Recharged!

Emma's sores in her mouth started to get worse on Friday, which was actually her 8 month birthday. We wanted to celebrate by taking her to the zoo and her counts were up so we wanted to jump on the chance. She had a pretty good morning and seemed to be feeling well except for the bleeding from her mouth and nose. The drs prescribed some pain meds so we felt like we had it under control.

Before we went to the zoo, we went to the home health care office to get her dressing changed. I will hopefully learn how to do that soon! Emma acted like she wasn't feeling well so we gave her some pain meds to help her out. We thought by the time we got to the zoo she would be feeling good. She fell asleep on the way and slept about 30 minutes at the zoo. When she woke up she wasn't feeling well and wanted to be held. That wouldn't be a problem except that she was in the sun and she couldn't get a sunburn. To make a long story short, we ended up leaving early because she didn't feel good at all.

That wasn't the day that I had imagined for my little Emma Grace, but I had to remind myself that this is our new normal and things aren't going to go the way I plan most of the time. Since her sores were getting worse her eating was getting worse. She refused to put the bottle in her mouth and we had to practically force her to eat so she wouldn't get dehydrated. We monitered her closely and realized that she wasn't making enough wet diapers.

We called the dr. on friday night about 11 and he said to bring her in so they could check her over. We had to go the emergency room where they got us right in. Her vitals looked good, but she was a bit dehydrated and her platelets were extremely low. This would explain the bleeding. They said that they would recommend that she stay the night for observation and she could receive platelets and fluids at the same time.

We decided to stay the night so Emma could be more comfortable in a room rather than the emergency room plus we were worried. We finally got into a room at 4 a.m. and fell asleep about 5. Emma had slept most of the night so she was ready to wake up at 8 a.m. Jonny and I were not! The platelets and fluid did wonders for her. She was like a new baby! She was discharged at about noon, and we were home again.

Emma was recharged!! She has been eating fabulously the entire day today, and has been in a playful mood. We will go to the dr. tomorrow at 11 and if everything is okay they will admit us on tuesday for 5 days of chemo.

Please pray specifically for:

A good nights sleep for Emma and us

No infections(her counts are way down right now)

No side effects from this round of chemo

A good restful stay at the hospital

A complete healing

Emma holds on to her platelets

A longer visit than expected!

Yesterday morning Emma woke up with sores in her mouth. This is a common side effect from the chemo, but since she did not get them last round we didn't think she would get them this time. The sores cover the inside of her bottom lip and are very painful. We took her to the clinic yesterday because she would not keep her pain medicine down. They checked her out and everything looks good except her sores. They do not want to start another round of chemo until they have cleared. The next chemo medicine that she will get is going to bottom out her blood count and she will be more susceptible to infection. If she has open sores in her mouth then she is more likely to get an infection.

The doctor does not want us to come back to the clinic until monday, and possibly admit to the hospital on tuesday. Although we are happy to be home longer, we know that she needs this next round of chemo and we just want to get it over with.

We didn't make it to the zoo yesterday, but we are attempting to go tomorrow for her 8 month birthday. We figured since she is going through so much that we would throw her a mini birthday party every month. I bought her the cutest sun hat and flip-flops for her trip to the zoo! I will take pictures : )We will only go if she is feeling well though.

Please pray specifically for:

Her sores to heal quickly

No more side effects

A restful nights sleep for Emma

Sleep for Jonny and I

No infections

A good fun day at the zoo

A complete healing

Home sweet home!

We arrived home yesterday afternoon after a long day at the hospital. Emma's chemo level was perfect yesterday morning, but her hemoglobin and platelets were low. So, they had to do transfusions which took about 5 hours total! When we finally got to leave we were so happy!

Emma has been kind of sick the past couple of days. Yesterday she was nauseas and extremely tired and restless. Last night she couldn't keep a lot down and didn't go to bed until almost 2 a.m. I just couldn't get her to calm down. I think it is a combination of nausea and teething, but I'm not sure. She has had a better morning and already enjoyed a visit to grandma's house.

Her AGC is 7000+ so her immune system is great. We asked the dr. if it would be okay to go to the zoo, and she said that would be a great idea. I think we are going to go tomorrow when it is a little bit cooler and hopefully no rain! Right now Emma is taking a nap and then we are just going to relax for the rest of the day. We are scheduled to go to the clinic on thursday for her pre-admit check-up, and then we will admit to the hospital on friday morning. She will have 5 days of chemo, and then we will hopefully get to be home for 3 weeks. That is as long as Emma does not get sick.

