Well, I still have my little butterball. She stopped steroids Tuesday but her appetite hasn’t let up yet. The Vinchristine is also giving her bad legs pains so no one is sleeping. Suz spent the first shift with her and then she handed her off to me at 4am and I stayed up with her after that, rubbing her legs helps. We got some Codeine Tylenol per doc’s orders and today she seems more amenable. Hopefully tonight she will get some zzzz’s.

           Rick the nurse came to do a blood draw in the early am and so did the plumber to fix our furnace that conked out at night when the temp hit 2 degrees (of course, it never breaks when it is 75). So the plumber wanted to discuss local politics with me as Rick the nurse pulls out Malena’s access needle – and blood starts running down her chest! He wasn’t ready so he had no gauze and Malena is rightfully freaking out (as are Suzanne and I). We finally get pressure on it and but it would not clot, every time he moved the compress the blood just kept coming – I guess because her platelets are getting so low (now at 60,000). He swears he never saw this before and ten minutes later when it did stop we all were able to breathe easier. She has a nice purple bruise from the pooled blood and Suzanne, who soaked up the spillage with her own shirt, looked like she got gunned down with rapper Biggie Smalls (may he rest in peace – East Coast rules).            

My folks, who flew back to E.A. from Florida for a month to help out – in January God bless ‘em, watched the kids last night so we could meet the gang at the Roycroft for Caribbean night. Food was very good, drinks were cold, fun times had by us, and next time I will not wear flip flops in the snow. Today, the big kids played in the snow, we made a snow man, Mackenna made a snow dog named…“snowy”, I thought we should have named her “Flakey”. (Mackenna not the dog) And Tony had his first sleep over at a friends home, he had a great time at the George’s house and when I went to pick him up, I wiped out like a jackass and the kids pelted me in the face with snow balls while they all laughed. (Just like when I was a kid, except now even five year olds are picking on me)           

It is 9:37pm and Malena has been sleeping for an hour so I am getting optimistic she is feeling better (or I misread the dosage for the Codeine Tylenol), either way we may get a good nights sleep tonight. Hopefully her numbers will start back up before her big chemo regimen this coming week.            

Thanks for keeping us and especially “Baby Doll” in your thoughts, it helps us to not feel alone in this.           

Pete 

ps. Our friend Mary Keough is riding in the Leukemia & Lymphoma Society Century 100 mile Bike Race this fall; please let her know if you want to sponsor her for this very worthwhile L&L event, at   This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . Here is a quote off the society’s website that really struck me:   “Jonathan Gauder, age 24, has already had the opportunity to find out just what he's made of. Earlier this year, Jonathan ran a marathon as part of Team In Training. Running in honor of his 5-year old cousin, Brian, diagnosed with leukemia, he had the words, "All for Brian" printed on the back of his jersey. About 25 miles into the arduous 26.2 mile run - almost there - dizziness and a sense of desperation overwhelmed him. "I hit the wall physically and mentally, and didn't think I could possibly keep going." Just then, another runner passed him, calling out, "I bet Brian appreciates this. He'll keep you going. You're almost there." In that moment, Jonathan said, he was jumpstarted - suddenly he felt new strength and motivation, thoughts of Brian fueling his heart, his spirit and his legs. He crossed the finish line with tears in his eyes.” 

Hurray!!! The Steroids are DONE!!!!  Malena took her last dose tonight before bed and when I tipped the container over so that she could see that there were no more pills she gave me the biggest smile ever!  I live for those smiles now because those steroids just knock the happiness right out of her.   

Malena has had a pretty rough week.  Her counts are dropping and she has a pretty nasty rash on her behind.  VERY painful!  She has topical meds for it but if things don’t improve soon we need to take her in to the hospital.  Of course this is the week that she has off from chemo but we may have to go in anyway.       

There are about 4 more weeks left for this phase of treatment.  Then Malena begins the maintenance phase which is the final phase and lasts for about 20 months.  Things should get easier for her then.  She will have to take steroids again every 4 weeks for 5 days but the dosage is half of what she is on now so hopefully we won’t see many side effects.   

We finally have snow in Buffalo so we had to put away the shorts and break out the sleds.  We went a couple times last week and Malena loved it but only wanted to go down 2 or 3 times.  Then she was happy just watching her siblings have fun.  She loves being with them.  The other night I checked on her at around 11 pm and she woke up but the first thing she said was ‘I love my sister’ and I said ‘she loves you too’ and she said ‘she is so beautiful’ and blew her a kiss.  I bent to kiss her bald head and whispered ‘you are so beautiful!’ She is the sweetest little girl and I love when that sweet little girl fights her way through the steroids and drug induced moodiness and we get a glimmer of her!  

Hopefully a week from now we will have her back and her energy too! 

We’ll keep you posted! 

Love, Suzanne