Katia Solomon: Acrostic poem dedicated to Katia Solomon by Gerald C. Rinks.
Knights in white cotton armor Attend the needs of the princess. Together, they supplicate their knowledge, Integrate mighty silver weapons, mighty powders and the Awesome powers of God.
Sweetness plays the face. Ordinary becomes extraordinary to Leave all plainness in her life to wither. Over the curly hair the spirits of Many angels attend her tiny soul. Oh Master and Lord of all, create New love and hope in your servant, Katia.
This is and Acrostic Poem. The first letter of each line spells out Katia's name.
Diagnosed leukemia AML M4 April 15, 2002 Remission May 2002 Finished first protocol of treatments September 11, 2002 Relapsed in Spinal Fluid, Bone Marrow, and Blood August 26, 2003 Admit back to hospital August 27, 2003 Cord Blood Transplant February 5, 2004 HOME (after 336 days away)JULY 27, 2004
- 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 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 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 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 separate 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!
UPDATE ON 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. 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 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 anytime 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. 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 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 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 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.
This site will continue to be updated.
Katia's interest: This hadn't been updated for a bit so I decided it was about time as Ms. Katia is a rapidly changing little individual. Of course she still likes her ladybugs but in different ways. They are becoming more of a keepsake and something that is special to her because of the meaning behind them and her treatments and she has some very special ones that have been sent to her through the years from all over the world. We have them as Christmas ornaments and she has ladybug jewelry and some wonderful art that has been sent as well. A lot of creativity has been put into projects and countless artwork from school age children too!
Katia is still into her games like her Nintendo DS and her Wii. Her DS goes everywhere she goes and her Wii gets her active. Katia loves cats, Skelanimals, drawing and art supplies (she is definitely the artist in the family!) She is currently in 3rd grade but is about a 1st grade and 2nd grade level and she does have a lot of eye issues to deal with. Katia is still Homebound, has the same awesome teacher, Ms. Michele (we love her!) and same wonderful doctor, (Dr. Petrovic) We love her! We love our long-time follows, Hugs and Hope Family!
You can learn more about Hugs and Hope at hugsandhope.org to learn more:)
One the day you were born... God held the stars Within His hands And watched as they twinkled and shined. He tried to find two of the best He observed, But He couldn't quite make up His mind. Then suddenly two of them danced in the air, And the rest of them took to the skies. On the day you were born, You were blessed with the stars that were chosen To shine in your eyes.
Written by Desiree Derosier-Kaczor--
"When a door closes, another door opens.
Mommy and Daughter March 2007 Thankyou, Pepito:)
Mommy Makes it Better
The times you have a boo boo On your arm or leg or toe, Mommy makes it better, And off to play you go.
If someone takes your toy Or gives you a mean look. Mommy makes it better, Reading a story from a book.
When you go off to the doctor And something has to hurt, Mommy makes it better, by calling you her "SQUIRT".
As you roll off of the sofa And fall onto the floor Mommy makes it better, By kissing what is sore.
If Mommy has to go bye bye, And she tells you that you can't, Mommy makes it better, By putting "Kissies" on your hand.
Now Mommy has a question, If there's cancer in your blood, Can Mommy make it better With her kisses and her love?
Written for Katia by Tracy Solomon (Mommy) * April 6, 2003
This is written, with those in mind, that have lost loved ones, today, yesterday or over the years.
ALONE ANOTHER STANDS
As each day we go through life, like a forever winding road, we never know what lies ahead or what tomorrow holds.
One thing we know for certain is the love we share inside. Through sickness and in health Our love is their to shine.
Some people just shine brighter Some people plant more seeds Some people are the givers While others have more needs.
Of course none of this is easy As our minds cannot explain Why some of those with so much love Must go through so much pain.
Why must some say goodbye to those they hold so dear? Sometimes over and over in just one passing year?
It's something unexplainable That I can not pretend to even know the answer for a broken heart to mend.
But know my prayers are always there, Like a beacon in the night That through the clouds, someday Again, will shine some light.
My prayer is for tomorrow to be brighter than today. For those to find the faith to get from day to day.
I pray that through the sufferings God will hold each hand. For as one must leave this earth, Alone another stands.
By: Tracy Solomon *September 20, 2004
If Only for a Moment
If only for a moment, I want to hold you tight, I want to see your pretty face, Treasure your very sight!
If only for a moment, I wish to see you play, Smile, laugh and run, On a beautiful Spring day.
If only for a moment, I will watch you as you sleep, Eat a sugar cookie, Or just play hide and seek.
If only for a moment, I want to hear you sing, See you learn to ride a bike, Or soar high in a swing.
If only for a moment, Let's do all we can do, Cause here now and forever, My sweet baby, I LOVE YOU!
Written for Katia by Tracy Solomon (Mommy) * April 6, 2003
In My Daughter's Eyes
by: Martina McBride
In my daughter's eyes I am a hero I am strong and wise and I know no fear But the truth is plain to see She was sent to rescue me I see who I wanna be In my daughter's eyes
In my daughter's eyes everyone is equal Darkness turns to light and the world is at peace This miracle God gave to me gives me strength when I am weak I find reason to believe In my daughter's eyes
And when she wraps her hand around my finger Oh it puts a smile in my heart Everything becomes a little clearer I realize what life is all about It's hangin' on when your heart has had enough It's giving more when you feel like giving up I've seen the light It's in my daughter's eyes
In my daughter's eyes I can see the future A reflection of who I am and what will be Though she'll grow and someday leave Maybe raise a family When I'm gone I hope you see how happy she made me For I'll be there In my daughter's eyes
Katia and Daddy April 2003
ENJOY THE LITTLE THINGS IN LIFE!
CLICK HERE if you are looking for information on leukemia, lymphoma, blood cancer and/or many other cancerous and non-cancerous diseases and helpful links.
If a link doesn't work, please Contact Me so I can update it.
Normal Blood Counts *These numbers can vary
White Blood Cell 4.50 to 10.0 cells/mcL Red Blood Cell Male: 4.7 to 6.1cells/mcL Female: 4.2 to 5.4cells/mcL Hematocrit (varies with altitude) Male: 40.7 to 50.3% Female: 36.1 to 44.3% Hemoglobin (varies with altitude) Male: 13.8 to 17.2gm/dL Female: 12.1 to 15.1gm/dL MCV: 80 to 95 femtoliter MCH: 27 to 31 pg/cell MCHC: 32 to 36 gm/dL ANC: 2000-7800 Neutrophils 57-67% BUN 7-18mg/dL Creatinine 0.6-1.2mg/dL
This song is dedicated to the many who have gone before us and to their families who face this loss each and every day.
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October 13, 2014
I thought this update would be long overdue but when I read my last update from a few months back in May, I have to say to go back and read that post because so much of that rings totally true for now as well and this update is only going to build upon the update from May's post.
Let me answer some concerns on my "absence" from posting, updating, replying and missing out on some pretty important events in the lives of others. Like I said earlier, skipping down and reading some previous posts will give you some background information on this but as I have mentioned earlier, there has been and continues to be ongoing cognitive function loss which has had quite an effect on my memory, day to day routines, concentration and just a number of things we typically take for granted being able to do without any thought.
I am not going to go into a lot of detail but I have had to make a lot of changes over the last few years because this didn't just happen overnight and an answer hasn't been yet which we can see isn't going to be simple.
I have always been organized but that word has a whole new definition with me. I have notes and back up notes for everything and then those are backed up. The thought of handing me something you don't want lost is like handing me chocolate and expecting it back... Yeh, right.
There are many ways I have learned to work around or with my issues but it is very tiring and time consuming. I basically start each day reading over previous days and then moving forward. As time goes on, this window of time gets smaller or my ability to concentrate without getting totally frustrated gets much shorter. Some days, very short.
Of course, I am reminded everyday how much worse things could be. I have seen it first hand. I am grateful I was already used to being organized also.
There are times my organizations totally fail. My books have names. My book I have with me all the time is small so it is called my "Little Brain Book". Whatever is written in there is then moved to the bigger book which I don't usually take anywhere and it is called my "Big Brain Book". (I didn't say they were creative names).
Anyway, there are those times I totally lose my marbles and I mean I lose my book or books and I am looking everywhere (it is not unusual for me to be looking for some lost item...).
Somebody will have pity and ask what I have lost and my reply is, "I can't find my Brain Book!" Next question, "Which one?" Me, "The little one."
These are those conversations you don't plan in life. I have volumes of Brain Books and they each have indexes and color codes. I am lost without them.
Okay, got a little sidetracked. Katia says I talk like I am Google (that means I ramble off facts) or I get so easily sidetracked like a dog with squirrels ( no explination necessary).
So, Facebook? There have been a lot of changes on my Facebook. The biggest I guess is I don't hardly go on there. More and more it was becoming a source of stress. My "Wall" was becoming more unrecoginizable to me so over the last year or maybe a bit longer, I have been letting go of those I didn't recognize their name or picture.
I know this may sound mean or strange but I guess it is just one of those things maybe some people won't understand unless they experience it.
I have had people come up to me that I didn't recognize their face but then when they said their name, I realized who they were. I am never shy to admit I don't know who someone is. There are times it isn't taken well but I would rather be up front than to be insincere in what I say.
