April 18 1998
We are still waiting to hear from Dr. Neal Young, the AA specialist at the National
Institutes of Health that we visited last month. I don't mind admitting that I am getting ants in my pants. Katy got a unit of platelets on Thursday the 16th (it was her 42nd unit). However, it was promising that her hemoglobin remained steady at 8.6. She hasn't needed a packed red cell transfusion since February 22nd. She starts back to preschool on Monday, as always "barring incident". Next count check is Wednesday afternoon, April 22nd.
April 20 1998
Well, I got the report today...and I'm not really sure what to make of it! It outlines our three options....BMT,Immunosuppressive therapy, and supportive care, but doesn't really TELL us what to do. Ugh. We will be meeting with Katy's Hematology Dr.'s in Chicago next week to decide where to go next. Katy started preschool yesterday, and is doing wonderfully. She loves it so much...and that's all she talks about. She can hardly wait to get up each morning and get on the bus! I find it to be a refreshing break for me, and she does go to bed earlier at night, because she's whipped! We are trying to keep our chins up!
April 22 1998
Well, Katy had counts today, and although none of them were low enough to transfuse her, I was a bit disappointed that her hemoglobin isn't holding up like we had hoped. She'll probably need platelets by Monday of next week.
I hope that all of you who would like to keep up on Katy's condition will bookmark this page and check back often...I am constantly adding, changing and updating. Her counts from today are on the "Current Status" page. A big thank you to everyone who continues to keep Katy in their prayers!
April 25 1998
I was sleeping soundly this morning at about 6:30, when I was awakened by the ever-familiar sound of a "seal-bark" cough coming from Katy's room. She is coughing and sneezing like a nut, but so far, no fever. She had her little friend Kristen over Monday, and her mom called later that day to say that Kristen had tested positive for the Mycoplasma pneumonae bacteria. So, needless to say....I'm keeping a close eye on Katy. We have a doctor's appointment tomorrow (Monday) for a regular count check and probably platelets, so I'm hoping this thing won't mushroom before then. April 28th 1998
Well, our trip to Chicago went about as well as could be expected. The good news is that Katy's pneumonia is probably just viral, and seems to be clearing up just fine. We still don't have any definitive answers about the direction of Katy's treatment, but her docs said that since she is medically stable, there is no reason to rush our decision. We may be heading out to John's Hopkins for an evaluation soon. David and I are trying our best to weigh the pros and cons and make a reasonable decision, but this is the hardest thing we have ever done in our lives. After we got back into Kankakee, Katy and I went to a blood drive organized by my Aunt, and it was a great success. Katy as usual, charmed the pants off of the blood bank staff and donors alike. It was a wonderful event, and a total of nearly 60 pints were collected. April 30th 1998
I know that Katy is feeling better today. Her fever has passed, and she is getting herself in to trouble again. (This is always a good sign for Katy....maybe not for MOMMY, but for Katy.)After I took Seth to kindergarten today, Katy reported that she was tired and wanted to watch a movie. So, I popped in "Flubber" and left her in the playroom, hoping she would nod off and have a good nap. I was answering e-mail, when she came in to my room, carrying a mixing bowl, with "lunch" that she had cooked up for me. It was "Banana Soup MOM!". In the bowl she had smashed a banana, added water, and seasoned it with a shaker FULL of salt and a few whole peppercorns for good measure. How could I be mad?
May 5th 1998
Katy is off at school today...we have "doctor" day tomorrow, and I can hardly wait to see what her counts are. I swear, sometimes it feels like we just live from CBC to CBC. Yesterday, Katy got her hair cut in a short "bob" style. It is SOOO adorable. I thought that if we cut her hair a little shorter...losing it (when and if she gets chemo) might be a little easier on her. The lady who cuts it suggested that we come back just before "the event" and she'll give her a little "Dorothy Hamill" cut. Katy has been complaining of leg pain alot lately. I guess that this is just a side effect of the GMCSF, but we will ask the doctors tomorrow. Love Ya'll!
May 6th 1998
Well..our "doctor day" went splendidly...because Katy did not need any transfusions. Her current counts are posted on her web page under "current status" for anyone interested. I think we have finally decided the direction of Katy's treatment. After plenty of research and soul searching, we have decided that Katy will have Cytoxan (chemo) therapy this summer. It just seems like the best option with the least risk and most hope for recovery. So, we are trying to prepare her for the fact that she will lose her hair and be sick most of the summer. Our best guess is that she will start chemo on or around the 15th of June. Looks like we'll need to go hat shopping! May 11th 1998
Hmmm. Well, I'm not sure what to say today. Katy's platelets dipped to 8, but we are going to wait until Thursday to see how low they will go. This "cat and mouse" game is really starting to wear on me, and Katy too. I think the fact that this poor kid can't seem to make more than 10 thousand platelets on her own pretty much leads us in the direction of the chemo we are planning for this summer. Bummer. May 14th 1998
Today, overall, was not a shabby day...Katy's counts were acceptable, and her platelets held up at 8 thousand. Now, I know they SOUND crappy, but for Katy, 8 thousand platelets is great, because she hasn't had a platelet transfusion in 17 days, and we are sure that the few platelets she does have were actually produced by HER marrow. However encouraging this is, I had a good talk with her Dr. in Chicago this afternoon. I cannot say enough good things about Katy's medical team. They are kind, compassionate people, who understand completely how tough these decisions are, and ALWAYS take the time to explain every detail to us and make sure we understand. The most impressive thing though..is that they are so accessible.
