Update on Katia's Procedure from 9/9

September 17, 2009

Just a small (yes, this will be short) update to let you know Katia's throat is improving. She is being able to eat and talk well. It did take a bit longer this time for her to recover from the procedure but she is happy with her throat now.

Thank you so much for your prayers!

Love, Tracy

Today's Procedure (Katia) and more...

Katia went in today for another procedure to have another Esophageal Dilation. She had this done back in February but the area has since closed back up and this needed to be done again. It seems she will need to have this done more often.

This time, she is in a lot more pain afterwards but hopefully tomorrow will be feeling better. She had a time afterward with trying to keep her oxygen sats up as well and then on the way home, she was feeling really nauseated so she has just not had a very good day at all. Last time went much better than this time.

The good thing though is she knows the reward in the end is she should be able to eat again without choking or having the feeling she is going to choke each time. She is happy about that. Right now, she is just looking forward to feeling better, hopefully tomorrow. When she feels this bad, it just really tugs at your heart and then she is still concerned about me. I went in the kitchen to get her something and hit my elbow on the counter (not sure where the funny bone idea came about because there is nothing funny about hitting that) and she sat up from the sofa and in a crackly voice says, "Are you hurt?"

So, that is what is going on here today. Small catch up on other things.

The C-Diff news is she just finished a 21 day dosing of medicine and we will do a recheck of her stools, not sure what the plan is though because even when it is negative it still seems to come right back so... we will see.

What else? Cortisol level, haven't rechecked that but the steroid dose has remained increased. Right after that Cortisol level dropped below 1, the C-Diff came up and the choking episode that was really bad (not sure I have mentioned that but it was really bad and she couldn't breathe or get the food back up like she usually can after a while which led us to today's appointment) came up so we have kind of gotten off track.

Oh, and we have her followup appointment coming up with the Endocronologist on the 28th I think to find out about the possibility of growth hormones.

So, kind of a lot going on right now. Although it seems like a lot going on, in a lot of ways, it seems so many things have been in a pause. It is weird and kind of hard to explain which is why I wait in between updates. Many things seem to repeat with Katia. She is happy to have Ms. Michelle back (her teacher in her Homebound Program) but not so crazy at the idea of having homework again...

She is in 3rd grade with her work ranging between some 1st grade all the way through some 3rd grade things. She struggles in reading and math. She is enjoying reading more than she used to more though.

Long update:)

Please keep Katia in prayer as well as the many others that are in need of prayers.

Love, Tracy

UPDATE ON KATIA

August 4, 2009


So, it has been a bit since an update again. Well, things have been a bit bumpy for Katia. She has had another bout with C-Diff which hopefully is clearing up. We went to clinic today and took a stool sample to see if it is "all clear". She really had a lot of pain and cramping going into finding out about the C-Diff and nausea. The pain during the bowel movements has gotten better but she is still having belly pains mainly in one area and is still having a lot of nausea. Her appetite is almost always non existent. She is however maintaining her weight. She drinks well, has nutrition drinks and nibbles enough at each meal but due to nausea and belly pain, just doesn't feel good.

She seems to have some type of a urine infection which hopefully can get cleared up easy enough. We just handed in a urine sample while at clinic. This just started bothering her in the last day or so.

Not trying to be a complete downer but this isn't really going to be a great update...just a pre warning.

Katia's eyes are feeling better in one sense. They aren't feeling so irritated and dry. The drops she is on right now, Restasis (which she has been on before) seem to be doing better this time helping in that area. As far as anything helping with the sunlight or indoor lighting of anykind, she is very sensitive and continuously keeps on sunglasses. That seems to just progressively gets worse. Each eye specialist agrees, the GVH issue needs to clear up before the eye issues will get improve or eye surgery can accomplish anything on her corneas long term.

Over the past 2 months maybe, Katia has been feeling more and more sore, more and more all over weak it seems and just more and more tired. Then just over this last week, her fingers have started getting stuck while they are bent and sometimes while they are straight causing her a good amount of pain until she can move them back into position. At night when she is getting ready for bed, she is getting to the point she can barely move, she is weak and just flops. This is all quite concerning to us and just irritating to her. She is 9. She has very much slowed down, slower than usual. She has never been typical to her age group, no where close. But, she was on a pace of building more and more energy for a while.

There are a few thoughts. Her regular labs look okay. She just had them drawn today. We go back in first thing in the morning to draw some more labs to look at some more things.

Please keep Katia in prayers and also that we can figure this out and get her back on track. She really is feeling quite puny most of the time. It is hard to watch her feeling so bad. We want to see her feeling well and thriving as all parents do.

Our prayers are with everyone and please pray for those that are in the are currently battling in the hospital or at home that are very much in need of prayers.

Love, Tracy

What is going on in Honduras matters in SO MANY WAYS....

This letter has been sent off to a lot of people as well as many others... to follow more on a day to day basis what I am doing, you can follow me on Twitter, @tracysolomon

This situation can have many different consequences for the people in Honduras and for the country of Honduras.