It can also be quite scary at times to lose track of people, a place or realize you forget what you are doing more often. As a very independent person, a writer, an avid reader, researcher and one who once remembered anything I read or wrote, this is all a lot for me and I have not settled on accepting this as a new way of life or allowing it to just continue down this path.
I still read, research, write and do everything but it isn't the same. I can see where I lack in simple writing and have completely taken a break from any writing with research or a book I had been working on.
Okay, how is Ms. Katia??
Well most everything in the update from May is continuing. There have been other changes though.
It is well known Katia has been in treatment since 2002. That is a long time. Her life has revolved around treatments, recovery, side effects, feeling bad and more treatments.
Nobody could go through everything Katia has been through and not have all of the physical side effects including ongoing pain, weakness, fatigue, headaches and then the medical side effects of her stunted growth (3' 3"), severe osteoporosis, chronic graft vs. host disease which affects multiple parts of her body in different ways at any given time.
There is also vision problems, learning delays, social delays, cognitive function delay and loss and the list goes on.
Most recently, all of these things and more have had a very large impact on Katia emotionally and mentally. Over the years, she has had times of emotional struggles and with help has always come through.
Katia is 14 and with different delays her ability to really process information, understand stress or struggles and communicate her feelings and/or concerns is much closer to a 2nd or 3rd grade level.
She has excellent doctors, specialists and everyone has always been very understanding of Katia's needs and know Katia extremely well.
When I listen to Katia explain things to me, anything, I have always been able to understand her. I understand her writing and I just feel blessed to have her in my life.
I can also see through her drawing, writings, conversations and when she gets frustrated because her words may not match what the picture is about or the meaning.
I have talked to her about this and we are working with a therapist. Katia really likes her a lot.
Katia and I are working on ways of communication. Simple things many people take for granted but for those who get them mixed up, it makes a lot of difference. I have let her know my words are all mixed up because often times the words I think aren't the ones I later read on the paper. So we will work together.
Communication is such an important part of everyday life. We have to describe how we feel, if we are sick, answer questions, talk to friends or family, etc.
And lastly, there have been changes in Katia's Meds due to the fact her body has just been on so many meds for so long and it is simply wearing down. We are hoping her GVHD a will not flare up with these recent changes. Her heart rate had dropped too low and her blood pressure has had issues. Katia has had ongoing issues with remaining puffy due to steroid use constantly since early 2004. Her face, neck and head getting puffy becomes very concerning though.
Sorry if this sounds choppy. I am having to pull from notes and Katia had a rough night last so.... hopefully spellcheck isn't doing anything crazy.
Anyone I have cut from Facebook can still view things. It is public. With Facebooks many many changes, many of us don't see updates friends may post as Facebook now selects what they think we would like to see. Personally, I can't blame Facebook for my missing posts because I am not always on there but please don't hesitate to message me on FB and I will do my best to respond in a timely manner.
I am so very grateful to those who have messaged me when regarding things they know I would urgently want to be aware of.
Hopefully between the last few updates and this one, things are a bit more clear?
Thank you for continuing to follow Katia and please keep all of those who are still fighting horrible illnesses as well as many who are newly diagnosed in your prayers.
Always praying for cures for cancers and so many other diseases that tragically change lives and take loved ones away from so many.
Love, Tracy and Katia
May 2, 2014 Posted on Facebook - a few add ins here.
I don't really get on Facebook much these days and scroll through so I don't see a lot of what is posted.
Please feel free to message me on here though, I see those and try to reply ASAP.
I tend to post more from outside of FB or just jump on and off.
I really need to update Katia's CB site but it gets to the point so much is going on the update is like writing a book and I know it is a lot for those of you who have followed and care for her so much to take in.
Most recently, Katia's GVHD (rejection) has seemed to be worsening and finally ended up appearing all over her skin. She has been much more puffy and sore from the inside out. Her appetite has dwindled down and she feels wiped out from the time she wakes up.
She was admitted to have an upper/lower endoscopy and colonoscopy with biopsies taken throughout. Skin biopsies were also taken. An ECHO showed no real changes on heart (you can read back in history to find the last cardio findings) which is good because we don't want that to worsen - her BPs have more regulated. Of course it would always be nice to here her heart is all good. Katia has been on medicines for so long to keep her GVHD from flaring up (steroids being one) that side effects of course are expected. T may be that her body is not responding to them anymore and allowing the GVH to advance.
We just go forward one day at a time like we always have and always have faith.
As we have always known, there are so many facing struggles, similar, bigger or things we can't see but we know people are struggling through.
Our prayers are always with those in need of strength, physical and emotional needs, help in making very difficult decisions or in whatever way that is needed.
I do see posts in need of prayers and even though I may hit "like" which I still think FB can come up with a better button, know my heart and prayers are with you.
I love seeing kids who have gone through treatments and are now grown and living their lives.
I also am grateful for those who have their little angels and loved ones in Heaven but still take the time and effort to follow Katia and others. That amazes me really.
I love reading great news!!!!! Yes, Kimberley Ann Pool your recent news took the cake on good news! I love the "K Family" and need to meet up someday!! Especially now that it is growing more:)
So, even though I am more quiet here than usual and not writing much right now, I am around.
I am on Twitter but not as much as usual and I keep up my breaking news (and more) site as well.
We are hopeful things will return to a more "as they were" way with me having the ability to remember, research and write as well as other cognitive issues which greatly declined hopefully improving. For now, I have grown quite used to keeping numerous different books for note taking and being very detailed as I write notes. More and more, my days start reading over a good amount of previous notes to get back on track for the day ahead. OCD comes in quite handy now! It has always been handy tracking Katia's meds and labs along the way. I don't see OCD as a disability, it is an advantage:)
Dealing with ongoing kidney stones (they just keeping coming back no matter what we or the doctors try - I have accepted I am a stone maker), cysts and other fun little things that don't belong in me doesn't allow my body to go the same speed or amount of time as my brain would like to push it. They continuously argue... I just focus on all Katia has gone through and it makes what I go through seem, small.
So, we are always praying for Katia's health to allow her more days of feeling better and able to do more. GVHD has really been a mess for her lately and she has had a lot of pain issues on going. Her ability to really go places and walk around much or even be out is just not that good. She wears out very quickly.
She hasn't been able to do much in the way of her art, drawing or sewing and has been a stranger to the kitchen. No donuts lately. But, she still makes little surprise lunches or snacks with the sweetest messages:)
We hoping to get a little break with her for a few days so she can just relax and have some fun without having to worry about anything. Katia (and me) for that matter go along in spirits so we take breaks and then try to get energy burst to go again. It is rare she can really just be a kid. Although she is 14, she is still more around a 7 or 8 year old in most of the things she likes to do,
It is always (can't think of a word here) to be somewhere with Katia, who remember ALWAYS wears cat ears and stands just 3' 3", when people come up and bend down saying how cute she is or talk to her like she is 3 or 4. We are pretty used to that or people talking to me, about her like she can't speak. She just stays quiet usually or smiles. I have to remind her, "You are the one who is 3 feet tall wearing cat ears...".
I have always urged her to write and illustrate her story behind the cat ears because it is much more than people would imagine and definitely part of who Katia is. I adore her:)
So, that is a reasonable update on some of what has been going on. I think I will just copy and paste this to the CB site and maybe fill in some blanks over there shortly. **I have done that here.
Thank you for always keeping up. When I posted the pic of Katia in the ladybug dress, it really drove home how long Katia's CB site has been going and the length of time some of you have followed. Plus, it aged me...
Lots of love, Tracy and Katia of course:)
February 5, 2014
Wow! An update... I know, it takes a while sometimes.
Today is a big day! Ten years ago, Katia received her transplant! We never take light of the fact everyday is a miracle we have Katia here with us.
A mother, we have never known, donated her baby's umbilical cord blood to give someone else a second chance at life. That someone was our daughter, Katia.
I remember when Katia relapsed in August 2003, my heart sank and it felt like the world rushed by like water going down the drain of a tub. I knew our only chance was getting Katia quickly into remission and also finding her a marrow match before she relapsed again. Both of those things were huge milestones as her body was full of leukemia cells and we were found to not be matches.
It would be many drives, lots of pleas, volunteers, donors and complications later, a donor was found around Christmas 2003, not a perfect match but Katia was at a point, we had to move forward.
She was close to turning 4 at the time, had gone through so many treatments, had spent months in the hospital straight and we found out there was a serious complication yet again. A fungus appeared in her lungs. We couldn't go into transplant with that because her counts would be so bottomed out for a length of time, it would kill her.
After weighing the options, she was treated and a part of her lungs were removed to get the fungus out. She would need to remain on anti-fungal meds for a long time post transplant to protect her and lower the risk of its return.
On February 5, 2004, we moved forward and Katia received her transplant, a 5/6 cord blood match.
Then we started the big counting of days and waiting for the graft to take place (her body to except the new marrow).
Shortly after transplant, Katia started showing signs of GVHD (rejection of the transplant). She was put on steroids and immune suppressing medication to help her body not fight the transplant and give it a better chance to accept the transplant.
It has been 10 years of that ongoing battle with Katia continuing to deal with GVHD and going up and down on meds to help her body along the way.
I think the baby who the cord blood came from must be a very strong child because the cord blood certainly has put up quite the fight. Katia is quite strong-willed as well:)
Over the last 10 years, Katia has been such a blessing to our family and those who have been involved in her life. She has touched so many lives of those who have not only followed her journey but have become part of her journey through prayers, encouragement and love.
