Just so you know my original plan of my blog was to start from the beginning and go until present. However the F word has messed that up for me. I do not mean the word you think! I mean fevers, as a cancer mom that is the worst word in the dictionary. Well that and the N word aka Neutropenia. Well guess what? Kin has both this week.
What started as bronchitis and ear infection did not seem to be getting better. Then the F word came. The first time her counts were decent enough she did not have to be admitted. That did not last long after a Sunday full of a lethargic child and a fever popping up in the evening, a trip to the ER it was.
I debated going to urgent care with her but since I was just there the night before and was not highly impressed. After being there an hour or so and throwing a fit the Dr. came in. I was then told she needed blood work and I explained she had a port could they use that. I was then told that they could. However, the nurse still brought in all the stuff to draw from the arm. I had to explain again she had a port and she needed that to be used.
Yeah there idea of accessing a port = no numbing cream.
They also don't have a pediatric needle, and the needle they do have looks huge and scary!
Anyway after about 30 minutes of me calming down my kid in hysterics it got done very painfully! GRR!
They leave it taped in away she can't really move because they don't know what the hell they are doing obviously. Moving on, I asked if they needed a new chest x-ray and they never did one so I guess they didn't see fit and started her on another antibiotic and sent us home.
That means Sunday I drove the hour to Childrens Hospital Los Angeles(CHLA). We get checked in and tylenol for her fever immediately. They immediately put us in a room and add some numbing cream to her port area. It is such a different experience. These nurses and doctors here really do try to make things as comfortable for kids as possible. So they started an IV and did all their cultures and checked her counts and they said her counts were too low, she would be admitted.
To most people this would be bad news. Don't get me wrong I HATE that she is in the hospital but relieved that they are able to monitor her here. My nerves are not so on edge about things. I feel like for the last week or so all I have been doing is debating a trip to the Dr. or taking her to urgent care. So yeah while I hate being here I am glad they know what they are doing.
So we got to our room at 4:00 in the morning. At about 4:45 a.m. I left and went to work for the day. Another dilemma of a cancer-mom. We need to keep our jobs and pay our bills and take care of our kids at the same time. Today I took off half from feeling bad for leaving her yesterday and half from pure exhaustion. Didn't really sleep last night and well Sunday night that was pretty much impossible, though I tried to grab a nap in the ER. Today is a day of just waiting and watching. I totally could have gone to work. So tomorrow I will stop hovering and go to work. Just pray I get a couple hours of sleep tonight!
She keeps spiking random fevers, breaking them as quick as they come on. She for sure has RSV and waiting on a few other things to come back I believe. Hoping that when it happens its negative and she beats this soon! I called the school for all her work for the week it may end up being 2 weeks if these fevers don't stop.
Tuesday, February 28, 2012
Saturday, February 25, 2012
My child has what?
On Sunday January 23, 2011 we went to a follow-up appointment at urgent care. I fully expected the doctors to confirm the diagnosis of Mono and tell us we were doing all the right things. We arrived at urgent care and they did the blood work they had been doing for days. About 90 minutes later, they said they needed to do another draw to double check something. So they drew blood again and put her on IV fluids.
As we waited for the blood work Kinley slept. About another hour or so later the doctor came in to see us. You know in the movies where you are in a doctor's office and the doctor acts like he is as devastated as you?! Yeah FALSE! We were in the urgent care infusion area, with several people around as my daughter slept on their little gurney, I was told we think it's Leukemia. They went into the fact that the reason they had drawn blood a second time is the first draw was 78,000 , the second result was 99,000.
The doctor then told me as my child slept that we would be transported to the hospital about 2 blocks away by ambulance. We would be seen by a doctor there who had already been consulted and they were pretty sure it was Acute Lymphocytic Leukemia. I remember calling James and telling him words I never imagined saying. I asked him to meet us at the hospital with clothes and stuff for Kin and myself.
Once the ambulance company arrived, we woke my daughter up to try to explain a little of what was going on. When we arrived at the hospital they asked us all the questions they needed to know the answers to. We were told Kin would receive a CT scan and then we would be waiting on transportation to Childrens' Hospital Los Angeles. It was all so technical and a whirlwind all at the same time.
At the hospital she was so poked and prodded so many times, so many blood draws, a new IV because they couldn't use the one that the urgent care put in even thought that was the point of the urgent care adding the one they had. They were definitely not kid friendly. We were then sent for the CT scan which later would show an enlarged liver and spleen causing the rib pain she had been complaining about. The white blood cell (WBC) was rising even more so. After that it was just a lot of waiting pretty much for the transport to get there and take us down.
