Back from Chicago

Just wanted to post a quick update saying the three of us are back from Chicago!! Drive there and back was really not bad, averaged 10 hours each way, with lots of stops for rest along the way. Karolek was a trooper and loved staying at a hotel and was happy when he finally got to go to the pool (the whole way there, thats all he talked about --'I just cant wait to go swimming').

Though it was still cool (and indeed windy in the 'windy city'), it was nice and sunny when we toured the streets of the beautiful downtown core. We made it to the Disney Store, LEGO store, enjoyed lots of great food -Cheesecake factory, tried Chicago's famous pizza, and had a really nice time at the nicest Rainforest Cafe I've been to :-)) It was nice to take this trip, though we knew why we were there and reality checks came when I had a few episodes of fevers running their course despite taking the drugs. But Konrad and I found much needed moments where we would just "forget" for awhile - Especially seeing Karolek's eyes light up as he saw new things --Life through the eyes of a 4-year old, so simple, so free of worry, and so easily made to feel happy..

Generally, the consultation was fruitful in that the doctor suggested two other drugs, which are available on the market, that could be options for me. As for the SGN-35 drug trial, I am not eligible at this time since they require a 4-week "wash-out" period from chemo prior to starting it. After looking into it, the trial sponsors and decision-makers decided Crizotinib is considered to be "chemo". Therefore, if I get off it, they have said I can be a candidate in one months time.. I guess we will cross that bridge if and when we get there.

Question is, how will I be if I stop taking Crizotinib? The increased dose this past week has not helped with the fevers but I'm still not convinced its stopped working altogether.. Hard to say but one month without any treatment (except prednisone?), with a very unpredictable and fast-progressing cancer.. Scary thought.

I see my oncologist tomorrow. We will go over the options again. It feels like a bit of a race with time -- fevers are now every 8-10 hours. Each day is crucial and there is no time to waste but unfortunatly no easy or obvious decision stands out at the moment.

I am hoping one of the other two drugs (I will post more on them later) may be an option first, but not sure if they also require me to be off Crizotinib before I can start them.

I will post when I find out more tomorrow.
Paulina

Ups and Downs

I realized looking back at pictures that exactly ONE YEAR ago, on March 22, I started mini-BEAM chemotherapy which, down the road, put me into remission. And now one year later, here I was, being told not for the first time, but for the second, that the lymphoma had relapsed.. A crazy thought. To have had so many ups and downs in just ONE YEAR of time..

Each day brings new perspective. Yesterday was a DOWN. Today ended up being more of an UP. We went back to the oncology clinic today to pick up hard copies of all my records, treatment history, CDs of CT scans/bone scans/gallium scans, pathology slides.. Everything to carry personally to Northwestern Memorial Hospital in Chicago for our appointment this coming Tuesday.

We are excited about this trip now, decided to take Karolek along, and booked a hotel right across the street from the hospital (and double-checked that the indoor pool is in service so he can have a swim with Konrad while were there!). Apparently there is a LEGO store next door so that will make the 10 hr long road trip worthwhile :-) (hopefully!). We're right downtown Chicago, leaving home Sunday, coming back Tuesday after the early morning consultation. If anyone knows of any attractions/shows/stores/things to do that may be fun for a 4-year old on a Monday in Chicago, would be great to hear of any ideas!

At the clinic, my doctor was waiting with some news. He had heard back from Pfizer already, and.. we got the approval for increasing the dose --effective immediately!! There was the obvious concern of drug toxicity so they wouldnt go higher, but now instead of 250 mg twice daily I am on 350 mg twice daily starting today :-) I had to share this good news. My weight was also measured and I hadnt lost much in the past week so this is also a positive (though may not reflect much as the steroid has me eating a LOT).

We're hanging in, the snow blizzard we had today was crazy, but our spirits were sunny..

I attach a few recent pics carefully selected to showcase some big sunny smiles in the time since I've been on the angel pill Crizotinib :-) Perhaps it just needs some tweaking now in dosage to kick in again..

Thank you for being here with us, helping pull us through with your support, concern, and positive thoughts and gestures.

Much love,

Paulina

Find another way to breathe..

