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.Day 8.

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!

Comments

The Murphys said…
We gave JJ his closest buzz yet in honor of Jack. Just wanted you to know. We love you guys and are praying for you.
Jean said…
Thank you for sharing everything so well; the details and your struggles. It allows others to pray for you in a very specific way. Please don't hesitate to keep doing that.

Praying for you!
Lindsey Knott said…
Thank you for the updates Tali...I have been carrying you on my heart...I can't even imagine how difficult this is. I do know however what an amazing mommy and woman of God you are and I have no doubt you are going to honor the Lord even more than you already have. Jack will be absolutely adorable with or without hair, I mean he is YOUR kid!! ;)
Anonymous said…
The grace being poured out on you and your family is amazing. Thank you for your courage in sharing all you are experiencing - it motivates us all to pray regularly.
Lotinsky family
How beautiful is the body of Christ! Thank you for sharing how we can be praying specifically these next few days. May the grace and peace of our Lord overwhelm you!
Gisele and family
Colbert Family said…
Continuing to keep your family in our prayers. Reading all of your thoughts and what you're going through brings back vivid memories to us. I remember being woken up at 3am because my daughter was screaming that she wanted chicken when she was on steroids. I also remember when her hair started to fall out and feeling the exact same way... I cried for quite awhile. Anyway, I pray that God will continue to pure out his mercy and grace on Jack and you and your family. I will also pray that your marriage will be strengthened through this trial.
Blessings,
Jim Colbert
Amy said…
Aww, you guys are on my heart so much. Thanks for sharing the details of your journey. Jack is beautiful, and will look adorable, hair or no hair. :)

Love,
Amy
Shanna Gonzalez said…
God's grace is evident in your lives. Praying for you.

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