Our Journey of Nathan's Transplant
We're Still Rejoicing!
Saturday, February 11, 2012
Friday, February 10, 2012
Teaching and Learning
I have been trying to get time to post for almost two weeks. I am so sorry, it is hard to find the time to sit down and collect my thoughts. There is much to tell. I will try to post over the next several days to share.
First, I wanted to share of a sweet moments I have shared with my amazing son Isaac. God has given me the opportunity and challenge to share with him about Jesus. I have been able to explain that you can ask Jesus in your heart, about how much our heavenly father loves us. Explaining salvation on a 3 year olds level is very challenging. I am trying to explain forgiveness, and what Jesus did for us. I am thankful for each of these opportunities. It is a powerful reminder for me.
Isaac is smarter than we think many times. Last week I told him how Jesus is in our heart, but a few nights ago when we were talking about Jesus and how he was in heaven. Isaac said he wanted to outside to see him in the sky. Shawn and I were trying to explain you can't see him. Then Isaac asked, " I thought Jesus was in my heart". We had a good laugh. Our little guy does not miss a beat.
On a more serious note, this has given me the wonderful opportunity to reflect on what Jesus did for us. I can absorb myself and focus on the depth of love that our father has for us. It has also motivated us to read the Bible as a family. I have also been journaling on the scriptures I have been reading in the Word. It has been a blessing spending more time reflecting on the Word of God.
Direct my footsteps according to your word; let no sin rule over me.
Psalm 119:133
Your word is a lamp for my feet, a light on my path.
Psalm 119:105
I will be more committed to praying consistently for my children, the choices they will make, my husband, and the many changes that will happen when we go back home.
We have started making tentative plans to go back home at the end of May or the beginning of June. Please pray we will find the right person to take care of our boys as we can not put Nathan in to daycare.
Wednesday, January 11, 2012
Grace and Thankfulness
I am sorry it has been so long since I have posted. Not only has it been busy, but emotionally it has been hard. I have had some dark moments. Praise God that he is faithful when we are faithless. God reminded me today
I can do all things through Christ who strengthens me.
Philippians 4:13
I have felt overwhelmed and alone. I was angry. God has been working on me. He showed me that grace is not earned. We did not earn it, nor will others earn it from us. God has been showing me to look for the good in others, not to focus on the bad. He gives us difficult situations as an opportunity to show his love to others. He also reminded me to be thankful.
I am thankful for my two beautiful boys. I am thankful for Nathan's health, and how God has answered so many prayers. I am thankful for how God has provided. I am thankful for my friends, I miss them so much. Shawn and I are so thankful for our amazing jobs. We still have jobs, and they have allowed us to work remotely. God is good.
Nathans did heal from the infection, we were home in time for Isaac's 3rd birthday and Christmas. Thank you God!
We found out that Nathan's kidneys are only functioning at 50%. He has stage 3 chronic liver disease. This is in part from the chemotherapy and the drugs he is on. They are hopeful this will improve, though they can not guarantee a full recovery. He is still only eating 1-3 ounces a day. We are trying medicine to increase his appetite. He throws up almost every morning. The doctors say this is normal, but it is frustrating for us. He has started rolling over!!! And . . Nathan turned 7 months old!
I am starting to ease back into work. This is a challenge and a blessing. God continues to work in our lives and answer many prayers. As we start planning to return home at the end of May, please pray for all the details to be worked out. We will need to make childcare arrangements and prepare our house. There is a lot of work to be done. Please also pray for us to have wisdom on how to balance Isaac and Nathan's needs. Pray that Shawn and I would continue to grow and depend on the Lord.
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Monday, December 12, 2011
We're back
Nathan started running a fever late Saturday night. By 6am on Sunday he had thrown up at his fever was over 101. We called the doctor on call and were told to bring him to Cardinal Glennon ER, but that we would probably be admitted. That morning his fever got to 103.6. He was miserable. We were admitted, and within 10 hours his blood cultures were positive for infection.
All we know so far is that there is an infection in his blood. We are waiting on the type and how long we will be here. I am praying for God to heal Nathan's body quickly, and for him to be more comfortable. I am hoping to be out in time for Isaac's birthday in 9 days. His fever is down, but he has been pretty fussy.
All we know so far is that there is an infection in his blood. We are waiting on the type and how long we will be here. I am praying for God to heal Nathan's body quickly, and for him to be more comfortable. I am hoping to be out in time for Isaac's birthday in 9 days. His fever is down, but he has been pretty fussy.
Homecoming: Finally Together
Nathan was released from the hospital Tuesday, November 22nd. I got to put the boys in matching blue and green plaid shirts. It was a sweet day. Isaac was so excited, and it was surreal that Nathan was actually home. Its great to have both of my boys together. It is also a lot of work.
We hook all of Nathans IVs up. His IV nutrition runs from 7pm to 9am, then he has another medication that runs twice a day from 9-11 am and pm. We have to inject the vitamins into the IV nutritrion. Then he has oral medication at 8a, 2p, and 9p. The poor little guy has 6 of them in the morning, and 2 mouth swabs. He does not like it very much, and it has proven to be a challenge. There is constant activity in the house.
Isaac loves spending time with his little brother and making him smile. He even loves wearing shirts that match.
We are starting to get a routine, but it is busy. I have to take Nathan in for out patient treatment every Monday and Thursday. So far we are usually there until 2pm.
God has answered a lot of prayers to bring us this far. He is good!
We hook all of Nathans IVs up. His IV nutrition runs from 7pm to 9am, then he has another medication that runs twice a day from 9-11 am and pm. We have to inject the vitamins into the IV nutritrion. Then he has oral medication at 8a, 2p, and 9p. The poor little guy has 6 of them in the morning, and 2 mouth swabs. He does not like it very much, and it has proven to be a challenge. There is constant activity in the house.
