Jack has grown as has his tumour. Thankfully, it's at about the same pace.
We got to see him in 3D today and while that was lovely I don't know that I was emotionally ready to see his tumour that way.
Some days this seems manageable and some days it doesn't. For me, this afternoon fits decidedly in the second category.
Thursday, January 31, 2008
Tuesday, January 29, 2008
The New Normal
It just occurred to me today that at this point in our pregnancy we are typically to have one doctor's appointment a month. Our last appointment with our GP was on January 2nd. Our next one was to be on February 4th. Nice and normal. And yet, in between those two appointments we have had no less than 7 separate doctors' appointments. How much life has changed.
Thursday, January 24, 2008
8 hours of our day. (Week 22)
That's right, it's Thursday. And J-L and I sit by the computer with the most hope that we have felt in 2 weeks. There is very little new to report except for this: Jack has grown and if his tumour has grown at all it hasn't grown as fast as he has. And that is a good thing. His heart is still going strong and his size is as it should be at 22.5 weeks. And so, a little glimpse into our Thursdays from now until May 25th.
Wednesday, January 23, 2008
Random Thoughts on the Himp
- The hardest thing about our situation is the waiting. Waiting for a diagnosis as to what the himp (this is my name for the growth) is. Waiting to find out if it is indeed benign. Waiting to see if the himp gets bigger. Waiting to see if Jack will outgrow the himp. Always waiting.
- I find that I look forward to/dread Thursday afternoons. While I want to see how Jack is doing, and to be able to keep track of the himp's growth, I don't want to know if the himp is getting bigger. I don't want to know if Jack is developing an irregular heartbeat because the blood that is meant for him is being re-routed to the himp. I want to know, but I don't. And it drives me crazy.
- I wonder sometimes if God is tired of my prayer. I am not very imaginative when it comes to praying; it is pretty much "hello God, it's me again. Please let the himp go away. Please let Jack be born safely". I hope God is OK with boring prayer.
- 123 days until our due date of May 25th. One day closer to my little Jack-O-Lantern being born. One day closer to our lives going back to normal, whatever normal is for us now. One day closer to this nightmare being over. One day closer to holding our son.
Please continue to pray for us. As Cynthia said in an earlier post, we are truly humbled and blessed that so many people have us in their thoughts. We are grateful, and we are thankful for all of you; we couldn't go through this without you.
J-L
- I find that I look forward to/dread Thursday afternoons. While I want to see how Jack is doing, and to be able to keep track of the himp's growth, I don't want to know if the himp is getting bigger. I don't want to know if Jack is developing an irregular heartbeat because the blood that is meant for him is being re-routed to the himp. I want to know, but I don't. And it drives me crazy.
- I wonder sometimes if God is tired of my prayer. I am not very imaginative when it comes to praying; it is pretty much "hello God, it's me again. Please let the himp go away. Please let Jack be born safely". I hope God is OK with boring prayer.
- 123 days until our due date of May 25th. One day closer to my little Jack-O-Lantern being born. One day closer to our lives going back to normal, whatever normal is for us now. One day closer to this nightmare being over. One day closer to holding our son.
Please continue to pray for us. As Cynthia said in an earlier post, we are truly humbled and blessed that so many people have us in their thoughts. We are grateful, and we are thankful for all of you; we couldn't go through this without you.
J-L
Thursday, January 17, 2008
"Normal"
There was a moment during today's ultrasound when Dr. Schneider typed that word on the screen. I think it is the most beautiful word at the moment. That's probably what I wish for more than anything else.
A normal pregnancy.
A normal birth.
A normal son.
And maybe I get to have ONE of those someday in the next few years. We shall see and we shall hope and we shall pray.
Right now everything still seems to be in a state of uncertainty. They still don't know what it is but they are close to ruling out two things. It does not seem to be a standard tumour and it does not appear to be malignant. And the wait and see game continues... indefinitely.
