Day 2 1/2 of oral chemo. Ansley came to me this morning and said," Mamma, why do I have to be sick? When will this sickness leave my body?" Ugggghhhhh. I wanted to scream and cry at the same time. I'm not really sure how to answer that question to a 5 year old wanting to feel healthy again. I pray that come December there is no more cancer. I pray that Ansley never has to take another another dose of oral chemo or have a port accessed again after December.
Please, please pray for her body to be healed. And, pray that the next few days of oral chemo don't become unbearable for her.
Friday, September 23, 2011
Bumps in the Road
We are sitting in the Peds Hem/Onc Clinic today awaiting chemotherapy. We have visited the 10th floor at Rutledge Tower this morning trying to figure out what is causing our baby girl to have a rash all over her body. Chemo did not go on Wed due to the rash. Labs were drawn on Wed and then we came back today. There was some question as to whether or not chemo should be administered today and the final decision was "yes." Funny thing is I am thankful we got to move forward even though that means the net week will stink. I am thankful when we can stay on schedule so that come December, we can be done. I can't help but want to see our precious Ansley done with treatments.
Honestly, it's been a hard week. So many bumps in the road right now. We, as a family, are trying to have life remain as normal as possible yet there are so many abnormalities. I guess I shouldn't say abnormalities, just new stuff. I think days at the hospital, crying eyes, giving meds and rubbing aching legs are becoming quite normal for us.
The challenge for me is to remain hopeful when things don't go as planned. Is my hope only visible when my circumstances are without challenge? I sure don't want to live that way. I have a hope that does not disappoint and His name is Jesus. WHEN bumps arrive, He is my strength and an ever-present help in times of trouble.
This quote was in the bulletin at church a couple of weeks ago and it has comforted my frustrated and weak heart.
Peace, Love and Joy to you all,
Amy
"Circumstances may seem to wreck our lives and God's plans, but GOD IS NOT HELPLESS AMONG THE RUINS. Our broken lives are not lost or useless. God's love is still working. He comes in and takes the calamity and uses it victoriously, working out his wonderful plan of love." -Eric Liddell
Honestly, it's been a hard week. So many bumps in the road right now. We, as a family, are trying to have life remain as normal as possible yet there are so many abnormalities. I guess I shouldn't say abnormalities, just new stuff. I think days at the hospital, crying eyes, giving meds and rubbing aching legs are becoming quite normal for us.
The challenge for me is to remain hopeful when things don't go as planned. Is my hope only visible when my circumstances are without challenge? I sure don't want to live that way. I have a hope that does not disappoint and His name is Jesus. WHEN bumps arrive, He is my strength and an ever-present help in times of trouble.
This quote was in the bulletin at church a couple of weeks ago and it has comforted my frustrated and weak heart.
Peace, Love and Joy to you all,
Amy
"Circumstances may seem to wreck our lives and God's plans, but GOD IS NOT HELPLESS AMONG THE RUINS. Our broken lives are not lost or useless. God's love is still working. He comes in and takes the calamity and uses it victoriously, working out his wonderful plan of love." -Eric Liddell
Thursday, September 8, 2011
almost done!
Almost done with infusion.
she had a good nap and is awake now.
Here today with Gavin and Garrett.
Wednesday, September 7, 2011
Hard Day
Today I saw that Ansley was not herself. And quite frankly, it is hard. She tried to swim and got so tired and frustrated she stopped. I know she is low on energy and puny, but I saw it first hand today. It is hard to see your kids suffer and not feel "normal". I have to be careful with my mind and not feel sad and defeated because she will sense when I feel like giving up. Please pray for strength.
Tomorrow we go into MUSC for an IVIG infusion. It should help with the energy level and also with her counts bumping higher. It is a long process and has some side effects. I would ask you to pray for her and that the effects of nausea, itching, headaches, etc. would be minimal.
We are pressing on and fighting hard but there are times when it seems like nothing but an uphill battle.