At CHLA, I kept asking the doctor what the chance of them being wrong was. They kept telling me they wouldn't have any real answers until the next day. We left her that night with her father as James and I went and tried to get a couple hours of sleep. I was hoping I would wake up in the morning and go in and they would tell me they were all wrong. Sadly that was not so..
As we waited for the blood work Kinley slept. About another hour or so later the doctor came in to see us. You know in the movies where you are in a doctor's office and the doctor acts like he is as devastated as you?! Yeah FALSE! We were in the urgent care infusion area, with several people around as my daughter slept on their little gurney, I was told we think it's Leukemia. They went into the fact that the reason they had drawn blood a second time is the first draw was 78,000 , the second result was 99,000.
The doctor then told me as my child slept that we would be transported to the hospital about 2 blocks away by ambulance. We would be seen by a doctor there who had already been consulted and they were pretty sure it was Acute Lymphocytic Leukemia. I remember calling James and telling him words I never imagined saying. I asked him to meet us at the hospital with clothes and stuff for Kin and myself.
Once the ambulance company arrived, we woke my daughter up to try to explain a little of what was going on. When we arrived at the hospital they asked us all the questions they needed to know the answers to. We were told Kin would receive a CT scan and then we would be waiting on transportation to Childrens' Hospital Los Angeles. It was all so technical and a whirlwind all at the same time.
At the hospital she was so poked and prodded so many times, so many blood draws, a new IV because they couldn't use the one that the urgent care put in even thought that was the point of the urgent care adding the one they had. They were definitely not kid friendly. We were then sent for the CT scan which later would show an enlarged liver and spleen causing the rib pain she had been complaining about. The white blood cell (WBC) was rising even more so. After that it was just a lot of waiting pretty much for the transport to get there and take us down.
At CHLA, I kept asking the doctor what the chance of them being wrong was. They kept telling me they wouldn't have any real answers until the next day. We left her that night with her father as James and I went and tried to get a couple hours of sleep. I was hoping I would wake up in the morning and go in and they would tell me they were all wrong. Sadly that was not so..
Thursday, February 23, 2012
EFF YOU CANCER!! EFF YOU!!!
Yeah I said it! Last night a little boy lost his battle to cancer. He earned his wings. God gained another angel. All appropriate things to say and while yes I am glad he is no longer in pain. He should have never felt that pain to begin with. We have seen so much of this since my daughter began her fight 1 year and 1 month ago.
I like most of you was oblivious to cancer before it came and slapped me in the damn face. Since then my family has met so many other families dealing with this horrible disease. So many have not been as lucky as we have. Each time a life is lost I feel so many emotions sadness, relief, guilt all at the same time. I pray for these families daily. I hope for a miracle but know that when there is cancer, death is always right there. Days like today throw things in my face to remind me we are not safe.
I would like to think when Kin makes it to her 5 year remission mark I will breath a sigh of relief and know she is okay then. Truth is, it is not always okay, there is no safe. There is that chance, it is a lottery and we were the lovely frickin winners! Now every time my "healthy kid" gets sick my mind goes there. My sons had a few tummy aches lately, the non-cancer mom says hes faking. The cancer mom says what if I ignore this and something happens.
It is not fair, it is not right! No one I mean NO ONE should have to live like this. Yet we do, we live like everyone else. Okay maybe not like everyone else you know. We do not get the luxury of waiting out a fever. My kid gets a cough a little longer than others, and I think pneumonia. Right now she is fighting an ear infection that keeps lingering even that is bothering me. So I just want to say EFF YOU CANCER I WANT MY LIFE BACK!!
I like most of you was oblivious to cancer before it came and slapped me in the damn face. Since then my family has met so many other families dealing with this horrible disease. So many have not been as lucky as we have. Each time a life is lost I feel so many emotions sadness, relief, guilt all at the same time. I pray for these families daily. I hope for a miracle but know that when there is cancer, death is always right there. Days like today throw things in my face to remind me we are not safe.
I would like to think when Kin makes it to her 5 year remission mark I will breath a sigh of relief and know she is okay then. Truth is, it is not always okay, there is no safe. There is that chance, it is a lottery and we were the lovely frickin winners! Now every time my "healthy kid" gets sick my mind goes there. My sons had a few tummy aches lately, the non-cancer mom says hes faking. The cancer mom says what if I ignore this and something happens.
It is not fair, it is not right! No one I mean NO ONE should have to live like this. Yet we do, we live like everyone else. Okay maybe not like everyone else you know. We do not get the luxury of waiting out a fever. My kid gets a cough a little longer than others, and I think pneumonia. Right now she is fighting an ear infection that keeps lingering even that is bothering me. So I just want to say EFF YOU CANCER I WANT MY LIFE BACK!!
