I know it sucks. All this waiting and still nothing definitive. Actually the FISH results came back and showed 90% blasts — which is really, really bad. The reason there is nothing definitive is because the FLOW and morphology both show 6-10%. Dr. Horton went to all of the labs/pathologists to sit and discuss what they are actually seeing, and all pathologists confirm that what they are seeing are really cancer cells, not weird immature cells that potentially could be cancer cells.
So, because there is such a huge discrepancy between the readings, we will continue on with the scheduled methotrexate on Monday as well as another aspirate/biopsy. The GCSF will stop, which might be the reason everything is so off because it increases new/immature white blood cells that can be interpreted as blasts or cancer cells.
The other bothersome/worrisome thing is, today’s CBC’s showed 61% blasts and over the past two weeks he’s needed daily blood products and is very tired — neither are a good sign of recovering marrow. But all of these effects could be due to the GCSF so more labs were drawn this evening to check cytogenetics and see if they really are cancer cells. The results from this test could be as late as Monday. It sucks, I know. BUT if his blast count keeps increasing between now and then, methotrexate and ARA-C will be given as early as Saturday.
I also told the doctors that if this doesn’t work I will go anywhere to find a cure (I actually saw one in Germany he might qualify for) — and asked for their help finding a trial and acceptance.
i continue to keep johnny and your family in my thoughts and prayers.
you have admirable strength.
carla isbell
carla isbell design studio
You are the strongest family I have ever seen. I hang on every word that you and your family have to say. Success comes with support from the family and those that you touch. Please ask and ask again! God Bless You! BHigh and the Family
We continue to pray and think positive thoughts for Johnny constantly! Thanks so much for keeping us updated during this extremely stressful time. Let me know if you need any assistance researching other trials or if the pedi/onc. research director here at our clinic might have any info. as well –
Lisa MOlina
I’ve been reading your blog for months now and being from Texas I can’t help but ask if you’re willing to travel to Germany for treatment have you thought about MD Anderson?
You and yours remain in my prayers and my thoughts.
Julie and Mike,
Fred and I have been keeping you and Johnny and the rest of the family in our prayers. We also have you on the prayer list at church. I have not checked the blog in a while and am shocked to say the least. We will just pray harder and I will give an update to other prayer warriors out there. You are amazing and only God can be supplying the strength to you and your entire family. Johnny is a fighter and I can see that you will go to whatever lengths you have to. If you need to start a fund for Germany I believe many would contribute.
Love and prayers to everyone,
Brenda Dove
Unlimited Prayers for the Romano’s. What incredible strength you have. God bless you and give you continued strength to keep searching for whatever it takes.
Connie Lawrence
I have grown to know your family–its strengths and the grace you show. I was asked to visit your site by Brenda Dove, if the power of prayer ever had an avenging angel it would be Brenda–my prayers are with you and your family. May God continue to give you the strength need to hold faith
Jules and Mikey,
I am praying and sending you all my love and support. Please call me if there is ANYTHING I can do. cy
I work with your mother-in-law, Pat, and get regular updates from her (I even feel like I know you and Johnny through Pat and also from the TV commercials). The entire Romano family has been and will continue to be in my prayers (especially Johnny) and you are definitely a family that is to be admired for all you have gone through and for everything you will continue to deal with. I pray for the best for Johnny and all of you and I am willing to do whatever I can to assist you in any way. God bless all of you!
As you know you all are always in our thoughts abd prayers. Keeping a open mind to other treatments is always wise. I would be doing the exact same thing if I were in your shoes. Johnny is “SUPER JOHNNY”….he is the toughest guy we know! We can’t wait for the day that he is skating and surfing again….Send JR our love and let us know what we can do to help from this end…
love,
Kim,Heath,Ellie,Hunter and Todd
I love you guys and praying always
Aunt liz
You do have amazing strength and faith. I saw that you guys were back in the big house after looking at the inpatient list and I saw why. I’ll be keeping you in my thoughts and prayers.