We have not heard the results of the second analysis on the biopsy yet. It will be three weeks on Tuesday since our appointment.
The first couple of weeks went fast. Logan started Kindergarten, and between school and flag football we have been busy and focused on other things besides this crazy histio.
I called the office yesterday and had to leave a message. They said it would be two to three weeks, and I am growing impatient.
She developed a new "lesion" on her chin. This has been the first one on/near her face. And, this morning she woke up with several on her arms and legs. Dr Tamburro said that they shouldn't hurt or itch. But, Lexie scratches them until they bleed. They almost look like pimples or really bad mosquito bites. And, being that it is mosquito season its sometimes hard to differentiate. But, I was at my cousins high school football game last night with Logan, and Adam assured me she was inside last night away from mosquitoes. Which, makes me believe these new "lesions" are from her histio.
And, I'm not sure if its just me, but it seems when she gets more lesions her mood changes. She has been pretty hard to deal with today. She has done nothing but fight with Logan and be destructive since she woke up. She whines and throws herself on the floor for no reason at all. I'm not sure if its just the "terrible twos" but it seems like there is a pattern. And, if I was covered in bumps that seem to itch and hurt, I'd be whiny and mean too.
I wish we would just get the results already! I feel like Children's Hospital is a well known hospital, and I trust their diagnosis. But, I also feel like this is a crazy, scary disorder and a second opinion was a good idea. We just need answers! Either way, whatever the final diagnosis my little girl seems to suffer from this icky disease, disorder, whatever you want to call it. And, enough is enough.
Saturday, August 27, 2011
Wednesday, August 10, 2011
Waiting Part 2
Yesterday we had our 1st visit to UH in Cleveland. I did not realize they are so connected with Rainbow Babies until we got there.
Lexie's Dr, Dr Tamborro, is very nice. She spent a lot of time with us and Lexie. I think she checked over every inch of skin Lexie has. Including, taking the time to examine her scalp thoroughly as well.
Dr Tamborro had three interns working with her as well. They were all in the room as well.
I was hoping to get answers yesterday. But, instead Dr Tamburro requested that we sign a release for them to do their own tests on Lexie's biopsy. And, explained Childrens Hospital should still have her skin blocks.
She explained than the Non-Langerhans Cell Histiocytosis is a very tough diagnosis. And, she has all the Drs we need at Rainbow to take care of her if that is what she has. But, she would like them to confirm the diagnosis in their own lab first.
Part of me wants to hope Childrens was wrong. Maybe they misdiagnosed. Maybe they saw the skin wrong. Maybe the lighting was off. All these thoughts have crossed my mind. And, yes I do hope they were wrong. I wish my daughter did not have this horrible diagnosis.
But, the other part of me, wants to let those thoughts pass as quickly as the come, fearing that I will have to go through the realization process all over again in 2-3 weeks when we have the results again.
Dr Tamburro also explained she hoped the skin blocks would be enough. If not, Lexie may have to undergo another biopsy. Which, in the grand scheme of things is small. But, no one wants their baby to be put under and chopped on. I am praying they have what they need to do their own testing.
So, here we are again, waiting. Hopeful for good news, but knowing this might be even more of a confirmation that she has it.
Lexie's Dr, Dr Tamborro, is very nice. She spent a lot of time with us and Lexie. I think she checked over every inch of skin Lexie has. Including, taking the time to examine her scalp thoroughly as well.
Dr Tamborro had three interns working with her as well. They were all in the room as well.
I was hoping to get answers yesterday. But, instead Dr Tamburro requested that we sign a release for them to do their own tests on Lexie's biopsy. And, explained Childrens Hospital should still have her skin blocks.
She explained than the Non-Langerhans Cell Histiocytosis is a very tough diagnosis. And, she has all the Drs we need at Rainbow to take care of her if that is what she has. But, she would like them to confirm the diagnosis in their own lab first.
Part of me wants to hope Childrens was wrong. Maybe they misdiagnosed. Maybe they saw the skin wrong. Maybe the lighting was off. All these thoughts have crossed my mind. And, yes I do hope they were wrong. I wish my daughter did not have this horrible diagnosis.
But, the other part of me, wants to let those thoughts pass as quickly as the come, fearing that I will have to go through the realization process all over again in 2-3 weeks when we have the results again.
Dr Tamburro also explained she hoped the skin blocks would be enough. If not, Lexie may have to undergo another biopsy. Which, in the grand scheme of things is small. But, no one wants their baby to be put under and chopped on. I am praying they have what they need to do their own testing.
So, here we are again, waiting. Hopeful for good news, but knowing this might be even more of a confirmation that she has it.
Monday, August 8, 2011
REALITY
Reality-
-My two year old daughter that looks as healthy as can be, has a rare disorder called Non-Langerhans Cell Histiocytosis.
