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Katia a.k.a "Kitty" April 2011





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"Ladybug and the Dragon" eBook
written by: Rick Magers 2004

New reprint (2011) AND signed by Katia available for purchase currently $10


"KATIA'S STORY" IN A (KIND OF LARGE) "NUTSHELL"

Our daughter
Katia, was born in January 2000. We thought she would be a millennium baby but she was born on the 26th! We were so happy and she was just a joy for our family. We have 2 older daughters, Sharayah and Tatiana so we were all excited to have a little baby in the house.

When Katia was 3 months old, she stopped breathing for a couple minutes. We called 911 and when the paramedics arrived a few minutes later, Katia was fine. There was no sign of any problems at her next doctor visit. That scare brought all of us closer to her and we basically spoiled her (but that was okay by all of us - she was our baby).

All was fine until right before Katia's 2nd birthday. We were getting ready for church and Katia was walking into our bedroom and fell and hit her head on our bed frame. It was a VERY hard hit but it didn't seem to really swell too bad as we put ice on it. We went to church and over the next few days we were pleased that her head healed up so quickly! Her birthday was 11 days after the hit and she appeared normal.

About a week after her birthday (18 days after the fall) we noticed some swelling around her right eye. Since the fall had not caused problems we didn't associate it with the fall. We took her to the doctor and she was treated for allergies.

A few days later the eye was twice as bad. We took her back and also showed the doctor some bruising on Katia's legs. The doctor said the bruising went with her age but decided the eye needed antibiotic ointment. Again, a couple of days passed and the eye was not only swelling worse but seemed to be protruding outward so we took her back. This visit she also had more bruising and some unexplainable sores on her back. The pediatrician wanted us to see an optometrist and had no explanations for the bruising or sores. She said maybe it was bugs. I was concerned, very concerned by now. I knew Katia wasn't around bugs and her activity level didn't explain the bruising.

I called the optometrist and after being told the next appointment was a few weeks away, I took Katia to the ER. I asked them to do a CT Scan of her head because I felt something was wrong. Five hours later the ER doctor came out and said the scans were clear. I called back the optometrist and explained all this in detail to her and she agreed to see her the next day. Katia went to her office and was immediately sent to get an MRI STAT. This doctor showed urgency finally!!! She sent someone to bring the scans back to her office.

That afternoon she called saying Katia had a large mass behind her
right eye and she was sending us to another specialist. We had 4 or 5 appointments a week for a few weeks. Everyone was trying to come to an agreement of what this mass was and how to treat it. Finally it was decided to do plastic surgery and remove the tumor but before that could be done, she needed an embolism to cut off the blood circulation to lessen bleeding during surgery.

After the embolism, Katia came down very sick and was diagnosed with meningitis. She was hospitalized in isolation. Three days later, we were told she had leukemia and sent to
All Children's Hospital, St. Pete via ambulance.

We were told a day later, that she had the worse of the leukemias... Acute Myelogenous leukemia. Katia went through 5 months of extensive chemo, had about 7 or 8 serious infections, a LOT of pain over this time and finally finished chemo in September of 2002.

In October and November of 2002, she was hospitalized for 2 more serious infections. The last one she had caused her to stop breathing and have a temperature of 107.8�! I think back on that now and can't believe she is running around and currently remains in remission. It is a miracle! She was home for Thanksgiving and Christmas and celebrated the New Years at home. We pray she has a great year and can live a long, happy, and healthy life!

This is when we started this Caringbridge Page.
Katia's Full Medical History, through her first treatments, can be found on a seperate site. I kept it, hoping it would be of help to someone else but also so I could keep up with ALL the information coming at us in just a short amount of time!


