tax deductible donation, keep up with their progress, and give them encouragement online at pages.teamintraining.org/ok/nikesf09/ccraig.

This is such a wonderful thing that they are doing to benefit LLS. There are so many wonderful people out there who have and are giving their time to benefit such a worthy cause. We are so thankful for Cherlyn and Camber! Because of people like them, Emma is in remission!

It's Official!

2009-07-03T20:35:00.001-07:00

Dr. McNall called me yesterday to let us know that the final results came back from the bone marrow, and Emma is officially in remission!! Praise God! They didn't find 1 blast in 100,000 cells : ) This is great news for us and such a huge weight lifted off our shoulders.

We have been home for a week tomorrow and are loving every minute of it. Emma had a clinic appointment on wednesday for a cbc and a quick chemo treatment. Her counts have almost bottomed out so she is extremely neutropenic. We are being careful to wash our hands and not take her around huge crowds of people. She has been feeling a little under the weather due to a nasty diaper rash that has been caused by diahrrea. She has had this ever since she got home and it has gotten worse. The drs have prescribed a new medicine that we will try and will hopefully cure the rash. She cries everytime she goes to the bathroom.

We go back to the clinic on monday for another cbc and then on wednesday for a spinal chemo treatment and another chemo called vincristine. Spinals usually make her sick so we will load her up with meds before she goes. She is on 8 different medications at home, three of them are as needed. I have started a notebook so I can keep track of everything that I need to give her and the times I have given them to her so I don't get mixed up. She is getting better at taking meds orally, but still cries because they don't taste very well.

She now has her two bottom teeth in and she makes this clicking sound when she rubs her tongue on them. It is so cute. She also has said "mama" a couple of times, but it is still kind of mumbled : ) She had a good day today and we expect better days once her counts recover. Thank you everyone for checking up on us and I hope you all have a great 4th of July!

Emma is in Remission!

2009-06-26T02:06:00.000-07:00

Emma started her next round of chemo on tuesday of this week. We were very nervous about this round because the chemo medicine's are very strong, but Emma has handled them quite well. She may have had a tummy ache from time to time and loss of appetite, but other than that she has been great! Well, great considering what she has been through. We also got the test results back from the bone marrow and they can officially say Emma is in remission. Praise God!!! Our prayers were answered and have been since the day Emma started chemo. They did send it away to another lab for a closer look and we will get those test results back in about a week.

Tuesday morning we arrived at the hospital at 8 a.m. We wanted to be there as early as possible so they could get started on her procedures. Every time she has a procedure she has to stop eating at midnight the night before, so you can imagine how cranky Emma is when she realizes she's not getting a bottle first thing in the morning. Her spinal chemo treatment, bone marrow biopsy, ppt test(they had to draw blood from somewhere other than her line), and echo cardiogram were all scheduled for 9 a.m. Well, by the time the chemo arrived and the doctors were ready, the procedure started about 10 a.m. Emma was very patient and even took a couple of short naps while she waited. They were also scheduled to put in a catheter a little bit later in the day while giving her medicine that would help her relax.

The procedures went great and they called us in to help with the echo and blood draw. They stuck her 2 times and were unable to get a sample because her veins are so small. So we decided to try to draw it when we did the catheter. She was a little upset when we had to hold her down for the echo, but after about 5 minutes she fell asleep and they got what they needed.

When we arrived back in the room we gave her a bottle and she was starving! We had given her anti-nausea meds right before the procedures and she had no problems. Just a couple of minutes after arriving back in the room, they set up to do her catheter. The medicine to help her relax is oral so we had to wake her up to give it. Of course she wasn't happy about this, but we got the medicine in and it worked right away. First, they tried to draw blood and had no luck. They decided that they could try to get a sample through her line, but sometimes the test results are skewed because of the medicine they use to lock the line. But we all decided that this would be the best option for the time being. The ppt test is to check to make sure her blood is clotting the way it's supossed to.

Next, was the catheter. It went in fine and Emma did great, but we have never really had any luck with catheters since we've been here. Wednesday afternoon the catheter snapped and we were going to have to insert a new one. I begged the doctors to just leave it out and I would change her diapers every hour so she wouldn't get diaper rash. At first they told me no, but after some more convincing they decided to give it a shot. So, I have set my alarm for midnight through 7 a.m. on the hour every hour to change her diaper. Although, this is not my most favorite thing to do, it's better than watching them put another catheter in and Emma having to deal with the inconvenience. I just hope I can do a good enough job and keep her from breaking out! She was scheduled to have a deep muscle shot also which is a long lasting chemo medicine. So, she had 6 different chemo meds all in one day along with 2 procedures, an echo cardio gram, a catheter, and 3 attempts at drawing blood which failed! At the end of the day Emma was still smiling. It just shows you how innocent and forgiving children are. What a blessing God has given our family, to have the honor of knowing and caring for such a beautiful and strong little girl. She has taught me so much these past few months and I have heard numerous times how her story has touched the lives of so many people.

A part of this round of chemo is taking a prednisone(a steroid) which helps the other chemo meds work better. This medicine is very bitter tasting and has always made Emma vomit. They can give it through the IV at the hospital, but at home we have to do it orally. So we decided to try it orally again this time to see how she would handle it. Well, she has thrown it up 4 times! We tried to mask the flavor with orasweet, chocolate icecream, and hershey's chocolate syrup but nothing has worked. So thursday afternoon the doctor called in a prescription for the name brand steroid which is supossed to taste better. We had to use our pharmacy because the hospital pharmacy doesn't carry it for some reason. We were so nervous to give it to her, but if we couldn't get it down her orally, we would have to stay at the hospital until we succeeded. I tried this steroid by the way, and it almost made me sick and I'm not doing chemo. We tried to mask this flavor with marshmellow cream and it worked! She still shivered when she took it, but she has had 2 doses and kept them down. What a relief! Now we can go home : )

Jonny and I are both exhausted because we have gotten very little sleep at the hospital. Emma has had a more restful stay this time and is sleeping through the night and even sleeping through most of the diaper changes. We have two chemo treatments today and should be on our way home early saturday morning unless something changes.

Praise God for:

Emma's remission

Please pray specifically for:

No infections

No diaper rash

No side effects

A restful stay at home

No relapse

Another round of chemo

2009-06-21T17:50:00.000-07:00

We have really enjoyed our time at home with Emma. She has an appointment tomorrow at 11 a.m. to see if she will make counts in order to start her next round of chemo. We were in on tuesday and friday of last week, but she had not produced enough white blood cells and platelets to continue on.

Her white blood cells have been high enough for us to take her out, and boy did we take advantage of it. We went out to eat a ton and of course shopping. Today we went to church. It was so nice to see everyone that have been praying for Emma and to thank them. We also made a trip to great uncle Jim's church to show Emma off there.

Jonny just got back from a golf trip this weekend and has enjoyed his time with Emma on Father's day. She has been such a delight these past two weeks and we have had so much fun! We are expecting to admit to the hospital on tuesday for 5 days of chemo and then home. We will be back in the clinic at least twice a week for check-ups and for more chemo, but those should be out-patient.

Please pray for:

next round of chemo

no side effects from chemo

a restful stay at the hospital

a good result on the bone marrow test

The Clinic Today

2009-06-12T20:34:00.000-07:00

Emma had an appointment at the clinic this morning to get some blood work done. The CBC showed that her AGC(good white blood cells) are very low at a 7 and her platelets are 16(normally they should be 150+). This was no surprise to us because it took her counts awhile last time to recover. We have another appointment on tuesday afternoon to see if anything has changed. If she has met her counts then we will admit on wednesday for 5 days of chemo.

