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
Wednesday, July 08, 2009
Fighting for Cody's mind and body's restoration
Dear Family and Friends,
There are no words to fully describe our emotions to the events of the past week and a half. We have cried from the depths of our souls.... and have been blessed with renewed strength and peace. Just when we think we have gone through the worst of this....there seems to be something new and even more profound around the corner. We went from fighting cancer to fighting to get Cody's mind and body restored.
June 27, Cody, all of the sudden was unable to talk. What did come out of his mouth was garbled. He was trying to communicate, but could not. Within a couple of days, he could not talk at all. We have had a CAT scan, then a couple of MRI's to check neurologically what the problem might be. Nothing on the tests give us answers as to the cause.... he had some fluids on his brain and there is some inflammation in the veins in his brain....but they do not know why. The inflammation is not in an area of the brain that would normally affect speech.
The neurosurgeon put a shunt in to alleviate any fluid pressure thinking this could resolve the problem....to give it a couple of days.(that was done 7/3) There was no change. All of the doctors are stumped. A neurologist, neurosurgeon, Oncologist's, Infection Disease Doctor are all scratching there heads. There is no immediate answer. They gave him steroids to minimize the inflammation and antibiotics to ward of any potential infections and decreased pain medication considerably as to not mask anything neurological. Because he had no improvement, it was decided to do a biopsy of brain tissue to expedite answers to the cause so it could be treated more effectively more quickly. That was done 7/7. Surgery went well. It appears there are no tumors in his brain. Thankful for that. They will test for cancer cells..so we pray there are none.
As of this afternoon there were no positive cultures of bacteria or infections on his brain. However, some culture testing takes days, some take weeks. They are testing everything under the sun. In the process of elimination, knowing what it isn't, we can also eliminate some of the drugs.
The doctors spoke of a similar case. A patient was in this state for 2 months, then all of the sudden regained what was lost. That is hopeful information....so we will hang on to that. We will also hang on to God's miracles...and that Cody is a fighter.
All of his vital signs and counts (blood, platelet etc.) are good. He looks good..........when he opens his eyes, we can see him in there.....he hears us.....sometimes he gives us a glimmer of a response We read to him, include him in conversations, play soothing music, exercise his arms and legs, massage his body (he seems to like that a lot), allow only positive attitudes and positive things to be said around him. He listens and responds to exercising his body....so like I said, he is there...things go in, things just don't go out.
Will update you with progress. Thank you for your fervent prayers for complete restoration of Cody's body and mind.
The Days
There are no words to fully describe our emotions to the events of the past week and a half. We have cried from the depths of our souls.... and have been blessed with renewed strength and peace. Just when we think we have gone through the worst of this....there seems to be something new and even more profound around the corner. We went from fighting cancer to fighting to get Cody's mind and body restored.
June 27, Cody, all of the sudden was unable to talk. What did come out of his mouth was garbled. He was trying to communicate, but could not. Within a couple of days, he could not talk at all. We have had a CAT scan, then a couple of MRI's to check neurologically what the problem might be. Nothing on the tests give us answers as to the cause.... he had some fluids on his brain and there is some inflammation in the veins in his brain....but they do not know why. The inflammation is not in an area of the brain that would normally affect speech.
The neurosurgeon put a shunt in to alleviate any fluid pressure thinking this could resolve the problem....to give it a couple of days.(that was done 7/3) There was no change. All of the doctors are stumped. A neurologist, neurosurgeon, Oncologist's, Infection Disease Doctor are all scratching there heads. There is no immediate answer. They gave him steroids to minimize the inflammation and antibiotics to ward of any potential infections and decreased pain medication considerably as to not mask anything neurological. Because he had no improvement, it was decided to do a biopsy of brain tissue to expedite answers to the cause so it could be treated more effectively more quickly. That was done 7/7. Surgery went well. It appears there are no tumors in his brain. Thankful for that. They will test for cancer cells..so we pray there are none.
As of this afternoon there were no positive cultures of bacteria or infections on his brain. However, some culture testing takes days, some take weeks. They are testing everything under the sun. In the process of elimination, knowing what it isn't, we can also eliminate some of the drugs.
The doctors spoke of a similar case. A patient was in this state for 2 months, then all of the sudden regained what was lost. That is hopeful information....so we will hang on to that. We will also hang on to God's miracles...and that Cody is a fighter.
All of his vital signs and counts (blood, platelet etc.) are good. He looks good..........when he opens his eyes, we can see him in there.....he hears us.....sometimes he gives us a glimmer of a response We read to him, include him in conversations, play soothing music, exercise his arms and legs, massage his body (he seems to like that a lot), allow only positive attitudes and positive things to be said around him. He listens and responds to exercising his body....so like I said, he is there...things go in, things just don't go out.
Will update you with progress. Thank you for your fervent prayers for complete restoration of Cody's body and mind.
The Days
Wednesday, July 01, 2009
Surgery went well
Quick update.
Surgery went well. We have seen a little improvement. The neurosurgeon said it could be 3 - 4 days to see how much he will improve. We are praying for it all.....restoration of all of his mental and physical functions.
We are at PICU and will go back down to the OICU floor today.....we will be happy to be in our familiar surroundings.
Thank you for hanging in there with us. This has been the toughest phase yet.
In His Hands,
The Days
PS a mutual friend spoke with Dave this afternoon and so far Cody hasn't responded well, PLEASE KEEP PRAYING
Monday, June 29, 2009
Quick update from yesterday....
Dear Family and Friends,
Quick update from yesterday....
