The Glass Half Full

Quick update…ANC still in the 30s, just waiting…Blake has a terrible stomach bug that feels like the flu…I’m flying solo with Gage at the hospital, and Leigh and my parents have the girls at home. We’re all certainly ready for the madness to wind down. Please pray that Blake gets well soon and no one catches it…and that Gage can come home!

On a lighter note, I had to share something Gage said today. As only my sweet Gage could, he looked at me in the playroom at Children’s and said, “I’ve never had a Gage and Mommy Halloween before. I like Halloween at Children’s.” And a bit later, “I think this is the best Halloween ever.”

Hard to complain when he chooses to be so positive.

RH

Running with Patience

Blake and I (Rebecca) still don’t have any news on Gage’s counts, because they only draw blood for them every 24 hours. So, hopefully we’ll have better news in the morning. The good news is that there is no bacterial growth in his blood culture (meaning the fever was caused by something viral, which is better), and he still doesn’t have fever. So, we wait for the ANC to rise, which in the words of one of the doctors is like waiting for a scab to grow…very slow and nothing you can do about how long it takes.

I read tonight from Streams in the Desert and thought I’d share because it was so encouraging.

“Let us run with patience.” Hebrews 12:1 KJV

Running “with patience” is a very difficult thing to do. The word “running” itself suggests the absence of patience, or an eagerness to reach the goal…[This] is a kind of patience that is harder to obtain — the power to continue working after a setback, the power to still run with a heavy heart, and the power to perform your daily tasks with deep sorrow in your spirit. This is a Christlike thing!

What a perfect description of how we feel right now. We are certainly “running” with deep sorrow as we watch Gage endure days at the hospital, see the disruption it causes at home (Ellie is pretty much on a hunger strike right now–her 2-year-old way of letting us know she notices what’s happening & doesn’t like it), and desperately miss being at home together. The festivities that this week should have held only deepen the sadness…Avery opened her birthday gifts with us at the hospital tonight, and tomorrow night Avery & Ellie will trick-or-treat without Gage (who was to be ‘Batman’ to Ellie’s ‘Robin’).

Still, am I encouraged by the answered prayers, the faithful friends and the wonderful care we receive at Children’s. Please pray that in the face of overwhelming days and four little kids counting on us that we would be able to “run with patience” as we depend on the Lord.

RH

Disappointed

Blake and I awoke at 6 a.m. to the news that Gage’s ANC has dropped to 21…a big disappointment. We’ll talk to the doctors later today, but it’s still basically a waiting game.

Also, today is Avery’s 7th birthday, and so we’re all sad that Gage isn’t home to celebrate. I’m sure we’ll also miss Halloween, a holiday all our kids absolutely love. They’ve had their costumes for over a month and always love to dress up. This is usually one of the most fun times of the year in our family with two birthdays and Halloween all in one week; it’s especially hard for Gage to be in the hospital right now.

Really, this morning Blake and I are just sad and disappointed…and we have to switch gears to juggle Gage at the hospital and starting to spend more time with the girls, as this is so hard on them too. Last night as I was leaving to return to the hospital, a friend was bathing Ellie. I said, “Bye Ellie. I’ll see you tomorrow.” Her response: “Please you not leave Mommy.” I so wish I didn’t have to. We are all ready to be back home together.

Please continue to pray for God’s strength for us each day and that Gage could come home soon.

RH

Waiting Game

I (Rebecca) am home again for a quick minute so I’ll give a brief update. Gage has felt a little better today and enjoyed having Avery in his room for part of the afternoon. However, he wasn’t so happy with all of the other visitors to his room, and he has kicked out several of the residents over the past few days. Nothing like a five-year-old telling a 27-year-old that she needs to leave the room!

Right now, thankfully, Gage’s fever hasn’t returned, and his ANC was at a 70 this morning. On any other day, that number would sound terrible to us, but it was a big improvement from zero. We hope to know something tonight about the blood culture in regards to what caused his fever on Saturday. So, we’re basically still watching & waiting…but nothing has gotten worse.

Your prayers are so encouraging and mean so much to us. Please just keep praying for Gage’s health, a quick return home and for the girls as they miss us. Please also pray for strength and energy for Blake and I…the hospital is draining, but I’ve learned that coming home is too because the girls will need us so much emotionally.

RH

Still there…

I (Rebecca) am not sure how many nights we’ll have at Children’s…depends on three things. Please pray:

* That the blood culture comes back showing that it was a viral infection, not bacterial.

* That Gage doesn’t have more fever. Today he’s stayed in the 99 degree range, which the doctors are okay with.

* That his blood counts/ANC would recover. It dropped from 60 to zero, so he literally has nothing in his body except the antibiotics to fight a bacterial infection.

The blood counts recovering could take the longest time, and we’re in the hospital until they do. Please pray that Gage would feel better, tolerate missing out on his birthday plans this week and be able to come home soon. Please also pray for the girls and the army of people helping take care of them…for peace, calm, security and patience.

