Sunday, December 13, 2009

Getting Caught Up!




Sorry it has been so long since I have blogged. Things have been quite crazy for our family the past few weeks, and it is nice to be able to sit down and do this. Emma's Great-Uncle John passed away unexpectedly on November 19. It has been very hard on the family and always will be. He was an amazing man who touched each and every one of our lives in a different way. We will miss him so much! It has definetly made us appreciate eachother so much more and not take our family and friends for granted.

Emma has been doing so great! She had a spinal on monday, which made her a little nauseaus. She had to stay about an hour longer so they could run fluids to make sure she didn't dehydrate. She was a little out of it the rest of the day, but by Tuesday she was her normal self. She will continue to do daily and weekly chemo treatments thru April. She has a five day stay coming up mid-January, and then is done after that. We are so ready for this all to be over and get back to normal!!!

Emma is cruising around the furniture like a pro now, and crawls so fast. She has started to stand on her own, but has not taken that first step yet. I'm hoping it will be soon! She has 7 teeth now and is saying some words. She says, "cracker", "night night", "cat", "hi". She also says mama and dada and knows exactly who we are. She can do the baby sign more if she sees something she wants too. She is such a joy in our lives and we enjoy each and everyday with her. If Emma is around, we are always laughing. Her new best friends are her cousins Rachel and Hannah. And her cousin Matthew is trying to teach her how to say Bueno : )

On another note, Jonny and I found out that we are going to have another baby in August. We were not planning on this, but are very excited. Emma is going to be a great big sister! She has no clue what we are talking about when we talk to her about it, but once the baby gets here she will know : )

Please pray:

The Griffis family (Great Uncle John's family)

No side effects from chemo (short term or long term)

Emma continues to stay in remission FOREVER!

A restful week for our family




Tuesday, November 17, 2009

A long 5 days!

Emma has comleted 4 days of chemo and will finish tomorrow and be discharged in the early afternoon. She has done very well and has had no side effects. Her IVIG infusion was great and she didn't have a reaction. They will be doing blood work tomorrow to check all of her counts to make sure she is good to go. We will still keep her in the house most of the time because of the flu, but the dr. said that she is as protected as she can be. She will start her neupegen shots on thursday to help boost her white count.

We are so excited to go home! Emma gets 2 weeks with no chemotherapy and then she will start up again with 7 weeks of outpatient. 5 of those weeks she receives an oral chemo which is taken at home everyday. This chemo usually doesn't cause her to be sick, it's more of an inconvenience because she has to take it before bed on an empty stomach. Well, she is used to getting a bottle at bedtime so we have had to move some things around. Whatever works I guess.

On a different note, Jonny's uncle John Griffis is still in a medically induced coma at presbyterian hospital. The doctor's have done all that they can do and said that the swelling in John's brain needs to come down. We had an awesome prayer with family and friends, and believe that God can still perform a miracle in John! We continue to pray throughout the night for a complete healing of John, just like he did in Emma. God is Good and he will be with us through it all.

Everyone remember to tell your family and friends how much you love them on a daily basis! Stay close to your family and friends, but most of all, stay close to God.

Please pray for:

John Griffis

John's family, pray that God will give them peace

Emma's last day of chemo

No side effects, short or long term

She will stay in remission

A restful 2 weeks off of chemo

Sunday, November 15, 2009

Emma's chemo and Great Uncle John

As Emma was being admitted for her 5 day in-patient chemo treatment, her great uncle John Griffis was across the walkway at Presbyterian Hospital being treated for a head trauma. He was roofing saturday morning and fell off the ladder and hit his head. Luckily his son was there and called 911. He was rushed to the emergency room where he underwent surgery and was stable. After the CT scan this afternoon they realized that there is still bleeding and swelling of the brain. He is currently in a coma and they will repeat the CT scan tomorrow morning to see if there has been anymore damage. Our family gathered around his bed this afternoon and had a healing service. We are praying for a complete healing of John's body. Please pray that he fully recovers from this. Pray for his family who have very heavy hearts right now and are still in shock. It is not easy to see your family member in that condition. Pray that God gives them a peace in this situation. God has already given our family one miracle and we are ready for another one!!

