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
Saturday, March 13, 2010
Wednesday, March 10, 2010
March 10
Today we finally have a plan! This morning Emma had an x-ray and an ultrasound which revealed she has some air/gas leakage in her intestine. The doctors are not %100 sure but they believe she has a infection which is causing her intestinal wall to leak air/gas into the blood stream. The leak is not alarming as of now, what is concerning is what is causing this to happen. The doctors have consulted and believe that a minimum of 7 days of antibiotics should resolve the problem. We are worried as any parent would be, but we are relieved that we have a plan now. Today she started her first day of antibiotics, so we have 6-14 more days here :(
Emma is now NPO which means that she can not have any food or liquid for a minimum is 7 days. This is sad because Emma has learned the sign language sign for "more" so every time she sees food or a cup she signs "more." It is really cute but sad at the same time because she is so hungry. Also anytime she sees pizza or french fries on T.V. she says "mmmmmm." Is it cruel to laugh when she does that?
Emma will be put on TPN for nutrition while she is NPO, I know I am using a lot of abbreviations but I don't know what the letters stand for. TPN is delivered to her through IV so nothing will be flowing through her stomach. The doctors call what we are doing "gut rest" we call it torture.
Please pray for:
The antibiotics to do their job and kick this infection to the curb
The antibiotics to take care of the VRE that Emma has on top of everything else
This infection to begin to heal fast so Emma does not require surgery.
Especially pray that Emma does not lose her interest in eating while she is NPO
Pray for Jessica and myself while we half to deny Emma food for 7 days.
That the TPN does not effect her liver negatively, which is a small possibility.
That we can find some rest here at the hospital
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
Wednesday, February 24, 2010
May 5th!
May 5th is the day that we expect Emma to be completely done with treatment!!! Hooray!!! Now, this date could change, but we are hoping it will be close to. The end is so near that we can taste it : ) We are really hoping that we will get to take her central line out soon after treatment. We will just have to go over our options with the doctors once her treatment is over.
Emma has been feeling pretty sick the past few weeks. She has had a lot of diarrhea and vomiting and has been so tired and out of sorts. We have been in close contact with the clinic the past few weeks trying to figure out what is going on. Jonny and I have been extremely worried about her because she hasn't been herself. Today, she had a spinal chemo treatment and we got to talk with the dr. in depth about what has been going on with her. Last night we found blood in her stool which could be a sign of something else going on. They are going to run several tests to try to figure out what is causing all of this, and to see if there is a solution.
On the upside, she has been turning into a toddler right before our very eyes. I don't like calling her a toddler because she is still my baby, but I can't stop it. She is now falling asleep on her own (well, most of the time). She is saying about 16 words and is communicating very well with us. She is learning how to color, and loves to put stickers on paper. She is rearranging everything in the kitchen and learned how to unroll the toilet paper : ) Her favorite dvd is Barney's Top 20 Countdown. She enjoys joining Barney in doing the actions to all of the songs. We even take Barney with us in the car so she will not fuss on the way to the clinic : ) If she wants to watch Barney at home, she will attempt to say his name and then bring us the remote control so we can change the channel. She has also tried to stick a dvd in the vhs player to try to get Barney to play.
Eating is still a challenge and her main source of nutrition is formula. She will eat amost anything chocolate and her new thing is doritos and french onion dip. This chemo sure has messed with her taste buds and gag reflex : ( We are hoping that we will find out what is going on in the next few days. We are ready for her to start running around the house again like crazy : )
Please Pray:
The doctors to figure out what is wrong with Emma so she can feel better
No side effects from the chemo (short term or long term)
Time to fly in the last several weeks of treatment : )
An increase in Emma's appetite and weight gain
For our family! It has been a rough year and we are ready for some sort of normalicy
The health of our new baby!
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!
Sunday, February 14, 2010
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.
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.
Tuesday, February 2, 2010
Home
Emma was discharged yesterday from the hospital, and did wonderfully with the chemo. She was so happy to be home and play with all of her toys. She didn't have much of an appetite in the hospital, and didn't last night either. She woke up this morning sick and vomited first thing. We gave her some nausea meds and she has been sleeping all morning. I'm going to try to keep her asleep most of the day so she doesn't have to feel bad : (
Please Pray:
For Emma's nausea to go away
NO MORE side effects from the chemo (short term or long term)
Please Pray:
For Emma's nausea to go away
NO MORE side effects from the chemo (short term or long term)
Thursday, January 28, 2010
Day 1 In the hospital
Emma was admitted today for her last in-patient treatment. Although we are very excited to get it over with, we are completely wiped out from the long day! We knew it would be a challenge to keep Emma occupied, but Jonny and I are exhausted. Since she is constantly walking around the room and the halls, it is our job to chase her around with the IV pole. And Emma doesn't give us any warning when she takes off, she just goes : ) We have decided to take shifts so we can each have a break. We would have more visitors, but because of the weather it makes it dangerous to travel. But her Nana and Gramps came up for about an hour today to visit. That was nice!
Emma has completed her first chemo for the day and will be on a rescue drug for 4 hours and then fluids all night. This will clear all of the chemo out of her system so it won't damage anything. Emma usually tolerates this chemo very well, except it will probably make her hair fall out again. I don't mind her little bald head, but I'm so ready to do her hair in pigtails : )
I think we are going to all turn in early tonight! Goodnight everyone!
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!
Tuesday, January 26, 2010
Walking Days!
Emma is officially a walker! And is very good at it. She just decided to take off one day and hasn't stopped going. We love it! She is also talking non-stop which is just so much fun to hear. She says a lot of words that we recognize, but sometimes she just babbles. She knows what she is talking about, but nobody else can understand. She has blossomed so much in the past month or so. She is doing something new every single day.
She made her first visit to incredible pizza and had a blast. It was very scary for mommy though because of all the germs, and I literally followed her around with hand sanitizer : ) I know she was getting annoyed, but she would stop playing and let me sanitize. I don't think we will be going back there until she is done with treatment because it was too stressful on me : )
She was going to admit into the hospital today for her last visit, but she didn't make counts so we will try again thursday. We are so ready for this chemo to be over and do not want anymore delays. But she does get 4 days of rest from chemo, which is a praise. She is still having a hard time eating most solids, but has some favorites. She loves cheese, popcorn (the white cheddar flavor), captain crunch with berries, apples and peanut butter (she loves to dip dip dip). And when she dips, she has to say "dip, dip, dip." So precious!
After this 5 day stay, she will have chemo through mid-april at home and at the clinic. And then we are finished!! She will still have frequent clinic visits for blood counts, and she will have to leave her central line in for several months after, but no chemo! The doctor told us that the first year is the most risky year for relapse. I was not prepared to hear that, but I have complete faith in God that he has healed Emma and she will NOT relapse.
Please pray:
Emma have a restful and relaxing break from chemo
She will make counts on thursday so she can admit on friday for her last in-patient chemo
No side effects from chemo (short-term or long-term)
Strength for our family to finish this treatment out
Pray for our new baby(for their health and development) Due date is August 21
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
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