I asked the surgeon if it is completely unreasonable to think that one day our son will be born, have this removed and will be completely normal in every other way. He (obviously) cannot guarantee anything but he also did not suggest that that is completely unreasonable. I will take any glimpses of hope that I can get.
And back to that word again: Normal. Dr. Schneider typed it in in reference to his heart. His heart seems to be going strong and seems to be completely fine. This is the biggest concern. They now believe that the mass is made up of a lot of blood vessels. A LOT of blood vessels. The tumour seems to be close to the same size as his head. And so they will watch it. We now have a standing date at the women's pavilion on Thursday afternoons. They will watch his heart and they will watch the growth of the mass.
There are things to be thankful for:
- thus far it appears that the growth is 100% external which means it is not affecting his organs
- thus far his heart is beating as it should
- it does not appear to be malignant
- we have an amazing doctor and team looking after us
- we both work at places that are kind to us even though we need many hours off work
There are still many things to pray for:
- our sanity
- Jack's heart to stay strong (I said to J-L that if he lives through all this Jack should be an athlete because his heart will be the strongest out there.)
- no growth in the mass
- 129 (give or take a few) more days in my womb
Again, thank you for your continued prayers. I'm sure we will continue to update this blog with our thoughts and worries but it might not be as continual a flow as we try to live Thursday to Thursday. You can count on at least an entry every Thursday afternoon.
A normal pregnancy.
A normal birth.
A normal son.
And maybe I get to have ONE of those someday in the next few years. We shall see and we shall hope and we shall pray.
Right now everything still seems to be in a state of uncertainty. They still don't know what it is but they are close to ruling out two things. It does not seem to be a standard tumour and it does not appear to be malignant. And the wait and see game continues... indefinitely.
I asked the surgeon if it is completely unreasonable to think that one day our son will be born, have this removed and will be completely normal in every other way. He (obviously) cannot guarantee anything but he also did not suggest that that is completely unreasonable. I will take any glimpses of hope that I can get.
And back to that word again: Normal. Dr. Schneider typed it in in reference to his heart. His heart seems to be going strong and seems to be completely fine. This is the biggest concern. They now believe that the mass is made up of a lot of blood vessels. A LOT of blood vessels. The tumour seems to be close to the same size as his head. And so they will watch it. We now have a standing date at the women's pavilion on Thursday afternoons. They will watch his heart and they will watch the growth of the mass.
There are things to be thankful for:
- thus far it appears that the growth is 100% external which means it is not affecting his organs
- thus far his heart is beating as it should
- it does not appear to be malignant
- we have an amazing doctor and team looking after us
- we both work at places that are kind to us even though we need many hours off work
There are still many things to pray for:
- our sanity
- Jack's heart to stay strong (I said to J-L that if he lives through all this Jack should be an athlete because his heart will be the strongest out there.)
- no growth in the mass
- 129 (give or take a few) more days in my womb
Again, thank you for your continued prayers. I'm sure we will continue to update this blog with our thoughts and worries but it might not be as continual a flow as we try to live Thursday to Thursday. You can count on at least an entry every Thursday afternoon.
Movements (Week 21)
I think every woman carrying a child obsesses a bit about the movement inside of her. I think that is natural and there is a certain comfort in having a baby that moves a lot (Abby moved CONSTANTLY - still does). This child does not move as much. (I know it's early and he'll likely pick it up as time goes by.) It is very hard (especially once you've been told there's a chance the child may die) NOT to become obsessed with the movements or lack thereof.
Tuesday, January 15, 2008
Thank you
I have a friend who has mentioned this blog to her mom's group.
I have another friend who has mentioned it in a forum that she belongs to.
My brother has his extended family praying for us.
I know of two internet friends who have linked this blog on their blogs.
My sister linked it on her blog.
My sister-in-law linked it on her blog and that in turn led to another link on someone else's blog.
There could be more that I don't know about (and would love to hear about).
And I feel completely overwhelmed and blessed by it all.
So, thank you.
