So ViviAnne was released yesterday at 2PM. Her counts FINALLY came up and the potty issues have dramatically decreased. The last 24 hours were very tense. Her ANC was still nothing and her WBC was right at normal so Dr. Ayyanar did a lab test that would check her white blood cells for any Leukemia cells. If there were cancer cells she would then do a Bone Marrow biopsy to check for full relapse. Needless to say we were all VERY scared. But thankfully the lab results came back negative for cancer cells which meant NO RELAPSE!!! And ViviAnne was sooo tired of doing the nightly shots and the doctor determined that she could be completely done with the shots. Another good thing. So we are home! She is settling in okay, it is always an adjustment to be back home and having to share attention with a sibling.
ViviAnne said more than once that she wished I had not taken her to the hospital. She would scream and yell about the shots and say things like, "Mommy, tell them to take my port out I want to go home!" or "Why did you bring me here?!" It was heart wrenching. I explained when we were home that I did not want to take her to the hospital but that she was very sick on the inside and the hospital was the only place that could make her well. She just gets quiet when I tell her things like that. She had a lot of anger this time. And rightfully so.
Her hair is falling out still. She told me last night that she was sad her hair was falling out. I asked her tonight how she felt and she said mad and sad. When I asked why she said "because I won't be pretty any more with a bald head." I assured her that she is beautiful with or without hair. She has a TON of hair to begin with so even with it falling out by the handful she still looks like she just has thin hair. We'll see if it slows down this week. I hate it for her. She is so sad and upset about it.
Thanks for all the prayers and well wishes the past week.
We will go back to the clinic on Thursday to make sure her counts are holding and she is not in need of another transfusion. For now we are happy to sleep in our own beds, to not be stuck with needles and to be with Daddy and Cooper.
Tuesday, April 27, 2010
Sunday, April 25, 2010
What ViviAnne has been up to...
ViviAnne is still at Kosairs in isolation. One of us will update soon with all the latest info in regard to what's going on medically. Just wanted to post a couple things really quick about what she's been up to. Being stuck in a room for over a week, Kristen and Brent have been trying to keep her entertained with art projects, pretend store and beauty salon, and lots of movies, among other things.
ViviAnne wanted to say a big thank you to her teachers and classmates at St. Aloysious for the bag of goodies they sent...
Also, here is a song she and Kristen wrote together...
The Sun has Gone to Bedby ViviAnne Bohannon
The Sun is awake in the
The Sun is awake in the
morning
The Moon is asleep in the morning
At night the Sun has gone to bed
And at night I
The Moon is asleep in the morning
At night the Sun has gone to bed
And at night I
must go to bed.
When it is time for night night I tell my Mom & Dad "I love You" cause I really really do.
I know we are friends when the Moon is out & the Sun has gone to bed.
And I know we'll be friends when the sun is out & the Moon has gone to bed too.
And I will be your friend in the morning.
I will be your friend always.
When it is time for night night I tell my Mom & Dad "I love You" cause I really really do.
I know we are friends when the Moon is out & the Sun has gone to bed.
And I know we'll be friends when the sun is out & the Moon has gone to bed too.
And I will be your friend in the morning.
I will be your friend always.
ViviAnne and Brent are working on a cartoon together. So far its about a guy who looks a like a triangle and incorrectly thinks he has super powers, and his sidekick, an evil Chihuahua with an identity crisis (and incontinence) who thinks he is french.
ViviAnne said "tomorrow we will work on their nemesis". Who Brent believes will be a Super Human Princess that fights crime in fabulous masquerade costumes.
Thanks again for everyone's thoughts and prayers.
Saturday, April 24, 2010
Good Day...
