Dear Family and Friends,
Well, we are "on" for Monday's surgery. It is scheduled between 11:00 - 12:00. Will arrive at CHOC at about 8:30/9:00. Cody is really looking forward to this. We will get a blood transfusion on Friday then on Monday, just prior to the surgery, will have a platelet transfusion, just to get him "pumped" up. His labs today continue to show improvement, on their own.
We had an awesome day today. He had pool therapy and he was amazing. Made my heart sing to see his enthusiasm and tenacity. He so wants to walk again. He walked, with assistance the length of the 10' pool and back, twice. Jumped off the steps (in the pool), smiling the whole time.
Please pray for wisdom for the surgeon; that God guides his hands, that Cody's recovery is expedient and the surgery is successful beyond our expectations.
Grateful for your faithful prayers,
The Days
Friday, September 18, 2009
Thursday, August 20, 2009
"Mom...I am so fortunate that so many people pray for me...."
Dear Family and Friends,
This is too precious not to share. This is just a glimpse of Cody's humble, thoughtful and sweet character.
Tonight, after reading with Cody, I was was explaining to Cody how important it is for him to pray to God directly, to give thanks and to ask God, for himself, for complete healing, not just me or dad thanking and asking. We continued with our prayers: Thanking God for His many blessings, praying for complete healing for Cody..to bless our sleep and our day tomorrow...etc I was just about to say amen, in which Cody usually chimes in with his "amen", when he stopped me.
He reflectively said, "Mom...I am so fortunate that so many people pray for me...." As he really thought about it, he was overcome with gratitude...just picturing in his mind the hundreds, maybe thousands, of people praying for him. This was just too much for him to absorb. He was humbled to tears. I asked him if they were joyful tears. He shook his head yes. Such a tender, tender moment.
Then he asked, "What about all of the other children that are sick and all of the nurses that take care of them? ....especially the ones on the third floor. (oncology floor) Don't they need a lot of prayer too?" Yes, indeed, they do. Amen. Would you please say a special prayer for all cancer kids and the nurses who care for them?.....for Cody?
Had to share this as he (we) are so very, very grateful for your faithful prayers and kindness and the profound affect you all have on us through your acts of kindness and prayer. We so appreciate you staying steady with us through this amazing, turbulent journey.
With Much Gratitude,
The Days
This is too precious not to share. This is just a glimpse of Cody's humble, thoughtful and sweet character.
Tonight, after reading with Cody, I was was explaining to Cody how important it is for him to pray to God directly, to give thanks and to ask God, for himself, for complete healing, not just me or dad thanking and asking. We continued with our prayers: Thanking God for His many blessings, praying for complete healing for Cody..to bless our sleep and our day tomorrow...etc I was just about to say amen, in which Cody usually chimes in with his "amen", when he stopped me.
He reflectively said, "Mom...I am so fortunate that so many people pray for me...." As he really thought about it, he was overcome with gratitude...just picturing in his mind the hundreds, maybe thousands, of people praying for him. This was just too much for him to absorb. He was humbled to tears. I asked him if they were joyful tears. He shook his head yes. Such a tender, tender moment.
Then he asked, "What about all of the other children that are sick and all of the nurses that take care of them? ....especially the ones on the third floor. (oncology floor) Don't they need a lot of prayer too?" Yes, indeed, they do. Amen. Would you please say a special prayer for all cancer kids and the nurses who care for them?.....for Cody?
Had to share this as he (we) are so very, very grateful for your faithful prayers and kindness and the profound affect you all have on us through your acts of kindness and prayer. We so appreciate you staying steady with us through this amazing, turbulent journey.
With Much Gratitude,
The Days
Wednesday, August 19, 2009
Cody, Trulu God's miracle
Dear Family and Friends,
Cody continues to amaze us all, particularly the doctors. He is truly God's miracle. We have been going down to the beach...using the all terrain wheel chair, compliments of the Laguna Beach Life Guard station. This wheel chair allows us to forge on the beach and in the water if we so choose. However, we have chosen to stay out of the water...just wheels in, dodging the incoming surf. This brings great joy, fresh air, a little vitamin D (sun) and exercise to us all. It is such a joy to see him smile and laugh.
Cody continues to improve. He has mostly good days and some challenging days. We seem to have his pain mostly under control. We have vigilantly been using alternative methods to deal with his cancer and pain; juicing fresh vegies and fruit and administering through his feeding tube. He doesn't mind the taste of fruit juice concoctions, however, he is not so fond of the vegie concoction. He has been eating and drinking some; mostly birdie portions. We are happy with whatever he can get down. We have also been giving him electro therapy (like a tens unit only milder) to help with pain and wake up good cells in his body.
