Update on Josiah Tuley

 

We had our visit with the oncologist today.  It went really well.  I'll try to put all the information here; but in case you're not interested in the many details, long story short: Josiah will have surgery on Thursday to put his port in, and his weekly chemotherapy treatments will start next Monday.   He will be kept overnight for the first few treatments for monitoring.  

Long story:  :)  

All about chemotherapy:

Josiah will start his chemotherapy next Monday, February 11th.  This will be the first of weekly treatments for 3 months.  This time period is the intensive treatment.  In 3 months Josiah will have another MRI and if all looks good, he will receive maintenance chemo every three weeks.  During his treatments he will be able to play and eat, and we will even be able to walk around the hospital if we want.  They also have a nice playroom in their office.  Basically, at each visit they will draw blood to check blood cell count, platelet count and sugar/salt levels.  If all that looks good he will have IV fluids, then his chemo treatment (about an hour) and more IV fluids following.  Because of the pituitary gland deficiencies, Josiah will receive the chemo treatment and then be admitted into the hospital overnight for observation.  If the first 2-3 visits go well, we will be able to do the rest of the treatments on an outpatient basis and can go home the same day.  

The purpose of chemotherapy is to stop or slow the growth of the tumor until radiation can be done.  In a small percentage of patients chemo is enough to kill the tumor completely, but it usually only stops/slows the growth.  Why not do radiation now?  In addition to killing the tumor, radiation may also kill all the surrounding good cells that are still developing, which would cause Josiah to have brain damage, resulting in a wide variety of disabilities.  If the chemotherapy will stop the growth until he is at least 3, but preferably 5 or 6, then his brain will be more fully developed and the effects of radiation will be lessened.  If the tumor continues to be aggressive (chemo not working), then they will go ahead and do radiation.  

The main side effects of the chemotherapy are constipation, hair loss and sickness.  For constipation, they will give medicine to help.  Hair loss: not much we can do about it.  Sickness: In general, they said that kids are much more resilient and usually do not get near as sick as adults tend to be.  While he may throw up, we were told that kids will throw up and then go right on back to playing like nothing even happened.  That was encouraging to us.  Josiah will also receive anti-nausea medication before his treatment, and we will have some available to us at home if needed.  

Another question we had was about this tumor being "slow-growing."  This tumor is a slow-growing tumor when compared to other types of tumors.  While Josiah's tumor grew seemingly fast to us, fast growing tumors can grow to three times the size it was originally in the same amount of time.  Josiah's tumor is still small enough to not cause any symptoms.  

Other Questions:

Insurance: We do have wonderful health insurance through Nathan's employer and have had no problems with coverage.  

Many people have asked about getting a second opinion.  Right now, we do not feel that is the best option for Josiah, or for our family.  We addressed this at the appointment, and we were encouraged to get a second opinion if that is what we felt we needed to do.  We were also told that our doctors pull from the same national database of protocols for treating cancer as all the other cancer centers use.  While the exact treatment plan may differ with each doctor, all will use the chemo drugs that is in Josiah's plan.  Our doctor alone had two or three treatment plans to choose from, and he and his team worked together to choose the plan that they felt would work the best for Josiah.  We are very happy with our oncologist and his team, the location is perfect with Nathan being at work only a few minutes away, and we see no reason to prolong Josiah's treatment.  Along these lines, if, for some reason this treatment does not work, there is a specialist in Chicago that we would most likely be referred to.    

What do we need?  Your prayers.  :)  We are truly grateful for our very large support system.  We appreciate each and every one of you!  While this is a very trying time for us, God's blessings are seen all around us, every day.  I look back at different decisions and steps along our way during the past four months, and I see God's hand in the details.  God has blessed us with our family, our friends, the amazing doctors that we have, with Josiah being with us, continuing to grow and learn and get better, and with our other three kiddos who are flexible and understanding.  It has not been easy by any stretch of the imagination, but when we first heard the news on Wednesday that chemotherapy was needed and I dreaded even the thought, just five days and lots of prayer later, I'm ready for the next steps and am at peace with all the decisions that have been made.  Please be assured, that when the time comes, we will let our needs be known.  Right now, we aren't sure what to expect or what we need and are trying to soak up all the information that has been given to us.  Thank you, again.