Katia is quite the artist and enjoys her sewing, designs and drawing. She challenges herself and never ceases to amaze me.
Her size, pains or health issues have not stopped her from doing what she loves but instead have added to her creativity. She will find a way to do something instead of backing down from it. She is my hero.
People say Katia is lucky to have me to take care of her all the time. I have been so blessed to have Katia to help me grow, find courage when I felt weak, find hope when things seemed dark, turn to faith when faced with discouragement and find humor when laughter was the best medicine.
Thank you to everyone who has shared in our journey through the ups and downs, the laughter and tears and held onto the hope this day would get here.
Lots of love, Tracy and Katia
UPDATE: November 23, 2013
Can you believe it is already the end of November?? Crazy!!
Where has this year gone?? This means Katia will soon be 14 years old (in January). She is always my baby though:)
So, I wanted to get on here and do a bit of an update since it has been a while. I always think, "I should go do an update..." but not a lot changes with her and I am still dealing with a lot of the same memory issues so... well, that equals out to no updates.
Katia just had an IVIG infusion due to her numbers going quite low. Anytime we do that, I am always reminded of how thankful we are for those who regularly donate blood/blood products. IVIG would not be possible without those. This is derived from the antibodies of tens of thousands of donors, so thank you so very much.
Katia is now nearly 10 years out of transplant! Yep! Although her GVHD (graft vs. host disease) has continued throughout all of this time, the fact is she remains in remission and is here with us. The good far outweighs the bad. We are grateful for her all throughout each and everyday.
Katia is a blessing in so many ways.
Those that follow me on Facebook know Katia is very much into sewing and drawing and this is far more than a hobby to her. It is a therapy as well and something that allows her to express herself. It is also something she would like to do in her future. The girl has serious goals and ambitions and it is exciting to see her grow in these talents. She has a real gift in creating some fun and unique pieces of art and some very good drawings as well.
I am so lucky, as her mother, to have been blessed to spend so much time with her throughout these years and watch her blossom and become the "Katia" she is. She is definitely unique, caring, talented, smart and so much more.
I have learned so much through the years and one of the most important things is so often, children (and adults) with disabilities do not want to be seen for those disabilities but for the people they have become through the struggles and obstacles they have gone through. Katia is the definition of perseverance.
She has had quite a bit of ups and downs lately with her health and feeling bad, sore, dizzy and just overall feeling quite puny but it hasn't stopped her from doing the things she loves and doing her best at her school work. She does have days she just wants to "lay low" but that typically doesn't keep her in bed. She hates staying in bed and usually finds her way to doing something at the computer or a table and just quietly working on a task.
My health has stayed pretty much the same as well. I had surgery to remove four more stones from my left kidney that were unable to pass for months, some longer. The doctor said more would form almost immediately. He was right. I did start on a supplement to hopefully slow down the process, so we will see how that works.
The writing is still on hold and it takes quite a bit for me to do these updates so even with proofing, if things seem out of order or there are typos and such, please excuse them.
My main thing I would like to hopefully figure out is the issues with my cognitive functions, word losses, short term memory, research, writing, etc. I have had numerous other issues that concern us with pain, sensations, numbness, shortness of breath, my ongoing, never ending cough and constant nausea but the cognitive issues have stopped what helps me deal with getting through most everything else. I love to write.
We did find out I am allergic to basically everything indoors and outdoors so it has helped to be treating that although it hasn't dealt with the shortness of breath and cough. It has helped in other ways. If I wasn't a complete clean freak before...yeh, more so now. Now, if we can just get rid of the grass in Florida.
Onto other news, Katia has a new best friend by the name of.... BATMAN!!! Yeh! There are some pics on my Facebook. She doesn't know this yet but she will be seeing him again very very soon so I will post more pictures:)
She adores him!
He makes her very happy which makes us very happy:)
Thank you for checking in on Ms. Katia. Hopefully the next update will be sooner than later.
Lots of love, Tracy
UPDATE: July 8, 2013 12:35 AM
Thought I would post a short update on where things stand and how things are going since we have been home from the hospital.
If you follow me on FB, you have seen recent pics of Katia. We always appreciate being home.
We are always hopeful and praying for the day Katia can feel better. In her words, more "spunky" and "stronger".
She is worn out and that upsets her.
She had plans to try to have a fun summer which her ideas of a fun summer are far different than many others' plans.
It would just be nice to see her be able to be a kid.
As I see that or when I think about it, I am quickly reminded what a miracle it is to have her with us, 13 years old.
Challenges and hard times have given Katia a strong character and sense of compassion.
I am blessed each day I spend with her, my mini-me.
At the moment she is just very worn down, having continued issues she was hospitalized for and it is building up anticipation for her upcoming cardiology follow up and repeat ECHO.
She gets very nervous with a lot of this. She has blackouts of sorts, dizzy feelings and gets quite weak and has just become overly tired.
Thank you for your continued prayers and kind messages.
I don't post a lot because, emotionally, it is draining. Physically, this has taken quite a toll on me and overall we are facing many other challenges at once.
I tend to get quiet, do research, take notes and just feel best when I am more prepared what we are faced wit or may be faced with.
Thank you for being understanding.
I try to post pics to show she is still smiling, up (when she isn't sleeping) and just being Katia:)
Lots of love, Tracy
June 26, 2013
Happy to have Katia home! Wanted to put together some type of an update to let you know what is going on.
It is kind of difficult to let do that these days because as time progresses with Katia and she continues to be on many of these meds to fight rejection from her marrow transplant, the effects from these meds are very hard on her body and its organs.
Bone Marrow Transplant has not been around all that long and as it improves and the side effects of cancer treatments improve, the necessity for long term meds or even many treatments and medication during cancer treatment has changed.
The goal often time during fighting cancer is to simply rid the body of cancer and to survive. That is optimal and to get through cancer treatment is amazing and many are not able get through.
However, getting through the fight for cancer as well as having a quality life is a fight for many years after treatment.
This is why it is so important to continue research both for cures and the treatments we are using to treat cancer and the effects for cancer.
As I mention this, I want to also include many diseases here because this is the case when fighting many horrible, life altering diseases. Short term and long term goals in treatment.
Okay, so back to where we are.
Every case is different.
We have always understood the effects of treatment. We have always understood when Katia didn't find a perfect match and she rejected her transplant, the effects of that as well. We never knew how long that would go on. Nobody can predict that. We are thankful for every day we have with Katia. She also understands that circumstances behind her transplant, her treatments and why she has the battles she does.
As Katia has gotten older, she knows what it means to not find a match, to not make it through treatment and therefore she is always more thankful than to complain about not feeling well. She feels bad for people going through even minor difficulties or facing tragedies such a natural disasters, loss of loved ones, pets, hunger, so many difficulties. Katia's own fight has made her very compassionate.
That compassion also has made her very in tune when things seem "not right" with her own health. She understands the fragility of things.
Over the past few months especially, Katia has felt "puny" and "not well". It has been noticable and she has just seemed diminished.
We have made some changes to her meds. We can't bother Katia's steroids because her body just won't allow it. Her GVHD (rejection) flares up at any change.
Her energy has gone down continuously. She was feeling short of breath more and more.
She has continued to be more nauseated, more puffy and generally, not well.
She began having more chest pains and her blood pressures and heart rate were increasing to climb up.
She has always been followed by a cardiologist as well as numerous other specialist along the way and although things don't always appear perfect, they were pretty good for someone who has been through and continue to go through what Katia has.
As school was coming to a close for Katia, she was hoping to have a good summer. For Katia, that doesn't mean camping, going a bunch of places or one activity after the other but it does mean hoping to feel good and being able to do fun things.
However, after school ended, her health totally slumped.
On the 17th, her face suddenly became puffed up and added to her pressures that was quite a reason for concerns.
She went in and with her labs, scans and appearance, she was admitted.
There was fluid on her lungs, her breathing was diminished. Her lungs sounds were diminished.
One concern was why was there fluid on her lungs.
We needed to deal with the high blood pressures as well. Change in med was ordered and with an increase in that med, the pressure started to come down.
With that change, the fluid was nearly gone.
It wasn't 100�hat was why but it would appear so.
We repeated scans a few times, different ways and although there are still other issues there, the fluid was almost all gone.
Just getting that fluid off Katia's lungs made her start feeling different, better.
Lowering he oxygen was some first steps to take but it was slow.
Part of the problem is Katia's heart function has weakened. Due to this, her heart is having to work harder to get the job done.
This does explain nearly every symptom.
We have a plan and we will continuously checking on progress. We are keeping a closer eye on pressures and heart rate at home and Katia's energy level (which is still very low but better than in was at time of admit) as well as puffiness.
One of our biggest concerns has to be Katia's state of mind as well.
As a very compassionate person, Katia also absorbs a lot and can get very worried. She has been around medical information and all of this since the age of 2 and she is 13 now. She knows her own health better than anyone. We have never been ones to hide anything from her and we aren't doing that now either.
This is in no way a dooms day for Katia but it is a time of concern for her. We hope to see improvements in her overall energy, nausea, appetite as well as improvements in her functions.
She still wants to have a good summer and just feel better.
It was awesome getting her home to Ling Ling, Fozzy and Monty. They were just as happy to see us as we were to see them!!!
