Welcome to our site

The content from 2003 to 2010 has been transferred over from our previous web host. So, on occasion, reference will be made to menus and such that no longer exist. The journal entries were priority and the rest wasn't able to be moved. So, enjoy our story. God is still moving and working in our lives.

Friday, October 31, 2003

Fri. 10/31/03 - Halloween

Friday, 10/31/03

“On Halloween we went to Gammie’s house and carved pumpkins. It was such a great time because we made a Buzz Lightyear Pumpkin. And also, we made a Bob the Builder Pumpkin. We tried some new bread at dinner – it was good. Grandpa Martin, Aunt Joanna, Uncle Billy and Jazmine were there too. That’s pretty much all of it.” - quote from Les.

Monday, October 27, 2003

Mon. 10/27/03 - Blue Angels

Monday, 10/27/03
Les had x-rays of his chest and sinuses last week and has finally been diagnosed with sinusitis. He’s on antibiotics now and I hope we will see some improvement soon.

His blood counts are outstanding. His ANC was just above 2000 last week. His weight is also slowly increasing. He was up to 16.5 kg (36 ¼ lb) last week. YEAH!!!

We have another clinic visit tomorrow (Tuesday). Les will also have another hearing test tomorrow. It will be interesting to see if his hearing has changed anymore since the last chemo treatment.

Next week Les is scheduled for his next inpatient chemo treatment with a whole new batch of chemo medicines. They are planning on doing an MRI at that time too. The MRI will tell us if the treatments are still working. The last MRI, back in July was very good in that one of the tumor nodules in his spine had disappeared since beginning treatment. We pray that this next MRI will show similar improvements.

Overall, Les has been doing great. We are really enjoying his company and he keeps us smiling.

We have had some fun activities in the last couple weeks. First, Les was invited to attend a dress rehearsal of the Blue Angels at Marine Corps Station Miramar in San Diego. Les took along his parents and some grandparents and we enjoyed the first class treatment of a private show and then a time to meet the pilots and get pictures and autographs. This was with the Make-A-Wish organization.

Les is now a Make-A-Wish kid. Please note that Make-A-Wish is for kids with “life threatening” illnesses, not necessarily terminal illnesses. Also, Les has until he is 18 to have a wish granted. I don’t know when he will do his wish, but I would like to wait until the treatment is over and he has regained more strength and stamina. Until then, Make-A-Wish sponsors many fun activities and has access to tickets to other fun events that Les is now eligible to participate in.

The other fun thing we did was going Valley Center to some pumpkin patches last weekend with daddy. We first went to Bell Gardens, which is a non-profit educational working farm. Mr. Bell of Taco Bell founded it. There are several different crops and demonstration gardens – including a pumpkin patch this time of year. They also have a ¼ scale model train with a 2-mile track that goes around the fields. We had a great time picking out our pumpkin and riding the train around. The other pumpkin patch we visited was at Bates Nut Farms. Our visit there was short, as it was near closing time. We did browse through the store and see the animals.

Our visit to Valley Center was on Saturday, October 25, 2003. At 2:30am Sunday morning, a fire broke out in Valley Center and it is my understanding that Bates Nut Farms has burned and I’m not sure about Bell Gardens. How eerie to have just been enjoying a wonderful day out there not even 24 hours before major destruction hits. It’s another example of how we never know what tomorrow will bring. Whether through a cancer diagnosis or a fire, we are reminded that we are NOT in control of our lives and we won’t always know the answers to life’s mysteries.

On a related note, Barry Robertson, Les’ grandfather is fighting the “Old Fire” up in San Bernardino right now. He has just come off the lines after 40 hours of continuous efforts. He will get some rest at the Mission Inn hotel and then back to the fire lines again.

Friday, October 10, 2003

Fri. 10/10/03 - Etoposide

Friday, 10/10/03
Les’ ANC was up about 1000 points higher than last week, so we stayed overnight at the hospital for his next chemo treatment last Monday (10/6/03). YEAH! It’s amazing how quickly they can go up, and down.

Les had his hearing test on Monday morning (10/6/03). They can detect a slight hearing loss mainly in the higher frequencies. His right ear seems to be a bit worse than his left ear. Because of the amount of hearing loss, they reduced the strength of the dose of Cisplatin by 50%. Hopefully by reducing the dose, they can minimize any further loss. This is the last time Les will need this particular chemo medicine. Note: the hearing loss is fairly minimal right now, and we don’t even notice it. He does seem to be a little extra sensitive to loud noises though. Please continue to keep Les in prayer. God is able to heal his ears – I believe it!

We also started giving Les his last round of Etoposide at home. After 21 days are over, we won’t have to administer anymore chemo at home. YEAH! It seems though, that the Etoposide never wants to go home with us. I mean the actual bottle.

