Wednesday, July 26, 2017

Summer Update

We have been in full summer goof off mode so I guess I should update everyone with some our fun adventures...  

Grandma and Grandpa kicked off our summer with a impromptu hickman removal party.  (This way way back in May, so now you know how behind I am!) 
 Then Logan got a hold of my new camera... below are a few of his pictures...
 You would think I would take having my photo taken a little more serious since it rarely happens but no.  Not my style.





 First day that the pool was open.  Amanda, Kory and Logan wanted to be the first crazy people to jump in this season.  I'm told it was cold. 


Eric and I enjoyed a short anniversary trip to Niagara Falls.

We took so many photos of ourselves that we got a little silly.  : )



 We started on the American side then ended on the Canadian side.

... and got a little wet.



 We ended our day at a restaurant that rotates to make sure every table has a view of the falls at some point during dinner.  

 We stayed until they turned on the lights.  Very pretty.


The kids joined our neighborhood swim team again this summer...  (and Logan's hair is growing back nicely)  




 A couple of random photos I found...

 Amanda's girl scout troop bridged to Cadette.

But if you ask my kids, I think they would tell you that the best thing this summer so far was getting their passports!  We are planning a trip to Costa Rica and I think the kids are more excited about the passports that the trip itself!  : )


Logan is still doing great medically.  No major complications from the transplant and he is still in remission!  : )

Friday, June 23, 2017

Home from Camp

Logan arrived home from camp this evening.  We are hanging out on the back deck, enjoying the cool weather and hearing all about camp.  My family is back together.  Happy day!

Tuesday, June 13, 2017

Get Back To Work

Summer is in full swing here with swim practice every day and lots and lots of goofing off.  Logan's test results came back 0% leukemic cells but they are still watching him closely.  His endocrinologist has done lots of testing and determined that the chemo interrupted his growth so we are looking into some options to help him finish growing.   Other than that, we are keeping busy with projects around the house and Logan will be leaving for the Hole in the Wall Gang camp in Connecticut on Saturday.

There are benefits to your babies growing up... like getting help with painting!  I am embracing this new stage with open arms.  : )





Wednesday, May 24, 2017

Goodbye Hickman! You won't be missed!!!!!


Logan is back home today after having his Hickman tubes removed.  Here are the photos I took before his procedure...  as you can tell he is super happy to be there!!!


And check it out!  His hair is growing back!!!



It recently occurred to me that I haven't posted photos of him lately.  Hopefully this collection will make up for my oversight.  
One last photo of the Hickman to remember it by.  This has been a source of pain and anxiety for almost a year.  He dreaded the dressing changes and refused to lay on his stomach for fear of crushing it.  He would always prevent anyone (including health care professionals) from touching his chest and was super vigilant about cleaning it before allowing anyone to access his lines.  These two tubes have also prevented him from enjoying his favorite sport... SWIMMING!  Just a little more healing from the removal and he will be good to go this summer for whatever water adventures await!  

Tuesday, May 23, 2017

Lots of Tests

I know it's been awhile since I update everyone on Logan but there hasn't been a lot to update about until now.  He has been going to the doctor every week and catching up on school work.  That's about it until this week.

Yesterday Logan had another doctors appointment and his Kidneys are unhappy again.  The doctors are not sure why.  They are thinking it is related to his medications so they are having us hold most of his medicines and will recheck on Wednesday.  

Yesterday he also took his last anti-rejection pill!  It will take a few days for him to clear all the residual effects of the medicine, but soon, very soon, Logan will have NO restrictions!  : )

Tomorrow Logan will head into surgery to remove his Hickman Catheter (tubes in his chest) and have a bone marrow aspirate to check for leukemia.  We should get the results from that test on Friday or the following Monday.  This is a routine test.  The doctors have not seen anything suspicious on this blood tests so we expect this to be fine.  (They will be doing these "routine tests" more frequently since this is Logan's 2nd relapse)

Thursday, Logan goes back to the endocrinologist for an adrenal insufficiency test.  They suspect this adrenal glands are not producing their own cortisol since he has been on steroids for so long.  If not, this is something that will heal with time, however Logan will need to carry around a stress dose of hydrocortisone, both in pill form and in shot form, in case he has a traumatic physical event (broken bone, sickness, seizure...).    

At the endocrinologist last week he also had an exam and tests to determine if his growth rate and development has been effected by all the chemo.  We are still waiting for the results from those tests. 

So, like I said, something to update! 
  

Tuesday, May 2, 2017

Big Doctor Appointment

Eric, Logan and I met with the doctor yesterday to discuss where we go from here.  His doctor has been doing some research to see if we should do some post transplant treatment for the prevention for relapse.  We discussed the pros and cons of this new treatment but there isn't a lot of research available so we opted for the wait and see approach.  What has already been done to Logan may have already cured him of the disease and Eric and I don't want to expose him to more toxic drugs if it is not absolutely necessary.  Since he has relapsed twice and his cancer has become resistant to some chemo drugs he is in a higher risk category and the doctors will be keeping a closer eye on him for the next few years with more frequent bone marrow biopsies.  His next biopsy is scheduled for May 24.  Everything on his blood work to date is perfect.  No hint of anything abnormal.

Logan is SO ready to get back to a normal life.  He also asked his doctor if we could pull his Hickman tubes a little early so he can join the swim team this summer.  His doctor agreed!  When Logan gets his next bone marrow biopsy on the 24th he will come out of the procedure without his Hickman!!!!   He is super excited and while this means he will have to get poked with a needle every time he needs labs drawn it is a fair trade off in his mind.  

Logan has also started his tacrolimus wean.  This is his anti-rejection drug and the reason he has to avoid germs, mold and fungus.  He has a high white blood cell count but the anti-rejection drug makes his immune system kinda dumb and unable to do its job.  Once he is off the tacrolimus he can go out in public without a mask, enjoy his outdoor activities and more importantly... MOW THE YARD!!!  : )  



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.