May 23, 2014

When I planned to compose this update I didn't think I'd have much to say. Aside from what we believe to have been a virus that he caught about a month ago (although the possibility of allergies has not been entirely ruled out), SD has been doing great. The virus progressed to the point that we feared another weekend trip to the emergency room, but his pediatrician said that his lungs sounded clear and recommended we just wait it out. He still has a bit of lingering congestion, but sounds much better than he did a few weeks ago.

This morning he woke up cheerful and had plenty of energy. He even talked to one of the nurses as she prepared to access him, which does not often happen! We expected clinic to be the usual 2 - 2 1/2 hour routine we've come to expect, after which we'd meet up with his Aunt Carmel and cousins from out of town for lunch and a trip to the Sleeping Bear Sand Dunes. The last thing I expected to hear was that SD needed blood - but he did.

His primary oncologist was at the TC clinic with us and said that needing a blood transfusion during Maintenance is very unusual. She didn't have an answer as to why his red counts sometimes dip like this, nor how he can appear so healthy when he is that low on blood. But just like last time, even though he was active and perky before the transfusion, he grew more so during and after it.

The transfusion prevented us from going to the Dunes, but SD had lots of visitors to keep him company today! He was allowed to have both his Daddy and me, his Grandma Cleary and Aunt Carmel, and all four visiting cousins in his room. He seemed to really enjoy this new clinic experience. :)

His other counts were high enough that his oncologist said we didn't need to have them checked before his next appointment unless we were worried about how he's doing.

Even though this appointment started in disappointment, we did receive some exciting news on a matter we have always been in some doubt about. SD's oncologist and one of the nurses studied SD's chart to find out when he is scheduled to finish up with treatment, and concluded that he should be done in February! This is the earliest that we dared hope for, as the answer to this question changed depending on who we asked. Now instead of saying that he has about a year or a little more left of treatment, we can report that he has *only 9 months* remaining! It's starting to feel like an end is in sight!

February 23, 2014

SD's counts looked so much better last Thursday! By now he is completely over his illness and back on his oral chemo, although at a slightly lowered dose. He'll get checked again this coming Thursday.

Thank you to all who have prayed for him and who send kind words of support! We love you!

He finally had a chance to get a good dose of fresh air yesterday at Knee-High Naturalists!

February 14, 2014

As many of you know, SD went to the ER last Saturday because of a fever. His only other symptom was a cough which, though infrequent, didn't sound very good. He remained cheerful and active, and his appetite wasn't affected, so the presence of a fever was surprising. At the ER he received an antibiotic and was then discharged with instructions to return for more antibiotics if his fever hung on through the next day. His fever has not returned, but his cough has been gradually getting worse since then.

At clinic today, nearly one week after his ER visit, the oncologist decided to call it bronchitis and prescribed a 6 day antibiotic. While on it he may not take antacids, but he will be taking steroids; he has always taken Prevacid or similar medication with steroids to prevent acid reflux, so we're a little nervous about how a full pulse without it will affect him. In the past month or two, he's had more issues with what seems to be acid reflux than he's had in the past.

He has been off his oral chemo since last Saturday and his counts were really low again today, so he won't start again until at least Thursday when he gets his counts rechecked. He did receive vincristine in clinic today and has started his steroid pulse, so his treatment isn't at a complete halt right now.

Our prayer requests for this update: that SD's counts will go up quickly (including his hemoglobin, which has been in the 7's since at least last Saturday), that he'll get over his cough soon, and that his body will tolerate the steroids without antacids.

Apart from this recent hitch, SD has been doing wonderfully since our last update. He has stayed healthy, has been getting more active, and has been acting more like one would expect a little kid to act. His sense of humor is returning, which is one of the greatest blessings we've recently experienced. :)

Since we don't have any pictures from clinic today, here are some since our last update which show some of the fun he's been able to enjoy over the past few months:

SD had fun playing in the leaves as well as playing photographer last fall.

SD finally decided he felt strong enough to try pedaling on his own. We're really proud of him over this one!

The evening before the two year anniversary of his diagnosis he found one of his old chemo caps. We're so thankful that he doesn't need these anymore and for the happy face beneath it!

Having fun in a room we'd never been in during a December clinic. There is just enough room for him to hide between the window and wall, and hide he did. It took quite a while for nurse Mary to find him. It was also a great perch for watching workers go down a manhole and come up much dirtier than they were before!

Working hard clearing Grandma Snell's deck with his new shovel.

The kids seemed to enjoy this area the most out of the whole water park at the Kalahari, where we stayed while Stephen attended CodeMash (a big conference for programmers).

