Holidays

We have been getting ready for Christmas. Iva has started a new chemo regiment. A kinder, gentler chemo.

What does mean? Well, mainly that the meaner chemo wasn't working.

Big Day

So tomorrow is the day. Iva goes on her cruise. They leave out of Ft. Lauderdale and over the 7 days, they stop in Grand Turk, St. Thomas, St. Barths, and Half Moon Cay. She is packing as I write this. So exciting! Thanks again, Jazz Cruises! You guys rock!

Cruise

As I posted a while back, The Jazz Cruise donated Iva a cabin on their Caribbean cruise in November. She had her PICC line removed (again) today since she is more than likely done with chemotherapy for a while. When she gets back from the cruise she will undergo scans and if we can pay MD Anderson the $13,000 we owe them, she will get to see the the specialist to see what is to be done next.

So in the meantime, she will be leaving for the cruise this Sunday. She will be gone for 7 days. Since she no longer has her PICC line, she will get to swim, showers will be infinitely easier, and there will be one less route for an infection. All around, very good stuff!

The girls went trick or treating on Halloween and stopped for a photo op with teta Iva and nani.

Departure

Mimi has left us to go back to Skopje for the month. Hopefully, she will be successful in her mission of getting some much needed financial assistance from the Macedonian government.

Pray for her safe passage and her success!

Anniversary

It has just occurred to me that it was about one year ago now that Iva first began to experience her symptoms. For a whole year now she has been sick. When she looks back over this last year, she sees nothing but loss. I can't say I would feel differently, if I were her. But since I am not, I have a slightly different perspective. I see a woman who has made it through some pretty insurmontable obstacles. I see triumph. I see accomplishment. Just in her being here still. Unfortunately, my perspective does not matter. It only matters what Iva feels in her heart. And in her heart she is still lost. She is still mourning. She is still deeply deeply sad.

What good does it do to have life if you can't live it under your own terms? That is the real issue. What good does all her past experiences do her when she can do nothing with them? For example, her degrees in organic farming. Due to her physical limitations there is no way she can be out on a farm using her skills and knowledge. She can't even teach because it also requires hands on research.

She can't just pick up and go places, carefree and spontaneously. She can't stand the way she looks. She doesn't see that her eyes and smile are still infectious and beautiful. She only sees what is not. She only sees her limitations. It is easy when you are dealing with them day in and day out to have what you can't do be all that you can see. I reread some of my earlier posts and was struck by how incredible it was when she did little things, like lifting her feet off the floor and onto the couch. How we quietly celebrated those small victories! Now she can walk all over without crutches. She can pretty much eat anything. The reasons she spends so much time in bed these days are not so much for physical reasons.

Our Iva is badly battered and bruised. I was not aware of it. I went to work every day. I came home and took care of the usual chores. I cared for the kids. We stressed over money. We stressed over being to pay for her needs. We became consumed by these things. We were going about our new routines. It is easy once you settle into a routine to not see things that are always there. You become acclimated to their shining brilliance, so much so that you no longer notice them. And that is what has happened with Iva. She is always here now, doing these things she has been doing for months now, and I failed to see her.

Her heart is aching and I don't know how to help. It is pure tragedy.

Looking to the future

Well this week was suppose to be another chemo week. But Iva successfully dodged it. She has not been wanting to take this last round ever since it was first proposed. Back in July when the MD Anderson doctor suggested another 3 rounds of chemo, she immediately began the bargaining process. She has adamantly insisted that she could only fathom doing 2 more rounds. She has now completed those 2 rounds.

And along comes the Jazz Cruise. She leaves for the cruise on November 8th--much too soon to take a round of chemo now. She would more than likely be at her worst during the cruise if she were to take chemo now, so her oncologist has agreed to hold off for now. When she comes back she will have scans and go in to see the MD Anderson sarcoma specialist. If we can pay them. We owe them $13,000. They have sent Iva to a collection agency, I am told. HA! What are they going to do? Ruin her credit? Good luck with that!

Anyway, on Sunday Mimi, Iva's mother, is leaving to go back to Macedonia. She is on a mission to squeeze some money out of the Macedonian Government. They have a Medical Fund, which will pay for your treatment in a foreign country if the treatment is not available in Macedonia. Well, they denied Iva's claim because they already had paid for care in Austria and the Austrian doctors would not give us a statement saying it was recommended Iva came to America. Damn doctor egos. They told Iva that her records showed her coming to the US was her own personal choice. Yes, it was. It was a choice to live! It was a choice to be close to family and a support system. It was a choice to come to the best sarcoma clinic in the world. I mean, really! How can they say that choosing one's life isn't medically necessary? Ridiculous. So now Mimi is going there to move the appeal along. Beg, bribe, whatever it takes. Iva may be done with chemo for now, but she has expenses that are unpaid. She will be having more expenses incurred with additional scans next month, possible surgery to remove the lung tumor, possible radiation to treat the spine tumor. . .on and on it goes.

In the midst of all of this, Iva is looking to the future. She is searching for herself. She is searching for her confidence. She is searching to replace some of what she has lost. She isn't quite sure where to find it, but it is great to see her trying. She has applied to a handful of jobs. She is considering going back to school. She is planning and thinking. I desperately hope she finds what she needs.

Doing without

Iva has had a headache for two days. It is the headache that comes with anemia. She has been sleeping a lot and tires easily, as you would expect when you have no blood count. It would be lovely to take her to get the medications to boost her red and white blood cell production, but those things cost a ton. And there are choices we have to make right now between medication to combat the ill effects of chemo and the chemo medications themselves. And this "choice" we make based on money. So she is going without.

Money is the dictator of our life right now. It decides what medicine Iva can take, which doctors she can she, and what other therapies she will undergo. We have brought her all this way. Submitted her to all these treatments. And now what? It feels as if we are somehow failing her.

The herbal medication she has been taking in between rounds of chemo cost $3,000-$4,000. She has been going without some of these as well.

There are places Iva would like to go and things she would like to do. And we know that sometimes she does not choose these things because of money.

It is a tragedy to not be able to afford the medicine that can keep one comfortable in life. It is even more tragic to not be able to afford the medicine that can keep one alive. Then there is the tragedy of not being able to live while you still can.

Another round

Iva is undergoing another round (her fourth) of chemotherapy. She will finish on Tuesday. So far she has been feeling tired and just plain yucky.

She told me today that she does not want to take the last round of chemo. She was suppose to take 6 rounds and then see about surgery and/or radiation. She doesn't see the point in taking that last round, and really just wants to not do it. Chemo is harder on her than any of us understand. She doesn't believe in it. She is enduring it just to please her family. I really don't think she believes it is helping her at all. There is something about it that really upsets her. She doesn't confide in me that much, but I get the sense that she is not coping with this new life all that well. I mean, really, it is a lot for anyone to handle.

Before she came here, I had only met Iva twice and had spent only a few days with her. Not enough to know her. So this whole time I have been thinking how great she is handling this whole thing, and now I have seen that I was mistaken. She doesn't want to go places because of the physical changes she has undergone. She has no confidence in this new body of hers. She doesn't feel like a person, I don't think, and definitely does not feel like a woman any longer. She has lost a whole lot of herself and the bits that are left she does not feel good about. It is tragic. So terribly tragic, because she doesn't seem to have the strength to keep on fighting. I worry for her. I worry for her life. I worry for her heart. I just hope she finds some value in what she has left. Enough at least to endure the fight ahead.

