Journal Entry

Wednesday late afternoon, Jan. 11, 2006

“What deeds of power are
being done by His hands!”

 (Mark 6:2)

Greetings from Philadelphia ’s newest book and art store!!!!  (Oh, I mean from Christi’s hospital room, but with her wide assortment of reading materials and latest art creations it appears to be a funky new bookstore.)  Actually it’s a large, lovely hotel suite (wink) overlooking the busy Emergency Room – so we’ve had a lot of “interesting” sight seeing this trip!  OK, I still have my sense of humor, all must be well!! 

Tuesday arrived and Dr. Maris was in our room early to tell us that they had tracked the package via Federal Express and it was on its way.  He again apologized and I said, “I can’t even imagine how expensive that error was.”  He said, “It’s not the money; it’s the fact that the drug is in very short supply.  It could have gone to another patient and it has delayed Christi’s treatment.”  He concluded that it was a downright embarrassment.  I thanked him for letting us know her drugs were “in the mail”, but truly was skeptical so I thought it best to keep Christi up and moving just in case he was right and she’d soon be stuck in her room for a few days.  We played in the playroom, perused the gift shop, buzzed through the cafeteria and tried the piano- but that hurt because they ended up having to put the IV right on top of her hand despite the fact she said, “But that’s my piano hand.”  Later, they discovered us painting in the playroom and they let us know that the drug had indeed arrived, been properly thawed and she needed to get to her room to get all of her pre medications to get started.  Yippee!  I couldn’t have been any more excited!!  “And my God will meet all of your needs according to his glorious riches in Christ Jesus.”  (Philippians 4:19)

Back in her room with a small crowd gathered around at their first attempt at this style of treatment I tried to lighten the moment and to let them know that there were no hard feelings about the mistake.  I tried to joke to Dr. Maris, “So where did today’s pharmacist put the antibodies – in a beer cooler next to the live fish bait?”  OK, I thought I was being funny and making light of the moment, but they were all really tense!!  Dr. Maris is always so serious and quite obviously still upset by the snafu, he didn’t even smile.  He responded, “If you must know this is what happened.  The pharmacist mixed the drug and because she’s on crutches she asked a supervisor, mind you, to put it in the freezer for her because she can’t carry a lot on crutches.  That area is currently being renovated and now there is a refrigerator exactly where the freezer used to be – not that that is any excuse, but that is how it happened.”  (ooh – still a wee bit touchy I see!  Smile.)

They started the treatment at noon .  The minutes then hours ticked by – nothing!  Not a wince of pain or any side effects.  I knew it would be a mistake, but I text messaged Shayne “Cake Walk!” as I knew he was worried.  He responded with a telephone call and hearing Christi giggle and laugh watching cartoons had to make him feel better.   Dr. Maris came in right at 2:00 and inquired, “No pain meds?”  I said, “Nothing.” Then joked, “Are you really giving her the drug?  I mean after yesterday and all I’m wondering if this pharmacist just used water – I’d like to see some indication that this is doing something.”  Dr. Maris explained that because there isn’t any pain doesn’t mean it’s not working.  He just walked out the door when all of a sudden Christi started crying and withering that her back hurt soooooooooooooo bad. 

The next 3-4 hours were horrendous.  Dreadful pain in her spine, head, hips and ribs.  (Interesting EXACTLY where her largest areas of disease are.)  I rubbed her lower back until I didn’t think my hands could massage her any more.  Heat packs seemed to help – as did the doses of Tylenol and morphine.  Next the shakes, rigors and chills set in.  Meperidine (Demerol) helped with that.  Her heart rate kept increasing.  Finally, the narcotics must have knocked her out because she fell asleep and I crashed myself for a ten minute nap I was extremely exhausted.  It was grueling!

