Saturday, June 11, 2016

Families Are Forever

I know these two pictures look a lot a like but they are very different. The one on the right was a fun event, we had bailiff, (wearing bullet prof vests), lawyers, judges, random people just watching I guess.  Mr. and Mrs. Hardcastle were asked a bunch of questions about who they were and their marriage date, and if they were willing to take on all the rights and responsibilities of being Burton's parents.  That his birth parents had given up all their rights.  Obviously they answered all the questions correctly, because they were legally given their son.  What an exciting event.
     The picture on the left is from the Ogden Temple.  In this beautiful setting,  there were lots of Aunts and Uncles, Grandma's and Grandpa's, friends and we were told heavenly family too.  A very nice temple sealer, who gave words of advice to all of us, and then the little guy was brought in and held between his loving parents and with very few words said he, became his parents eternal son.  Also a most special and exciting event.  This was followed by his being given a name and blessing by his father, which was a very special blessing. Then food and visiting and cousins running all over the place.
     Watching the kids have fun and seeing all the love and support that Gordon and Jessica have is so heart warming and tiring!!!!
     Once again the Lord is watching us and his blessings are many.        

OUCH OUCH

     New update,  I went yesterday for what I again assumed was a regular MD appointment and then chemo.  I was told once again that my chemo wasn't working. 1st OUCH!  It was because of the symptoms I've been having of fevers and new pains, and being so tired all the time, but either way it's not helping.  So onto chemo number 3.  This coming Friday, if the LDS transplant team approves the new drug, I will start it.  I asked a few more questions today about the drug, and was told the first time I receive it, it will take about 8 hrs.  I will be sitting in a chemo chair for 8 hrs. hard to think about. I'll need to find a good TV series, some good music and take a long nap.  I guess there is about 4 hrs. of pre medications then the drug is started.   So each time after that it's only about 4 hrs.
     But the good news is I've been approved for the stem cell transplant.  I still don't have an actual start date, but I did have a Bone Marrow biopsy, second OUCH!  They drew a bunch of blood and I guess I'm moving forward.
     Boring I know.    
    
      

Friday, June 3, 2016

Counting blessing 10 x 10 (little toes and fingers)

     May 10 about 7:30ish PM  we received our 8th grand-baby.  Matt and Jenn had a beautiful little girl, Margot Lynn Hardcastle, 8lb 7oz, 22" long, and tons of dark dark hair, that everyone has commented on.  She appeared perfect to her parents, the nurses, the Dr. and the family, even big sister Charlotte expressed no concerns about her new little sister.
     But about 5 days later Matt and Jenn were told she had, what was called congenital Hypothyroidism.  So it's just that, a low thyroid level.  I didn't even know they checked for that, but after much research, done by the whole family, one thing I found out is that it's a test that's been done, as part of the new born profile, for 20 years.
     Okay we thought, so low thyroid, but again with Google, Web MD, or what ever site makes us all experts, we also found out that this condition needs to be treated quickly and with in a certain time frame to Prevent Permanent Brain and Physical Impairment.  So Okay again lets get her treated, well it wasn't happening and no Dr's were talking to Matt and Jenn.  They found out their Dr. was physically out-of town.  They were sent for more blood work to make sure the numbers were correct, in the mean time, Margot was the perfect baby, too perfect.  She was sleeping all the time, a sign of low thyroid in infants, we were all getting more and more upset and concerned.
     On Friday the 20th Matt called me and said the wrong blood had been drawn and now they  were being sent to the McKay Hospital lab to draw the correct blood sample.  They were frustrated and scared as was I.  So before I went for my Chemo I looked up Primary Children's Endocrinology dept, got a general number, dialed it and got the nicest young man on the phone.  He listened to me explain our situation and calmly but what honestly seemed firmly, told me to have a referral faxed to them TODAY, and gave me the number and told me that today or tomorrow morning their on-call Dr. would look at all the results.  He said the baby would get an immediate appt. with them and that things would be taken care of.  So I called Matt with the information and he started working on getting the referral sent down, which happened quickly. Then with-in a couple of hours of the lab being drawn, the Dr. On-Call called Margot's on-call Dr. and gave them the order for what medication and dosage she needed and what pharmacy it was at.
     The rest of the story is, with in about 2 days she was acting like a typical new-born, crying more, awake at night more, eyes wide open more, pooping more and just more active.  The day Matt said she was crying most of the day, I just wanted to cry myself and I didn't feel sorry for mom and dad, I was just more grateful than ever. 
     Our Father in Heaven knows each and everyone of us, he knows our name, he knows our needs and our situations as unique as we may think we are, he know them, feels our frustration and knows what we need. We may not think he does, but he does.  One thing I've learned from all this is he is listening, no matter how quite our prayer might be.  I've been told now for 6 months, "you are in my prayers or I've put your name in the temple roll, or I'm thinking about you", I've decided it never hurts to have others prying for us too, right?  But we have to be listening and with all the noise around us it's HARD!