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!

July 11, 2013

SD has been doing quite well since his hospital stay back in May! He was put on half doses of his oral chemo five days after he came home, and has stayed on half doses since then until this week.

His first steroid pulse after being in the hospital was reminiscent of the old days when he'd get highly emotional, do lots of screaming, and was in general very, VERY touchy. Yet it wasn't all bad: he was able to attend his Uncle James' graduation celebration which included a number of extended family members. Before everyone arrived, Mandy thought she was going to have to hide with SD somewhere, but once people showed up, he surprisingly seemed to perk up even though the noise around him increased. A change of scene and society will do wonders, thank goodness. :)

At his June clinic, the dosage of one of his medications was very slightly increased, but the others stayed the same. The steroid pulse that followed was more normal for these days. We don't know what caused the previous one to be so different, but we're thankful that they don't always affect him that harshly.

This week at clinic started the top of a new cycle, which means we were in Grand Rapids for a spinal tap.

SD's counts looked great, so we were instructed to increase his 6-MP dose from 1/2 to 3/4. Since he's been on a half dose of this medication for two months, we've recently started seeing glimpses of the old SD we used to know again. It's always hard to know we'll lose that soon with the upcoming steroids and increase in dosages (his steroid dose has also increased - our boy is growing!), but it is so *good* while it lasts. Overall he continues to handle his treatment extremely well. As always, THANK YOU to all who continue to pray for SD!

Just before we left clinic we asked SD's nurse about Sunday School attendance, and she gave us the go-ahead! We'll have to take it week by week, but as long as everyone in class is healthy and he isn't on a steroid pulse, he is clear to go. We are thrilled to finally be at this point!

May 23, 2013

Today, SD was in much better spirits! Yesterday he was starting to perk up, and today he pretty much returned to his normal, happy self!

We got the word on SD's counts today late this morning; his ANC is now around 2000! The doctor here and the oncologists downstate have agreed that he does not need another Neupogen shot, so that means we can go home today!

SD still has quite a cough, so he is still in isolation. However, his immune system has sufficiently recovered enough for Emma to come in for a visit. Here they are both watching Chip & Dale on the laptop.

So, this won't be our longest hospital stay, but it does qualify as our most electronic! We currently have three laptops, one iPad, and a portable Wii in our room. SD has really enjoyed playing Mario Galaxy 2 with us the last couple of days.

SD will not resume his chemotherapy immediately, though he will be on an antibiotic for a week or so. The next few weeks will be a bit rough; he'll have to go in fairly often for blood work and some "catchup" on his medications.

But for now, we're just glad to be going home!

May 22, 2013

Not much changed regarding SD's condition yesterday. He was extremely sleepy all day long and his counts had stayed about the same.

There was a severe thunderstorm warning on Monday, so Grandma Cleary waited until yesterday to bring Emma down so we could spend some time with her. We hadn't seen her since last Thursday, so we certainly were missing our sweet little Sunny! To our surprise, she decided that she was Daddy's girl during our outing, but was obviously very happy to see both of us again. :) She didn't get to see SD but at least she got to hear his voice from the hallway.

We took Emma out for lunch and a short excursion to the mall, and spent a bit more time with her again after dinner. We can hardly wait until we can all be together again!

Today (Wednesday), SD's neutrophil count came up from 0 to 37. Not a dramatic difference by any means, but it is an increase. The neutrophils need to be over 500 before he can go home. He endured his fifth shot of Neupogen this afternoon, so we are hoping that it will start taking effect by tomorrow. It's never taken this long to start working in the past, so we are rather surprised to still be here at the hospital. It's beginning to look like this will end up being his longest hospital stay ever! He does appear to be on the mend today, though. He's perked up a bit and has been able to eat a little more. Not much more, but there is a noticeable difference.

May 20, 2013 (Part 2)

Dr. Lamphere just came in with surprising news. After two days of Neupogen shots, SD's white counts have actually gone down rather than up!

When SD has gotten Neupogen in the past, it would always cause his white blood cell count to skyrocket. Instead of skyrocketing, his white count went down to around 0.7 while his ANC (an estimate of his infection fighting capability) is virtually at zero.

