Thursday, August 7th, 2008

Thursday, August 7th, 2008 - At 8:30pm ET tonight, Mattie began his first chemotherapy.

The first week of this five week cycle is as follows:

• First, are infusions of both Zofran and Dexamethasone, which are both anti-nausea medications to counteract the chemo. The Dexamethasone will be given every eight hours from here through the next week.
• Second, both the first dose of Doxorubicin ("Doxo", a chemo drug) and Mannitol (a diuretic to improve fluid flow that will help flush the chemo drugs from his body) will be infused. The Doxo will run for 24 hours after which a second 24-hour infusion will run (see below). The Mannitol will be given by itself for four hours in parallel with the Doxo.
• Third, the Cisplatin (another chemo drug) will then be given for four hours in combination with another four hour administration of Mannitol (again to help flush the fluids out of Mattie's body). The Cisplatin is the drug that typically causes nausea and vomiting (emesis), so tonight, Mattie will also be given some Ativan (similar to Valium) that in low dosages tends to both resolve the nausea/vomiting and puts a person to sleep.
• Fourth, following the four hour Cisplatin infusion, Mattie will then go on post-Cisplatin hydration until the next round begins.
• Fifth, the second 24-hour infusion of Doxo will run again in parallel with Mannitol (the diuretic to help flush the chemo).
• Sixth, the second batch of Cisplatin will be administered in combination with Mannitol that will run for four hours.
• Seventh, the post-Cisplatin hydration will continue during which Mattie may receive several drugs to help his blood chemistry and organ functions to return to relatively normal levels.
• Mattie will have blood drawn each day to check on a variety of enzymes and mineral levels in his bloodstream. The impacts of these specific chemo drugs are well know and predictable, so between blood tests, void rates, specific density of the urine and of course his vital signs, Mattie's health will be closely monitored.

... and this is just the first week. Given that this is an induction chemo cycle, the entire staff will be monitoring Mattie's situation hourly, 24 hours a day throughout the next few days. The projected timeline is to complete both sets of Doxo and Cisplatin within 48 to 60 hours, and then Mattie's recovery from these chemo drugs could be as short as 16 hours or as long as 5-7 days. So, we could be going home as early as Monday or as late as the end of next week.

We had another unfortunate incident today regarding a short-notice scheduled CT Scan that could not be performed because Mattie got himself hysterical. Given the timing of when we found out about the CT Scan, we could not put Mattie under (using Propofol), so our only choice was Versed. This did not work as Mattie is now very traumatized by any procedure. He constantly asks about what is going on, why someone is doing something, what is happening next, and he is struggling for control of even the smallest aspects of his life given that so much now is completely out of his control. It's absolutely horrible to watch this, so when this happened again today, both Pete and Vicki issued a direct mandate to all that there will be no more procedures for now without sedation, and that all future scan schedules must be well planned and consolidated. I believe the message has been received and understood, and although not ideal, I will not have this poor kid traumatized one more time. No way.

On a lighter note, we were blessed again today with several visitors and of course dozens of wonderful messages and comments on the blog all offering support, love, well wishes, prayers and pledges of help for Mattie and us. Brian and Catherine Canterbury paid Mattie a short visit between competing doctor and nurse visits to deliver well wishes and several things to keep Mattie's hands and mind busy. Catherine and Mattie share something in common, and Catherine was helpful in describing to Mattie some of the things that are coming. Also, Joan Holden and Bob Weiman (St. Stephens/St. Agnes Head of School and Head of Lower School respectively) also came to say hi to Mattie and performed some magic tricks and gave Mattie a Saints hat, a Saints hound and of course some of his own magic tricks. Also, Lorraine Kleinwaks came to visit today as well. As one of our fiercest and dearest, non-blood related family members, Lorraine's presence always helps us in many ways.

We were also lucky today to have Tricia as his nurse today for the 7am-7pm shift, a seasoned and well practiced individual who blended firmness with sensitivity in everything that she did. Tricia spent the time with Mattie, and with Pete and Vicki walking through some of the maintenance procedures for Mattie's central line and the timeline for the chemo starting tonight. This helped us to start processing what to expect from the the myriad of drugs, fluids, steps, equipment, sequencing and timing that will now dominate our lives for the next year. We have to continue to thank the Child Life Specialists, particularly Linda Kim, who is really an angel and savior wrapped up in one.

The prayer circles are extending as we speak, family members are putting their lives on hold for us and friends are circling around us working hard to figure out the best ways to support us. Vicki and I are the kind of people who are used to helping others, so among everything else going on, we are having to reach a series of realizations and make a transition: admitting we need help, and shifting from those who help others, to those that need the help of others. We are not sure in many cases how to act or react so thank you for being patient, supportive and understanding.

So tonight we are underway on the next phase of this unenviable journey. Mattie is on the bed now watching a Scooby DVD, the hospital room is looking a little less sterile thanks to Mattie's artistic touches and decorating activities (i.e. glow in the dark bugs on the wall, stuffed animals on every gas valve and resuscitation vessel, masks and volcanoes made from model magic, magic swimming fish, baseball hats and a variety of art projects). Mattie is still his same old self, full of life and spirit, wonderfully inquisitive and remarkably insightful. Mattie had to upgrade tonight to a pole that had three IV pumps on it (not just the one that he has been tethered to the last four days), and his biggest concern was what name to give it. He then decided to take it out for a walk around the floor and halls to show off his "upgrade" to everyone (and also in part I think to prove to himself that he could handle maneuvering it around the halls). Needless to say it was a successful journey. Here's hoping this is an indication of what's to come.