It was so encouraging to come home and see all the posts from those of you praying. Thank you for fighting with us.

RH

Staying the Night

I (Rebecca) have about 30 seconds to type this…but please pray for Gage. He’s been admitted to Children’s for the night after he and Blake spent the entire day there waiting for a blood transfusion and antibiotics They arrived in the ER at 11:30 a.m. and didn’t get a hospital room and the transfusion started until 5:45 p.m. Gage’s fever also spiked to 102 at one point, and his ANC is 60 (a number that reflects his immune system…below 500 is too low, and 60 in non-existent). So, we’re staying the night to see what his happening in his body. Please pray that the blood would improve how he feels, his tempura would drop and that the blood culture they do wouldn’t show any infection that concerns the doctors. Basically, just pray that the transfusion and the antibiotics are enough, that nothing unexpected comes up and that we can come home tomorrow…his 5th birthday.

RH

“How’s Gage doing?”

So often, people ask me, “How is Gage doing?” … and it’s such a hard question to answer. First of all, if Avery or Gage are with me (Rebecca), I really don’t have the freedom to answer honestly. They both are always so aware of what’s being said and so impacted by his health, that I don’t want them to continue to hear to multiple re-caps of how hard it is or how sick he is.

Secondly, the physical, social and emotional challenges Gage faces every day are ever-changing. The list is long…stomach aches, leg pains, nausea, inability to use his legs normally, extreme fatigue, moodiness, anger, sadness, lack of time with friends, little time out of the house…and on it goes. People often say, “I saw him the other day, and he looked so good. He must be doing better.” Yes and no. He can get out of the house and enjoy things for a brief time, but then on many days, he’s exhausted the rest of the day. Take today … we went to his pre-school to celebrate his birthday by bringing cupcakes to his class (although he is not attending school right now). He was thrilled to pick up the cupcakes, go to the school and share them with his friends. However, as soon as snack time was over, he was ready to go. He came home and sat on the couch for several hours, until Blake took him to the park where all he could do was sit on the swing for about 30 minutes. He wanted to come home early, so they did. By 3:15 p.m., he was asleep downstairs on the couch, where he slept for almost three hours.

Also, last night we also had another round of ‘musical beds’ because Gage woke up at 3 a.m. with leg pain and nausea. So, after getting him some medicine, he slept with Blake the rest of the night, and I moved back into the bottom bunk with Avery sleeping above me. Although every night doesn’t go like that, we’re almost always up to help him at some point each night.

So, even though there is much to be thankful for, our best answer to how Gage is doing is that he’s still really sick, there’s nothing easy about it for anyone in our family, and we covet your prayers.

As I watched him today, I had several thoughts that I’ll share as prayer requests…

* Please pray that his counts are good and he doesn’t need a transfusion on Monday (5+ hours). His paleness and lack of energy right now is a possible indicator that he might need one. If not, we have a very short clinic day, which would be a welcome change.

* Please pray for us as we start one of the hardest rounds of treatment on Nov. 12. Blake and I are both dreading it, as we’ll repeat the drugs that were so hard during the summer, caused many painful side-effects and sent us back to Children’s for several nights. Please pray that we would trust the Lord for His provision of strength and comfort during that time, and that Gage’s side effects would be much less.

* Please pray that I won’t worry about him all the time. It sounds impossible even as I type it. Right now, I often think, “I can’t imagine doing this for three years…chemo every day, living with a high risk of infection, always going to Children’s, watching him start elementary school next year in the middle of this, parenting a child with cancer in the middle of a family with 3 other young kids, etc…” It seems completely overwhelming. Blake has been so good to remind me to take one day at a time…and to remember that we’re not promised three years with any of our kids. So, I’m trying to just love each kid each day and leave it at that. More and more, I appreciate why the Bible tells us not to worry about tomorrow, but to take care of today.

* Please pray for Blake and I as we continue to walk through our emotions, doubts, fears and sadness during this time. It’s still hard to believe that Gage really has cancer. I wake up every morning, and it’s still my first thought…”Is it really true?” Even today, standing in his class as he talked with his friends, I watched them all and wondered “Why is my child the one with cancer? Why is sweet Gage suffering daily while his friends are at school playing like 4-year-olds should do?” There are no easy answers for those questions.

* Please pray that Avery, Ellie and Wesley would continue to feel our love and our presence even when Gage takes up most of our attention and energy. I continue to remind myself that the Lord is the one who holds all things together…including our family and each person in it.

Thanks for your continued prayers for us.

RH

Not a Complainer

Yet again, Gage was amazing today at clinic. He’s definitely getting used to the routine…finger poke to check blood counts, height/weight room…and then whatever treatment is on our roadmap, as long as his counts are okay. As much as I (Rebecca) hate for him to have to get used to all of this (no kid should be used to all this!), he is adjusting to and accepting this part of his “new normal.”

