Just Another Race to Win

2010-05-31T19:46:00.000-07:00

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.

2010-05-04T18:45:00.000-07:00

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!

2010-04-26T15:42:00.001-07:00

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!

2010-04-23T18:47:00.000-07:00

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.

2010-04-19T07:00:00.001-07:00

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!

2010-04-08T04:55:00.001-07:00

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!!

2010-03-30T16:06:00.001-07:00

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.

2010-03-23T00:46:00.000-07:00

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.

2010-03-14T18:40:00.001-07:00

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.

2010-03-03T06:21:00.001-08:00

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!

2010-02-22T01:48:00.000-08:00

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.

2010-02-08T23:02:00.001-08:00

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.

2010-01-25T01:53:00.000-08:00

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

2010-01-21T02:06:00.000-08:00

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!

2010-01-05T18:46:00.001-08:00

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!

2009-12-24T10:14:00.000-08:00

Merry Christmas from the Lews! Sorry I haven't updated the blog in a while.

Gary and the girls arrived last week just as Alex was going into his first chemo free week. As you know, the last month has been very difficult with IV chemo 4 times a week and oral chemo everyday. All of this knocked Alex's blood counts way down. The week off was a chance for his blood counts to come back up a bit. As his counts have slowly climbed so have his spirits. It helps to have his sisters here as well. He has been teasing Jessie relentlessly. They have been playing on the Wii non-stop. When the girls aren't around he's always asking, "when are they coming back?". He welcomes the company. And he's loving all of the cards and packages he has received. His AP calculus teacher, Mrs. Ueland was in Utah on a ski trip this week. We drove up to see her and she gave Alex some things from Alex's homeroom and from other friends. Thank you everyone!!!!

With his counts up a bit, he is able to start the next phase of chemo, Interim Maintenance. The doctor said Alex could have another week off to let his counts go up even more and to enjoy the Christmas holiday, but Alex wanted to get the show on the road. So we started phase 3 yesterday. For this phase, there will be no IV chemo. He will be taking oral medication for 8 weeks and have two lumbar punctures, one yesterday and another one in four weeks.

With Alex in remission and only oral meds for the next 8 weeks, this is a good time to transition Alex's care back to Hong Kong. We have one more visit with the doctor on Monday. If his counts are good enough, we'll get the green light to go home!!!! We should be back in HK by New Year's Eve!

Alex has really been struggling with Anticipatory Nausea. Anytime anyone talks about his diagnosis, treatment or prognosis around him, he gets nauseated. On days that we have to go into the hospital, he vomits constantly. If there is nothing left, he has the dry heaves. As we go back to HK and everyone is excited to see him and wants to know how things are going, please know that I won't want to discuss things in front of him. He doesn't mind talking about it himself, he just doesn't like to read the blog or hear me talk about him. It's strange but according to the doctors and nurses, this is very common. I guess he won't be doing pre-med in college. At one point he thought he might like to be a doctor, but now the thought of going into a hospital for work everyday makes him ill.

That's it for now.

May the Peace, Joy and Comfort from Him whose birth we celebrate at this Christmas season Light the way for you always!!!!

2009-12-14T14:40:00.001-08:00

Not much new to report. The weekend was spent on the couch watching the entire season one of Heroes. The three units of red blood cells that Alex received on Friday gave him a bit more energy but the nausea has been more intense the last few days. We are done with IV chemo for a while and his oral medication for this phase come will be completed on Wednesday. He will have at least one week of no chemo meds which will be nice. Hopefully his body can recover a bit. Once his blood counts are up, he will begin the next phase of chemo.

Alex has been so strong through all of this but I can tell it's been hard on him emotionally. Right now anything to take his mind off of his condition is a welcome relief but he doesn't have the energy to do anything which leaves a lot of time to think and ponder which is sometimes not a good thing so we look for distractions. How grateful we both are for technology. Being able to keep in touch with friends has been a lifesaver for both of us. We love Facebook and Skype.

