Trip to Philly - October 2011

We had an opportunity to take a quick trip to Philadelphia. We had a wonderful time, and also had an opportunity to spend time in the Nation's capitol.

Here's Luke outside our house in Philadelphia. This is a special picture, seeing as how his Daddy sat on this very bench about 30+ years ago.

October, 2011 - Physical Therapy?

And the hits keep on coming...
Some of the medications Luke is taking causes foot drop or foot numbness, so we were recommended to visit a physical therapist. Overall, Luke is ok. They did see some weakness in his legs, and may consider futher sessions. For now, however, we will be exercising with Luke to make sure we do our part in helping him in this way. We pray, and ask that you pray, that his legs, feet, ankles, and overall balance is strong and good. He has low arches, so he has an arch support now, and they did mention ankle braces, but we will not know if that is necessary just yet. Those ankle braces are meant to stabilize his ankles so he is more comfortable running around.

Here's a precious boy ready for some therapy.

Here, the therapist is checking out Luke's range of motion, etc.

I guess we never thought much about it, but they expect him to walk up and down stairs like most grownups do...one foot on one step, other foot on next step, etc. What he had been doing is get both feet on one step, then the next, etc.

They timed Luke's running and looked at how he ran. They thought he ran well. He ran straight ahead, full-speed, stop-and-go, stop-pickup-go, etc. We need to do more of that with him.

They asked Luke to tumble forward.

After all of this, the therapist asked "is this normal for him". My response "um...he doesn't usually do any of these things". It was enlightening in that we do have several exercises we can do with him, and we could probably benefit from the exercise too :)

Almost his Halloween Costume

OK... so we are starting to understand the phases Luke goes through and how unpredictable these phases are. We're talking about what he's into. Today, he is into Ben 10 and Transformers. 3 weeks ago, he couldn't get enough of superheros... and before that, he was loving the X-men.

Here's Luke as Woverine... I thought this was the coolest costume I have seen. What he is going to be is cute (it's not going to be Wolverine).

July 2011 - Back to School, Back to the Hospital?

After a year, Luke was finally in a position to get back to Montessori School. He missed it. He was happy to go back. We were concerned, but optimistic. Unfortunately, between school and 2 VBSs, we may have run him ragged. He had cold-like symptoms, fever, and elevated heart rate. We had to take him to the ER, and he had to spend the night at the hospital.

Here's Luke at VBS. He's growing up so fast. Getting tall as well.


Due to his elevated temperature + elevated heart rate, the ER put him under their SHOCK PROTOCOL, which basically included IV fluids and monitoring.


Here's Luke showing off his IV access. By God's Grace, his port has withstood so many punctures without incident. Please pray to continue to preserve that port.



Finally, he could get down to business.


After the hospital stay, they could not determine the cause of his fever and tachycardia (fast heart beat). Within a week, his cold seemed to show itself, and after another week, he seemed entirely better. The ordeal gave us more complexity for a while in that we had to monitor his heart rate at home.

Our poor child...having to go through so much. We pray for his healing. We pray for his strength.

April 10th, 2011 - He's come a long way

Luke continues to do well. We're thankful for that. Here's Luke scaling a very tall wall, without help, and without fear...at least no fear on his part, plenty on ours.

It's been one year!

We can't believe that it has been one year since Luke's diagnosis. We are so thankful for this child that God has blessed us with. We recall one year ago when we hear the horrific news and not knowing what the future holds. Luke has gone through so much that we can't even imagine any 2 1/2 year old going through all that he has in this past year. He is such a courageous child. He has gone through high doses of chemo, loss of hair, being homebound for months, and taking so many medications. Through it all he has given us as parents the strength that we needed this past year. Many people told us God doesn't give you what we can't handle. We feel like God gave Luke the gift to be able to handle more than he could. He is such a sweet and loving boy who is always thankful for God's healing love. We are truly blessed by the amazing support of family, friends, and strangers who have made this year bearable. We look forward to the next 2 years and 3 months and trust that God will answer our cries out to him. And we know that in all things God works for the good of those who love him, who are called according to his purpose.(Romans 8:28)

Karate Kid made me think

I was watching the "new" Karate Kid with Jackie Chan and Jaden Smith yesterday, for probably the 5th time. In the original Pat Morita and Ralph Macchio movie, there's a scene where Mr. Miyagi is drunk and sad, and it was due to his memory of the passing of his wife and son. It looked as though it was a ritual, where he dressed up in his own military uniform to re-live the moment. In the "new" movie, Jackie Chan (Mr. Han) basically rebuilds a car through the year, then destroys it on the anniversary of the day where his wife and son were killed in a car accident.

Why am I mentioning this? It just hit my brain when Mr. Han mentioned the date when that happened. June 8th.

