Dear Jack

I remember the day you were born as if it were yesterday. The memories of meeting you for the first time are forever etched in my mind. The way you looked, the way you sounded, and how you felt when I held you close. You were and still are my baby boy even if you are too old to give momma kisses. 

8 years old!!!! Wow! You've been through a lot the past few years, as the rest of us, but I want you know that I recognize the sacrifices you have made for our family and in your childhood. While Lucy was the one taking the chemo, cancer has affected us all and taken a lot away from our family. I'm proud of how you have handled it over the years, but today I am the most proud. 

You are celebrating your birthday at St. Jude in Memphis while your sister undergoes surgery, treatments for the entire day. And all you said to that was "we will make the best of it". You didn't ask for a party, and you only asked for one gift.  That my son is tell tale sign of how big your heart is. You've always had a big heart when it comes to your sister. From the day we brought her home and her shares your best toys with her, to when she was so sick and you laid with her trying to comfort her. I am proud of the young man you are starting to become. Much sooner than you need to be. 

Today doesn't just mark an important day for Lucy and her no mo chemo, or for you and your birthday. Today marks an important day for our entire family. Cancer has effected each and every one of us differently. It has stolen things, and yet it has given us a pretty solid framework in which we have decided to live our lives. No regrets, go for the gold, and laugh as much as you possibly can. So I want you to always remember that this day is YOUR day as much as it is all of our day. 

Happy birthday, buddy. I love you and admire you very much. And I love that you can make me laugh just by laughing yourself. And thank you for sharing your day with the family in a place we have called our second home for the past 2.5 years and not a complaint or worry from you. 

Love, mommy  (you may not give me kisses anymore but you still call me mommy)

Dear much older Lucy

Dear Lucy:
I remember the day you were born like it was yesterday. Daddy and I woke up early for your planned arrival by 3 am. We went to the hospital and were anxiously awaiting your arrival. When you finally came, you did so with a voracious attitude. Screaming before you were even fully delivered. I hadn't even seen you yet and the first thing the doctor said was "look at all that HAIR". It was dark, thick, and stuck straight up! The nurses brought you in to me after every test, clean up, and break and you had a Mohawk. I thought "how clever they are fixing her hair already". I was wrong. Your hair would prove to be as strong willed as you and stuck straight up for the months to come regardless of what we did.
As you grew, so did your hair. It was crazy curly, and thick. I loved walking into your room each morning to see how it had shaped through the night.
Soon you were walking, and your hair grew faster than you did! Everybody always remarked how you were a little girl with grown up hair. You had gotten a distinct part by that time, and as wild as your personality, your hair did what it wanted regardless of our efforts to shape and mold it.
Then, your hair just became too much for your 3 year old body. It flowed all the way down to the top of your bottom, and you were constantly getting food, dirt, leaves and whatever was around you caught in your hair. We knew it was time for that first cut. Daddy stood his ground against messing with your hair until he could finally no longer get a brush through it without crumbs of dinner falling out.
So it was decided, before your third birthday, you were going to get a big girl haircut. You were so excited to sit in that big girl chair. You stood so still for Rosie. What appeared before me when she was done was way more than I could have ever imagined. You had a shoulder link bob that was the thickest and most beautiful thing I had ever seen. I cried a little. As in the past, your hair continued to mirror your personality. You were such a big girl and ready to do "3" year old things.
2 weeks later, I remember thinking how cruel the world was. I was told the worst news ever. You had cancer. At first, I thought how shallow of me to cry at the thought of you losing all of that beautiful hair. Of course, I grieved for your lost childhood and mourned what you were about to lose, but your hair stuck in my mind always.
That first morning when you woke up and were crying that your hair was in your mouth, and I couldn't see your pillow case because it was covered in that beautiful brown hair. I cried. After several more days of that, we prepared you that all of your hair was going to fall out. We asked if you just wanted to get it over with. You, surprisingly were so brave and said "yes". As if it were casually choosing an item off of a menu to order.
In our room at the Ronald McDonald House, your dad buzzed off all of that thick beautiful hair while I watched and choked back tears. I didn't want you to see me cry. You were scared at first. And we told you, "it's just hair honey, it will grow back, we promise" and you told us you knew that and that wasnt why you were scared. you said the noise of the clippers were scaring you. we put on your headphones, and the three of us sang Beatles songs until the last lock fell. When it was over, you turned around and looked in the mirror and were so proud!! You said "I look like all the other kids now". You couldn't wait to show all your doctors, nurses, and friends.
Standing in that room, for the first time, I saw something I had never seen before. Not really. I saw your beautiful brown eyes. What strength and courage they had in them. I saw an old soul. A beautiful old soul.
Why did I decide to tell you this story? Because one day, when you are older and look back on the day that mommy shaved her head and looked so silly, I want you to know why I did it.
I knew it the day you were born. I knew it the day we shaved your head, and I know it now as I prepare to shave my own head in your honor. I was wrong. I was so wrong! It's not "just" hair. It was YOUR hair and your health. It was your personality. It was, after all, your nickname. Losing your hair meant you were sick. It meant your body was at battle. It meant my little girl wasn't going to have a life of most other 3 year olds.
That day when we shaved your head, you didn't have a choice. I do. I am choosing to shave my head for that last lock of yours that fell to the ground. I am choosing to shave my head for the look I saw in your eyes after it was gone. For your determination, your strength, and for your fight.
I will no longer tell anybody "it's just hair" because it's not. It's the mark of a warrior. It's just one wound you suffered during your battle. And the same is true for anybody that has this journey.
I am shaving my head so people will notice I'm different, yet well. And I will tell them all about you. I will tell them all about your friends. I promise to never turn down an opportunity to tell your story and spread awareness for the war you fought and are still fighting. I promise to all of your friends who courageously lost their battle to always talk about the day I shaved my head. I will force people to look at me, and ask me why I'm bald. I will tell them it's my choice to be bald because my daughter didn't get the same opportunity to make this choice.
I hope you now understand. I hope you read this and look back at the day I came home with no hair and remember how you laughed at silly mommy. I hope you know that I love you and would go to the moon and back for you if I needed to. This, my beautiful daughter with your deep dark soulful eyes and thick dark brown hair, is a small way for me to tell you how much I love you and admire you even as a 3 year old.
Love~
Mommy