Gary and the girls arrive in two days and we are excited to all be together again. As always, thanks for the love and prayers!

2009-12-10T23:10:00.001-08:00

Just got back from Alex's weekly chemo treatment. It's the last in this phase of treatment. He gets a week off and depending on blood counts, will begin the next phase (which should be a bit easier on him) just before Christmas.
His blood counts this week are way down so we have to go back tomorrow for some transfusions of red blood cells. We'll have to do blood counts twice a week now. He is what they call Neutropenic or having a low immune system.
So no crowded places and staying away from sick people (which we have been doing all along). It's strange because he has actually been feeling better the last two days but when he awoke this morning it was a different story. A part of it is the anxiety of having to go to the hospital and getting chemo. He has been vomiting all day today and was dehydrated. They gave him two bags of IV fluids in the hospital. His lumbar puncture didn't quite go smoothly either. They had to do it twice today so his back is sore. Hopefully, no spinal headaches this week. He didn't have any after last week's LP. Hoping and praying that the blood counts will come back up soon.

2009-12-04T15:37:00.001-08:00

Had a marathon day at the hospital yesterday. We arrived just before 9am and didn't leave until after 4:30pm. Alex had his usual lumbar puncture and two different IV chemo treatments along with some IV fluids and anti-nausea medication. Because his red blood count was very low he also received two units of red blood cells. The transfusions took nearly 4 hours. At least they brought in a TV so he was able to watch a movie through most of it. It was tough because he was very nauseous and felt weak all day long. The chemo area was extremely busy with lots of little kids and a newborn baby. It was very sad to see so many little ones hooked up to IVs, but the nurses and doctors are all so cheerful and positive. The next two weeks may be rough like the last two, but then it should get better.

He awoke this morning feeling a bit better and is back at his usual spot on the sofa next to his laptop. He's managed to eat some french toast for breakfast and a sloppy joe with fries for lunch. Hoping he feels good enough to walk around soon.

It's getting cold here but still no snow (which makes the 1 hour trip to the hospital much easier).

2009-11-29T19:10:00.000-08:00

It's been a quiet, uneventful weekend. Alex spent the entire weekend on the couch. He gets headaches and feels queasy when he is upright. He's been able to eat a few small meals each day. No more In-n-Out burgers for a while. It was probably too greasy to be eating right now. He has been doing some reading and has watched several movies on his computer. Thanks Janelle and James for the external hard drive. He is putting it to good use!

Gary is coordinating with doctors in HK in anticipation of bringing Alex back to HK to continue treatment. We are hoping to be back in HK after the Christmas holidays. No exact date yet as some of the upcoming treatments are dependent on Alex's blood counts. If his counts are too low in a particular week, treatment may be postponed until counts go up.

Hoping for a good week.

2009-11-27T15:52:00.001-08:00

Alex is a happy camper this morning after Thanksgiving. No turkey leftovers for him. Instead he feasted on an In-N-Out burger: Double Double Animal Style and some fries.
In-N-Out opened here in Orem, Utah last Thursday but the lines have been insanely long. We drove by several times but decided not to get in line. The other night Alex was not feeling well but wanted In-N-Out, so I went out to try and get him one. The drive through line was two blocks long and about a 40 minute wait.
I tried again yesterday, but it was closed for Thanksgiving. So today I ventured out before opening hours today only to find that it had opened early to catch the Black Friday crowds. There were only 6 cars ahead of me so I felt like we hit the jackpot!! BTW, this Black Friday stuff is crazy! Every mall and strip center parking lot was packed at 10am!!!

The weather is nice so we will see if Alex can go outside for a bit today.

2009-11-25T21:41:00.000-08:00

Happy Thanksgiving everyone! We're so thankful for all of your love and support. Thanksgiving will be a low key celebration for Alex this year. We are staying home and not joining the rest of the family for turkey. It's been a rough several days. Alex has been very fatigued and very nauseated. He went back today for another lumbar puncture and more IV chemo. Hopefully, he will make it off the couch in the next few days. He finds he's much more comfortable when in a horizontal position. Right now he is laying on the couch, eating some french fries and watching a hockey game on his computer. He was watching HKIS play in the Holiday Tournament. So glad the games were available over the Dragonnet!.