Emma is on day 2 of chemo and is doing very well. She has had no side effects from the chemo and is now receiving an IGIV transfusion to help boost her immune system. This is a 6 hour transfusion and can have the same reactions as a blood transfusion or platelet transfusion. She is 2 hours into it and so far so good! She is getting extremely restless in the hospital because she is not able to crawl around and cruise on the furniture here. She has a catheder and is hooked up to fluids, so she can only go so far without risking pulling those out. She will have 3 more days of chemo and is scheduled to go home on wednesday. Please pray that she continues to have NO side effects from the chemo here or at home. Pray that the Lord protects her brain and organs from long term side effects from the chemo. Pray for a restful stay at the hospital for Emma and our family.

Tuesday, October 27, 2009

Pumpkin Patch and More!











Emma has been feeling GREAT this past month, and ever since she started the maintenence phase of her chemo. She has had only 1 day of nausea, which is just amazing. She is developing great both physically and mentally. What a blessing! God continues to hold her and protect her little body. We are thankful everyday!! She is cruising around the furniture like a pro now and is a very fast crawler. We think she will probably be walking by Christmas if not before. She is very vocal now, but we don't understand what she is saying most of the time. She has a love for music, especially worship songs. She even dances when she hears the music and daddy has taught her to head bang : ) I think her new favorite video now is Barney's top 20 music countdown. Thanks Great Grandma Ruby!!
Her appetite is off and on now. She has eaten some solid foods like rice and chex cereal, but still struggles to get it down. But it is a start! Her favorite food is yogurt, especially white chocolate strawberry : ) This is my favorite also! We used to share, but she can now eat the entire 6 oz. Her weight at her last check-up was 15 lbs 6 oz. We can't wait until she is 20 lbs so she can be moved to the forward facing car seat.
We visited the pumpkin patch yesterday and had a blast. She loved the petting zoo(although we did not let her touch the animals). She also went on a pony ride, hay ride, and walked through the hay maze. She then helped me pick out her pumpkin! It was a great day!
She has 2 more weeks of outpatient chemo and then she will be inpatient for 5 days with a stronger chemo. She has had the chemo before, so we expect everything to go great. After that she will have 2 weeks off and then 7 weeks of more outpatient chemo. During that 7 weeks she will get 2 spinal taps. After the 7 weeks she will have 1 more inpatient stay for 5 days and then she is done staying in the hospital!! Woohoo!!! Then she has only 9 more weeks of treatment before she is done for good. WOW! We are looking at the end of April.
Please pray:
Emma's health during this flu season
Her 5 day inpatient stay
No side efffects from chemo
Her growth and development
Our family's health

Tuesday, September 29, 2009

Happy 1st Birthday Emma!
















Emma turned 1 years old today! Wow! This year just flew by! Our family has so much to celebrate today. God blessed us with such an amazing girl who has taught us many lessons throughout the year.

Emma has been doing great this month. She had an outpatient spinal tap, bone marrow, and chemotherapy treatment last tuesday. She was such a big girl and did beautifully. After her procedures, she had a kidney function test. The test came back good. We haven't received the bone marrow test results, but are confident they are good. She will receive more outpatient chemo tomorrow morning.

We started out the morning with pancakes for the birthday girl. She didn't eat any, but had fun tearing them up and making a big mess : ) Jonathan had a CT scan today on his abdomen for some discomfort he has been having. We are not sure if his kidney stones are causing the problem or something else. The doctor thinks it is partially stress. We hope to get the results tomorrow. After his test we got some chick-fil-a and then the family took Emma to the zoo. She had a great time and got to see lots of cool animals : ) We then came back and I made enchiladas and homeade guacamole. It was really yummy and we had a good time!

Please pray for:

Chemo tomorrow(no side effects)

No infections

Continued remission

Jonny's health

Saturday, September 12, 2009

Home Early!

Well, our little girl has done an awesome job again! Her counts recovered so fast and she has been feeling so good, the dr. let her go home yesterday. Just 11 days after being admitted! We were so surprised and excited since we were expecting to be there for 3-4 weeks! God answered all of our prayers and so much more! Emma didn't seem to have any side effects(other than a little nauseau) and is developing perfectly. Here appetite has recovered too.

We got to come home yesterday evening and sleep in our own bed. She had a little bit of nausea last night, but seemed to be feeling great today. She had a busy day of visiting her grandparents and playing. We are not sure what her counts are, so we are keeping her away from the general public. Jonathan and I have discussed not going out much this winter so we can stay healthy and keep all the flu germs away from Emma.

Not much else going on here. I am trying to figure out a good time to have her birthday party and I really hope it works out. Thank you everyone for your prayers...please keep them coming!

