All much better!

After taking the drug the fever has disappeared! She is mentally much better, is smiling more, she could even get up from her bed by herself today. Will see what the next days will show but so far I am speechless...Konrad

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.

____________________________

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

Preparing for the drug.

Paulina will officially get the drug tomorrow on Tuesday. It's about time since her condition is getting worse every day. Once it's here we will hug it, kiss it and make sure it understands our feelings and the urgent situation. We know it will work...It was sent from heaven. Everyone please think of her tomorrow at 1pm. Konrad

Dream

I had a dream for a long time tonight. I was with John Paul II walking with him, talking with him, he showed me around, lakes, mountains. It was like a big resort. he was dressed in white as usual. Konrad

Our first Miracle!!!

Our first Miracle!!!

It looks like we got a green light to use Crizotinib very soon - a few more steps required, but it's looking good. Keeping fingers crossed and praying everyday so this comes our way very soon. Inside we are very calm and we know it is around the corner. So GO Crizotinib!!!! Our only hope!!!! Our angels are helping us and John Paul II is already working on our case!!!

Painting

Karolek painted this for Paulinka. The big gray elephant is sick mommy and the small blue elephant is Karolek helping her get better, is watching her and is telling her to go forward.

We need a miracle

We are scheduled to see a specialist on Monday who has a plan for Paula. Our only hope for now. We are still trying very hard to get pfizer to release the drug to us directly, calling US head office and others. We are connected to many top ppl who can get it but it's so hard. We could be put on a trial for this drug but they run on different far from now dates all over the world. Also who knows if the drug will help as it's still being tested, and if it's the one we need!? Maybe the option on Monday will be better suited?

Until now God has helped us make the right decisions, I believe this time around will be the same. We simply will follow his direction, we just need to see the signs. For me Monday is way too far, I am afraid Paulinas fragile physical state will not follow her strong will and her motivated mind. How much can she take? Whats the limit? The constant fevers and dreadful cough took a toll on her visibly.

My fears creep in as I sit here in her hospital room beside her at midnight. I wonder how much more suffering she will have to go through. She doesn't deserve it-but again maybe there is a reason for all of this. Maybe she is going through all of this so we can learn from her to value our lifes more, to love more, to enjoy every second with our children, families, friends. We should love to live. To wake up everyday and be truly happy. If we aren't it's time to reorganize things so we are happy, even if it takes extreme measures.

All things aside, we need another miracle for Paulinka.

John Paul II in Heaven, give us your helping hand and lead us... We need you here with us again.

Wow, just read now: Today, the Vatican approved Our Popes John Paul II beatification.... I think with this promotion...our Pope is SURE to pull some strings with theBig Guy!!!! I think somebody heard me last night!

A Snowy Tuesday

Slight miscommunication with the doctors. They found a drug but not THE drug, something similar, maybe better...who knows. To get Crizotinib we need a very strong case to get it on compassionate basis and we don’t (clear indication of lung cancer, but Paula has none showing so far, just the bone marrow showing cancer and blood). And to be put on a trial with this drug takes time and there is none here right now. There is different brands of this drug but not recommended. (need Pfizer) So the other option mentioned to us today might be better since Paula's condition matches the other drug more. Downside is it comes with light chemotherapy! They have it ready for next Monday...should we or not is the question now...??? Or try harder to get Pfizer Crizotinib? Her physical and mental condition is worsening so time is of an essence.

Konrad

A Sunny Monday

Dr. King came in with a huge smile on his face, and said he has an appointment for me this week with a doctor who runs clinical trials at Princess Margaret Hospital.. and he's got the ALK INHIBITOR !!!!!!!!!!

We'll see where it all goes from here. But here we have a start. We are blessed to be where we are now. Thank you all for helping us to research trials using the drug, for every link, form, phone calls made to Pfizer on my behalf. It wasnt going to be an easy process but its great to have that rock lifted off your shoulders knowing the drug IS there. So sunny day indeed.

Recently I had a bronchoscopy (third one) to prove theory this could be CMV. To agree to do this procedure (my counts still low) Dr. Levy requested platelets night before and in the morning, and immdediately after the bronchoscopy. All went well and this made me much more comfortable with the procedure.

FINDINGS so far from Bronchoscopy done on Jan 5, 2010
1. Positive for influenza A -- Tamiflu started on Jan 5
2. Negative for CMV IgG --Valganciclovir terminated on Jan 10 -NOT CMV
3. Early evidence of fungal infection in lung --Voriconazole started on Jan 10

So those are some underlying things going on in my body, and BOOP, it seems it is no more?, I am being weened off prednisone (25mg now).