KATIA'S STORY CONTINUES BELOW



UPDATE 2003

After her inital treatments, Katia stayed in remission until August 2003. Near the beginning of August 2003, Katia was tested and totally found to be in remission. But, in late August 2003 due to some concerns I was having she was retested and found to have aggressively relapsed with up to 93 percent of her being leukemia. She had leukemia in her blood, marrow, central nervous system and brain. Katia was immediately admitted, started back on high dose radiation hoping she would reach remission. She started this going through alot of pain due to side effects and damage being done to her body. She also received direct radiation to her brain and the orginal tumor site in her right eye. At the same time, her family was tested to see if any of us were a marrow match. None of us were close. Seeing Katia has such a mix of culture in our families, we knew finding a marrow match would be nearly impossible but after sharing her story on the news, radio and papers, we found a lot of support and eager people willing to be tested. Hundreds were being tested in different drives, not only in Tampa but also in other parts of the nation. When a person registers anywhere, it goes on the NATIONAL MARROW DONOR REGISTRY and even if you aren't a match for the particular person who lead you to be tested you could be a match for anyone and your name stays on the registry until the age of 61 or you ask to be removed due to health changes that would make you non-qualified to be a marrow donor. A lot of drives were held for blood, platelet and many different types of blood products that people learned could be donated on a regular basis and without these blood product donations, patients cannot fight cancer as chemo and radiation wipes out ALL BLOOD CELLS leaving the patient in desperate need for blood products weekly, daily and even multiple times daily.

After 9 months of searching and many many many people being registered, a match was found. The match was an umbilical cord blood that had been donated during the time of the search. Umbilical cord blood is typically thrown away but this cord blood gave Katia a chance at living!! Please donate your baby's cord blood!! Katia is living proof as to why to donate and register as a marrow donor.

Katia has received many many pints of donated blood and blood products thanks to those precious people donating on a regular basis. If your health doesn't permit you to do this or register as a marrow donor, you can pass on the word to your family and coworkers and remind them regularly of the need. Out of the billions of people in the world, 6.5 million are registerd marrow donors. As a marrow donor you are agreeing that you will be willing to donate to anyone in need that you are a match for. If a person backs down because they wanted to donate just to a child or a woman or man or any particular person, a family is devastated knowing there WAS someone but that person changed their mind. If the person is found to have a health disorder at the time of the need, the family is notified the potential match was willing but unable to donate. A family understands this.

Transplant was scheduled for January 2004 but suddenly it was discovered Katia had a possibly fatal fungus growing in her lungs. If she went into transplant with this fungus (aspergillus), she would have no chance of getting through transplant as it would be fatal. So, she had surgery to have a partial lung removal. She recovered in ICU and prayers were answered.

Katia had her transplant on February 5th, 2004. This is a 2nd birthday for her and a day that we treasure each year!! Katia had her 4th birthday just days before receiving her transplant.

After 336 days away from home, Katia returned home under strict health requirements, very immunosuppressed, unable to walk and had a long road of recovery ahead of her to gain her strength back BUT each glance at Katia was a glance at a living miracle in our house!

KATIA'S STORY CONTINUES BELOW



During 2005 and 2006,

Katia's body rejected her marrow and caused a lot of Graft vs. Host Disease. She underwent many many treatments. She also had a lot of problems with her eyes, her bones, her back and developed osteoporosis throughout her body due to the continued usage and need for steroids. But, she learned to walk again and got stronger each day. She started Home Bound Kindergarten with an amazing teacher. Katia is a happy little girl!! She is LITTLE. She hasn't grown since transplant due to steroids and treatments. She has been on many different trials with hopes that something would help the GVHD to go away and her body to finally accept the new marrow. Her GVHD is mainly in her eyes, mouth, knees, skin, hips quite badly. On the skin it is like sceloderma which is a hardening and thickening in the top few layers of your skin. This is worse on hips than anywhere else.


KATIA'S STORY CONTINUES BELOW



UPDATE APRIL 2007

Katia's main ongoing issue at this time is GVHD which is Graft vs. Host Disease. This is where her body tries to reject the donated marrow and this has been going on with Katia (at different levels) since transplant in February 2004. So, to best describe how GVHD affects Katia, here is a pretty detailed description at this point.

So, here is where she stands right now and what our long term "idea" is.

First her GVHD is painful in certain areas and not so much in others. There are some pictures of Katia's GVHD that have been taken over the fast few years to show its progress or worsening. Due to the GVHD, she has very thickened, hardened skin in her hips which becomes painful as it isn't able to stretch so it hurts as it is unflexible with hip movement. She has lotion she uses to keep it from scaling and peeling but the hardening is permanent and effects 3 to 4 layers of her skin in that area on both hips.

Her knees have the same thing but the skin is just thickened and hard but not as stretched so they look painful and irritated at times but she doesn't complain they hurt.

Her mouth gets a lot of mouth sores and has one permanent enlarged area in her cheek. Her mouth improves and gets worse with no real explination and she has learned to eat without biting the enlarged area but somedays are worse than others with pain.

