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Thursday, May 31, 2012

DAY +15...COMPLICATIONS...

Andrew's first venture outside.  He was able to walk to the outside
door to get on the stretcher to go to  a c.t. scan to see what is going on with his lungs.  

Day +15 (5/31,  6:43pm)

Andrew had a rough night last night.  The scheduled c.t. scan this noon required Andrew to be pre medicated starting last night at 11pm with steroids because Andrew is allergic to the iv contrast used in the scan.  Since taking the steroid and ativan for nausea, the doctors are deducting these drugs are the reason why he seemed to be in a delirious type of state last night.  He would constantly talk in his sleep (more so than usual), motion with his hands like he was grabbing at things and sit up.  He would try to pick at lines and constantly took his oxygen tube out of his nose.  It was a long night for our nurse Bridget. The psych team came in to do some neurological tests and they seem to think it was the confluence of drugs last night.   Some good news, Andrew's fever finally broke and has not been back since early this morning.  Also, Andrew's mouth sores and sore throat are getting better.  Andrew has not gotten pain meds for over 16 hours.

Andrew never made it out for a walk, but this morning he walked outside, albeit in a dazed state, to get on the above stretcher to get a ct. scan done to figure out what was going on with his lungs.  I asked you all to pray for his ct scan, but God chose not to answer in the way we saw best.  Andrew has an advanced case of pneumonia which required the doctors to change up the antibiotics and fungal medications Andrew is on already.  The draw back to all these drugs is that it could effect the kidneys.  
So I ask you all to pray for the pneumonia will clear up quickly and the drugs used would not effect the kidneys.  Also, please pray Andrew would come out of this semi delirious state.

I will keep you updated....

Philippians 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Wednesday, May 30, 2012

Day +14...

DAY +14 (May 30: 11:07am)


Andrew's ANC and white blood cell counts shot up over three fold overnight   Along with common side effects,  the anc and wbc shows Andrew's donor cells are grafting.

The past 24 hours have been a struggle for Andrew to stay comfortable with non-stop fevers and chills that come with it.  Andrew has had retained a lot of water which may explain the fluid in the lungs, which may explain his issues with breathing.  Andrew will have a c.t. scan later today to see if there are any issues.  Blood cultures drawn the other day identified a bacteria which is being treated with three antibiotics.  Andrew also in on around the clock oxygen because of the lung issues which has cause his oxygen saturation to dip into disconcerting  numbers.

So it's suffice to say Andrew is not comfortable.  I don't know how this kid does this day in and day out!  What a courageous fighter.  I had mentioned on Facebook Andrew would try to venture out of his room to take a walk since his counts have risen to the point of being able to fight infection,  but since his fevers, the foray into the halls of four west did not materialize.  We will try again later this afternoon.

Please pray for the requests I wrote down last post and pray the c.t. scan would not show anything wrong with Andrew's lungs.

Thanks Everyone.

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






Wednesday, May 16, 2012

Happy New Birthday Andrew!


Happy Birthday to Our Boy! Reborn 
May 16th at 1:35pm at
Children's Memorial Hospital!
Andrew's Room for at least a month.
Isolation.
Childlife Services decorated the room in Whitesox and other favorite teams of Andrew.
The "tree" that is keeping Andrew going!

Quirky Nurse Margaret who brought the bag of
stem cells in and administered them!
Stem cell (Bone Marrow)!

Andrew with his marrow, giving him a chance to live.
Getting ready for the infusion.  Notice
Andrew playing his DS, what a cool customer;-)

Drip, drip, drip!  The infusion starts!

We are so looking forward to seeing NMDP donor id:
0336-6409-2 in a year to thank her for saving Andrew's life!

