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*!