I Know Why the Caged Bird Sings

For some reason, I have had this title in my head for the longest time.  Maya Angelou Poem.  I finally looked it up to read it in its entirety, and now I know why....let me share it with you:

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and is tune is heard
on the distant hillfor the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom. 

Maya Angelou

Obviously when Maya Angelou wrote this in 1928, she was referring to the segregation among blacks/white. She was speaking for her own race and how they were still so caged in their existence regardless of the freedom they were supposed to be afforded.  But this poem seems to ring so true for me and my family lately as well.  

Sometimes in this world of childhood cancer, I feel as if we are living in a cage.  And literally, our house is our cage.  I remember when we first started this journey and were confined to our home much more than we are now.  We loathed it.  We loved our "home" but hated being stuck here for various reasons.  And now as we come to a close of our treatment in 5 months, we are finding ourselves in the opposite predicament.  We have become sort of like a dog who lives in a cage his entire life.  When you finally let him go, he will always return to his cage.  He has become accustom to such a life and its his comfort zone.  Same with the bird.  He wants out.  He sings about how much he wants out.  In reality, he is still a bird that even given freedom will never fly far from his cage.  

How ironic? right?  We have so longed for this day, and as it approaches, we are scared shitless.  Our anxiety has gone through the roof, and now all of the things we had put on the back burner during the beginning of treatment, the things that we could not let float into our minds or we would go crazy, are coming to surface.  We hate that we have to inject our daughter with poison to kill a beast, but we know that poison is doing its job.  Its destroyed the beast and keeping it at bay.  Now we come to a point where we are stopping all of this, and we don't know what is going to happen.  Of course we have trends, statistics, and doctors guesses on what may or may not happen, but when its your child, that means nothing.  We try not to let the fear of the R word get the best of us, but when you see it happening to your friends' children, you cannot escape that it could very well be a part of our reality.  Does Lucy's doctor think she is at high risk for relapsing?  No.  Do statistics show that her type of leukemia has a risk of relapsing? No.  But do I see other children with the exact same cancer having relapses.  Yes.  Heck, they still don't even know exactly what causes leukemia, let alone how to prevent or eradicate it totally.  And then lets talk about some of the side effects of chemo.  I remember on day 3 of diagnosis reading this big binder that was given to us regarding our treatment.  It talked about developmental delays, physical issues children have after chemo, the risk of developing other cancers from the chemo.  That's right.  Lucy has a high risk to develop other cancers because we have exposed her body to a chemical that causes and kills cancer.  And I am not saying any of these are small chances either.  30% is a big number.  3 out of every 10 children who become "cured" of leukemia (which is defined as 10 year event free life, meaning she does not relapse with the same leukemia she started with.  This does NOT refer to new cancers or new leukemia's that she could develop) will be diagnosed with a new cancer.  And I hate statistics because they are numbers, and my child is more than a number.  So let's put it this way. She has 20 kids in her class. Let's say all of those children had pre-b ALL.  6 of her friends will be diagnosed in the next 10 years with another form of cancer and have to undergo treatment, which then, yep you guessed it, increases their chances even more to get ANOTHER type of cancer and all before she's 20 years old.  