Thursday, September 10, 2009

Crawling!






Emma has a had a great week here at the hospital. She is able to get unhooked from fluids from 10 a.m. to 8 p.m. everyday which makes a lot easier to play and have fun! She has now mastered crawling and is always wanting to move! If she's not sleeping, she is trying to go somewhere. Her being mobile is a bit challenging at the hospital because the floors are so stinking dirty : ( They have provided us with mats for the floor which makes it easier. She also pulled up to her feet and is able to walk around the crib holding on. She thinks she is pretty big stuff : )
Her first birthday is just around the corner and I have a lot of planning to do. Jonny and I decided that we want to throw a big bash when her counts have recovered. We are setting the tentative date of October 4th, but if her counts aren't up we will have to push it back. We have so much to celebrate! She even got a pink car which can be pushed like a stroller. We gave it to her early so she could use it here. We go on about 3-4 walks a day in her cool car.
This hospital stay has been extremely difficult for me. I am getting very bored and restless. Emma isn't sleeping well, which means mommy and daddy aren't sleeping well. When she first arrived here, they did meds and vitals at midnight which woke her up. Then she decided that since she was up she might as well play : ) Now, she wakes up at midnight, even though she's not getting meds, and wants to play. When we finally get her to sleep, it is 2 a.m. or after. Poor little girl is just so out of sorts from all of this. We will be ready to get home.
Her counts are very low right now, so we are being extra careful. She got a blood transfusion last night, and I think her platelets are low so she will probably get a platelet transfusion soon. Even though she is low on everything, she still has a lot of spunk. She is always up playing and talking! It is so refreshing to see her feeling good : ) God is just working through her little body daily! Thank you Lord!
Please pray for:
No side effects from chemo
Counts to recover quickly
No infections
Restful nights sleep
Protection of Emma's body from chemo and other meds
Continued remission

Tuesday, September 1, 2009

Relief

Thank you everyone for your prayers the other night! Emma's counts came back clear with no leukemia. It was just a bruise from being so active lately. The dr. said it is perfectly normal to react the way we did because that bruise reminded us of the first time she was diagnosed. She has started her chemo today, and so far so good. This chemo is known for causing nausea, vomiting, mucuous in her eyes all the way down to her bottom, and more. Yikes! Some of these are more common than others, but I sure pray she doesn't have ANY!

She will get this chemo twice a day for 2 days and then we wait for her to recover. She started her eye drops this morning, and hated them! We have to do these every 4 hours along with the mouthwash. This means no sleep for the next couple of weeks : ( I must have slept too much in college, and am now being punished ; )

I will update the blog once her chemo is finished and there is more to report. Have a great week everyone!

Monday, August 31, 2009

Jonny and I had a scare last night. While I was flushing Emma's lines, I noticed a tiny bruise and bump on her stomach. This was almost like the one she had when she was first diagnosed. Immediately I yelled for Jonny and told him to call the dr. All of the horrible memories came back from that first day she was diagnosed. But this time I knew that it would be considered a relapse, and they would go to a bone marrow transplant next. As we were waiting for the dr. to call, I started to pack our bags for the hospital. I don't know why, but it was my first instinct. Emma's primary dr., Dr. McNall, called back and said that she wasn't worried about the bruise. She said that if her lymphnodes were swollen and she had that bruise, she would be worried. But Emma's lymphnodes were fine.

She said that it would be almost impossible for the blasts to grow that fast, and since her cbc was clear on thursday, she said she shouldn't have any blasts. We felt a little bit better after we heard from the dr., but we just couldn't shake the bad feeling we had. We tried to convince ourselves that if she had a bruise anywhere else on her body, we wouldn't even think twice about it. But we are still scared. Home health care is going to come out today to do a cbc to see if Emma's counts are good enough to admit tomorrow for chemo. So we should know if her blood is clear or not for sure today.

We realized again last night that the worry is never going to go away. God has given us such a beautiful gift which can be taken away at any moment. Why have I been stressing over the smallest things this week!? God taught me last night to stop stressing out about my messy house, finances, and all of other stresses in life, and hand them over to him. He WILL take care of everything, and I can't always have control. No matter what happens, God is taking care of us. He has already shown us numerous times since Emma was diagnosed.