The nurse informed us today that we may not have to stay in the hospital for 3 weeks this next round. Another baby around Emma's age just went through this same round of chemo, and they let him go home and do outpatient chemo after the first week. They said he did great and they would like to try this with Emma as long as she is feeling well enough. GREAT NEWS!!! We love being at home and Emma loves it even more : )

She has been such a happy baby since we have been home and has only been sick a couple of times with minor nausea. Her new favorite thing to do is watch her uncle Jason's dog, Jade, chase a laser light. She laughs so hard which makes everyone around her laugh as well. We all have such a great time. God has been so good to our family. He brought a beautiful baby girl into our lives who brings us so much joy. So much more than I could have ever imagined! Thank you God for all the wonderful blessings you have given us!!

Emma being mobile is not so far away. She is showing so much interest in getting down on the floor, and she can even get up on her knees. But her arms are not quite strong enough. She can get on her hands and knees for just a split second. She can stand on her legs and hold onto the couch for a few seconds, which makes me think she may skip crawling all together. I'm not sure what she is going to do, but I just know that she will wake up one day and start moving. Yikes!

Please pray specifically for:

No side effects

No infections

Next round of chemo

Emma will meet her counts on tuesday so we can get the next round of chemo over with

A restful stay at home

A complete healing

A clear report on the bone marrow test

So Nice to be Home

2009-06-07T18:50:00.000-07:00

This is our second day at home and we are loving it. Emma has had a great day and is sleeping now. Jonny and I were able to go to church this morning which was so nice. It has been almost 2 months since we have been able to go to church! Plus, I actually got to go grocery shopping today! We now have food at our house!!

Emma got her first nupigen shot tonight and did really well. She also ate carrots and applesauce which is a huge step for her. Things are looking great today and we expect the same all week. We have an appointment at the clinic for a CBC(bloodwork) and a check-up on tuesday morning. Please pray that everything goes well!

A Great Week!

2009-06-06T07:07:00.000-07:00

Emma will be discharged today for a much needed break at home. She received 5 days of 2 different kinds of chemo medicines and she did fabulously! She had a stomach ache the very first day, but after that she did not have any side effects. She was such a joy everyday just playing and trying to figure out how she is going to get around. She has started to get on her tummy from the sitting position, so I know it is just a matter of time before she is crawling. I'm excited but at the same time nervous because it is hard to keep a crawling baby entertained in a hospital room. Especially when she will be hooked up to an IV.

I celebrated my 27th birthday on wednesday and the only thing I could have asked for is Emma feeling great. And God answered my prayer. He has been so good to us and especially our Emma. Jonny brought me dinner from Bravo's and instead of a cake I got Cuppies and Joe : ) I got to spend the entire day with my family!

Emma said her first word on thursday. As much as I wanted her to say mama first, she actually said "dada". Jonny wasn't here at the time, but she has said it many times since then. This made Jonny's day : ) She has been entertaining the entire family with her continuous talking and playing all week. She woke up this morning at 5:30 and talked until 6 before fussing because she was hungry. Jonny and I just laid in bed and listened to her talk as well as the nurses right outside at the nurses station.

We should be discharged late this afternoon and will have to return to the clinic twice a week until her counts recover. Her AGC (good white blood cells) have to be at least 755 and her platelets 75000. We will start her nupigen shots tomorrow, which will help her rebuild her white blood cells. We will be home at least a week, maybe more depending on how quickly she rebuilds everything. We are hoping for longer, but we also know how important it is to start the next round of chemo too. As far as we understand, we will be in the hospital for 3 weeks and then home until she rebuilds enough to start chemo again. We are actually starting the entire process over again.

Things may change but that is to be expected. We are trying hard to make this our normal now, but I am still struggling. Jonny has started work regularly so he is getting out of the hospital which has been good for him. He misses Emma a lot, but gets stir crazy just sitting around in the hospital. I am also going stir crazy, but am trying to figure out some things to do to keep me occupied. I have started taking Yoga classes, but am finding it hard to get away from the hospital. It will definetly be easier at home.

Please pray specifically for:

A restful stay at home

No infections

No side effects

Next round of chemo

A complete healing!

Recharged!

2009-05-31T16:18:00.000-07:00

Emma's sores in her mouth started to get worse on Friday, which was actually her 8 month birthday. We wanted to celebrate by taking her to the zoo and her counts were up so we wanted to jump on the chance. She had a pretty good morning and seemed to be feeling well except for the bleeding from her mouth and nose. The drs prescribed some pain meds so we felt like we had it under control.

Before we went to the zoo, we went to the home health care office to get her dressing changed. I will hopefully learn how to do that soon! Emma acted like she wasn't feeling well so we gave her some pain meds to help her out. We thought by the time we got to the zoo she would be feeling good. She fell asleep on the way and slept about 30 minutes at the zoo. When she woke up she wasn't feeling well and wanted to be held. That wouldn't be a problem except that she was in the sun and she couldn't get a sunburn. To make a long story short, we ended up leaving early because she didn't feel good at all.

That wasn't the day that I had imagined for my little Emma Grace, but I had to remind myself that this is our new normal and things aren't going to go the way I plan most of the time. Since her sores were getting worse her eating was getting worse. She refused to put the bottle in her mouth and we had to practically force her to eat so she wouldn't get dehydrated. We monitered her closely and realized that she wasn't making enough wet diapers.

We called the dr. on friday night about 11 and he said to bring her in so they could check her over. We had to go the emergency room where they got us right in. Her vitals looked good, but she was a bit dehydrated and her platelets were extremely low. This would explain the bleeding. They said that they would recommend that she stay the night for observation and she could receive platelets and fluids at the same time.

We decided to stay the night so Emma could be more comfortable in a room rather than the emergency room plus we were worried. We finally got into a room at 4 a.m. and fell asleep about 5. Emma had slept most of the night so she was ready to wake up at 8 a.m. Jonny and I were not! The platelets and fluid did wonders for her. She was like a new baby! She was discharged at about noon, and we were home again.

Emma was recharged!! She has been eating fabulously the entire day today, and has been in a playful mood. We will go to the dr. tomorrow at 11 and if everything is okay they will admit us on tuesday for 5 days of chemo.

Please pray specifically for:

A good nights sleep for Emma and us

No infections(her counts are way down right now)

No side effects from this round of chemo

A good restful stay at the hospital

A complete healing

Emma holds on to her platelets

A longer visit than expected!

2009-05-28T13:13:00.000-07:00

Yesterday morning Emma woke up with sores in her mouth. This is a common side effect from the chemo, but since she did not get them last round we didn't think she would get them this time. The sores cover the inside of her bottom lip and are very painful. We took her to the clinic yesterday because she would not keep her pain medicine down. They checked her out and everything looks good except her sores. They do not want to start another round of chemo until they have cleared. The next chemo medicine that she will get is going to bottom out her blood count and she will be more susceptible to infection. If she has open sores in her mouth then she is more likely to get an infection.

The doctor does not want us to come back to the clinic until monday, and possibly admit to the hospital on tuesday. Although we are happy to be home longer, we know that she needs this next round of chemo and we just want to get it over with.

We didn't make it to the zoo yesterday, but we are attempting to go tomorrow for her 8 month birthday. We figured since she is going through so much that we would throw her a mini birthday party every month. I bought her the cutest sun hat and flip-flops for her trip to the zoo! I will take pictures : )We will only go if she is feeling well though.

Please pray specifically for:

Her sores to heal quickly

No more side effects

A restful nights sleep for Emma

Sleep for Jonny and I

No infections

A good fun day at the zoo

A complete healing

Home sweet home!

2009-05-26T08:34:00.000-07:00

We arrived home yesterday afternoon after a long day at the hospital. Emma's chemo level was perfect yesterday morning, but her hemoglobin and platelets were low. So, they had to do transfusions which took about 5 hours total! When we finally got to leave we were so happy!

