January 25, 2009

Luca's First Bath

A few weeks ago, the central IV line that was coming from Luca's back was removed, and replaced with an implanted port. The port's line and access point are implanted just below the skin. It's only accessed through a needle on the days when IV medications are scheduled, which thankfully have been fewer and farther apart these past few weeks. The rest of the time, the port is completely covered and protected by Luca's skin.

So, without an exposed line for the first time since he was 2-months old, Luca was finally able to take his first bath! He was initially skeptical of the whole concept, and made it clear that he wanted out. But within a few minutes he was splashing and laughing and looking in amazement at the bubbles and toys floating by. Bathtime is now part of Luca's nightly routine, and one more small, simple privelege for which we are extremely grateful.

January 10, 2009

Luca Playing With Some Blocks (video)

Home From Transplant

DSC_0162 After more than 40 days in isolation for Luca's transplant, we were cleared to return home on Christmas Eve. It was an incredible blessing to have Luca back home for his second Christmas, where he was surrounded by family (but only two at a time), and a mountain of gifts.

We've been slowly adjusting to "normal" life, as it's always a culture shock to leave the safe cocoon of the hospital, and no longer see all the amazing people who were part of our daily life for so long. We often have to remind ourselves that a crying spell probably means that Luca is teething, and not something more serious. Luca is clearly excited to be home, and has been busy catching up right where he left off. 

His transplant seems to be progressing very well. Last week a test showed that he's already started to produce T cells, which means that Luca's donor stem cells have started to generate an immune system. In general, it takes about a year to be able to say that a transplant was successful, but so far so good. Luca will have weekly follow-ups to monitor his progress for some time, so we'll do our best to post updates.

Thank you all so much for your continued support. It's been a long journey, and we're truly humbled that people are still following Luca's story. Some day, when he's old enough to read all of the comments and emails and cards, he'll be able to see how many incredible people were by his side during his struggle.

This week a couple of our good friends at Sloan, who have already been through so much, received some difficult news. Please make room in your prayers for all the brave kids on M9 who continue to fight each day.

December 19, 2008

Luca Turns One


Luca had a great first birthday! All day long, a steady stream of visitors from the hospital stopped by to congratulate him. Auntie Sue and our amazing friends from Child Life filled his room with balloons and decorations. He received more birthday presents than can fit in our room. We read him all of the emails, comments, and cards from his family and friends. And most important, he was feeling healthy and happy.

The transplant team has very excited about Luca's progress the past couple weeks. With any luck, we'll be checking out early this week, home in time for Christmas. Stem cell transplant is an up-hill battle that requires long-term follow-up care, but returning home after the initial engraftment period is a huge step towards recovery.

When Luca was first diagnosed, we would often think about his first birthday as a distant milestone that would take a miracle for us to reach. It's a testament to all of the staff at Sloan-Kettering, all of your love, prayers, and support, and Luca's will to fight that he is here, smiling and laughing and refusing to give up. Happy birthday Luca, and may God grant you many, many more.

Photos - November & December 2008

December 09, 2008

Back on Track

DSC_0010 Luca has made a lot of progress over the past few days. After a few scary nights in the POU, his breathing problem began to resolve itself, his white cell counts continued to climb, and he started to look like himself again. Yesterday we were released back to the normal floor, and today Luca was playing and laughing, a site we hadn't seen in a few weeks.

We also got back an important test that was sent out last week. The results show that Luca is engrafted with 100% of the donor cells, which is very good news. The transplant team was excited and optimistic about the progress, and we feel incredibly grateful. Thank you to everyone who took care of Luca during his rough patch, and to Luca for staying so strong.
Here's a slide-show of the pediatric floor at Sloan-Kettering that was recently posted on their site.

December 03, 2008

Beginning to Engraft

DSC_0200 It's been a couple weeks since we've had a chance to write, so apologies for the long post. Here are a few updates:

The staff and volunteers at Sloan helped made Thanksgiving at the hospital as normal as possible. Since we weren't able to bring Luca out of the room, volunteers brought us a small table with a white table cloth, and delivered a surprisingly good Thanksgiving feast. Luca was having a good day, and was playing with his toys while we enjoyed a quiet meal and a bottle of wine. We have a lot to be thankful for: all the overwhelming support we've received from everyone, the amazing doctors, nurses, and staff at Sloan, all of the families we've met...and the blessing of having Luca with us.

At some point early Sunday morning, while we were asleep, Luca somehow managed to take off the thick bandage dressing on his chest and remove his central line - the tube that was surgically placed for all of his IV medications to run through. He didn't yank out any of the stitching; instead he gingerly threaded the line cleanly out, leaving an exposed hole, and then went back to sleep.

We'll refrain from including all of the details, but needless to say it was a shocking scene to wake up to. Within a few seconds there were about 10 doctors and nurses in our room. Luckily Luca had just received blood a few hours earlier, and didn't lose too much of it. The surgical team came in later that day to replace the line, and Dr. Emma (one of Luca's favorite surgeons) was nice enough to file down Luca's nails while he was under anesthesia in the OR. Hopefully that should put a damper on any further Houdini-like stunts.

