Day -3

Elle is sleeping right now and receiving her single dose of chemo. She weighs in at 6.545 kilos (almost 14 1/2 pounds) - only 4 pounds less than Maddie. She's been doing great - strong like bull (said in a Russian accent). All the doctors and nurses talk about how beautiful, cute, and mellow she is. Obviously, they are not in the room to hear her wrath when she is hungry.

The report so far is that her marrow looks good. They were able to get a good harvest which is always the problem when they get a baby so young. We keep hoping that nothing goes wrong in the lab. Today, they are starting to add the virus to the stem cells in hopes that the fixed ADA gene will get inserted into Elle's stem cells. They will do this for 3 days, and on Monday (Day 0), they will wash the cells, test them for any bacterial growth (we need this to be negative), then transfuse the cells back into Elle. We are wishing the next few days will be uneventful.

Last night as we were trying to watch the Colbert Report on Fernando's laptop, we got the Windows 7 blue screen of death. Why Bill why? I think Fernando and I have been through enough. Is it because I work for Adobe now?

The eye of the hurricane

Elle is doing well today, and the plan is for a non eventful day. Yesterday, Elle went to surgery and when she came out of sedation, she was a little groggy but sucked down her bottle like a champ. She was a little whiny a few hours after surgery, so the nurse gave her some morphine for the pain. I could tell she was having longer dream cycles and was more animated in her sleep than normal. No one knows in babies, but the adults who take morphine talk of crazy dreams. Let's hope Elle's dreams are good ones. She spiked a little bit of a fever yesterday, so Fernando and I monitored her temperature every hour or so through the night. Between that and the beeps of the IV, it made for a long and rather sleepless night. Today, she is smiley and back to normal, but she is still a little sore when we pick her up. Tomorrow, Elle gets her chemo, so it will be busy with blood draws every hour. Since Fernando has been her main caretaker for the past 2 weeks with me having the cold, she only looks and him and has smiles for him. Let's see if I can change that next week when Fernando goes home to help take care of Maddie.

What is it like for the parents during a hospital say like this? In the evening around 8, Elle goes to bed. She does not like light or noise, so that leaves Fernando and I on our laptops with headphones in the dark. See picture to your right. It really is not more fun that it looks...

All you single ladies - there's a hot surgery fellow that came in to check on Elle. He came in last night, looked at Elle and said "Hey buddy!" Fernando said, "Uh, she's a girl." I can't wait for her her wounds to heal a bit so she can get out of the hospital gown into some normal clothes. Let me know if you want to fly down for a visit to check out the hotties and see the Elle the cutie.

A walk down memory lane

We are on Day 2 of being at the hospital, and I already feel like Bill Murray on Goundhog Day. Even though Fernando sits on the other side of the not so large hospital room, I have already started to IM him rather than talk. We recognize about 1/3 of the staff here since it has only been a year since we were here with Maddie. Initially, we would see someone and say hi and try to remember where we knew them from - college, friend of a friend, etc. However, it is always that they helped care for Maddie last year. Walking through the halls and on runs to get food is way too familiar - as Heidi would say on Project Runway - "and not in a good way."

Yesterday, the nurse was unable to get the PICC line into Elle (re-run of what happened with Maddie last year), so we move to plan B which is to get a portacath on Wednesday. The portacath will be used to get blood samples, administer her chemo, and to potentially administer any other drugs in case she gets an infection. Today was a medically uneventful day except that we discovered that Elle's IV came out. The site had already clotted, so we have no idea when it came out. So, tomorrow at 3 AM, Elle will get a new IV in preparation for tomorrow.

We took the opportunity to get Elle baptised by Fr. Tom (pictured left). As he is from Long Island, I like to call him Fr. Tommy. We had plans to baptise Elle last Wednesday in Seattle, however, Fr. Jordan caught a cold, so he had to cancel. They do the baptisms enough here that he showed up with a fairly sterile ziplock bag baptism kit with a felt gown, candle, shell to hold the holy water, oil and rosary. Unfortunately, Elle's God parents (Michael McDonald and Fernando's sister Theresa) could not be here, so we will try to do another ceremony for both Maddie and Elle as soon as their immune systems can handle the germy crowd in the church.

Tomorrow starts the first of the 5 days of her therapy with the portacath insertion and bone marrow harvest. On Friday, she will receive her chemo if they are able to get enough stem cells from the harvest. On Monday, if there are no problems with the gene transfer, then she will receive the transfusion. Any prayers and good thoughts and vibes totally welcome.

Everything is fine at the home front in Seattle. Fernando's mom is really enjoying looking after Maddie. She does take about an hour to go to bed and keeps looking for us - which breaks my heart. However, I know she is enjoying spending the quality time with Avo.

The nurse we have today told us about her prior job in Hollywood at a high-end emergency clinic that catered to the wealthy and movie stars. Management asked her if she wanted to get preventative Botox, and nutrition told her at 5'7", she should weigh in at 116 pounds. She knew she needed to get a new job. It reminded me about the 15 minute screen interview at Andersen Consulting. Everyone knew it was just 15 minutes to cut the unattractive ones...