Today marks 2 weeks since Konrad and I ventured out of our house, confused and exhausted, to get me admitted to hospital. So much has happened since then.. So many emotions, but for me I have mostly just been holding on to the rollercoaster ride (and I hate rollercoasters!). The chills and the headache and the fevers, and then I'm just left to ride it out, round and round the day. At 40 C I dont know where/who I am.. at 38.5C a little better and start removing warm blankets and getting wet face cloths/body cloths.. by the time 37.5C comes, I am barely able to smile the ride has passed and just hope.. I'm READY to make this stop. I will update with what we find out at the clinical trial meeting.

To my shock, my weight was down from 47kg on December 1 when starting Prednisone to just 40kg yesterday.. I know I need to force myself to eat; but in past day or two I have been eating a little more.

On brighter note, in the last 2-3 days I have been able to get out of bed with less and less assistance. My New Years Resolution. Its scary for me to see how shaky I am on these legs now, so much muscle gone already from lying in the bed with fevers most of the day. When Karolek came on Saturday he motivated me to make one such walk down the hallway. I observed him, he pretended we were being sneeky and quiet and so walked on his tip-toes slowly alongside me ;) He proudly shouts 'hi guys, bye guys' to whoever's at the nursing station when we leave the hall and go back into my room.

As a side note, both Konrad and Karolek are on Tamiflu as well, preventative (for anyone interested, there is an influenza A outbreak). Karolek started getting fevers just before the weeekend and they would come and go it had us worried, he's doing much better, but to be on the safe side Tamiflu for him as well. It breaks my heart I was not home with him, Konrad called asking what I give him when he has fevers, I love that I can still be part of it all I just want to get out of this and snuggle up and share those germs of his when he's sick, worryfree ;)

Paulina, Konrad and Karolek

Call for help..

The bad news like Konrad said is that 15% of the bone marrow is lymphoma (ALK+ large t-cell type). In all bad news there is good news and ours is that there is a promising new experimental drug that specifically targets this lymphoma -Crizotinib.
If fevers are not resolved by antiviral treatment I am now receiving for the other suspected condition CMV (could also cause decreased counts in the marrow), we will need to get our hands on that drug.
This is a call for anyone who knows of a supplier, someone doing clinical trials, to help us gain access to this ALK inhibitor, Crizotinib. A network of doctors here are trying to locate it. So far no luck in the area, they are searching further but I thought if we asked you, we may increase our chances, someone always knows someone :)
May each day bring us all renewed hope,
Paulina

All the links and informations please email to me at paulinaswaytohealth@gmail.com so I can act fast and share any info with my doctors. Or simply paste any links below in the Comments section.

The story goes on...

I have no time to write a more detailed message, but I am sure everybody wonders what is happening with Paulina. I will make it very short.

The plan for the New Year succeeded. After kidnapping Paula from the hospital ;) we had 3 hours of fun with friends and our little Karolek. Best start ever into 2011. It was the best thing for Paula, to see her little boy having so much fun  and seeing happy dancing friends and raising a champagne glass in a happy place is always something rewarding. We were back at the hospital at 12:30 since she felt really tired and a lineup of pills was waiting for her. She needed to rest anyways, but with a smile on her face!!! What great memories after just 3 hours!
She sadly is still in the hospital, kind of feeling worse every day. The fever sometimes doesn’t stop all night and sometimes it stays for the entire day like yesterday. About 39 mostly, peeking close to 40. That is why she is not writing, she just has no energy for anything. Her phone conversations stopped as well as her voice...its harder for her to talk. Walks to the nearby washroom are really difficult and she usually requires help to walk. But this is only when she has that fever; once it goes away she does everything by herself. She now requires constant supervision, and at night she hardly sleeps.

She had a 3rd Bronchoscopy done today as the doctors have an idea what she could have and are testing for this now. She has heavy light sensitivity which is also a clue for the doctors. They dont want to wait for the results and are putting Paula on a drug that should help, whatever they think she has (cmv? and some other one, plus many other viruses that might be there) ...they got really good samples of her lung tissue today so hopefully there will be better results then last time.

...but on a sad note after her last bone marrow biopsy they discovered  that there is 15% trace of cancer...but that doesn’t mean that it is active yet, once they treat the above CMV or similar, this might not show in the next bone marrow and it might just go away...anyhow, hard times. As you can imagine the priority is getting rid of the fever now so she can start thinking clearly, its just taking so much out of her. We believe the doctors are right and its just a bad virus...thay have treated Paula with great results last year and years before, they know what they are doing and we trust them 100%

Konrad