Checking

Are you out there?

We could use some support.

Delay

Iva was suppose to start chemotherapy, but her blood levels were not where they needed to be. Maybe tomorrow.

Pandemic

The flu has struck. Iva has been sick the last couple of days. She went to the doctor yesterday and today. Looks like it isn't serious, just terribly uncomfortable. Aches, coughs, etc. Chemo is scheduled to start on Monday again.


Now comes the part we have been worried about for weeks. Iva is running out of donated monies. We don't know how her chemo is going to be paid for. We don't know how we will pay for the medicine she will need after the 5 days of chemo is done. Or the countless other medical expenses she incurs just being here. Being Iva is not cheap. It is not easy. She requires medical appliances. She requires medical supplies. PICC line changing kits. Urostomy bags. And on and on. And none of it is cheap.

What we do know is that there are people out there willing to help. We have seen it. But people forget. Causes come and go like fashion. Please don't let Iva's life be a fad. Don't let it be something you were passionate about this summer, but tossed aside in the fall. We have a Facebook group that has over 13,000 members. If every one of those people donated just $20 . . . and then told 5 people who each who donated $20 . . . It isn't too much really. It is a drop in the bucket compared to what Iva has given and has to give every day just to keep living.

I mean, really. So many people in her position would be bitter. They would be angry. They would be in despair. But she isn't. For those of you who have had the privilege of knowing Iva personally, you know that her spirit shines bright. What frustrates us so much is that no matter how many words we write, or how many emails we send, or how many calls we make, we can never communicate how worthy Iva is of your time and money. She is the product we try to sell every day. And our poor feeble attempts fall short time and again. But we can't stop. It's all we know to do.

Flu

The flu has struck the Milenkovic home. Just praying Iva does not get it. This is a particularly wicked strain.

Bikers Ball and such

So some friends of ours, Matt and Dayna, who also happen to be great neighbors, talented photographers, bikers, and all-around fantastic people, donated tickets so Iva could attend their annual fundraising Bikers Ball. Thanks, Deacons of Deadwood!

Iva was a bit under the weather. She had a low grade fever and was a bit chilled all night. The next couple of days were no better, and yesterday she was almost hospitalized. Thanks to not having insurance, the doctor decided her fever was 1/2 a degree shy of requiring hospitalization, and today, she felt so much better she was out shopping for groceries and other necessities. What a difference a day makes!

Last Tuesday she finished up a round of chemo and these next few days Iva will be occupied with very practical matters. Getting a French visa for the cruise, applying for an extension on her American visa, etc.

Cliffs Notes

Apparantly I failed to make myself clear. Too many thoughts, too many words.

So the Reader's Digest version of the previous update:

Iva' s tumor shrank.

She starts chemotherapy again today.

The End.

PICC Line

PICC line successfully placed today. Iva's arm hurts more this time than the previous two, so we'll have to watch it carefully the next couple of days. More chemo tomorrow.

Anyone who can, please consider making a donation today. We have a lot of medical bills that need to be paid and upcoming charges that need to be covered. Today's procedure was about $3,000. Each day of chemo costs $1,500 for the next 5 days. Any and all help is greatly appreciated. Thank-you all for the support!

Visit us at Save Iva.

Results

Last night was the benefit concert for Iva. Ivana Ristova and Krume Andreevski played really amazing pieces by Ravel, Liszt, and Chopin. That was amazing enough--and then they treated us all to some improvised traditional Macedonian folk songs.

So the turnout wasn't quite the raging success we were hoping for, but given our lack of experience and time in organizing this event, we are counting it as a success. And at least we broke even.

The night before the concert we picked Ivana up at the airport and she spent time with our family.


















This morning Iva, Mimi, and Antonio got up early to head out to the airport. A family friend has sponsored a weekend visit to South Padre Island.

Next week Iva starts chemotherapy again. Which is big news, because the last update I posted was that the tumor had grown, which meant she was not responding to the chemotherapy. We went into MD Anderson last week expecting to discuss other treatment options. That was Wednesday. The day before this appointment, we had Iva get another CT scan of the lungs.

From the very beginning of her illness Iva has been stumping the doctors. When her symptoms first began this past November, Iva was sent for scans of the growth that was forming in her rectum. The doctors did not know what it was, and therefore, did not want to treat her.

She again stumped the doctors in Austria who had never seen a tumor behave as hers did. Even after a full cycle of chemotherapy, her tumor grew so rapidly, that the scans showed daily progression in size.

And now Iva has stumped the doctors here in the U.S. Her lung metastasis was 1 cm in size in the May 2009 scans. Then she had 2 cycles of chemotherapy. When she had her CT scan in July, initially the radiologist at Clear Lake Regional Medical Center read the scans and said the tumor was necrotic (dead) and cystic looking. They weren't even entirely sure that the growth was ever a tumor. So we were happy, of course, to get this great news. We gave the July scans to MD Anderson, expecting they would be equally optimistic. Iva started another cycle of chemo while waiting to hear from the MD Anderson doctors.

Then came the news. Not only was the growth definitely a tumor, it had grown! Since there was progression of the tumor, there was no need for any additional chemotherapy. Iva's PICC line was removed and we went to go talk to MD Anderson about clinical trials, surgical options, etc. We took the new scans with us.

When we first got there, we of course had to deal with the usual money issues. The business office wanted to know what we were going to do about the outstanding balance of $26,000 we still owed them for Iva's hospitalization back in May. Zoran offered them half, which was almost all the money Iva has left from donations in her medical fund. They settled for this amount and let us see the doctor.

So Dr. Ludwig comes in and starts talking to Iva about what has happened since he last saw her in May. We asked him if he had seen the scans from the day before that we brought with us. He hadn't looked at them, so he left to do so. He came back 15 minutes or so later.

He tried to show us the pictures, but his computer wouldn't let him open our disc, so he showed us the ones from May and July. Side by side you could completely see that there was noticeable growth in the lung tumor. No question. It was about 2 cm and dense looking. How Clear Lake Regional's radiologist couldn't tell is a mystery.

So then he tells us the amazing part--the new scans show the tumor has reduced back down to its former size. It was about 1 cm again as it was in May! He told us that he had no medical explanation for this. He had no explanation for why chemo after 2 cycles would not work and then suddenly would work after one more cycle.

Right after Iva found out the chemo wasn't working, she ordered a bunch of herbal remedies online. She had been taking these for only one week when the new scans were taken. Dr. Ludwig said that it was doubtful the reduction in tumor size could be attributed to the herbs, since even the most effective chemotherapies take about 2 weeks to cause any noticeable tumor reduction.

He consulted with his radiologist and on Tuesday, he told us the radiologist agreed the tumor was definitely smaller again. And still he had no medical explanation. "Whatever you are doing is working," he said. So after this weekend, Iva will again get a PICC line and begin chemotherapy. She is to have 3 more cycles, for a total of 6, and then we will have scans taken to reassess things. Depending on what is shown in those scans, she could have surgery, radiation to the spine tumor, or nothing.

So now we just have to figure out how we are going to pay for everything. We still owe MD Anderson about $13,000. We owe Clear Lake Regional approximately $15,ooo. Then there are other smaller bills for another few thousand dollars. Right now we are tapped out and aren't quite sure how we will pay for everything Iva needs next week, but we know that we have already received more than we could have ever expected. Including this latest miracle.