They are circling us this morning and will probably not let us leave the house again....
It was nice getting up to the coffee pot today and Katia is happy to have the kitchen back and plans to make donuts today:)
She missed her sewing box so I am sure that is in her plans today as well.
We are forever grateful for your prayers, concerns and love.
Sometimes it is just really hard to update because I don't know what to say when we are just waiting or things aren't going as planned.
We have learned along the way to just wait and see how things go and if it doesn't work, try something else. I know people get anxious for updates but anxiety is often one of our worse enemies. Anxiety can lead to fear and I was really just trying to be at the hospital, in the moment and carry on some of our normal day to day activities when possible and other than that, focus on giving our input and going over notes to see what ideas we had.
Katia learned how to spelled B-O-R-E-D in the hospital... so there was a bit of education as well:)
They didn't have much in the way of crafts to make monsters, creatures, play games that "Katia" likes and such. We know she is a little different but now the Child Life people know as well. They are AWESOME people!!!
If given the opportunity, I will take things up for teens to do though. It gave us some ideas being there.
Lots of love, Tracy
Isn't this an awesome pic?? Love to see her smile!
April 12, 2013
Been a while...
Quite a bit going on so here is a bit of an update.
Katia has kind of been up and down with how she has been feeling. We realized the new type of steroid she was on really wasn't doing what it needed to do which was throwing in her off in many ways. She was constantly nauseated, in a lot of pain and her skin wasn't doing well. There was more going on but the point is, she needed to get back on track. Her cortisol level was really low as well so she was put back on prednisone which obviously her body seems to be addicted to. She is able to eat again and it has helped in a number of ways.
Pain is just an ongoing issue with Katia but she has better days than others. Like me, she tends to do things that over stress her body. She is one that likes to rearrange her things in her room or dig around for something if she can't find it. All of this ends up in a sore back. She also "popped" something in her back which was quite painful. Katia definitely doesn't let things stand her way.
Her sewing hobby is great and she makes some incredible creations! Staying in one place for hours isn't too "body friendly" and she realizes that but usually when she is done.... She is incredibly creative though. I am going to post some pictures of more things she has recently made. They will be on my FB page. I am not sure if I will make an album or just post them as Instagram pics yet. Depends on how many she pulls out (which she is doing as I type).
She just got another dose of IVIG as her counts dropped and will have another infusion in before the end of April as well.
The cardiologist just checked her out and her heart appears to be unchanged which is a good thing seeing all she has been through. She came home on a holter monitor to observe a bit more which we will get results from later. She also did another DEXA Scan which is a regular thing in her case due to her Osteoporosis so we should get those numbers back in a bit as well.
As I mentioned prior and some of you may know, I have quite a few issues going on myself with both female problems and memory issues.
First, the memory problems. So, I said I had upcoming tests to see what was going on with my memory and cognitive abilities. Well, that went (I am trying to look for another word besides "horrible"). It didn't go well. I knew it was going bad while the testing was going on. All I could do was continue through and do what I could and do my best. When I left that day, I was really upset.
However, I didn't expect the results to be what they were. Let's just say, it is being followed up. There is obviously more of an issue than we even thought. It is and has been having an effect on our daily lives, we know that. Myron has had to become the around-the-clock primary caretaker here which has leaves a lot to be figured out until we find some sort of answers to what may be the cause and if this can be corrected or not allowed to progress anymore.
It is having an effect on my being able to write, research and just do things that I typically do. These are more than things I just do but also a way of expressing myself, stress relief and allowing me to clear things that otherwise stay on my mind. I have always written.
It is easy to sometimes think these memory and decline in cognitive abilities may be age related or just do to stress or things going on. The tests showed us otherwise. In my mind, I knew it wasn't good and I have known it was worsening. I had brought it up at one time to a previous doctor who wrote it off like many people do themselves or even doctors do. I wish testing had been done back then. Not sure what is next.
I am however trying to finish a writing project I have been working on for some time as it is very near and dear to my hear. It has to do with Katia's journey and my own journey. Putting aside the time to focus on writing on this project is far different than when I work on articles or other projects that I do. It is an emotional journey back down memory lane. However, it is something I had set out to do and I really must complete it. One issue is every time I sit down to write, I have to read everything I have written....time consuming and I always find myself editing then. Ugh!
The other concern has been with female issues which has now led me to having surgery this Monday, the 15th. I am going in for what should be an outpatient procedure. We hope for it to go through as that. I have been having ongoing endometrial issues, ovarian issues and bleeding. This is a chance for a closer look, further biopsies and also now having endometrial ablation done. We are really praying this can bring some resolve to some things that have been increasingly worsening and haven't been able to get worked out by other means. Please keep this in prayer.
Depending on how things are going, I will either update here or FB.
Lots of love, Tracy (and Katia)
PS I will try to get Katia's creations pics taken by this afternoon, and posted.
March 2, 2013
A bit of time has passed but quite a bit has been going on and yet again...some things are just wait and see.
Katia went and had a boost of IVIG which she really needed to help her fight off what she had been dealing with for a while. She didn't have the flu but had been sick for a while. I ended up with the flu with a few times so it really dragged things out around here and of course it is always concerning for Katia's sake and hard for me to fight off due to asthma and the fact my own counts stay low due to some of my medications. However, that seems behind us.
Katia is a delightful 13 year old!! She is really trying very hard in school and although she struggles with feeling sore much of the time and is very low on energy, she isn't one that likes to lay around and is always eager to please Ms. Michele (her teacher since 2005).
In some areas, she has shown improvement and is now in the 4th grade level and in others, especially math is still in the 1st and 2nd grade grade level which is very frustrating to Katia. She isn't so much upset about the level (she doesn't quite catch on to that) but more that she really works hard to understand and then forgets very quickly any progress she makes.
I understand this completely because my memory issues are more short term loss so I see and feel the frustration. Trying to follow a 3 step recipe is like trigonometry these days for me these days so Katia and I are a team and use our brains together.
It is difficult to know something should be simple and for me, things that I once took for granted and hope to regain, are just not there.
I still have appointments to follow through with. One of which is a memory function test with my neurologist. Thing is, we have forgotten about it twice which apparently is looking good...
There has been a lot of appointments with scans and biopsies for one set of issues and then other appointments for the neurologist and 2nd opinions so it is pretty much non-stop.
I have given up certain foods and artificial sweeteners as well as made changes along the way to do my part so I am hopeful something will click.
I once had a photographic memory for the most part and now I have to have a book or voice recorder with me all the time or nothing is retained beyond 5 minutes or so.
I do enjoy reading which is good because a majority of my day is reading and that includes reading things I have read multiple times but need to get the information again before I can write about it or move forward on a project or make a phone call.
I am pretty honest if I run into someone or have an appointment and have to answer a question that if I don't have the answer in my phone (which I tell you, smartphones are a God send!), then it is pretty much useless to ask.
The great thing though is my long term memory functions pretty well as long as I haven't a stressful day of trying to search for things I have lost (happens sooooo much - like tonight) or if I have been to an appointment and had a discussion about what is coming up next. Those seem to really drain my brain and physically wear me down. It is just mentally and physically a lot even if it is basic information.
Day to day basic things go smoother now which is an improvement.
I am extremely grateful for Myron and the fact he has always stepped in with Katia whenever necessary. He is also so helpful at both of our appointments and asking the right questions and understanding the answers. Two heads are better than one and we can discuss things later. I always have and still do take plenty of notes. Hopefully I don't lose them:)
Katia has taken a great deal of pride in keeping her room tidy which she has always been good at but she is big about doing her part and being independent when possible. She makes breakfast for herself and can make some pretty great egg, ham and cheese sandwiches using the microwave. She is always anxious to help me out in any way.
She struggles a lot due to pain and although the kitchen is set up with a step stool for her to get up and down and she has a step stool to get up and down on her bed or to the sink in the bathroom, it is a lot for her to go about her regular days.
Treatments and medications have really taken a toll on her body.
I am so seriously blessed to be her Mommy because she is such a miracle and it is obvious when I watch how much she has gone through and how far she has come. She doesn't complain about her disabilities but instead she comes up with clever ways to work around them.
Our AC broke this way so we used the time to go "camp out" on the back porch where it was cool.
It has a temporary fix at the moment but the entire unit is bad. It is a very old unit and has basically been a big part of our electric bill.
It has a temporary fix until we can figure out a way to replace the entire system.
Two days later, the electricity suddenly went out and we hoped it was just for a few minutes (which happens) but after 15 minutes I called and they said the hoped to have it on by 10:30 PM. That was hours away. Again, we went on the back porch with some candles and music (and pets who were scared) and just chatted. After about 2 hours we decided we needed food so we went and got McDonalds and sat in the car to eat and charge my phone. Suddenly Katia said, "Lights!" and she was right!
It is amazing how happy that makes a person:)
Then....today, we get up and all TV, Internet and phone system was gone. It seemed the electric being out blew out the Verizon box so after the backup battery ran out, there went the service.
I found that out at 5AM this morning and I called, at 5AM. They actually sent somebody out by 11:00 AM today and service was working again. They replaced a box that I had been saying was having issues.
After all that, Katia told me before she went to bed, "I hope nothing goes wrong tomorrow because I need a quiet weekend."
