In the last few weeks, as we stopped luke's steroids, his appetite hasn't been great, but ok. Also, every so often, he'll go a day or 2 without a bowel movement (#2), and sometimes, may not have a #1 more than once a day.
Here's Pharmacy 101. The medicines he gets daily, weekly, etc. carry side effects as well as benefits to his condition. Most medicines follow steps we call "pharmacokinetics". Pharmacokinetics consists of steps that include: absorption of drug, distribution of drug, metabolism of drug, and excretion of drug.
Our prayer need, specifically, is for Luke to continue to eat and drink well, and also, that he excretes (#1 and #2; and also, sweat) well. We have upheld this in prayer for a little while now. Also, we've been giving him a laxative, Miralax, as well as trying to get him to drink water (because without water, most laxatives don't work), juice, and to have a well-balanced diet.
Overall, we are very thankful that Luke is feeling and acting so much better.
We know there is a lot going on inside his body every second, and we do not see any of that. We trust in Him, and pray that Luke continues, happily and healthily (is that a word?), to full recovery. Praise God.
Tuesday, July 27, 2010
Sunday, July 25, 2010
Church
With last week's blood counts coming back favorably, we were told to "resume normal activities". Going back to Church was great. We went to the Vineyard last Sunday, and went to Trinity MTC today. It felt really awesome to be back in God's house, with folks that love the Lord, and have been joining us in praying for Luke. Luke did well last week, and did even better today.
Friday, July 23, 2010
Luke is walking better every day
When Luke first complained of leg pain at the very beginning of our journey with leukemia, he did not walk for 20 days. Can you imagine? My goodness. It was so sad and heartbreaking to see our once extremely happy and active child bedridden. He didn't walk because of leg pain, and then, probably a combo of pain and the fear of pain. Now Luke is walking more and more every day. He is testing out running, and has been spotted kicking a ball here and there. Here's a video of a Luke with his new remote controlled car. I like seeing him crouch down and get back up. That is great improvment in his leg strength. We thank God for these answers to the prayers cast upon His ears.
Luke's commentary on his implanted IV port
Every day, we are amazed at what Luke experiences, and he's still in good spirits and encouraged. Last night we were talking about this amazing thing: even though Luke has gone through all of this stuff, and continues to have to endure things, like weekly injections in his vein, in his backbone, etc., he still has a smile on his face. They say that children are extremely resilient, and it seems that Luke is a trooper. We can't imagine what he is feeling inside, but we pray that the next 3 years goes by swiftly. This week we found out an interesting thing. Even after his 3 1/2 year treatment plan, he will need to have annual bloodwork for the rest of his life. We pray that he remembers God's faithfulness, as well as the love of those around him, as he goes through life. We pray that the leukemia leaves his body, and never comes back. We also hope and pray that we all come out of this miraculously better all around.
Tuesday, July 13, 2010
Luke's Status, as of July 13th, 2010
Most current results: PRAISE THE LORD
Bone marrow is clear of leukemia (0% blasts),
Cytogenetics shows that the marrow is clear of TEL-AML.
The above indicates that Luke's leukemia is in remission.
The physician described what Luke's treatment and care will look like for the next 3+ years. We all have a long road ahead. Thankful, our God is faithful, and we continue to pray to remain steadfast in faith. It has been tough for us, physically, emotionally, or spiritually.
God-willing and God-providing, Luke's treatment should end on Sunday, August 11, 2013.
Bone marrow is clear of leukemia (0% blasts),
Cytogenetics shows that the marrow is clear of TEL-AML.
The above indicates that Luke's leukemia is in remission.
The physician described what Luke's treatment and care will look like for the next 3+ years. We all have a long road ahead. Thankful, our God is faithful, and we continue to pray to remain steadfast in faith. It has been tough for us, physically, emotionally, or spiritually.
God-willing and God-providing, Luke's treatment should end on Sunday, August 11, 2013.
Joyce's Birthday was yesterday
We are thankful that Luke could celebrate Momma's birthday (July 12th)! We had some loved ones over. Luke's friend, Sanjay, came over, and they had fun. We were so thankful that Luke could have such an awesome time on the eve of his port-a-cath surgical insertion.
Port-a-cath Placement (July 13, 2010)
Our Luke had his first surgery today. I am beginning this post while waiting for him. They are placing a "portacath" or implanted IV port in his chest, below his left collarbone. This morning was the first time anyone has ever taken Luke away from us against his will. I am concerned about how he will feel about this. I pray that God's goodness is known to him as time goes on. This morning, Luke had good spirits. Very happy and loving. This was also the first time he has gone to the hospital and entered without crying. Prior to this diagnosis of leukemia, I believe I might have said "Luke is a trooper". By God's grace, today, I see this with more depth. "Luke is a trooper. I am thankful to God for that." I believe that we have learned that it is so easy to overlook rejoicing and giving thanks. When we were in the hospital, our brother Robin prayed, and something in that prayer continues to resound. "Through all of this, we pray that we continue to grow to see Your face clearer." We pray for peace and strength for our family and loved ones. At this time, we especially lift up our Luke, God's blessing to us. We pray for no pain and suffering from his procedure today. We also pray for a successful port placement, that can last for the remainder of treatments. Prior to the procedure, Luke donned a hospital PJ set. He was remarkable in great spirits. He was also a little tired, since we were up early. 
My goodness. No words can describe how we felt when we let them take Luke back to the operating room. When we were notified of the procedure completion, we rushed to recovery where he was already waking up. We are scared and anxious as we start on another path with this implanted IV port. Over the long run, it will probably be less traumatic for Luke. 
And here's our blessed child when we got home. Ready to eat some chinese moodles and chicken, and listening to Joyce's iPod. 
Here's a video, prior to the procedure. Luke is playing with a vacuum. Pay attention to the end, where he credits the 2 people that taught him how to vacuum.
My goodness. No words can describe how we felt when we let them take Luke back to the operating room. When we were notified of the procedure completion, we rushed to recovery where he was already waking up. We are scared and anxious as we start on another path with this implanted IV port. Over the long run, it will probably be less traumatic for Luke. 
And here's our blessed child when we got home. Ready to eat some chinese moodles and chicken, and listening to Joyce's iPod. 
Here's a video, prior to the procedure. Luke is playing with a vacuum. Pay attention to the end, where he credits the 2 people that taught him how to vacuum.
Monday, July 12, 2010
Last Bone Marrow Aspiration?
