Sunday, May 2, 2004 10:55 PM CDT

THANK GOD FOR FLU SHOTS!!!


I called my brother’s house tonight.

My sis-in-law answered the phone and we began talking for a “small visit”.
In between our words of updating each other on happenings and the past week’s adventures, we both had to interrupt ourselves as our young children within our households were requiring immediate attention.

I was smiling to myself.
I was smiling because I could hear her on the phone, fussing at her children jumping on the bed. And here I was, fussing and pointing at Madie to stop doing the same thing! Seems both our households were getting children ready for the bath and bedtime at the exactly the same times!

I was smiling and really quite happy, thinking “How normal is that!”
What a super-great surprise to be handed before the start of a ‘nail-biting’ week of apprehension, dread, and even downright cliff-hanging—anxiety...kinda like a ‘last episode’ of a television series going into Summer Break that keeps you at the edge of your seat!
You see.....Madie has her 3-month Spinal Tap this Thursday at 8:30am. They are always an adventure of some sort...a roller-coaster ride to me....but that's another story!

Hanging up the phone, I was thinking….”Goodness, how long a time it has been since I felt ‘normal’?
Even if it was just for the seven brief minutes that we talked, it was a great reprieve and an immensely thirst-quenching bit of ‘normalcy’ that I will keep in my soul for the week!
Thank you guys!

Normal…..of course, I know everyone has a different kind of ‘normal’.
I know what use to be my ‘normal’ life. I have a ‘new normal’ now. My ‘new normal’ life is filled with all kinds of things that most all other families with young children will never experience. Because of this Cancer Leukemia, lots of the things are bad, but there are some great highlights that stand out among the battle-fatigued days and nights.

Another telephone call I had this weekend was with a representative of the U.S. Government. She was a very nice person, collecting data for the State and the CDC (Centers for Disease Control) here in Atlanta. She had called me earlier in the week, but I was at work, so she had left a message that she was collecting data for the CDC and had a few questions that she needed to ask me. I had called her phone number back on Friday night after coming home from Madie's sick visit to see Dr. Deganian. I had left her a message with my work number, but here she was calling on Saturday afternoon! She introduced herself and explained that she was working on the weekend so as to reach folks that worked during the week.

It seems as though Children’s Healthcare of Atlanta at Scottish Rite had reported to the CDC that Madie was hospitalized this past winter (at the end of December) for the flu. She asked me if Madie had received the flu shot, when did she receive the shot, what were her symptoms and how much time had passed from when she had the shot to when she was actually hospitalized. I provided all the answers that she was searching for, and then true to my “Business Analyst” brain, I contributed additional information for her study that was truly ‘noteworthy’.

I explained that Madie has Cancer Leukemia and that because the flu virus can kill her, she was given two flu shots. I emphasized (repeatedly) to her that the flu shots actually saved her life.

Now….I can hear everyone asking me…..”C’mon! How do you know the flu shot saved Madie’s life? How can you prove something like that?!”

I know because there was a little boy who had the flu and actually did die this past December.

His image is burned into my brain.
If I close my eyes, I can see his face.
But mostly, his big, brown, scared eyes….staring out at me from above his oxygen mask.

It was Sunday evening, the week of New Years.
Madie and I were walking down the hallway at Children’s Healthcare of Atlanta, Scottish Rite. We had just left the ER where I had been given the awful news that Madie tested positive for the flu and therefore could not be taken upstairs to the AFLAC Cancer Center and Blood Disorders floor. She was too contagious and they could not risk lives of other cancer patients. Madie has never stayed anywhere else but in the third floor wing, so this was a new adventure for us. I had all kinds of concerns running around through my head and was just blindly following the nurse who was pushing Madie in her wheelchair.

Now remember, this was during the height of the flu season and it had reached epidemic proportion here in Georgia. News reports each night contained information about the flu, how horrible it was affecting children this year, and the number of deaths kept climbing!
And now.....I was just another passenger on this run-away train---I felt helpless as I could see it about to collide with my little Madie girl!
I felt like my feet had turned to stone and each step was almost too heavy to take.
I kept hearing all the warnings about Cancer Kids----don't let them get the flu----it's horrible for them and it can (and does) kill them!
I was re-living my worst nightmare!
My child's life was in immediate danger....again!