Emma has been kind of sick the past couple of days. Yesterday she was nauseas and extremely tired and restless. Last night she couldn't keep a lot down and didn't go to bed until almost 2 a.m. I just couldn't get her to calm down. I think it is a combination of nausea and teething, but I'm not sure. She has had a better morning and already enjoyed a visit to grandma's house.

Her AGC is 7000+ so her immune system is great. We asked the dr. if it would be okay to go to the zoo, and she said that would be a great idea. I think we are going to go tomorrow when it is a little bit cooler and hopefully no rain! Right now Emma is taking a nap and then we are just going to relax for the rest of the day. We are scheduled to go to the clinic on thursday for her pre-admit check-up, and then we will admit to the hospital on friday morning. She will have 5 days of chemo, and then we will hopefully get to be home for 3 weeks. That is as long as Emma does not get sick.

Please pray specifically for:

No infections

No more nausea or any other side effects

A restful stay at home

A good day for the zoo tomorrow

No side effects from the next round of chemo

A complete healing

Sleep for Jonathan and I

Another day at the hospital

2009-05-23T12:26:00.000-07:00

I forgot to tell everyone the prayer God answered about a week ago when we were worried she would have to have surgery for the abcess. The ultrasound went great and it was all clear!!! God has not failed to answer all of our prayers and we are so thankful. We got to go home that day, and it was our first time we got to go home.

Emma had a long busy day yesterday. She had her spinal tap at noon, and then they knocked her out to put the cathedar in. She was asleep most of the day yesterday and slept through the night. She had a bout of nausea, but after some good medicine she has done great! They scheduled us to come in at 9 a.m., but didn't get the spinal done until noon. This is a problem because they won't let Emma eat after midnight the night before. She was able to have clear liquids up until 6 a.m. but when I woke her up she gave me a mouthful! So I put her back to sleep with nothing in her tummy : (

They called us down for the spinal, and then they realized they had the wrong dose and needed to reorder. So, we waited a little bit longer and got it done. Then about an hour or so later they gave her medicine to relax her so they could put the cathedar in. Well, it knocked her completely out : )

Today is a relaxed day. Not a lot going on just waiting for the chemo levels to clear. They will give her a rescue drug to also help flush the chemo out. The doctor said that we could possibly go home tomorrow if the level is good.

Please pray specifically for:

The chemo to flush quickly

NO side effects

No infections

A restful nights sleep for Emma

Enjoying our time at home!

2009-05-19T20:48:00.000-07:00

We have been home since yesterday afternoon. Emma cleared the chemo extremely well and has been feeling good. She had a little bit of nausea this morning, but I called the doctor and they prescribed some meds to help her out. We had to make a visit to the clinic today because when I had trouble flushing and heplocking her central line. They said we needed to come in so they could get the clog out.

They did a cbc and Emma's counts were great! She is producing her own platelets now which are almost normal and her agc was 7700. This means that she has a normal immune system and is able to fight off infection. This makes our trip home even more enjoyable because we are not stressing about her getting sick. She can still get sick, but not as easily. Since we went to the clinic today and she is looking well, we won't have to go back on thursday for her pre-admit exam.

Today Emma and I were playing with her toys on her quilt and she leaned forward and fell on her hands. She then pulled her legs around so she was on her tummy! I was so excited I thought she was going to start to crawl!! So, I tried to put her toys further in front of her so she would have to reach. Well instead of catching herself with her hands, she face planted into the ground. She got the saddest look on her face and just started crying. I felt so bad because I made her reach so far, but I just want her to crawl so badly. Oh well, it's a step forward : )

We will go back to the hospital on friday morning for another round of chemo. Please pray specifically for:

Emma to continue to feel well

No side effects from chemo

A restful stay at home for all three of us especially Emma

No infections

A complete healing, no relapse!

Methotrexate!

2009-05-16T15:27:00.000-07:00

Emma is going on her second day in the hospital with her second round of chemo called methotrexate (sp?). She has tolerated the medicine well so far and we think she will do just fine. Her cathedar was not working properly so they had to put another one in. So far it is working ok, but we still have to change her about every 2 hours. This chemo is very toxic for Emma and ourselves, so we must wear gloves when we change her. We also have to make sure we don't let it sit on her skin too long.

She should be able to flush the chemo out within 48 hours, but in some cases it takes longer. We are hoping to go home sometime monday, but nothing is set in stone. I am attempting to make this new lifestyle my "normal", but I am having a tough time. While at home I had a lot of plans to get everything organized and cleaned up. Since we are having to come back to the hospital so often, I wanted to have bags ready at all times. When I first tried to get some things done I put Emma in her jumpy seat right in front of Praise Baby. Before she was diagnosed she would sit for at least 30 minutes while I worked on other things. Now as soon as she sees me or even hears me she fusses until I pick her up. Being in the hospital has really affected her, and the fact that I was by her side 24/7 for 36 days. I did take a few breaks, but her and I have become very close. So, I left my house a mess and was not able to organize.

While I was praying and telling God how much I was stressing out, he told me to calm down. This is our "normal" now and I need to just go with the flow and deal with it. So, everyday I am attempting to just go with the flow. Jonny has been extremely understanding with me and hasn't put me in my place yet : )

The game plan for the next few weeks go something like this. If we get to home on monday we will more than likely come back to the clinic on thursday to see if her counts are okay to start chemo again. If it is a go, we will admit on friday and start the chemo. She will get the same chemo she is getting now, and we will discharge as soon as it has flushed through her system. Once we discharge from that we will come back for 5 days of chemo. Hopefully everything goes well and we will get to go home after the 5th day. This all depends on Emma's counts and no infections. After all of this we will start from the beginning. We will be in the hospital again for 3 weeks while she does chemo. We are hoping that she will not get an infection again so we can go home after the 3rd week. This is all tentative and depends on how well Emma reacts to everything.

She is having a good day today and is taking her morning nap right now. Please pray specifically for:

No side effects from the methotrexate(sores, nausea) and long term side effects

No infections

She flushes the chemo out so we can go home monday

A restful night sleep for Emma

A complete Healing

Back in the hospital

2009-05-15T16:42:00.000-07:00

Emma was admitted this morning for her next round of chemo. She had her spinal tap around noon and they also tried to insert a cathader. This did not go very well and it took 5 nurses before they could get it in!! She was not a happy camper at all and has slept most of the day. I can't say I blame her either.

We haven't heard about her counts yet, but she has had a high dose of chemo which will be flushed out of her body for the next 24 hours. We then have to make sure the medicine level is appropriate before we are released from the hospital. I will keep everyone updated once we know more information.

Please pray specifically for:

No side effects from this medicine

No infections

A restful nights sleep for Emma

Good results from the spinal tap-No Leukemia

Home

2009-05-13T19:54:00.000-07:00

Today is our second day home and we are loving it! Emma has been feeling good and we had a restful nights sleep last night. Well, Emma and I did : ) Jonny said that we took up the entire bed and he had no room. Emma slept about 4 hours in her crib and then the rest of the night in our bed. I think she gets scared when she wakes up because she hasn't been home in over a month. My wonderful friend Diana got me a raindrop massage tomorrow morning that I am really looking forward to.

We go to the clinic tomorrow to check her blood counts to see if we can start the next round of chemo on friday. If everything is a go we will check into the hospital friday morning and start chemo that evening. The chemo medicine that she will be receiving is very toxic and will have to totally clear her system in order for her to go home. It could be anywhere from 48 hours to a week.

