November 28, 2012

One year ago today we received the mind-numbing news that our son has leukemia. We are so proud of him for how he has handled his treatment thus far and profoundly thankful to God for the same.

Our rosy-cheeked munchkin, enjoying the snow he's been anticipating since July.

One year down, two years and seven months to go.

November 1, 2012

It's been a busy month! After SD's 6-day stay in ICU, we returned home on Tuesday the 16th for a few days until his follow-up checkup in Grand Rapids on Monday the 22nd. Then Grandma Cleary watched the kiddos while Stephen and Mandy went to the Stratford Festival in Canada. As soon as we got back, both the kids and Stephen got sick (mild fevers, coughs, sore throats, and runny noses!) and we spent the next week closeted at home.

SD has been getting a little better the last couple of days, but we still weren't sure if he would get his regularly-scheduled spinal tap this morning. He still had a regular cough, his lungs weren't clear, and his bottom was still quite sore from his ulcer.

While we waited to hear about his counts and whether his lungs were healthy enough for sedation, the cap on SD's line fell off. This resulted in his needing to be re-accessed. They took a culture and put him on an antibiotic to protect him in case anything got in the line. Not a fun start to the day, but SD took it well, considering that he'd had a hollow needle stuck in him about twenty minutes before and was just settling in when he had to get all the tape ripped off his chest and start over again.

The doctor decided to leave the decision whether to sedate SD up to the sedation techs. Since a spinal tap is such a quick procedure they went ahead with it. We were pleased that this wasn't a wasted trip!

October 15, 2012 (Evening)

SD's counts have gone through the roof today! This is so very encouraging! His body should be much better able to start healing itself now.

His pain level has remained far more manageable today. He's been getting more independent again, wanting help with very few things and moving around quite a bit more. He is still quite touchy, but has also showered us with plenty of BIG smiles.

SD did very well during his CAT scan! Mandy was able to sit on the table with him the whole time and he lay perfectly still when he was supposed to. The scan showed no hidden abscesses! Of course, he is inflamed and has the one visible ulcer, but that is apparently improving, judging from the lessened pain and reduced redness.

SD's oncologist said that tomorrow we will "discuss a discharge plan". So far we know that SD will need to be on antibiotics at home, administered through his port using a pump. This is different from when we gave him chemo through his port, but our social worker said that a nurse from Munson will come to our house to train us how to do it. We're hoping to get him home tomorrow (although it will possibly be Wednesday) and see our little girl!

October 15, 2012 (Morning)

SD slept really well last night, praise the Lord! He got up after 10am, which was so good to see!

He seems to be in a lot less pain right now; his morphine wore off around 4am and he hasn't had any for the last 8 hours! His mood is also a bit better, and he likes his movies a little louder (indicating his headache is reduced).

At 3pm today he'll have a CT scan of his bottom to determine whether there's an abscess that is not draining. He definitely has one that is draining, but he may also have one that is not. This morning he allowed three doctors to lift his legs and touch the spot - although it did cause him a lot of pain. Yesterday that simply would not have been possible.

We're so thankful for his progress!

October 14, 2012

We learned a little more today. SD has either an ulcer or an abscess, which is why he's been so insistent on laying on one of us! This also explains why he has been avoiding stools; previously, we thought this was just due to constipation, one of the side effects of Lortab, one of his pain medications. If he has an abscess, there's a possibility it may need to be surgically lanced, which would increase our hospital stay by a few days.

Speaking of pain medications, we are taking him off all acetominophen-based meds (including Tylenol and Lortab) to see if his fever is already gone. So, SD will be using morphine as necessary for the pain (and as of now, it is necessary - he's receiving a dose as I write this).

The ulcer/abscess is probably caused by the same bacteria that started this whole thing. SD changed one of his antibiotics to another one to more effectively help his ulcer/abscess specifically.

In other news, his white blood cell counts have gone through the roof! Up until now, SD has been getting one shot in his thigh each night of Neupogen, a growth medium for white blood cells. This really helped his white blood cell count but has made his thighs very sore. His thighs and bottom have been his most common complaints of pain, with the "butterfly" (the butterfly needle in his port and its surrounding tape) being a close third.

This means that SD is no longer neutropenic, so we hope to get him out walking a bit today. There is a common area and an activity room in this wing of the PICU. Last time SD was completely bed-ridden, so he didn't get to see it. This time we're encouraging him to walk as much as possible; hopefully, he'll get to experience more of the "fun side" of the hospital. It helps that he's potty training because he often likes to walk a little each time he goes to the bathroom.

