Sami Lahoud

I apologize for the late update, I had to spend 10 days at MDA since I was running fever. They were unable to pin-point the exact reason behind my fever, thus bathed me with all sorts of antibiotics, anti-viral and anti-fungal drugs.  When they finally got rid of the fever (and everything else with it), I was released 4kgs lighter (yes kgs not lbs) … I tell you, this is the way to lose weight if you are desperate to do it ;)- – – when I arrived home, Jacqueline had a large tabouleh bowl for me with fresh french fries … I started salivating all over it and immediately dug into it … then stopped ! ugh … it all tasted like the crepe paper I used to munch on in kindergarden. blah !  Jacqueline immediately tasted the food and commented that it was just fine.  I disagreed and decided to hit the sack since I was very tired. Later that evening, she prepared a delicious laban Immo dish for me … once again, I salivated all over it and immediately dug into it … then stopped ! ugh … I am telling you, it all tasted like the crepe paper I used to munch on in Kindergarden … however, the kids were home by then and they all commented that the food tasted great … hmm … I then decided to contact Dr. Raad 😉 and shared with him the fact that I had no taste buds!!! He then balanced my drugs and removed the one that was killing my taste buds … and voila, within 24 hrs I was back tasting the delicious food of her highness Jacqueline Agha !  mmm, mmm, mmm … no wonder I lost so much weight and was complaining about the food I was getting (lol) – the antibiotic in question was Mynocycline (if you google mynocycline and taste buds, you will get a good number of patients complaining about losing their taste buds while on this medication – lol).

I am still on the miracle drug AC220. It has great reviews on the web. They believe that it might be “THE” drug that will cure Leukemia/AML/FLT3.  To date, I still have zero blast in my blood. They are planning a T-lymphocyte transfusion from my original donor. It should be non-eventfull. However, the next mile stone is my upcoming Bone Marrow Aspiration scheduled for Thursday the 27th.  ouch ! 😉

With that said, we still have full confidence that our Lord is still in full control. Praise His Holy Name !

I thank you all for your prayers and support !  … cannot thank you enough …

Merry Christmas !

In His Grip

Sami

My blasts (Leukemia Cells) are still at 1% in my blood,which is a reflection that I still have some blast in my bone marrow. I had a bone marrow aspiration last week and it reflected an 8% blast, which is a blessing since it was at 85% in my bone marrow before starting the new medication.  At this stage the physicians are really happy with the results and believe that the medication is working great.  We are currently waiting on my blood counts to start ramping up to their normal levels.  Once that happens and my blasts are “crushed”, then I will be considered in complete remission … hopefully soon.

As a side note, I was cleaning one of my packed drawers a few days ago and ran into a very old, yet still valid, Lahoud Dating Application that I had made when boys started showing interest in Wadad and Jeanette (ya yes a long time ago).  I am attaching it for your enjoyment and use  …  I am sure that Jad will use it “as-is” for Joya, especially that it already has the Lahoud name on it.  🙂

Still In His Grip
Sami

This blog entry is a “Show and Tell”. 🙂
I am attaching a link to share with you the current status of my Bad Blasts.
https://samilahoud.com/wp-content/uploads/2012/10/ac220-graph-lahoud1.jpg

In less than 4 weeks on the new medication code-named AC220, my bad blasts have dropped from 78% all the way down to 1%! – someone has been praying 🙂 My physician is ecstatic since I have contributed great results to the study.  At this stage, I am one of his best Guinea Pigs.

In this picture below, I look mighty fine after consuming my dose of AC220.
https://samilahoud.com/wp-content/uploads/2012/10/best-guinea-pig-on-ac220-study.jpg

AC220 is a targeted medication for AML patients with FLT3 Mutation (the most aggressive one). It is as clear as water, tasteless and so far, has very minor side effects. I take one tablespoon at home daily and voila, I am done for the day.  Currently my blood counts are down and I have been requiring platelets twice a week, however, I was informed that once my blasts are gone, then my blood counts will recover accordingly.  PTL !

On a sad note, I met a lot of FLT3 patients that have not qualified for AC220.  I am so blessed to have qualified fairly quickly. What a blessing it is to be able to bypass a nuclear dose of Chemo … AC220 has been a piece of cake so far.  hm, hm, hm … At this stage the goal is to reach 0%.  Once reached, they plan to keep me on the med for 6+ months then decide the next steps. 🙂

Thank you for faithful prayers and support.

In His Grip

Sami

I was told by MDA that I had two options.  The first one, which I refer to it as the Nuclear option, meaning that they will put me in isolation again, give me the harshest Chemo again, have my blood counts back to zero again and start giving me blood products again … and again and again …  As the physician was drawing that nuclear option on a piece of paper with its associated details …. I have to be honest with you …  I really blinked … and paused … but made sure to hide my true feelings from Jacqueline … and I told the Lord … I can’t Lord … this is way more than I can handle.  I am still full of unhealed wounds from these past battles … this is too much and you have promised that you would not allow us to be tested more than we can endure  (1 Cor 10:13) … and I am certain that at this stage, I am unable to endure this all over again.  Then the Leukemia physician said, the second option is a simpler one.  You join a special study at MDA that is targeting your specific Leukemia and you take one tiny dose of a liquid chemo by mouth daily at home. However, we are not sure if you qualify for that study.  Your Leukemia should not be mutated, additionally we will need a chest x-ray, EKG, BMA and blood tests and they should all look acceptable … and by the way, your insurance should approve you joining this study.

