I’d like to start off AGAIN for thanking all of you.. but this time for sticking with me three days in a row and listening to my husbands story. My main goal with these 3 posts was to give mainly the events that took place. I didn’t want to get into my feelings or experiences or anyone else’s pain. I didn’t want to touch on how hard it was for Ian and Jax and how they acted out. That is an entry that I might make someday but far too depressing to tap back into right now. This little series was meant to serve as an update and be told as positive as possible.
”When will we know if the transplant worked?” “What comes next?” Those are two questions that I have been asked almost daily. And today, ladies and gentlemen, I finally have an answer.
The first test that Joey had was a bone marrow biopsy on Day +30. This biopsy was WAY different than any biopsy he has ever had. It was done in a procedure room at COH with NO radiology imaging to help guide the hands of the provider telling her where to dig in, literally. He had no IV set up for them to inject something to relax him or to ease the pain. And, I actually got to be in the room and watch since there was no radiation exposed.
Now I just want to say how bad ass the outpatient Nurse Practioner was. She used her hands to feel and pinpoint where to biopsy. She didn’t need a machine to tell her where to go. Plus, she was able to shut Joey’s fear and anxiety’s away and she made fun of him a little bit too. Which was super awesome (Sorry babe)!!! He was amazing & she was amazing and even though it hurt my heart seeing the size of those needles going into his iliac bone.. I was amazed by the entire experience.
So that biopsy was the first step in checking the status of the disease. It was meant to assure us that there was no disease in the bone marrow (there never had been to begin with) plus it would break down the DNA as well. The hopeful results would be that there was A) no disease and B) at least 96% of Scooter’s DNA to be found in JOEY’s bone marrow.
The results were A) clean bone marrow showing no disease and B) Scooter’s cells had taken over 99.94% !! Which means that not only has Scooters cells grown and multiplied in Joeys body but they basically have taken completely over. This was the first success in the process. GO SCOOTER! Joey will have to repeat this exact biopsy at day +100 and at day +365.
A couple weeks ago Dr. Saheebi ordered a PET scan that is usually done between days 50-60. She explained her expectation for this PET was to be completely clean or the same as his last PET prior to the transplant. She continued that she did not want us to be discouraged if this test showed a little disease because it could take up to 5 months to get the full effect from the transplant. We decided to keep this test a secret from all our family and friends. Every single PET scan Joey has had, has been bad. In the almost 2 years of fighting this disease he had never once been completely cancer free. Some treatments worked, some failed, some kept it the same but none of his treatments ever cleared him completely.
You can probably guess why he wanted to keep this to himself. It’s been bad news after bad news and it’s been heart breaking. He didn’t want to get anyone’s hopes up just for them to be brought back down. Especially if there was a chance that he just needed more time for it to work.
On Tuesday, October 17th Joey had his PET scan. It was day +48 and also Madonna’s birthday. And, if you know Madonna well enough you know the importance of a date with the #7 in it and how it represents a sign from her mom in heaven. After his test, Joey ripped off the bandage and tape from the IV injection and surprised his Mom at work with flowers and a birthday card. Then two days later we return to see Dr. Saheebi for results.
Out of all days, this was the day that Dr. Saheebi was like 2 hours behind. We waited in the waiting room for about an hour, both nervously killing time on our phones. Then once we are out in a room, we waited another hour or so for he doctor to come in the room. And what do you know, the computers were not letting Dr. Saheebi log in to the Kaiser system to retrieve the results. She even went into the doctors office and still didn’t work. She called over to the Kaiser Sunset nurses to give her the results and even they didn’t answer. As a last resort, she sent a message to Dr. Farol (he took over Joeys case and treated him at the beginning of this process but then went back to KPLA when his rotation was over).
After a hundred apologies she promised to call us with results. And right as we are about to walk out of the room, her phone goes off nice and loudly. It was Dr. Farol with the results…
”Negative.” She said out loud with the biggest smile on her face. To which Joey asks, “What does that mean?” And she shows us her phone as she opens up the link.
“COMPLETE RESOLUTION OF NODULAR DISEASE”
To which she translated…
”YOUR CANCER IS COMPLETELY GONE!”
Not a dry eye in the house I tell ya! We cried, she cried and she hugged us as we all marveled at this victory.
I truly believe that God put every single step in motion for this day. He made Scooter the match, he helped put the right doctors, nurses and Np’s in his path. He helped me find a home in a new church that has revamped my faith in Him and his power. God has blessed all of us with this miracle. As my Pastor says, they are passionate about the life-giving and life-changing word of God. Since I took my first steps into that church, it has been nothing but life-changing and now LIFE-GIVING! I literally can not be any more thankful for any single blessing I have received in life.
We owe so much to all of you who continue to pray for Joey and his healing. There is no way one can’t believe in the power of prayer after this. Thank you all for never leaving our side and for always keeping us in your hearts.
What comes next? We continue to pray for Joey as he recovers from the transplant and that he never experiences a major flare up of Graft vs Host disease or that no infection too big hits him during this time. He is officially CANCER FREE and hopefully that makes his recovery much easy to bare!
We spent the weekend spreading the good news to family and friends. Joey faked some out and led them to believe our news was pregnancy related. He also tortured others and gave all the crazy statistics and mortality rates and scaring everyone. It was amazing to watch Joey tell his news to the people he loves. It’s been amazing watching him read everyone’s comments since he broke the news yesterday. Here are some photos I took while I was recording. They aren’t the best quality because I was also taking a video at the same time. But amazing nonetheless!