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