Making Progress

Even though the last few days have been hard on Brian, there also has been some very positive progress: less to no fevers, and better blood pressure and oxygen levels. The mucositis is severe and very painful. It is the worst. But even that is showing beginning signs of improvement. It has kept him awake night and day with only short naps for days, but tonight he is sleeping for longer periods of time.  Thursday night Coach Ed Lamb came and visited Brian and that was so nice. Fortunately, Brian was able to talk a bit and enjoyed the visit. Brian is looking forward to playing for SUU, sooner or later - he is planning on it! Had family come today and he couldn't enjoy them much, but I think he was glad to just have them here.

Still Working Hard

The last few days have been trying, but Brian is still working hard to win the fight.  Fortunately, things are under control and he is still in his regular room in the ICS.  The doctors, nurses and pharmacists have been working hard to keep Brian as well and comfortable as possible, although he still has pain, nausea and fevers. He has been a real trooper with mouth sores from the chemo rampant from his mouth down his throat, so sad. His doctor explained that the medicines they give him are battling whatever type of infection he has, but until the full army (white blood cells) arrive, the battle cannot be won- only keeping the germs from taking over.  So, we are waiting for those counts to return and then Brian can recover. Today was a better day. He stood up for a while, did some squats (exercise) by his bedside and stayed awake for a movie on TV.  A nurse told me that she has noticed that the patients who get the sickest tend to have a better cure.  So there is the bright side. And, one more day behind him.  Thanks for checking!

Another Hard Day Done

It is expected that after chemo, when the counts are low, there will be some hard days. Well, Brian just put one more of them behind him. This morning the doctors said he could leave the PICU, so after noon he got back to his regular room.  After a little rest, he wanted a hair cut, so I gave him a short cut with clippers they have here. His hair is starting to shed a lot. It makes him itchy and it's messy. He then took a long awaited shower, and cleaned up. He looked nice.

The challenge today was drinking  about 34 ounces of contrast mixed in Gatorade for a CT scan with a throat covered in mouth sores and juggling nausea and pain meds just right to be able to do it.  What he accomplished was no small deal.  Finally managed to get it down, and had the CT scan at around 9 o'clock. He keeps running a fever and the docs want to find out what the cause is, and none of their other tests have shown anything. Now he is resting and hopefully can have a decent night.  He is trying to text but falling asleep.  I am sure whoever it is will understand...I am happy he is finally getting some well deserved time-"out"!

Update from the PICU

PIICU: Pediatric Intensive Care Unit, commonly referrred to as "pic-u" here at Primary Children's Medical Center...  as opposed to NICU, "nic-u" (neonatal ICU ) and CICU "C-I-C-U" (cardiac ICU).  As you can tell by this knowledge, we've been here too long.  This was all new to me just 9 months ago!

So here we are in the PICU. Private room with ante room for airborn germ protection.  I heard all these bad things about this place last winter, but it must have been over crowded then, because aside from the beepers going off on numerous machines, and happy chatter amongst the staff, this is a very good place to be.  Nurse to patient ratio: 1:1, almost without exception.  Three tiers of doctors: Residents, Fellows and Attending physicians, all very attentive and smart.  Aside from everyone dashing out for the code blue in the surgical unit last night, things have been pretty calm around here. Those always get ya at least just a little.

So, the update you were wanting...is good.  Fever is keeping relatively low, the blood pressure medicine was stopped and Brian is keeping it up pretty well on his own.  Not as high as they would like though so he'll be another night here, just to be safe. Then back to his room in the ICS (Immuno Compromised Services unit).  I'm good with that.  The pain from his mouth sores down his throat is getting ever so slightly better, Brian thinks maybe partly on it's own and partly from the Oxycodone.  Maybe these are signs his counts are going to come up soon.  He's resting very well, and texting on his phone now and then.  I'm feeling relieved and blessed. Thanks for all the thoughtful prayers!

