Results are in

My sincere appologies for not writing sooner.

Anyone who has seen me in the last couple months (since starting SGN-35), will say I smile more than I have since even I can remember.. I have been getting my share of sun with the beautiful summer we've had, but its not the tan but a kind of glow from the immense happiness and appreciation for life that I carry inside me.. Hard to describe, each moment is a living reminder that you are holding something you felt escaping your grasp just a short while ago.

Konrad and I found ourselves holding our breath as the oncologist was reading results this week from the bone marrow biopsy. We've had our share of bad news the past 2 years, even when we've least expected it.. but God has blessed us time and time again, and this time the news did indeed reflect the way I feel.

The bone marrow biopsy came back NEGATIVE for lymphoma. So at this time, NED - No Evidence of Disease.

We have seen how quickly this can change, so we continue to hold our breath, but yes, we do REJOICE in the moment. Especially in the fact that this now opens new doors.. Possible cure by transplant from a donor (since my own immune system fails to recognize the lymphoma).

As often cancer treatment goes, the time to subject yourself to the hardest, most difficult procedures, is when you are feeling strongest. Difficult as this may be, as my doctor has said, 'the ball is up in the air' right now; this is the time we have to chose how to fly with it - we can do something, or nothing. We have reached a pivitol moment.

In the words of my good friend, in deciding on next steps, we often literally are left with having to 'take a leap of faith'.. So many thoughts consume me, it is not at all likely that SGN-35 will work forever. I wish it could, and perhaps the cancer is gone forever - but is it worth the risk to do a transplant to ensure it never comes back? I am slowly learning to embrace the fear of what comes next in my life, and letting my faith give me comfort and strength in moving forward.

And only time will tell. All any of us can do is pray, and hope and put our trust in God. 

Otherwise things have been great at home, soaking in each moment. We have been cottaging, spending lots of time relaxing in the backyard, BBQ and last weekend we celebrated our friends daughters first birthday at the farm (picture of the three of us below).

Summer is flying by, and Karolek is slowly warming up to the idea of starting school - he starts JK in September! We signed him up for a program called 'Science Magic' once a week in our local library and he loves it (first day involved making slime, and he was so proud of his accomplishment - love how the teacher makes it so fun for 4 year olds).

Sorry for the long-winded letter, I felt I was a bit overdue and I thank you this has helped me put things in perspective.

Were back to Rochester this Friday for round 5.

As a side note, I've added my medical history at the right hand side of the blog page for quick reference. My journey with lymphoma has been somewhat complex, I appologize for being a bit technical, but its more for guests going through similar experience or collecting information - I have found this type of detail most helpful in my own research, on other blogs.

Paulina

SMiLe with the RiSiNG SuN

I've had a song in my head since before Jamaica, "Three Little Birds" by Bob Marley.. I often wake up and start singing this song, and it makes me so happy to find Karolek singing it too throughout the day since he also learned the words :

Rise up this morning,
SMiLe with the RiSiNG SuN
3 little birds stop by my doorstep
Singin' sweet songs of melodies pure and true,
Sayin', ("This is my message to you-ou-ou:")
Singin': "Don't worry about a thing,
'Cause every little thing gonna be all right."

Some pictures from our much needed get-away


We had a beautiful time.

Tomorrow a dreaded bone marrow biopsy as part of the re-staging process; and Tuesday we are back to Rochester for Round 4.

Thank you to all those who have messaged us regarding the work of Dr.Burzynski. We are looking into this as an option, and we would love to hear from anyone with advice or experience with this clinic; this would be much appreciated. We will need to make decisions on next steps once we know the response to SGN-35 treatment so far (results in 2 weeks or so).

Until then, God bless and keep on smiling :-)

Paulina



Life is good

Long overdue update.. where has time gone ?

Still having regular clinic visits to check blood counts, but the numbers are improving. No transfusions. We were in Rochester June 2 for my 3rd round of targeted chemotherapy (SGN-35). Plan is for me to be restaged before the next round of chemo, and depending on how the cancer has responded to treatment, to decide how many more rounds, and perhaps even consider an allo transplant in the future.. ?

