Emma is in Remission!

Emma started her next round of chemo on tuesday of this week. We were very nervous about this round because the chemo medicine's are very strong, but Emma has handled them quite well. She may have had a tummy ache from time to time and loss of appetite, but other than that she has been great! Well, great considering what she has been through. We also got the test results back from the bone marrow and they can officially say Emma is in remission. Praise God!!! Our prayers were answered and have been since the day Emma started chemo. They did send it away to another lab for a closer look and we will get those test results back in about a week.

Tuesday morning we arrived at the hospital at 8 a.m. We wanted to be there as early as possible so they could get started on her procedures. Every time she has a procedure she has to stop eating at midnight the night before, so you can imagine how cranky Emma is when she realizes she's not getting a bottle first thing in the morning. Her spinal chemo treatment, bone marrow biopsy, ppt test(they had to draw blood from somewhere other than her line), and echo cardiogram were all scheduled for 9 a.m. Well, by the time the chemo arrived and the doctors were ready, the procedure started about 10 a.m. Emma was very patient and even took a couple of short naps while she waited. They were also scheduled to put in a catheter a little bit later in the day while giving her medicine that would help her relax.

The procedures went great and they called us in to help with the echo and blood draw. They stuck her 2 times and were unable to get a sample because her veins are so small. So we decided to try to draw it when we did the catheter. She was a little upset when we had to hold her down for the echo, but after about 5 minutes she fell asleep and they got what they needed.

When we arrived back in the room we gave her a bottle and she was starving! We had given her anti-nausea meds right before the procedures and she had no problems. Just a couple of minutes after arriving back in the room, they set up to do her catheter. The medicine to help her relax is oral so we had to wake her up to give it. Of course she wasn't happy about this, but we got the medicine in and it worked right away. First, they tried to draw blood and had no luck. They decided that they could try to get a sample through her line, but sometimes the test results are skewed because of the medicine they use to lock the line. But we all decided that this would be the best option for the time being. The ppt test is to check to make sure her blood is clotting the way it's supossed to.

Next, was the catheter. It went in fine and Emma did great, but we have never really had any luck with catheters since we've been here. Wednesday afternoon the catheter snapped and we were going to have to insert a new one. I begged the doctors to just leave it out and I would change her diapers every hour so she wouldn't get diaper rash. At first they told me no, but after some more convincing they decided to give it a shot. So, I have set my alarm for midnight through 7 a.m. on the hour every hour to change her diaper. Although, this is not my most favorite thing to do, it's better than watching them put another catheter in and Emma having to deal with the inconvenience. I just hope I can do a good enough job and keep her from breaking out! She was scheduled to have a deep muscle shot also which is a long lasting chemo medicine. So, she had 6 different chemo meds all in one day along with 2 procedures, an echo cardio gram, a catheter, and 3 attempts at drawing blood which failed! At the end of the day Emma was still smiling. It just shows you how innocent and forgiving children are. What a blessing God has given our family, to have the honor of knowing and caring for such a beautiful and strong little girl. She has taught me so much these past few months and I have heard numerous times how her story has touched the lives of so many people.

A part of this round of chemo is taking a prednisone(a steroid) which helps the other chemo meds work better. This medicine is very bitter tasting and has always made Emma vomit. They can give it through the IV at the hospital, but at home we have to do it orally. So we decided to try it orally again this time to see how she would handle it. Well, she has thrown it up 4 times! We tried to mask the flavor with orasweet, chocolate icecream, and hershey's chocolate syrup but nothing has worked. So thursday afternoon the doctor called in a prescription for the name brand steroid which is supossed to taste better. We had to use our pharmacy because the hospital pharmacy doesn't carry it for some reason. We were so nervous to give it to her, but if we couldn't get it down her orally, we would have to stay at the hospital until we succeeded. I tried this steroid by the way, and it almost made me sick and I'm not doing chemo. We tried to mask this flavor with marshmellow cream and it worked! She still shivered when she took it, but she has had 2 doses and kept them down. What a relief! Now we can go home : )

Jonny and I are both exhausted because we have gotten very little sleep at the hospital. Emma has had a more restful stay this time and is sleeping through the night and even sleeping through most of the diaper changes. We have two chemo treatments today and should be on our way home early saturday morning unless something changes.

Praise God for:

Emma's remission

Please pray specifically for:

No infections

No diaper rash

No side effects

A restful stay at home

No relapse

Another round of chemo

We have really enjoyed our time at home with Emma. She has an appointment tomorrow at 11 a.m. to see if she will make counts in order to start her next round of chemo. We were in on tuesday and friday of last week, but she had not produced enough white blood cells and platelets to continue on.

Her white blood cells have been high enough for us to take her out, and boy did we take advantage of it. We went out to eat a ton and of course shopping. Today we went to church. It was so nice to see everyone that have been praying for Emma and to thank them. We also made a trip to great uncle Jim's church to show Emma off there.