All we can do now is rejoice in the gift of Iva's continued healing. We can be grateful that she is still here with us, that she is getting to lie on the beach right now as I write this. That we have met so many incredible people during this journey, including Ivana and Krume, all of who continue to amaze us with their ability to give of themselves, their talents, and their hearts.

Tonight!

Tonight is the concert--finally! 88.7 KUHF interviewed Zoran, Ivana, and Krume on their program, The Front Row, yesterday. If you missed the live broadcast, you can hear it here.

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door. You can also prepay by credit card through PayPal at www.saveiva.org.

Please note that the venue does not have a credit card machine. We will be trying to do online transactions through PayPal at the door, but do not know yet if we will have Internet access there. If you can, bring cash or a check.

Tomorrow

Tomorrow we go to MD Anderson to meet with the sarcoma specialist. He will be telling us what Iva's options are. Sometimes choice isn't as great as it is cracked up to be. Like what if all options suck equally? What if one choice excludes you later from switching to the other option? What if you just don't know what to choose?

Hoping for great choices that don't complicate or confuse. . .

Benefit Concert

Just a reminder to everyone who can attend:

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door. You can also contact us directly and get prepaid vouchers for tickets.

Waiting Again

Since last Wednesday when we learned the chemotherapy wasn't working, we have been discussing what should be done. The first notion, obviously, was the clinical trial as I already wrote about. But what about surgery? Iva's oncologist that has been administering her chemotherapy told us that in order to form a metastasis, the tumor cells traveled through the blood, thereby infecting her blood with cancer cells. Well if the tumor wasn't responding to the chemo, neither are these rampant tumor cells that they can't see. In other types of cancer they can check the blood for tumor markers to help determine if treatment is working, how much these cancer cells are present in the blood, etc. Unfortunately, for sarcoma there is no such marker test yet. So when Iva asked her about removing the lung tumor, Dr. Kodali indicated that usually they would not do this since it wasn't responding to treatment. Maybe in their experience it doesn't prolong life, maybe the risks are greater than the benefits in most cases, whatever. But this is not the usual case. Iva's cancer has always been very aggressive. Her primary tumor rapidly grew--so rapidly it almost killed her. By the time they finally began her treatment in Austria this past winter, the tumor had begun to grow so large it began obstructing her other organs. The doctors there were stumped. They scratched their heads and proclaimed they had never seen anything like it. Well if that is the case, then this is not the usual case and the usual approach not only won't work, but should be avoided! Right?

So we were trying to get into to see the sarcoma specialist at MD Anderson. The only option anyone was discussing was the clinical trial. So what about surgery? The first appointment they offered us was at least 3 weeks away. Three weeks without treatment of a tumor that is known to be growing even on chemo seemed to us, especially to Iva, to be too long. It was just as in Austria--she felt her tumor growing, told the doctors there, but they always told her the same thing, "come back in 3 weeks, and we'll see what to do." So naturally waiting is the last thing any of us wants to do. We do not want to repeat the nightmare that already was endured due to their delays.

Fortunately we had Dr. Ludwig's cell number (the sarcoma specialist we were trying to get into). He had given it to us when we first met with him, but we had never really used it before. So we called him today. He calls us back and told us that he was going to see Iva on Wednesday. He is squeezing her in! He will do some research, see what clinical trial is available for her, and come up with a couple of options. He also told us that if the business office gave us any problems, to call him. We still owe them $20,000+ for Iva's hospital stay back in May. We applied to the Macedonian government fund for these medical costs, but it appears that due to bureaucracy and other issues, this won't happen. So now the question becomes, even if Dr. Ludwig has a great plan, can we afford it? and will they treat her since we already owe them so much?

On top of not getting anything from the Macedonian government, our fundraising donations have slowed to a trickle. We are organizing the benefit concert for September 3rd in hopes of raising a lot at one time. The success of that, obviously, lies in selling tickets. We are trying several marketing ideas. Hopefully it pays off. If not, I am sure we will think of something, but God! how much can we really take?

More Jazz

So I just got an email update from The Jazz Cruise.

This is totally like those commercials where the announcer keeps telling you, "But wait! There's more!"

"Hi Melissa,

I’m so excited to report that we will be assigning them a stateroom with a balcony as well!

You will be hearing from me soon! "


So I don't know anything about cruises, but doesn't the stateroom just sound great?!? I mean, really!

Beachin'

We went down to Galveston today, which is about 30 minutes from our home. We rented an umbrella and chairs and spent a few hours enjoying the day. The water was as warm as a bath, which is my favorite kind of water, and in the shade with the breeze--it was nice. Iva was not able to swim because she still has her PICC line. We are looking forward to her having that out; now that she won't be getting chemo, she doesn't need it. And that will simplfy things greatly for her. She will be able to shower more easily. She will be able to swim with our kids in the local pool. She will be able to do her aquatherapy for her legs. And just the hassle of caring for it will be gone.

Simply--it was a good day.

And All That Jazz

So 2 days ago, after getting her bad news, Iva mentioned that there was a jazz cruise she wanted to go on. It is a 7 day Caribbean Cruise that leaves out of Florida on November 8th. The main problem with this is the cost--about $2000 per person. But I decided to call to see of they would give us a discount, the most I hoped for was at least Iva's share of the cabin would be free. Her companion's we could pay for. So I called them Wednesday and they said, "No."

Basically they have already sold out next year's cruise, so a discount on this year's was not possible. I told the woman, Patty, about Iva anyway. I gushed out random bits of her story. Patty was geniunely interested, but unable to give me anything. I told her about our website and she asked me to call her back directly if we figured out a way to buy the tickets.

Zoran and I talked it over yesterday and we decided to try to get approval for their payment plan. I called today and asked for Patty, who, I was told, was not in today. I asked if she would be back Monday. The woman, Paula, said she would, but was there something she could help me with? So I told her how I had called Patty on Wednesday about tickets for my SIL and she had told me that no discount was possible, but my husband and I thought we could pay for the tickets using their payment plan, so could she tell me what we had to do for this? She asked me if this was for Iva?

Well they had talked it over and they decided to give Iva a cabin for free! All we have to pay (besides travel fees to get to Florida, of course) are the port fees of $285 a person!

Well I completely lost it at that point, and between sobs and exclamations of gratitude, she told me to call her back with more information.

I immediately called Iva and told her. She was elated and incredulous. All of us are, really. The generosity of others never ceases to amaze. Even in these dark times we can find things to be grateful for, which really is one of the many lessons of the day.

So Iva is going on her jazz cruise!

On another note, MD Anderson is so booked up on appointments, we won't be able to get in until September. This will give Iva the time she wants to cleanse herself of the toxins left behind from chemo and start fresh with a clean, well functioning immune system (we hope!)

From there, we just pray that Iva gets into the clinical trial, that she accepts the therapy as the right course for herself, and most importantly, that she is one of the ones who respond to the therapy.

And in the meantime, we have something amazing to look forward to! Today is an awesome day!