Her eyes are the most ongoing and painful issues that more effect her quality of life, school, sleep, going outside, riding in the car or even having houselights on. That is what causes her the most ongoing pain and what causes us the most grief as we know it effects her comfort and happiness and is effecting her schooling.

For all of this she remains on immune suppressing medications for an unknown amount of time. Maybe one day her body will just stop rejecting her marrow. Maybe she will be on her medicines for a long long time. Maybe a new treatment will come along or a trial drug that will work. The steroids seem to be the one thing that keeps the GVHD from taking over her. She has been on them since transplant in February 2004 and they are stunting her growth completely, hard on her bones having caused severe osteoporosis in her hips and spine and just aren't really holding the GVHD back the way they used to BUT we can't seem to wean them down all the way or she flares up with such severe GVHD, it could be fatal so for now, we just keep her on the same drugs as long as need be or until her body accepts the marrow or a new treatment comes along.

She is free of leukemia. She does stay pretty happy, does't complain much and accepts her life as a way of life. She smiles and laughs a LOT. She is very loving and a joy to be around. She is always full of hugs and kisses for her family. Sometimes she is very very moody but that is due to steroids and not feeling well.

UPDATE APRIL 2008

Things pretty much have remained much of the same over the past year. Katia continues with chronic GVHD. Her mouth has cleared up from the GVH however which has been great so her eating has been able to improve. She remains Homebound due to the fact she is still very immunosuppressed. She still does her schooling twice a week with Ms. Michelle (who she adores!). Katia is learning to read! She is around a 1st grade level. She likes to work with her reading although she does still have a lot of eye pain and sensitivity due to cornea damage from Graft vs. Host Disease but prefers that the Math portion of school stay short and sweet... The eye situation is something that has really been put to the side for now for the reasons that anything that is done is to relieve Katia's eye pain or damage done GVH is quickly undone due to the fact the GVH is still very much ongoing. Her eyes are extremely sensitive to the sun and even indoor lighting at times. Over the past few months we have seen some degree of improvement in the areas of her hips however. Our prayer is that Katia's body will someday just accept the marrow from the transplant that took place in February 2004 and the rejection issue will slowly resolve on its own. Everything we have done medically has worked to keep the GVHD at bay from flare ups but nothing is able to stop it and it has continued to go from one area to the next. However, there is always a bit of positivity with Katia... that is just the way it is. Katia is a very caring person and pretty well has her mind set right now that someday she is going to be an "animal doctor" so she can help animals that feel bad. She is growing up before our eyes. She hasn't grown in height at all, still right around 3'3" tall but she is growing as a person. She has been through so much yet she is just an amazing little girl who likes to have fun, play games and be happy. She doesn't complain about her clinic visits or what she has to go through. She just does that because she is used to those things. She is just Katia:) Ladybug Katia.

UPDATE JULY 2010

In February 2010 Katia began growth hormones. The idea was that we were going to wait until she was able to wean totally from the steroids she has been taking since 2004 due to her chronic GVHD but that has not been able to happen. Katia hasn't grown since her transplant in 2004 and she is now 10 years old and still is 3'3" tall so it was decided to go ahead and start her on the growth hormones to see if we could get some benefits from them both for growth and bone strength as Katia has shown significant osteoporosis through the years.

The first check for growth did not show anything in June 2010 but we will check again in 3-6 months to see if there has been any significant growth. Give it some more time. Also we see if there is any changes on bone strength with her upcoming DEXA scans.

Just recently as a few days back it was realized at an eye appointment set up due to concerns for eye pain and the fact Katia's eye just looked "off" that Katia's left eye has suffered severe vision lost so in this coming week, we are going to do an eye exam under sedation to hopefully find the cause and possibly a solution. As noted above, Katia's eyes have suffered a great amount since 2002. Her right eye has vision lost but which is a concern but the left eye, she basically is only being able to see shapes and figures out of now. Due to having so many previous eye procedures and not wanting another one, Katia hadn't said anything about losing this vision.

Since before Katia's leukemia diagnosis, she has had eye issues which turned into a diagnosis of a tumor being found in the orbit of her right eye. She has had a long battle so we know what it is to face finding out what is causing this. We pray this cause will be found and be something that can be dealt with and possibly give her relief from some long standing eye pain and light sensitivity as well. We pray she gets her vision restored.

