We’re going to be printing out this blog and making a book for Tessa (and for us, I guess). Tessa doesn’t really understand all that has happened to her, but we would like her to know and understand a little better as she gets older. We wanted to invite you to be a part of this remembrance. If you are willing, would you please add your comments or thoughts to this final post? Anything you add will be printed and added to the end of the book we’ll put together. As Tessa grows older, she’ll be able to look back on this time and understand it better. She’ll get a better sense of the rare and beautiful community that surrounded her, prayed for her, and walked through this with her. We’ll leave the blog up and open for comments through the end of May, and then in June we’ll print everything out and make the book.
Thank you for your interest in Tessa, in our family, and for your constant intercession before the Lord on our behalf. We are so appreciative of all the cards, emails and phone calls. Thanks to those of you who sent gifts, stuffed animals, activities for the hospital, and stickers. Thanks to all who remembered Justin through this, sending him little gifts to help him remember that he is loved, too. We look forward to your comments, as we turn the page from this intense season and start the next chapter of God’s journey for our family. We love all of you.
In Jesus’ name,
and for His glory alone,
Tim and Joanna
Justin, and Tessa.
Friday, May 4, 2007
Thursday, May 3, 2007
The End of this Chapter
A number of you have been asking how Tess has been since we’ve come home from the hospital. We had forgotten how much less time is available when we’re actually at home caring for our own children. But, reading the last post over again, we kind of left things hanging. So this post closes things up for this blog.
Tess is doing great! She guards her left side when she runs, but she’s running around without any medication. She laughs and plays and dances and sings (and sings and sings). She hurt herself a bit when she fell one day, but she fell because she was jumping on a mattress! I’ve decided to give her the nickname Logan.
Tessa recovering on the couch; A sister's love, happy to be reunited with her brother.
As far as the labs and tests on her tumor are concerned, they have all come back favorable: the MiCN, the histology sample, the genetic markers all came back indicating that she should have no further problems. We go back in on Tuesday for the surgery follow-up appointment to discuss things with Dr. Shamberger.
Looking to the future, Tess will need repeated MRIs over the next few months just to confirm that the tumor is not regrowing. So, she’ll have to get a “poke” (her word for IV) and be sedated for these tests each time. We’ll have to go in at one month, three months, six months, and then again at a year. After two years, we’ll just be going in to touch base with the oncologists at Dana Farber on an annual basis - Tessa is a Jimmy Fund kid for life.
So we asked the oncologist, Dr. Diller, point blank: was this cancer? In all the chaos, we had never been given a straight answer on this question. She said that the tumor was a ganglioneuroblastoma (mostly benign) with pockets of neuroblastoma (more malignant) tissue throughout the tumor. So if cancer is defined as a tumor caused by abnormal and uncontrolled cell growth and division, then yes. But if it is defined as a tumor with the potential to metastasize throughout the body, then one might not call it “cancer” per se. She did say that if we are asked in the future if Tess has any history of cancer, we’re to answer “yes” and to call it a ganglioneuroblastoma. So we still have no idea. But we do know that Tessa’s clump is gone, baby. It’s gone.
Joanna’s dad was with us for the last week, and my mother has been here for six weeks now! It seems like she just got here yesterday. But my dad showed up from Florida last night to take her home, and all three left this morning. So we’re on our own. The house seems quieter - a little empty, actually. But with an empty house comes the possibility of a life returning to normal. Whatever normal is. If normal is ever possible after something like this. Is normal even a goal worth pursuing? We face each day now with a renewed appreciation for and awareness of how much we need God’s providential and sustaining grace, moment by moment. I don’t want to go back to our state of taking-God-for-granted, taking life for granted. In an email conversation with a friend, these words were written to us - capturing the heart of where our journey goes from here:
“Day by day. Life for you and for Tessa will never be the same. That's okay. That's not meant to be discouraging. But it is meant to be realistic. You will need God's grace and Tessa will need God's grace to live day by day after this surgery... and you will remember that what has happened once might happen again. This will not be fear or anxiety. But it may be a sense of vulnerability and it will likely make you utterly dependent on God. Day by day. And this is what life should be like - but often, usually, isn't. Whenever you see the scar, you will be thankful to God for His mercy and provision and for His sustaining grace. Day by day. And sometimes you'll want to get a prominently visible tattoo to externally remind people of what you've been through and what you see in the mirror each day... Our true, real, position before God becomes much clearer. And that's okay. Whether we realize it or not we are daily dependent on His sustenance for our being anyway.”
Tessa on a swing at Stage Fort Park; Posing for the camera.
Tess is doing great! She guards her left side when she runs, but she’s running around without any medication. She laughs and plays and dances and sings (and sings and sings). She hurt herself a bit when she fell one day, but she fell because she was jumping on a mattress! I’ve decided to give her the nickname Logan.
Tessa recovering on the couch; A sister's love, happy to be reunited with her brother.
As far as the labs and tests on her tumor are concerned, they have all come back favorable: the MiCN, the histology sample, the genetic markers all came back indicating that she should have no further problems. We go back in on Tuesday for the surgery follow-up appointment to discuss things with Dr. Shamberger.
Looking to the future, Tess will need repeated MRIs over the next few months just to confirm that the tumor is not regrowing. So, she’ll have to get a “poke” (her word for IV) and be sedated for these tests each time. We’ll have to go in at one month, three months, six months, and then again at a year. After two years, we’ll just be going in to touch base with the oncologists at Dana Farber on an annual basis - Tessa is a Jimmy Fund kid for life.
So we asked the oncologist, Dr. Diller, point blank: was this cancer? In all the chaos, we had never been given a straight answer on this question. She said that the tumor was a ganglioneuroblastoma (mostly benign) with pockets of neuroblastoma (more malignant) tissue throughout the tumor. So if cancer is defined as a tumor caused by abnormal and uncontrolled cell growth and division, then yes. But if it is defined as a tumor with the potential to metastasize throughout the body, then one might not call it “cancer” per se. She did say that if we are asked in the future if Tess has any history of cancer, we’re to answer “yes” and to call it a ganglioneuroblastoma. So we still have no idea. But we do know that Tessa’s clump is gone, baby. It’s gone.
Joanna’s dad was with us for the last week, and my mother has been here for six weeks now! It seems like she just got here yesterday. But my dad showed up from Florida last night to take her home, and all three left this morning. So we’re on our own. The house seems quieter - a little empty, actually. But with an empty house comes the possibility of a life returning to normal. Whatever normal is. If normal is ever possible after something like this. Is normal even a goal worth pursuing? We face each day now with a renewed appreciation for and awareness of how much we need God’s providential and sustaining grace, moment by moment. I don’t want to go back to our state of taking-God-for-granted, taking life for granted. In an email conversation with a friend, these words were written to us - capturing the heart of where our journey goes from here:
“Day by day. Life for you and for Tessa will never be the same. That's okay. That's not meant to be discouraging. But it is meant to be realistic. You will need God's grace and Tessa will need God's grace to live day by day after this surgery... and you will remember that what has happened once might happen again. This will not be fear or anxiety. But it may be a sense of vulnerability and it will likely make you utterly dependent on God. Day by day. And this is what life should be like - but often, usually, isn't. Whenever you see the scar, you will be thankful to God for His mercy and provision and for His sustaining grace. Day by day. And sometimes you'll want to get a prominently visible tattoo to externally remind people of what you've been through and what you see in the mirror each day... Our true, real, position before God becomes much clearer. And that's okay. Whether we realize it or not we are daily dependent on His sustenance for our being anyway.”
Tessa on a swing at Stage Fort Park; Posing for the camera.
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