We did not have surgery this morning...it is now scheduled for Tuesday morning at 7:00-7:30 am. The plan is to do a permanent shunt so the excess fluids have a place to go in the event fluid build up happens again. Per the doctor, after surgery, he should regain use of all things lost since Friday morning. This should be 45 minute operation. We will spend the night in PICU for observation, then transferred to OICU..then to the regular floor? So not certain how long we will be here....depends on recovery.
Appreciate your prayers,
The Days
Quick update from yesterday....
We did not have surgery this morning...it is now scheduled for Tuesday morning at 7:00-7:30 am. The plan is to do a permanent shunt so the excess fluids have a place to go in the event fluid build up happens again. Per the doctor, after surgery, he should regain use of all things lost since Friday morning. This should be 45 minute operation. We will spend the night in PICU for observation, then transferred to OICU..then to the regular floor? So not certain how long we will be here....depends on recovery.
Appreciate your prayers,
The Days
Sunday, June 28, 2009
Urgent prayer Request
Dear Family and Friends,
Cody is being moved to OICU as I write this. The plan is to do surgery tomorrow morning first thing to look at his brain and possibly put in a shunt to drain the fluid to relieve the pressure. Dr. Muhonen will be doing the surgery. Please pray for wisdom and guidance for the doctor as he works on our precious boy. Please pray for full recovery.
In His Hands,
The Days
Cody is being moved to OICU as I write this. The plan is to do surgery tomorrow morning first thing to look at his brain and possibly put in a shunt to drain the fluid to relieve the pressure. Dr. Muhonen will be doing the surgery. Please pray for wisdom and guidance for the doctor as he works on our precious boy. Please pray for full recovery.
In His Hands,
The Days
4 Steps Forward, 2 Back
Dear Family and Friends,
Darn...we are not home. The roller coaster ride continues. 4 steps forward, 2 back. Cody developed a fever and headaches Wednesday and they have continued since. We have taken a CAT scan of his brain Thursday which showed what appears to be fluid build up on his brain. Today he had an MRI on his brain and spine to get a closer look as to the possible cause.
They are saying that some portions of a couple of vessels his brain appear to be enflamed a bit which may cause brain fluid to block, hence the headaches. The purpose of the MRI was to rule out any new tumors. In fact, they are at bay; there are no new ones and they appear to be, at worst case, the same size, best case a bit smaller than the MRI of a couple of weeks ago. So very grateful for that. We are waiting to have the neurosurgeon have a look at the MRI to get his opinion..which may not happen until Monday. There is some talk of maybe putting in a shunt to help drain the fluid to relieve the pressure. Part of the set backs could be from weaning off so many medications at the same time. ????
Another bit of good news is his white counts are up and total ANC level (a calculation of many things) are up too. Platelets are struggling a bit, but overall things are looking up in that department.
The two steps back is that now that he is off steroids, his appetite has waned quite a bit, his pain is back so had to pump back up his continuous pain medication and he wants to sleep all of the time and this unknown headache thing. We have made some progress with physical and occupational therapy. But, since his pain is back, it is difficult for him to do physical therapy.
Cody continues to have a good sense of humor, when he is awake. Which is a great gift. A small example: Cody's face was all puffy from the steroids..Dave was trying to make light of it by telling Cody he now looks more like Dave. His response? "Not really, I have a skinny bum and tummy." ouch!
This is the update for now and are hopeful that next week will bring more steps forward. You all have been so faithful about keeping us in your prayers......thank you.
The Days
Darn...we are not home. The roller coaster ride continues. 4 steps forward, 2 back. Cody developed a fever and headaches Wednesday and they have continued since. We have taken a CAT scan of his brain Thursday which showed what appears to be fluid build up on his brain. Today he had an MRI on his brain and spine to get a closer look as to the possible cause.
They are saying that some portions of a couple of vessels his brain appear to be enflamed a bit which may cause brain fluid to block, hence the headaches. The purpose of the MRI was to rule out any new tumors. In fact, they are at bay; there are no new ones and they appear to be, at worst case, the same size, best case a bit smaller than the MRI of a couple of weeks ago. So very grateful for that. We are waiting to have the neurosurgeon have a look at the MRI to get his opinion..which may not happen until Monday. There is some talk of maybe putting in a shunt to help drain the fluid to relieve the pressure. Part of the set backs could be from weaning off so many medications at the same time. ????
Another bit of good news is his white counts are up and total ANC level (a calculation of many things) are up too. Platelets are struggling a bit, but overall things are looking up in that department.
The two steps back is that now that he is off steroids, his appetite has waned quite a bit, his pain is back so had to pump back up his continuous pain medication and he wants to sleep all of the time and this unknown headache thing. We have made some progress with physical and occupational therapy. But, since his pain is back, it is difficult for him to do physical therapy.
Cody continues to have a good sense of humor, when he is awake. Which is a great gift. A small example: Cody's face was all puffy from the steroids..Dave was trying to make light of it by telling Cody he now looks more like Dave. His response? "Not really, I have a skinny bum and tummy." ouch!
This is the update for now and are hopeful that next week will bring more steps forward. You all have been so faithful about keeping us in your prayers......thank you.
The Days
Saturday, June 20, 2009
Thank You for Your Constant Prayers
June 19, 2009
Dear Family and Friends,
Since last update we have been blessed with excellent days. Cody has felt better overall, on less pain drugs, hence more coherent, back into physical and occupational therapy and is showing improvement with both his dexterity and overall physical, eating like a horse, has gained weight, no more stomach issues, all of his blood counts have improved, the infection in his broviak line (catheter) has come up negative 3 days in a row so we don’t have to have it replaced, he has a great attitude (cocky as all get out – which is a good thing as it means he’s feeling more like himself J). Wow!!!! Amazing answer to many prayers. So very much to be thankful for. The power of prayer is an amazing thing to watch unfold. Thank you God for listening to the many, many people praying for Cody (and us), thank you all for caring enough and loving us enough to pray us through this.
