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..
Much love,
Paulina
Paulinko, trzymaj sie kochana.. zawierz Bogu a ON juz sie Toba zaopiekuje. Jestes cudowna.
ReplyDeleteI'm SO happy to hear that the doctors have increased your dose to 350mg twice a day!:) That in itself is a success! Every person has some amount of luck on their side, and on top of God's love and guidance over you, I believe in your overcoming this once and foreall! Goodluck in Chicago, I have you in my prayers as always!
ReplyDeletePaulinko sliczne zdjecia i sliczne usmiechy:)
ReplyDeleteJestes niesamowita cudowna osoba:)Tak bardzo godna podziwu!
Juz nie raz udowodnilas nam, sobie i lekarzom(pomimo ich roznych rokowan) ze jednak jestes silniejsza!Jeszcze nie raz beda drapac sie w glowe....:)
Wiara, nadzieja, milosc...
Wierze ze jestes ulubienica naszego Papieza,Jana Pawla Drugiego:) Takim pupilkiem - ulubionym uczniem:)Uczniem ktory teraz nas uczy jak zyc i dodaje sil.Jan Pawel Drugi doda Ci tych sil i nigdy nie opusci!Paulinko Twoj optymizm, wiara, sila,milosc wokol, oraz opieka Boza i Jana Pawla Drugiego sprawi -ze znowu zaswieci wam sloneczko i zagosci w waszym sercu.
Tego zycze Ci z glebi serca!
Szybkiego powrotu do zdrowia.
Lots of love!
S.M.
paula, im sooo happy about the increase in the medication!!! talking to you the other day put a smile on my face all day, because you inspire greatness and your strength is immeasurable!!! One good news after another, this trip to Chicago will aswell, and we will plan a nice kiddie playdate very soon...snow, rain whatever:) On layovers we stay on michigan Ave and Ontario Street...nice street for shopping and a beautiful cathedral aswell. The have on 717 Michigan one of the biggest Disney Stores i have ever seen...im sure Karolek will like it, they had a big BuzzLightyear on display in the front a few weeks ago when i was there. Also hopefully your appetite is thriving, also on Ontario Street Sushi Taiyo and across the street from it a Mexican restaurant. Much love and all my prayers on this trip and always. safe travels my dear for you and your boys Luv Marianna
ReplyDeletePaulino, wieze ze poradzisz sobie z ta choroba!
ReplyDeletePozdrowienia dla Buzz Lightyear i Konrada.
Myslami jestem z Wami.
Grzesiek aus Hamburg
Czesc Paulina,
ReplyDeleteCiesze sie ze czujesz sie lepiej i ze lekarze pozwolili zwiekszyc dawke lekarstwa, oby tylko wszystko dobrze dzialalo i nie bylo zadnych powiklan...zycze powodzenia w Chicago i podaje link do Chicago akwarium, swietne miejsce dla dzieci i nie tylko, moze akurat uda wam sie odwiedzic....www.sheddaquarium.org...pozdrawiam...Kinga
Paulinka, Konrad i Karolek...czekaja Was jeszcze wspaniale chwile jako jednostka. Bedzie dobrze! Macie niesamowite wsparcie od swojej rodziny i przyjaciol, a nawet obcych ludzi, ktorzy przez Wasze przezycia, decyduja sie zostac z Wami w myslach, modlitwach i prosbach...przesylamy gromy pozytywnych mysli i modlimy sie zawsze!
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ReplyDeleteShedd Aquarium would be the thing for Karolek.
ReplyDeleteGood luck!
Agnieszka
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