Progression

MD Anderson read Iva's scans and decided that the tumor in her lung has grown. This means the chemotherapy is not working. And that means, she will discontinue chemotherapy. We are waiting to get an appointment with MD Anderson to discuss Iva being put into their clinical trial for antibody therapy, which works miraculously well, but for only a small percentage of people. (I recall it being 20% of the people. Zoran recalls only 10%.)

Save Iva Benefit Concert Update

So here are the details:

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door only.

We are trying to sell 1,100 tickets, so in addition to attending, we need everyone's help in promoting this event. If you belong to a church or other organization, ask if they could place this event in a newsletter or bulletin. Please tell friends, family, co-workers, etc. This is a great opportunity for everyone to support Iva in her fight and enjoy a relaxing evening of great music!

Waiting

So we have been celebrating birthdays since May. First Maja's, then Mimi's (Iva's mother), then Antonio's, then Zoran's, the Iva's, and last week was Milena's. It is good to have a reason to celebrate these days.

Iva just finished another 5 days of chemotherapy. And now we are waiting, as always, to hear from the doctors.

A couple of weeks ago, Iva went through the restaging process--CT scans of the chest and pelvis and an MRI of the spine. These pictures tell the doctors whether the chemotherapy is working. Her oncologist at Deke Slayton, the clinic that administers her chemo, gave us pretty optomistic news after she had reviewed them. She said the spine tumor hadn't grown, and the spot in the lung was necrotic (dead tissue) and she wasn't entirely sure it was ever a tumor. We gave the discs with these same images to the sarcoma specialist at MD Anderson who had evaluated Iva when she first came to the U.S. in April. His enthusiasm was not as great. He agreed that the spot on the spine was not any bigger, but the spot in the lung was. He also said it wasn't clear whether the spot in the lung was growing due to necrosis, becoming cyst-like or whatever, or whether it was growing as a tumor. She also had several very small spots in her lungs (3 mm in size) that he didn't think we large enough to bother discussing. So their tumor board, which meets every Thursday afternoon, was to discuss her case this last Thursday and they would let us know. We haven't heard anything yet.

What they decide is whether Iva's response to chemotherapy is "acceptable," meaning that it is working and she will continue. If not, she will have a chance to join their clinical trial on an antibody therapy, which works remarkably well, but for only a very low percentage of patients.

This whole tragedy has taught us all so much. First, there are the usual things--life is short, etc. It has taught us that there are many people who really do genuinely care about helping others. And there are those other things you never really want to know about--like what kind of person you become under pressure. What constant stress does to you. What it is like to have nothing left to give.

There is a man at my work who just returned to the office after a prolonged sick leave due to cancer. He is very frail, thin, and all sorts of wrong colors afflict his face. I cannot even bring myself to talk to him, because I know I would be a hot mess if I did. And that is a damn shame, because I know that when people are experiencing tragedy, a lot of people have a natural instinct to distance themselves from the person. And this can really cause people to feel isolated and alone at the very time when they need others the most. I know I have been totally guilty of this in the past. Maybe I just didn't know what to say. Maybe I just didn't want to be the 20th person to make them tell their story that day. Who knows.

Part of the reason I haven't been writing so much these days is just that. I don't want to make Iva's struggle about me. There are always those people who no matter what you are going through, they seem to make every situation about themselves. I just don't want to do that. But the thing I have learned these last few weeks is that inevitably Iva's struggle is about me. And it is about her mother, and it is about her brother, and it is about our daughters, and it is about her fiancee. It can't help but affect us. It just does.

And so I have to continue to write even on the days when I am just consumed about myself and when there is nothing else to report. We have all been having a rough time in our own ways and although there is no change in any demonstrable way, we have all been irreversibly changed. As for me, I may still avoid things, such as an ailing co-worker, but not because I don't care enough or feel anything for him (which I think is the truth of the past), but because I feel everything too much these days.

Benefit Concert Postponed

The concert that was suppose to happen tonight has been postponed.

We have rescheduled it for September 3rd.

More information will be forthcoming.

Just a bit

Just a bit about the latest.

We are having a benefit concert for Iva here in Houston at UH Cullen Performance Center on August 2nd at 5 p.m. This is a classical piano concert. This event is only in a couple of weeks so we need as much help as possible with organizing a mass of people to attend. We are aiming for 1500 tickets to be sold. They are $50 each and will be available at the door. More to come, but please tell everyone you know!

Iva went to physical therapy today for an evaluation. They are going to do some strengthening for her legs and such.

She also went to the oncologist, who was her to have a new PICC line in tomorrow and start chemo the next day. The "tumor" in the lung is either dead or was never a tumor to begin with. It is not clear. The spot on the spine is essentially unchanged, which is progress if you look at it properly. The MD Anderson sarcoma specialist who initially evaluated Iva said he would be satisfied if the tumor did not grow. So we are choosing to count this as a victory.

More to come. Kids are crying!

Birthday

Iva's birthday was this past Sunday. We had a small gathering of friends, ate great food, and just enjoyed the day. For her gift, we wanted Iva to go pick out a wig. She has been a bit disgusted by her appearance and we were hoping a wig would help. Amazingly, it has. She feels great in the two she picked out and I will post pictures soon.

As for Iva's medical progress, she is suppose to have an MRI tonight. That will tell us what the spine tumor is doing. If there are favorable signs of response to chemo, she will get a new PICC line next week and start two more rounds of chemotherapy.

Great News

Iva's CT scan results are back, and the doctor said that there are no new spots. The spot on her lung looks like it is necrotic (dead), and in fact, the oncologist isn't sure it was/is a tumor afterall. Or that is what Iva understood her to say.

So all that remains is an MRI of the spine so we can see what is going on with that tumor. We are rejoicing a bit, but are still hesitant to sound the victory bell just yet.

Iva is even more hesitant than us to feel any relief, but hopefully after the MRI she can have some moments that replenish her for the fight to come. For the best news (that the tumors are responding) means more chemotherapy. There will be several more rounds to come. 5 days of chemo, then 2 weeks rest, 5 more days of chemo, then more scans. This process will be repeated for several months, more than likely. And in between, when she has no immune system, then more potential infections and other risk for complications. There will never be a time, at least not in the immediate future, when we will be without some feeling that something else is lurking. We pray for that day to come, but realistically, I know it won't be any time soon. But it is what it is. As long as we are in the fight, that means there is life. And as long as there is the strength of faith, then there is the will to fight.

Whenever anything tragic occurs, the most human response is to try to find meaning in it. The optimistic thing to do is to look for the "silver lining." In just these last 2.5 months, we have received support from so many of you, some of you whom we already knew, but many of you we did not. The fact that a complete stranger can be affected by Iva's story and moved to support her in her fight is a truly astonishing thing. This is our silver lining.

As an example, there is a pianist who lives in Chicago and is organizing a concert to be put on here in Houston for Iva. She has never met Iva or any of us, but is a friend of a friend of Iva's from years ago.

For all of our Houston supporters, save August 6th in your calendars. There will be tickets going on sale soon for this event, the proceeds of which will go to Iva's cause. More info to come.

And on a more immediate note: Iva is suppose to be coming home tomorrow. After one week in the hospital, she is ready!

Hospitalized

Iva is still in the hospital. She had another really high fever--about 103 for 5 hours today. She shivered so much and for so long, her muscles ached, especially her leg that has been bothering her.