This is the first time we've dealt with a "neutropenic fever" without a clear cause, but the doctor acts like it's not unusual (in cancer patients). Since we haven't been able to figure out what infection SD is fighting (blood cultures are still all negative, his recent chest X-rays are clear, etc), all we can do is wait for SD to kick it and help him as much as we can. So, he's staying on a broad-spectrum antibiotic and will continue receiving daily Neupogen shots.

In order to go home, we need to see:

1. No fever for 48 hours. Check.
2. Negative blood cultures. These take a few days to check, but SD's have all come back negative so far. Check.
3. Any known cause of the infection to be cleared up. Since we haven't been able to determine an actual cause for SD's illness, he passes this one too. Check.
4. Blood cell counts trending upward. SD's are currently trending downward.

So for now, please pray that SD's white blood cells will recover and start trending up, and that his fever does not return. If he gets a fever again, we'll need to "reset the timer" on the fever and blood culture checks, spending at least another two days in the hospital.

Dr. Lamphere said there is a (small) chance we could go home tomorrow, but he has seen other cases where it took a week. As of now, we can't guess when we're going home.

May 20, 2013

SD slept *a lot* yesterday. He took three naps during the day and still slept well through the night. Around midnight he was up for about 20 minutes when the nurse came to check his vitals and administer his meds; he popped up with a big smile and asked to use the iPad. Since he wasn't going to sleep while the nurse was there anyway Mandy told him he could while she was there. He was ready to put it away shortly after she left.

Dr. Lamphere came to our room last night to let us know that no sign of pneumonia showed up on the x-rays taken yesterday. We still don't know what this is, so SD has been in isolation and under neutropenic precautions during most of his stay. This means that anyone coming into the room (except Mom and Dad) must wear a fresh gown, mask, and gloves, there can be no fresh flowers in the room, hot foods must stay hot and cold foods must stay cold... there are many little efforts to keep anything new from infecting him further.

SD's appetite has been very poor during his hospital stay. Sometimes he decides that something sounds good, but he can only eat a little bit of it. Sometimes he takes a bite and then turns it away because his taste buds are affected. We'd really like to see him able to eat more soon!

Dr. Lamphere mentioned the possibility of going home today. He didn't sound extremely optimistic about it, but as of yesterday it wasn't out of the question to consider it. He said we'll just take it a day at a time. We haven't had his blood counts checked yet today, but this morning SD's cough is even worse than it was yesterday and has been wheezing quite a bit.

May 19, 2013

SD hasn't had a fever since yesterday morning!

Around noon yesterday SD suddenly wound down and wanted to get into bed, but said he did *not* want to take a nap. He was asleep within a few minutes, however, and slept for *five* hours! It seemed that once his fever broke he was able to sleep more peacefully than he has in days. His breathing was much closer to normal and his heart rate was much lower also.

Unfortunately his nap was rudely ended by the dreaded Neupogen shot. His white blood cell count had decreased to .5, so the doctor wanted him to start him on Neupogen to kick start an increase in the WBCs. To make up for the stinging wake-up call, his nurse brought him a fun tool set to take home.

SD's cough began to increase last night and has been much worse this morning. He's also developed a runny nose. Because it sounds like things are starting to break up in his lungs, the doctor ordered another chest x-ray. Pneumonia has not been completely ruled out yet, but the doctor said it could be something as simple as a common cold. With his imuno-suppressed state, symptoms can manifest in more severe ways than they normally would. Right now we're waiting for the results of today's lab work and x-rays. We do know that the cultures are still negative. He's had two breathing treatments so far today.

We were a little surprised today by the change in SD's disposition. While he had the fever he was being a goofy little fellow, but today he's been a lot more touchy. He's probably getting tired of being hooked up to all these wires and feeling the tape pulling at his skin. His chest is filled with various sticky tabs and tapes; three of the tabs are now unnecessary, but he will not let us near them. So they'll probably all come off at once, poor fellow. He's probably getting really bored too; we didn't take many things to the hospital because we didn't think we'd be here long.

There has been talk about the possibility of going home tomorrow. We haven't received the results of his lab work yet, so it mostly depends on how his white counts look (and if he can continue to stay fever-free). He quickly dropped off to sleep around noon again and has been sleeping soundly since. It's comforting to us to see him getting real rest.

