Thursday, August 30, 2012
Theo update
Theo's white count jumped up to 3.78 today!!!! Woo hoo! That's double yesterday! His counts haven't been over 1.2 since November. (Apparently the normal range is 4.0 to 10.5.) HUGE jump! They took the blood today to run the chimerization labs which is what they use to determine if Theo's bone marrow is 100% donor and none of his. Of course when Dr. Gordon asked Theo if he knew what chimerization is, Theo said, "I know what a Chimera is. The mythical beast that's part goat, part lion and part snake. So, can I have lobster claws? That would be awesome."
Thursday, August 23, 2012
The Journey
Waited til tonight to post. Had a really rough day. Theo was really disoriented this morning. The Dr ordered an MRI. It appears that Theo is having an adverse reaction to Cyclosporine causing him to show signs of something called PRES. Theo lost his vision temporarily on two occasions today. One of which caused him to fall in the bathroom. Needless to say, we are scared...Theo is extremely depressed and confused as to what is going on...and we all are just not dealing well at the moment. The Dr and nurses are being great and on top of everything. They have switched his meds and hopefully will reverse the PRES within 48 hrs.
The whole ordeal just sucks on so many levels...we pray no one ever has to experience this. Theo is tired of being a "poster child" and just wants to be a normal 14 year old. His faith is shaken to its core and he is just so angry and upset. I can't tell you what its like to watch your child suffer like this. We all just want to fast forward to next year when Theo is back to his old self enjoying life.
Until then...we sit and say it's going to be ok...and can't do a damn thing to help. That just sucks...
The whole ordeal just sucks on so many levels...we pray no one ever has to experience this. Theo is tired of being a "poster child" and just wants to be a normal 14 year old. His faith is shaken to its core and he is just so angry and upset. I can't tell you what its like to watch your child suffer like this. We all just want to fast forward to next year when Theo is back to his old self enjoying life.
Until then...we sit and say it's going to be ok...and can't do a damn thing to help. That just sucks...
Saturday, August 18, 2012
The Journey...
We decided to post my family's journey on the blog here so you all can follow along. If you are on Facebook...you probably have already seen these. But if not, this will catch you up:
August 18
The journey continues...Last night Theo was running a fever of 105. They did everything they could to bring it down. Cold wet towels, meds and a liquid cooled pad that he slept on. They have been able to get it down a bit but he has been at 103 most of the day. He also now had a big rash all over his torso. We are hoping that these are the first signs of engraftment. They usually are but this is very early for the process to begin. So tonight they added 3 more drugs and have ordered CT scans to ensure there is nothing out of the ordinary going on. Sucks to watch your kid shivering uncontrollably all day. I woke up this morning and couldn't get out of bed. Threw my neck/back out. Isn't that just frickin great? OK pity party over...Emi went home today to see Brady (who has been sick with a 101 fever) He is feeling better finally. Hoping tomorrow is a better day...we need it.
August 16
It's been the hardest 3 days of the journey thus far. Theo is struggling with a fever, the mouth sores are just so uncomfortable, he is still vomiting once a day or so, he still hasn't eaten and his hair finally fell out tonight. While we prepared for this valley it still doesn't make it easy to walk through it. We know there is a light at the end of this tunnel but we just wish it was closer than it appears. We are now 7 days post transplant and 20 days in total. It feels like months.
Emi and I attended the Grand Opening of the new Bone Marrow Unit at the hospital this evening. It is sponsored by Kids Beating Cancer and is just beautiful. We met the organization's founder, Margaret, who lost her son 20 years ago to the same illness that Theo has. Her determination has allowed families like us to stay in central Florida rather than going out of state to a pediatric bone marrow unit. She is an inspiration and I look forward to helping her in any way I can once we get out of here. The Unit should open officially the first week of Sept and Theo will be the first patient. We found out tonight that he is the 13th pediatric bone marrow transplant recipient at Florida Hospital. Lucky #13.
Even though we are finding it hard to pray at this time while we are watching our son struggle so much...we know we have so many of you that are doing it for us. That is what being a Christian is all about. Doing the hard things when no one asks you to...Thank you for that. Those prayers are building a bridge that will carry us back when this is over.
Love you...B
August 14
It's been a down few days. Theo's spirits are down. This is totally expected and part of the process...but it still sucks to watch him go through it. The mouth sores started today today from all the chemo. Not fun. They are trying to limit his pain. He hasn't eaten for a week so they started a nutrients bag last night. He is down to 130 lbs. We knew this would be the hardest chapter of this journey...taking it day by day...thank you for the continued prayers.
August 9
TRANSPLANT FINISHED! It took way longer than expected...but the entire bag of marrow is now in Theo. His body will freak out a bit over the next week as it tries to engraft into his body, but the big step is completed. Thank you to all who prayed for us today and we ask that you keep praying until we can report the transplant has fully engrafted. Still a long road ahead but we are walking towards the light...
