Monday, April 11, 2016

Just pictures.


Catching up (Another relapse scare)

[I'm sorely behind on documenting Watts' story and also on updating any readers... I'll cut to the chase and say that Watts is doing beautifully and he is still cancer-free.]

At the end of February, Watts began complaining about leg pain. On February 29th, the pain intensified and, by the end of the day, Watts had stopped walking on his right leg altogether and was screaming in pain. Initially, we hoped that it was simply growing pains, but (because Watts' pain tolerance is so much higher than most kids his age) we worried that the pain was too severe for it to be something "normal". We knew also that it could mean a relapse of his cancer. We emailed his team and they responded immediately that we should come in first thing in the morning and to bring him in NPO after midnight.

The team jumped into action when we got there and we came up with a the plan for the morning. His lead doctor told us that when a post-leukemia patient comes in with leg pain, he is considered to have relapsed until proven otherwise. We needed to run labs, do xrays, and then we needed to consider sedating him to do a bone marrow aspiration.

Labs came back normal (which still didn't rule out a relapse) and we moved onto the xrays. The hope was that the xrays would show some sort of injury that could account for the pain. The xrays showed nothing abnormal so we made the decision, upon the recommendation by his team, to sedate him for a bone marrow aspiration. Because the pain was so severe, the team believed that if he had relapsed, there would be evidence of it in the bone marrow near his right hip.

We waited for a sedation suite to come available and Watts had to get an IV. In his three years of extensive medical treatment, Watts has only had to get an IV two times, thanks to his hickman catheter and later on his portacath. The first IV was put in in the ER when he first got sick (it took many, many attempts because he was so dehydrated) and the second IV was put in in the middle of the night when his hickman line broke (after 5 million tries a picu nurse had to be called to our room to finally get the IV in). I was a little nervous about how this IV would go and how Watts would respond, but, after a few attempts, the IV was in. Watts did beautifully.

Watts screamed for us as he was put to sleep but he quieted quickly and the sedation went well.

A doctor on Watts' team was down in the lab when his results were sent in and looked at the slide under a microscope, so we found out the preliminary results very quickly: Watts' bone marrow showed no sign of relapse! We were overwhelmed, thankful, very sobered by the fact that we were getting such good news when so many more around us were not.

Since all of the tests came back with no sign of a leukemia relapse, the team has hypothesized that Watts' body created too many antibodies to fight off prior stomach bug (that he had a week before the leg pain started), and that the antibodies began to attack his leg joints. I can't remember the medical term for this but it is apparently not very common in children. After a few weeks of needing to be carried more than usual and being a little more grumpy, Watts is back to his normal self.

We are so very thankful and reminded, yet again, that each day is a precious gift.

Through the love of God our Savior, All will be well
Free and changeless is His favor, All is well
Precious is the blood that healed us
Perfect is the grace that sealed us
Strong the hand stretched forth to shield us
All must be well

Though we pass through tribulation, All will be well
Ours is such a full salvation, All is well
Happy still in God confiding
Fruitful if in Christ abiding
Steadfast through the Spirit's guiding
All must be well

We expect a bright tomorrow; All will be well
Faith can sing through days of sorrow, All is well
On our Father's love relying
Jesus every need supplying
Yes in living or in dying
All must be well
Mary Bowly Peters (1847) & Matthew Smith (2007)

Monday, February 8, 2016

A little update on Warrior-Boy, Watts. And me.

We just got back from labs at Brenner. All is well, and Watts remains cancer-free (!!).

Watts cried for the first time today when they pricked his finger for labs. It caught me off-guard because Watts is usually the one assuring me that "it just tickles, Mama" and helping them squeeze his finger and talking about "Mr Red". The tears represent our progress, I think, and speak to the fact that labs are infrequent and Watts' memory of his hospital days are already faint ones. This is a very good thing. The nurse and I still both got choked up with him as he cried.

Overall, Watts' labs are where they should be. His lymphocytes are slowly recovering and should be on the low-end of normal within a month. At that point, we will restart the process of getting Watts re-immunized with his local pediatrician. The chemo wiped his whole immune system clean when it was fighting off the leukemia cells.