The hospital finance people have been by to see Iva at least twice to discuss the all important issue of "How are you going to pay for this?" They have already said she does not qualify for state or county assistance, which is no surprise since she is not a resident, but interestingly, the hospital has its own charity program that she can apply for. In 6 weeks we will find out if she is a charity case or not.

Tonight she had a CT scan for the restaging. Since she was already in the hospital, her doctor ordered the test. She was too weak to go by wheelchair, so she went to the test by hospital bed. She drank half of the contrast and promptly threw it up. So they gave her the IV contrast instead. Hopefully tomorrow we will know the results. This test will show whether she has any new metastases or growth in the 2 existing tumors. She may still need an MRI for the spine metastasis. No one has told us for sure.

The blood cultures so far have not been consistent with the type of infection they thought she had. Initially, the oncologist assumed it was a PICC line infection, since it is common. However, the cultures are more consistent with a urinary tract or digestive tract bacteria. So they are changing her antibiotics and we will see. We can only pray that they know what they are doing and that this new fever does not represent a new infection picked up at the hospital, which is, unfortunately, more common an occurrence than it should be.

The house has been still and less full. None of us is enjoying it. We pray that Iva is home soon.

Set back

Last night about 6 p.m. Iva spiked a fever. After talking to her oncologist, we rushed her off to the hospital. We didn't want to go through the emergency room since they would just charge us more and since we knew she had to be admitted. We didn't need an ER doctor to tell us that. Unfortunately, we had to wait for an hour in the ER waiting room for her hospital room to be ready. They were disinfecting everything getting ready for her, which is great, but at that same time she was miserable, shivering from fever, working up a monster headache, and feeling like total shit. Difficult to be understanding and patient in that situation. But we did our best.

She was started on a mixture of antibiotics. They think it is an infection in her picc line, but they won't know for sure until the blood cultures come back, which takes 3 days. In the meantime she has to go fever free for 48 hours before she can be released. She still had fever this morning, so she will be there for at least another couple of days.

The good news is that Iva's white blood cell count has finally rebounded. From 0 a few days ago to 12 today. That's at least something we can feel good about.

Leg

Iva went to the orthopedic doctor on Monday. Although she has been handling the side effects of chemotherapy pretty well, she still has some real problems with walking. A couple of weeks ago she had undergone a bunch of scans of her pelvis, hip, and upper leg to see what was going on. The good news is that there is no new tumor growth in any of those areas, and her problems are all related to the surgery she had back in February. Her gluteal muscles and pelvic muscles are a real mess. So her hamstrings, especially in the left leg, are very weak and not working properly. So she can go to physical therapy to strengthen these.

The not so good news is that she has 0 immune system. Despite trying a new (very expensive) drug this time to stimulate white blood cell production, she has 0 neutrophils.

So to do physical therapy at this point and expose herself to the big, germy world out there seems like a bad idea.

The thing about cancer is that there is always something. Always something new to worry about. Always some other test result to wait on. You can never really ever take a deep breath and say, "OK, things are good right now." Cause you never really know. In Iva's case, we still don't know if chemo is working and what this whole immune system thing means. Later this week or next week, she will undergo a full scan to see if the tumor in her lung and spine are responding. If they are, then she will get 2 more rounds of chemo followed by more scans. If at any point, her tumors grow or multiply while getting chemo, then they stop the therapy. And that is the reason we cannot breathe.

Finally

Iva started chemotherapy yesterday. She has three more days and then this cycle will be done. So far, she is feeling pretty well. She is just more tired than usual. She has been making us the most lovely of all pastas for dinner. It is so great to see her up and around doing these domestic things.

Saturday and Sunday the oncology clinic that has been treating her is closed, so she will have to go to the hospital to get her chemotherapy those days. Then it is more tests and scans to see if it is working. Dr. Ludwig at MD Anderson will assist in reading the films to decide what to do next.

Monday Iva has an appointment to go see an orthopedist about her leg. He will be telling her what he thinks is the main cause and whether there is anything to be done.

Our Iva has been enduring so much and yet her spirit is shining on. We love you, dear Iva!

Another delay

So another false start today. No chemotherapy due to white blood cell count being too low again. The goodish news is that the scans showed no new tumors, but they did show the seroma has returned and is now two. The walls encapsulating the seromas are too thick to puncture with a drain as the risk of excessive bleeding is too great. The only way to remove them is through an open procedure (a.k.a. an operation). Since her immune system is too battered and she is to be getting more chemo, I don't think it is possible at this time. So the discomfort will probably continue. The problem is that the seroma forms because there aren't enough white blood cells, which are responsible for "eating" the serum. This causes the seroma to keep returning. At least that is how it as explained to us.

Today and tomorrow she will be getting immune-boosting medications (the same ones that already did nothing) and on Wednesday they will test her again. These delays are immensely draining for all of us, and we hope there won't be another.

Art-tastic

Today Iva decided she wanted to go to church, so she and Tony and Zoki went down to Galveston to the Serbian Orthodox Church. Zoki said the priest had a new robe, and he could tell he felt inspired. Good stuff.

Then we decided to head into town to go to a museum I have been wanting to go to since I heard of it nearly 5 years ago. The Menil Collection is not too terribly big, but it has a great selection from Medieval pieces (even 2 from Macedonia!) to 20th century modern stuff. There was one particular temporary exhibit that none of us got--a bunch of lewd and intentionally shocking pieces that seemed old hat really--vaginas, boobs, dead people, etc. (One of the pieces was, in fact, titled "Dead Girl.") So unimaginative, really. Perhaps it was her obsession with death that was so incomprehensible to us--we who have been focusing nothing but on life.

So the best part is that we got to get out and do something to enjoy the day before she starts chemotherapy again tomorrow. It was a typical hot Houston day, but it was time well spent.

Latest

Iva finished the first round of chemo and everything seemed like it was going well. Then she developed increased leg pain and swelling and the old pain with sitting returned. She has been undergoing tests of her pelvis and leg these last few days, and so far we know nothing that explains the pain. Her seroma is returning, but that doesn't explain the pain, weakness, and swelling of her leg. Today we went the last of the test, an MRI of the pelvis and upper leg--a $2,100 test. (And that doesn't include the fee for the radiologist to read the results.)

This past Monday Iva was suppose to start chemotherapy. After running blood tests, they decided her white blood cell count was too low. So despite giving her the medications to boost production, her immune system had been wrecked. Interestingly though, we have had an outbreak of a summer cold here, but thank God, Iva did not get it!

So Monday she is suppose to start again. Five more days and then more tests to see if everything is working.

In the mean time, we have been spending time together, eating and trying to forget. Tonight Iva is making us pasta and a lasagna for tomorrow.

Hot Bliss

Iva has been feeling well, but the heat doesn't agree with her. We went to Kemah, which is a boardwalk on the water where you can sit at a restaurant and watch boats float by from their covered patios, or you can sit by a large water fountain where children play in the water, and really awful (sometimes) cover bands try to recreate the magic of CCR and other 70s rock bands. It was too hot for her, as you can see by her expression in the first photo. Even though we were in the shade, she was miserable.

Today we went to the doctor for blood work and they found (as expected) that she is anemic and her white blood cells are too low. So she got 2 injections of medications to help stimulate both red and white blood cell production. This is all very science fiction-esque. The fact that she even has the option to receive these medications makes her move here to the US such a blessing. The only drawback, is that today cost more than a day of chemotherapy. Her chemo has been costing us about $1500 a day, on average. Today, with labs and the 2 shots only, it cost $2000. The moral of the story: science fiction costs a lot.

