Well Alex has been on maintenance chemo for four weeks now and things seem to be going well. His hair is growing in a bit and he seems to have no major side effects other than a constant queasiness. He is learning how to manage the nausea. He knows when he can and should eat and when the best time to exercise is. It appears that running in the morning makes him very nauseous whereas running late at night a couple of hours after dinner is fine. Certain foods set him off as well so he is learning to manage all of that. Right now he is still not at 100% dosage on some of the meds. We hope that as they increase the dosages, he won't get sicker.
He has also been working on his tan. He is so dark but looks so healthy.

The last Hong Kong chemo treatment was yesterday. All went well and we are so glad that medical team here at Queen Mary Hospital was able to follow the protocol as outlined by our US doctor. In the end the two protocols were not that different so it was fine. We will miss having to only pay $100 HKD ($13 USD for each visit) and having all of the chemo drugs and other medications included. There is something to be said for Public Health. We only had to pay for one particular drug ($3,000 USD) and the PET CT scan ($1,500 USD). The drug in the US cost us over $4,000 and the PET CT costs $6,000! So even when we do have to pay here, it's a lot cheaper.

This is a big week for Alex. It started on Sunday with a Baccalaureate Service and the Senior Dinner. It was a wonderful evening to kick off graduation week. Alex will present his Senior Project (getting fit after chemo) on Wednesday, speak at the Senior Community Gathering on Thursday and then finally attend the Senior Breakfast and Graduation on Friday. And in between all of this are some other celebratory dinners and gatherings. It is a fun time and we are all enjoying his accomplishments.

We all return to the US for the summer in a couple of weeks. Alex is looking forward to getting his Driver's License. Not sure I am ready for that. It's nice that we are starting to look forward to the normal things in life. There is still 16 more months of chemo but as always we will take it a day at a time.

Alex has had a great week. He spent all day last Wednesday at the Aberdeen track watching the HKIS Track Team compete. It was a gorgeous spring day and Alex took full advantage of the sunshine. His shirt was off the entire time and he came home with a red bald head and tan body. The red head soon turned into a nice tan base to head. He then spent a couple of hours over the weekend at the beach to build on that tan. He is looking quite healthy! As he feels better, he is venturing out more which is good. He hasn't been too consistent with his running but I'm sure that will come.

Counts finally came up enough to begin Maintenance Chemo. We started yesterday and it was hard for all of us to gear up mentally for it. It's been a nice respite for Alex not to have to take any drugs for the last 3 -4 weeks. Yesterday, he had a lumbar puncture and Vincristine. He is also starting up on all of the oral medication. Yesterday, he took 18 pills in all. That was difficult to know that he had to start up on the pills again. The bulk of the pills are steroids and they only need to be taken for 5 days of every 28 days. The rest are either chemo drugs (every day), antibiotics (precautionary- 3 days a week) and acid reducing medication (to be taken with steroids). He didn't seem to feel too bad after the lumbar puncture. We'll see if he gets a spinal headache today. They are also starting the 6-MP (chemo drug) at a lower dosage and will increase as we go. This is the drug that has us worried since it made Alex so nauseous before. Hopefully with the rest and recovery time he has had, he won't experience any side effects. Fingers crossed.

Prom is in a couple of weeks and graduation is a month away. Glad he is able to enjoy what is left of his senior year. In the meantime, I'm sure he'll be working on his tan!

Alex is running again!! It's been about 5 months since Alex has been running so it was a surprise to come home this afternoon to find Alex gone. He decided he wanted to go to the school and attend the track and field team practice. Instead of taking a taxi or bus to the school, he ran up and down the trails behind our house to the school. If you have ever gone from Repulse Bay to Tai Tam on the trails you know it's not a simple little run or hike. Not bad for a first outing after all the chemo he has been through. Tomorrow it's back to the hospital for blood counts. Hopefully counts will be high enough to start his first maintenance treatment later in the week. He's hoping to time things so he can go see the team race on Wed and join friends for the opening night of Iron Man 2 on Friday. I guess that means chemo on Thursday! Now if only his counts will cooperate!

Alex,Ryan and Bryan

Great news yesterday!! Alex's PET CT scan showed "no evidence of residual disease" and "no pulmonary embolism (was) found". It came back all clear so he is I guess "in remission" although no one used that term yesterday. We thought he would begin Maintenance chemo after the weekend as i thought his counts would rise to where they needed to be. We were close after the last blood count but yesterday's counts dropped. The nurses said that was normal and that he probably hadn't "bottomed out" yet. It takes a while for the counts to sort themselves out. So we'll do counts again on Tuesday and go from there. The nice thing about delaying the start of maintenance is Alex doesn't have to take any medication while he is waiting. And he is completely off the blood thinning injections!! It's a nice little break.