We are at UCLA

Fernando has amazingly kept himself and Elle cold free. So, we left last night and made it to UCLA. The airport was very quiet (thank you recession) and the journey quite uneventful. We compare everything now to our experience last year. The admission office couldn't figure out what to do with us at midnight, so I told them that I should just go up to the 3rd floor which is the pediatric ward. The woman looked at me with those "I don't know about that" look, and I told her that I did this last year with my daughter. She said OK, and we made a run for it. We didn't look security in the eye and made it to check Elle in.
1 AM - get the room - it's a double, would we have to share?
1:30 AM - finish getting checked in by the nursing staff
2:00 AM - Night attending doctors check Elle out
3:00 AM - Nurse comes in for blood draw/IV
5:30 AM - Fernando feeds Elle
6:00 AM - Elle gets her vitals checked
6:30 AM - Get moved to new room which is a single! Smaller than the one we had for Maddie but works just fine.
8:30 AM - BMT docs check Elle out
9:00 AM - Dr. Kohn (PI in the gene therapy trial) checks Elle out; sign a bunch of docs
10:00 AM - Breakfast
10:30 AM - Elle goes under to get her PICC line
During this time, I think Fernando got 15 minutes of sleep and I managed about 3 hours. How's that for uneventful.

Leaving Maddie was harder than I expected; however, she is probably being taken care of even better by Fernando's mom, Avo. So, we did what other bad parents like us do - we loaded up on toys that will be evenly distributed to her for the week we are away. Moments like these really cut through your heart and redefine what it means to have a child.

Maddie and Elle both get cuter and cuter every day. Maddie's sassy personality is really starting to show, and Elle is getting very chatty with her more distinct coos. As for Fernando and I, we just keep ageing and wonder how this all started and we dream of the days when we can all just exist as a family free of some of the anxiety. A nice beach, lapping waves and giggling children would be nice too.

Sunday cannot come soon enough...

We are down another soldier. I am sick with the cold. We are 3 for 5 in our house, but the only critical one is Elle. We are desperately trying to keep Elle infection free, so Fernando is working from home to take care of Elle. Look how upset she is after only 5 minutes of Let Your Baby Experience What You Do For a Living Day. I don't know if you can see it, but this conference call is making her foam at the mouth.

I think Maddie has forgotten that she has a younger sister since we have been keeping Typhoid Mary away from Elle. We are on Day 8, and Maddie still has a runny nose. However, she is back to her screaming self and is eating better, so we are hoping that this is a sign that she kicked the bug. I don't know how much of this was from her Vivaglobin or from her own immune system. The doctors told us that Maddie's symptoms from a cold would most likely be the mildest since she is getting the shots, and so far that is proving to be true.

10 days and counting

Maddie is sick with a cold. This is the second time she has been sick, but the first time since treatment. She has a runny nose, is a little more clingy and more excitable (she already is an 11 on a scale of 1 to 10 on being excitable). She is still very cute and playful, though. At this point post treatment, the doctors are not too worried since she has been doing so well. We are just tracking and keeping her away from Elle - which is our main concern. If Elle gets the cold, this would delay us taking her down for therapy. She can have no active infections when she undergoes the bone marrow transplant and chemo. *Sigh* At this point, we will take anything you can spare to get her to, through, and post treatment - prayers, good vibes, witchcraft, voodoo, etc.

On a happier note, Maddie is getting very crafty which makes me kinda proud. On Monday night, Fernando wouldn't let her go to the dining room because the mess she left from dinner was still on the floor (which is her favorite time to play with food). First she tried just using her super strength to run through Fernando. Then it was time to call on her toddler lightning fast speed to run past Fernando. When those didn't work, she turned to trickery. She pretended that she wanted Daddy to read a book to her. When she positioned herself so that she could make a straight b-line to the dining room, she threw the book at Fernando and made a run for it. After we all calmed down from laughing, Maddie's final attempt was to crawl to the dining room because maybe we wouldn't see her if she crawled instead of walked.

Other than being in quarantine, Elle is doing well. Her lymphocyte count dropped way down from a high of 2600 to about 750, and the doctors just say that is just what her body is doing. Other than that, she is growing like a weed. She is still the super cute squishy, coo-ey baby but growing way too fast. She is sleeping great through the night, but I am waiting for someone to invent a baby bed that heats up and is cozy called "the womb." Elle is only taking naps in her baby carrier. Why can't someone invent a crib that looks like a chest with bendy arms that heat up? As soon as I see an info-mercial, we are totally there,.

We have Elle's planned schedule. Sunday, October 10, we fly down to UCLA. Monday, they run various tests, and Tuesday, Elle will get her bone marrow extraction and CVC (central venous catheter) to receive the chemo and transfusion. On Thursday, she will receive the chemo, and the following Monday, Oct. 18 she will hopefully be transfused her new and improved stem cells. After that, it is a wait and see game and pray for her health.

So, I thought I had a great idea and buy us all matching pajamas. It ended up being a little weird, but still kinda funny.

Last weekend, Fernando came down with Elle in the morning, and her eyes were goopy from a blocked tear duct. I asked if he washed her face, and he replied "No, I am a bad Dad. I guess I could just say 'No, I am a Dad.'" Oh the start of a typical Saturday.