May 10, 2018

Throughout the course of SD's treatment, we have focused on milestones. Some were minor, and some were major. It helps to focus on milestones; it gives you a sense of progress, even though the road may be long.

Recently, SD passed a milestone of sorts. As best as we can figure, he has now been off chemo for as long as he was on it. That's 1,162 days... more than 3 years without chemo!

SD has been growing a lot! He enjoys reading, playing the Wii (when he gets a chance), school, and digging a huge hole in our backyard "with a purpose obscure to the adult mind."

SD reading to "baby" Eden.

Thank you again to all who have prayed for him and been an encouragement to us over the years! Our hearts are full of gratitude to our friends, family, and Heavenly Father.

We are looking forward to our next (and most likely final) milestone in February of 2019.

February 2, 2016

One year has passed since our last entry here. Today is exactly one year since SD officially completed his treatment. One year since this glorious moment:

To say that SD has been doing well does not go nearly far enough. He has been doing *wonderfully*. In fact, he seems like a completely different child.

The change in him began almost immediately. The day after he took his last dose of chemo his spirits were up, and we continued to watch in awe as daily we saw our happy, vibrant boy coming back to us bit by bit. Along with his raised spirits came an increase in energy, in openness, and gradually, in strength and growth.

While his chemo was going on, we just assumed he had a very reserved personality (like his parents). As the chemo effects wore off, we were repeatedly surprised by how his personality changed! It was like he blossomed more each week, becoming braver and more adventurous. Many times we remarked to each other "so this is what it's like to have a five-year-old boy!" Our household had fun adjusting to this renewed person!

We're very pleased that SD and his sister have been growing closer. One of the hardest things to see early on in his treatment was how he was in too much pain to play with his sister, and it is so good to see that relationship really taking off now!

Of course, it hasn't been all roses. There was one interesting time a few months after finishing his chemo, when SD caught a summer cold. His immune system wasn't built up to full strength yet, so we were watching him closely. He proceeded to get just as sick as you usually do with a cold. We were already mentally preparing for a hospital trip, because for years the normal routine had been to go into the hospital once SD got past the "too sick" level. And he had never recovered from a cold on his own. But then, something amazing happened: SD got better by himself. This had not happened in so many years it took us a bit by surprise!

He still has a ways to go, too. After his chemo was done, he still had to have about six months of other medications while his immune system recovered. We are thankful that now the medications are all done! Over the last year, SD has had to go into the hospital once a month to get his blood drawn for a CBC. He had his port taken out in March, so his blood draws are always through the arm now, which he does not like. And he'll have to get those periodically throughout the rest of his life. But overall, the past year has been filled with happy milestones! The most recent of which came last Friday when we were told that SD will be going from monthly clinic visits to quarterly check-ups!

Just 10 days after SD finished treatment, we were surprised with baby news! SD now has two younger sisters, and the new one loves him incredibly! SD had wished for a baby for at least two years, and now his wish has finally come true!

Another milestone we celebrated recently was the decommissioning of his medicine cabinet, four years to the day after his diagnosis. This cabinet has been a fixture in our house for many years, but once it was clear he would not be taking any more medications, we took great pleasure in re-purposing it!

Before...

...After!

Having fun with some old supplies!

While we were cleaning out the cabinet, we collected SD's "logbook". Here's the first and last pages, with many, many pages in-between:

Over the years, we totally lost track of how many blood draws, spinal taps, and bone marrow draws SD has had. Let's just say there have been "many." A rough estimate would be around a hundred blood draws, 20 or 25 spinal taps, and 3 or 4 bone marrow draws.

In conclusion, we would like to thank God for His faithfulness, and thank you all who have helped us out over the years. Even little things like coming over and doing dishes have been a big help along the way!

And especially thank you to all the blood donors! We were not allowed to be blood donors, because just in case SD needed a bone marrow transplant, we had to be ready (and you can't donate bone marrow if you recently donated blood). SD has had about a half-dozen blood transfusions, and they definitely saved his life.

