a little bit of taking charge.....
It has been a couple of days since I have written.
My body is very mad at me.
The effects of years worth of stress, combined with the present situation....has piled on top of me.
I am feeling the weight......
I will come out on the other side I know....but I am slow to move right now.
My boys are doing wonderful.....really.
This "honeymoon" phase has showed us a Parklen that we have not seen in years.
His smiles cannot be stopped, his giggles cannot be silenced.
He keeps his blinds that lead into the hallway, open.
Each person that passes by is greeted with a huge smile, wave and kisses blown.
He brightens everyones day.
The people who have known him for years all talk about how sad it will be to watch him feel sick again.
I agree.
Parklen decided to take charge of what he could......
he did not want to wait for his hair to fall out.
He shaved his head!
Its always good to have control of something in the midst of the uncontrollable.
His white blood counts dropped by half overnight.....
It means that the time of zero counts are near.
The promised days of misery are creeping in.
I have spoken with nurses that have witnessed kids breeze through the process, with just a little bit of sickness......this is my hope for Parklen.
I know that the process is very confusing to some, I receive a lot of questions regarding it...
I will try and explain the basics.
The chemo that he received last week is just now beginning to do its job...this will mean lowered blood counts, no immunity, hair loss, nausea, vomiting, fatigue.........
The cells that were given to Parklen from Paysen will take time to "engraft"
It could be weeks before he shows sign of engraftment.
The time between the transplant and the engraftment is critical.
This is when his body will be completely helpless against any germs, illness....anything.
This is when he will have to remain in the hospital.
This time varies for every child.
Some are in the hospital for only 6 weeks, this is considered the minimum.
Some are inpatient for a year.
The discharge from the hospital is decided according to his blood tests.
Once his counts start to go up from the zero point, once they reach an acceptable number he will be released.
Once allowed to leave the hospital he will transition to the apartment. This is where they maintain a "safe clean" environment.
This time frame is also very dependant on Parklen himself....its different for each kid.
During his time at the apartment, he will go into the hospital frequently for blood tests, to receive blood transfusions and any other care needed.
The number of 100 days is given as an estimate. This is the time that he will be most fragile. This is the time when many patients can pass away due to common sickness such as the flu and colds. One hundred days is the very least that we will live in Denver.
Once they deem it safe for Parklen to return to Casper we will head north. The struggle will not end there. Parklen will have to kept away from many things for one to two years.....depending on how he does. He will continue to need isolation. We wont be having company at our home for a very long time. He will not be going in public. He will not be participating in activities or school for as long as need be. If he has to go somewhere he will have to wear a special mask for protection.
The risk of infection will still be high.
The risk of Graft versus Host disease will be high.
The doctors will decide when Parklen is ready to resume regular life.
There is a giant misconception that the transplant is a cure all.....
Parklen may still suffer effects from his previous treatments...
He may also have scarring from his disease that cannot be fixed.
There are many things that may still happen.
Most important to realize, is that we have a very long road ahead....
longer than the 100 days.
Parklen will continue to need your support and prayer.
For many many months to come.
These are the facts.
We are feeling super blessed today.
The smiles of our boys are filling the room.
The joy of their love for one another is such a comfort.
Once Paysen returns to school on Monday he will not be allowed to see Parklen again until he is discharged from the hospital. This will be a hard time for the both of them. He and Devan will come down on weekends to visit but he will have to remain at the apartment.
My two big guys will be leaving in two days.
This pulls at my heart strings.
I love having Devan here.
People who see me notice a difference in my face......I get to share the load.
and no matter who comes to help or the many friends that step in to fill the gaps, Devan is the only other human who truly understands what I feel. What I fear, what I need.
Watching them go will be tough.
Trying to live moment by moment.
Trying to recognize the blessings that we have.
Trying to shine the light that God gives me.
Knowing that the best is yet to be...............
Yesterday was Halloween....and so I will leave you with a vision of our little Honey Bee. Admit it, she makes you happy.