On Thursday, our school, Hong Kong International School, hosted St. Baldrick's Day. It's an event where people volunteer to shave their heads and raise funds for childhood cancer research. Students, faculty and staff and even some parents participated. Several of Alex's friends and his former Kindergarten teacher, Cristy Dratz, shaved their heads to raise money. It was a great event and we were touched that many people shaved and donated in support of Alex. I have posted some photos and will post more as I get them.

Once again, thanks for all of your love, support and most of all, prayers!!!!!! We have not traveled this journey alone. We know that our Heavenly Father has been with us every step of the way and that our burdens have been lifted by our Savior Jesus Christ who bore our pains and our sorrows.

Well today is Alex's 18th birthday! It's been a good day. The sun finally came out. It's been so gray lately here in HK. Alex celebrated his birthday with friends at Dylan Nisky's home. It was great to see him spending time with his friends.

We were expecting Alex to begin his Maintenance treatment last week but his counts had not recovered to the necessary levels. I guess we misunderstood and thought that he would start a week after his last IV chemo treatment. The doctor said that it was normal for counts to drop quite a bit at this point and it was necessary for him to recover before beginning the next phase. It's been a nice break for Alex not to have any chemo whatsoever for the last week. After the last IV dose, he still had oral chemo up until last Monday.

Tomorrow we will go in for counts and for a PET CT scan to make sure everything is clear including his blood clot. He stopped taking the blood thinners yesterday and if the clot is gone, we are done!!!!

Over the weekend Alex learned that he was awarded a full tuition scholarship to BYU. He was very excited about that. Everything is falling into place for college. One of the stipulations of the scholarship is that he must take at least 14 credit hours per semester. Alex is a little concerned that he may not be able to handle it if he is still having chemo. Since we haven't started maintenance yet, we don't know how he will be affected by it. The monthly lumbar punctures may cause spinal headaches for a few days so we will see.

A few of Alex's friends including Ryan Carlson will be shaving their heads this week in support of childhood cancer research. Pretty amazing since these boys will be bald for prom and graduation. They have formed Team Alex and are raising funds for St. Baldrick's. https://www.stbaldricks.org/teams/mypage/teamid/67657
Alex's kindergarten teacher, Cristy Dratz is also shaving her head in support of Alex and St. Baldrick's. Thanks Cristy, we love you!

We are finally done with Intensive Chemo!!!! It's been a long and intense six months.

We have been to the hospital 10 out of the last 12 days!! Alex will begin the maintenance phase of his treatment next week. The doctor said they will do a PET CT scan in a couple of weeks to make sure there is no sign of cancer. He still needs to be on the blood thinner until after the scan. Alex wants the port-a-cath removed but the doctor here suggested we do that back in the US as it is not something that is done regularly here. I was surprised to hear him tell me that, but I am glad he was honest enough to suggest it.

The main thing now is to get Alex over the nausea. He is so sensitive to the medication and the whole psychological thing (anticipatory nausea) makes it difficult to treat. Most people do not have any nausea in maintenance so we hope that is the case for Alex.

In the meantime, Alex still needs to be careful as it will take a few weeks for his counts to come back up and for his immune system to be back up to where it should be. He's looking forward to getting back into shape. You should see his legs. I wish I had his legs....so skinny!!! But he would prefer some muscle tone.

We have been so blessed through this journey thus far. The peace that our faith brings has been incredible. I have felt the presence of my Heavenly Father every step of the way!!! Your prayers, good wishes and positive thoughts have carried us through and the numerous acts of kindness have made going through this so much easier. Rarely have Alex and I had to make the journey to the hospital alone. Both in Utah and here in HK, people have insisted on taking us to our appointments (even when taxi's here in HK are plentiful). The notes, phone calls, yummy treats, flowers and gifts have been such lift to all of us!!!

Continue to join us in our prayers for Alex as we are not entirely done with the journey, but at least the hard part is done!!

Today is Day 3 of Reconsolidation. After a slight delay because counts were too low, Alex began the last phase of his intensive treatment on Monday. We were in the hospital from about 9am on Monday until 2pm on Tuesday. In that time, Alex received chemo through a lumbar puncture, IV and oral meds. In all, he received 4 different chemo drugs as well as a precautionary antibiotic, a precautionary anti-inflammatory for the bladder, anti nausea medication and blood thinning medication. He was also given hydration fluids for 20 hours to help flush everything through his system.