Tomorrow we go into MUSC for an IVIG infusion. It should help with the energy level and also with her counts bumping higher. It is a long process and has some side effects. I would ask you to pray for her and that the effects of nausea, itching, headaches, etc. would be minimal.
We are pressing on and fighting hard but there are times when it seems like nothing but an uphill battle.
Thursday, September 1, 2011
COUNTING DOWN
We have begun the 4th from the last cycle of chemotherapy for Ansley. It is very exciting to think about how little Ansley has left as far as chemo. The day has been hard though. She is yucky, achy, nauseated and fussy. Please pray that we can get the yuckiness under control with meds. All in all, we are okay. Ansley is one tough cookie and I am thankful for that!
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Tomorrow
Tomorrow is Wednesday. It has become my least favorite day of the week because I now associate it with chemotherapy. But, the good news is that my boys will be going with me and Ansley tomorrow. She loves having her brothers there. I love that they want to be there! Another "good" bit of news is that after tomorrow, Ansley has 4 more sessions of chemo! We really are beginning the countdown.
Please pray for the port accessing and deaccessing to go smoothly and without pain. Also pray that the day would be relatively short at MUSC.
Pray that I would have the courage to go up to families that are coming into clinic for the first time tomorrow with a new cancer diagnosis.
Sunday, August 21, 2011
Reminders...both good and bad
During this season, almost every day is filled with some tears. That's just how it is right now. Today the tears came from the visual reminders that we have a sick little girl. Whenever Ansley wears a sundress or a shirt without sleeves, her port is very obvious. Of course, it gets many stares and many strange looks as well. Whenever I see it, I am heart broken to think that my baby girl has to have this object in her body to get the chemo into her system to kill cancer. It just shouldn't be this way.
I also have the visual reminder of her cancer when I see her hair. Yes, it is growing back, but a little girl can only be called a boy so many times before her mom feels like punching someone in the face! I wish some people filtered what they thought before speaking. The daily reminders are hard to swallow. Even on "good" days, there are reminders that things aren't okay.
On the other hand, I have a beautiful reminder daily that God is faithful when I can grab Ansley in my arms in the morning and give her a big hug. She is here with us. She didn't die some 7 months ago. She is here and she is fighting hard. I am reminded daily of how resilient children are. Ansley is very aware that she is sick and that she looks different than most little girls. But this realization doesn't defeat her. She has a child-like trust that I so desire to learn!
I am reminded daily that there is much heartache in the world. Today, I learned of two new children whose lives will be forever changed by a diagnosis of cancer. Everywhere I turn, I see suffering. But, I am reminded that this is not the end of the story and this is not the home that we were created for. Cancer reminds me of how I long for Heaven. How I long for perfection. How I long for no more children to be diagnosed with cancer. One day, that will be reality.
Daily reminders. Some good. Some not so good. But, the question is what will I do with these reminders? Will I have a pity party and live in some "dream" world that cuts myself off from hurting people? Or, will I let the reminders energize my heart to help relieve suffering here and also look to perfection in Heaven? I pray I would choose option two.
As for our family, we are tired but okay. Ansley doesn't look well to me today. I'm not sure if she is just tired or getting sick. No fever, no cough, no pain. But, a mommy knows when her kiddos don't look like themselves. Please pray that she is not getting sick. Pray for our other kids. I have seen some jealousy lately from them in how much attention Ansley is receiving. It is understandable. Everyone asks them about Ansley. I don't want them to start to resent her.
So, in all, I'd say we are doing alright. We have one more week until the next chemo round. This never seems to get easy. I cry as I write that chemo week will be here soon. Please pray for these new cancer fighters and for their families. The initial days are overwhelming and shocking. Pray that God would be near to them and pray that they would know that God will use it for good.
Press on, friends. Don't avoid hurting people. Don't avoid suffering. We have all of eternity to live in perfection! Now is not eternity! Thanks and love to all of the faithful people praying for the full recovery of our little girl.
