Wow, its been a month since I blogged last?? That can't be right. I have so much stuff in my head that I guess I thought I wrote it down. Apparently not. Maybe that is why my stress level as seemed to escalate in the past few weeks. When I blog, whatever is floating in my head comes out on paper, its not gone, but it sure does feel better to expel the demons. So I don't quite recall where we left off on the Weber bad luck streak, as it seems to escalate more and more with the passing days! Plus I wish FB would chronicle everything in a nice cloud environment so I can keep track of our daily "incidents" so I can transfer those stories here. Even amongst all the chaos, we still have plenty of hilarious incidents. Lucy is definitely keeping us on our toes. That child has done every conceivable thing that I didn't think I would ever have to worry about as a parent!! Her level of mischievousness and orneriness outplays and outlasts Dennis the Menace any day of the week!
We have had the following happen in the past few months alone: She has taken her hand print and left it as a keep sake on our window sills with marker, she has painted one bathroom with toothpaste, the other with butt paste (yep you read that right), she found her birthday present (tea set) and had it laid out along with frozen fruit and all my chocolates while it was a Sunday nap and the rest of us were..well..napping. She found a dead mouse in her fan, we are assuming he was in her room because later we found food stashed under her pillow (again). We most recently found toilet paper all over...I mean rolls and rolls of it. Come to find out, they needed the tubes so they could play pirates. Yes, both of my children, but it was Lucy's idea to just take the TP off and hide it. She has taken my scissors, and as I found them in the kids' room, she has yet to fess up as to what they used them for. I'm sure we will find out soon enough. She has taken lotion, hand sanitizer, and make up from my bathroom and not only used it ALL but filled it up with water to make sure it lasted longer. She has nearly choked Taco to death by putting boas around his neck and making him play house with her. She took approx 100 tiny dixie cups from our cupboard and stacked them up to where they covered her ENTIRE room!!! And some were filled with water. And mind you, she is quick like Flash!! She can do these things like a ninja (or inja) as she calls it. I have to admit, she makes me laugh. She's a stink....but makes me laugh.
So back to the rest of the Webers. Zach had another surgery and it looks as if it took this time!!! yay!! He no longer drools out of the side of his cheek and down his neck...yes that was happening. He is finally back to work after I think 8 weeks off. And Jack's rash is gone from his HSP. We have to take him to the doctor every 4 weeks and get blood work because apparently the aftermath of this disease is kidney failure. Nice, huh? We also have to get his blood pressure checked ALL the time as that is another side effect. WTH? two kids with blood disorders...really? And a dog too!! We have had every test done to this house, but I strongly believe its the water. I don't care what the EPA says, when we put in a 10 grand system and our water still comes out brown because the owner of the well and the city has no regard for the safety of the citizens out in colonial meadows, the water cannot be safe to bathe in let alone drink. But that is another rant for another day.
So as I am "catching" up on everything, something has occurred to me. I remember reading about children who were in the last phases of treatment on their caringbridge and being so frustrated that they didn't post more often. We were in the beginning phases with Lucy, so I wanted to know what to expect or when to expect good things, so I would follow children who were nearly done with treatment. I also followed those who were knee deep into as well, but I wanted hope, I wanted to see the future, and it was frustrating that those parents did NOT keep up on their pages!! Well now I know why! I AM one of those parents. You know what happens? Life goes on. Life becomes a new normal. You suddenly feel consumed with everyday tasks again that once were not important at all, or you have found new tasks that have become EVEN more important. As is the case with me. I have found a new purpose and I actually know what I want to be when I grow up. FINALLY. And I realize that I have put the blogging and the updating on the back burner. Which isn't necessarily a good thing for my own psychological well being since I use this outlet as therapy a lot. And its not necessarily a good thing for other parents/families going through this because I'm not showing them that life does go back to a "normal". Its different, but yet the same. Counts, chemo, clinic, and all the things in childhood cancer become a part of everyday life. And I cannot honestly say whether that is a good thing or not, its sad in a way. But I will say this: We do get comfortable, and things become normal, until that day you wake up and see another child has died from cancer. A child who has the same kind as your child. A child who is in remission and close to being done with treatment and died from complications. A child who went into the hospital with a fever and never came home. Then you stand up and think "oh, shit! how could I get so comfortable?" Yes, that happens too. And it has happened to us recently. It scared the shit out of me, and still does. Makes me uneasy, and makes me cry. And to everyone out there who are just bystanders in this journey and offer support but do NOT have a child going through this, let me tell you that just because we have at times become comfortable, and we do go on with everyday life and fall off the grid from time to time, and that counts and chemo are an everyday part of life, nothing about his should ever be normal or comfortable and know that we are still fighting. No, we are not in phase 1 of treatment. Yes, the shock has worn off some....but I still find myself in quite a bit of shock or disbelief that this is happening. And we are still very much knee deep into this battle. Yes, its been 2 years. TWO YEARS! please don't forget about us because Lucy is doing well with treatment, or forget about us because after 2 years already we should be "used" to this, or after 2 years we should have adjusted. That's not how this works.
