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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.

Thu. 1/29/04 +Details

Thursday, 1/29/04
Here are the details I promised. I’ll start with the most recent information and then share some stories that happened last week.

My sore throat was gone by the time I woke up on Wednesday (1/28/04). Thanks for all the prayers – they must have worked. I’m still feeling fine, though still tired. Jason was wonderful and allowed me to go to bed and stay there all night long last night. He took care of Les’ feeding and medications as well as getting up with him throughout the night. I didn’t get up until after 7am. (Which is sleeping in for me).

Back to the hospital visit. One of the Physical Therapists visited us on Monday to check out Les’ muscle tone, especially in his legs. She explained to me that what the Vincristine chemo does is interrupt the nerve signals from the brain to the muscles. We can attempt to strengthen his muscles as much as we want, but unless his brain tells his muscles to work, most of our efforts will be in vain. (That’s my understanding anyway). What she was able to offer was this – we can keep his muscles stretched out and then when the treatments are over and his brain starts communicating again, then his muscles will be ready to get stronger. If we don’t keep them stretched, they will begin to atrophy; then when treatment is over we would have to work against the atrophy before we could make much progress in the strengthening.

So here’s the plan. We concentrate mostly on the legs right now. We will manually stretch his Achilles tendons by flexing his feet on a daily basis. We are also getting him some braces to wear in his shoes to keep his feet in the neutral (90o) position, but also allow him to flex his feet. This should help his gait considerably.

We went over to get measured for the braces on Wednesday before heading home. It was a fun experience and Les got to pick out a cartoon character that they will put into the plastic that the brace is made out of. We’ll surprise you with a photo when we get them. They should be ready next week and we can pick them up on Friday.

The other “news” recently learned is that Les will have to go back to the 10-dose G-CSF shot plan. The Home Care Pharmacy dropped off his box with the G-CSF and Aranesp before we came home. I didn’t bother opening it because it was in an insulated container and was all taped up (the medicine needs to be refrigerated). When I got home and opened it up I saw 10 syringes of G-CSF and my heart sank. I had checked with someone earlier during our stay to make sure we were still on the one-dose plan, and now I have 10 doses. Well, frantic calls and emails were placed, and today, I learned that the doctor switched Les back to the 10-dose plan because the one-dose was not the best for him, and it was difficult to calculate and administer the proper amount since he was so small, and there was too much waste (I guess it only comes in adult size doses and they throw away 2/3 of it before giving it to Les). Anyway, we are stuck with 10 shots again. Luckily we have found a method that works for now. We wait till Les is asleep and then poke him really fast. He cries just a bit but never really wakes up. The next morning he asks if we gave him the shot, so I guess he doesn’t remember any of it. Please pray that this method continues to work because he will need 50 G-CSF shots before treatment ends (not to mention the weekly Aranesp shots).

Tue. 1/27/04 - Good/Bad

Tuesday, 1/27/04
Good News, Good News, Bad News, Good News, Good News. See, more good than bad. :)

The first Good News was that Les was able to get his MRI very soon after he was admitted to the hospital yesterday (1/26/04). We were back in the room by 2:30pm (last time he didn’t start until 6:00pm).

The second Good News was that because his MRI was so early, they were able to start his chemo on Monday afternoon instead of waiting until Tuesday morning. I was anticipating one day for MRI and then three days for the chemo. By starting the chemo on Monday, we are able to shorten our hospital stay by a whole day (and night).

The Bad News was that I started getting a sore throat last night. I had a long night without much rest.

The third Good News was that my grandma (who lives close by) didn’t have anything scheduled today, so she came and relieved me at the hospital. I was able to go to her house and take a nap as well as take a shower. I’m feeling much better. I spoke to the pharmacist and he suggested a warm salt-water gargle and some Tylenol, so hopefully I’ll get some more rest tonight.

The final Good News is that the MRI results came back and everything is still clear. There was no change from the November scan (which was his first clear scan).

More detailed update when I get home.
Keep scrolling down - I added the details.

Sat. 1/17/04 - Aranesp

Saturday, 1/17/04
This last week Les only had one transfusion. It was for platelets. We are now on our “rest period” with no chemo until the end of the month. Hopefully his counts will recover well.

Les started his Aranesp shots last Monday (these are weekly shots to help his hemoglobin levels recover better). I talked to the homecare nurse and she said she is scheduled to come every Monday until Feb. 2nd to give him the shot. I think after that I’m on my own. It’s kind of a mixed blessing, on one hand she pokes him instead of me; on the other hand, I have to schedule a time for her to show up and that just adds one more appointment to our lives.

Les is starting to really be affected physically by the chemo. I guess the vincristine chemo is mainly responsible. Les has developed what they call a “slappy gait” where he doesn’t control his leg and feet movements smoothly. He is also losing strength in all his limbs and becoming very clumsy and needs help much of the time to climb up from the floor. Now the mommy in me sometimes wonders how much he is playing me so he can get me to carry him or help him up, and how much he really is unable to do some of these things. I usually err on babying him, but I have seen him do things on his own if he really wants to. I share this not to make you depressed, but just to share another area where you can pray for strength for Les and wisdom for me. In all of this we are still in good spirits and taking one day at a time.