The current plan is: He will be on IV antibiotics through 6/24..as is protocol to treat infections in broviak lines, last night was his last night to have TPN (IV nutrition in a bag) because he is eat ing so well; we are slowly weaning him from the pain meds with the idea that when we go home he will be off all IV everything having only oral medication and working diligently physical and dexterity recovery.
We look forward to going home...maybe 6/25? Thank you for your diligent prayers.
Love,
The Days
Saturday, June 13, 2009
Please coninue to PRAY for Cody
Dear Family and Friends,
I have been meaning to get an update out sooner. I keep thinking that I will have more information and time "tomorrow"; however, it seems, this roller coaster ride is unending from one day to the next. We have our good days that we celebrate, the bad days we roll with.
I have been meaning to get an update out sooner. I keep thinking that I will have more information and time "tomorrow"; however, it seems, this roller coaster ride is unending from one day to the next. We have our good days that we celebrate, the bad days we roll with.
He got his very last radiation treatment 5/26. He has m ore chemo to go after the last one he received 5/21. Because he had difficulties, again, right after receiving chemo, we have switched to plan C as far as a chemo map goes. From here on out, he will be taking "out patient" oral chemo…..less harsh as he cannot tolerate the original plan(s).
Shortly after the last update, he started having stomach issues. Food would go in and immediately out. So after all of the begging we did to get him to eat, he is now told to he has to be on a liquid diet so his stomach and intestines can heal. How cruel is that? But, he was a sport and savored his red Jell-O and broth. He is now eating regular food and enjoying every bite. The stomach issue seems to be resolved.
Since the last update he has been receiving pain medication through IV and a push button on demand. His feet and legs cause him great pain. The rest of his body is tender too, but nothing like his feet and legs. He has been on pain medication for three weeks, his body has become accustomed to it, and therefore the medication is no longer effective. On Wednesday, they changed his medication to another pain narcotic. On=2 0the switch, they reduced the dosage so he could ease into the new. Hence, we had a couple of very rough days/nights adjusting to the new to get the right combination of continuous and demand doses.
On 6/5 they took an x-ray of his feet; nothing to indicate the source of his pain. On 6/10, he had an MRI of his legs and feet to try to find the cause of the pain…still nothing. He is receiving medication to enhance bone marrow growth, which the doctors believe could be part of the source of pain. The other factor is that radiation continues to do its job for weeks/months after treatment and could cause inflammation, in Cody’s case his spine, where all of the nerves are.
He had an MRI on 6/5 of his brain and spine. Per the doctors, the tumors on his spine are reduced. Yeah! Thank you God!! Some changes on the brain, but they believe it to be treatment related/scar tissue, not tumors. Great news, as it appears the nasty chemo and radiation are doing what it is supposed to do to the tumors.
The most recent hurdle is that he has positive culture in his broviak line (infection). He had a fever for a couple of days, another reason his white counts and platelets were not improving as expected, because his body was busy trying to fight off this new bacteria. We are waiting the results for the most recent cultures, if they continue to come up positive, we will have to replace the broviak line…yet another surgery and challenge.
After chemo 5/21, his body had to fight to get his stomach issue resolved, the pain and now this….using precious white cells that he needs to recover and feel better so he can continue treatment to kill the cancer. At this point we are only a couple days behind the chemo schedule due to the unexpected challenges; his white count s and platelets need to be much higher to continue treatment. So we wait and pray.
At this point, he has limited use of his hands and feet. It is difficult for him to stand on his own, due to the pain and nerve issues. He started physical and occupational therapy last part of May, however, he has not been able to exercise since 6/4 due to pain. On June 4, my birthday, he mustered the strength to walk with his walker way further than we expected. I told him that was the best birthday present ever!! But the following day and since, he was just in too much pain to exercise. We are hoping and praying that with the switch of pain medication, the discontinuation of the medication that enhances bone marrow growth (hopefully in the next couple of days) and the reduction of inflammation (in time) caused by radiation will ease his pain so he can get back on track to recovery. As a parent, the most difficult thing ever is to see your child crying out in pain and not being able to do anything about it….particularly when you can’t even hold him close because it hurts too much…..it brings you to tears
Yesterday as Cody was coping with pain challenges, he yelled “Cancer Sucks!!! I had to agree with him. It really, really does. The first time around was a cake walk compared to this time. He endured the treatment with the sickness and generally feeling lousy first time, which was bad enough...but this time it is that PLUS the many challenges and obtacles thrown at him. He is growing weary of it all. He just wants to feel better and not be in pain. He doesn’t mind so much that his hands and feet aren’t behaving right now...it’s the pain that wears him down.
We feel very blessed to have so many faithful people praying for Cody/us and so many kind and giving people helping us out in this difficult time. We can’t thank you enough for your kindness and continued prayers.
Please pray for:
- Cody’s pain to go away
- Cody’s body to heal
- A big dose of strength, courage and will to keep fighting
- Our continued faithfulness
Humbly,
The Days
Wednesday, May 27, 2009
"that darn seizure!"