October 13, 2012

SD didn't sleep as well as expected last night. He is still in a lot of pain, even with regular pain medication. So far, he has insisted that either Stephen or Mandy be in bed with him so that he has something softer to lay on than the mattress and pillows.

Originally, we were hoping to get SD out for a walk today, but his ANC is still too low; even just going outside his door will expose him too much. So we'll be encouraging him to walk around his room instead.

We just received some more good news from SD's doctor. The bacteria has been identified, and it is one that can be treated at home! Also, SD's blood cultures from yesterday and today are negative. Once we have three days of negative blood cultures and SD's fever is gone and his absolute neutrophil counts have recovered, then we will be released home!

At home we'll have the new experience of giving SD antibiotics into his port using an actual pump. Previously, we've just given him IV "push" chemo at home, which is done by hand.

So, things are definitely looking up! We still have a few more days in the hospital (at least), probably in PICU the entire time. At this time we expect to go home Monday or Tuesday. We appreciate everyone's prayers for SD's speedy recovery!

October 12, 2012

Last week, we had our regular clinic visit after a month of runny noses and sore throats. SD and Emma were feeling better a couple of days before clinic, so we were hoping he'd be well enough to continue regular treatments.

Unfortunately, SD's blood counts were very low, in particular his white blood cell count and absolute neutrophil count. So he went off his regular chemo but kept his regular steroid pulse for the next week. During that time he was very susceptible to illness, so we isolated him at home.

SD was supposed to get his counts re-checked yesterday morning (Thursday). However, he developed a fever overnight. After consulting with SD's regular doctor in Grand Rapids, Mandy took SD into the ER at Munson at around 6 am.

Normally, we try to be understanding of medical care providers; they have some difficult jobs, work difficult hours, and most of their clients are under a lot of stress (which makes them difficult to work with)! But I must say we were quite disappointed with our Munson ER visit. Not only did they perform a series of X-Rays (which they do about 90% of the time we've gone there, and it has never shown anything), but they also made him wait for over two hours before they even drew blood for the labs. With all of the doctors and hospitals we've been in over the last 9 months, this was an astounding and unprecedented level of incompetence.

When Stephen learned that SD still hadn't even had his blood drawn, he gave Emma breakfast and they headed downtown, ready to kick butt and take names. Fortunately, that wasn't necessary; we think they already received a talking-to from our regular doctor. By the time the whole family was in ER, they had already drawn SD's blood.

SD was in quite a bit of pain and stayed in the ER bed on Mandy most of the morning. Emma was fascinated with all the hospital equipment; she got quite upset when we wouldn't let her sit on the beds in the hallway! Fortunately, Grandma Cleary was able to come down and take care of Emma.

Eventually, we got the results of the labs back: SD's absolute neutrophil count was practically unchanged since last week. Since SD was neutropenic and had a fever, they decided to transfer him to Grand Rapids. Instead of going by plane, this time he got to go in an ambulance! Mandy traveled with SD, and Stephen joined them later that afternoon, while Emma went to Grandma's house.

Interestingly enough, we are in the very same PICU room that we were in the first time we were transferred to Grand Rapids!

SD did not sleep well that night, even though he was sleeping on Stephen. He was in a lot of pain that afternoon and overnight. We gave him some morphine at around 6pm, and he started really sleeping around midnight. Even then, his sleep was intermittent; with all the fluids he'd been getting, he had to keep going to the bathroom (SD is potty training).

Most of today has been the same; SD has gotten some antibiotics, a bit of steroids, lots of lortab (like tylenol but stronger), and most recently a red blood cell transfusion. He's been mostly watching movies and saying "tata (Stephen) hurt!"

We are still waiting on the full results of his blood cultures. He definitely has a bacterial infection of some kind, probably acquired from his own gut. There are three major possibilities right now of what we're seeing:

• He just has a bacterial infection that we can treat at home. In this case, they'll keep an eye on him here for a few days. We'll be heading home Sunday at the earliest.
• He has a bacterial infection that has to be treated here. In this case, we'll have to stay here a minimum of ten days, going home on Monday the 22nd at the earliest.
• This is a relapse of his Leukemia. In this case, we'll be here an indeterminate amount of time as we completely start over with his treatments.

Update at 5pm:

Our doctor came in at 4:55pm after calling the lab people directly. They had just gotten the results before she called: the test results indicate this is *not* a relapse of his Leukemia, merely a bad bacterial infection. Praise the Lord, and thank you for all your prayers!

