One Month Today

It has been one month today since Brian entered the hospital with relapsed AML. So glad that's behind us and Brian is feeling better. They are weaning him off of morphine and he is able to take pills by mouth, so that is also good.  Last night was a lot quieter without IV monitors beeping so often. Next challenge is getting regular food started again.  He has one major sore in the middle of his tongue that is still healing and something else in his throat that is still healing, but it is amazing to see the healing that has taken place.  His ANC (front line white cell defense) is coming up each day. Haven 't got the CBC results from this morning, but yesterday it was at 300. He is still pretty sleepy but should be less sleepy today with the decreasing medications.  Monday he is scheduled for a bone marrow aspirate which will determine the next phase of treatment. If the leukemia is in remission, with a low enough minimum residual, they will put him on track for transplant at the Huntsman Cancer Institute. If not, he gets another course of chemotherapy to try to get it in remission.  I hope it is the first option, but I am not looking forward to it. Time marches forward for us all. Ready or not, here it comes. God will be with us and with you. Thank you for your love and prayers!

Still Hanging In There...4 Days Later

The last few days have been similar; they have been tough.  About the time you think things are under control, things change.  Today the pain is staying under control with less morphine, and they upped the doses on the anti- nausea meds and he can sleep again, and better. Feeling constantly sick last night was like punishment, but since they fixed the meds this morning it is a much better situation.  He's sleeping without added oxygen, and sleeping hard. He is even looking better this evening.  Yesterday he had another CT scan and so far that and none of the additional precautionary tests that they have run have shown anything. That's so good. Although the counts are still down, the small points of progress make me think I might be seeing a little light at the end of the tunnel. 

Still Hanging In There

Some things can't be rushed, and it looks like recovering from chemo this time is one of those things. I am thankful for the progress however small, Brian is still heading in the right direction. He's on a morphine pump which makes him sleepy but also helps with the pain. A few more days and things should get better so I am told.  He got up and got a shower today, and tonight he braved it and swished his tender mouth with Biotene like the nurse wanted, to prevent infection. Thursday was the last time he put anything in his mouth...tried a bit of water and it stunned him. So this is progress! On a brighter note, we have a great view of the Salt Lake Valley and are hoping that by Thursday he will feel good enough to sit up and watch the fireworks. The 4th of July is Brian's favorite holiday next to Christmas. Just want to thank all of you for your love and prayers.

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!