For us, the significance of June 8th marks the beginning of Luke's chemotherapy. On June 8th of this year (2011), God-willing, Luke will complete his 1st year of chemo, with 2 years and 3 months to go after that to complete therapy.

As I reflected on the Karate Kid movie, I was thinking about how a wise instructor like Miyagi or Han would take time through the year to build up to what appeared to be a destructive moment every year. Then again, maybe, as Han rebuilt that car through the year, maybe he was reflecting on life, etc.

For us, the year anniversary of Luke's chemotherapy and recovery marks a period of miracles, mercy, love, and grace. What's different from the movie? We look back, not in sadness, anger, rage, or guilt, but rather, with thankfulness of the past, and hope for the future. Into His mighty hands do we commit Luke and our family. May the Holy One be with all of us. WIth our family and friends and well-wishers, may His face shine upon you!

Luke likes playing video games?

Thanks to Uncle Manoj, Luke seems to have developed an interest in playing video games. For him, it's not about winning, it's about playing the game. It's really fun to see.

April 27th - thankfully, another good day

We're at the clinic today for IV Vincristine. Luke's blood counts continue to be good. We're really thankful for that.

Another reason for the good day is that Luke's grandparents are in town from Philly :) .

Here's Luke refusing to pose for a picture :)

A story to tell

Sometimes we look at Luke and wonder what he's thinking. It is always good to step back from everything and give time to thinking about things. So often folks do not take the time to do that. What will Luke remember? What will Luke share in the future?

We laugh together, we cry together, we hope together, we pray together.

Quilt

When Luke was initially diagnosed with leukemia, I gave my friend Jonathan a call. He shared our trial with his folks. His folks upheld and continue to uphold Luke and our family in their prayers. They extended several acts of kindness to us over the last several months. A few weeks ago, we received this quilt from J's mom. She made the quilt with 22 squares, representing the 22 families in their prayer chain for Luke.

When people say you can't see God, I say, we see God everyday. Through His creations, and also, through His people.

Thursday, March 31, 2011

Luke has his monthly chemo scheduled today. Hopefully, his counts are good enough to continue medicines. Luke is such a precious little boy. Sometimes it seems unthinkable that a yound child (and a family) can endure such trials and challenges. This "new" routine is becoming "just a way of life" for Luke, and thank God, he is accepting of it. It's normal to him. Of course, on the days he has chemo, they must access his port. We pray that today will be an easier time for him. What he doesn't know is Daddy's got some surprise jungle animals to cheer him up :)

As we approach his 10th month of chemo, we reflect on how precious life is. Life is no longer about the usual things only. There's a fine-tuned attention and focus given to his care. Thankfully, Joyce and I make a good team. We stand each other up, and pick things up, when the other is too weak to do so. Our family is blessed in many ways. May the Lord continue to strengthen and deliver us. May the Lord continue to bless Luke with good health and freedom from illness. We pray and hope that Luke has many, many opprotunities to witness God's faithfulness and unfailing love.

ADDENDUM:
So, Luke's counts were "ok". His ANC was at 500, which is the lowest it can be to continue chemo, without interruption. They did go ahead and give the dose of vincristine iv today. His platelets and hemoglobin looked good. For some reason, his liver enzymes have been very high with the last 2 blood tests, so they will keep an eye on that. We need prayer. Prayer for improvement in blood production, protection from infection, preservation of liver and all other organs, and continued overall well-being. His monocytes were about 25% which means his marrow is producing cells (neutrophils), so that is promising. He is in great spirits, and prayers were answered for sure... he did very well with the accesssing of his port (had a strugglw with the de-accessing though).

Appacha and Ammachy from Chicago came into town for the weekend and came straight to the hospital to see Luke. Luke is have a grand time with them, and we're all happy to be together.

Luke enjoying the day

Nice day today...enjoying the weather...playing soccer outside, planting things, drawing pix with chaulk.

Here's Luke standing in front of the words his Appacha wrote some nine months ago. Luke has definitely learned quite a bit.

Sometimes I ask "how did you know that" and he replies "I know a lot of stuff".

Saturday, March 19th, 2011

On Wednesday, Luke's ANC was 360. Anything below 500 means he can't get his chemo and he must be kept at home. To him, no problem. He's not upset. Good spirits, good energy. Happy. To us...necessary reminders that we shouldn't get to comfortable. Most importantly, we should always remain prayerful.

It's interesting. As parents, professionals, intelligent folks, adults, independents, etc...so often, we lean on our own understanding, when the quickest, simplest, and most important thing to do is drop on our knees and pray... when things are bad OR good.

As we were driving home from the hospital, we were talking about ...hmm, maybe we could've fed him more stuff, or made him rest more, or maybe shouldn't have taken him there, etc, etc.... then, it led to... ok..let's give him more veggies, more protein, more rest, more naps, keep him at home, no visitors...and we need to be more prayerful... at that moment, I thought "God, thank you for the clarity". "Going to Him" should always be first on the list of possible solutions to any problem. "Going to Him" should always be first on our thank-you list also.