Other appointment details:
  • Watts' weight is a little below 50% and his height is inching its way past 10%. His height and his weight have been suppressed over the last couple of years due to the chemo but he seems to be slowly catch back up. 
  • He has been having some minor intestinal issues. We are going to be monitoring this at home this month and if the problem persists, he will have some GI testing done next month.  
  • He started on allergy medication due to having a runny nose and cough for the past 5 months. His problem with allergies, his doctor said, is most likely a side-effect of the two years of having a compromised immune system. 
  • Developmentally, Watts seems to be right on track with where he should be. He speaks in full sentences, knows his colors, some of his letters, and last week, he started writing his name from memory. Two years ago, Watts was meeting with a physical therapist, occupational therapist, speech therapist, and being followed by a child life specialist. Today, we are shocked and unbelievably thankful to say that he seems to be a fairly "typical" three year old.  
  • [Side-effects from the chemo (ranging from minor learning disabilities to eye problems to heart problems to secondary cancers) are all things that we will be monitoring for most of his life.] 

Our life looks fairly typical these days. And what a gift that is! As Watts' immune system has been recovering over the last few months, we have slowly started being able to do more normal things. We switched him from the small Infant nursery (we had him in there for about a year because of there was less risk of germ-exposure with non-mobile babies) to the 2-4 year old Sunday School class at church. We have gone to the Chick-fil-a play place, to an indoor jumping park, to the movie theater, to the children's museum, and a list of other places that have been off-limits since Watts started treatment. Since we kept Piper out of school this year, it has been super sweet to see their brother-sister relationship blossom and for them to have extended, non-medicated times of playing together. Both Watts and Piper seem to be thriving and Michael and I are deeply grateful.


The journey for myself has been a bit murkier over the last several months. It is difficult to write that (hence the lack of posts over the last six months) because it can feel horribly ungrateful and insensitive to other cancer families. But it is also my truth and I want to be honest as I write our story. The post-cancer treatment stage has been a confusing one for me. While Watts was in active treatment, we had a battle plan and I knew exactly what I had to do to try and get my son well. It was a hard and dark season, but it was also a very intentional time and I knew what I had to do each day. While the end-of-treatment was much anticipated and brought great joy and relief, it also felt a bit like I was shoved off a cancer-fighting battleship and told to swim the rest of the way to shore with my kids on my back. But I couldn't quite remember how to swim. Or where the shore was. [This is a terrible analogy but the first one that came to my mind.]

It is an awful lonesome thing to finish cancer treatment for your son and to simply have to wait to see if the treatment will work. 

It is an awful lonesome thing for your son's team to tell you that they've done everything they can do and that now you just have to go home and wait. 

It is an awful lonesome thing to walk (what feels like) between two worlds... To be not fully in the cancer world any longer, thank goodness, but to also struggle to know how to re-engage with the non-cancer world. [And to live in the knowledge that we might have to step back into the cancer world at any moment.] 

It is an awful lonesome thing to struggle to remember that God is with me in the daylight and "normal days" too. I have so desperately needed Him over the last couple of years and have relied on Him so immensely during our dark cancer season, but somewhere along the way, I forgot how to recognize Him when the sun is shining and life is busy and the darkness seem to be primarily going on in my heart. [I'm sure I have given Him quite the laugh as I've looked for Him and waited for Him. I am His beloved daughter and He is with me always and always. It is just that the darkness strips all other distractions away till I am face-to-face with the truth. I am loved and I am His.]

I've never been very good at waiting. I've never been very good at knowing what to do with fear. Stripped of Watts' battle plan and launched back into the sea, I have had to come face-to-face again with my fears of losing my son and my cancer-mama PTSD (it is a real thing, y'all) and had to wrestle through what it looks like to not wait (and have my life on hold till Watts is considered cured in 4 1/2 years) but to instead learn how to LIVE. I have made much progress but still have a ways to go.

So, I just wanted to say that I'm still here, despite the blog writing hiatus, but I'm relearning how to swim. Thank you for your prayers for our family. We have been sustained by them.
Site Design By Designer Blogs