I have a friend who's child is OT (off therapy). Done! yay!! no more chemo!! but you know what? Her fear and her fight still goes on. She woke up this morning to her daughter having a fever. What does a cancer mom do? FREAK OUT! Then she stopped and she paused. And she said to herself "I have no idea what to do about a "normal" fever". That is when I realized that we may say we are living a new normal, but how wrong it is. Its not normal. It shouldn't even be a new normal. We are living....we are fighting...and nothing about it is normal. I will forever be afraid of a fever because of what it represents to us now, and what it can represent in the future. Fever is the first sign of childhood cancer. Our friend Logan walked into a hospital with a fever and never walked back out. A fever while nuetropenic is life threatening. A fever is not normal for us and probably never will be again
Thursday, November 29, 2012
Monday, November 5, 2012
What does the "F" word have to do with the "C" word?
Can I constructively create a blog post about cursing, without using a single curse word? THAT is my challenge. So there are times that I lose it. In this journey there are things that are going smoothly and there are still days that are horrid. It seems to be cyclical. Some occasions remind me of early diagnosis, and sometimes just seeing a picture of Lucy pre-cancer causes me to have a total meltdown either sad or angry. It is these times that I find it appropriate to have mini-meltdowns. Of course I don't do them in front of my children, and prefer to keep them to myself so that somebody doesn't admit me to the psych ward (even though Zach and I have often fought over who gets to go there first for a vacation). And during these meltdowns two things occur sometimes both at the same time: I cry or I cuss. I do neither quietly. I don't know what it is about cursing that makes me feel as if I have expelled the hurt, pain, fear, and sadness They are just words. Words can mean anything given in different context. But knowing they are discouraged from being used in the public, makes me feel better when I lose it.
Let me give you an example in case you are not quite following what I am saying. Ever seen National Lampoons Vacation? Christmas or the original? Clark is hilarious. He tries so hard to make things perfect for his family in his own twisted sort of way. But there comes a time when he finally realizes that everything is going down hill fast, and that is when he loses it. During these "spells or episodes", he is cussing and yelling and going off the deep end. Those are my most favorite parts of the movie. Why? Because that is SO me! ha! And I would quote what he says, but of course then I would lose my challenge about not using a single bad word in this post.
So where am I going with this? Well I belong to a group of other moms who are currently in the same situation as me. Their child has leukemia. We have this group that I mentioned in my book as being a "safe" group. It was a place where I could have mini meltdowns and still know that I wasn't being judged over it. And usually, when others had meltdowns, it made us all feel "sane". Like we weren't the only ones that found comfort in the bad words expelling from our mouth either with our voice or our pens. To so many, it was satisfying to them as well. After all, its not appropriate or even worth it for me to write down all my melt downs in my blog posts (there would definitely be over a million), and Team Lucy is a page of positive thoughts and information on her and her condition, not a place for me to "lose face". I loved this group, I coveted it, and it was like a special club that I didn't have to share with anybody but the mamas in it. Well, something happened to that club. It was growing and growing and growing. Which in itself is so sad to know that a group like that can grow so quickly in numbers when we are referring to kids with cancer. It no longer became intimate, and we were asked not to post our vents on their anymore as to not offend anyone. I can appreciate that. I really can, however, it doesn't mean I wasn't heart broken. Everybody deals with things in their own way, and to be told you aren't allowed to express yourself any longer the way your are accustom to and still feel safe, and to feel as if you are now being judged based upon it...well, it was a sad day for me. If I can no longer vent in the way I feel most comfortable in the safest place in the world, where can I do this? Where can I get out my frustration, anger, and even sometimes just a build up of petty little things?