Dear Family and Friends,This last 2 weeks has been challenging in many ways. 5/8 at 12:30 am we went to ER as a precautionary measure because Cody seemed confused and disoriented. While there, he got very sick (from chemo the previous day) and his feet started tingling..then the tingling sensation went all the way up his legs. Then his legs hurt to touch and he lost some mobility from the waist down. We had some tests run, we were assigned a walker and a wheel chair, given IV pain narcotics and sent home 5/18. We rested a couple of days then ventured out and strolled Laguna in our new wheels and met friends for lunch. We had a wonderful day with our friends and rediscovering our little town. The following day, he was up for visitors; so friends (old and young) stopped by. The boys (and girl :) - his cousin) had a blast playing with his new gift. Treasured times.My good friend from Washington state was here helping out for a few days. Great diversion for me. We decided to run some quick errands. Dave and Cody were just going to relax at home. While at the bank I got a frantic call from Dave that Cody had a seizure and paramedics were on the way. The decision was made to go to Mission rather than St. Joseph ER due to the desire to get him quickly stabilized and Friday traffic may delay his delivery to ER. Once stabilized, we were transferred to CHOC. While getting him settled in his room, he had another seizure so they transferred us to PICU to be observed more closely.He is now at OICU and doing well. He will likely be transferred to a regular room today or tomorrow and hopefully coming home by Wednesday. Some mobility to his hands and lower torso has returned and each day is better than the previous. We will likely start physical therapy this week and are optimistic that he will regain all of his mobility.Cody absolutely is an inspiration for all of us to heed. I shake my head and thank God. Even with all that is going on, he doesn't complain, smiles and retains his remarkable sense of humor. Friday night, he just said "that darn seizure!" He remains with a great attitude (thank you for your prayers). We have a couple of older adult friends that were recently diagnosed with different cancers, but having to face radiation and chemo and the "C" word.... they are so inspired by Cody, they are asking him for pointers for strength and courage. Thank you for your continued prayers. Our prayer this week would be that the mobility for everything be regained swiftly and the tumors diminish to nothing and stay away forever.....and praise for gifting us with many family and friends that encourage and support us through this.In His Grip,The Days
Sunday, May 10, 2009
Darn cancer, darn chemo PLEASE PRAY
Dear Family and Friends,
Thursday night, at 11:30 PM, Cody woke up disoriented and confused, so we ended up in ER to check him out. He had radiation on Wednesday and chemo and radiation on Thursday so was worrisome that he was so confused. We were thinking it would be just a short visit, however, while there, he got very sick and lost everything he had, to the point of dry heaving time and time again...causing him much pain in his stomach. At about 6:30 AM we were transferred over to CHOC. Friday afternoon he got a CT scan just to make sure all is OK on his brain. There was nothing on the scan to warrant concern.
Friday he was unable to eat or drink anything. Even water made him sick. He is hooked up to IV for hydration and nutrition. Today he was able to keep little bits of water down...and took a walk in the halls; so this is an improvement we were praying for. The doctors expect him to feel good enough to come back home on Monday. Darn cancer, darn chemo. Is so hard to see him in such pain. We pray 24/7 for his returned health and grateful for every little step forward.
Please pray that the pain in his stomach goes away and his appetite returns quickly.
Thank you for your continued prayers.
The Days
Thursday night, at 11:30 PM, Cody woke up disoriented and confused, so we ended up in ER to check him out. He had radiation on Wednesday and chemo and radiation on Thursday so was worrisome that he was so confused. We were thinking it would be just a short visit, however, while there, he got very sick and lost everything he had, to the point of dry heaving time and time again...causing him much pain in his stomach. At about 6:30 AM we were transferred over to CHOC. Friday afternoon he got a CT scan just to make sure all is OK on his brain. There was nothing on the scan to warrant concern.
Friday he was unable to eat or drink anything. Even water made him sick. He is hooked up to IV for hydration and nutrition. Today he was able to keep little bits of water down...and took a walk in the halls; so this is an improvement we were praying for. The doctors expect him to feel good enough to come back home on Monday. Darn cancer, darn chemo. Is so hard to see him in such pain. We pray 24/7 for his returned health and grateful for every little step forward.
Please pray that the pain in his stomach goes away and his appetite returns quickly.
Thank you for your continued prayers.
The Days
Thursday, May 07, 2009
Cody started radiation on Wednesday
Dear Family and Friends,
Cody started radiation today. He will be getting radiation treatments tomorrow and Friday; then Monday - Friday for the next 2 weeks. In addition to tomorrows radiation, he will also get chemo and chemo again in three weeks....if he tolerates it. This is the plan, but is subject to change. In a month, he will have another MRI to check the status of the job chemo and radiation is doing
He has made great strides in improvement since his month stay at the hospital. This new treatment will likely knock him down again. We are taking every precaution to nip it in the bud, before it becomes a problem. This evening he was very tired...but can still manage a smile.
Please pray that he does well with this new treatment and the treatment does what it is supposed to do....kick the cancer out; and that he can eat and drink and his stomach won't hurt.
Thank you for your very needed and continued prayers,
The Days
Cody started radiation today. He will be getting radiation treatments tomorrow and Friday; then Monday - Friday for the next 2 weeks. In addition to tomorrows radiation, he will also get chemo and chemo again in three weeks....if he tolerates it. This is the plan, but is subject to change. In a month, he will have another MRI to check the status of the job chemo and radiation is doing
He has made great strides in improvement since his month stay at the hospital. This new treatment will likely knock him down again. We are taking every precaution to nip it in the bud, before it becomes a problem. This evening he was very tired...but can still manage a smile.
Please pray that he does well with this new treatment and the treatment does what it is supposed to do....kick the cancer out; and that he can eat and drink and his stomach won't hurt.
Thank you for your very needed and continued prayers,
The Days
Monday, May 04, 2009
We Are Finally Home!
Dear Family and Friends,
We are finally home! Cody did well transitioning home and was happy to be in his own bed....me too. We are all in good spirits and look forward to spending time together .
