Wednesday, July 30, 2008

Zack had a great night. He is stable and resting...and this morning's chest x-ray shows that his lungs are improving! He is currently receiving another blood transfusion (he'll receive daily transfusions during ECMO treatment)...and a volunteer harpist is in his room playing for him. 

Tuesday, July 29, 2008

Everything changed yesterday evening...and then everything changed again this morning.

Zack was having a very difficult time breathing yesterday. As a side effect of pneumonia, his lungs became very stiff and developed tiny leaks that allow air to escape into his chest. The air in his chest cavity is not alarming because the body can reabsorb it...but because of the leaks, his lungs aren't able to distribute oxygen into his bloodstream. One of the many monitors he's been hooked up to shows the oxygen saturation levels in his bloodstream, "sats." Normally we should be around 100% saturation but Zack was having trouble keeping above 90%...and then above 85%. The doctors were ready to put him on a ventilation machine but I was not...I talked it over with Zack and explained the risks and he decided he wanted to be ventilated...So that procedure took place around 6pm yesterday evening.

Zack was completely sedated during the procedure and remained so afterward, as is standard. Ventilators do all the breathing and it's uncomfortable and dangerous for a child to be conscious while a machine is breathing for them. Zack seemed to be doing great on the machine all through last night.

This morning's chest x-ray showed that air was still escaping his lungs, much more so than yesterday because of the extra pressure and oxygen from the ventilator. He wasn't able to keep his sats high enough either. The docs called an emergency meeting with me and let me know that on the ventilator, his lungs were not going to be able to recover. They offered me an option called ECMO, Extracorporeal Membrane Oxygenation, which is essentially a lung bypass in which blood is taken out of his body, oxygenated, and returned to his body. The entire process takes seconds and happens in a constant stream day and night.

As I'm typing, Zack is just about to have the necessary catheters put in his veins. He will be taken off the ventilator and hooked up to a different respirator that won't exactly breathe for him but will inflate his lungs with air about 10 times per minute, keeping them open. The ECMO machine will be monitored 24/ of the doctors told me that he'll be more monitored than the space station. This process will give his lungs a chance to relax and get the rest they need to heal.

There are risks associated with this process but I'm focusing on the benefits and on giving Zack the help and time he needs to heal. Aside from his lungs, his body is very healthy. Luckily, he just recently finished the most intense part of his chemo. He's also receiving steroids to help his lungs and they are the same steroids that are part of his chemotherapy.

Keep sending your healing thoughts and your love. Though Zack will be sedated for the entire time he is on the ECMO machine, he will be able to hear me and I'll be reading comments and emails to him.

Thank you.

Sunday, July 27, 2008

Support Team in Training

My high school classmate Jill Magee (Terra Nova, Class of 1990) is participating in an upcoming Team in Training event on August 2nd. She will be raising money for the Leukemia and Lymphoma Society..and she chose Zack to be her honoree!

If you'd like to support Jill in her efforts, please visit her website:

Go Jill!

Friday, July 25, 2008

We continue to receive good news about Zack's health. We know he is recuperating from a type of pneumonia but all tests for the really nasty viruses are negative. He's taking only one antibiotic (down from five) and has stopped spiking high fevers. 

Zack's been using a BiPAP oxygen machine since Sunday. It adds extra pressure to his breathing, helping expand his lungs when he inhales. A few times a day he "sprints" --- uses only an oxygen mask (which supplies extra oxygen but not extra pressure) for about an hour. As long as he's using the BiPAP machine, he's not allowed to eat or drink. Steroids were started today in the hope that they will increase his lung strength. 

We are expecting to be in the ICU at least through the weekend. 

Monday, July 21, 2008

Zack's white blood cells are on the upswing, doubling in one day. Very encouraging news!

The doctors have narrowed down the diagnosis to pneumonia and are trying to determine which type he has. He's getting lots of rest now and the oxygen mask he's using is helping a lot.

Zack was moved to the pediatric ICU late Sunday night. He was having trouble breathing and wasn't getting enough oxygen in his bloodstream. Earlier in the night, he received a transfusion of red blood cells in the hope that the extra blood would help move oxygen through his veins.

Zack's grandma arrived this afternoon from Pacifica and is staying with us. Thank you, Grandma. (And thank you Grandpa for loaning her to us!)

We are exhausted and more than ready to go home. Hospital stays are anything but restful...Machines are always beeping and someone always seems to want to take something, explain something or administer something. It's a bit like the stateroom scene but no hard boiled eggs or manicures.

We love reading all the comments. Thank you everyone for sending positive thoughts, jokes, etc.

By the way, cell phones are banned in the ICU but I will check messages periodically.

Saturday, July 19, 2008

Zack's day started with a blood transfusion around 4am...he slept through it. He had an x-ray around 9am. His bronchioscopy, which started around 5:30pm instead of 8am, went very well. The doctors took a sample from his lungs...we will have results tomorrow. Despite warnings that he could end up in the ICU after the procedure (due to irritation of his already taxed lungs), he's currently (and happily) watching Monty Python in his room. He is still hooked up to oxygen but his breathing is not labored. He's feeling mellow from the sedation but he doesn't have a fever and is in a very good mood. Zack says he feels better than he did yesterday and I think he looks better, too. 