Jonny just got back from a golf trip this weekend and has enjoyed his time with Emma on Father's day. She has been such a delight these past two weeks and we have had so much fun! We are expecting to admit to the hospital on tuesday for 5 days of chemo and then home. We will be back in the clinic at least twice a week for check-ups and for more chemo, but those should be out-patient.

Please pray for:

next round of chemo

no side effects from chemo

a restful stay at the hospital

a good result on the bone marrow test

The Clinic Today

Emma had an appointment at the clinic this morning to get some blood work done. The CBC showed that her AGC(good white blood cells) are very low at a 7 and her platelets are 16(normally they should be 150+). This was no surprise to us because it took her counts awhile last time to recover. We have another appointment on tuesday afternoon to see if anything has changed. If she has met her counts then we will admit on wednesday for 5 days of chemo.

The nurse informed us today that we may not have to stay in the hospital for 3 weeks this next round. Another baby around Emma's age just went through this same round of chemo, and they let him go home and do outpatient chemo after the first week. They said he did great and they would like to try this with Emma as long as she is feeling well enough. GREAT NEWS!!! We love being at home and Emma loves it even more : )

She has been such a happy baby since we have been home and has only been sick a couple of times with minor nausea. Her new favorite thing to do is watch her uncle Jason's dog, Jade, chase a laser light. She laughs so hard which makes everyone around her laugh as well. We all have such a great time. God has been so good to our family. He brought a beautiful baby girl into our lives who brings us so much joy. So much more than I could have ever imagined! Thank you God for all the wonderful blessings you have given us!!

Emma being mobile is not so far away. She is showing so much interest in getting down on the floor, and she can even get up on her knees. But her arms are not quite strong enough. She can get on her hands and knees for just a split second. She can stand on her legs and hold onto the couch for a few seconds, which makes me think she may skip crawling all together. I'm not sure what she is going to do, but I just know that she will wake up one day and start moving. Yikes!

Please pray specifically for:

No side effects

No infections

Next round of chemo

Emma will meet her counts on tuesday so we can get the next round of chemo over with

A restful stay at home

A complete healing

A clear report on the bone marrow test

So Nice to be Home

This is our second day at home and we are loving it. Emma has had a great day and is sleeping now. Jonny and I were able to go to church this morning which was so nice. It has been almost 2 months since we have been able to go to church! Plus, I actually got to go grocery shopping today! We now have food at our house!!

Emma got her first nupigen shot tonight and did really well. She also ate carrots and applesauce which is a huge step for her. Things are looking great today and we expect the same all week. We have an appointment at the clinic for a CBC(bloodwork) and a check-up on tuesday morning. Please pray that everything goes well!

A Great Week!

Emma will be discharged today for a much needed break at home. She received 5 days of 2 different kinds of chemo medicines and she did fabulously! She had a stomach ache the very first day, but after that she did not have any side effects. She was such a joy everyday just playing and trying to figure out how she is going to get around. She has started to get on her tummy from the sitting position, so I know it is just a matter of time before she is crawling. I'm excited but at the same time nervous because it is hard to keep a crawling baby entertained in a hospital room. Especially when she will be hooked up to an IV.

I celebrated my 27th birthday on wednesday and the only thing I could have asked for is Emma feeling great. And God answered my prayer. He has been so good to us and especially our Emma. Jonny brought me dinner from Bravo's and instead of a cake I got Cuppies and Joe : ) I got to spend the entire day with my family!

Emma said her first word on thursday. As much as I wanted her to say mama first, she actually said "dada". Jonny wasn't here at the time, but she has said it many times since then. This made Jonny's day : ) She has been entertaining the entire family with her continuous talking and playing all week. She woke up this morning at 5:30 and talked until 6 before fussing because she was hungry. Jonny and I just laid in bed and listened to her talk as well as the nurses right outside at the nurses station.

We should be discharged late this afternoon and will have to return to the clinic twice a week until her counts recover. Her AGC (good white blood cells) have to be at least 755 and her platelets 75000. We will start her nupigen shots tomorrow, which will help her rebuild her white blood cells. We will be home at least a week, maybe more depending on how quickly she rebuilds everything. We are hoping for longer, but we also know how important it is to start the next round of chemo too. As far as we understand, we will be in the hospital for 3 weeks and then home until she rebuilds enough to start chemo again. We are actually starting the entire process over again.

Things may change but that is to be expected. We are trying hard to make this our normal now, but I am still struggling. Jonny has started work regularly so he is getting out of the hospital which has been good for him. He misses Emma a lot, but gets stir crazy just sitting around in the hospital. I am also going stir crazy, but am trying to figure out some things to do to keep me occupied. I have started taking Yoga classes, but am finding it hard to get away from the hospital. It will definetly be easier at home.

Please pray specifically for:

A restful stay at home

No infections

No side effects

Next round of chemo

A complete healing!