Monday, December 1, 2008

Friday 11/28 was the one year marker for Zack's leukemia diagnosis. During the past month, we've both been remembering what we were doing last fall before he was diagnosed. Those memories - of Outdoor Ed with his class, a visit from my cousin Michael, a road trip in Idaho, Thanksgiving with family in California, etc. - have been especially acute. Zack has been through so much this past year and as his one year marker approached, those memories acted as a comparison of what has changed in his life. 

However, Zack is still Zack and that's very clear these days! He's healing in every way and I'm impressed by his resilience and strength. Every day, my thanks go out to all the family members, friends, medical personnel and school faculty who are helping my son on this journey.

Zack spent the 28th with family - his cousin Mikey, his aunt and uncle, Aleta and Miguel, his grandparents, and me. We mentioned the significance of the date once and then happily ignored it and enjoyed the day.


Today was a chemo appointment, including intrathecal and intravenous meds. Zack was sedated for the procedure so he took the day off from school. Nurse Cyndi, Dr. Suman Malempati and anesthesiologist Dr. Michael Seropian took care of him. 

Zack's appetite is returning and he weighed in at just over 80 pounds! He's been lingering in the 70s for a while so this is big news. Also, his blood counts are very healthy and his doctor is happy with his general health and strength. 

One indicator of Zack's returning strength is his renewed ability to lift me. He's been able to pick me up off the floor since he was 5 or 6 and he's happy to find he has the strength to do so again! 

Friday, November 7, 2008

Zack had an appointment at Doernbecher today. It was an easy day: only one kind of chemo (vincristine, a synthetic form of a compound found in Madagascar periwinkle) plus a flu shot. Zack's blood counts are very strong and Dr. Anur was so happy to see how healthy Zack looked, he brought Doctors Wolff and Stork to see him. 

Zack was relieved to find out he's officially more than 5 feet tall! His weight is about the same but he's averaging in the high-70s instead of the mid-70s. Nurse Rochelle took care of Zack today and he also saw Nurse Cyndi and Rowena.

Halloween pictures are posted per Dr. Anur's request!

Indiana Jones (Zack), Aragorn (Gaelan), Zorro (Edan), 
a She-Devil (Gabe), a Stormtrooper (Josh)

Zack as Indiana Jones

Halloween Haul 

Saturday, October 25, 2008

In July, the chemotherapy had taken his body beyond its limits and he couldn't fight infection. But things are different now: Zack's done with the hardest phase of chemo and his immune system will not be attacked again like it was this summer.

During the past couple weeks we were confronted with this issue when Zack contracted a cold that started in his head and moved to his lungs. He had a chest x-ray at Doernbecher...and all looks great! The radiology team said his lungs have improved dramatically during the past month! (And at this point, he's nearly over his cold.)

Here are some updates on his progress:

Zack's been doing physical, occupational and respiratory therapy at home every day. His balance is very good, he has lots of stamina and his biggest challenge is muscle strength which he is steadily gaining back.

Zack had a chemo treatment on October 10th including intrathecal and intravenous meds and he takes chemo pills at home every day (and will continue to do so throughout the remainder of his treatments). He had an appointment at the oncology clinic yesterday and a blood sample showed his counts are healthy, which means he's receiving just the right amount of meds.

Despite some initial food cravings while at Legacy, Zack doesn't have much of an appetite and is maintaining his weight in the mid- to upper 70s. (He doesn't even crave tofu much anymore!) I'm seeing a small amount of improvement as the weeks go by - and he isn't experiencing nausea like he was last year - so I'm confident that his appetite will slowly return.

Zack stayed home from school while he had a cold and while strep throat made the rounds through his class. But he's been doing his best to keep up with schoolwork: he's writing a report on Cambodia and recently finished reading a book about Ferdinand Magellan.

The topic of school has become more complicated as we found out that a higher than average number of the kids at his school are not immunized (Zack is). Though Zack's immune system won't be compromised again to the extent it was during the most intense phase of chemo, this is still a risk for him (for example, whooping cough went through his school late last year and it even infected some kids who have that immunization).