August 9
DAY - 0: TRANSPLANT DAY! "For you have been born again, not of perishable seed, but of imperishable, through the living and enduring word of God." 1 Peter 1:23 Today my son receives his bone marrow transplant at 10 am. This day holds a special place in our hearts for a couple of reasons. Today would have been my brother-in-law's 36th birthday. He was tragically killed 8 years ago. He was also the person that brought me back to God. It seems only fitting that Theo receives a new life on the day that the person who saved mine was born. Life is so fragile. It is our prayer that today, while so many are praying for us, that you take a minute out of your day and tell someone you love them. Forgive someone you've been holding a grudge against. Make that call to a distant relative or friend. Lay down that burden you've been carrying for so long. Most of all...embrace this life you've been given, hug your family tight and thank God for the love and grace that holds us all together. For everyone that has been praying for us and following Theo's progress...we truly say thank you, we love you and your care for us has been the greatest testament to the love Jesus promises that we've ever experienced. Praise God!
August 18
The journey continues...Last night Theo was running a fever of 105. They did everything they could to bring it down. Cold wet towels, meds and a liquid cooled pad that he slept on. They have been able to get it down a bit but he has been at 103 most of the day. He also now had a big rash all over his torso. We are hoping that these are the first signs of engraftment. They usually are but this is very early for the process to begin. So tonight they added 3 more drugs and have ordered CT scans to ensure there is nothing out of the ordinary going on. Sucks to watch your kid shivering uncontrollably all day. I woke up this morning and couldn't get out of bed. Threw my neck/back out. Isn't that just frickin great? OK pity party over...Emi went home today to see Brady (who has been sick with a 101 fever) He is feeling better finally. Hoping tomorrow is a better day...we need it.
August 16
It's been the hardest 3 days of the journey thus far. Theo is struggling with a fever, the mouth sores are just so uncomfortable, he is still vomiting once a day or so, he still hasn't eaten and his hair finally fell out tonight. While we prepared for this valley it still doesn't make it easy to walk through it. We know there is a light at the end of this tunnel but we just wish it was closer than it appears. We are now 7 days post transplant and 20 days in total. It feels like months.
Emi and I attended the Grand Opening of the new Bone Marrow Unit at the hospital this evening. It is sponsored by Kids Beating Cancer and is just beautiful. We met the organization's founder, Margaret, who lost her son 20 years ago to the same illness that Theo has. Her determination has allowed families like us to stay in central Florida rather than going out of state to a pediatric bone marrow unit. She is an inspiration and I look forward to helping her in any way I can once we get out of here. The Unit should open officially the first week of Sept and Theo will be the first patient. We found out tonight that he is the 13th pediatric bone marrow transplant recipient at Florida Hospital. Lucky #13.
Even though we are finding it hard to pray at this time while we are watching our son struggle so much...we know we have so many of you that are doing it for us. That is what being a Christian is all about. Doing the hard things when no one asks you to...Thank you for that. Those prayers are building a bridge that will carry us back when this is over.
Love you...B
August 14
It's been a down few days. Theo's spirits are down. This is totally expected and part of the process...but it still sucks to watch him go through it. The mouth sores started today today from all the chemo. Not fun. They are trying to limit his pain. He hasn't eaten for a week so they started a nutrients bag last night. He is down to 130 lbs. We knew this would be the hardest chapter of this journey...taking it day by day...thank you for the continued prayers.
August 9
TRANSPLANT FINISHED! It took way longer than expected...but the entire bag of marrow is now in Theo. His body will freak out a bit over the next week as it tries to engraft into his body, but the big step is completed. Thank you to all who prayed for us today and we ask that you keep praying until we can report the transplant has fully engrafted. Still a long road ahead but we are walking towards the light...
August 9
DAY - 0: TRANSPLANT DAY! "For you have been born again, not of perishable seed, but of imperishable, through the living and enduring word of God." 1 Peter 1:23 Today my son receives his bone marrow transplant at 10 am. This day holds a special place in our hearts for a couple of reasons. Today would have been my brother-in-law's 36th birthday. He was tragically killed 8 years ago. He was also the person that brought me back to God. It seems only fitting that Theo receives a new life on the day that the person who saved mine was born. Life is so fragile. It is our prayer that today, while so many are praying for us, that you take a minute out of your day and tell someone you love them. Forgive someone you've been holding a grudge against. Make that call to a distant relative or friend. Lay down that burden you've been carrying for so long. Most of all...embrace this life you've been given, hug your family tight and thank God for the love and grace that holds us all together. For everyone that has been praying for us and following Theo's progress...we truly say thank you, we love you and your care for us has been the greatest testament to the love Jesus promises that we've ever experienced. Praise God!
Friday, August 17, 2012
A Note From Big Kettle Drum Lead Singer
A note from Brant:
As a father, it hurts to see Theo in pain. As a man, its frustrating to not be able to "fix" the situation and make it better. In the midst of this struggle, when I am down and out, people with the best of intentions want to do anything and everything to "fix" me. Make me better. Take my mind off the situation at hand. They tell me stories, quote me scripture and just want to be a little light in the darkness.
At this moment, I find it so hard to accept it. As much as being an island is not healthy or the "right" thing to do...somehow the loneliness is comforting. As a songwriter, I have to find solace in these moments. A few weeks back, JT came to visit. I told him how I was feeling. I just wanted to be left alone and let me be sad. I needed to mourn the upcoming process. He played this beautiful riff on the guitar. I started to write exactly what I was feeling. This is what came out...
Listen to it and know that my heart is softening and the love and prayers from all of you are the reason why.
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