This site is made for Paulina who is battling cancer for many years now and is often hit with many other health problems associated with her treatments. She is 29 years old, a mother of one child and a loving wife.
Noticing it has been awhile since an update.. We are all doing pretty well (besides seasonal flu here and there), especially true for me compared to where I was this time last year - about to be re-admitted to hospital with an aggressive relapse.. At a loss for words, truly a miracle the way things have turned out since then, what greater gift than the gift of time - and TIME is ultimately what the 'smart' drug I'm on now has given our family in 2011. I personally know how thankful I am for researchers who never give up on an idea!
I had treatment number 12 last week in Rochester and this leaves 4 more treatments in the new year. Until then we wait and see. We dont know what will happen once we reach the end on this treatment which has until now been controlling the disease. Unfortunately 16 cycles of SGN-35 is the maximum on this clinical trial, but we are happy with how it has gone thus far, and our faith is strong. I will write more about possible next steps in later posts, we have been thinking about this, but I wanted to make this a short and sweet post - in the moment, things are good and we are happy for this :)
It is such a joy to see Christmas through our son's eyes, this year he's almost 5, and he has been counting down sleeps until Christmas. He cant wait to leave cookies and milk for Santa, and did most of the writing on a letter to Santa this year thanks to writing skills he's picking up in Junior Kindergarten :) As much as he likes his teacher and friends, he is excited for a 2 week break from school though that comes at Christmas time. We are too.
Merry Christmas!
During this joyous season,
may you be blessed with
the spirit of Christmas which is PEACE,
the miracle of Christmas which is HOPE,
and the heart of Christmas which is LOVE.
Wishing you and your families good health, and many happy moments in 2012,
I couldn't have asked for a better birthday, from start to finish.
Thank you to everyone for your wishes, for celebrating with me in person and in spirit. I am beaming with joy and the love I feel from you continues to give me strength to move mountains.
THANK YOU for making me feel so special as I enter my 30s :)
Paulina
Wednesday, November 30, 2011
We are celebrating Paulina's 30th birthday at Fregata this Friday (2 dec, after 9pm) Please feel free to come over to share this amazing moment with us and to have a bit of fun. We all know what she went through in the past 3 years so the reason to share the moment of happiness with her is even more special. "Lets Celebrate Life! :)"
I guess I spoke too soon, wishful thinking but turns out were still jumping through hoops trying to get the drug here. After many hours my team here at Trillium has managed to get Health Canada approval but with a catch -- that insurance (OHIP) won't cover the ~$10,000 drug cost of SGN-35 (per treatment!)..
So after all the efforts turns out right now its cheaper to continue getting it in Rochester where the drug company Seattle Genetics has been taking care of the drug cost for Canadians since it went to market Aug 19 (each of the US patients' medical insurance has been covering 100% of drug cost from day 1 it was on market).
I am just so frustrated with the system that there are still problems getting the drug to patients here.. Dont even want to imagine anyone else right now in the kind of life and death situation as I was back in April, desperate to get this drug.. Just cant imagine them being told they can get the drug but its not covered.. No one has $100,000+ lying around to pay for the treatment that I have had already. Very sad.
Besides the drug cost, we are still hoping to change OHIP decision denying us our out of country expenses (averaging $1500 per visit - for infusion itself & doctor fee). I have a telephone pre-trial hearing sometime early December with an Appeal Board. Myself vS Ohip. I get to plea my case, hopefully they will see the potential this drug has to save lives and agree to pay for it as they would for any other accepted treatment.. Wish me luck.
So for the 11th time now, we venture out tomorrow 5am to get another half hour infusion of the drug.. Exhausting trips but realizing more and more how fortunate I am to be getting it at all!
Happy Thanksgiving this week to all who are celebrating,
Hard to believe it's been half a year since that life altering first dose of SGN-35.
Possibly the last time we travel here to get it as arrangements are being made back home to get the drug there under care of my local oncolgist. Rochester Strong Memorial will always hold a special place in our hearts. On behalf of our family thank you for all you do.
We have been carrying on with everyday life trying not to think too much, and are thankful for how things are at the moment.
