Thursday, April 30, 2009

Day 25


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


Monday, April 27, 2009

Day 22


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

Sunday, April 26, 2009

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.

Friday, April 24, 2009

Long Day


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

Thursday, April 23, 2009

Good News!


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!


Monday, April 20, 2009

Day 15

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.

Sunday, April 19, 2009

A better day!

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!

Saturday, April 18, 2009

Day 13

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.

Thursday, April 16, 2009

Day 11


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!

Tuesday, April 14, 2009

Day 9

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!

Monday, April 13, 2009

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!

Sunday, April 12, 2009

Day 7

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!

Saturday, April 11, 2009

Day 6

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!

Friday, April 10, 2009

Day 5

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!

Thursday, April 9, 2009

Emma's Story

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.