But the silver lining: I hear her in the other room playing with my daughters and it is the most amazing sounds in the world. I have goosebumps from the overwhelming sense of joy. My oldest daughter, Milena, has especially developed a bond with Iva. She wants nothing more than to be sitting in teta Iva's lap, being kissed and hugged, and experiencing nothing short of pure bliss.

Thank-you everyone for your donations and prayers that continue to make this all possible. You are the reason she can have this life, this time, this hot bliss!

Stronger

When Iva was in Vienna, she was mostly bedridden. She was too weak to sit up for any period of time, and definitely too weak to walk. After her surgery, she had briefly been able to walk up and down the hallways at the hospital, but as soon as she started chemotherapy, she was back in bed. When she left the hospital at the end of her chemotherapy, she was still too weak and debilitated to walk or sit. She was too nauseous to eat. She vomited all the time. Her heart felt like it was beating too slowly to support her movements, and she couldn't breathe too deeply. This was Iva's idea of chemotherapy.

When we went to visit her in Vienna and in the weeks following, I kept promising that here in the US it would be different. Not only would she not be in the hospital while getting her chemo, but that she would feel immensely better. She would not be vomiting all the time. She would not be so weak that she couldn't leave her bed. I was about 90% sure of that based on the people I have known who go through chemo and finish without having lost any weight (even though some of them had a lot to loose.) Well anyway, I don't think she much believed me. But a couple of nights ago, as she was finishing her dinner, which consisted of a pork chop, rice, spinach, and bread, I enjoyed an "I-told-you-so" moment. She flashed me one of her gorgeous smiles (for those of you who know Iva--you guys know what I am talking about.)

And then this week, even though she is getting chemotherapy, we have witnessed many improvements in her level of strength. She got into the car all by herself a few days ago. While sitting on the couch, she was able to raise her feet off the floor onto the couch. Two weeks ago she could not do these things. What a blessing to have her here in the US with us!

So she finished these first 5 days of treatment. Now is a 3 week rest, and then another 5 days of chemicals being pumped into her body. Then all kinds of tests to see if this whole thing is working. The suspense is neverending!

Chemo Take 3

So on Monday Iva began her chemotherapy. So far she has had some headaches, very mild nausea, and general fatigue. Nothing too bad. We are hoping this is the worst it gets.

She has been eating lots of pasta. Some hamburgers and hotdogs. She had a bit of a donut this morning as well. Crazy diet. But whatever makes her feel good is a great thing.

Iva still is not 100% sold on the idea that chemo is the right therapy. Healing through making you sicker is counter-intuitive, for sure. But really, when you have stage IV sarcoma, what choice is there?

We are just praying that in a few weeks when they do her re-staging, it will be shown that the "evil pharmaceutical companies" have it right. Where one decides to place one's faith is a personal choice. There is no real way of knowing if it is the right choice. But that is the whole concept of faith, right? Believing without seeing? Right now we have chosen to believe the chemotherapy drugs will heal Iva--that she will rise from this destruction of her body and live more of her life.

Kickin' It

Iva starts her chemotherapy tomorrow, if the doctors give the green light. We have to wait to hear what her labs from Friday showed first, but either way, she is having a PICC line placed in the morning. Then off to see Dr. Kodali and possibly her first of many rounds of chemo to come.

Fortunately, we have been witnessing a great improvement in her strength levels these days. She has been able to walk a lot more and use her legs more than she previously could. She felt so good that we decided to take a day's trip to see some more of Texas. We loaded everyone up in our sexy minivan and headed out to see some of the countryside surrounding Houston. It isn't much to look at, but it was nice to get out and forget about things (sort of) for a while. On the way back today, we got some lunch at a gourmet restaurant, also known as McDonalds, and Iva ate a whole Big Mac meal. Last year at this time, Iva was a vegetarian. Now, she craves hamburgers.

Tonight she cooked us some pasta and now we are just waiting anxiously for tomorrow to start. We pray that the chemo does what it is suppose to do and kicks some cancer ass!

We went back to MD Anderson yesterday to follow-up with the radiologists about her surgical drain. They removed it and we took the opportunity to visit a nice little oasis Antonio discovered in his quest for a smoke.

We then went to the new oncologist, who will be administering Iva's chemotherapy. It looks like she will be starting chemotherapy on Monday!

Today we are just going to all spend time together as a family, enjoying time with Iva while she is feeling relatively good.

Home Again Home Again

Iva came home from the hospital today. I went up there expecting to have to battle with the business office. They had told Iva she couldn't check out of the hospital until she paid them the $35,000 bill. The whole thing is outrageous. They know she doesn't have money, and yet they threaten her like she is some kind of criminal. My God! Like they were going to hold her for a ransom, and if I didn't fork over the $35k all in unmarked bills, placed in a bag, in the trunk of my car, and left in parking garage 10 south on the 5th floor, then that was it, they would keep her in the hospital and keep treating her indefinitely! What a threat! I mean, really!

In the end, we left without anyone saying anything about money.

The good news is that she has been without a fever for a couple of days. They so-so news is that she still has the drain in place, which is a bit uncomfortable, and disappointing for her. The healthcare system here in the United States is a bit different than what she is used to, I think. You are sent home with apparatus (like a drain) that you would never be sent home with in places like Vienna. Not that one is worse than the other, it just takes getting used to. There is a certain level of self-sufficiency and self-doctoring that is required here.

The bad news is that MD Anderson decided not to work with us on the price or the payments. They said that since the medications she needs can be received at other medical clinics in Houston, they had no reason to reduce their rates. (Plus due to the economic crisis, they have been laying off some of their employees. They rely heavily on donations and have recently experienced a dramatic reduction in the amount they receive.)

The other good news is that we have found a clinic that will work with us. It is really close to our home. The doctor is not a specialist, but is only a general oncologist, b. However, the sarcoma specialist (Dr. Ludwig) at MD Anderson will oversee things and assist in the decisions in Iva's care. He will also be available to review test results, such as CT scans. This is all very good. They told us they would charge 1/2 of the regular price since she is uninsured. What we don't know is what the regular price is. We will find out later this week.

So for now, we are all home again. Together. That is the best news of all.

Blame the Arabs

Today we went to talk to anyone who could help us at MD Anderson. We started with the Social Work department. Total waste of time. "If she is a foreign patient, you need to speak with the International Center." We went to speak to her International Patient Coordinator, a really lovely woman named Elnar, and she told us we could speak with the patient advocate, which we already had on the list, so that was good. She said she would also speak to her own boss, since she carried more clout, and they would get back with us. We spoke with the patient advocate next, another reasonable woman, who told us that there was one thing, it is called a medical override. Apparently, the doctors in the hospital's Vice President's office can authorize this if they are so compelled to. It would mean a better payment plan.

Then Iva's doctor came to visit her, after the patient advocate had told him all of this. He asked again about her going back to Macedonia and having them administer the treatment with him coordinating her care. We tried our best to explain to him how completely unacceptable that is just because the medical community there is unprepared to deal with any complications she might have. Then he brought up Austria again, which is also not a viable solution, because of the time issue. It would take time to get visas again, if they even could, and they would have to find a place to live, and they would have to wait for the hospital to have "room" for her (a problem in the past, which caused several delays in her treatment), etc. etc. Also there is the cost factor there. It isn't that much less expensive than here. The number one problem with Vienna, though, is there constant lack of urgency in Iva's case. There was just too much inaction on their part to ever make us comfortable with entrusting her in their care again. No thanks.