Here's a graph of SD's red blood cell count. The blue line across the top indicates the "anemic" level, and the grey line across the bottom is the point at which SD's doctors usually ordered a transfusion. The goal of chemotherapy, of course, is to carefully walk the line of enough poison to kill the cancer but not enough to kill the patient. Every time SD's blood count jumps up straight vertically on this graph, it was the result of a blood transfusion:

Of special note are the very beginning and ending of this graph. It's obvious on this chart when SD's chemotherapy ended; his blood is now firmly in the healthy range. You can hardly see the beginning - his red blood cell count was so low, he had two transfusions the first day and another one a day later! Again, words cannot express how thankful we are to blood donors - you definitely saved our son's life!

Thanks again to everyone who helped us through this trial. You can see for yourself how much better SD is doing!

Happy and HEALTHY!

Hamming it up for the camera!

Lost a tooth

Baby arrives at last! He's so in love.

First day of school!

February 2, 2015

This will likely rank as the most exciting entry we will ever post on this blog. To begin with, Friday before last (January 23) SD had his final chemo treatment at clinic! Tara "the art lady" made SD a sign for the occasion, and we snapped a couple shots of SD with some of the wonderful oncology team who have led us through treatment. Thank you, Michele and Dr. Cornelius for faithfully travelling to Traverse City every couple weeks so that northern families like us don't have to travel so far for clinic every month! Thanks also to our local nurse Sandy!

Top: Nurse Sandy Coil and Dr. Cornelius.

Bottom: Nurse Michele Van Soelen.

Apart from the fact that it was the last clinic of its kind, this clinic was like any other. Everything went smoothly, and his counts were on the higher side, for him, so for the final dosages of all his remaining oral chemo he was able to finish strong with full strength of everything. We had fun doing the final countdown over the past week or so:

January 23: Final vincristine!

January 28: Final steroid!

January 29: Final methotrexate!

February 2: Final mercaptopurine = FINAL CHEMO PILL!!!

We have anticipated this day for 3 years, 2 months, and 5 days. It is with some disbelief that we look at our son tonight and try to realize over and over that he is DONE with his chemotherapy. ("Also steroids," he chimes in every time we say it. Because we can't stop saying it.) He has lived well over half his life undergoing this treatment; the days before it all began are in the distant past in our minds, and don't even exist in his memory. It will be interesting to watch this amazing little person develop without the influence of strong drugs on his system. If what we've seen recently is any indication, he is going to flourish!

Along with the end of treatment comes a somewhat surprising mixture of emotions. Not all are positive, but the uppermost feelings certainly are! To mark this momentous occasion I took SD and Emma out for an afternoon focused on him. First we filled our bellies at Bob Evans where the kiddos received a free cookie. Celebration day cookies! :)

Then we went to the barbershop: a new look for a new phase in life!

Before:

AFTER!

He still has enough hair to ward off a little of the winter chill. :) There was also a chihuahua there which the children enjoyed.

After a trip to the mall we stopped by the library to get SD his own library card! I forgot to pick up a wallet to keep it safe in while we were at the mall, but that will come soon.

SD thoroughly enjoyed his day, but this was the most exciting part for his parents:

SD's LAST CHEMO PILL, about to disappear...

...and it's gone.

I mean, it's GONE!!!!! I'm still in disbelief. Goodness, that picture is making me tear up.

I'm feeling a little too much for many words right now, so I'll keep this simple. We could not have made it this far without the help of many wonderful people and I won't even begin to name any names because I would surely leave some out (except for Mom Cleary - I cannot even begin to imagine what this journey might have been without her incredible devotion to our family). Whether you helped us out in any physical or supportive way or were a prayer warrior on our behalf (those prayers were felt, believe me), thank you. THANK YOU!! Unless you've been in a difficult situation like this, you do not know what the most seemingly insignificant gesture means to a family going through a struggle.

And now I must ask that you keep on praying for SD. He is not necessarily in the clear yet, and will be closely monitored for the next year for relapse. We will meet with his oncologist later this month for his end-of-treatment interview, and in March his port will be removed. In all honesty, the many "pokes" he will be receiving without that port in might prove harder on him emotionally than much of the treatment he has already undergone, but at least we know that he will be getting stronger all the time and I trust he will manfully bear the burden. :)

With that said, you may have guessed that this blog will not be put to rest quite yet. Thank you for reading and for your encouragement along the way! We hope you'll stay tuned as SD begins yet another "new normal."