-No matter how many countless hours I spend trying to learn as much as I can I am not a Doctor.
-I am not GOD. I do not know what the future holds. And, to tell you the truth, I'm scared to know.
-I have no idea if this is the extent of what we'll experience. I hope the skin lesions are the most she ever will experience, or if we will (God forbid) ever have to experience it anywhere else in her body.
-I pray so hard about this I lose sleep over it.
-I DO NOT WANT HER TO HAVE THIS, BUT SHE DOES.
-My two year old daughter that looks as healthy as can be, has a rare disorder called Non-Langerhans Cell Histiocytosis.
-No matter how many countless hours I spend trying to learn as much as I can I am not a Doctor.
-I am not GOD. I do not know what the future holds. And, to tell you the truth, I'm scared to know.
-I have no idea if this is the extent of what we'll experience. I hope the skin lesions are the most she ever will experience, or if we will (God forbid) ever have to experience it anywhere else in her body.
-I pray so hard about this I lose sleep over it.
-I DO NOT WANT HER TO HAVE THIS, BUT SHE DOES.
Wednesday, August 3, 2011
GOOD NEWS
We received good news yesterday!
The x-rays came back and showed no visible nodules. The best news received all week!!!!
Still taking this crazy disease, disorder, or whatever the heck it is, one day at a time.
Hopefully, what we see on her skin is the extent of it, and all it will ever be. Keep the prayers coming.
It is something she will always have. And, as positive as I am trying to be about the x-ray results, its still something in the back of my mind.
Next Tuesday we will be going to University Hospitals in Cleveland to see the pediatric dermatologist Dr Mostow referred us to. Then from there, who knows. But, hopefully creams will be the toughest thing we have to live with. And, if that's the case, I'll put them on her 100 times a day if I have to!!!!!!
The x-rays came back and showed no visible nodules. The best news received all week!!!!
Still taking this crazy disease, disorder, or whatever the heck it is, one day at a time.
Hopefully, what we see on her skin is the extent of it, and all it will ever be. Keep the prayers coming.
It is something she will always have. And, as positive as I am trying to be about the x-ray results, its still something in the back of my mind.
Next Tuesday we will be going to University Hospitals in Cleveland to see the pediatric dermatologist Dr Mostow referred us to. Then from there, who knows. But, hopefully creams will be the toughest thing we have to live with. And, if that's the case, I'll put them on her 100 times a day if I have to!!!!!!
Tuesday, August 2, 2011
Waiting
Today is one week since we've had a diagnosis and I still have no answers.
I called the family Dr to check on x-rays and the nurse put me on hold for over five minutes. Every thought went through my mind. "Am I on hold because they found something and aren't sure how to tell me? Its been almost a week since the x-rays, they must have them by now. Why are they taking so long?" Finally a nurse gets on the phone and tells me that have not come back yet. She kindly says the Dr is now on vacation, but she's going to call the hospital and have the Nurse Practitioner look at them. I respond with the diagnosis and explain its something difficult to just "look at". I have never heard of that diagnosis (not even being able to repeat Non-Langerhans Cell Histiocytosis). Welcome to the club lady. I spend about five to ten minutes explaining what it is, even though I really still don't understand what it is. And, by the time I am done explaining I am in tears. She sounded as if she was too. She promised to call and check on where the x-rays are and call me back.
I then decided to call the pediatric dermatologist we were waiting to hear from, that Dr Mostow referred us to. The voicemail says they are at University Hospital, not the Cleveland Clinic that we thought. Imagine that on a day our worlds changed, we got confused. Anyhow, I had to leave a message for them to call me.
Now I sit here waiting for answers and to tell you the truth I'm about to lose my mind.
I called the family Dr to check on x-rays and the nurse put me on hold for over five minutes. Every thought went through my mind. "Am I on hold because they found something and aren't sure how to tell me? Its been almost a week since the x-rays, they must have them by now. Why are they taking so long?" Finally a nurse gets on the phone and tells me that have not come back yet. She kindly says the Dr is now on vacation, but she's going to call the hospital and have the Nurse Practitioner look at them. I respond with the diagnosis and explain its something difficult to just "look at". I have never heard of that diagnosis (not even being able to repeat Non-Langerhans Cell Histiocytosis). Welcome to the club lady. I spend about five to ten minutes explaining what it is, even though I really still don't understand what it is. And, by the time I am done explaining I am in tears. She sounded as if she was too. She promised to call and check on where the x-rays are and call me back.
I then decided to call the pediatric dermatologist we were waiting to hear from, that Dr Mostow referred us to. The voicemail says they are at University Hospital, not the Cleveland Clinic that we thought. Imagine that on a day our worlds changed, we got confused. Anyhow, I had to leave a message for them to call me.
Now I sit here waiting for answers and to tell you the truth I'm about to lose my mind.
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