SD is finally sleeping peacefully on Mandy after taking a variety of medicines.

September 7, 2012

SD went to his first clinic in Traverse City today! When Mandy was getting him ready, he kept saying that he didn't want to go to the doctor. This has been becoming more of his attitude lately, but we still aren't used to it.

When we arrived, SD was given a giant coloring book, so he colored in that while we waited. Just as we were called to go in, Mandy realized that she had forgotten to put on SD's numbing cream! Normally, we have to apply numbing cream to SD's port an hour or so before he is accessed, and we stop to do it on the way to Grand Rapids. Since we were only going across town, we didn't even think of applying it at home! Fortunately, we were able to move through our appointment with no greater inconvenience than a slight rearranging of procedures, but Mommy felt badly over the decreased time the cream had to work.

SD's ANC was only 900, but he was able to get his chemo since it isn't one that affects his counts as much. We were instructed to keep his at-home chemo at the same dosages and won't be expected back for another month. This makes us a little nervous because of his greater risk of infection and because of how he handled 6-MP in January, but so far he continues strong and active.

Stephen went back to work after the appointment and Mandy brought SD grocery shopping to prepare for the Endless Appetite that comes with steroids. When they were done and headed for home, SD told Mandy that he wanted to go back to the doctor. I guess the anticipation was worse than the fact. :)

So far, it looks like SD will have one pulse of steroids each month, beginning on the Saturday after clinic and ending Wednesday. Prayers are appreciated, as always!

August 9, 2012

SD is officially in Maintenance!

Recovering after the "poke"

On Thursday, SD went to his first appointment in Maintenance. The beginning of the day mirrored his last early appointment: woke up fairly cheerful, kept asking for food and drink, had a hard time with the poke.... His skin over the port site seems to be getting more sensitive with each visit. We hope that with more time between accesses it will have a chance to heal, although it is just as likely that accessing will bother him more since it won't be so routine.

One of the other patients brought in a hermit crab and showed it to SD. SD was interested, but also quite wary of this strange creature.

Not too sure about that thing

Thankfully he was able to get his spinal tap an hour earlier than he did last time, so that helped with the hunger/thirst issue. He was quite clingy after his spinal this time, but all things considered, he was in a pretty good mood. Strangely, SD strongly preferred his mommy all day. Usually at clinic he only wants his daddy.

Still sleeping after the spinal tap

Nurse Mary brought in SD's file when we were asking many questions about the maintenance phase. Check out the size of this thing!

A lot of information since November

SD's maintenance gift

This visit felt like a great big good-bye, even though we'll be returning every three months or so. There were many congratulations, SD received a gift from Child Life Services, and Nurse Mary grew misty-eyed on a couple occasions. SD will surely miss her!

Monkeys. Meh.

To celebrate this milestone in his treatment, we brought SD to the John Ball Zoo after his appointment. He remained clingy when we arrived and we thought he might just want to go home; he insisted on Mandy carrying him everywhere. We went to see the monkeys and lions, where SD showed a polite interest but just wasn't getting that into it.

These lionesses did roar a bit, which SD liked

When we asked him what animals he wanted to see, he said that he wanted to see the elephants - but they don't have elephants. So he wanted to see the giraffes, but they don't have giraffes, poor kid. Well, they do have camels (and camel rides), so SD agreed to see the camels.

We asked SD whether he wanted to ride one, not really thinking he would want to. To our surprise, he said he did want to ride one. So he got in line with Mandy and climbed right up on that camel!

SD rides a camel

This is truly a BIG step for him and clearly boosted his confidence. We are so proud of him! The rest of the time we were at the zoo, SD acted much more independent. He wanted to walk on his own, he showed more interest in the animals (even wanting to pet the goats), and he was much more cheerful.

Not shy of the goats now

We've been told over and over again that the maintenance phase will be so much easier and that we'll feel (mostly) like a normal family again. Right now, we are getting used to multiple daily medications again. SD is back on Decadron (the steroid), so we're also adjusting to the steroid-influenced behaviors.

Again, big thanks go out to those who have been praying for us and helping out!

Headed home after a big day

July 23, 2012

It's hard to believe such a long time has gone by without an update from us! Sorry we've gotten so behind!

First, a quick followup from our last update: we took SD back that Thursday (July 12th), and his counts were great - easily enough to take the rest of his chemo.

SD really enjoyed playing Mario Power Tennis this time. He's noticed that game on previous visits, but this time he spent quite a while playing it with Mommy!