We all started focusing on a healthier lifestyle.. juicing daily, and taking extra vitamin C and D (in flu season) and probiotics. I have also started taking minimal doses of B17 (in the form of 3 apricot seeds daily) for the proposed anti-cancer properties.
And part of changes in lifestyle, I am overjoyed to actively be a part of Karolek starting school. I cannot tell you, I personally have shed more tears than our son as he starts school (actually he has surprised us and hasn't cried once and I have every hope that this will not change). Very emotional time for Konrad and I, seeing our baby start the school career, starting a new phase of life. This on top of the general September blues - end of summer, weather changing..
It is impossible to ignore the neck nodes which remain eerily present. Looks like a stable but partial remission is new term being used to describe where I am now. Luckly this doesnt really reflect how I feel, even I am fooled sometimes, because knock on wood, at this moment I feel very well. As many of you well know, I have been struggling with what to do ever since Washington, but only recently decided to opt out of transplant for now, with the doctos backing, and with good reason.
I will carry on with what is controlling disease for now (SGN-35). It feels like there is no right or easy path. Your patience with me is greatly appreciated, I have had a few friendly reminders to write more frequently.. And I appologize I have not, but its not always easy.
Good news that has come to all HL and ALCL patients out there since I last wrote is that SGN-35 wasFDA approved on August 19, first drug for relapsed lymphomas to come to market in 30 years. Market name for Brentuximab vedotin (SGN-35) is Adcetris. They are still working out with Health Canada the 'special access' program to make the drug available to Canadians, so for now we have to continue going to Rochester for treatment every 21 days. But it looks like patients can soon get it here. What is strange is that it is already being provided in UK, and it feels like we are the last to get many of the clinical trial drugs out there today. No point in dwelling on this, but it does frustrate me to see that in some major aspects of health care we are so often really trailing far behind other parts of the world.. I am in the midst of appealing the OHIP decision not to pay for our out of country expenses that have been accumulating for awhile now, for a drug that is now 'accepted' in Canada.
On a much brighter note, this September has brought us our 6 year anniversary of marriage. And we rejoice, with the sun shining again these days :))
Much love and thanks to you for your constant concern and support and being part of our lives.
We got home safely at 4am after a long 10 hour drive late into the night. Taking it easy today. Karolek was a trooper, what a kid, felt so bad but we were literally shaken, and decided to go home right after the NIH building was evacuated at 2pm Tuesday --5.8 earthquake had the entire building shaking around us.
Karolek wearing 'to the rescue' shirt as we sit outside NIH,
immediately after earthquake hits Washington area around 2pm.
What a feeling, we were on the 12th floor after I had just had an ECHO cardiogram, waiting to talk to another lymphoma doctor before we were all done, and then suddenly we found ourselves escaping down the emergency stair well when we felt the walls shaking and ground beneath us rumbling.. If anything we were reminded of how fragile we all are, and couldnt help but wonder what sort of sign this was.
Video: Aftermath of earthquake, in front of Clinical Building, NIH
Oddly enough, right as I was on my way into my auto stem cell transplant last June 2010 at PMH, we were out on the streets in downtown Toronto, and it was small but the ground shook beneath us. Didnt think much of it -thought it was a subway. Went into the hospital and they said it was, in fact, tremblings of an earthquake that were felt. Much weaker then, but how significant, that we were now closer to the epicentre of a quake, feeling it much stronger the exact day we were putting our first foot in the door for an allo transplant (much riskier of a procedure). Messing with nature comes to mind? Cant help but be stopped in my tracks and wonder.
We obviously havent made any decisions, I personally cannot grasp the gravity of what just happened. What it means, but I believe the cards will unfold and it is in the hands of God what happens next, and believe He will show us a way that feels right in moving forward.
Just wanted to update and post that we are alright, back home.. At a loss for words, so I end at that.
So much has happened since the last post, essentially since receiving the 5th round of SGN-35. The day of that treatment, we got home and my neck lymph nodes were swollen, along with a sore throat and difficulty swallowing. Normally, one wouldn't think too much of this (Konrad also had similar symptoms from changes in temperatures, extreme humidity outside and air conditioning everywhere else); but with me red flags were immediately raised. CT scans, blood work, restaging. I am trying not to look too much at any of this (though its hard), and be cautiously optimistic that it will just pass.