The transplant is going generally well. Luca's counts have started coming back pretty quickly, and this is evidence that his transplanted stem cells have begun to engraft. This is very encouraging, and everyone here is impressed and excited at the progress.

He has seen some bad days from the nasty chemo side-affects, but has been able to fight through them, hour by hour. Over the past few days, however, it's become more and more laborious for Luca to breathe. There are a few potential causes, and we're staying on top of each one. Last night the team decided that Luca's situation was deserving of closer attention, so we packed up our stuff and moved over to the Pediatric Observation Unit, where we started our journey at Sloan back in March.

Here Luca has his own nurse, and his vital signs are monitored continuously. There are two potential places you go to from the POU: back to the regular floor if things get better, or across the street to the ICU if things get worse. Things are looking good so far...Luca was able to hold his own last night, and today even had enough energy to sit up and play for a bit. God willing, the continued return of Luca's white cells will resolve the problem over the next couple days, his breathing will return to normal, and we'll have another sigh of relief to let out on the way to a recovery.

As always, the love and support we've been lucky enough to receive helps us through each day. A grand caynon of thanks to everyone.

November 20, 2008

Luca's New Birthday


Today was the big day! After months of planning and anticipation, and an 8-day cycle of chemotherapy, Luca received his cord blood transplant.

The actual infusion was relatively calm. Luca played with his books while his doctors and nurses hung the bags of stem cells to be infused through his IV. The entire procedure lasted only a couple hours. But the weight of the event was very much a tangible force in the room. As we watched the bags of pale red cord blood slowly drip down, we knew that the new cells entering Luca's body were going to save his life.

Our next step is to wait out the 2-4 week period of neutropenia caused by the chemotherapy, a tense waiting game that we've grown familiar with. The past couple days have seen the crippling effects of intense chemo slowly tighten their grip, and unfortunately the symptoms will likely get worse before they get better. But we know what it looks like at the other side of this tunnel, and we'll focus on that as Luca fights his daily battles.

Congratulations Luca! We're proud of you little guy.     

Waiting For The Cord Blood to Arrive (video)

November 02, 2008

Heading Into Transplant

Luca's post-relapse treatment went incredibly well. He received two rounds of TVTC chemotherapy, both of which produced noticeable reductions to the chloroma that had returned to Luca's nose. The potentially powerful side-affects of such a treatment were relatively mild, and Luca fought through them like a champ.

He also received low-dose localized radiation therapy on his nose and scalp, to help destroy any cancer cells in his skin that the chemotherapy didn't reach. The only noticeable side-affect from the radiation was losing all of the hair on one side of his head. This left Luca with an asymmetrical sort of punk-rock haircut that we dubbed "the half-moon cookie".

Scans from last week revealed that the chloromas in Luca's nose and scalp were once again gone. As devastated as we were when Luca so quickly relapsed, we were elated that with the help of everyone at Sloan, and all the prayers of our family and friends, we were able to once again beat it back down.

For the past few weeks we've been working with the amazing bone marrow transplant team to plan for the next step in Luca's recovery. Because there are no tests sensitive enough to guarantee that every single cancer cell in Luca's blood has been destroyed, the basic idea is to completely replace the system in his bone marrow where new blood cells are created with that of someone else's.  

The treatment begins with an intense regiment of high-dose chemotherapy designed to quickly and comprehensively destroy any remaining cancer cells, as well as to remove all of Luca's blood-producing stem cells in his bone marrow. This is not unlike the intense chemotherapy that Luca has already seen, and has all of the same side-affects and risks. Then, on the 10th day of this "conditioning" period, the healthy stem cells from a donor's bone marrow are infused through Luca's IV line, and the long period of grafting and accepting the new cells begins.

We were excited to learn that Luca had a perfect 10 out of 10 match who was willing to donate their marrow, and plans were put in place to move forward. But, as is often the case with the long battle against cancer, we heard late last week that plans had changed. The donor would need an addition couple weeks to undergo more screening tests, and the team feels that this would be a risky delay. So instead, the plan is to get the new stem cells from the cord blood. This is a relatively new procedure in which the stem-cell-rich blood from donated umbilical cords is used for the transplant instead of the bone marrow of an adult donor. There are some unique risks associated with a cord blood transplant, but it is widely used at cancer institutions across the country, and generally has the same success rates (and potential complications) of bone marrow transplant. For now, the plan is to start conditioning therapy late next week, and transplant the stem cells in the middle of November.

It's difficult to see Luca so happy and healthy, and somehow accept that we have to once again take him away from home and put him through another long and grueling battle. But we know that the transplant will give Luca the best chance at winning his war, and that the stength and spirit he's shown in the past will once again see him through.

Thank you all for your continued incredible support.