2009-11-22T15:30:00.000-08:00

Well this Consolidation phase of treatment is producing an about face in Alex. He is constantly tired and can sleep all day long. He has no appetite to speak of and no energy to do any running. We're hoping it's just his body adjusting to the new medications. He was kind of this way at the beginning of the Induction phase. The nausea is also back so he is just laying down most of the day. He is trying to eat but the interest in food is gone now that he is off the Prednisone.

We were told that during this phase his blood counts will drop more, perhaps that is why he has no energy. If they drop too low, they will give him transfusions. I guess we will wait to see what the counts are on Wednesday (no clinic on Thursday this week as it is Thanksgiving.

2009-11-19T21:03:00.001-08:00

Alex was finally able to sleep 8 hours straight last night. He is tapering off the Prednisone so hopefully the sleep will last. Prednisone has also given him acne on his chest and back as well as a puffy face from all of the water retention. The doctor says all this will slowly go away over the next month.

Alex ran 7 miles in 30 degree weather this morning, spent 5 1/2 hours in the hospital for chemo and then rode the stationary bike for 30 minutes tonight. He is crazy, but all the exercise is keeping him sane. The doctors don't seem too worried about it. He doesn't get much sympathy when he comes in and says, "I've been feeling really tired" but "I ran 7 miles this morning."

He started the Consolidation phase of treatment today. This phase includes weekly lumbar punctures as well as 4 days of medications through his port. We will go to the hospital once a week for the LP and to access his port to get the first dose of the medication. On days 2, 3 and 4 I will be administering the medication at home through his port. The nurse taught me how to flush his central line with saline, administer the medication, flush again with saline and then inject heparin into the line to keep it from getting blocked by blood clots. I was really nervous at first, but after actually doing it today with the nurse, I think I should be able to do it. My sister in law, Susanna, is a RN. She was there with me and will come over tomorrow when I do it for the first time (just in case I forget how to do it). This is all on top of the other pills Alex must take and the twice daily injections for his pulmonary embolism. I think I'm going to get a white board tomorrow so I can write a time schedule for all of the meds! It's starting to get a bit confusing.

Alex's hair is really thinning out and he has decided that he will shave his head tomorrow. My guess is he will be wearing beanies a lot which is okay since it is winter here.

Blood counts are dropping but the doctor says he is still good to go for a Thanksgiving Dinner with the family. He is really looking forward to turkey and the trimmings. We went to a wedding dinner last night and he had 3 helpings of the potato cheddar soup and ate salad for the first time in his life! He has also been eating the lettuce and tomatoes on his burgers! Not sure how long that will last but I'm happy he is open to trying "new" foods. Just like his dad, he doesn't care for desserts so more for me.

2009-11-14T16:38:00.001-08:00

Great news! The sonogram showed no evidence of clots anywhere on his legs. The doctors have said he can continue to run. He just needs to be careful that he doesn't fall. Falls can cause internal bleeding since he is on blood thinning medication. The blood thinner that he is on is given by injection. Alex will give himself the injections twice a day for at least a month but possibly up to 3 months. Since he has no symptoms from the blood clot and it was caught early, the doctors don't think it will give him much trouble. The thinners will keep this clot from getting bigger and other clots from forming. The tricky part is not having the blood be too thin when he gets his lumbar punctures.

Although, it's terrible that Alex has to go through all of this, it is truly amazing how we have found both the cancer and the blood clot before Alex had any symptoms. We truly feel blessed that our Heavenly Father is guiding us along this journey. Although obstacles appear, we seem to have the best possible scenario. That is not luck or coincidence but divine intervention.