Thank you for all your prayers and thoughts!  The stem cells arrived this morning at 5am via courier and was sent directly to Northwestern Hospital for processing and sent back late morning to Children's for the transplant that took place at 1:35PM.  There was a whole list of things to do before he actually got his new bone marrow.  Pre medication was the main thing.   As you can see in the picture, the bone marrow looks like a bag of blood or tomato puree.  We were fortunate enough the donor was able to give the amount she did, considering she is a woman.  This was advantageous for Andrew, considering he is bigger than an average adult.   Also, Andrew's donor's blood type is A+, same as Andrew's, so he won't be changing his blood type.  The actual infusion was only 30 minutes or so.  That's it and voila, Andrew has new marrow.  

It will take at least a few weeks for the marrow to graph and then we will see how severe or to what extent he will get GVHD (graft versus host disease).  GVHD is basically Andrew's body trying to reject the bone marrow.  It is good to get some gvhd, considering it is indicative of the bone marrow trying to graph.   Again, Andrew will be at Children's for atleast a month in isolation, longer depending on the Gvhd.   I ask you all pray for the GVHD would be minimum!  Andrew continues to do relatively well considering he had 7 days of high intensity radiation and chemo.  He sleeps a great deal, but that is due to the body being beaten up by the chemo/radiation and the pain meds he is getting for all the body aches and pain.  The doctors are surprised he is doing as well as he is now.  He has not gotten the dreaded mouth sores we were told of that could manifest because of the radiation.  I am praying the experimental drug called Palifermin, which is $7000 dollars a vial, is doing it's job of keep the mouth sores at bay and if they occur, shortening the length and severity of the sores.

Yesterday, Tuesday the 15th was very emotional for me as we moved into isolation. The very act of going down two doors to our new room triggered many emotions.  On one hand I was hopeful and excited and on the other, I was pensive and scared to the point of tears.  I shared this with some of the nurses and they were so supportive.  Courtney, one of the nurses, even asked if I needed and a hug and humbly nodded.  The care givers on the fourth floor at Children's, the hem oncology ward, affectionately called 4 west are amazing and we could not go through this journey without, not only their professional skills, but their care emotionally!  The floor becomes family, especially meeting the parents of the sick children.  

With that being said, I have grown rather close with two families the past 5 months.  One being Anna's parents, Sean and Lisa Daley and most of you know Anna went home to be with the Lord last Tuesday, after a long battle post transplant with severe GVHd.  I just  found out yesterday Deona William's son Ernest, whom we roomed with many times, past away suddenly Monday.  I had just seen Ernest and Deona last Friday when they were here for out patient chemo!  The two families I got to know, lost their children!  Both only children.
God gave me both families to help me get through the tough times and for them to lean on me as well.  I know Anna and Ernest are in perfect joy in the audience of Jesus.  They will be missed and their legacy of courage and love will carry on forever.  Rest In Peace.

Thank you all for the prayers and love!!!  We are "hunkering down" for the long haul and praying for engraphment soon!  Keep on praying for Andrew and our family.  Bless you!

Love,
Joe

Tuesday, May 15, 2012

So Close!

HERE WE GO!
I usually write a post,  but with this day being rather hectic with the move to isolation, I instead will give you a video update.


video


Keep on praying and blanket our Andrew with prayer!  Thanks guys!

I can do all things through Christ[a] who strengthens me.
Philippians 4:13

Thursday, May 10, 2012

Day Minus 5....

Transplant day in the profession is called "day zero" or a new birthday.  Andrew finished day -5 by completing his 6th round of radiation and is that much closer to his new birthday.  The nausea and overall pain in his body is being adequately being managed by various pain and nausea meds.  Andrew is still achy.  A developing side effect is his loss of taste and smell.  Food is bland to him and everything taste the same.  Radiation does cause dry mouth and a testament to this is at the front desk of the radiation oncology department, where there are boxes of Lemonheads to take for patients.  Andrew prefers Sour Warheads;-)  Another side effect to the radiation is he is getting "sun burned".  Eat your hearts out Jersey Shore fans;-)

We were scheduled to be admitted Friday, but with last night's admission, we are here for the long haul and at least one month in isolation post transplant.  I can't believe how quick the transplant has come up.  Radiation is almost over and Andrew will get three days of highly toxic chemo drugs over the weekend, a day of rest Tuesday and voila:  TRANSLANT/Andrew's new birthday!


