Month: October 2008

Peter and I returned from NY last night. It seemed like a pretty quick trip this time. We left the snow in MN and arrived late Sunday night, but not too late for Peter to want a little “before-bed snack” – if that’s what you call a caesar salad, bread and manicotti! That is one of the things we love about NYC – nothing closes, or at least not until really late! And while we try not to get too carried away, what Peter wants in New York, Peter gets in New York. When you see first-hand what these kids endure on a regular basis, it’s hard not to spoil them a little.
I should also mention, since many of you have asked, that Grandpa Brian’s surgery went well and they got all of the cancer, so no further treatment should be needed. In fact, Grandma & Grandpa took the girls north with them after Great-Grandma’s funeral, which I thought was rather brave, since Grandpa was still moving pretty slow! Anyway, they came back last night and were excited to show us the pumpkins they carved, all their paintings, etc. I’m really not sure what we would do without our entire family…thank you to all of you!!!
Peter had the routine testing this round, with1 addition. He had the physical exam, with blood work, urine analysis, etc. CT scan – head, neck, chest, abdomen, pelvis, MRI of the brain (addition), MIBG scan and bone marrow biopsies. The results of the ct’s, mri and mibg and are all clear…words we will NEVER get tired of hearing! We will find out bone marrow results and a few other things next week. They also tested him for HAMA while we were there & he’s still positive, so we’ll draw blood every 2 weeks to see when he becomes HAMA-negative, and then head back for 3F8 treatment.
Since the cold, rainy weather followed us east from MN, we didn’t get out too much this time, but we had fun in the Ronald McDonald House playroom and we attended a great Halloween party there on Tues night, complete with dinner, cupcakes & ice cream, games and trick-or-treating for the kids (NY style – indoors!) We’ve probably mentioned before that the playroom on the pediatric floor at Memorial Sloan Kettering is second to none, and someone had donated costumes for all the kids, so Peter chose a Superman one and now he has 2 for this year – Superman and Blue Ninja Warrior. He’s so excited for his school party tomorrow and then trick-or-treating with sisters, cousins and Grandpa Sig! (I’m excited that it’s going to be 65 degrees again tomorrow!) Ellie is going to be a kitty and Kate a bumble bee  HAPPY HALLOWEEN!!!
Hockey started last weekend so that’s the other major excitement here! Peter and Ellie will be on the same team along with our friend Jake, and the kids can’t wait for their first “real practice” on Saturday! They’re also fired up about Uncle Tito’s new rink and being able to log some extra hours there.
Last but not least, a great big “YES!” for the Warrior Princess (Mary) on her first clean bone marrow scans… this young lady is absolutely amazing, juggling a very demanding college schedule while on chemo. Mary and her family so deserve this wonderful news!
And please, please keep little Ella high on your prayer list…she needs a miracle! We are so sad about the road that she, John, Erika and Caden have to face.

Once again, it’s been awhile since our last post! Life definitely hasn’t slowed down, but as the saying goes, “no news is good news”! There have been lots of “big events” recently; i’ll try to recap here…
– First, congrats to Uncle Matt and Auntie G on the very early arrival of Briley Lawrence, our beautiful new 3-pound, 9-week early little neice/cousin! She’s doing great. We’re pretty sure we induced labor by living with them for so long (or at the very least, we prepared them for a more hectic schedule with kids?!) We’re very happy she’s doing so well and hopefully she’ll get to go home soon!
– Kate has decided that she doesn’t really want a birthday in November, because the “nuk fairy” is supposed to show up on her birthday to take her nukkies away. We NEVER thought Ellie would go for that when she turned 3, but she did great! Kate, however, was 9 months old when cancer took over our lives! While she has always been very well cared-for, she was just a baby, and she definitely gets the baby treatment in our family! The idea of the nuk fairy hasn’t gone over so well, until now. We may have struck a deal now that we told her, “maybe baby Briley will need a Nukie!” I think the birthday is back on…
– I will never forget just over a year ago, when Peter came off the ventilator in NY. Uncle Matt was with us in NY and it was such a production. There were still so many tubes, cords, lines; you could tell the doctors and nurses really prepared themselves for these things, we all had to leave the room as sometimes patients cannot make the switch to room air and need to be re-intubated. Peter did well, and we got a call moments later that my Grandpa Art had passed away in Mpls during an Angiogram. I think those 2 things happened simultaneously and Grandpa was giving Peter his last breath to help Pete breathe on his own again. This morning, just over 1 year later, Grandma Marie went to be with him. Auntie Meeses and I were able to spend yesterday with her and we are thankful for that.
– Peter is doing great. He did have the Rituxan / Cytoxan treatment a couple of weeks ago. He had 1 full day of Rituxan, then a repeat of that 2 weeks later, then Cytoxan the following day. He did great with the pokes, and then one of the nurses asked him if he wanted to play the “Wii” (sp?!), so he had a lot of fun with that while getting the infusions. Had a lot of nausea the day following the Cytoxan (chemo), but has felt great since. He didn’t lose his hair even though he told Uncle Troy that he lost some of it but it came back in overnight. That’s good because he was getting nervous about losing it. He asked me if he could just tell his class that he got a haircut if it started falling out!
– Last Thursday Ty took Peter to the U before school to check his counts, and also to draw blood for a HAMA test in NY. Unfortunately, we found out this week that he is still HAMA-positive. But it can take a couple of months for the HAMA to come down (after the above regimen to try and bring it down)
– Given that, Peter won’t be getting 3F8 treatment immediately, but he is due for scans/tests again so we’ll head east on Sunday the 26th. He doesn’t care that he has to get poked & prodded, sedated, etc as long as we’re back in time for Trick-or-Treating, which we will be!!!
– Other than that, we are settling in to life in Apple Valley!
– My Dad’s surgery is Monday, so we appreciate your thoughts/prayers for good news there!
– Thinking of all our friends fighting this dreadful disease…