Alex was feeling pretty good going into all of this, so hopefully he won't get bogged down by the nausea. If we can keep that at bay, he will be fine. A lot of this is psychological as well as physiological so we are trying to stay as positive as possible and keep him distracted.

It's been nice that Alex can focus on the future a bit. Last week he selected his dorm room for fall. He wanted to be in the same room he stayed in for Cross Country camp last summer (Room 1210 of Merrill Hall). His assigned time to log on was at 5:30 AM Hong Kong time (3:30pm Utah time). He was barely awake but managed to log on and navigate the system to get to the hall and floor he wanted and sure enough his room was available. He was very excited. His good friend, Ryan will be two doors down from him. They decided not to be roommates so they could meet other people but I'm glad they are on the same floor. Ryan has been a tremendous friend and support through this journey.

We are now in the middle of Season 3 of Top Chef. We watched 4 episodes while at the hospital and two after we got home. This would've been a very different journey without this whole food/cooking thing. There's usually not much common ground between a 17 year old boy and his mother, especially if his whole world was running and hers was not. These food shows have helped so much in that they've captivated our attention and have given us something to focus on that's not cancer related.

The mouth sores are finally gone! It has been a painful and stressful two weeks. First, it was sores on his tongue then dry mouth. When he used the mouthwash that the doctors prescribed he would get temporary relief only to have increased pain when the numbness wore off. Dry mouth then gave way to over productive salivary glands. For several days Alex was chewing on a washcloth constantly. Then the sores inside his mouth started and those were painful. The painkillers made him loopy so he refused to take them. After days of shaved ice, popsicles. milkshakes and bland noodles, Alex has been eating up a storm of pizza, spicy chicken wings, barbeque ribs, cheesecake, and much more for the last 3 days!

We went in for blood counts today as the next round of chemo was supposed to start tomorrow. It was the first time in months that Alex went to the hospital without getting nauseated and sick. The nurses instantly commented on how well he looked. The blood counts showed his neutrophil level was too low to begin chemo so we will wait a few days before doing blood counts again. Although we would have liked to get the next phase over with asap, it's nice that Alex has a few more days off while he is feeling so good. He has lost a bit of weight so maybe he can put a few pounds back on in the next couple of days.

In the last few days, he and I have watched Season 5 of Top Chef and all 10 episodes of Top Chef Masters. We are having a great time watching TV (actually the computer) together.

As I write this blog entry, I am sitting on the floor, in the dark, outside my bedroom door just in case Alex needs me. He is finally asleep after being up all night with painful mouth sores. It has been a difficult few weeks for Alex. We managed to get the nausea and vomiting under control but then the mouth sores (actually tongue sores) started. He didn't really have these during the initial induction phase but re-induction has been rough. The sores are all along the entire edge of his tongue. We are trying everything....rinsing with salt water, rinsing with prescribed mouthwashes, pain killers, shaved ice, popsicles, milkshakes, etc. The good thing is he has still been able to eat. The steroids make him constantly hungry. Hence, my days are filled with sourcing, preparing and serving whatever he craves. And the cravings change constantly. I think a lot of it, however, has to do with how his mouth is feeling. Once the mouth sores started, all of the chips and dips (including salsa, hummus, onion dip, etc) went out the window. Once the vomiting stopped, he wanted milk and yogurt and ice cream. This was well timed since dairy helps coat the mouth sores. Roasted potatoes gave way to mashed potatoes.

His fascination with food is interesting. We have been able to find (on the internet) episodes of Man vs. Food (travel network) and he has loved watching the food challenges. We also subscribed to the Asian Food Channel so that has been fun. He said food was his only source of joy right now so I find myself giving him whatever he wants, whenever he wants it. Boy, will he be in for a surprise when he's in the dorms and mom is not around!

Speaking of dorms, Alex is looking forward to college life. He gets to select housing next week and sign up for classes a few days after that. It's been great to have something to focus on. He has been "hating life". He struggles with why this had to happen to him. Tough life lessons for a 17 year old. We talk a little about trials and adversity and how it makes us stronger. We talk about doing hard things and enduring our trials well. We talk about our blessings in spite of his trials. We try to put it all in perspective. Sometimes he gets it and sometimes he wallows in his own self pity. That is okay. He is an amazingly strong young man. And he will be even stronger when all of this is done.

He is finished with the first part of Delayed Intensification. We are in the middle of a two week break and then he will start the second part. That will last for two weeks but will be tougher in that those particular chemo drugs will be given for 4 straight days with three days off and then 4 straight days. After that, he gets a little break and will start the maintenance phase of chemo which will last until Oct 2011. The maintenance phase is expected to be much milder and he can go about a normal routine. We are all looking forward to that.