July 2, 2009

To Whom it may Concern:

I address this letter with hopes that it will concern many more people than it seems to be concerning at the moment. I do not say that with disrespect but with a great deal of concern for both my family in Honduras and for true democracy. I have family in Honduras that are Honduran Citizens as my husband was born in Honduras. I also have a family member in Honduras that is a U.S. Citizen. My husband is a Naturalized U.S. citizen whom has served in the U.S. Army and is a Desert Storm Veteran.
Being involved in both countries with family and having military background in the United States, gives not only a sense of responsibility to stand up and do something on both sides but also a sense of urgency, pride and a need for resolve on many matters that seem to be getting either brushed aside or intentionally overlooked and censored for one sake or another.
For one, the word democracy has been used a lot in the news but yet the definition of democracy seems to be getting stretched and in the country of Honduras, it is not being represented for the Honduran people themselves when the majority of Hondurans do not want the previous president Manuel Zelaya put back into office. Yet, many countries are trying to force him back into office or cut off trade and assistance to Honduras and its people, a very poor country. This is greatly due to the poor leadership over the last 3 years of Manuel Zelaya while he has been in office. Honduras does not need corruption.
Democracy: government by the people; a form of government in which the supreme power is vested in the people and exercised directly by them or by their elected agents under a free electoral system.
Even as everything has become so heated up since Sunday, June 28th, the news has continued to seemingly cover only bits and pieces and mainly be one sided. Also, the US Administration and the OAS as well as UN National Assembly has taken the side of saying that the government of Honduras must take back Manuel Zelaya or face the consequences of “Worldwide Condemnation” (as quoted in an interview by Jennifer McCoy, director of the Carter Center's Americas Program)
Why is this all just coming into focus and the US, the OAS, the UN National Assembly and media outlets so determined to jump on the side of Manuel Zelaya? This did not just start playing out in Honduras and this did not just start coming to light in the Honduran Media.
Mr. Zelaya issued his Executive Decree on March 23rd of this year calling for a referendum to extend his presidential term to be held before July. This is not allowed due to clear Articles in the Honduran constitution concerning the presidential term. There are also strict guidelines concerning any kind of a referendum in the constitution. The Honduran Supreme Court, the Administrative courts, the Attorney General, the Commissioner for Human Rights, the Electoral Tribunal, and the National Congress all declared the referendum to be illegal.
On June 23rd, legislative action was taken by the Honduran National Congress to prevent Mr. Zelaya’s violations of Honduran rule of law and constitutional precepts. The U.S. failed to respond. On Friday, June 26th, Mr. Zelaya issued another decree ordering government employees to participate in the “Public Opinion Poll to convene a National Constitutional Assembly,” which would have again been going against the Honduran constitution requiring he be relieved of his duties and office. The U.S. failed to respond.
I do not believe the U.S. Government was not aware what was going on. Quite the contrary. There was plenty of information coming out of Honduras about what was going on leading up to this Referendum Mr. Zelaya was planning to have and why it would be illegal. Secretary of State Hillary Clinton was in Honduras for a meeting and was made aware of this situation. As this was going on, my opinion as to why the U.S. wasn’t doing anything was possibly due to the same reasons being said for the situation in Iran, the U.S. didn’t want to “meddle”. I did however believe the U.S. would be investigating the issues that were going on with the Honduran President and see a problem with how Manuel Zelaya had gone from a once Conservative President (or at least that is how he campaigned) to changing into a person many of his own party no longer recognized and many citizens felt threatened with him in office. I felt confident knowing the U.S. had sent our Secretary of State down to Honduras even if we weren’t going to make any demands on how their government should run their country, no “meddling”.
The OAS, UN National Assembly and the U.S. has its resources in Honduras so it is not hard to believe each should be very well informed on how Honduras’s Governmental System and Constitutional Law works. As the deadline was getting closer to the June 28th date and Manuel Zelaya kept saying he would carry through with the Referendum Vote even though the Honduran Supreme Court, the Administrative courts, the Attorney General, the Commissioner for Human Rights, the Electoral Tribunal, and the National Congress all declared the referendum to be illegal. But, Manuel Zelaya was determined to move forward.
Everyone in the OAS, the UN National Assembly and the U.S. knew what Manuel Zelaya was carrying out carried criminal consequences according the Honduran Constitution and was not acting alone. When his military leader would not carry out his orders to along with him, he fired him. However, he continued to go about getting the ballots and voting boxes together with the help of others and taking them to his Presidential Palace for the vote to take place the next morning. When he did this, he knew there would be some sort of consequence. A president is not above the law. He hadn’t been able to change that, yet.
Where was everyone when Manuel Zelaya was in the process of defying Honduras’s Supreme Court? Where was everyone when he was trying to use the Honduran Military to break these laws? Where has everyone been while Manuel Zelaya has spent the last 3 years driving Honduras further down instead of helping the people as he promised during his campaigning? Why aren’t the people speaking out in Honduras now being listened to instead of being censored?
Why is the U.S. Government so ready to “meddle” in the Honduran Government within a week of this happening without so much of an investigation or hearing out the Honduran people and only seeming to listen to Manuel Zelaya who was just put out of office by his own government, military and the people of Honduras? Why is it that as soon as he is put out of his country, the outside countries seem to side up with him and forget about the people of Honduras, the citizens of Honduras that aren’t being listened to? Are they not important to anyone? Is there a reason he is more important to the U.S. than the people of Honduras? Is there a reason he is more important to the OAS than the people of Honduras? Is there a reason he is more important to the UN National Assembly than the people of Honduras?
Where is the media coverage? Just like it seems human rights seems to be getting overlooked here so is media coverage. It isn’t that the information isn’t getting out. It is. Twitter is full of information. Blogs are getting information straight out from Honduras. There are Newspapers in Honduras posting information, stories and photos. Univision is covering the story and CNN in español is covering the story. That’s what I know about. The part I am talking about is still most people haven’t an idea where Honduras in located on a map. They depend on our Government to let them know what we are concerned about. The media passes that on to the general public.