I also have the visual reminder of her cancer when I see her hair. Yes, it is growing back, but a little girl can only be called a boy so many times before her mom feels like punching someone in the face! I wish some people filtered what they thought before speaking. The daily reminders are hard to swallow. Even on "good" days, there are reminders that things aren't okay.
On the other hand, I have a beautiful reminder daily that God is faithful when I can grab Ansley in my arms in the morning and give her a big hug. She is here with us. She didn't die some 7 months ago. She is here and she is fighting hard. I am reminded daily of how resilient children are. Ansley is very aware that she is sick and that she looks different than most little girls. But this realization doesn't defeat her. She has a child-like trust that I so desire to learn!
I am reminded daily that there is much heartache in the world. Today, I learned of two new children whose lives will be forever changed by a diagnosis of cancer. Everywhere I turn, I see suffering. But, I am reminded that this is not the end of the story and this is not the home that we were created for. Cancer reminds me of how I long for Heaven. How I long for perfection. How I long for no more children to be diagnosed with cancer. One day, that will be reality.
Daily reminders. Some good. Some not so good. But, the question is what will I do with these reminders? Will I have a pity party and live in some "dream" world that cuts myself off from hurting people? Or, will I let the reminders energize my heart to help relieve suffering here and also look to perfection in Heaven? I pray I would choose option two.
As for our family, we are tired but okay. Ansley doesn't look well to me today. I'm not sure if she is just tired or getting sick. No fever, no cough, no pain. But, a mommy knows when her kiddos don't look like themselves. Please pray that she is not getting sick. Pray for our other kids. I have seen some jealousy lately from them in how much attention Ansley is receiving. It is understandable. Everyone asks them about Ansley. I don't want them to start to resent her.
So, in all, I'd say we are doing alright. We have one more week until the next chemo round. This never seems to get easy. I cry as I write that chemo week will be here soon. Please pray for these new cancer fighters and for their families. The initial days are overwhelming and shocking. Pray that God would be near to them and pray that they would know that God will use it for good.
Press on, friends. Don't avoid hurting people. Don't avoid suffering. We have all of eternity to live in perfection! Now is not eternity! Thanks and love to all of the faithful people praying for the full recovery of our little girl.
Tuesday, August 9, 2011
5 more to go!!
Ansley, Matt and Morgan had a long day at the hospital today as Ansley completed another round of chemo. She was a champ even with discomfort with her port. After the completion of today, this leaves 5 more cycles before the scans begin. If we stay on schedule, she will be done with chemo the week after Thanksgiving and scans will begin in December.
Our family has been gearing up for the start of another school year. It is hard to believe we will a middle schooler, 4th, 3rd, 1st graders and Kindergartener this year! Boy, the years are flying...although the days can seem quite long at times. We are thankful to be partnering with a wonderful school that loves our children during a tough season of life. I will be homeschooling Garrett and Ansley until the end of 2011 and then we will see from there.
Matt and I had a wonderful weekend together. It is so good to have fun together, to have time to talk to each other for extended time, and just to remember why I think I am the luckiest bride in the world to have Matt as my hubby! When life hits, I forget how wonderful he is and how honored I am to be his wife. This weekend helped me to remember how precious our marriage is!
Our family has been gearing up for the start of another school year. It is hard to believe we will a middle schooler, 4th, 3rd, 1st graders and Kindergartener this year! Boy, the years are flying...although the days can seem quite long at times. We are thankful to be partnering with a wonderful school that loves our children during a tough season of life. I will be homeschooling Garrett and Ansley until the end of 2011 and then we will see from there.
Matt and I had a wonderful weekend together. It is so good to have fun together, to have time to talk to each other for extended time, and just to remember why I think I am the luckiest bride in the world to have Matt as my hubby! When life hits, I forget how wonderful he is and how honored I am to be his wife. This weekend helped me to remember how precious our marriage is!