I have another friend who has mentioned it in a forum that she belongs to.
My brother has his extended family praying for us.
I know of two internet friends who have linked this blog on their blogs.
My sister linked it on her blog.
My sister-in-law linked it on her blog and that in turn led to another link on someone else's blog.
There could be more that I don't know about (and would love to hear about).
And I feel completely overwhelmed and blessed by it all.
So, thank you.
Running total
Because if nothing else, keeping the stats might be distracting. We found out the news on Thursday. That is 5 days ago. Since that time we have had contact with 13 doctors or techs or social workers. (That doesn't include receptionists and administrative people - strictly the white coats.) And it's only just begun.
And so it goes
I feel as though I need to come on here regularly as I promised I would. And yet, there is just so little to tell.
The appointment with the geneticist felt like a giant waste of time. (Although as a complete aside: He looked exactly what a geneticist should look like. A cross between this and this.) There is nothing genetic about this tumour and I think they knew that all along. Don't get me wrong, I understand the need to look into every possibility but emotionally it becomes very draining to answer the exact same questions over and over and over again.
We met with Dr. Schneider again. I believe she will be our main contact throughout all this and I could almost write sonnets about her. She is lovely and is doing without a doubt what God put her on this earth to do. She is smart and kind and wants so badly to give us answers and to give us hope. But, she can't and I have a feeling that's tremendously hard on her. I have a feeling she is scouring the medical books every night since she first viewed the ultrasound. And we get to hear words like "very unusual" and "extremely rare" and if it's X there are only about 100 cases worldwide which are all very exhausting words to hear and make me want to crawl into bed and close my eyes until this is all over.
Then it was time to head over to the General Hospital for our MRI. Goodness, that was fun (she says, sarcastically). Because (a) Jack moves so much and (b) he's so tiny and (c) (in case we haven't reiterated it enough) they've never seen anything like it I am stuck inside that white tube for what seemed like hours but I believe in total was about 45 minutes. 45 minutes of not moving. About 20 minutes in I felt as though my arms were going to fall off from the pressure of being in the same position. I actually had thoughts of: Was labour worse than this? I know, crazy but that did enter my brain.
And now we wait some more. And it's very doubtful that they'll get good images from the MRI or that they will be at all useful. And it's so hard not to be frustrated. The next step after that is a meeting with the surgeon (who will also not be able to tell us anything). The following step is for them to inject a needle into the tumour to see what type of cells they are and if they are malignant or benign. But that has to wait. They don't want to do it too early as it puts Jack at risk and they want him to be a bit bigger first.
And so it goes.
The appointment with the geneticist felt like a giant waste of time. (Although as a complete aside: He looked exactly what a geneticist should look like. A cross between this and this.) There is nothing genetic about this tumour and I think they knew that all along. Don't get me wrong, I understand the need to look into every possibility but emotionally it becomes very draining to answer the exact same questions over and over and over again.
We met with Dr. Schneider again. I believe she will be our main contact throughout all this and I could almost write sonnets about her. She is lovely and is doing without a doubt what God put her on this earth to do. She is smart and kind and wants so badly to give us answers and to give us hope. But, she can't and I have a feeling that's tremendously hard on her. I have a feeling she is scouring the medical books every night since she first viewed the ultrasound. And we get to hear words like "very unusual" and "extremely rare" and if it's X there are only about 100 cases worldwide which are all very exhausting words to hear and make me want to crawl into bed and close my eyes until this is all over.
Then it was time to head over to the General Hospital for our MRI. Goodness, that was fun (she says, sarcastically). Because (a) Jack moves so much and (b) he's so tiny and (c) (in case we haven't reiterated it enough) they've never seen anything like it I am stuck inside that white tube for what seemed like hours but I believe in total was about 45 minutes. 45 minutes of not moving. About 20 minutes in I felt as though my arms were going to fall off from the pressure of being in the same position. I actually had thoughts of: Was labour worse than this? I know, crazy but that did enter my brain.
