Sunday, July 15, 2007

Keeping Mum

Last Wednesday, July 11, I sent out this email to almost everyone in my address book:

Please pray for Joseph Nichole “Nichi” Delgado

Your unwavering concern and help have kept Nichi alive. But once again, my whole family and I are requesting that you continue praying with us for the recovery of the youngest member of our family, Nichi.

He has been battling Acute Lymphocytic Leukemia since 2001. He has undergone chemotherapies and radiotherapy since then. Last year, he survived complications due to his weakened immune system. His undaunted love for life allowed him to get through his few days’ stay at the ICU, several dosages of strong antibiotics, a seizure attack, collapsed veins, diarrhea and a threat for sepsis. Slowly but surely, he worked his way to regaining his strength with the help of everyone who’s been so generously supporting and praying for him. It truly is a miracle that Nichi was almost in perfect health come December last year.

But this year has not been so easy for him. January of this year, his left eye started losing its vision. A retina specialist suspected retinal detachment and leukemic infiltration. Nichi eventually completely lost his left eye’s vision but he never let that get in the way of him pursuing the things he loves to do like drawing.

Nichi has been in and out of the hospital for check ups and chemo sessions which, as his doctors say, are done not for treatment but for palliative measure—he has been receiving chemo drugs to help alleviate his situation but not necessarily to cure him. His attending hematologist along with a number of doctors who have reviewed Nichi’s case recommended that he undergo a bone marrow transplant (BMT). Although the chances of survival for such procedure was below 50%, our family have tried our best to pull strings and raise funds for the said BMT so that he can have it as soon as his body is ready for a more radical treatment.

This May, Nichi’s birthday month, another obstacle arose. He lost full control of his left facial muscles. The doctor’s said that he had Bell’s Palsy and ordered that he undergo rehabilitation three times a week. Nichi wasn’t spared of the pains of his newly acquired ailment even on his special day. We had to rush him to the hospital the day after his birthday to seek the doctor’s assistance in managing his pain.

Later in June, he was confined at the Philippine Children’s Medical Center (PCMC) due to pneumonia that was barely there. Just the same, he received strong antibiotics to avoid last year’s event from repeating itself. He was discharged after a four-day stay at the hospital, with clear lungs but he hasn’t been OK since.

Nichi has been spending the past days sleeping. The strength of his body has been progressively deteriorating. He can now barely move his left extremities. The right side of his body is becoming just as weak. He constantly suffers joint pains. And his ears have been betraying him, too. He’s been having trouble hearing.

The endocrinologist who analyzed the results of Nichi’s blood tests done during the first day of this month said that his liver and other related organs are normal. Last week, Nichi underwent an electromyography (EMG) to find out if there are any problems with his nerves which might be causing his weakened muscles. The initial results are not very promising. Yet we hope that the neurologist who will check Nichi this coming Friday, July 13, will shed light and hope with regard to Nichi’s present situation.

As my dad once said, “Nichi is a nice 13-year old kid—happy, playful, kind, intelligent, God fearing and God loving.” And indeed he is. He dreams of so many good things to achieve in the future, including being the godfather of our future niece. It tears our hearts seeing him not able to live the life he used to live, the life he deserves to live. It is even worse that we can’t help him during the occasional attacks of pain in various and random parts of his body. All we are reduced to is to cling to the power of prayers.

We are calling upon you and everyone within your circle of friends to please continue to pray with us so it will be heard in the heavens up high. God heard us many times before. We strongly believe that He will hear us again this time—for JOSEPH NICHOLE “NICHI” L. DELGADO.

Sincerely yours,
Tyrene Delgado



attached photos:

2006-08-29 At the ICU



2006-12-16 So lively at our sister's wedding



2007-04-27 Winning 1st place at a drawing contest



2007-05-10 Smiling after a rehabilitation session for his Bell's Palsy



2007-05-12 Nichi's Birthday which he later spent crying because of the pain he had to endure



2007-05-13 Spending his 2nd day at being 13 years old at the hospital



2007-07-01 Wheelchair-bound, he waits for the endocrinologist





I postponed posting it here to protect, I guess, my six months pregnant sister living in Singapore. But since, she has the right to know and she now knows about the devastating news about our youngest brother, I am posting my letter here.

For those who ask, Nichi is still spending most of the day sleeping. This morning, he complained that his spinal column hurts. We try to talk to him whenever he’s conscious even if we are having a hard time communicating because, as I have said in the letter, he can hardly hear.

Nichi can’t get up on his own, so we have to lift him up whenever he needs to sit. He eats 3-5 spoons of food. Sometimes he does this only once a day. Something big is really wrong with him. His poor appetite is a major indication that he is not fine.

The neurologist said that based on Nichi’s EMG, Nichi’s nerves have already been damaged, either by his six years of chemotherapy and radiation therapy or by the numerous leukemic cells that have infiltrated his central nervous system. And just as what a number of doctors have said, the neurologist relayed that the damage in Nichi’s body is more likely irreparable. Unfortunately it happens to be progressive so only God knows what awaits in the coming days.

Nichi is presently at home. He has vitamins for his nerves and pain relievers but that’s mainly it. No more chemo drugs for him from here on, I guess.

Honestly, I didn’t know what the word “palliative” meant until my dad told me that Nichi’s pseudo treatments were, in reality, palliative. I somehow knew for a while now that Nichi will no longer be well—that he won’t get the normal life he has been fighting for for six years.

I kept shut. It isn’t the news I wanted to tell people about. I kept shut because I was silently hoping that the inevitable won’t happen any time soon.

Just the thought of bad things happening to Nichi gave me nightmares, one of which I have shared in one of my entries.

It made every second with Nichi more precious than ever.

A lot of things are easier said than done. And I am afraid that Nichi, his unforgiving disease and the predicament our whole family is in right now, have just placed us in a tag-of-war of emotions and rationality. And as I keep telling those who have been asking how we are, “hindi siya madali sa totoong buhay.”

We’ve been through hundreds of tough times yet this one out-toughs them all.

At this point, I guess, all of us are just praying that it be done whatever is best for Nichi. And whatever happens, he will be loved, not just by us, his immediate family, but also by everyone whose lives Nichi touched.

2 comments:

dessie said...

hi tye!

i am continuously praying for nichi.

i was updating my blog and the topic's so timely..i browsed the Web and i spotted on this Website re: bone marrow transplant. you may call H.O.P.E office at (02)924-0680. i am currently in Kuwait and this is all I can do for now.

God bless!

Jim said...

I read your story with such a heavy heart. I had to hold my tears back. I am so touched by your post and the suffering that you, your brother and family are going through.

I will most definitely pray for him and for all of you. I wish there was more I could do. Your brother is an extraordinary soul. He has gone through a lot--certainly a lot more than what I have ever gone through in my own life of 55 years.

As a father, I can only empathize with what your dad is going through as he wonders about what the fate of his beloved son will be. He must love him so much even as he may be tempted to wonder at times where/what God's love is in all this. It is hard to see God in suffering but I have learned to trust that He is there always. I am sure you have more to say about this than I can.

I just want to say that although we are not related, I suffer with you as a fellow human being. I just hope that even in some small way, that is a consolation.

God bless you, your brother and your family.