Before we left the hospital, we met with the radiologist to go over our new plan. He will get 14 treatments of radiation to his entire spine over the next 3 weeks. On Monday we go to get "fitted" for his mask that is required to bolt his head down to the table while they radiate...they want to be right on target; in addition, he will get the positioning "tattoos" . He is not looking forward to this but is psyching himself up. We may also start chemo next week pending his white cell and platelet counts. The chemo plan is to be all out patient and is not as potent as the first round. The sooner we get started the better as to not give the tumors a chance.
Our prayer would be that he get a ferocious appetite, that the tumors disappear; never to return and his health completely restored. As a friend recently said, "Cody is my hero and inspiration", he is ours too.
Thank you for your continued prayers. It is awesome to see God at work, not only in our lives, but in many lives that Cody has touched in some very profound ways.
All His,
The Days
We are finally home! Cody did well transitioning home and was happy to be in his own bed....me too. We are all in good spirits and look forward to spending time together .
Before we left the hospital, we met with the radiologist to go over our new plan. He will get 14 treatments of radiation to his entire spine over the next 3 weeks. On Monday we go to get "fitted" for his mask that is required to bolt his head down to the table while they radiate...they want to be right on target; in addition, he will get the positioning "tattoos" . He is not looking forward to this but is psyching himself up. We may also start chemo next week pending his white cell and platelet counts. The chemo plan is to be all out patient and is not as potent as the first round. The sooner we get started the better as to not give the tumors a chance.
Our prayer would be that he get a ferocious appetite, that the tumors disappear; never to return and his health completely restored. As a friend recently said, "Cody is my hero and inspiration", he is ours too.
Thank you for your continued prayers. It is awesome to see God at work, not only in our lives, but in many lives that Cody has touched in some very profound ways.
All His,
The Days
Friday, May 01, 2009
donating blood and/or platelets
Dear Family and Friends,
More Praise...
The good news in a nut shell is that things are looking up and we may be able to come home in a couple of days. Counts have improved, tumors are smaller, no more rash, he is eating and walking around, his sinus infection is cleared, he has gained his weight back and we now know the mystery "thing" on his lungs is a yeast infection. The infection is being treated with antibiotics and should be gone in 4 - 6 weeks. We should have our new treatment plan/map in the next day or two as the original chemo was just too much for his body to handle, hence all of the problems he encountered and almost daily transfusions of blood and/or platelets AND Cody's spirits are still good even after all he has been through in the last month. God gave us an amazing boy.
Since Friday, many things have come about. He developed a rash over his entire body, which could be a number of things. The doctors eliminated or changed some of the many drugs etc. he is/was on to try and determine the culprit. After 2 days that all cleared up, cause still unknown. Could have been the transfusions.
Saturday and Sunday they harvested his stem cells. He had to have an additional catheter placed in his groin area for the procedure, which was uncomfortable, but he was a trooper. After 2 days of harvesting (5 hours each day that he had to be still) it was determined that we were not collecting enough to warrant additional days to harvest this time around so will have to do this again at the end of his next cycle of chemo. Argh... After the first day of harvesting, we were told that he had a good harvest, which we were excited about, however, the person calculating, miscalculated..so this information was very disappointing as we only got 4% of what we needed rather than the 73% we thought we had.
Three days ago they started him on marinol (a marijuana derivative) to help with his appetite and nausea. It was doing a good job as he ate in a big way. The next day they doubled the dose. Oops...too much. He was a lethargic lump for two days and was seeing and hearing things that weren't really there. Needless to say, they reduced the dose immediately.
Several people have inquired about donating blood and/or platelets. I spoke with the blood bank about designating donations to Cody. They recommended calling first to do a phone interview, then setting up a time to come in. The phone number is
714-532-8339
. They are located across the street from CHOC at: 505 S. Main St. Suite 185, Orange, CA. 92868-3874. Donating blood takes about an hour and platelets take about 2 1/2 hours.
It is overwhelming to think about how many people are praying for Cody...from all corners of the world. We so appreciate your prayers,love, generosity and kindness.
Thank you so very much,
The Days
More Praise...
The good news in a nut shell is that things are looking up and we may be able to come home in a couple of days. Counts have improved, tumors are smaller, no more rash, he is eating and walking around, his sinus infection is cleared, he has gained his weight back and we now know the mystery "thing" on his lungs is a yeast infection. The infection is being treated with antibiotics and should be gone in 4 - 6 weeks. We should have our new treatment plan/map in the next day or two as the original chemo was just too much for his body to handle, hence all of the problems he encountered and almost daily transfusions of blood and/or platelets AND Cody's spirits are still good even after all he has been through in the last month. God gave us an amazing boy.
Since Friday, many things have come about. He developed a rash over his entire body, which could be a number of things. The doctors eliminated or changed some of the many drugs etc. he is/was on to try and determine the culprit. After 2 days that all cleared up, cause still unknown. Could have been the transfusions.
Saturday and Sunday they harvested his stem cells. He had to have an additional catheter placed in his groin area for the procedure, which was uncomfortable, but he was a trooper. After 2 days of harvesting (5 hours each day that he had to be still) it was determined that we were not collecting enough to warrant additional days to harvest this time around so will have to do this again at the end of his next cycle of chemo. Argh... After the first day of harvesting, we were told that he had a good harvest, which we were excited about, however, the person calculating, miscalculated..so this information was very disappointing as we only got 4% of what we needed rather than the 73% we thought we had.
Three days ago they started him on marinol (a marijuana derivative) to help with his appetite and nausea. It was doing a good job as he ate in a big way. The next day they doubled the dose. Oops...too much. He was a lethargic lump for two days and was seeing and hearing things that weren't really there. Needless to say, they reduced the dose immediately.