In defense of the epidemic, Scottish Rite had setup their entire first floor as the ‘FLU FLOOR’ and Madie was being taken to a room on that floor. I was told it would be a private room, to protect her immune system from other contagious diseases that could be on the floor.
Madie’s nurses were being told that she was ‘reverse isolation’, meaning that they wore the masks, gowns, gloves, and plastic guards upon entering her room so they would not carry anything harmful to her from other rooms they may have visited.
You see, Madie’s white blood count was at zero, her ANC was zero, her HGB was at 6.3 and she was in dire need of a blood transfusion. She had no defenses to even start a fight.

The battle with the Mightly Flu had begun.........

Now remember, I’m a Business Analyst and in my ‘super analyst brain’, I notice EVERYTHING! And, as we turned the corner and entered into the first floor wing, I became aware of very, VERY, V-E-R-Y sick children.
Sick children were everywhere!
You could hear them coughing and crying through the closed doors!
You could hear the sounds of a thousand machines, all going at once!
It actually took my breath away----I stopped breathing for just a second.
Madie was wearing a face mask, but my gut-reaction was to lean over to adjust it---I think it was mostly just for my own piece of mind.
When I looked up, we had just started to pass a room on the right. The door was open and I saw a little boy about 9 years old sitting up in the bed. He was very thin. His mom was sitting next to him, with her back to the door. She was talking to a nurse who was in the room.
He was coughing and his whole body shook. His coughing stopped and he turned to face the door. Our eyes met out over the top of his oxygen mask.
He was very scared. And I remember that I thought he looked very, very sad for some reason. I smiled.
I kept following our nurse down the hallway.

Once Madie was settled into her room, I ventured out into the hallways to find the ice, the drink machine, the kitchen and the way to the nurse’s station.

I asked for directions to the ice machine and cringed when I was told it was in the pathway of the little boy’s room that I had met, but actually didn’t meet.
I was so relieved that the door was closed this time, but I could still hear the machines beeping and could distinguish his cough above the television that was turned up pretty loud. I hurried over to the ice machine, secretly praying that I could get back to Madie’s room before the door would open again.

That first night on the floor was very chaotic. When an alarm sounds, you can hear it several doors away. And calls go out across the intercom non-stop. There are intercoms in the hallway, plus those in her room. It was heartbreaking to hear the calls...constantly.

This was the thick of the battle, in the trenches.....and the Mighty Flu was winning.

It was also the most horrible hospital stay that I could ever imagine for Madie.

For whaterver reason, right after the blood transfusion that Madie had received, something went terribly, terribly wrong. Her stomach swelled up as big as a basket-ball and her skin color turned orange. Her eyes turned yellow and when she went to the potty, nothing but blood was coming out!! I was freaking out---but trying not to freak out Madie!

Immediately, tests of all kinds were being done and she was being monitored every 30 minutes by the nurses on the floor. Several tests (and hours) later, I was told her liver was in trouble and things were looking kinda bleak! The cause was unknown, but it was suspected to be the flu virus. Rampaging inside her body. Madie was terrified from what she was seeing happen to her and I was petrified by what “could” happen to her! It was a nightmare!!!

The battle with the Mighty Flu had intensified for us.
And the Flu was winning.

The next day, I passed the little boy’s room several times on various errands. There are curtains on the doors and windows so that the parents, doctor’s and nurses can close them for privacy. At times, the curtains were open, but mostly they remained closed, as was the door. I had glimpses into his room and saw nurses rushing in and rushing out. He had new machines, all hooked up. I knew he was in very, very serious trouble.
But so was my little Madie.
They were both fighting, tooth and nail, to survive.
And it was apparent to anyone that the Mighty Flu was winning.