Is our government concerned? Is our government going to just try to force Honduras’s hand? If so, are they willing to face the consequences this will most likely cause? Why is it okay to “meddle” here? Is there something for the U.S. to gain? If the U.S. is going to have so much to say in what Honduras MUST do, why is there nothing being said in the news about WHY if this administration is transparent? There has been a lot said in the news throughout lesser involvements with other countries.
Where is democracy? Is democracy only defended in some countries and not in others? Is democracy only for some citizens and not for others? Does the U.S. get to chose where democracy is appropriate or deserved? The U.S. is supposed to be an example not a roadblock for democracy.
I have hope this can be worked out somehow by listening to the people in Honduras that are trying to speak out as well as the Government Officials. The people are trying to tell their stories. Since 1982, the people have worked for Democracy.
I have a lot of confidence in our current administration. I voted for this administration. I believe in communication between other countries and having discussions to solve problems. Since the U.S. has become involved, responsibility ultimately does fall on us in many ways.
Please hear the will of the Honduran people. Listen to the current Honduran Government. Look into everything that led up to Manuel Zelaya’s exit from office. Please keep the Country of Honduras and its people in your prayers.

Tracy Solomon

Update on Katia June 24, 2009

Okay, well so far summer has started off for Katia withOUT a "Bang"! She is bored to say the least. She is having to do schoolwork throughout the summer but not a lot. Mainly working on reading and writing to move ahead. She is progressing very slowly in those areas, as well as math but right now, we are concentrating in reading and writing, forming sentence structure and spelling. She is basically still at a first grade level. So, she needs to continuously work on this throughout the summer. Again though, she is doing just a little each day, but the SIGH that goes along with it is teenage level! I have to jump in for her though. Once she gets started, she does put her full effort into her work. Her handwriting is very nice. Things just really do not seem to be retained well. Letter recognition, writing letters correctly, spelling and phonics, etc. Her reading is ahead of her spelling. Katia is frustrated with this.

We think a good part of this has to do with her eyes being so effected by the Graft vs. Host Disease but also some of this has to do with her treatments and the fact her attention span is small and she still has many days of not feeling well so she isn't on a schedule of every day having a portion spent on education like most children would typically be. So, this means her progression is much slower and therefore, she does school work at odd times and during the summer. Her school work consist of some 1st and 2nd grade work. Her school level isn't looked at like most children's.

So, how is Katia feeling these days? Well, as mentioned her eyes are causing her a great deal of pain and discomfort right now. Two different types of issues bother Katia's eyes. One is discomfort in the way of irritation like the eyelids and the actual eyeball are messed up from Graft vs. Host. Eye drops used to offer some relief here and still do offer some. She has been on so many different types, both prescription like different steroid drops, restasis drops, over-the-counter drops, many times a day, lesser times a day, etc. She has done cloth compresses and creams and ointments. She has had cornea surgery which worked giving some relief as it scraped off the damage but the damage came right back within a couple of weeks since the Graft vs. Host Disease is still active. So, that part of the eye problem is still ongoing and something Katia is used to dealing with, sad I know.

The other eye problem is light. Light causes a great deal of problems and pain for Katia. She wears sunglasses all the time. Unless she is sleeping, she is wearing sunglasses. She will often fall asleep with them on. She will have them on to take a bath until it is time for me to wash her hair. This issue has gotten worse and worse. She is very light sensitive. We blocked off one of the windows in our house last summer, the one in our living room so it would be more comfortable. This keeps out some of the natural light and that does offer some help to Katia. She is home most all the time due to her immune system. We have always tried to work around her while also trying to keep things as "normal" as possible.

Katia has seen eye specialist, cornea specialist, gone to specialized eye centers and really what everything boils down to is the Graft vs. Host Disease. It keeps coming back to that. Her body needs to accept the marrow. When this will fully happen is unknown. Until that happens, her medicines continue, her immune system will be compromised, she will have to be restricted in what she is able to do and places she can go, etc.

Her other issue that has been caused by the Graft vs. Host it seems is her mouth. Her mouth has had numerous lesions throughout the past few years on her cheeks and tongue and now has an ongoing burning issue and pain which is effecting her eating ability causing her to lose weight. In the past 2 months she has lost about 5 pounds. Katia typically loves to eat and right before this really got to be a problem, her esophagus was an issue. That seemed to be resolved with surgery and this has become a problem, her mouth.

Katia was 2 when she was diagnosed and really didn't know what was going on. She knew her parents loved her and just wanted her family with her and as long as we were there and we seemed okay, the world was good and everything would be okay.

She was 3 1/2 when she relapsed, she was scared and she knew she would lose her hair (she was okay with that), she knew she would get more medicines that would make her sick (she was not okay with all of that!), she knew she was going back into the hospital (didn't like that) and she knew her doctors would do everything to make her better (she loved her doctors and nurses!).

