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

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!

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

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!

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

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

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!