Tough Day

The effects of chemo are taking a toll on Brian today. I am hoping he can avoid the ICU tonight. If you can remember Brian again in your prayers, it would be much appreciated.  He's hanging in there, and spirits are good.

We Have A Donor Match!

Today we had a visit from Brian's transplant doctor, Dr. Pulsipher, who told us that Brian's sister, Charlotte, is a match for his bone marrow transplant.  We all wondered who it might be, but hoping and praying at least someone would be the match among the siblings. So we're thankful and that's one less concern. All his siblings were willing and were tested, and we love them all so much anyway and thank them so much. The next step is to get the counts back up (time) and get another bone marrow test to see if it is far enough in remission. Brian is in good spirits, has lost some weight, but it is not noticeable.Hopefully he will get his appetite back in a few days. Thanks for checking on Brian!

Good News

Yesterday we got the pathology report, and the leukemia is still AML. This means that the surviving cancer cells that have come back have not mutated during the previous chemotherapies. If it had, it would have been tougher to get rid of. The second thing we learned is that the current chemo is working very well. Whereas Monday's labs showed 67% cancer cells (blasts) in the white blood cells, today's labs showed only 7%, Last night was the 5th and final chemo for a while, and considering it targets the bone marrow first, and those percentages, the outlook is very good.  Brian still was not eating for the most part, but managed a little Boost and a few strawberries.  He was guarding the edge of nausea much of the day and night. Considering what he just went through, I think he did a super great job! He slept through the night as well as one can with all the interruptions, and maybe by tomorrow he'll dare to try eating a little more. Yesterday 4 football players from the Utah Blaze paid Brian a visit and that was nice. He enjoyed talking a little football with them. Randy and Dennis are heading up this morning, so that will be fun, too. Thanks for checking up on Brian!

Better Today

After enduring the first three days here mostly uncomfortable, with fevers and neck pain from surgery for the central line - but thankfully sleepy, today Brian is showing improvement by staying awake, watching TV, playing games on an ipad and even taking a little nourishment! Two more nights of chemo and done for a while.  We will know if one of his siblings is a match by Thursday, and we found out that our insurance will cover the transplant at the Huntsman Cancer Institute, but not here...same doctor either place.  Just glad we have insurance that covers this.

Thanks for checking on Brian. :)

One Day of Hospital / Night of Chemo Done

Brian entered the hospital yesterday for surgery to put in a new central line (easy access to bloodstream without turning him into a pincushion), bone marrow aspirate and LP( lumbar puncture) a spinal fluid test for cancer, more platelets,  etc., and into a room for the prep for transplant.  The chemo drugs went in one after another about all night, till 5 am.  At present, he is comfortable and sleeping and that is good.  The anesthesia gave him a headache, but it seems to be gone today.  I feel that he is in good hands here at Primary, and they know and care about Brian. We were here not long ago, just checked out in February. So that's this morning's report.  Not an easy afternoon nor night, but it could have been far worse. Now he sleeping hard zzzzzzzz...

Yesterday was Brian's 3 month mark.  He has done so well, it was wonderful, like he was his normal healthy happy self. However,  in the last week or two, things have been going a bit downhill, but we were hoping that it wasn't serious. He had an appointment Thursday (June 6) in Salt Lake with the doctors anyway, so  we were anxious to see what was up.  So, it is with sadness that I have to report to you that the Leukemia has returned.  While the white and red blood cell counts were still good,  the platelets were down to 11 (down from 70, 90 and 120 on previous monthly checks).  They gave him a transfusion and set an appointment to return inpatient on Monday, June 10, for the first chemotherapy in preparation for a bone marrow transplant.  This is the option.  His siblings (6 of them) will have blood samples sent to the hospital and evaluated to see if any match 10 of 10 things they match up.  Hopefully, we will find that for him.  This experience will take fewer months but be more intense.  It is well - scary. You have been a great support through all of this, and I hope you will unite with us again in your faith and prayers in Brian's behalf.  Thank you all.