Friday, July 18, 2008

We're still in the hospital...More x-rays last night, a CT Scan today and a bronchioscopy first thing tomorrow morning. Tomorrow's procedure should help pinpoint the cause of Zack's fever and breathing difficulty. His blood counts dropped again but that is considered normal for this stage of treatment; they should start to go up in the next few days.   

Thursday, July 17, 2008

Zack slept fairly well last night, despite being hooked up to oxygen again. His blood counts continue to go down, the doctors assuring us that this is very normal. His fever has dropped a bit but not enough...He will be discharged once his counts show steady increase and he's had no fever for at least 24 hours. We'll be here for at least two more days.

Zack is in good spirits but he's definitely ready to go home. 

Wednesday, July 16, 2008

Zack is still in the hospital...His blood counts went up slightly yesterday but today's counts don't show any increase. I planned to take him outside in a wheelchair yesterday - to get some sunshine and fresh air - but his doctors won't allow him to leave his room until his counts are healthier. His temperature is still high, reaching 103 again today.

Last night Zack wasn't getting enough oxygen in his bloodstream and had to be hooked up to oxygen and monitored all night...A late night x-ray of his lungs showed no problems and he was unhooked from oxygen at 8am.

Zack just received his last dose of chemotherapy in the "Delayed Intensification" phase, which means he's officially done with the most difficult stages of treatment. He also gained a bit of weight and is 80 lbs for the first time in many weeks, probably due in part to large amounts of intravenous fluids. 

Monday, July 14, 2008

Hospital Stay

Zack was admitted to the hospital on Sunday night...he had a fever of 103.6 and his blood counts were very low. His counts have since gone down even more and he received a blood transfusion today. The doctors say he will be in the hospital most of this week. His fever has fluctuated since last night but he seems to be stabilizing. 

Zack's docs told us it's very common for kids to end up in the hospital during this part of treatment --- the last big push of chemotherapy before heading into Maintenance. 

Earlier today I was reading about faith from a non-religious standpoint...that it is "utter positivity" and that focusing on doubt is never productive. And so, I have faith...and we are focusing on health and viewing this as a way for Zack to rest after several weeks of heavy chemo.

Wednesday, July 9, 2008

No More Peg Shots

There's a lot to dislike about chemotherapy but peg shots are at the top of Zack's list. PEG Asparaginase shots are given in the thigh muscles and the number of shots at a time is based on the patient's weight. Zack's first peg shots involved three needles and three nurses counting one...two...three...ouch! Since losing some weight due to the chemo, he received only two peg shots yesterday for his final experience with the procedure. Nurse Cyndi and Dr. Anur administered the shots. Zack saved some 4th of July fireworks to set off in celebration.

He also required a blood transfusion yesterday (which meant a 7.5 hour stay at the hospital) and he recovered today by relaxing at home with the first season of "McHale's Navy."

Tuesday, July 8, 2008

June, 2008

Zack began June with a long day of chemo treatments on the 2nd (which his grandparents attended before heading back to San Francisco that evening) followed by an appointment with Dr. Weizer. 

Zack's doctors cleared him to attend a 4-day camping trip near Bend with his class. Maria was one of the chaperones on the June 3rd-6th trip which included swimming in hot springs at Warm Springs, a trip to Smith Rock, star gazing at the Sunriver Observatory (highlights included seeing Saturn perfectly positioned for viewing its rings, and the Space Station zooming along at about 17,000 miles per hour), a snowball fight at the Newberry Crater Obsidian Trail, a mile-long walk in the Newberry Lava River Cave, rafting on the Deschutes, and more...The 6th graders set up and tore down their own tents and also made breakfast, including french toast and sausage. 

June 13th was the last day of school. The 6th grade celebrated with a party and slideshow that evening.

Zack flew to San Francisco for a short visit with his grandparents from June 18th-23rd. He visited his cousins, aunts and uncles in Novato and otherwise maintained a low profile, getting some necessary rest during that break between chemo treaments. 

May, 2008

Zack completed the "Interim Maintenance" phase of chemotherapy and moved into "Delayed Intensification" in May, which meant a shift from biweekly treatments back to weekly treatments. He continued to respond well and had a busy month outside of hospital comings and goings. 

Zack was experiencing allergies so he visited his pediatrician, Dr. Jen Gibbons, ND, and received a homeopathic remedy that worked wonders in very little time. We hadn't seen Jen since November when she diagnosed Zack with leukemia and it was great to catch up with her and thank her for taking such good care of us that day... 

On May 3, Zack and his friend Gabe met Notre Dame football coach Charlie Weis at an alumni event in Portland. Both boys were thrilled to meet Coach Weis and Zack even wore the coach's enormous Superbowl ring...

Throughout the month of May, Zack's buddies Gaelan, Gabe and Edan visited Zack after school on a regular basis...

We spent Mother's Day in one of our favorite Oregon spots, the Columbia Gorge.

Zack was feeling healthy and strong enough to join his classmates and other Waldorf schools from around the country at the Medieval Games. The kids were placed into "shires" on this overnight trip and competed at target archery, sky archery, trebuchet and more. 

Zack's grandparents arrived in Portland at the end of May for a long weekend visit, during which time Maria got out of Dodge and let her parents do their grandparent thing...