We are here at Children's Hospital again for Jackson's first day of outpatient chemo treatment. Poor little guy has not been allowed to eat since last night, and normally, this would not be the hardest thing for him, as he is generally easy to distract. But, on the steroids he is taking daily, he has an increased appetite. So much so, that he wants to eat all day long. Last night, at 3 am, he woke up starving, asking to eat. Yesterday morning, our first full day home, he asked for Mac n' Cheese for breakfast, and ate almost a whole box. So yeah, the fact that it is 10 am and he has note eaten in 12 hours is really really hard on him.
Shortly he will be going under general sedative for a bone marrow biopsy and a lumbar chemo treatment. After that, he will be able to eat. He will also be getting some chemo in his Broviac (central IV). We will know tomorrow some of the results of the bone marrow biopsy. Hopefully the results of this will be that there are less than 5% leukemic cells seen. This will mean that he is in remission. If they find more than that, they might have to add to his chemo regimen.
Being home has been wonderful. We have slept so much better, and he has been so happy to be there. We were welcomed home by a sign on the front door, many balloons and an immaculate home. Our dear friends spent much of Tuesday and Wednesday morning cleaning our home, preparing it for Jacks return. This was such an act of heroic service. For many reasons, this was one of the kindest things they could do for us!
The day before all of this happened- last Monday- we had just been snowed in with another family with two kids the same ages as ours. We had so much fun as families and the kids played together so well, we let them just be together in the various rooms of the house. They had spent most of the weekend, playing and making messes everywhere! So last Tuesday morning, I had planned to spend the day getting our home back in order-- but God had another plan. So when these dear friends came into our home to clean a few days ago, it truly was a disaster! I had not cleaned in days, had rushed out the door Tuesday to the Shady Grove Hospital, and had not been back in a week.... so yeah, I am keenly aware of just what a labor of love these servants lavished on us. Thank you friends. There are no words sufficient to express my deep gratefulness for all you did.
Letting Jack sleep through the night the past two nights, without the midnight and 4 am vital checks has been so refreshing for all of us. He slept 11 hours the first night home. We have not brought Tyler home yet, as we wanted Jack to adjust to the change first. We are bringing him home tonight and are so excited to be together again. Jordan spent the day with him yesterday and he is just so excited to be home. He has been staying with our dear friends, the Dufrins, and loving every minute of him time with them. God has been so faithful to protect him while there, as most of the family came down with the flu. All but Tyler and their oldest daughter (whom Tyler loves so so much) got sick!
Something that has been heavy on my heart is the fact that Jack's hair has begun to fall out already. I think I was not expecting this side effect to happen so soon. We noticed little pieces of blond hair on Jordan today while waiting at the hospital, and the tears immediately start to come when I think on this. Jordan thinks he is going to look cute bald... I just don't know. So for this weekend, the boys are gonna get hair cuts together. Not buzzed, just much shorter. I know this will be very emotional for me, but I also know that it is part of the process of getting my little boy healthy again.
Thanks again for the continued thoughts and prayers. We are hoping to hear happy news about the bone marrow biopsy today or tomorrow!
Shortly he will be going under general sedative for a bone marrow biopsy and a lumbar chemo treatment. After that, he will be able to eat. He will also be getting some chemo in his Broviac (central IV). We will know tomorrow some of the results of the bone marrow biopsy. Hopefully the results of this will be that there are less than 5% leukemic cells seen. This will mean that he is in remission. If they find more than that, they might have to add to his chemo regimen.
Being home has been wonderful. We have slept so much better, and he has been so happy to be there. We were welcomed home by a sign on the front door, many balloons and an immaculate home. Our dear friends spent much of Tuesday and Wednesday morning cleaning our home, preparing it for Jacks return. This was such an act of heroic service. For many reasons, this was one of the kindest things they could do for us!
The day before all of this happened- last Monday- we had just been snowed in with another family with two kids the same ages as ours. We had so much fun as families and the kids played together so well, we let them just be together in the various rooms of the house. They had spent most of the weekend, playing and making messes everywhere! So last Tuesday morning, I had planned to spend the day getting our home back in order-- but God had another plan. So when these dear friends came into our home to clean a few days ago, it truly was a disaster! I had not cleaned in days, had rushed out the door Tuesday to the Shady Grove Hospital, and had not been back in a week.... so yeah, I am keenly aware of just what a labor of love these servants lavished on us. Thank you friends. There are no words sufficient to express my deep gratefulness for all you did.
Letting Jack sleep through the night the past two nights, without the midnight and 4 am vital checks has been so refreshing for all of us. He slept 11 hours the first night home. We have not brought Tyler home yet, as we wanted Jack to adjust to the change first. We are bringing him home tonight and are so excited to be together again. Jordan spent the day with him yesterday and he is just so excited to be home. He has been staying with our dear friends, the Dufrins, and loving every minute of him time with them. God has been so faithful to protect him while there, as most of the family came down with the flu. All but Tyler and their oldest daughter (whom Tyler loves so so much) got sick!
Something that has been heavy on my heart is the fact that Jack's hair has begun to fall out already. I think I was not expecting this side effect to happen so soon. We noticed little pieces of blond hair on Jordan today while waiting at the hospital, and the tears immediately start to come when I think on this. Jordan thinks he is going to look cute bald... I just don't know. So for this weekend, the boys are gonna get hair cuts together. Not buzzed, just much shorter. I know this will be very emotional for me, but I also know that it is part of the process of getting my little boy healthy again.
Thanks again for the continued thoughts and prayers. We are hoping to hear happy news about the bone marrow biopsy today or tomorrow!
Comments
Praying for you!
Lotinsky family
Gisele and family
Blessings,
Jim Colbert
Love,
Amy