When I call with a question or concern...there is no talking to the nurse...or phone tag. I either talk to a DR. immediately, or they phone me back right away. This of course, really makes me feel secure. Anyway, back to the gist of our conversation.
Basically, Katy's docs feel that despite her relatively stable counts, her marrow is a ticking time bomb, and without treatment, she will eventually have another Aplastic Crisis.
Our next step is the Cytoxan therapy to be initiated in a month or so. She will likely lose her hair, become transfusion dependent for a while, (been there...done that!) and become sterile. This makes me sad...but putting things into perspective,
seems like a fair price fo her to live a somewhat normal life. So...we forge ahead!! May 16th 1998
Katy is having a wonderful day today. Her brother and sister are gone most of the day on a scouting field trip, so she and I are spending some quality time together. One of Katy's nurses in the Expanded Care Unit at the hospital owns a horse, and keeps it at a stable not far from our home. The weather is so beautiful today, we decided to go out and visit Julie and her horse Bubba. We took pictures that we'll add as soon as they are developed. Julie let Katy ride Bubba (with her helmet on of course!) and she had a fabulous time! She just loved riding him, and watching Julie ride. Afterwards, we fed him some carrots and apples and visited with some other horses in the stable. It was alot of fun...THANK YOU JULIE!! I find that Katy's moods are better and she is calmer when we have "alone time" together....as long as the "alone time" is outside of the hospital!!! She will be going in for counts later this evening if she starts to look worse (bruising, petichae, etc) otherwise, we will try to wait until Tuesday. May 20th 1998
Katy is looking awful. I guess in the winter, it was easy to conceal her bruises and petichae under her clothes...but with the onset of summer and short outfits, you can clearly see that this kid is sick! I've had many a "troubled" look thrown my way when we go out together....and I live in fear that someone will be taking down my license plate number and reporting me to the child protection authorities! She bruises whenever we touch her, and she is such an active kid, it's hard to get her to regulate her play so that she doesn't hurt herself. She wears her helmet at the playground and school, but we can't wrap her in bubble wrap (as much as I'd like to!)so her body really takes a beating.
Her spirits however, are fine. She's really enjoying school, and is generally happy. I have to confess this.....last night, I was combing her hair (which is beautiful by the way...) and I pulled it all up into a tiny bun, so I could try to visualize how she would look with no hair. Let me tell ya...she was STILL cute!! May 22nd 1998
Katy got her 44th unit of donor platelets today. Although her platelet count hadn't declined yet, she was starting to have some obvious symptoms of bleeding, and since we are heading out of town for the weekend her doctor felt it best that we play it safe and go ahead with the transfusion. The kids and I are looking forward to a relaxing weekend at my sister's house, a nice little 2 day respite permits me to live in denial for a little while....but don't worry... reality eventually smacks me right in the face and wakes me up!
May 27th 1998
Well, we are back in to our routine after a wonderful few days at my sister's house. The kids spent a lot of time in the "cuzzi" (a.k.a. the jacuzzi) and my sister waited on us hand and foot. THANK YOU AUNT NATALIE!! It was a great way for us all to decompress and relax. Katy's last day of preschool is this Friday, and I KNOW she will be one unhappy little camper. She loves school so much, and the end of school signals major "hospital time" for her. I did think of one tiny little positive thread to Katy's upcoming chemo. You folks will think this is funny....we are checking in on a Tuesday...when they have a hospital-wide game of bingo for the kids. It's broadcast over the T.V. in each child's room, and they have the opportunity to win neat prizes like beanie babies, coloring books, t-shirts, etc. Katy and I love to play, and that will certainly be a nice way to start out what will be an otherwise quite unpleasant hospital stay. See? I found the "silver lining"!
May 30th 1998
Our day at the clinic yesterday was exhausting. I usually only have Katy with me (she's enough) but since the other two are out of school, and David was working I had to take everyone along. It was not fun, but we managed. Katy's counts are acting strange again (see the "Current Status" page) but she is feeling just fine. When we went to the Expanded Care center to have her port deaccessed, there was another little girl there about Katy's age that needed I.V. antibiotics, and they were having trouble starting the I.V. One of her favorite nurses, Lynn, was called down from pediatrics to start the little girl's I.V. and Katy volunteered to "hold her hand....so it won't hurt so much".
