KATIA'S STORY IN A RATHER LARGE NUTSHELL
Diagnosis(2002) through present
- 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 badly 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 may be 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 fora 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 embolization procedure to cut off the blood supply to the tumor.
After the procedure, Katia came down very sick and was diagnosed with meningitis. She was hospitalized in isolation. Three days later, we were toldshe 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!
However, from the beginning of her symptoms, I started keeping notes and just everything from results of labs or scans and ALL the information coming at us in just a short amount of time! As parents, so many decisions have to be made and it helped to at least feel organized and have notes and papers to refer to.
UPDATE 2003
After her initial 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 a lot of pain due to side effects and damage being done to her body. She also received direct radiation to her brain and the original 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. Katia's match turned out to be an umbilical cord, not a perfect match but a 5/6 match. 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 registered 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!
2005-2008 Since Katia's transplant, her body has continuously shown signs of rejecting the transplant. This is called Graft vs. Host Disease(GVHD). Primarily this GVHD has affected her skin, eyes, mouth and other outside areas of her body. To keep the GVHD from overtaking other areas of her body like her organs, she stays on medications causing her body to stay very immune suppressed. She remains homebound, not attending school but having a homebound teacher come to the house. She goes to clinic to have labs done and receive different treatments one of which is an antibody infusion (IVIG) which is possible due to blood donors. This gives Katia's system a boost in her antibodies to allow her body to fight off infections. She wears a mask any time she is out in public so she isn't exposed to anything that may get her sick.
Katia's biggest discomfort has been her eyes which have been very much affected by GVHD. The corneas stay very irritated and her eyes are very sensitive to light as well. Anyone who does see her usually sees her with big sunglasses :) Hopefully someday, her body will accept her bone marrow transplant and her eyes will become comfortable again and she will be able to fully open them, they won't be red and irritated but they will be bright and shining.
She is free of leukemia. She does stay pretty happy, doesn'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 me. Sometimes she is very very moody but that is due to steroids and not feeling well.
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 with 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.
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 anew 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 PERSISTANT 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 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 cardiac 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.
UPDATE SUMMER 2016
Long overdue update for sure but in so many ways, health wise, Katia remains pretty much stable. Here and there medicines get adjusted. We try to wean down on some, adjust others due to her body’s reaction but the fact is,she still has chronic GVH which means her body has never accepted the transplant she received back in February 2004.
Katia is now 16 years old!! Hard to imagine I know!
As I read back over this Caringbridge page and guestbook entries, I am not only amazed at how much she has come through but also all of you who have been right there along the way.
This journey with Katia started when she was just 2 years old and has gone on now for 14 years and so many have stood by and watched her go through good and bad times, fun and sad times and even those times of just waiting which we know are moments which seem to drag out forever.
Katia and I were talking the other day about what parts she remembers from early on in the hospital and the people who helped take care of her. We were laughing about some of the funny events that probably weren’t so funny at the time but now looking back are something we can laugh about.
The fact is, Katia is now 16 and we are so blessed to be able to continue this journey with her by our sides. The miracle of her life is never forgotten. The struggles along the way and even her continued daily battles reminds each of us how precious life is and the value of living each day to its fullest.
You may ask, what is Katia up to now?
The best way to find out is from Katia herself, right? Which brings me to my next subject.
It has been nearly 3 years since the last update on here and Katia is getting older and older. What is she like? What does she like to do? It would be really cool to hear from her!
I imagine that is what you are thinking,right?
So, Katia is going to be taking more control of “the reins” from this point.
Katia is going to start her own CaringbridgePage at
http://www.caringbridge.org/visit/ladybugkatia.com (here)
Here, she will be able to share some updates,thoughts, random things, etc.
Also, some of you may already know how much Katia loves to draw and design, create and sew and bring “creatures” to life to share their stories.
Between the two of us, we are bringing some of these stories “to life”in the form of short stories so we’ll post some shorts on her new Caringbridge as a preview to our project. They’re a lot of fun!
So, check out Katia’s very own Caringbridge to follow her along.
Tracy (Mom)
PS I get to be there too. I help with edits, grammar and all the boring stuff…