The day he was diagnosed with leukemia, the initial bone marrow analysis indicated 61% blasts in the marrow. At Day 14 of chemo, the target was to get that percentage below 4%. The Day 14 sample showed ZERO blasts, Praise God! Here we see father and son, on July 7th, 2010. This is the sample they take 2 weeks after the Day 14 sample. The target here is <0.1% blasts. This will hopefully be the last bone marrow aspiration for Luke... ever. If the results come back as hoped, and a few other things pan out, he will be considered in remission, and will continue on various chemo medicines for the next 3 years. Pray, pray, pray.
July 4th, 2010
We were thrilled to have a chance to take Luke out for fireworks. Kochumol Aunty and Stacy joined us. Luke had a great time. During the induction phase of Luke's treatment, he is not allowed to go to enclosed places, including Church and stores.
Luke loved noodles...for about a week
With his ravenous appetite due to steroids, he craved "noodoos" for about a week. He especially liked them served with chopsticks. Although Ammachy used chopsticks to feed Luke noodles, Appachen preferred to use the traditional fork.
Luke turns 3!
Philadelphia Appachen and Ammachy, Christine, Stacy, and our friends Sherine and John joined us to celebrate Luke's birthday. We had planned to have it at a bouncy place (Monkey Joe's), but that was now out of the question. The day before we told Luke, "tomorrow is your birthday", to which he replied, "Monkey Joe's?". We were sad. Couldn't believe he remembered. Sad to know he was looking forward to it, but we couldn't provide. We were really pleased that we could have a celebration for him and with him. He enjoyed it. He even let everyone feed him cake! 
1st steps, again
Luke was not walking for weeks due to leg pain. It was a strange feeling to have to go through baby steps again.
Favoring the Left Arm
After Luke got home, it took a while for him to get used to using his right arm again, since he had an iv in it and a board on it for a week. The oral steroids he was taking built up a hunger in him, so he was very content in feeding himself.
Almost Home
We see in this video that Luke was happier and more energetic. He had oral, intrathecal, intramuscular, and intravenous chemo to this point. In plain english, he had medicines given in his mouth, backbone, muscle (thigh), and vein. Also, he had a blood transfusion earlier in the week. The next time you have an opportunity to donate blood, please do it. As I looked at the blood hanging on Luke, I thought, "I wonder if the donors truly appreciate how meaningful and valuable their donation is". There are a few elements in this video that are worth mentioning. Luke found great comfort in a blanket (thanks Lalu, Daisy, and Joshua!), someone sitting in bed with him, and a foot rub.
Video - Luke in ER lobby
Here's Luke as we waited in the lobby of the ER. Even though he wasn't walking, he could enjoy playing with a school bus we bought in the hospital gift shop.
The day of his first chemo
Looking at this picture, you can see that the hand closest to the IV pump has a blanket pulled over it. Over the hospital stay, Luke developed a practice of covering the hand with the IV catheter in it. We imagine, another security action. It was very sad to realize that he was so aware of the pain and fear. At one point, they would take blood from his finger tips 3 times a day. Not like a drop. It was actually more like 50 or 100 drops. They warmed his fingers, then pricked them, they squeeeeeezed the blood out of his fingers. Similarly, they would check his temp and blood pressure around the clock. Luke would scream "go away" and "too tight". If you wanted to be his friend, you would not wear a lab coat or scrubs.
The day we found out
Never in our lives could we imagine that such things could happen to us. We have a re-focused outlook on life. Did we wish we could wake up from the bad dream? Yes. Did we wish that this wasn't happening? Yes. There was a storm of emotions in that room that day. Many of the thoughts were of gloom, and many were for hope. Having a child, I would imagine that parents rarely think about outliving their child. As I looked around the room, I would imagine that a grandparent would rarely think about outliving their grandchild. Why Luke? Why not us? God poured peace over us and cleansed us and refreshed us. At this moment, I am sure that we're focused on Luke and him getting better, and absolutely much less on gloom.
When loved ones tell us "it's going to be ok", does it help? Absolutely. Not only has God provided a peace that only he can provide, but the consistent love offered to us by many loved ones has made a world of difference.
When loved ones tell us "it's going to be ok", does it help? Absolutely. Not only has God provided a peace that only he can provide, but the consistent love offered to us by many loved ones has made a world of difference.
Luke's 2nd Hospital Admission
When Luke was admitted to Texas Children's on Saturday, June 5th, we did not know what to expect. We were asked to go to the ER, which we did. Luke was not walking. Also, he hadn't been eating for quite some time. Cousin Alvin came with us to the hospital. Thankachen Uncle and Kochumol Aunty was with us at the house as we left for the hospital. Saturday morning, Dr. Amaya, our point-person at the hospital, told us that the radiology findings indicated suspected bone cancer or leukemia or lymphoma or infiltrate. He called later to tell us to go to the ER to get worked up by the heme/onc fellow, and then be admitted. We called our parents. Papa and Mummy came down from Chicago Saturday itself, and our parents came from Philadelphia the next morning. Cousin Christine joined us in the ER.
The first night of his stay, Joyce, Alvin, and Christine stayed with Luke. I can't thing of a better group of people to be with Luke this night. These 3 have a blessed gift of making Luke feel happy and comfortable.
Later that evening, Luke enjoyed some fries (at bedtime):
The first night of his stay, Joyce, Alvin, and Christine stayed with Luke. I can't thing of a better group of people to be with Luke this night. These 3 have a blessed gift of making Luke feel happy and comfortable.
Later that evening, Luke enjoyed some fries (at bedtime):
Sunday, July 11, 2010
MRI of both feet
On June 4th (Friday), Luke and I went to get an MRI of both feet. At this point, Luke had gone through so much over the last 2 weeks. We spent almost 9 hours there. Joyce was working until 10pm that day. The radiologist seemed to be concerned. "It doesn't look like an infection". "It could be a trauma....but even still, not likely". "Luke's bone marrow looks odd." "I'd expect more fat in his marrow". "I took a look at another 2 year old's bone marrow pictures, and Luke's looks different."
At the 8th hour, the radiologist told me "I can't seem to be able to contact your pediatrician or the covering physician. I think you should go to the ER. There's somthing about that bone marrow...". He asked me, "what do you think?" I said, "I think we'll go home".
What was on my mind? I had a real feeling that Luke would need to be admitted, and may be in the hospital for a while. In my mind, I wanted one more night for me, Joyce, and Luke to be together, in love and peace, in our home. The next day would have us in the ER eventually.
Here's Luke, less than thrilled, to be in the hospital, again:
Luke seemed to find security in being in his stroller. We actually hadn't used that stroller in a while, but we believe that it offered him some security because it was so bulky.
