Day 8

Luke has a lot going on but in spite of all the issues it's a grand time at MDA! The blood and platelets continue to flow. Luke must be north of 20 units since arrival. He had platelets yesterday and 2 units of blood today. Still no white count.

Fighting the fungi and associated pneumonia. He's been dealing with chest pain. They stuck a camera and probe into his lugs to pull a sample. The first antibiotic they tried on the fungus Luke had a slight issue with. The issue was best expressed by Luke when he said "Mom I can't breathe". Needless to say they took him off that one after less than a minute. The next day he was given a different formulation of the same thing but this time they prepped him with Tylenol, Benadryl and hydrocortisone. The reformulated stuff he was able to handle but once a fungus establishes itself, it can be incredibly hard to get rid of. He is getting multiple antibiotics daily for weeks to come.

Temperature is up and down from normal to +103. Joints are sore. Appetite is good. He's been able to walk the floor at least once a day and has felt well enough to get the guitar out.

To be discharged Luke will need to stop spiking a temperature and get some white cells. His counts are supposed to bottom out 3-4 weeks after the start of the last round of chemo. 4 weeks will be next Wednesday - home for the 4th?

June 26th 5:AM CST

Luke was at MDA Friday (June 21) for blood work and received platelets. He got home around 2 pm, had dinner, he spiked a temperature and was in the ER at 10 PM. He’s been in MDA since. Temperature has been up and down. Blood counts still don’t appear to have bottomed out. Since Monday a week ago he has last received +12 units of blood and platelets.

White count is non-existent which makes infection is a big concern. Sunday he was experiencing chest pains. X-ray on admission showed pneumonia. A CT Monday night seemed to show a fungal infection. Luke has been on antibiotics since starting chemo. He got a isit from the infectious disease team late yesterday. Fungus can be a problem to treat so today they are going to put Luke under and get a sample of what is growing in his lungs to know what they are dealing with.  Luke will be resident at MDA for the rest of the week.

Computer is back from Apple so he is able to email and Face Book. Stop by and say hello if you are on line.

Dave

Update June 19th

Luke got to repeat the cyclophosamide and erwinia routine last week.  He was admitted Wednesday and was discharged Friday.  Instead of pushing the erwinia they gave it IV which seemed to help with the nausea.    

As expected his blood counts dropped.....like the proverbial rock.  He got a unit of platelets last Friday before being discharged.  Counts on Monday were abysmal.  White count was non-existent and platelets were way down.  Can't do much about the low white count but and he received a unit of  platelets.  Today (Wednesday) at clinic counts were still low so the blood goddess approved a unit of platelets and two units of blood should be prescribed as nectar.  Unfortunately the blood fairies did not start transfusing until after 1 PM.  Given the option of staying late or coming back down tomorrow Luke opted for staying late so he will be an MDA resident until at least 8 tonight.  He's back in for labs on Friday....expect he will need another unit of the red stuff or the chicken soup.  

Next round of chemo won't be until he recovers fully from the latest event.  Expectation is that will be another 2 weeks.  Who knows maybe with the break Luke will fell well enough for an evening at Rudy's or Genuwine!  He could use the break and the diversion.

That's the latest.  Waiting to see how quickly blood counts bounce back and hoping no infection sets in requiring another residency stay at MDA.

By the way,  Luke's computer is back with Apple to replace the logic board so he is without his primary tool for communication.  Try texting or calling - I know he appreciates hearing from anyone other than parental voices asking "how do your feel, did you take your medicine, are you drinking!"      

Update June 7

Luke made it home this evening.  He handled the cyclophosphamide (4 doses at 12 hour intervals) but after the last dose he got one dose of erwinia and with that came the nausea.

Luke gets the same chemo regime next week.  The cyclophosphamide will cause a big time drop in his blood counts.  Even though his counts have dropped some already, they are not expected to bottom out until after the next round, so some time next week Luke will he in the market for a transfusion and he'll need to watch out for a fever and the onset of an infection.