Saturday, July 30, 2011
A Wonderful Breather
Our family just returned from visiting my parents in Florida. It was a great break from reality! Ansley will be delayed this week in having chemo because Matt and I are going on a "staycation" to celebrate 14 years of marriage. This will be a very different year but I hope that we can enjoy the time together and focus on each other. Ansley will have chemo on Monday the 8th so that I can be here to give her meds the rest of the week.
We are looking at 6 more treatments before scans begin in December. I have felt fearful lately....more than I have ever known. I am afraid of what the scans will show. I am fearful of the day I hear the doctors say, "We found more". Other than searching out the Word of God, I haven't known what to do with this fear. I have found comfort in the following verse.
"He is not afraid of bad news; his heart is firm, trusting in the Lord." Psalm 112:7
I can't say that I am free from fear but I don't feel alone in dealing with my fear.
Our kids start back to school on August 16th. I am dealing with the thought of this year looking so different than expected. The three oldest will be going off to school while Ansley and Garrett stay with me. I look forward to the time with them but it's hard to swallow all that has happened in the last 7 months of our lives. There is so much to be learned in this process of having a precious child with a deadly disease. Often, it's just plain overwhelming. But, as with other journeys, we are not left alone. We have a hope that is greater and His name is Jesus.
We are looking at 6 more treatments before scans begin in December. I have felt fearful lately....more than I have ever known. I am afraid of what the scans will show. I am fearful of the day I hear the doctors say, "We found more". Other than searching out the Word of God, I haven't known what to do with this fear. I have found comfort in the following verse.
"He is not afraid of bad news; his heart is firm, trusting in the Lord." Psalm 112:7
I can't say that I am free from fear but I don't feel alone in dealing with my fear.
Our kids start back to school on August 16th. I am dealing with the thought of this year looking so different than expected. The three oldest will be going off to school while Ansley and Garrett stay with me. I look forward to the time with them but it's hard to swallow all that has happened in the last 7 months of our lives. There is so much to be learned in this process of having a precious child with a deadly disease. Often, it's just plain overwhelming. But, as with other journeys, we are not left alone. We have a hope that is greater and His name is Jesus.
Monday, July 18, 2011
A Birthday to Remember
It has been a few days since chemo. Actually, it has been 5 days since chemo and 3 days since celebrating a very special 5th birthday for our sweet Ansley. What a roller coaster of a week! The chemo day went well. Her counts were great and her port access went well. The de-accessing didn't go very well. She shed a lot of tears and had a lot of pain with it. Oh, how helpless I feel to hear our baby girl cry while having something like that done to her. The last few days have been hard. We now know to expect these days to be hard. The days following chemo are never easy... Nausea, itching, achy, mouth sores, hunger, fatigue just to name a few of the issues she deals with daily right now.
It was a sweet day on Friday as we celebrated the blessing of 5 sweet years with our baby girl. There has never been a birthday that I have had a wave of emotions like this one. It was a day to remember. I pray we will have many, many more birthdays to celebrate with our daughter.
We will leave for a vacation this Friday to be with family in Florida. It is the first time we will have left Charleston since her diagnosis in December except for the Make-A-Wish trip in April. Please pray she stays healthy. I am fearful of taking her away from a place that knows her so well. But, our family is in need of a break. This season is beginning to take a toll on all of us. It is definitely a marathon. We need a break from the daily struggles that a family undergoes when life changes so drastically from a sick child.
I am so proud of how our kids have handled this stress in life. They are really troopers and have become selfless, patient and sensitive people along this journey. Pray that our time in Florida will be sweet. We could use a break and I am excited to enjoy time together. Pray that our precious Ansley is healed of cancer and that it never again is in her body.
It was a sweet day on Friday as we celebrated the blessing of 5 sweet years with our baby girl. There has never been a birthday that I have had a wave of emotions like this one. It was a day to remember. I pray we will have many, many more birthdays to celebrate with our daughter.