We have started this race and journey and as this picture shows, we are not quite sure where this journey will take us, but we know there is a finish line. That is where our faith as a family will need to be exercised and stretched as it has already been the past several months.  I know the worse case scenario side effects Andrew may develop and I have witnessed death several times over in the oncology ward, but I stand with a pea sized faith, trusting God's good and sovereign plan will be fulfilled, in the midst of my fears and doubts.  It will take a community to heal Andrew and get him well.  It's not only health care professionals and immediate family, but all of you my friends and loved ones who will get us to the finish line..  I humbly ask you all for your help in whatever way you can extend.  Many of you have committed to praying for Andrew and our family, others have written wonderful bits of encouragement and others have hugged magnanimously or given a shoulder to lean on.  Whatever way you decide to help us run this race, I thank you ahead of time as you surround Andrew and our family until we cross the finish line.  
TEAM ANDREW!
"I thank my God every time I remember you"Philippians 1:3 

              So with the transplant right around the corner, I indeed lift our plans to the Lord:
Commit to the LORD whatever you do, and your plans will succeed. Proverbs 16:3

As always,  I will keep you updated on Andrew's well being as soon as I can.  Can I ask a favor, can you comment on when you got the email notifying this new post?  I am having issues with the delay of notifying you all there is a new post.   And while your at it, comment and just say hi or whatever.  It would sure be nice to hear from you all.  Thanks!

Almost Forgot, check out this inspiring video of oncology patients at Seattle Children's Hospital:



Love,
Joe 

Wednesday, May 9, 2012

Update and Sad News....


UPDATE;
Sorry, but it seems there is a major delay from when I post blogs to when you all receive the notification there is one.  
This morning 5/9 Andrew had his third round of radiation and came back to Kohl's House, an apartment for transplant patients and families, to rest.  After sleeping for sometime, we got up to get ready for the afternoon radiation treatment and Andrew developed severe body aches and severe nausea.  The stem cell team decided to bring Andrew in and give fluids because he had not really drank or eaten anything for over 36 hours.  Also, Andrew got pain meds and anti-nausea meds.  He felt bit better and we went to Northwestern to get his second radiation treatment of the day.  Andrew felt a bit better, but around 9pm, he started to shake and cry, complaining about the same symptoms earlier.  We are in the e.r. and will be admitted to for pain management.  With Andrew already being scheduled for admission after his last radiation treatment on Friday,  Andrew probably has seen his last day of home for at least a month:-(





Many of you know of the situation with a young gal named Anna (17), who we met at Children's and has struggled tremendously post transplant.  Well, Anna went home to be with the Lord yesterday afternoon in the loving arms of her parents.  Jennifer and I were deeply saddened on her passing. I have known people we have met a Children's that have passed away, but this passing hit me like a ton of bricks! But our grief is buffered by the fact Anna is home with God in heaven. We uttered a prayer for her family and reminded each other Andrew will be okay and God has his best interest at hand.   Here is the most recent blog Anna's parents, Sean and Lisa sent out.:



No More Pink Buckets
Written 2 hours ago by Lisa Daley
Dear Friends and Family,

This is the last photo we took as a family Sunday afternoon holding the wooden cross Mary Bunch had given us that had been displayed on Anna's Iv pole for months. Anna loved this photo and even told the nurses of how much it meant to her while they cared for her. This cross was held close to Anna's heart today as she laid dying in our arms. Sean has this cross around his neck since her death.

Many events have happened since our last posting. We will share all of them with you at a later date because God's presence was so manifested in Anna's life in the end. This afternoon at 4:20pm Anna went to be with the Lord with grace, dignity and courage well beyond her maturity and years! While hearts are sad we are at perfect peace that our Anna was a gift from God and glorified Him to the very end teaching all about God's grace that is sufficient. While in pain and suffering in death, she never cried nor complained letting everyone know her trust in God and being brave for not only us as her parents but the many stem cell, physicians and nurses that wept tears today on behalf of Anna. 