Now, I always look for the best in any situation.
Regardless of what’s happening, there has to be a brighter side to anything!
In my “Severe Analyst Brain”, I was scouring all the facts for any shred of hope or ray of sunshine.
With all the worries about Madie’s liver, I had mentioned to her nurse how relieved I was that Madie had the flu but didn’t have the chest congestion as well. I told her how scared I was every time I left Madie’s room because I could see and hear how horrible the flu had struck these defenseless children that were all around us.

The nurse said the flu was very bad this year and that she had not seen it quite this destructive before. She said they were hitting it hard with all they had and that I should be very thankful that Madie got the flu shot. It was her opinion that the flu shot was preventing the pneumonia they were seeing in the other kids that didn’t get the shot.
I secretly ‘thanked’ Nurse Mary for sneaking in and giving Madie’s those flu shots after her LP’s, even if Madie did get very, VERY mad her! (Thank you Nurse Mary!! Your an Angel!!)

At one point, Madie’s doctor’s had come by to check on her and mentioned that she was doing great and holding her own. They had been flushing her liver with tons of fluids, but, I think he was actually referring to her fevers that were coming down and lack of chest congestion from the flu virus. One of them said that for the first time, the Cancer patients that had been diagnosed with the flu were actually fairing better than the kids who didn’t have Cancer. His personal opinion was that the flu shot was saving their lives.

Here was another professional that said the flu shot had saved her life!
Wow!!
A shot…..that actually saves your life?

That third night at the hospital was another blur of alarms, beeps, cries for help and the intercom constantly reminding me that someone else’s child was critically sick.

The very precious 9-month-old girl in the room next to us was whisked away to ICU in the middle of the night. She had only been there about 6 hours. I said a silent prayer for her as I could hear the nurses, doctors and her dad. She too, had the bad cough.

I know of her because her mom had called Madie's room earlier that evening. They are an Asian family and she was speaking very broken English. She was frantic, trying to locate her husband and find out about her daughter---she couldn't come as she had to work. I hung-up the phone, going over to ask the Daddy to call his wife as soon as possible with any news. I noticed that he had the same scared look in his face as I know I must have had when Madie was first admitted. It is a look of shock, disbelief, fear and helplessness. He was very grateful to me that I had spoken to his wife, had helped to calm her fears about her baby girl.

The Mighty Flu does not care what color your skin is, what language you speak, or how old you are. It only wants your life....nothing else.

The next day was a bit brighter for Madie. Her liver enzymes were coming back down from the 22-23 that she had been (normal is 1 or 2).
Her fever was coming down.
Sadly, her blood counts were not going up, which was a little disappointing. Dr.B said it would get worse before it got better (little did he know!—or does he have a crystal ball somewhere????) and I remember him saying that sometimes the Cancer Kids stay in the hospital for two weeks with the flu……..Two weeks!!!! TWO WEEKS!!!!
YIKES ALMIGHTY!!!!
I know I hearing his words, but they were not being processed in my brain! I know he didn't just say "TWO WEEKS!!"

Death is around the corner, walking the halls, and standing in Madie’s doorway!
He has his hand on the door-knob, but then, he hesitates.
He turns and walks away...to another door maybe?
It is intensely gut-wrenching...much more scary and heart-pounding than any horror movie could conjure up! Because it's real?
I remember thinking, “I can’t take two weeks on this floor! We have to get out of here!”

I also remember on that next day, when I came back to Madie’s room with my breakfast from the cafeteria, I searched for the little boy that I had been watching all this time.
There were several children whisked away to ICU during the night before.
Was he one of them?
He was no longer there. All the machines were gone. His room was vacant.

I knew he could not have been discharged.
I knew he either had to be in ICU, or, had he fallen prey to the horrible Mighty Flu?
I prayed and prayed that he was in ICU.
But even in the Intensive Care Unit, there is no "silver bullet" that can fell the Mighty Flu. All of us parents know this.
It's microscopic...it's silent....it's deadly.

I prayed all day long, but in my heart, I knew he wasn’t here.