Well, today was a good day. She is still not eating but her fevers seem to be gone and her potty issues are decreasing. She was in good spirits all day and laughed and smiled a lot. They had to de-access her port and then re do it. Simply a 7 day procedure thing. So while she was unhooked I washed her hair and let her dance around the room. And when the nurse accessed her port she did pretty good. ViviAnne told me, "they can't do it here. I'm really scared". A lot of times it takes multiple sticks and nurses in the hospital to access her port. Come to find out they don't hold onto it tight enough. But today I warned the nurse about her wiggly port and said to just hang on to it and all will be fine. And I was right. ViviAnne was glad that she got it in one stick, me too.
Her ANC is only 50 and her HGB is dropping but not too bad or too fast so we will see if it can just hold on and level off. Her platelets are still low, but they are the last cells to fully recover so we will have to watch them. BUT the good news is her bone marrow has a .1 increase in function!! YAY!! We'll take it. Or maybe it was .2 and her White Blood cell count was a .1 increase?. Either way it appears as though the bone marrow is starting to work again. She has the workings of Pre Cells in there and that is good. Her numbers are far from normal but bone marrow is not repaired in a day. Dr.Ayyanar was hopeful and optimistic that if her fevers stay gone and she starts to eat AND her counts come up and stay up then she can be released as early as Sunday!! So, we will see what Saturday and Sunday labs bring.
Now, with all this goodness there are 2 disturbing things to report. One, her hair is falling out in CLUMPS!! It is just like it was when she went completely bald. We'll see if it slows down tomorrow but it was BAD today. Her hair is shorter and much thinner than it was yesterday. Two, if she goes home on Sunday chances are I will have to give her her shots at home. YIKES! I am not afraid of needles but I'm Mommy. I'm supposed to be holding her hand during the shot, not giving it. SO, we'll see what happens there. Maybe her hair will not go completely out this time and maybe I won't have to give shots. We can always hope.
Thanks for all the prayers. I am always blown away but the out pouring of prayers for our family and little girl.
Her ANC is only 50 and her HGB is dropping but not too bad or too fast so we will see if it can just hold on and level off. Her platelets are still low, but they are the last cells to fully recover so we will have to watch them. BUT the good news is her bone marrow has a .1 increase in function!! YAY!! We'll take it. Or maybe it was .2 and her White Blood cell count was a .1 increase?. Either way it appears as though the bone marrow is starting to work again. She has the workings of Pre Cells in there and that is good. Her numbers are far from normal but bone marrow is not repaired in a day. Dr.Ayyanar was hopeful and optimistic that if her fevers stay gone and she starts to eat AND her counts come up and stay up then she can be released as early as Sunday!! So, we will see what Saturday and Sunday labs bring.
Now, with all this goodness there are 2 disturbing things to report. One, her hair is falling out in CLUMPS!! It is just like it was when she went completely bald. We'll see if it slows down tomorrow but it was BAD today. Her hair is shorter and much thinner than it was yesterday. Two, if she goes home on Sunday chances are I will have to give her her shots at home. YIKES! I am not afraid of needles but I'm Mommy. I'm supposed to be holding her hand during the shot, not giving it. SO, we'll see what happens there. Maybe her hair will not go completely out this time and maybe I won't have to give shots. We can always hope.
Thanks for all the prayers. I am always blown away but the out pouring of prayers for our family and little girl.
Wednesday, April 21, 2010
Wednesday Hospital Update
2:30 A.M
Here is what Dr. Ayyanar is thinking. She has a virus that has shut down her bone marrow and that is why her HGB and PLT are not maintaining transfusions and why her ANC dropped down to nearly nothing. So she received more blood and started doing a shot in her leg once a night to stimulate her bone marrow so it will produce and do it quicker than it is. At least this is the best I can explain it. I asked her if they were thinking relapse at all. She said no, not right now. ViviAnne is not presenting with other factors that they typically see in relapse. So good! IF these shots and transfusions don't hold her levels up then they will be looking into checking for a relapse. Kind of a non-committal answer but a plan with answers none the less.