Anna was at complete peace and died in our arms smiling back at us as we proclaimed what a brave and faithful servant she had been. We are returning home tomorrow without our Anna. Our hearts will be heavy to return to the house that was so filled with Anna. She even today ask if it was possible to return home one final time. We told her she was going to her eternal home with the Lord. 

Arrangements are in process of being made with Anna's youth pastor, Sterling. Anna before dying expressed her love for the church and ask that in lieu of flowers that memorials be made to First Baptist Church of Geneva. More details will follow at a later date and we will share more of her final hours special moments with you because in death she was such an example of Christ!

Thanks be to God for our special gift of Anna! As Anna said many times in her post, "God is Good!". ...... Even in death we have peace that truly passeth all understanding. 

"Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.". Phillipians 4:7

"I can do all things through Christ that strengthens me.". Phillipians 4:13

We hold those verses in our hearts and after nine months to the date hold these covenants of God to be true to our hearts and to Anna's example of living.

Praise be to God and thankfulness for each of you in our journey loving and supporting our beautiful Anna Michele!

God's blessings that Sue was with us till the end. She prepared Anna's body for us as her final gift of love and served Anna communion this morning with us in preparation for Anna's death.

Sean and Lisa 
_____________________________________________________________

It was no coincidence I met Lisa and Sean.  They have been great examples of what a Christian should be.  They showed a peace in the midst of extreme trials that passes all human understanding.  Their faith, hope and the trust they had in God for His plans for Anna were and are a blessing to me in the midst of Andrew's sickness.  God's will was not for Anna to live, but to go on to heaven, and her legacy was, is and will to bless others through her faith in God.  Her suffering is replaced with the joy to be with her Lord and Savior!

Please pray for Sean and Lisa as they grieve for Anna.  I would really appreciate it.  

Love,
Joe  

SAD NEWS:-(

Many of you know of the situation with a young gal named Anna (17), who we met at Children's and has struggled tremendously post transplant.  Well, Anna went home to be with the Lord this afternoon in the loving arms of her parents.  Jennifer and I were deeply saddened on her passing. I have known people we have met a Children's that have passed away, but this passing hit me like a ton of bricks! But our grief is buffered by the fact Anna is home with God in heaven. We uttered a prayer for her family and reminded each other Andrew will be okay and God has his best interest at hand.   Here is the most recent blog Anna's parents, Sean and Lisa sent out.:



No More Pink Buckets

Written 2 hours ago by Lisa Daley
Dear Friends and Family,

This is the last photo we took as a family Sunday afternoon holding the wooden cross Mary Bunch had given us that had been displayed on Anna's Iv pole for months. Anna loved this photo and even told the nurses of how much it meant to her while they cared for her. This cross was held close to Anna's heart today as she laid dying in our arms. Sean has this cross around his neck since her death.

Many events have happened since our last posting. We will share all of them with you at a later date because God's presence was so manifested in Anna's life in the end. This afternoon at 4:20pm Anna went to be with the Lord with grace, dignity and courage well beyond her maturity and years! While hearts are sad we are at perfect peace that our Anna was a gift from God and glorified Him to the very end teaching all about God's grace that is sufficient. While in pain and suffering in death, she never cried nor complained letting everyone know her trust in God and being brave for not only us as her parents but the many stem cell, physicians and nurses that wept tears today on behalf of Anna. 

Anna was at complete peace and died in our arms smiling back at us as we proclaimed what a brave and faithful servant she had been. We are returning home tomorrow without our Anna. Our hearts will be heavy to return to the house that was so filled with Anna. She even today ask if it was possible to return home one final time. We told her she was going to her eternal home with the Lord. 

Arrangements are in process of being made with Anna's youth pastor, Sterling. Anna before dying expressed her love for the church and ask that in lieu of flowers that memorials be made to First Baptist Church of Geneva. More details will follow at a later date and we will share more of her final hours special moments with you because in death she was such an example of Christ!