Please pray specifically for:

A restful night sleep for Emma, Jonny, and I

Emma's counts to be good so she can start the next round of chemo

A short stay in the hospital this round

No or minimal side effects from the chemo

No infections

A complete healing

2009-05-11T19:54:00.000-07:00

~Emma's Shirts~

We have made t-shirts to help raise awareness of Infant Leukemia. They are $14.00 a piece and you can pay by credit card or give the money to Dawn Williams or Allison Williams by check or cash. Credit card would be the easiest for us since we would like to order them after we receive the money. You can send your credit card info to jessjoycewilliams@yahoo.com. The price of the shirts are at cost and this is not a fundraiser. We just want to raise awareness for this cause and remind people to pray for our precious Emma Grace! We would like to order them by the end of the week, so just let me know. I have attached a picture of the t-shirt for you. They also have children's sizes

Mother's Day!

2009-05-10T19:46:00.000-07:00

Today was the perfect mother's day!! Emma woke up smiling which is the best gift I could ask for. We even made her laugh which is the best sound in the world. She and Jonny got me my favorite Godiva chocolates and two sweet mother's day cards. But my favorite part about the entire day is I got to spend it with my two favorite people in the world. The doctor also said during rounds that she can't officially say it, but she did say that Emma is in remission!!!!! It is still early, but we are very encouraged by her words. We will let you know when this is actually official too : )

Emma hardly fusses anymore except when she is being messed with. She is very tired of having her blood pressure, temperature, and oxygen intake taken every four hours. On top of that she has to take some medicines orally which she hates. Other than that, she is the happiest baby. From 1 to 5 every day the nurses unhook her from the fluids and let us take her on a walk and play in her jumpy gym. Her counts are up to 4800 which is normal for a baby. She is now able to fight off infection just like everyone else. This has definitely eased our minds about her getting infection and we have become a little more lenient about taking her out of the room.

We are anxiously awaiting the ultrasound tomorrow to see if the abscess is still there. We are confident that no matter what they find she will be fine. God is holding her so tight right now and has given our family a peace about the entire situation. If the ultrasound is good we will get to go home tomorrow thru wednesday or thursday. I'm going to beg and plead for thursday though : ) Then they will start the next round of chemo.

The next chemo medicine is a very toxic medicine and will more than likely require Emma to get a chathedar. We would like to avoid this at all possible, but they don't want it to touch her skin so she won't develop a diaper rash that will turn badly fast. And since she won't have any white blood cells after the treatment, this will be another site for infection.

Jonny and I had a chance to go to dinner with our wonderful small group tonight. It was so nice to get somewhat dressed up and do something normal. When I say dressed up I mean jeans instead of sweats, and I wore jewelry!! When we got back Emma was her normal happy self just playing with grandma and grandpa, and of course watching Praise Baby.

Pray specifically for:

A good report on the ultrasound, no abscess.

A good restful night of sleep for all three of us.

No infections

Her counts continue to recover over the next few days.

No side effects for the next round of chemo(one of the long term side effects is learning disabilites. She may not comprehend things as easily and she may have attention problems. These are things they have seen in some children chemo patients.)

A complete healing!!!!

What a long week!

2009-05-08T13:16:00.000-07:00

Emma has been doing well the past couple of days. She has been smiling and playing almost like normal. We think she might be in a little bit of pain after her surgery, so we give her morphine as needed. We also think she is still teething which is adding to her pain. She has been sleeping better at night, but still gets up early ready to play. I am trying so hard to get her on some sort of schedule, but with all of the nurses and doctors checking on her all of the time it is hard to keep it. Her white blood cells have recovered and are at 780 as of today. This is a fabulous number so far and we pray that she continues to produce more and more. There is no sign of leukemia in those cells also. Her platelets are still low along with her red blood cells, so they will be doing transfusions to help raise those.

Jonny went to urologist on wednesday because he has been having some pain which they thought was an infection. They found 3 kidney stones, one in his bladder and one in each kidney. The one in the bladder was too big to pass so they decided to operate on thursday to remove it. I know they say that it is such a simple procedure, but he is my husband. I was so torn between going with him to the procedure or staying with Emma. I decided since Emma was feeling well, I would go with Jonny but would be ready to come back if anything happened. Jonny's grandparents were more than happy to help us out too. His grandma stayed with Emma along with my wonderful friend Callie, and his grandpa and I took Jonny to get the operation done. The operation went great, and they are sending the stone off to see what its composition is so we can prevent these in the future. The stress of the situation did not cause the stones, but it caused the movement of the stone. Jonny and I are trying to figure out a way to deal with a stress so it doesn't affect our health. Jonny is back to normal today and even got out to get a haircut and some lunch with his buddy Gerod.

Emma had a CT scan on tuesday because her stomach was puffy again and she was spiking fevers. They also wanted to make sure she didn't have a fungal infection instead of bacterial. They said that they found a little spot of pneumonia on her upper lobe and what they thought was inflammation of the appendix. They said that this was nothing we need to worry about now and that the antibiotics that she is on would take care of it. They have her on at least 4 antibiotics along with an anti-fungal medicine so they thought she should be covered.

On thursdays the oncologists have a big meeting with the surgeons, PA's, residents, and students to discuss the patients. They all reviewed the CT scan from tuesday, and thought that she may have an abscess above her bladder. The oncologists want to wait until monday to see if it is small enough for the antibiotics to take care of it. If it is still there monday then they will operate. They will go in and drain the abscess and check out all of her other organs to make sure they are okay. The surgeons have been in everyday to check her out so they are keeping a very close eye on her. If she is clear on monday they will think about sending us home for a couple of days before starting her next round of chemo.

This has been a very stressful and tiring week, but through it all God has given us the energy and strength to get through it. He has given such wonderful family and friends who have been there since day 1. We want to thank everyone who has loved and supported us throughout this journey so far. We appreciate the time and thoughtfulness you have put in to make our lives easier.

Today is a fabulous day! Emma is happy and Jonny is healthy again : ) Praise God!!!

Pray specifically for:

No surgery on monday. Pray that the abcsess is gone by monday.

Her counts continue to recover.

Minimal or no side effects from the medicine and chemo.

No infections.

Mine and Jonny's health.

The central line is in!!

2009-05-04T15:11:00.000-07:00

After waiting almost all day for surgery, Emma finally got her central line in this afternoon. We were hoping that she would get it, but the doctors weren't sure it would be possible today. Because her counts are so low and she has been feverish, they said that this was not an "ideal" time to do the surgery. But the pros outweighed the cons and they continued on with the surgery. The surgery was successful and Emma is doing great!

Emma's white blood cell count is 12% which is a great start! We are still trying to understand how all of the numbers work, but what we do understand is that Emma is starting to rebuild her immune system. She has had a platelet and blood transfusion today as well. Hopefully soon we will see Emma generating her own red blood cells, and platelets.

Emma is going to be sore from her operation today, we ask that you would pray that Emma's pain or soreness will be minimal. We also ask you to continue to pray for a complete healing for Emma. We thank everyone for their thoughts and prayers Emma is doing great through the first month, but we have 10 more months to go. Please pray for strength for all of us, we love you all.

Day 25

2009-04-30T14:28:00.000-07:00

Emma is finally back to herself today! We are confident that we got the infection taken care of and she has lost a lot of the fluid she retained. She is able to sit up on her own, and is eating somewhat regularly. She will have to continue the antibiotics for the next 4 days to make sure we have taken care of everything. Jonny and I are so happy that she is back on track!

She is done with chemo until her white blood cells start to recover. As of today, she has not produced any. But her platelets were at 85,000 which is a very good number for Emma. She is scheduled to get a central line put in on monday. This is an IV through her chest which is inserted into her major artery. This will be a semi-permanent IV that they will use for all of her treatments. We cannot wait for this to happen so she actually start to use her left arm again! The doctor said that as long as her platelets are high enough, and she has produced a few white blood cells, they can put the central line in.