October 7, 2013

Today was a Grand Rapids clinic day, and the appointment went well. SD has had a slight cold for close to a week, so we weren't sure if his counts were going to be lowered because of that, but they were about average for him.

Speaking of counts, SD's have been suppressed for quite a while now, which got us to thinking about the amount of oral chemo he has been getting. We like to keep close track of his medication intake, which made determining when he had last taken a full dose of his medication easy. Realizing that it had been five months since his last full dose, Stephen decided to study all the records we've kept since Maintenance began in August 2012. After creating a bar chart and pie charts, we realized that since beginning Maintenance, SD has missed the equivalent of 25% of his oral chemo; in just the past five months, he's missed the equivalent of 48%!

Obviously, in spite of the good results of the metabolites testing this raised concerns for us, so we decided to point this out to Dr. Kurt (SD's main oncologist). Stephen gave his presentation today, and both she and Nurse Practitioner Mary agreed that we need to be more aggressive about getting his dosage levels up, hopefully to at least 80%. Ideally, they'd like him at 100%, but some just can't handle that. They came up with a new game plan for boosting his dosage levels; please pray that the best all-around plan can be figured out as soon as possible! This is a balancing act with many considerations. We have really enjoyed seeing SD have more energy and be more cheerful the last few months, and it would be great if the doctors can find a plan with enough chemo to kill the cancer but not so much that his personality is disrupted.

When we asked if the past five months of missing nearly half his chemo was something to be concerned about, Dr. Kurt said that she didn't think so. She said there is plenty of time for him to catch up. Both she and NP Mary were very impressed with and appreciative of Stephen's work; Dr. Kurt even jokingly asked if he'd be willing to do that for all their other patients. :)

After SD's appointment, we got to spend a few extra hours with Grandpa Cleary, who has spent the past week with us. We went out for a quick lunch, followed by a trip to the zoo!

We parted ways after that; I think it's safe to say that Grandpa's presence is missed by all already!

September 1, 2013

When SD had his counts checked on August 22 we were a bit surprised that they were almost exactly the same (some slightly lower) as they were two weeks previously. He'd been on half doses for those two weeks, so we were a little anxious during the week leading up to his clinic visit last Friday (August 30).

During that week, SD remained healthy, and on clinic day his counts made up for any lack the week before - they haven't been this high in a long time! His dose of methotrexate was slightly increased for now, but he is to remain on a half dose of 6-MP at least until his next count check in two weeks.

The results of the metabolites testing came back good, meaning that even while on the lower doses, enough 6-MP is making it to SD's system to stay within the goal range for a good outcome. From what I understand, dosages are determined by height and weight and the ideal is for him to take the full dose as often as his system can handle it; since I can't even remember the last time he was able to take a full dose, we are praising God that less appears to be enough.

We are in the midst of a steroid pulse (through Wednesday morning); extra prayers for grace are always appreciated during this time. :)

Here are some pictures taken since our last update; we took a trip to Wisconsin and the U.P., belatedly celebrated a birthday, and took a trip to Mackinac Island - fun and busy times!

August 9, 2013

We are pleased to report that SD's counts came back much improved today! His ANC just broke 1000, which is still quite low, but it is 10x what it was on Friday! His WBC came in at 3000. We've received official clearance for our trip, so if all continues as it has been going, we'll be leaving in a couple days. He'll be going back on half doses of 6-MP tomorrow. As always, thank you all for your prayers and notes of encouragement!

Emma (and Grandma S!) came with us to the clinic today. SD seemed to enjoy having a playmate there for a change. :)

August 8, 2013

Someone turned FOUR since our last update!

This is a photo we've taken on every one of SD's birthdays so far; he shares his birthday with his Daddy! This might have been the last year this particular pose will be possible. :)

SD has been doing extremely well over the past month. At his 4 year wellness check-up last week his RBC count was 10.3, which his pediatrician thought was a bit low, but to us that sounded like a pretty good number! He's been doing so well in health and mood that we expected nothing but a great report at his clinic visit last Friday, which is why we were astonished to learn that his WBC and ANC were close to bottoming out. He was still on reduced doses of his oral chemo, although his 6-MP dose had been raised from 1/2 to 3/4 since his July clinic visit. It seems even that may be too much for him to handle. The oncologist ordered an extra lab drawn for a test called Thiopurine Metabolites, which they will use to see if/how SD's body is metabolizing the 6-MP and whether he can take a lower dose and still have a good outcome.

Because of the low counts SD is off his oral chemo until further notice (he did finish a steroid pulse yesterday morning, however). We'll have his counts rechecked tomorrow.

Prayer requests: that the doctors will be able to figure out the optimal dosages for SD's case, and that SD's counts will be high enough to enjoy the trip to Wisconsin Dells and the U.P. next week!