When you are appealing to the masses and want to be part of group or organization and be popular, you have to have guidelines and please everybody. And that is not possible. You cannot please every person in a large group, but you can compromise. OR you can skip the vents or mothers who you don't align with based on certain values, and go to the ones who do share your views or even curse words here and there. Well, compromise did NOT happen, so I was more or less scolded and chose to remove myself from the group. I did not feel "safe" any longer. And it still baffles me that people who are going through the worst possible situation in their lives thus far were offended by language. By words. So What does the "F" word have to do with the "C" word??? They are both words. They are both dirty dirty words. They are horrible to say and feel yet one can be so satisfying to say in front of the other. Why?? and is it just me?? maybe....but I think its a double standard to say that one word is dirtier than the other. Considering the definition of both, its ironic that they basically mean the same thing!
Whew! For those of you wondering....yes, I have a new group for my safe place. And yes, I failed my original goal. I did not make it through this post without using a bad word. I said cancer way too many times!
Let me give you an example in case you are not quite following what I am saying. Ever seen National Lampoons Vacation? Christmas or the original? Clark is hilarious. He tries so hard to make things perfect for his family in his own twisted sort of way. But there comes a time when he finally realizes that everything is going down hill fast, and that is when he loses it. During these "spells or episodes", he is cussing and yelling and going off the deep end. Those are my most favorite parts of the movie. Why? Because that is SO me! ha! And I would quote what he says, but of course then I would lose my challenge about not using a single bad word in this post.
So where am I going with this? Well I belong to a group of other moms who are currently in the same situation as me. Their child has leukemia. We have this group that I mentioned in my book as being a "safe" group. It was a place where I could have mini meltdowns and still know that I wasn't being judged over it. And usually, when others had meltdowns, it made us all feel "sane". Like we weren't the only ones that found comfort in the bad words expelling from our mouth either with our voice or our pens. To so many, it was satisfying to them as well. After all, its not appropriate or even worth it for me to write down all my melt downs in my blog posts (there would definitely be over a million), and Team Lucy is a page of positive thoughts and information on her and her condition, not a place for me to "lose face". I loved this group, I coveted it, and it was like a special club that I didn't have to share with anybody but the mamas in it. Well, something happened to that club. It was growing and growing and growing. Which in itself is so sad to know that a group like that can grow so quickly in numbers when we are referring to kids with cancer. It no longer became intimate, and we were asked not to post our vents on their anymore as to not offend anyone. I can appreciate that. I really can, however, it doesn't mean I wasn't heart broken. Everybody deals with things in their own way, and to be told you aren't allowed to express yourself any longer the way your are accustom to and still feel safe, and to feel as if you are now being judged based upon it...well, it was a sad day for me. If I can no longer vent in the way I feel most comfortable in the safest place in the world, where can I do this? Where can I get out my frustration, anger, and even sometimes just a build up of petty little things?
When you are appealing to the masses and want to be part of group or organization and be popular, you have to have guidelines and please everybody. And that is not possible. You cannot please every person in a large group, but you can compromise. OR you can skip the vents or mothers who you don't align with based on certain values, and go to the ones who do share your views or even curse words here and there. Well, compromise did NOT happen, so I was more or less scolded and chose to remove myself from the group. I did not feel "safe" any longer. And it still baffles me that people who are going through the worst possible situation in their lives thus far were offended by language. By words. So What does the "F" word have to do with the "C" word??? They are both words. They are both dirty dirty words. They are horrible to say and feel yet one can be so satisfying to say in front of the other. Why?? and is it just me?? maybe....but I think its a double standard to say that one word is dirtier than the other. Considering the definition of both, its ironic that they basically mean the same thing!
Whew! For those of you wondering....yes, I have a new group for my safe place. And yes, I failed my original goal. I did not make it through this post without using a bad word. I said cancer way too many times!
Let's add another acronym to the list!!
