Sunday, December 13, 2009
Getting Caught Up!
Tuesday, November 17, 2009
A long 5 days!
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
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!
Tuesday, September 29, 2009
Happy 1st Birthday Emma!
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!
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!
Tuesday, September 1, 2009
Relief
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
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'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!
Friday, August 7, 2009
Garage Sale
Tuesday, August 4, 2009
Week 13 of Chemo
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!
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 : )
Tuesday, July 7, 2009
Nike Women's Marathon to benefit the Leukemia and Lymphoma Society
Friday, July 3, 2009
It's Official!
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!
Sunday, June 21, 2009
Another round of chemo
Friday, June 12, 2009
The Clinic Today
Sunday, June 7, 2009
So Nice to be Home
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!
Sunday, May 31, 2009
Recharged!
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!
Saturday, May 23, 2009
Another day at the hospital
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!
Saturday, May 16, 2009
Methotrexate!
Friday, May 15, 2009
Back in the hospital
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
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
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!!
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.