During her time of treatments when she was 3 1/2 and while we were looking for a bone marrow match, Katia turned 4. Not only did she turn 4, she was learning a LOT about what was going on and what the world of cancer meant and just so much more than a 4 year old should have to know. Her world still revolved around her family but she was growing much more compassionate for others and their pain.

She has remained that way and she struggles right now with the fact she too wants to feel better. She just wants to simply feel good especially her eyes, now her mouth. She doesn't so much complain as you can see it simply wears on her. She wants to be a kid, feel good, go places, do things.

Katia has been able to do very fun things along the way like meet the Disney Princesses at Disney, a day at Seaworld, meet Ronald McDonald!, meet some other great fighters of cancer, Disney on Ice, have her Playhouse Wish fulfilled and along the way we have all met some of the most incredible people doing some amazing research that have dedicated their lives to finding better treatments and cures to cancer and other blood related diseases.

Katia does understand, as do we, that it could be worse, much worse. She has remained in remission since transplant. She is 5 years out of transplant. She has remained on medications for a long time that could be extremely hard on her body's organs and yet she is still able to take them. Katia has osteoporosis and yet has not had any fractures. She has a great team of doctors and a great hospital! On days when she seems really down or just doesn't feel good, it isn't as easy to distract her or give her the speech "it could be worse". I don't really think that speech is so much mine to give really. But, I can see that she must kind of give it to herself or something close to it. All in all, she is still that innocent child that has the mind to focus on the more positive things at hand and not the focusing on every negative thing going wrong at one time. It isn't so much a lesson learned but a lesson often forgot with age as we leave childhood behind it seems. They depend on the fact they will feel better and just leave it at that. As a parent, I find it hard to just leave it at that but I do put my faith in God and I leave it to Him.

The other night I was making dinner (something I should do more often I suppose) and Katia was sitting at the counter and we were actually talking about attitudes because she had just snapped at me after being called down about snapping at the dog for not wanting to be attached at the hip with her. I told her being rude was no way to talk to anyone, not a person, a family member, the dog, anyone. Don't make it a habit. She hadn't been feeling good and had been having a generally bad day anyway so I had said all I was going to say on the matter and she just put her head down on the counter. I thought either the light from the kitchen was bothering her eyes, she was pouting, or crying. So I asked, "What are you doing?" No answer.... So I asked her again, "What are you doing?" She looks up with the calmest look and answers, "Praying."


Katia has always found peace in praying and turning to God and she has always felt comfort in God answering her prayers. She doesn't go to Him for only big things but for anything, no matter how "small" it may seem to someone else.

She later said she was praying about "everything" so that pretty well summed it up for me.

Faith like a child:)

Love, Tracy

A recent summary of Katia's Story

OUR LADYBUG KATIA

At the age of 2, our daughter Katia had started having swelling around and under her right eye. This was getting larger and significantly changing in appearance over a couple of months.

Following surgery to embolize the blood vessles (cut off the circulation to the tumor), Katia suddenly became very ill with fevers and just seemed out of energy. In the ER, they tested her blood and spinal fluid and admitted her telling us they were concerned for meningitis.

Two days later, we were told our little two year old had leukemia AML. She went through 5 months of intensive chemotherapy which both got her very ill but also brought her into remission which was our prayer.

For months we went for blood work which showed she remained in remission. She would get admitted for fevers or infections but she did stay cancer free.

However in August 2003, she became ill and the cancer was back, very suddenly and very aggressively. We were told she would need to again reach remission and only a bone marrow transplant would be her chance of a cure.

Our family was tested and nobody matched her so we looked to the registry. Katia is multi-cultural. We had been getting very educated since she had been diagnosed and knew the chances of finding a match were very slim so we worked with our local blood centers and the National Marrow Donor Program to put together Blood/Marrow Drives.

We went to the Media to share Katia's story and let people know there were many people in need of a match every day. A lot of people came forward.

For months, no matches were found and Katia remained in the hospital on treatment.

Near the end of December 2003, a match was found in a 5/6 cord blood. Katia was scheduled for transplant to take place in January 2004. She would be just turning 4 years old then.

However, a fungus turned up in her lungs which needed to clear up before transplant could take place. A delay. Katia under went a lobectomy to remove the area where the fungus was located and the transplant was rescheduled for February 5, 2004.

The time of transplant was so long awaited and anticipated and the process is yet not much more than what seems like a blood transfusion it seems but the overall feeling is much like watching your baby be born again. It is seeing them have a new chance at life and the wonderful gift of someone donating that cord or their marrow.

Katia had issues pretty quickly with rejection of her transplant so she was put on antirejection medications.

After 248 days in the hospital, she was allowed to leave the hospital and go to the Ronald McDonald House behind the hospital!! It was our practice area before being released to go home home.

Throughout all of this I journaled through an online journal and everyone who read that was just as happy as we were that we were finally released:) Katia would go back and forth to clinic everyday to get her blood counts checked and it was a good thing because some days her antirejection medicine counts were totally off and could have become dangerously unlevel had not been checked. She was still in need of blood and platelet infusions at this time as well daily at times or every other day to three days so checking often was much needed. However, Katia was very happy to be outdoors and being free. After 336 days of being away from home. We returned home!! That was when Katia was 4 years old.