As many of you gather from Konrad's post, things havent been going so well lately. Thats not to say they have been all bad since my last post -- in fact, things took such a turn for the better, I was doing 'splendid' as my oncologist would say, beaming each time he saw me. 

And these comments were from everyone who witnessed my transformation. Up 10 kg from pre-drug weight, I gained the stregth to walk again, got the color back in my face, literally the drug became my lifeline. Besides visual impairment (some dizziness and blurry vision), side effects were pretty much negligible.. Of all who noticed, most touching to me of course was the critiques I would get from my #1 fan, Karolek, who was already praising me on how much faster I was (I was doing better and better at our daily race to reach the top of the stairs), and he would happily comment that I wasnt coughing anymore. These lovely comments from my precious preschooler, amongst his countless "I love you mama"s.. I cherish each moment we have all spent as a family, and I am so thankful for this time that Crizotinib has ultimately given me in the difficult path we walk.

Unfortunately, what we are still trying to swallow, is that about 6 weeks after starting the drug, around the 10th of March, the fevers returned. They are getting stronger and more frequent, much like before. It seemed like a flu virus that has been going around - cough and nasal congestion. But after a week of 40 C fevers, and Tylenol not working to control them, I'm back on prednisone (the steroid). To give an idea of progresssion of the fevers, when I started, I was taking once every 24 hours, now 7 days later, I need to take it every 12 hours.. Bone pain has returned as well and comes with the onset of fevers.

"The most likely explanation is, unfortunately, a relapse of the lymphoma".

CT scan showed no enlarged lymph nodes, which are usually present in diagnosing lymphoma. However, bone marrow biopsy done last Monday has come back positive for lymphoma cancer cells once more. Doctor believes that the cancer was gone in that timeframe when I was feeling good; but has since re-appeared. My bloodwork is still okay, but markers for cancer cells are again on the rise (as an example, LDH was 2500 when I was very sick in December, it went down to 190, now its around 780)..

Options:
1. Increase the dose of Crizotinib. We are waiting to hear back to see if Pfizer will approve this request. I am currently taking 250 mg twice daily. If the ALK has mutated, the drug will be ineffective no matter the dose. However, there is a dosage study out there that gives patients 2000 mg daily -- and some doctors speculate that lymphoma patients may need higher than this standard dose I am currently on.

2. SGN-35 Trial. We are driving down to Chicago on Tuesday March 29th for a consultation on this drug. It targets CD-30, an antigen present in my ALK + Anaplastic Large Cell Lymphoma (ALCL) cells. As far as I understand it, its targeted chemotherapy, the drug is a CD-30 antibody--drug conjugate. So the antibody binds to the antigen on the surface of the cancer cell guiding the drug to these cells specifically, rather than killing healthy cells, as in standard chemotherapy. They have had success in patients so far, have to do some reading before next Tuesday.

3. ?? I hope there are more options, for now, we explore these..

Big decisions lie ahead.

If anything can be gained from me sharing this hardship we are going through, its that this be a reminder to cherish each and every day. As easy as it is to take our life, our health for granted; without it, we can just pray that by the grace of God, we pull through another day.. Do what makes you happy today!! And love the ones around you with all your heart.

Paulina & family
    

Another Day

Its been a while since my last posting but I think its time to let you guys know what is happening. In the past few weeks we have received many phone calls and emails from friends and also people who we don’t know at all with words of praise and encouragement. Thank you all for every word and concern expressed. Every word of advice means so much to us.  We know, as I said it before, that we are not alone and people follow our story with their hearts. Thank You. I hope we can help you guys too somehow to chose the best ways in your life by our super difficult example how a great life can be turned down in a few weeks, to a state where really nothing else counts but you and your health in this life. It’s not the houses we own or cars or toys...it’s our health. What’s life worth without it? Even if we own a Ferrari, Million Dollar House, Business it will not matter that day when you have no energy to get up, the Luis Vuitton bags or Gucci are worthless. Health#1....Love, kids your closest family and friends are most important. So if you have some money that you save for something big like upgrading the floors, new bathrooms, cars… invest it into your health first! Go on a long vacation, join a gym, eat healthy and slowly, enjoy the surroundings, read a book, relax, relax, relax!....but I know,  Its easier to write it then to do it, but please at least think about it sometimes J

Also Thank You for all the donations, obviously every dollar is put into a great cause and we make sure we live somehow without worrying about all the payments and debt. This should be the last thing to worry about now. And we try not to.

