Finally, a taste of normalcy

For the first time in almost three months, Julianne, Annalise, Isabella, Nathaniel, and I will be sleeping under the same roof.  This week, Isabella will be free from any medications and procedures, except for a quick blood draw on Thursday.  We are certainly going to try and make the most of this week.  Today was a great if not hectic start to the week, as we had to pack everything up from Rusk and the Pediatric unit to take home.  Once we got home it was a typical day with us having some lunch, dinner, and ending it off with a movie night watching Wall-E.  Here are some pictures from the day.

Isabella was so excited to go home, that from the time she woke up, she was running around and couldn’t sit still. 

Here she is getting ready to go home.  Annalise and Isabella are wearing High School Musical hats that they received from the hospital.

This is another nice picture of the sisters hand in hand as they leave the hospital.

Here are the girls leaving the hospital.  Isabella planted that plant a few weeks ago in horticultural therapy (I told you there were many types of therapy available!) This is our car after packing everything!

It was a long ride home and Isabella fell asleep on her sister.

Daddy’s finally home and cuddling with all of his kids.

Some Bad News and Some Good News

The bad news is that Isabella's platelet count hasn't quite fully recovered from the last round of chemo (platelets are the blood component that help to form clots to stop bleeding). She had the platelet transfusion on Thursday and had the bad reaction to it, but her platelet count has dropped a little more since then. In order to start the next round of chemo, we need to be sure that Isabella's body is producing enough platelets, but at this point, it doesn't look like she is, so Cycle 3 of chemo will be postponed.

The good news is that Isabella is being discharged today and we will be going home for a full week! We decided not to go back to Rusk because from previous experience with Admitting and the insurance company, she probably wouldn't get back until Wednesday or Thursday, then she'll have to come back on Saturday to start the next cycle. Instead, the doctors and us agreed that Isabella would do just as well and probably even better just going home. Her hand and legs have progressed so much that we don't expect to lose much (if any) progress by being home for a week.

We're all extremely excited to be going home. Julianne is on her way in now, and we'll have to pack the tons of stuff that we've accummulated over the last 3 months that we've been here. Sometime this week, we'll have to get another blood count for Isabella just to make sure that her platelet counts are back up. Then on Saturday, we'll come back in to continue her next cycle.

The Whole Tooth…

…and nothing but the tooth.  Isabella had 3 teeth come loose over the last few days.  Today, the first one fell out while she was eating her french fries.  She is so excited that it fell out and that she’ll be getting a visit from the tooth fairy that it was very easy to get a picture of her smiling this time.

P.S.  Sorry about the toothy pun.  I was debating over that one or “You can’t handle the tooth!”

The Scariest Machine You’ll Ever See

Isabella went through her second day of stem cell harvesting today.  The official term for separating the blood for collection is “apheresis”.  The apheresis machine (shown to the left, click to enlarge) is a pretty intimidating machine, with what seems like miles of tubing running all over.  Two tubes are connected to Isabella, one that collects her blood and one that returns her blood.  Her blood goes through this machine and goes into a big centrifuge in the base of the unit, which separates the blood into its various components.  The stem cells are then filtered out to a bag hanging from the unit.  The rest of the blood then travels through a heater (it’s the metal, cylindrical thing in the upper left of the unit) where the blood is warmed to normal body temperature before going back in.  I didn’t want to take a picture with this thing hooked up to Isabella, but needless to say, we were both amazed and nervous at the same time watching all this.

Depending on how many stem cells they were able to collect, we expect to do this for another two or three days, which would delay Cycle 3 of chemo for a couple days.  For the last couple weeks, we’ve been taking placebo pills with Isabella and she’s been doing great.  At first, we started with Nerd candy, then Tic Tacs, then Mike and Ike’s and now we’re  at regular capsules.  We want to make the pill taking as routine as possible so that when the time comes to take the real things, she’ll be very comfortable.

Isabella also had an unrelated scare earlier in the day before the harvesting.  Her platelet count was a little low, so they decided transfuse her with some platelets.  Almost immediately, Isabella started feeling itchy, and hives started developing all over her body and her ears swelled to “Ross Perot” proportions.  They immediately gave her steroids and benadryl which caused the symptoms to abate and also knocked her out for a little while.  They said it’s not unusual for this to happen from time to time, although this is the first time Isabella had such a reaction to a transfusion.

Stem Cell Collection Begins

Today, they began the stem cell harvesting on Isabella. Since they could not use her mediport to do the harvesting, they accessed a major vein in her leg while she was sedated in the Pediatric ICU. Then, for several hours, her blood was extracted through a machine which filtered out her stem cells and returned the rest of her blood. There is so much tubing involved that an extra unit of blood was added since she is so small and a relatively high volume of her blood would be in the machine at any given time. They had to continually monitor her blood pressure and temperature to make sure that she didn't have any adverse affects to the procedure. The oncologist and nurse practitioner stayed nearby for the whole process "just in case", but the whole process went very smoothly. (They even seemed happily surprised.) During the collection, Isabella was calm and watched a movie to keep her occupied.

Once the collection was completed, they wheeled her back to her room in the Pediatrics unit. They kept the access in her leg since they will have to do another collection tomorrow and Friday. They will count the collected stem cells each day to help determine whether they will need to collect more. If they don't get enough over time, they will have to do a bone marrow aspiration, which can be really painful, but they say that is rare. Once the collection is finally complete, we go right into the next chemo cycle.

Univision radiothon encourages listeners across the country to support St. Jude

(Full Disclosure - I work for Univision)

St. Jude Children’s Research Hospital has once again joined forces with Univision Radio, the leading Spanish-language radio group in the United States, in its annual radiothon to help St. Jude find cures and save children.

During the radiothon Promesa y Esperanza (Promise and Hope), taking place February 5 and 6, listeners can pledge their donations by calling 1-800-998-VIDA (8432) or by visiting www.promesayesperanza.org. The event will be broadcast to more than 15 markets around the country, including Los Angeles, California; Miami, Florida; Chicago, Illinois; New York, New York; and Puerto Rico.

Click here to read the rest of the article.

I mentioned in a previous entry that pediatric cancer (and pediatric brain cancer in particular) receives very limited research and funding. I don't know if it's just that I am more aware now, or if St. Jude has greatly increased their marketing push because I am seeing many more TV commercials and billboard ads increasing the visibility of these diseases. And now, they will be reaching out to the Hispanic community with a radiothon.

Super Sunday

Normally, for Super Bowl Sunday, we’re hosting a party or going over someone else’s house to watch this game.  This year, I took Annalise and Nathaniel into the City to visit Isabella in the hospital instead.  We had originally planned to take everyone to a circus, where we got tickets from the Making Headway organization.  But unfortunately, Isabella's blood counts were still low, so she wasn't able to go.  Julianne took Annalise and Nathaniel to the circus while I stayed with Isabella back in her room.

When they got back from the circus, we spent a very nice and enjoyable Sunday afternoon.  It was very typical with the kids running around and laughing with each other.  Since Nathaniel was sick for a few days last week, this was the first time in a while that we were all together, so it felt nice. 

Here are some pictures from the day.

As soon as Nathaniel walked in the door, he went over and gave Isabella a nice big hug!

Annalise and Isabella listening to her MP3 player while enjoying some pizza.

Annalise and Isabella got a bunch of toy horses from a friend and they played with them for hours.