The doctors are pleased with Emma's progress through this infection, but know that we still have a long road ahead of us. They are still saying that we may get to go home for a day or two, but that they are not certain. God knows what is best for Emma, and he will continue to be with her throughout this entire process. Because Emma has not produced white blood cells, they may delay her chemo for a week or two. So, we don't know how long we will be in the hospital this time around. We want to get her through this as quickly as possible, but we know that she needs her rest.

They are encouraging Jonny and I to get out of the hospital because we are going stir crazy! I have gotten out for a couple of hours at a time, but I feel so guilty leaving her. But if I don't get out I will go crazy looking at the same 4 walls 24/7. We are also ready for a good night sleep. Emma has decided the last 2 nights that she wants to play from 2-4:30 a.m. Last night she talked and scratched my shirt for 2 1/2 hours! I was almost to the point of asking for morphine to put her to sleep : ) But I didn't! My goal for the rest of the week is to get her on a schedule again for her sake and ours.

Please pray specifically for:

Production of good white blood cells

Platelets to keep producing and staying high

For the central line to be put in on monday

No infections

Rest for the entire family

Complete healing of her current infection

Complete healing

Day 22

2009-04-27T11:12:00.000-07:00

We had a rough start last night, but Emma is doing well today. She has had horrible mucoucitis (sp?) which has caused her trouble breathing, but it seems to be doing better today. The doctor was in our room 3 times last night, and we finally figured out that the best way to get Emma comfortable is to put her on her tummy. We would have never thought about this because her stomach is so big. I thought it would cause her more discomfort, but she sleeps so well. Praise the Lord! She has lost some fluid, but her body is still unbelievably puffy. It has caused her skin to stretch which is uncomfortable and she can't sit up on her own anymore. They are going to give her more medication to try to get rid of all of this fluid.

We had good news this morning! Her platelets have stayed up at 21,000 which is a vast improvement from the 6,000 yesterday. We are hoping this is a good sign that she is starting to produce her own. Her white blood cell count is still at zero, but we are hoping that it will start to improve in the next few days. The doctor also said that she is doing "remarkably" well, and we expect her to make a full recovery from this infection. Nothing has grown from the cultures they have taken recently which is a good sign that the infection is going away!

Our nurses have been wonderful here, and make a difference in Emma's progress. Emma loves their name badges so much that they made her one. It says Princess Emma! She loves it and wears it when she feels well. Thank you nurses and doctors at Childrens for loving our little girl!

She is sleeping right now so we are just trying to keep her quiet and comfortable. She will not get another round of chemo until her white blood cell counts recover on their own. So now we are just hanging out until that happens.

We want to thank everyone for your extra prayers the last couple of days. God has answered! He continues to give Jonny and I a peace about the situation. These days have been hard, but God continues to heal our little girl. We will keep you all updated! We can't thank everyone enough for your kindness, support, and prayers! We love you all!!

Please pray specifically for:

The fluid to drain quickly so Emma can be comfortable again

Infection to be completely gone

Her to produce good white blood cells, hemoglobin, and platelets

NO MORE INFECTIONS

A complete healing

Minimal side effects from the chemo

Jonny and I to get sleep and stay healthy

2009-04-26T19:02:00.000-07:00

Saturday and Sunday have both been very long days, Emma came down with a bacterial infection Saturday. This bacteria has caused Emma to retain fluid, she has gained approximately 3 pounds of fluid over the past few days. That does not sound like too much, but in a baby that is very significant. She is very uncomfortable right now so pray that God will touch her body and relieve the fluid and her discomfort, it is making her look like she is 8 months pregnant. We seem to have the actual infection under control, her fever has stayed down most of the day Sunday.

Saturday night and Sunday morning were extremely long a stressful. The doctors hooked Emma up to a heart monitor, oxygen monitor, and breathing monitor. One of the three beeped constantly all night and into the morning. The monitors were for precautionary reasons only. Both of us are extremely tired and can only guess how exhausted Emma is. We need lots of prayer right now for continued healing for Emma, specifically for her fluid retention which is causing her great discomfort. Pray also that we have a handle on the bacterial infection, and pray for Emma's white blood count to start to recover with good white blood cells. We thank everyone for all their prayers and support.

Long Day

2009-04-24T22:07:00.000-07:00

Emma woke up with a fever this morning and she just wasn't feeling well. Her breathing was abnormal and her stomach was larger and harder than usual. The doctors came in during their rounds and said that they spent a long time discussing Emma. They decided that in order to rule out infection in her abdomen or chest we needed to do a CT scan. Of course this required that Emma not eat or drink anything until the test. It is the CT departments policy that she has a peripheral IV in order to put contrast in the IV because if they put it in her picc line it could erupt. I was so upset about this because that meant that they would have to stick her again and they have already had so much trouble trying to find veins that were big enough.

The nurses said that the doctor requested they try 3 times for the IV before giving up. I pleaded with the nurses to just say they tried, so they wouldn't have to poke her. It is so hard to sit and watch them do all of this stuff to my baby day after day and not be able to stop them. I know they are saving her life, but she deserves a day off!! The nurses tried twice before calling it quits, and they decided to give Emma contrast orally. This was just a clear liquid that we had to give her every 20 minutes for an hour. Emma didn't like this either, but we were able to get it down. Before being diagnosed she took her medicine so well, but now she rejects almost everything we try to put in her mouth because she has had so many bad tasting medicines.

They gave her some medicine to relax her so she wouldn't move during the scan. This knocked her out for at least 2 hours and gave her a chance to get some good sleep. The doctors came in shortly after and said that the results looked good, and they didn't see anything abnormal. There was a little bit of fluid in the left lung and some in the stomach, but that sometimes we have fluid there.

Because Emma has been running fevers she has been losing platelets like crazy. She has had a platelet transfusion everyday for the last 4 days. They finally decided to do a cross match to try to find her an exact match for platelets. They think that her body may be rejecting the platelets. After her transfusion yesterday they seemed to stay somewhat higher so that is a good sign. I guess we will see tomorrow what her count is. She also received a blood transfusion today which is actually pretty routine around here.

Tonight as we were winding down we noticed that Emma's stomach was a lot larger than before. The on call doctor came and checked her out, but didn't seem too alarmed. After about another hour we noticed that it was even larger. We called for the doctor again, and she decided to give her the medicine they had scheduled for later in the evening. This would take the fluid from the stomach and distribute it to the right places in the body. Then they will give her more lasiks to get rid of any fluid that is not needed. It sure seems like they have a medicine for just about anything. Emma is considered a "hard" patient because she has got a list of medicines 3 pages long! It's hard to believe that her little body can handle everything.

It is about 12:30 a.m. and Jonny and I are watching Emma sleep. We want to make sure that her stomach goes down before we sleep. They have hooked her up to the monitors to make sure her oxygen level is well along with her heart rate and breathing. Her heart rate was up to over 200 most of the day, so we are glad to see it has gone down. We are getting very restless here at the hospital. I can't wait to go home and I know Emma would just love it. I'm so tired of being woken up 3 times in the middle of the night, and then early in the morning. And if I'm tired of it, I know Emma definetly is!! We were also told that we shouldn't plan when we will be in and out of the hospital. Instead of being home 2 weeks like I thought, we may only get to go home for 2 days. They told me to start writing in pencil on my planner, and buy a big eraser. This is extremely hard for me because I am such a planner. God's plans don't always coincide with mine, but his always work out better : )

I still can't believe all of this is happening, but I have accepted the fact that Emma has Leukemia. What I am still having a hard time accepting is the fact that she has to suffer. I miss her smile and laugh. I miss her growling and want to play. I pray everyday that God just take away the pain so she can have a good day. I don't understand why, but I know God is faithful. He has answered every prayer, and I know he will continue to do so.

Please pray specifically for:
Emma's stomach to soften
The side effects from the chemo to wear off so she can feel better and play and be happy
Restful nights of sleep for Emma
Our time at home, we would like more than 2 days
A complete healing

Good News!