Antibiotics started shortly after round 5 helped to shrink these lymph nodes (and take away the sore throat I had along with it), however a week later they popped up again :( I am now back on the amoxicillin and will remain on it likely right up until the next treatment. We were in Rochester last Thursday Aug 11 and luckily got round 6 of treatment, however with a warning that I will not receive round 7 in 2 weeks, if the node swelling is not resolved by then.
Dilemma strikes again. We wait and see, and I am in the process of trying to get around the treatment maze we unfortunately have in Canada, bending over backwards in trying to arrange for back-up treatment (proposed drugs are Romidepsin and Pralatrexate). They are FDA approved but only available in US, and not being insured for medical expenses out of country makes it impossible to afford Romidepsin for example, costing $10,000 USD weekly for drug cost alone. Sadly, the patient is left with researching into ways to get around this. Will update on progress. All I can say is without the strength I gained up until the fifth round I would not even be able to do so.
We are still hopeful that this will resolve, and continuing on SGN-35 with a remission will keep the door open for an allo (donor) transplant.
We are being seen at National Institutes of Health (NIH) in Bathesda near Washington this Tuesday August 23rd :) They may also propose alternate treatment if in fact needed in 2 weeks time for conditioning to get into a trial they have there specializing in allo stem cell transplant (sct) after failed auto-sct. I am very thankful to have been referred for consideration there, since being enrolled in one of their trials could mean having the transplant done on NIH funding. A huge deal, especially considering there are no programs available for me to do this procedure here in Canada. We leave tomorrow morning, 10 hour drive ahead of us, but we are happy to have this opportunity so will make the very best of this trip.
Besides all this craziness, we're just continuing on with the new 'normal' we call everyday life. We have been trying to meet with people whenever we get the chance, and have enjoyed visits with some friends whom we havent seen in far too long, how refreshing and warm a feeling that brings. Happily enjoying the summer, and breathing in the fresh cooler air up north most weekends with our family.
We watched the Cars 2 movie that I've been looking forward to seeing ever since I was in hospital back in January and heard its coming out. Karolek spent his two-s and three-s were living and loving CARS. This kid has a McQueen toddler bed he sleeps in to this day, and was Mater for his third Halloween. Happy to report his love for the movie and characters is reborn :) (though we thought it was disappointingly not as good as the first).
We also had a fabulous time at our friends Kat and Carl's long-awaited wedding yesterday! We were delighted to be part of it, and dance the night away in great company, family and friends all with a unique dress code: ladies in pink, men in black - so fun and unique. Thank you for a great time!
We hope summer has been good to all of you, that you've found the time to sit back and relax, and take in the moment.
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.
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).
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!!
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,
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.
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,
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.
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)..
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
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.
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.
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 downin 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.
Sorry for not updating sooner, things have been a little hectic. Since my last post, I was moved from my nice room in Oncology (which was in the new wing of the hospital), to Rehab (not so luxurious much older, shared rooms, etc). This move was for a number of reasons, the Oncology ward is for acute care only, and on this drug I was looking better and better, off IV more often as the transfusions were getting farther apart (one to two per week). So home or rehab were the options, and given I had just started walking again and wasnt ready to get up a flight of stairs at home or keep up with the energy of a four-year old, rehab it was.. They assessed me and I was assigned to short-term rehab.
Having realized I had spent all of this new year, 2011, in hospital so far, rehab was a nice change that came at a good time and brought a feeling of being close to home. The general feeling on the floor was "if you work hard and do your physio, you will be that much closer to going home". Even though its hard work, and frustrating at times, the more you practice and work on yourself, the easier it gets. Each and every day you see improvement. And that was the way it was, in everyone you could see the underlying HOPE, the excitement that the next stop was home. Not like that in Oncology, there one sees a general sadness, feeling of uncertainty; harsh reality is that its a hit or miss with cancer, with each individual..