Friday morning (today) we came to MDA … the Leukemia physician met with us, and to make a long story short, my Leukemia was not mutated, I had passed all the tests and my insurance provided the green light to proceed, so I was able to start on this tiny chemo dose today. PTL!  I had to spend the whole day at MDA (came home @10:30pm).  Per the study protocol, they had to monitor me after I took the first dose, which included 6 EKGs and 4 blood tests (I tell you, I have never been so happy to give blood as much as I did today ).  I still have to show up tomorrow for more tests (but not as much) then on day 8, 15 and 18.  Then do it again for the second month … and from there on, just take the meds (that tiny dose) at home until the physician determines a complete remission has been reached.

Thank you for your support and prayers. Your blog entries and emails have been a great blessing.

In His Grip,

Sami – Gnight !

I was informed on Monday that my Leukemia has returned and that my case was transferred back, from the Transplant, to the Leukemia department.  As I was searching my soul today trying to make sense of it all, I found myself asking the question ” I don’t know what to do at this stage” … then an inner voice answered me “what do you mean by you don’t know what to do? you have always done it before.  This is no different. Nothing has changed !” Then Psalm 11 verses 3&4 came to mind.  “When the foundations are being destroyed, what can the righteous do? <remember> The Lord is still in His Holy temple; The Lord is still on His heavenly throne.

It is interesting that Ephesians 6:13 says that “after you have done everything … i.e, every single thing and almost ran out of breath … to stand and stand firm in the full armor of God.

So as long as I still have breath, I will stand … and stand firm … keeping my eyes and mind focused on the fact that my Lord is still in His Holy Temple, I will keep doing what I have always done, Praising His Holy name, until He calls me home.

Still in His Grip,

Sami

Today is day 100 and my bone marrow is still 100% clean. PTL !!!
It is only appropriate to rejoice and praise through Psalm 100 on this blessed 100 day!!!

Psalm 100 – Giving Grateful Praise to our Lord.
¹ Shout for joy to the Lord, all the earth.
² Worship the Lord with gladness; come before Him with joyful songs.
³ Know that the Lord is God.  It is He who made us, and we are His; we are His people, the sheep of His pasture.
⁴ Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name.
⁵ For the Lord is good and His love endures forever; His faithfulness continues through all generations.   Amen

Little angel Bronwyn Fogerty launched a star of thanksgiving for that day 🙂
http://constellation.standup2cancer.org/41072 – thank you Bronwyn!

It was cool that some started celebrating yesterday since it was already 100 days in their time zone.  That was too sweet !!!

I want to thank you all for your faithful prayers and support.  You have no idea what a blessing this journey has been (yes a true blessing).  It was all worth it.  I got to reunite with my beloved cousins (which was priceless), find old friends, meet new ones, discover the deep deep deep love of our Lord and understand what it really means to go through a furnace that was made 7 times hotter and come out not even smelling like fire.

You gotta love Him !!! PTL

In His Mighty Grip

Sami

According to the MDA BM department, I am 90 days old today! and … I feel greeeeat (as Tony the kellogg’s frosted flakes tiger says) . I had my Bone Marrow Aspiration and Biopsy on Friday the 24th and it was uneventful to the point that I told my nurse to give me another round 😉 On Monday the results were out and I was told that my bone marrow was squeaky clean, as if Jacqueline cleaned it herself (although we know He did it)  I had 0% blast!!! (the normal range is from 0-5%) PTL!!! Next week, my transplant doctor is planning to add a low dose of Chemo pills to my maintenance plan and If all goes well, then he will approve removing my tri lumen catheter which will allow me to be fully free !!!! … Samir is anxiously awaiting this day to start wrestling again with yours truly … 🙂

As a blessed side note, I overheard the other day my Mom and Jacqueline saying that, usually, after walking through the valley of shadow of death, people look back and then realize that the Lord was with them all the time … however, in our case, we felt Him on a daily basis, while still in the valley, with every single step.  PTL!!!

I thank you for faithful prayers and support! Day 100 is around the corner (ya yes!) 🙂

In His Grip,

Sami

Today is day 70 since my BMT and according to MDA, I am 70 days old.  It sure feels good to be 70 (again) !  Last week they started my maintenance Chemo.  It was … interesting to say the least 🙂 I was given 10 injections in my tummy honey – 2 a day for 5 days.  At the moment they are monitoring my blood levels to determine the impact of the Chemo and plan to adjust it accordingly. They are also planning to “add” Chemo pills to this regiment so I end up with 5 days of injections and +14 days of pills, for a whole year – (fyi; believe it or not, my case is fairly new to MDA – they have not had anyone go for back to back BMTs as quickly as I did or put on such a double maintenance Chemo – I guess I am, after all, one of a kind!! lol ) Well, so far so good. I am still alive and kicking !!!  Sometimes I do lack energy, other times have minor side effects, however, all in all, I feel very blessed.  I am blessed to be home, surrounded by loved ones and able to hit my own sack at the end of the day, free from IV lines. hm, hm, hm … PTL! As a side note, I had a few friends and relatives visit me at home and once they tasted Jacqueline’s tabouleh immediately commented that it was delicious and indeed full of healing powers – I guess when you’re blessed, you’re blessed all the way – -PTL !