Zack loves his class, his teacher, his school...and the school community is so supportive of us. So this is a tough one and I'm weighing our options at this point...

All in all, and in nearly every way, Zack is stronger than he was just before he contracted pneumonia. He was so weak from the chemo then and it's a blessing to have him healthier than he was before his hospital stay. His cheeks have color in them again and he's growing tons of hair on his head!

Life has been more hectic and more complicated these past weeks (5 doctor appointments just this week!)...but I'm aware that it's all a gift and I'm so happy to have Zack home and well. I'm forever grateful to the doctors and nurses who healed him; they worked the best kind of magic. And I'm deeply grateful to everyone who read his blog and offered support and love during his hospital stay. I know that Zack absorbed and gained strength from your prayers and thoughts. And knowing so many people were thinking about Zack and pulling for him made all the difference in the world to me, especially when the big world of hospitals and disease felt overwhelming (which was most of the time)...From our hearts, thank you everyone.

I plan to update this blog every month or so for the duration of Zack's treatments, through March of 2011. We hope you'll party with us when it's all over!

Tuesday, September 23, 2008

Friday, September 19, 2008

We've been at Legacy Emanuel for a week today. Zack is walking, climbing stairs, riding a bike, eating (he's been craving spaghetti and burritos), reading, writing...and he's very, very ready to go home. The rehab docs are saying he might need another week or more of therapy but I think they're being overly cautious. Zack gets tired, but not too easily, and he is taking care of himself. Some things, like his balance, which is not bad but not great either, are just going to take a little more time and it will do his spirits a lot of good to be back home.  

Zack's therapists gave him an overnight pass for Saturday so we'll both be spending a night at home for the first time in 10 weeks. If the weekend goes really well, I'll take him home for good early next week and he can finish physical therapy as an outpatient at Doernbecher. 

Zack likes to wear his robe during therapy. 
Mo, one of his physical therapists, calls him Hugh Hefner. 

Friday, September 12, 2008

Big changes today...

This morning, Zack was discharged from Doernbecher and transferred to Legacy Emanuel for physical, occupational and respiratory therapy. Whereas at Doernbecher he was working with therapists a couple times a day, Legacy Emanuel has a focused program that will keep him busy most of the day. We arrived late this morning and are getting settled, meeting with therapists, etc. The rehab docs are saying we'll be here anywhere from one to three weeks.

We stopped by the Doernbecher ICU as we were leaving and were able to thank many of the docs, nurses and respiratory therapists who helped Zack. They were thrilled to see him, taking pictures and congratulating him...impressed he had come so far, so well. 

As of this morning, Zack is no longer using nasal cannulas for breathing. He's come so far in his healing to not need the extra oxygen anymore. And he's come full circle because he was using nasal cannulas the first week he was admitted to the hospital, back in mid-July. He isn't using a feeding tube anymore either so he's completely free of tubes (his chest tubes were removed this week, too). 

Zack's grandma went home this morning after nearly 8 weeks of being with us all day, every day. She arrived the first day Zack was admitted to the ICU (the second week he was in the hospital). There's no way to thank her enough for everything she did for us while she was here. Thank you, Grandma!

Grandma & Zack in the Quiet Courtyard, Doernbecher

Tuesday, September 9, 2008

Hi. It's me, Zack. I'm out of the ICU and now I'm up on the 10th floor. It's a lot quieter on the 10th floor and you get a lot more privacy. I'm feeling pretty tired right now...The doctors say I might get out of here soon. 

This is Maria again...Zack just went back to sleep so I'll take it from here.

Zack's been doing lots of physical therapy and has been able to stand and even walk a tiny bit. He's progressed from the cardiac chair to a regular wheelchair and spends time outside when possible (we're having beautiful weather in Portland). He's slowly being weaned from the nasal cannulas and is only receiving a very tiny amount of air through them. He still has two chest tubes but they're probably going to be removed today or tomorrow. Once that happens he needs to be able to walk and not need the nasal cannulas...and then we can go home. 