Thanks be to God for our special gift of Anna! As Anna said many times in her post, "God is Good!". ...... Even in death we have peace that truly passeth all understanding. 

"Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.". Phillipians 4:7

"I can do all things through Christ that strengthens me.". Phillipians 4:13

We hold those verses in our hearts and after nine months to the date hold these covenants of God to be true to our hearts and to Anna's example of living.

Praise be to God and thankfulness for each of you in our journey loving and supporting our beautiful Anna Michele!

God's blessings that Sue was with us till the end. She prepared Anna's body for us as her final gift of love and served Anna communion this morning with us in preparation for Anna's death.

Sean and Lisa 
_____________________________________________________________

It was no coincidence I met Lisa and Sean.  They have been great examples of what a Christian should be.  They showed a peace in the midst of extreme trials that passes all human understanding.  Their faith, hope and the trust they had in God for His plans for Anna were and are a blessing to me in the midst of Andrew's sickness.  God's will was not for Anna to live, but to go on to heaven, and her legacy was, is and will to bless others through her faith in God.  Her suffering is replaced with the joy to be with her Lord and Savior!

Please pray for Sean and Lisa as they grieve for Anna.  I would really appreciate it.  

Love,
Joe  

Tuesday, May 8, 2012



Scared 
But at Peace
It's 1am in the early morning and I can't sleep.  I believe it's due part in parcel due to worry about Andrew's transplant journey starting this morning at 6:30am at Northwestern Memorial Hospital for total body radiation.  Worry is juxtaposed with peace.  Sounds funny, huh?  How can one be worried and peaceful at the same time?  Well as a parent, I am worrying for my son who will be subjected to intense chemo and radiation, which will ravage his already racked body by multiple rounds of chemo, in preparation for his bone marrow transplant, but I know deep inside, God has his back.  

I have shared the following verse in my blogs at various times and it continues to give me a modicum of peace in the midst of the "storms":

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4:6-7

Moreover, I am comforted with what Jeremiah 29:11 states:
For I know the plans I have for you (Andrew)" declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
So, in the solitude of this quiet living room, I sit optimistic.  I sit knowing my God has a sovereign plan for my life and my son's life.  

Please refer to the last blog for specific prayer request.  Also, pray for our new friends the Lim/Park's.
Pray for their son, Connor, who has started the pre transplant process in preparation for his bone marrow transplant, which will happen the day after Andrew's bmt, also at Childrens.  To keep up with Connor's journey click: http://connorbmt.blogspot.com/

Thanks!
Joe
Andrew spending time with his cousin Dom, the day before his first dose of radiation.






Monday, May 7, 2012

Time is winding down as transplant nears.
I left you last with Andrew being in surgery Thursday.  Andrew's procedures went well.  The biopsy, the spinal tap and the dental work was all done in three and a half hours.  Andrew was suppose to get a c.t. scan after post op, but Andrew thought if he drank the 1 liter of i.v. contrast for the c.t., he would throw up.  So this coupled with Andrew being tired, we went home and Andrew slept until 10pm to wake up to go to see the midnight showing of the Avengers.  Boy did we love it!  Great flick!

So early Friday morning, we went to Children's again to get the c.t. scan, but hit another snag.  Andrew's port, which is located under the skin in the left chest and is accessed to put an i.v. in for various purposes and in this case to put i.v. contrast for the c.t., malfunctioned.  The port could not be accessed, so for the sake of time another i.v. was put in his hand and the c.t. taken.  We were suppose to meet my cousin Danny for a much anticipated steak and seafood lunch at the famous Joe's Seafood and Prime Steak House downtown with the whole family, but because of the complication, yet another planned event for Andrew had to be cancelled.  Might I remind you, this was suppose to be his "free" week before pre transplant.  

