Happy New Year!

If I (Rebecca) could, I’d stay up until midnight to post this…but all things considered, I’m hoping to be asleep much sooner. As you can see, we changed the look of the blog for the new year. We’re certainly celebrating the end of 2007 and the beginning of 2008 in our family!

Gage had a good day today and is wrecking havoc on the 10th floor with a ‘big wheel’ that he commandeered from the playroom (at least when he’s not hooked up to his IV pole). I just hope he doesn’t run into another patient with it!

And, we’ve finished Week One of this hospital stay: three blood transfusions, one platelet transfusion, 63 doses of antibiotics, 32 doses of nausea medicines, 9 doses of chemo and several doses of Tylenol…at least by my rough count. So, it’s been quite a week.

As always, thanks for your prayers, encouragement and service to our family. We couldn’t have made it through 2007 without you!

RH

“Who Makes the Woeful Heart to Sing”

For the last several days, as I (Rebecca) have considered finishing Delayed Intensification with Gage, the words from the old hymn ‘Fairest Lord Jesus’ have come to mind. One line in particular has stayed with me: “Who makes the woeful heart to sing.”

Yes, there was celebration and thanksgiving in our hospital room tonight as Gage swallowed the pills that mark the end of this stage. Still, our hearts are heavy. The cancer is still here; the race is not yet finished. We’ve watched Gage suffer incredibly for the last six months, both from the cancer and the toxic medicines used to fight it. Even though the next stage (maintenance) is supposed to be easier, he still has cancer and will have a detailed protocol that includes daily chemo (and more) for the next two-and-a-half years. And even after that time, his body will always be marked by this battle, as we navigate the ‘late effects’ and health risks caused by the cancer and chemotherapy that may not surface for years.

In the midst, though, I do often still sing. Songs of praise, songs of encouragement, songs of comfort, new songs that I’ll always associate with this time, old songs that I’ve sung by memory since I was a child…all songs that remind me of God’s loving presence and sovereignty during these hard days.

I’m so thankful tonight that I know the One who can make even the woeful heart sing…

RH

Improving

I’m glad to report that Gage is finally feeling a bit better today. He’s still getting antibiotics and nausea meds around the clock and chemo every night, but at least the extreme, unrelenting nausea seems to have passed and the fever hasn’t returned. He finally slept better for the first time last night and is able to eat again, although the chemo often changes the taste of his favorite foods, leaving them frustratingly unappealing.

Tomorrow night, he takes his last dose of chemo for Delayed Intensification. Finishing this stage is a real milestone, although it will seem anti-climatic to celebrate it at the hospital. And our hospital stay isn’t even close to coming to a close. Once he finishes on Sunday night, we then have to wait for his blood counts to come up on their own…keeping in mind that he’s just endured six months of non-stop chemotherapy. So, we have at least a week (and probably more) ahead of us.

Please pray for Gage, that his health would be protected during these next couple weeks. Please also pray for his attitude, as he’s sad and angry about all this time at the hospital, away from home and family. Since Avery is the only one old enough to visit for any length of time, he hardly sees Ellie and Wesley and misses them all greatly.

And, of course, please continue to pray for the girls, as they are unsettled, emotional and needy…and very ready to have Gage home. It’s hard to continue to explain that he’s making progress, but is still so far away from coming home.

We so appreciate your prayers and encouragement. Thanks for walking this road with us.

RH

Thursday Update

Before I (Rebecca) crawl into my comfy hospital couch-bed, I wanted to give a quick recap of our day. Gage is finally out of isolation, so he is free to move around on the 10th floor. Unfortunately, the playroom (staffed by volunteers) wasn’t open tonight because of the holidays, so he was disappointed that there wasn’t really much to do when he left the room.

So, we decided to pass out Christmas gifts to the other patients on our floor.

Several friends donated three large boxes full of gifts for Gage to share with the other kids during the holidays. (Of course, we hoped we wouldn’t be patients ourselves and would instead make a visit from home to distribute them!) The gifts gave us the opportunity to meet the families around us who are also spending the holidays at Children’s.

