The Unexpected

As we continue to learn, life is full of the unexpected…both the good and bad. And, that is the word that kept coming to mind today as I (Rebecca) thought about what to say on tonight’s update. So, we’ll just start from the beginning…

* Blake and I were able to go to Nashville this weekend with four other couples from our church. This is the first time we’ve left town together, without kids, since Gage was diagnosed in June. And, these were the friends who sat on the floor outside our hospital room around the clock those first 5 days we spent at Children’s…and have loved us so well since then in countless ways. So, it was a great treat to actually be able to all leave town together. The catalyst for the trip was a Christmas party “gone wrong” where everyone decided that we should all run the Nashville Country Music Half Marathon together…and signed up on-line for the race before we left the party! I didn’t commit then, but waited until the beginning of April to decide that I just couldn’t stand to be on the sidelines…so I signed up too. On Saturday, eight of the ten of us ran in the race and had a great time! I swallowed down tears several times on the race course as I considered how far we’ve come, that we had the freedom to leave town, how well Gage is doing, etc. Blake and I wore our purple, race-day Team in Training jerseys (the charity that benefits the Leukemia & Lymphoma Society) and basked in the cheers of the TNT support staff all along the course as they cheered for us by name.

* After the race, we were able to meet some new friends who we’ve previously only communicated with via the Internet. Jana and Michael Kelley also have a young son, Joshua, who was diagnosed with leukemia (about 18 months ago). I marvel at the technology that has allowed us to develop long-distance friends who understand so much about the journey we’re on without much explanation from us. It was a sweet time for Blake and I to be able to visit with them in person. And, they also ran the race on Saturday… (Their blog is http://joshuamichaelkelley.blogspot.com/ if you want to get to know them too!)

* We woke up on Sunday morning and received a call from home that Gage wasn’t feeling well, hadn’t slept much that night and had been sick that morning. As Blake said, it was like having a cold glass of water thrown on your face. Reality was back. So, we packed up quickly, arrived at the airport early and got home as fast as we could.

* Today I took Gage to the clinic (above in the waiting room). The doctor discovered an ear infection and started him on antibiotics. Because his body is fighting that infection, his ANC (a measure of white blood cells that provide immunity) is 198, extremely low. Not surprisingly, he doesn’t feel great. So, he will need to stay away from crowds and “germy” places until his counts rebound, as a fever would admit him directly to Children’s. This is the first time we’ve done this part of maintenance (low counts, fear of fever, anxiety about having to be admitted again), but I’m sure not the last.

* As we were at clinic, Gage’s sweet friend Laurren was there as well for scans that mark the end of her treatment. She and her family prayed and hoped for scans that were completely clear of any sign of cancer, but that is not what they got. There is one unclear spot on her lung that they will continue to watch, hoping that it is not new cancer. Please take a moment to pray for them as I know they will need strength, comfort and wisdom that can only come from the Lord in the days ahead. (Their blog: http://www.caringbridge.org/visit/laurrensmith)

* After bath time tonight, Blake brushed Gage’s hair for the first time since it all fell out from the chemo. I know he teared up as he considered all that was bound up in that simple moment.

So, I feel like the last few days have been full of unexpected moments…sweet, fun, challenging, sad and more.

And, please know that one “unexpected” that we would love to add to the list is each of you who choose to come on Saturday, June 21st as we mark the one-year anniversary of Gage’s diagnosis. (See our post on April 16th for the details) It really is a “more the merrier” event…so please pass the invitation along to others you know. And, don’t worry that we’ll think you’re “blog stalking” us if you come and we don’t already know you! I know I can’t wait to see friends (old and new!) that night as we make a difference in the lives of many families whose children are also fighting cancer.

Thanks for your continued support and prayers for Gage and our family. And, please pray that Gage would re-bound quickly and be protected during this time of low immunity.

RH

Sweet Days

Ok…the weekend update is a bit late…but here it is anyway!

We ended the week relatively unscathed from the steroids, thankfully. Aside from the challenging clinic day that started the week, it was probably Gage’s smoothest week yet on steroids. On Friday, his school hosted their annual Spring Olympics. We had been unsure if he would be able to participate, given the difficulty we anticipated with his week, but he was able to join his classmates in the fun. To anyone watching, you would have never guessed the challenges he is facing. And, I’m sure no parent took greater joy in watching their child that day…even though we can still see the remnants of the chemo side effects in his physical abilities. Thankfully, he had a great time and was clearly proud of his efforts, as he should be.