Luke sitting watching TV, waiting for his MRI. He had to have anesthesia for the first time in his life. He was so upset to be at the hospital. On top of that, the nurses failed 2 times to get an IV started on him, so they had to use gas to put him to sleep. As I recall that moment, our poor child struggled, screaming "Mommy!" and "Daddy!", then slowly passed out. I left him on the stretcher as they took him into the MRI. It was one of the most helpless moments I have ever felt. Leaving our child. Not knowing what was going on. The 30-minute MRI seemed to take twice as long. A friend of mine, who set up the MRI, and used to work there, stopped by to see how things were. She went back to the MRI area to see what was taking so long. They told her the MRI machine crashed, and needed to be rebooted. With ever creak of that door opening, my heart skipped a beat, as I waited to hear about Luke, and see him in recovery.
After the MRI and recovery:
At the 8th hour, the radiologist told me "I can't seem to be able to contact your pediatrician or the covering physician. I think you should go to the ER. There's somthing about that bone marrow...". He asked me, "what do you think?" I said, "I think we'll go home".
What was on my mind? I had a real feeling that Luke would need to be admitted, and may be in the hospital for a while. In my mind, I wanted one more night for me, Joyce, and Luke to be together, in love and peace, in our home. The next day would have us in the ER eventually.
Here's Luke, less than thrilled, to be in the hospital, again:
Luke seemed to find security in being in his stroller. We actually hadn't used that stroller in a while, but we believe that it offered him some security because it was so bulky.
Luke sitting watching TV, waiting for his MRI. He had to have anesthesia for the first time in his life. He was so upset to be at the hospital. On top of that, the nurses failed 2 times to get an IV started on him, so they had to use gas to put him to sleep. As I recall that moment, our poor child struggled, screaming "Mommy!" and "Daddy!", then slowly passed out. I left him on the stretcher as they took him into the MRI. It was one of the most helpless moments I have ever felt. Leaving our child. Not knowing what was going on. The 30-minute MRI seemed to take twice as long. A friend of mine, who set up the MRI, and used to work there, stopped by to see how things were. She went back to the MRI area to see what was taking so long. They told her the MRI machine crashed, and needed to be rebooted. With ever creak of that door opening, my heart skipped a beat, as I waited to hear about Luke, and see him in recovery.
After the MRI and recovery:
3 Phase Bone Scan
June 3rd, 2010 - Luke had a radioactive agent infused intravenously to show doctors what his tissues, blood flow, and bones looked like. At this time, we did not know what was wrong. He didn't want to walk due to foot pain. Turns out that foot and leg pain are common complaints in leukemia. Poor boy...such scary machinery to deal with, along with getting an IV, and with no sedatives. It was a trying moment. One of many. God got us all through.
Luke's 1st Hospital Room
Luke was observed for a day, then released. I wonder what he was thinking when he was looking out of that window. Did he remember what the last 48hrs was like? Was he scared? Was he imagining something? Our precious child had endured a lot, but this was just the beginning. A new experience for all of us. Cousin Alvin was with us from the very beginning of this ordeal. His presence has definitely blessed Luke. A week later, when we received the news that Luke had leukemia, Alvin engaged Luke in the room in such a way that Luke was focused on happiness as we received the grim news.
Before we knew
I took Luke to the ER because he had pain in his foot. "My foot has ouch". We thought it may be a sprain. The ER doc told me it could be osteomyletis (bone infection), which would require hospitalization for IV antibiotics. In my mind, I was thinking, wow, 12 weeks of antibiotics. Looking back, at some point, I mentioned to myself, "why couldnt it have just been osteo?".
Here's Luke in the ER.
His first "IV":
They placed a gown on him when they decided that they were going to have him admitted to Texas Children's Hospital:
Here's Luke in the ER.
His first "IV":
They placed a gown on him when they decided that they were going to have him admitted to Texas Children's Hospital:
20 days before, 22 days after
Here are excerpts from our personal notes as we looked back 42 days from when Luke first seemed "sick".
June 3rd:
The last 2-weeks have been quite challenging.
Joyce and I have worked together, as best as we can, to manage Luke’s illness.
As we all know, care by multiple physicians and services only work seamlessly on TV. You don’t hear much about insurance, 5-week wait times for appointments, poor flow of data and patient information, or difficulty in treating a 2-yr old in absence of witnessed or observed injury.
That all being said, our God is a good God. We know that the God that brought Luke to us, will deliver us through this. We have been praying together and individually as strongly as we can be. We are on our knees in prayer for mercy and healing.
I am thankful for our parents and Jenny/Robin/Kids. I am also thankful for our loving family and friends here in Houston, as well as all over the world who have kept us and Luke in their prayers. I ask for continued prayer. We surely need it.
Something told me yesterday morning to think into the future, rather than staying stuck in this moment. Transform into thinking about “once Luke gets better…”, instead of “oh no, what’s happening? What is going to happen?” As best as I understand, we have physicians that are looking over Luke’s care from a medical standpoint. We have listened to the experience and advice of you all, and others we know. In most cases, everything we have heard has been applied to Luke.
As for his medical case, this is the full summary as I know it:
• Day One: Luke had sniffles prior to coming to Chicago (May19th). We considered it allergies. He had no high temperature. The week prior, we did note that 2 kids in his class had strep throat. During our trip, we did notice that Luke had a running nose and cough. In retrospect, I am almost certain that his nasal discharge was clear. Also, he had no “fever”, although we did not measure his temp.
• Day Five: We returned to Houston on Sunday, May 23rd.
• Day Seven: We took Luke to a pedi clinic on Tuesday, May 25th for fever and cough. Doctor saw a little pus behind ear and prescribed Bactrim x 10 days (since he is allergic to amoxicillin and ceftibuten)
• Day Ten: Luke graduated from toddler class on Friday, May 28th. In retrospect, he was not himself that morning. He seemed tired. He did jump up and down at school. 2 to 3 hours after that, at home, he complained of pain in foot. I thought he hit his foot on the chair. He did not want to walk. I had a nurse friend look at it and she said let him rest and check in the morning. There was no swelling, and although he was sleeping, her manipulation did not invoke pain response.
• Day Eleven: Took Luke to ER thinking he may have a sprained ankle or fractured toe. Xray was negative. Dr thought it may be osteomyletis so she admits to Texas Children’s Hospital. We spent the night there as more lab work is drawn and orthopedics look at Luke.
• Day Twelve: Luke is discharged from the hospital. He acts normal, with normal activity.
• Day Thirteen: May 31st, Memorial Day. He acts normal, with normal activity.
• Day Fourteen: Tuesday, June 1st. Luke woke up with foot pain. We went to primary doctor where she continues to voice some concern. More labs are ordered. She helps set up an appointment with an orthopedic doctor.
• Day Fifteen: Bone doctor at Richmond Bone and Joint Clinic says Luke needs a bone scan with radioactive solution to see the whole skeletal system.
