Thursday, May 10, 2018

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.

Tuesday, February 2, 2016

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!

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!

Monday, February 2, 2015

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!



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."

Thursday, December 18, 2014

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. :)

Monday, November 3, 2014

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!

Saturday, October 11, 2014

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!

Tuesday, September 23, 2014

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.