Katia is now 9 years old, 5 years post transplant. She has rejection issues still, mainly on her skin and with her eyes. Her corneas have quite a bit of "wear" on them which cause a lot of sensitivity to light. Katia's growth has been very stunted since her relapse at age 3. She is 3'3". She received quite a lot of radiation to her spine and brain as well as the orbit of her eye. She has been on steroids since early 2004 for rejection issues. She has osteoporosis due to treatments and steroids. She is slowly being weaned from the steroids and at this time is on the lowest dose ever and her rejection is showing the best progress ever. She has a Home Bound school teacher as she has a very surpressed immune system still.

Katia is a very caring and compassionate 9 year old. She loves her family, adores her doctors, her teacher and like all kids her age, she loves to play. She has a little 2 year old puppy, Fozzy that makes her very happy. Katia has always been known as, "Ladybug Katia" and she says when she grows up she was to be a Veterinarian.

Katia has been a symbol of hope to many, but to me (her Mom), she is my HERO!

Tracy Solomon (Mom!)

"Each day has a moment to remember forever. If we are lucky, we'll be watching and realize the moment." Tracy L. Solomon

Saving lives!! Be the Match Marrowthon June 8-22

Katia is here today after a very long search for a marrow match. Many people do not have the time for searching out their match or the people to help them search. You may be someone's perfect match. You may already be on the registry. Thank you. You may be unable to register due to age, health reasons or something else. Please help us spread the word. From June 8-22, registration is free either in person or online by ordering a kit. More can be found out at www.bethematch.org.

Thank you so much!

Please pass this on to everyone you know:)

Tracy

Update on Katia (endocronology appointment and POOP)

The endocronology appointment went well. We went over a lot of things with the doctor and he will be getting a lot of information regarding Katia's transplant, the radiation used, her medications used prior and post transplant and see what can possibly be done. He went over our family histories and of course looked at our heights:)

He explained the risks of growth hormones and will have to look at all the gathered information to know the hopes of growth possibilites.

All in all we were very impressed. Our next appointment with him is in 3 months or so.

Between now and then we have labs to do and some other tests. And depending on those results, he may order more.

So, we don't really know what can be done but we feel confident he is the right person looking into what can be done.



On to the "How is Katia?"

Katia is having quite a few tummy issues right now with cramps and nausea so we handed some "stool" yesterday to see if anything grows. Her little munchy appetite hasn't been too great lately due to nausea. So, hopefully they can find some answers in her poopies.

Until later....

Lots of love, Tracy

Latest Katia Update 5/2

May 2, 2009

Counts from 4/29

WBC 4.19
HGB 14.0
PLT 386
FK506 5.3
Creatinine 0.31

Infusion IVIG and Pentamindine

DEXA Scan Results from April 2009

Whole Body -3.5
Lumber Spine -2.7
Left Hip -2.9


So, there are the numbers.... basically the labs look pretty good. The Dexa Scan results do not. Anything more <-2.5 is osteoporosis and we had hoped for some improvements as we have gone down some on the steroids and Katia is bit more active. She isn't able to run around but she is more up and down around the house. Her "Whole body" number went all the way from -3.1 to -3.5 so that wasn't good.

She has had a cold that is really bugging her for the last few weeks and has been having issues with nausea and a sore stomach so she isn't wanting to eat... She kind of goes through these times it seems.

On a new note, she is going to see a Pediatric Endocronolgist this Monday so we will see what they say as far as any growth hormones and a few other questions we have. Katia has been the same size for years which in many ways hasn't been an issue due to so many other concerns for us nor Katia. It is actually kind of a concern for Katia if she grows. I think she is used to being the size she is.

Her eyes have really been giving her grief these days as the Florida sun does its thing... you know, coming up in the morning and shining. So, she has been pretty attached to her sunglasses, THE sunglasses. I had to work on those the other day. They are really quite a special pair because they seem to fit her perfectly and are really dark which seem to be hard to find. She gets a lot of compliments on them and they were just a pair I picked up quite a long time ago, didn't pay much for them as I have a bad habit for leaving things laying some place and walking away.

So, that is kind of what is going on here:)

I will update (hopefully) after the endocrology appointment. If I forget, someone on Facebook remind me please... or someone send me an email, "Tracy, you are forgetting something!"

I tell you, the closer I get to 40 (just a few months now), the more I need reminders and then reminders to check the reminders...

Lots of love, Tracy

Long overdue update....

Hello there. So it has been a bit since I have updated...

Katia has been a bit sick on and off with a cold and sore throat that won't seem to go away but she hasn't had any fevers which is a good thing. She is just really irritated at being sick... I feel bad for her. She had her testing with school which she got through and had a reasonably good attitude about no matter how difficult it was for her. She does stress over things quite a bit when she feels she isn't doing well at something. But, she carried through and completed the tests.

As for me, I am not really one to share many details for a few reasons but a good reason is because I don't like to sound like I am whining:) A lot of things tend to be dragging out and a lot of that is due to I have to space out appointments for the reasons of Katia's appointments as well as copays. At the same time, I get stressed to the idea of some of the same issues having had gone on for quite a long time and going around in circles. I also know millions of people go through the same thing which kind of leads me to the conclusion a lot of times to just let things be.