We are scheduled on August 31 to have revasculation surgery, which is fairly minor. The purpose of this surgery is to increase the blood flow to his brain and hopefully restore/improve some of the things he lost and hopefully be rid of the challenging moments of hallucinations and confusion. We are requesting an MRI prior to surgery to check status of brain rejuvenation and tumors.
Cody is looking forward to school starting...what it looks like....we don't know yet. We are hoping to have the tutor he had a couple of years ago as it was a great fit and he was really motivated. We had discussed with the school district to have a video cam for a class or two so he could stay plugged in remotely both for social and academic purposes. We are hoping and praying this can be arranged.
We are very grateful for the many answered prayers however, we are still in need of prayer for:
Appreciate your faithful prayers.
The Days
Cody continues to amaze us all, particularly the doctors. He is truly God's miracle. We have been going down to the beach...using the all terrain wheel chair, compliments of the Laguna Beach Life Guard station. This wheel chair allows us to forge on the beach and in the water if we so choose. However, we have chosen to stay out of the water...just wheels in, dodging the incoming surf. This brings great joy, fresh air, a little vitamin D (sun) and exercise to us all. It is such a joy to see him smile and laugh.
Cody continues to improve. He has mostly good days and some challenging days. We seem to have his pain mostly under control. We have vigilantly been using alternative methods to deal with his cancer and pain; juicing fresh vegies and fruit and administering through his feeding tube. He doesn't mind the taste of fruit juice concoctions, however, he is not so fond of the vegie concoction. He has been eating and drinking some; mostly birdie portions. We are happy with whatever he can get down. We have also been giving him electro therapy (like a tens unit only milder) to help with pain and wake up good cells in his body.
We are scheduled on August 31 to have revasculation surgery, which is fairly minor. The purpose of this surgery is to increase the blood flow to his brain and hopefully restore/improve some of the things he lost and hopefully be rid of the challenging moments of hallucinations and confusion. We are requesting an MRI prior to surgery to check status of brain rejuvenation and tumors.
Cody is looking forward to school starting...what it looks like....we don't know yet. We are hoping to have the tutor he had a couple of years ago as it was a great fit and he was really motivated. We had discussed with the school district to have a video cam for a class or two so he could stay plugged in remotely both for social and academic purposes. We are hoping and praying this can be arranged.
We are very grateful for the many answered prayers however, we are still in need of prayer for:
- regenerated platelet and white blood cells
- all pain goes away
- regained physical strength, in a mighty way
- an unquenchable appetite and thirst
- healed body (tumors be gone!)
- comfort in our Lord, good spirits, strong will
Appreciate your faithful prayers.
The Days
Friday, August 07, 2009
Cody continues to baffle everyone
Cody continues to baffle everyone. One doctor said it wouldn’t surprise him if Cody sat up and started playing the piano tomorrow based on how much he has improved in a short amount of time considering how his condition a couple of weeks ago.
He has been spending 2 – 5 hours a day in his wheel chair, he is staying awake longer, his humor intact. We have been outdoors to the rose garden at St. Joseph Hospital across the street almost every day last week; he has been read to daily; We went down to the basement at CHOC for physical therapy in the pool last Friday and again Monday; it was very fun for all of us....our summ er days at the “beach”.
We are grateful for the miracles already given and praying for and needing more. Cody’s blood and platelet counts still need to be transfused every few days…but, overall have been improving, albeit slow. However, any further treatment is on hold indefinitely and may not be feasible. Once home, we will go to the clinic weekly for labs and a check up.
We are scheduled to go home this Friday and preparing for the blessed event. It has been about 80 days since we have all been home together and are looking forward to being together as a family once again…..a true celebration.
Same prayer request for Cody as last update:
- regenerated platelet and blood cells
- pain relief - that all pain goes away
- regained physical strength, in a mighty way
- an unquenchable appetite and thirst
- healed body (tumors be gone!)
- comfort in our Lord, good spirits, strong will
Appreciate your faithful prayers and blessings to you.
Sunday, July 26, 2009
"Uh, Dad, I think you need that operation!"
Dear Family and Friends,
Cody was moved from OICU to the regular floor on 7/19. We have been enjoying a room to ourselves and hopefully our next move will be home.
He is not able to walk yet and has limited use of his right hand...but....he has his speech back and his sense of humor....thank you God!! We have been getting him in the wheelchair everyday this week for a couple of hours a day to help build strength. On Tuesday we were in the playroom. The volunteer asked about the incision on Cody's scalp. Dave explained that Cody had a shunt put in and added, "While they were there, they should have put some more brains in." Cody didn't miss a beat, "Uh, Dad, I think you need that operation!" So grateful to have him back. :) .....they banter like brothers.
