59 days. Still no clear diagnosis.
52 days in Manila, 7th day in Singapore.
Caitie is still in ICU, though vital stats are normalizing, shes having a difficult time urinating, she has water retention and fever.
Then ruled out
Considered Leukemia again, Lymphoma and Intestinal Bowel Disease.
Then ruled out.
Formally Diagnosed with modified HLH
Then ruled out.
Considered Lymphoma, LCH
Then ruled out.
Formally diagnosed with LAD (Lymphocyte Adhesion Deficiency)
Then ruled out.
Considered Lymphoma again
Formally diagnosed to MDS (Myelodysplastic Syndrome)
Then ruled out.
Formally diagnosed again with LAD
Then ruled out.
And now we are back to Leukemia.
Still waiting for the official results.
33 official doctors in Manila
3 different hema-onco, 2 hema, 4 gastro, 2 infectious diseases, 3 immunologist, 1 geneticist, 5 dermas, 1 rheumatologist, 2 intensivists, 1 general pedia, 2 Hepta, 2 nutritionist, 1 rehab, 2 pedia surgeons, 2 anesthesiologists.
I lost count of all the official doctors onboard here in Singapore.
How many times have I cried out to God? How many times have I surrendered? How many times have I accepted the disease? How many times have I persevered? How many times have I accepted the difficult path of treatment? How many times was my hope brought back? How many times have I rejoiced? How many times was I brought back to the same diagnosis then cleared up then diagnosed back then cleared and diagnosed back again. How many times was our hearts crushed? How many times have we lost our sanity?
September last year, we started to notice that weird insect bites would just appear on Caitie’s legs and arms. A lot of pedia dermas would say that it was simply a bad reaction to an insect bite. We were given antihistamines and topical creams. I wanted to get help from an immunologist because I wondered by it seemed as if Caitie’s immune system was low. He suggested to have Caitie tested for TB. Her skin showed a positive exposure to it yet her lungs was clear.
A routinary cbc test was done and it reflected that her blood was a bit deranged; high wbc, low platelet, low hemoglobin and Leukemia was considered then ruled out. We sought more wisdom from a derma and rheuma doctor and was diagnosed with erythema nodosum. The skin’s reactive to an infection; most likely Tuberculosis. So we started with her TB meds. We were given 6 weeks to monitor her improvement otherwise an excision biopsy of the skin nodule would be done. 2 weeks in the medication and it didn’t improve and was becoming more aggressive and more frequent abdominal pain and she was always warm to touch.
Come December 20, my mother-in-law passed her life here on earth. Caitie’s lesions was getting worse and showing on her face and the abdominal pain was just getting worse.
We celebrated Christmas missing Nana and we started the first day of 2016 in the emergency room for a series of blood tests. As always, Caitie was a trooper and went through all of it. We went home right after and come January 2, she formally got admitted. Doctors suspected Leukemia and a series of tests, a ct scan and a bone marrow aspiration + excision skin biopsy was done. Both resulted negative for Leukemia cells though atypical and immature cells were seen but not enough to conclude that it was. Our health card provider rejected our admission because our working diagnosis was of a dreaded disease. We chose to be discharged because of the bill.
A few days after, a scheduled colonoscopy was set to rule out IBD. Caitie was on bowel prep for 4 days and got admitted 4 days after being discharged from our first admission. The night before her scheduled colonoscopy, a routinary cbc was done. Her platelet was low, hemoglobin was low and wbc was high. A packed RBC and platelet transfusion was administered. That same night, we were diagnosed with modified HLH. I read up on it and I couldn’t believe what I was reading. Kids only had a life span of 2 months upon being diagnosed of this, yet doctors seemed hopeful and it felt as if it wasn’t terminal and was treatable. That a patient with a similar case + thalassemia is doing well now after 6 weeks of steroids treatment and didn’t come back anymore. So the same was expected with Caitie.
The day after, colonoscopy was cancelled and a different doctor said that it wasn’t HLH. So we sought after a different doctor’s opinion. Indeed HLH was ruled out and they wanted to proceed with a scheduled Lymph node biopsy. 3 days after being discharged, we got Caitie admitted in a different hospital. The biopsy was postponed because a routinary blood test showed blasts so a BMA was a better path because they expected a lot of Leukemia cells. Yet results were negative. Same as that of the other hospital. Her bone marrow was intact yet outside of it, there’s a reaction yet they didn’t know what was causing the reaction. So we proceeded with a lymph node biopsy and 1st batch of immunostains showed negative, 2nd, 3rd, 4th plus a series of tests was simply negative and normal. Yet the main question was, what was causing her platelet to go down? Her wbc to go up and her hemoglobin to go down?
Caitie’s diarrhea got worst during this time. At times in a 24hour cycle, she would go 15 times to the toilet and expel 500ml-800ml of poop in a single time. In just 2 days, she lost a lot of weight, got depressed and the battery of tests didn’t stop.
When an 2nd round of immune deficiency panel was done and some of the results showed that it was low, the team diagnosed Caitie with LAD. We took in IVIG via oral 2x yet her diarrhea continued.