My body is very mad at me.
The effects of years worth of stress, combined with the present situation....has piled on top of me.
I am feeling the weight......
I will come out on the other side I know....but I am slow to move right now.
My boys are doing wonderful.....really.
This "honeymoon" phase has showed us a Parklen that we have not seen in years.
His smiles cannot be stopped, his giggles cannot be silenced.
He keeps his blinds that lead into the hallway, open.
Each person that passes by is greeted with a huge smile, wave and kisses blown.
He brightens everyones day.
The people who have known him for years all talk about how sad it will be to watch him feel sick again.
I agree.
Parklen decided to take charge of what he could......
he did not want to wait for his hair to fall out.
He shaved his head!
Its always good to have control of something in the midst of the uncontrollable.
It means that the time of zero counts are near.
The promised days of misery are creeping in.
I have spoken with nurses that have witnessed kids breeze through the process, with just a little bit of sickness......this is my hope for Parklen.
I know that the process is very confusing to some, I receive a lot of questions regarding it...
I will try and explain the basics.
The chemo that he received last week is just now beginning to do its job...this will mean lowered blood counts, no immunity, hair loss, nausea, vomiting, fatigue.........
The cells that were given to Parklen from Paysen will take time to "engraft"
It could be weeks before he shows sign of engraftment.
The time between the transplant and the engraftment is critical.
This is when his body will be completely helpless against any germs, illness....anything.
This is when he will have to remain in the hospital.
This time varies for every child.
Some are in the hospital for only 6 weeks, this is considered the minimum.
Some are inpatient for a year.
The discharge from the hospital is decided according to his blood tests.
Once his counts start to go up from the zero point, once they reach an acceptable number he will be released.
Once allowed to leave the hospital he will transition to the apartment. This is where they maintain a "safe clean" environment.
This time frame is also very dependant on Parklen himself....its different for each kid.
During his time at the apartment, he will go into the hospital frequently for blood tests, to receive blood transfusions and any other care needed.
The number of 100 days is given as an estimate. This is the time that he will be most fragile. This is the time when many patients can pass away due to common sickness such as the flu and colds. One hundred days is the very least that we will live in Denver.
Once they deem it safe for Parklen to return to Casper we will head north. The struggle will not end there. Parklen will have to kept away from many things for one to two years.....depending on how he does. He will continue to need isolation. We wont be having company at our home for a very long time. He will not be going in public. He will not be participating in activities or school for as long as need be. If he has to go somewhere he will have to wear a special mask for protection.
The risk of infection will still be high.
The risk of Graft versus Host disease will be high.
The doctors will decide when Parklen is ready to resume regular life.
There is a giant misconception that the transplant is a cure all.....
Parklen may still suffer effects from his previous treatments...
He may also have scarring from his disease that cannot be fixed.
There are many things that may still happen.
Most important to realize, is that we have a very long road ahead....
longer than the 100 days.
Parklen will continue to need your support and prayer.
For many many months to come.
These are the facts.
We are feeling super blessed today.
The smiles of our boys are filling the room.
The joy of their love for one another is such a comfort.
Once Paysen returns to school on Monday he will not be allowed to see Parklen again until he is discharged from the hospital. This will be a hard time for the both of them. He and Devan will come down on weekends to visit but he will have to remain at the apartment.
My two big guys will be leaving in two days.
This pulls at my heart strings.
I love having Devan here.
People who see me notice a difference in my face......I get to share the load.
and no matter who comes to help or the many friends that step in to fill the gaps, Devan is the only other human who truly understands what I feel. What I fear, what I need.
Watching them go will be tough.
Trying to live moment by moment.
Trying to recognize the blessings that we have.
Trying to shine the light that God gives me.
Knowing that the best is yet to be...............
Yesterday was Halloween....and so I will leave you with a vision of our little Honey Bee. Admit it, she makes you happy.
Your strength is unbelievable. Your challenge is incomprehensible. God be with you and give you the comfort only He can provide.
ReplyDeleteKerri