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.


-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.

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!


1 comment:

  1. Joe -- I am so sorry to hear about the trials and tribulations Andrew and you have had to deal with recently. It makes my heart ache to hear it...especially Andrew's pain. This is a tough patch in the road no doubt -- getting ready for transplant. I pray that the procedures will start to go more smoothly for Andrew, and, that he has minimal side effects going forward. I remember going to church with my sister on Christmas Eve, just 2 weeks before transplant. We couldn't go to mass with the rest of the congregation because of the risk of infection and the fact that she was so weak. But I specifically remember the priest anoiting her hands and telling her "these hands have so much more good work to do." I think that is true for Andrew. His journey is extremely difficult, but his work is not finished on this earth! I just hope Andrew can find an inner place that he can go to and stay connected to his healing, and leave the path of fear and anxiety behind!