We will cross that bridge if/when we get there..

The past 3 weeks have been busy, but more of the fun and exciting kind of busy.

My aunt came to Canada for the first time from overseas :-) It was so nice to have her here, it was worth every sore muscle after touring Niagara falls, and a trip to the top of the CN tower thanks to a convincing and fearless 4 year old ;) My uncle and second cousins also joined from the States for a few days at the end of her stay. Very memorable.

We have been enjoying life to its fullest, celebrating birthdays, even getting pampered at a spa treatment we got from our friends back on my birthday in December, which we hadnt been able to redeem until now (thank you so much it was wonderful!!). I cannot thank you, our family and friends and well-wishers enough for all the support you have given us, your kind words, generous donations, food deliveries, and thoughtfulness.. To all those who organized and participated in a Poker tournament fundraiser for our cause, you knocked us off our feet, we THANK YOU!! All this has made our lives so much less stressful, and most importantly has given us the comfort that we are not alone.

Anddddd... now.. planning a vacation?!

Had you asked me a month ago if I'd like to go away, I would automatically say YES but we can't right now.. This has been my answer for the past 2.5 years, and the reason we havent been away. Unless you count our trip to Florida, which was beautiful, but not your typical vacation.. We went there in a desperate attempt to heal my then newly relapsed cancer by alternative approach (switching to a raw living food diet, etc); This trip sadly ended with an emergency flight home - I went straight to the emergency room and immediately started high-dose chemotherapy in hopes of stem cell transplant shortly after..

It has routinely been hard for us to plan anything even a day in advance, and either my frail condition or frequent hospital appointments, or medication I was taking, has prevented us from travel. But on June 1st, exactly one year to the date that I had my autologous stem cell transplant, it felt possible. A huge THANK YOU to my parents for a Christmas present that went unused until now - a much needed vacation :) We saw a 10-day window of opportunity, a beautiful destination, sun, sand and relaxation.. Needless to say we are thrilled !!!

Tomorrow morning we leave for Jamaica !

Finally Karolek will get to use his snorkel gear for a body of water other than our bathtub :)))) We feel so blessed and happy at this moment.

Thank you for sharing in our journey. Pictures from the trip to follow!!

Second round of SGN-35

So many of you have been asking, and I hesitate to jump for joy, but rather knock on wood when I say I have been doing much better after my first treatment back in April, nearly 3 weeks ago.

A round of this targeted chemotherapy, which is administered each time in Rochester, is 21 days. And so this week is already time for the second round of SGN-35.

On May 1st we had a very emotional day. Our beloved Pope John Paul II, born Karol Wojtyla, was beatified. In our hearts, he was always a saint - we had been witness, first hand, to his miracles. On this day it was official.. I explained to Karolek in church that sometimes adults cry happy tears. I think he understood, but thought it was a silly concept at the same time ;)

In front of the church, May 1st, 2011. Beatification of Pope John Paul II

My fevers went away within about 24 hours on this drug (they were gone by Sunday, I got the treatment on Friday). I look and feel better, gained 5 kg much needed weight to build back strength. I have had low energy and fatigue, and regular visits at the clinic here to check blood have helped with this -- I get blood transfusions when needed to raise Hemoglobin levels and as the doctors say, 'top me up' (like gas in a car, keeps me going).



At the clinic, waiting to go home after receiving a blood transfusion.

Racer Karolek (taking after daddy) visits me in full gear.

Overall, I have been smiling more, able to meet with friends and loved ones more often, and enjoying the recent warmer sunny weather, even if I'm just sitting and sunbathing in our backyard while Karolek plays :))) This past weekend was busy and though I was asleep by an embarrasingly early evening (in bed before my 4 year old son), I was able to join Konrad and Karolek at a friend's son's second birthday party, meet with friends we hadnt seen in a long time, and to be out and about with family for Mother's Day. It was a great Mother's Day weekend. Every moment with Karolek is very special to me and this year I am very thankful.