The hardest part for me as a mother is to see him suffer so much. I wish I could make it all better with a kiss but I can't. So instead, I rub his legs and feet while he's on the couch all day. I rub his back when he can't sleep. I keep him company by watching cooking shows and the Simpsons. I run to the store every time he thinks of something he wants to eat. I'm treasuring every moment because I know the minute he is better he will be out the door and I won't have this one on one time again.

Today is Day 14 of Alex's Delayed Intensification phase of chemo. We went to the hospital for more chemo. It was quiet in the clinic so they were able to get things going pretty quickly. But it still took about 3 1/2 hours. One of the drugs takes an hour to give but before and after each drug they give saline to flush the line. The nurses are getting the hang of accessing his port. For all but 2 or the nurses there, they have never accessed a port. All the other kids have a central line outside of their bodies (a tube that is attached to their chest). Those lines have to be flushed every 3 days and the kids have to be careful when bathing and can't swim. Alex's port is all under the skin and only needs to be flushed once a month when not in use. They inject a needle that is attached to the tubing each time they need to administer chemo. Once he is done, the port is de-accessed and he doesn't have to worry about a tube sticking out of his chest. The nurses hate it. They are just not use to it. So it takes extra time to find someone to access and de-access him each time we are there.

His white blood count plunged this week and he is again neutropenic so we have to be real careful about infection. Trying to keep everyone in the house healthy. The steroids are once again making him hungry so he is eating much more frequently which is good. But we're having to be careful about foods now since the doctor says infections often come from a patient's own system and sometimes bacteria in the digestive tract and in the mouth. They pretty much don't want him eating fresh fruits, cheeses, etc. Everything needs to be cooked. He wanted bruschetta so we had to put the basil in boiling water to kill any bacteria. The tomatoes also went in the boiling water to make skin removal easier. We are learning to be creative!

Over the weekend several friends came over to visit and celebrate his friend James' birthday. It was nice to see Alex smiling and forgetting his troubles for a couple of hours. He also went over to his friend Dylan's house for a couple of hours. That was the first time he has been out in nearly two weeks. But now that his counts are down, he is pretty much homebound. Thank goodness for his computer and the internet. He watches movies and chats with his friends on the computer since TV in HK is so bad. We had no Olympic coverage here but Alex was able to watch some hockey, speed skating and ski jumping online.

Guess that's it for now. Will update you when there's something noteworthy!

The last week has been a bit hectic. Alex went in last Tuesday (Feb 16th) for blood counts. Although he had been feeling pretty good for about 10 days, Alex awoke with nausea and dry heaves! Definitely the Anticipatory Nausea. His blood counts were good and so he began the Delayed Intensification phase of his treatment on Wed (Feb 17th). The drugs were basically the same as he was given during the Induction phase in the US. Alex couldn't eat or drink while in the hospital. The place really gets to him and he is constantly nauseated while there. Once home, he is able to eat and drink and is able to keep some of it down. It's amazing both in the US and here in HK, the other children (pediatric oncology patients) don't seem to have the nausea. For some reason Alex is very sensitive to the drugs. Plus, I think, he is old enough to be scared and so mentally it's much more difficult on him than the other patients.

He still doesn't like to talk about his condition or his treatment so we don't talk about it other than what has to be done and when. Fortunately, he has some other things to think about. Alex received his acceptance to BYU-Provo on Wednesday before he went in for treatment so that was nice to have something else to talk about and focus on. We are all very excited and happy that he can plan for next Fall.

We were back in the hospital on Saturday for 7 hours while he received yet another chemo drug. This is one that is administered over a 2 hour period. So what did we do the other 5 hours you ask? We had to wait for nearly 3 hours before the chemo was even delivered to the nurses from the pharmacy. We are learning that there is no need to get there before 11:30am no matter what time your appointment is. The pharmacy doesn't deliver the chemo until after 11:00! After Alex was done with the chemo, he had to be observed (for allergic reactions) for another hour then we had to wait another hour for a doctor to show up to write up the order to de-access his port and discharge him! We will go back on Wednesday for more treatment.

The nausea is back and Alex is having a hard time with it. Today has been a particularly bad day. He can't seem to keep anything down which is a problem because he has pills to take 3 times a day with food. He is on steroids again but this time it's Dexamethasone. He also takes an antacid because of the steroids, an antibiotic to prevent a certain type of lung infection and he is still on blood thinners to prevent clotting.

All in all, he is doing okay. It helps to have the distraction of sisters in the house and to be back here in HK.