Alex's doctor, Phillip Barnette, is a wonderful man. He is so positive and always makes himself available to us. It is a cold, snowy Saturday here and although there are several very wonderful doctors on call who have checked in on us, he came by to visit with us and to answer any and all of our questions and concerns. He brought his son along who played with all the toys out in the hallway (it's a children's hospital). We were impressed.

We should be going home in about 4 hours (after they check his blood levels again).

2009-11-14T16:36:00.000-08:00

On Friday Alex took both a PET scan and two CT scans. The doctor called us in the evening to tell us he had good news and bad news. The good news was that the PET scan showed no metabolic activity that would indicate cancer. The two nodes that were enlarged before on his chest were no longer lighting up. Basically this means Alex has responded to the treatment and he is in remission!!! Yay!!!! We are so happy about that but treatment continues.

The bad news was the CT scans showed a blood clot in his lung (pulmonary embolism). The doctor said Alex had to be admitted to the hospital right away. Alex will need to be on blood thinners to keep the clot from growing and to hopefully have the clot dissolve. This however, can take some time. They will also have to do an ultrasound of his legs and ankles to see if he has any clots there (as that is where they usually start). The thought is that the clot in his lung probably broke off from one in his legs and traveled to the lungs. The good thing once again is that Alex is asymptomatic. He has shown no signs of having a blood clot - no leg pains, no shortness or breath, no chest pains, etc.

Needless to say, we are all bummed to be back in the hospital. Alex hates it in here. He didn't sleep at all. We were admitted around 9:30pm. They didn't start drawing blood to test until 11:30pm, then administered the blood thinner around midnight after the labs on the blood came back. They came in again at 4am to take more blood! The blood thinners will be given every twelve hours so the next dose is at noon.

It looks like he will be on blood thinners for a while. Since the next phase of chemo requires weekly lumbar punctures and the thinners make bleeding much easier, they have to find a balance with the thinners so that he doesn't bleed every time he is poked. That is why they can't put him on an oral blood thinner. He will be on an injectable thinner that Alex will learn to give himself in the stomach.

That's it for now. Will update more later as we get more information.

2009-11-14T01:30:00.001-08:00

The insomnia brought on by the Prednisone (steroids) has gotten worse over the last week. It's been so frustrating not to be able to sleep more than 2 hours without waking up. For the week Alex has gotten more than 4 hours of sleep a night. He has spent a good part of most days on the couch trying to doze off. He tapers off the Prednisone for the next 10 days so that should help. The steroids also make him a bit moody, a bit puffy in the face and VERY hungry. He continues to have an interest in cooking and eating. Food is all he thinks about. With the nausea pretty much gone, he is really enjoying his meals and snacks. He eats literally all day long. He gained 1.5 kg this week.

We are at the end of the Induction phase (first phase of his chemo treatment). He just had a lumbar puncture yesterday. No meds were given through his port this week. Today we will go in for a PET scan to see if the cancer is gone. If so, he gets a few days off and depending on his blood counts next week, we should begin Consolidation (next phase of chemo) next Thursday. So far his counts have not dropped too low. In fact they were good enough for him to receive his H1N1 flu shot yesterday. We're still paranoid about germs. We wipe down everything with Clorox wipes!

Alex is beginning to shed his hair. He started shedding individual strands of it early this week but you can't really tell since he has so much hair and his hair is so long. He refuses to cut or trim his hair right now. Hanging on to it for as long as he can.

He has continued to run 6 days a week. It's the one thing that keeps him sane. Fortunately, the weather has been great here (high 60s all week). He runs on the trails at the mouth of Provo Canyon. One day this week he saw four deer while on his run. The dry crisp air is perfect for running. But it won't last for long. Snow is predicted for this weekend.

He has also been preparing to take the written test for his learner's permit. The trick is proving residency. Now that we have hospital bills with his name coming in, we'll take those in and see if it works. Once he has his permit, he can do an online driver's education class and then take his road test this summer.