 I cant say much about Paulina's side of things, she will post her own posting this week but I will try to describe a few things that were going through my head in this difficult past time period. Sometimes when I go for a walk with Pepsi, our dog Yorkiepoo, its all clear what to write and once I get in front of the computer at home I freeze inside and am unable to put anything together. And that is what I want to write about, the incredible thing which is our human body. I think I understand now what has happened to me which is a very strange event. Since Paulina’s last battle in the hospital, where she had days left in her life, we gave her this drug Crizotinib and yes indeed it miraculously helped her recover, slowly move her health into the positive side of things, move away from the darkness that we might have encountered. Myself, I went though a shock, and as I know now my mind automatically, without my influence, locked up back then, it got ready for the worst without me controlling it. It prepared my for the worst and it turned my emotions off completely. The thing and problem is that Paula is feeling much better now and my mind-state has stayed the same. What that means is that I am emotionless recently, I find myself being absent, like in a dream, the days go bye without me remembering what happened yesterday. I think it’s amazing in some way that our bodies are protecting us, they are shielding us from the evil that comes our way. A good example of this is when Robert Kubica the Formula1 driver. He recently had a horrific accident where he almost died, when he is asked about the accident he doesn’t remember anything, first thing he remembers is the day before, that’s all. It’s great because he can get back into racing without any traumas or fears. Same with me, my brain was and kind of is still shut off, shielding me from all this stress and worst events/memories that I might have. Many times as I got phone calls from friends I had to describe Paulinas suffering and I always broke down  in tears when describing my our reality. I have a very creative and artistic mind and the way it works is that when I describe or remember something I just replay this movie in my head and it’s very real, very intense. I re-live it again and it hurts sometimes. Same with this blog, every time I write anything its from the bottom of my heart and it just drains me completely. That is why I tried to "recover" a bit recently and avoided the internet completely. Also the doctors scared the hell out of me too a few times (if you read my earlier posts) and you just think of the worst to come and you are constantly remained that the situation is bad. Its just a mental killer. My job is graphic design but I am creatively dead now, wonder what to do with this now. I do need a rest for a while I think, I ran out of the last drop of energy and my body reacted this way protecting me from further harm. Amazing how our bodies work.

Now regarding Paulina, yes she has left the hospital after a few weeks after taking the first dose of Crizotinib and she stayed home ever since. It was very hard because the nurses at the hospital did everything around her; they were amazing, angels so to speak. They were there on call within 20 second when Paula buzzed them with a few exceptions but that was fixed with a few chocolates. Well to replicate this at home is quite the challenge since we have our son who also needs close attention as he is 4 years old now and everything excites him :))) Lovely little fella. We, and our family had to juggle things all day around Paula but it paid off in a big way. Soon Paula could walk, although slower, but hey, what do we want more...climbing the stairs to the bedroom was very difficult since her muscles were gone (don’t forget her weight was 38kg) so she had to rebuild them slowly step by step. And Karolek helped her too with pushing her up the stairs and showing her how to do it using arms too, just like Pepsi or sliding down on his butt :) fun times in some way, we made the best out of it, accepted it as a norm. Paula gained now about 15kg I think (she will let you know the details soon) and she can even walk slowly to the mailbox. We did a few short excursions like the Maple Syrup Festival or the gym for Swimming and other cool classes for Karolek. Things got slowly much better and we knew it would take months for Paulina to be fully mobile and strong but we are patient.

Now the more negative news…Unfortunately about three weeks ago the fever came back shortly for a day or so. We thought it’s just a virus as we heard that many people have colds but the fevers came back and now it got to a point where the fevers are there every day again now. Reaching 40. Also the cough came back but only in the morning but its rather strong, its productive. I will not write more about it because I want Paula to have some room to describe her state but we are a bit afraid again. Did the cancer mutate that Crizotinib (our angel drug) doesn’t work anymore? Did she maybe just get a cold that weakened her body so we kind of took a few steps back but once the virus goes away we move forward again? Fears creep up slowly again. Will keep you posted.

Love

Konrad