This is the day that the Lord has made. As we look in the mirror, or look at one another, or look at others, we should continually remember that the Lord made us all. He has a plan.

My bro told me that the literal translation of "seek and ye shall find" is more like "seek and continue to seek". We need to continue to seek Him. We are thankful that Luke is with us and that he is well. Let's all continue to uphold one another in prayer.

Lord help us, save us, and heal us. We thank the Lord.

Spinal Tap Tomorrow - March 2, 2011

It's been a while, but Luke is going back to the clinic for his routine spinal tap (lumbar puncture). Of course, we don't find it "routine". Every time we go to the clinic, it is a reminder of how much we need help and mercy from above. Tomorrow, he gets intrathecal methotrexate and iv vincristine.

This evening, Luke asked "why do we have to go the hospital all the time?". I explained that he's sick, even though he doesn't feel sick. I then thought to say, "something is the matter with your blood, and they give you medicines to make your blood better". "What's wrong with my blood?", he asked.

What's important to us is ensuring that, even though Luke may not understand this treatment business, he knows that what he is going through is not a reflection of him. In other words, we don't want him to think that this is a punishment of some kind.

The end of this week marks Luke's 9th month of chemo. It has been a heart-wrenching experience for us. God has gotten us through. We are thankful for that. We are also so thankful for the continued prayers and love of our family and friends and well-wishers. We have appreciated the prayers, the meals, the visits, the gifts, the care packages, the thoughts, the words, the "everything" that you offer to us that shows us the God's light flows through so many. This light helps to illuminate our world, especially during bleak times. We have hope. We pray for continued faith.

Please keep us, and especially Luke, in your prayers.

8 months

8 months ago today, Luke started chemo. He has 31 months to go. We cling to God and his goodness. We have a mix of emotions every day, but through it all, we are ok, especially Luke. Please continue to pray vigorously for our precious child. Our gift from God has had to endure so much, and we know that he will be reminded this for his whole life. We hope and pray, crying out to the Lord, that Luke is healed. We cry out to you, LORD, please remove the leukemia from Luke's body, and may it never return.

Father God, we PRAY!
Help us to FOCUS on YOU, and not our difficulty
Help us to RELY on YOU, and not our own strength and understanding
Help us to WAIT on YOU, and not act impulsively

Blood Counts are Good today

We're glad to see that Luke's blood counts continue to look good.  Also, our brave boy received more IV chemo today.  Still having a tough time with port access, but he hung in there!

3rd time in BandAid Junction

Once a month, Luke needs to go to the clinic for blood sampling...through his finger. Although he has an implanted IV port in his chest, they only access it for blood samples when he is receiving IV chemo (the less they access it, the less risk for infection).

Luke wanted to watch this video 3 or 4 times. This is from this morning. We hope it gets much more tolerable for him. He has at least 31 more of these over the course of his treatment (which ends, God-willing, in August 2013.

Oh, by the way, "BandAid Junction" is the place within Texas Children's Hospital where kids go for a quick finger stick, bandaid, and back home. We actually hang around after the stick for the results. They could just call us, but we find the in-person interaction helpful.

Maintenance Begins

We finally made it to the day all the doctors have been telling us about. The last 6 months of the aggressive chemo has been really hard and we have been waiting for this light at the end of the tunnel with maintenance. Thanksgiving started with Luke getting a blood transfusion and platelets because his counts were really low. We had a quiet Thanksgiving with the three of us and of course turkey and the fixings.

On December 8th Luke's counts recovered and was able to start the next round of chemo. He had a spinal tap of methotrexate and IV vincristine. He did well other than the fact he still struggles with access and deaccess of his port. Now that this phase begins we will only have to go to the hospital every 2 weeks. One week he will have a fingerstick for his blood counts and the other week he will have chemo. Also maintenance also means more drugs at home vs drugs at the clinic. He has oral mercaptopurine daily, dexamethasone daily for five days each month, methotrexate orally once a week, and of course bactrim. The regimen dictates our lifestyle, when Luke eats, sleeps, and goes out. At the clinic, he got a visit from Santa.

On December 22nd Luke had an appointment for counts and his counts were all normal. His ANC was 1550 which was an okay to go to church on Christmas. We enjoyed the holidays with some close friends and family. Luke got many gifts from Santa and may need another room just for his toys.

On January 5th, he had his first chemo of 2011. He had made counts and was given IV vincristine. The doctor says that we should be able to start having a somewhat normal life....going back to school, activities, playdates, etc.

Thank you for everyones love, support, and prayers through the last 6 months. Please continue to keep us in your prayers and that the rest of therapy goes uneventful.