2009-04-23T12:14:00.000-07:00

Emma has had a good couple of days! She has had her ups and downs, but more ups! She has been playing and eating so much better. Her counts are still low and her cbc (white blood cell count) has been zero! So much to be thankful for. She has been spiking fever after fever these past few days, but nothing has grown from the blood cultures. She was having some difficulty breathing this morning during her fever so they took a chest x-ray. We are still waiting for the results this afternoon. They don't expect to find anything it's just an extra precaution.

We were also in "contact precuation" the last couple of days. Emma had some bad diarrhea which sometimes mean an infection called Rodavirus. This is easily curable for Emma, but they are worried about other patients, and people outside of the hospital. Since Jonny and I usually don't leave the hospital, we didn't have to wear gowns, but everyone who came in and out had to put on a flattering yellow gown. The test came back negative, so now everyone can enter as usual.

Jonny and I went to the Arts Festival on tuesday afternoon for some lunch and time away. It was so wonderful to get out, but I was so sad and worried to leave her. As we were walking around I called my sister to see how she was doing. My sister said that the doctor was in and had some good news, but wanted to wait for us to come back. Jonny and I were so excited, and were thinking of all the good things she could say. We were really hoping that she would say that Emma is cured, we can go home immediately, and no more chemo!!! Well, we didn't get that news, but the genetics test came back in Emma's favor. She has a deletion of the MLL gene, which has a better prognosis than the rearrangement. That is exactly what we prayed for, and that is exactly how God answered!

Please pray that Emma has good days ahead! Pray that she continues to eat well, and that she starts to build good white blood cells. Pray that we get to go home sometime next week, Emma is so ready! And as always, pray for a complete healing!

Day 15

2009-04-20T20:33:00.000-07:00

Jonny and I had a restful sleep last night in the Ronald McDonald room, but were woken up by a phone call letting us know that Emma had spiked a fever of 102. We rushed out of bed and headed straight up to see how she was. They drew blood and sent them off to the lab to see if they could find anything. We haven't heard anything yet so we are just waiting. Her temp went down fast after a little dose of tylenol, but she is now working on another one. Because of her fever they pushed back her spinal tap until tomorrow at 8 a.m. She still got her chemo today, and seemed to handle it well. She also received a blood transfusion today.

The doctor got the genetics test back, and it was still inconclusive. She said that it was either a rearrangement of the MLL gene or a deletion of the gene. A deletion of the gene has a better prognosis, but the doctor explained that the numbers aren't that different. I was alone when she came in with the test and didn't understand a lot of what she said. Genetics are very complicated and they are going to perform some more in depth tests that that the doctor can't even explain. They did not get enough white blood cells in the first blood draw, and now it is too late because they have wiped out all of the cells. We may have to wait longer, but Jonny and I have peace about the situation. We will not change the game plan just yet, so why worry? She said that they will be doing a typing test for her bone marrow, and will put her on the bone marrow registry so they can start looking for a match. This is still a possibility, but not for a while. And since Emma is responding so well to the treatment, we don't think this will be an option. Non-relative matches are not as good as if she had a sibling, but it has been done. Again, this is in the future and something we are not going to worry about.

She had a good day today! She seemed a little out of it at times, but we got quite a few smiles out of her and she played a lot. We got her to eat considerably more without it hurting, but we are still struggling. Her counts are still bottomed out, and nothing has really changed. She will get another platelet transfusion at 5 a.m. and then her procedure at 8 a.m. We are hoping that she will have a good rest of the week since she has been in better spirits these last couple of days.

God is so good! He has just sent such a peace over me. It's like he is telling me that he is holding Emma in his arms every second of the day. And he is holding her especially tight when she is in pain or uncomfortable.

It is midnight right now, and she is still awake. We actually got 4 oz of formula down right before the cut off at midnight. She can't have anything orally after midnight the night before her procedure. I am pretty wired right now so I don't think sleep is in my near future : ) I am going to try to get Emma down for the night since they are waking her up so early in the morning. She is also up so late because she spiked another fever of 101.5, but it is on its way down. Tylenol does wonders! On top of everything else she is teething and in a lot of pain because of that. She has the usual runny nose, low grade fevers, and of course the pain! The doctors won't let us give her tylenol unless she has a fever of 101, so we can't use if for teething. But, they made her a little coctail of lidacaine, benadryl, and maalox that we can rub around her gums to numb them. She's pretty lucky because most kids don't get that kind of medicine for teething : ) I think Emma would rather be home though, with the usual tylenol and teething toys.

Please pray again for her procedure tomorrow. Also pray that her fever drops, and nothing comes of it. Pray that she will have a good rest of the week, and the sores in her mouth and GI tract will go away. Pray that she will start to eat regularly without pain. Pray for the genetics test to come back in Emma's favor (a deletion of the gene rather than a rearrangement), and as always a complete healing.

A better day!

2009-04-19T18:08:00.000-07:00

Emma has had a better day today! She still doesn't feel well, but we got her to smile and play which is quite the improvement. She had her moments where she acted like she was in pain, and she slept a lot. This picture was of her late this morning. She has only had two doses of morphine today and is completely off of the nausea medecine for now. The morphine actually has a reverse effect on Emma, and makes her more awake than sleepy. We figured out that the hard way when we gave her a dose of morphine late one night and she didn't go to sleep until 3 in the morning!!

We talked to the doctor about her not eating, and he said that hopefully her sores will go away within 5-6 days. Then maybe she will eat! She hasn't lost her appetite because she gets excited when she sees her bottle, and she tries to eat. But for now, we are keeping her on the TPN (total nutrition) until she can drink her bottle.

Emma has been getting a nupigen shot every night to build her good white blood cells up. We will have to continue this for the year of treatment which means we are going to have to give her a shot at home. I do not think I can do it, but Jonny has given her 3 shots at the hospital and is a pro. I'm so glad that he can do it so I don't have to : ) We are also hoping that she will be able to get a central line put in her chest rather than keeping the picc line in her arm. An IV in a 6 month old babies arm is just a HUGE inconvenience! She is definitely building up her muscles in that arm though. She is also getting up on her knees, and I think if she didn't have the picc line she would try getting up on her hands. I'm super excited for her to crawl. She has almost mastered sitting up too!

Tomorrow morning she has her spinal tap and chemo treatments. Please pray that everything goes smoothly in the spinal tap with no complications. Also pray that her sores disappear so she is not in pain and will be able to eat again. Pray that she will not get nauseous from the chemo tomorrow, and that she has a great week full of playing, talking, and just being ornery! Also pray for a complete healing!

Day 13

2009-04-18T15:51:00.000-07:00

Emma is still not feeling well today. She has been extremely tired, and will not eat. One of the side effects of the chemo is sores in the mouth all the way down through the esophagus to the bottom. We think she has some sores in her throat and further down because she acts like it hurts when she eats. She gets about four to five drinks in before she just screams in pain. This is to be expected, but she is not eating so they have hooked her up to TPN (total nutrition) and lipids. This will help her get the calories she needs to gain weight properly, and get her through this tough time. This will not take away the hunger pains so we are still attempting to feed her because in some cases children lose their appetites when they are on a nutrition substitute and we don't want this to be the case with Emma. She is also acting like her body is sore which is understandable because of the procedures she had done on monday. She loves to be held right now, so we hardly ever put her down.

She has had tuesday-sunday off of chemo this week, and will start up on monday again. They will do the weekly spinal tap with a chemo treatment, and then have two doses of chemo after that. We are hoping that she starts feeling well soon, so she can have a good week next week. We keep asking if she will bounce back soon, but they say that everyone responds differently and we will have to see.