I agree! We are both REALLY sore because we have been cleaning and cleaning. I clean when I have medical tests or something pending and Katia cleans when I seem nervous or anything.
I get into these modes where nobody can stop me from what I am doing which includes pain. I just pay for it later...
The only thing not cleaned out is the garage.
If I could paint (none of us here paint), the house would have been painted by now...
This needs to get behind us.
I have scans to recheck the cysts and growths on my ovaries this week. There has been a lot of pain going on. However, I do also have active kidney stones and it is hard to tell the difference sometimes.
My endometrial biopsy came back benign.
The second mammogram which was magnified appeared okay but they want me to have an MRI which was supposed to be this coming week. I am going to have to wait till next month. Too much going on and it has to be within a certain part of my cycle. I have to have the scan of my ovaries at the time and I am doing that this time. That is the biggest concern at this time.
I have a follow up with my neurologist coming up to go over the brain scans but I am supposed to do the memory function tests prior to that appointment.
I have to remember that though....
My phone reminds me sometimes but I tend to hit dismiss (that is bad).
So, I think that is a catch up over what has been going on.
Katia's upcoming appointments are regular clinic visits, IVIG, cardio and some things I would have to look at a calendar for...
I will try to update sooner than later.
Thank you so much for your prayers and the birthday cards for Katia.
She is certainly growing up. She is turning into her own person and, as always, is a joy to be around. I think she is one of the coolest kids ever!
Her drawings are excellent and she is brilliant with her sewing.
I hope she can continue with both. She is very creative and it makes her happy and keeps her occupied and busy. She gets so excited when she finishes a project and can't wait to show it off:)
Her dream is to meet Tim Burton and share her ideas with him for his movies. She would adore working with him!!!
Personally, I think she would be nervous to meet him but I also think she would get over those nerves in two minutes and then get down to creative talking:)
She hopes to make things and sell them to people who will love them and care for them.
That's my Katia!
Lots of love, Tracy
PS I started a "Summary Page" of headlines, breaking news and what I tweet in a day for those of you not on Twitter. You can find it by going to My Rebelmouse Page. It is a good alternate way of keeping up with what I do on Twitter.
January 25, 2013
Tomorrow is a big day!! Katia turns 13 which isn't so much hard to believe but is just amazing to think about and is such a lot to be grateful for.
We were reading over the beginning part of her journey and it reminded me of people commenting on my strength throughout these years.
None of us can plan on what will happen tomorrow, next month or anytime. However, I have always known I am never alone and even in the worst of times, when I allow myself to let go of trying to keep full control of everything, it has proven time and time again, God has always been there.
Things may not always have gone in the way I would have done them or wanted them to go but then again, my way is not always (hardly ever) the right way and although I think of myself as being a resourceful person, who am I to think I know it all?
It isn't strength that I have or knowledge and years of experience but it is peace and knowing that I am never alone.
Katia understands this as well. She is a blessing and I am honored to be her mother. She is smart and funny. Katia is so creative and she doesn't let all she has gone through hold her back from becoming all she can be. She is caring and doesn't like to see anyone else hurting or upset.
I think back to when Katia entered my world on January 26, 2000 and we were just "hanging out" that first night in the hospital when she wouldn't sleep and I couldn't sleep so I handed her that famous brown shirt she hasn't let go of since....
I knew she was going to grow up to be one cool kid!!
I am glad I could share her with so many others and I think her life will continue touching peoples' hearts for many more years to come with her words, her creativity and the delight and joy I know her to be!!
I love you Katia!!! Love, Mommy:)
January 15, 2013
For those that follow my Facebook page, you know I have been fighting the flu for a while and Katia had started feeling bad as well. Here is just a short update.
I seem to be improving...the cough is still there but getting better. Katia however is still going through her cold, stuffy nose and a quite bad cough. She isn't able to sleep due to the cough. Her added weight makes it all worse and is getting her really frustrated. She is able to able to keep fluids down and she can eat things like soup or white rice but the coughing makes her sick which brings (gonna say something gross here) mucus. Not such a bad thing to get out of her system. She hasn't had any fevers but she is worn out. She typically doesn't like to stay in bed even if she is sick ( had enough of that by now) but she is laying low due to lack of energy. Please keep her in your prayers.
PS I promise more of an update in a bit. I hope each of you and your families enjoyed the holidays. We want to thank you so much for the cards and the wonderful holiday wishes. You know how much Katia enjoys these times and decorating:)
She will become a teenager this month. Being 2013, Katia will become 13. Hard to believe! We are grateful for each year, month and day and always blessed to see what Katia's years have in store:)
On a sad note, my uncle just passed away from fighting the flu. He will be missed by so many and this was very unexpected. Please keep his wife, children, grandchildren and his many friends in prayer.
November 23, 2012
I would say "time flies" but actually, I keep realizing I need to come by and do an update and it just doesn't happen. The day comes to an end and.... no update. I am so sorry:(
So, let's see. What has been going on? Quite a bit really. I will try to back up from the last update and fill you in.
Okay, shoulder healing? Well... I would say first of all, there is definitely much less pain so on a scale of 1 to 10, it usually around a 3 or 4 which is a huge improvement. I didn't so much stick to my PT visits (primarily due to the copay cost) but I have been pretty good about doing much of what I was supposed to do at home. I still have limited use of the arm but there is continued improvement. I am not a physically strong person on a normal basis anyway. According to "Wii Fit", I am "unbalanced". Yeh! I think that Mr. Wii needs to remember who can unplug him... (not that I am bitter toward his/her opinion or anything...) He says the same thing about Katia which she doesn't much appreciate either. But hey, we try. It is fun, enough:)
FYI: There is a 9 day break between that part of the update and this (see what I mean...)
Okay, so with Katia, she has been having a difficult time lately. A lot of pain issues. She is quite puffy which is hard on her frame. Mind you she has severe osteoporosis, stands just around 3' 4" and weighs around 60 lbs. That puts a lot of strain on her overall body. Her height is average for a child around 3 1/2 yrs old but she has recently started growing more puffy and it is not only causing health issues but it hurts her emotionally as well and makes her unable to get up and down from the sofa, her bed and causes her to have difficulties walking around and just doing things she typically does.
She is also showing more signs of her GVHD (marrow rejection) flaring up again. This has happened on and off and we have been handling this more with creams for the skin instead of going back up on her steroids. The steroids have been the main way Katia's body responds in a positive way (positive only in terms of holding off the GVHD). However, the steroids are hard on her overall body. It is hard on her organs, bones and obviously hasn't helped in her growth. We have all come to terms with Katia not growing. She is fine with her height as are we. Our hope is that her bones and muscles will strengthen. This obviously takes movement, exercise and overall health improvement.
She was doing regular Occupational Therapy visits but due to other strains, we had to lay off of those visits and will hopefully pick those back up.
Katia isn't one to lay around, quite the opposite actually.
She has been especially good this year with trying to improve with her school work and sticking to a daily routine around the house. She has always been quite independent in the house as far as making things in the kitchen or keeping her room cleaned and doing as best she can with bathing and getting dressed. Katia is a great example of not giving into a disability but working around things by working with your abilities. She comes up with the darndest ideas to work things out.
She has really moved along with her love for sewing and creating her own "creatures". As I have said before, she is extremely inspired by Tim Burton, his movies and his art. She has been for a long time and has always been one to draw and sketch but now she will change nearly any stuffed animal into something entirely different or make something from scratch using socks, stuffing, buttons, material and whatever she finds. She is very creative!
Katia has her first pair of glasses! Yep. She is in progressive lenses and she loves them!! She was very happy how well they help her.
She can't really see out of her left eye but the glasses do help her right eye so it is beneficial for school, watching tv, sewing, everything.
Katia is progressing with her reading. She comprehends well when reading around a 2nd grade level but can sound out and manage reading above there.
She is working on both addition and subtraction math fact sheets using time lines and other tools which help her work through problems.
She is happy to do well with her school work and she adores her teacher!
Our hope is to see Katia start feeling better and go into the holidays with more energy and less pain. As we celebrated Thanksgiving yesterday, we remembered Thanksgiving 2003 when Katia had recently relapsed with leukemia and need a bone marrow transplant to survive. We had been unable to find a match and Katia had stopped eating anything by mouth. On that Thanksgiving we were so happy she had taken a few bites of turkey! I clearly remember that feeling of happiness.
When your child is fighting a deadly disease and you see so many families around you losing their precious children to the same illness, it doesn't take much to make you count your blessings. Life takes on a new meaning. Life is not things or even what may be the focus of everyone else in the world at that moment. Life is what is going on right in front of you and the fact you never knew this was coming. Suddently you are in that marathon you once watched on TV or that commercial that once played and you paused because as a parent, you felt bad for "those parents". Life is about that goal of doing whatever you can do to hold your child's hand as you walk out of that hospital with your child as a survivor no matter what you were told about the prognosis or the statistics.
Those feelings never go away. Here we are 9 years after that Thanksgiving in the hospital and Katia is just as fragile, fighting rejection issues, low immunities and ongoing pain. BUT, we are almost 10 years beyond her prognosis date. She lived and we are so blessed to be able to say that.
