Remaining on High Alert

(I somehow managed to delete the original post when I was trying fix a spelling error -- oops). This was mostly a post about our worry that Sawyer might be reacting to the new medicine in the shots since his face and arms were quite flushed when he got up in the morning. But after a call to the hospital, we were reassured that it was more likely a reaction to the oral steroids he was on. But the uncertainty was worrisome until we got the answer.

Good again today

Sawyer and I returned to Rochester this morning for his second dose of the shots. He was once again prepped with a strong dose of Benadryl and some hydrocortisone before getting the shots. The Benadryl has the added benefit of helping to calm his nerves a little. He was hooked up to a heart monitor and blood pressure cuff as well, and a doctor was in the room through the first critical half hour. Thankfully all went well again.

They held him for about two hours of observation afterward. He'll get two more heavy doses of Benadryl for good measure later today and I have the Epi-pen in my purse with the dear hope of never needing it after he leaves the clinic. We just have to get through 13 more of these appointments! So if I turn gray (to match Mark) you'll know why!

The next appointment is on Monday for the next dose of shots, then Wednesday for a regular chemo treatment day and shots, and finishing up the week on Friday with more shots. Thankfully his birthday falls on Tuesday so he can at least be home for that. He turns 17! (Driver road test scheduled for May 23rd!)

Just to clarify

The "new" phase we learned about today was always part of the protocol - we just weren't aware of it. Everything is still on track as far as Sawyer's progress. The doctors are very pleased with how he's responding to the treatments and are confident all will continue as planned.

Home with a bit of frustration

Sawyer had a pretty calm night, sleeping as best he could with the constant interruptions of checks by the nurses. I slept at a nearby hotel while Mark stayed in the room this time. The oncology doctors came around 9 am to check in and during the conversation let us know that this really isn't the last phase before the "easy" maintenance. The next phase is "interim maintenance" - another two months that includes more spinal taps, heavy chemo and three more doses of these shots (another nine - bringing the total to 45). He's becoming a human pin cushion. That means that his summer will still be full of appointments and not feeling good. He won't enter the real maintenance stage until the beginning of school next year. We're not sure yet what it means for summer plans already in place (Lake George and Cape Cod, plus driver's ed, and a hope for him to be working part-time). He definitely won't be working and the doctors will try to work appointments around our trips, but there's no guarantee. And if they do, Sawyer may not be feeling up to a trip. We'll take it all as it comes.

While the news of this next step was discouraging to Mark and I, it hit Sawyer really hard. The straw that broke the proverbial camel's back. He had a tough morning dealing with all the stress of yesterday, the frustrations of not being able to run, jump, climb, and just in general be "normal" and the ongoing feeling crappy. We gave him lots of hugs and re-assured him that his reaction and feelings were very understandable and that our bodies and minds need a way to let it out.

 He was discharged around noon so we happily came home after a quick trip to Wegmans to stock up on food and drinks that seem to be the most palatable to his nauseous stomach. We picked out a few movies from the Redbox rental for diversions. He's feeling much better now. We go back tomorrow morning for three more shots, preceded by the Benadryl and the hydrocortisone buffers. We now have an epi-pen as a precaution for after the shots when we're out of the clinic. We don't expect to need to use it but it helps to know we have it. He will be observed each time for at least an hour after each dose since that's the normal time for a reaction to occur.

Next week we go back three times: Monday and Friday are just the shots while Wednesday includes the shots and a round of other chemo. So while we thought the end of June was the target, we are now looking at the end of August. Just another bump in the road that we'll manage and get through. We continue to be grateful for his overall health, prognosis and that he will be able to have a normal life. Too many others are not that lucky.

So far, all is good

Bottom line: Sawyer tolerated the new drug through the tense, critical first half hour when most strong reactions occur. What a relief! And then he went on to have no other problems.

 We arrived at the hospital about 9:15 am for his appointment in the clinic to get the spinal tap and administration of two other chemo drugs. That went smoothly. We also got a day-by-day schedule for the next two months. They call this last phase "delayed intensification." What's not on the schedule are the days for the rest of the shots he needs; they couldn't develop that part until they knew how the initial shot went.