And now we wait some more. And it's very doubtful that they'll get good images from the MRI or that they will be at all useful. And it's so hard not to be frustrated. The next step after that is a meeting with the surgeon (who will also not be able to tell us anything). The following step is for them to inject a needle into the tumour to see what type of cells they are and if they are malignant or benign. But that has to wait. They don't want to do it too early as it puts Jack at risk and they want him to be a bit bigger first.
And so it goes.
Monday, January 14, 2008
Quick update
Geneticist appointment at 10:30 am today.
MRI appointment at 1:30 pm today.
And it just feels surreal to have words like "geneticist" and "MRI" and "surgeon" written on my calendar like they're the next concert or a lunch date with someone.
MRI appointment at 1:30 pm today.
And it just feels surreal to have words like "geneticist" and "MRI" and "surgeon" written on my calendar like they're the next concert or a lunch date with someone.
Sunday, January 13, 2008
An open letter to God:
Before I start, God, I am going to be asking and saying a lot of things that I already know the answers to, but I need to say them, so please hear me out.
I’m sitting here tonight, not sure what to say, or think, or do, but I feel like I have to write something. I am not the best writer in the world, or in Canada, or even in my own home (Cynthia is blessed with that gift), but I want to tell You a bit about what has transpired to our little family in the last 48 hours.
Our unborn son Jack is only 20 weeks old. He has a tumor on his back. We don’t know what type of tumor it is yet, or how quickly it is growing, but we know that it is quite large, and that his life is in danger. Our boy is healthy; his heart, brain, lungs, and limbs are developing as they should. He is active, and kicking up a storm. The doctors say that he is perfect in every way. Except for one. The tumor. The cursed tumor. The one that I would take onto my rather large body a million times over to avoid my son having it on his tiny little body. The one that has me so angry that I can hardly see or think straight. The one that may kill my beloved Jack. The one.
There are so many questions that I have to, need to ask. How did this happen? Why did it happen? Why Jack? Is Jack in pain from this growth on his back? Was it detectable at the first ultrasound 5 weeks ago? Why us? Can the doctors save him? Will the tumor indeed be benign? Will it attach to his spinal chord? Will he outgrow the tumor to ensure that it is safe for him to be born? How will this affect his quality of life?
I love You, God, and I believe in You. I’ve grown a lot spiritually in the past 4 years, and I have come to know that You are a kind and merciful God. When Cynthia’s dad was killed, her family, while devastated by his death, knew that this was Your plan for him and them, and they accepted it. I learned a lot about faith from that incident. I have seen firsthand Your love time and time again. Bringing Cynthia into my life, and blessing us with two beautiful children, that was Your work, and I am very thankful for it.
So tonight, Lord, I sit before You, Your servant, scared, confused, and humbled, and I have to ask You for something. A favor. A big favor. Something that I’m not sure I have the right to ask You, but will nonetheless. The biggest, most selfish thing that I could ever ask for:
Please don’t take my boy.
I know that he belongs to You, we all belong to You. And I know that You have a plan for all of us. And I know that You may need him in Heaven. But I need him too. I need to see his face, to hear him cry, see him drink from his mother’s breast. I need to see him laugh, and cry, and drive his big sister crazy. I need to see him ride his bike, go to school, learn to drive. I need to see him graduate from college, get married, and have a family of his own. I need to hold him, to kiss him, to give him a karate chop. I need to raise him. I need to teach him about life. I need to teach him about You. I need him.
I have nothing to offer You. Lord. All I have is a father’s burning love for his unborn son that knows no boundaries, and the hope that it is not Jack’s time to be reunited with You.
There will be many more prayers to You, God. Please know that I have only begun to pray. Please don’t get tired of hearing from me. I need You to hear me. I need You to answer my prayers.
Please don’t take my boy.
