Time

Since Grace has been diagnosed, I have wanted time to go quickly. And luckily, it did go pretty quick. That was the one time in life that I was grateful time went quickly. But because time went so quickly, my little baby is now almost 8 months old. In a way, I feel like she was just born.
Babies change so much the first year. It's hard to believe 7 1/2 months ago, she couldn't even lift up her head, and now she is crawling everywhere and pulling herself up on furniture. The sad thing is that I can barely remember what she was like when she was so tiny. So, I definitely don't remember what Grace was like as a baby. I don't even remember what she was like a year ago.
I'm feeling the need to document many more moments in life, because I will not remember every detail. At the time, you swear you'll remember all of the special moments, but unfortunately, they are quickly forgotten.
With Anna, I've been doing a monthly journal in her baby book, so that helps to keep track of the new things she is doing. With Grace, I don't have anything like that. I know Grace no longer changes as frequently as a baby does, but she is changing so much, right before our eyes. If I look at pictures or videos from a year ago, she still looks like such a baby and sounds like a baby. At the time, I didn't think she sounded or looked like a baby. Will I look back at her during this time and think the same?
She has made us so proud in so many ways. During this difficult time in her life, she has begun her own special relationship with Christ. She is learning what it means to pray for others and for herself. She is also learning what it means to have a relationship with Him and how to memorize scripture.
We were especially proud of her after kid's church last week when she was able to tell us exactly what she learned including the key points of the story. She also remembered the Bible verse she was taught; "God is with you wherever you go." Such a simple verse, yet so powerful.
The Bible story she learned was about Baby Moses and how God kept him from crying and put him into the basket and the princess found him.
Now that we're in Maintenance, and our lives can return to somewhat normal, I am okay with time slowing down. I know these girls will be grown way too fast.

God is Good

Philippians 4:6
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.

I'm not good at memorizing verses, but this is a verse I made a point to memorize this week. Philippians 4 was part of our church's daily reading this week and that book was meant for me this week. I have been worrying so much these last few weeks about Grace and the possibility of her getting a fever and being hospitalized. In my mind, I had planned on an admission and was just waiting for that fever. I didn't think we would be out of the weeds until mid-week next week.
This morning we had an appointment. I expected her White Blood Cells (WBCs) and ANC to be 0. I also assumed she would need a blood and platelet transfusion, because she's looking pretty pale and has lots of bruises on her body.
God far exceeded my expectations this morning. She did not need a transfusion of Red Blood Cells or Platelets and her ANC was 294! Not only was her ANC 294, she has a lot of baby WBCs that are going to keep making more, which will raise her ANC even more. The doctor and nurse said she's on her way back up! I was totally amazed. I told God what I needed and I will thank Him for all He has done. He is such a good God and has blessed us so much.
Looking back at the last 7 months, things have gone so much better than we could've hoped for. She is just 2 weeks away from Maintenance and has only been hospitalized once for a fever. She also has remained strong and has not needed braces on her legs. He has heard our constant prayer to protect her and keep her strong.
I'm feeling especially overjoyed with all of this news, because she may never drop her counts again, she may never need a transfusion again and her ankles are going to most likely get stronger and stronger! God has held us so close through all of us and has revealed Himself to us in new ways. I pray that He will show us how we can share Grace's story with others and encourage others going through similar circumstances.

My Sweet Girl

I am so grateful for my sweet little girl. I am so grateful that through the last 7 months, she has remained my sweet little girl. Of course, there have been times where she hasn't been quite as happy or feeling as well, but overall she has been as happy as ever. I think she is at a perfect age to go through this. She only sees life day by day. She has no worries of tomorrow or the future. If she's feeling nauseous or has a runny nose, she's sick that day, but every other day according to her, she's not sick. She knows that her blood is sick and that's why she has to go to the doctor every week and get lots of medicine. You can truly see God's "Grace" in her. She is not upset or sad about the things she has to do. She just does them, because we tell her she needs to.
Even with losing her hair, she has never complained. When she looks in the mirror, she doesn't see anything different. She knows that it will grow back someday soon. A few weeks ago, she took off her hat in front of someone she had just met and said "My hair's pretty short right now" , just very matter of fact.
She is full of joy and I pray that she never loses the joy she has. I pray that God will use her story to touch others and that she will have an incredible testimony to tell in her future!

Roid Rage

Grace has one more day of steroids for this phase, thank goodness. Steroids make sweet, playful little girls into emotional, mean, hungry little girls. This week hasn't been as bad as it was when she was first on steroids back in December, but it is definitely similar. Her whole day is focused on food. From the moment she wakes up, she already has her whole day planned out as far as what she is going to eat. Heaven forbid that we would change it up at all either. She could literally eat all day if we let her. Today, when we got home from a walk at 10:30 am, she was so upset because she wanted lunch and wanted me to say that it was almost lunch time. She refused to have a snack, but was very disappointed that it wasn't lunch time yet. She just laid on the couch and kept asking what time it was. At 11:30, I finally said, "Ok, you can have some lunch now." She got so excited and said, "See! It was almost lunch time! I told you so!" I just had to laugh, what a goof.

Weary

It's amazing what a difference a week can make. A week ago, I was feeling so sad and down about our situation with Grace. It had been going on for a few weeks where I was feeling very weary and defeated. It gradually was getting worse and I eventually reached out to some close friends and asked for prayer. I was trying to dig deeper into God's Word and pray more as well, but felt like I wasn't getting anywhere. I think a lot of it had to do with starting this current phase of treatment. Since the beginning, we knew about this phase and how hard it was going to be. It's hard to be optimistic about it, when you've heard so many bad things about it.
I'm so happy that this week, I am feeling so much better. I can't pinpoint it to one particular reason, probably lots of prayer. I am feeling more like myself and ready to finish up this last phase of intense chemo strong. Now that we're a few more weeks into it, it doesn't seem quite as hard. It will most likely get a lot harder as her numbers begin to trend downward.
The steroids artificially inflate her ANC, so we really don't know where she's at right now. We have to be on the lookout these next few months for any fevers, lethargy or any change in her normal behavior, because it could warrant a trip to the hospital.