December 18, 2014

The final countdown is on, friends: SD has passed the 3 year mark since our last post and had his LAST spinal tap earlier this month! He is down to two steroid pulses remaining, which means less than two months left in treatment. Honestly, he does not remember life before treatment and witnessing the excitement of his parents seems to have taken him by surprise. He doesn't understand what we're excited about!

SD's December clinic appointment went smoothly, although his white blood count (WBC) and absolute neutrophil count (ANC) were quite low. After he was finished in clinic we hung around the hospital library to wait for the annual Pilots for Kids Christmas party.

The Stephens teamed up against Mandy in a game of Scrabble
while we waited for the party to begin.

SD was completely withdrawn at first, but eventually he opened up enough to enjoy participating in some of the activities and crafts they had there, and came home with a new card game (Old Maid). He even managed to avoid a meeting with Santa Claus, whom he watched with a leery eye whenever he wasn't engrossed in his various activities. ;)

Because of his low counts, we had him checked today and his WBC and ANC are even lower than they were two weeks ago. Because he is neutropenic, we're back in isolation mode and he'll be off chemo until at least next Tuesday when he'll get checked again. He has had a bit of a cough (nothing serious, just lingering) since around Thanksgiving, but we need to watch him closely for any further signs of illness now. Prayer request: no fevers! We'd love to have a healthy Christmas spent at home rather than in a hospital room. :)

November 11, 2014: Special Edition

As you all know, SD's counts were a source of concern throughout September. We still are not entirely sure what happened, but after about 10 days off chemo his numbers began improving. He had his last count check on October 8, and all counts were fantastic! I do not remember the last time they were so high - his white count was over 10,000! Since they were around 0 a couple weeks before, this was far better than we even dreamed could happen and a wonderful answer to prayer. With these numbers, we were given the go-ahead to do something very special as a family.

Awhile back, SD had an interview with a couple lovely ladies from the Make-A-Wish foundation. One of the things SD really wanted to do was meet some of his favorite characters like Buzz Lightyear and Lightning McQueen, so they decided to send us to Give Kids the World, a resort for kids with life-threatening illnesses and their families in Kissimee, FL, with passes to the Disney parks and SeaWorld! Make-A-Wish took care of all the planning and treated us like royalty!

Our wish trip began on October 11, and we didn't even have to drive ourselves to the airport. :)

There is so much we could say about this trip, but the pictures will tell the story so much better than we could. We'd like to publicly thank Make-A-Wish Michigan, Give Kids the World, and all those who contributed toward this fantastic experience!

Photo album

October 11, 2014

Last week we received the final conclusion of SD's mysteriously low counts: they're not sure. The bone marrow tests came back with no trace of Leukemia, praise the Lord! SD had some additional blood tests done to ensure (as well as they can) that the chemo medicines are being metabolized, and to check for kidney problems. Both of those tests came back great, too: the chemo is having an effect, and there's no signs of kidney issues. We're thankful for these test results, and for now the conclusion is that SD's bone marrow has just been "tired out" after (almost) three years of chemotherapy.

SD went for a week or so without chemo, and his counts have fully recovered. He's now back to an almost-full dose, and his last check (from Wednesday) still looks great!

September 23, 2014

Today we were at clinic nearly as long as we were on the 12th! Most of the time was just waiting, waiting, waiting.

After SD was accessed this morning and we went through all the usual questions, a mid-level nurse came to explain more to us what was happening. She said that she knew it was scary to be called down like this, and that she and SD's oncologist did not believe that this was a relapse. However, with his counts inexplicably dropping repeatedly they wanted to be absolutely certain.

The draw was "easy" (last time they had a hard time getting any marrow out because it was so packed with leukocytes). After a few hours of waiting, the mid-level nurse approached us with a thumbs up - the preliminary results (microscope) showed no signs of leukemia. The cellularity (basically, the quality of the bone marrow) was also good. There are further tests to run on it which will take 2-3 days to complete, but so far the news is positive!

Tomorrow the oncologists will discuss some of the possible causes of the diving counts at their meeting. One possibility is that his bone marrow is just tired out after 3 years of chemo. They're also considering some blood conditions. The antibody condition they tested on the 12th has already been ruled out, but there are others which have not been explained to us in detail yet. Right now we are just waiting on more news.