Growing Pains, Stomach Flu, Mono?
On January 16, 2011 I took my daughter to the doctor because for about a week she complained of some rib pain. No big deal right? It was cold out, she was a pre-teen, doing PE outside. The doctor chalked it up to growing pains or irritated ribs from exercising. Two days later we are at Disneyland "Happiest Place on Earth". My daughter was barely eating. Again no big deal, excitement, tired, so many other reasons.
She barely at anything that day and stayed home from school the next. She was not eating much at all. We were lucky if we could get her to eat broth. By Thursday she was not much better very lethargic and not eating. I took the day off work. I figured I would take her to see the doctor at our local Urgent Care and rule out something that needed to be treated. I honestly figured it had to be a stomach bug and they were going to just send us home, maybe give her some fluids.
The doctor took one look at her, didn't like it, and ran blood work. Her white blood cells were 25,000. I asked what normal range was and he said 5 to 15k but because she was sick it was not that alarming. He also started an IV for fluids and more antibiotics. She was sent home with a follow-up appointment for the next day. On Friday we returned, he gave more antibiotics, did more blood work. Her white blood cells were now 34,000. Doctor again said no reason to be alarmed she was just fighting an infection.
The next thing he did was test for mono, you know good old kissing disease. The test he did at clinic came back negative but he told me 10 % of those after further tests end up being positive. At this point I knew her platelets were low, her white blood cells were high. I also knew that my child had not been awake much in the last two days. I had also noticed at this point she had some tiny red marks on her almost like broken blood vessels. After he exhausted his testing there and she received antibiotics we were sent home with a follow-up appointment made for Sunday.
I never thought I would pray for a diagnosis of Mono before. However, that is exactly what I was doing. I was also using the internet to find all possible information. Asking friends who had mono or had kids with mono. My child was now only waking up if I woke her up and not staying awake at all. I was lucky if I could get her to drink 1/2 of a Pediasure a day. Everyone was telling me this is just mono, the exhaustion is just so overpowering. I kept thinking over the weekend it was just mono because any other diagnosis was unthinkable. Within 5 days my child was disappearing before my eyes. She was not her bright energetic self and I was unsure what was going to happen.
She barely at anything that day and stayed home from school the next. She was not eating much at all. We were lucky if we could get her to eat broth. By Thursday she was not much better very lethargic and not eating. I took the day off work. I figured I would take her to see the doctor at our local Urgent Care and rule out something that needed to be treated. I honestly figured it had to be a stomach bug and they were going to just send us home, maybe give her some fluids.
The doctor took one look at her, didn't like it, and ran blood work. Her white blood cells were 25,000. I asked what normal range was and he said 5 to 15k but because she was sick it was not that alarming. He also started an IV for fluids and more antibiotics. She was sent home with a follow-up appointment for the next day. On Friday we returned, he gave more antibiotics, did more blood work. Her white blood cells were now 34,000. Doctor again said no reason to be alarmed she was just fighting an infection.
The next thing he did was test for mono, you know good old kissing disease. The test he did at clinic came back negative but he told me 10 % of those after further tests end up being positive. At this point I knew her platelets were low, her white blood cells were high. I also knew that my child had not been awake much in the last two days. I had also noticed at this point she had some tiny red marks on her almost like broken blood vessels. After he exhausted his testing there and she received antibiotics we were sent home with a follow-up appointment made for Sunday.
I never thought I would pray for a diagnosis of Mono before. However, that is exactly what I was doing. I was also using the internet to find all possible information. Asking friends who had mono or had kids with mono. My child was now only waking up if I woke her up and not staying awake at all. I was lucky if I could get her to drink 1/2 of a Pediasure a day. Everyone was telling me this is just mono, the exhaustion is just so overpowering. I kept thinking over the weekend it was just mono because any other diagnosis was unthinkable. Within 5 days my child was disappearing before my eyes. She was not her bright energetic self and I was unsure what was going to happen.
Wednesday, February 22, 2012
Welcome!
Well, I decided to give this whole blog thing a shot. I figured someone is bound to read it so congratulations if you are the lucky one! I hope this blog gives you an insight to my family and I. I will also warn you, I love writing hate grammar, so yeah that part might suck.
The end product I hope is an entertaining yet informative blog about a family dealing with cancer the best way we know how. No one is a super hero. We do and did what we had to do from day one which is get up and face the day and beat this sucker! I hope you enjoy my future posts and share it with your friends and family.
Oh and to let you know I know NOTHING about blogging so this shall be an interesting ride. Buckle up girls and boys, it may be a bumpy ride;)
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