We went back to the other hospital to continue build up nutritionally, and treat her diarrhea yet it wasn’t getting any better. Leukemia was again brought back, then ruled out again then brought back again. We were already having 15 platelet transfusions and around 6 packed rbc transfusions. A scheduled colonoscopy was again set. So Caitie was on fasting again for bowel prep for 3 days. The night before the colonoscopy, it was again cancelled because the doctor wasn’t comfortable to proceed with the low platelet count and she wasn’t confident that any relevant output will be seen from the procedure.
We were on a dead end and our bill was 3x our savings. We decided to ask help financially and fly to Singapore. Caitie was pumped up with blood, platelet and everything she needed for the flight. It was the most difficult flight in our life. But we saw God’s goodness through the kind staff of Philippine airlines who have been following caitie’s story.
Upon arriving, things went smoothly and a battery of tests was done and admission was immediate. LAD was primarily considered but with CD18 and CD11 rechecked and undamaged, it was formally ruled out.
Now we are on our 6th day in Singapore and things are pretty fast compared to Manila’s technical support. We are placed back with the working diagnosis of MDS. A rare leukemia that affects the bone marrow. We are in the ICU but hopefully we get to go back up in the regular ward. We have to wait over the weekend again and still unsure if a diagnosis will be formal by Monday.
We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. 2 Cor 1:9
See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland. Isaiah 43:19
I have lost count on how many times our hearts kept on breaking apart and collapsing with every diagnosis, lack of diagnosis and prolonged pain in Caitie’s overall being.
To be honest, what mostly challenged me and was the most difficult to do was to have the discipline to love God above everything else.
Will I still love God even if I loose my daughter to death?
Will I still love God even if we receive a malignancy diagnosis?
Will I still love God even if we receive a lifetime disorder?
Will I still love God even if I receive repeated diagnosis of leukemia then be taken back then be brought back again, then be taken away and be back again and again?
Will I still love God even if it seem as nothing is happening?
Will I still love God even if Caitie’s blood results do not yield a good one?
Will I still love God even if there are complications?
Will I still love God even if we are drained financially?
Will I still love God even if we do not know where we are headed?
Will I still love God even if we feel hopeless?
Will I still love God even if I see Caitie’s body and spirit dry up?
Will I still love God even if we reach months where we still have no diagnosis?
Will I still love God even if I thought that He delivered us from malignancy and be wrong and be given malignancy again?
Will I still love God even if we have lost the glow in our eyes, the warmth of an embrace and loosing the sound of laughter?
Will I still love God even if I feel that nothing is happening?
Will I still love God even if I may have possibly interpreted His word differently?
Humanly speaking, I don’t know how. But every second of every circumstance, I try to choose to love Him above everything else. I realized that its not a one time decision. Its every blink of an eye. Right now, the best encouragement I get are the promises of His word.
I choose to love God by being thankful in everything and trusting His heart that He is a good God.
The pain to go through something unknown is literally walking on water. But just like Peter, I just need to continue to believe and focus my eyes on who Jesus is. Who He is and not who I am. That the moment I doubt, I will sink.
His love is still undeniable
His love sustains
We have been on this clueless journey for 59 days already and the Lord sustains Caitie without receiving any treatment. He continues to sustain her confidence and still like the hospital despite so going through so many tests and extractions and being tested for everything that causes any of her symptoms. He sustains her with not bleeding despite a platelet of only 3 with a normal range of 150-400k. Despite having a deranged blood picture, she defies all the markers and is still able to tell us what she wants, stands up, tries to walk and has the urge to stop and release her bowel and urine even back when she would have 10-18 toilet visits in a day and 600-800ml volume per toilet time. And now despite having water retention, she is still stable
His love is secure and overwhelming
Despite almost being empty with our savings, we decided to be faithful to tithe 122,000 pesos to our c. We were tempted to simply use the money for hospital payment, yet we gave cheerfully what we had left. 2 days after, the Lord exactly replaced the 1.2 million cost we had then with an exact equivalent of 1.2 million in just 2 days. He continues to provide for our financial need and its one of the least things we worry about. Even in a foreign land, strangers come in and help! Though at the moment we are already at 3.5million in expense, God continues to be faithful as we survive with His provision.
His love is limitless
He brings in strangers to donate blood as needed and even have a person donate blood for platelet apharesis and pay for the procedure himself at 30,000 pesos. Seeing clients, people we haven’t seen in a long time, strangers just come in give a part of themselves for Caitie. Mommy groups coming together to pull in buckets of fresh breastmilk. Even coming in to pump in the room and provide freshly expressed milk for Caitie. People offering their homes for us to stay here in Singapore, cooking home cooked meals for us to eat. Family and people giving up their time, talents, efforts to come up with different fund raising activities such as a music gig, a photo marathon, a garage sale, a make up class, an art class, 3 movie premiers, marathons, dance classes and the list goes on. He brings in strangers to take their time to visit us even for just a minute to pass on a gift they have carefully thought of, bought and travelled far for Caitie. He uses Caitie to bring together people, to bring efforts together, for the best in people to come abound.