Spring in Oakville

If all continues to go well, we go to Rochester this Thursday to get the second round of SGN-35. We do bloodwork here the day before leaving to cut costs of doing it there, and they are cooperating with this which is nice (I just need to present a print-out of my blood results to the doctor I see there before the treatment).

For anyone who is interested, there are forms under the Ontario Ministry of Health website for a program called 'Prior Approval' with which you apply to receive funding for OHIP insured hospital and medical services out of country. Having just found this, we are trying this, however, it usually doesnt cover treatment with a drug that is 'Experimental', as this one is at the present time. We will see what is decided..

Hope all you moms had a wonderful Mother's Day and I will write again soon,

Paulina

Happy Easter

I feel so truly blessed and so happy to write that we got the drug in Rochester. Prayers have been answered.

It wasnt easy and we didnt have an answer on Thursday. We were booked in for an appointment for Friday at 2pm to get the drug in case the answer came back yes.

Konrad was a superhero on this trip. He managed to keep a 4-year old smiling and entertained despite the boring nature of the trip  (two days spent in a cancer center after a 3 hour car ride). All the while wheeling me along in a wheelchair, and taking care of me as I was on my last drop of energy the entire time. Just feeling miserable. My fever reached 41 C, highest it has ever been, during this trip.

We stayed the night in Rochester, were called back first thing in the morning by the center because some bloodwork had to be repeated -and the company was waiting for this to make some decisions. Then more waiting.. the doctor was still in talks with the company half hour before the scheduled time of treatment. We were still in limbo, still didnt know what the answer would be. Then we got the news we were hoping for, and tears of joy.. I got my first infusion of Brentuximab Vedotin (SGN-35).

And now we humbly wait and see and hope for improvement.

Sending all our love to you this Easter.

Paulina, Konrad and Karolek

Today at 3 pm

There has really been no good news to share and that is why no posts have come until now. No time to write in detail, but I have stopped taking Crizotinib and since Monday I have needed to have 3 transfusions, for low hemoglobin and platelets. My energy level is extremely low, stairs are again a challenge, I have shortness of breath.. and of course the fevers continue.

We venture off this morning to Rochester, NY, where there is a trial center that may be willing to grant me the SGN-35 drug on compassionate grounds. Key word is 'may'.

Please cross your fingers, pray, send positive vibes our way, today Thursday at 3 pm. At this time I will be meeting with a trial doctor there who will assess me and hopefully have mercy..

With an open mind and more optimism than we've all had in weeks, I sign off,

Paulina

Waiting game

Since returning from Chicago (and I attach my two favorite pictures from the trip; from when we visited Rainforest Cafe), things have been a bit crazy.

Karolek is down with a stomach flu since last Friday :( Poor little guy has tummy pain, cant keep food down and even fluids is a challenge (but we're forcing him to drink lots so he stays well hydrated). Vomiting and diarrhea.. And he's unfortunately joined me with the fevers - so now its two of us to track with the anti-fever meds. But we're so proud of him, knock on wood, but he hasnt been sick in as long as we can remember, and this little guy is a TROOPER! So brave. Doctor said it just needs time to pass, so all we can do is wait. I hope he feels better very soon.

On the other hand, my last visit with the oncologist also has us sitting on the fence this week, waiting. Well, I'm still taking the increased dose of Crizotinib as well as the prednisone (75-100 mg daily now!, third week); but we're waiting for information -- to decide what to do next.

Basically the drug navigator at the hospital is going to look into the other two drugs that the doctor in Chicago recommended, for efficacy in my particular lymphoma. Off the top of his head though, my doctor didnt seem to think they were particularly effective in anaplastic large cell lymphoma (ALCL) :( But at least this is being looked into.

My doctor is also looking into the possibility of getting the SGN-35 drug here in Canada. (http://www.fiercebiotech.com/special-reports/10-promising-late-stage-cancer-drugs/sgn-35-10-promising-late-stage-cancer-drugs).

I will update more after my next clinic visit on Friday. Going to take prednisone, temperature coming up already and its only been 8 hours since the last dose.. Dont want to let it get up to 40.1 C (as it did yesterday, and wiped me out for a good portion of the day)..

Remaining hopeful.
P