It was so cute! I think this whole experience has given Katy a special empathy that is rare in children. I was so proud of her! And guess what?? That little girl didn't cry, and thanked Katy with a hug afterwards.
June 2nd 1998
Ah...glorious sleep!! We all slept in until about 8:30 this morning. Katy really misses school, but she doesn't miss getting up at 6 a.m. Our visit to the clinic was fine...but Katy looks awful. I'm not sure if it's the just the onset of summer, but Katy is bruises from head to toe. One just appeared on her chin yesterday for no reason....when I asked her what happened, she said "Nothin'...it's just one of my regular bruises!" (like it's normal!) Anyway...part of the problem is that she is feeling so good, that she doesn't really limit her activity, and even little bumps give her BIG bruises. We will go back to the Expanded Care center this Saturday for another count check...and to visit one of Katy's favorite nurses, Julie (a.k.a. "Jewie") and thank her for the neat green Winnie-the-Pooh overalls and hat that she bought for Katy.
June 6th 1998 (Happy Anniversary Honey!)
Today was a mixed up day. We went to the clinic for a count check...and fully expected for Katy to get a platelet transfusion, because on the outside....she looks awful. (i.e. bruises, petichae) When her counts came back...I was surprised to say the least!! They have all increased....including the infamous "damn platelets". This leaves us hanging...because here we were, ready to start the chemo in about a week...and now we just don't know what will happen. I would love nothing more than for Katy to get better and not need any treatment, but I'm almost afraid to hope for that, because we've already had many disappointments. Sorry I'm rambling. My guess is that Katy will have a Bone Marrow Aspirate when we go to Chicago next week, and we will make a decision based on the results.
June 10th 1998
Well, it was worth a shot...but Katy's counts really didn't hold up, so unfortunately, we will be going ahead with the Cytoxan therapy next week. We have a general feeling of resolve around here....we know in our hearts, that besides a Bone Marrow Transplant, this treatment is really Katy's only shot at a good long-term outcome. Still, it seems unfair, that in order to make her better, we have to make her so sick. But...we're not going to whine about it....in true Katy style...we are going to put our heads down, and "bulldoze" our way through this. This is just Katy's style...and it has been this way since the day she was born. She didn't even wait for the obstetrician to arrive....she just hooked her feet up under my ribcage and pushed her way out. She was born in 14 minutes. No kidding. I went from 4 cm dialated to delivery in 14 minutes. It was as if she was saying "Out of my WAY, I'm comin' through!" And...she holds true to her motto to this day. When we talked about her hair falling out, she just said..."Well then, it won't hurt when you comb it...and I'll just look like Michael Jordan!" What a kid. She amazes me every day....
June 14th 1998
I really wish you all could have seen Katy at her dance recital yesterday. She really stole the show. She did a short ballet with three other little girls all about 4 years old. It was called "Cherry Pie" and they, of course, were just adorable.
Anyway, they were doing great, when about halfway through the dance, Katy noticed her Aunts sitting in the audience, and just ran to the front of the stage waving at them. Then she skipped back and joined back in the dance. At the end, the girls were supposed to do a curtsy, and "ballet run" off stage, but Katy proceeded to blow huge kisses to the cheering crowd on her way offstage. What a riot! Well....we are headed out to Chicago, later today, and will check in to Children's Memorial tomorrow to start her chemotherapy. I have feelings ranging from apprehension to excitement, that this may be what finally makes her better. Everbody keep up the prayers.
June 19th 1998
Well folks, I have to tell you...the Cytoxan infusions have been very anticlimactic. Except for one brief episode of upset stomach, she has been feeling just fine.....eating, playing, and driving me nuts!! She is scheduled for her last infusion tonight, and if everything goes smoothly...we'll head home sometime tomorrow. We've heard that she really won't start feeling bad for a few days...but about a week post Cytoxan, her hair will fall out, she'll get the mouth sores, be prone to infection, and transfusion dependent again. So...we are bracing for the brunt of this.
June 21, 1998
Hello Friends! The chemo is done, and Katy fared pretty darn good. Thanks to some good anti-nausea drugs, her appetite is fine if not totally weird. She is having some strange food cravings, so we indulge them whenever possible. She is however, VERY tired....falling back to sleep this morning for about 2 1/2 hours. But, when she is awake....she's happy, bubbly and precocious as ever. We anticipate her hair will fall out by next Friday, and her blood counts will crash, so she will be transfusion dependent for a while. In about 3 to 4 months we should have a clearer picture of wether or not the Cytoxan has been an effective treatment for her Aplastic Anemia. Keep your fingers crossed and pray like crazy! She will have counts done on Tuesday.
June 23rd 1998
Well, you wouldn't know it by looking at her, but Katy has essentially no immune system, as her white blood count took it's expected nosedive over the weekend. This is the time that I find the scariest, as she is open season for all kinds of infection. It's hard not to hover constantly and sanitize every last inch of my house, but I'm trying to stay calm for her. She, of course couldn't care less, because she feels just fine. One of these days, when she gets older, I'll have a BIG story to tell her!