SD will have another count check next Monday. He's been off chemo since last Thursday and will not resume until at least Monday.

September 22, 2014

SD had his counts rechecked this morning. He is still neutropenic, but his hemoglobin has gone up to 8.4 so we were let go before the full results had completed.

Stephen got off the phone with a DeVos nurse a little while ago. She said that SD's ANC was zero and asked us to bring him down for a bone marrow draw first thing in the morning. Stephen said that she didn't sound really concerned, but this is a procedure he hasn't had since the week he was diagnosed, so the request has shaken us (well, his mommy, at least!). This is not the first time his ANC has bottomed out, but the doctors were surprised by the results today and want to check things out.

We'll be traveling to Grand Rapids this evening and will hopefully know more tomorrow.

September 18, 2014

SD's September clinic day on the 12th (Friday) was a bit different from what we have come to expect. To give you an idea, here is a look at what a typical day at clinic looks like:

Check-in, vitals taken, port accessed, physical check-up. Then, if it's the top of a cycle, we wait to be called to the "road trip" to the sedation floor; generally the wait is 1 - 2 hours. If SD is the youngest (and so far he usually is), he gets his spinal tap done before the other kids. We wait for him to wake up after the 5-10 minute procedure. On spinal tap days, he is not allowed to eat or drink since midnight, so we bring food to help him wake up! Then we get wheeled back to our room to wait for the IV chemo. Once the chemo is made, it's a quick push into his line, he's deaccessed, then we leave. All this generally takes 4 - 4.5 hours total.

Last week followed that schedule until the nurse received SD's blood counts. Once again his red counts are dropping. This time they decided to do some extra blood tests and also requested a urinalysis. Because of the initial results of the urinalysis, we had some scary moments as the nurse requested a second sample and tried to explain some possible reasons for such results (both sugar and ketones present, which apparently is Not Good, especially since his blood sugar was low when he came in that morning).

The extra blood test was run to make sure that he doesn't have antibodies attacking his own red blood cells. Praise God, he does not! They said it looks like his bones are making his blood quickly and that his liver is not breaking it down properly. I don't really understand all this, but I know it isn't as serious as the first thing they were worried about. But obviously, no one wants the current problem to continue either. They think his medication called Dapsone may be to blame for the fluctuations in his red counts, so are taking him off it completely. He has been switched back to the IV Pentamadine he used to get, which he'll get once a month (every time he's at clinic). This will lengthen our clinic days a bit since it takes about 1.5 hours to administer, but we are hopeful that it will stabilize this blood issue.

As we were just about to head out the door for the day, a nurse came rushing back to tell us they need a second urine sample and also more blood. SD had already been deaccessed, so he ended up getting a finger prick. Amazingly, both samples tested fine, and we were free to go. After more than seven (sometimes anxious) hours in the hospital today, the level of relief and thankfulness as we walked through the clinic doors was pretty intense!

Passing time at clinic.

Today (the 18th) SD had a count check and all his counts are lower than they were last week. This was a disappointing discovery because we had hoped that the steroids he finished yesterday would help boost them. They considered a blood transfusion, but the hemoglobin was so close to the line that they instead want him to get checked again on Monday. He is also neutropenic (low white cells, meaning little ability to fight infection), so we are in isolation mode.

So. Specific prayer requests this month:

• Stabilized red blood counts/no need for transfusion.
• All counts to rise on their own.
• No illnesses!

As always, we are so thankful for all of you, our praying and supportive family and friends! We love you!

Our Munson nurse Sandy surprised us by bringing a Wii to SD's station today. He was so excited for an opportunity to play Super Mario Galaxy 2. :)

August 13, 2014

As is usually the case when we don't update this blog for months at a time, things have been super here!

To catch up: At clinic in June SD was scheduled for a spinal tap. There was some doubt about whether he could safely be sedated because of heavy congestion and wheezing, but after giving him a breathing treatment the doctor decided to go ahead with it. He did just fine, and has been doing fine ever since!

He enjoyed traveling to Wisconsin for a cousin's wedding in July, where we had the opportunity to meet up with many extended family members we rarely get to see.