His love is united
Everyday we receive messages from people around the world! Messages of encouragement, stories of their own life battles, and messages that our journey has been helping build their relationship with God.
0 So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. 11 As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning.12 When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. 13 So Joshua overcame the Amalekite army with the sword.
There are days we feel spent, tired, emotionally, physically and spiritually. But when we see the people of God like of Aaron and Hur move wherever we are, reach out to us, pray for us unceasingly, our hands our lifted. We have never felt alone here in Singapore, our doctors knew about Caitie’s case already even before we came as friends have been sending them Caitie’s files. Nurses of Caitie know her already through facebook, strangers have been offering us homes to stay in, some offer to laundry our clothes, our hospital room has been overflowing with toys for Caitie, some also come to share in our tears and just offer a shoulder to cry on or a warm embrace.
At times I would ask God why he had to bring Caitie’s courageous journey here in Singapore. Then in ICU He gave us this verse:
He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”
The Lord Almighty is with us; the God of Jacob is our fortress.
His love is on time
When we need it the most, He sends in the right people to just want to pray for us with the exact message that we needed to hear. The bible stories Caitie picks out to read serve as the exact encouragement we need for the moment. The stories in the bible is exactly the affirmation we needed at the very moment. Abraham surrendering Isaac during our first encounter with Leukemia, the list of blessings and reminder to be strong and courageous in Deuteronomy, The crossing of the Jordan river to claim the City of Jericho without spears but by simply keeping silent and walking around the city and for it to tumble down without effort. With Gideon wining a battle with less number of soldiers and without spears again. For David killing goliath with only a stone and a sling in just one shot. For Ruth’s faithfulness, For Hannah’s heart to be honest, dedicate her child’s life and humility to ask help from others, For Samuel in choosing Saul.
His love is illogical
He has been the God who made deaf people hear with putting a finger in that person’s ear, to put mud in the eyes of a blind man to see, to let a man with leprosy just go to the river to wash. We cannot understand His ways but its because of these that we know that He is God. He defies logic. At platelet 3, Caitie isn’t bleeding, at the ICU but she is restored, at hemoglobin 5.7, she walks and paints. With only breastmilk for a week, Caitie was sustained despite bowel problems. With symptoms that say it is a certain disease, her blood picture for that confirmatory test would show that its normal.
His love is whole and complete
Because of this journey, our family has grown to be confident in our faith and to encourage each other through scripture. To be more comfortable to communicate without the fear of hurting each other but to say the truth in love and respect.
His love is light
I realized that surrendering is never a one time decision. It should be constant. That there would mostly be minutes when you feel high then low but all you have to do is to process it, focus on Jesus and walk on water. I realized that I should not live on the past victories but that I have to renew my relationship with Jesus every single time of everyday. That whenever I dwell, plan and rationalize things, it just gets worse and I become a worse version of myself.
I realized that to surrender is to be the best version of yourself. To see the good in all things, to be thankful and to trust that God will not answer your prayer but to trust Him is telling Him that you trust His plan and that’s what you would like to have. That it is His problem to carry and defend. You just have to be the best version of yourself for Him.
Much like a construction worker and an architect. To trust the plans of the architect but the plans are only good when the construction worker follows it and believes that the architect has a vision and carefully thought about the foundation, interior and exterior. The plan of the building requires the time, skill and best of the construction worker.
God is indeed a great script writer and story teller. We are simply actors aiming to have the best actor title. To give our best and be the kind of character that the script writer envisioned when He wrote the lines and the story. That the director has a vision of what he wants to happen. So even if you don’t see how the director will put together the scenes, You trust Him because He knows when the climax would be, how best to highlight it and He knows the kind of ending that the movie deserves to have a best screen and script award. Actors who give their best and understand their role and character makes the story of the script writer and the vision of the director to be a success. Without the actor, the story would not have its effective reach to the audience.
This journey has tested our faith and belief that God indeed will see us through all of this…that there is indeed a rainbow at the end of the storm. He has said in His word that as children of God, “If you believe, you will receive whatever you ask in prayer.” Matthew 21:22
If we have asked for healing for complete healing for Caitie, why would we settle for a disease? We always surrender this everyday.. we have knelt on the beach, in the toilet, on hospital couches, floors and whenever we close our eyes before we sleep.
Surrendering is not just letting go of what you want to happen. Surrendering is to throw the problem to God and to be the best version you can be for Him. Surrendering is not wanting Him to answer your prayer, but that you trust His plan and that’s what you would rather have.
So tomorrow is another day to be clueless about. Another day to possibly not have a diagnosis or possibly to receive a diagnosis that we do not want to have. Another day to choose God’s will and surrender any expectations. But it doesn’t matter because all I have to do is to be the best version of me tomorrow, hold on to who God is, ask according to His promises and God will deal with the rest of the day.
“Lord, problema mo na yan! You are a God who is good, who wants to heal, who is faithful, who loves your children, who is omnipotent and who wants your children to have an abundant life. So let Your will be done because that it exactly the perfect one for me.