Later that evening, I noticed that Madie’s charge nurse was still working late into the night.
It was very strange to me…….she was to have left earlier, but here she was, still working and running errands.
I spoke to her as I had not seen her at all that morning, but here she was….still working at 9:00pm!

I knew she could tell me about the little boy without even telling me anything...and especially if I didn’t want to hear it.
I spoke to her, quietly inquiring 'why' she was still here at the hospital. She told me that it had been a busy night, busy morning. They had an emergency that she needed to do paperwork for and that had taken most of her time that day. "Charts and stuff....you know how that goes."

Of course, I instantly understood. She had a broken spirit. One of defeat, at the hands of the enemy.
One I had seen before, back when Madie was in the hospital in September. A little boy had earned his Angel wings that late afternoon on the second day after Madie had been admitted to the AFLAC Cancer Center and Blood Disorders wing. He had ALL Cancer Leukemia, just like Madie.
All the nurses and doctor's had a broken spirit. I could see it in every one of them---they didn't have to speak. The sadness is very thick.

Without saying the words, I knew that the little boy I had met, but never actually met, had earned his Angel wings and was in Heaven.
And it didn't matter if it was him or not, it was someone's child that had left this Earth that day.
I got back to Madie’s room and just hugged her tight.

I thanked God again for making such smart people that could invent something like a Flu shot!
Thank you God!

I thanked God again for making such wonderful people like the nurses in the hospitals who take care of our helpless children.
Even with broken spirits, they continue on and do not give up!
Thank you God!

I thanked God again for making such wonderful doctor’s who help take care of our helpless children and keep trying, no matter what, to save their life!
Even with broken spirits, they continue on and do not give up!
Thank you God!

It is soooooo easy to give up---

I promise, I will never give up.
I promise, I will never let Madie give up.

....And one final promise....
I promise that we will both get flu shots every year!

Thank God in Heaven for flu shots!

Monday, April 19, 2004 11:35 PM CDT

Well, it’s been quite a week for Madie!
And quite a week for me, too!

Last Monday, I drove Madie up to the clinic for her monthly treatment of Vincristine.
Madie has a nickname for it---she calls it that ‘mean ‘ole Christine’ medicine or sometimes it’s ‘very mean Christine’. I think it depends on how it treats her that week!

This past week, it was “very mean Christine”.
Christine does not *play* and she *takes no prisoners*.

In the past year, the “very mean Christine” has damaged Madie’s little body so badly that she exhibits very rare side effects that are not normally seen in most Leukemia patients that receive it. I know it is a great defense in the fight against cancer, but like all the chemo, it comes with a high price to pay (and that’s not just in US Dollars!)

In the beginning, when she was getting high amounts both IV and ITX (spinal tap), she started out with high fevers and lots of joint pain. The high fevers tapered off a bit and have become very predictable “low grade” fevers. Those fevers begin within 12 hours of the administered dose and last for the next 72 hours.

On the days that the ‘very mean Christine’ shows up (without an invitation), Madie gets the very sharp hot pokes, like fire-hot needles poking into her just under the skin. The worst time came one night, around 5:30am. I woke up to a picture of my child screaming at the top of lungs, clawing at both her ankles and lower legs, hot tears streaming down her cheeks. She kept screaming at me “My legs are on fire! My legs are on fire!”

Now, I don’t mean to brag, but I have developed a gut-reaction reflex over my 24 years of parenting which is instinctively “knowing” how to access the situation within 1-tenth of a second and execute an action plan with extreme precision that a Swiss watchmaker would be envious of! (If I must say so myself!).
In that 1-tenth of a second, I accessed that Madie was in severe pain, she felt her legs were on fire, she might be having ‘Night Terrors’ as she had them before, I felt around in the bed in the dark and saw no signs of body fluids that could be the culprit, (ie...blood gushing from a wound, potty accident or nausea) and I saw no ‘fire’ in the bed nor bugs of any kind. My trauma-room triage decided that a very cold, wet towel to the afflicted area as fast as possible would be the first-aid of choice, followed by ice, or whatever else would be needed upon a closer, more in-depth investigation once she was beyond this initial extreme pain.

