think Rocky vs. Apollo Creed...the first time

Isaiah reacted badly to Thursday's chemo (his eyes were nearly swelled shut, his lips blew up to twice their normal size and he was covered with hives. I had a picture here but Carm censored it - it was pretty rough) so we were back at the hospital all day Friday. We actually left at one point, thinking we had it under control, but he was covered in hives within 10 minutes and we had to return. They gave him two new meds and watched him for awhile. We left again around 4 but within minutes the hives and swelling came back again. We stopped at a friends' and had several phone conversations with the doctors. We're home now and are watching him closely.

We so appreciate your ongoing interest and continued prayer for Isaiah. Please pray also for Sienna whose anxiety over her little brother is becoming very apparent.

chemo 4 ways

Tough day today. We were at the hospital from 9 to 4. Isaiah had blood drawn to check his counts, an x-ray to check for stress fractures in his lower back, a spinal tap, and four different chemo drugs: one in the spinal fluid, one in his thigh muscles, one into his veins (through his port) and one orally. Plus he fasted till 2. He's wiped out now and not feeling well. His eyes are all puffy. That's just a whole lot of chemicals for a little boy.







On a happier note, we had a fun night camping in my folk's pasture earlier in the week. Before the whole leukemia thing started, we were planning a backpacking trip. Almost daily during our hospital stay Isaiah asked if we could still go camping when he got out. So we adjusted plans a bit and did the best we could under the circumstances. It was a great night. And then Bita made us pancakes for breakfast.

fasting again

We got a call today...somehow there was a mix-up and what we thought was just a 1 hour "check-up" scheduled for tomorrow (Thursday) is now another spinal tap and chemo treatment. That means we're fasting again tomorrow and will be at the hospital all day. We'll share more news tomorrow night...

Thanks for praying for our boy.

[Here's a pic of the kids in our neighbors' pool...the much-anticipated "first swim" of the summer]

remission!

We just heard that Isaiah is officially "in remission," which means that all visible signs of leukemia are gone and healthy cells are being restored. Years ago, we'd now be done with treatment. But they've discovered that if they don't continue chemotherapy, the leukemia has a good chance of coming back within 6 months.

So we're pausing today to thank God that Isaiah's body responded to the treatment so far. And we're slowly gearing-up for the next 6 - 8 months during which (the literature says) they will deliver "the knock-out punch" before entering into a long "maintenance" phase.

We were also told that Isaiah has been categorized "low risk" (vs. "standard" or "high") which means his treatment will be the least-severe of the possible treatment arms. We're so thankful for this (the side-effects of treatment usually sound scarier than the cancer itself).

Tonight our family will be taking some time to thank God for these good results. We want to invite you to join in thanking God with your family. Thank you for stretching in prayer for our son. Please continue to pray for us. Our next appointment is Thursday. We'll find out then what the next 45 days will look like.

double fistin'

Huge thanks to all of you who graciously came-alongside us today. Knowing that so many of his friends and family were fasting with him was a big encouragement to Isaiah. The day was rough at moments but Isaiah pushed through! He had such a look of relief on his face when he woke up from the anesthesia, asked "Can I eat now?", and we said, "Yes!"

We won't hear the results of today's tests until early next week. We're hoping to hear that the leukemia is officially "in remission." Then it will be "one big month down" and many more to go. Thank you for walking this road with us.

day 29

Tomorrow is our "day 29." It's the final day of "induction," the first phase of treatment. Isaiah will be "put to sleep" for a bone marrow biopsy and a dose of chemo shot directly into his spinal fluid. They'll also test his spinal fluid in order to test for Minimal Residual Disease. At day 7 his spinal fluid was clear of cancer. Obviously we're hoping it's still clear. The toughest part of tomorrow for "Mr. Hungry" (as he's dubbed himself) is that he'll need to fast from 6 a.m. untill after the spinal tap and bone marrow test at 2 p.m. He is literally eating every hour these days, beginning very early in the morning, so fasting is going to be a challenge.

We will be fasting with him tomorrow, hoping the knowledge that others are feeling hungry with him will give him courage. If you'd like to fast with Isaiah, too, please let us know so we can better cheer him on.

He plans to break his fast with an In-N-Out Burger. His mom told him, "Eating a burger is not a great way to break a fast." Isaiah responded, "Ah, sure it is!"

father's day weekend

We enjoyed a quiet weekend at home together - playing in the yard, seeing family, cleaning the house, and hanging out with our great 5th st. neighbors. One of the many blessings of this season is a new sense of appreciation for the "little things. "

home again

Isaiah's chemo appointment went well today, thankfully. He's got a mild fever which we're watching carefully, but his ANC climbed from 200 on Tuesday to 700 today (normal is 2000 - 8000) so that was good.

We'd greatly appreciate your prayer for him in the next few days as he deals with the side-effects of today's chemo: vincristine.

Overall, he's doing well (and getting chubby).

overwhelming support

This week we've been moved by the strong support of friends, friends-of-friends, and churches. Isaiah has received hand-made quilts, a superman blanket, care packages with art supplies, and some really cool toys. We heard that someone lit a candle and prayed for him in the Notre Dame Cathedral in Paris. A couple days ago he received 55 hand-made cards from 4th graders at St. Mary's Catholic School in Manhasset, New York. The childlike faith represented in these cards was remarkable. A little girl named Morgan wrote, "Dear Isaiah, We prayed for another kid and he got better. Thats because he belived that God heard our prayers and will get him better. Thats why if you belive in God, miricols happen. Keep beliving."

up a little

We went in for our first outpatient check-up today. We were in and out like the burger in less than 60 minutes. Hour-long doctor visits used to feel taxing, but when compared to 15-day stays they're easy.