Then, on Saturday, Avery’s school had their annual Spring Carnival. The kids all had a great time…especially flying through the sky on the trampoline. I did have to explain Gage’s port to the man in charge and double-check that he would be fine with the harness on (to the best of my judgment, anyway)…and it all seemed to be fine. So, they all jumped…and did tons of other activities and games. Then, we all collapsed when we got home!

Thanks for your prayers for us last week. I know they made a difference, and we are so thankful.

RH

Mark Your Calendar…

Although it may be a bit early to plan for a Saturday night in June, please do!

Blake has been working hard to plan a big night for family and friends (old and new!) to join us as we mark the one year anniversary of Gage’s leukemia diagnosis. I told him most people would just end the bittersweet day by staying home, ordering a pizza, playing with the kids..and maybe having one beer too many before calling it a day.

Not Blake. This is his way of fighting back.

So, if you can join us, every penny of your $50 will go straight to Children’s to help other families whose children are also in this fight against cancer…and most with much less support and resources than we have. And whether you’re a great friend or have just been following along via the blog, we’d love for you to join us as we mark the one-year milestone and make a difference in the lives of many, many families who have children fighting cancer.

Nothing would feel better that night than to see all of you and raise a ton of money for Children’s!

RH

Still a rookie

It’s funny to say, but at times I feel like I get used to Gage having leukemia. Yes, I think about it every time I look at him, I worry often that I’ll forget his medicine, we plan every night’s dinner around his medicine time, I quickly move away from anyone who coughs or sneezes near us…you get the idea. But, compared to what life felt like when Gage was diagnosed in June (and the 6 months that followed), coping with his leukemia is certainly easier…and even the hard parts have gotten more routine. So, I sometimes feel like a ‘veteran’ of having a child with leukemia.

Not today.

Today, Gage had a spinal tap, and Children’s has changed way they do the anesthesia for the procedure. Before, Gage was consciously sedated, which was awful to watch as they drew spinal fluid from his back and then injected chemotherapy back into the same spot…as his eyes were open and he occasionally talked. Still, we have done it more than a dozen times, and I am now used to how it goes. I knew they had changed the procedure, but I did not anticipate how different it would feel for Gage and us.

First, the new anesthesiologist reviewed all the possible complications and the fact that we can’t be in the room…in front of Gage. And, of course, Gage becomes upset, sad and fearful. Then, they push the anesthesia through his port, and he goes limp in Blake’s arms before they have even given him the full dose. And, we have to lay him down on the table and walk out of the room. In the midst of all this, we have a couple mis-communications with the anesthesiologist that cause stress for us and Gage. I know he could have certainly said and done a few things differently, but I also knew that we were all much more emotional than usual, as the lack of routine left us without the usual defenses we have in that hard environment. And, as Gage has felt so much better these last few weeks, it’s heartbreaking to be reminded yet again that he is still very sick and needs very toxic medicine to fight the cancer. It’s like it was new all over again.

So, as I sat beside him for 30 minutes waiting for him to come out of the anesthesia, I decided that I’m definitely still a rookie at this…and always will be. I’m a rookie at seeing my child suffer, at being thrown off course by unexpected challenges, at being able to catch up emotionally when things are moving too fast…and at knowing how a day is going to go before I live it. I was disappointed to leave clinic today feeling like the day had been so hard, even this far into Gage’s treatment, and feeling like I didn’t have the opportunity to love the people around me as I had hoped. Still, I was reminded that God is using today (yes, even today) to make me into the person He wants me to be, and I must rest in His plans.

Thanks so much for your prayers today. We certainly needed each one.

RH

Famous

Blake and I took Gage, Ellie and Wesley to lunch on Friday. As we left the restaurant, we heard Gage say, “Look I’m in the newspaper! We’re famous again!” Sure enough, he spotted his picture on the front page of one of our neighborhood newspapers (evidenced by my camera phone pic above!). The picture was from our fun outing to High School Musical on Ice that was sponsored by a popular local charity. And, pictures of Gage (and Laurren) from the Children’s Cancer Fund luncheon and style show are in our other neighborhood paper as well this week. So, yes, I guess we are famous again.

I do have to say, though, that it’s a bit funny to be ‘famous’ as the family with the kid with cancer. Many people in our community know our family now because of Gage’s leukemia, especially because Blake grew up here and his entire family still lives here. Since we are out and about more these days, we are often the recipients of kind words, caring questions and reminders of prayers offered daily for our family…and just as often, sweet smiles as people avoid direct comments and conversations when Gage is present. Still, he certainly realizes that all the attention is related to his health. Today, we saw a friend Gage doesn’t know as well who offered kind words, and after the conversation, Gage said “How does he know I have cancer?” There was certainly no mention of ‘cancer’ in our friend’s words, but Gage still understood the fullness of the exchange. Blake and I just smiled at his question and reminded him how glad we are that people know because they love our family and pray.