I have let my set upcoming appointments just wait and not move them up. For example, my neurologist appointment. He may not so much appreciate that but, I am sure he will understand it once I explain myself. I had an abdominal/pelvic CT done shortly before my last update but hadn't had the results back yet. I have had abdominal and pelvic pains for years which my OBGYN and GP and urologist are all aware of. Since the kidney stones have become an issue, that is where the focus has been but the last few x-rays for stones has shown them to still be there but not changing in size or moving from the kidneys. So, I had a scan done. I hadn't had a scan done for about 4 months. The scan showed the stones to be stable but it showed an ovarian cyst. So, right now we are going to keep an eye on that. I also have a tilted uterus which has caused me "discomfort" through the years but not pain. But, as of recent, something has just become more and more painful on a consistent basis. I already check in with my OBGYN and a surgeon concerning my breast every 6 months concerning follow up on my breast due to concerns over mammogram and MRI results. So, I feel like we keep a pretty close eye on that. I have yet to follow up with my OBGYN on this Cyst as I wanted to let 2 cycles pass to get another scan done right after that. So, that is where that stands and the kidney stones stand. I do feel the stones but there have been no flare ups which is a good thing. I have to say the worse thing was passing one. I really don't ever want to do that again. The big one that had hung around forever, I think I had gotten used to that. I am really glad I didn't know how big it was until those last couple of days when they were about to remove it and I really didn't know about kidney stones then. The saying "Ignorance is bliss", I believe that in that case... Now knowing about stones, 1.5 cm. OUCH!! The ones I have now are in the "mm" ranges.

My other issue right now that is very very bothersome is memory issues. For me, that is a big thing as it has been dragging on for some time and something I want to discuss with with the neurologist. I have known for sometime some of the seizures I had seemed to cause a few issues and as I have been on medicines I have slowly noticed a little bit here and there but recently, I have had more and more and it is getting quite concerning. More than concerning, it is upsetting to me because I rely a lot on my mind and my memory both long term and short term. So, hopefully we can kind of figure that out. I really can't change my medication because out of all the ones we did try the ones I am on now is the combination and doses that worked so.... I don't know. We will see if he has any ideas.

What else?? I am trying to catch up with some details. Okay. One last concern is my vision has changed quite a bit over the past year and I changed my glasses in January but it has changed a bit since then so I am going to get rechecked. I may changed to contacts if I can also. Not sure about that. I tried contacts before but I know they have changed a bit since then. I am nearing my 40th birthday so my vision changes may just be due to that? But, it is quite a bit in a short time. I go yearly and the optometrist was quite suprised. I am not sure what he will say seeing me back in 5 months? Anway, I think that kind of catches things up.

Katia has and appointment on Monday for a DEXA Scan. She has had quite a few different areas of bone pain recently so hopefully her results aren't worse. I am actually hoping to see some improvements that her bones will show strenthening. She is more active which strengthens your bones. She still hasn't grown at all so her bones haven't been stretched. So, we will see. Her regular appointment is after that so if her throat is still sore or she is still stuffed up, I am sure they will be swabbing her throat or something.

She is very much looking forward to Easter:)

Have a blessed Easter.

Love, Tracy

It's Just Teeth Pulling... and a little Fashion.

March 10, 2009 9:00 AM


Time for an update:)


Katia's throat has improved and although some things are still out such as some pills, Katia is able to take her codeine pills (which are small) and she is able to EAT!!! She still chews her food up quite a bit and for a while BUT there has been absolutely no choking episodes!!! That is wonderful and we are all so happy and thrilled. Katia is just happy to be able to eat regular foods again. So, she has had her McDonalds, KFC and Subway again. She of course is still a big fan of mashed potatoes though as well:)

So we will leave well enough alone and stick to her liquid medicines and the fact that Katia can enjoy her foods.

Hopefully what was done will keep her esophagus open. Still no real idea on what caused this.

The other thing that has gone on is Katia had 2 teeth pulled yesterday from the bottom, These just would never loosen up. These are the 3rd and 4th baby teeth she has now lost. When they were pulled out, they still had the long roots on them so we were able to see why they weren't going anywhere. We also found out she will be right back to have 2 more pulled out on the top right next to her two top teeth. She of course handled this like a champ and had a Frosty on the way home. She was planning around the Tooth Fairy's visit and figuring out what she could eat when she was able to eat. She did end up with some stitches and some packing due to the roots and some bleeding but this morning she is just fine.

Tonight is the Fashion Funds the Cure Modeling Show with the Pediatric Cancer Foundation at Saks of Fifth Avenue and Katia is really looking forward to going. She will be in the Alumni walk which is with the group of girls that closes the show. She always likes getting her makeup and nails done:) It is a really great evening and a lot of clapping when each girl has their moment on the runway. SAKS completely shuts down for this event and the store is just packed for this fundraiser. It is sad to see new girls because it means new diagnosed girls, it is comforting to see returning girls because we are all in this fight together and we know how important each day, month and year is and the hope for new treatments and a cure is. It is heartbreaking to know some of the girls who have once participated are no longer with us and our hearts are with these girls and thier families and part of the show is in memory/honor of them. Not just the previous girls but many patients who are no longer with us. Cancer is such a horrible disease and the fight to beat it is a daily fight for so many. When someone passes, their family is still in that fight, their loved one is never forgotten. Their heart will go on, their cancer died.