So many children are diagnosed each day and many still don't find matches (please register as a marrow donor at bethematch.org) and families find themselves in a place, on an oncology ward which they never dreamed they would become part of. I can't remember what I eat for breakfast a lot of times or if I eat breakfast but details from the hospital and those I have met along the way are very clear in my mind. I met many of the bravest children on earth, the most loving and courageous parents and doctors and nurses that extend their love in countless ways.
I will never forget many things because they are part of who I am and who I will always be. I live each day with my hero, Katia.
I never knew when I was watching those marathons or commercials my life would be affected by cancer in the way that it was or how it would touch me, change me or mold me but I am blessed to have my daughter alongside me each morning, afternoon and night.
For those that have followed Katia's journey throughout, many have registered as marrow donors, donated umbilical cords (which is how Katia found her match), become regular blood donors, shared the need for marrow, cord, blood donors and because of this, lives have been saved.
I never knew when I started sharing Katia's story how long I would share it, even if her story would be a positive outcome or if I would be sharing bad news at some point. I thought about that for quite some time before I started her site. I wondered if I wanted to get more people involved in her life if there were a chance for a negative outcome. Then I figured, none of us know where our lives may lead but all of us touch the lives of others and I knew Katia's life was meant to touch others, one way or the other so I started her Caringbridge site in November 2002 after a serious situation which rushed her into the ER and we nearly lost her.
I appreciate all of those who have followed her journey and kept her in your prayers and continue to do so.
From my heart, I thank you:)
Lots of love, Tracy
September 2, 2012
Finally, here is an update that has been long overdue. For those who follow me on Facebook, there have been small updates here and there, so there hasn’t been such a long span in between time.
A lot has been going on that has kept things quite hectic over the summer. This has definitely been a summer of appointments, that’s for sure. Between Katia and I, we are keeping Myron very busy.
Katia is doing well with her Occupational Therapy. By well, I mean she seems to progressing. Some things are difficult for her so she may not always be happy about it but she is at least understanding about what they are trying to accomplish. We are grateful she is able to have these appointments. She does enjoy the therapist she works with:)
Her IGG count was low at the last clinic visit but due to Tropical Storm/Hurricane Isaac we had to delay making the trip over to St. Pete to get the IVIG dose so that needs to be worked back into the schedule. At this time, I am not driving at all so every appointment goes through Myron.
I had surgery on my left should on August 1st. It had been sore for a while, some time. In July, I started having issues with not being able to move it much so I went in to have an MRI and there was a tear in the labrum as well as a spur that was interfering with each movement. I was sent to an orthopedic surgeon. It progressively became worse each day but when I went to the surgeon, my idea was to try to delay any surgery until the end of September due to so much already going on. However, he did an exam in the office with my moving my arm and feeling my shoulder, took a look at the scans and wanted to do the surgery right away. It was scheduled for a week later.
It was a good thing. By the time I went in for surgery, the tear had become a hole. Delaying for a month could have been the difference between repairable and irreparable. However, the surgery was a success and I am currently on the
I had been in an immobilizer for a few weeks to keep the shoulder from any movement but that was removed during the third week in August and I am doing physical therapy now. That is going okay… I am getting movement back slowly but I practice things at home and use a lot of icepacks for pain. I am extremely grateful to have help around the house!
Sharayah has been here since the middle of July so between Myron and the girls, someone is usually around to do whatever needs to be done. I am pretty stubborn though but once I get hurt once or twice, I give in, quickly.
Another topic, for a while now, I have not been able to drive. There has been quite a few concerns with some neurological issues going on so I have undergone quite a bit of different tests, had multiple scans done, switched around meds, ran labs and although we have ruled some things out, we haven’t found the answer.
Throughout the summer, things have appeared to worsen in some sense. As most of you know, if you follow my writing, I have stopped. I notified different publications that I either wrote for or submitted into that I didn’t feel comfortable submitting due to my inability to really concentrate, find my words or clearly say what I had initially set out to cover.
The fact this was affecting my writing was very upsetting to me because I have been working on writing Katia’s story, writing is a way I have always expressed myself and I have always loved writing. It has been very stressful (to say the least) to not be able to sit down and do something I have always enjoyed. However, when I feel I can focus for a short time or I just want to see what I can write on a given topic, I still will sit down and write. I know I owe quite a few response emails but most likely, it will be some time on those.
So, where do we go from here? At this time, I am set to go through more tests. Yeh. I was trying another medicine to see if it would help stimulate my brain, help with memory, focus and concentration. My goal is to be able to see a difference in day to day things like sitting down and having the ability to work through simple things that I could easily do just a year ago or even six months ago, I think.
Myron has had to pretty much take over Katia’s appointments for clinic and therapies and oversee a lot of her things at home as well as be at each of my appointments so he can speak up, listen to instructions, be part of discussions when I may not be following and really be a very crucial part in so much of what goes on. I have always been good about keeping notes, ledgers or copies of labs but it goes beyond that and he understands what it takes.
Typing this update or an email is like putting together a college thesis. Simple computer issues have turned out to be as difficult to me as someone more new to computers. Being in the kitchen? That is close to running a five star restaurant (trust me, my kitchen is not a five star restaurant). So, I am hoping to see those things turn around when we find an answer.
For now, I just have to stick to what is put before me and pray for each day to bring improvements. Please do the same.
Coming up, I have a renal ultrasound and some blood work to have done due to what seems to be issues with already existing kidney stones. There are always some around when I have scans or ultrasounds but now the symptoms have changed so the ultrasound is to make sure there isn’t blockage again. That is Tuesday.
Also, coming up (but not sure of the date)I have a Neuropsychological testing, lumbar puncture and a PET Scan.
I am not sure when I will post the next update here. A lot has to do with how I am feeling and what is going on. You can keep up with me on Facebook either by sending me a friend request or by following my public profile. I don’t post EVERYTHING on the public profile but it does keep people somewhat updated. It is a way of my Twitter people knowing what is going on as well as those that follow my writing.
The guestbook here is closed usually due to the fact anyone can post in it and this page is published on multiple publications. Katia’s story is the center of my world and as I have always said, she is my hero. She has touched so many lives and I have often heard back from people who registered as marrow donors through her drives who were called on to donate for others. Also, many people have become regular blood/blood product donors and that is a huge part of saving lives on a daily basis. Without that, many people couldn’t survive.
I love to hear how Katia has touched the lives of others. It warms my heart and it was the reason I was writing her story. It was more than just her story and I hope to continue working on the book. I am very hopeful something will turn up and I can be back to writing and my old self (yep, I am 43 now) but for now, just keep these things in prayer.
Until later. Lots of love, Tracy:)
June 20, 2012
So, it has been a while since I have jumped on here and posted an update.
There have been a few changes. Katia has picked up a new hobby, sewing! She loves it! She is doing quite well and learning more and more each day. She just uses what she finds around the house and can make some pretty neat things so far.
She likes drawing little creatures and now she is making them. She uses different socks, buttons, yarn, cut outs of materials and I have to say, she is crafty!! She definitely will have to work beyond my sewing capability of putting on a button and she has already gone beyond that.
She just started Occupational Therapy at the hospital (OT) which I think is going to be very good for her. We are looking at starting Physical Therapy (PT). She really likes the girl, Alana she is working with in OT. They will do a wide variety of things but overall it is to help her in everyday functions and we have already learned some neat ideas to use around the house.
PT will hopefully help with some pain issues that Katia lives with on a daily basis. They will look at what she is currently one, her last scans and such and work around all of that.
I just wrote an article called, "Coffee and Miracles". I know, the title! Katia thought it was funny. Well, she is kind of the main focus of the article, and coffee. If you know me well, that makes sense.
Not much else has changed from my last update.
I will be back later.
Hope you are enjoying the beginning of summer break.
Lots of love, Tracy
May 27, 2012
You know how it is when you keep saying you are going to do something and it doesn’t happen? Well, that is what keeps happening with a Caringbridge update… Sorry.
In some ways, it seems so many things stay the same and not having answers just feels like I am writing a “downer” so I prefer to not update at times. But, then I don’t like it to seem that I am just not keeping things updated.
So, here is a bit of information on some upcoming plans. We are trying to work with Katia and her pain issues which are just growing worse. She had a PT appointment which we had to miss due to my having tests scheduled with my Neurologist that couldn’t be delayed.
Seeing that I am unable to drive and Myron really needs to be at my appointments as well, we had to reschedule Katia’s appointment.
She has an upcoming OT appointment and hopefully PT can be scheduled at the same time or soon after. They are evaluations to more see where she is at and hopefully figure out her needs and capabilities. A lot of this has been being discussed and a lot of the lab work has already been done.
Katia has had more puffiness than usual as well so we are keeping an eye on that to see if she needs to return to the cardiologist. Her labs aren’t really showing any other reasons why this would be going on.
Her issues with choking has come back, not as bad as it has been in the past but it is possibly time to go back in and open her esophagus again. If we wait too late, the recovery takes longer and is more painful. Katia is good about notifying us when things are getting bad and she is letting us know so we are going to see that doctor and usually that can get set up rather quickly.
School for her is coming to a close which is good because she has been feeling very poorly which effects her with her classes. Hopefully we can get her feeling better before school starts again. Get her some energy and a plan set via OT and PT. Once they give us some guidelines and let us know her abilities and what to watch out for, she can feel more confident of what she can and cannot do and we can have that same assurance.