The hematology/oncology docs wanted to restart chemo last Wednesday, the day after he was extubated, but I held them at bay until Friday. Zack's now officially in Maintenance but has only received two of the four meds scheduled for the first treatment (one of those two drugs is a daily that he has to take long term). The docs are probably going to skip one of the meds as it's the least necessary of the bunch but Zack is going to get the other one this week (it's intrathecal chemo which means it's given directly into his spinal fluid). 

I went to the first 7th grade class meeting last night and Zack's class is starting to learn about the Renaissance Period. Zack's going to try to keep up with them and also do some math. 

When Zack's not working out with his physical and occupational therapists, he's reading (Far Side, the daily comics, Mad Magazine), listening to Elton John, kicking and punching a beach ball around, asking to have his feet massaged, etc. He's moved from watching non-stop Hogan's Heroes to Family Guy in the evenings. Not really a linear progression but it's making him laugh and he won't be allowed to watch it once he leaves the hospital! 

Wednesday, September 3, 2008

The extubation was a huge success and Zack keeps getting healthier and stronger...There's even talk of leaving the pediatric ICU tomorrow and heading back to the 10th floor. He's using nasal cannulas which supply a small amount of oxygen (without pressure) to help him transition from the breathing tube. 

Zack can talk in loud whispers and his throat doesn't hurt! He's been able to drink water and a little bit of apple cider and he may be able to start eating (broth and other mild foods) as soon as tomorrow. 

For the first time in weeks, Zack was out of bed and out of his hospital room today...He got into a cardiac chair, which looks like a tiny, narrow bed on wheels and is being used to help him get into a sitting position, and his nurse, Joyce, wheeled him out of the ICU to a courtyard where he sat in the sun for 20 minutes or so. 

Nurse Joyce with Zack

Zack's in really good spirits and his grandma and I are having a lot of fun with him, as are the nurses who've taken care of him all this time. He's doing the breathing exercises and physical therapy necessary to get out of the hospital...frequent foot massages help motivate him. 

Tuesday, September 2, 2008

Zack was extubated this morning!!! The procedure was very quick and in seconds the breathing tube was gone, thanks to Debbie, his respiratory therapist, and Dr. Needle, aka Zack's Extubation Dream Team. More later...

Friday, August 29, 2008

We were hoping Zack might be extubated this week but he's going to need a bit more time. His lungs are so much healthier these days but his breathing muscles need to be stronger before he can come off the ventilator...While he was on the ECMO machine, the ventilator was doing nearly all the work so he was barely engaging his breathing muscles. On top of that, the steroids he recently stopped taking (for lung inflammation) weakened his muscles a bit. So...Zack has started some breathing exercises to target his diaphragm and a medical student is working to find more ways to support this strength building. 

This isn't bad news, it's just indicative of how much he's been through and how far he's come along since. Some of the doctors have used the word "miracle" in regard to Zack and a little more time to heal is a minor thing when looked at in that light. 

Regarding his liver, he stopped taking an anti-anxiety drug called "neurontin" and his liver enzymes immediately dropped back to normal. Neurontin doesn't normally cause liver distress but he had just started taking it before his liver enzymes started to increase and it was the only change that coincided with it. 

As always, thank you for keeping Zack in your thoughts! 

Wednesday, August 27, 2008

Zack has been in the hospital for six and a half weeks...

He's still taking sedation medication but lower doses of less powerful he naps a lot and sleeps through most of the night, but he's also awake enough during the day to listen to music (mostly Elton John and Tom Petty), watch TV (he's watching more SpongeBob than Hogan's Heroes these days) and listen to his mom and grandma reading to him (mostly the Redwall book "Lord Brocktree")...Thank you Jim for the CDs of Elton John live in NYC. 

Zack is doing lots of physical therapy with increased strength every day. He's also been trying to write every day for the past week or so and was able to write an entire word yesterday. We sometimes play Hangman to help us figure out what he's trying to say...He talks all the time, though at this point he can only mouth words because the breathing tube rests on his vocal chords making sound impossible. Zack is fully cognizant and lets everyone know that he's ready to get out of here. 