Now I know, I know. Live one day at a time.  You can't live your life in worry or else you would have a terrible life.  This is what I have been saying for the past 2 years to keep these horrible but true facts out of my mind.  I had to keep my eye on the prize. The problem at hand, and forget all the "what ifs".  Well, now is the time that the "what ifs" are more probable.  And that is what my biggest fear is.  Somebody pointed out to me that I hadn't written since January 22.  And its not for a lack of words (I never have that), it because I have had these fears for a while, and I didn't want to acknowledge them, as if I did, they would come true.  Irrational? Yes, but remember, I've been living in this cage for over 2 years now.  It has become our life and our comfort zone.  I haven't felt much like writing at all, and that is called depression.  Not wanting to do the things you love.  I have a book sitting here waiting for a second edit and then it can be reviewed and published and yet when I look at it, I have no desire to open it up.  And I LOVE writing.  Yes, friends, depression is rearing its ugly head again.  And don't be fooled, I still take anti-depressants and see my therapist.  Some things take longer to heal.  And I fear the end of treatment is going to take a little to get used to. 

There is another issue that has caused the depression to worsen. I have returned to the office "full time". I use that term loosely because I am finding how much vacation, personal time, or sick time I need to take is a really high amount.  Working full time, taking care of myself, my family and a cancer child is not an easy feat.  I see now why many parents elect to just have one stay home during treatment or work from home.  This has actually caused a decline in my health, Zach's health, and the kids are not immune to it.  We have lived in a tight cage together for 2 years. When one ventures out on their own, it is felt by all.  They have more room to move, but are finding that they are "missing" an important element to their space.  Plus time is more precious now.  And I choose to use my time differently than in our BC (before cancer) days.  I used to covet my vacation and personal time for me. Now I have nearly used it all up for the kids.  I have seen what is important and made drastic changes to how I react to that.  I used to worry that I wouldn't advance at work or people would look at me as unreliable when I needed to leave because my kids were ill or simply because I felt like I needed to have a "date" with them. Now I don't care.  I don't ask permission or try to explain, I just leave when I need to leave.  Oh, how priorities change.  For the better, but it is still change. 

For those of you who are unfamiliar, I have basically described what is known as PTSD.  Post Traumatic Stress Disorder.  Yes, my entire family is going through this except for Lucy.  Some people say "what that is what a war veteran experiences, not a cancer family".  Well folks, I am here to tell you first hand, that we are in a war.  A constant state of battle, fear, change, and trauma.  Our lives were changed in a matter of moments on December 26, 2010.  We have been fighting for our daughter's life since then.  We have had to learn to navigate situations in a split second.  We have seen many friends die.  Yes, we are at war.  We are coming to an end of one battle and are trying to prepare for a new one.  That door on our cage is about to open up. We are going to be expected to step outside and try to fly, but remember, our wings have been clipped.  We are fearful, cautious.  So yes, I know Why the Caged Bird sings, and I am trying to prepare for the day when we get what we have longed for this entire time.....Freedom.  