Wow! so I would say this past week was just about as nerve racking and busy as the previous two weeks. I swear it feels like a month has passed since I posted last. Well, Jack ended up having a horrible horrible rash on his legs, it got so bad that we had to take him to the ER at the Children's Hospital in Peoria. I was NOT going to deal with the ER here in town again. We had found out since our trip, Jack had blood in his urine, something that the ER failed to tell us and something they let us go home with. We were certain he had HSP, which is a rare autoimmune blood disorder. It was something I mentioned on day 1 at the ER and was dismissed in a hurry. HSP can only be serious if it attacks the kidneys, which blood in the urine is the first indication. So I was livid when I found out about that and nobody bothered to tell us. Anyhow, the second we went in the hospital, they said immediately upon arrival, he had HSP. Before blood work or anything, just based on his symptoms, they were certain of it and would do tests to confirm. They gave him anti itch medicine because at this point, his legs were so swollen and the rash was ALL over and he was in pain. They took care of his needs right away. As they did the blood work and was waiting for the urine cultures to come back, they felt like it was serious enough to make him stay all night. They wanted to observe him. Oh, and I had taken him back to prompt care on Saturday because he had another different rash and his throat looked horrid, so in the middle of all of this he got strep throat. Normally, HSP can be brought on by strep, but Jack just happened to GET strep while having HSP...the doctors told Zach "lucky you". So that was last Sunday. Zach had to reschedule his surgery for Monday because he was overnight with Jack. Monday afternoon, they released Jack with the official diagnosis of HSP and sent him home with pain meds and anti-itch medicine as his legs were so bad that benadryl didn't even cover it :( That night was horrible. He was so uncomfortable. He cried all night :(
So Wednesday (2 days later), he finally felt comfortable enough to go back to school. And that same day Zach had surgery at 6 am and Lucy had clinic, plus it was Halloween. Wow! Talk about a packed day. Zach's mom came in to take him to surgery, and I got the kids ready for school and clinic. That was a looong morning. Lucy was fighting me on everything. She has had some real discipline issues lately. It got so bad that she was hitting me and calling me names. I gave her several warnings, and finally had to pull out the big guns. I told her I would take away her Halloween costume if she didn't stop, she said she didn't care and continued to battle me on going to clinic. So, I took it away. Then I told her she was not going to get to go Trick or Treating. Again, she was still hitting and said she didn't care. All of this over wearing pants. She continued to hit and yell, so I dressed her and finally put her in the car. We dropped Jack at school and headed to Peoria for clinic. She calmed down finally once we got there, and don't think she didn't let all of the nurses know that mommy threw her costume in the garbage! hahaha We were over 2 hours late to clinic due to her escapades. So she ended up missing school. Zach was home from surgery once we got home from clinic. Doc said that he thought things went well and we would have to wait a week to see. That night, trick or treating came.....guess who didn't get to go??? yep! I stuck to my guns. It was hard, but she had been so deviant, I had to make a lasting punishment stick. The first thing Dr Pui told us when we were admitted is that she WOULD get better and that if we stopped disciplining, we would have a monster on our hands. And Lucy, by nature, was already a stubborn little girl and full of mischief, the cancer just added fuel to that fire. It was the hardest thing to walk out the door without her. But I have to say, not only did Jack and I get some much needed one/one "normal" time, she learned her lesson. So much so that we had a radio interview the next day, and when asked about Halloween, she said she didn't get to go trick or treating because she made bad choices!! lol!! I'm sure the audience was like "what a horrible mother not letting the cancer kid go trick or treating". But that is just the thing..she has cancer, she's not immune to discipline. I had someone comment on her Team Lucy page that I would "regret not letting her go if anything were to happen to her". I had to ban that person. Sorry, but I'm the parent, and first, I don't need advice on how to raise my child, and second, why would you even say anything about "if something happens". That something could be anything in life, regardless of the cancer, but we don't stop disciplining our children over it. It was trick or treating, I didn't lock her in a room with no food! And no negative posts are allowed that encourage that type of thinking anyhow "what ifs" are NOT allowed.
That was last week, and this starts a new week of chaos. Unfortunately, Zach went back to the doctor and he is NOT healing the way they wanted. He is still having saliva come out the side of his cheek (on the outside, as in running down his neck). So the doctor told him to sit still for the next week and do NOTHING! Its driving him crazy, but he's also scared about what his options are for a 3rd surgery. It has a great risk of causing facial paralysis. We really hope we can try something else, as our luck isn't the best, and we would just assume NOT have to go there. We go back to the doc tomorrow for him, so we shall see what it brings. Jack seems to be completely better, and Lucy is picking fights, so I assume she is healthy! lol As healthy as a cancer kid can be anyhow.