Love, Tracy

"The greatest of life's joys are made up of the moments we aren't looking for but the ones that find us." Tracy L. Solomon

Update on Katia's Procedure Feb 27 and....

Hi there:)

Okay, so how is Ms. Katia today?????

Well, her throat is feeling better:)

Yesterday it was feeling sore and bumpy and she wasn't very happy. Today she had some Mac and Cheese (yeh, she has been missing that stuff a LOT!)

And she looked quite happy eating it.

When she was done she told me that she had 3 noodles in her mouth at once. She still chews and chews and chews, but that is a good habit anyway. But, she was so happy she could eat it and not worry about choking. So, not only was she not choking but she wasn't even worried about choking. She trust her throat.

She says she isn't ready for anything crunch yet but she has a lot of stuff she has been missing. She had some chocolate cake last night. She doesn't have a huge appetite but she likes food so she likes to be able to eat what she wants to eat. She has missed McDonalds and used to love the drive through on the way back from clinic as well as KFC. That used to be a big thing after a long day. She has been pretty stressed for a long time.

What she had done will hopefully do the trick (I think it will). It isn't a permanent fix but there isn't anything that says it won't last. We still don't know what caused the issue so there is nothing saying it will or it won't happen again. We just hope it won't. Right now, the little Ladybug is pretty happy and it's today that counts:)


And.... my appointment today

So, I had a Pulmonology Appointment today.

I spoke with the pulmonologist who went over the notes from the ENT and we did a PFT (Pulmonary Function Test) which I didn't do well on. I used my inhaler which didn't get me to do any better so he feels I have asthma but he changed me over to Advair and wants me to get a chest x-ray. So, that is the next thing I will do. He said it will take a while for the Advair to really start helping so to give it a month or two. During the PFT, you can watch the little animations while you try to blow in and make the hot air balloon go up and basically that balloon wasn't going to get anyway so I knew I wasn't doing too good. Then they put it on a toaster that was supposed to fly up in the air and grab the toast. That didn't make it any easier. I was beginning to feel like a 5 year old. But, at least I wasn't doing bad in math or something. Hopefully this helps. I have gotten a little used to feeling short of breath but the coughing and choking episodes is what is really concerning and they all understand that and feel this should clear that up as well. Hopefully I can get the x-ray out of the way next week some time.

Thanks for your prayers:)

Love, Tracy

Katia's Procedure Update

Katia's procedure went well. They were able to do but the upper endoscopy did show quite a bit of tightening of her esophagus in one area so they were able to dialate that area. We aren't really sure what that will accomplish yet due to soreness and swelling which should subside by Saturday or so. Katia is still quite sore this morning and tired. She didn't sleep the night before as she was anxious knowing they were going to do "something" to her throat. She normally isn't anxious before procedures because she knows she will be asleep even though she may wake up sore. Her throat is her area that has been giving her issues. She is VERY hopefully this will allow to eat normal again so she was looking forward to the procedure at the same time.

Thank you for your prayers so much!

She did get down some of a toddler meal last night and some cold drinks. She was going to try an Italian Ice.

If need be here throat can be dialated some more BUT we are hopeful this will be enough:)

Tracy

Update from Katia's CB Site and more...

February 20, 2009

UPDATE FEB. 22 *KATIA'S APPT. HAS BEEN MOVED TO WEDNESDAY


Wow, am I getting late at updating.

First the counts from the 9th.

2/9/09

WBC 2.68
HGB 14.1
PLT 375
Creatinine 0.33
IGG 590

Really, those are good. WBC is low but the rest look good. As far as the results from the swallow tests that were done that day, it did show narrowing or obstruction of some type in the esophagus. She has an appointment for Monday with a GI on Monday for an upper endoscopy which will look in there and see what they find. If possible, they can maybe do something corrective while they are looking as far as dilating that area or if there is something there that needs to be biopsied or sampled, then they will do that. If not anything else, then they will just get another view. Hopefully, the problem is fixable from there because it is getting more and more bothersome to Katia. She just doesn't like to complain really. She has done her best to work around the situation but really, she loves food. Surprisingly she hasn't lost weight. That is a good thing.

So, Monday she will have that done. I don't know the time yet. We just found out the day today. She'll also have her regular clinic visit and Pentamindine infusion on that day as well. You know, that same thing I am just know posting the counts from the last one?? Aside from that, Katia has been having some up days and down days. She has had some long nights of not sleeping and just staying up somewhat due to her eyes but also she is just a bit stir crazy sometimes (well more than sometimes). She is nine now. That is a big age. She has a few favorite things she likes to do and most really have to do with what her counts are. She is a girl and she is 9 so she likes to shop... Her counts don't agree with that. We have figured out a few safe ways to that at certain times but also we have to work that in with our own abilities. She also likes to get Fozzy out. We all do!!! He is family:) He is not very well behaved though. We took him to the park and have been working with him a bit on heel, sit and stay. Well to be fair I don't work with him as often as I should. Anway back to his faults... So, we take him off the leash for a couple of seconds and what does he do???? He takes off like a jack rabbit after a bird!! This field is huge! Around the house, this dog is a pampered lap dog and quiet. He plays when he is played with, rarely barks and never ever acts like he knows he is a dog. Suddenly he is acting like a hunting hound and we all darted after him. Well, Katia was swinging on a swing totally oblivious to what was going on. So, the lesson learned is Fozzy is waiting for a moment to escape and we are totally out of shape. There is also a leash law for a reason. Lack of self-discipline in the K9 community! (Sorry Fozzy but you and your leash are buddies)