Our clinic visit went very smoothly. SD's counts were high enough to get all the chemo he needed to finish this phase, so on our next visit he will start maintenance!

As a reminder, maintenance is about three years long with monthly clinic visits. Also, we will be able to go to Traverse City for most of those visits; our trips to Grand Rapids will go down to once every three months. This will help with the gas expense!

During maintenance, SD will receive IV chemo once a month (Traverse City and Grand Rapids), IT chemo once every three months (Grand Rapids only), and oral chemo every day (at home). The maintenance phase lasts about three years for boys, so - Lord willing - SD will be done with chemo right around his sixth birthday.

We are excited about this milestone in his treatment! Big thanks to everyone who has helped him get to this point - God bless you!

July 9, 2012

Today SD was supposed to get one type of chemo in a spinal tap and two other types of chemo through his port. Unfortunately, his blood counts came back too low, so they decided to only do the spinal tap and keep the other chemo until Thursday.

SD was quite chipper this morning, and led us from the Renucci House all the way across the hospital to clinic. He remained cheerful until it was time to access his port; then the hunger and loss of sleep got to him and he took the poke much harder than usual. He continually asked for food until he was sedated, which was quite a bit later than usual today, and seemed exhausted after the extremely late night he had last night.

We hated having to wake him after sedation, and he wasn't happy about it, either! But we had grapes and pineapple on hand for when he awoke, which he hungrily put down in spite of not having all his coordination back yet. He had an emotional time for the remainder of our stay in clinic, which fortunately did not last long. We got our appointment for Thursday, SD picked out a water gun from the prize box, he was de-accessed, and then we met Grandma, Uncle Cory, and Emma in the library downstairs. Once SD was able to fill his tummy, he fell asleep for the rest of the trip and was much happier this afternoon.

Please pray for SD's counts to get back up by Thursday. It would be great if we could finish this phase of chemo in July!

June 28, 2012

This week contained one exciting circumstance worthy of note: SD got to see his beloved chiropractor, Dr. Jena, on Wednesday! His last adjustment was in mid-November, between our big trip down south (which ended in an inability to walk) and his diagnosis. We were finally given the go-ahead to bring him back to the chiropractor about two months ago, but right after that his counts dived and stayed down until just recently. They are finally at a level high enough to make us more comfortable about bringing him around town a bit, but now that he has passed the halfway mark in this phase, we'll probably cut back again until he reaches Maintenance. Only two more appointments!

His clinic visit on Thursday went very smoothly. Even with a Pentam infusion and his chemo, we were done within two hours. Nothing has changed in his health; he seems to feel good, remains active and cheerful, and still looks forward to trips to the doctor. The last two times he has whined a lot while the chemo is being pushed in; whether it's an unpleasant taste or feeling, or just apprehension, we're not sure, but he always gets over it as soon as the syringe comes off his line.

His next appointment is July 9 and will include a spinal tap. Prayers that he will continue healthy through this period are always appreciated!

June 18, 2012

We had a bit of a scare since our last update. While getting SD ready for bed last Tuesday, Stephen noticed some tiny bumps covering SD's left shoulder. They were pinkish, with a few white bumps that looked like they might have been fluid-filled. After speaking with the oncologist at DeVos about it, Stephen took SD to the ER at Munson to have him looked at just in case it was chicken pox. For those who are not aware, chicken pox can be extremely serious to immunosuppressed individuals, such as those undergoing chemotherapy.

The doctor in ER didn't think that the bumps on SD's shoulder looked like chicken pox, but there was one bump on his hand which he thought looked more suspicious. Mandy had noticed this bump earlier and SD had asked her about it; she explained to him about bug bites, and that's what he told the doctor it was.

SD is glad to be home!

Our gut feeling was that it was not chicken pox, but that's how we felt when we learned SD might have leukemia, so we were taking no chances. The ER doctor spoke with DeVos, and the doctor there wanted SD down for observation right away. So Stephen came home and picked up the bag Mandy had packed for him and headed south at about 1:30 am. They arrived at DeVos at 4 am and were seen by four or five doctors while in absolute isolation over the course of the morning. All agreed that it was not chicken pox. No one knows what it was, but they sent him home at 11 am with a very relieved but exhausted daddy.

Apart from that incident, SD has been doing great! He is currently on day 11 of Interim Maintenance 2 and received an increased dose of methotrexate, along with vincristine today. So far he is taking the chemo well; we don't anticipate problems from the chemo itself, as he tolerated it well during the first Interim Maintenance phase. He will, however, be receiving a greater amount of chemo than he did during that first IM phase, so mouth sores and rashes are a possibility.