June 28th 1998
Well....Katy scared the living daylights out of us. She developed a 102.5 fever yesterday at noon, and became very lethargic and pale, so we rushed her in and she was admitted. She continued to worsen, reaching temps of 104.6 with a dropping blood pressure until today, when they identified the cause as strep bacteria in her bloodstream, and targeted it with just the right antibiotics. She is improving slowly, but while she is suceptible to infection, she will remain hospitalized, probably for two weeks or so. She is (as I type) lying in bed, watching Nickelodeon, and waiting for one of her favorite nurses, Joyce, to come on shift at 7 p.m.
July 1st 1998
HAPPY BIRTHDAY DADDY! Today is David's 37th birthday, and we are STILL in the hospital. Katy's fevers are much better, but I have a feeling that Katy will be kept in isolation until her WBC recovers. Katy is getting VERY tired of being here, a kid can only do so many craft projects, watch so much TV, and play so much Nintendo before they want to "bust out". She's had alot of (healthy) visitors the past few days which has helped to pass the time, but she is still experiencing cabin fever BIG TIME. I feel for her, because I am getting tired of it too...but at least I have the ability to understand why. If we try to explain to Katy that we can't leave because she can't fight germies...she simply promises not to touch any! Ugh.
July 8th 1998
Well....it's now a week later, and Katy is still in the hospital, but doing well. She is still having some problems eating, got a monster yeast infection from all of the antibiotics she's on, but is generally in good spirits, although she really would like to go home. I can't say as I blame her. I, of course, stay with her all the time, with the exception of a few hours here and there when her daddy or friends stay with her so I can run home to do laundry and collect myself. Her doctor is still unsure when we will be able to go home, which is hard for us, since we can't plan anything. Katy's stubble has mostly fallen out, leaving smooth shiny skin on her head. It doesn't seem to bother her too much, and she has really gotten a nice collection of hats from the nurses and friends. I really miss my other two kids...they are staying at their grandma & grandpa's house about an hour away, and I've only seen them briefly, twice in two weeks. I LOVE YOU SARAH & SETH!!
July 12th 1998
Yesterday was the one year anniversary of Katy's diagnosis with Aplastic Anemia....also known as D-day. We have been through alot in this past year, and Katy's illness has changed our lives forever. We have had to sacrifice alot, but we have also learned ALOT and been blessed in many ways we never thought possible. We have met some wonderful people that we might not have known otherwise, and we have solidified friendships with very special people, who were already a part of our lives before Katy's illness, but who have been very selfless in their attempts to help us through this. So....even though I remember in vivid detail that awful day, when the docs outlined what our baby would have to go through, I am grateful that she is still with us, still keeping up the fight.
July 16th 1998
Katy's fever has FINALLY resolved today, and we are keeping our fingers crossed that things will begin to stabilize. Her cultures are still coming up negative, and we've been moved to a new room. Her docs are still considering a transfer up to Chicago, because Katy was scheduled there for follow-up anyway, but since she's still profoundly neutropenic, it will need to be an ambulance transfer and an inpatient follow-up.
Keep up the prayers everyone....we think they're working!
July 22 1998
Katy was finally discharged today after nearly a month in the hospital, but she is still very neutropenic. She has yet to recover any BM function nearly 5 weeks post the end of her Cytoxan therapy, so her docs have hinted that it might be time to start exploring transplant options. This, of course, scares the living daylights out of us...but we will do WHATEVER we have to.
We are tired, but have not lost our determination to get our little girl well again. If your the kind of folks who believe in a higher power, could you please appeal to him/her on Katy's behalf? Thanks.
July 27th 1998
We're FREE!!! Katy was finally released from the hospital after ONE month of "incarceration" with one 24 hour pass thrown in.
We were all surprised to see her ANC come up today, despite a positive blood culture for a gram positive bacteria. We are infusing IV meds at home every 8 hours, but if this is what it takes....we'll do ANYTHING to stay out of the "slammer!"
August 8th 1998
Only GOOD news today!! Katy's marrow is showing some small signs of recovery, although it's unclear if it's the growth factors or actual marrow function that is causing her counts to slowly rise.
She is still out of the hospital, doing home IV meds, but is otherwise happy. Again, we are living from CBC to CBC....which is "hairy" at times. Her next appointment for counts is Tuesday, August 12th, at CMH in Chicago. If her upward trend continues, we will FINALLY be allowed to go home to Fisher. (We are currently staying at my parents house in Kankakee, which is closer to Children's in Chicago.) It seems as if we haven't been home all summer, and I guess we haven't! School starts up in a few weeks, and it's still unclear as to if Katy will be allowed to attend. If she can't, she'll be heartbroken. She's the kind of kid who LOVES school and social interaction, and I think this attribute has been heightened by the fact that she has been isolated for the better part of a year. Thanks to all of you for your prayers and concern.