So Dr. Ludwig had the idea that he could ask them to treat Iva for a fairer price, he said "as if they weren't trying to make $100,000 off of her case," or something like that. He wasn't too optimistic. Unfortunately. He told us all about MD Anderson being a state hospital, about them trying to stay afloat economically, about their priorities being with Americans, blah, blah, blah. And interestingly, he told us that the self-pay foreign patients are always handled this way because most of them come from the middle east and have the cash. Just like the price of gas, you can blame the cost of care at MD Anderson on the Arabs too. :)

Tomorrow we are suppose to hear what they decide. Another fret-filled day.

Update

Iva is still at the hospital. Friday she underwent a small procedure to drain the abscess that has been causing her fever, and left a tube in to drain any remaining fluid. She is doing well and we hope that this will improve her ability to sit more comfortably.

Tomorrow Zoran and I are going into the hospital to fight for Iva. Friday we met with the business center who gave us the cost estimate. Not only was the price outrageous, but they want 80% of if up front. They told us that the prices were the self-pay prices, and the 80% was required because she is a self-pay patient.

What that means is that if you don't have insurance, then you are required to fork over almost all of your cost up front, and you get charged more for each item/service than the person who has insurance. It is a double whammy.

So the way they figure the cost is by every 2 cycles of chemotherapy, which is a 6 week period consisting of 5 days of chemo, 2 weeks rest, repeat once, and then CTs and such to re-stage the cancer. For each of these 6 week cycles, they want $122,000! That means for someone with Iva's needs, if she were to get the amount of chemo she needs (40 weeks), she would be paying over $1 million. And that is if everything goes smoothly without hospitalization, surgeries, or other unforseen events. Before they will begin treatment on Monday, they want us to give them about $100,000. Who has that much cash available to them? And what is worse is that you are dealing with a patient who has no financial means, who is supported through friends and family, and who is from a country that doesn't have the medical resources to care for her. What is wrong with this picture?

We offered to make payments on her bills, but they refused. Their suggestion? Can't she go back home and get treatment?

MD Anderson has a slogan, "Making Cancer History." Apparently, they will make cancer history only for those patients who have deep pockets.

This is why tomorrow we are going to talk to as many people as we can to tell them Iva's story and how ridiculous they are being. All we ask is for a fair price and a reasonable schedule of payment. Oh yeah, and just the little thing of them saving her life.

Emergency

So all day Iva had a fever around 39 Celsius (about 102 Fahrenheit, I think) and nausea, etc. We tried to reach her clinical team at MD Anderson starting around 9 a.m. Finally afer severl more calls with no response, at 5:30 p.m. the nurse calls and says she spoke with the doctor, please bring Iva to the emergency room.

Yesterday, the doctor told us Iva has a seroma. It wasn't too concerning since we were also learning about the spot on her spine and confirming the spot on her lung. Those two things eclipsed this other sack of fluid in the pelvis, because the doctor didn't seem too concerned about it. Afterall, it isn't cancer. But because of the fever, he thought it might have become infected.

So we get there, they do an x-ray, take her blood, and then lie her on a bed in the hallway. There are no rooms available, it seems. All rooms are full of sick cancer patients. Some of them are pacing around. Some of their family members are stopping at the ice/water machine right next to where Iva is laying. Some of the patients are vomiting loudly. And all this time, hospital employees pass by, most of who avoid eye contact, out of the distinct hope that you won't make any demands of them. After an hour or so of this, no one had told us what is going on, so I stopped a nurse and asked her, "Who can I ask about her case?" She finds Iva's nurse, and in a few more minutes the nurse comes over, "Did she just get here?" she asks. "If you consider an hour ago the same as just having arrived, then yes," I replied. So then the doctor comes and asks some good and some stupid questions ("Does it hurt when you pee?") She has a urostomy, for God's sake! Then the IVs are started and we are told she is to be admitted into the hospital for a few days. Once they have the results of her blood cultures, they will know if there is an infection and whether the seroma has to be drained. Antonio, fortunately, is able to stay with her. So another night for them together in a hospital. I told them that for the rest of their lives together, hospitals will make them feel strangely romantic.

Unforseen complication, but overall it does not appear to be too terrible. Just very uncomfortable for poor Iva. Ugh!

Mixed Bag

So there is a spot on the lung and a spot on the L1 vertebra, both believed to be metastases. On the positive side, the spot on the lung has not grown since February, and the spot on the spine appears to have been responding to the chemo she got in Vienna.

Iva isn't sure she wants to go through chemotherapy if they best they can give her is a 5% chace. Why make yourself sick for that?

How can you argue with that? I don't know what else to say.

Cinco de Maja

Today was Maja's birthday, and she got to eat cake and just be with teta Iva. How great a gift is that?

Tonight she is getting more tests done, the MRI of the spine. And tomorrow we will have a nervous day, I am sure, as we await the time to see the doctor who will tell us what he sees and what he plans to do about it.

Disbelief

So these last few days have been a bit dark. Iva was faced with that pessimistic number--5%. And armed with feelings of doubt fed by the doctor-father who assured her that if the lung images were sliced at different layers than previously, the radiologist wouldn't be able to see spots that were really there. Pessimism and doubt.

We, however, are claiming her victory. We are claiming that she can be healed. We are claiming that she will be a sister, a daughter, a wife for years to come. This we believe. This we must believe, even when the hard rationality of 5% is staring us in the face. That rationale, that reality, we chose to disbelieve. And fortunately, it appears that Iva is coming around to that disbelief as well.

Noggins

Since Zoran shaved his head, he and Iva have come to realize how much genetically they have in common. For example, the contours of their heads, the shape and fullness of their lips. It is all the same. Zoran took Iva to the bank today to set up a trust fund for the donations we are hoping to receive, and the lady asked them if they were twins. Funny.

Iva is getting more tests Tuesday. They are taking a pelvis x-ray and MRI of the spine. Then Wednesday, it is the doctor again and probably chemo. We pray for clear reports on all accounts.

In the meantime, we are enjoying just being together. Eating, laughing, playing with the kids. What a blessing!

Arrival

Tuesday Iva, Antonio, and Mimi all arrived in Houston. Zoran and I waited anxiously and 2 hours after their plan landed, we caught our first glimpse of them. Ahhh, joy!




Zoran shaved his head in support of Iva. He has had such little hair these days, I didn't notice straight away.

Finally, we brought our Iva home.