There are about 20 bed on the 10th floor, which is exclusively for kids with cancer. Normally, the floor is completely full and there are kids waiting on other floors for a room to open so they can move up to 10. Tonight, the recipients of our gifts ranged from babies to teenagers and crossed all ethnicity lines. As we walked from room to room, it’s hard not to wonder at all that each room represents in each family’s battle against cancer: the prognosis for their child, the financial strain, the juggling of other children, the pressure on marriages, the language barriers and the endurance needed by everyone involved. Today, I met a couple in the elevator whose child has been here for eight months. I can’t even imagine.

Also, we have family friends who are on the 10th floor right now. Their son is 8 months old and has a rare bone marrow disorder. Tonight he is scheduled to have his bone marrow transplant. Please pray for Dawson, that this transplant would heal his body. You can read more on their blog at: http://www.caringbridge.org/visit/dawsonshuford

Thanks to all those who gave us the gifts to share. I know Gage enjoyed giving them, and the other kids loved receiving them. It was a bright spot in a grueling day. Please continue to pray for Gage, as he is battling extreme nausea around the clock…among many other minute-to-minute challenges that are too much to describe.

Thanks for your prayers for all our family.

RH

Dear . . .

Dear Gage, Avery, Ellie and Wesley,

Years from now, when this is all over, I hope you look back on all of these posts and know that you are dearly loved. So many have prayed for you and stood by your side. These 2 letters are for you . . .

Dear Gage,

Right now, it is 4:19 a.m., and I am sitting by your side while you sleep through another night in the hospital. It has been a very long day and a difficult night, but you continue to show tremendous courage. I could not be more proud of you. I know grown men who don’t have your poise, courage, determination or faith. You are truly my hero.

A while back, your mother brought her camera up to the clinic so that you will be able to look back and better remember this experience. At the time, a nurse asked us, “Don’t you wish he would not have to remember any of it?” I told her, “Not a chance. I want him to always remember what he has been through.”

Always remember how the hand of God sustained you, how much your family loves you, and how God’s people held you. And, hold on to the lessons learned at such a young age. Redeem this time by accomplishing all that the Lord has planned for you in the years ahead. You are a special boy, and He obviously has a wonderful plan for you.

I love you.

Dad

Dear Avery, Ellie and Wesley,

Thank you . . .

Thank you for carrying such a tremendous burden. I know that it is scary time. No child should have to go through this, but you have all shown great courage and strength. You don’t know how much it pains me to see your hearts ache and to miss so much time with you.

Thank you for loving Gage so well. If only you knew how much joy you bring to him. At his worst moments, you are always the ones he asks for.

Thank you for providing me with so many laughs, hugs and kisses. Believe it or not, you keep me going. You are a picture of all the best things in my life.

I love you.

Dad

Juggling

I (Rebecca) am home for the night, so I wanted to give a quick update. Gage had a pretty tough day today. He’s getting very strong chemo right now as he finishes Delayed Intensification, which ends on Sunday. He has also had two blood transfusions to get his counts in a better range. And, he’s on rotating doses of three strong antibiotics 24-hours a day. His fever was still lingering, so he’s had a couple doses of Tylenol as well. And, as you can guess, all the medicines above don’t make your stomach feel great, so he’s also getting medicine for nausea and an upset stomach. In addition, he has a cough and runny nose, so he isn’t allowed to leave his hospital room until they determine that it’s not contagious and the coughing stops.

So, please just pray for his little body to be able to endure. And, please pray that he’ll be taken off isolation soon so that he can move freely on our floor of the hospital.

Because of the chemo this week and the subsequent need for his blood counts to recover, we’re probably not going home anytime soon. Thankfully, the doctors aren’t worried. They say this is routine and have told us to expect a hospital stay at this stage.

It’s certainly not going to be easy, but thankfully we have lots of family in town to help both at the hospital and at home…and lots of friends helping too. So, we will do our best to juggle everyone’s needs and take it day by day.

Please continue to pray for Gage’s health, the girls at home, and Blake and I as we face the long days ahead. Your prayers, emails, posts and encouragement mean so much.

RH

“Say A Prayer, Daddy”

Well, Gage took a turn for the worse today, and we were admitted back into the hospital early this afternoon due to low blood counts and fever. Obviously, it is hard to be here on Christmas day for several reasons . . . Gage feels awful, our family is separated from one another, the girls feel insecure about why Gage is in the hospital again, and we are struggling with how to best care for Gage and our girls for the foreseeable future.

