Thoughtfulness

Today's appointment was long (8 hours in clinic) but uneventful, other than Sawyer's nurse practitioner bringing in a chocolate chip cookie cake for him to celebrate getting his driver's license. It even had a toy car sitting on top that he plans to put on a "memory shelf" in his room. She had no idea he likes cookie cakes so much that it's been his traditional birthday cake for many years! We really appreciate the staff in the clinic, especially a few of them who definitely take extra special care of Sawyer (one of them is a graduate of the Alfred University nursing program!).

He starts a new pill med at home tonight (takes it for 2 weeks) and gets 3 days of at-home chemo as well. The next appointment is on June 4th.

Hope everyone enjoys the long weekend and spends a few moments remembering family and friends who are no longer with us, as well as appreciating the ones that still are! Life is precious and we need to let others know they are too while we can still do it in person.

Passed his driver test!

Finally, something positive...Sawyer passed his driver's test today on the first try! He went out for his first solo drive a couple hours after we got home to see how it felt to drive alone (drove into Alfred to get some milk). We're going to go out for dinner tonight to celebrate.

His shingles continue to heal and aren't bothering him much. Boy, are they ugly looking! Allergies are giving him some sinus pressure but OTC meds are helping with that.

We'll be up early tomorrow; need to leave about 7:30 am for his appointment in Rochester. We'll be sure to bring our iPads and some snacks since it will be a long day. The good news is that he isn't scheduled for another appointment until June 4th so he'll get a little break again (although he will get chemo injections at home on Friday, Saturday and Sunday and be taking an oral chemo pill every day for a couple of weeks - so maybe it's not really a break after all). I guess it's just another regular schedule in the "new normal" for families dealing with cancer. If nothing else, hopefully this blog helps educate us all about what it all entails.

Another Quick Visit

Sawyer had to return to the clinic this morning as a follow up for his shingles and the fever he had on Friday. The entire visit took a little over an hour with Dr. Mullen declaring that the shingles were in the 'resolution stage.' Dr. Mullen also noted that the fever was most likely a reaction to the shingles. At this point Sawyer is on schedule for his next treatment on Thursday which includes three types of chemo, one of which involves a lumbar puncture and another that requires he receive fluids for a couple hours before and after it's administered. We'll probably be in the clinic for about eight hours.

Home again, home again

Sawyer and I arrived at the pediatric ER at Strong about 8:30 this morning and happily walked out about 2:30 pm. We at first thought they were going to admit him so being able to come home was a treat! Nothing in particular showed up in his blood test to worry the doctors other than low electrolytes so they gave him a couple different antibiotics and some saline to boost his sodium level. His blood counts are good, another reason they didn't feel the need to keep him overnight. We picked up some Gatorade and splurged on ice cream cones on the way home. He has to see his primary doctor on Monday morning for a follow up appointment. The oxycodone continues to alleviate pain from the shingles (which are starting to crust over, a good thing) and Tylenol helps with the accompanying joint pain. He's been relaxing by listening to a book on tape for awhile then watching a series on World War II on Netflix (not something I could relax to!). Hopefully his fever stays away for the rest of the weekend! Mark will be volunteering tomorrow at a table sponsored by CURE in Rochester for the Lilac Festival. CURE is a fantastic organization that supports families with kids with cancer. Since I'm not on Vermont for the weekend, I'll be able to get some progress done on a few projects while enjoying the forecasted beautiful weather.

Rochester Bound - yet again

Whenever Sawyer starts taking his temperature on his own, we know that something might be up. He is pretty good about self-monitoring himself for fevers. About 11pm last night Sawyer started checking his temp and it varied between 100 and 101.5, but most of his readings were in the 100.3 - 100.5 range. Since 100.5 is the magic number for a trip to the ER, we called the on-call physician who reported  that unless Sawyer's temperature is consistently above 100.5, we should bring him in. this was not the case so we went to bed. This morning his temperature again seemed to vary wildly. Using the temporal thermometer, his temperature was about 99, but using an oral thermometer, it was over 102. Again we called the on-call who said to bring him in to the Strong ER. Laurie was planning on taking a hiking trip to Vermont with several friends but was understandably uncomfortable leaving with Sawyer on his way to the ER. Therefore, instead of heading for Vermont right now, she is at the Strong ER where Sawyer's temp is 100.5 and he will be receiving antibiotics.