So to sum this up....I'm so tired of all the medical acronyms we get to add to our list. HSP was definitely NOT what we were looking forward to, but its better than Cancer.
So Wednesday (2 days later), he finally felt comfortable enough to go back to school. And that same day Zach had surgery at 6 am and Lucy had clinic, plus it was Halloween. Wow! Talk about a packed day. Zach's mom came in to take him to surgery, and I got the kids ready for school and clinic. That was a looong morning. Lucy was fighting me on everything. She has had some real discipline issues lately. It got so bad that she was hitting me and calling me names. I gave her several warnings, and finally had to pull out the big guns. I told her I would take away her Halloween costume if she didn't stop, she said she didn't care and continued to battle me on going to clinic. So, I took it away. Then I told her she was not going to get to go Trick or Treating. Again, she was still hitting and said she didn't care. All of this over wearing pants. She continued to hit and yell, so I dressed her and finally put her in the car. We dropped Jack at school and headed to Peoria for clinic. She calmed down finally once we got there, and don't think she didn't let all of the nurses know that mommy threw her costume in the garbage! hahaha We were over 2 hours late to clinic due to her escapades. So she ended up missing school. Zach was home from surgery once we got home from clinic. Doc said that he thought things went well and we would have to wait a week to see. That night, trick or treating came.....guess who didn't get to go??? yep! I stuck to my guns. It was hard, but she had been so deviant, I had to make a lasting punishment stick. The first thing Dr Pui told us when we were admitted is that she WOULD get better and that if we stopped disciplining, we would have a monster on our hands. And Lucy, by nature, was already a stubborn little girl and full of mischief, the cancer just added fuel to that fire. It was the hardest thing to walk out the door without her. But I have to say, not only did Jack and I get some much needed one/one "normal" time, she learned her lesson. So much so that we had a radio interview the next day, and when asked about Halloween, she said she didn't get to go trick or treating because she made bad choices!! lol!! I'm sure the audience was like "what a horrible mother not letting the cancer kid go trick or treating". But that is just the thing..she has cancer, she's not immune to discipline. I had someone comment on her Team Lucy page that I would "regret not letting her go if anything were to happen to her". I had to ban that person. Sorry, but I'm the parent, and first, I don't need advice on how to raise my child, and second, why would you even say anything about "if something happens". That something could be anything in life, regardless of the cancer, but we don't stop disciplining our children over it. It was trick or treating, I didn't lock her in a room with no food! And no negative posts are allowed that encourage that type of thinking anyhow "what ifs" are NOT allowed.
That was last week, and this starts a new week of chaos. Unfortunately, Zach went back to the doctor and he is NOT healing the way they wanted. He is still having saliva come out the side of his cheek (on the outside, as in running down his neck). So the doctor told him to sit still for the next week and do NOTHING! Its driving him crazy, but he's also scared about what his options are for a 3rd surgery. It has a great risk of causing facial paralysis. We really hope we can try something else, as our luck isn't the best, and we would just assume NOT have to go there. We go back to the doc tomorrow for him, so we shall see what it brings. Jack seems to be completely better, and Lucy is picking fights, so I assume she is healthy! lol As healthy as a cancer kid can be anyhow.
So to sum this up....I'm so tired of all the medical acronyms we get to add to our list. HSP was definitely NOT what we were looking forward to, but its better than Cancer.
Monday, October 22, 2012
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 :(
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 :(
Wednesday, October 3, 2012
Hey, Mr. President!! Let's see that White House light up Gold!
I have been MIA for a while. Not on purpose, just been so busy with lots of activities, home life, and work. Seems like I get to bed around midnight or 1 and am up again around 6 or 7 am and going non-stop lately. I'm not complaining, it helps to keep me busy and my mind busy. I have less a need to blog or journal when I don't have time to sit and think and stew over what's going on. Well today, I hit a road block. I have a million and one things to do, and all I can think about is how much I am hating cancer today. Specifically, childhood cancer.