Isaac loves spending time with his little brother and making him smile. He even loves wearing shirts that match.
We are starting to get a routine, but it is busy. I have to take Nathan in for out patient treatment every Monday and Thursday. So far we are usually there until 2pm.
God has answered a lot of prayers to bring us this far. He is good!
Saturday, November 19, 2011
Still Waiting
I have not had access to the computer much of the last week because I got sick too. Isaac was still sick, but I did not come home in the case that I would recover quickly. I did not want to catch what Isaac had. I spent four days over at my grandmas house, which was neat. That is something I hadn't done in years.
I have not been to the hospital in 6 days. We were scrambling trying to find people that were healthy and available to go up and sit with Nathan. Thank you Jane and Grandma Linnie! It was a blessing to us, and Nathan. Yesterday for the first time in over a week Shawn was able to go up and be with Nathan. There was a possibility that Nathan was going to have a double surgery this coming week. He will not have a surgery at this time, it has been postponed to a later date.
The past few weeks have been filled with many disappointments and trials. It has been hard. Honestly at the moment I'm angry with God. I know that he supplies the strength we need for each moment, but it doesn't mean that I like that this has been so hard. He says come to me those who are weary and I will give you rest. I know his word is true, but I am still waiting for rest. The past couple of days I feel like I am alone, as far as human beings on this plant. There is no one to help ease my burden, and so many are giving me more burdens to bear. My heart has been heavy, and I have been weary. I am pressing into God as angry as I am with him. He will be faithful and fulfill his promises . . .
I am thankful that we have a God who will never let us down, because so many times the people we are closest to will. Don't put your faith, or hope, in people. Put your faith in our Lord Jesus, who loves us unconditionally. Right now even some of my closest relationships hurt. God wants me to completely depend on him. Just like so many other times, he takes everything away from me. Its a painful process that I hope I will take with me when this trial is over.
Rejoice . . . God is still answering prayers. My boss is willing to work with me so that i will be able to work remotely for the next 6 months. It is a huge answer to prayer. Hopefully Nathan will be coming home this coming week. Now all we are waiting for is for all of us to be healthy. Thank you everyone for your continued prayers.
I have not been to the hospital in 6 days. We were scrambling trying to find people that were healthy and available to go up and sit with Nathan. Thank you Jane and Grandma Linnie! It was a blessing to us, and Nathan. Yesterday for the first time in over a week Shawn was able to go up and be with Nathan. There was a possibility that Nathan was going to have a double surgery this coming week. He will not have a surgery at this time, it has been postponed to a later date.
The past few weeks have been filled with many disappointments and trials. It has been hard. Honestly at the moment I'm angry with God. I know that he supplies the strength we need for each moment, but it doesn't mean that I like that this has been so hard. He says come to me those who are weary and I will give you rest. I know his word is true, but I am still waiting for rest. The past couple of days I feel like I am alone, as far as human beings on this plant. There is no one to help ease my burden, and so many are giving me more burdens to bear. My heart has been heavy, and I have been weary. I am pressing into God as angry as I am with him. He will be faithful and fulfill his promises . . .
I am thankful that we have a God who will never let us down, because so many times the people we are closest to will. Don't put your faith, or hope, in people. Put your faith in our Lord Jesus, who loves us unconditionally. Right now even some of my closest relationships hurt. God wants me to completely depend on him. Just like so many other times, he takes everything away from me. Its a painful process that I hope I will take with me when this trial is over.
Rejoice . . . God is still answering prayers. My boss is willing to work with me so that i will be able to work remotely for the next 6 months. It is a huge answer to prayer. Hopefully Nathan will be coming home this coming week. Now all we are waiting for is for all of us to be healthy. Thank you everyone for your continued prayers.
Saturday, November 12, 2011
Sad
The past couple days had been filled with disappointments. Today my heart is broken. Cristina was a beautiful 6 year old girl that has been back in the bone marrow unit with us. She passed away this morning. Two months ago, she had her first stem cell transplant. She did great, but the cancer was not gone. She came back 2 weeks ago for a 2nd transplant while we were still in the bone marrow unit. She passed away into the arms of Jesus. I couldn't bear to hear her cries of pain. It seems so unfair for children to suffer like that. It is hard to understand.
She would always waive at me through the door. I even had the privilege to do crafts with her. Her smile would light up the room. Even when she wasn't feeling well she would still waive. Her parents faith in our Lord was a testimony to all. Her dad always has an amazing optimism and a strong faith in God. Her mom has an amazing strength. Please pray for Cristina's parents and brother and sister.
On another note we didnt get to come home Thursday because Isaac is sick. It is the third day that he still has a fever. I can't be with him, because I cant get exposed. I want to make it all better. The longer he is sick, the longer we can't come home. I am worried for him too. My heart is aching. There are some other issues with Nathan, but it is looking very good that we will get released on Monday either.
She would always waive at me through the door. I even had the privilege to do crafts with her. Her smile would light up the room. Even when she wasn't feeling well she would still waive. Her parents faith in our Lord was a testimony to all. Her dad always has an amazing optimism and a strong faith in God. Her mom has an amazing strength. Please pray for Cristina's parents and brother and sister.
On another note we didnt get to come home Thursday because Isaac is sick. It is the third day that he still has a fever. I can't be with him, because I cant get exposed. I want to make it all better. The longer he is sick, the longer we can't come home. I am worried for him too. My heart is aching. There are some other issues with Nathan, but it is looking very good that we will get released on Monday either.
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