August 13th 1998
We spent the day back at our old "haunt" (Carle Hospital), getting both a packed red cell transfusion and a platelet transfusion. As sick as this may sound, it was really good to be "home" at Carle. We really missed all our "second family" members, and it was good to see everyone, even if we didn't get out of there until 9:30 p.m.! Anyway, after we were done, Katy & I made a trip to the grocery store. It was really the first time I've had her "out" in public since she lost her hair. For the most part, people are very nice and smile politely or engage her in conversation, but you know how they say that one bad apple can ruin the whole bunch? Well, we were heading out of the store when Katy told me she wanted to ride the motorized pony. I said yes and gave her a penny. She hopped up on the horse and dropped the penny in, and then removed her hat, showing her shiny, bald head. That's when I noticed two NASTY teenage boys staring and whispering. Trust me, I was NOT being sensitive....they were so OBVIOUS about staring at her, I was immediately so enraged that I just wanted to slap them silly. Must've been that "mother tiger" instinct, but MAN was I pissed! Of course, Katy was oblivious, just happily riding the pony, so it was ME that was affected not her. Anyway, I just collected her, and walked out, glaring at these little @#!%%^!'s the whole time. Really....I mean, what is this world coming to? Sheesh.
(Okay...stepping down from my soapbox now!)
August 20th 1998
GOOD NEWS TODAY!!! Her "numbers" at the clinic were great (check them out on her current status page)...and we only stayed for platelets because she is getting her teeth cleaned tomorrow.(We want them all nice & shiny for school don't we?) Our new puppy Riley arrived, and he is beautiful! He's a black & white cocker...very laid back and quiet. So, overall, it's been a pretty darn good day.
August 28th 1998
Katy has started kindergarten, and is doing very well. She just LOVES getting away from me for a few hours each day, and I am LOVING my few hours of peace and quiet. We went to clinic yesterday, and I was a little bummed about her counts. I had expected her RBC to be a little more stablized, but it turns out it was quite low, and she needed a unit of packed red cells. She also has low platelets, and we'll be returning on Saturday to get those. I guess yesterday was just a plain yucky day. When we went up to "the floor" to visit our favorite nurses, we found out that "baby Josh" had died. Josh was a little baby in the PIMCU unit, who had alot of problems from beeing a preemie, and had spent all of his life in the hospital. It made Katy very sad to hear that he had died, because we spent a long time in the room across from his. You could never hear him cry because he was on a ventilator, but he was very cute and animated otherwise. Bless his little heart. He'll make a special angel. ;-( Sniff......
August 31st 1998
Yucky stuff today folks. Katy went in for a count check, and I was positive she would need platelets. She is VERY bruised up, and her petichae are now MORE than merely "scant." She doesn't have any active bleeding yet......but we are expecting her gums to bleed any time. Her platelets came back 4k, (which was actually surprising.......I expected them to be zero) so we went over to the expanded care center to get some platelets. This is our routine. Katy has had well over 50 platelet transfusions, and never, ever have we had any problems. Guess what? The blood bank calls....."We are So sorry, but we don't have ANY O positive, CMV negative platelets.....we can try to call a donor and have some by tonight, or get some from another blood bank." Hmmm, what to do, what to do. I might also mention that there was a really sick kid also in attendance at the Expanded Care Center (he was barfing and had a high fever) and I REALLY wanted to get Katy out of there ASAP! So....we de-access her port (which bled for a loooong time) and head off on our merry way....and she STILL looks yucky! They are going to try and procure some platelets tomorrow, and if she's bleeding we'll go in then, and if she's not bleeding we will try to stretch it out until Wednesday. I HATE this!! Having her platelets this low makes me VERY nervous that she will have a brain bleed, maybe in the middle of the night, and I won't know it.
Any of you fabulous docs know how likely this is? I talked to a woman at the AAFA conference whose daughter died in middle of the night from a brain bleed, so I guess that's why I'm so darn (I WANTED to use a much stronger word there!) nervous. I guess I'll just say a BIG prayer and check on her every hour tonight!
September 14th 1998
New problem....Katy has a high "Serum Ferritin" level.
Katy's high SF level indicates is that because she has had so many Packed Red Blood Cell transfusions, she how has a side effect of this called hemachromatosis...or iron overload. It appears that we will have to start chelation therapy soon. Chelation is the method used to rid the body of the excess iron that has built up, which if left in the body can cause MANY problems such as heart disease and liver failure. What we will need to do is to slowly and subcutaneously infuse a medicine called Desferal into Katy's body 5 days a week for 12 hours a day. The medicine will bind with the excess iron and then be eliminated from her body.
I'm not sure if her port will be used for the infusion, or if we will have to insert a new sub Q needle into her tummy each night. I'm a "newbie" at the chelation business, so that'll just be ANOTHER thing my hubby & I will have to learn how to do. Ugh. But, alas....life goes on......
