Paulina swollowed Crizotinib

Yesterday at 4 pm after a long prayer Paulina took Crizotinib. It was quite the experience, all the hopes and prayers were in this, an incredible build up, everything riding on this little white pill. Miraculous heavenly moment. We felt an incredible energy in the room.

With constant thoughts that John Paul II is watching over us we kind of took the ride since day one. At the beginning of the hospital stay after Christmas, Dr. King told us that he thinks that there is a drug that might help Paula.  He wasn’t too sure if we can get it but sadly it was the only option he said. He confronted me twice privately telling me that if we don’t get that drug he gives her just a few weeks to live, and we didn’t know if we will get the drug at all then. He said the sickness – Lymphoma in Bone Marrow (my interpretation, for sure there is some code for this or smarter name) - might progress very quickly, as it did in some cases in his past experience. I didn’t believe him then. But looking at Paula experiencing horrible fevers reaching 40, but 39 mostly, chills, constant “ripping-your-rib-cage” cough attacks, losing weight (she is 38kg now), no appetite, being absent mentally, losing memory, hallucinating; it didn’t take me much to believe what the doctor was saying. I didn’t know what to think but as you can imagine horrible fears came and worries. How is anyone ready for such a time? How can you prepare yourself? How can you stop yourself from thinking about the worst what might come? Paulina is the mother of our Karolek and also my loving wife and we have built our family on such strong grounds and we have such great plans for the future, how can this end…why? What then? …empty space in my head…nobody knows how to act in such situations and I do not wish anyone to be in one like that. Trust me, I aged 5 years in one year, my birthday few days ago felt like a minute, didn’t want to answer the phone to get some silence, peace, to find myself, spend time with Karolek.

Anyhow, lets gat back to  Crizotinib. The drug as it is offered only on Trial basis (not yet available in pharmacies) is very hard to get. There is only a few trials running all over the world at the moment, Chicago, Seattle, Boston, Italy…etc. but the worst thing is that Paulina would NOT qualify for any of those since she has different symptoms required for a trial/test/experiment. So, the only option was to get Crizotinib on compassionate basis (for emergency only situations) which is even harder to get. We spent hours talking explaining the situation with various Pharma executives all over the world. Many people were on this. The days went by and Paula’s condition worsened, we started to get angry and exhausted at the same time, as we knew the drug is there, it can help us but bureaucracy doesn’t allow us to have it, at any cost. But finally, one day, same day as we all heard on the TV and Radio that  John Paul II beatification is approved, things happened, phone numbers finally worked and people finally listened to us and we heard that we will get a chance to get Crizotinib. Coincidence? You will be the judge…

Thank You everyone involved in this, without your help it wouldn’t be possible. Tank You for trying so hard, and as someone we love said, “It wasn’t me, I was just an instrument of John Paul II”. I agree you were!

Now after very long weeks and even longer weekends we finally got the drug. The pill finally arrived into the room yesterday. Just on time. We wouldn’t be able to wait another week.

Inside of my heart I was peaceful most of the time, I knew that the pill will arrive here on time but I panicked and worried only as others panicked trying to rush things understandably.  But sometimes it’s all up to God, we must take what’s given us, not ask for more. I was afraid that God might be upset how hard we try to selfishly rush things and not allow us to get it at all…of course the rush was out of love to Paula. But the super calming feeling came and I knew we will get it, Paula said the same thing, she feels it will just turn out fine.

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Last year we went through a similar situation where the doctor pounded me with news that Paula might “go” any day. It was the first time for me, quite the shock. She was maybe in a worst condition as today, going through the worst of Chemos and a Bone Marrow Transplant, very risky procedure. She was half alive during this crazy time. We spent countless days talking about life, people, us and everything (need 50 pages for that)…luckily the days went by and she slowly recovered. Obviously from that day on when she left the hospital she was a different person. She had a different view, and she knew what is most important in her life. It’s us, her closest family and friends.

I quit my contract job already (keeping my side business alive) during the Winter time last year to spend every possible minute with Paula or Karolek - Two people that needed me bad and there was no other way in my mind, and nothing else mattered. Obviously other people thought it wasnt right - Try walking in my shoes I thought…also who cares what others say!? They must have been miserable people if they don’t understand my situation.

The following summer (last summer) was the most beautiful time. Paula was free from any sickness, although she still was fragile and weak as was recovering from the transplant. All 3 of us we felt free and so happy! We traded the Jetta for an old cabrio and we just took rides with the wind in our faces anywhere, just cruising left and right up north, sometimes coming to the same spot as few hours ago. No direction whatsoever. We went camping almost every weekend, rented cottages with friends and family, had boat rides, bbqs, enjoyed our own backyard a lot with kids parties and such…great time, the best we could have had.

Then on one of the long weekend Cottage outings Paula started to cough heavily. It never stopped until today. That weekend the sickness started to do its damage and we all know where we are today.

On the first visit with the doctor few months ago when he told us that the Lymphoma is back we just “shrank” internally, we wanted to disappear and hide hoping it is just a dream. It was very real, we were sitting in the room drinking coffee not expecting any bad news and then booom, reality dropped a bomb ripping our hearts crashing our “perfect life”. On that day Paula broke down, said she doesn’t want to fight the sickness, she has no strength anymore. She said she just wants to go back to Poland to the Baltic Sea, to the beach and wait until God takes her there. Having gotten from God another most beautiful summer with her child and us, it was all she wanted. I agree, if God took her last year we would never spend such great time together. She was much fulfilled and very happy (maybe that was a bad thing). That summer she has found herself, she finally understood who she is, she faced all her fears, she was more self-conscious, she was a woman fighting for her rights in the big cruel world. She tried to erase things that bothered her in the past from her head so those never haunt her or make her cry again. A few of her major problems she can not solve by herself, hopefully they will be gone soon, as it maybe that’s why she still struggles, as most sickness comes from stress and emotional torture.

The same day, Paulina was put back into Oncology room and we stayed there for two days crying and making peace with the situation. To our “happy” surprise she was released from the hospital two days later based on the fact that she might have Pneumonia and the swollen Lymph nodes on her lung could be from the excessive cough. They disappeared suddenly but cough continued. Very confused and mentally shattered we returned home. But the sickness slowly progressed. Shortly before Christmas her condition worsened so much that we knew that something big is happening and that the previous prognosis is true and oncology wing in the hospital is the only answer. Paula just didn’t want Christmas to be destroyed and she made it through Christmas with a smiling face but horrible pain - physical and mental. She thought that it might be the last Christmas ever. First day after Christmas she was admitted to Trillium where she is until today fighting like a champ! Now she wants to see Karolek’s wedding!!!!!!!!!! Now that’s a reason!

Today, after taking the pill yesterday and today she is mentally much better, she smiles finally, she is peaceful, calm, she knows things will be better slowly. Finally she sent a few SMS messages, as she hasn’t touched the phone for weeks. Fever and cough and fatigue is still there but hey, I don’t expect anything more then a smile a day. Such a happy day!!!

Love, peace and health!!!

Konrad