J-L
I’m sitting here tonight, not sure what to say, or think, or do, but I feel like I have to write something. I am not the best writer in the world, or in Canada, or even in my own home (Cynthia is blessed with that gift), but I want to tell You a bit about what has transpired to our little family in the last 48 hours.
Our unborn son Jack is only 20 weeks old. He has a tumor on his back. We don’t know what type of tumor it is yet, or how quickly it is growing, but we know that it is quite large, and that his life is in danger. Our boy is healthy; his heart, brain, lungs, and limbs are developing as they should. He is active, and kicking up a storm. The doctors say that he is perfect in every way. Except for one. The tumor. The cursed tumor. The one that I would take onto my rather large body a million times over to avoid my son having it on his tiny little body. The one that has me so angry that I can hardly see or think straight. The one that may kill my beloved Jack. The one.
There are so many questions that I have to, need to ask. How did this happen? Why did it happen? Why Jack? Is Jack in pain from this growth on his back? Was it detectable at the first ultrasound 5 weeks ago? Why us? Can the doctors save him? Will the tumor indeed be benign? Will it attach to his spinal chord? Will he outgrow the tumor to ensure that it is safe for him to be born? How will this affect his quality of life?
I love You, God, and I believe in You. I’ve grown a lot spiritually in the past 4 years, and I have come to know that You are a kind and merciful God. When Cynthia’s dad was killed, her family, while devastated by his death, knew that this was Your plan for him and them, and they accepted it. I learned a lot about faith from that incident. I have seen firsthand Your love time and time again. Bringing Cynthia into my life, and blessing us with two beautiful children, that was Your work, and I am very thankful for it.
So tonight, Lord, I sit before You, Your servant, scared, confused, and humbled, and I have to ask You for something. A favor. A big favor. Something that I’m not sure I have the right to ask You, but will nonetheless. The biggest, most selfish thing that I could ever ask for:
Please don’t take my boy.
I know that he belongs to You, we all belong to You. And I know that You have a plan for all of us. And I know that You may need him in Heaven. But I need him too. I need to see his face, to hear him cry, see him drink from his mother’s breast. I need to see him laugh, and cry, and drive his big sister crazy. I need to see him ride his bike, go to school, learn to drive. I need to see him graduate from college, get married, and have a family of his own. I need to hold him, to kiss him, to give him a karate chop. I need to raise him. I need to teach him about life. I need to teach him about You. I need him.
I have nothing to offer You. Lord. All I have is a father’s burning love for his unborn son that knows no boundaries, and the hope that it is not Jack’s time to be reunited with You.
There will be many more prayers to You, God. Please know that I have only begun to pray. Please don’t get tired of hearing from me. I need You to hear me. I need You to answer my prayers.
Please don’t take my boy.
J-L
Friday, January 11, 2008
The name
J-L and I had been throwing the name Jack around for awhile now. In fact, J-L had been calling him that for weeks (we were quite confident after the first ultrasound that he was indeed a boy). And yet, this morning I asked him to stop. I needed to think about it. It suddenly became very important that the name mean something. That it be significant and not just a name we like. (His middle name is very significant - it is the same as his paternal grandfather). And so I got to work. I searched Bible name sites and sites containing the meanings of names. And then, when I still wasn't satisfied I decided to look at what Jack meant after all.
Gracious gift of God.
And it suddenly became very apparent that that was his name.
It only just occurred to me a few hours ago that we inadvertently named our son after my two brothers in a way. My one brother has the middle name of John and my other brother was called Jack by my father (as a nickname that is really in no way connected to his given name, my dad was that way. One of my nicknames was Trudy). What a wonderful little extra blessing.
Gracious gift of God.
And it suddenly became very apparent that that was his name.
It only just occurred to me a few hours ago that we inadvertently named our son after my two brothers in a way. My one brother has the middle name of John and my other brother was called Jack by my father (as a nickname that is really in no way connected to his given name, my dad was that way. One of my nicknames was Trudy). What a wonderful little extra blessing.