We are hoping he'll be extubated this week, maybe Friday. His lungs are very strong and he's doing long sprints of breathing on his own with little help from the ventilator. He had another small pneumothorax outside his right lung yesterday so a chest tube was put in and the pneumo was gone this morning. (This was Zack's fourth chest tube...the other three have been removed and this new one will stay in for a few days.)

Zack's liver enzyme count has climbed over the last few days and a team of gastrointestinal docs are trying to pinpoint the cause. He had an ultrasound yesterday that shows his liver slightly enlarged but no cause was evident. 

I am so encouraged by Zack's progress and amazed at his strength and determination. He's pushing himself every day and it's making a big difference in his healing process. Nurses and doctors have been impressed with how quickly he's healing and how strong and healthy he looks. These last few days with the breathing tube are trying his patience but I keep reminding him that the worst is over and he'll be home soon. 

As always, thanks so much for your good wishes and thoughts for Zack!

Zack's Grandparents pose with his Uncle Tim 
and Aunt Monica outside Doernbecher

Tuesday, August 19, 2008

On Saturday the pediatric ICU attending physician, Dr. Jennifer Needle, decided to switch Zack from the oscillator back to a regular ventilator. Because his lungs had healed so much over the last couple weeks, she thought he could handle the switch...and he did! His vent settings are slowly being weaned down and as of this morning, he's on 40% oxygen...

The lowest setting used on this ventilator is about 30%. (Ventilators can provide as much as 100% oxygen but that amount can be harmful.)  We humans usually take in about 21% oxygen with each breath but since breathing through a tube is like sucking air through a straw, a higher oxygen percentage is used. (Thank you, nurses Jamie and Lori for the explanation.)

Along with the switch from oscillator to ventilator, Zack is on lower doses of sedation drugs. He's also off muscle relaxants again because the ventilator settings require him to initiate each breath while the machine gives him some extra oomph and oxygen. The docs are using the word "extubation" (removal of the breathing tube) a lot these days...There's no set date yet but it's definitely on the horizon. 

Regarding chemotherapy, Zack is finished with regular, weekly chemo treatments so this current illness hasn't disrupted a crucial time in his treatment schedule. The next phase is Maintenance, during which he'll receive treatments once every four weeks plus he'll have to take some pills at home. The hematology/oncology docs would like to start this next phase as soon as possible without interrupting his healing process...They plan to do a bone marrow test today to make sure everything is kosher and to help them better plan when to start Maintenance. 

Thank you all so much for keeping Zack in your thoughts. Please continue to sign the blog...Zack isn't going to remember most of his time in the hospital and aside from your comments being a huge source of encouragement and love right now, they will also help serve as a record of this time and of the people who followed his progress. 

Tina visited last week, arriving the day Zack came off ECMO and was switched to the (noisy) oscillator. She helped me find headphones for him and then she knit a cover for them.

Thursday, August 14, 2008

Zack is no longer using an ECMO machine! He was deemed ready for a trial stopping of the machine yesterday afternoon so his doctor turned off the oxygenation process (ECMO is essentially a lung bypass machine in this case, oxygenating Zack's blood while his lungs rested). He did great --- meaning his lungs are able to oxygenate his blood on their own --- and ECMO was permanently turned off. The surgery to remove the cannulas (tubes) from his veins went perfectly and he is now in a deep sedation. 

The doctors switched his ventilators yesterday too, and he is now hooked up to an oscillator. It's a loud machine but also the most gentle ventilator available. His lungs stay partially expanded while he receives many tiny, rapid breaths...Two of Zack's respiratory therapists, Debbie and Marie, compared the oscillator "breaths" to the gentle wingbeats of a hummingbird. Though the oscillator is gentle, it's an uncomfortable feeling to have your lungs always full of air so Zack will stay sedated until he's weaned off the machine. 

