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Wednesday, April 25, 2012

A Few Days of Freedom....

     Sorry for not updating Andrew's condition for quite sometime.  Since the last update, Andrew was released on the April 10th for a bacterial infection and on the 15th for another admission.  Since, Andrew has had several blood and platelet transfusions and appointments back at Children's.  Andrew's spirits are a mixed bag of emotions, glad he is out of the hospital, but pensive and fearful with the transplant looming.  I will elaborate on Andrew's state of mind throughout this post.

Andrew finally getting to go to a Sox game after getting out of the hospital the day before, after many disappointments of not being able to capitalize on free tickets (which have ranged from the Bulls and the BlackHawks) offered to him many times!  Thank you Make a Wish for providing such awesome seats!  
We are counting down the days to the transplant process and a process that will consume our lives for the next year.  This past Monday Andrew and I went to Children's for a day full of pre transplant baseline testing which included radiology, ekg, echocardiogram, audiology, pulmonary function and a meeting again with the stem cell group.  The day was quite overwhelming with all the testing, but the meeting with stem cell transplant may have sent me over the edge mentally.  Besides the cursory forms and consents to sign, which made the reality of what is about to happen more real, we discussed again the side effects of transplant, radiation and chemo.  Andrew has not been really keen in knowing the side effects of pre transplant and transplant.  When we have asked if he would like to hear about the process, he usually shakes his head.  We have asked if he is scared and he pretty much has nodded his head every time.  But at Monday's meeting, I felt as if he needed to hear more about the process.  When we were in the meeting with Dr. Sonali, I suggested to Andrew to talk to Dr. Sonali.  Dr. Sonali is known for her utmost candor in explaining the worse of transplant.  I appreciate the fact she has told it like it is to Jennifer, Yun and myself and not sugar coat what may happen.  Dr. Sonali told Andrew she would go over the basics and somethings he would encounter, trying not to overwhelm him in the process.  After he agreed, I decided to give him and Dr. Sonali privacy.  
Afterwords, Andrew thought it was beneficial not only for the information on transplant but in getting to know Dr. Sonali.  This was only Andrew's second time meeting her.  She said her method of relaying things were more gloom, but he liked that instead of the sugar coat.  

Moreover, the news of Andrew possibly being sterile due to the past and present chemo treatments, and the radiation provoked many emotions.  I know the news of this may be lower on the list of things to be stressed about, but it was overwhelming nonetheless.  The fact Andrew may not be able to rear a biological child was sad.  On the other hand, not only was I sad, but also angry with not knowing about possibility of sterility.  Jennifer and I had a  discussion with Andrew's oncologist, Dr. Morgan, and there seemed to be some resolution on why this was not discussed.  I won't bother you with the details.   

At this moment, I am waiting in the wait room of the radiation oncology department at 
Northwestern Memorial Hospital for a pre screen for Andrew's pre transplant twice a day total body irradiation which will last four days.  Before I forget, I will try to give you an idea on what the next several months will be like.  Andrew will begin pre transplant radiation for four days, starting on May 8th to the 11th and that night he will be admitted to Children's for three more days of intense chemo (the most intense he has ever experienced) to totally clean his system to ready for the new bone marrow, which will end on Monday the 14th.  He will then have a day of rest being moved into isolation and then the "BIG DAY":  TRANSPLANT DAY OR WHAT THE STEM CELL UNIT CALLS "DAY 0" will be upon Andrew.  A NEW BEGINNING OR ANOTHER BIRTHDAY...MAY 16TH!  Another tidbit we learned, Andrew's donor is a 41 year female from none other than the United Kingdom.  Who knows, Andrew may come out of transplant wanting fish and chips, driving on the left side of the street, having high tea every afternoon and wanting to bow to any royalty;-)  We are so thankful we have donors like her all over the world.  Her bone marrow will be harvested on the 15th and flown via courier over to the United States.
The transplant, which is rather anticlimactic, will have the bone marrow being administered via i.v. over several hours.  That's it!  The chemo and radiation will most likely cause severe mouth sores and problems swallowing.  He will be given a suction device to take any saliva out and will result in him trying to learn how to swallow.  Thank God Andrew was approved to take an experimental drug called palifermin, which has been shown in adult cases to reduce the time of the aforementioned symptoms.  
The main issue for Andrew will probably be GVHD, graph versus host disease, which may be mild to severe and anywhere in between, where the body will try to reject the new bone marrow.  GVHD is a high probability with Andrew's match not being a sibling donor and not a perfect match. The GVHD will manifest itself in many painful symptoms.  The symptoms will be mouth sores, issues with the gut, liver, skin rashes, among the major symptoms.  Realistically, Andrew will be in the hospital for at least a month, isolated, depending on the severity of the GVHD.  When Andrew gets out, he will need to be close to the hospital for at least a month, initially having several appointments a week and more than likely e.r. visits for fever and other complications from the transplant.  Andrew and a parent will be more than likely staying at the brand new Ronald Mcdonald house, which reminds me Andrew will be part of the big hospital move to the new Children's Memorial called the Ann and Robert Lurie Children's Hospital on the campus of Northwestern Memorial Hospital, being one of the first being transported in the wee hours of the morning on June 9th.  