The stem cell team decided they need to check why the port was malfunctioning so they tried to access Andrew's port 6 times!  It was excruciatingly painful as I heard Andrew crying and begging the team to stop.  So after various nurses and finally a surgeon coming down to try, they decided to give up and to remove the port.  They believed Andrew may have just out grown the port placed three years ago.  Later that evening, the team decided to put in a triple line pic line in his upper right arm.  Andrew for transplant would have needed an additional pic with two lines anyhow for all the meds and fluids he would be getting in the transplant process.  If you can picture this, the pic line is three iv tubes coming out of a vein in his upper arm.  So, he looks like an octopus.  But for the removal of the port line, which is a surgical procedure with general anesthesia, we had to be admitted Friday night for a hopefully early surgical time Saturday.  Our wish came true and Andrew went into surgery for a quick procedure to remove the port and after getting back upstairs and sleeping a bit, we went home early afternoon.  Andrew pretty much has been wiped with all the general anesthesia and the pain and soreness of the port issues.  Andrew also started the experimental drug called, Palifermin, I mentioned a few post ago, to help keep the duration of potentially severe mouth sores he will get from the radiation shorter.

We got some good news Friday, in that the bone marrow biopsy showed no cancer.  But Andrew's counts still have not fully recovered since the last chemo.  Again, this is due to Andrew getting so many rounds of chemo that counts take longer to recover with each round of chemo.  

We were suppose to  finish everything Friday and have a restful few days, but because of the complications on Friday, we missed our last radiation oncology tests at Northwestern Friday afternoon, which means we will be going in Monday morning at 8am.  Ugh!  And then Andrew will start twice a day radiation at Northwestern Tuesday.

PRAYER REQUESTS:

-I ask you all to pray the Palifermin will shorten the length of his mucositis, which may be severe.

-Please pray for Andrew and for a modicum of peace as he starts the transplant process.  I can't imagine what's going in his mind.  I pray the peace that transcends all understanding will guard his heart and mind in Christ Jesus.  

-Pray for the success of the radiation and the high intensity chemo to help in the engrafting of the new bone marrow.

-Pray the bone marrow transplant will once and for all keep Andrew cancer free.

-Please pray for our family throughout this long and arduous journey of transplant.  Please pray for Jennifer and myself as we will be in the hospital with him 24/7.  

-Please pray God would provide for our family spiritually, mentally, physically and financially.

****SPECIAL PRAYER REQUEST:
I have mentioned a 17 year old girl named Anna and her parent Sean and Lisa, whom we have met at Children's.  Anna has had many complications post transplant and the side effects have gotten so severe that her life is in jeopardy!  She has had two emergency surgeries to stop internal bleeding and they can't seem to find the source of the bleed.  I happened to run into Lisa Saturday and she said Sean and herself have had discussions on Do Not Resuscitate plans.  Anna is that sick.  Lisa, Sean and Anna are all believers, but please not only for complete healing for Anna, but for Sean and Lisa as they agonize over their daughter!  Please spread the word and surround Anna in prayer.


Jennifer and I, quite honestly, are wiped.  We have been sensitive to things we usually are not.  Our emotions are frayed and we are on fumes right now and that frightens me as we have the whole transplant process in front of us!  May we recognize God's grace, which is abundantly on us and trust in His plan for this family.

Will keep you updated!

Joe





Thursday, May 3, 2012

Prayers Please and a Long Day!

UPDATE:
5/3/12 2pm

Andrew's counts came back good enough to proceed to the bone marrow biopsy, spinal tap, c.t. scan,  and dental work.  His counts are not completely better, but showed improvement.  Thank you for the prayers!  Again, the successive rounds of chemo have taken a toll in that it has taken Andrew's body longer to recover from the many rounds of chemo treatments.

Andrew complained it was hard for him just to walk to the bathroom yesterday and knew it was a result of low hemoglobin counts.  As he predicted,  Andrew needed two units of blood and two units of platelets this morning before the surgical stuff.  As I am writing this, I am in the surgery waiting room as Andrew is in the o.r. getting his bone marrow biopsy, spinal tap and major dental work.  The procedures will last some 3 hours to complete, with the majority of the time focused on dentistry.  