SD's hair is working on making a comeback! He actually never went completely bald, which surprised us. When we went into Delayed Intensification, Dr. Kurt promised us that he would lose his remaining hair, but he held on to a light covering of sparse, long strands. While his eyebrows and lashes thinned out, he never completely lost those, either; this is the second time during treatment that he started losing his eyelashes, only to have a new crop emerge well before all the old ones fell out. We've noticed that the majority of SD's new hair is coming in blonde, as it was before, but he has some darker patches emerging as well.

We are thankful for how well SD is doing. Today he was even giggling and acting goofy during our clinic visit! Several of the nurses mentioned his excellent attitude and had fun being silly with him.

June 7, 2012

SD is officially in Interim Maintenance 2! This is the final phase of intense chemo treatment. Once IM2 is done, he'll only need to make monthly trips to the doctor and will receive most of his chemo orally at home. Our family is very excited about how close the end of this is!

After a late night last night, SD awoke very tired this morning, but did well in clinic. He didn't need to have labs drawn since his counts were checked in Traverse City yesterday, so after having his port accessed we waited in the playroom for the "road trip" to sedation. We watched a couple wildlife documentaries about African animals (SD's favorites) while we waited; SD was quite enthralled with seeing the animals in action rather than just in books or toys.

Although SD is usually mommy's boy at home, at the hospital he is often a hard-core Daddy's boy. He wouldn't go to Mandy today for more than a few seconds at a time, not even to keep his poor freezing mommy warm. Lesson: always bring a sweater, even when it's 80 degrees or higher outside!

As usual, the spinal tap went just fine and SD had a hard time waking up. The last couple times, SD has become very squirmy after coming out of sedation, and today was no different. He desperately wanted food and once he finally got some he settled down. His Pentamadine was started soon after we arrived back at the clinic, SD got his lunch, and then received his chemo shortly after his infusion was over. It's nice when the clinic is not busy; we were out by 12:30pm!

We will go back to Grand Rapids every ten days through mid-July for very similar treatments each time. Please continue to keep SD and our family in prayer as we travel back and forth and SD undergoes increasing doses of chemo with each coming appointment!

May 31, 2012

We brought SD to the Traverse City clinic for counts on Monday, May 21. His platelet count had gone down to 46,000. He didn't need a transfusion, but since they were still headed downward we had to check again that Thursday. By then, the count had jumped to 330,000 on its own!

Waiting to hear that SD did not need platelets!

SD was originally scheduled for a spinal tap today to kick off the second Interim Maintenance phase. A call from the hospital yesterday changed that; another child needed a procedure today, so they needed to move SD's to a later date. They kept him on for his chemo, however, so we headed down to stay at the Renucci House last night.

Everything went as planned in clinic today until SD's lab results came back with a shocking result for us all: his ANC had dropped to 210! That means no chemo today. He seems to be feeling very well, but Dr. Kurt thought he might be fighting a cold or some other kind of infection, which would explain the low neutrophil count (it was at 896 a week ago). On the plus side, all his other counts have continued to inch up since last week.

So. We will check his counts in Traverse City next Wednesday. If they are high enough, we'll head back to Grand Rapids and try again on Thursday.

May 17, 2012

SD no longer has to take chemo in his port at home. We had two 4-day (Thursday - Sunday) rounds that we had to give him. At the end of the first round, we had to de-access him at home. The needle in the picture below is what goes into his chest every time we go to clinic to draw blood and inject chemo (click on the picture to see it full-size). Mandy gave SD chemo through his port on eight different days; she was very brave, and so was SD!

As planned, we took SD to Munson on Monday to get his counts checked. He didn't look extremely pale to us (he has always been Very Fair; there aren't many more shades of pale one could be) and had good energy, so we figured that it would be a quick visit. It turns out that his counts had actually gone down quite a bit and that he needed some blood. Just getting that information took over two hours and we had not come prepared for a long stay! They allowed Emma to be with us, so it was a bit of a challenge to get through a long day confined to a little room, but we managed. Actually, the nurse was extremely impressed with how well the kids did - she was still talking about it when we went back today!

The transfusion took three hours, but we were at the hospital between 6 1/2 - 7 hours. Thank goodness there is a Meijer so close by! Stephen went out to pick up some food and a couple things to occupy SD and Emma. We were given our own room because SD was so neutropenic that the nurse wanted to keep him away from other people as much as possible.