We have a lot going on. My uncle passed away almost 2 weeks ago in a tragic construction accident, Zach had surgery and its not healing well. Lucy has a horrid cough and today at clinic, her port was NOT cooperating, and poor poor Jack. He has a lot of stuff going on emotionally and is acting out. We can't seem to get him to talk to us about it. I think we need a private family vacation for a weekend in the Dells. Oh yea.....we CAN'T!! why?? Because cancer is an asshole. And we can't go that far from St Jude, and the environment is not "cancer friendly". Ok, now I'm complaining...maybe even whining a bit.
The only thing I have been seeing on Facebook for the past week is how many of our precious children have lost their battle to cancer. OR how many are in the fight for the life at the buzzer. OR how many literally have a short amount of time left on this earth. What a horrible thing to see everyday, and yet, I don't block the posts, I share the statuses, and I cry. No I am NOT a Debbie downer when I share these posts, I'm a realist. Whether or not you want to see it, its happening. Whether or not it is in your immediate circle, children are dying every day from a disease that is seriously lacking funds in the childhood arena. Cancer is the number 1 killer of children, yet its rare?? For every dollar that goes to ACS for cancer research, a penny goes to the kids. There has been ONE drug developed specifically for childhood cancer in the past 60 years, the children have to take adult chemos, yet the White House lit up Pink the first day of October. No gold for September.
I know a little girl, Alivia, who has 30-90 days left to live because of a horrible brain tumor that has no cure or even treatment, and lost another one of our friend's child, Julian, to the same disease because there is NOT enough money to fund a treatment cure, and yet I walked into Kroger and was saturated with Pink. Please do not mistake that I think there is anything wrong with Pink. They have done a successful job of branding breast cancer. They have done a successful job of raising awareness and funding for cures that were unheard of even just 10 years ago. They have saved lives of my friends and family. No, I do not hate the Pink. I do not hate what it represents. I embrace it. I am just pissed off that its so branded and marketed that companies use it to make money, period. Do NOT mistake their marketing for good will (not most of them). They are selling you Pink for one reason. You will buy it. And they will make money off of it. When presented with an opportunity to help Brand Gold, most companies have politely said "no thank you". People don't want to see bald kids. It makes them sad, and sadness does not create a buying need subconsciously for people, thus they feel sales may be lacking for their product if they "Go Gold" for that reason. I understand, they run a business, they need to make money. But duh! Pink didn't use to make money either. Breast cancer was something that was NOT said outloud. It was a dirty word and not to be discussed unless behind closed doors. Women died in hospitals from it not at home. The chance for a cure after a relapse was slim to none, now the percent is high. Have you seen "Terms of Endearment?" That is how the face of breast cancer used to be. So kuddos to them for Branding their pink, and bringing conversations out to talk about it and get companies to help with their branding efforts. NOW people start doing the same for the kids. These little girls don't even have time to grow up to have boobs. Or the little boys don't have time to oogle over them. If you can't survive childhood cancer, you have no opportunity to even care about boobs. And I want our children to care about boobs!
Lane Goodwin has gotten all sorts of thumbs up from people around the world, including numerous public figures and celebrities. They are telling him to fight the fight. Now why don't you take that thumb, and put it to work. Go put in your pin number at the ATM, and send some money to Curesearch. Use that thumb to dial some numbers of connections you have to take childhood cancer to the next level of awareness. I know Lane appreciates the support as does his family, but do you really read their story??? I mean REALLY read it? Lane is dying. Lane is dying from a horrible disease that is lacking in research funds. Yes, I said it. I said it out loud! Stop hushing about it and whispering. Do you not think anybody knows this?? Think his parents don't think about it EVERY single second of every single day? Say it! shout it! be mad about it! And then do something about it. It cannot just be us cancer families promoting gold. We need your help. We need to stop whispering, pointing, grieving in private. We need to start yelling and shouting in public.
Somebody PLEASE ask the White House to Light up with GOLD!!!!!!! And then we can all send them our "thumbs up" for helping us to brand our disease so maybe a company will latch on a little tighter and makes some money and go Gold permanently in September. That is the kind of money we need, and that is the kind of exposure we need to raise it.