• Day Sixteen: Thursday, June 3rd. Full bone scan, three-phase, is conducted at Memorial Hermann Hospital in the Texas Medical Center (Houston). Radiologist notes “something on the right heel”. Recommends an MRI of both feet.
• Day Seventeen: Friday, June 4th. The morning started at an infectious disease physician’s office, to whom we were referred by the bone doctor. MRI of both feet done at Texas Children’s Hospital after a good friend helped us get an appointment. Radiologist commented that “there seems to be something not right with his bone marrow”. “I would expect to see more fat in the marrow”. “I compared his pictures with a 2 year old with osteomyletis, and the pictures look different.” “I looked at the marrow of another 2 year old, and the pictures look different”. The radiologist tells me that he thinks we should go to the ER. He then asks me what my thoughts are. “I think we’ll go home”. In my mind, I had a thought that Luke will end up in the hospital for an extended period of time. Let me, Joyce, and Luke spend one more night together at home, in peace. It was a blessed night for me. My life and my love contained in our bedroom. The Lord only knew what the next day held.
• Day Eighteen: Saturday, June 5th. ID dr called us saying he read the MRI findings. “Possible leukemia, possible lymphoma, possible bone cancer, possible infiltrate”. He told us he spoke with the hematology/oncology fellow and they asked us to go to the TCH ER for work up and admission. Mummy and Pappa came to Houston. Alvin accompanied us to the ER. Christine came and joined shortly after.
• Day Nineteen: Sunday, June 6th. Stayed and the hospital for tests, IV fluids, etc. Mummy and Daddy arrived in Houston.
• Day Twenty: Monday, June 7th, morning: Bone marrow aspiration and lumbar puncture. Monday evening, June 7th, 2010, 10 days after Luke complained of the initial foot pain, the hematology/oncology team informed us that our sweet, precious child has Precursor B Cell Acute Lymphoblastic Anemia. They recommended that we initiate chemotherapy the following day. They informed us that Luke’s treatment would continue for 3 yrs and 3 months. Explained the risks of treatment. Explained the expected significant drop in immunity. No more school. Watch out for crowds. No contact with folks that are sick or were sick or were around sick people. They told us to basically “be smart”, “inituitive”, and “use common sense”. There is no need to live in a bubble. Also, mentioned great success in treatment (greater than 90% cure rate).
Luke’s Treatment for Precursor B Cell Acute Lymphoblastic Anemia
Luke started chemo on Tuesday, June 8th, 2010. His chemo regimen includes intrathecal cytarabine, intravenous (push) vincristine , intramuscular pegasparaginase, and oral dexamethasone.
In addition to the chemo meds, he is also taking the following routinely: bactrim liquid for infection prophylaxis, polyethylene glycol as needed for constipation, ranitidine liquid for improved stomach lining to prevent harm due to dexamethasone.
Wednesday, June 16, 2010 note by Tobi (Day 9 of chemo):
Luke is definitely getting better with taking his medicine. Yesterday, he had his 8th day IV Vincristine dose. We were pleased with the clinic set up, although it was a long day. We arrived at 1030 am and left at 330pm. That time was spent as follows: went to a room where 3 people attempted to place an iv line on Luke. Luke was fairly unhappy. He was saying no “meedles” and “go away”. It is sad to see what he must endure. I was praying for comfort and strength for him. They placed a good line in him. The doctor came to that room and spoke with us. She told us that the cytogenetics test determined that the subtype of Luke’s cells was the type that was the most responsive to the medicines. That is truly what we were praying to hear. The doctor’s name is Michele Reddell. She will be our primary contact physician. We also spoke with the Social Worker. She was informative. Joyce had many questions, and we received many good answers. Luke may get an implanted IV port placed later, so he doesn’t need to go through the ordeal of a line placement every time we go for a clinic visit. The reason why they did not do this yet is because one of the chemos can cause clotting.
Next Tuesday, he gets another IV chemo dose, IT chemo (methotrexate), and a bone marrow aspiration. We will be there all day. God-willing, the meds are working. The bone marrow analysis should show “blasts” less than 5%. If that is true, then the therapy is working as planned. The following week, thatg number should go below 0.1% to determine if the therapy is working as planned.
Today, he had a bath, and had a slight bowel movement in the tub, so we sterilized the tub while I placed him in the shower to make him clean. He has been eating very well, but not drinking as much as we would like. We have given him 2 doses of laxative to help him clear the meds. He is very active with his mind, but has not yet walked. On the bed, he crawls a good amount. We are working on his ambulation.
Thursday, June 17, 2010 note by Tobi (Day 10 of chemo):
Joyce had work in the morning, and I had to go for a meeting at my new workplace. My parents were watching Luke. Mummy was 25% successful in giving Luke the meds. I came back at 945am to give the Dexamethasone. We skipped the Ranitidine. Luke ate a good breakfast and lunch and will eat a good dinner. He ate a good number of French fries. I actually bought some frozen fries so I can make them whenever he wants. Also, I can control the salt added, and it is baked not fried. He still likes them . Sadly, it seems like he complained more about leg pain today. Last night, he stood and he took some steps between me and Joyce. This afternoon, I was playing with him in the study, and he stood up and took 2 steps to me. This evening, a friend of Joyce’s stopped by to visit briefly. He brought Luke some cars, which he will eventually love, but he seems to be uncomfortable at this time (735PM). We have many things to specifically pray about over the next 5 nights: peace for all, strength for Luke, happiness for Luke, preparation for a new chemo on Tuesday (Intrathecal Methotrexate), preparation for the bone marrow aspiration and spinal tap on Tuesday, decrease or elimination of blasts in his body, pain relief and elimination, anointing of hands of everyone caring for Luke, from the iv line placement to the anesthesia to the administration to the removal of EKG stickers. Continually praying to God for everything we need to make it through.
