Day +11 Halloween at UCLA

 

Today the hospital celebrates Halloween by having the kids who can move around go around to the nursing stations to trick or treat. For those who can’t leave their rooms, a reverse trick or treat is done by having volunteers go around to the rooms. Since Elle doesn’t have teeth and can’t eat chocolate, Fernando had to eat on her behalf. He may lose his teeth when he gets older.

Elle used her powers of the force to bring out the little Yoda in herself and charmed the nursing staff in the process. The Force is very strong with her as proven by initial results given to us by the study Doctor that Elle has the highest ADA enzyme activity in cells re-infused back into a patient. Now that means the cells that have been modified with the new ADA gene are working very well. Could that be comparable to Mitaclorians in Jedi? Too soon to say. In about a month there will be a test to see how many of the new cells actually engraft. Long live the Rebellion!

 

Day +10

 

Best quote today from one of the docs was “ You have the healthiest child on the floor!”. Sometimes I think they’re bored with us since there isn’t enough to teach the interns. This is a teaching hospital after all.

Elle is doing well and progressing through the steps needed to leave the hospital. Her blood levels have gone down a bit as expected as she rides the neutropenic see-saw and makes a B-line for the “safe” zone.

Today Thuy flew back to Seattle to get some rest, get out of Groundhog day, and be reminded how Maddie is a handful. Good thing Fernando’s mom is taking care of her and we have a nanny. It’s 3 to 1 right now, so it’s a fair fight. Fernando flew in yesterday to take over duties with Elle.

First thing to do was get Elle into shape with some tummy-time – how cute is this?

 

Day +6

Aunt Emi and Al drove down from the Bay Area to help babysit me. Al (AKA the baby whisper) watched Elle sleep to allow me to go and breathe some non filtered hospital air and drop off the laundry. I would call it fresh air, but I am in the middle of LA, you know. Elle was great for him and only cried 3 times. Each time after Al calmed down from the panic, he just put her pacifier in her mouth and patted her butt (her off switch). She fell back asleep all 3 times. Emi brought me food from the outside world which was wonderful. Elle and I both cried when they left. Elle enjoyed the visit to play with someone who wasn't me.
Elle continues to do well and be quite the trooper. She still has digestive issues and lots of gas which is quite painful for her at times. I hope this is the bottom and we start to come up. She still continues to be super cute and playful. It's amazing to see the transformation out of the "4th trimester." She has mad skills now of grabbing her toys and bringing them to her face. She was sitting on Emi's lap at a 45 degree angle and pulled herstlf to a sitting up position - we were all amazed. They grow up too fast.
I've asked Fernando to post some pics of Maddie. So, if you are wanting to see those, please send him an email to him. I miss her loads and can't wait to see her next week-though I am equally sad to be away from Elle.

Day +4–Almost neutropenic

Elle continues to be very cute and doing well. The key blood indicator that we watch (ANC or absolute neutrophil count) to show her progress on how the chemo is working is starting to drop to the level where she is classified at most risk of getting a bacterial infection. Maddie was neutropenic on day 11, but the doctor says that Elle dropping this early is in the same range as some of the other children in the study. If things continue to go well and if Elle’s levels start coming up, there is a some hope that we can go home earlier. There is some risk that the drop is due to an infection, but we are watching her temperature and demeanor carefully.

Fernando somehow figured out that Elle likes the song Smelly Cat from Friends. Here is Elle smiling, doing her new sucking sound, and finding her hand.

It’s been 4 days, and I have only left the room once.  It actually isn’t that bad since Elle is a good sleeper.  My days are divided by reoccurring activities that last between 15-45 minutes:

1. Feed Elle
2. Put her to sleep
3. Actively play with her
4. Ignore her (other parents may call this allowing her to develop independence by playing alone
5. Actually let her play by herself and sit next to her watching
6. Surf the internet with her sitting on my lap
7. Carrying her around the 10x15 room
8. Talk to anyone who comes through the door and not let them leave

Elle has fashion freedom

This is my current favorite new Elle face. She is growing and developing like a weed and is doing great so far - back to her normal playful self. Elle was disconnected from her IV yesterday, so she is free to move around the room without being connected to a pole holding her IV fluids. This also means that she can wear 2 piece outfits - oh the fashion freedom! She will continue to get blood draws at least 2 times/week which means we may need to handcuff her back to the pole. From a mother's perspective, I feel like I have a new baby again! While she was hooked up to all of the monitors, we had to keep her in her crib a lot. Now that she is wire free, it is great! Just sitting with her on the couch feeding her is a wonderful feeling...and easier on my arms and back.