We will leave for a vacation this Friday to be with family in Florida. It is the first time we will have left Charleston since her diagnosis in December except for the Make-A-Wish trip in April. Please pray she stays healthy. I am fearful of taking her away from a place that knows her so well. But, our family is in need of a break. This season is beginning to take a toll on all of us. It is definitely a marathon. We need a break from the daily struggles that a family undergoes when life changes so drastically from a sick child.
I am so proud of how our kids have handled this stress in life. They are really troopers and have become selfless, patient and sensitive people along this journey. Pray that our time in Florida will be sweet. We could use a break and I am excited to enjoy time together. Pray that our precious Ansley is healed of cancer and that it never again is in her body.
Monday, July 11, 2011
A Very Big Week
Ansley has a very big week planned for 2 reasons. The first is chemo on Wednesday. Please pray that she handles it well and doesn't get really sick from it. The second is that she is celebrating her 5th birthday this week. Oh, what a joyous celebration this will be! Her life deserves celebrating in a big, big way this year! And, so, please pray for me and Matt that we can be joy-filled and happy and not emotional during this very special week. She is so excited and has many fun things planned. It is hard as her mommy to know that this birthday will take on new meaning because of her diagnosis in December. I will remember to cherish this celebration and to take it a day at a time. We are given a huge gift this year in being able to sing Happy Birthday to her once again! May we live remembering that today is a gift.
Tuesday, July 5, 2011
Beautiful
Tonight was one of those beautiful nights. We had a fun 4th of July and the kids got to bed quite late. As I was putting Ansley to bed, I decided to lay down with her and hold her hand. Very rarely do I do this but tonight it just felt like the thing to do. And so, I laid down with her and in about 30 seconds she was out! She had a long, fun day and was exhausted. But, then, I just couldn't leave the room. I stayed and watched her sleep. It really was amazing. Here is a little girl fighting the horrible enemy of cancer non-stop for the last 7 months and yet sleeps so soundly. She sleeps so peacefully. It's like she was saying to me as she slept, "Mommy, it's okay. God is greater and bigger and more powerful than cancer. I can trust Him and I will sleep peacefully tonight because of that truth." It has been a while since I have watched her sleep. Yes, as an infant I did it a lot but life just gets too busy and I put important things on hold. It was a good reminder tonight of the beauty of trusting, resting and waiting all from watching a 4 year old sleep. Please don't forget to take time to find those beautiful moments.
Wednesday, June 29, 2011
Chemo and Today
Ansley has handled the chemo from a week ago better than the last couple of rounds. What this means is that there hasn't been as much vomiting, nausea and fatigue. It has been a smoother week than normal chemo weeks and for that we are grateful. I am enjoying my time with the kids tremendously this summer. Why does it take a tragedy to wake me up to the thousands of gifts right in front of my eyes everyday? The most mundane tasks have taken on new meaning. How thankful I am to have so many loads of laundry to do because this means I have 5 kiddos that are able to play and get messy and have energy to be kids! Thank goodness I have a full sink of dishes after breakfast and lunch with my 5 precious babies.
Thankfulness is in my heart today. Pray that I would remember how faithful God has been to our family through this journey. Ansley is more than halfway done with her expected chemo protocol and we look forward to the day when we can ring the bell in the clinic to signify victory over cancer!
Thankfulness is in my heart today. Pray that I would remember how faithful God has been to our family through this journey. Ansley is more than halfway done with her expected chemo protocol and we look forward to the day when we can ring the bell in the clinic to signify victory over cancer!
Thursday, June 23, 2011
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Sunday, June 19, 2011
Does this ever get normal?
It has been a while since I have written. We have had lots of good days lately. I would say they seem somewhat normal....I just don't really like this new normal if I am honest. There are so many days where I say to myself and God, "Can I please have our old life back? Can I please for one hour not think about what is going on inside our little girl's body?" And, of course, the answer is no. Right now, this is our life. And it has to be dealt with. And, so, we will do tomorrow when tomorrow gets here.
