{-3}

-
Day -3.

It was a day of highs and lows......

Parklen did better than expected through out the tough drug that finished up today.
He had reactions,
but they were prepared for the worst....
the worst never came.

This evening he received his last dose of actual Chemotherapy.
Ever.
That is a high.
Tomorrow he starts an anti rejection drug.....used to help prepare his body to accept his brother's marrow.

He feels bad.
Sad.
Angry.
Frustrated.
Sick.
Cold.
Hot.
Hungry.
Unable to eat much.

and then he feels...
Happy.
Excited.
Giggly.

He is riding a roller coaster of which he has no control......
and neither do I.

I can only do my best to meet his needs and find him comfort.
Most of the time, my efforts fall short.


He mostly just wants ME.
There is something to be said about being someones everything.....
Just holding him in my arms seem to calm his spirit.

Because of the coming transplant and the hardships of chemo being in the past,
the doctor suggested that I get out of the hospital a few times a day and sometimes overnight....
Can you imagine?
I have spent 5 years with this being my load to carry.....
Five years of rarely leaving his sight....
I have never spent more than a couple nights away from his bed side in that entire time......
and only if he were well taken care of.

His reasoning is sound.
If I run out of gas,
he will not feel comfortable releasing him to me when he is ready to leave the hospital.
It doesn't make it any easier.
There are a few nurses that I trust so much....
enough that I consider them friends......
When one of those nurses are working,
I am able to force myself out of the door....
Handing the baton over to my mother.....
I honestly do not sleep.....
I mostly just worry....
but I will admit that the very change of scenery is enough to refresh me a bit.
I am away tonight....
It was hard to leave Parklen, who did not want me to go....but I had to choose whats best for the long run.
I am here at the apartment with Paysen, Phinlynn and Devan.
Feeling the ever present tug at my heart for my boy who lays in the hospital.......
looking forward to the morning....
to the future....
to health,
to more smiles and less tears.....

Today is Saturday...
Transplant is Tuesday....
The time is drawing near.....

Comments

Post a Comment

Popular posts from this blog

Time

-
Image
It sure has been some time. Time since I sat before this blank page that used to bring me such comfort.  Time since I shared deep feelings.. Time since I opened the curtain into my heart, for all to see. Time ticks by. Ever quickly. They say that time heals all wounds... I think anyone who has suffered a broken heart, knows thats not the truth, Who are they  anyway? Time forms. Like the hands of the potter... moving, moulding, squeezing, pinching. As the clay spins, the potter changes it. It isn't healed, it is... becoming something new. That is what time does. It changes us. Into something new. Forms. Different. Pressure is no stranger to me. My life has been woven with the thread of pain, of squeezing discomfort. Tension. Difficulties, Heartache. I recently found myself in thought about who I was. Who I have been.. The little girl, the teenager, the new wife, the young mother, the hospital mom, the friend, the estranged, the sister. I. Have. Changed. I am new. I am different. My
Read more

{zero}

-
Image
Today will go down in the books as the longest day ever........ Day Zero. Transplant day. The new beginning. We started the festivities this morning at 4:00 AM......After just going to bed a couple of hours earlier, this was pretty early!!!! Paysen and I headed down to check in for his surgery....you could see the nerves on his face, I could feel them in his tiny hand that I held with in mine.. He had been looking toward this surgery for over a month. There had been so many delays, I can only imagine the things that were going on in My big boy's head...... He mustered the strength to show a brave face, however difficult. We checked him in and headed up. He took comfort in having both parents present for him. He listened as the "Sleep doctor" told of what she would do..... as we watched him we could see the clock ticking, he was growing more nervous. Paysen had a traumatic event in the operating room. It was the worst thing I have witnessed before a s
Read more

26 days.............

-
Image
Twenty six days ago I loaded the Honda up with enough stuff for a one day trip to Denver....... Four Wednesdays, Four weekend visits with our other half....624 hours.....Twenty six days....and Parklen, Phinlynn and I are still here. Parklen's illness has seemed to steadily increase...as time has gone on, each flare up has outdone the last.  This was the worst one yet.  This one made him sicker than he has been,  this one caused concern in everyone that knows Parklen.  This stay in the hospital included a tiny infant to nurse and care for.....this stay included frequent discussion about Parklen's future....and a three ring binder handed to every parent about to take their child into a bone marrow transplant. A binder filled with facts......a binder that will make your mommy tummy churn...... I have spent much time thumbing through the pages of this BMT book.....reading over risks, skimming through rules.....every moment realizing that if I EVER thought my life was har
Read more