Better grab a cup of coffee~ it's a long one, Clark

It's been awhile since I blogged about what's been going on and partly because we have had so much going on, I haven't taken the time to do so.
Well I was reminded last night the point of this blog, team Lucy page, my book, and all of the activities I participate in. A child whom we spent time with at RMH and whose grandma I speak to weekly via our cancer mom group, died suddenly yesterday morning. He had 6 months left of treatment and had leukemia. He did not die because the cancer came back, he died of complications due to the chemotherapy our kids take. He went in the night before with fever and vomiting thought to be stomach flu, and died of septic shock the next morning (blood infection). See his little body didn't have the strength or immune system to fight whatever was going on in his body. The point of chemo In leukemia patients is to make sure you keep the immune system as low as you possibly can while trying to not let the child become neutropenic. Since leukemia is a cancer of the blood, it's imperative to maintain this delicate balance. This is why Lucy wears a mask and we are always worried over something so simple as a cold. This is why we struggled with sending her to school. This is why we stay cooped up in the winter months at home. And yesterday, I was reminded that we need to remember why we do these things.
Which leads directly into my fears because of what happened last week. Saturday morning (October 13), jack started running a fever and had horrible congestion. He said his throat hurt. We waited it out a few days and his fever finally broke Monday. We noticed before we put him to bed, he had a horrible rash at the bottoms of his legs. We thought it was consistent with a virus, but decided to take him to the doc the next day just to be sure. Well it was also a Memphis trip. So now one of us had to stay home with him and the other do the long trek alone to Memphis for Lucy's spinal. It was decided I would do Memphis because Zach was having complications from his surgery, which I'll get to in a minute, and needed to see his surgeon. Well that scenario changed Monday night when both jack and I were up all night vomiting. The next morning jack was having horrible stomach pains and I was having extreme body aches. So Zach took jack to the doctor where they said it was just a virus and did a flu swab and rapid strep test just in case. They told us if the rash spread to bring him back. So since I was still throwing up, Zach and Lucy left for Memphis. Jack and I camped out in bed all day. He was complaining of horrible stomach pains and was actually crying and yelling over them. And I noticed his rash was spreading all the way up his legs and around his mouth. So after 3 hours of screaming, I took him to the ER fearing an appendicitis.
What a lovely trip. I was still sick and in my pjs and here we sat for an hour and half in the waiting room while he cried. Finally the doc came in and felt his stomach and looked at his rash ad said it was just a virus and would go away in time. I asked about the horrible pain, and he dismissed me. So they proceeded to give him zofran and a cocktail of Meds to help with the cramping. He had to drink this huge liquid amount and of course he couldn't. He threw it up immediately. I asked "what now?" as he's wailing in pain. They told me to give him Pepcid and feed him the brat diet and it would go away and sent us home.
Of course neither of us slept that night. He was up in so much pain, and I was so worried. I tried every home remedy I could think of. The next day wasn't much better. He could go maybe an hour or so with Tylenol and be screaming again. So I called our family doctor. He asked why no blood work was done the night before. So he told me to go to the ER for a complete work up for an apendicitis. So off we went again.
I explained what was going on and told them what our doc said and they put us right in a room. About 5 minutes later the same nurse we had the night before came in and said "you're back again?" I explained what had happened and what the family doc said. She said "well, he's not having an apendicitis. I can tell, he just needs to poop" mind you Jack is screaming in pain. She seemed slightly irritated with me when I asked about pain Meds. Jack said he was cold and asked her for a blanket. She said no. She said if you're running a fever we don't want to make it worse. I explained he didn't have one upon admittance. And reminded her that last night when we were there and he did have a fever, she gave him 3 heated blankets. She said "well I'll get sheet". So we waited. And waited. I rang the nurse bell asking about blood work, I rang the nurse bell asking about pain Meds as my son is laying there screaming and crying. I reminded her he told her he was at a 10 for pain. An hour and a half later, she comes back with an IV. She takes his blood and hooks him up to fluids. I asked about pain Meds, she said the doctor would have to order those and mostly likely since he just needs to poop none will be given. She also said they wanted confirmation from our family doc about the apendicitis, and pointed out she was sure he needed to poop again. Again she leaves. Finally about an hour later, she comes back with a drink condition with contrast in it for a ct scan. This was the size of a big gulp and he had to drink half in an hour and a half. I told her there was no possible way he could do that without zofran and pain Meds, reminding her every time he ate or drank previously in the day, he threw up and was in horrendous pain. She said she would check on pain Meds but to start drinking. Well of course one drink and his pain was immediate, so I rang the nurses button again and asked for pain Meds. The nurse comes in and says "he need to drink that now". I finally stopped being polite and my mama bear came out. I told her that he would NOT be taking another drink until we get something for the pain that we asked for over 2 hours ago. She slammed, yes slammed the door and left. 10 minutes later, back with pain Meds.
Within 5 minutes, jack was a different boy. He started drinking the contrast and was finally sitting up and laughing, something I hadn't seen in 4 days. Mind you it's now about 9:30 pm and Zach and Lucy are heading back from their Memphis trip where 12 hours earlier she had been sedated to get a spinal tap. Luckily, jacks kindergarten teacher asked if I wanted her to come up and I said yes!!! Please!! She is so good with both my kids, and she Elle's me to get jack to drink the contrast. As he was drinking it, we had other nurses come in to check on us. They kept saying he wasn't drinking fast enough. I asked one nurse if his CBC had come back and if I could have a copy of his complete panel. She asked if I lived in town, to which I replied yes. She said that they don't like to give copies and for me to request them in the morning from medical records. I told her no thank you that I wanted to see them now. She said she would check and see if it was ok, but probably wouldn't get them. I bluntly told her "no, you will get me a copy of my child's bloodwork it is my right to look at it. She left.
After ringing the nurses button again (I bet they wish they could've taken my button away), I finally got a lab report I was appalled at jacks numbers. His WBC was through the roof indicating infection. His ANC and neutrophils were also abnormally high. Around this time, he finally finished drinking the contrast and we went for a CT. After we came back, around midnight, Zach and Lucy were pulling in from Memphis and he dropped her off and came up. The doctor finally came in for the first time, and he said the CT looked good and his appendix were fine. So we were dealing with a virus and to keep him hydrated. And he was releasing us. Zach asked about pain meds. The doctor said Tylenol and Motrin would work. Zach politely reminded him we had done that for almost 48 hrs yet we landed in the ER again for pain. After several discussion back and forth, he finally gave us a script and sent us packing.
The next day jacks pain was no better and we utilized pain Meds freely. He still wasn't eating, but started drinking. This is Thursday so we are nearing the 7 day mark from when this all started. His family doctor called and said he reviewed the labs and CT and that he had swollen lymph nodes in his abdomen, which was probably causing so much pain, and that he definitely had a virus. He was great, he said "I want you to know it does not look like leukemia, and is not consistent with any symptoms of it; however if he wasn't better by Monday to bring him back.
That's where we sit. That has been our week. And yesterday, jacks rash grew a bit on his face and he was still in pain, but was finally able to eat. So we are taking that as a good sign and sending him back to school today.
Well yesterday I found out that Logan had had the exact same virus and symptoms as jack :( so now I'm freaked Lucy is going to get it and she is on steroids which mask symptoms of illness and actually makes her immune system weaker. So I get to freak out about that for a week or so.
Oh yes, I mentioned Zachs surgery not healing. Unfortunately, he is one in a million (we really have great odds with bad luck) where his incision healed bit left a hole on the outside of his cheek, so instead of salivating inside his mouth, he is doing it outside. Poor guy has saliva running out the side of his face! So he goes back into surgery next week to try and fix it, and if that doesn't work, he has to have the entire gland removed and start all over.
So not to end this post as it started with such devastation and sadness, we did have two positives happen. Lucy's spinal is clear!! Yay!! And we added a new member to our family. Clark W Griswold. Yes, we got a new dog! We rescued him from a shelter. Clark is an 8 lb chiweenie and quite hilarious. Taco
And him are bonding, it's only been a week, but Clark acts as if he's been a part of our family forever.
As I sign off, I ask that you keep all the kids fighting in your heart. Lucy may be in remission, but her fight is still very real and very dangerous as seen with Logan's death. Logan was planning his make a wish trip :(

