Rapunzel's got nothin on Sadie

Other than sadie being sick, her losing her hair was a big issue for me.  Not because I cared what she looked like, but I worried about how she would handle it and view herself.  Sadie is a huge fan of all the disney princesses, especially Rapunzel.  She has always loved her long pretty hair and wished that hers looked the same. She would sit at her vanity or whoever elses vanity for that matter, and fix her hair or put on make-up, or just stare at herself lol.  I didnt know how to break this to her.  No mother wants her daughter to be without hair, but I personally do not care what she looks like as long as I have her to look at.  This devastated me for her.  Sadies hair took forever to grow, and the only cut we ever did on her was a trim around her eyes.  I didnt know that the first lock of hair I would save from her first cut would be because of cancer.  A couple weeks into our first 30 day stay at the hospital, I cut it.  Not all the way off, but half way to off.  I did this for two reasons, one because I wanted her to gradually see it gone, and two because I wanted to take her hair, not fucking cancer drugs.  Shortly after we got home from our initial 30 day stay, I shaved it.  I felt like I had to.  It was super thin and falling out, so I thought shaving it would be less dramatic then her seeing it coming out.  I explained to her that the medicines she had to take to kill her cancer bugs, would make her hair fall out, but that it would grow back.  She would grab her hair and say no.  She was so upset.  My sis and all of sadies cousins, especially her girl cousin shaving thier heads helped tremendously.  It then became a good thing and the cool thing to do. They sent pictures, and took video of them getting their heads shaved.  This is when she let me shave it.  I let her make that decision on her own.  I wasnt as ballsy as my sis to shave my head, but I did cut most of it off.  Sadie tells me all the time that she misses my long hair, and my only response to her is that I cant wait to grow ours out together.  Sadie has grown very fond of her bald head.  In the beginning, she was a little self concious about it and would ask questions like: Mommy do you like my bald head?? Do you like to touch it?? Do you wanna touch it??  Is it so pretty??  It was like she was seeking reassurance.  Of course I really do like it, and I think she is the most beautiful girl in the whole world.  Hair, no hair, gray hair, I love her anyway I can have her.  And yes sadie girl, I love touching your bald head.  Who needs Rapunzel when I can have you.

Sadie on Steroids

Immediately after sadie was diagnosed, she was started on steroids twice a day for about 30 days.  We were told by the doctors and nurses that our child would no longer look like our child.  They were absolutely right.  The steroids changed her appearance drastically and the effects of the steroids lasted long after they were stopped.  She gained about 10lbs in a matter of weeks, and her face took on that "moon shape" that we were told was associated with these particular steroids.  I couldnt believe it.  The med made her so hungry that she was seriously waking up at 3:00am to eat.  She ate things that she had never tried in her life and things that she will probably never eat again. She got so big that it was hard for her to move her own weight.  At one point she couldnt even roll over or sit up by herself.  One day in particular she ate 14 sausage links within a few hours.  She would sit and eat whole jars of pizza sauce.  Food consumed her every thought. She could not get enough. If she saw food, she wanted it, even if it was on the way to your mouth.  If you wanted to keep your meal, you had to hide and eat it.  On the days that she had a procedure, she couldnt eat for so many hours before, and it was pure hell.  I can not express to you the chaos we experienced on these days.  She went from thin and sickly, to large and plump, and back again to thin and sickly.  Its nothing for her to not eat for days at a time now.  On those days, i kinda wish she was back on the steroids. 

Counts, Counts, & more Counts

sadie needed blood in this pic

In this and the following pics, sadie was in desperate need for a platelet tranfusion.  The night before these pics were taken, she went to bed with not a bruise on her.  The next morning I woke up and saw this.  These bruises multiplied and intensified in the short time it took us to get her to the hospital and transfused.  The bruises shown here are nothing compared to what they turned out to be that day.  Sadly, they actually look good in these pics. 