Please pray for:

Emma's CBC to come back clear today

Next round of chemo(No side effects, No infections)

A restful stay at the hospital(3-4 weeks)

Peace for Jonny and I

Emma stays in remission

Sunday, August 23, 2009

11 Months Old

Emma will be turning 11 months old on the 29th! Wow, time has flown. I can't believe I have to start planning her first birthday party already. Before she was diagnosed, I had envisioned a huge first birthday bash with all of our friends and family. Now, we may have to settle for something small. Regardless, we have a lot to celebrate. If Emma's counts are good, we will probably go ahead with our big bash. But if they are low, we may postpone the party or just do something small. If she is in the hospital on her birthday we are going to throw a mini party with the nurses.

Emma's counts have been really low this past week. She will begin another round of chemo as soon as her counts recover. We have a clinic appointment for a CBC to see where they are at. Jonny is going to take us tomorrow which is nice because we will get to spend the afternoon together : )

Emma has had a few episodes of nausea, but all in all she has been feeling good. She is still trying to crawl, and will walk if you are holding on to her. She is able to stand on her own while holding on to the couch or crib. She is talking a bunch too! We wake up to her talking every morning...what a treat for us! There is not much else to report here. Thank you everyone for your continued prayers! Have a fabulous week!






Thursday, August 13, 2009

Blood Drive and Next Round of Chemo!







Jonathan, Emma, and I would like to thank everyone for donating blood on Sunday in Emma's name. THANK YOU THANK YOU! We haven't gotten the final result from the blood bank, but I will let you know. We appreciate your donations so much! I was anemic on sunday, but am going to try to donate later this week or next.






Emma has been in the hospital since tuesday morning getting another round of chemo. She will get chemo through saturday, and we should be able to go home saturday evening. Unless she has to get a blood transfusion, then they will keep us until sunday. She will start her nupigen shots on monday to help her rebuild her white blood cells. When she makes counts, she will admit for the two days of high dose aricie (sp?) and then they will keep a watch on her. This chemo will totally bottom out her counts so we will have to be extra careful washing our hands and hers.






She has done extremely well with this round of chemo, and is acting like a normal 10 month baby. She has hit the stage where she doesn't want to sleep at night, and fought me for 45 minutes last night. I feel sorry for our neighbors : ) We are going to let NaNa put her to sleep tonight just to see if she will fight her. She is not taking very good naps either, but it is really hard on her being in the hospital. It messes up her entire routine. Plus, she is getting 2 chemo's a day which is very hard on her little body.






Please pray for:






A restful stay at the hospital






No infections






Protection for her body from the chemo






Emma will stay in remission






Friday, August 7, 2009

Garage Sale

It is 7:30 a.m. on friday and we are sitting out in the hot and humid garage having a garage sale. Emma didn't make her counts on wednesday so we are planning to admit on monday if she makes her counts today. We planned on having the garage sale next weekend, but plans changed when we found out that she would be in the hospital next week. So, with the help of Jonny's parents and grandparents we got everything ready. We have already sold our dining room table and some odds and ends. I will update the blog once I know how Emma's counts are today. I hope everyone has a great weekend!

Tuesday, August 4, 2009

Week 13 of Chemo

Emma will begin week 13 of her 48 week chemotherapy protocol thursday. She will be receiving Cytoxin and Mesna for 5 days. This is an inpatient chemo treatment and tends to make Emma sick the first day. We will go into the clinic tomorrow afternoon for her pre-admit and then admit thursday morning. She will then get a week off and then start the Aricie (sp?) which is given twice a day for two days and then will stay for 3-4 weeks so they can keep a good eye on her.

She has been feeling well since the last round of chemo. She got a little nauseaus on sunday and had to have a platelet transfusion on monday, but other than that she has been happy and playful. We think she has some sores in her nose from the last chemo because she has been getting minor frequent nose bleeds. I think the main thing that bothers her is swallowing the blood which makes her nauseaus. God has continued to answer our prayers and kept Emma in remission. I thank him for everyday I get to spend with her and for protecting her body from this chemo. We serve a powerful and faithful God!

Jonny's golf clubs were stolen out of his truck last week along with some tools. This isn't the first time we have had stuff stolen, but the nerve of those people to actually steal a man's golf clubs! : ) So, since then Jonny has been eating and sleeping new golf clubs. It has been very important to replace every single club as well as accessories. Today Emma and I went to Golf Galaxy with him to get the last wedge to complete his set. I was also informed that you need more than 1 wedge to complete your golf set : ) He also purchased a new towel, golf balls, hat, and a cute hat for me : ) Now he just has to find time to play!