Even Sawyer was ready to go this morning. Last night he seemed annoyed at the thought of another trip to Rochester, but this morning he not only agreed that a trip was in order, but within ten minutes he was packed and ready to go. He said he could feel that something wasn't quite right due to muscle soreness and stiffness in his shoulders and arms. While this could be due to the shingles, he was glad to hear we were heading for Strong.

Manageable

The new pain medicine we got last night knocked Sawyer out and thankfully let him sleep all night. He's taken a few more doses today and is at least much more comfortable, enough to work with the tutor this afternoon. The doctor in Rochester also told us to double the doses of antiviral medicine to help with the healing process. Apparently it takes longer to get over the shingles if your immune system is weak (guess that's not surprising). He's lost the hair again on the left side of his head from laying on it so much the last week to be comfortable. Mark will probably shave the rest of it down later.

Gratitude

Alfred proves yet again just how special it is, and how grateful we are to be living there. How many people can call their doctor or pharmacist at home, at any time, and have them agree with no hesitation to meet you at their office? I'm on my way to pick up a different pain medicine for Sawyer at 10:20 pm at our local pharmacy (which has been closed since 5 pm). We made a similar call to our doctor a couple months ago. You guys rock!

Uncomfortable

The shingles are now rearing their most unpleasant side and are causing Sawyer quite a bit of discomfort today. I just talked to the on-call doctor who said we can give a double dose of morphine pills to see if that will help. Keep your fingers crossed it does so he can get some relief and sleep. If it doesn't cut it, we can get another pain prescription to supplement. The doctor said she has admitted patients for shingles pain in the past to get IV meds, let's hope we don't need to go there. His rash starts at his belly button and wraps around the right side to his spine. As always, he's not complaining, but holding steady and calm through the pain. On a happier note, he felt well enough last night to do some practice driving in Wellsville (especially parallel parking) and go to a movie with a friend; his road test is on Wednesday and hopefully things will be cleared up enough for that and for his appointment next Thursday.

Shingles

Well, our hopes have been dashed that Sawyer will continue to feel well and go to school until his next appointment. Today he was diagnosed with the shingles. Luckily it hasn't been too painful but is still bothersome and means yet one more pill to take (3 times a day for 10 days). He's feeling like the universe is out to make sure this year drags on.

Feeling well

Wednesday's appointment was short, only about an hour and consisted of getting two drugs he's gotten many times. He started again on the oral steroid but thankfully hasn't had the bad side effects like last time because he's taking a protonic pill that helps coat his system and prevent it from being so irritated.

He's been feeling quite good; went to school yesterday for a half day and again today. Hopefully that will continue through next week as well. His next appointment isn't until May 24th. Keep your fingers crossed we won't have much to report between now and then (other than to say he's still feeling good, is plugging away on school work and has been getting together with friends!).

We got news that two of our friends who have been going through cancers of their own have pretty much reached the end of their treatments and the prognosis for both is good. We are so thankful and wish them both the best!

Wonderfully uneventful

Today was the last round of the replacement asparaginase chemo and all seemed to go very well. Sawyer received the three shots and was on his way home by 1pm. He ate a big lunch and is now resting comfortably at home. The successful completion of this first round of replacement chemo is a big step. He now has to tolerate three more rounds of the replacement asparaginase over the next four months. This is in addition to all of the other rounds of chemo and steroids. We hope that the rest of his treatment is equally uneventful and effective.

He had a chance to relax over the weekend by going to see the new Avengers movie and spending time on Sunday with lots of extended family members at the Lounsberry farm.

