SD's Story: 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!