Methotrexate Part III: So Far, So Good

I probably shouldn't say this, but so far, everything has gone the way it is supposed to. The lumbar puncture (chemo in the spinal chord) went well, Sawyer doesn't seem to have any residual side effects, and we are now settled in his room where he is devouring his second BLT sub (minus the 'T'). His pre-chemo sodium chloride drip has about four more hours which means he will begin the 24-hour methotrexate infusion between 10:00 and 11:00pm. We are currently in the same double room as the last visit and at this point we don't have a roommate. While it would be nice to have the room to ourselves, we know better than to expect this to remain the case. Updates will continue throughout this week; here's hoping for an uneventful week.

Date shifted

Sawyer's time back in the hospital has been shifted from today to Wednesday. The clinic called us late last week and said they were moving his appointment. No real reason given but probably due to the fact that his last chemo administration was shifted almost two days last time so the schedule is off slightly. Mark will take him on Wednesday and then I'll go up on Saturday morning for the weekend. We're hoping he'll be out by Sunday evening.

He will start in the clinic on Wednesday where he'll get another lumbar puncture with the injection of chemo, then the six hours of fluids to prep his kidneys before they start the 24-hour infusion of methotrexate. At some point along the way, he will move from the clinic and set up shop in one of the rooms on Unit 4.1400.

Sawyer has been feeling well and having a couple more days at home is just a bonus! His appetite is better (still not great but at least he's eating "real" food at times - last night he actually had a couple slices of pizza!).

Quiet days

Thankfully all has been going smoothly and quietly since we got home from the hospital on Saturday. We're looking forward to the rest of the week following along in the same mild manner!

He does take an oral chemo pill every night during these eight weeks of in and out of the hospital. It's one that has to be taken two hours after and one hour before he eats, so each night we have to time the three hour block to not be too close to bedtime so he doesn't need to stay up too late to wait to take it. (yes, that was one long sentence!)

Breakin' Out

As much as we enjoy the folks at the hospital, 10 nights is certainly enough time to spend with them! Sawyer's blood concentration level of the chemo drug has dropped below the required threshold, meaning he can be discharged today.

Our third roommate moved in last night shortly after we had a visit from some good friends. We were delighted to see that he and his dad are folks that had been in touch with us before. The 17-year-old boy has kidney cancer and is also a boy scout in our area. His dad had heard about Sawyer through the boy scout network and had called us a few times to touch base and talk about having a son with cancer. They are a really wonderful family and very easy to engage in conversation. Normally the boy would not have needed hospitalization for his treatment like Sawyer but just had his kidney removed along with the large tumor attached to it. His treatment includes radiation as well as chemotherapy.

(I realize I skipped mention of our second roommate - also a 16-year-old boy who was in to have his appendix removed. He was here a couple of days and again we were lucky that he and his family were very compatible room companions.)

Zero, the stair master

Yes, he's getting big and has now mastered the art of climbing up and down our spiral stairs!

Wonderfully quiet and uneventful

Yesterday was a quiet day with nothing happening other than Sawyer receiving his fluids and catching up on some much needed sleep (we had a few days where we didn't go to bed until 2 am, normally things quiet down between 11 pm and midnight).

Today should be much of the same. His blood count measuring the chemo drug level is 0.31. That's very good and will continue to drop. Once it gets to 0.1 he'll be able to go home. It's possible it could get there tonight but most likely we'll be heading out tomorrow at some point.

Mark unfortunately picked up a bad chest cold early in the week and was not able to come to the hospital at all this time. He'll be happy to have us home!

Visit from Dar, the pet therapy dog

Sleepy but overall feeling well

The chemo drug was hooked up around 2 am this morning (a little later than we thought) and Sawyer ended up staying awake until then. Added with the frequent checks of temp and blood pressure and the IV monitor setting off false alarms, he's pretty tired today. But overall feeling well. He had a good breakfast - yes, he had his pancakes! And is now off again working on math and biology with the tutor.

I was surprised to see in this morning's edition of the USA Today newspaper an article about the drug he's currently receiving, methotrexate. It said that up until last week there had been quite a concern about an expected national shortage of the drug since one of the four US manufacturers had stopped production. But the other three have now picked up the slack. I'm very glad to read that after the fact and not to have seen it before! It's a pretty crucial drug in his protocol and could negatively affect his overall outcome if he isn't able to receive it when he's supposed to.

Yay for Food!

Finally, the colonoscopy is done and Sawyer can once again eat! We quickly put in an order for some macaroni and cheese from the hospital cafeteria.

Things looked good from the scope (we even got pictures -- some things I think might be better left to the imagination!). His lower intestine is slightly irritated which caused the bleeding, but it should heal fairly soon. They will give him some medicine to help coat the area as it heals. Because of the clean report, they will start the chemo process shortly (6 hours of fluid, then the beginning of the 24-hour infusion) which was good news.

Sawyer is back in the room, resting comfortably. He was very cold when he came up from the ground floor surgery and is well-ensconced in layers of blankets, coats and heat pads. He's watching shows on the History Channel waiting for his meal to arrive.