Isaiah has gained five pounds since being diagnosed (he eats all day long - it's the steroids) which puts him at 3'5", 43 pounds. His ANC increased from 80 to 200 (so he still has almost no ability to fight infection, but at least we're going in the right direction). And he was completely unfazed by the whole "re-accessing the port" experience, which was a great confidence-booster (for all of us). He was very calm. We were proud of him.

So we drove home a bit surprised to be "done" for the day and relieved that he's doing OK.

On Friday we go back for a chemo treatment (vincristine: the big nasty). Thank you for your strong, ongoing support! You are all fueling our courage.

happy to be here

thank you: for the prayers, the food, the care of our house, the letters, phone calls and emails, the comments on this blog, all the practical helps over the last two weeks. We're in a battle but we've got a big army backing us up. Your presence and encouragement makes such a difference throughout the day.

what's next: We have 3 out-patient appointments over the next two weeks.

please pray: that Isaiah's white blood count will go up and that his strength will improve (he's still pretty shaky on his feet.)

home

Dear friends, we're home. Everyone is asleep in our quiet, peaceful, superclean house. What a blessing. 15 nights in a hospital make you really thankful for things like peaceful music and your own toilet.

Isaiah's blood counts are still very low (ANC is 80) but he's had no fever for a week and has gotten stronger. So they pumped him full of healthy blood for 4 hours and decided to let us go home for the weekend. Though we'd like to throw a party we're going to have to quarantine the little guy - his risk of infection is too high. We'll let you know when we can begin to have visitors.

We are overwhelmed by all the help we've received from our family, our church community, and our 5th St. neighbors. We came home to a completely clean house, a pile of cards and gifts, a full frig, and even a weeded and mowed back yard. Thank you all for serving us and for praying for us.

More news and pictures tomorrow when I can think...

27 supermans

It's been a full two weeks since we checked into "Club Sutter." In some ways it feels like time has stood still. We've been so focused on the immediate needs here that we're finding ourselves asking each other, "Is this Tuesday or Wednesday?"

Isaiah has long lost count of the days. But he's excitedly tracking his stay by a little game we set up to try to get him to swallow his meds the first time: for every pill he swallows he gets a superman logo on the white board in his room. As of this morning, he's up to 27. We started by trying to gag down pills hidden in ice cream, oatmeal, yogurt...it was brutal. Somehow swallowing the pills with water alone became his chosen challenge. And this morning he told me, "Dad, I got that one down with just spit!"

Now if we can just convince him to take a bath (you know, you have to choose your battles...)

Thank you for praying for our son. We're so grateful.

And now the good news…

After bottoming out at zero yesterday (normal is 5,000 – 10,000) Isaiah’s white blood count is up today to 1100– a good sign that the chemo has knocked out much of the leukemia cells and that now healthy cells are growing. Thank God. The bone marrow test “looked good.” (We get some pretty vague reports at this stage). They’ve taken him off his anti-biotic and it’s been several days since he’s had a fever. He still has many difficult moments each day but, overall, we’re seeing improvement and hope to be home soon.

What we need now is strength – he hasn’t wanted to get out of bed since our big outing to the play room a few days ago. Please pray for his strength to return.

“Dear Jesus, please give my daddy strength to help me get better.” - Isaiah praying for me this morning.

“Tell (cousin) Maicee I miss her and hope to see her soon.” - Isaiah’s response to my asking him what we should write in his blog.

still waiting...

Friends, we didn't receive any news as expected today. In general, they say Isaiah is responding well. But we haven't heard the results of the bone marrow test from Friday. Thanks for continuing to pray for Isaiah. His stomach is very upset from the chemo... More soon. (It was great to see many of you at Emmaus on Sunday. We feel so supported by our community).

isaiah walks

Isaiah said this morning that he wanted to try to walk. (He's been in bed for 11 days.) When I told him it was so good to see him on his feet, he asked, "Does it make your heart happy?" I said, "Yes. Very happy."

(Thanks for praying for him yesterday...he did great through all his tests and chemo. We'll hear results on Monday. )

go ahead, put a needle into my chest

Ok, I admit it. I'm very proud of my son. Here's some shots of him having his "port re-accessed" last night.

rough night, encouraging morning

Isaiah s t r u g g l e d for over 10 hours yesterday to poop. He was really hurting. The meds stop him up. We've never prayed so much for poop. After BMs at 1:30 a.m., 3:30 a.m., 5:30 a.m., and 8 a.m., he's smiling again.

Today's a big day - spinal tap and bone marrow draw at 3. The results are key.

Here are some words we're hanging onto today:

from Darrell, the dad of Matthew, Isaiah's roommate: There are some things that God says that just don't make sense unless you're suffering.

from Isaiah, early this morning while he was receiving a platelet infusion: Why do you cry sometimes when you're happy? (me: are you happy now?) Yes...because I finally feel better.

(Isaiah continues) Do you remember that movie about the football team, Dad? (me: I think so) If we win, we'll praise God. If we lose we'll praise God.