Sadie has a CBC with a DIFF done at least once a week and every morning at 5:00am during most hospital stays.  If she needs one done on one of her off chemo days when were not due in clinic, we go to a local lab like quest and they take the blood through a finger poke draw.  Usually the blood is taken through her port, but when we go local, they poke her finger and squeeze the blood out in a tube.  Naturally, she hates this, but she is so brave.  A CBC is a complete blood count and it measures things like her hemoglobin, red blood cells, etc.  The most important of these is her hemoglobin, platelet count and her white blood cell count.  We were given the warning signs to look for so we can pinpoint if any of these are low.  At first it was scary, and at times it still is being responsible for that, but we almost have it down to a science.  Counts change so quickly and rapidly from day to day, so ya never know what its gonna be tomorrow. Low hemoglobin makes you anemic, so your tired, pale, dizzy, no energy, fast heart rate, low oxygen. Low platelets as I said earlier make you bruise at the slightest touch and bleed internally and out.  Low white cells which are our infection fighting cells increase risk of infections, and cause fevers.  Any time throughout our treatment if Sadie runs a fever of 100.4 for more than an hour or has a single temp of 101.0 or higher, she has to come in to the hospital for at least a three day stay.  Blood is taken and cultured and antibiotics are started immediately.  Normal range for Hemoglobin is 11.5-13.5.  blood is transfused at a 7-7.5.  Sadies lowest has been a 6.5.  They try to hold out transfusing anything until the last possible moment because a persons body can either reject blood and/or platelets or become dependent on them.  Huge risks are involved when tranfusing anything.  A blood transfusion is supposed to last for up to two months, but when given to someone who recieves weekly sometimes daily chemo, the body eats it up within a few weeks.  Normal platelet range is 100,000-400,000.  Sadies lowest thus far have been at 8,000.  SEVERELY LOW.  Usually 20,000 is the transfusion mark unless bleeding and severe briusing occur before then.  Platelets are wierd, not everybody can donate them, and there life span is roughly 10 days.  If you have bone marrow that functions properly then thats not a problem because new ones would always be produced. In sadies case, her cancer starts in the bone marrow and affects its function.  A persons bone marrow produces all the cells and blood in ones body.  The point of the chemo is to continually suppress the bone marrow so the cancer doesnt have a chance to spread.  The medicine wipes her bone marrow out, lets it repair a little, and then shes wiped out again.  White blood cells are most important.  Normal range is 5.5K-15.5K.  Leukemia takes place when a single white blood cell becomes deformed in a sense and multiplies into blasts(cancer cells).  At diagnoses her white count was 40,000 but 80% of those were full blown blasts.  Her white count has been as low as 0.1.  This is where the DIFF part of the CBC comes in.  The DIFF (differential), tells me the morphology of her cells (size, shape, etc), and what her bone marrow is doing.  For example, we all have segs and bands.  These segs and bands tronsform into white cells.  Mono cells turn into segs and bands which then turn into whites.  The point of the Diff is to determine her ANC score.  An ANC score is our absolute neutrophil count.  Our neutrophils are our segs, bands, monos, etc.  An ANC tells us our immunity to infection. A healthy persons ANC is thousands, sadies has been at a 0.  The ANC is caculated by taking the white cell count, moving the decimal over one and multiplying it by the segs and bands.  So........say your white cell count is 14.2 and you have 40 segs and 20 bands.  Your 14.2 would become 142 after you move the decimal and that number would be multiplied by 60 cause thats the total of the bands and segs.  Your ANC would be 8,520.  You'd be kicking ass.  The ANC is so important.  Most cancer patients die of a secondary infection instead of the cancer itself.  When your white count is low and your ANC sucks, the risk of picking up an illness is huge.  Your common cold could be deadly to my liitle girl.  When it becomes too low and stays low, you can then infect yourself.  We all have bacteria on our skin, but it doesnt phase us, cause we have a white count and immunity.  Cancer patients dont, so there own skin can become a danger to them, as can there own insides (the intestines, the bowels, etc)  This is why Sadie cant be around other children, public places, groups of people.  We were told to not even take her out of her own environment for the risk of breathing in something airborn that you or I would not even know was there.  This is why im such a germaphobe, this is what I stress on, this is why I lose my mind.  Counts, Counts, Counts.  I talk alot about them and for those of you that take an interest in the logistic part of this will now understand what im talking about when i start rattling them off. Cant start chemo treatments unless we make certain counts, cant fight the cancer without the treatments.  Delays in treatment are scary.  There is then nothing there to suppress the bone marrow and keep the cancer away.  The majority of you are probably like what the hell did she just say???  I hate counts...............................