I thank you for your faithful prayers and support for the past … hm … past … wow … it has been a year! hm, hm, hm … it is amazing how time flies when you’re having fun with the Lord, even if it was in the valley or a hot furnace …  He gives you a peace that surpasses all understanding. Before leaving Dubai, I found myself meditating on two verses from Jeremiah 17, verses 7 & 8

“Blessed is the man who trusts in the Lord, whose confidence is in him.
He will be like a tree planted by the water that sends out its roots by the stream.
It does not fear when heat comes; its leaves are always green.
It has no worries in a year of drought and never fails to bear fruit.”

When I read “has no worries in a year (not days, weeks or months – but year) … I paused and wondered how I would react if it ends up being a year … it never left my mind and here I am today, having passed through a year of drought with no worries !   What can I say but PTL !!!

In His Grip,

Sami

First, things first. Ramadan Kareem to all of my dear Muslim friends around the world, especially in Iraq.

With that said, where am I in this Journey? I guess I would categorize it as another opportunity to dive deeper … what I have learned is that you have to be all in, fully trusting the Lord, and once in, you have to be “ready” to experience it all (its ups and downs), otherwise, you will miss on a great opportunity to grow spiritually, personally and physically.   If life was so easy, i.e – easy in/easy out – it could become a meaningless routine, it wouldn’t be worth living without challenges that would shape you, as long as you do not allow them to break you.

1 Peter 1:7 – These have come so that your faith–of greater worth than gold, which perishes even though refined by fire–may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.  A priceless opportunity to experience pain and joy … while strengthening your faith and experiencing reality.

Well, to date (day 50), my BMT#2 has been very successful. Not much side effects, my blood counts are back and I am gaining strength on a daily basis, however, I was reminded that all this does not mean much since it’s a Déjà vu. Same story last time post my BMT#1 – feeling great until my replaps on day 89.  Accordingly, the Leukemia and Transplant heads met and decided that this time around they are not going to take “any” chances.  They shared with me and Jacqueline a plan for the next “year” (wow – no mercy – لا رحمة) – I greatly appreciated the fact that they took this firm stance and came up with a “custom” plan just for me, which includes two (not one!, but two) Chemo medications (mamma mia!).  The plan is to have me on these meds for a whole year.  Justification is that I relapsed fairly quickly last time, so even though they cannot see any Leukemia cells at this stage, they still “assume” that some might still be there and thus plan to treat me accordingly.

The first lesson learned from this Journey is to remember that God is still in full control (so why should I worry?) and secondly, not to lose focus of the many blessings that surround you, and in my case, I am saturated with blessings. (PTL!) To list just a few, I met too many patients that had to travel to Houston for MDA, leaving loved ones, friends, homes, etc … yet in my case, MDA is almost around the corner.  At the end of the day I get to enjoy my kids, spend time with my Jacqueline and give mom a hard time, while being surrounded by my sisters, their families and my friends in Houston and via the web, which includes you !  – – – I am very blessed and could not ask for more – PTL all the time!

Thank you for your faithful prayers and support !

In His Grip,

Sami

I had my Bone Marrow Aspiration (BMA) on Monday the 25th. It was uneventful, even though Victoria was unavailable to do it. I had Kenya instead, and I made sure she knew that I had asked for Victoria and how “smooth” Victoria was  – – extra shots of Lidocaine (local anesthetic) and very slowly handled the aspiration pulls. Well, Kenya assured me that she will do the same … and she did ! and the outcome was no pain and a lot of gain (for yours truly). PTL !

The final BMA results were in today and there was no sign of Leukemia !  PTL !!!!  Additionally, my blood counts were almost perfect !  The doctor examined me today and said “you are a perfect picture of health !”  – – – Jacqueline was sitting on the other side of the room and turned sour. She did not say a word until the doctor left the room.  Once gone, Jacqueline asked “what did she mean by – you are a perfect picture of hell? – I did not think that was funny!”.  While lol I said, ” well habibo, she said a perfect picture of heal-th, not hell”, she then smiled and her beautiful face came back to life! (shou hal amoura !)

I am hanging in there.  Some days I feel like a hero while others I feel like a zero, meaning, sometimes I feel full of energy while others, like a couple of days ago, I feel all depleted and unable to move much.  The doctor assured me that was very typical until day 100, when the effects of the Chemo are gone and I am no longer taking GvH medication.  Will see.  Until then, I am taking it one day at a time.  🙂

I greatly appreciate your prayers and support.  They keep me going!

In His Grip,

Sami