Back in Room 4

One of the convenient things about your child having cancer is that when you pull up to the "Paramedics Only" parking area directly in front of the Pediatric Emergency Room, the security guards do not chase you away. And, since it would be very dangerous for a neutropenic* kid to sit in a waiting room with potentially sick people, the hospital staff immediately whisks your family to a private room. They call it an 'isolation room' but sounds a little scary to me and I like comparing Hackensack University Medical Center to the Ritz Carlton, so to me it's a garden view superior room with 3 meals a day plus a minibar stocked with Gatorade, Kozy Shack pudding, jello (mom does not go near gelatin!!!) and fresh bagels. It's our third time in the ER since February 11. Sylvie said, "Mom, can we go upstairs to the big bed and TV?"

The oncology kids are admitted two ways: If it's early, we can go to the Reuten outpatient clinic. If it's after 4 pm, we have to go the through the Emergency Room. This has been our route all three times. Despite what I imagine to be lots of children entering via the ER, we continue to be amazed that the staff appear perplexed about accessing Sylvie's port. The head nurse in the ER, Joanie, worked in pediatric oncology for 5 years so we completely trust her. She inserted the upper and lower port needles while the other nurse looked on. Joanie left for the day and we were left in the shaky hands of two nurses far less experienced. After they drew blood twice, the upper port stopped working which is not uncommon. Sometimes a little blood clot forms like a little flap inside the port. Hence, you can get fluids in but cannot get blood out. Or the whole thing gets blocked. We had been told to expect it.

However, the last thing you want is to overhear is nurses talking each other through the procedure before trying to stick pins through your kid's chest. Sylvie had Michael pinned to the bed and he looked like he was going to have a heart attack as the nurses talked themselves through the procedure while they hid behind the curtain. I went outside and told them it wasn't happening. Before leaving the house, I had asked if a nurse from the Reuten outpatient clinic could come but they were gone for the day. I asked for a nurse from Ped Onc to come downstairs but they were unavailable, too. Trust me, they were plenty happy to not have to go near Sylvie and her port. We refused to let them reaccess her port in the ER since Sylvie was getting admitted anyway. Finally the ER attending pediatrician, Dr. Nina Gold, came by and told them to administer tPA. tPA, tissue plasminogen activator, is a thrombolytic agent better known as a very expensive clot-busting drug. Handy fact, tPA costs over $2,000 PER DOSE! They tried it twice over the next two hours and it did not work. We watched Dora episodes on Michael's iPhone and a nurse brought in a cornucopia of Princess items so Sylvie was really pretty comfortable. She will inevitably fall asleep on either Michael or me when we have to go to the bathroom badly.

Fast forward, Sylvie is back on 5E, Room 4, otherwise known as the FREEZING room. Ally is down the hall in the "Honeymoon Suite" and it's like nothing has changed at all. Except... we were psyched to see a brand new Toshiba DVD player in Room 4E! Jackpot! I also noticed that www.google.com is now blocked by the HUMC server. Good thing they don't know about www.dogpile.com or I wouldn't be able to look up things like "neutrophils" and "tPA."

Sylvie's fever never even reached 102 but it's high enough to keep her in the hospital for 48 hours. We don't have the results of the blood cultures yet. Just when I was complaining about the barium and 3 CT-scans tomorrow, now it is no longer our problem. Sylvie's ANC count (Absolute Neutrophil Count) was actually a little higher last night which is a good thing and no signs of a fever this morning. That being said, it's still super low so Sylvie can only be around 100% healthy people and no trips to the candle, book or toy store. Her mouth sores are returning and this time we know to ask for around-the-clock morphine.

It's Wednesday so Morag the bead lady dropped by to make Sylvie a necklace. Sylvie stared in awe at the little ziplock bags of sparkly beads. I told Morag that we'd see her next Wednesday for sure. Katie is our nurse for the day and Sylvie has been really playful with her. Clearly Sylvie has fogotten what Katie looks like in her royal blue paper scrubs and face shield when administering chemo drugs. Sylvie asked Katie if her doll to get heart monitor stickers and even reached up for Katie to hold her.

Sylvie's next round of chemo, which is inpatient is scheduled for Tuesday. The team just made rounds-- those who haven't examined Sylvie's tummy in the past 12 days are truly amazed at how the tumors have gotten smaller, how her abdomen is less distended and in general, how much better Sylvie looks. Dr. Diamond said that if Sylvie doesn't run a fever today, we can go home for the weekend.

Today's is Sylvie's BFF's birthday. Sammy is turning 4 and is the reason why Sylvie loves princesses so much. Sylvie asked me yesterday if we could get her a birthday cake. She wants to call Sammy later today to wish her a happy birthday.

For now, it's back to Princess Movies, Dora the Explorer and Barbie while we settle into our routine back in Room 4.

It is what it is. Story of my life. If we were mad or upset that Sylvie was back in the hospital we'd drive ourselves crazy. That being said, it was great being home for 12 days and I look forward to the next time we can go home together as a family.

*The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common.