The next step is for Zack's lungs to heal the tiny tears that allowed air to escape...this air caused more than one pnuemothorax (collapsed lung, partially in this case) because the air gets stuck and applies pressure to the outside of the lungs. Zack has three chest tubes on the sides of his chest...tiny needles in his skin attached to bigger tubes outside his body that allow the extra air to escape.  This morning's chest x-ray showed no outside air. 

This transition to an oscillator was always part of the plan after coming off ECMO. Zack was on ECMO for exactly two weeks, which is ideal because apparently it works very well in the beginning but can often be problematic with long term use. The oscillator is LOUD so Zack is wearing earplugs but I'm going to try to find him a pair of big headphones to muffle the noise. 

Zack is on the right track!

A Visit from Zack's Aunt Cristina

Sunday, August 10, 2008

Zack's having some great, stable days...His lungs are sounding much clearer and he's able to take bigger breaths. The doctors have done some tweaking of his various medications as his body tells them what does and doesn't work...Yesterday's attending physician said the job of the medical team is to "entertain patients while they heal" (and the ICU does sometimes feels like a 3-ring circus), but Zack's many doctors and nurses are working together to cover all bases and make sure his body gets all the support it needs.

Zack's bilirubin count went down this morning for the first time in a while...a very good thing. He's no longer taking a high dose of the antibiotic that may have been responsible for that spike. His gall bladder was showing some stress and one of the reasons for this could be a (preventative) anti-fungal medication which has now been switched to another that doesn't tax the gall bladder or liver.

Meigra Simon visited today and did a Bowenwork (bodywork) session with Zack. Meigra's been working with Zack (and me) since his early days of chemo and her work has been consistently healing for him...I'm so grateful to her for coming to the hospital to support his healing. Here's Meigra's website for anyone interested in learning more about her work:

Today's "sats" are in the mid-90s and higher...As I'm typing this, he's "satting" at 97!

View from OHSU

Thursday, August 7, 2008

Zack is continuing to heal...his lungs are able to take in greater volumes of oxygen with each breath. His "sats" (saturation of air in his bloodstream) are also improving. The respiratory therapists are now using a combination of mucomyst (a thins mucous) and albuterol (to opens his lungs) to help him clear out his lungs.

On Wednesday, the docs decided to stop administering muscle relaxants. Zack is still heavily sedated but when he's not sleeping, he's very aware of his surroundings and is able to communicate with me. Lots of head nodding today helped me understand his comfort level (he's comfortable and not in pain!)...the breathing tube is resting on his vocal chords so he's not able to speak but he did mouth a few things today, helping the nurses better see to his needs. 

Another good thing about not being on muscle relaxants is that Zack is able to cough on his own without help from respiratory therapists...our own coughs are the best way to clean out our lungs.

Thank you to the Cedarwood community for the event that took place on Wednesday night. Your well wishes and healing thoughts for Zack are appreciated. 

I'd like to invite everyone to take some big, deep breaths of healthy air for Zack and send that healing oxygen to his lungs. I've been doing this every time I get a chance to go outside and I know he feels it. 

Thank you everyone for your love and support!

Zack's Grandma and Courtney

Tuesday, August 5, 2008

Zack's lungs are continuing to heal while doctors, nurses, respiratory therapists, surgeons and ECMO technicians continue to support him during the healing process. Today, he had a minor procedure to remove a mass (which turned out to be a blood clot) from his right lung. His ECMO technician yesterday and today was Debbie and she spent a lot of time helping him cough and clear out his lungs...All of this helps his lungs expand more fully when he takes in air. The professionals call it "recruiting" his lungs. 

Debbie, Respiratory Therapist & ECMO Technician

Zack has a slight liver imbalance so a gastroenterologist has been working to narrow down the cause, which is probably the ECMO machine itself. Zack's liver will normalize once he no longer needs ECMO. 

Surgeons added extra stitches to his ECMO access points yesterday and today. Since he's taking blood thinners (which is necessary for ECMO) it's important to stem any bleeding as much as possible...and it has vastly improved. 