The AVN in Luke's ankles is giving him problems.  Both ankles are swollen and the right is painful to the touch.  For now there is not much that can be done with the ankles other than to try to manage the pain and hope his ankle does not collapse.  He was fitted with an inflatable boot to provide protection and additional support and crutches or a walker are optional.

Luke met with Dr. Worth from transplant after check in on Wednesday.  After presenting Luke to the department oversite committee, the recommendation was for Luke to continue with chemo and not undergo a transplant.  The chemo route was recommended for several reason; to the length of time Luke was in remission before relapsing and Luke's favorable response to chemo to date - they were able to get him into remission in 30 days and his Minimum Residual Disease (MRD) is negative.  Also considered by the committee was the risk associated with transplant.  Dr. Worth did not pull any punches, even with a sibling HLA match a transplant will carry some amount of Graft Versus Host Disease (GVHD) and there is not way to predict the severity.  Bottom line is dealing with the leukemia, the asshat, there is no magic bullet, no overnight cure, it's going to be a long haul.       

Luke was on the newly remodeled pediatric floor (just opened Monday).  The new room wow factor is LED lighting in the ceiling of each patient room.  You can select from the full spectrum of the colors of the rainbow to light the room. 

The new room was the good news, the not so good news was MDA has started a two year project of remodeling the lobby of the inpatient tower.  With the tower lobby shut down there is no direct route to the "F" elevator bank and the inpatient floors - visitors beware you will need to leave the security of the carpet to get to the F elevator bank!

Patrick from the MDA blood bank stopped by to say hello.  The crew from our May blood drive has the picture we took of them with Luke in a prominent place and they all want to know when we were going to do the next drive.

Will stay in touch.

     

Here we go again!

Sorry for the delay in updating Luke's status but he had a wedding to go to!

Luke is taking up residency at MDA again tomorrow.  Last time Luke received a high concentration of methotrexate which kept him in residence for a week waiting for his kidneys to clear out the residual MTX.  Luke will receive a high dose MTX again but with the issues he had with his kidneys this time Dr. Wells will likely cut down on the concentration.  Tomorrow Luke gets aristide and erwinia.  He's had both before, but like the MTX, the concentrations given will he higher.  Expected stay is until Friday but predicting his length of stay to date has not been great. 

This aristide/erwinia round was scheduled to start last week but Luke was able to finagle a chemo pass to attend Kendall's wedding.  He did take oral methotrexate for the week but the oral dose was a lot lower than the IV dose the previous week so overall his week was good.  

The good news from Luke's last visit with Dr. Wells was his minimal residual disease (MRD) was negative.  This means that minimal leukaemic cells were seen on a flow spectrometer.  The problem is it only takes one leukaemc cell to cause relapse.  With having relapsed once the ongoing chemo Luke will receive is designed to eradicate all the leukaemic cells.  With chemo not working last time this time the concentrations will be higher and over a longer period than last go round. 

A stem cell transplant is still in the picture.  Being MRD negative qualifies Luke for a transplant should he want to go in that direction.  With Luke responding favorably to chemo, the medical opinions on continuing with chemo or going with a transplant differ depending on who you talk with.  In ether case in the objective is the same, zero leukemia cells and no relapse.

Val and Addie to the ER

Stopping by to see Luke at his last appointment with Dr. Wells was Addison and his mom Val.  Addison was at MDA for a LP and while he was having the LP Val went over to donate blood.  Well Val got a bit light when they came up to see Luke in the clinic and Addie, who just had an LP, treated her to a complimentary ride to the ER for evaluation.

Kendall's Wedding was great.  It was wonderful to see friends and family and meet new friends and family.   Luke played and sang at the wedding ceremony and after much coercion he played and sang at the reception (and if you believe Luke really had to be coerced to sing at the reception I have a bridge to sell you).

Luke and Kendall

         

Luke, Mom Beth and Kate