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

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

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!