Made it through the week!

Finally through this long week! The appointment today went as well as it could; just a culmination of too many appointments and too much medicine. Luckily Sawyer was done with the daily oral meds yesterday that gave him bad heartburn and stomach cramps. It's still working its way out of his system but he feels better. Mostly fatigued from the meds and from the high doses of Benadryl he's received all week. The plan is to take it easy over the weekend and enjoy his time until Monday rolls around when he'll get the last dose of shots for this round. Wednesday will be at the clinic as well but it should all just be chemo meds through his port. Then he thankfully gets a two week break (although he'll go back on the oral med for a week in there - but we have another medicine that is supposed to help alleviate the side effects - it better work!). We are happy to cross each day off the calendar as we work our way closer to the end of this phase.

(Mostly) smooth day at the clinic

We arrived for the appointment at 10:30 but since there was a full house of patients nothing really happened until about 11:30. Sawyer has a reserved room for his appointments - the one right in front of the nurse station so he can be in sight. We got to go to the room right away and got settled in knowing it would be many hours before we left. The only bumps in the day were the waits for the nurses to be able to do the next needed step and the fact that Sawyer's nerves made his stomach pump out more unpleasant acid (he's been having trouble with heartburn) and he threw up, then spent the next half hour dealing with excess saliva and generally feeling yucky. Things settled down enough that he decided to try to eat something to help absorb stomach fluids and ended up eating lots of dry Cheerios. That helped! Over the course of the next five hours he received eight different medications. Two for his nausea, two to help alleviate an allergic reaction, one to help cut down on possible pain from the shots, and three different chemo drugs (including the shots). All in all, a typical day at the clinic. He kept distracted by watching some tv, chatting with the nurses and Mark's sister when she stopped by (she's been working at the hospital) and by snoozing once the Benadryl hit his system. We left about 3:30 and he'll spend the evening resting on the couch. Only two more doses of the new medication that has been bothering him with heartburn, bloating and flushed skin. It's a steroid medication that he started taking last week at home (twice a day). He goes off it for a week then back on for a week, then hopefully done with it.

A rough but productive day at the clinic

Sawyer woke up yesterday feeling better and was definitely more animated than the day before. But as we approached Strong Memorial in the morning for his appointment, his mood became noticeably more stoic and sullen. He said he associates the sights and smells of Strong with unpleasant experiences (no surprise there).

After completing the standard intake process (weight, blood pressure and temperature) we were moved to a treatment room right across from the nurses station. Sawyer's face and neck were very red and because of this Dr. Mullen asked for blood work before administering chemo. Sawyer's mood was not helped when both ports in his chest would not draw blood (that meant he was poked twice in the chest), then an attempt to draw blood from his right arm failed, and finally after a fourth attempt his left arm produced the needed blood.

One hour later, it was reported that all his blood levels were normal; he started his pre-chemo prep about 1pm and finally had the three chemo shots administered at1:40pm. In case you're keeping track at home, this leaves a grand total of seven needle sticks for the day. 

Once again, Sawyer seemed to tolerate this replacement chemo fairly well. At 2:30 he had a brief bloody nose which prompted the doctor to request additional blood work to make sure his platelets were okay. Platelets help with blood clotting so the spontaneous nose bleed led to concerns that he might need a transfusion. Blood was drawn from one of his ports (which eventually cleared) and at 3:30 it was reported that all of his levels were fine and that he could go home. This may have been the first and only time he smiled all day. The good news is that he's tolerating the replacement chemo quite well, the not-so-good news is that he gets to do pretty much the same thing again on Wednesday, Friday, next Monday and Wednesday. (Then all over again, six more times, two weeks after that).

He's on a daily chemo pill at home for a little while as well and that has been bothering his stomach and making him pretty tired. We're trying to make sure he keeps eating throughout the day to combat some of the nausea; right now his go-to dish is macaroni and cheese with some pulled pork mixed in. He's also eating yogurt everyday since that seems to help as well.