Katia tries to carry on with her day to day things and keep up to something but she does wear out easily and gets hurt easily. Being in pain all the time is one of the things that really gets to her a lot. She understands why this us but it is not something she is willing to just accept. She wants to make it better.
She has had quite a struggle with school but has shown improvements in some key areas which gives her hope and hope takes her a long way. She can read more than she once could. She struggles with spelling quite a bit and memorizing. Her memory is as bad as mine. But the fact she can read more is something she is proud of.
We have a project we are going to be working on via YouTube. I shared the information on Facebook but we will continue to be sharing some of Katia’s projects on my YouTube Channel (tracysolomon). It will give Katia the chance to show some of the creations she makes, short stories she puts together, artwork she draws and also allow her to talk on YouTube and get some feedback. I think it will help her with her creativity, reading (we will be using some cue cards) and just help with her overall confidence.
She is excited about it and we can move along as her health and mine allow. So, what is up with me? Well, I will summarize this. I am still going through a lot of pain issues and muscle weakness. The concern is from some previous scans that I had run and the worsening of headaches and numbness, some vision problems and ongoing ringing in both ears. They want to do an MRA of both my head and neck to re-check some areas that had shown up the last time I had one.
I did have an ambulatory EEG which came out good so we are going to try some medicines to try to help with my memory issues depending on how the MRAs look. My biggest concern recently has been my memory and how it is affecting my day to day life now. I am hoping something can be done to correct or help that. It is a complete opposite of my normal self.
Doing the many mundane tasks have become difficult and many things have fallen over to Myron. Anyone who knows me knows I am a control freak. Now Myron is has to be multiple places at multiple times and on top of that he is the sole income. I need him to listen to what Katia’s doctors are saying and mine though because I rely on him to remember things even though I can carry on discussions fine and with Katia’s care, I am able to retain most things because my long term memory is not a problem.
There should just have to be a rule that there can only be one issue at a time or something. I know many families face these issues. This isn’t the first time we have gone through this. This just is different this time because typically I can keep things much more organized in my mind and it is frustrating to not be able to do this.
That is one of the reasons I don’t update often. It takes a very long time to type these out. I have to stop and go back. I know there will be errors (I hate that) and sometimes things don’t tie together well. That is why there has been such a gap in all of my writing.
I am working on a book of Katia’s story which is a priority for me to see through, no matter what. It has had many pauses along the way but it is something I have prioritized to see through and get it done the way I want to see it completed.
Please keep these things in your prayers. I very much appreciate this.
Sorry for any stumbles or typos along the way. I am sure once they can get my brain back to functioning in a more accurate way I will look back on this and want to use a red sharpie marker all over it:)
Lots of love, Tracy
May 23, 2012
This is a story Katia wrote and illustrated today. Wanted to share it with you.
Have a good day:)
Love, Tracy and Katia
April 28, 2012
I want to start off by saying thank you for stopping by. Some of you have been coming by here for the entire time this site has been up.
On April 15th 2002, Katia was diagnosed with leukemia so just recently, it was 10 years ago. That seems so long ago but with everything going on, in some ways, it doesn't seem that far away. Hard to explain sometimes.
One thing for absolute certainty, we are blessed, so blessed. Katia's life is a HUGE blessing and a miracle in so many ways.
I am so glad I decided to start this site when I did.
If you have been here from the beginning of this site, it was started after an absolutely horrible scare where Katia had a tremendously high fever where we had to stop at one ER on our way to ACH because she stopped breathing in the car. The fever registered at 107.8 in that ER and it is so hard as a parent to remain focused and not panic but we had to.
Katia was rushed from that ER over to ACH and was completely delerious with fever and in really bad condition. We were extremely worried.
Obviously, we know how it turned out because she is here today. It turned out to be an infection in her broviac, the line she had in her chest to receive her medicines, chemo and to draw blood from. That infection just took over because her immune system was so bad. Within 48 hours though, Katia looked and acted like nothing had happened. It took us a bit longer.
I remember making a decision to start the page and share Katia's story but I did consider the fact that things could either go in a positive direction or a negative direction. I had seen it both ways with many children already. I also knew that all of these fighters deserved to be known, have their stories heard and make their mark on the world. They are so amazing! So, I was willing to take the risk.
I never, in a million years, realized how many people would grow to love Katia and follow her so closely.
I just want to say thank you and let you know how grateful I am.
Last night, she was talking (a mile a minute like she typically does) and joking around and I couldn't help but think back on that night, how scared I was at that moment. Part of me knew Katia had a future still and I found comfort in that. I still find comfort in knowing there's more in store for Katia. She has big plans for her future and I am always glad to hear about her dreams for years to come.
She has worries but her dreams are much bigger and it's those that she focuses on.
Lots of love, Tracy
March 26, 2012
Figured it was time for some type of an update, right?
I will start by telling you why I have been a little short on updates, writing articles and seeming a bit "off the map" when it comes to writing in general.
I have been having "issues" (nice way to say it) with my memory, ability to focus and muscle weakness, flexability, balance and the list goes on. My neurologist is trying to rule out any new types of seizures, some neuromuscular diseases and until we can figure out what is going on, I have been pretty much laying low on a lot of things.
I realized I should lay off of writing when what I was sitting down to write was totally different than what was ending up on the paper. It was better to stop than to have something under my name turn up and be nothing like what I was trying to say.
So, that is what is going on in a nutshell with me, no pun intended.
I have been working on a project of writing Katia's story in my own words which has really been put on hold over the past two years and I am still working on that project as much as possible. It is very important that I see that through.
How is Katia? Well, she is my little source of strength, inspiration and humor. Katia is amazing. She has been having quite a rough spell on and off though. Her cortisol level dropped down again so we went up on her steroids to bring that up. She was getting very weak to the point she was falling and I wasn't able to pick her up at times. Myron has been staying home to help out with both of us.
By bringing up her steroid level, that did help with her weakness. She has been having a number of issues with pain and her explaination at times is she feels like her legs are turning very brittle as well as her back, like they are just dry and ready to crack. That is how she describes her discomfort.
Katia refuses to let the day go by without getting up and trying to "make the day go by faster"... She is very much into creating her little monster creatures. She is very creative with drawing and designing. She makes a lot of things out of socks, buttons, yarn, strings, anything she can find really. She makes quite a collection of little monster creatures (they are not scary) and names them all. I had her take pictures so I will post them on Facebook. My Facebook is under my name if you aren't following. You can subscribe. A good amount of my stuff is public.
I will try to update the pictures on here as well.
At the moment, I can't think of anything else to add on here but I am sure there are more things coming up.
I do have an upcoming ambulatory EEG and some tests to take and Katia is going to be doing more PT.
Please keep that in prayer.
My most important issue right now is my memory and vision issues going on and I really hope we can find out what is causing those issues. Quite a few things have been going on for an extended period of time but I do like the neurologist I am seeing now and I think I am in the right place at the right time.
I have felt very confident with Katia's care and we are so grateful for her team of doctors and the whole team at All Children's Hospital. They have been truly remarkable and beyond.
Lots of love, Tracy
December 24, 2011
It is so unbelievable this year is almost over!! It will soon be 2012. WOW!
I want to wish each of you a very Merry Christmas and a Happy New Year.
Thank you so much for your continued prayers for Katia and those that have sent cards! She loves them! Mail is always great. I was reading something the other day about the amount of mail through the United States Post Office and just how much it has decreased over the years and thought back to the days of when I had penpals (remember those??) We used to have them through school and I had one in Iran for nearly a year. Now there is Facebook, Twitter, Google , email, texting and I have to hope I don't loose my book of stamps in between the times that I need them. I have found some really great online programs that you can fill out the cards and they will mail the actual card for you so although YOU never touch the card, the person you are sending it to will receive a real card in the mail:) It is like we both win!
So, as for Katia this has been a bumpy year but we are always grateful for how far she has come. Her reading has improved and she was able to receive the Rituximab treatments. GVH can be a nasty disease to fight against and steroids are love/hate relationship but we at least have them and Katia still responds to them and her GVH backs away as long as she is on them or we increase them. Our prayer is always to get her off them though. So, hopefully 2012 will be the year for that.
This year has been a rollercoaster for me with my own health so we hope 2012 will be an improvement. I am currently undergoing some tests so hopefully going into this next year I will receive some answers. I have taken a pause from writing which includes here as well due to some of these issues but I hope to be back up and going sooner than later.
As we go into each new year, the prayer is always for new treatments and medical discoveries that will bring comfort, cures and hope to more patients and their families. That would answer so many prayers, Christmas wishes and mend more hearts than could probably be imagined.
May you and your family have the Happiest Holiday, a Wonderful Christmas and Happy New Year. God bless you.
November 14, 2011
Updated the area "Katia's Story" near the top with a brief summary over this last year.
That idea of "summarizing" Katia's story certainly has drawn out into a more lengthy process but I do try to be brief:)
Katia is moving along with her treatments for the GVH flare up. Not too sure how it is going really as we are still trying to wean down on the steroids as we had really increased them a lot.
She still has issues with nausea. Some days are better although last night wasn't good. She ended up throwing up but not much. Felt worse than what came out.
She is having shortness of breath and dizzy spells (as I mention above) so she is to have a repeat ECHO hopefully this week as well as treatments.
Things have been busy to say the least.
We hate to see Katia feeling so bad and she feels bad to feel bad. Hard to explain. Katia likes to make others feel well.