I have, however, been encouraged by Gage’s sweet dependence upon the Lord. Even at age 5, Gage has repeatedly told me throughout the day, “Say a prayer, Daddy.” So, I hold his little hand in mine, pull him close and utter a few words asking the Lord to lead us through another valley. And, to be honest, I sometimes question if his faith is greater than mine.

Through all of this, if Gage learns to always turn to the Lord in prayer as he has done today, then that is the greatest Christmas gift I could be given.

On the road to a cure . . .

BH

Santa Came Early!

I recently read an account of a cancer patient who said, “I don’t feel like I have cancer. Cancer has me.”

We can certainly relate. The restrictions of when Gage can or cannot eat, the endless list of medications and their side-effects, and the limitations on where he can and cannot go stifle any sense of normalcy. We have learned to take advantage of every moment he feels well because of how quickly things can change.

For this reason, we decided to celebrate Christmas early, and the kids opened all of their gifts on Saturday morning. We weren’t going to wait and see how he felt on Christmas day when his blood test from last Friday showed low counts and he was in such good spirits on Saturday. I told Rebecca that we were going to take “a preemptive strike at cancer and its side-effects” so the kids wouldn’t be robbed of the fun of being together to celebrate Christmas.

It turned out to be the right decision. His energy level has significantly decreased, he is terribly congested and the cumulative effects of his medication are more noticeable. We are constantly monitoring his temperature to see if he spikes a fever. Thankfully, up to this point, he has not broken 100 degrees. (At 101.5, we immediately head to the hospital.)

Please continue to keep us in your prayers. Specifically, pray for our girls who have had to readjust their expectations this Christmas, for us as we respond to the endless demands of the day, and obviously for Gage. He is weak, tired and desperate for a break from all of the medications, especially the daily shot I have to give him.

He is very close to finishing delayed intensification and beginning a two week break from any medications. Next Tuesday could not come soon enough!

On the road to a cure . . .

BH

Merry Christmas!

Matthew 1:23
Mary will be with child and will give birth to a son, and they will call him Immanuel, which means, ‘God with us.’

“Christmas is God’s reminder that we are not alone. God revealed in the life, death and resurrection of Jesus a reconciling love that rescues us from separation and loneliness. We are not alone; God has come down from Heaven to tell us He loves us!” (from Billy Graham)

As I (Rebecca) have reflected on this Christmas season, I continue to return to the word Immanuel. God is with us. Even in this dark, sad, emotional, exhausting, painful time…God is with us.

God became man when Jesus was born…God with us. If we choose to accept Jesus’ sacrifice on the cross that paid the debt for our sins, the Holy Spirit comes and lives in our hearts…God with us. When we face hard times and those that love God surround us and love us in amazing ways…God with us.

Here’s the list that’s been hanging on our fridge this month. The question: Can you think of times that God has been with us when people that love God have loved us? The answer:

Friends who literally sat on the floor outside our hospital room in back-to-back shifts for 6 straight days in June when Gage was diagnosed…they made food runs, hugged us, prayed for us, hunted down nurses, assembled toys for Gage, and so much more…they were just there

My brother-in-law who drove three hours to Dallas the night Gage was diagnosed, arrived at midnight, and then found the closest (but not close at all) Wal-Mart to buy an air-mattress for Blake to sleep on in the hospital that night, so we could both stay there

Friends who drove us between the hospital and home at all hours that first week, when we were too emotional and in shock to be able to do it ourselves

A ‘Gage’ backpack with weekly gifts that arrive on Sunday night before our Monday clinic visits…always a fun craft to do while we wait and wait

Dinner three times a week since June…and groceries delivered every Sunday

Help creating this blog so that we could share our burdens, you could pray and we would all be encouraged

Friends who walked our new puppy Max and then eventually drove him to Houston to return him to the breeder because we couldn’t care for him anymore…and the wonderful breeder who told us she would give us a fully-trained dog in exchange, whenever we’re ready

Friends who shaved their son’s heads when Gage lost his hair so that they would all remember to pray for our family daily

Gage’s 5th grade cousin who wrote a series of stories and sold them to raise money for the Leukemia & Lymphoma Society…and raised $1,000!