So after a week in rehab, the plan was to go home this past Friday Feb 18th. The entire week, actually 10 days total, I couldnt have made my oncologist more happy, I had no blood transfusions (due to low hemoglobin in red blood cells) or platelet transfusions (without platelets blood doesnt clot and excessive bleeding and bruising can occur). Being transfusion-independent is one of the signs that the drug is working. This implies the number of cancer cells in the bone marrow, that were preventing it from producing the blood cells and platelets on its own, are decreasing. Less cancer cells means less transfusions needed; all thanks to the drug :)
HOWEVER, discharge day, Friday, I had a blood draw at the usual 6:30 am. My 54th poke since admission (blood taken daily). To my great disappointment, just as Konrad had finished taking all my belongings from my room to the car, the nurse said my hemoglobin was low today and she needed to hear back from the doctor before she could discharge me. An hour later, waiting around with Karolek, who was happy with the playtime with me but anxious to take me home, I got the news. I had to stay for a "top-up" before the long weekend. I needed a blood transfusion. I walked Karolek down to the car where Konrad was waiting with our dog Pepsi.
Lucky for me, Konrad is always good at distracting Karolek and kept him busy through the day, and my little guy didnt think twice about what had happened, and wasn't sad I would be home a day later. I am so thankful because all day my heart was breaking and mainly in the fear I had disappointed my son.. again.. But it was all in my head, and maybe I needed a day to go back to an (empty) hospital room and cry in self-pity.. Now I can laugh at myself but at the moment, looking out the window at the beautiful +10 C sunny day outside in February!, it was the worst thing that could have happened. A chain of other mishaps later, the blood finally arrived but not til 8 pm, and the transfusion ran through the night until after 3 am.
Saturday morning, waking up exhausted from the countless vitals checks the nurses did during the 6-hr transfusion, I had a much better mood. I told Konrad not to come get me this time until I was already out the door. Sure enough, there was another problem and I feared I would be stuck over the long-weekend due to hospital policy. Luckily the nurses were able to contact the doctor that was on-call to write me a new discharge order (the one they had for Friday had gone void when the transfusion ran past midnight -they hadnt thought that one through!). So I was free to go, and I WAS HOME EARLY AFTERNOON SATURDAY :)))))
Big adjustment, but ITS GOOD TO BE HOME. We went to church today, and there was a show on for kids after mass, and it was so nice to watch Karolek participate and take pictures with the actors afterwards :) He sat eagerly through the entire preformance and when he came home he wanted to put on music and dance like the actors did (he especially loved the 'pretty lady' actress that danced with a ribbon in hand to a fast-beat song and made the puppet wicked witch start dancing and promise to be good from then on). Beautiful message in the show: in DANCE, love, laughter we find the medicine that will turn evil into good, that will heal all pain.
Karolek with Actors after the show
Happy Family Day everyone. Hope you spend it with the ones you love.
Hello. Paulina here :) I was slipping away there for awhile.. I thank God each day for where I am today. I have been taking my 'Angel' pills, as I call them, for 2 weeks now. Why Angel? They are three pills that come shaped as two ovals (wings) and a circle (halo). Three magical pills that I take twice a day. And they have helped.
Within 48 hours of starting this drug, the fevers that have drained me every single night for the past 2 months, were gone. My cough, which I had since September, was gone after about a week. I was given a new life.
I have been catching up on much needed rest, sleeping 12 hours at night and taking naps during the day. The challenge now is regaining strength, as having been bedridden for the past month took its toll on my muscle (non-existant). Good news is, since starting the drug, my weight is up from 38 kg to 42.5 kg today. Appetite is great, my head is clear again and what more can I ask for. It will take some time to bounce back, but I am happy to now be doing physio here at the hospital. Each day I walk a little more.
This past Tuesday, February 1st, our son Karolek turned 4. I realized as we were celebrating when he came to visit me at the hospital, that had his birthday been 2 weeks earlier, I would not have been there mentally. I realize only now what bad shape I was in, I dont remember things: for example a nurse came up to me and I didnt think I knew her -she said she took care of me while I was very ill. I have no recollection of her at all. A very scary thought. I was on so many drugs, but also the fevers just wore me out.. The cancer in the bone was progressing fast, and I was literally slipping away. But on my son's birthday, what a reward that I hung on.. and the drug arrived. What a joy to see him so happy and to be able to hug him tight :)))))
Thank you all for following up on my condition, your support, kind words, and messages have meant so much.
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
Yesterday at 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 thatJohn 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!!!
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
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
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!!!
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 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!
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.
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 ;)
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.
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 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%