Fever set in next and it kept going higher and higher.  She woke up and vomited every time she did.  I kept thinking, “How could this kick in so fast; she was fine an hour ago – wow!”  Because she spiked a fever they set in with the Gentamicin, Oxacillin and Ceftazidime (antibiotics) required for 24 hours.  I soon learned that if her fever went to 40 Centigrade, she’d be removed from the study.  (Oh, fear terrorized my body.  I was shaking call Shayne and asked him to get down on his knees and start praying.)  She couldn’t keep the Tylenol down, how was the fever going to be reduced??!!  Zofran was given – a drug for nausea/vomiting.  I aroused her and explained the seriousness of the matter and that she didn’t have any options she had to get that Tylenol in her and not to throw up.  Finally at 6:00 she kept it down and later her fever broke.  Whew!  She finally ate and wanted to watch TV about 10PM .  I did two McDonald’s happy meal runs for her – so glad she was eating something and thankful I had McDonald’s money from Christmas!  Thankfully, throughout it all her blood pressure (What Dr. Maris was most concerned about) was okay.  Praise Him!!  So for my NB friends who may be reading this – it was nearly identical to a MSK 3F8 experience.  The good thing is these antibodies are for three days instead of two weeks!!  (We just wonder if they’ll work and we hope and pray they work even better!) 

During the night on Tuesday her fever came back, but not quite as high.  It broke about 3:30 AM and didn’t set it again.  Today’s treatment wasn’t as tough, but I think it was because of learning from yesterday’s experience and adjusting the medications accordingly.  Today we premedicated with morphine and Demerol.  The pain wasn’t as bad during the infusion.  After the infusion all in the room were VERY pleased that she didn’t spike a fever and that her blood pressure was excellent.  (Many smiles and claps of relief!)  Then…………..she started in with the vomiting and alternated that in between lightly sleeping.  (I think all of the narcotics knocked her out.)  So far tonight – still no fever and now she’s snoring away cuddled up with “Bluie”.

So what will tomorrow’s treatment of the hu 14.18 IL protein fusion Phase II study bring?  Is there a chance we may still make our Friday flight to Tampa ?  I still have a ting of hope and have been praying it will all turn out that way.  Today’s treatment was much better than I expected.  Hopefully, we’ll have a good, restful night; she appears to be retaining some fluid in her face. I simply must get some sleep soon; I’m exhausted!  Tim dropped off some great food and some treats from his family for Christi and I.  It was so sweet and the highlight of my day!  (Thanks, Grants!!)  That’s all I have to share.  I’ll update soon.

Thanks for your continued prayers, love and support!

Blood Counts early Wednesday morning:

White 7.6 (Wow!  This treatment has done what it was to do – revved up her own immune system to (hopefully) attack and kill those blasted cancer cells!  This was exciting to see!)

Hemoglobin 11.6 (great!)

Platelets 107 (Low – but they’ve been sucking a lot of blood out of her.)

ANC 6,969 (Whoa!   That’s one immune system hard at work!  Go, Christi!)

Christi’s Funnies:  While trying to get Christi’s IV in she asked, “What do you do for little babies?”  She learned that they are held down.  Later I asked Christi if she remembered getting her first IV in Columbus back in 2002 when they had to hold her down.  She said, “Yes.”  I asked her if she remembered when they made me leave the room that day.  She said, “Yes.  I was wishing I didn’t have parents that day.”  I asked her why.  She said, “Because they said I’d have to get the IV when Dad got back and I thought if he never came back, I wouldn’t have to get the IV.”  (Oh, from the mind of a five year old – and still vividly remembered, nearly 3 ½ years later.  Wild!)

While getting ready to access her mediport on Monday she was flat on her back while the nurse cleansed the area with an alcohol swab.  Christi must have received a big whiff up her nose because she said, “And some people drink that stuff!  Gross!”

Email to Angela from Shayne on Sunday night, Jan. 8th:

I am glad you had safe travels.  We did fine here, just sad - both of us I think.   It is strange to think of more than a week apart for the girls.  They are such good pals.

Shayla was an angel all day today.   

Christi could not be in any better hands than yours.  Please do not hesitate to ask me for relief if this gets too overwhelming. 

Love to you,

Email to Angela from Shayne on Monday night, Jan. 9th:

Sounds like you had a great day....errrr well except for the big mistake.  Some people there had a very bad day at the office.  It is back to bartending for that pharmacist.  "Would you like that frozen or on the rocks?"

Isn't that little used book store cool?  I can picture us milling around in old musty bookstores when we retire....buying more books than we can read. Hopefully, sending them to our nutty little professor Christi for her Ivy League office or to Shayla to decorate her New York flat or to burn for heat in her igloo.  hee hee

Love to you,