***As I have mentioned to you all, Andrew's transplant will not start on time if his bone marrow has cancer in it.  I ask you all to pray for the marrow to be clear and his count get back to normal as we get the preliminary results sometime tomorrow.

ANSWERED PRAYER!  The experimental drug, Palefermin, which we thought would be given to Andrew with a hospital admission this weekend, is being sent home with us today, so we can administer it at home!  Yes!  A few more days at home!  

Friday will be conclude the prep for pre transplant, as we visit Northwestern Radiation Oncology department for some more body mapping for start of radiation next week.  Finally!
On a lighter note, Andrew and I will be seeing the midnight showing of the Avengers tonight.  This was on Andrew's transplant bucket list.  Andrew also has requested Hooter's wings tonight, so right after the hospital, we will go and pick up some wings!  

Thank you again for being committed to prayer and thinking about our family.  I thank God for all of you!  

Love,
Joe




Tuesday, May 1, 2012

Another Long Week!!!!


Monday was suppose to be the day where Andrew got a bone marrow biopsy to see if his cancer is still in remission, which is a caveat to go to transplant and a c.t. scan to see if a fungal infection in his lungs found a few months earlier is gone.  But the blood test showed his counts have not recovered all the way from the last chemo and that is why Andrew did not get a biopsy yesterday.  I was a bit concerned, because I thought by this far post chemo, his counts would be back to normal.  I did find out with each successive round of chemo, the body takes longer to recover from the multiple rounds of chemo.  So Monday's schedule got switched around a bit.  Andrew was suppose to get a dental check up later in the afternoon, but due to the biopsy and c.t. scan being cancelled, we were lucky enough to get the appointment moved up to noon, where we found the dentist found 6 cavities!  It is crucial he get's his teeth in order so there won't be places for infection to fester while his immune system is suppressed.  Andrew's dental work will require 3 hours, so the dental and stem cell team are trying to get the o.r. for both procedures since Andrew will be out for the bone marrow biopsy.  Andrew is thankful, because he really gets anxious at the dentist.
6 Cavities!!!!!  Ugh!
This was suppose to be a week where Andrew had some down time, but we learned Andrew will be admitted for the drug Palefermin, Saturday and Sunday.  This drug has been used in adults to combat the effects of radiation and the mouth sores that come with the radiation.  It has not been approved for children and is considered experimental, but Children's got the okay to use it on Andrew.  PLEASE PRAY IT WOULD BE EFFECTIVE!


***I humbly ask you to pray the blood drawn, Wednesday, would show Andrew's counts are back to normal.  If they are not, the whole transplant procedure will be delayed.  Regardless, he will have a bone marrow biopsy Thursday or Friday.  I must admit I am a bit nervous with Andrew's count not being back to normal.  Please pray I would trust God in this time of uncertainty. 

Andrew is still in good spirits.  Andrew is eating the foods he craves before transplant.  His mother has taken him to eat steak and sushi and Jennifer has made an eclectic mix of food to satisfy Andrew.  Andrew and I bought midnight tickets to see the new Avengers movie Thursday night, which we heard is out of this world!  Thank you to those who have offered to take Andrew out or treat him to his favorite meal.  

It seems there is a lag from when I post a new blog update and when you all get an email notification.  I don't know why that is, but hopefully this post will get to you so you will lift up Andrew and our family in prayer.  

Thanks again everyone!  Jenn and I are spent emotionally, physically and spiritually!  Please pray we can understand God's grace is around us all the time and with that knowledge, find peace or a modicum of it.  
I don't  know if I have mentioned this in the past, but Jennifer and I love to go onto our small covered patio at the condo and just sit and chill We sit across from one another and just chill.  Tonight, it is raining a bit, but the temperature is cool and comfortable and the funny thing is we are chilling to the sounds of Earth Wind and Fire outside in the comforts of the patio.  It is a sight to see and hear;-)  At least we are somewhat at ease in the midst of the storms!

Love,
Joe