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!

Easter (April 8, 2012)

We didn't set high expectations for Easter this year. SD was working Decadron out of his system so we decided not to take him to church, and Mandy didn't feel up to making a big, fancy dinner after an exhausting week of dealing with steroids.

However, we wanted to make the day special for the kids, so we dressed up as though we were going to church and had our own little service at home. While Mandy was dressing SD - and before any mention of footwear occurred - he informed her that he did not want to wear shoes; he wanted to wear his rain boots. So he did.

We sang a couple resurrection-related hymns (the kids excitedly turned the piano accompaniment into a trio), then settled in on the couch while Daddy explained the reason we celebrate Easter. SD paid close attention, nodding his head and saying "uh huh" at every opportunity.

After hearing the Easter story, we asked SD and Emma if they wanted to go outside. Of course, they eagerly raced toward the door, so we bundled them up and Stephen took them out while Mandy hid their Easter baskets.

It was quite chilly and blustery that day, so we stayed out only long enough for them to find their baskets and inspect the contents. SD had been asking for eggs and toast for awhile, so we went inside and ate that for lunch.

Rather than a traditional ham dinner, we had something new to all of us - baby back ribs. Stephen's mother had given some to us earlier in the week, so we decided to try something different this year. Emma just wanted a little taste, but SD loved them!

Although we were disappointed to miss the Easter service for the second year in a row, we enjoyed a delightful, all-around pleasant day. The Steroid Monster did rear its ugly head on a couple brief occasions, but for the most part SD was our smiling, cheerful little boy all day!

April 2, 2012

SD began the Delayed Intensification phase last Thursday. As the name indicates, treatment has been stepped up; already, struggles and emotions that we faced back at Induction have returned, but so far not to the same level. Most of this is caused by SD's resuming a twice daily dose of steroids. We thought that if the drugs affected his personality this time, it probably would take about a week; unfortunately, it started after two doses. The steroids hit him hard last time and he is taking nearly twice the dose that he was taking before; it seems that his body well remembers this medication. So far he is still self-mobile, but from the day after he took the first dose he has had a fear of falling and wants to be held or carried most of the time.

He also started a new drug last Thursday called Doxorubicin, which is a bright red. Up to this point, he has managed to hang on to some of his hair, but it sounds like this medication will most likely take what's left. He will receive two more doses of the Doxo this month.

SD went back to the Clinic today for the first of two spinal taps during the month of April. While he was sedated for the spinal, he also received a PEG shot in each thigh. He had PEG shots a few days after his diagnosis, so we know how advantageous for everyone - especially SD! - having it scheduled on a sedation day was. He will still be sore from it, but he didn't have to go through feeling the medication enter his muscles. SD was pretty wiped out by the time we got home!

We will be heading back to Grand Rapids for the third time in a week on Thursday for Doxo and Vincristine. It will be the last day of the first pulse of steroids! SD will then take seven days off before the second pulse starts.

We're still getting used to lots of medications again! For quite a while SD only had to take Fluconazole at home; pictured below are his evening medications from last Thursday: Prevacid (to prevent stomach upset), Fluconazole (to prevent fungal/yeast infections), Zofran (to prevent nausea), and Decadron (a chemotherapeutic steroid).

Barring delays, which are actually pretty likely since some of these medications will lower his counts, SD will have a Big Day at Clinic on the 26th. SD will receive a spinal tap and three new medications, one of which requires thorough hydration after no eating or drinking past midnight the night before. We expect to be there all day. One of the medications beginning that day will need to be administered at home via SD's port. The thought makes us rather nervous, but we began training for it today. Mandy prepped and flushed SD's line with a saline solution, removed the window and tape that covered the butterfly needle (ouch!), and pulled the needle out. Nurse Mary told us that deaccessing the port is the hardest and most nervewracking part of what we'll have to do. Since one of us has done it now and we still have a few more chances to practice before doing it by ourselves, we already feel more confident.

