Steroid Pumpkin

I know, it’s a funny title for the post. But, the pumpkin above was carved at 4 a.m. this morning.

As we’ve often mentionted, the steroids make it hard (or impossible) for Gage to sleep. He woke up this morning a little before 4 a.m. and in the process, woke us up too. I stayed in bed and tried to sleep through his requests, comments, etc. Blake just gave up and went downstairs. Then, he remembered that he needed to bring a partially carved pumpkin to school for Gage today. So, he cut the top off and started scooping out the goo. And, of course, Gage got curious what he was doing downstairs, “Daddy, what are you doing?” Blake: “Getting the pumpkin ready so we can finish carving it at school today.” Gage: “Can I help?”

So, at 4 a.m. they were downstairs scooping out pumpkin goo, sketching possible pumpkin faces and etching the best design on the front of the pumpkin. Crazy.

And, it’s also Avery’s birthday today…

I celebrated with her at school today, which is always a treat.  And, as you can guess, it’s still a crazy week here…steroids, birthdays, Haloween coming…we’re just hanging on for the ride!

RH

Birthday Boy

Today is Gage’s 6th birthday!

For those that have been following along since last year, you probably remember that this time last year we were in the middle of a two-week hospital stay that included Gage’s birthday, Avery’s birthday and Halloween. So, all day today I’ve been comparing my mental images of last year vs. this year.

And, I think I expected that when this day came, I would compare those images and feel overwhelmingly thankful to be home together as family and to see Gage doing so much better. And, I do feel thankful. But, I also feel so sad.

We spent the entire day yesterday at the pediatric cancer clinic at Children’s. Gage had chemo in his port, a breathing treatment and began a week of steroids…in addition to his weekly Monday chemo, his nightly chemo and his additional medicines to deal with nausea, etc. By this afternoon, you could easily see the effects of the hard day yesterday, both physically and emotionally. He looks tired…and he is. He is also easily frustrated and angry, which is not easy on those around him, especially his sisters. To soothe Avery’s hurt feelings from one of his many outbursts today, I reminded her yet again that this is a steroid week for him and that the medicines are clearly affecting how he is acting.

And so, I am sad. I’m sad to see my little boy on his 6th birthday loaded full of chemotherapy, tired and emotional from its effects. I want him to have a birthday like all kids should have: fun, innocent, exciting and free from the realities that await us all later in life. That was not his day today, so I grieve yet another loss that is part of this journey.

I consider that Gage was four when he was diagnosed, five last year in the hospital, six this year…and then we still have seven and eight to go before we hopefully close this chapter of his cancer treatment. And still, at every age, he will bear the physical scars and risks resulting from this long, toxic treatment.

So, to me today, ’six’ at times just seemed like a number to check off on the way to ‘eight.’ I think I compared the day less to last year and more to wear I wish were could be…the dream of a 6-yr-old Gage who could have just been a regular kid without cancer.

I don’t let myself think those thoughts very often because they are so difficult, but I’m also learning that anniversaries, special dates, etc. have a way of breaking through the defense mechanisms we use to cope each day. Today, I felt defenseless.

And, it’s not the first time and certainly not the last. So, please continue to pray for our family as we walk this road of Gage’s cancer. It’s a long road, and I’m always comforted by the prayers and support you give to us.

Galatians 6:2 encourages us to “bear one another’s burdens.” Thank you for doing that for us.

RH

A Milestone

Gage lost his first tooth at school on Friday! Milestones like these are always fun, but they are especially sweet considering how much ‘normal’ we’ve missed in the last year or so. I know I appreciate the simple joy of the first lost tooth (and the first visit by the tooth fairy!) more than I did before. So, I grabbed my camera when school was out on Friday and took a few pictures…

Gage with his teacher, Miss Hoek

Also, some of you ask me from time to time about the Childlife Specialist that was hired for the inpatient cancer floor at Children’s through the Team Holmes fund raising efforts. When we spent so much time in the hospital last fall, we were always burdened by the overwhelming needs of those around us.

We watched as single moms could only visit their kids at Children’s, but then had to return to work and other children at home. As Gage spent every hour with Blake or I there to comfort, play or rest with him, other children were alone in their rooms. As Gage received gifts, balloons and notes too numerous to count, other kids had no ‘extras’ to compensate for the challenges they were facing. As many of you lovingly cared for Avery, Ellie & Wesley in our home and yours, other siblings were either forced to spend long hours at the hospital or to be cared for in much lesser circumstances.

So, what led us to raise money for a Childlife Specialist devoted exclusively to the inpatient cancer floor? The reality that the needs of the kids and their families are so immense and constant.

