"There is nothing easy about any aspect of battling this disease.
As parents you have so much responsibility and so little control!"
Yesterday was one of those long days---I was busy making a RMDH reservation and talking with Corporate Angels--When I emailed our social worker in NY about a reservation at the Ronald-- she asked if we were coming for anything else other than 3F8-- I said no-- and asked her if she knew anything about his HAMA test yet-- She said it will be late Tuesday-- I replied saying Tuesdays are long when you are waiting for them to call-- And she said" There is nothing easy about any aspect of battling this disease. As parents you have so much responsibility and so little control! So I just continued to go about my day trying to let go of the control I wanted!
We were waiting for a call from Sloan and hoping not to get a call at the same time!! I know-- does not make sense! But we have always been told no news is good news with HAMA-- if you do not get a call then you are negative-- but they will call if he is positive because you do not need to do the shots-- The "call" comes late-- and most NB parents will tell you you can assume after 6:30 you are negative with no call! So... we left about 6:30-- went to dinner and to watch a Charlotte Christian baseball game--- I checked my messages a few times while I was gone and there was nothing-- I figured he was negative-- BUT wanted to make sure-- so I emailed our NP this morning and she said-- NO-- do not start shots-- we were going to get a call this morning-- Grier is HAMA positive again-- He will be retested in 4 weeks-- He will continue on accutane-- he has 3 more cycles left- So, another lesson in the NB world-- do not ASSUME anything-- !
Now-- I am going to cancel the reservation and flight-- take a deep breath... and change gears a bit because we will be in Charlotte next week and not in NYC!
5 comments:
Hi Amy,
So sorry to hear you are not heading to NYC. I pray that the accutane is doing its job and that you will be able to go to back up to MSK in June.
love Isabel
Amy,
Sure wish some of your friends could bear the brunt of some of the "let downs" for you. Sorry to know Grier is not yet ready for another round of 3f8. We'll be praying that the next HAMA test is negative.
On a lighter note, enjoy the weeks leading up to summer...another school year gone by and children one full year older and so mature! I think of you often and know your love for life, while it wanes I'm sure, still shows itself in that contagious giggle of yours.
Tons of love from the the Givens family...
Dina
Amy,
I am trying this again. I do not like not being able to blog. I do not want you to think for one minute that I am not thinking of all of you. Please know you are always close to my heart.
Mary Ellen
Sad and mad about HAMA; however, you can continue to enjoy some more normal time and preschool/preschool playtime for Grier (and you probably!). You will get to enjoy some more ball games that you thought you would miss next week. Maybe God is telling your family to rest and he will take care of Grier until he is HAMA negative in 4 weeks!
Happy to see you in your "spirit-wear hawking" mode today at ETES. Glad you will be turning that over to Ashley -- one more thing to check off your never-ending list!
Love and prayers to you!
Betty G
Our prayers continue for you all and that the next HAMA test will be negative. May you all enjoy some additional time in Charlotte and may Grier enjoy some time with his playmates at preschool. Nancy Williams
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