After his transfusion, we were amazed over the change in SD. As mentioned above, he was energetic and cheerful before (although we were still dealing with the bouts of odd behavior mentioned in our previous post), but he had SO much color and was even more cheerful, laughing and giggling all the time like he used to do. The frightening thing for us is that he was that low in his counts and we didn't recognize it at all. We just can't get over how a child needing blood could still be as active as he had been.

SD had his counts rechecked today. While his hemoglobin is way up thanks to the transfusion (11.3 as opposed to 7.7 on Monday), his platelets and neutrophils have gone way down even since Monday. They haven't been this low ever, even during induction (except when he didn't have any neutrophils during the first few days after diagnosis). His risk of infection is very high right now, so we still need to be especially careful about what he's exposed to. We are just keeping him at home or outdoors, aside from the necessary hospital visits. He needs to go back on Monday for another blood count, and they expect to have to give him platelets that day.

We're so thankful for blood donors! SD's life was saved by multiple blood transfusions at the end of November, and he may need more transfusions before he's fully recovered. To all blood donors everywhere, we say *Thank You*!

May 10, 2012

All through last weekend we were amazed over how wonderfully SD was doing. Even after his spinal and long, chemo-filled day last Thursday, nothing changed from our last report of him for several days. We kept expecting to see him lose energy or become moody or complain of pain or something, but he just stayed bright and energetic. We so enjoyed having our little boy back!

On Monday things started to take a turn; he's been acting rather strange, almost like he's on steroids. We think it might be the 6-TG. He frequently says "ow" but when he ask him about it, he won't give us any hints to what bothers him. He gets extremely upset over little things, often screaming or hitting over them, but if we keep things light and smile at him, he will often instantly turn around and smile back as though he was joking. It's odd.

SD's clinic appointment brought a couple pleasant surprises to us today. First, SD only received Pentamadine, so he had no chemo in-clinic. This made our stay into a quick three hour visit. The other surprise was that we aren't scheduled to go back for three weeks! We were thinking that the rest of the month would still be somewhat intense, but it turns out that all he has left to deal with this month is two chemo drugs taken at home. One is called ARA-C, which is the one we administer via his port; he will take that one tonight (Thursday) through Sunday. The other is 6-TG, of which he has one week remaining.

His counts are a little low, however, so we'll be getting them checked in Traverse City on Monday. One convenience to SD's remaining accessed for the ARA-C is that we can wait an extra day to take his needle out, allowing him to have his blood drawn in TC without an extra poke. If he does need a transfusion (his hemoglobin is about borderline right now), he'll already be set up for it. As long as he continues to do well, he won't need to return to DeVos until May 31. And...that will be the start of Interim Maintenance 2!

May 3, 2012

Over the past week, we realized that we'd almost forgotten what SD was like before his illness. Because of the set-back last week, he hadn't had any type of chemotherapy for two weeks and obviously felt much better than he has in five months. He's been the vibrant, joyful child that has become a distant memory to us, having seen only glimpses of him to remind us he really is still there.

As is usual the night before an early appointment, we spent Wednesday night at the Renucci House. We arrived just in time to be treated to a delicious home-cooked meal provided by a local company for guests of the hospitality house. Many groups contribute in this way, which we appreciate so much! SD wanted to watch Winnie the Pooh when we settled in our room, so we got ready for bed and turned it on in hopes that it would help him get to sleep. This sometimes works. Not this time. Mandy suspects this had something to do with her sharing her ice cream with him (a RARE treat!) at 7:00 PM.

SD invited Mandy to sleep on his bed again. He considers this another rare treat, it seems; he smiles and giggles for the longest time before going to sleep, plays little games, comments on the city noises, holds his Mommy's hand...

Despite his late night, SD woke up on the morning of his long clinic day in fine spirits! He was cheerful most of the time we were getting ready. Since he was getting a spinal tap in the morning, he couldn't eat breakfast; Stephen and Mandy also skip breakfast on those days. In spite of that, he was happy to go see the "doctor" and get "poked", pushing elevator buttons and playing Angry Birds on the iPad as we made our way through the hospital.

SD acted like an old pro during the basic checks: he knows how to hold his arm for the blood pressure, Oxygen sensor, and thermometer. He knows where to stand to get weighed, and he knows not to lean on anything while they're checking his weight. He knows where to stand for his height measurement, though he doesn't quite put his feet back to the wall. These basic checks are done every time we go to clinic, and it's a well-known and comforting routine.