As for his counts today, we barely made the number we need to get the chemotherapy. His ANC has to be 500, and today it was 782. This number is also a reflection of where his immune system is right now…pretty low from the assault of all the chemo, but not unexpected.

Today’s chemo at clinic came in the form of two shots to his thighs. You can see in the picture how the nurse puts numbing cream on his legs beforehand. Then, we wait for an hour for the cream to take effect, all the while with Gage knowing that the shots are coming…never easy. Still, he is developing an amazing ability to stay tough and not complain. He patiently waited with us in the busy waiting room until his name was called to go back for the shots. He was kind and calm with the nurses as they cleaned his legs and prepared the shots…amazing for a four-year-old who knows he’s about to get two shots. Then, the shots, a few quick tears and off to the toy closet for a small reward.

Really, it’s hard to believe he has the maturity and toughness to endure a “short” three-hour clinic visit with literally not a word of complaint or impatience. We were certainly proud of him today. He lived out Philippians 2:14, “Do everything without complaining…” in a way that most adults would be challenged to do…and that I have a hard time doing in much less difficult circumstances.

Thanks for your continued prayers and for all of you who continue to ask us each Monday how clinic went. It’s great to know we’re not on the road alone.

RH

Fun (?) at the Air Show

Blake and I took the kids to see the Blue Angels at the air show on Friday. A friend gave us passes that allowed us to go before it opened to the public today…and allowed us to take Gage without having to be in the middle of a crowd.

To hear the kids tell it, it was an awesome, amazing show. Too bad that while they were actually there, they just whined and complained about the noise, lack of concessions and heat. No doubt, Blake and I enjoyed it much more than they did. We decided that before our kids can really enjoy the Blue Angels, they probably need to be old enough to know that four jets flying by in perfect formation while upside-down is definately not normal.

As for Gage, he’s had a rough weekend, but thankfully he’s not in the pain the steroids caused last time. Of course, he still doesn’t feel good, but we’re thankful for the answered prayer of no leg pain.

Please continue to pray for us as we juggle Gage, Ellie & Wesley, who are all three dependent on us for almost everything right now, and Avery, who is having to fend for herself more as the only one old enough to do so.

Thanks, as always.

RH

Life on Steroids

Well, we’re half-way through our week on steroids, and all I (Rebecca) can say is that steroids are not our friend…except for the obvious fact that they’re fighting the cancer in Gage’s body. As for daily life, they certainly make it rough.

Sweet Gage hasn’t felt well this week and certainly isn’t himself. All the “normal” steroid side-effects are showing themselves: disrupted night time sleep, constant hunger & eating (including during the middle of the night), extreme emotion and grumpiness, and generally just feeling crummy.

This morning, at 6:15 a.m., he asked me to go pick up spaghetti from a local restaurant. After I explained that they weren’t making lunch food yet, he requested ravioli and pizza from the frig. By 6:30, he was done with his crazy, Italian breakfast. And the constant request for all kinds of food will go on non-stop throughout the day. The other crazy thing is that the chemo also kills the cells that make his taste buds. So, sometimes he craves something, we get it for him…and then he’s angry that it doesn’t taste right. I know it’s very frustrating for him.

The hardest thing for me is the irrational, emotional rage that the steroids create in him. This is very hard on my relationship with him, and probably even harder on his relationship with Avery and Ellie. They certainly can’t understand why he is so angry and quick-tempered with them. And if daily sibling conflict isn’t enough to navigate as a parent, the challenge of adding a steroid-raging child to the mix is more than enough. So, yesterday morning, I had to call in reinforcements (Blake) before 10 a.m….very humbling to say the least. It’s hard to imagine how it could get so bad so fast, but it just did. Also, I didn’t have much “in the tank” to absorb all that was happening after spending the last several days almost exclusively with him as we battle through this week. So, I spent the morning praying for wisdom and patience…and trying everything I could think of to calm him down. When he was upstairs in his room alternately screaming and slamming the door, I knew I needed help. Thankfully, when Blake got home, it made a huge difference and was a big comfort to Gage.

Please pray for Gage’s emotions (and ours!) as we finish out this week. Also, please pray that the leg pain that the steroids caused last time at the end of the week wouldn’t be as bad this time. Before, he spent most of the weekend on prescription-strength Tylenol with Codeine, and it still wasn’t enough to cover the pain. I can’t even describe how hard it is to watch him hurt and be unable to make it go away…especially after all that he’s been through. At this point, the pain makes him really sad too, because he understand more and more how sick he really is and how long this road is. So, please pray.

As always, thank you.

(And I forgot to mention, Ellie decided she’s ready to be potty-trained this week.  “Mommy, I want to potty train and wear big girl panties.” Great timing!)

RH