In one fluid motion, I leaped off the bed, raced three steps into the bathroom, grabbed the closest, largest towel, and threw it in the tub while turning on the cold water. In my 'analyst brain' I registered the fact that it was one of the very few "new" towels that I owned, while giving no care to how it was going to end up looking after Madie was finished with it! In one second, I had that towel wrung out while racing back to the bed, not caring what got wet or what the heck got in my way! I slapped it across both legs, covering as much of the raw skin area as possible---all the while speaking very calmly over her hystical screaming with words like “Shhhhh! Honey! It’s okay! It’s okay! Mommy’s here! It’s okay! I promise!”
Only when her screams subsided a bit did I feel around behind me for the light switch. I flipped on the light to see what was going on….......
That night, she needed ice, Tylenol, juice, a back rub, the Disney Channel and lots of conversations to remind her that she is home, safe.

After describing the episode to Dr.B, he explained to me how the evil Vincristine works. He said that the nerves and tendons in our bodies are connected to the bones. These connections are like a common electrical wire, that has a plastic vinyl coating around wires running along inside of it. The Vincristine eats away the plastic coating of the wire and exposes the hot, electrical wires that are underneath. Hence, the sensation of the sharp, hot, burning pokes!

YIKES!!! That sounded totally terrible!!

But the ‘very mean Christine’ gives Madie so many different side effects. I try very hard not to point out any of them or dwell on any of them with her, but I do notice them. I surprise her with her medicine as appropriate if I see her struggling with fevers or pain. Or....I make her change her shoes if I see her having problems that her selection for the day (or hour!).

Ahhhhh!! Yes! The shoes!

Now, Dr.B knows very well that Madie LOVES her shoes! She is lovingly referred to as the ‘shoe queen’ by her brother Rhyne. Her Aunt 'Re has been quoted as saying "I've never seen any one person have so many shoes!".

Emelda Marcos has nothing over on Madie Rylee!

Actually, Madie loves to dress up and wear the shoes that match her outfit—so it’s kinda like an unwritten rule of fashion. She is making a fashion statement and will not bend her will (unless made to!) to that horrible “mean Christine” medicine!

But, lots of times, the “very mean Christine” has her say in the matter, even if we don’t like it! The beloved shoes are laid to rest in the closet, but only for a few days. They await the time when they can return to her feet and dance all around in the sun!

This past Thursday, Madie fell down and skinned her knee. It was pretty bad and she cried a lot. But she has been in worse situations. The ‘very mean Christine’ medicine has changed Madie’ depth perception or actually, I think it changes the 'messages' that here legs and feet are sending to her brain. When this happens, Madie cannot successfully maneuver stairs or step-offs, such as a curb or sidewalk. Mis-judging distances, she has fallen PLENTY of times. She has skinned her knees at McDonalds, at the clinic, at school, at Kroger, at Publix, at Wal-Mart, at Target…gee! I finally wised-up and MAKE her hold my hand for the week after the Vincristine! (Of course, she hates it! Little Miss Independent!!)
And, at the first sign of the falling-down or the “Weeble-Wobble” syndrome, I insist that she abandon the high heel sandals and she must go with the very “Unfashionable” sneakers! She gets so very ANGRY at me! She huffs and puffs, but she is very sensible. For a 5-year old, she amazes me. Madie remembers all too well the falls and complys with the demand to change shoes!

Another affliction of the feet actually has a ‘name’! The first time I saw Madie doing this *affliction*, I didn’t know it was a problem! I thought she was just dancing around, having fun! Being silly! Being Madie!
HA!
Boy, was I wrong!
I remember one clinic visit; Madie took off her shoes to get weighed. She jumped out of the chair and started hopping, dancing, and walking on her tip-toes. Just like she had been doing for weeks! A tiny ballerina!
Nurse Mary asked me how long she had been walking on her tip-toes. I had a blank look on my face. It was much like the ‘deer in headlights’ kinda look.
“Tip toes? Well, she has been doing it for a few weeks now.”