October 2nd 1998
So...the verdict. Did the Cytoxan work? WE DON'T
KNOW!!! Many of you who know me.....know that I am a full blown control freak. That has been what has made Katy's illness so difficult for me. I have had to realize that I am NOT controlling this...and quite frankly, it sucks. We don't even have a clear picture about where we go from here. It's
frustrating, because SO many people are asking me..."How is she? Did the chemo work?" and I just don't have the answers. I'm sure people are getting weary hearing "We don't know yet", and "It's hard to tell at this point". People (the general public) are SO used to "getting sick-taking medicine-getting well", that most people don't realize that recovery from a life threatening illness can take months, years, or even a lifetime. Some people don't understand that what defines the word "recovery" is "able to live" but certainly NOT what most folks consider a normal life.
I'm not sure where we go from here. I guess I'm just realizing that our lives will never be "normal" again. The train has derailed, and getting her back on the tracks will be a long and hard process, and even once she is back on the tracks, we're headed off in a different direction than we were before. And
we're uncertain about where we'll end up. That's what so much of my frustration hinges on......uncertainty. Katy of course....is happily oblivious to everything...and if she had her choice..she'd stoke the coal and go "FULL STEAM AHEAD!" That's just her nature. Maybe I could learn a few
things from this kid!
October 14th 1998
Now, I promised I was going to quit obsessing about her counts and start to judge her well-being more by how she looks & acts. I have to admit though...that she looks pretty bruised up. Our beautiful fall weather (70 & sunny) has made for lots of outside play, and her rather generous red blood cell count (Thank G-d for Procrit) has meant that she is full of energy & pep. We Met her class on their field trip today after our clinic visit. After the park & lunch, we headed out to a really neat Apple Orchard, where they have fun things for kids to do, like mazes, watching applesauce & cider being made, jumping into a bale of hay (I whinced when she did that!) , and feeding baby goats & bunnies....that sort of thing. I must've been the only mom that followed her kid around with a bottle of hand sanitizing gel and kept squirting her hands. Everyone there must've thought I was the queen of anal retentiveness, but Lord only knows what germs those animals have in their mouths, and they were licking feed right from Katy's hands. I'd say I was doing pretty well to even allow it.....aside from the fact that I made her sanitize her hands about 20 times today! Of course, she completely passed out in the van on the way home. Can't say as I blame her though...I felt like passing out. Did I mention that I am
planning on nominating her kindergarten teacher for sainthood?
Katy's next clinic visit is scheduled for Monday, if she can hold out that long. I'll watch her all weekend for bleeding, but am hoping that we will catch a break and be able to hold out until next week.
November 9th 1998
I can't believe I haven't written here in nearly a month!! My apologies to those of you who check back often. I've been busy with other projects and of course running Katy back and forth to the clinic & hospital. A lot has happened since last month. Firstly, there were two great fundraisers put on in Katy's honor. Some local Junior Girl Scouts put on a Chili Supper benefit and raised quite a tidy sum. Thanks so much girls!! Secondly, our church had an absolutely fabulous chicken dinner. It was really neat....people bought tickets, and then drove through our church parking lot to pick up their chicken dinners on a Friday night. They hired a really neat catering company that set up in our church parking lot and grilled the chicken. It was a huge success. Unfortunately, Katy was at the hospital getting a platelet transfusion during most of the event..but we were able to swing by afterwards and taste the yummy chicken. THANK YOU SO MUCH members of Emmanuel Memorial Episcopal Church, and especially Paige, Brenda, Pat and all the volunteers.
As far as Katy's treatment goes, unfortunately, she is still pretty much transfusion dependent at this point. Her Epogen dose has been increased to try and keep her red cell transfusions at an absolute minimum, because she is approaching iron overload. She is still getting regular platelet transfusions, because her platelets bottom out at about 5k or less about every 10 days to two weeks. Her white count has been pretty good, so her doc elected to withdrawl her GMCSF (white cell growth factor) and see if they will stay up on their own. Her last dose was Friday the 6th, and her next set of counts is Thursday the 12th, so we should have some idea by then if she can manage to make any white cells unassisted. Katy, David & I will be heading up to Chicago on the 19th of this month to discuss the direction of her treatment with her Hem/Onc Docs, and we'll know more then. For now, we are just focusing on having a nice holiday season. Happy Holidays Everyone!