UPDATE November 2011
Let me start with the eyes. Not a lot of changes with the eyes which most of the damage appears to have been done from graft vs. host disease. The left’s eye damage on the cornea has become so bad, the eye appears cloudy when looking at it.

Let me start with the eyes. Not a lot of changes with the eyes which most of the damage appears to have been done from graft vs. host disease. The left’s eye damage on the cornea has become so bad, the eye appears cloudy when looking at it.

GVH affects multiple areas of Katia’s body but primarily shows on the skin, her eyes, her mouth and her GI tract her GVH has just recently flared back up again causing us to have to increase the steroids as well as begin a new treatment. We are in the process of weaning back down on the steroids as we had been trying to wean her off until this flare happened. She has constantly been on steroids since 2004. Graft vs. host is rejection from transplant and has really been an issue with Katia since right after transplant.

Also Katia had been on growth hormones for an extended amount of time which had little effect on her growth and we had hoped would strengthen her bones. She still remains 3’ 4”. She is fine with that though which is a good thing.


In a DEXA scan report in 12/2010, it showed her osteoporosis had not improved but again, worsened. We also had an EKG and ECHO done due to concerns caused by symptoms Katia was having which showed LVH – Left Ventricle Hypertrophy, which is a thickening of the wall in the left ventricle of the heart. It isn’t really bad and it has come about since the last ECHO done in May. This was possibly caused by the growth hormone which we stopped since it was having no positive effects.

We are planning another ECHO at this time due to symptoms she is experiencing.

Most recently, Katia has been having ongoing pain issues more than usual. It sounds bad to have to say “more than usual” for someone that hasn’t yet turned 12. She has also been having shortness of breath and dizzy spells which may be caused from high blood pressure which is being treated, new treatments, or even medicines she is on but lately these things have just been worse than usual. She has been in treatment since the age of 2 so this has become life as she knows it. However, as she gets older, she would like to be able to do more and she realizes that everyone her age isn’t facing the same things.

The positive part of Katia getting older aside from the fact she is a SURVIVOR is that she can describe what she feels, when it is worse and when something makes it better. She has become quite the advocate for herself. Due to some developmental delays, she isn’t the “typical” 11 year old but she is quite an amazing one!!

Katia is an extremely talented, creative, loving and PERSISTENT little girl but as I tell people and I have told her, she is my HERO and I don’t use that word lightly. She faces her battles head on and she gives each day all she has and more. After all, that is giving it your all:)

UPDATE 2012 - SUMMER 2013


Katia has continued to stay in remission, which is great!!!

However, her issues with GVHD (graft vs. host disease) have really affected her overall health, comfort as well as her immune system.

While continuing continuing to be so grateful for Katia's life having been spared from a disease that so often takes away those we hold so dear, it is always difficult watching her deal with many of the side effects from disease, treatment and this ongoing GVHD.

Since she has been on continuous steroids since 2004 to hold back the GVH as much as possible, this has been very difficult on her body in different ways. It has continuously stunted her growth leaving her at just over 3' 3".

Treatments keep her puffy in her appearance which is becoming more difficult as she gets older (she is now 13, can you believe it??).

Katia is typically very low on energy, stamina and the ongoing treatments have had different effects on different body organs and functions.

Most recently has been caridac and breathing issues which she needed to be hospitalized for and put on oxygen to help her breathe. There were changes made to her blood pressure medicines to help regulate that better and the hope is her heart can regain much if not all of its strength and function.

Her skin, eyes and GI track continue to be affected but overall, Katia remains more positive, deals with the day to day and enjoys learning new things.

This year we will venture back into homeschooling. Katia has had the same Home Bound teacher since 2005. We will really miss Ms. Michele.

Katia is quite delayed in learning due to treatments, especially the radiation to the brain prior to transplant in 2004.

We are finding new ways to work around what she is unable to do and focus on the many things she can do.

As always, your continued prayers and encouragement are greatly appreciated.

More current updates can be found via the Caringbridge Site (link below) or follow me on FB.

Her site will continue to be updated.





TO READ THE REST OF KATIA'S STORY YOU CAN START BACK AT THE
JOURNAL HISTORY PAGE.



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Katia Kitty and Hello Kitty June 2010






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