SO, here is what I as the Mommy and the ever present person knows and fears. I know VivIAnne's diagnosis nearly 2 years ago was not typical. She did not have many factors that jumped out as Cancer and she had some things that suggested it was not Cancer. So telling me that she is not showing the typical signs of relapse is not comforting to me. Also, I know that Dr. Ayyanar is being truthful when she says that certain viruses in our Cancer kids can suppress the bone marrow to the point of nearly shutting off. And so going this route first is the best and most logical. And I am really hopeful and positive that this in fact the case. I do not have a heightened sense that relapse is here. Is it a fear, yes of course. It is a fear that every Cancer Mom and Cancer patient has. It is ever present. But do I really have my gut telling me that is the case, no. I am positive and hopeful her bone marrow will start to produce the necessary blood to survive and that she will not relapse.
It is now 3 A.M. She has a fever. CRAP! She had been fever free for over 24 hours. She is turning circles in her bed and talking with a whimper. She just spoke of shots. Love her heart I just wish I could trade places with her. I would. I would do all of this for her.
You may wonder how I do it. Often people outside of the Cancer world wonder that about those of us in it. Well, I can tell you this about me. When I am in the hospital with her my "energy level" or what some people call their "oara" drops down to nothing. I don't get panicked or anxious or mad easily. I do not get overly excited either. And if I do it is short lived and never in her presence. So even though my mind turns and burns I do not physically or verbally manifest these thoughts nor do I turn them into real feelings. Maybe this is also why the nights are hard for me. I have to work harder to not let my body and soul react to the fears and thoughts. They have to remain only in my mind and at arms length and in the dark nights it is harder.
I suppose if I really think about it I don't have the option or the knowledge to do it any other way. The fears are real but I don't want her to see or feel my fears, she is the one physically bearing the brunt of all this. Anxiety is no good cause I have no where to go and fighting against that fact is futile. Mad gets me no where either. So I sit. It is like my whole body goes into slow mode. I have to be Mommy and I have to be patient Mommy so no other emotion can be too strong. I do not think about doing this mental/spiritual/physical slow down. It just happens. I've learned that when a Doctor or Nurse tells you the results won't take long you are really looking at a 6 hour wait. Now, outside of the hospital 6 hours does equate to "not long" for me. But in here, it does.
This is another reason I do not talk on the phone too much. Talking about it to multiple people and answering questions or hearing their concerns makes it more difficult to keep my emotions under control. So, I go radio silent to many of you. The blog has helped. I don't feel like this is talking. I go at my own pace and when I want to. It is selfish and I am sure some people close to me feel slighted and that is not my intent. But I have to stay calm and patient for ViviAnne and this is the only way I know how.
I did feel peace today while watching her sleep at 7PM. She was getting her blood so the color was coming back to her cheeks and she was sleeping so peacefully. I just sat on her bed and watched her. I had no fears and no what ifs running through my mind. Just peace. I find myself watching her more this time. Really looking at her. She is so beautiful and smart. She told Dr. Ayyanar, who was speaking about how ViviAnne was when she was first diagnosed and how angry she was with the doctors and nurses every time they came in her room, that the story was so embarrassing. Exact words, "this is so embarrassing". Now, how many 4 year olds would say that to their doctor? She was so right on and did not lose her cool just said it. She cracks me up. After getting her shot tonight she told her nurse, "tomorrow night give my shot to another patient". I thought her nurse was gonna lose it! She also has the eye rolling of a 14 year old girl down pat!!
I really should try to sleep. I think the Tylenol might be kicking in. She is sleeping peacefully now. Good night all. Thanks for the prayers and warm thoughts. I am grateful for each of them and even though I have gone "radio silent" I want you to know I appreciate you and your prayers. God bless.
Here is what Dr. Ayyanar is thinking. She has a virus that has shut down her bone marrow and that is why her HGB and PLT are not maintaining transfusions and why her ANC dropped down to nearly nothing. So she received more blood and started doing a shot in her leg once a night to stimulate her bone marrow so it will produce and do it quicker than it is. At least this is the best I can explain it. I asked her if they were thinking relapse at all. She said no, not right now. ViviAnne is not presenting with other factors that they typically see in relapse. So good! IF these shots and transfusions don't hold her levels up then they will be looking into checking for a relapse. Kind of a non-committal answer but a plan with answers none the less.