Everlasting gobstopper and lickable wall paper

Oh yes, we all know the words to Willy Wonka (the old version not the creepy Johnny Depp one). Lick the wall paper, the strawberries taste like steawberries, blueberries taste like blueberries, snozzberries taste like snozzberries. "snozzberry? Who has ever heard of a snozzberry?" Well, I have!! They label it under such names as Xanax, kolonopin, Zoloft, Wellbutrin, etc. And it's just for adults. Any adult, but those with children are probably more apt to take such things, and those with an ill child SHOULD take such things!
We have this discussion often in one of my cancer mom groups. Who takes what? Does it help? How do I get it? What do I say to the doctor? I don't want to tell them I'm crazy? Or will they think I'm crazy if I ask for it? These are all the questions, discussions, etc we have. And I have always had an answer for all of them.
I'm no longer afraid of what "people may think" or how they may label me. Coming from a family with a looong history of mental illness (I hate that term), I finally accepted my fate long before Lucy got sick. I fought it for years. As a teen, I chose eating disorders and OCD, as a young adult, I just charged through the manias and did a lot of damage along the way and spent a lot of time isolated during my fallouts. Well, after I had kids, I no longer had that option of nursing my illness back to "normal". And postpartum, it got worse. I'm classified as a mild bipolar 2. Basically I have periods of mania (highs where I have tons of energy and sometimes not the best judgement), and then I crash. I crash into a depression that hardly allows me to get out of bed. I quickly realize what damage I have done during a mania (committed to too much, spent too much money, ect). It takes much longer to get out of a depression.
I tried many drugs as soon as the depression would hit and then after it was over, I would stop taking medicine because it stifled my highs. And I loved my highs. I rationalized each time that I wouldn't let it get out of control. And at the time, I had no clue of my diagnosis, I was just going based on past events. And I refused to believe I had an illness at all. What a horrible label! Crazy! Ugh.
Then I had Jack. I had postpartum horrible. And I didn't recognize it. It wasn't the kind where I felt I may hurt my child, but the kind where I wouldn't leave the house. Zach noticed it first. So at my 6 week check up, I talked to my doctor, and was put on Zoloft. Wow!! What a difference after 2 weeks. Even I noticed it and felt it. And I liked it! I was truly happy and not speeding, like a mania. Well soon after Jack turned one, we decided to try for another child, so I went off of my Meds. And I also learned during that time, I had hypothyroidism. Depression is caused by hypothyroidism, specifically bipolar 2 (of course I don't know this at the time).
I got pregnant, had Lucy, and this time demanded zoloft as soon as she was popped out! I did NOT want to experience post partum again. And it worked! During the first year of Lucy's life, something happened. The drug no longer "helped". I wasn't in a deep depression, but I had no happy feelings either. I was just blah. I worked with my OB and even went to mayo where my thyroid condition was upped to hashimatos disease. We tried different medicines, and for a while, I was on a roller coaster ride. Then Lucy got sick. I couldn't stop crying. And of course, that was very normal. But Lucy hated it when I cried. So this time, I consulted an actual psychiatrist. We talked about my history, family history of both depression and hypothyroidism. And he prescribed me three different medications.
I was like "hey, I'm all for getting better, but I hate taking so much medicine, and I really want to be able to "feel"." I explained how I often would go off medication because it made me feel nothing and I missed my manias. He assured me, the cocktail he gave me would allow me to feel, but help me to manage my feelings. He also suggested I see a counselor. Ugh again! I'd tried the counselor route SEVERAL times and it always failed. But I knew with Lucy being sick, I had to have control over at least one thing. So I went through lots of counselors. And my doctor said, if you don't like them, find somebody new. What a concept??!!! I could fire a counselor??!! I had no idea. And that's what I did. I took the cocktail of medication, I began blogging, and I fired a lot of counselors until I found the "one". The one who, at first, I was skeptical. Then who I fell in love with. (not literally of course). He challenged me, he explained scientifically why I was bipolar 2, and he actually diagnosed it. Before then, I was just "depressed". He helped me to realize why I needed medication, how to get the most out of my medication, how to balance my hashimatos and my depression, and most importantly how to come to terms with reality. My daughter has cancer and it could possibly take her life. I was so mad when he made that statement. Now, I'm glad he made me realize it.
Between my liberal psychiatrist who believes that living through chemistry is not something to be ashamed of and it's about finding what's right for your body, life, and situation, and my counselor who helped to explain why am I am how I am, I have found the right snozzberry and ever lasting gobstopper. My world isn't all lickable wall paper (although it should be), nor is it a world filled with chocolate rivers and candy filled tea cups, it is for all intents and purposes close enough. I live in reality, but understand that every once in a while we all need to escape and may need the help of others or snozzberries. And snozzberries are very real in my world. At least they are now.
So when we have this discussion in my cancer mom's group. I'm the first to offer my story, opinion, and I never label anyone as depressed or crazy. I simply tell them they need their everlasting gobstopper or happy pill to help them get through life.
Now, if they ever made kolonopin or Xanax as wall paper, you'd better believe, I would have NO problem redecorating and licking the walls.....often!!!