HD Methotrexate

Sadie had a really good day today.  She was in very good spirits, and extremely active.  I dont want to speak too soon, but this is the first time she hasnt gotten sick from her chemo treatments.  Now that I have spoke that aloud, its sure to happen.  I am contemplating deleting that lol.  Everything with cancer is based on counts. Its all numbers and levels.  She was done with her chemo at 6:00pm today. At that time a methotrexate (the chemo drug she just recieved) level was done through a blood draw. Its a calculation of the toxicity level in the blood for that specific chemo. Her level was at a 141 and we cant leave here until it is below a 0.10.  At 42 hours they will retest and start a med called leucovorin.  This med is used to help flush the chemo out of the body and acts as a protectant for the kidneys.  This is given every six hours until the correct, safe level is reached.  Retesting happens again at 48 hours, 6 hours after the leucovorin is started, and then again every 6-12 hours depending on the levels at the 48 hour mark. This pattern continues until cleared. As i said earlier, chemo drugs do not know the difference between good and bad cells, so they kill them all.  Rapid dividing cells such as your hair follicles, your mouth, and any mucous producing membranes take the hardest hit.  This is why cancer patients lose thier hair and get mouth sores. Mouth sores are a huge side effect of any chemo drug, but especially the methotrexate.  The longer its in the body the higher the risk and severity of sores. There is a special mouth wash that is used by cancer patients that helps prevent this, but its not a guarantee.  Methotrexate in high doses effects the liver funtion so sadies liver function tests have proved to be abnormal, but.............the doctors say the liver will repair itself after she stops recieving the HD methotrexate back-to-back.  We will see, if not then someone will face the wrath of me.   

The Jones's

Most people claim that there famalies are crazy, but mine really is.  If we could have a reality show, it would be a huge hit.  I cant complain too much though cause despite our differences, they are there when I really need them.  Before this happened with sadie, I wasnt on very good talking terms with the majority of them, but we all came together as a family should. I have made some, what other people would call "poor choices", but to each their own I believe.  I have learned that I have to live my life the way I choose and not how others want me to live it.  No two people are the same, so therfore my beliefs and how I live my life is almost always gonna be different than the person standing next to me.  Individuality is a gift from god to us all, and how we embrace that is at our own discretion.  The depths of this conversation and what I am referring to is for another day, so....... moving on........When sadie was diagnosed, my sister Shawnna had just concieved her 4th child. I didnt know this, for she did not want to tell me.  I wasnt supposed to have chldren, and the miracle that God did bless me with is now facing cancer, so I understand why she felt this way but I dont want her to. I want her to know that I am so happy for her and I cant wait to hold that little baby girl in my arms.  I am an aunt six times, almost seven and I love it.  I have 4 nephews and 2 nieces with one on the way.  I would die for any one of my sisters kids, and I know they would do the same for Sadie.  My oldest niece maddie really struggles with whats going on with sadie.  All of them do, but she especially has a hard time with it.  Even long before sadie was diagnosed, maddie was sending in her allowence and writing letters to places like St. Jude to help fight childhood cancer.  How ironic is that????  Her heart is huge!!!!!!!  She is only a child herself, but she understands it and for her to be faced with it through her baby cousin eats her up everyday.  Sadie doesnt see her cousins much anymore cause she has no immune system what-so-ever.  She has maybe seen them twice since she was diagnosed, but her heart is always with them.  She loves them all so much.  Everyone of them shaved there heads for little sadie girl, even my sister.  My family is so bad ass.  Cancer has truly changed our lives, and i know that everyone of them is struggling to get through this with me.  The mere mention of sadies name breaks them down in ways they never thought possible.  To you all, sadie has our blood and she will not go down without a fight.