He will from now on be on a daily dose of Miralax and Metamucil to avoid any re-occurance of this week's events.

Morning update

Yesterday afternoon progressed better than the morning. Sawyer picked himself back up and took mental control again of the issues. He slept fairly well and willingly got up to go with the tutor this morning to work with her for awhile as we wait for him to be called for his procedure. They call it being "white sheeted" when you don't have a specific appointment and just have to wonder when it will happen. Keep your fingers crossed it happens sooner rather than later. He hasn't eaten in 24 hours and at this point isn't allowed any drink or food until after the colonoscopy.

Happy Valentine's Day to everyone! There's volunteer students from the University of Rochester that work with the pediatric patients to do crafts and engage them in activities. This morning they went around and posted valentines on all the room doors as a way to add some color and liveliness.

Sawyer's roommate this week is a 5-year-old boy who is terrific. A really good kid, cute and very smart. He actually asks to play math games! His parents are very nice and are willing to try to keep their son fairly quiet if Sawyer is trying to sleep.

No buttermilk pancakes again today

Sawyer had wanted pancakes for breakfast yesterday but didn't wake up in time to order them from the hospital cafeteria during their breakfast period so he made sure to ask me to order some for him this morning if he wasn't awake. But the doctor came in early and said that Sawyer was going to have a colonoscopy after all, meaning he couldn't eat or drink anything. Time passes, cafeteria breakfast is over, and we get the news that the procedure will actually be tomorrow, meaning he could have had those pancakes after all but now it's too late (had to make do with a couple bowls of cereal).

We had been told that if there was no blood in his stool that he wouldn't need a colonoscopy and that his chemo treatment could start today as planned. But this morning the oncologists decided that they wanted to make sure there aren't any lesions or other issues in his intestinal system that might be exacerbated or irritated by the chemo drug (this is the one that causes mouth sores and potential internal sores in the whole GI tract from the esophagus to the stomach to the intestines). His blood counts are high enough that the procedure shouldn't pose a hazard to him. While it's very frustrating to have the extra days added, it's important that we know his system is as healthy as it can be before the next heavy drug assault.

Needless to say, Sawyer's fairly discouraged at this point -- he hasn't felt decent in a week, has been in the hospital since Wednesday, and has to take mega doses of Miralax (again) to clean out his system, all before being able to start the chemo which has its own issues (mostly the need to go to the bathroom every hour around the clock for five days). We expect he'll be in the hospital until at least Sunday now.

We won't be given a time for the colonoscopy, rather they're going to fit him in whenever there's an opening tomorrow so it will be a waiting game. He can't eat anything until then, can drink clear liquids the rest of the day and then nothing at all after midnight until it's over. He will be knocked out with general anesthesia so he won't be uncomfortable or aware of anything. The whole thing should take about 2 hours (knocking him out, procedure, waking up).

Mark and I were both with him Wednesday through Saturday. I went home on Saturday and returned on Sunday so Mark could go home until Wednesday. He'll return Wednesday after work so I can go home, then I'll come back up Saturday morning and stay until Sawyer is discharged. Sounds complicated but it all works out! I need to give a shout out to some friends that have done some favors for us the last few days that helped a lot, thanks!

In the meantime, I'm working to help keep Sawyer's spirits up and his mind distracted. He just went off with the hospital tutor so that should help for a little while. Visitors are welcome if anyone is able to stop by.

Continued improvement

We received some good news this morning. The stool sample from yesterday had no traces of blood. In addition, Sawyer reported that the feeling of impaction has decreased significantly. One doctor asked Sawyer if he still wanted a colonoscopy, Sawyer reported that he was not sure if it was neccesary but would like to know what the heck is going on. We are currently awaiting input from his attending physician.

one more quick update

In a follow up visit with Sawyer's oncologist we learned that he will not begin the next round of chemo until they know exactly what is causing the bleeding. If it is a hemmerroid or fissure, it should not cause any delays with his treatment. That is what we are hoping and praying for since we don't need any additional glitches with his chemo schedule.

In a holding pattern

Sawyer was able to get a decent amount of sleep last night. In fact, he is still sleeping as of 11:30am. It would seem that he is making up for negligible amounts of sleep the previous five nights. The plan for now is to continue to monitor his progress and if needed, he will be scoped Monday. At this point it is safe to assume that he will be staying in the hospital until his next chemo treatment starts on Monday. We are not sure how the scheduling will work if he starts chemo and needs a scope on Monday, but are sure it will work out. When asked if he would like to go home, Sawyer indicated a preference for staying put and a fear that if he does go home before this problem is resolved, that the same issues will resufarce.

A few answers provided

Two GI doctors reviewed Sawyer's charts and x-rays and are fairly certain that the bleeding is due to a fissure and should heal on its own over the next few days. They also believe that the amount of bowel in his system should not present too much of a problem. The initial plan is for Sawyer to remain hospitalized to make sure that he is heading in the right direction. This could take one or two additional days. The more important development is that Sawyer is no longer in a constant state of discomfort. This alone seems to give Sawyer some hope that the worst is behind him. Once again we want to thank our family and friends for their concern and prayers in yet another chapter in this ongoing saga; one we hope is coming to a swift and positive conclusion.

