GOOD NEWS!!!!

I received a call from Dr Tamburro herself today. (Lexies doctor from Rainbow)
She called to say Lexie has "Papular Urticura". Which is basically a hypersensitivity to bug bites, eczema, or medications.
It can easily be treated with antihistamines and she will eventually outgrow her sensitivity.

We are ecstatic to hear this!!!!

Now, she will start a new medication tomorrow, and we will see her regular dermatologist next week.

Hopefully this will be the end of this crazy adventure!!! And, hopefully relief for Miss Lexie's poor little lesion covered body!

Sometimes Prayers Get Answered Before Questions Do......

Today I received a call from Dr Tamburros assistant.
She was calling to say that Dr Tamburro met with the pathologist yesterday, and after looking at the first biopsy, they do not think its Histio!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

They are still analyzing the second biopsy, and hope to call us Tuesday with a new diagnosis.

Words cannot say how relieved I am!

There is still the question of what is this crazy thing she does have, but we are hoping for the best outcome for our Lexie. Hopefully the diagnosis will be something easily treated, or better yet curable.

Keep us in your prayers as we continue our journey. And, one thing is for sure, this experience has put so many things into perspective.

CIRCLES

On the way to Rainbow Babies this morning my mind was going in circles. Would we get the results back? Would they be the same that Childrens diagnosed? Maybe something not as bad, maybe something worse. Either way I was ready to heat whatever it may be.

But, we have no answers. Dr Tamburro explained that the pathologist wanted to do more slides on Lexie's skin block, but that he needed more skin to work with. And, being that she has a fresh break out right now, it was the prime time for another biopsy. 

I did not want to put her through another one, but histiocytosis is such a rare, crazy, disorder and Rainbow Babies wants to be completely sure that's what we are dealing with. And, so do we.

It would be one thing if these lesions were cosmetic, but its not an issue of that at all. Its an issue of a two year old girl that scratches her skin raw and waits patiently as I inspect her skin on a twice daily basis looking for new lesions to apply cream to. Sometimes she wakes up and I find blood on her blanket from where she has scratched herself bloody.

We are putting our trust in Rainbow Babies. Some may judge that we should not have put her through a second biopsy, but truth is we'd rather be completely sure of what she has so that we can give her the most appropriate treatment. And, if it is in fact histio, it can affect her organs. And, that's not something we can afford to be in the dark about.

So, right now we are going in circles. But, I'd rather be going in circles than in the wrong direction.

Gotta go snuggle by baby,who in case you are wondering, seems to feel fine after her biopsy. She complained a little about the pain, but Childrens Tylenol works wonders! And, mommy's hugs work even better!

9/12/11

I'm overdue for a post.
We still have yet to hear the results from Rainbow Babies Evaluation. They did contact me to say that it could be an extra couple of weeks, because they want to run extra tests on the sample. And, they scheduled a follow up appointment, its actually tomorrow.

I am hoping when we go they will have answers for us.

The past few weeks Alexis has had  many new breakouts. She now has a new batch of lesions on her back, as well as three on her face. These are two places she never really had had them before.

She also had been ill this past weekend. Anytime she gets sick (diarrhea and vomiting) I get nervous. I'm sure its just a bug, or something she ate. But, I cant help but think that it may be an affect of the histio. Now that I know this crazy disease exists, it consumes my mind way more than I should allow it to. But, this is my daughter, my beautiful precious daughter. And, anything that can put her happiness and health in jeopardy is my concern. That's a mommy's job.

So, here I sit typing. I'm a crazy, worried mama. I want tomorrow to come so that hopefully we get answers and direction. But, I dread it all in the same.

STILL WAITING

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.

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.

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.

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!!!!!!

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.

Unanswered Questions

Ever since Lexie was about 6 months old, she has had very sensitive skin. Often she would develop a rash for no apparent reason, or even raised bumps on her skin. She would sometimes complain they hurt, or itch them until they bled. Just about every time she went to the doctor for any reason they would look at her skin too.

The bumps were misdiagnosed several times. First they thought just dry skin or eczema, and then once they diagnosed it as molescum. The treatment usually recommended was Aquphor, Eucerin, etc.
Then, a couple of months ago she broke into hives one day. The believed cause was an allergic reaction to sunscreen. We quickly switched to hypoallergenic sunscreen, detergent, baby wash, anything we could think of.

The rashes seemed to cease once we changed to hypoallergenic. However, the raised bumps did not seem to improve at all.

