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Monday, May 28, 2012

Day +12: Update...

Sorry for not posting for quite sometime.  To be quite honest, I haven't had the energy nor the desire to post, rather opting to just be.  Trying to not think to much other than to figure out how I can best help Andrew and serve my family.
Andrew's growing tree of medications and supplements.  

Andrew has had his ups and downs the past 12 days.  The title refers to how many days since transplant.  Day zero being his new birthday.  Since his transplant, many drugs have been administered and with it, the side effects.  An anti rejection drug called ATG, which is a derived from rabbits, caused major chills, fever and low blood pressure the first day.  Andrew got this treatment for four rounds every 48hours.  After the first round the Doctors adjusted the length to lessen the side effects and his side effects were less severe.  He is also getting a drug called GCFS which helps in stimulating white bloods cell growth and as a precaution, they medicated Andrew with several drugs to keep him symptom free.  Also, along with the ATG he has gotten low dosages of chemotherapy drug called methrotrexate.  He is on a around the clock anti rejection drug called cyclosporin, which he will continue to take in oral form after he is released from the hospital.

Andrew also has had fevers and is on two antibiotics.  The blood cultures drawn were negative, so the two broad spectrum antibiotics should and are doing the job.  The fevers are a normal considering his white blood cell count is zero and he is neutropenic from the pre transplant chemotherapy and radiation.  Andrew developed mouth sores as expected, from the high intensity chemo and radiation, and a sore throat, but they seem to be getting better and we are thinking the experimental drug, Palifermin,  I had mentioned has been helping.   He also has been getting  around the clock pain meds for his sore throat, mouth sores and pain from the chemo, which has made him sleepy.  The medication also makes him itch, so Andrew gets Benedryl as well.  So you can see why he may be tired.  Andrew was eating nibbles of pretzels and other snacks initially before his mouth sores and sore throat impeded that.  Andrew is on a nutritional supplement called TPN which he gates through his i.v., which gives him about 1000 calories a day. In the midst of a sore throat and mouth sores, Andrew continues to drink as much as he can.   It's suffice to say Andrew has dropped a substantial amount of weight.


Some days are good, but most of the days have been filled with pain and weariness.  Most kids Andrew's age want to sleep the whole transplant process away.  The issue with that is it is really difficult to get out of the hospital sooner than later because of the muscles atrophied and not being ambulatory.  To Andrew's credit he has gotten up, with the "encouragement" of nurses and doctors, for example to play games, learn how to play guitar with the help from music therapy and other interesting ways to get Andrew upright.  He can't do much of walking in his tiny isolation room, but he is trying to sit up for stretches to get his blood going.  The doctors have stressed to him to keep stimulated mentally and physically so it will help him to get out of the hospital when the transplant aspect allows him to.  There has been many times where Andrew is awake and he does nothing but stare and we have asked him if he wanted to look at his iPad or watch tv, but he usually refuses.  Like I said, there are good days and bad, but we know the effort he is putting in to be active, whether begrudgingly or willingly, will pay off when he is ready to be released.

Daily activities marked off with, of course, Sox buttons!  By the way
Cub fans, have you seen the records of the two Chicago teams these days? ;-)

Andrew's days are filled with certain regimens as you can see on the picture above.  Andrew gets preventive mouthwashes and an antibiotic oral paste to help keep the severity and duration of the mouth sores less, four times a day.  He also blows into a contraption called a spirometer to keep his lungs strong.  An important part of his routine is his skin care, which consists of several types of lotions, to help prevent rashes and to keep his skin moist, which gets so dry from the room and the chemo.  He also has to get up to take a bath or on bad days, get wiped down with bath wipes.  

Andrew mentally has been alright.  He can be grumpy and moody at times, but that is quite understandable considering his situation.  Jennifer and I take turns staying with Andrew and we both know are limits and understand when we need to walk out of the room when need be.  It is not easy taking care of a your child who is critically sick and Jennifer and I know if we are not doing well mentally and physically, we can't give our best to our son or to Emily and Bryanna.  