Thumbs up...Lane and Alivia. Your life will not go unnoticed and you will not die in vain. I promise that! Even if I have to spend my life making it so.....
We have a lot going on. My uncle passed away almost 2 weeks ago in a tragic construction accident, Zach had surgery and its not healing well. Lucy has a horrid cough and today at clinic, her port was NOT cooperating, and poor poor Jack. He has a lot of stuff going on emotionally and is acting out. We can't seem to get him to talk to us about it. I think we need a private family vacation for a weekend in the Dells. Oh yea.....we CAN'T!! why?? Because cancer is an asshole. And we can't go that far from St Jude, and the environment is not "cancer friendly". Ok, now I'm complaining...maybe even whining a bit.
The only thing I have been seeing on Facebook for the past week is how many of our precious children have lost their battle to cancer. OR how many are in the fight for the life at the buzzer. OR how many literally have a short amount of time left on this earth. What a horrible thing to see everyday, and yet, I don't block the posts, I share the statuses, and I cry. No I am NOT a Debbie downer when I share these posts, I'm a realist. Whether or not you want to see it, its happening. Whether or not it is in your immediate circle, children are dying every day from a disease that is seriously lacking funds in the childhood arena. Cancer is the number 1 killer of children, yet its rare?? For every dollar that goes to ACS for cancer research, a penny goes to the kids. There has been ONE drug developed specifically for childhood cancer in the past 60 years, the children have to take adult chemos, yet the White House lit up Pink the first day of October. No gold for September.
I know a little girl, Alivia, who has 30-90 days left to live because of a horrible brain tumor that has no cure or even treatment, and lost another one of our friend's child, Julian, to the same disease because there is NOT enough money to fund a treatment cure, and yet I walked into Kroger and was saturated with Pink. Please do not mistake that I think there is anything wrong with Pink. They have done a successful job of branding breast cancer. They have done a successful job of raising awareness and funding for cures that were unheard of even just 10 years ago. They have saved lives of my friends and family. No, I do not hate the Pink. I do not hate what it represents. I embrace it. I am just pissed off that its so branded and marketed that companies use it to make money, period. Do NOT mistake their marketing for good will (not most of them). They are selling you Pink for one reason. You will buy it. And they will make money off of it. When presented with an opportunity to help Brand Gold, most companies have politely said "no thank you". People don't want to see bald kids. It makes them sad, and sadness does not create a buying need subconsciously for people, thus they feel sales may be lacking for their product if they "Go Gold" for that reason. I understand, they run a business, they need to make money. But duh! Pink didn't use to make money either. Breast cancer was something that was NOT said outloud. It was a dirty word and not to be discussed unless behind closed doors. Women died in hospitals from it not at home. The chance for a cure after a relapse was slim to none, now the percent is high. Have you seen "Terms of Endearment?" That is how the face of breast cancer used to be. So kuddos to them for Branding their pink, and bringing conversations out to talk about it and get companies to help with their branding efforts. NOW people start doing the same for the kids. These little girls don't even have time to grow up to have boobs. Or the little boys don't have time to oogle over them. If you can't survive childhood cancer, you have no opportunity to even care about boobs. And I want our children to care about boobs!
Lane Goodwin has gotten all sorts of thumbs up from people around the world, including numerous public figures and celebrities. They are telling him to fight the fight. Now why don't you take that thumb, and put it to work. Go put in your pin number at the ATM, and send some money to Curesearch. Use that thumb to dial some numbers of connections you have to take childhood cancer to the next level of awareness. I know Lane appreciates the support as does his family, but do you really read their story??? I mean REALLY read it? Lane is dying. Lane is dying from a horrible disease that is lacking in research funds. Yes, I said it. I said it out loud! Stop hushing about it and whispering. Do you not think anybody knows this?? Think his parents don't think about it EVERY single second of every single day? Say it! shout it! be mad about it! And then do something about it. It cannot just be us cancer families promoting gold. We need your help. We need to stop whispering, pointing, grieving in private. We need to start yelling and shouting in public.
Somebody PLEASE ask the White House to Light up with GOLD!!!!!!! And then we can all send them our "thumbs up" for helping us to brand our disease so maybe a company will latch on a little tighter and makes some money and go Gold permanently in September. That is the kind of money we need, and that is the kind of exposure we need to raise it.