Alex has been feeling much better since last Thursday. He had his last dose of 6-MP (oral chemo drug) on Tuesday evening. Forty eight hours later, he was feeling much better. The nausea and vomiting are pretty much gone as the medication works its way out of his system. He seems to have more energy and is more engaging. He tries to go to school when he can but it's hard to get motivated when you know that pretty soon the whole process starts over.

The next phase is scheduled to start next week so we are making the most of it. He has been enjoying all the greasy foods his system has not been able to tolerate: pizza, chicken wings, McDonalds, etc. He's been asking to go to Korean BBQ so we will do that this weekend. Also asked for curry so we are having that tonight.

Will post an update once we start the Delayed Intensification/Re-Induction phase. We wish everyone a Happy, Healthy and Prosperous Year of the Tiger. Chinese New Year is on Feb 14 (Valentine's Day) this year.

Alex's friends designed the squares for this friendship quilt. 88 squares of support and positive energy!!

Sorry we haven't been good about posting updates on the blog. When we were in the US, I guess I thought of the blog as a way of letting everyone in HK know what's going on with Alex but I suddenly realized all our family and friends in the US (as well as HK) are probably checking the blog. Sorry about that!

As I mentioned before, Alex is now in the Interim Maintenance phase of his treatment. This is a milder phase with mostly oral medications (still chemo drugs) and a lumbar puncture once a month. During this phase the body has time to recover and blood counts can come back up a bit. Alex has been to the hospital here in HK 3 times for blood counts (good and improving each time) and once for a lumbar puncture and to have his port flushed. We are finding that although we can continue his treatment here, the way things are done are a bit different. Nothing major but it seems like we spend a lot more time waiting around for doctors and results.

Although Alex should be feeling fine during this phase, he is actually still very nauseated and vomits frequently. The doctors are not sure what is going on as he has been on anti nausea meds and they don't seem to help. The doctor here has reduced the dosage of his chemo drugs hoping that will help. A lot of it is anxiety so that is tougher to deal with than simply reducing his meds.

Since being back in HK, he has met up with some friends and has gone out a little bit. For the most part he is at home resting. He will try going to school but is afraid he can't control the vomiting and he says he has difficulty with reading. Things seem muddled. He'll be taking two classes. This way he can have something to focus on besides his health and graduate! The school has been amazing in working with Alex. Hopefully, he can enjoy what is left of his senior year.

Delayed Intensification (Re-induction and Re-consolidation) will start on February 17th. This means everything we did in Utah will be repeated for another 7 weeks. He's been through it so he kind of knows what to expect. After that he will be on Maintenance for the rest of the 24 months from when he started chemo. We have been told Maintenance should be very easy. Life should be pretty normal. We just need to fix the nausea.

We'll keep you posted!

Happy New Year Greetings from Hong Kong!! That's right, Alex and I arrived back in Hong Kong on New Year's eve.

The few days from Christmas eve until just before we left were difficult for Alex as the nausea kicked in. He wasn't able to keep any food or liquids down and lost about 4 pounds in a couple of days. We checked in with the doctor on Monday, Dec 28th. His blood counts were okay enough to make the trip home, but he was a bit dehydrated so they gave him IV fluids to help him out.

It was a bit hairy at the airport in SLC as Alex was having a hard time so early in the morning. He said, " We should've waited. I can't do this." Our flight was just before 7am so that meant getting up at 4am and heading out of the house by 4:30am. There was a snow storm that morning so the roads were pretty bad. But he managed to get on the plane and slept on the way to San Francisco. Once at SFO, he parked himself in a chair and tried to rest. Gary, in the meantime, managed to get Alex and I upgraded to Business class. Once Alex heard this, he was all excited. For the first hour on the plane he was like a kid in a candy and toy store. He kept commenting on how roomy it was and how nice it was that the chair could be made into a flat bed. The distraction was a welcome respite from all of the nausea. For the first time in days, he drank and ate and was able to keep most of it down!

Since being back in HK, Alex has been able to meet up with a couple of friends and spend time reconnecting. School has started but everyone is preparing for finals week next week so Alex is not back to school yet.

We met with the doctors here yesterday and they seem confident about continuing his treatment here as outlined in the protocol from the US. Alex still has a hard time mentally with doctors, nurses, hospitals,etc. Although the nausea seemed to be getting better over the weekend, he had a hard time yesterday at the hospital. Once home, it was much better again.

Guess that's it for now. We are trying to get into a routine now that we are home.

Thanks again for all of your good wishes and prayers. We wish you all a Happy and Healthy 2010!