So, that is a catch up on events:)

We have the upcoming Fashion Funds the Cure Modeling Show at Saks of Fifth Avenue. I think it is March 10th. Katia will be with the Alumni Girls this year. She is really looking forward to it. She loves the makeup people and seeing the other girls and people. The past years have been really fun. No matter how she is feeling, she is eager to go. Last year she was going through quite a lot of pain before and during the Fashion Show and after but the event is such a nice thing for everyone involved and is really for such a great cause. This year, Katia's GVH has stayed much more stable and has improved on some areas of her body so that is a great plus. We have weaned some medicines and are going down on others. Being homebound, this event is a great thing to look forward to. Plus, it is at Saks so it is a beautiful set up! The walk down the runway is always fun and everyone makes the girls feel very special and gorgeous when they cheer and clap (of course the parents feel very good as well).

The event is also remembers those who are no longer with us and the search for a cure can never get here to quickly. Everyday people are diagnosed and everyday families are facing these tragedies. For us, we live each day with a miracle in Katia. It is both humbling and at the same time something that reminds us each day to join in helping any way we can. If you haven't dropped by the Katia Solomon Foundation Site lately, you can see what has been going on recently. A new program started up which is under Current events. Hopefully we can keep it going as it has been something that had a great response and has definitely filled needs for many people. It definitely can continue to do so.

Have a really good weekend. We are planning on a quiet weekend (those are the best kind) and hopefully Monday brings some good results. Oh, it has been great having some of you drop over on Facebook:)

Love, Tracy



About me....

My pulmonogist appointment is this coming Friday. It is primarily for a consult. The ENT lined up the appointment so that was quick:)

Follow Up Appt.

So, I had my followup appointment on my CT for my tonsils and the CT all looked good which is good news. It doesn't really clarify much but it does let me know my tonsils and neck are fine. Good news is good news:) The tonsil being enlarged? Well, that will just be followed up and see that it doesn't look different or change in a negative way. I will continue to follow up with the same ENT doctor.

The choking issue? Well, one of the first times this happened was in my regular doctor's office but at the time I was sick and it seemed to be due to having a cough. Although I ended up needing a breathing treatment to get over the cough and finally being able to breath, still I pretty much looked at it just being related to being sick. It was really scary and over the next few weeks, my lungs were not the same and I needed an inhaler. At that time, I did a PFT test which, if I remember correctly was okay. It just seemed that during cold/flu time, I didn't need to get sick. But who does? So, I didn't have any problems again until maybe this past June or July. I was home with the Tatiana and Katia and for no reason at all, I just started choking. I wasn't eating or drinking, talking or anything. We were watching TV. It lasted for nearly 10 minutes. I couldn't talk but I could breathe. With everything our family has been through, panic doesn't set in as quick as it would normally but nerves do. I signaled to the girls to assure them I could breathe, Tatiana got my inhaler but I couldn't use it yet while I was coughing (I don't like to say choking since I could breathe-it is just nonstop coughing that you can't catch your breath). Finally, it started slowing down and I used the inhaler and after about 10 more minutes I could talk somewhat. That pretty well left me stunned because I had no idea what brought that on so I didn't know how to prevent it or even how to explain it but I figured it was just something that wouldn't happen again...

I was wrong. It happened again about a month later, then about 3 weeks after that. At this time, I had a neurologist appointment so I brought it up to him. I asked if it could be seizure related or due to any medicines. The last time it happened, I had felt like I knew it was about to happen because I had a weird feeling in my throat just a second or so before. But, I hadn't had any seizures for a few months and it didn't seem seizure related. The next time it happened was in the shower. The steam seemed to cause a problem. I never like steam so I wouldn't know if it would typically cause a problem but it did and it caused a big problem! Everytime, these happen, it takes days for me to feel normal again. It really bothers my throat, my neck and my lungs. Since it started, it happens closer and closer together now.

When the tonsil suddenly enlarged, my first thought was maybe something with my tonsils has been the cause of all of this choking and coughing or at least an ENT can figure this out.

Well, my right tonsil just seems to have become larger than my left one but it seems healthy.

So, I have been referred to see a Pulmonogist now. I am not sure when the appointment will be. I do think it is a good idea, a very good idea actually since I have to use the inhaler... it makes plenty of sense.

Onto, Katia news. She had her swallow tests on Monday (do we sound like twins or what??) and the results should be in but I don't have them yet. I will put in a call tomorrow. I really hope they have answers because she is VERY eager to have some type of answers toward getting her better. Every mealtime, she ask. I am surprised she hasn't dialed the doctor's number herself today. So, I will update here and on her CB site when I know.


She is sitting here watching "Chicken Little" right now talking about my nails clicking on the keyboard:)

Love, Tracy