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!