Of course, nothing escapes my severe analyst brain and I watched Nurse Mary tug at Dr.B’s shirt sleeve and point to Madie while she was walking down the hall….on her tip-toes. Dr.B laughed. He yelled out, “Madie! Come over here for just a second. I want you to see this new machine that Miss Bonnie has!”

Of course, Madie spun around and her eyes sparkled like glitter! She LOVES machines and she LOVES Miss Bonnie’s laboratory machines that test the blood!
Madie sprinted back down the hallway, breathless, asking “Where? What new machine?”
Dr. B turned and looked at me. He was laughing and picked her up.
Her heels had never touched the floor! She had been doing everything on her tip-toes!
Dr.B said it is an affliction from the Vincristine called “Drop Foot Affect”.
I don’t think it is very common because Dr.B was very excited to see her doing it. Did I say ‘excited’? Doesn’t that sound terrible? Is that just like an ONC?

And, the “very mean Christine” medicine makes her hands shake, tremble, and not work right. When this happens, she can’t color very well or hold her pencil very well. I caught Madie using one hand to hold her other hand steady one time. She burst into tears and gave up trying to color…she was so upset and frustrated. She was yelling “I can’t draw pretty! My hands won’t work anymore!”

Now, not only can that be very scary by itself! (Imagine! Your hands won’t work! Are they possessed or something?!) But, at 4 years old, that has to be quite a shock!

Of course, being the ever ‘super analyzer’ mom that I am, in my 1-tenth of a second to access the situation, I swoop over to the table; remove the crayons and marker only to replace them with a new box of Play dough!!! (But ONLY on the kitchen table!---as I really despise the stuff, it is such a mess!). But! It’s great, it’s crafty, and a kid with wobble in their hands can still work with it and be creative! I tell Madie that we will just put the markers away while the ‘very mean Christine’ medicine is still running around inside her little body, taking control over her little hands and fingers!

Another thing that the ‘very mean Christine’ medicine does to Madie is to make her eyelashes, eyebrows and sometimes (but not often) her hair fall out. I find them stuck to her cheek or on her clothes. Sometimes, she gets a big bare spot in her eyebrow when lots of them fall out! I think Dr.B even asked about it one time. He saw the big bare spot on her face and mentioned that he has even seen some kids that are on LTM come in with their hair missing. It had fallen out from the Vincristine.

Madie and I make the best of it and blow them in the wind---but not before making a wish on each one of them! Hey! They were very hard to grow, so we are going to use each one of them that we can!

Well, there is one other side affect from the 'very mean christine' medicine that affects the digestive tract. Most children will become constipated from the chemo. Of course, this can lead to serious complications in children with cancer. Infection is the "Number 1" killer of children with cancer. Madie has been so very blessed that she has only suffered with this side effect of the 'very mean vincristine' on very rare occurances!

And, another thing that the mean Christine medicine can do is to irritate the nerve endings anywhere in the body. This past week, Madie has had pain in her back and pain in her neck. I give her Tylenol for the pains, which has helped tremendously! But, it still scares me. She has complained of headaches these past three months. Madie has never complained of a headache from the chemo or spinal taps before. I can’t remember if she has ever complained of a headache in her life. I know that backache pain is one of the early warning signs of cancer and that Madie complained of backache constantly in January and February before she was diagnosed March, 2003.

I’m just hoping that it is another side effect of the ‘very mean Christine’ cancer chemo medicine. It started the next morning after the monthly chemo was given. Therefore, in my 'severe analyst' brain that I have, I'm banking on the fact that I believe it to be the chemo, all the while knowing that it could be the Cancer Leukemia lurking around the corner. What can I say? I'm a 'realist'!