November 19th 1998
Katy has been classified so far, as an "incomplete responder" to her Cytoxan therapy. This means that the Cytoxan clearly helped recover her white count, but may or may not have had any effect on the other cell lines. They went on to say that it was their belief that her chances for a complete response at this point were slim. So.....we began to hammer out our game plan. We are going to proceed very slowly in planning a BMT for Katy. Her docs in Chicago are in the process of contacting a doc in Houston, Texas (Baylor College of Medicine) who has published a study that boasts a very good success rate at transplanting children with a history of EBV associated Lymphoma. What they will do is to find Katy a donor that has also been exposed to and (presumably has antibodies against) the Epstein-Barr virus. Then, along with donating his or her marrow, the donor will also donate some blood from which they will separate out those EBV specific lymphocytes to give to Katy right along with the marrow. It the 39 kids determined to be at high risk for EBV Lymphoma that were transplanted, only two of those kids developed the Lymphoma, and those remaining two experienced complete remission after multiple donor lymphocyte infusions. So......this is exciting news! This improves Katy's chances for survival and cure with a BMT considerably. Like I mentioned before, we will proceed VERY slowly to the BMT, just to give the Cytoxan one last chance in case it makes up it's mind that it would like to work. The earliest she will get the BMT looks like spring, although we may fly down to Houston before Christmas to have a consult. Looks like the transplant will take place at Texas Children's Hospital. Anyone familiar with it? I've never been to Texas in my life....should be interesting. Knowing all this, we are going to try and plan a VERY low budget trip to Orlando and Walt Disney World in January or February. Kinda like a "last family fling" before we are separated for a long (100 plus days) time. Anyone have any tips for a majorly cheap excursion? Leftover Disney passes? (Hee Hee....thought I'd try!)
November 25th 1998-Happy Turkey Day!!
As expected, Katy got her 61st unit of donor platelets today, which brings me to what we are thankful for. This Thanksgiving, we are most thankful for the selfless people who give of
themselves in the form of blood and platelet donation. They have clearly been Katy's heroes. This child would be an angel in heaven if it weren't for a very special group of people who take the time out of their busy lives to donate the blood products that keep her alive. God Bless them. Amen. We are also very thankful for our Church, Family & Friends who have supported us emotionally, physically, spiritually and financially this year. I think it's reasonable to say that these folks are entirely responsible for keeping David and me sane throughout this insanity. No WAY could we have done it without them. We are thankful also for an excellent medical team that goes beyond the call of duty in taking care of Katy. They care for her spirit as well as her body. We love them like family. Lastly, we are thankful for this FABULOUS little gray box that keeps us in touch with all of YOU! I can't even begin to imagine what our lives would be like without all of our very special cyberfriends. We love you all.
December 11th 1998-Happy Holidays!!
Got the phone call today from our case manager at the insurance company, letting us know that Katy's bone marrow transplant was approved in Houston. Many of you might be wondering why we need to travel such a distance from our home here in Central Illinois, when there are many excellent transplant centers close by. Even our insurance company preferred that we go to Minneapolis, but after a week of negotiating they agreed that Houston was Katy's best shot at a good outcome. Let me explain. Katy is considered to be at high risk for EBV Associated Lymphoproliferative Disease post-transplant. (She is one of only two documented cases of it in a child who was NOT transplanted...) So.....in an attempt to minimize her risk of recurrence, Katy will also be given multiple EBV antibody positive Lymphocyte infusions as a prophylactic measure along with the BMT. This means that along with marrow, her donor will need to give up a few units of blood from which they will separate out the lymphocytes for Katy to receive. They have had excellent results using this strategy at Texas Children's, so we are very hopeful about the procedure. December 23rd 1998-Happy Holidays!!
We had a wonderful day today, and our "star" Katy once again shone very brightly here in Central Illinois! Do you all remember the "human interest story" I told you about last week? The short of it is that one of the VERY dedicated blood and platelet donors in our area is a man named Jim Vleet who happens to look EXACTLY like Santa Claus. (To us...he IS Santa!) Jim has donated over 30 Gallons of whole blood and platelets, and the wonderful folks at our local blood bank and I cooked up a great idea last week. Today, Jim (dressed as Santa) visited Katy's school, and she got to meet him and thank him for his very special gift to her. And guess what? BOTH major local news affiliates showed up to do a story....and THEY WERE WONDERFUL! Real tear jerkers!! Katy of course, smiled, hugged and thanked right on cue, and very seriously explained to the reporters exactly HOW she receives donated platelets. "First you go to Dr. Becks office......then you get a needle in your chest. Then, they use a pump!" Toooooo cute. The stories both aired tonight at 6, and they will be repeating at 10. It was a wonderful "plug" for blood and platelet donation, especially during the holidays and "icky" winter weather months when supply often runs short of demand. Of course, Katy also seized the opportunity to sing "Jingle Bells" and "Santa Claus is comin' to Town", and make absolutely sure that Santa had heard her gift requests. Geez........now I gotta go out tomorrow and look for that "Super Nail Creations!!!" Ugh.
January 4th 1999-Happy New Year!