All of her cbc's are where we want them to be, and we are hoping the spinal test is zero again. They have started checking her blood every other day since her counts have not changed. She will be getting another blood transfusion and platelet transfusion tomorrow to get ready for the spinal on monday. She has done extremely well with the transfusions and don't expect any complications this time.

On wednesday the OU girl's basketball team will be visiting the hospital. We would love to get Emma out of the room if her counts are up, and she is feeling well. We are also still hoping Bob Stoops will come visit her soon! Jonathan and I will be staying in the Ronald McDonald Family Room tomorrow night so we can get a full uninterruped night of sleep. This is a room in the hospital that family can stay in if need be. I do not want to leave the hospital over night, so this is a good way to be close but still get some sleep. We thought it would be good to recharge before another week of chemo. My mom and mother-in-law will be staying the night with Emma so she will be well taken care of.

Jonny and I did get out of the hospital yesterday. We went and walked around bricktown for a couple of hours. It was so nice to see the outside world, but I sure missed and worried about Emma. Of course she was fine, but its hard to be away. We are also going to try to go to the Arts Festival next week to get some lunch and dessert.

Please pray specifically for Emma's sores to go away, and that she will be able to eat regularly soon! Pray that her soreness goes away, and that she will be able to play again. Pray for the spinal tap on monday that it goes smoothly without complications. And as always, Pray for a complete healing! God has been so good to our family, and he constantly reminds us that he is here holding our little girl.

Day 11

2009-04-16T14:08:00.000-07:00

It seems like we have been in this hospital forever. We are kind of picking up some sort of a routine, and I almost have the room organized the way I want it. I can't believe it was 11 days ago that we found out the news! Jonny and I are finally accepting the fact that Emma has leukemia, and are getting ready for the long year ahead of us. We are still being bomarded with information daily, and are trying our best to keep up. We are meeting a lot of new families who are in the same situation we are, and it has helped us through some days here. God has been so good to us, and has filled us daily with peace. We still have our moments of sadness and worry, but we know that God is in control, and he will protect Emma.

Emma has been sick most of the week. She has been very tired, and nauseas the last few days. We are having a hard time getting her to eat, so the doctors increased her IV fluid again so she will stay hydrated. She is very fussy, and acts like she is achy all over. She has been sleeping most of the days, and is restless at night. We don't like seeing her in this state, but we know that what we are doing is saving her life, and that helps us cope better with the situation.

Jonny woke up early tuesday morning with horrible pain in his stomach. He woke me and said that he was in so much pain he had to go to the emergency room. One of the nurses from our floor took him over to presbyterian hospital in a wheel chair to get checked out in the ER. I was so worried that I called his parents to come stay with Emma, so I could go sit with him. It turned out that he just had an infection, and they medicated him with some powerful meds so he could sleep. The infection was caused by lack of hydration, and sitting around for the last week. His dad and I brought him back to the room, and he was passed out almost all day on tuesday. This was a warning to both Jonny and I that we need to start taking care of ourselves or we are going to be useless to Emma. We have started drinking more water, and eating healthier.

Emma spiked a fever of 101.4 on wednesday, which the doctors say was to be expected. They drew blood right away, and then started her on some broad spectrum antibiotics. So far the tests have come back negative for infection, so they think it might be a nutripenic fever. This is due to the low amount of nutrifils. This is very common, and her fever has been lower ever since. The doctor also said that her hemoglobin is low as well as her platelets, so she will be receiving a transfusion for both this weekend.

We want to thank everyone again for all of their support and prayers for Emma! We have enjoyed all of the food baskets, cards, and visitors. We can't thank you enough for everything you have done and are doing for our family. We have such amazing family, friends, and church family. Please pray that Emma starts to feel better. Pray that the genetics test comes back in Emma's favor, and as always pray for a COMPLETE HEALING! We love you!

Day 9

2009-04-14T20:08:00.000-07:00

Another great day of news! The final results from the bone marrow came back at 0%. Which means that they found no trace of blasts (leukemia cells) in the bone marrow. Now this doesn't mean that she is completely clear because sometimes they can hide. That is why we have to keep up with the chemo therapy. Emma has been sick the past couple of days with a tummy ache, but hopefully will be her normal self tomorrow. I just wanted everyone to know the good news. I'm tired tonight so I'm going to cut this short.

Please pray specifically for Emma to feel better tomorrow. She has a slight fever so pray that it will go down, and she doesn't have an infection. And as always, continue to pray for a complete healing!

2009-04-13T21:39:00.001-07:00

We had great news today! Emma had her spinal tap and bone marrow tests, and both of them came back with no traces of leukemia! The doctor said that this news was phenominal!!! Now although the tests came back negative, it was just a sample of each and there could possibly be leukemia blasts hidden somewhere. That is why we have to continue on with the hard core chemo therapy for the next year.

Jonny and I have been praying over the last several days for the bone marrow test to come back with no evidence of blasts, and the Lord answered our prayers! We feel like a huge weight has been lifted off our chest, and we can finally breathe. Emma had an okay day. She got sick early this afternoon, and has been really sleepy. We had to give her some anti-nausea medecine because she seems to have had a tummy ache all day. Although she felt bad, she still had enough energy to give us a few smiles! She should have a couple of days with no chemo, so hopefully she can have a few days with no nausea.

We are still waiting to hear back from the doctor on the genetics test, which will also help us determine what route to take with her treatment. The doctor did say that after the preliminary test, she believes that Emma has a rare deletion of the MLL gene. I'm not sure exactly what that means, but the prognosis is better than having a malformation of the MLL gene. We will hopefully have the final test results back at the end of the week.

Please continue to pray that the Lord will completely heal Emma. That she will have no side effects to the chemo, and that the genetics test will come back in her favor. As always, thank you so much for your prayers and support. We love you!

Day 7

2009-04-12T17:47:00.000-07:00

Emma is doing well today. Her counts are all the same, and we are anxiously awaiting the bone marrow test tomorrow. She had a platelet transfusion today to get ready for the spinal tap and bone marrow test. She has had another great day of playing, talking, and sleeping. Our wonderful family provided us with two Easter dinners, so we were very well fed today. This was not the Easter Jonny and I had planned, but the most important thing is we spent it with family. Emma got to open 3 baskets, and has tons of new toys and clothes. Her great grandma Marilyn has altered her t-shirts so that we can get them on without having to disconnect the IV everytime. Emma would prefer to go naked though : ) It was another day off of chemo, but we start back tomorrow morning.

Please pray that Emma does well in her procedure tomorrow. Also, that the bone marrow test comes back with good results. Pray that Emma does not have any side effects to the chemo, and as always pray for a complete healing! Jonny and I are exhausted and are trying to catch sleep here and there. Pray that we can get a restful night sleep tonight. Thank you everyone for your prayers! We love all of you!

Day 6

2009-04-11T21:11:00.000-07:00

We spoke to the doctor yesterday evening, and she told us some things were weren't expecting. These things were always possibilities, but it was so hard to hear. So far what we understand is they are doing a genetics screening test to figure out if there is a wacky gene or not. There are different gene types associated with ALL. This genetic test along with the bone marrow biopsy will help determine whether or not Emma will need a bone marrow transfusion. I guess we just understood that she would only do chemo and nothing else, but the doctor said that the bone marrow transfusion is always on reserve.

Jonny and I are scared! We had a rough night last night because the thought of losing our little girl overwhelmed us. We are trying so hard to stay strong, but the devil keeps putting those little thoughts in our minds. I have prayed so hard today that the Lord would just fill us with peace. That he will help us understand this overload of information that the doctors keep giving us. I am attempting to study up on leukemia, but I just can't wrap my mind around everything. The book that I'm reading also gives you every detail, up to the worst case scenarios. I know I need to know everything about what is going on, but I'm scared to open that book or do research on the internet because then I know what could happen to Emma.

