Harder to Write Today

Frustrated is the word that keeps popping into my head.  One minute I'm looking at Willem and he's sound asleep and then I look over and he has his NJ tube out again.  Neither Erin or I saw him move. Erin asks me why I'm acting so mad and I can only reply that it is because I am mad.  I am angry and frustrated.

I stare disappointed into Willem's confused eyes, trying to convey my anger at him for pulling out his feeding tube.  Does he know why I am angry?  Does he know what he has done?  Why can he not understand that he needs that damn tube?!  My first-born son is wasting away before my eyes and I am powerless to stop it.

Willem whines and I become suffocated by my own guilt for being angry with him.

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Thank you John for your email to me.  Your words are kind and very touching and in them I found some strength.  Thank you.

Thank you Leigh for taking Wyatt and Liliana today.

Thank you Olga and RJ for the gas card.  Excellent idea as we use up a lot of gas driving back and forth.  Thank you very much.

Rough Morning

Arrived to find that Willem had a rough morning of fever, diarrhea, and vomiting.  There was a little blood in the stool and the emesis was green (bile) from the bilirubin -- which is now up to 16.9 -- not having an exit strategy.  Nothing has been grown to suggest what the diarrhea is all about so it is probably mucositis.

Willem's white blood cell count was up a little but his neutrophils were still at zero.  Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.

Still holding off on feeding him via the NJ because of the diarrhea.  Doctor is afraid of irritating the GI too much.

Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired.  The physical therapist said his heel chords are very tight and added that he's not been getting enough PT.  To which I replied, "Shame on everybody."  I will now do some PT stretches with Willem.

Doctor still very hopeful and positive.  There are many good numbers in relation to Willem's state of health.  He is still on the mend and in very good hands.

I asked the doctor if it was okay to give him kisses.  She looked at me kind of funny and said "Of course."

He Speaks!!!

Willem said his first complete sentence since August 14!  I was rubbing his head while the nurse technician (NT) was changing his bedding and he was moaning.  I don't remember what I said to him but he said, "I want you to get out of here."

I wasn't sure at first he said anything at all because the NT was talking with Erin and I exclaimed, "Shhh!  I think he just said something!"  So I asked Willem if he just said something and to say it again.  "Willem.  Willem.  What did you just say?"  Moan.  Moan.  "I want you to get out of here." Do you know how beautiful those words were?  Wow.  What an awesome experience!

Now to put it in context:  He was getting his bedding changed and... um... other things so it was probably embarrassing to have us there watching.  Not sure.  I took it for what was said and wasn't at all hurt by it but Erin thought that maybe he was embarrassed by us being there and I thought it a good point.

Medical stuff:  Lab results back from the bone marrow test and the doctor said that Willem's bone marrow is empty.  What does that mean?  It means that Willem's was 5% full and normal is 80 - 90% full.  The test also revealed that there were still more histiocytes (the stuff that has been eating all the good cells) than there should be.  The doctor stated that she was disappointed by the results but still very hopeful.

They will be holding off on the chemo until Monday.
Giving him Gamma Globulin to provide Willem with passive immunity.
Adding Prozac to his list of medications.
He's been holding on to transfusions -- which is good.
Will be increasing his calorie intake.
Bilirubin up again; to 16 which was probably because he pulled his NJ out.
Diarrhea increased so not putting anything in the NJ just yet.

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Thank you John for your very generous Paypal donation to Willem's recovery.  Our family thanks you.

Thank you HDCH for providing sitters for Willem so I can go home and sleep and not go nutso.  I predict a nice long run tomorrow.

Thank you Terri for watching Wyatt and Liliana today so Erin and I could spend more uninterrupted time with Willem.  You are AWESOME!!!

A Picture Is Worth A Thousand Words

Outside for the first time in a month!  And playing!

One of Those Days

Willem's restraints were replaced by big white boxing glove-like mitts that doubled as a pillow for him at times which was kind of cute actually.  Eventually the mitts went away too as one of the nurses had fashioned a, for lack of a better word, halter-top-like-shirt-thingy that covered the central line.  Willem no longer seems interested in tugging at the line.

For me it was a long and sleepless night followed by a long and sleepless day.  Lack of sleep does wonders to play tricks on one's psyche and never for the good.  Found today to be particular stressful but, in looking back on it, not sure why.  Today was no worse than others; clearly the lack of sleep.

Willem gave Wyatt and Liliana a hug.  Heart wrenching.

Erin broke down and cried a few times while we were at our childrens' school open house when the teachers and parents came up to us to give their support.  Erin said that she usually just cries in the shower so the children don't see.  I did not know this. The stress is taking its toll to be sure.  We are, however, finding our footing and pressing on.

We are truly blessed by the outpouring of support we've received.

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Thank you Trevor for your Paypal donation.  Thank you so much and I truly hope to meet you soon.
Thank you Greg for your Paypal donation.  I miss seeing you and having our laughs.  'Could use some laughs.

Biopsy revealed that Willem has a serious yeast infection in his esophagus; probably caused by the chemo, steroids, and HLH.

Willem was put on Ambisome for the infection and will be on it until the infection clears.  This drug is hard on kidneys so they'll be watching his kidneys closely.

Willem's white blood cell count was at zero because of chemo and HLH so they will be holding off on the VP16 / Etopocide / chemo until after his bone marrow test which is tomorrow at 11:30am.  His NJ feeding tube will go back in at that time as well.  He will also be started on Neupogen to bring his white blood cell counts back up.

Decreasing his steroids to half (2.5mg) two times per day which should bring him out of his funk a little more.

All in all the doc said that there is a lot that looks good.  Will know more after the bone marrow test comes back.

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Thank you grandma and grandpa Weston for the visit.  Hopefully by the time Willem gets out of the hospital you two can figure out the parking situation.

Thank you Suzy.  Wow.  Thank you so much.  You are a super soldier and a super person.  Thank you.

Thank you Betsy for the all the food!  The cookies are for mommy and daddy only, right?

Preventive Medicine

Add restraints to the list of medicines.  Around 5am Willem tried pulling out his main line.  Now he gets restraints.  This sucks.

Some poor kid is screaming in the room next door.  That sucks too.

Couldn't get Willem to swallow any water this morning but he sure does like having it in his mouth.  Makes him smile -- which doesn't suck.