Blessings

I was just reading John 9 and at the beginning it talks about a blind man who was healed by Jesus. The others asked, "Why is he blind? Did his parents do something?" And Jesus answered that "this happened so that the works of God may be displayed in him."
There have been days where I've asked the famous question "Why?" Why does Grace have to go through this? Why do we have to go through this? Why does anyone have to go through this? Why is there sickness and hurt in this world? We've believed from the beginning that there is a purpose in all of this and God is going to use it, and I believe He already has, for His good. Even though there have been some hard days/weeks, He has been with us the whole time, holding our hands, comforting us and giving us strength.
My dad has struggled with Multiple Sclerosis for almost 20 years. He has been a great example to me throughout this. I rarely hear my dad complain about his disease. He knows that this is what God has for him and even though he has really hard days, he is constantly leaning on God as his ultimate strength and comfort. We had a great talk when I was home last about this topic. "Blessings" by Laura Story has been a great reminder for us both. Maybe these awful illnesses are our blessings in disguise. God only longs to bless us, not harm us.

Reflection

Sunday will mark 4 months since we embarked on this journey. I can't believe it's only been 4 months, it feels like it was a year ago. It's hard for me to remember what our lives were like before this diagnosis. I remember many details about the day of diagnosis, many that I will never forget. I don't think about that day too much, because if I do, I could make myself cry. It's amazing how in one moment, you're life can literally change forever. It was such a scary day too because we didn't know what was ahead. Leukemia sounds so scary and we didn't know anything about treatment or the prognosis. Throughout the whole process, they've only given us treatment information about the current phase and not too much about what's ahead. It's probably a good thing, because we would have been very overwhelmed at first. Now, we look at each phase as a checklist that needs to be completed to get us back to a sense of normalcy.
This journey has had so many ups and downs. It's crazy how one week I can feel so sorry for myself and our family and the next I am completely fine. It's completely affected by how Grace's numbers are and how she is feeling. Last month, there were a few days that I was really struggling, asking myself "why me?" I was particularly anxious those few days because Grace's numbers were at an all time low and I could tell she wasn't feeling the best. I actually felt much better when she spiked a temp that night to 102 and we were admitted to the hospital. I probably felt better because I knew she was in the right place and I didn't have to worry about her all night.
I have a hard time sometimes finding the balance between worrying and trusting God completely. I recently heard a phrase "the areas you have the most fear are the areas you trust God the least." I have to continually remind myself of this. How can I not trust God with my girls? He is the one who created them and He is the one who knows what everyday of their lives will hold. As much as I want to control the area of their health and well-being, I simply can't. So I have to trust that God will heal Grace completely and keep Anna free from any sickness. And if we are faced with something in the future, I know that God will bring us through it. If God brings us to it, He will bring us through it. He will never give us more than we can handle.

Faith

I have been a Christian pretty much all of my life, so at times it becomes too comfortable. There's been many times in my life where I haven't actively sought God and took advantage of the fact that He would always be there when I decided to go back to Him. Unfortunately, there have also been times in my life where I have been too scared or shy to share my faith or bring up spiritual things.
Grace has been a great example to me recently. She just turned 3 and tells others freely about God. On Friday we were at the doctor and he was listening to her heart and she said "God lives in my heart." He took his stethoscope out to make sure he heard her properly. He thought that was very profound for a 3 year old. There are other times she has told people that she is better because "God healed me!" She is teaching me things and she is only 3. She truly has a child-like faith and it is beautiful. I pray that she never loses that excitement about sharing who God is and what He has done in her life.

Glimpse into my heart

I've recently realized that there is a major event going on in my life, one that I hope to never face again, and I want to better document what is going on during this time. So much has happened since Grace was diagnosed with leukemia at the end of November. We welcomed a new baby girl into the world and have been enjoying watching her grow. We have adjusted to Grace's diagnosis and all that goes with it; the weekly appointments, the nausea, the weak ankles, all of these things that we knew nothing about before November.

God has used this time to draw me closer to Him. It's unfortunate that it takes my daughter being diagnosed with cancer to do it, but it's all God's plan. I needed some shaking up in my spiritual life. I've been a Christian since I was a child and many times I get too comfortable in my spiritual life. It's amazing when something like this happens, you realize how much you need God and how He is right there waiting for you. After something like this happens in your life, every scripture, every worship song, has so much more meaning. I'll never forget what it felt like to go to church for the first time after Grace was diagnosed. It was a month after she was diagnosed, and it was Christmas Eve service. I could have sat and cried through the whole service. It was the first time in a long time that I felt so close to God. The Spirit was so strong that night and so sweet. I looked at my girls with me and felt so incredibly blessed that God had healed Grace and that we had a new beautiful addition to our family.

That service was also at the end of the hardest week since Grace was diagnosed. I'm sure the post-natal hormones had something to do with it, but I was very emotional that week. Grace being on steroids was so sad. She was not our little girl for a few weeks. Not only did she look physically different, she gained 10 pounds in a matter of a few weeks, but her personality was completely different. Days would go by without her smiling. We would do almost anything those weeks to make her happy. During that week, I couldn't even look at pictures of her without crying. I missed her so much. I can't imagine what she felt like. She was having a hard time walking because of the weight gain and I'm sure on the inside she felt crazy as well. It's nothing that a 2 year old should ever have to go through.