Tuesday, July 3, 2007

chemo cycle 4

we have just returned from a 12-hour day, filled with every possible frustration and marked by constant pain. toby has completed day 1 of chemo cycle 4. he's sleeping fitfully upstairs and i'll wake him in a few minutes to pee and get some anti-nausea medication. he is hooked up to a huge backpack of chemo bags and fluid that sits on the floor near his bed. one of the chemo drugs can cause bladder bleeding and kidney failure, so we have to wake toby throughout the night to empty his bladder. it was determined today that toby cannot metabolize codeine, so the pain meds we were discharged with last night did not work to keep him even nominally comfortable. he was switched to morphine today, but still seems very, very tender and miserable. i want to give you all the details, but am so exhausted that it will have to wait until after chemo is over this weekend.

14 comments:

Anonymous said...

Dear Mooki and Steve, After the relief and exhilaration of the success of Toby's surgery, it seems like you and all of us are on a merry-go-round of ups and downs. If God was with us on the ups, he's surely still with us on the downs- it's just harder to see, especially if Toby's in pain.
Let's pray with the psalmist:
"The Lord is my shepherd;
I have everything I need.
He lets me rest in fields of green grass
and leads me to quiet pools of fresh water.
He gives me new strength.
He guides me in the right way,
as He has promised.
Even if that way goes through deepest darkness,
I will not be afraid, Lord,
because you are with me!
Your shepherd's rod and staff keep me safe.
You prepare a banquet for me,
where all my enemies can see me;
You welcome me by pouring ointment on my head
and filling my cup to the brim.
Certainly your goodness and love will be with me as long as I live;
And your house will be my home forever."
Morning and evening we pray for you! Love, Aunt Blanche& Uncle John

LindaSueBuhl said...

Will pray tonight for Toby to have pain relief and deep, restorative sleep - bless you all - it is so hard to go through these "discoveries" about what he can tolerate and what is not good. You are in our prayers asking that for Independence Day NEXT year you'll be watching fireworks and having a picnic.
Your Texas fans.

Anonymous said...

so sorry to hear that Toby is in such a rough spot. sending hugs and kisses to all of you.

Anonymous said...

Dear Ones,
Yesterday I picked up our mail at the PO. There was a package for us from your parents in Haifa. Your Mother had been at her Armenian hairdresser's shop in the Arabic section of Haifa when a peddler came in offering his wares. She thought of her family in the U.S. and decided to buy something for us. She looked through the small collection of items, chose beautiful wooden praying beads and in her message to us she said "We pray with you for Toby's recovery." We recited the Rosary prayers on our new beads last night, using the Joyful Mysteries. We continue to pray with Yochi and Shabtai for our sweet, sweet grandson Toby, whom we love dearly. We wait to hear that today has been a better day for him. Love, Grandmother & Grandfather Pannone

Anonymous said...

I remain steadfast in my faith that there are much better days ahead for all of you. I pray for a respite for Toby...gentle healing. Mookie and Steve, may you find some sunshine and hope during this difficult time.

Esther and Fred Brauer said...

Dear Mooki and family,
We were away some of last week(Iwas having minor foot surgery),but were so relieved to learn that Toby's surgery went well. He really is a tough liile guy.We will look for reports of continued good progress in this long journey. You and he are always in our thoughts and prayers. Is there anything we can do to help from this long distance?
Try to take care of yourselves and each other. Esther Brauer

Anonymous said...

It is impossible to imagine your journey, but please know that so many of us, even those who don't know, wish you the least arduous journey possible. I have faith that you will find comfort and healing and come through this stronger and more in touch with your love for one another.

JoAnn said...

Hang in there, Mooki. Remember when he was an infant, and you never slept? You're half-way through the week.

Anonymous said...

So glad and thankful to hear that Toby is hanging in there--he has been daily in our thoughts. We are wishing for relief and continued recovery for him and respite for all of you, and happy times ahead. --a PS neighbor who hopes to see you all happily running around the park

nettie knotts said...

ya'll r n my thoughts and prayers .your ordeal has reached out to many and know it helps us look outside of ourselves and our trivial problems and come 2gether with prayers and love for ya'll. little Toby is such an inspiration, and your strength and perseverance are awsome. love, nettie

Anonymous said...

I am a Park Slope Parent who has been following your family's story since the beginning. Yesterday while I watched my 3.5 yo daughter play in the 321 playground, I remembered Toby's father's comment about how it feels to look at healthy children now. I shuddered a bit, because I realized how blessed we were and how that blessing can so easily be taken away. I think of your family often and pray so much for Toby's recovery. I like to imagine a time a few years from now where you will be talking to a stranger and tell them how Toby had been so very sick and they will look at him and marvel, since he looks like any other rambuncious 6 year old. I can imagine at a time like this it's not much, but please know there are so many people rooting for Toby and his family.

Valerie

Anonymous said...

I hope and pray that by now Toby is resting more comfortably and that his healing is speeding along and his physical strength rapidly returns.

It breaks my heart to think of how much his young little body has had to endure, but I have faith that he'll soon be enjoying a healthy freedom on the playground and in kindergarten with new-found friends.

Anonymous said...

Sending good thoughts and wishes to Toby, family and friends. Please know so many of us are out here, hoping and wanting to stay connected.

Nancy W.

noogs said...

Hi there -- Wanted to send a short note letting you know that we're all thinking about you. Toby sounds like such a loving, snuggly and strong little boy and we honestly think about him daily.

We will check back to see how the procedures went this weekend.

Lots of love and hope being sent your way -- The Barkins