We want to thank everyone for your continued prayers! Everytime we go out, we hear from different people that are praying for her and our family. We love to talk to everyone and how Emma's story has affected their lives.

Please pray for:

Next round of chemo

A restful stay at the hospital

Continued protection on Emma's body from chemo

Our families health

Emma to stay in remission

Monday, July 27, 2009

Feeling Great!

Emma just completed another round of chemo last week, and is doing great! She was a little out of sorts on thursday because she had a spinal, but by that evening she was normal happy Emma. She did receive a cathedar which fell out the first night and leaked the second night. So she had 3 cathedars put in in 3 days! She is sleeping in the hospital crib by herself now, so I actually get to sleep on the couch or chair.

She will admit again on Thursday for another round of the high does methotrexate and then the following week for cytoxin and mesna. That treatment will be for 5 days and we will be discharged on the 6th day. After that we will wait for her counts to recover and then she will start another round of chemo. This is a brand new chemo med that she hasn't had yet. It is called high dose aricie (sp?). She only gets 2 days of this, but they are going to keep her for 3 weeks in the hospital. About 20% of children get a blood infection from this chemo and they would like to keep a close eye on Emma because she is so young. After that, our in-patient visits will not be as often or as much.

Ugh! 3 weeks in the hospital!! Jonny and I can handle it just fine, but poor Emma. She gets so incredibly restless being in the hospital for just a few days, but 21 days just might push her over the edge! She has been such an amazing little girl through all of this. She is always so happy. She is very talkative right now and is able to wave bye bye. She will also dance if you ask her to (although she doesn't do it every time you ask). She isn't crawling yet, but can roll where she wants to go and is also very good at scooting sitting up and on her tummy. She is a mama's girl right now and cries everytime I leave the room. It is very sweet, but sometimes I find it hard to leave even when I'm just going to the bathroom : ) Maybe this stage will pass soon. She is sleeping in her crib about 2-3 hours and then cries until we put her in bed with us. As soon as she hits the pillow(she has her own pillow in our bed), she looks at Jonny and smiles and then looks at me and smiles. Then she closes her eyes and falls asleep. Boy does she know how to work us : ) Although Jonny and I don't sleep well with her in our bed because she takes up all the room, we enjoy those moments with her.

Please pray specifically for:

Next round of chemo

No side effects from chemo(short term or long term)

A restful stay at home

New chemo treatment(no blood infection or side effects)

Jonny and my health

No relapse

PRAISES!!

Emma feeling great

Our health

Emma's development

Thursday, July 16, 2009

Another Week at Home!










Emma wasn't feeling well on the 4th of July, but we got to celebrate twice because they didn't do fireworks until the following friday. She was in such a great mood and feeling well so we kept her up to watch the fireworks. She seemed to enjoy them, but she was so tired that it wasn't the reaction I was expecting. She sure looked adorable in her outfit though : )
She has had a fabulous time at home with the majority of good days. We have taken her out because her counts have been great, but we have to stay indoors because of this horrible heat! Maybe we will get a break this weekend and we can do something outside. Emma isn't able to get her central line wet, but maybe we will just stick our feet in the p0ol!
She had a pre-admit appointment yesterday but her platelets were still too low to start another round of chemo. Her hemoglobin was also on the fall so she may have to have a transfusion tomorrow. She has been a little pale and sleeping more than ususal so a transfusion maybe a good thing. They scheduled her an appointment for tomorrow morning for a cbc to see if her platelets and hemoglobin will recover on their own. She will then go in for a pre-admit appointment on wednesday and a possible admission on thursday. Another reason for the week break is to clear up a bad diaper rash she has had. It has improved tremendously, but they would like for it to be completely gone before starting the methotrexate. This chemo is known for causing mucoucitis which can cause sores in her mouth all the way to her bottom : (
So, we are happy that we get another week at home with our little girl! She was able to go to daddy's softball game and take a picture with the team who has been playing for her. We have also been shopping a few times because she enjoys it so much! Oh no daddy, she may already have a shopping problem : ) I know I do when it comes to buying stuff for her. I keep telling everyone how she has too many clothes, but then I come home from the store with 3 new outfits! I think it is impossible for me to come out of store without buying something for Emma.
She is really trying to figure out how to crawl, but just gets so frustrated. Instead of saying "dada" and "mama" she is just clicking her tongue. She has also developed this laugh that sounds fake, but I think it is just her laugh now. It is precious! We are working on eating more solid foods too. She has a problem with the textures of foods rather than the taste (or atleast thats what I think it is). The nutritionist said to try at least 25 times before giving up on a food. Boy do we have our work cut out for us! My parents are in town this week so she is enjoying spending time with them, and I'm enjoying the extra sleep : ) Poor Jonny has to go to work and is getting no extra sleep. Plus he is having to work in this horrible heat!
We praise God everyday for Emma's health. She is still in remission with no signs of leukemia blasts! I guess I just thought that she would be so much more sick on chemotherapy, but he has protected her little body from that. I'm not saying that she doesn't feel bad, but even on those days I feel him swoop her up in his arms to get her through it. I still don't understand why she has to feel bad, but what parent understands that anyway. Never did I think that I would be able to handle my child being sick with a life-threatening disease, but God has given me a strength I never thought I could have.
Praises:
Emma's remission
Minimal side effects from last round of chemo
Protection of Emma's body from chemo
Prayer requests:
Continued protection of her mind and body from chemo
No side effects from next round of chemo
Her hemoglobin and platelets recover on their own(No transfusion and she can start next round of chemo)
A restful stay at home
Mine and Jonny's health so we don't get Emma sick
Healing of her diaper rash
Protection of Jonny from working in the heat

