The Journal cont.
Yes, they did win...but not with Curt's help. He played very little...my heart broke watching him struggle with the fatigue and the excess pounds and bloating the steroids caused. but...he held his ground...never complained...genuinely excited by the "Win"...
11-8-93...Curt is able to remain at school all day for the first time since his return from the hospital. Mrs. Bailey called at 1 p.m. to say Curt had a headache so dad took some tylenol to school and that took care of it. Mrs. Maple had the notebook overnight to learn more about Curt's treatment.
11-9-93...Curt had no headaches or problems at school today. Harriet called Mrs. Maple and said she would visit the school on Nov. 17th pending approval by Mrs. Bailey. Krissy stayed home from school today, but was feeling fine in the evening.
The 'other' children...our two daughters...casualties of cause...often over looked and neglected...our priority was with Curt....Abby and Krissy struggled on their own...each dealing with what was going on in totally different ways. Abby developed an independent attitude...totally denying and unable to face the fact the Curt might die. 11 yrs. old ...adopting an adult maturity much too soon. She was self sufficient in so many ways...she wanted to believe she really didn't 'need' anyone...and so she poured herself into her friendships...distancing herself from family...and especially Curt. She complained about his preferential treatment often at first...quickly learning to shrug it off and develop quite a resentment towards Curt. Krissy, at age 9, became Curt's best friend and nurtured him as often and as generously as she could...
11-10-93... Called Burzynski Research Institute and information is forthcoming. Tried to call 1-800-4cancer to ask about antineoplaston therapy but no luck, must call back Friday. Curt starting to show hair loss. Mrs. Bailey requests to see Curt's Pediatric Oncology notebook, will try to give it to her tomorrow.
11-11-93...Curt misses school because he has caught some "bug". Mommy takes him to Med. Center and his WBC is down to .7. He is admitted to the hospital in Dodge at 6 p.m. Is feeling better in the p.m.
11-12-93...Dad meets Mrs. Walker at Sunnyside and also talks to Mrs. Bailey. Curt is in isolation and still has a fever but is comfortable. Dad stays home to from work to help out. I.V.'s are given at 4 a.m. and disturbs sleep so night is kind of tough on Curt and mommy.
11-13-93...Curt is still comfortable. Grandma Hubbard comes to Dodge. Mommy gets videos to relieve some of the boredom. Dr. Harding reports that Curt's WBC is back up to 1.3 and his fever is controlled with tylenol. Dad spends night with Curt so mommy can get rested up. Night goes real well and Curt get plenty of sleep.
Curt's hair...falls out in clumps. Another reminder that what is happening is real. The poison he has received...is doing it's supposed magic. Hair everywhere...scattered on his bed, his floor...
11-14-93...Curt does real good today. WBC is on it's way up and temp. stays down. Dad shaves his head and looks real sharp.
1-15-93...Curt gets out of the hospital today at about 10:30 a.m. Will have to remain out of school for the rest of the week. Grandma Hubbard is going to stay so mommy can return to work.
11-16-93...Curt and Grandma Hubbard stayed home together today. Grandma got him to catch up all the homework he had. Curt is old self today (except for the hair, of course) full of energy and oneriness. Mrs. Bailey gave dad a note about a meeting Thursday afternoon with Mrs. Bailey, mom, dad, and Mr. Kincaid concerning Curt's schooling.
11-17-93...Dad and Curt have a disagreement about amount of schoolwork done. Curt does quite a bit more and Mommy sets up a schedule of what needs to be done on Thurs., and Fri. which seems to work pretty good. Harriet McGuire and Dr. Jeff Muilenburg visit Curt's classroom. Mommy video tapes it and it works out well.
Curt had a fear that his peers would...for whatever reason think differently of him...his appearance so drastically changed...and missing so much of school...he was sure that he would never 'fit' in again. The Wichita Hospital was gracious enough to send Curt's favorite nurse and one of the med students out to Dodge to speak with Curt's class in an effort to educate them about Curt's condition...and squelch any fears they might have about being around Curt. The kids were so wonderful....so accepting...asking real questions...and Mrs. Bailey, Curt's teacher....announced that from now on...every day was "Hat" day...the only 3rd grade class at Sunnyside Elementary allowed to don hats....which caused the class to go wild!...what a beautiful moment...and what a revelation...strive to find the positives...
11-18-93...Curt still out of school, of course but does his school work as desired. So goes pretty good. Mommy and dad meed with Mrs. Bailey, Mrs. Walker and Mr. Kincaid about a tutor to come to the house.
11-19-93...Curt still at home but full of energy and so far the same old Curt. Dad took the last of this weeks homework to school. Mrs. Brady calls in the evening and requests to show the tape of Harriet and Dr. Mulenburg to her class.
Ironically I did not see "the same old Curt". The child who was so demonstrative with his affection and ability to talk about anything...was not the same child I brought home from the hospital in Wichita. This Child was pulling and pushing himself away from me...physically and emotionally. I knew why...his reference drawn from reactions of what he picked up on while at the hospital...the very things we tried to hide from him...he saw...heard...felt...the air of sadness...his intelligence and uncanny ability to "read" things exactly as they were...played against his emotional status. His behavior screamed..."don't love me...I'm going away anyway" He became obstinate...he reacted in ways he never had before to trivial things...the mundane things...became huge battles of will. Deep down I knew what he was doing....he was leaving us...before he had to go...
11-20-93...Curt got out of the house for a little while, riding around in the van with Dad and Krissy. Jeff Oliphant came over in the evening and gave Curt some pictures signed by some of the Kansas City Chiefs that Dr. Pick was able to get.
11-21-93...Very good day; weather perfect so Curt and Dad played football and then later some baseball. Curt plenty onery as usual.
cont.
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