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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:
- 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
Thank you for your continued, faithful prayers.
The Days
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
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
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
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
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