Sunday, June 20, 2010 note by Tobi (Day 13 of chemo):
Luke took my hand and walked across our bedroom 2 times today. Also, he took my hand and walked on the area rug in our living room. Cousins Lalu and Daisy (with Joshua) spent the night with us last. We had some great conversation and prayer. Mummy and Daddy, along with all of us, had a nice evening, and a good morning with breakfast this morning. It is a Happy Father’s Day. Our fathers are doing well, I am doing well, and Robin is doing well. Luke is a blessing. Our Father in Heaven continues to bless us. I proclaim His glory and cry out with thanks for so many things. When Luke seemed spiritless, God energized his spirit. When Luke lacked energy, The Lord gave him energy. When Luke needed to have bowel movements, he had them. No matter how nasty-tasting the medicine is, the Lord opens Luke’s mouth and allows the medicine to enter. Afterwards, Luke is back to being happy. Luke is standing up on the bed, praise God. Luke has walked, with help. Luke is encouraged to work. Our family friends Prasad Uncle, Kunjamma Aunty, and Sapna stopped by today. By profession, they are a PT, a nurse, and an OT. In addition to sharing encouragement and knowledge, they lifted us by sharing a couple of miraculous recoveries of their child and nephew. Tonight, Joyce is enjoying a night out with some girlfriends. That is a well needed “break”. I am happy that she has such loving and supportive friends. Yesterday, Joyce and I attended a wedding nearby. Cousins Alvin and Christine watched Luke. Luke had a blessed time, and we had a nice opportunity to spend time together. Tomorrow, a friend, Aunty Shubha and husband, and a pastor friend will come in the evening to spend time with us. In most cases, Luke stays in the bedroom. We have a big air purifier in the living room now, also. Joyce and I are prepared to accept a renewed commitment to our Savior. As Luke’s parents, we must do our part. We will do what we can, knowing that God will do what He must.
Tuesday, June 22, 2010 note by Tobi (Day 15 of chemo):
Tomorrow Luke receives his first intrathecal (in the backbone) methotrexate dose, so we are praying for so many things, from toleration of the medicine to the effectiveness of the medicine, to the placement of the medicine. Also, Luke is going to have another bone marrow aspiration, so we pray that he has no discomfort, that the procedure goes smoothly, and that all things are monitored and handled perfectly. God is in control. We pray for strength, peace, and comfort.
Praise God for many things. Luke is back to saying “I love you”. He hadn’t said that in a while. His birthday is approaching (on Friday). We pray that God gives us ideas on how to celebrate, but ultimately, we thank Him for our blessed child. Luke willing allows us to take his temperature, which is a blessing. He is continuing to be encouraged to walk. Tonight was the absolute easiest time I have had in giving him his medicine. Praise God and thanks to God! The pain that has kept him bedridden has been alleviated to the point that his spirit is high, and he is happy and active. We are thankful that the cytogenetic evaluation of the leukemic cells indicated that it a type that responds very well to the medicine. We are thankful for that. We pray that the Lord delivers Luke. In a time of need, before Luke’s first bone marrow aspiration, he had a transfusion. Thanks be to God for Luke’s tolerance of the blood transfusion, his great response to it, and also, thanks to those that donate blood. I never realized how precious that voluntary act is. As I was lying in the hospital bed with Luke, looking at the blood, I was filled with such gratitude, and a desire to give blood someday. With the spinal taps and bone marrow aspiration thus far, Luke has not had much discomfort, thanks to God. We pray that this mercy is continually offered. Tonight, the leukemia lymphoma society called us to arrange a $150 stipend. They offer this ever year. $150 may not seem like much too some folks, but not only does it help, it is a great blessing. We were spending nearly $20 per day in parking when Luke was in the hospital. When Luke was in the hospital, a group even went to Walmart and bought us slippers, a laundry basket, and a storage tote. The Ronald Mcdonald House had a family room set up in the hospital that offered us all types of comforts, including movies for Luke to watch, and snacks/drinks/food for us all. At this time, we feel that so many difficult and complex things in our life are somehow “made ok”. We are thankful for that. Finally, we are thankful that God has given strength to Mummy and Daddy. They have done so much of the work in the house, from cooking, to cleaning, to entertaining, to praying, to caring for Luke. It has been a great blessing to have their physical and emotional support here. In addition to that, the love and support offered by Mummy and Pappa and Jenny and Robin and our extended family and friends has helped so much. When we are dry, everyone who prays for us and checks on us, refill and re-energize us. Thanks to our Father for all of these blessings.
Tuesday, June 29, 2010 note by Tobi (Day 22 of chemo):
Thus far, the intrathecal methotrexate seems to have been the harshest on Luke. After his last treatment, last Wednesday, he was more uncomfortable and nauseous, than in previous treatments. Last Wednesday, he had his bone marrow aspiration as well. The original blast percentage in the bone marrow was 61% (5-10% was quoted to us while in the hospital; that was his peripheral blood). The goal for day 14 of chemo was to get that number in the bone marrow to “less than 4%”. Dr. Gladstone Airewele called us the next day to inform us that the sample they took was 0%. They did not find any abnormal cells. Praise God. This indicates that Luke is responding to his treatment.
Presently, Luke has been very willing to take his medicine. Praise God. He has gone to strong avoidance of opening his mouth, where we had to force the medicine down his throat, to him asking “where’s my medicine” or “I’m ready for my medicine”! That is so wonderful, and such a blessing. God continues to answer his needs and our needs. I prayed vigorously for him to “enjoy” his meds. While I don’t think he would pick meds over cake, it is so encouraging that it is easier to give him his meds.
Lately, we have been concerned about him sweating. He doesn’t have a fever, and he isn’t hot or warm, but his head is sweaty and his hair is sweaty. After some time in the past week, I believe that he shows this sweating when he is trying to have a bowel movement. None of the medicines he takes has “sweating” as a side effect, from what I have read. We will tell the doctor about this when we see him.
Luke has been gaining weight, and his face has filled out. It is expected for him to have a “moon face” with the steroids. On Sunday, his weight was 31.4 pounds. His pre-illness weight was 34 pounds.
Currently, I have a new routine for Luke. He wakes up and I take him to the bathroom, put him on my vanity, take a cup of water, a bowl, and brush his teeth and clean his tongue. Mouth hygiene is very important, as well as baths, and constant hand washing for him. I am happy to see that he has learned how to “swish and spit”, when I ask him to “swish and spit”.
Luke has been wearing a diaper, and has urinated through his clothes 6 out of 7 of the last days. I believe it has something to do with the amount of liquid he is drinking towards the end of the day, and throughout the night (he requests milk in the middle of the night). I have had to do several loads of laundry every day. Luke has also vomited somewhat frequently in the last few days as well. Twice yesterday. We will mention that to the doctor tomorrow. He did take a nap in his own bed yesterday. That is encouraging also. I am hoping he continues to be more comfortable doing that.
Today, Mummy and Daddy go back to Philadelphia. I am sure that this will be difficult for them, and I do believe that Luke will miss them a great deal. He has been very comforted with the love, attention, care, and support. They spent hours upon hours caring for him, changing him, feeding him, sitting with him, doing his laundry, and so many other things. The blessing of Luke’s four grandparents is so wonderful. Joyce and I love him dearly, and the love of his Appachens and Ammachys is also dear and awesome. The heartfelt prayers of Luke’s four grandparents mean so much to him and us. We are all so thankful for them.