May 18, 2013 (Morning)

Yesterday was the day SD was originally scheduled to go in to clinic and start his monthly steroid pulse. On clinic days, some of the oncologists from Grand Rapids come up to Traverse City for us northerners. One of the visiting doctors (Dr. Cornelius) stopped by yesterday to visit and check on SD. How kind of him to drop by before his long drive home! He gave some recommendations on steroids; they're suspecting SD's cortisone is low, so they're starting him on Solu-Cortef (this is a totally different kind of steroid than his regular chemotherapy steroid, dexamethasone).

Since we've been here, the doctors have had a difficult time keeping SD's fever down. He's currently on the steroid, some broad-spectrum antibiotics, and tons and tons of fluids! We also have a fan and ice packs on him (seriously). He has been taking Tylenol almost constantly since we've been admitted - not for pain, just to keep his fever in a reasonable range.

However, he is in excellent spirits. He's enjoyed spending time with both of us, and is cheerful to the point of silliness! Most of the staff here is only treated with a shaking of the head or a verbal "no", but SD decided he liked one of the nurses last night and started chatting a lot with her. SD has also voluntarily taken naps several times, which is quite unusual for us: he just announces he's going to take a nap, lies down, and almost immediately falls asleep!

When he was first admitted, they were suspecting pneumonia (based on the chest X-rays). However, they're not sure what is causing his fever now. The blood cultures have all come back negative (which is a good thing), so they just changed his antibiotic to one that affects more diseases. We're pretty much just waiting for whatever it is to run its course. Right now it looks like the soonest we could go home is Monday.

One worrying thing is that SD's white blood cell counts have been dropping. They were 2.4 when we were admitted on Thursday, 1.3 Friday morning, and 0.9 just a few hours ago. So they're probably going to do Neupogen today. This is not a fun one because it can't go in through his existing IV; it has to be injected into his leg muscle in multiple shots while he's held down. Neupogen is very painful for him. :(

May 17, 2013

SD was scheduled to have his monthly clinic check-up this morning, but is across the street in a hospital room instead.

He's had a cough for two weeks now. It was worst during the first week and has been fluctuating in frequency since then. On Wednesday he began complaining about a tummy ache and acted more clingy than usual, and this continued into Thursday. He woke up Thursday with a low-grade fever, and around 10 am crawled into our bed saying that he was going to take a nap. I thought he was playing around, but he actually did fall asleep; I think this was the first time he's ever done that. His temperature stayed steady until the late afternoon; upon calling DeVos about his 101.5 fever we were told to go to the hospital and by the time the phone call ended, his temperature had risen to 102.4. It was 103 when he was checked in at the ER.

After hours of waiting and blood draws and x-rays, the word was that he has pneumonia. He was given a hospital room, where I came later to spend the night. His fever lasted through the night. When the doctor spoke to us this morning, he said that he wants to see SD fever-free for a day or two and his white blood cell count going up before he is discharged. So it looks like we'll be here at the hospital a bit longer than originally hoped.

The doctor also said that he is not convinced that SD has pneumonia. He ordered more blood work for cultures; so far the cultures taken yesterday have not shown presence of bacteria, but it usually takes a couple days to be conclusive.

The nurse came in a little while ago to take SD's temperature and to give him Tylenol. His fever is the highest yet at 103.6; it shoots back up every time the Tylenol wears off. About an hour ago SD announced that he was going to take a nap and fell asleep almost right away. He's been sleeping since, waking up just enough to take some Tylenol a little bit ago.

April 18, 2013

SD began Maintenance cycle 4 today! Going into it we weren't certain whether he'd be able to have his procedures done because of the cough he's had for a couple weeks. It's been gradually getting worse over that time and he spent a lot of the night last night coughing. After listening to him this morning, the nurse ordered x-rays of his chest and sinuses to make sure sedation would be safe. Thankfully he was cleared for all procedures and everything went smoothly.

His counts have continued to improve since Monday, so he is going back on his oral chemo starting today. Some of his dosages have actually increased because he's reached a new weight bracket. He'll need counts rechecked in two weeks to make sure he's handling everything. He has gone through the whole accessing ordeal four times in just under two weeks, which is pretty hard on him; even when he just has a blood draw through his port and no chemo, it takes a lot out of him.