Honestly, I can’t wait to be done with the cancer treatments-----they have been a nightmare. No! Wait! They have been worse than any nightmare that I could have dreamed up! It's like a cross between "Groundhog Day" where Bill Murray keeps waking up the same day, over and over and over again never knowing how to stop it and the other movie called Shrek where they are crossing over a rickety old bridge that extends out over a boiling lake of lava. (yeah....it's a boiling lake of lava and the rope bridge is gonna break any minute now, plunging both of us to our deaths! I can just feel it!) Except this movie is real life and I don't have any 'Fairy Tale Creatures' or "Noble Knight" to help rescue the both of us!

I think the worst part of these CCG/COG cancer trial protocols is watching your child suffer. I'm talking BIG TIME suffering, where me, the parent, has to LIE (yes!! Lie! As in make stuff up!) about the wonderful medicine that is going to make all the cancer go away and stay away!

Sadly, I can't take the medicine for her....Heaven knows that I would switch with her in a heartbeat!!

I hate to see her go through these terrible affects from the chemo, not knowing that she MUST to do it to get better. But, the worst part is that she has to suffer through these horrible, terrifying side effects and in the back of my "severe analyst brain" that I have, I am hearing horrible monsters of doubt that it might not work! Quick! What’s my plan if that happens?!

Pediatric Cancer Leukemia patients with the A.L.L. have a great shot at surviving on the cancer trials that they have today, but there is always that chance that it will come back.

No child with Cancer is safe, except in Heaven.

Friday, April 2, 2004 10:22 PM CST

It's pretty late on Friday night, just a little bit short of midnight. I am on the computer, reading over all the kid's CaringBridge Web Pages, checking out how their days have gone with all the ups and downs.

I also try to read the 'ALL' Kids 'postings'. Today has been very busy for the list serve. I try to respond whenever I think I can add value to the conversations. Most times, I just 'lurk' on the list---soaking up the comfort that is gained by knowing these people are my comrades in the same battle.

It has made me start thinking about the term 'strangers'. Actually, Lakota's mom left a message in Madie's little 'guess book' that came from the Bible, the chapter of Hebrews. It talks about how we should be kind to strangers as sometimes, we have entertained Angels.

I believe in Angels.

I believe Angels walk among us, here on this hard planet Earth. I believe that Angels join us in our battle. In fact, I know it.

And because of the Angels that walk among us.....I also started thinking about these 'strangers' people. I actually perceive strangers differently now that cancer has moved into my home, somewhat of a very unwelcomed termite infestation! How differently? Well, pretty wierd differently! Almost any one of these strangers that I see in my day-to-day life could be an "Angel" in our life now!

So, what do I do that's different?
I smile at everyone! I wave at anyone who drives and takes turns---it is so great to see people react! I smile big when shopping----when pumping gas----heck! When I go to the mail box and cars whizz by, I just wave and smile at my neighbors!

I don't know their names.
I don't know who they are.

BUT....
To me, they are not strangers anymore!
To me, they are ANGELS!!
To me, they could be my daughter's reason for being alive!

To me, they could have given her blood or platelets to keep her alive.
Seeing that it has been about 21 times now, it could be just about anyone.

To me, they could have made a donation to the Red Cross that allowed them to buy the supplies to collect the blood.

To me, they could have made a donation to the Children's Healthcare of Atlanta where Madie goes for treatment, where they have saved her life.

To me, they could be working where they make the plastic that is used in all the various items to collect a blood donation, or heck, even the tubing used when it goes into her little body.

To me, they could be working for the auto manufacturer that makes the cars that takes these people to the places where they go to donate the blood that went into Madie's little body to save her.

To me, they could be working for the bank that keeps the money that people donated to help pay for the costs of the blood supplies and the blood donation materials.

To me, they could be working at the gas station that keeps the gasoline pouring into all their cars so they can get to the Red Cross blood donation centers.

To me, they could be working for the county road crews that keep our roads clear and working so they could get to the Red Cross blood donation centers.

To me, they could be working for the police department that keeps the roads safe so they could get to the Red Cross blood donation centers.

ARE YOU GETTING THE PICTURE YET?

To me, I think they are all my friends and they have all helped my daughter stay alive!