Thumbs up...Lane and Alivia. Your life will not go unnoticed and you will not die in vain. I promise that! Even if I have to spend my life making it so.....
Friday, September 28, 2012
Jillian (Jilly Bean)
Jillian is 2, nearly three. She was diagnosed with ALL on 12/23/11. Just two days before the most magical day of the year! I'll never forget that day. We thought Jillian had a cold. She went to a regular sick appt at her pediatians office. Something just wasn't right...bloodwork...admit...
Enters..Dr Razzouk.
Now, her life is...many pokes, many chemo days, long office visits, a new diagnosis due to toxicuty from chemo drugs, numerous days of inpatient stays at Peyton Manning Children's Hospital..with many more days to go...over a two years of total treatment! ...Not to mention all the continued care she will have to endure! But, WE ARE STILL STRONG!
Jillian amazes us! Our hero!
Find A Cure! Be Aware!
To follow our journey...
www.caringbridge.org/visit/
Follow her on Facebook.. Jilly Bean and the Fight of her Life
Also, google search: Jillian Miller Indianpolis Star Jan 2012 Cover Story
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Thursday, September 20, 2012
Zachs surgery
Just wanted to post a quick update about zach. His surgery was suppose to take 3 hrs, ended up being 6!! I was anxious and worried around the 4th hr. simply out of my mind by the 5th, and ready to come unglued by the 6th!!
Finally the doc came out and said everything went well, just took longer than expected because they wanted to be extra careful with the facial nerves. Plus he had what we thought was a fatty tumor removed from his forehead, in fact it was not! It was a sebaceous cyst. It took doc over an hour just to remove that!!! He said it had grown all the way to his skull and was branching out. Ewww!!! That's gonna leave a mark!!! Doc also said nothing looked suspicious, but they are sending it all off to pathology to be sure. Not sure how long before that comes back.
They also had a heck of a time managing his pain, plus they gave him zofran, we forgot to tell them he reacts badly to that. Didnt know it was a drug they were going to give him. So he was horribly dizzy. After they gave him all the pain Meds that they could, we came home.
He was in tons of pain all night :( we had Vicodin, but he could only take it every 4 hrs. Around 11, I was headed to bed (he had to sleep head up in the recliner), he ended up throwing up for a while. I felt horrible for him. It was all the Meds and no food. But everytime he tried to eat, his salivary glands would kick in overdrive causing him more pain.
Today, we go back to see the doc. Originally, it was to be Friday, but since the cyst on his head was so deep, he wanted to see him today. As for healing time, doc said it would take him around 6 weeks!!! Wow!! And during that time all sorts of fun nerve crap will happen. I'm sure pathology is fine, but as soon as I find out, I'll post it!! Thanks for all the support yesterday! Oh and did I mention, it's dex week!! Ha!!! Fun fun!!
Finally the doc came out and said everything went well, just took longer than expected because they wanted to be extra careful with the facial nerves. Plus he had what we thought was a fatty tumor removed from his forehead, in fact it was not! It was a sebaceous cyst. It took doc over an hour just to remove that!!! He said it had grown all the way to his skull and was branching out. Ewww!!! That's gonna leave a mark!!! Doc also said nothing looked suspicious, but they are sending it all off to pathology to be sure. Not sure how long before that comes back.
They also had a heck of a time managing his pain, plus they gave him zofran, we forgot to tell them he reacts badly to that. Didnt know it was a drug they were going to give him. So he was horribly dizzy. After they gave him all the pain Meds that they could, we came home.
He was in tons of pain all night :( we had Vicodin, but he could only take it every 4 hrs. Around 11, I was headed to bed (he had to sleep head up in the recliner), he ended up throwing up for a while. I felt horrible for him. It was all the Meds and no food. But everytime he tried to eat, his salivary glands would kick in overdrive causing him more pain.
Today, we go back to see the doc. Originally, it was to be Friday, but since the cyst on his head was so deep, he wanted to see him today. As for healing time, doc said it would take him around 6 weeks!!! Wow!! And during that time all sorts of fun nerve crap will happen. I'm sure pathology is fine, but as soon as I find out, I'll post it!! Thanks for all the support yesterday! Oh and did I mention, it's dex week!! Ha!!! Fun fun!!
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