Introductory post (Week 20)
And there we are. Our planned 20 week ultrasound. A day we've been looking forward to because we're going to find out the sex this time AND (more importantly) we get to see our baby on screen again. Delightful.
And then the ultrasound tech says: "I'm just going to show the doctor these images, to make sure I've taken all the photos I need." And I think: "Oh no, you're not. Something's wrong."
And something is. And in comes the doctor to probe some more. And he throws out words like "growth" and "mass" and "spina bifida". And it gets difficult to breathe.
And they whisk us over to the Women's Pavilion for a fetal assessment. And 3 more people probe at my belly and look at images and take photos.
It turns out our little baby boy has a giant tumour on his back. And I sit here not knowing what to type after that - except that I know this. We need prayers and lots of them because God can do miracles and we are expecting nothing less at this point.
They know very little right now. They know that he has a tumour on his back and that it is big but they've never seen one in this location and they have no idea if it will grow or if it will just stay the same size. At this point he's healthy in every other way. He is kicking and his lungs and brain and heart are all functioning perfectly well. He doesn't seem the least bit bothered by the tumour at this point. (They are relatively confident that it's NOT spina bifida as they would likely see affects on the brain if it were.)
And now we enter the "wait and see" game. They don't anything and we know even less. We are seeing the pediatric surgeon next Thursday and a geneticist on Monday. (If things stay as they
are our baby will have to have surgery shortly after coming out - hence the surgeon.) We also have to go for an MRI but that has not yet been booked.
What else can I tell you? I guess our prayer is that the tumour either disappear entirely (the miracle) or that it not grow at all and not affect our baby at all (that's one of the biggest concerns - that it grow at too rapid a pace and then also affect the baby and his organs and puts his life at risk).
And, we've decided that we will create a bit of a blog with updates. That way you can keep as informed as you want to. Who knows, maybe the blog will only last a few weeks because the news will be so good so quickly.
And the other thing is, we have named him. Because we need to. Because he is our son. His name is Jackson Louis. You can call him Jack. Because he is our "gracious gift from God".
Cynthia, J-L, Abigail and Jack
And then the ultrasound tech says: "I'm just going to show the doctor these images, to make sure I've taken all the photos I need." And I think: "Oh no, you're not. Something's wrong."
And something is. And in comes the doctor to probe some more. And he throws out words like "growth" and "mass" and "spina bifida". And it gets difficult to breathe.
And they whisk us over to the Women's Pavilion for a fetal assessment. And 3 more people probe at my belly and look at images and take photos.
It turns out our little baby boy has a giant tumour on his back. And I sit here not knowing what to type after that - except that I know this. We need prayers and lots of them because God can do miracles and we are expecting nothing less at this point.
They know very little right now. They know that he has a tumour on his back and that it is big but they've never seen one in this location and they have no idea if it will grow or if it will just stay the same size. At this point he's healthy in every other way. He is kicking and his lungs and brain and heart are all functioning perfectly well. He doesn't seem the least bit bothered by the tumour at this point. (They are relatively confident that it's NOT spina bifida as they would likely see affects on the brain if it were.)
And now we enter the "wait and see" game. They don't anything and we know even less. We are seeing the pediatric surgeon next Thursday and a geneticist on Monday. (If things stay as they
are our baby will have to have surgery shortly after coming out - hence the surgeon.) We also have to go for an MRI but that has not yet been booked.
What else can I tell you? I guess our prayer is that the tumour either disappear entirely (the miracle) or that it not grow at all and not affect our baby at all (that's one of the biggest concerns - that it grow at too rapid a pace and then also affect the baby and his organs and puts his life at risk).
And, we've decided that we will create a bit of a blog with updates. That way you can keep as informed as you want to. Who knows, maybe the blog will only last a few weeks because the news will be so good so quickly.
And the other thing is, we have named him. Because we need to. Because he is our son. His name is Jackson Louis. You can call him Jack. Because he is our "gracious gift from God".
Cynthia, J-L, Abigail and Jack
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