More unknowns

Due to the fact that the medications were not bringing any sense of relief, the attending physician decided to conduct an exploratory search to hopefully resolve the problem. Unfortunately the exam didn't find any a blockage or provide any relief. The next step is to bring in a lower GI specialist to determine what is causing the sense of constipation and bleeding. Still looking for answers and hoping to resolve them before the next dose of chemo (which starts on Monday).

wish I had some good news

Sawyer did not make much progress today despite several medications and a few procedures that were considerably more invasive. On the upside, he is able to rest comfortably and get some sleep. A night of decent sleep along with the meds doing their job will hopefully lead to better results.

At the ER

Sawyer's level of discomfort did not ease by late afternoon yesterday so Laurie call our general practitioner who examined Sawyer and made arrangements for Sawyer to go to the Strong ER for tests and x-rays. The blood showed that most of his levels were in the normal range and the x-rays indicated that there was not a blockage - this was good news. Much to Sawyer's chagrin, he was told that he would have to wait for his body to do its work. This resulted in another sleepless night without much progress. This morning he did go for a long walk through the sprawling halls and is now finally getting some sleep. We are waiting for the doctors to make their rounds in order to find out what happens next.

Not much better

The good news is that the nose bleeds and vomiting have ceased. The not so good news is that the constipation has not improved and now we are find blood when he does try to go to the bathroom. His attending Nurse Practitioner is requesting regular updates and if his condition doesn't improve by morning, then other measures will be taken. We are not sure what these will include but would imagine that a hospitalization would be in order.

The next wrinkle

Sawyer has been having a rough go of it lately. We are not sure if it is the new round of chemo or the antibiotics he received over the weekend or a combination of the two, but he has been struggling with constipation, nose bleeds and inability to keep anything down. Last night and this morning we were in contact with the clinic at Strong and received a script for the constipation. This remains a concern because Sawyer cannot risk any broken skin allowing an infection to set in. We are hoping that once the constipation issue has been resolved, that the other problems will fall into line allowing him to take in food and more importantly liquids. All this definitely keeps us on our toes.

Back to the ER: Part II

Sawyer returned to the Noyes Memorial ER last night for another round of antibiotics. The ER was full to overflowing, so it was decided to administer the IV in the waiting room. This actually worked our really well since we were back on the road by 10:15pm as opposed to much later had we waited for a room. The next step is to call Strong with an update on Sawyer's condition including the sore on his foot. His temperature yesterday and last night was in the 98-99 range (normal for Sawyer) and his toe is looking much better. Hopefully there will be no more complications and we won't have to make another trip to Rochester until a week from tomorrow.

Back to the ER

Late yesterday (Friday) afternoon Sawyer felt slightly chilled then took a shower that was followed by a two hour nap. Upon waking up we started taking his temperature which hovered in the 100.5 range. We called the Strong 'hot-line' and were told that we needed to take Sawyer to the ER. However, if we didn't want to drive all the way to Rochester, we could take Sawyer to Noyes Memorial in Dansville. This was welcomed news since it would save 45 minutes of travel time. By 9pm Laurie and Sawyer were on the road. At the hospital, it was noticed that Sawyer had a sore on one of his toes that looked infected. It is most likely that this was the culprit. Sawyer received a 30 minute antibiotic drip and was back in his own bed by 2am. He has to return to Noyes this evening for a one hour antibiotic IV.

Going home early!

Sawyer has been able to clear the Methotrexate from his system remarkably fast. As of this morning his blood level was 0.17; his level needs to be 0.10 to be discharged. The doctors are confident that Sawyer will hit that number by late this afternoon. Therefore, Sawyer is going to receive one more dose of Leucovorin (A.K.A. 'the rescue drug' which binds to the methotrexate and helps get it out faster) and then we should be out of here by 3 or 4pm. Not surprising, Sawyer is psyched to be on his way home and be released from the IV leash.

(Later update: Sawyer did achieve the 0.1 level and has been discharged. Now home to catch up on some sleep! One week down, three more to go....) He will be taking an oral chemo drug every night for the next two months but won't need to go for any clinic visits between the hospital stays.

Wednesday's Report: Grinding out the days

It's Wednesday and Sawyer continues to do well. According to the attending physician, Sawyer's blood levels are returning to normal at an appropriate rate. Following the 24-hour dose of chemo, his Methotrexate blood count was 69 and it needs to be 0.1% before he can be discharged. As of Sawyer's 3pm blood draw, the count was down to 9! This means that Sawyer may be able to go home tomorrow (Thursday), but most likely he won't be leaving until Friday. At one point this evening Sawyer stated that he is simply, 'grinding out the days' until he can go home. Hopefully this week -  along with the following six or seven weeks - will go quickly with no unpleasant surprises. More updates tomorrow.