 We had to wait quite awhile for a room to be ready in the pediatric ICU so we just hung out in the room in the clinic chatting, reading, checking email, etc. When he was transferred to the ICU we found out he's in the exact same room as last time, although this time when we walked in there was no bed! We were in the room for probably over an hour before one arrived. This room has a beautiful view unlike the ones in the regular unit so that's a small bonus.

 Even after the bed arrived it was a couple more hours of waiting until things got started. He got more nausea medicine since his stomach felt bad right after the initial chemo this morning. Then they prepped him with Benadryl and a steroid to help lessen a possible allergic reaction (he'll get that each time). And they got all the necessary supplies and additional meds in place in case he did react. Two nurses from the cancer unit had to come to give the shots since only nurses who have been specially trained to administer chemotherapy can actually do it. Poor Sawyer started shaking like a leaf right before the shots since he was so nervous (yes, I said shots - apparently "one dose" is actually three shots). He can pick where he gets them and decided his arms - two on the left and one on the right. Which means that overall he will be getting 36 shots instead of "just" 12.

He received the shots at 6:30 pm so it's been a long day. We (and his nurse) needed to keep him awake for the first half hour to monitor him then we could let him snooze. He's really groggy from the Benadryl. At this point we hope he can be discharged tomorrow and assume we'll come back on Friday for the next dose. It may be given in the ICU or in the clinic. We have to wait until his doctors come around and tell us what they've decided. We are very happy to have finally gotten through this appointment. It was moved so many times which just helped aid in the build-up of stress and worry. We will still be nervous through the rest of the shots since he could react to those. So keep up with your positive energy, thoughts and prayers to get us through this last big hurdle toward the end of June.

The wait is over

Blood tests done (again) this morning. And finally.... he's ready for his next treatment cycle to begin! We have an appointment at the clinic at Strong for tomorrow morning at 9:30 am. It was originally scheduled for Monday and I'm glad it got moved due to Mother Nature's temperament that day in Western New York (who would think we'd get our biggest snow storm of the winter on April 23rd?!)

Sawyer will get another spinal tap and then some chemo infusions in the clinic, then be admitted to the pediatric ICU to receive the first shot of the erwinia asparaginase. We're all a bit nervous about it, understandably, but the waiting and worrying is getting worse than what I anticipate the actual event itself will be. Another reason to get things started again!

The break has definitely been fantastic (5+ weeks) for Sawyer to have time to focus on visiting with friends, catching up on school work, feeling good, etc. He's been happily eating ice cream, desserts and all sorts of food in order to stock his body up for the next two months when he won't be eating much at all. And even though he's been feeling well overall he hasn't been able to go to school since his immune system was too depressed. He even got to enjoy Hot Dog Day in Alfred with his buddies even though the weather was less ideal.

He got caught up on all his school work over the spring break except for French. We've found a terrific tutor to help him with that subject; she comes tonight for the first time. She'll get him caught up and then continue through the rest of the school year to prepare him for his final and to stay caught up with work. His regular tutor (who is awesome) will continue to come as usual but being a science teacher doesn't exactly help him tutor someone in high school French!

This last intense phase of treatment lasts 8 weeks which will unfortunately take him through the rest of the school year and his three Regents tests. The original schedule would have had him done a few weeks before the end. Another disappointment from having the schedule shift was that he was nominated by his school to attend a national youth leadership seminar for a weekend but he's had to now decline since he wouldn't be able to be in a crowd nor would he feel good for such a busy weekend. But in the end, it's all small stuff compared to getting him on his way to being cured!

Still waiting....

So by now we've had about six appointments cancelled and rescheduled as we wait for Sawyer's blood level to get to where it needs to be. There's no cause for concern - out of the eight or so things they check everything is strong except the ANC (immunity fighting neutrophils). The ANC is working its way upward but the doctor wants it to be a bit higher before the next treatment. We were reassured that this is very common and that he's still in remission. He flew through his methotrexate treatments which apparently is not always the case; some patients don't make it through all four treatments. But since that process was pretty rough on his body, it just needs a bit more time to rebuild.In the meantime, he continues to enjoy a healthy appetite and is eating large portions of the delicious meals finding their way to our house each week from our caring friends.

Currently the next appointment is scheduled for Wednesday morning.

