Wednesday, April 26, 2017

Kidneys Are Working

Logan's doctor appointment today showed that his kidneys are happy and back in working order.  He is still on extra fluids and we are holding some (but not all) of his meds.  More lab work on Friday.

Small Set Back

Logan had a rough weekend with multiple meds coming into play making him feel bad.  His Fentanyl patch wean (his pain patch) ended on Sunday however Logan had symptoms of withdraw.  We had a doctors appointment scheduled for the next day so Eric and I gave him Oxycodone and Morphine at regular intervals to help ease his withdraw.  He also laid on the couch all day Sunday with no energy and a headache (even with all the pain meds on board).  We were thinking this was part of his withdraw however after getting to the doctor office and labs were drawn we discovered his kidneys were angry and not working properly and his tacrolimus (anti rejection drug) was 3 times higher than his therapeutic level.  The doctor think the tacrolimus was the source of the kidneys issues and headache.  They are holding 4 of his meds to give his kidneys time to heal and he is back on IV fluids to help flush out his system.  They also think he was having withdrawn from the Fentanyl (which would explain the nausea and stomach cramps) and put him on scheduled doses of Oxycodone for the next few weeks.  Because of all this drama we are heading back to the doctor today for more blood work to check on his kidney function and this tacrolimus levels.  Just a small set back and we will return to Logan's regularly scheduled healing soon.

Thursday, April 20, 2017

Routine

We are all getting into a routine with school and work with only one month left of school.  Phew!  That took a while!  Logan is still on many restrictions but we have a plan for tapering off his anti-rejection drug.  Once that is no longer needed many of the restrictions will be lifted.  If all goes according to plan, this time next month Logan will be completely free of the Tacrolimus (anti-rejection drug).  He is hoping to do all his favorite things this summer like swim team, camping, hunting, target shooting, 4 wheeling, and kayaking.  Listing out all his favorite activities makes me realize my boy is an avid outdoors man!  I guess I have raised him right after all.  : )  He also has plans to attend 2 camps for cancer survivors this summer so he is planning a very exciting, fun packed summer break planned.  As of right now, he is on track to go back to school in August when classes start back up.  

His doctor keeps telling me how wonderful Logan is doing.  So far they haven't detected any permanent damage from the chemo and transplant.    His new bone marrow is doing a wonderful job cranking out red blood cells, white blood cells, and platelets (much better than his last transplant).  He's going to have a few new scars when all this is done but we are calling them battle wounds.  It sounds more sexy and is very accurate for what he has gone through.  I hope it is smoothing sailing for him from here on out because he has been through so much in his short life but he has been a trooper through everything.  I've said before that Logan could have made this very difficult for everyone by whining, complaining, and being uncooperative.  He was certainly entitled to do so.  However he took everything in stride.  Even on the days he was feeling his worst he was a kind and considerate child.  I'm so proud of my son.  When I grow up, I want to be just like him.  

Tuesday, April 11, 2017

Bone Marrow Clear

Logan's bone marrow biopsy results are back. The bone marrow is clear! No leukemic cells were found.  His blood work is good and he has been reduced to once a week doctor's appointments!

Wednesday, April 5, 2017

Tomorrow is a Big Day

Logan goes in tomorrow for a bone marrow biopsy.  This is his first biopsy since his transplant to check for remission.  We should know the results Friday or Monday next week.  

We have been keeping busy with managing doctor appointments, meds administered at home, school work, and work work.  Logan is still not really able to get out of the house but his health is continuing to improve and we have modified his bed so the dogs can sleep with him (and he won't have to manage the stairs to his loft bed in the middle of the night for those frequent bathroom trips.) 
 Yes, this is a couch in front of the bed.  Logan picked out this couch himself and is very proud of it (and it's super comfy) so don't judge.  : )  

 The dogs can choose to sleep on the bed with Logan or on the couch right next to Logan.  
Since Logan has had a loft bed for many many years he is really enjoying the novelty of having his dogs in bed with him.  And I think the dogs like it too.

I hope you all are not bored with all the dog pictures and videos but that's about all the entertainment we have around here.  Here is a little video of a new game Logan inventing with the dogs.

Tuesday, March 28, 2017

Catching Up

Logan is currently going to his hematologist twice a week and has an additional appointment with an ophthalmologist on Wednesday afternoon to check on some vision problems he is having.  At his last clinic appointment on Monday his blood work showed a significant jump in white blood cells that had is doctors concerned.  They did some blood cultures to look for a possible infection that is being masked by his other drugs.  So far no word if anything has grown out of the cultures but they give it a full 48 hours before determining if they have any growth.  He is still fighting the BK virus however the bleeding in his bladder is significantly improved.  He is still lugging around a giant bag of fluids to keep him super hydrated however the doctors are allowing him a break from the fluids overnight.  

Logan is happy to be home and starting back up with his school work.  He has taken a full two months off from school during his transplant and has a lot of catching up to do.  

It seems like time moves faster here at home than in the hospital.  I can't believe it's been more than a week since I updated the blog.  Just know that no news is good news and I will do my best to update when I can.  He still has a long way to go, but we are definitely on the road to recovery.  

Monday, March 20, 2017

Persuasive Young Man

We are back home again.  They released Logan from the hospital this evening after his persuasive discussion with the doctors as to why he would be better off at home rather than in the hospital.  They wanted to keep him for observation and IV hydration while they waited for some test results to come back.  Logan was worried about a neighbor we had at the hospital that had the flu and was willing to volunteer his parents to drive him to the clinic tomorrow and Wednesday for necessary blood work and check up.  The doctors, while not happy with the arrangement, could not deny my child his greatest wish...  to sleep in his own bed.  Logan has agreed to 24 hour IV fluids here at home so he will stay well hydrated while his body fights a virus causing some bleeding in his bladder.  They believe that the bleeding is from the BK virus that was laying dormant in his body and flared up when his immune system was weakened with the transplant.  Since he is on immunosuppressant drugs the doctors will watch him closely to make sure he doesn't experience any further complications from the virus.      

Therefore, Logan will be lugging around a backpack loaded down with two IV pumps and a few pounds of fluid as part of his agreement with the doctors today.  His rash responded well to the IV steroids and they have added a topical steroid cream to keep the GVHD in check.  Even better news, his body is making lots of red blood cells, white blood cells, and platelets!  Hgb was 11.9 this morning, ANC is over 5,000 and best of all, platelets jumped from 56 yesterday to 67 today even with all the bleeding!  No transfusions needed!!!!