Nurse Mary came in and accessed his port (as a reminder, this means that she stuck a butterfly needle into him and taped over it to make an IV). SD began calling her "MehMeh" for the first time. Then Doctor Mary came in and gave him a brief checkup; after last week, they wanted to be sure it was safe to sedate him.

After his checkup, we went into the play room and SD chose a "poke prize." About half the time he's not interested in the prizes at all, but this time he wanted three! Two were bug collector kits, and he was also interested in a baseball bat with ball. He settled on one of the bug collector kits; it'll be interesting to see what he does with it this summer! While we were in the play room, we also met a young girl - probably 13 or so - who had Leukemia (ALL, just like SD) when she was 10, and has been off chemo for over a year, but recently started having headaches. So she was back in for a procedure to determine if her cancer had returned.

We were the first ones to go into sedation. While we were waiting, one of the male nurses started blowing bubbles for SD. This started a "bubble theme" that would continue throughout the day. The only thing different about this sedation was that SD actually fought it; he usually drops off immediately, but this time he really did not want to sleep! He also didn't want to wake up, which is normal. We always feel bad waking him up because he almost never gets a good night of sleep before an early clinic, but we have to wake him up before the sedation doctors can leave.

Most of our day in clinic went by swiftly! SD spent a good deal of time playing Angry Birds and Curious George at the Zoo. He also watched Winnie the Pooh (the 2011 version). We kept trying to get him to do other things, but he preferred brainless activities. we had planned to work on a birthday card for Uncle Josh (and SD was looking forward to it), but he would have nothing to do with it during his clinic visit.

Mandy and Stephen tried a grilled mushroom pizza for lunch; the clinic provides SD's lunches (pb&j that day), so he did not eat mushroom pizza.

SD did get to talk to Uncle Josh at one point, which he greatly enjoyed!

Near the end of our day in the clinic, we returned to the play room. SD got to play the Wii a bit, and Mandy gave SD chemo through his port for the first time.

Overall, SD did so well! Especially for not getting a nap. He only briefly got sassy at one point, but other than that, he was bright and cheerful the entire day!

After our clinic visit was over (about an hour earlier than we were expecting), we returned to the Renucci house. SD and Mandy pretended they were frogs while the dinner was being prepared.

Once dinner was complete, we played outside again until it started raining. When SD felt the drops on his head, he put his hand on his head and ran for the door!

It's hard to think of how the day could have gone better. We are so thankful for everyone's prayers!

May 2, 2012

This is just a quick note to say: last week when we went into clinic, the doctor decided that SD's congestion was too significant to sedate him. (They did sedate him when he was that congested during our first week at the hospital, but that was an emergency situation - they had to take over his breathing and everything). So, SD had his port accessed in the morning and they started him on fluids, but then we ended up leaving around 10 am instead of being there all day.

We rescheduled for this week (tomorrow, actually). SD's cough has been getting better, so we will hopefully spend about 10 hours in the clinic tomorrow.

We have mixed feelings about the clinic visit tomorrow. SD has been more himself the last few days than ever! He's been smiling and laughing and talking so much! Of course, it's better for him to get his chemo, but we know it'll give him a lot of pain (at least). We do expect SD to regress again this next month (starting tomorrow) - his temper, patience, energy, and vocabulary are all hit pretty hard by chemotherapy.

April 23, 2012

SD's steroids have been wearing off. His last dose was Wednesday night (the 18th), and he has been slowly returning to normal more each day. He's not quite back to normal - even today, he will occasionally have a mood swing and suddenly get upset, to the point of shaking (usually accompanied by a brief scream). He is now able to control it, though; we tell him to "settle down" and he will concentrate and return to normal in a few seconds. Of course, it's hard to tell how much of this is inborn stubbornness and rebellion, and how much is due to the steroids.

When he's not having "steroid rage", he's usually quite a happy boy! He doesn't laugh at all while he's on steroids; his laugh returned to our house again a few days ago as the steroids started wearing off. It's odd, but this time, we didn't even realize his laugh was gone until it came back.

Stephen took Emma to church last night. It's sad to say, but going to church is becoming a rare event in our lives! SD was so sweet; he wanted so much to go to church! "ah-Me! ah-Church!" We did our best to explain to him that he could not go, and his face was so crestfallen! We felt bad making him stay home, but we have to limit his exposure the next few weeks.

Emma was quite sullen the whole time - we think she thought we were taking her to a sitter. Poor girl! She finally cheered up in the car when she realized we were on our way home.

