Zack had chemo with spinal tap (intrathecal chemo) today and it was his smoothest of these procedures to date. His nurse said he used the least amount of pain medication/conscious sedation meds she'd ever seen for a spinal tap. Best were the small amount of pain he experienced and the quickness with which it was over. Today was Dr. Tilford and RN Jen.

Zack's blood counts are right where the docs want them to be! He's taking it easy for the rest of the day, looking forward to Ken's Artisan Pizza for dinner and tomorrow he'll visit Meigra for a Bowen bodywork session.

Zack had another chemo appointment at Doernbecher this week. We were in and out of there in an hour which must be a record for us. Dr. Malempati said Zack's doing great and Cyndi administered vincristine...and then we were off to Yuki's for tofu and home to finish homework. Zack felt nauseous later that evening but it passed quickly and he slept well that night.

We've been reading The Hunchback of Notre Dame and it ended in all its grisliness this week so we've moved on to The Call of the Wild. Zack's enjoying school. The class just finished a writing block during which Zack wrote a short story about murder and revenge in Russia during World War II. Now the class is studying chemistry.

Zack's excited about Halloween and is planning to be Skulduggery Pleasant.

Hello folks...It's been a few months (give or take) and Zack is now in the 8th grade. He spent the summer with family...and somewhere along the way he managed to grow back most of his hair. Chemo continues: pills daily and treatments at Doernbecher once every four weeks. (Thankfully, spinal taps (intrathecal chemo) are only once every 12 weeks.) 

Below are some of my favorite pictures of Zack from the past several months. I'll try (really I will) to update this blog every four weeks. Our love to family and friends. 

March, 2009 - Olympia, WA

March, 2009 - Fort Lewis, WA

June, 2009 - Portland, OR with Aunt Cathy

July, 2009 - Pacifica, CA with cousins Rafa & Mikey

July, 2009 - Portland, OR

Today was a chemo appointment with Dr. Anur...Zack's blood counts are very healthy and his appointments will continue every four weeks until March, 2011...Zack's nurse today was Alicia. She took care of Zack this summer after the ICU. It was great to see her again. Dr. Chang was also present in the procedure room for Zack's intrathecal.

It's been a couple months since my last post and Zack is now a teenager!

In February, we went to Miami for his Make-a-Wish trip. Miami was beautiful...we visited the Everglades and the Keys and swam in the ocean. Also in February, Zack played a pirate in his class play, A Pirate's Life for Me (a musical).

Zack is continuing to thrive! He had a chemo appt on Friday, January 2nd - vincristine and intrathecal methotrexate with Dr. Chang. His blood counts are healthy and he's gained about 10 pounds during the past month, weighing in at 90 lbs! He's been enjoying time off from school, spending the holidays with family and friends. 

Mission District, San Francisco

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.

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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! 

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 

During the past month Zack has been leaving his hospital stay behind him, physically, mentally and emotionally. The transition home was a very welcome change but it was also difficult because it reminded Zack of the days just before he was admitted to the hospital...and it brought back the fear of running a fever and knowing he was going to have to go to the emergency room. It's been (and continues to be) a process for him to trust that his body is in a different place now.

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!

Today was Zack's last day in the hospital. He's home!

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. 

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

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! 

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. 

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...

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! 

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

He's still taking sedation medication but lower doses of less powerful meds...so 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

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.

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

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:
http://www.betterchoiceforhealth.com

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

View from OHSU

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 mucolytic...it 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