Monday, May 31, 2010

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.

Tuesday, May 4, 2010

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!

Monday, April 26, 2010

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!

Friday, April 23, 2010

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.

Monday, April 19, 2010

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.
Alex's kindergarten teacher, Cristy Dratz is also shaving her head in support of Alex and St. Baldrick's. Thanks Cristy, we love you!

Thursday, April 8, 2010

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 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!!

Tuesday, March 30, 2010

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.