After clinic today we brought the kids and Grandma Cleary to the butterfly exhibit at the Frederick Meijer Garden. It was a short trip due to rain, but quite enjoyable for all!

April 15, 2013

SD is off chemo until further notice.

It all started about 2 weeks ago. It's sometimes hard to tell when SD is pale because he is such a fair-skinned boy to begin with, so we go by his nails and lips. When his lips turned pale after two days of pale finger and toe nails, we decided to have his blood counts checked.

His hemoglobin level had dropped to 8.6, so that would explain the paleness, but it wasn't low enough for a transfusion. All of his other counts were solid, which was quite encouraging; we thought that maybe he was starting to handle 6-MP at full dose at last!

DeVos wanted a recount one week later. By then SD's color had returned so we were completely surprised by the results. His hemoglobin was now 8.1 and all his other counts had plummeted into the severely neutropenic levels. Because of this, SD was taken off chemo for an undetermined length of time.

We had him checked yet again the following Monday (the 15th), and there was not much difference in his numbers, but every area had gone up. What a relief!

SD waiting for his counts on Monday.
After being accessed for the third time in ten days, he's rather weary of it.

March 16, 2013

SD has been doing really well since our last update. At his January 24 clinic he began Maintenance Cycle 3 (Maintenance is made up of 12-week cycles, with a spinal tap at the top of each cycle). His chemo dosages stayed the same because his hemoglobin count had decreased just slightly since his previous clinic, but everything else looked good.

SD was so hungry when he woke up from sedation that he was scarfing down his favorite treat with both hands!

At his February 15 clinic we were instructed to resume full dosages of everything! We actually have mixed feelings about this because he has never done well with the 6-MP at full strength, but we are excited that he's been healthy enough for long enough that the doctors want to try again.

SD likes to be the leader when we walk anywhere. Maybe because he's the first to reach buttons that way?

At his March 15 clinic, SD's counts came back quite a bit lower than their previous level. We expected this because of the change in chemo, but are hoping and praying that they have reached their lowest point. It'll be five weeks before his counts are checked again unless he gets very sick or shows signs of needing a blood transfusion, and obviously we would like neither of those things to be necessary! So far, even with his lowered counts he has remained energetic and playful, but he appears to be coming down with the cold his little sister has had this week, which seems to be affecting his mood and comfort a bit the last couple days.

Prayer requests:

1. That SD's body will handle the full doses of chemo from here on out or that we'll quickly find out the right dosage for him.
2. That if he does end up needing a transfusion, we'll recognize it. Last time he needed one we were shocked because he was happy and energetic and appeared as healthy as could be expected at the time.
3. That the steroids he's currently taking will not affect him too harshly. While he was on the lowered doses of methotrexate and mercaptopurine (6-MP) he handled the steroids surprisingly well. Last month was not quite so easy because he had gone back to the full dose of methotrexate, and now he is on the full dose of 6-MP, which is not something his body takes to.

January 22, 2013

We'd like to extend our apologies to our readers for the long delay between updates, but in this case no news is definitely good news! SD has been doing wonderfully on the lowered chemo dosages. Although he caught a cold the week preceeding Christmas, he recovered in under a week (we're used to his cough lingering for a couple weeks), and at his last clinic his ANC and WBCs were the best they've been in a long time (apart from when they shot up during his October PICU visit). In fact, they were so solid in spite of the recent illness that we've been instructed to increase one of his medications back to the full dose even though they usually wait to see three months of good counts. SD's counts have been good for two months now and it shows.

SD with his poke prize: a tiger!
These two were inseparable during the early January steroid pulse.

SD managed to escape going to clinic during the entire month of December. This allowed our family to enjoy a wonderful Christmas in Wisconsin with many family members and an unexpected extended trip into the U.P. to visit more family! With the five week break, however, comes a shortened time between his next appointments (and steroids). The three weeks have passed much too quickly. Please pray that SD's little body will continue to keep up with the medications, as this month will see him undergoing more chemo in a shorter time than he's had since Maintenance started in August.