Please pray specifically for:

No infections

No more nausea or any other side effects

A restful stay at home

A good day for the zoo tomorrow

No side effects from the next round of chemo

A complete healing

Sleep for Jonathan and I

Another day at the hospital

I forgot to tell everyone the prayer God answered about a week ago when we were worried she would have to have surgery for the abcess. The ultrasound went great and it was all clear!!! God has not failed to answer all of our prayers and we are so thankful. We got to go home that day, and it was our first time we got to go home.

Emma had a long busy day yesterday. She had her spinal tap at noon, and then they knocked her out to put the cathedar in. She was asleep most of the day yesterday and slept through the night. She had a bout of nausea, but after some good medicine she has done great! They scheduled us to come in at 9 a.m., but didn't get the spinal done until noon. This is a problem because they won't let Emma eat after midnight the night before. She was able to have clear liquids up until 6 a.m. but when I woke her up she gave me a mouthful! So I put her back to sleep with nothing in her tummy : (

They called us down for the spinal, and then they realized they had the wrong dose and needed to reorder. So, we waited a little bit longer and got it done. Then about an hour or so later they gave her medicine to relax her so they could put the cathedar in. Well, it knocked her completely out : )

Today is a relaxed day. Not a lot going on just waiting for the chemo levels to clear. They will give her a rescue drug to also help flush the chemo out. The doctor said that we could possibly go home tomorrow if the level is good.

Please pray specifically for:

The chemo to flush quickly

NO side effects

No infections

A restful nights sleep for Emma

Enjoying our time at home!

We have been home since yesterday afternoon. Emma cleared the chemo extremely well and has been feeling good. She had a little bit of nausea this morning, but I called the doctor and they prescribed some meds to help her out. We had to make a visit to the clinic today because when I had trouble flushing and heplocking her central line. They said we needed to come in so they could get the clog out.

They did a cbc and Emma's counts were great! She is producing her own platelets now which are almost normal and her agc was 7700. This means that she has a normal immune system and is able to fight off infection. This makes our trip home even more enjoyable because we are not stressing about her getting sick. She can still get sick, but not as easily. Since we went to the clinic today and she is looking well, we won't have to go back on thursday for her pre-admit exam.

Today Emma and I were playing with her toys on her quilt and she leaned forward and fell on her hands. She then pulled her legs around so she was on her tummy! I was so excited I thought she was going to start to crawl!! So, I tried to put her toys further in front of her so she would have to reach. Well instead of catching herself with her hands, she face planted into the ground. She got the saddest look on her face and just started crying. I felt so bad because I made her reach so far, but I just want her to crawl so badly. Oh well, it's a step forward : )

We will go back to the hospital on friday morning for another round of chemo. Please pray specifically for:

Emma to continue to feel well

No side effects from chemo

A restful stay at home for all three of us especially Emma

No infections

A complete healing, no relapse!

Methotrexate!

Emma is going on her second day in the hospital with her second round of chemo called methotrexate (sp?). She has tolerated the medicine well so far and we think she will do just fine. Her cathedar was not working properly so they had to put another one in. So far it is working ok, but we still have to change her about every 2 hours. This chemo is very toxic for Emma and ourselves, so we must wear gloves when we change her. We also have to make sure we don't let it sit on her skin too long.

She should be able to flush the chemo out within 48 hours, but in some cases it takes longer. We are hoping to go home sometime monday, but nothing is set in stone. I am attempting to make this new lifestyle my "normal", but I am having a tough time. While at home I had a lot of plans to get everything organized and cleaned up. Since we are having to come back to the hospital so often, I wanted to have bags ready at all times. When I first tried to get some things done I put Emma in her jumpy seat right in front of Praise Baby. Before she was diagnosed she would sit for at least 30 minutes while I worked on other things. Now as soon as she sees me or even hears me she fusses until I pick her up. Being in the hospital has really affected her, and the fact that I was by her side 24/7 for 36 days. I did take a few breaks, but her and I have become very close. So, I left my house a mess and was not able to organize.

While I was praying and telling God how much I was stressing out, he told me to calm down. This is our "normal" now and I need to just go with the flow and deal with it. So, everyday I am attempting to just go with the flow. Jonny has been extremely understanding with me and hasn't put me in my place yet : )

The game plan for the next few weeks go something like this. If we get to home on monday we will more than likely come back to the clinic on thursday to see if her counts are okay to start chemo again. If it is a go, we will admit on friday and start the chemo. She will get the same chemo she is getting now, and we will discharge as soon as it has flushed through her system. Once we discharge from that we will come back for 5 days of chemo. Hopefully everything goes well and we will get to go home after the 5th day. This all depends on Emma's counts and no infections. After all of this we will start from the beginning. We will be in the hospital again for 3 weeks while she does chemo. We are hoping that she will not get an infection again so we can go home after the 3rd week. This is all tentative and depends on how well Emma reacts to everything.

