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!