SO, here is what I as the Mommy and the ever present person knows and fears. I know VivIAnne's diagnosis nearly 2 years ago was not typical. She did not have many factors that jumped out as Cancer and she had some things that suggested it was not Cancer. So telling me that she is not showing the typical signs of relapse is not comforting to me. Also, I know that Dr. Ayyanar is being truthful when she says that certain viruses in our Cancer kids can suppress the bone marrow to the point of nearly shutting off. And so going this route first is the best and most logical. And I am really hopeful and positive that this in fact the case. I do not have a heightened sense that relapse is here. Is it a fear, yes of course. It is a fear that every Cancer Mom and Cancer patient has. It is ever present. But do I really have my gut telling me that is the case, no. I am positive and hopeful her bone marrow will start to produce the necessary blood to survive and that she will not relapse.
It is now 3 A.M. She has a fever. CRAP! She had been fever free for over 24 hours. She is turning circles in her bed and talking with a whimper. She just spoke of shots. Love her heart I just wish I could trade places with her. I would. I would do all of this for her.
You may wonder how I do it. Often people outside of the Cancer world wonder that about those of us in it. Well, I can tell you this about me. When I am in the hospital with her my "energy level" or what some people call their "oara" drops down to nothing. I don't get panicked or anxious or mad easily. I do not get overly excited either. And if I do it is short lived and never in her presence. So even though my mind turns and burns I do not physically or verbally manifest these thoughts nor do I turn them into real feelings. Maybe this is also why the nights are hard for me. I have to work harder to not let my body and soul react to the fears and thoughts. They have to remain only in my mind and at arms length and in the dark nights it is harder.
I suppose if I really think about it I don't have the option or the knowledge to do it any other way. The fears are real but I don't want her to see or feel my fears, she is the one physically bearing the brunt of all this. Anxiety is no good cause I have no where to go and fighting against that fact is futile. Mad gets me no where either. So I sit. It is like my whole body goes into slow mode. I have to be Mommy and I have to be patient Mommy so no other emotion can be too strong. I do not think about doing this mental/spiritual/physical slow down. It just happens. I've learned that when a Doctor or Nurse tells you the results won't take long you are really looking at a 6 hour wait. Now, outside of the hospital 6 hours does equate to "not long" for me. But in here, it does.
This is another reason I do not talk on the phone too much. Talking about it to multiple people and answering questions or hearing their concerns makes it more difficult to keep my emotions under control. So, I go radio silent to many of you. The blog has helped. I don't feel like this is talking. I go at my own pace and when I want to. It is selfish and I am sure some people close to me feel slighted and that is not my intent. But I have to stay calm and patient for ViviAnne and this is the only way I know how.
I did feel peace today while watching her sleep at 7PM. She was getting her blood so the color was coming back to her cheeks and she was sleeping so peacefully. I just sat on her bed and watched her. I had no fears and no what ifs running through my mind. Just peace. I find myself watching her more this time. Really looking at her. She is so beautiful and smart. She told Dr. Ayyanar, who was speaking about how ViviAnne was when she was first diagnosed and how angry she was with the doctors and nurses every time they came in her room, that the story was so embarrassing. Exact words, "this is so embarrassing". Now, how many 4 year olds would say that to their doctor? She was so right on and did not lose her cool just said it. She cracks me up. After getting her shot tonight she told her nurse, "tomorrow night give my shot to another patient". I thought her nurse was gonna lose it! She also has the eye rolling of a 14 year old girl down pat!!
I really should try to sleep. I think the Tylenol might be kicking in. She is sleeping peacefully now. Good night all. Thanks for the prayers and warm thoughts. I am grateful for each of them and even though I have gone "radio silent" I want you to know I appreciate you and your prayers. God bless.