We would like to ask special prayer this week, especially for Thursday. We are going down to Grand Rapids on Wednesday (and we hope to see the butterfly exhibit again that day). Thursday morning we report to the clinic before 8AM, and SD will get some blood tests done. If they come back OK, then he will start the day with a spinal tap and then be attached to an IV pole all day (8-9 hours). Since that's such a long day, we're planning to spend that night in Grand Rapids, too.

SD will be getting four different chemotherapy drugs on Thursday. One of them hits the bladder hard, which is why he needs to be on an IV: he'll be getting IV fluids for a few hours before and after that drug, to minimize the chance of damage to his bladder.

So, we'd appreciate prayers in particular for:

• SD's blood work to be good enough for the chemotherapy. If he gets sick, or if his body hasn't recovered sufficiently from his most recent chemo, then we'll have to just go home Thursday and try again later. That would be inconvenient - both for finding a replacement babysitter for Emma, and for the additional expense of travel and hotels. So hopefully his blood counts will be good and we'll be able to continue his chemo this Thursday.
• SD - and us - for patience, as we spend the entire day in clinic. SD does not really relax while he's there (understandably), and he will probably not like being there for so long.
• SD's body as it reacts to the new chemo drugs. Three of the drugs will be brand new for SD.

April 12, 2012

SD received his last dose of doxorubicin for the month today! We don't know if he'll get it next month or not, but it is one of the drugs that has seemed to wear him out a little extra, so we are glad to see it go.

He has resumed his steroids today, however, and we noticed a difference in him in about six hours. Next Wednesday (when he gets the last dose of this pulse) can't come soon enough!

Speaking of steroids, we've noticed that SD seems to have a boost in mental development each time he comes off. We aren't sure whether this is simply perceived by us since he sort of shuts down while he's on them, or if his body is actually playing catch-up. Either way, we watch with wonder as he continues growing and learning.

As expected, SD's counts dropped this week, but he was able to receive all his chemo today. The steroids he's taking this week should boost those numbers, and we don't plan to bring him anywhere while he's on them, so his chances of staying healthy are pretty good. Of course, prayers that he will not get sick are still very appreciated!

To help us all get through this more intense phase, Grandma Cleary has generously loaned us her iPad. SD's favorite game is Angry Birds, and he'll usually play that as long as we'll let him, no matter how he's feeling. One day Emma wanted a turn, and when it appeared that a fight (or at least hurt feelings) was imminent, Stephen joked that maybe we should buy two iPads. SD agreed that we most definitely need two iPads; he got quite excited and exclaimed "ah-two! ah-pad!".

Butterfly Exhibit (April 11, 2012)

We've wanted to do something special with SD while in Grand Rapids for awhile now so that all of his memories and associations of the place are not pokes and chemotherapy and doctors. We finally had our first opportunity to fulfill that desire today!

A friend graciously took Emma overnight so we could leave a day early and take SD to the tropical butterfly exhibit currently featured at the Frederick Meijer Botanical Gardens.

It took SD a bit to wake up after our drive, but he seemed to enjoy seeing the butterflies. He liked the birds we saw even better, but his favorite part was definitely the bridges. Once he noticed those, he couldn't get enough of leading Mandy over each one multiple times.

When we asked SD to pose for a picture, he decided it was time to play with Mommy's hair.

We finally convinced him that there was more to explore outside, and strolled over to the children's garden. They had a "five senses" section with plants for each of the five senses. SD looked, smelled, felt, and listened. He especially liked the smelling and feeling.

A little further down, they had a scale replica of the Great Lakes, complete with little boats. SD enjoyed navigating the Soo Locks a few times.

The children's garden included several learning trails. SD was initially apprehensive about entering this beaver's home, but he agreed to go in once Mandy did. Mandy unintentionally scared him with a beaver puppet, but SD recovered quickly and ended up enjoying this little play place.

Just before we left the beaver house, SD started tracking a robin on the boardwalk. He was attempting to be stealthy as he walked towards it, but the robin cautiously hopped further away until it turned a corner. We continued on to the tree house.

We think one of SD's biggest enjoyments was the rope bridge in the tree house. He was enthralled with how the bridge moved! SD crossed this bridge at least a half-dozen times!

We're so thankful to everyone who helped make this day happen! We don't want SD to think of "hospitals" or "doctors" as painful experiences, and we're sure this day will help with that. Specific thanks go out to our friends who watched Emma overnight when they were asked at the last minute, and to Frederick Meijer Botanical Gardens for giving us a special rate. This was a great day!