His portion of the BYU app is complete, just waiting on one more piece to come in and he can hit the "submit" button. He is so looking forward to college life. We've had a lot of discussions on college majors and careers. He currently has 2 cousins applying and interviewing for medical school and one cousin about to graduate from medical school and interviewing for residency. All this and the fact that his life right now revolves around doctors and hospitals has made him think about a career in medicine. (Having said that, he can't stand going to the hospital each week for his treatment.) He has a lot of time to consider majors and careers but it gives him a reason to look ahead.

We'll post an update as soon as we know what the PET scan shows. Thanks for all of your love and support

2009-11-06T15:47:00.001-08:00

Not much new on this end. Alex did go in for chemo yesterday. The doctor says Alex is doing really well despite some of the side effects. Alex has had a hard time sleeping the last two weeks. He can't seem to sleep for more than 4 hours. Hopefully this will get better as we taper off the Prednisone next week. Alex is still running and eating so that is all good. We are scheduled to have a PET CT scan at the end of next week. That will determine whether or not he is in remission. Let's all pray that the scan will show no cancer. After the scan, we have to wait until his blood counts are high enough to start the next phase of chemo. So far blood counts have been good which means his immune system is not too suppressed. Still worried about crowds of people and the flu so we don't go out much.

2009-11-03T14:41:00.000-08:00

On Saturday Alex and I went to the Mountain West Conference Cross Country Championship Meet. It was held at Cascade Golf Course just 3 minutes drive from here. It was a great morning. The weather was perfect....clear blue skies and in the 50s. Alex was able to see the BYU teams in action although both the men's and women's teams came in second to very strong New Mexico teams. It was fun to watch these collegiate runners race. After the race we went out for burgers and some shopping at a running store. Alex then cooked a dinner of roasted chicken and stove top stuffing! After a run along the Provo River Trail, we went to a family Halloween party where Alex ate again....yummy homemade soups, homemade donuts and homemade churros. He loved the churros! Didn't really care for caramel apples though.

This cooking thing is really interesting. He is now eating things he never would have touched before. He helped me bake Apple Bread and even likes to eat it. He also made fresh bruschetta and a spinach, sausage, mushroom and onion topping to go on the french bread. It will be interesting to see if he will still eat like a horse and have such an interest in cooking once he is off the Prednisone.

He is coping with the side effects. They seem to change each week even though the meds are still the same. This week he seems to have more nausea and doesn't sleep as well as before. This phase of chemo will last for another 10 days or so.

We kind of feel like we need to get back into the rhythm of real life. But getting back into the routine of real life here is difficult since our real life is back in Hong Kong. Alex has started his early morning seminary class again, only it's not early morning for him. He does this by iChat over the computer. It's great because it's 3pm here when it's 6am in HK. We are also trying to get him a learner's permit so that he can start online driver's education classes while here. His English teacher should be sending assignments soon. All these things should help him keep busy for a while.

Thanks again for all of your love and prayers!

2009-10-29T23:07:00.000-07:00

Sorry I haven't updated the blog in a while. It's been a relatively good week. Alex has been having headaches most likely as a result of the lumbar puncture last week. He finds that if he is upright too long the headaches get worse so he needs to lay down either on his side or on his stomach to feel better. The nausea is still there as is the jaw pain but Alex seems to be able to work through it without any medication.

Alex is really into food and has decided that this is a good time to learn to cook. This week he has made omelets, french toast, crepes with an apple cinnamon filling, pan fried tilapia (fish) and scallops over pasta, okonomiyaki (japanese pancakes with lots of toppings), steak with onions and mushrooms and roasted potatoes. He has also developed a taste for smoked salmon and cream cheese on Wheat Thins and brie on crackers.
He has been downloading and watching episodes of Iron Chef America every night while he rides grandma's stationary bike. Alex has also started running again!! :) He ran 4 miles on Monday, 5 miles on Tuesday, 6 miles on Wednesday and even managed to sneak a 4 mile run in this morning before heading off to the hospital for his third round of chemo.