Tuesday, April 20, 2010
Hospital update
Hospital update
This morning her Hemoglobin (HGB) has dropped AGAIN, 7.2 now, so they are going to transfuse her today. Her Platelets (PLT) have dropped too, 58 now, but they are border line transfusion. Yesterday they had stopped one of her oral lung meds. that can lower counts to see if that would stop her counts from dropping. It did not. And the medicine they gave her in place of the oral meds had to be inhaled and after the breathing treatment she passed out. It was scary for me and I am glad my Mom was here and I was not alone. ViviAnne came back around quickly and 3 nurses ran into the room to help her. Thankfully that treatment is only a once a month thing so she won't be doing it again this stay, if ever.
Flagyl is the med she is on for C. Differential and it tastes gross. And this morning she lost all the color in her face and started to shake real bad and then threw up, threw up all the meds too. So they may change to a different med because this is the second vomit. She HATES to vomit. Really, who likes that yuckiness?
I have not seen Dr. Ayyanar yet today so I will ask her what her take is on all of this. Is it all from the C. Differential? We know ViviAnne tested negative on her Coombs test and on her Hepatitis test so I just am curious on the Docs. take. I like Dr. Raj, he was the Doctor on all weekend and yesterday, and I do think he is a great Doctor I just have a bit better of a relationship with Dr. Ayyanar. We'll see.
Thanks for all the prayers.
This morning her Hemoglobin (HGB) has dropped AGAIN, 7.2 now, so they are going to transfuse her today. Her Platelets (PLT) have dropped too, 58 now, but they are border line transfusion. Yesterday they had stopped one of her oral lung meds. that can lower counts to see if that would stop her counts from dropping. It did not. And the medicine they gave her in place of the oral meds had to be inhaled and after the breathing treatment she passed out. It was scary for me and I am glad my Mom was here and I was not alone. ViviAnne came back around quickly and 3 nurses ran into the room to help her. Thankfully that treatment is only a once a month thing so she won't be doing it again this stay, if ever.
Flagyl is the med she is on for C. Differential and it tastes gross. And this morning she lost all the color in her face and started to shake real bad and then threw up, threw up all the meds too. So they may change to a different med because this is the second vomit. She HATES to vomit. Really, who likes that yuckiness?
I have not seen Dr. Ayyanar yet today so I will ask her what her take is on all of this. Is it all from the C. Differential? We know ViviAnne tested negative on her Coombs test and on her Hepatitis test so I just am curious on the Docs. take. I like Dr. Raj, he was the Doctor on all weekend and yesterday, and I do think he is a great Doctor I just have a bit better of a relationship with Dr. Ayyanar. We'll see.
Thanks for all the prayers.
Monday, April 19, 2010
Fears still lie in the quiet dark
ViviAnne is back in the hospital. Friday morning around 4 she woke up with a stomach ache and a fever. I took her to the clinic first thing that morning to find her ANC at 100, her HGB at 7.8 and her Platelets at 78 all wrapped up with a temp of 102. So we were sent directly to the hospital. It is now 5 A.M on Monday morning, we are still here.
Over the weekend she has had a blood transfusion and a platelet transfusion. She has battled high fevers, low temps. and shaking. She has tested positive for C. Differential, an infection in the intestines/colon. It is painful and causes big potty issues. She is experiencing it all. On Saturday she sat next to me and moned for about an hour or so. Friday I spent most of the time in bed with her cause she felt so crapppy. Sunday she perked up but did have some icky times. Sunday her ANC was 10!
So, here I am again. Lying on an uncomfortable love seat thing with sheets that turn into a wrinkled balled up mess and I am facing my fears. I lie here with the all too familiar sounds of the hum of the air being filtered, the I.V pump squeezing fluids and the clock. The blasted clock in this room is loud! I can hear the seconds ticking away. My mind races as I go over all the blood work and tests they've done through the course of the weekend. Negative for Hepatitis, negative for Coomes, Pancreas working properly, Liver NOT going into liver failure yet. Liver enzymes high, Billy Rubin high, ANC low, HGB up but still anemic, Platelets up but still low......what does this all mean? I pull myself back from thinking the worst and just remind myself that she is sick and that is what this all means. SHE HAS LEUKEMIA DUMMY!