So, I've been alone with Elle for over 48 hours in her room. I haven't left this space, but I did open the door to look out the hallway. I know - crazy. We do have a view outside which helps though the rainy LA weather has been reminding me of Seattle. Random that Seattle has sunshine right now and LA has rain. Luckily, Elle is a great sleeper which makes this solo schedule much easier. She sleeps through the night from about 8 to 5:30 only waking to eat. She then goes back to sleep in until about 8 then will just play in her crib until I decide to get up to feed her. She is on a pretty regular 1 hour nap schedule 3x/day. Let's hope this continues at least until Fernando gets here next week to swap shifts.


Fernando has reported back on Maddie and that her personality is even stronger than it was before. She has now gone from dropping food on the floor to flinging it across the room. Sweet. I have a baby monitor in the room that I am going to try out. I am going to sneak away to get some food downstairs from the cafeteria. The nurses station will listen and if Elle cries, they will send in reinforcements.

Day +1

Yesterday once again, a PhD carried the stem cells over from the lab.  There was a lot of discussion on guaranteeing that the cells belong to Elle since there was only 1 identification number (standard hospital procedure is to have 2) and her name was not on the syringe containing the cells (to hide her privacy in the clinical trial results).  Finally Dr. Kohn said that Elle’s cells are the only cells that have been in the lab all month, so there is no way there could be a mix-up.  Elle did great during the transfusion.  She was super mellow (a little sleepy from the Benadryl) and just laid there and watched as the slight chaos happened around her.  There were 6 PhDs, 2 RNs, and Fernando and I with the least number of initials behind our names.  Elle was being monitored all night post transfusion which means there was constant beeping.  That combined with this weird banging sound occurring in the water pipes in the wall was the formula for a poor nights sleep for both Elle and I.  Now we just keep Elle infection free and hope her new and improved stem cells graft.  Congrats little one for being such a fighter and making it this far – and looking so cute all along the way.

Fernando flew home to sleep in comfort yesterday.  This morning when Maddie first saw him, she looked at him like she didn’t know him.  Then she pointed at him and said “Pa Pa!”  Her newest skills include climbing up on the dining room chair and removing the vent covers.   I can’t wait to see her again late next week.

Day -1

Today Elle sat up for the first time. Fernando says it is because she is like a bean bag with her pudgy tummy supporting her in the sit up position. She is feeling a lot better and has been quite chatty and more smiley. For the past few days, she has only been smiling at Fernando. She won't even look me in the eye, but today, I was able to get a few great smiles from her.

The weekends are normally quiet here. Yesterday, the pediatrician normally following Elle had the day off, so Dr. Champagne (yes, that really was his name) took over. The attending doctor didn't have his normal entourage of fellows, med students, and interns. We call them the gyno girls even though that is not their specialty. When you spend 24 hours a day in the hospital, you have to find something to entertain you. I really think the doctors here (at least the fellows and med students) are more attractive than the national average - so LA...

So, what was on our agenda today, ie what will we search for online ad nauseum? What new car I will get after the Jeep (or the go cart) goes to car heaven.  I think watching the nice cars getting valet parked is getting to us.

9 AM - Fernando narrows the decision to Audi A4, BMW 3 series, some Lexus sedan, or Jaguar.  (Jaguar is soon nixed as we see the price tag for the entry level model.)
10 AM - I decided I wanted a Mercedes C Class sedan. Fernando tries to convince me otherwise.
1 PM - We now want a car that we get to go to Europe to pick up. Fernando is ok with the Mercedes since we can go to Stuttgart to pick it up.
5 PM – Since we live in Seattle, we decide to wait until an electric car or electric hybrid comes out. Mini E and Audi come back into the picture as potentials.  So, hopefully our backs and the Jeep can last until at least 2013. 

That's a full day for us. I'm tired. Now it's time for us to read by flashlight so Elle will sleep...

Where is Elle being treated?

Here’s where we are at UCLA. The facility is called the Ronald Reagan Medical Center and the Children’s wing we’re in is called Mattel Children’s Hospital – so we get free toys delivered by ex-presidents.

 

Rooms are nice and modern, some have PlayStations and they all have flat screen TV's. From our window we can see all the nice expensive foreign cars being taken away by the valet service. When we have nothing else to do, we can do some celebrity sightings as we’ve been told the floor just below is very popular with the stars on rehab. Everyone here is beautiful.

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.