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.