Several people have inquired about donating blood and/or platelets. I spoke with the blood bank about designating donations to Cody. They recommended calling first to do a phone interview, then setting up a time to come in. The phone number is
714-532-8339. They are located across the street from CHOC at: 505 S. Main St. Suite 185, Orange, CA. 92868-3874. Donating blood takes about an hour and platelets take about 2 1/2 hours.It is overwhelming to think about how many people are praying for Cody...from all corners of the world. We so appreciate your prayers,love, generosity and kindness.
Thank you so very much,
The Days
Sunday, April 26, 2009
Praise! Praise! Praise!
Dear Family and Friends,
Praise! Praise! Praise! Cody had a great day today. He was up and about and he actually ate some food and kept it down; His white cells and platelet counts are up. In addition, his MRI showed that his tumors are smaller! Huge victories on the mountain of challenges.
Amidst the challenges added to the cancer treatment, he remains with a good and spunky spirit. With all of these trials, he has developed a great sense of humor. A very needed and joyful bright light. He does not complain at all. Since March 23, the start of the recurrence, he has had only 2 small melt downs...and he apologized after. He is amazing.
This week he had a 2 hour MRI, which normally is a breeze for him, however, this time around, he still had the packing in his nose from the sinusitis surgery so breathing with this apparatus clamping his head down was difficult so the experience was over the top. This one traumatized him....if he wasn't claustrophobic, he is now. He did say, for the next one he wants to be sedated.
The days start running together so I don't remember which day he had what done to..but he had a CT scan of his sinus area one day, a CT scan of his lungs another, the MRI Tuesday, then a biopsy of his lungs today.(He is beginning to glow in the dark).Saturday morning he will have a procedure to install a catheter in his groin area so they can start harvesting his stem cells. He is not looking forward to this. After the catheter is installed, they will start the harvesting, which will take any where from 1 - 6 days. They run the machine for about 4 hours a day to collect until they have what they need, then freeze them. On the last 3 cycles they give them back to him "to recover his bone marrow".
In the next couple of days we should have the results from the biopsy to determine what is growing on his lungs. We do know that it is not a tumor. Next week we should also get a new road map of his treatment as the original one is too much for him to handle. His immune system was so compromised with the first cycle that he got a strep infection in his blood, sinusitis, the mystery thing on his lungs and an unexplainable rash over his entire body. His strength and tenacity are beyond comprehension.
Several people have inquired about blood and platelet donations. We got the paper work going and Monday I should have the contact information available and will send in the next update.
Thank you so much for your continued prayers for peace, strength and God's presence for the three of us. He is listening.
All His,
The Days
Praise! Praise! Praise! Cody had a great day today. He was up and about and he actually ate some food and kept it down; His white cells and platelet counts are up. In addition, his MRI showed that his tumors are smaller! Huge victories on the mountain of challenges.
Amidst the challenges added to the cancer treatment, he remains with a good and spunky spirit. With all of these trials, he has developed a great sense of humor. A very needed and joyful bright light. He does not complain at all. Since March 23, the start of the recurrence, he has had only 2 small melt downs...and he apologized after. He is amazing.
This week he had a 2 hour MRI, which normally is a breeze for him, however, this time around, he still had the packing in his nose from the sinusitis surgery so breathing with this apparatus clamping his head down was difficult so the experience was over the top. This one traumatized him....if he wasn't claustrophobic, he is now. He did say, for the next one he wants to be sedated.
The days start running together so I don't remember which day he had what done to..but he had a CT scan of his sinus area one day, a CT scan of his lungs another, the MRI Tuesday, then a biopsy of his lungs today.(He is beginning to glow in the dark).Saturday morning he will have a procedure to install a catheter in his groin area so they can start harvesting his stem cells. He is not looking forward to this. After the catheter is installed, they will start the harvesting, which will take any where from 1 - 6 days. They run the machine for about 4 hours a day to collect until they have what they need, then freeze them. On the last 3 cycles they give them back to him "to recover his bone marrow".
In the next couple of days we should have the results from the biopsy to determine what is growing on his lungs. We do know that it is not a tumor. Next week we should also get a new road map of his treatment as the original one is too much for him to handle. His immune system was so compromised with the first cycle that he got a strep infection in his blood, sinusitis, the mystery thing on his lungs and an unexplainable rash over his entire body. His strength and tenacity are beyond comprehension.
Several people have inquired about blood and platelet donations. We got the paper work going and Monday I should have the contact information available and will send in the next update.
Thank you so much for your continued prayers for peace, strength and God's presence for the three of us. He is listening.
All His,
The Days
Friday, April 24, 2009
Cody's Cancer has returned
Dear Family and Friends,
We are at CHOC today. This morning Cody had a broviak (spelling?) access line installed and is in GREAT spirits. He amazes us with his beautiful attitude. He is speeding down the hall ways with his IV pole already. Dave, Poppi and I ducked out for a quick lunch. When we got back, he was in the room next door encouraging a couple of guys to join him in the play room. He did manage to get them out of bed and rolling down the hall ...was awesome to see his positive spirit in action. We are all at peace and have suited up for the battle.
He is scheduled to have bone marrow tested tomorrow and will more than likely start chemo on Thursday.
Appreciate your prayers.
Dallas
We are at CHOC today. This morning Cody had a broviak (spelling?) access line installed and is in GREAT spirits. He amazes us with his beautiful attitude. He is speeding down the hall ways with his IV pole already. Dave, Poppi and I ducked out for a quick lunch. When we got back, he was in the room next door encouraging a couple of guys to join him in the play room. He did manage to get them out of bed and rolling down the hall ...was awesome to see his positive spirit in action. We are all at peace and have suited up for the battle.