Today was a wonderful day. We celebrated the marriage of two very special friends and Ansley was a flower girl. A lot of "what-ifs" went through my mind as I watched our baby girl walk down the aisle.
She looked beautiful. She looked happy. She had so much fun doing it. As her mommy, though, tough questions run through my mind as to what the future will look like.
Please pray for our family this week. Chemo is on Wednesday and so we are coming up on a week of Ansley not feeling well. The chemo seems to be hitting her body harder and making her more nauseated. Please pray for patience and energy for me as I take care of her. Pray that the sickness is not as bad as it was last treatment.
Today was a wonderful day. We celebrated the marriage of two very special friends and Ansley was a flower girl. A lot of "what-ifs" went through my mind as I watched our baby girl walk down the aisle.
She looked beautiful. She looked happy. She had so much fun doing it. As her mommy, though, tough questions run through my mind as to what the future will look like.
Please pray for our family this week. Chemo is on Wednesday and so we are coming up on a week of Ansley not feeling well. The chemo seems to be hitting her body harder and making her more nauseated. Please pray for patience and energy for me as I take care of her. Pray that the sickness is not as bad as it was last treatment.
Wednesday, June 1, 2011
A Day of Mixed Emotions
In many ways, today was a dream for the mamma of a daughter with cancer. Ansley handled her port access like a champ, her counts were really good, platelet counts in the normal range, and she doesn't have to go back to clinic for 2 weeks!! So, what's the other emotion I'm feeling?? Well, as we got great news today, there are many families in clinic that did not get encouraging news. There were lots of new faces today at clinic which means this horrible disease has pressed it's way into another child's body and an entire family's life. We have seen 3 recurrences lately in kids we have gotten to know during the last 6 months. These families have been fighting much longer than we and they are starting again with chemo, radiation and procedures.
You never think this is what life is going to look like. At least it's not what I ever envisioned. And, I am sure it's not what other people have envisioned life would be like for their children. But, I am learning to accept and thank God for this trial. Not that I am thankful for cancer, but I am thankful for how God is carrying us and loving us through this time.
When you look at your kids, or spouse, or friends, make sure your heart remembers to be thankful. Sometimes we have to fight for thankfulness. We have to choose it. I have to choose it 50 million times a day right now. And, I don't get it right very much. But, I know that Ansley's cancer has made me and Matt realize what really matters in life. Every time I can rub my sweet baby girl's soft, blond hair, I am thankful. Every time I see our five precious kids playing together, I am thankful. Every time I can sit and talk and dream with my husband of 14 years, I am thankful.
But, also remember these special families that are fighting cancer once again. Remember the families that drive 2 -3 hours each way to make it to clinic once a week. And, remember the sweet people that have lost their jobs in order to care for their children who are fighting hard against cancer. This is reality for a lot of people. Doesn't it put into perspective the things in life we complain about? It sure convicts me.
So, please join our family in rejoicing and remembering.
You never think this is what life is going to look like. At least it's not what I ever envisioned. And, I am sure it's not what other people have envisioned life would be like for their children. But, I am learning to accept and thank God for this trial. Not that I am thankful for cancer, but I am thankful for how God is carrying us and loving us through this time.
When you look at your kids, or spouse, or friends, make sure your heart remembers to be thankful. Sometimes we have to fight for thankfulness. We have to choose it. I have to choose it 50 million times a day right now. And, I don't get it right very much. But, I know that Ansley's cancer has made me and Matt realize what really matters in life. Every time I can rub my sweet baby girl's soft, blond hair, I am thankful. Every time I see our five precious kids playing together, I am thankful. Every time I can sit and talk and dream with my husband of 14 years, I am thankful.
But, also remember these special families that are fighting cancer once again. Remember the families that drive 2 -3 hours each way to make it to clinic once a week. And, remember the sweet people that have lost their jobs in order to care for their children who are fighting hard against cancer. This is reality for a lot of people. Doesn't it put into perspective the things in life we complain about? It sure convicts me.
So, please join our family in rejoicing and remembering.
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