Zack's had some visitors during the past few days...His grandpa left for home this morning after staying with Zack for a week...he'll be back soon; Grandma is still here and spends a lot of time with Zack; Usha did acupressure for Zack (and brought a delicious home-cooked meal for Maria); Donna visited again; Frank came from California and spent some time reading to Zack; and Courtney also came to visit from California. 

Frank visits Zack

Sunday, August 3, 2008

More good news! The head physician of the pediatric ICU said he sees "dramatic improvement" in Zack's lungs per this morning's x-ray. Zack is on a steady healing course and it's definitely working for him.  Taking Zack off the ECMO machine is in the foreseeable future and will hopefully happen some time this week, as soon as his lungs show they're ready to oxygenate his blood on their own. 

Zack had lots of visitors this weekend, including his uncles Miguel and Michael, Grandma and Grandpa, Brian Armstrong, Suzy Happ and Zack's teacher, Donna Blaser.   

Zack's uncles, Michael and Miguel

Friday, August 1, 2008

Zack is continuing to improve! He is still sedated and on the ECMO machine, his vital signs are strong and his chest x-rays continue to show steady improvement in the health of his lungs. 

Zack is responding to voice. I've been reading to him --- "The Samurai's Tale," by Erik Christian Haugaard --- and so has my mom --- "Warriors: Into the Wild," by Erin Hunter...The oxygen levels in his blood increase when he's listening to us read and his heart rate and blood pressure slow down a bit too. 

Thanks so much for your comments, emails and text messages. I've been reading them to Zack. You can also leave me a voicemail message and I'll play it for him. 

Wendy Votroubek, Dave Johnson and Brian Armstrong visited Zack yesterday. Brian even called upon his paramedic training to help Gina (shown, a respiratory therapist) and a nurse reposition Zack.

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...

Tuesday, April 22, 2008


Zack went to school today and stayed all day, attending main lesson (Middle Eastern history), games class, Japanese, choir, handwork and band. This was Zack's first full school day since January! Though a bit tired, he happily ended the day with a relaxing visit to Meigra.

Wednesday, April 16, 2008


Since my last post, Zack has received more chemo and more massage from Meigra...He continues to respond well to treatment and his weight continues to slowly increase. He is nearly a month into the phase of treatment referred to as "Interim Maintenance I" which includes chemo administered via IV, shots and spinal taps, the latter of which is next scheduled for Monday, April 28th.

On Friday, April 11th, Ms. Blaser visited Zack with gifts: a quilt made by his class with the help of Maeve's mom, Rebecca Rothery, and grandmother, Debbie Rothery. It's a very beautiful and unique gift, each square designed by a classmate plus a square that features a poem from Ms. Blaser and a square signed by Cedarwood faculty. Zack is so grateful.

Ms. Blaser also brought a mobile made of 1,000 cranes, each crane created by a student, teacher or family member from Cedarwood. The bright and beautiful mobile is hanging in Zack's room. Thank you to everyone who created it.

Zack returned to the Bay Area on Friday, April 11th for a quick weekend trip to see Frank Ferrante in "An Evening with Groucho" for the 5th time...and it just keeps getting better! Zack's grandparents, Aunt Cristina, Uncle Miguel, Aunt Aleta and cousins Jasmine and Michael also went to the show...While in the Bay Area, Zack spent an afternoon with his buddies Jarrett and Kyle and visited Luanne, Mike and Abbe Lane.

Our trusty old Saab sang its swan song recently and we owe a very big "thank you" to Travis at Atomic Auto for finding us a car...we are so grateful.

Saturday, April 5, 2008

Brighter Days...

Zack has been improving daily since my last post! He was approved for and received chemo on Friday and Saturday, March 28th and 29th. He experienced some nausea but it didn't last...In addition to his doctors at OHSU Doernbecher, Zack is now being treated by Dr. Ken Weizer, a Providence Hospital-based naturopath who is focusing on Zack's digestive system with truly remarkable results. He is gaining weight, his cheeks are rosier, he has more energy, and he feels more like his normal self every day...Our sincere gratitude to Jan and Usha for recommending Dr. Weizer...Zack is also receiving massage therapy from Meigra Simon, a wonderful lady who introduced us to a healing technique called Bowenwork...this very gentle massage is used to treat the after effects of chemotherapy (among other things). Zack is a big fan. We are very grateful to Meigra...and to Heidi for introducing us to her.