She is having a good day today and is taking her morning nap right now. Please pray specifically for:

No side effects from the methotrexate(sores, nausea) and long term side effects

No infections

She flushes the chemo out so we can go home monday

A restful night sleep for Emma

A complete Healing

Back in the hospital

Emma was admitted this morning for her next round of chemo. She had her spinal tap around noon and they also tried to insert a cathader. This did not go very well and it took 5 nurses before they could get it in!! She was not a happy camper at all and has slept most of the day. I can't say I blame her either.

We haven't heard about her counts yet, but she has had a high dose of chemo which will be flushed out of her body for the next 24 hours. We then have to make sure the medicine level is appropriate before we are released from the hospital. I will keep everyone updated once we know more information.

Please pray specifically for:

No side effects from this medicine

No infections

A restful nights sleep for Emma

Good results from the spinal tap-No Leukemia

Home

Today is our second day home and we are loving it! Emma has been feeling good and we had a restful nights sleep last night. Well, Emma and I did : ) Jonny said that we took up the entire bed and he had no room. Emma slept about 4 hours in her crib and then the rest of the night in our bed. I think she gets scared when she wakes up because she hasn't been home in over a month. My wonderful friend Diana got me a raindrop massage tomorrow morning that I am really looking forward to.

We go to the clinic tomorrow to check her blood counts to see if we can start the next round of chemo on friday. If everything is a go we will check into the hospital friday morning and start chemo that evening. The chemo medicine that she will be receiving is very toxic and will have to totally clear her system in order for her to go home. It could be anywhere from 48 hours to a week.

Please pray specifically for:

A restful night sleep for Emma, Jonny, and I

Emma's counts to be good so she can start the next round of chemo

A short stay in the hospital this round

No or minimal side effects from the chemo

No infections

A complete healing

~Emma's Shirts~

We have made t-shirts to help raise awareness of Infant Leukemia. They are $14.00 a piece and you can pay by credit card or give the money to Dawn Williams or Allison Williams by check or cash. Credit card would be the easiest for us since we would like to order them after we receive the money. You can send your credit card info to jessjoycewilliams@yahoo.com. The price of the shirts are at cost and this is not a fundraiser. We just want to raise awareness for this cause and remind people to pray for our precious Emma Grace! We would like to order them by the end of the week, so just let me know. I have attached a picture of the t-shirt for you. They also have children's sizes

Mother's Day!

Today was the perfect mother's day!! Emma woke up smiling which is the best gift I could ask for. We even made her laugh which is the best sound in the world. She and Jonny got me my favorite Godiva chocolates and two sweet mother's day cards. But my favorite part about the entire day is I got to spend it with my two favorite people in the world. The doctor also said during rounds that she can't officially say it, but she did say that Emma is in remission!!!!! It is still early, but we are very encouraged by her words. We will let you know when this is actually official too : )

Emma hardly fusses anymore except when she is being messed with. She is very tired of having her blood pressure, temperature, and oxygen intake taken every four hours. On top of that she has to take some medicines orally which she hates. Other than that, she is the happiest baby. From 1 to 5 every day the nurses unhook her from the fluids and let us take her on a walk and play in her jumpy gym. Her counts are up to 4800 which is normal for a baby. She is now able to fight off infection just like everyone else. This has definitely eased our minds about her getting infection and we have become a little more lenient about taking her out of the room.

We are anxiously awaiting the ultrasound tomorrow to see if the abscess is still there. We are confident that no matter what they find she will be fine. God is holding her so tight right now and has given our family a peace about the entire situation. If the ultrasound is good we will get to go home tomorrow thru wednesday or thursday. I'm going to beg and plead for thursday though : ) Then they will start the next round of chemo.

The next chemo medicine is a very toxic medicine and will more than likely require Emma to get a chathedar. We would like to avoid this at all possible, but they don't want it to touch her skin so she won't develop a diaper rash that will turn badly fast. And since she won't have any white blood cells after the treatment, this will be another site for infection.

