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!