He is scheduled to have bone marrow tested tomorrow and will more than likely start chemo on Thursday.
Appreciate your prayers.
Dallas
Monday, April 20, 2009
Fridays surgery went well
Fridays surgery went well. (sinusitis). One side was almost completely blocked...it is now clear...except for the gauze still stuck up his nose. We are hoping that comes out today. He is having fewer fevers and his counts have improved slightly since last week. This is a good thing as it appears he is getting over what ever it is he had (still don't know for sure..only know that it MAY be some sort of pneumonia, but not conclusive as all biopsy results are not in. But so far, all things have come up negative).
We will be having another MRI some time on Wednesday....then meeting with the team on Thursday. My prayer would be that the MRI is clear and will leave the doctors scratching their heads in disbelief.
They are also looking at starting to harvest his stem cells this week. This is brief, but wanted to give you an update before I loose my Internet connection.
Thank you for your continuous prayers,
The Days
We will be having another MRI some time on Wednesday....then meeting with the team on Thursday. My prayer would be that the MRI is clear and will leave the doctors scratching their heads in disbelief.
They are also looking at starting to harvest his stem cells this week. This is brief, but wanted to give you an update before I loose my Internet connection.
Thank you for your continuous prayers,
The Days
Friday, April 17, 2009
Quick prayer request
In a few minutes, (about 6:00 PM California time) Cody will going to do yet another exploratory "treatment" to try and figure out why his white cells aren't coming up. We had a CT scan from the neck down Wednesday, and another CT scan from the neck up last night. We have met with and infectious disease doctor yesterday and an ENT doctor today. It appears he has sinusitis. His sinuses are blocked, lymph nodes swollen and spots on his lungs. The spots are being treated as if it were fungus. (they aren't sure what it is...a fungus, bacteria or virus, but are pretty confident it is not a tumor) The two may be related....the lung and sinus issues.
The treatment tonight is to retrieve what is in his sinuses for a biopsy, while there, clean it out a bit. The purpose is to pinpoint what is robbing him of his white cells and where it started so it can be treated appropriately and swiftly. They feel that once they know, they can treat it and his white cells will start coming back. We re pretty much at a stand still with cancer treatment until his cells start coming back.
So...it appears, we will be here for awhile..at least another couple of weeks....which is OK. I'd rather be here in his condition, and so would he.
Pray for wisdom for the doctors in treating this mystery cell robber swiftly so Cody's white cells can come back up and we can get on with the primary battle. In spite of all that is going on....Cody remains in good spirits, albeit, tired .
Thank you for your continued prayers.
The Days
The treatment tonight is to retrieve what is in his sinuses for a biopsy, while there, clean it out a bit. The purpose is to pinpoint what is robbing him of his white cells and where it started so it can be treated appropriately and swiftly. They feel that once they know, they can treat it and his white cells will start coming back. We re pretty much at a stand still with cancer treatment until his cells start coming back.
So...it appears, we will be here for awhile..at least another couple of weeks....which is OK. I'd rather be here in his condition, and so would he.
Pray for wisdom for the doctors in treating this mystery cell robber swiftly so Cody's white cells can come back up and we can get on with the primary battle. In spite of all that is going on....Cody remains in good spirits, albeit, tired .
Thank you for your continued prayers.
The Days
Tuesday, April 14, 2009
A visit from Mickey Mouse
Quick update on Cody. We have been here at CHOC since 4/4 and will likely remain here for another week or two. This is actually the best place for Cody right now as we have available, everything we need immediately. Cody is actually OK with staying in the hospital as long as needed. He has an amazing attitude. However, today he did have some complaints about drinking the 2 liters of contrast so we could do a CT scan.He never complains, so he when he does, he is given a ton of grace and space to do so.
In the last week, he has received, almost daily, either platelet or blood transfusions. His white blood count and platelets remain low, even after the transfusions. He also has had fevers as high as 103 in the last few days. Sometime this afternoon, he will get a CT scan to check for any viruses or bacteria that might be robbing him of his fighting cells. Even with these challenges, his attitude is amazing.
We were supposed to start cycle 2 of chemo today, but because his counts are low and we still need to harvest stem cells from him after counts go up, chemo has been postponed until those things happen.
Even though he is a little old to appreciate Mickey Mouse, Mickey did bring a smile to his face when he visited yesterday. CHOC does a great job of keeping the children distracted.
Will give you updated info re: scan as it is available. Please pray for white cells and platelets to go up and that the scan will reveal what is robbing his cells so the doctors can treat accordingly and immediately.
Thank you for your continue prayers.
In His Love,
Dallas
In the last week, he has received, almost daily, either platelet or blood transfusions. His white blood count and platelets remain low, even after the transfusions. He also has had fevers as high as 103 in the last few days. Sometime this afternoon, he will get a CT scan to check for any viruses or bacteria that might be robbing him of his fighting cells. Even with these challenges, his attitude is amazing.
We were supposed to start cycle 2 of chemo today, but because his counts are low and we still need to harvest stem cells from him after counts go up, chemo has been postponed until those things happen.
Even though he is a little old to appreciate Mickey Mouse, Mickey did bring a smile to his face when he visited yesterday. CHOC does a great job of keeping the children distracted.
Will give you updated info re: scan as it is available. Please pray for white cells and platelets to go up and that the scan will reveal what is robbing his cells so the doctors can treat accordingly and immediately.
Thank you for your continue prayers.