Taco continued....and update on Lucy's numbers

Lucy had clinic on Wednesday and her counts dropped....a lot.  Her ANC is below 500 which deems her neutropenic, just like Taco. They both have the same WBC and close to the same ANC.  This is just ridiculous.  So we are home bound until next Wednesday (Lucy is) to see if her number rise.  They have reduced her chemo to 1/2 this week hoping that helps her bone marrow recover.  Its crazy because we were JUST mentioning that her numbers have seemed to finally stabilize, and we have found our "sweet" number....WRONG.  And I am pretty pissed about it.  I don't know why.  I mean, we deal with her counts going all over the place all the time. I don't know why I'm so upset over it this week.  It could be that this means she misses her cousins birthday party...AGAIN, and that we are limited on what we can prepare for her to eat..AGAIN, and that we can't make any plans with our without her...AGAIN.  I feel a little trapped today.  Its beautiful out, and I'm moping.  I'm having a little bit of "poor poor me party".  And I intend to do so as long as I want!  It doesn't help that Taco is still in limbo as well.
So here is the update on that little fellow.  We took him to U of I Animal hospital on Sunday to get a second opinion.  The doctor there had his numbers before he got there, so when he walked in the door all majestic and happy, she was confused.  She said based on his counts, he should NOT be up and looking so good.  They ran a panel of tests on him and came to the same conclusion as our vet--we have no clue what is going on.  So they decided to confer with internal medicine to see if anybody there had any clues.  They did come up with the diagnosis that Taco has a bone marrow disorder. What disorder, we will not know unless we do a bone marrow biopsy, which is very painful.  Zach and I discussed this option, and looked at the different types of disorders he may have.  Basically all of them are cancer.  And the prognosis is not good in any of them, and the treatment is chemo..horrible chemo.  We decided not to do the bone aspiration.  It would only tell us the name of his cancer, and that would really do nothing for us except make us even more sad.  So we sat down with the kids and explained what was going on.  We told them Taco was very sick with a doggy disease (no we did not say cancer or leukemia and we don't plan to).  We told them that we weren't sure how long he had left to live, and that we were going to make his life as comfortable as possible for as long as we could.  We told them he could die tomorrow, or next week, and that we didn't know. Poor poor Lucy.  Her lip was quivering the entire time, and then she burst into tears.  Jack, on the other hand, had his defenses up high.  He didn't say anything, or even show an ounce of emotion.  We asked if they had any questions, and we did our best to answer them.  Since we are agnostic, we explain death differently to our children.  Jack had already had the concept down.  He said "When Taco dies, we won't know where he goes, because only people and dogs that die know that, and they can't come back and tell us".  I'm so proud of his logic.  So we talked about the different options of where we thought Taco may go and what he may do.  It got us giggling as we were talking about his habits and personality.  We decided he would have all the treats he wanted and sleep on the most luxurious sheets.  We also said he would chase and catch all the squirrels he could handle.
We then took Taco to our vet the next day to talk about comfort options.  We explained and brought in the results from the blood work from U of I.  We talked about how long he may have, and decided to go ahead and run another blood test to see where he was at.  When the doctor came back in, she was in as much shock as we were.  His numbers were getting better.  Not a lot better, but better.  They should be getting worse.  So we were once again baffled.  We decided to go ahead and give him fluids, and baby food with his real food to entice him to eat, and go back on Friday for a recheck of counts.  Yesterday he was his old self.  Running, barking, playing, sleeping in, all the normal stuff.  Everyday the kids wake up and ask if he is still alive.  Jack especially.  He was quiet, but has been asking more questions as the days go on.  So basically my update on Taco....we have no update.  We have no clue what is going on.  We decided if his numbers are good tomorrow and rising, we will go forward with the bone marrow biopsy.  At least that can rule out the cancer or confirm it.  As it is, we are just really enjoying the last few days of spoiling him.
So I think that is also why I am a bit bitter.  I can handle a CBC and interpret it for Lucy, but I never thought we would be doing it for two members of our family, one being Taco. This is just insane.  We are going to schedule a radon test, although that causes lung cancer, not leukemia's.  We are going to do a soil test, and we have already had the water tested.  And none of our neighbors are sick, and they have lived here a lot longer than us.  And all the people that lived here prior to us are also fine.  So we really are doing this for more of a piece of mind.  It makes me on edge....and a little cranky, and THAT is why I feel like having a pity party today.