Fozzy has just been AWESOME!! He has to be on Santa's "good list" and that is his birthday as well:)
The pets are just all around great at making people feel good.
Things have been difficult lately but when I look through some of the journal history (I am working on a project), it brings back a lot of emotions as well as shows how far we have come through a journey nobody could ever plan for or imagine being faced with.
I see names of kids in the entries that have passed away and it is like they were just here yesterday and then I remember the day they passed away.
When I look at Katia, she appears so much the same because of the fact she doesn't grow. She is different in many ways but in some ways she is very similar over the years. It is like some things are frozen in time. Not sure if that makes sense.
I know I am so blessed to be her Mom and also to have been able to communicate with so many others who have children sharing similar journeys and loved ones facing these daily battles because everyone has such a story to share and words of wisdom.
I don't get on Caringbridge like I used to and as much as I miss that, part of me knows that there is a time for everything and what I do participate in at each point in my life is for a reason.
I love to hear from each of you and my email is always available.
If you are new to this site and have a child or a loved one facing cancer or blood related illness, please feel free to email me. If you have been around for a while and would like to update me on the status of your loved one, please email me. I don't want to lose touch.
If you are on FB or G , please look me up.
Of course, you can find me on Twitter.
All of those are under my name.
My website is below as well as the ladybugkatia.com with some very useful links.
I will update with information from the ECHO once I know more.
Lots of love, Tracy Solomon
November 2, 2011
Well, I got on here before it had been another month (at least by a few days)...
It has been a bit of a bumpy ride but Katia is on the Rituximab treatments. She had a bad reaction on the first one so it had to be stopped so she hasn't been on it long enough to see if they are yet going to be beneficial against the GVH or not. We are slowly trying to wean the steroids back down since we had to really increase the dose.
As for how Katia is feeling? Well, she has been extremely sore and although there are other things going on, that is her biggest dilemma. She gets a lot of aches throughout her body especially in her legs and back but also belly pains and nausea keep coming around so she hasn't been feeling well. For those that have followed Katia for a long time, she is not one to really let things keep her down though. She can feel really bad and still get up and walk around because she hates to be stuck in bed. That is a good thing though because the worse thing for her is to lie around too much. So, it works out.
Her appetite comes and goes but when the steroid dose went up, her appetite increased (for those that have been on steroids, you'll understand). We were surprised it didn't go up more but it did increase and her nausea seemed to improve some as well.
She hasn't been drawing too much because her hands have been sore but she did tell me a fantastic story the other day which I think would make a great book (seriously!!) so we are going to work on that together.
We are hoping over the next few treatments to see signs the GVH is being controlled by the treatments and not just the increase in steroids. She has been on steroids far too long (since 2004) and each time we try to wean, the GVH flares which can be life threatening.
We are however grateful for the fact the GVH does respond to the increase in steroids at least. It would be absolutely horrible if it didn't respond to anything.
So, this is kind of where we stand. Wait and see how the treatments go and try to go down on the steroids while we watch her counts and body's reaction.
Of course we are forever grateful for the care she receives because the quick reaction and dedicated care as well as staying ahead and attentive is really life saving in this case. Katia feels very secure with her doctor and everyone that helps take care of her. That is so important and makes so much of this journey much more tolerable in times that really matter.
People always say they don't know how we do it, how we can be so strong. Well, I first of all know I could never do any of this without God. I also know that if I ever had looked ahead of Katia's diagnosis I would have said the same thing but as a parent, we do whatever it takes to take care of our children and those around us, hold us up and help us just as we would do for others. We gain strength as we go along and there is no right or wrong way to do this. It is difficult and draining and you just face each day as it comes. Really, you can't plan too far ahead because you don't know what really lies ahead but none of us do in all reality. I think once we all see that, it becomes clear that we really are in this together and it is very important to help those around us.
The saying with the Katia Solomon Foundation is "Love comes back to you when you give it to someone else."
This is very true and in many ways. I was talking to Katia about this the other day and her way of explaining this to me was just so sensitive and in a way I hadn't even thought of. I truly love sitting down and chatting with her because she is genuine and doesn't really hold back. But one thing Katia thinks is when we do anything, is to just do everything with a good heart.
I will try not to be so long between now and the next update. Not making any promises....
I have been having a few challenges of my own with some medical issues so that is slowing me down a bit (a bit more than a bit) but I am trying to get my system worked out to make updating easier and a few other things more syncronized.
We'll see how I do:)
Lots of love, Tracy
PS If you are on Google , look me up. You can also subscribe to my Facebook w/o the need to friend if you would like and just follow my public status updates. Isn't it crazy how things change so often...? I don't do much on Google but I will once it picks up more. I will see how it works out.
October 5, 2011
I keep saying I am going to get on this CB site and update about what is going on with Katia but each day, something new is going on so I better update...
If you have been following Katia for a length of time, you know she has had chronic Graft vs. Host disease since she had transplant in February 2004. This has flared up in the past and recently, she started having more and more of her "mystery spots" which appeared to be related to GVH (graft vs. host) but not confirmed.
However, she again suddenly flared up with what appeared to look like a chicken pox breakout although we knew she hadn't been exposed to chicken pox so the first thing to look for was a confirmation of GVH and how we could again get it under control.
GVH has been one of Katia's main battles throughout her cancer treatments and is the reason why she has continuously relied on Prednisone (steroids) since transplant. It is the one thing that has kept her GVH is continuous "check" but the need for her to come off of this is also very important and they have been getting weaned down at an extremely slow pace.
Her immune system has slowly been building up and as that happens, her own system tries to fight against it, therefore we have GVH.
So, the plan now is to start on treatments using Rituximab Infusions which will hopefully fight off the GVH by killing off the cells that are causing this reaction (also affecting her overall counts again). Depending on the overall response will determine if the treatment is working. Due to how aggressive her GVH was becoming we had to increase her steroid dose quite significantly (more than 4xs the dose she was on) which hopefully we can wean back down on.
Katia had been very nauseated for quite some time, very sore throughout most of her body, lacked energy more and more and was just increasingly going downhill. Since last week, she has been vomiting and basically down to no energy and not being able to eat. She can drink fluids pretty well though and is able to keep her medicines in so that is good. She is eager to get this new treatment going and we are all very hopeful for this to work in clearing up the GVH while still being able to wean the steroids off.
Please keep this in your prayers. We have been prepping for more extended hours at clinic (each infusion is 4-6 hours) so we have our games and gadgets ready and are extremely grateful, as always, for such a great medical team and the fact they are always on top of every step in Katia's care.
For those that have been following on Facebook, my updates are a bit more up to date but lack detail. You can also subscribe to my Facebook for public postings but those don't include anything about Katia (privacy issues) only things I post and wish to share publicly. When I post an update here though, I will note it there and that will be posted publicly that there is an update waiting here.
I'll try to post more next week once we get this first treatment behind us.
Sept. 23, 2011
Didn't realize it had been so long since I had updated. I do more small updates on Facebook but I need to keep this kept updated as well. this journal has proven to be very helpful in many ways over the years for many people but also myself whe I can't remember when a certain test took place or anything in particular during Katia's rather lengthy journey. Plus it has been really nice to sit down and read through at different points. Katia's life may have had many adversities but there has been countless blessings.
As I have mentioned, Katia has been having numerous issues with ongoing pain, cramping in different areas of her body, lower energy levels, swelling around her body, headaches and just overall, not feeling well. This grew increasingly worse over the summer to the point she was spending more time in her pajamas and being inactive and less time being her happy self, which was very hard to watch progressively get worse.
Nothing was really showing up in tests and there really hasn't been anything that would help her feel better.
After Bone marrow transplant in 2004, she rejected it and has had chronic GVH ever since which has required her to be on immune-suppressing drugs all this time which both hurts her and helps her.
She always has bumps that appear (little red spots) that come and go. We have always called them "Mystery Spots" but they have appeared to be GVH related. This past week, she broke out with so many, it looked like chicken pox. We took her in and they did a skin biopsy and today we found out it is a GVH flare up.
For Katia, the thing that has always been the answer for GVH was steroids but we have worked on to be weaning them because she has been on them so long and the side effects aren't good. Her body is getting worn down from many of these medications she has been on all these years but without them, Katia wouldn't be here.
So, at this time, I'm not sure what the plan will be to get the GVH back under control.
People have always asked if she can have another transplant since her body has rejected this one since she received it. the answer is, no. That would only be done if she relapsed with cancer or if her bone marrow failed.
So that is where we stand right now.
Please keep Katia in your prayers. I know you always have.
If you come to follow my FB, please send me a message on FB saying you are coming from Caringbridge.
Katia is not happy about this because of being in pain mainly. She has been in quite a bit of pain for a long while now but she pretty much tries to lay low during the day, do her school work and the pets keep her company (Fozzy, Monty and Ling Ling).
She is doing a lot of drawing right now and will be working on a Halloween book, very excited about that!
She is doing quite well with school and improving with reading. She is enjoying watching movies and playing on Jumpstart.com on the computer. If you have children, that is a great site to check out!
I've been writing a lot and we all stay pretty busy which is good ( I hear it keeps you young?)
If you are on Google , I just finished the sign up which I started in July....took a while since I kept forgetting.
I will update when I know the plans.
PS To read prior journal updates, click on "Read Journal History" on the top of the page.
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