Family who have helped us navigate health insurance, billing and more so that we don’t have to keep up with the piles that arrive in our mailbox daily

Family and friends who took Avery and Ellie for ‘playdates’ all thru the summer…but it was really more like adoption because they had them for the whole day several times a week, and the girls were very needy and emotional

Friends who opened up their backyard pools so we could take the kids swimming once we finally came home from Children’s

A friend who made dozens of ‘family fun’ bags for our family to enjoy ready-made fun whenever we had a minute to do it

Friends who gave us tickets to see the Blue Angels fly at an amazing airshow…and tickets to the circus compliments of Children’s

Friends who gave blood in Gage’s name all throughout Texas and beyond…and one friend who organized a blood drive at his office. After he shared Gage’s story, his co-workers lined up to give blood until the donation center finally had to turn some away because the day was over

A neighbor who begged for a way to help…and so one day, I knocked on her door with Blake’s clothes in my arms…and asked her to take them to the cleaners for me…which she continues to to weekly

Friends coming to our house every night at 5 p.m. for months to get the girls to bed while we cared for Gage…our ‘bedtime helpers’…and the friend who coordinates them all!

Our ‘behind the scenes’ volunteers who kept our good friend’s kids so our friends could come here without their kids to help take care of our kids

A group of young couples choosing to give Avery a Wii so that she had something special just for her to remind her that people were caring for her too during this time…the friend who started the effort loves video games and had been praying about a creative way to serve our family

Our incredible team of doctors and nurses at Children’s who are incredibly skilled, confident and compassionate

Cards to Gage from his class at school and Avery’s class as well

A friend who told me that she would take care of Ellie, even though Ellie had croup, because “my kids can get croup and be fine, but Gage can’t”…and because I was days away from having Wesley, and if Gage got sick, Blake would have to miss the delivery to be at Children’s with Gage

My sister staying with me two nights at the hospital when Wesley was born so that I didn’t have to stay there alone and Blake could be home to care for the kids

A friend traveling in from out of town to take pictures at Wesley’s birth…so we could always see yet another blessing from the Lord in the middle of dark times

Leigh choosing to take a year off from graduate school and instead spend it loving and serving our family…one of God’s greatest provisions in all of this

Gage’s preschool’s complete flexibility and compassion: allowing him to come whenever he feels ok, welcoming Ellie any day, ordering crazy ’school snacks’ that Gage craved during his steroids so that we could have them at home (yeah Cheddar Fetti and Dolphin snacks!)

A wonderful tutor for Gage when it became apparent that school wasn’t possible: a sweet, compassionate woman who has survived cancer twice and has a grandson Gage’s age

The prayers of new friends, like Beth Young (a complete stranger that I have never met, but she has followed our story and prayed for us faithfully…and even mailed Christmas presents to our entire family!)

New friends at clinic who encourage us in the hard times and continue to tell us that the road will get easier

Avery’s first grade teacher, who is so sensitive to Avery…calling when she’s having hard days and ’suspending’ homework for her when Gage had his two-week hospital stay

Grandparents who have given us everything…including a train that now rides around the top of Gage’s room

Friends who volunteered to help me get Avery to and from school even though it wasn’t convenient for them and I couldn’t even reciprocate

A ‘tub of encouragement’ with notes full of friends from Watermark

Hearing from old friends…and knowing that even though years have gone by, they still love you and pray for you

Fun gifts…a Texas Longhorn football signed by Colt McCoy, a Bob Stoops’ autographed OU ball, a Dallas Maverick team-signed basketball…and, Gage’s favorite, an orange parking cone signed by the Watermark parking team

Mimi and Daddyo’s playroom where Gage can always go to get out the house and play…without fear of germs

A friend’s willingness to lend me a very expensive camera lens to take to clinic so that we can have pictures to always remind us of the valley the Lord brought us through…and his faithfulness in the midst of it

Volunteers at Children’s who made being stuck in the hospital at Halloween so fun that Gage said, “This is the best Halloween ever!”

Friends who brought meals to the hospital for Blake, Gage and I during our numerous hospital stays…sure beats hospital food!

Friends who braved our house after we’d been at the hospital for days (and weeks) to help clean things up in anticipation of our coming home

Friends on our street who re-decorated and re-dressed for Halloween (in November) to give our family a magical, unforgettable Halloween

Friends who came over to help us pull out Christmas decorations from the attic and decorate the whole house…all in less than two hours (and they’re coming back to help us put it all up!)