Les’ next MRI is scheduled for the 26th of January right before his next round of chemo. Please pray that it is still clear (no tumors).

Have a great week. We plan on getting more and more strength around here since Les doesn’t receive chemo this next week.

Note: I wrote this before Les woke up on Saturday morning. I just wanted you to know that all day Saturday, Les was up and about going in circles and smiling all day. He's still weak, but his spirits were bright.

Sat. 1/10/04 - Low Counts

Saturday, 1/10/04
This past week went fairly well. The home care nurse was able to deliver the G-CSF shot quickly and Les was grateful that there was only one this round instead of 10 days in a row. He was able to select a toy from the “Brave Box” in the playroom as a reward for getting his shot. He chose a miniature Mr. Potato Head that can be a policeman or a fireman. (Les wanted me to share that part).

Les’ counts dropped fast and hard this round (meaning his energy level was low right off the bat instead of a delay of a few days). We went in for our clinic visit on Tuesday (1/6/04) and his hemoglobin was low enough to require a transfusion. The hemoglobin transfusions take 3-4 hours with an additional 1-2 hours just waiting for the blood to show up. Inevitably they conclude just about the time rush hour traffic starts, so we are grateful for grandma’s house. We zip over there and have a relaxing dinner then drive home after the traffic has calmed down. We did this scenario twice this week because Les now has to get his blood tested twice a week - Tuesdays and Fridays. Yesterday’s visit (1/9/04) required Les to get a platelet and hemoglobin transfusion. The platelet transfusion takes about an hour. We saw the doctor yesterday and she said that they would decrease the dose of cytoxin by ½ for the remaining rounds. Hopefully this will decrease his need for so many transfusions. Also, she prescribed Aranesp, another shot similar to the G-CSF, but this one is to help the hemoglobin recover faster. Hopefully between the shots and decreased chemo dose we can go to a clinic visit and come home mid afternoon instead of staying all day.

The doctor also looked at Les’ mouth. This week his gums became very swollen and they think it may be the beginning of mouth sores. The doctor prescribed a mouthwash, but I don’t know if we’ll be able to get Les to use it. He hasn’t really had much in his mouth for months, not to mention trying to get him to not swallow it and spit it out. Please pray that his mouth will just heal back up and not get worse.

On Tuesday’s clinic visit, a visitor came to the Infusion Center (one of the rooms we are in for his transfusions). His name was Shane Walton and he was a 2003 5th round draft pick for the St. Louis Rams. His hometown is San Diego and he was home for surgery then recovering for the rest of the season. He was really nice and sat down and played a Blue’s Clues computer game with Les. We’ve had visits from other people too like Padres players (and mascot), and college basketball players. You never know what’s going to happen during a visit to Children’s.

We did have some nice visits with friends and family this week. Les went to a friend’s house for a couple hours on Wednesday and I was able to meet Jason for a quick lunch and get a couple errands done. That was nice since I didn’t want to expose Les to many public places because of his low immunity level right now. Gammie visited Thursday morning and Aunt Joanna, Cousin Jazmine and Grandpa Martin visited Thursday afternoon, which helped to break up our day at home.

Overall, we are all doing fine – just a bit tired. Jason and I still trade off getting up with Les throughout the night to help him go potty. But other than that we are all in good spirits and counting down the remaining treatment rounds. Thanks for your continued prayers. We appreciate them greatly.

Fri. 1/2/04 - New Year

Friday, 1/2/04
Happy New Year! Les and I spent New Year’s Eve and part of New Year’s Day in the hospital. I found out that the cafeteria doesn’t serve much for breakfast on a holiday. Other than that, the stay was fairly uneventful with no surprises.

Let me catch you up on all that happened last month since my last update. Les had two more transfusions, one for hemoglobin and one for platelets. They went smoothly. His energy level was fairly low for the majority of the month, but he did perk up a bit more around Christmas. Praise God, Christmas came during a “rest-week” when he didn’t receive any chemo. His counts were high enough for me to not be too worried about infections and our schedule was slow enough that I think we all rather enjoyed the opportunity to kick back and relax.

Christmas was wonderful. With extended family and travel plans for others, we stretched our “Christmas” from the weekend prior to, well now – we’re still waiting to deliver and receive at least one more gift. I like to stretch it out this way. It helps to extend the season a bit more. Les received enough to make us need to rearrange the furniture in our front room to make room for the new toys. He really liked Christmas.

Today a home care nurse is coming by to deliver and administer Les’ G-CSF shot. G-CSF is a hormone that helps the bone marrow recover more quickly after chemo. That way, when his counts drop (especially white cells, the infection fighting ones) the duration of time that they are low will be decreased and then they come back up. We are trying something new this round. Instead of me giving Les one shot a day for 10 days in a row, the nurse is going to give him just one shot. This new shot is a formulation that is originally intended for adults, but they are reducing the dose by 1/3 and we hope that it is effective for Les. If his counts don’t recover as anticipated this round, we may need to go back to the other 10-shot regimen for the remaining rounds. Please pray that this “one-shot” will be effective.

That pretty much summarizes it in a nutshell. We’ve been told that the further along you go in the chemo process the longer it takes for the body to recover after each round, so our prayer request would be that Les would be able to recover enough for the treatment rounds to not be delayed. We are still looking at a completion of all the treatment this summer.
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