A LITTLE STROLL IN THE GARDEN TODAY…..

I am sorry I did not post yesterday but it was my birthday and I spent the afternoon relaxing and spending time with my husband and kids.  We had a great time at Dave and Busters laughing, bowling and eating good food.  Thank you to my mom and dad for coming and staying with Addi while I enjoyed a day away from the hospital with my family.

Addi has had a rough couple of days.  She has not felt too good and has been one cranky two year old but that is ok….she is entitled!  We were able to get her out of the room today for a stroll through the garden and to meet a new friend who is also fighting cancer….Jaylen!

Follow Jaylen’s journey at https://www.facebook.com/jaylensjourney18/

I did not want to tell of all the events of Friday because I did not want to distract from the good news of her having NO EVIDENCE of DISEASE.  On Friday Addi had the MIBG scan and while she was sedated she also had a bone marrow aspiration for biopsy.  She was also supposed to get the drain tube hole in her side sown up while she was sedated but the doctor doing the procedure did not feel she was ready for that with the amount of drainage coming out and into the temporary bag that had been attached to her side after the drain tube was removed from her side.  So the doctor ended up putting in ANOTHER drain tube in her side.  There was some discrepancy from the doctor that did this procedure and the Hepatology team that she needed this bag SO they have tried keeping the bag clamped off to see if Addi’s body would naturally absorb all of the fluid.  Well, it hasn’t and she has been in a good bit of pain from the procedures and from the fluid building up.  I finally insisted that the drain be opened so she would be more comfortable and a lot of fluid drained.  What this means is the liver is not absorbing the fluid like it is supposed to and could delay her going home.  The doctor said it is possible they will let her go home with the drain but we will not know until Monday.  It is a fine balance of fluid intake and output and one that they really have to monitor closely.

We have been praising God after finding out Addi has no evidence of disease.  Neuroblastoma is a BEAST and because she is stage 4 high risk, she has a 60-80% reoccurrence rate so it is crucial to keep her cancer from returning and to be very diligent in her maintenance treatment to keep it under control and continue to be free from disease.  The doctor that is rounding this weekend and next week is one of Addi’s doctors and specializes in Neuroblastoma so he really knows his stuff.  He said that next week we will meet with Dr. George (her regular oncology doctor) and discuss her plan of treatment going forward.  Their goal for Addi was to be cancer free and in remission when she went into stem cell transplant and why she had to do more chemo and immunotherapy.  So now that she is cancer free and where she should be in her treatment plan, we can now discuss her maintenance treatment to permanently kill this cancer and keep her in remission for LIFE!  So although she is cancer free, her journey does not end there.  Now we must keep her CANCER FREE!

The plan BEFORE liver failure was for her to be cancer free at the end of her 5 cycles of chemo and then to go into stem cell transplant and have 2 transplants.  Then she would have radiation and then immunotherapy for 6 months.  Not sure exactly what her plan will look like now but Dr. Cash said it could be oral chemo until her body is strong enough and her liver has healed enough to endure stem cell transplant.  She would be watched very closely to ensure she did not go into liver failure again.  Then continue with radiation and immunotherapy.  Her entire team of doctors will discuss this the beginning of next week and will have a plan for us on Wednesday at her appointment IF she is home and can go to this appointment.  It is so important to keep her cancer free because the return of Neuroblastoma usually is even more aggressive than at initial diagnosis.  WE CLAIM CANCER FREE for life and that in about 8-12 months, cancer will be a thing of the past and little Addi can continue life as a care-free, cancer free little girl!

PLEASE continue to pray for Addi and that this liver will heal completely and that she will remain cancer free so she can live the life God intends for her to live.  Right now she is so uncomfortable and has a ways to go before she is 100% but I feel confident when we can finally get her home that she will begin to eat and walk.  Her little legs are so tiny and she has lost so much weight.  We are so blessed with Addi’s life and through this journey with cancer God has shown himself to be faithful and merciful over and over.  There are days that I have felt God has not heard our cries and that He is so far away and then He so gently shows me that He is near by a simple gesture of love from a stranger, an encouraging word from a friend, a feeling of peace after a rough day, a sweet smile from Addi or a bible verse He lays on my heart to read.  THEN he shows that miracles do still happen by saving her life not once but several times after going through liver failure and then by the great news of her being cancer free!  I am in awe of God and all He continues to do through Addi’s journey with cancer.  Even through the hard days, we find Joy and happiness.  We CHOOSE to find joy and when you choose joy even though the circumstances are not very joyful, you can’t help but find PEACE!

Last day of this t-shirt campaign….shirts will be shipped on 4/1/19.
https://www.bonfire.com/store/addis-journey/
Much love, joy and happiness to you all~~LaLa