The doctors and nurses play vital roles, of course, in caring physically for the children. And the children trust them and feel a great sense of connection to them. Still, their role is to treat the children primarily from a physical perspective. A Childlife Specialist can do so much to address  the needs of the kids and families from a broader perspective. If you click on “How can I help” above, you can read a brief description. Still, without actually living on the floor for a while, it’s hard to fully understand the incredible role this person plays. I’m sure that Children’s could employ multiple people full-time in this role, and, still, the needs would be never-ending.

To give you a small idea of what Childlife means to kids and their families, I thought I’d share with you how the Childlife department created Fair Day on Friday for the kids on the cancer floor. (Not only will most of the kids on the floor miss the fair this year, they can’t even leave the 10th floor at the hospital because of their weakened immune systems.) Special days like these can’t happen without the support of Childlife…

From our friend Laurren’s blog (she has had bone cancer followed by lung cancer):

Laurren has had a busy week here on the 10th floor as she got her cast off Wednesday and today she is meeting with the cardiologist to get another echo scan on her heart and hopefully get off her heart medication. The Child Life Department is also having a party today at 6pm for all the cancer patients, their family and friends. The special event is bringing ‘Big Tex’ from the State Fair of Texas to the hospital just for the cancer patients with lots of games, state fair food and prizes for the kids. Laurren was honored to be able to help decorate for the event and thankfully she feels good enough to help out.

From our friend Jordan’s blog (she has leukemia, like Gage, but is in earlier & more difficult stages of treatment):

We are on the 10^th floor!!! Today has been pretty good. Jordan has been engaging with us a little more each hour. They decided that we could move back to the floor from ICU ”sometime tonight” and so I promptly begged them to let Jordan go the State Fair party being held on the 10^th floor tonight. I knew that it would really help her spirits and probably get her a little more active. They finally decided that we could play hooky from ICU for a little while and go to the party since they were going to transfer her anyway. I think they all expected us to only stay 10-15 minutes but my thinking was that surely if we stayed down here long enough, they would find a room for Jordan. I was right! Jordan had a good time at the party and even painted a pumpkin!! I am putting up a picture of her painting- notice the J she painted- we didn’t realize that she was putting that on there until she was done. We had corny dogs, hamburgers, funnel cakes, pretzels and more! They had several different games for the kids to play and lots of prizes. This was the first of quarterly parties they are going to give for the 10^th floor kids. They did a great job!

Today was one of our rare Mondays with no clinic appointment. Ever since the middle of last week, Gage has felt good and enjoyed himself at school. Of course, next Monday we go back to start another week of steroids and intensified medicines. Still, I’m learning more and more to enjoy the blessings of each day and to not let the worry of tomorrow (or next week) rob me of joy today.

Thanks for checking in and for your continued support & prayers.

RH

The State Fair of Texas

You might not think much of telling someone, “Yes, we’re going to the fair today. Can’t wait!” That is, until you are at Children’s surrounded by kids and parents at the pediatric cancer clinic who are nowhere near being able to enjoy a day at the fair.

As you can guess, our Monday started with a clinic visit…and ended with a long-awaited trip to the Texas state fair. And, there is nothing like starting your day at Children’s to really appreciate your time at the fair…hot weather, long lines, big crowds and all. The kids rode tons of rides, played games on the midway and enjoyed the famous corn dogs and some cotton candy. Yum!

Here are a few pics from the day:

Blake and I were at Children’s for a meeting last week. While there, we learned that because of the new child-life specialist hired solely for the inpatient cancer floor (that many of you helped fund through gifts to Team Holmes), the kids who are in the hospital right now will get to have a fair day of their own! So, for those who can’t go and have the fun we had today…the fun will come to them through the efforts of the child life team at Children’s. Since we spent almost our entire fall in the hospital last year, I know how much those celebrations mean.  Thanks for those of you who have given to make it possible!

As for our clinic visit, Gage’s counts are right where the doctors want them, so we just continue our same daily chemo doses. Please continue to pray that he would be protected from infection and sickness this fall. (And, don’t worry, we used TONS of Purell at the fair!)

As always, thanks!

RH

Reunited

Well, I didn’t have a moment to write about it while it was happening, but we just endured a few days of a terrible stomach bug at our house. Blake, Avery & Ellie were all taken down, but thankfully Gage, Wesley and I escaped unscathed.

Still, because we wanted to make sure Gage didn’t get the bug (and then, quite possibly, a ticket to check into Children’s), he basically moved out for a couple nights. I know he had a fun several days with his grandparents & cousins, but we were all definitely ready to be reunited today. This morning, Ellie’s first words to me were, “Mommy? Is Gage coming home today?” “Yes,” I said, to which she quickly replied, “Good.”

Yes, good indeed. Gage is back home, no one else got sick, and those who did get sick now feel better. Please pray for Gage as the cold & flu season approaches that he would be protected from all the germs he is surrounded by both in our family and at school…not to mention just out & about.

Thanks for praying and for checking in!

RH