We learned Andrew will not be able to go to school until at the very earliest January of 2013;-(  That is second semester of his senior year.  Andrew will not be able to go to crowded public places because of his immune system recovering and not being able to fight infection properly until January or so, if all goes well.  Andrew will not be able to eat certain foods and most definitely not be able to go out to eat or have anything carried out.  Sucks doesn't it!   

With that being said, Andrew's counts are back to healthy levels post chemo and he will be able to "live it up" for a couple of weeks before he goes through an excruciating pre transplant regimen and pretty much the rest of the year, getting healthy in the confines of the hospital and home.  We will try to make the next two weeks "fun" for him, whatever way we can.  I know he wants big steak dinner, sushi, hang out with friends among other things.  I know many of you have been so generous in giving Andrew gifts and the like while he has been going through chemo the past three months.  If you would like to help Andrew out in "living it up", let me know.  

Well, I am going to end here with some prayer requests:

***I forgot to mention, but Andrew will need to have a bone marrow biopsy to see if his cancer is still in remission.  I don't want to take anything for granted, but please pray the cancer is still in remission and he will be able to go to transplant.  The biopsy should be this upcoming Monday.

-Please pray for Andrew's mental state.  Pray Andrew can recognize a modicum of God's love and sovereign plan for him through this tough time.

-Pray for minimal side effects from the radiation and pre transplant chemo

-Pray as God has miraculously gotten Andrew into remission and had cleared up his chromosomal abnormality, pray for a miracle of not having GVHD or the side effects being minimal at best.
-Pray for Jennifer, Yun and myself as we take care of our son 24-7. 

Other Prayer Requests:
-Please pray for a 17 year old girl named Ana who received a bone marrow transplant in early January and has been in hospital for over 120 days with complications due to gvhd.  She was recently released, but was hospitalized again with a severe staph infection.  Ana's parent, who are Christians, Sean and Lisa are great people, but are weary and spent!  Imagine your child being in the hospital over 120 days straight without eating 115 of those days, with severe skin rash, complete shut down of her gut and now staph and  liver issues!  You can't, but you can pray for a modicum of peace and comfort in their lives.

-Pray for our friend Kim, whom you have heard about in my blogs and is complete remission.  She has her last round of chemo this week.  Pray for side effects to be minimum and she would remain cancer free.

Thanks again!  If you would like to reach me at my personal email, please contact me at: 
josephp101@yahoo.com

xoxoxo,
Joe 

3 comments:

  1. I'll include Andrew in my prayer.Karla from the Philippines

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  2. Joe and Andrew -- No two journeys are the same when it comes to dealing with leukemia! Take it one day at a time. The doctors have to disclose everything that could happen, but who knows what Andrew's experience will be?
    And just to share a positive story...the current President of our Board battled leukemia 18 years ago. Since that time he has gotten married, and fathered 3 children. Another member of our Board beat leukemia TWICE!
    Try not to let all the information frighten you. Truth is you want to have a little GvHD after transplant...it's one of the signs that the bone marrow is grafting! Grafting = success!
    I'm glad that Andrew has a little time to enjoy himself over the next two weeks. I could offer Cubs tickets, but unfortunately the tickets are for May 16. I know you will be focused on very important things that day.
    My prayers are always with you, Andrew, and your family.

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  3. You probably don't know our family because we started going to Calvary not too long ago, but I wanted to let you know that our small group has been praying for Andrew every time we get together for Bible study. Also, I just subscribed to your blog in hopes to be more informed about Andrew's condition.
    We will continue to pray for Andrew and your family as he prepares for his bone marrow transplant and any symptoms that may follow.

    May the Lord watch over you, protect you, and give your strength.

    Gina

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