Shortly after that trip, he suddenly started opening up to people in a way we haven't seen before. Normally he refuses to talk to people even if he knows them, unless he is very comfortable with them. The week following the wedding, he had a special interview with a couple ladies he had never seen before and talked away! The next day at clinic, he chatted with his new nurse and the Child Life worker. He even agreed to 2 or 3 high-fives from different hospital staff! Until that day, high-fives from SD were unheard of. He has been saying 'please' and 'thank-you' and 'you're welcome', which have also been a struggle for him. It has been amazing and exciting to see him blossom in this way!

We have noticed in the past that he has these periods of blooming shortly preceding an increase in his chemo dosages. Based off of his *excellent* counts at clinic last week, we expect that when his height and weight are recalculated at clinic next month that his dosages will be nudged up then. We are hoping that the advancement in SD's social development we've seen in the past month will survive that increase.

P.S. SD wants to tell everyone he meets that he is 5 now! I'm sure he'd love to share that message with all of you who are praying for him as well. :)

May 23, 2014

When I planned to compose this update I didn't think I'd have much to say. Aside from what we believe to have been a virus that he caught about a month ago (although the possibility of allergies has not been entirely ruled out), SD has been doing great. The virus progressed to the point that we feared another weekend trip to the emergency room, but his pediatrician said that his lungs sounded clear and recommended we just wait it out. He still has a bit of lingering congestion, but sounds much better than he did a few weeks ago.

This morning he woke up cheerful and had plenty of energy. He even talked to one of the nurses as she prepared to access him, which does not often happen! We expected clinic to be the usual 2 - 2 1/2 hour routine we've come to expect, after which we'd meet up with his Aunt Carmel and cousins from out of town for lunch and a trip to the Sleeping Bear Sand Dunes. The last thing I expected to hear was that SD needed blood - but he did.

His primary oncologist was at the TC clinic with us and said that needing a blood transfusion during Maintenance is very unusual. She didn't have an answer as to why his red counts sometimes dip like this, nor how he can appear so healthy when he is that low on blood. But just like last time, even though he was active and perky before the transfusion, he grew more so during and after it.

The transfusion prevented us from going to the Dunes, but SD had lots of visitors to keep him company today! He was allowed to have both his Daddy and me, his Grandma Cleary and Aunt Carmel, and all four visiting cousins in his room. He seemed to really enjoy this new clinic experience. :)

His other counts were high enough that his oncologist said we didn't need to have them checked before his next appointment unless we were worried about how he's doing.

Even though this appointment started in disappointment, we did receive some exciting news on a matter we have always been in some doubt about. SD's oncologist and one of the nurses studied SD's chart to find out when he is scheduled to finish up with treatment, and concluded that he should be done in February! This is the earliest that we dared hope for, as the answer to this question changed depending on who we asked. Now instead of saying that he has about a year or a little more left of treatment, we can report that he has *only 9 months* remaining! It's starting to feel like an end is in sight!

February 23, 2014

SD's counts looked so much better last Thursday! By now he is completely over his illness and back on his oral chemo, although at a slightly lowered dose. He'll get checked again this coming Thursday.

Thank you to all who have prayed for him and who send kind words of support! We love you!

He finally had a chance to get a good dose of fresh air yesterday at Knee-High Naturalists!

February 14, 2014

As many of you know, SD went to the ER last Saturday because of a fever. His only other symptom was a cough which, though infrequent, didn't sound very good. He remained cheerful and active, and his appetite wasn't affected, so the presence of a fever was surprising. At the ER he received an antibiotic and was then discharged with instructions to return for more antibiotics if his fever hung on through the next day. His fever has not returned, but his cough has been gradually getting worse since then.

At clinic today, nearly one week after his ER visit, the oncologist decided to call it bronchitis and prescribed a 6 day antibiotic. While on it he may not take antacids, but he will be taking steroids; he has always taken Prevacid or similar medication with steroids to prevent acid reflux, so we're a little nervous about how a full pulse without it will affect him. In the past month or two, he's had more issues with what seems to be acid reflux than he's had in the past.

He has been off his oral chemo since last Saturday and his counts were really low again today, so he won't start again until at least Thursday when he gets his counts rechecked. He did receive vincristine in clinic today and has started his steroid pulse, so his treatment isn't at a complete halt right now.

Our prayer requests for this update: that SD's counts will go up quickly (including his hemoglobin, which has been in the 7's since at least last Saturday), that he'll get over his cough soon, and that his body will tolerate the steroids without antacids.