Our friends from Philly, Sherine and John, have been with us for the past few days, and will be leaving on July 1st. It has been nice to have them, and Luke has definitely enjoyed seeing them. Once they depart, we will be “alone” for the first time since Luke’s diagnosis. I believe that we will use this time to better define and determine how our life is going to look, realistically, over the next several months at least. Next week, the doctors will tell how the next 2 years of treatment will be, and also, we will better assess our home situation, including work schedules.
Lalu mentioned to me that they may come back to visit on July 4th weekend. Also, our youth chaplain, Shiby Achen, visited last night and prayed with us. Shubha Aunty and husband, and their pastor friend came a few days back to pray for Luke. His Church has prayed for Luke. Our young families’ fellowship had a prayer chain for Luke last Friday, his birthday. Our parents and brother and sister continue to encourage us. Many friends and families also encourage us. It helps us so much. The outpouring of care and love has definitely been getting us through. God’s grace and mercy is seen every day. God continues to hear our prayers. We are thankful.
We celebrated his birthday at home. He wasn’t extremely happy, but was ok. We had a Go Diego Go theme. We did not invite anyone as we usually do. He blew out his cake candles, enjoyed the cake, we took pictures and video, he opened his gifts. Over the last few days, and especially yesterday, he has enjoyed the gifts. Yesterday, Luke and I played for a good amount of time. I introduced him to bowling. Also, we played with a Yo Gabba Gabba toy, and an alphabet game. It is also good to note that Luke has been walking more and more every day. Tomorrow, we go back to the clinic for more IV chemo. We pray for continued provisions from our Father God.
June 3rd:
The last 2-weeks have been quite challenging.
Joyce and I have worked together, as best as we can, to manage Luke’s illness.
As we all know, care by multiple physicians and services only work seamlessly on TV. You don’t hear much about insurance, 5-week wait times for appointments, poor flow of data and patient information, or difficulty in treating a 2-yr old in absence of witnessed or observed injury.
That all being said, our God is a good God. We know that the God that brought Luke to us, will deliver us through this. We have been praying together and individually as strongly as we can be. We are on our knees in prayer for mercy and healing.
I am thankful for our parents and Jenny/Robin/Kids. I am also thankful for our loving family and friends here in Houston, as well as all over the world who have kept us and Luke in their prayers. I ask for continued prayer. We surely need it.
Something told me yesterday morning to think into the future, rather than staying stuck in this moment. Transform into thinking about “once Luke gets better…”, instead of “oh no, what’s happening? What is going to happen?” As best as I understand, we have physicians that are looking over Luke’s care from a medical standpoint. We have listened to the experience and advice of you all, and others we know. In most cases, everything we have heard has been applied to Luke.
As for his medical case, this is the full summary as I know it:
• Day One: Luke had sniffles prior to coming to Chicago (May19th). We considered it allergies. He had no high temperature. The week prior, we did note that 2 kids in his class had strep throat. During our trip, we did notice that Luke had a running nose and cough. In retrospect, I am almost certain that his nasal discharge was clear. Also, he had no “fever”, although we did not measure his temp.
• Day Five: We returned to Houston on Sunday, May 23rd.
• Day Seven: We took Luke to a pedi clinic on Tuesday, May 25th for fever and cough. Doctor saw a little pus behind ear and prescribed Bactrim x 10 days (since he is allergic to amoxicillin and ceftibuten)
• Day Ten: Luke graduated from toddler class on Friday, May 28th. In retrospect, he was not himself that morning. He seemed tired. He did jump up and down at school. 2 to 3 hours after that, at home, he complained of pain in foot. I thought he hit his foot on the chair. He did not want to walk. I had a nurse friend look at it and she said let him rest and check in the morning. There was no swelling, and although he was sleeping, her manipulation did not invoke pain response.
• Day Eleven: Took Luke to ER thinking he may have a sprained ankle or fractured toe. Xray was negative. Dr thought it may be osteomyletis so she admits to Texas Children’s Hospital. We spent the night there as more lab work is drawn and orthopedics look at Luke.
• Day Twelve: Luke is discharged from the hospital. He acts normal, with normal activity.
• Day Thirteen: May 31st, Memorial Day. He acts normal, with normal activity.
• Day Fourteen: Tuesday, June 1st. Luke woke up with foot pain. We went to primary doctor where she continues to voice some concern. More labs are ordered. She helps set up an appointment with an orthopedic doctor.
• Day Fifteen: Bone doctor at Richmond Bone and Joint Clinic says Luke needs a bone scan with radioactive solution to see the whole skeletal system.
• Day Sixteen: Thursday, June 3rd. Full bone scan, three-phase, is conducted at Memorial Hermann Hospital in the Texas Medical Center (Houston). Radiologist notes “something on the right heel”. Recommends an MRI of both feet.
• Day Seventeen: Friday, June 4th. The morning started at an infectious disease physician’s office, to whom we were referred by the bone doctor. MRI of both feet done at Texas Children’s Hospital after a good friend helped us get an appointment. Radiologist commented that “there seems to be something not right with his bone marrow”. “I would expect to see more fat in the marrow”. “I compared his pictures with a 2 year old with osteomyletis, and the pictures look different.” “I looked at the marrow of another 2 year old, and the pictures look different”. The radiologist tells me that he thinks we should go to the ER. He then asks me what my thoughts are. “I think we’ll go home”. In my mind, I had a thought that Luke will end up in the hospital for an extended period of time. Let me, Joyce, and Luke spend one more night together at home, in peace. It was a blessed night for me. My life and my love contained in our bedroom. The Lord only knew what the next day held.
• Day Eighteen: Saturday, June 5th. ID dr called us saying he read the MRI findings. “Possible leukemia, possible lymphoma, possible bone cancer, possible infiltrate”. He told us he spoke with the hematology/oncology fellow and they asked us to go to the TCH ER for work up and admission. Mummy and Pappa came to Houston. Alvin accompanied us to the ER. Christine came and joined shortly after.
• Day Nineteen: Sunday, June 6th. Stayed and the hospital for tests, IV fluids, etc. Mummy and Daddy arrived in Houston.
• Day Twenty: Monday, June 7th, morning: Bone marrow aspiration and lumbar puncture. Monday evening, June 7th, 2010, 10 days after Luke complained of the initial foot pain, the hematology/oncology team informed us that our sweet, precious child has Precursor B Cell Acute Lymphoblastic Anemia. They recommended that we initiate chemotherapy the following day. They informed us that Luke’s treatment would continue for 3 yrs and 3 months. Explained the risks of treatment. Explained the expected significant drop in immunity. No more school. Watch out for crowds. No contact with folks that are sick or were sick or were around sick people. They told us to basically “be smart”, “inituitive”, and “use common sense”. There is no need to live in a bubble. Also, mentioned great success in treatment (greater than 90% cure rate).