In June we were referred to a dermatologist, Dr Elliot Mostow, one of the best in the state. At our first appointment he was attentive and very responsive to Lexie and me. He did not have a diagnosis at the time. He requested that I take Lexie for a biopsy. He then referred us to the Director of Plastic Surgery at Akron Childrens Hospital.

We went for the appointment and the surgeon asked me alot of questions that made me question myself. "Are you sure you want to do this? She will always have scars. We have to put her under. And, we do not promise a diagnosis". Really? I asked myself if its something we really want to do just for some skin bumps. And, then I quickly realized, she is two years old. I have to make all decisions for her. These bumps have driven her crazy for a year and a half and we have no clue what the cause. I had to have it done, no question about it.

We went for the biopsy on July 15th. Lexie did very well. It was hard to see her in a hospital gown with an IV in her arm. But, we knew this was one step closer to finding out answers.

Days went by with no call from the surgeon. "No news is good news", I thought to myself. I did call the office a couple of times to find they had not received results yet. Then, finally a nurse called to ask if I could come in the nest morning instead of the appointment I had scheduled two days later. Her reason was the surgeon was getting ready to go on vacation and they had to push his surgeries into the day I was scheduled. While on the phone I asked if they had the results yet. She put me on hold for a few minutes and came back to say they had not received the results yet.

Lexie and I went into the office thinking the surgeon would simply look at how her wound was healing and send us on our way. But, much to my surprise he had the results of her biopsy in hand. Finally, answers! He hesitated and fumbled on his words. "Her diagnosis is something called Non-Langerhans Cell Histiocytosis". What the who? He continued, "I am only a surgeon, not a dermatologist. I don't have a lot of information for you. I suggest you do not GOOGLE this, but schedule an appointment with Dr Mostow and let him discuss it with you."

I was scared as can be. What is this thing I'm not supposed to GOOGLE? The first thing I did when I left there was go and call Adam. I had to spell it for him. And, I told him not to look it up. But, of course minutes later I received a frantic call from him that he looked it up, and whatever I did, do not look it up/

I calmly called Dr. Mostow to make our appointment for follow up. The nurse explained they were moving their office and could not see Alexis until September. I quickly went into Mom mode, full tears and all. What do you mean? I was just told not to GOOGLE whatever this thing is my daughter has and now I have to wait two months? Are you kidding me? The nurse then said they would see us first thing the next morning, and to bring the results with me because Dr Mostow had not even received them yet.

The next morning we went to see Dr Mostow. This time Adam went too. Dr Mostow came in calmly and sat down with us. From the minute he explained what she had I only had more questions.
"Its a disorder a lot like cancer. But, its not cancer. But, if it gets really bad its treated like cancer. It can be as simple as creams, or as serious as chemotherapy. Right now it appears its only on her skin, but it can also go into her organs as well. Things to watch for may be difficulty breathing, pains, etc."

Almost all of her life, she has had trouble breathing. She used to need Albuterol Solution via a nebulzer everytime she so much as thought about having a cold. And, she is on Singulair every night. So, I quickly made sure Dr Mostow was aware. His recommendations were to make an appointment with the family doctor as soon as possible to go over her diagnosis, and he strongly recommended chest xrays. He also referred us to a pediatric dermatologist at the Cleveland Clinic, and made it clear that she may eventually be referred to an oncologist. Only, because it is so much like cancer, the oncologists may have a better understanding of the treatment.

Within hours my family doctor had us in her office. She had never seen this diagnosis in any of her patients. She brought her laptop into the room to research it in my presence. She printed out the x-ray orders and before I knew it my daughter was in another hospital gown getting her x-rays.

Right now its been five days since she was diagnosed. I have spent numerous hours researching her new diagnosis. And, had five sleepless nights.

I am afraid of this new disorder that up until five days ago I didn't even know existed. And, though Ive been reading about it for days, I still don't know much. What I do know is that, it is something that she will always have. There is no cure. It can be as simple as sores on the skin, or as serious as it taking over her organs. It is not contagious. It is not hereditary. We may be dealing with creams forever, or chemotherapy if it gets bad enough. Its extremely rare. It is hard to explain to friends and family. And, it is difficult when they ask questions that I don't know the answers to.

Right now I am in a complete fog. The results of the xray cannot come soon enough.

This week, I have wanted to scream, cry, and hug my kids as tight as I can. Its all about finding answers now.

If anyone is interested in reading about her disorder, here are two websites that seem to be reliable. They seem much like the Cancer Society.

https://histio.org/sslpage.aspx?pid=291
http://www.histiocure.org/