A friend who is a former Navy Seal, who’s come to visit Gage and encourage him as we ‘kick leukemia’s butt!’

A friend who arranged a ride in a Hummer on an off-road track…that we did very slowly and the kids loved!

A friend who offered to wrap all our Christmas gifts, and then recruited the women from a young married group she leads to help…to teach them about serving others…and learning to be served when in need

Half Shell’s restaurant in Snider Plaza that donated 15% of profits for a day to ‘Team Holmes’ at Children’s…and all of you who turned out and packed the house all day long!

Friends who helped with our kids on the day of the Dallas Half Marathon, one friend at home with Wesley and two friends who went with me, Avery, Gage & Ellie out onto the race course to cheer everyone on

Nine friends who all ran the Dallas Half Marathon with Blake to raise money for Team in Training…and raise money they did…to the tune of $25,000!

All of you who have contributed to ‘Team Holmes’ at Children’s…$60,000 and growing…and we are praying expectantly and with great anticipation of how the Lord leads us to use that money to love other kids and families at Children’s

A friend who filled and brought the 21 days of bags for our staircase that encouraged us all as Gage endured 21 days of steroids

Friends in New York who made their own 21-day steroid calendar to help their young sons pray for Gage…and then sent us a picture of them holding up five fingers (with the calendar in the background) when there were only five days to go…to encourage us that they’re in the fight with us

All the fun gifts for Gage and the kids that have arrived at the hospital, on our front steps, in the mail and more…the ‘get-well’ blanket, baby bonnets, toys, food, crafts…and a very fun new CD that the kids are loving dancing to!

Spiderman…what more can I say?

And, of course, all your prayers for us.

Avery, our first grader, wrote the following on the frig poster: “bad time helpers.” I know she meant “bed time helpers,” but I loved how she wrote it. You all have been our “bad time helpers” and the face of God for us these last six months. Immanuel, God with us. Thanks for making it easy to believe.

Merry Christmas!

Rebecca

(And, Gage is doing as well as can be expected right now…just thankful to be at home)

Eleven Hours Later . . .

T-I-R-E-D. There is no other word to better describe how we feel. Our day began at 6:00 am, we arrived at the clinic by 7:30 and we returned home eleven hours later.

Thankfully, Gage’s counts were high enough that we were able to begin the last 2 weeks of delayed intensification. Also, his liver function and heart rate have both returned to near normal—big answered prayers. So, over the next couple of weeks, he will receive new medicines. One medicine must be administered through a shot almost daily for the next two weeks. The nurse at the clinic was kind enough to let me practice on her before I have to give one to Gage. As you can tell from the picture, I’m a natural . . .

We started our day with a spinal tap. I think Gage has grown so accustomed to them that the hardest part for him is having to fast for hours beforehand. Believe me, not being able to eat or drink until noon is no fun, including for mom and dad. As a parent, I’ll never get used to the sedation they use during the procedure. It certainly helps Gage, but for us, emotionally, it is nothing less than disturbing as he is semi-conscious throughout. Yet, the chemo he receives through the procedure is necessary in protecting his spinal fluid from cancer cells.

Once the spinal tap was over, they pumped him full of liquids before he was allowed to take another new chemo. Once that was over, he had to receive more fluids over a 4 hour period. Needless to say, it was a very long day.

Please pray:

1. That Gage would not experience any painful side-effects or catch a fever. The doctors told us that there is a 75% chance that we would end up in the hospital over the next 2 weeks. I can think of many other places I’d like to spend Christmas!
2. For Laurren Smith, a sweet 10-year-old girl Gage met while in the hospital. She was readmitted into the hospital today for more chemo treatment. You can follow her progress at http://www.caringbridge.org/visit/laurrensmith
3. For Troy and Melissa’s son, Gavin. Gavin was diagnosed with ALL on December 1. Gavin has 3 other siblings, and they lost their biological dad less than 3 years ago. Furthermore, they just moved from Ohio to N. Texas last March. Needless to say, they are far removed from family and friends and completely overwhelmed.

Again, we are grateful for your prayers and continued interest in Gage. Your prayers and support sustain us through these trying times.

On the road to a cure . . .

BH