The first time we were in the hospital for chemo, they told me to go to the pharmacy and pick it up, but with all the confusion over packing and loading up, I forgot. It wasn’t until we were home that afternoon that I realized my mistake. Frantically, I called my mom and between her and my grandma they were able to get it from the hospital and drive it up to us (70 miles) that night.

The second time we needed to bring it home from the hospital with us, the insurance company was balking at paying for it, and it was after 5pm on a Friday. We were able to come home with just enough to get us through the weekend, and then after it was straightened out with the pharmacy and insurance, a friend was able to pick it up and drive it to us.

Now on this last visit to the hospital, I was all geared up to make sure I didn’t forget anything – especially the medicine. We had to wait an extra 3 hours for the medication to be prepared before we could leave, so I had all our stuff packed up and loaded in the car. All I needed was the medicine and Les. Well, I left Les in the capable hands of the playroom staff while I went to the pharmacy to get the medicine. When I got back to the playroom to get Les, he decided that he didn’t want to go home, and he wanted to stay in the hospital “forever”. In the confusion that resulted from me having to physically pry Les’ hands off the door handle and drag him screaming down the hallway and into the car, I forgot that the medicine was still on the table in the playroom (the playroom was closing so we couldn’t stay and also traffic would be heavier if we didn’t leave soon). Thinking that finally everything was in the car, I started off. It was about 3:30 in the afternoon, just about the time the traffic starts to get heavy for the afternoon commute. I drove through the worst of it and then about 25 minutes from home, I decided to check my home phone messages from my cell phone. The last message was from the hospital saying that they had Les’ medicine at the nurse’s station and she hoped that I wasn’t already driving home. I didn’t know if I should laugh or cry as I exited the freeway and started my trek back to the hospital. When I finally had the medicine in my car, it was 5pm and traffic was a mess. I then did the only logical thing I could think of; I invited my mom to go out to dinner at Chevy’s, my favorite Mexican food restaurant. We enjoyed a nice leisurely dinner and then went home when traffic thinned out.

Needless to say, I am very happy that I will not have to bring that medicine home again. Please understand though, that Les will continue to receive chemo treatments. It’s just that he will get a different combination of chemo medicines starting in November and continuing until summer 2004.

Wednesday, October 1, 2003

Wed. 10/1/03 - ANC

Wednesday, 10/1/03
Les was able to avoid a hemoglobin transfusion this last round. Yeah!!! His ANC is still really low though – even lower than before. We think it’s because he’s still battling this cold/cough thing. His next round of chemo was originally scheduled for tomorrow (10/2) but we are delaying it until next week. His ANC needs to be above 500 and right now it is around 300. Check out the Blood Counts for Kids website link under Favorite Websites/ Les’ Favorites/page 2 for more information about what the different parts of the blood do and what normal counts are. The ANC is the Absolute Neutrophil Count (Neut and Benny on the website).

Well, Les is still a bit sick, but Jason and I are healthy again – for the most part. We have been able to adjust Les’ feedings back to a little more reasonable timing at night, which is giving us a bit more sleep. Les is still vomiting occasionally, but not usually first thing in the morning like he had been.

This last week was a bit topsy-turvy. First, our regular Dr. check on Thursday (9/25/03) had us discontinuing Les’ weekly antibiotic dose because sometimes they can lead to lower blood counts. Then, Les’ g-tube site had been looking a bit red, and it was rather sensitive. I took him to see the surgeon on Thursday, and he put him on yet another antibiotic for a week. It seems to have worked because the redness has gone away and Les isn’t quite as protective about it. On top of that, this past Monday (9/29/03) Les had a very slight rise in temperature, so I called the hospital. They assured me he was probably just fine but to keep an eye on him. Well, between coughing and vomiting every day, a touchy g-tube, a slight increase in temperature, and low ANC, I decided for peace of mind I wanted a doctor to see him again and get another blood test.

So, yesterday (9/30/03) we drove down and spent 4 hours in clinic (most of the time waiting). I was informed that Les’ g-tube and temperature were just fine. His cough is still only upper respiratory and hasn’t traveled to his lungs, so we are good in that department. But, his ANC was even lower than last week. I asked what we are supposed to do about this to protect him from infections and was informed that basic common sense prevails – keep him away from germ-infested areas such as playgrounds and wash our hands a lot. I asked about quarantining him as the ultimate protection, but was informed that he is at risk from his own germs as much as from anyone else’s, so we might as well go on with as normal of life as possible using basic precautions.

Where does this leave us? I guess we could buy stock in Purell (antibacterial hand gel) and hand it out to everyone we meet. Or we pick and choose our social contacts and pray pray pray that Les doesn’t catch anything (and still pass the hand gel around).

Please continue praying for Les. Especially that this cough disappears. I’ll try to update the site next week about his counts and when he actually gets chemo. Oh, and Les has a hearing test on Monday. I’ll post the results of that as well.