So many things are going through our minds, but God keeps reminding us that everything is okay. Jonny and I studied about fear in our bible study together this morning. And the one quote that keeps popping up in my mind is, "As hard as trusting can be, living with constant fear is harder." That is so true! And as we were wrapping up our bible study, I came accross a daily devotional I had saved in my bible. It talks about wavering faith. Here is a quote from the study, " the closest we get to perfect faith while on earth is the ability to trust what we ask in God is as good as done." We have been praying for God to completely heal Emma, so why do we keep doubting that this will be done? As we were leaving the chapel this morning Jonny said, "Why not? We have been praying for a complete healing, so why wouldn't God completely heal her?"

My stomach has been in complete knots today, but as I was putting Emma down to sleep I was praying for everything to be okay. As I was praying I felt a complete peace come over me. God is so good to us! I know that there will still be days ahead where we are scared, but we have a great support system and we have a God who loves us more than we can imagine.

Emma's test results were the same today, and the doctors were pleased! Please pray specifically for the bone marrow test on monday. Pray that there is no leukemia in the bone marrow. Also pray that the genetic screening comes back normal, so chemo is the only method of treatment Emma has to do. Also pray that Emma doesn't have any side effects to the medication, and that she can feel great throughout the entire process. And as always continue to pray for a complete healing of our brave little Emma Grace Williams! She has had another great day of playing, talking, and entertaining anyone who walks through her door!

Day 5

2009-04-10T13:55:00.000-07:00

We have had another day of great news! Still no trace of blasts in her blood, and her white cell count is as low as they want it. Emma is still progressing as she should, and is in a great mood! She has been talking so much, and started growling and us and the nurses when she doesn't like something we are doing : ) She also just growls randomly, and we haven't been able to figure out why. I guess just something new she has learned.

We have a lot of her toys up here at the hospital, and try to walk her around the room when she gets restless. She has had many visitors that peek at her from outside her room. As soon as she spots them she gives them a big smile. I guess it is her way of saying hi, I'm fine and thanks for stopping by! She is still surrounded by family and friends, and is always the center of attention. She is also loved by all the nurses and doctors. Everytime a new nurse comes in they say, "I was so glad when I heard I got to meet Emma today." Everyone just loves her, and are taking great care of her. Her immune system is way down right now, so are being extra careful around her. We are being very strict about washing our hands, and wearing masks. Infection is something we do not want to happen.

Last night her temp dropped and the nurses were concerned that she may have an infection. They called the doctor and she said to cover her up, and see if the temp came back up. Fortunately that did the trick and she was fine. Jonny and I couldn't sleep though because we were so worried she had an infection. We are having a good day today, although the thought of her getting an infection or worse is still in the back of our minds.

Please pray today for no infections, a good report on the bone marrow test on monday, and a complete healing. Thank you again for everything!

Emma's Story

2009-04-09T09:37:00.000-07:00

Our sunday morning started out just like any other sunday. Jonny and I woke up to our little girl Emma talking in her crib. As usual, daddy went and got her out of her bed to come hang out with us and eat her breakfast. She was her normal self just smiling and talking up a storm. After we fixed her bottle she drank a little, and then started playing with it (which was a recent habit she started). I changed her diaper, and checked out the bruise on her hip that appeared about three days earlier. We were still stumped about it, but was convinced it was some sort of a bug bite, and were told by doctors just to watch it. Everytime I change her diaper I check her whole body to make sure she is okay. Everything checked out fine. It wasn't five minutes later that Jonny was playing with her that he felt a bump on her chest. We undressed her again to find a pea sized bruise on her chest. Jonny knew something was wrong and immediately said we need to go to the ER. We both threw on some clothes, packed Emma's bag, and headed to Baptist Hospital.

We got there about 10 a.m. and were immediately checked out in triage. The nurse was not sure what it was, so sent us back to the doctor for him to check her out. Of course we had to wait a while for the doctor to come see us. The doctor said that this was unusual so he wanted to do a complete blood work-up. It took three nurses to hold Emma down to draw blood. They tried her arm, foot, and finally had to draw it from her head. I couldn't bear to watch, so my mother-in-law came in along with Jonny to get Emma through it. They left the IV in her head so that if they had to draw more blood it would be easier.

We waited nervously for the test results, but thought it would be some sort of minor blood disease that could be taken care of by 10 days of medication. As soon as I saw the doctor's face I knew he had bad news. My stomach dropped and my heart already ached. He said that he had bad news and that it was Leukemia. I heard the word Leukemia, and I lost all control. So many thoughts were running through my head. I couldn't believe that my sweet little Emma could have such a nasty disease. Why Emma? This happens to other people, not our family.

The doctor wanted to get us transferred to OU Children's hospital as soon as possible so they transported her by ambulance. We arrived to OU at about 1 p.m. and were anxiously waiting to talk to the oncologist. She finally came in about 8 p.m. that evening and said that Emma was diagnosed with Leukemia, but she was not sure what type and we wouldn't find out until the following afternoon. We couldn't stand all of the waiting, and just wanted to know what the game plan would be or if it was just a huge mistake.

The first night in the hospital was aweful. Jonny and I just couldn't believe that we were watching our little girl lie in a hospital bed with cancer! How could such a small and innocent child be so sick? I woke up the next morning not remembering where I was. Once I saw Emma lying right beside me, I remembered the nightmare I was in. I just started sobbing because I was hoping I would wake up and be home listening to Emma talk to herself in her crib. I thought to myself, right now I should be opening the doors and cleaning up the house for Beckham to come over. She usually woke up right after her arrived, and played with daddy until he had to go to work. She then joined Beckham and I in the living room, drank her bottle, and played in her jumpy seat while watching Praise Baby. She would sit there for a half an hour while Beckham ate his breakfast, and then we would all play until nap time.

She had a scheduled spinal tap on monday morning, and they were also going to put in a picc line so it would be easier for them to draw blood without having to stick her everytime. This was a pretty simple procedure, and she would be sedated so she wouldn't remember a thing. Jonny and I walked her down to the operation room, and just sobbed because it was the first time we left her in a stranger's hands. It was the first time that my baby had to have an operation, the first time I couldn't fix what was wrong. Mommy couldn't do anything to stop what was about to take over Emma's life for the next few years and maybe beyond.

The procedure only took about an hour, and they brought her right to us. She was really sleepy from the drugs, but they said she did beautifully. She was talking and smiling the entire time, and there were not complications. After we got back to the room, we had to wait again for the tests to come back to see what type of Leukemia she has. We were surrounded by family and frinds when the doctor came in and said that she has Cell B Acute Lymphoblastic Leukemia. We knew that ALL was the most common type of cancer, and the doctor's were very confident that we were going to beat this. They went over the game plan with the entire family so we could all ask questions.

Jonny and I felt a tiny bit better after hearing what we were going to do, but it was still in the back of our minds that we may lose our little girl. We decided that the only way we can get through this is to take it day by day. When we have a good day, I have decided to be in a good mood and be super positive about everything. When we are having a bad day (which we have not had yet) I have decided to do my best to be positive, and know that there are better days ahead.

Emma is responding so well to the treatment, and we have gotten great news everyday we have been here. Today is day 4 and she is doing great. She has lost her appetite, but she finally drank 5 oz of formula and ate 4 oz of applesauce. The doctor said that this medication will suppress her appetite, but with the steroids she is taking she should regain in no time.

Jonny and I are very optimistic and pray for a complete healing. We also ask that people pray specifically for a complete healing, no infections, and for a great report on monday from her bone marrow test. As I understand, we will be at the hospital for four weeks and then in and out for the next year. As long as Emma responds well to the treatment, the doctor believes that she has less chance of relapse and more of a chance to be a long term survivor.

We thank everyone so much for their prayers and support for Emma and our family. God has already performed so many miracles in Emma, and I believe that he is not even close to being finished.