Jonny and I had a chance to go to dinner with our wonderful small group tonight. It was so nice to get somewhat dressed up and do something normal. When I say dressed up I mean jeans instead of sweats, and I wore jewelry!! When we got back Emma was her normal happy self just playing with grandma and grandpa, and of course watching Praise Baby.

Pray specifically for:

A good report on the ultrasound, no abscess.

A good restful night of sleep for all three of us.

No infections

Her counts continue to recover over the next few days.

No side effects for the next round of chemo(one of the long term side effects is learning disabilites. She may not comprehend things as easily and she may have attention problems. These are things they have seen in some children chemo patients.)

A complete healing!!!!

What a long week!

Emma has been doing well the past couple of days. She has been smiling and playing almost like normal. We think she might be in a little bit of pain after her surgery, so we give her morphine as needed. We also think she is still teething which is adding to her pain. She has been sleeping better at night, but still gets up early ready to play. I am trying so hard to get her on some sort of schedule, but with all of the nurses and doctors checking on her all of the time it is hard to keep it. Her white blood cells have recovered and are at 780 as of today. This is a fabulous number so far and we pray that she continues to produce more and more. There is no sign of leukemia in those cells also. Her platelets are still low along with her red blood cells, so they will be doing transfusions to help raise those.

Jonny went to urologist on wednesday because he has been having some pain which they thought was an infection. They found 3 kidney stones, one in his bladder and one in each kidney. The one in the bladder was too big to pass so they decided to operate on thursday to remove it. I know they say that it is such a simple procedure, but he is my husband. I was so torn between going with him to the procedure or staying with Emma. I decided since Emma was feeling well, I would go with Jonny but would be ready to come back if anything happened. Jonny's grandparents were more than happy to help us out too. His grandma stayed with Emma along with my wonderful friend Callie, and his grandpa and I took Jonny to get the operation done. The operation went great, and they are sending the stone off to see what its composition is so we can prevent these in the future. The stress of the situation did not cause the stones, but it caused the movement of the stone. Jonny and I are trying to figure out a way to deal with a stress so it doesn't affect our health. Jonny is back to normal today and even got out to get a haircut and some lunch with his buddy Gerod.

Emma had a CT scan on tuesday because her stomach was puffy again and she was spiking fevers. They also wanted to make sure she didn't have a fungal infection instead of bacterial. They said that they found a little spot of pneumonia on her upper lobe and what they thought was inflammation of the appendix. They said that this was nothing we need to worry about now and that the antibiotics that she is on would take care of it. They have her on at least 4 antibiotics along with an anti-fungal medicine so they thought she should be covered.

On thursdays the oncologists have a big meeting with the surgeons, PA's, residents, and students to discuss the patients. They all reviewed the CT scan from tuesday, and thought that she may have an abscess above her bladder. The oncologists want to wait until monday to see if it is small enough for the antibiotics to take care of it. If it is still there monday then they will operate. They will go in and drain the abscess and check out all of her other organs to make sure they are okay. The surgeons have been in everyday to check her out so they are keeping a very close eye on her. If she is clear on monday they will think about sending us home for a couple of days before starting her next round of chemo.

This has been a very stressful and tiring week, but through it all God has given us the energy and strength to get through it. He has given such wonderful family and friends who have been there since day 1. We want to thank everyone who has loved and supported us throughout this journey so far. We appreciate the time and thoughtfulness you have put in to make our lives easier.

Today is a fabulous day! Emma is happy and Jonny is healthy again : ) Praise God!!!

Pray specifically for:

No surgery on monday. Pray that the abcsess is gone by monday.

Her counts continue to recover.

Minimal or no side effects from the medicine and chemo.

No infections.

Mine and Jonny's health.

The central line is in!!

After waiting almost all day for surgery, Emma finally got her central line in this afternoon. We were hoping that she would get it, but the doctors weren't sure it would be possible today. Because her counts are so low and she has been feverish, they said that this was not an "ideal" time to do the surgery. But the pros outweighed the cons and they continued on with the surgery. The surgery was successful and Emma is doing great!

Emma's white blood cell count is 12% which is a great start! We are still trying to understand how all of the numbers work, but what we do understand is that Emma is starting to rebuild her immune system. She has had a platelet and blood transfusion today as well. Hopefully soon we will see Emma generating her own red blood cells, and platelets.

Emma is going to be sore from her operation today, we ask that you would pray that Emma's pain or soreness will be minimal. We also ask you to continue to pray for a complete healing for Emma. We thank everyone for their thoughts and prayers Emma is doing great through the first month, but we have 10 more months to go. Please pray for strength for all of us, we love you all.