He is slowly building up his strength. He has neuropathy in his left hand and right foot, which is very painful for him and is slow going for rehabilitation because of it. We started new medication for the neuropathy this week and seems to be helping. He got the OK to start drinking water and birdie bites of soft food. (his main food/nutrition is still his feeding tube).
His white cells and platelet counts are struggling to go up. He has had to have a booster to help in addition to blood and platelet transfusions. In order to continue treatment for cancer, our main battle, his counts have to be a certain level, on their own, for a few days. The doctors are thinking maybe next week?
There is talk of us going home, but Cody has to get stronger first. The last thing we want to do is have to go to ER as soon as we get home.
New hospital rules are no visitors other than parents due to the concern of swine flu. They are very serious and taking no risks...which is a good thing.
Our prayer request this week is for God to bless Cody with:
The Days
Cody was moved from OICU to the regular floor on 7/19. We have been enjoying a room to ourselves and hopefully our next move will be home.
He is not able to walk yet and has limited use of his right hand...but....he has his speech back and his sense of humor....thank you God!! We have been getting him in the wheelchair everyday this week for a couple of hours a day to help build strength. On Tuesday we were in the playroom. The volunteer asked about the incision on Cody's scalp. Dave explained that Cody had a shunt put in and added, "While they were there, they should have put some more brains in." Cody didn't miss a beat, "Uh, Dad, I think you need that operation!" So grateful to have him back. :) .....they banter like brothers.
He is slowly building up his strength. He has neuropathy in his left hand and right foot, which is very painful for him and is slow going for rehabilitation because of it. We started new medication for the neuropathy this week and seems to be helping. He got the OK to start drinking water and birdie bites of soft food. (his main food/nutrition is still his feeding tube).
His white cells and platelet counts are struggling to go up. He has had to have a booster to help in addition to blood and platelet transfusions. In order to continue treatment for cancer, our main battle, his counts have to be a certain level, on their own, for a few days. The doctors are thinking maybe next week?
There is talk of us going home, but Cody has to get stronger first. The last thing we want to do is have to go to ER as soon as we get home.
New hospital rules are no visitors other than parents due to the concern of swine flu. They are very serious and taking no risks...which is a good thing.
Our prayer request this week is for God to bless Cody with:
- regenerated platelet and blood cells
- pain relief - that all pain goes away
- regained physical strength, in a mighty way
- an unquenchable appetite and thirst
- healed body (tumors be gone!)
- comfort in our Lord, good spirits, strong will
The Days
Tuesday, July 14, 2009
HUGE PRAISE!!!
Dear Family and Friends,
HUGE PRAISE!!!
As Profoundly as we walked down into the valley.....we are as profoundly walking up to the mountain tops! Over the week end Cody began speaking, moving his limbs and digits. As dumbfounded as the doctors were at the loss of these things, they are as dumbfounded that they are returning....in a very joyful way. God is answering our prayers of miracles. Thank you for faithfully praying.
I can't begin tell you how excited we are with this turn of events. On Friday..he was trying to form words...they just weren't coming out quite yet. Sunday, when Nana and Poppi were visiting he was able to point to his eye, cross his arms and point at Poppi (Poppi's favorite way to say I love you to Cody) then he smiled a big smile. He spoke a few words. I then asked him if we should call daddy. He shook his head yes. Called Dave and told him someone wanted to talk to him. I held the phone to Cody's ear and he said "hi daddy" the sweetest words ever! (I was already savoring his first hello)
They spoke for a bit.. Cody ended the conversation with "I love you daddy". Our next call was to grandma and grandpa Lienemann..they spoke for a bit. He was totally cognizant, just a little shaky.
There are other things Cody is able to do that he wasn't able to, however, he would be upset with me if I shared those, so I'll let your imagination put it together. He has continually improved a little each day since then. He started back with occupational and physical therapy today.
He had an angiogram on his brain. It was determined that some veins were clogged due to chemo and radiation treatment. Smaller veins developed and detoured around the larger clogged ones. Time will tell how much things will improve. Amazing how God engineered our bodies.
His "tummy" area has been hurting the last couple of days. A sonogram was done. It appears that his liver is enlarged, possibly caused by the TPN (IV nutrition). They expect this will take care of itself in a short amount of time. He is no longer on TPN and hasn't been for about a week. He is no longer on steroids and they have taken him off everything else except one last antibiotic which will end 7/24 and of course the feeding tube until he eats on his own again.