YES....to me, they are not 'strangers' anymore. To me, they are my friends, I just have not met them yet!

Now...if only I can get all that onto a bumper sticker to place on my car so everyone can read it, I'll be doing fine!

HELLO *ANGEL* STRANGER!!!

:-)

Sunday, March 28, 2004 5:33 PM CST

Wow.....the first journal entry.

I normally am never at a loss for words.

I have thought about it lots of times and planned lots of "Profound" words to put down on the blank spaces. But actually, yesterday I changed everything that I had prevously planned to talk about.

Ahhhhhh....yesterday. Just one of many days in the trenches of fighting this bloody battle. Most times, I feel like the battle is between me and a horrible two-headed monster that towers above my head. I picture me standing there, with a sword in my up-raised hand, much like the pictures that you see at the movies of Hercules trying to slay the two-headed dragon.

There I am.....swinging my sword....but it is getting so heavy. So very, very heavy. YES! My ears are ringing from the pain, but I can't stop, NOT NOW! For if I do, that which I hold so dear and sweet will be snapped up like tiny twigs in those vicious jaws just inches above my head! I can feel the hot breath of the monster as it swoops down in another effort to grab my precious, darling daughter laying at my feet! I can feel her little fingers tightening around my ankles as she clings to me for life.

The monster tries again. "Not this time!" I say through clenched teeth. I make a leap across the two-feet of space and lunge for the monster's neck. I sink the steel blade into the flesh all the way to the handle. It shreeks in pain, grabbing for it's neck while the blood is gushing out between it's fingers! Turning it's back, it begins to run!

"RUN!" I yell! "And don't come back!" I'm shouting and my lungs are burning from breathing the heat coming from it's back.

I can only pray that it doesn't come back.

I turn my attention to my precious daughter who is shaking and shivering at my feet. She is cold from fever. She is shaking and coughing but looks up into my face with hope and in the tiny voice of a fairy-like child asks me "Is it gone? Is the fever gone?"

I blink my eyes and come back to Earth. I'm looking at the digital thermometer in my hand that is beeping and it reads 99.9. I blink again and answer her, "Yes! Yes, sweetie the fevers have gone! Just a *smidge" of tempature left!"

She is laying on the bed, looking up at me. Her face lights up like a huge moonbeam! I can tell she is so proud to beat the monster back into it's lair! NO HOSPITAL!!

I turn around and walk across the house into the kitchen where all the medicine is on the counter. I'm thinking to myself----we used two antibiotics this time. Normally, it's knocked out with one. I'm worried. I'm very worried.

Madie has very bad allergies and she has fought the pneumonia before, always doing well. She actually has not even needed her nebulizer for the past two years. In fact, CIGNA has sent me a letter just this past summer that they had removed her from the "asthma" mailing list---she had not had any perscriptions for the asthma medicine in a long time.

But now, things are different. Now, the Cancer Leukemia has come. What does this mean for my daugher?

This weekend, Madie has been on "Day 5" of the Zithromax, so she doesn't take any more. But, the pollen is worse and she is coughing more today than yesterday. Of course, I also have to worry about the Methetrexate. That medicine is terrible on her bone marrow and can also affect the lungs. I'm worried that the cough is partly the pneumonia and partly the Methetrexate. I'm worried about what this is doing to her lungs. I'm worried about the scars in her lungs that she already has from years of pneumonia and asthma. I'm worried about the scars that she could get. I'm worried because she has been on Singulair since last October and it had been performing wonders! But now, it's like spitting in the ocean. Will it make a difference? I'm worried because she is on Allegra, and it appears to be keeping the runny nose away---but at what price? Is that going to be enough to keep this two-headed monster away until we can get through this pollen season?

And then....I worry if these attacks are going to make it so much easier for the Cancer Leukemia monster to come crashing through what is left of our defenses? It wouldn't take much right now.

I can only pray....and watch....and wait. And search the horizon for any signs of the invading mongrel hoardes.............until next time.

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----End of History----