Memphis Trips, Birthdays, and Dex

So I don't write any blogs for at least a week and half, and then in two days I do three of them....lolzzz  obviously had some passion stewing inside me, huh?  I promise not place any type of positions on this post regarding politics or naked barbies ;)  This is all about "being inside the Weber house".  Its quite interesting inside this house.  Unconventional at times, I'll admit.  Sometimes we should be nominated for parents of the year,other times, we give ourselves big fat F's for parenting.  Zach and I were reminiscing the other day about all of our failed parenting attempts.  We were laughing so hard, we were crying. None of the things we have done that have resulted in a grade of an "F" were intentional, they were just based on the fact that we are inexperienced.  Kinda like when we first became parents.  I bought "What to expect when you are expecting" and "What to expect the First Year", guess what I got out of both of those books?  Well...usually I'd be yelling to Zach "what the hell chapter covers this?  I don't remember reading anything about this in the books!"  ha!! I think nobody tells you about what its like to bring a newborn home because you'll never do it.  And I think you are so tired and forget about the first one, so you get pregnant with the second one, because if you remembered the hell and lack of sleep, you'd never have more than one kid.  hehehehe  And don't even get me started on nursing.  All I read in the book was how natural it was, and words like "latching" and "the let down of the milk".  Nobody told me anything about bawling my eyes out the first two weeks why I was doing it because of the pain and time it took. What the heck is natural about that?
So...as I was saying, this house is interesting.  We are learning all over again.  Having a child with cancer is like having a newborn.  We need a book..."What to expect when you get hit with the unexpected......and it sucks".  That's what I would name my book.
Our latest education came in the form of numbers.  We had been pretty fortunate in that Lucy's counts were pretty stable and predictable.  That was until we expected them to be stable and predictable.  Then they just went south.  Well, we headed to Memphis anyhow with an ANC of 380 (must have 500 to do lumbar puncture).  I wasn't comfortable with it.  I was afraid we would get there, and they would still be low and we would either turn around and come home...or Pui would make us stay until the numbers came up.  Then something happened.  We had a two day appointment schedule so we had to leave a day early and do a hotel half way.  And as I was taking a picture of Lucy, I noticed something.  There was a huge ring of light around her head.  She has had these in other pictures as well.  Not all of them, and with different cameras, same lighting, etc etc.  I call it her "friend".  Zach thinks I'm crazy.  But it hit me...the entire time her counts were low, I don't have one picture with that aura surrounding her.  I looked at Zach and said "she'll make counts, she'll be over 1000".  He said "Why do you think that?"  I said "because her friend is back".  Guess what....counts were over 1000 ;)  So we did get procedure at Memphis and she did great.  We also got a call on our way home that her spinal came back clear and perfect.  We needed that call.  We had to have so many in a row free and clear since she had a bad one a few months ago.  She now has 78 more weeks of treatment and only ONE spinal left with chemo.  That's right...just one left.  woo hoo!  After that one in March, we will go to Memphis every 16 weeks for spinals to just check and make sure there is no leukemia cells in there.  so we are almost to one milestone...yay!
We also celebrated a birthday this week.  Zach turned 30.  We had a much better party and time than last year.  Last year we were forced to celebrate a day early at the Ronald McDonald House, and Lucy was in the most intense phase of treatment.  It still gives me butterflies to think of that time.  We made sure we had great decorations and played games.  We had pizza and cake.  The kids had a great time, and it was nice to celebrate at home.
And last but not least....we just got through another dex pulse.  UGH those are horrid.  The first day was horrible because Lucy just cried and cried for no reason.  We couldn't comfort her in any way.  She just had to go to her room for 45 minutes and cry.  Then after that, it got a little better.  She still eats a lot, but it seems as if its not as much as before.  She eats out of boredom.  The thing that kills me about the dex pulses is how horrible she feels.  She gets vincristine at the same time and that is the chemo that causes her the most pain, so the dex intensifies that. She doesn't understand and quite frankly, I don't know how to explain it.  She lays on the couch most of the time and has "dex" eyes.  they are dark sunken in eyes.  She doesn't sleep well.  But....we made it through another pulse!!  yay!!
We are on week 42 of treatment and at week 69 she goes to 1/2 dose of dex, and at week 100 no dex..so every pulse down gets us closer to our goal.
Whew!  that was a lot of typing the last few days...sometimes we get so busy I forget to keep you all updated so sorry to bunch it all into two days.  Well, I'm off to see what else comes up in our household that is unexpected....
PS...we did have an unexpected ER visit.  Lucy hit the corner of her eye on an end table JUST as Zach and I were walking out the door for a date last Friday night.  She is fine...and the only thing that was hurt was her pride.  We forgot to grab White to take to the ER with us...that was what crushed her.  She ended up with a nice shiner..we tried to teach her to that when people asked what happened to tell them "You should see the other guy".  She wouldn't.  She told them the truth...she said I was doing something I wasn't suppose to.  And we went on our date!!  We told her nice try to keep us home, but she'd have to come up with something a bit more serious next time  :)  I told you were weren't right sometimes....:F for empathy on that one...ha