Spring break included a trip to the Bay Area where Zack nearly ate his weight in tofu, much to his delight...During our stay, he went to Frontierland Park with Tina, Maggie & Stella, enjoyed a visit from Kate & Gary and an Easter visit from Olivia, Laura & Carlos, went to Millbrae Pancake House with Bob, Jana took him to the movies with Carter, he walked on the beach with Courtney & Mike and Mocha & Maya, saw Carol, Tony, Frank Navin and Jill, and spent Easter with our relatives. He is looking forward to seeing more Bay Area buddies when he visits again this summer...

A very big "thank you" to the families who brought us meals...We love you!
See Meal Calendar here:

Tuesday, March 18, 2008

Another Reprieve...

Zack's chemo treatments were again deferred due to low blood counts...His next appointment is Friday, March 28th.

Wednesday, March 12, 2008

Chemotherapy Interruptus

Zack was scheduled to begin a new round of chemotherapy yesterday but his blood counts weren't high enough and he was given an extra week to let his body recuperate. Chemo is now scheduled for next Tuesday, March 18 (and next Wednesday --- 2 days of treatments in a row...). Also, his weight went down again due to nausea coupled with a lack of appetite.

"...but I can't see the stove."

Week of March 3rd...
Zack and I drove to the Seattle area for a few days...On Wednesday night, we went to a special 75th Anniversary screening of one of our favorite movies, "Duck Soup," and on Thursday night, we saw "An Evening with Groucho," making this our fourth time seeing the latter show (and still counting...). Follow the below link to read an interview with Frank Ferrante featuring Zack and yours truly:

We had a great time in Seattle and Kent and returned to Portland for a Friday afternoon movie party hosted by Zack's teacher, Donna Blaser. The desks in her classroom were pushed back to make room for bean bags, snacks and Zack's classmates. Here's the text of the invitation sent out by Ms. Blaser:

"There will be a grade six social this Friday to spend time with our dear friend Zack. We will gather at 3:15 (right after school) in the classroom to watch the movie "Princess Bride". This will give the class an opportunity to spend some social time with Zack without him feeling pressure to entertain them all (Zack has always loved to entertain us all- and we look forward to a time when he has more energy to do it again!)."

Monday, March 3, 2008

Catching Up

It is my plan to update this page with news of Zack and his progress during chemotherapy. Thank you to all of you who've used a myriad of different ways to send us your love and support. We love you, too. And we welcome you to add comments, questions, etc.

Zack is doing very well and is happy to know that beginning March 11, he will be switching from weekly chemo treatments to a 10-day schedule.

Below is a brief break-down of the last two months...though much of it is a blur to me.

...was a bit of a tough month, during which he experienced a lot of nausea and very little appetite. The Make-A-Wish Foundation granted him a wish: a trip to Miami. He initially wished for a trip to Thailand, but was happy to choose Miami as an alternative. Marianne and Tyler, Zack's Make-A-Wish team, are helping him plan the trip to include visits to the Keys, the Everglades, and more...Toward the end of the month, we spent a few days visiting the coast of Oregon where we watched the lunar eclipse from our hotel room and went to "An Evening with Groucho," a show we've now seen 3 times and counting...Zack wasn't able to go to school during February but he didn't miss any of his classmates' basketball games. Go 6Up!...Our February visitors included Zack's Grandma and Mary Armstrong, Zack's Aunt Cristina, Maria's cousin Karen and her boyfriend Jason, Brian Armstrong and teachers Donna Blaser and Heather Pearl. Many Cedarwood families brought us delicious, wholesome meals...And Zack used much of his downtime to become a "Hogan's Heroes" aficionado.

..Zack turned 12 and his grandparents visited for his held the very successful "Zack Day" fundraiser and we are very, very grateful to them and to everyone who participated...Courtney and Mike visited and we saw Michele for the first time in a couple of years.