Please continue to pray for permanent healing and that the pain in his tummy will end soon...and praise for the miracles large and small.
Gratefully,
The Days
HUGE PRAISE!!!
As Profoundly as we walked down into the valley.....we are as profoundly walking up to the mountain tops! Over the week end Cody began speaking, moving his limbs and digits. As dumbfounded as the doctors were at the loss of these things, they are as dumbfounded that they are returning....in a very joyful way. God is answering our prayers of miracles. Thank you for faithfully praying.
I can't begin tell you how excited we are with this turn of events. On Friday..he was trying to form words...they just weren't coming out quite yet. Sunday, when Nana and Poppi were visiting he was able to point to his eye, cross his arms and point at Poppi (Poppi's favorite way to say I love you to Cody) then he smiled a big smile. He spoke a few words. I then asked him if we should call daddy. He shook his head yes. Called Dave and told him someone wanted to talk to him. I held the phone to Cody's ear and he said "hi daddy" the sweetest words ever! (I was already savoring his first hello)
They spoke for a bit.. Cody ended the conversation with "I love you daddy". Our next call was to grandma and grandpa Lienemann..they spoke for a bit. He was totally cognizant, just a little shaky.There are other things Cody is able to do that he wasn't able to, however, he would be upset with me if I shared those, so I'll let your imagination put it together. He has continually improved a little each day since then. He started back with occupational and physical therapy today.
He had an angiogram on his brain. It was determined that some veins were clogged due to chemo and radiation treatment. Smaller veins developed and detoured around the larger clogged ones. Time will tell how much things will improve. Amazing how God engineered our bodies.
His "tummy" area has been hurting the last couple of days. A sonogram was done. It appears that his liver is enlarged, possibly caused by the TPN (IV nutrition). They expect this will take care of itself in a short amount of time. He is no longer on TPN and hasn't been for about a week. He is no longer on steroids and they have taken him off everything else except one last antibiotic which will end 7/24 and of course the feeding tube until he eats on his own again.
Please continue to pray for permanent healing and that the pain in his tummy will end soon...and praise for the miracles large and small.
Gratefully,
The Days
Saturday, July 11, 2009
This made Cody smile......
Dear Family and Friends,
Cody has made some small improvements...huge to us. He can nod yes or no and he is awake more and his eyes follow us around. He squeezed my hand. Just as he squeezed my hand, the doctor walked in. I told him about it so he had Cody squeeze his hand. He was so excited he whooped and jumped up and down. This made Cody smile.......this sent joy to every fiber of my body as this was the first smile we had seen in a while. So now we can communicate!! Thank you God for your miracles!!
Last week was another roller coaster ride as we were initially were told that his condition was necrosis (dead cells - little or no chance of cells recovering) not vasculitis (inflammation and blockage). Later the same day, the neurosurgeon had a different opinion and had a angiogram done on Cody's brain to see where the blockage was. The results showed us that, as in some stroke patients (he did not have a stroke), little veins develop that detour and forge around the blockage. (God's work: pretty incredible to think about how our bodies have the ability to do that) They believe the blockage to be treatment related. This is what appears is going on with Cody (vasulistis)....which is good news as there is potential of healing some or all of the affected areas with time. The results of his improvement in the last couple of days means to us and the doctors that this diagnosis is on the right track.
We are so very grateful and continue to have complete faith that he will have major healing. Thank you for your continued prayers and faith.
The Days
Cody has made some small improvements...huge to us. He can nod yes or no and he is awake more and his eyes follow us around. He squeezed my hand. Just as he squeezed my hand, the doctor walked in. I told him about it so he had Cody squeeze his hand. He was so excited he whooped and jumped up and down. This made Cody smile.......this sent joy to every fiber of my body as this was the first smile we had seen in a while. So now we can communicate!! Thank you God for your miracles!!
Last week was another roller coaster ride as we were initially were told that his condition was necrosis (dead cells - little or no chance of cells recovering) not vasculitis (inflammation and blockage). Later the same day, the neurosurgeon had a different opinion and had a angiogram done on Cody's brain to see where the blockage was. The results showed us that, as in some stroke patients (he did not have a stroke), little veins develop that detour and forge around the blockage. (God's work: pretty incredible to think about how our bodies have the ability to do that) They believe the blockage to be treatment related. This is what appears is going on with Cody (vasulistis)....which is good news as there is potential of healing some or all of the affected areas with time. The results of his improvement in the last couple of days means to us and the doctors that this diagnosis is on the right track.
We are so very grateful and continue to have complete faith that he will have major healing. Thank you for your continued prayers and faith.
The Days
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