The doctor says he is doing well and that his blood counts are still good. We are getting a bit nervous about H1N1 and any other illnesses that are out there. As the weather gets colder here (it snowed a little this week), we worry about being around too many people. You can never be too cautious. Having said that Alex has been to the movies twice this week with a friend who use to live in HK (Rachel Barnard). They go to matinee showings where there are less people around. The open seating here at movies makes it easier to get some distance from other people.

Weekend plans include a family Halloween party and watching the BYU Cross Country team in action in the MWC meet this Saturday.

2009-10-23T23:32:00.000-07:00

A great day today. The sun was shining and Alex was smiling. He had his moments but overall he was in much better spirits. No side effects today.

It's so fun to watch him eat. He wanted to check out a burger place called Chadders (an In-N-Out type of place). He had the double burger and loved every bite of it. Then when we were in the grocery store, he tasted most of the samples they were giving out: multi-grain pancakes, spinach and artichoke dip on toasted baguettes, cheesecake & crab salad sushi rolls. As long as his counts are normal we don't need to be paranoid about eating food prepared outside so he is enjoying every chance to eat out.

He's been online chatting with his teammates who are in Guam. He is so happy for them but is sad that he is missing out on all of the fun and the sun (an opportunity to get an even darker tan)!

He's making progress on his BYU application and should have that done in the next few days.

He is playing the piano right now. It's amazing, after all those years of complaining about having to practice, it is the thing that he has turned to since being here. Parents, don't let your kids quit piano lessons.

2009-10-22T18:09:00.001-07:00

Day 8 - Alex went back to the hospital today for his 2nd round of chemo. His CBC (Complete Blood Counts) were all in the normal range, so that is good. He received two meds through his port (main line catheter) and one med delivered through his lumbar puncture. He continues with his meds (pills) at home.

After the hospital it was off to Red Lobster for lunch. Alex had quite the appetite. Before leaving the hospital, he stopped in the cafeteria for a soft pretzel with a cheese dipping sauce. At Red Lobster he had clam chowder, 2 cheese biscuits and a healthy portion of linguine with shrimp, lobster and asparagus. (He didn't eat the asparagus)! He felt a little queasy afterwards but is okay.

He is feeling bad about not being in Guam for the APAC Cross Country meet but is happy he can chat online with his teammates to see how they're doing.

Gary leaves for HK early tomorrow but should be back in a few weeks.

Hopefully Alex will not have too many side effects from this round of chemo. We'll just have to wait and see and take it day by day as it comes.

He knows I am blogging his progress but at this point he wants nothing to do with it. I know many of you are hoping to hear from him directly about how he is feeling, but right now he isn't interested.

That's it for now. Hopefully, no news is good news!

2009-10-21T19:00:00.001-07:00

The last few days have been a little bumpy. The nausea kicked in on Monday and Alex struggled to take his meds. The jaw pain caused him to have headaches as well.

Tuesday was better and Alex actually ventured out of the house for a little fresh air. The weather, though chilly compared to HK, has been absolutely beautiful. The fall leaves are incredibly vibrant with their yellow, orange and red hues.

Wednesday he walked around the campus of BYU and was excited about the prospect of being a student there next year. He is still working on his application, hoping to get that done soon.

The great thing is Alex has had a hearty appetite and has no problems sleeping. Tomorrow (Thursday) we go back for more chemo including another lumbar puncture. He is so tough he told them he would not need to be sedated for the LP. I think it's because he doesn't want to fast before the procedure!

We miss all of our friends so much but love the technology that keeps us all connected.

2009-10-18T17:38:00.000-07:00

Alex was discharged from the hospital on Friday since he was doing so well with the chemo. No real reactions or side effects and his blood counts were all normal. We did have to go back on Saturday morning for a shot (actually 3 shots) of another chemo drug. The medicines were a bit spaced out during this first week. Barring any fevers or other side effects, we don't have to go back until Thursday.

Today he is feeling a bit tired and his jaw aches (a common side effect to one of the medicines). We have a few days off from doctors and nurses but not from medications. Alex is taking between 10 and 13 pills a day at home. One of the meds he takes has to be 50mg but instead of one 50 mg tablet, they gave him 5 10mg tablets. The pharmacies don't stock the 50mg tablets. He has to take these twice a day. He is not a happy camper.