GOOD NEWS AND SOME ANXIETY!

A daily chart for us to see where Andrew's blood counts are, so we can gauge
whether Andrew's counts are getting better to see whether his donor cells are grafting.
The picture above is of a white board in Andrew's room showing Andrew's blood counts.  As you can see on day zero, 5/16,  Andrew's ANC and white blood cell counts were basically zero, due to the chemo and radiation that wiped out his system to prepare his body for the donor cells.  Today, an encouraging bit of news:  Andrew's ANC and white blood cell counts are rising.  Meaning, grafting of the donor cells are taking place.  Other signs showing possible grafting other than counts are other symptoms like nausea and  vomiting.  The doctors told us to expect grafting somewhere around the 14 to 21 day mark.  Now with grafting means the potential and the likelihood of GVHD which I had mentioned before.  If you recall, GVHD (graft versus host disease) is a complication in which the donor cells attack the host cells, as a result, side effects can occur which range from severe to mild gut issues: i.e. from the mouth to the stomach and all the way to the anus which can cause severe diarrhea, blockage of the gut, vomiting and nausea.  Other complications can effect the liver and more commonly skin rashes.  Like I said, this is an exciting yet anxious time.

I ask you all to continue to lift up Andrew in prayer and specifically to pray for these things:

-Pray for the donor cells to come in sooner than later.
-Pray for the GVHD to be kept at a minimum.  Ok, I will ask for a miracle.  I ask that you pray for no GVHD!  I know you most of you are aware of his chromosome abnormality clearing up miraculously and Andrew getting into remission, so I will pray for a miracle;-)
-Pray for Andrew will be in some sort of comfort in the midst of all the side effects from the various treatments. 
-Please continue to pray for our friends Kim Cho and Connor Lim.  As most of you know, Kim has recently finished her chemo regimen and is in complete remission!  Pray the cancer would stay away for good!  Also, pray for seven year old Connor who got his bone marrow transplant a day after Andrew's and is recovering and waiting for cells to come in.  Pray too that Connor would have little or no GVHD.
-Feel free to pray for other things as well.

UPDATE!!!!
Another blood culture was drawn, an hour ago,  since Andrew got a bloody nose after three units of platelets, which helps clotting , and the his ANC has shot up from 163 to 463 in less than 14 hours!  His counts are definitely shooting up!


UPDATE TO THE UPDATE (5/29)
Andrew is officially not neutropenic!  That means he technically has some infection fighting capability.  His whittle blood cell counts are coming, all indicative of Andrew possibly grafting.  


ANDREW WILL STEP OUT OF HIS ROOM WITH A MASK TONIGHT AND WALK AROUND THE FLOOR!  


Dr. Chaudhry mentioned Andrew may be able to leave the hospital before the move to the new hospital on June 9th, but I quickly put a kibosh on that by saying let's take it one day at a time.  Keep praying you all.

Again, I apologize for not blogging sooner.  I know many of you were worried that something may have happened.  No, I just was so wiped out from taking care of Andrew and the stress of transplant.  
Thanks again and Praise God from whom all blessings flow!  

Love,
Joe






3 comments:

  1. My prayers are with you!! I can only imagine all of the mixed emotions!! I am comforted, knowing that you are not alone!

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  2. Thank you for keeping us updated in this journey. You are on my mind every day...I look forward to all your posts going forward and maybe a sandwich with you and Andrew some day at Tony's.

    Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

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  3. Hi Joe. I know that feeling...you just wish they could sleep through this part and wake up at Day 100! The more he can do now the less chance he'll need rehab later. It's amazing what the human body can endure...
    I wonder where patients "go" when they are quiet and seem lost in thought. I saw that a lot with my sister...I think she went to a mindful place that helped her transcend what was going on in her physical body. What a gift to be able to do that!
    Praying for you all. Praying for a steady rise in blood counts and mild GvHD!

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