Luke’s Treatment for Precursor B Cell Acute Lymphoblastic Anemia
Luke started chemo on Tuesday, June 8th, 2010. His chemo regimen includes intrathecal cytarabine, intravenous (push) vincristine , intramuscular pegasparaginase, and oral dexamethasone.
In addition to the chemo meds, he is also taking the following routinely: bactrim liquid for infection prophylaxis, polyethylene glycol as needed for constipation, ranitidine liquid for improved stomach lining to prevent harm due to dexamethasone.
Wednesday, June 16, 2010 note by Tobi (Day 9 of chemo):
Luke is definitely getting better with taking his medicine. Yesterday, he had his 8th day IV Vincristine dose. We were pleased with the clinic set up, although it was a long day. We arrived at 1030 am and left at 330pm. That time was spent as follows: went to a room where 3 people attempted to place an iv line on Luke. Luke was fairly unhappy. He was saying no “meedles” and “go away”. It is sad to see what he must endure. I was praying for comfort and strength for him. They placed a good line in him. The doctor came to that room and spoke with us. She told us that the cytogenetics test determined that the subtype of Luke’s cells was the type that was the most responsive to the medicines. That is truly what we were praying to hear. The doctor’s name is Michele Reddell. She will be our primary contact physician. We also spoke with the Social Worker. She was informative. Joyce had many questions, and we received many good answers. Luke may get an implanted IV port placed later, so he doesn’t need to go through the ordeal of a line placement every time we go for a clinic visit. The reason why they did not do this yet is because one of the chemos can cause clotting.
Next Tuesday, he gets another IV chemo dose, IT chemo (methotrexate), and a bone marrow aspiration. We will be there all day. God-willing, the meds are working. The bone marrow analysis should show “blasts” less than 5%. If that is true, then the therapy is working as planned. The following week, thatg number should go below 0.1% to determine if the therapy is working as planned.
Today, he had a bath, and had a slight bowel movement in the tub, so we sterilized the tub while I placed him in the shower to make him clean. He has been eating very well, but not drinking as much as we would like. We have given him 2 doses of laxative to help him clear the meds. He is very active with his mind, but has not yet walked. On the bed, he crawls a good amount. We are working on his ambulation.
Thursday, June 17, 2010 note by Tobi (Day 10 of chemo):
Joyce had work in the morning, and I had to go for a meeting at my new workplace. My parents were watching Luke. Mummy was 25% successful in giving Luke the meds. I came back at 945am to give the Dexamethasone. We skipped the Ranitidine. Luke ate a good breakfast and lunch and will eat a good dinner. He ate a good number of French fries. I actually bought some frozen fries so I can make them whenever he wants. Also, I can control the salt added, and it is baked not fried. He still likes them . Sadly, it seems like he complained more about leg pain today. Last night, he stood and he took some steps between me and Joyce. This afternoon, I was playing with him in the study, and he stood up and took 2 steps to me. This evening, a friend of Joyce’s stopped by to visit briefly. He brought Luke some cars, which he will eventually love, but he seems to be uncomfortable at this time (735PM). We have many things to specifically pray about over the next 5 nights: peace for all, strength for Luke, happiness for Luke, preparation for a new chemo on Tuesday (Intrathecal Methotrexate), preparation for the bone marrow aspiration and spinal tap on Tuesday, decrease or elimination of blasts in his body, pain relief and elimination, anointing of hands of everyone caring for Luke, from the iv line placement to the anesthesia to the administration to the removal of EKG stickers. Continually praying to God for everything we need to make it through.
Sunday, June 20, 2010 note by Tobi (Day 13 of chemo):
Luke took my hand and walked across our bedroom 2 times today. Also, he took my hand and walked on the area rug in our living room. Cousins Lalu and Daisy (with Joshua) spent the night with us last. We had some great conversation and prayer. Mummy and Daddy, along with all of us, had a nice evening, and a good morning with breakfast this morning. It is a Happy Father’s Day. Our fathers are doing well, I am doing well, and Robin is doing well. Luke is a blessing. Our Father in Heaven continues to bless us. I proclaim His glory and cry out with thanks for so many things. When Luke seemed spiritless, God energized his spirit. When Luke lacked energy, The Lord gave him energy. When Luke needed to have bowel movements, he had them. No matter how nasty-tasting the medicine is, the Lord opens Luke’s mouth and allows the medicine to enter. Afterwards, Luke is back to being happy. Luke is standing up on the bed, praise God. Luke has walked, with help. Luke is encouraged to work. Our family friends Prasad Uncle, Kunjamma Aunty, and Sapna stopped by today. By profession, they are a PT, a nurse, and an OT. In addition to sharing encouragement and knowledge, they lifted us by sharing a couple of miraculous recoveries of their child and nephew. Tonight, Joyce is enjoying a night out with some girlfriends. That is a well needed “break”. I am happy that she has such loving and supportive friends. Yesterday, Joyce and I attended a wedding nearby. Cousins Alvin and Christine watched Luke. Luke had a blessed time, and we had a nice opportunity to spend time together. Tomorrow, a friend, Aunty Shubha and husband, and a pastor friend will come in the evening to spend time with us. In most cases, Luke stays in the bedroom. We have a big air purifier in the living room now, also. Joyce and I are prepared to accept a renewed commitment to our Savior. As Luke’s parents, we must do our part. We will do what we can, knowing that God will do what He must.
Tuesday, June 22, 2010 note by Tobi (Day 15 of chemo):
Tomorrow Luke receives his first intrathecal (in the backbone) methotrexate dose, so we are praying for so many things, from toleration of the medicine to the effectiveness of the medicine, to the placement of the medicine. Also, Luke is going to have another bone marrow aspiration, so we pray that he has no discomfort, that the procedure goes smoothly, and that all things are monitored and handled perfectly. God is in control. We pray for strength, peace, and comfort.