This first round went a lot better than expected as his tumor load/burden was low. The only place they could positively identify it was in the cyst on his forehead and two little growths in his chest. His bone marrow tested negative as did his spinal fluid.

It's amazing. Alex had no idea he had cancer. He was healthy and running between 45 and 50 miles a week right up until he had the cyst removed from his forehead. And now we have to make him sick with the chemo to get rid of the cancer and make sure it doesn't come back.

He is being amazingly strong with the treatment process but he is so "depressed" (his words) about not being in HK with his friends. We will do all that we can to bring him back as soon as we can but that won't happen for a while.

Thanks again for all of your good wishes and prayers. Believe me, they have helped. Continue to keep us in your prayers. I am amazed each day by God's tender mercies. There have been many and many of you have been a part of that! God Bless!

2009-10-15T17:57:00.000-07:00

Alex was admitted to Primary Children's Medical Center on Wednesday, 10/14. He had surgery to put a central line with a port into his chest. This is the line used to deliver his chemo meds into his body. The line went in without any problems. He also had a lumbar puncture done. The spinal fluid was clear. (Good sign) He was also given an injection of chemo into the spine at that point. Surgery took about 1 hour.

He was then moved to the oncology unit which was all decorated for Halloween. I keep forgetting that we are in a Children's Hospital. Apparently Lymphoblastic Lymphoma is mainly a pediatric condition although adults do get it. The treatment protocol for adults is still the pediatric protocol.

Alex received two different chemo meds via the port and then one chemo med by pill. He was also given other meds to help with side effects such as nausea. So far he is feeling fine. No nausea. We are told that he will start to feel tired and more nauseated by the end of week 2 as the medicines start to accumulate in his body. He will notice hair loss around week 3.

We are expected to leave the hospital on Saturday after he receives one more shot of chemo medication. This is good news since he wasn't expected to leave hospital until Monday. From then on he is scheduled to do chemo on an outpatient basis. Treatment for Lymphoblastic Lymphoma is 24 months. For the next month, we will return to the hospital to receive his meds every Thursday. He will also have his blood counts taken and receive transfusions as needed.

The doctor and nurses have been wonderful. Alex's oncologist, Dr, Phillip Barnette is very knowledgeable and is very personable. He spends as much time with us as we need. This whole "team" concept that the doctors in HK said we would have in the US is amazing. Today we have met with the oncologist, nurse practitioner, social worker, dietician, out-patient chemo nurse, and Alex's two private nurses. Everyone had a stack of hand outs for us and were willing to answer any and all questions. There is so much to learn about lab reports, CBCs, ANCs, etc. So much to learn about the different meds and the side effects to look for.

I am awed by all the people who have chosen to work as health care professionals. They are a special breed just like teachers. They are dedicated and so vital to society.

Alex is being such a brave soul and although it's only been 1 day, he is doing great. He misses his friends dearly.

2009-10-13T05:49:00.000-07:00

Had an appointment at Primary Children's Hospital in Salt Lake City. The oncologist has said that the diagnosis from Hong Kong seems correct - lymphoblastic lymphoma. They are finalizing a review of all the scans and slides brought with us and will confirm in the next day. On Wednesday, Alex will be admitted to the hospital to begin preparation for treatment. We'll know more after another visit with oncologist on Tuesday.

2009-10-11T06:35:00.000-07:00

Lily Lew doesn't even know where to begin.....Gary and I are taking Alex back to the US for cancer treatment on Sunday. We were told on Tuesday that he has Lymphoblastic Lymphoma. Faith precedes miracles.

Beginning the long journey ahead in a couple of hours. I can't begin to express how grateful I am for all of the love and support we have been shown in the last five days. I can't begin to imagine what this journey we call Life would be like without friends and family. Please continue to pray for us!!!! I know that God loves Alex and He has a plan for him and this is part of it.