Delayed Intensification is a two month phase, but since delays are expected, we've only received a (tentative) schedule for this month. Because of lowered blood counts, we'll be mostly keeping SD at home, apart from taking him to his appointments. Our main prayer for the next two months is that he'll be able to avoid infections, thereby avoiding further delays.

March 14, 2012

Today was SD's last appointment in Interim Maintenance I. He received his monthly transfusion of Pentamadine, his two chemo meds, and an EKG (all chemo patients undergo an EKG periodically just to monitor whether the treatment might be affecting the heart). He has a 2 1/2 week break before beginning Delayed Intesification on March 29.

SD's nose started running the day after his last clinic visit. It continued building up for a couple days, causing quite a cough, and he developed a low-grade fever on Thursday. Since a low-grade fever could send him to the hospital for a couple days, we were a bit concerned; his temperature did not quite reach that point, however, for which we are very thankful! Since he never lost his energy during his cold (or whatever it was), he would not have been happy being confined to a hospital room for a couple days. He is still hanging on to that cough and has a slight wheeze which goes away in different positions, but is mostly recovered. It was the first sickness he's had since the virus that initially sent him to the hospital and ended up with a leukemia diagnosis. We are glad that he's been well for this long and that it was not serious. We expect his counts to go down during the upcoming Delayed Intensification phase, however, so we'll need to keep him at home for much of that period.

Currently, SD is looking forward to the arrival of his Grandma Snell and Uncle Josh in a couple days. We hope that all signs of his little illness are gone by the time they come!

March 5, 2012

From a medical standpoint, there is not much to report. SD has been doing great during this phase of treatment. It's often hard to tell just what he is feeling; we know he is sometimes in pain because he will occasionally groan during the night and say "ow", but so far it hasn't kept him awake. He sleeps quite well most of the time. During the day he is usually bright and cheerful...although he does have his moments, like any other two year old.

His personality has really been flourishing, in spite of what he's been going through. Shortly before his diagnosis, he seemed to grow increasingly shy, even around people he knew. We later found out that this is a common occurrence in children leading up to this diagnosis. Lately, his shyness has been disappearing, even though he hasn't been spending much time around people. He seems more at ease during clinic each time we go, and at a recent trip to the library he made a new friend. Even before he got sick, he was somewhat shy, so this is a breakthrough for him.

At his February 23 clinic visit, SD got to meet a lot of new people: some patients, parents, the lady who makes his chemo medicine, and some of the nurses he hadn't seen before. He has started "talking" to most of the staff who talks to him (usually "uh huuuh" is his response to any question, although he will say more to some of them, Mary in particular) and has gained a confidence that is heartening to see.

A snow storm swept through our area over the weekend, knocking out our power at home. Since that meant no heat, we decided to go to Grand Rapids a day earlier than planned for today's appointment. Since we left so early, we brought Emma with us; Stephen stayed with her while Mandy brought SD to his appointment.

SD had his only scheduled spinal tap for this phase of treatment this morning, checking for leukemia cells, as well as receiving IT chemo. The preliminary results came back normal. The boy likes to stay asleep after sedation; it would be nice if we could let him! But Mom came prepared with grapes today, something he asked for nonstop all day yesterday (along with cheese). Last night Stephen went out to buy some, so SD was able to satisfy his craving then, but the first thing he did this morning (and yesterday morning) was pop up in bed and say, "Bray. Eh she." (Which translates to "Grapes. And cheese.") Unfortunately, he was NPO, so he could have nothing, but he is starting to understand that better than he could back in the Dark Days of Steroids. When he woke from sedation today and heard the word grapes, he was so eager for them that he immediately tried getting off the bed all by his loopy self, which was quite amusing to witness.

Speaking of SD's understanding some things better, he has started asking about when he'll see the doctor this week. He has asked several times, sometimes asking about the doctor, other times about getting poked, but he has never asked anxiously. In fact, he has almost seemed to look forward to today's visit. We try to keep the thought of clinic very positive, as do all the staff, so that probably helps.

P.S. If the person(s) who sent us the anonymous Valentine card is reading this, THANK YOU! You really made our day.