Wednesday we spent the entire day and evening at MD Anderson. We met with Dr. Ludwig.
Iva had blood work and scans of her pelvis and chest. Dr. Ludwig told us that if she has metastasis (growth of the cancer in other places), then her chance of survival is 5%. 5%! We were all shocked. We knew it wasn't good, these spots she might have, but 5%? He said they would try to discuss her case at the sarcoma board today (Thursday) and he would call us after at around 5. (Again with the 5s!) So all day we are trying not to despair. I did a terrible job of it. I was a mess today, really. Luckily, I was at work. But Iva, she was the bravest of us all. It was as if she didn't hear, or more perhaps, that she didn't believe, I don't know which. He had given us his cell number in case we didn't hear from him by 5:30, we were to call him. So it was decided that it was my job to call him. He explains they didn't get to discuss her case today, they had too many cases. But he reviews her scans with me on the phone and says her pelvis looks much better than he expected it to. What does that mean? Well with the pre-surgical scans from February, which showed such a large tumor he was expecting much worse. She may or may not have some residual disease in the pelvis. He wasn't sure if it was just surgical changes (the radiologist hadn't read the films yet). But the other news was that these spots they told her she had in Vienna after her last scan there earlier this month were gone except for the one on the right lung that has been there all along (at least since February). He said it has grown to 1 cm in size, about double of what it was in February. He called it a growth. So in the end we decided it was good news. And now she sleeps.

We love you dear, sweet Iva!

Travel

We reserved the tickets yesterday for Iva, Antonio, and Mimi to come on this Tuesday. Mimi and Antonio will be flying coach, but Iva would be unable to tolerate the cramped discomfort that coach class brings. So we have ordered her a business class ticket, which gives her one of the comfy chairs that recline and have foot rests. All that luxury comes at a steep price--her ticket alone is over $4,000! So in total, it is costing us over $7,500 to fly the three of them from Vienna to Houston. We are not quite sure where the money is going to come from, but we have faith that the blessings we have received thus far will continue.

Today is full of house cleaning and rearranging. How to fit three more adults into our home? is the question of the day. And the second question is: how to get things as clean as possible for someone who has no immune system? Especially given that we have 2 kids and a dog.

Thanks again to all of you for your prayers, your kind words, your offers of support, and your donations. You are all truly amazing. We are constantly humbled by the outpouring of support that has been offered to us.

Pixie Dust

The following is an email Zoran sent me today. It was titled, "received a check from a stranger yesterday":

It was $100 check, with a fairy on the face of it and a quote,

"It's amazing what a little pixie dust can do."

Now $100 is not some astounding amount, but it reminded me of our mission in this fund raising quest: so to paraphrase,

"It's amazing what a little pixie dust from a lot of people can do"

Amen.

Perma-smile Day

So this morning we woke up to the best two words possible, "Done deal." (Big exhale.)

So it appears the visas have been approved, but they are not in their hands just yet. The American consulate will be mailing the passports back to them. Of course, being Americans, they wouldn't break procedure and let them come pick the passports up in person.

But it is still the best news we could have gotten.

$25k

So we just paid $25,000 to MD Anderson for Iva's initial evaluation. The amazing part is that more than 1/2 that money was donated by our friends and friends of friends. Some of it from complete strangers.

Iva met with her oncologist in Vienna today. He said they were going to wait another couple of weeks to start her chemo anyway, so there is no harm in coming to the US for this evaluation. I can't help wondering why they would be waiting if she has these spots on her lungs. But again, since it is a pink elephant, no one is saying anything about it, and I don't have the courage to ask. She goes in tomorrow for her visa appointment. She has all documents we could conceive of sending. Now I am going back to holding my breath (and praying). Please feel free to join me.

Appointment

We received notice today that Iva has her appointment with MD Anderson for next Tuesday, the 28th. We really feel that this is her only chance. So thank God, they have approved her for an appointment. And thank God for all of you who have donated so much just so this can happen.

Thursday Iva and Antonio go into the US Consulate in Vienna and apply for their visas.
I am officially holding my breath until I hear they have been approved.

(Big inhale . . .)

Fund raising

Some friends of ours, who also happen to be crazy good photographers, have offered up some of their photos for sale. All proceeds are going to support Iva's cause.

Please visit the gallery here.

Big thanks to Matt and Dayna. We've got mad love for you guys!

Urgency

So today we stowed the kids away with some friends and then went to work on Iva's visa issue. It's a daunting task, and anyone who has ever tried to navigate the murky waters of that bureaucratic mess, you know how stressful it can be. They never tell you exactly what they want. I mean they tell you bring your passport, the completed application forms, etc. but then there are all these other unwritten things one needs to bring to prove this, that, and the other thing, but there is no prescribed set of things. Rather it is a combination of talisman that one takes with them to give the State Dept official the right kind of feeling about you. So we are gathering all these things and hoping it comes together in a harmonious blend, creating the right aesthetic.

And so the urgency is setting in. There are these spots on Iva's lungs, and her doctors don't seem too terribly concerned about them. They are the proverbial pink elephant that no one is talking about. The doctors go about their usual lackadaisical approach, waiting and watching. They have known about these spots now for 10 days. And yet they do nothing. She doesn't even meet with her doctor until this Wednesday. On that day he will allegedly be telling her what his brilliant plan is now.

And it is exactly this lackadaisical approach that is making us crazy. And why we are convinced that Iva's very life hinges on her coming to Houston to get treatment. There is no waiting around with a cancer that continues to grow during chemo. There are no extended holidays, as her doctor suggested to her it would be ok for her to take. WTF?

She is walking around the apartment now with crutches. Eating. Sitting. Staying awake all day. She is now strong enough to go into the Consulate and get a visa. So that is exactly what we are asking her to do this week. And if all stars align in our favor, she will be here by the end of this coming week.

Her evaluation at MD Anderson will cost $25,000--all of which is out of pocket. Then they will tell us what the treatment plan and cost will be. (We have been told it will start around $250,000. Again all out of pocket.)

You know that saying, "It is only money"? Well, that's crap. It isn't just money. It is life saving treatment. It is time we are buying, and hopefully a ton of it!

A step closer

Another day closer!

Today was more eating--pasta, polichinki, samri, watermelon. No vomiting. And best of all, walking! With crutches, but walking still. Our Iva is one step closer to being here.

This picture was the last time we saw her "walking." It was in February when we visited her. Then in March more chemo, and no walking since. This is all so good. MD Anderson will make her an appointment now and hopefully next week she will have a visa.

We are continually overwhelmed with gratitude for the support we have received during these last few weeks. Thanks to all of you, this is really going to happen. She will be here, in America, getting treated at the best cancer center in the world.

A good day

Iva was able to get up today for the first time in days. She went out in her wheelchair with her boyfriend, Antonio. She was awake all day. She ate sarmi sent by an aunt in Serbia.

All of these little insignificant details. People eat every day. People go out of their homes every day. None of this is particularly miraculous, unless you know that for the last several weeks Iva has been bedridden. Knocked down by a huge emergency surgery in February, during which they removed everything touching the tumor--part of her colon, her rectum, her bladder, part of her abdominal muscles, an artery in her leg, part of her pubic bone, some ligaments, etc. She fought back, walking for short distances with the aid of crutches. Then the onslaught of chemo knocked her out again. She couldn't stand. She couldn't sit up for more than a 1/2 hour. She was unable to eat. To breathe deeply. Most people execute these activities day in and day out without realizing they are so very extraordinary. None of this is easy or ordinary now.

We started our fundraising a couple of days ago, and just through the few phone calls we have made, we have already raised nearly $4k. Only $26k to go before the end of next week! If you haven't visited our website, please take time now to do so:

www.saveiva.org

Iva's continued recovery and chances of surviving this tragic disease are dependent upon the therapy she is getting in Vienna. She needs medicine, and unfortunately, her medicine costs a lot.