But still, here in the dark running on an average of 4 hours asleep a night, it is hard not to get lost in your fears. During the day I am distracted with tending to ViviAnne. Here in the quiet, but noisy, dark my mind turns and burns with questions and what ifs. And I think of Cooper. I miss my little man and feel like I am failing him. He is struggling with bad allergies and I just want to hold him. Love on him and listen to him talk. He is so funny.
The night in the hospital is lonely. You are reminded how isolated you are and how the world still goes on even though your world has been forced inside these four walls. It is a must in order for her to survive and I would not be anywhere else. But doing this again and again, and I think we are one of the lucky ones, can really do a number on your head. Facing demons and fears in the dark of a hospital room that no Mother and Child should have to face; and yet here we are.
Over the weekend she has had a blood transfusion and a platelet transfusion. She has battled high fevers, low temps. and shaking. She has tested positive for C. Differential, an infection in the intestines/colon. It is painful and causes big potty issues. She is experiencing it all. On Saturday she sat next to me and moned for about an hour or so. Friday I spent most of the time in bed with her cause she felt so crapppy. Sunday she perked up but did have some icky times. Sunday her ANC was 10!
So, here I am again. Lying on an uncomfortable love seat thing with sheets that turn into a wrinkled balled up mess and I am facing my fears. I lie here with the all too familiar sounds of the hum of the air being filtered, the I.V pump squeezing fluids and the clock. The blasted clock in this room is loud! I can hear the seconds ticking away. My mind races as I go over all the blood work and tests they've done through the course of the weekend. Negative for Hepatitis, negative for Coomes, Pancreas working properly, Liver NOT going into liver failure yet. Liver enzymes high, Billy Rubin high, ANC low, HGB up but still anemic, Platelets up but still low......what does this all mean? I pull myself back from thinking the worst and just remind myself that she is sick and that is what this all means. SHE HAS LEUKEMIA DUMMY!
But still, here in the dark running on an average of 4 hours asleep a night, it is hard not to get lost in your fears. During the day I am distracted with tending to ViviAnne. Here in the quiet, but noisy, dark my mind turns and burns with questions and what ifs. And I think of Cooper. I miss my little man and feel like I am failing him. He is struggling with bad allergies and I just want to hold him. Love on him and listen to him talk. He is so funny.
The night in the hospital is lonely. You are reminded how isolated you are and how the world still goes on even though your world has been forced inside these four walls. It is a must in order for her to survive and I would not be anywhere else. But doing this again and again, and I think we are one of the lucky ones, can really do a number on your head. Facing demons and fears in the dark of a hospital room that no Mother and Child should have to face; and yet here we are.
Friday, April 2, 2010
Update
Just wanted to give a quick update. I'm sure Kristen will have a lot more info to share in the next couple of days, but until then...
ViviAnne was released earlier this evening from 7 West. From what I understand, all of her blood work (post-transfusion) and chest x-ray looked satisfactory to the doctors. I'll leave all the details to Kristen, but just wanted to let everyone know that she is home and doing well.
Thanks for everyone's thoughts and prayers.
Aunt Stacey
Back to 7 West
Kristen asked me to put up a quick post to let everyone know whats going on. I'm just getting bits and pieces from Brent, Kristen, and my Mom, but I think whats going on is...
ViviAnne was admitted to 7 West (Kosairs). She was looking really pale, had been coughing a lot, vomiting, and running high fevers. She had been fighting all this for a month now with antibiotics at home.
Her fever has broken but her lower left lung sounds diminished. They are concerned she is heading down the same road she was on last fall with the exception that they caught it much sooner this time.
Aunt Stacey
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