It's becoming clearer by the day (DUH Mary....how long were you planning on living in denial?) , that a BMT is probably Katy's best option. She is now nearly 7 months post High Dose Cytoxan for her Aplastic Anemia, and is classified as a "partial responder," since the Cytoxan (may have) helped to recover her rather pitiful but livable white count. Her red count is still supported by 3x weekly Epogen, and her platelets are obviously supported by nothing! Nada.....zilch! Anyway, considering that we are in for more bad weather, and we live in rural area 25 minutes from the hospital, Katy got her 64th unit of platelets this afternoon. The questionable part is that the donor platelets that she DID get were about to expire, (they had no "fresh" platelets for her at the blood bank because of our ferocious winter storm here in the Midwest that stranded all our donors!) and they probably won't last very long, hopefully a week or so. Our plans for the BMT are becoming a bit clearer. We are planning our Disney vacation for January 31st through February 6th, and then Katy & I will probably head to Houston around Feb 15th. We plan to be there for about 4 or 5 days prior to her chemo admission for baseline tests and a central line switch. (Katy has a single chambered Mediport, and she'll need an "upgrade" to three access lines...but I'm unsure about what kind she'll get.) Then, she'll be admitted for a week of chemo, a day of rest, and then the day of miracles......her BMT. And honestly, I know how hard the BMT will be on little Katy's body. She is such a tough little kid! I think I'm MORE worried about the logistics of being SO far away from home for SO long! I will miss Sarah, Seth & Dave terribly, and I'm sure Katy will too. Keep up the prayers!
January 12th 1999
As our Disney trip approaches, our house is brimming with enthusiasm and anticipation. The kids can hardly wait, and I have to say that considering our AWFUL weather here in Illinois, I am looking forward to it more than I had imagined.
Thanks SO much to all of you who replied to my "Big Stroller & Blankie issues" note, you were all VERY helpful, even though I didn't have time to reply to each of you personally. As it turns out, Katy will be allowed to have her blankie during the transplant, as long as I wash and sanitize it and seal it in a plastic bag, not to be opened until we enter "the room". I am considering contacting the wonderful nurse who originally made Katy the blankie, and asking her to make another, so that we can rotate them in case one gets soiled. That way, Katy will always have a comfort item. My feather pillow? A BIG no-no. I cringe at trying to sleep without it, but I'll probably be so exhausted from lack of sleep that I won't "need" it too much. Let's all just pray for nice, firm pillows at TCH in Houston. As for the stroller issue, I am happy to report that $109 dollars later, our problem is solved. We found a three wheel jogging stroller (THANK YOU DAWN!) that fits Katy MUCH better and maneuvers nicely, and folds down. It's perfect. Her counts today continue to point us towards Houston and the transplant. (There goes that "denial" rearing it's ugly head again! I once had a good friend whose motto was "Denial.......it's MORE than just a river in Egypt.")
January 19th 1999
This will be my last entry in this Journal, as I am continuing on a new page called "My BMT Journal".
The new journal will chronicle the newest phase of our journey and help to shed some light on the process of bone marrow transplantation for all our friends and family who visit the site. Katy got her 65th unit of donor platelets on Monday, and her health continues to remain stable as long as she receives supportive care. Thanks to all of you out there in cyberspace who have paused to read this journal and get to know Katy. Your continued prayers are appreciated!
Check out the weather where I live today!
Just click on the weather picture!
We had a mid week ER visit for what turned out to be only a bad case of croup, but they ran counts which came back so good, that for a minute (okay, really, a day) my heart sang and I was beginning to wonder if she needed the transplant at all. Unfortunately, the specimen was mishandled, allowed to clot, and the results of the CBC were totally inaccurate. Damn. I should've known better than to believe that her Hgb was 12.7 and her ANC was 2500!
So......there you have it. She was pretty bruised up, and had a lot of "tiki eyes" (as Katy says) in strange places, including on her ears, and got a couple of nosebleeds this morning, so she was the lucky recipient of her 63rd unit of donor platelets, which will hopefully carry her through 'till Christmas. Speaking of Christmas, I wonder if Santa could bring us some new marrow? You know what's funny? One of Katy's platelet donors looks exactly LIKE Santa!! I kid you not! We met him at a donor recognition banquet last spring, and he brought a big candy cane for Katy. What a sweet guy, he has undergone apheresis 109 times (probably more since then) and since he & Katy are the same blood type, we're pretty sure that at least a few of the many units Katy has gotten came from Santa. Now that I think about it.....that would make a REALLY cute human interest story!
Looking at Katy this afternoon, I'm awfully glad they taped those stories this morning. Her neck has a huge, ugly patch of "tiki eyes" this evening, signaling to us that it's a good thing that we have counts tomorrow, and that we plan on getting tanked up with platelets to last us through the Christmas Holiday.
I'd like to take this opportunity to Thank each and every one of you for all your loving support and encouragement this past year. 1999 dawns with new hope for us. Hope for a successful Bone Marrow Transplant and cure for Katy. We will never forget all the people who prayed, and joined in our struggle to save Katy's life. Keep up those prayers......she will need them. And to the parents of all the "Angels", we will pray for God's peace and healing for you. Happy Holidays to you all. And to those of you leaving treats for Santa this Christmas Eve.......please consider leaving him a slice of Turkey along with those cookies. A friend of mine has a theory that turkey stimulates platelet production......and Santa could use all the help he can get. He's scheduled for apheresis again just after the New Year!
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