Hooray!!!

It's been a little bit more than a year since Zack completed his treatments. All is well and I'm grateful for his health and happiness every day. Following his final chemo treatment on March 22, 2011, Zack went to NYC where he celebrated with cousins and other family members. He continues to have regular check-ins with the pediatric oncology docs --- he had monthly appointments for the first 6 months and now he's switched to every 3 months.

Zack's Cookbook

Please use the below link to remit payment via Paypal. Once your Paypal transaction is complete, I'll email the cookbook to you in pdf format asap. Thank you!!

Zack had another chemo appointment yesterday. All went well and he was at school by 11:00am. His blood counts are well within the normal healthy range but slightly higher than what his hematology/oncology doc, Dr. Loh, would like to see. Zack's at 100% dosage of the chemo meds he takes at home and his doctor would like to increase that amount. For now, Zack and I agree that we want to leave the meds as is and Dr. Loh is okay with that decision.

Only 5 more months until he's done with chemo!

Zack had his port removed this week! The operation went smoothly and he recovered easily, only slightly sore at the site of removal.

http://en.wikipedia.org/wiki/Port_(medical)

Zack's monthly chemo appointments continue with spinal taps every three months. Dr Malempati administered this week's procedure and everything went beautifully. Zack's counts are exactly where the docs want them to be and his daily meds were increased slightly, according to his height and weight. 

Here's some of what Zack's been up to the past three months:

Zack as King Rayna in the class play "Scheherazade," 

posing with Gabe, Edan and Gaelan after the final show...

5 performances in 3 days!

Zack, Gaelan, Edan and Gabe...celebrating 

Zack's and Gaelan's 14th birthdays in early January

Cheering for his fellow 8th graders' 

basketball team, The Moose

Volunteer work at the Oregon Food Bank, 

part of his 8th grade project

 

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!