Mr Becker has apologized

The entry I posted yesterday will not lead you to the original post made by Mr. Becker, but instead it will lead you to an apology by him. And of course a lot of back tracking and whys in regards to his original post.  Well, a little to late...a little to little a little to late actually.
The comment he makes is that he was trying to get the point across that social media should not be the means for bullying companies into doing things. I ask why not?  Social media is ran by individuals. It is run by you and me.  It's content is controlled by what we decide to blog, post, comment, or link to.  So in essence why shouldn't companies be bullied by the consumers?  Is it better to say a lobbyist is fighting for their company's best interests?  Wouldn't that too be considered bullying?  heck our government lives on bullying.  They want a bill to pass, they package it with a bunch of other little bills that have nothing to do with the original intent to get people to vote for their interests. And we call that politics?  So why does Mr. Becker and the ACS want to talk about social media and link the word bullying to it.  These mothers did no such thing.  They started a campaign, a petition, if you will.  They didn't ask Mattel to mass market a bald Barbie, they asked for it to be an option for purchase for those who may want it and to give proceeds to a worthwhile cause such as childhood cancer research.  And even if they did "pressure" Mattel, big deal.  Mattel is a big girl and Barbie wears big girl panties...sometimes.  Let them deal with their own image, brand, and press.  The only vested interest I can think of that the ACS had in this involvement was that they would not be the ones receiving the funds from it.
And one more thing, social media is here to stay.  And more and more smart companies recognize this and are using it to their advantage to advertise to young consumers, even us older consumers ;)  So to say this would not work is ridiculous. Actually, what it has done is brought WAY more attention to the issue than it would have gotten prior to the ACS's blog post.  And for Mattel's official statement to be something like "we don't take ideas from people for our products" is also insane.  What?  do you not know how capitalism works?  That wasn't their official statement, but pretty close.  And you know Barbie already has its issues with being disproportional to real life.  That bald barbie would fall right over cuz her boobs are too big!  So, maybe they need to rethink their marketing.  Anyhow, I've gone off track, like always.
The apology is way worse than the blog post.  I hope he got his ass chewed off when he went into the office today.  And I sincerely hope this brought more awareness to childhood cancer.  It is not rare, sad to say.  We had three new families in central Illinois come to clinic two weeks ago.  So while Lucy didn't even want a bald barbie, or any barbie for that matter, I still found his apology to be distasteful.  If you have an opinion, and you want to shout it out and have a huge company behind you to give you the means to do so, then do it, just make sure its exactly what you want to say, and how you want to say it.  oh....and do your research a little bit better too. Then stand behind your position.  Right or wrong.  I have a lot of opinions that I know people don't agree with, but if I feel strongly about it and can't be swayed any other way, I say it, and I stick with it.    That is all the time I will give this...I promise.  Good afternoon.

Disappointed with the ACS

We have had a busy few weeks, and I do have a lot to journal on.  Matter of fact, made myself a nice cup of chai tea, got my net book out, sat in my favorite chair and was ready to blog away this evening after the kids went to bed.  Then I read an article and it outraged me.  So now I must share with the world the article so you are free to form your own opinion.  I will not, however, be doing a relay for life team this year nor will I support ACS anymore.  I already knew 3% went to childhood cancer funding, and I knew that a huge amount of their monies are spent in administrative costs, but I still believed in their idea and the people that host and run relays.  And they covered a broad spectrum of the beast.  So while I knew they weren't the best organization out there, I still had hope for them.  Well, I think what little I had is gone.
here is why:  Bald Barbie Demand is an over reach

Let me tell you why this enraged me. The person who wrote this blog post and representing ACS has missed the point.  Not to mention they wouldn't profit off this. And childhood cancer is about as rare as breast cancer...in that it is NOT rare at all. And they are not asking Mattel to mass produce. they are asking for a specific audience for the product. I know the mothers who are campaigning for this and this made me have a little less respect for the ACS.

After I sleep off my rage, I promise to blog on more happy things and all things Lucy ;)  g'night friends