DAY 14 in Hospital……..

Today marks 14 days in the hospital.  I can’t even begin to express to you the emotions that we have felt this week as we have watched Addi fight for her life.  She went from being responsive and breathing on her own to not being responsive and being on a bi-pap ventilator to help her breath due to respiratory distress.  We are so devastated at all that has occurred this week but we are also hopeful that this is just a bump in the road that God is going to use for His glory.  I have sat by Addi’s bedside for days looking at her chest making sure that it was rising and falling, I have held her hand as she thrashed back and forth and cried in pain, I have sang to her as she cried in pain to try and calm her and I have cried out to God to have mercy and to heal her.  Watching her suffer is the hardest thing to see.  She deserves to be out playing and having fun like a normal 2 year old but there is nothing normal about cancer!

The doctors are working so hard to get her stabilized and comfortable.  It is so much to even try to explain but right now they are struggling to balance out her fluid intake and output.  She has probably had 20-30 bags of platelets and maybe that much of blood.  She has had fluid overload and so putting in the drain in her stomach is great to get that fluid off that is causing her so much distress but when she is putting out too much then that is an issue too.  She has about 10 different IV lines going in her putting in different medicines and fluids.  I truly don’t know how they keep up with it all but they do.

Where we are right now is she is critical but stable.  She is in liver failure and respiratory distress caused by fluid overload, pleural iffusion and lower lobe lung collapse.  Her kidney is doing better and of course they are watching that closely.  She only has one kidney and when her organs were failing they were talking about dialysis but right now her one kidney is functioning. They had said her gut was shutting down and not sure the status of it at this moment.  It is on the list to discuss with her team tomorrow.  All issues she is having is stemming from the liver failure.  Some of her liver numbers are getting better and some are not.  At first the doctors said she did not have VOD because it was not a classic case of VOD but after further imaging and testing they believe that it is and is now treating her with difibrotide.  That medicine takes 4-7 days to kick in but it has been a struggle so far to even be able to administer the med.  Her platelet level along with some other levels must be in a certain range before it can be administered and she has a high risk of bleeding so it is also a risky drug but necessary for her recovery and survival.

She has been running a fever but they continue to manage it with ice packs and keeping the room cooler since she can’t have Tylenol due to her current liver damage and no Motrin due to the possibility of bleeding with her platelet count so low.  The liver is just eating up every bit of her platelets and really making things hard to manage.  We have a consult with the palliative care team doctors on Monday.  I broke down with her Oncology doctors this morning and told them that I would talk with them but I am not ready to give up on her.  They explained that although palliative care is good for end of life it is also good for managing pain and keeping her comfortable now.  Although they are doing that now, she will have a team that solely manages pain and comfort and nothing else and are the experts.  I agreed as long as they promised they were not giving up on her.  They promised that this is just extra care that she needs to be comfortable right now.

We have been completely overwhelmed at the outpouring of love, support and prayers.  There truly are not words that can describe how humbling it is to have literally thousands of people all over the world praying for this little girl.  It amazes me how she has impacted so many lives and how so many love her that don’t even know her.  God has been so good to send people to pray with us at just the right time.  It seems every time we are in a crisis a prayer warrior walks in to pray us through it.  To say this has been an emotionally draining week would be an understatement.  I have been here by her side for 14 days and I don’t plan to leave this hospital to go home until I am taking her home with me.  I can’t even stand the thoughts of going home and knowing she is here and seeing her things all over the house.  She brings so much joy to our home and her not there just does not seem right.  We would like to thank you for the continued prayers for Addi and we ask that you not stop!  We are waiting in anticipation for Addi’s miracle and know that God will see her through this difficult time.  We love and appreciate each and every person that follows Addi’s story and continues to pray.

Still continue to get messages regarding the following information.  I am sorry but I just can’t answer the hundreds of messages coming in.  I hope this helps.

Address for cards:  Please no gifts….Addi is so blessed and has everything she needs at this time.
Addi’s Journey c/o Leanne Masten
P. O. Box 99
Toccoa, GA 30577

Go Fund Me:
https://www.gofundme.com/prj5wqf8

T-Shirts:  Tonight this campaign will end at 12 midnight and shirts will ship on 3/12/19.
https://www.bonfire.com/store/addis-journey/

Facebook:

Tonight as I sit here at Addi’s bedside I am overwhelmed at how this tiny little girl has touched the lives of so many people. I sat and cried as I watched the prayer vigil in my hometown of Toccoa GA. God spoke to my heart and showed me how He’s working through her. Look Leanne at the hundreds no thousands of people who are praying. Look at the people who are coming together to pray and worship. Look at how this baby who most don’t even have come together as one body to pray for her healing and worship. Addi has impacted more lives than most people do in a lifetime with her smile, strength, courage and fight. I don’t know His plan for Addi but I do know she is blessed and is a blessing and has changed the hearts of many. I’ve gotten messages from so many telling me how she’s touched their lives. It’s overwhelming at times to grasp the impact that she has had on so many. She is truly a special gift from God!

I want to give a huge THANK YOU to Jessica and Kathy and all who were involved in putting together the prayer vigil in Toccoa tonight for Addi. It’s amazing at the number of people who came out and prayed and worshipped God. We are so grateful to live in a community that loves and cares for one another. Most who came out have never met Addi but yet spent their Saturday night praying for our princess. It’s so humbling to see the outpouring of love.

Thank you to every person who came to the vigil to pray tonight. Thank you to all who stopped and prayed at 7:00 all over the world and thank you to all who have prayed all these months for Addi and our family. Thank you to our amazing family who went tonight and represented Addi and our family. We are so grateful for your love and support. Thank you to my precious girl Alexis for being by my side today as it’s been a hard one.

We are so blessed even in the middle of the storm. Please continue to pray that Addi will fight and that God will bring her miracle quickly. It’s so hard seeing her suffer and I’m ready to bring her home!!! Warren and I are in awe of all that has been done for Addi. There are not enough words……