In His Love,
Dallas
Thursday, April 09, 2009
The start of a roller coaster ridenew
Dear Family and Friends,
Well, it has been a bit of a roller coaster ride this first couple of weeks, but today is a good day. Even though we have walked this road before, it still has lots of pot holes and ruts.
The first week we had to psych up and suit up to prepare for this battle. I now think I know what a soldier going to war, having once been there, must feel like just prior to deploying. The first time, we only anticipate what it must be like; the second time, we know what lies ahead, turning our stomachs venturing into the known unknown. I don't know how anyone gets through this type of thing without God.
Last week was rough, we were at the clinic just about every day for either hydration or blood and platelet transfusions...the chemo kicked in...in a big way. It is hard to see the havoc it plays on Cody's body. The good....the great thing is amid the pain, cramps and vomiting Cody still is gracious and his humor stays intact. He has never had pity on himself or questioned God...he is an amazing young man and we are so very blessed to have him.
Saturday night at 2:30 AM he got a fever of 101.5, which is an automatic do not pass GO, go directly to ER....which we did and have been here since. By the time we got checked into CHOC it was 5:30 AM. Long night for both of us. It was determined that he had positive strep bacteria in his blood stream, nothing caught from anyone, just his white cells were -0- and we have all kinds of bacteria in our bodies just looking for an opportunity to blossom...which it did. This is the 3rd day of negative cultures. They typically want him to have 5 days of being clear before being released so we have a couple more days to go. However, depending on his white cell count in the next couple of days, they will start harvesting his stem cells to freeze and return to him for the last 3 cycles of chemo. This process takes 2- 6 days
Yesterday his hair started falling out. So "Child Life" (they assist the children so their stay will be more pleasant) had a hair stylist come in. At Cody's request he got a mohawk. He wanted to dye it red or black....but under the circumstances (and because I couldn't find any colored wax at CVS) we spiked his mohawk.....we had some good laughs. It should be good for another day or two before it all falls out.
For those of you that are praying , thank you for your continued prayers...for those that are not.....now is a good time. :)
Blessings,
Dallas
Well, it has been a bit of a roller coaster ride this first couple of weeks, but today is a good day. Even though we have walked this road before, it still has lots of pot holes and ruts.
The first week we had to psych up and suit up to prepare for this battle. I now think I know what a soldier going to war, having once been there, must feel like just prior to deploying. The first time, we only anticipate what it must be like; the second time, we know what lies ahead, turning our stomachs venturing into the known unknown. I don't know how anyone gets through this type of thing without God.
Last week was rough, we were at the clinic just about every day for either hydration or blood and platelet transfusions...the chemo kicked in...in a big way. It is hard to see the havoc it plays on Cody's body. The good....the great thing is amid the pain, cramps and vomiting Cody still is gracious and his humor stays intact. He has never had pity on himself or questioned God...he is an amazing young man and we are so very blessed to have him.
Saturday night at 2:30 AM he got a fever of 101.5, which is an automatic do not pass GO, go directly to ER....which we did and have been here since. By the time we got checked into CHOC it was 5:30 AM. Long night for both of us. It was determined that he had positive strep bacteria in his blood stream, nothing caught from anyone, just his white cells were -0- and we have all kinds of bacteria in our bodies just looking for an opportunity to blossom...which it did. This is the 3rd day of negative cultures. They typically want him to have 5 days of being clear before being released so we have a couple more days to go. However, depending on his white cell count in the next couple of days, they will start harvesting his stem cells to freeze and return to him for the last 3 cycles of chemo. This process takes 2- 6 days
Yesterday his hair started falling out. So "Child Life" (they assist the children so their stay will be more pleasant) had a hair stylist come in. At Cody's request he got a mohawk. He wanted to dye it red or black....but under the circumstances (and because I couldn't find any colored wax at CVS) we spiked his mohawk.....we had some good laughs. It should be good for another day or two before it all falls out.
For those of you that are praying , thank you for your continued prayers...for those that are not.....now is a good time. :)
Blessings,
Dallas
Monday, March 23, 2009
Day Family Alert -- Prayer Needed
David Day had a flight to Oaxaca this last week. Cody who had been declared free of cancer went into the hospital because of an infection. His last MRI had been only two months earlier and shown completely cancer free. Dave chose to stay home with his wife Dallas and Cody. Here is an update from his office of Growers First Coffee.
Dear Growers First Board of Directors, Staff and Partners:
I’m writing to you at the request of Dave and Dallas Day, who need our love, support and prayers more than ever. Their son, Cody, had an MRI on Friday that revealed a number of spots along his spine. He has been admitted to CHOC Hospital, and Dave and Dallas have met this afternoon with Cody’s team of doctors. The situation is serious but hopeful. The doctors have determined that surgery and radiation are not an option and plan to treat Cody with a very hard hitting form of Chemotherapy that will begin this week.
Please be encouraged to pass this email along to others who love the Day family. As more information is available, we’ll be sure to update you. May we all keep this beloved family in the forefront of our minds and hearts, and often mentioned in conversations with our Lor
Dear Growers First Board of Directors, Staff and Partners:
I’m writing to you at the request of Dave and Dallas Day, who need our love, support and prayers more than ever. Their son, Cody, had an MRI on Friday that revealed a number of spots along his spine. He has been admitted to CHOC Hospital, and Dave and Dallas have met this afternoon with Cody’s team of doctors. The situation is serious but hopeful. The doctors have determined that surgery and radiation are not an option and plan to treat Cody with a very hard hitting form of Chemotherapy that will begin this week.
Please be encouraged to pass this email along to others who love the Day family. As more information is available, we’ll be sure to update you. May we all keep this beloved family in the forefront of our minds and hearts, and often mentioned in conversations with our Lor
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