As for prayers, please do pray for us as we return to clinic on Monday for a spinal tap, chemo through his port and to start a week of steroids, in addition to his nightly chemo and other drugs for reflux, nausea, etc. This is the hardest week of his treatment, and we repeat it every twelve weeks. It’s so great to see Gage looking so good and enjoying his days more…and very hard not to be anxious, sad and apprehensive that a hard week await him and us as we continue this battle against the leukemia. It’s still a reality that is hard to accept.

Still, this is where the Lord has placed us, and He is certainly drawing us closer to him through this time. So, please also pray that as we mark another Monday clinic off our calendar, we would allow the Lord to use us at Children’s to make Him more famous. As much as clinic days are hard for our family, the are also the days the Lord has given us to interact with the other hurting families in the clinic…please pray that we make the most of it.

Psalm 145:3-4

Great is the LORD and most worthy of praise;
his greatness no one can fathom.

One generation will commend your works to another;
they will tell of your mighty acts.

RH

Mr. Army Man

Today, Gage and the girls met a real, live Army Man. When Gage opened the door, he was absolutely speechless. Then, he ran away. Of course, he returned about 30 seconds later dressed in matching camo…and the fun began.

The kids played with him in the backyard on the swings, chased him in the front yard, beat him with foam bats and a light saber, laughed as he threw them in the air…and finally calmed down and shared a popsicle with him. Throughout, I could hear Ellie’s sweet voice vying for attention, “Mr. Army Man? Mr. Army Man will you chase me?” Avery was confident she could take him on, and even resorted to trying to throw a scooter at him once it became clear he was going to be much harder to take down than her younger siblings. I did have to remind her that although the Army Man is tough, he’s not indestructible…so we probably shouldn’t throw things at him! Gage was completely in awe of the Army Man…in full uniform…at his house…to visit him!

All in all, it was a visit I think I’ll always remember….another sweet, magical moment that only lives in these hard days. And, it was another great reminder of the joy that you can give others with a bit of creativity and time. Enjoy the pics…and thanks Mr. Army Man!

RH

Looking good!

Today, I (Rebecca) am typing from a laptop while I sit in the front yard. It’s a beautiful day, and all four kids are outside with me, playing with friends and neighbors. This moment is like many in our days right now: if you drove down the street, you would have no idea that one of our kids is fighting for his life against leukemia. You certainly couldn’t tell from looking.

And, when I have Gage with me these days running errands, going to the park, etc., people can’t tell then either that he’s fighting cancer. It is such a contrast from the winter months when he was completely bald…drawing constant stares and comments. Now, he looks great, he is all smiles and he has plenty of energy. Still, what others see is selective. You don’t see him wake up every morning with the words, “My stomach hurts.” You don’t see him stop his playing to come whisper in my ear that his legs hurt. And, you don’t hear his last words each night in bed…that his stomach hurts yet again.

And, you may think he looks totally healthy right now, but I see the steps still slowed by chemotherapy, legs that can’t climb stairs easily at the end of the day, skin that is paler than it should be after a day of extra medicine, sleep that is disrupted by steroids, and more. Also, I know that he has a spinal tap scheduled for next Monday (the 14th), and that he battles the side effect of his treatment daily. And, I also still fight fear and worry about a multitude of things: relapse, infection, kindergarten, making friends, resiliency on the playground, long-term physical side effects and risks that may not emerge for years, etc.

As a family, we are now learning the endurance we’ll need for the next several years as we continue the schedule of one hard week followed by three easier weeks, but still with chemo daily…and then back to the hard week again.

Still, I’m so thankful for how well Gage and the rest of our family are doing right now. I know from friends we’ve made at Children’s that not everyone is enjoying the luxury and simplicity of an afternoon in the front yard today. And, it’s a great reminder to me that I’m daily surrounded by people bearing heavy, yet invisible, burdens. So, even when you see Gage and he looks great…please continue to pray for our journey and his complete healing. The road ahead is long. Still, we know our God is with us each day…

Isaiah 40:28

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.

I take comfort in the supreme endurance of our creator as we walk this road…and His deep, lasting love for us. Thanks so much for your continued support.

RH

One last funny pic…vintage Ellie with the mis-matched shoes!