Tuesday, July 7, 2009

Nike Women's Marathon to benefit the Leukemia and Lymphoma Society









On April 5, 2009 we took Emma into the emergency room to check on the unusual brusing she had developed. That morning we found out that she had ALL. In triage our nurse, Cherlyn, checked Emma out and was with us when the doctor brought the news. Cheryln, along with her daughter Camber, have decided to run in the Nike Women's Marathon to benefit the Leukemia and Lyphoma Society in Emma's honor. We would like to ask everyone for their support. Their goal is to raise $3800 each. You can make your 100% tax deductible donation, keep up with their progress, and give them encouragement online at pages.teamintraining.org/ok/nikesf09/ccraig.

This is such a wonderful thing that they are doing to benefit LLS. There are so many wonderful people out there who have and are giving their time to benefit such a worthy cause. We are so thankful for Cherlyn and Camber! Because of people like them, Emma is in remission!

Friday, July 3, 2009

It's Official!

Dr. McNall called me yesterday to let us know that the final results came back from the bone marrow, and Emma is officially in remission!! Praise God! They didn't find 1 blast in 100,000 cells : ) This is great news for us and such a huge weight lifted off our shoulders.

We have been home for a week tomorrow and are loving every minute of it. Emma had a clinic appointment on wednesday for a cbc and a quick chemo treatment. Her counts have almost bottomed out so she is extremely neutropenic. We are being careful to wash our hands and not take her around huge crowds of people. She has been feeling a little under the weather due to a nasty diaper rash that has been caused by diahrrea. She has had this ever since she got home and it has gotten worse. The drs have prescribed a new medicine that we will try and will hopefully cure the rash. She cries everytime she goes to the bathroom.

We go back to the clinic on monday for another cbc and then on wednesday for a spinal chemo treatment and another chemo called vincristine. Spinals usually make her sick so we will load her up with meds before she goes. She is on 8 different medications at home, three of them are as needed. I have started a notebook so I can keep track of everything that I need to give her and the times I have given them to her so I don't get mixed up. She is getting better at taking meds orally, but still cries because they don't taste very well.

She now has her two bottom teeth in and she makes this clicking sound when she rubs her tongue on them. It is so cute. She also has said "mama" a couple of times, but it is still kind of mumbled : ) She had a good day today and we expect better days once her counts recover. Thank you everyone for checking up on us and I hope you all have a great 4th of July!

Friday, June 26, 2009

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






Sunday, June 21, 2009

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

Friday, June 12, 2009

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


Sunday, June 7, 2009

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!

Saturday, June 6, 2009

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!

Sunday, May 31, 2009

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

Thursday, May 28, 2009

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

Tuesday, May 26, 2009

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

Saturday, May 23, 2009

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

Tuesday, May 19, 2009

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!


Saturday, May 16, 2009

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



Friday, May 15, 2009

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

Wednesday, May 13, 2009

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

Monday, May 11, 2009


~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

Sunday, May 10, 2009

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!!!!

Friday, May 8, 2009

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.

Monday, May 4, 2009

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.

Thursday, April 30, 2009

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


Monday, April 27, 2009

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