Apart from this recent hitch, SD has been doing wonderfully since our last update. He has stayed healthy, has been getting more active, and has been acting more like one would expect a little kid to act. His sense of humor is returning, which is one of the greatest blessings we've recently experienced. :)

Since we don't have any pictures from clinic today, here are some since our last update which show some of the fun he's been able to enjoy over the past few months:

SD had fun playing in the leaves as well as playing photographer last fall.

SD finally decided he felt strong enough to try pedaling on his own. We're really proud of him over this one!

The evening before the two year anniversary of his diagnosis he found one of his old chemo caps. We're so thankful that he doesn't need these anymore and for the happy face beneath it!

Having fun in a room we'd never been in during a December clinic. There is just enough room for him to hide between the window and wall, and hide he did. It took quite a while for nurse Mary to find him. It was also a great perch for watching workers go down a manhole and come up much dirtier than they were before!

Working hard clearing Grandma Snell's deck with his new shovel.

The kids seemed to enjoy this area the most out of the whole water park at the Kalahari, where we stayed while Stephen attended CodeMash (a big conference for programmers).

October 7, 2013

Today was a Grand Rapids clinic day, and the appointment went well. SD has had a slight cold for close to a week, so we weren't sure if his counts were going to be lowered because of that, but they were about average for him.

Speaking of counts, SD's have been suppressed for quite a while now, which got us to thinking about the amount of oral chemo he has been getting. We like to keep close track of his medication intake, which made determining when he had last taken a full dose of his medication easy. Realizing that it had been five months since his last full dose, Stephen decided to study all the records we've kept since Maintenance began in August 2012. After creating a bar chart and pie charts, we realized that since beginning Maintenance, SD has missed the equivalent of 25% of his oral chemo; in just the past five months, he's missed the equivalent of 48%!

Obviously, in spite of the good results of the metabolites testing this raised concerns for us, so we decided to point this out to Dr. Kurt (SD's main oncologist). Stephen gave his presentation today, and both she and Nurse Practitioner Mary agreed that we need to be more aggressive about getting his dosage levels up, hopefully to at least 80%. Ideally, they'd like him at 100%, but some just can't handle that. They came up with a new game plan for boosting his dosage levels; please pray that the best all-around plan can be figured out as soon as possible! This is a balancing act with many considerations. We have really enjoyed seeing SD have more energy and be more cheerful the last few months, and it would be great if the doctors can find a plan with enough chemo to kill the cancer but not so much that his personality is disrupted.

When we asked if the past five months of missing nearly half his chemo was something to be concerned about, Dr. Kurt said that she didn't think so. She said there is plenty of time for him to catch up. Both she and NP Mary were very impressed with and appreciative of Stephen's work; Dr. Kurt even jokingly asked if he'd be willing to do that for all their other patients. :)

After SD's appointment, we got to spend a few extra hours with Grandpa Cleary, who has spent the past week with us. We went out for a quick lunch, followed by a trip to the zoo!

We parted ways after that; I think it's safe to say that Grandpa's presence is missed by all already!

September 1, 2013

When SD had his counts checked on August 22 we were a bit surprised that they were almost exactly the same (some slightly lower) as they were two weeks previously. He'd been on half doses for those two weeks, so we were a little anxious during the week leading up to his clinic visit last Friday (August 30).

During that week, SD remained healthy, and on clinic day his counts made up for any lack the week before - they haven't been this high in a long time! His dose of methotrexate was slightly increased for now, but he is to remain on a half dose of 6-MP at least until his next count check in two weeks.

The results of the metabolites testing came back good, meaning that even while on the lower doses, enough 6-MP is making it to SD's system to stay within the goal range for a good outcome. From what I understand, dosages are determined by height and weight and the ideal is for him to take the full dose as often as his system can handle it; since I can't even remember the last time he was able to take a full dose, we are praising God that less appears to be enough.

We are in the midst of a steroid pulse (through Wednesday morning); extra prayers for grace are always appreciated during this time. :)

Here are some pictures taken since our last update; we took a trip to Wisconsin and the U.P., belatedly celebrated a birthday, and took a trip to Mackinac Island - fun and busy times!