Thursday, April 30, 2009
Day 25
Monday, April 27, 2009
Day 22
Sunday, April 26, 2009
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!
Monday, April 20, 2009
Day 15
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!
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
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
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.
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
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
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
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
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 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
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.