Praise God for many things. Luke is back to saying “I love you”. He hadn’t said that in a while. His birthday is approaching (on Friday). We pray that God gives us ideas on how to celebrate, but ultimately, we thank Him for our blessed child. Luke willing allows us to take his temperature, which is a blessing. He is continuing to be encouraged to walk. Tonight was the absolute easiest time I have had in giving him his medicine. Praise God and thanks to God! The pain that has kept him bedridden has been alleviated to the point that his spirit is high, and he is happy and active. We are thankful that the cytogenetic evaluation of the leukemic cells indicated that it a type that responds very well to the medicine. We are thankful for that. We pray that the Lord delivers Luke. In a time of need, before Luke’s first bone marrow aspiration, he had a transfusion. Thanks be to God for Luke’s tolerance of the blood transfusion, his great response to it, and also, thanks to those that donate blood. I never realized how precious that voluntary act is. As I was lying in the hospital bed with Luke, looking at the blood, I was filled with such gratitude, and a desire to give blood someday. With the spinal taps and bone marrow aspiration thus far, Luke has not had much discomfort, thanks to God. We pray that this mercy is continually offered. Tonight, the leukemia lymphoma society called us to arrange a $150 stipend. They offer this ever year. $150 may not seem like much too some folks, but not only does it help, it is a great blessing. We were spending nearly $20 per day in parking when Luke was in the hospital. When Luke was in the hospital, a group even went to Walmart and bought us slippers, a laundry basket, and a storage tote. The Ronald Mcdonald House had a family room set up in the hospital that offered us all types of comforts, including movies for Luke to watch, and snacks/drinks/food for us all. At this time, we feel that so many difficult and complex things in our life are somehow “made ok”. We are thankful for that. Finally, we are thankful that God has given strength to Mummy and Daddy. They have done so much of the work in the house, from cooking, to cleaning, to entertaining, to praying, to caring for Luke. It has been a great blessing to have their physical and emotional support here. In addition to that, the love and support offered by Mummy and Pappa and Jenny and Robin and our extended family and friends has helped so much. When we are dry, everyone who prays for us and checks on us, refill and re-energize us. Thanks to our Father for all of these blessings.
Tuesday, June 29, 2010 note by Tobi (Day 22 of chemo):
Thus far, the intrathecal methotrexate seems to have been the harshest on Luke. After his last treatment, last Wednesday, he was more uncomfortable and nauseous, than in previous treatments. Last Wednesday, he had his bone marrow aspiration as well. The original blast percentage in the bone marrow was 61% (5-10% was quoted to us while in the hospital; that was his peripheral blood). The goal for day 14 of chemo was to get that number in the bone marrow to “less than 4%”. Dr. Gladstone Airewele called us the next day to inform us that the sample they took was 0%. They did not find any abnormal cells. Praise God. This indicates that Luke is responding to his treatment.
Presently, Luke has been very willing to take his medicine. Praise God. He has gone to strong avoidance of opening his mouth, where we had to force the medicine down his throat, to him asking “where’s my medicine” or “I’m ready for my medicine”! That is so wonderful, and such a blessing. God continues to answer his needs and our needs. I prayed vigorously for him to “enjoy” his meds. While I don’t think he would pick meds over cake, it is so encouraging that it is easier to give him his meds.
Lately, we have been concerned about him sweating. He doesn’t have a fever, and he isn’t hot or warm, but his head is sweaty and his hair is sweaty. After some time in the past week, I believe that he shows this sweating when he is trying to have a bowel movement. None of the medicines he takes has “sweating” as a side effect, from what I have read. We will tell the doctor about this when we see him.
Luke has been gaining weight, and his face has filled out. It is expected for him to have a “moon face” with the steroids. On Sunday, his weight was 31.4 pounds. His pre-illness weight was 34 pounds.
Currently, I have a new routine for Luke. He wakes up and I take him to the bathroom, put him on my vanity, take a cup of water, a bowl, and brush his teeth and clean his tongue. Mouth hygiene is very important, as well as baths, and constant hand washing for him. I am happy to see that he has learned how to “swish and spit”, when I ask him to “swish and spit”.
Luke has been wearing a diaper, and has urinated through his clothes 6 out of 7 of the last days. I believe it has something to do with the amount of liquid he is drinking towards the end of the day, and throughout the night (he requests milk in the middle of the night). I have had to do several loads of laundry every day. Luke has also vomited somewhat frequently in the last few days as well. Twice yesterday. We will mention that to the doctor tomorrow. He did take a nap in his own bed yesterday. That is encouraging also. I am hoping he continues to be more comfortable doing that.
Today, Mummy and Daddy go back to Philadelphia. I am sure that this will be difficult for them, and I do believe that Luke will miss them a great deal. He has been very comforted with the love, attention, care, and support. They spent hours upon hours caring for him, changing him, feeding him, sitting with him, doing his laundry, and so many other things. The blessing of Luke’s four grandparents is so wonderful. Joyce and I love him dearly, and the love of his Appachens and Ammachys is also dear and awesome. The heartfelt prayers of Luke’s four grandparents mean so much to him and us. We are all so thankful for them.
Our friends from Philly, Sherine and John, have been with us for the past few days, and will be leaving on July 1st. It has been nice to have them, and Luke has definitely enjoyed seeing them. Once they depart, we will be “alone” for the first time since Luke’s diagnosis. I believe that we will use this time to better define and determine how our life is going to look, realistically, over the next several months at least. Next week, the doctors will tell how the next 2 years of treatment will be, and also, we will better assess our home situation, including work schedules.
Lalu mentioned to me that they may come back to visit on July 4th weekend. Also, our youth chaplain, Shiby Achen, visited last night and prayed with us. Shubha Aunty and husband, and their pastor friend came a few days back to pray for Luke. His Church has prayed for Luke. Our young families’ fellowship had a prayer chain for Luke last Friday, his birthday. Our parents and brother and sister continue to encourage us. Many friends and families also encourage us. It helps us so much. The outpouring of care and love has definitely been getting us through. God’s grace and mercy is seen every day. God continues to hear our prayers. We are thankful.
We celebrated his birthday at home. He wasn’t extremely happy, but was ok. We had a Go Diego Go theme. We did not invite anyone as we usually do. He blew out his cake candles, enjoyed the cake, we took pictures and video, he opened his gifts. Over the last few days, and especially yesterday, he has enjoyed the gifts. Yesterday, Luke and I played for a good amount of time. I introduced him to bowling. Also, we played with a Yo Gabba Gabba toy, and an alphabet game. It is also good to note that Luke has been walking more and more every day. Tomorrow, we go back to the clinic for more IV chemo. We pray for continued provisions from our Father God.
The Beginning
On Monday, June 7th, 2010, we began a new journey in our lives. A journey that begins with Luke's diagnosis of Pre B-cell Acute Lymphoblastic Leukemia. 18 days before his 3rd birthday. Our child, who joined us in our 7th year together, and claimed our hearts and souls, would take his first step towards recovery on Tuesday, June 8th, with his 1st dose of chemo. The first day in a 3 year, 3 month treatment plan. We lift our child up to our Father God every minute of every day, praying for healing and recovery. Through it all, we thank God and praise Him. Through Him, all things are possible. We pray to be drawn near, stay focused on Him, even through storms around us...especially through storms around us.
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