Still not there yet

Sawyer had a blood draw today and the results show that the one number that needs to be at a certain level is still low, so no trip to Rochester tomorrow. We assume they will re-test on Thursday and if the number is where it needs to be we would go on Friday. But hopefully we will talk to the clinic tomorrow morning and get some solid information.

Sawyer and I had a wonderful weekend visiting our good friends - a much needed mini-vacation for both of us!

Treatment re-scheduled

We finally have some information about the next treatment time! It only took about four calls back and forth with the hospital (which is unusual - but his next step is unusual for the doctors so they were trying to decide how they wanted to proceed).
The phases of treatment are broken down into individual days to track on which day a particular procedure or drug is to be administered. In this phase, he is supposed to get a spinal tap and about three chemo drugs in the clinic on Day One (which was originally yesterday but will now be next Monday). On Day Four, the schedule calls for the drug asparaginase which is the one he had the bad reaction to. It will be replaced by a variant drug administered as a series of shots instead of an infusion into his port.
The doctors decided to combine Day One and Four, so when we go to the clinic on Monday (assuming his blood levels are where they need to be - blood test on Thursday will let us know where it's at) they will do the spinal tap and chemo infusions in the clinic then they will admit him to the pediatric ICU. He will receive the alternate drug and be held overnight for observation. I envision a whole team of people being on hand for the first administration of the drug to be ready for action in case he reacts badly to it as well. A bit nerve wracking, really. But we have faith that all will go smoothly. And if it does, they may administer a second shot of it. He needs to have three shots total next week and three again the following week. Assuming all goes well, the additional shots will be given in the clinic, not the ICU.
This phase is a repeat often December and January treatments and is the last one before Maintenance Phase (woo-hoo!). It means weekly visits to the clinic in Rochester but this time there will be four weeks out of the eight that we go multiple times for the shots to be given.

On a fun note, Sawyer and I are going to celebrate his feeling good by taking a short out-of-town trip over the weekend to visit some close friends we haven't seen in awhile. Mark has work commitments that prevent him from going with us so he'll hold down the fort while we're gone.

Rochester trip delayed

We had a nice Easter visit and dinner with Mark's family today and Sawyer had his blood drawn in the early evening after we returned home. He still feels really good but one of his blood count numbers is too low for him to have the scheduled treatment tomorrow in Rochester. His body just needs a few more days to rebuild from the heavy chemo it got over the last two months. This is not unusual; everything is still good overall. It just means the schedule will get pushed back a week most likely. We will hear from the clinic some time tomorrow to find out when they want to test his blood again and when they want to reschedule the appointment. My guess is that they will wait until next Monday.
In the meantime, he will continue to enjoy his healthy appetite and his hair growing back in! He already thinks his hair has a different texture than before which seems to be very common with folks who have gone through chemotherapy. Time will tell.

A week of sunshine!

We all enjoyed the sunshine this week (although it could have been just a little bit warmer)! Sawyer went to school Half-days and is now hanging out at home with a couple buddies who are going to stay overnight. The tutor will come for awhile tomorrow morning, then the afternoon will be spent at another good friend's 16th birthday party.

The downer is that his Thursday blood tests result show his immune system is pretty low, so he will need to be extra careful about who he's around and germs in general. The visiting nurse will come back on Sunday evening to test again. His counts need to be at a certain level for him to have the scheduled treatment on Monday; currently the counts aren't where they need to be for it so we can't be certain yet about going to Rochester on Monday. It's not a bad thing, or necessarily unexpected, if he needs another week they'll just wait and reschedule. It just means the whole schedule for this phase shifts a week.

There's no school next week which gives him a bit more time to catch up on some work that's due for the end of the quarter which finished today.

We hope everyone has a fantastic weekend and enjoys jelly beans, colored eggs, hidden baskets and all the other goodies coming on Sunday for Easter.

Another good week

Sawyer had a good week - eating well, feeling good and went to school half days all week where he got to catch up with friends and teachers. He plans on going to school again this week.

Today I hosted a family get-together at my grandparents' farmhouse and over 47 people showed up! It was really nice that Sawyer could be there and not have to worry so much about being in a crowd. And he got to meet some extended family he hadn't met before. He spent much of the day hanging out with a couple of his cousins and relaxing. All in all, a good day, a good week.