We rarely have the television on and even more rare this morning when it was on the Today Show. Ryan and I literally just sat down on the couch when the story aired. My eyes immediately filled with tears. Immediately, I was reaching out to the Treu family. St. Jude's in an excellent hospital, but you have to be accepted in order to get their services. Given we have two excellent hospitals near us they usually don't except families like ours... Knowing that St.Jude's has done research on this disease makes me determined for our doctors to contact them. I know Madison is the 14th child in the world to have this disease.. She is the most recent. Ryan and I also know the probability of Harrison and Maebry developing Monosomy 7, which is why we are VERY proactive with blood test and regular bone marrows... I pray the Treu family gets a hold of me for I'm interested in the tests/labs they are doing on their youngest son who hasn't had a bone marrow transplant. I have attached the link if you missed the Today show. http://www.today.com/health/siblings-fight-rare-blood-disorder-chemo-bone-marrow-transplants-t57776 LUNCH TIMEWe had an excellent lunch and more importantly lots of laughter. Beyond blessed to have Ryan and the kids here for the weekend! We missed all of our extended family, but made sure we kept our family traditions going.
Happy Thanksgiving! We pray you spent time today like us reflecting on your blessing this year... Enjoy your long weekend with family! Madison has blood work done tomorrow morning... Praying her liver and kidneys are in a better mood tomorrow then they have been. Also, praying our time in the hospital is short and sweet!
5 Comments
I came across this picture... So true❤️ Our lives have been forever changed from this journey and honestly I don't want to go back to "normal." This season has shown us how to embrace others, love like we won't be here tomorrow, let go of all the drama, and we have seen how faith will move a mountain or mountains! We have seen God's grace, love, and patience on a daily basis. Looking at our "normal" it was busy, easy, and mangeable. In that "normal" we can "do it all" and where we are now we can't do anything on our own. We need God! I went into the bedroom to see Mae cleaning her teddies g-button. I pray my kids always have the love, concern, and empathy for one another! HUGE PRAISE! Dr. Bhatla called at 7pm and according to the biopsies that were done on Friday all the GVHD in the esophagus is gone. Her gut still has inflammation, but looks better. We are still waiting for the viral reports, but a huge weight lifted!
Happy Thanksgiving family and friends. We will be celebrating this holiday as a family of five! Years passed I would be completely upset and disappointed to not be with extended family....this year thankful to be with Ryan and the kids.... Life has a way of changing our perspective. A day in the right direction! After last week I especially needed today! Madison ate and ate lots for her little body! Aunt Kathy has been such a blessing! Her presence has lifted my worries and stress. All of Aunt Kathy's cooking has done both of us good! I was able to get out for awhile this evening, which did this mommy some good! It involved a sweet tea and the new Adele CD! No matter how old I get, I feel so young with music blaring in the car!
Madison didn't have the best labs today so we will be back at Cardinal Glennon on Friday.... Praying for quick labs then back to the apartment with the family! Have a wonderful rest of your week! Madison became good friends with Elsa from Waterloo this hospital stay. Elsa is a true blessing and will be undergoing a bone marrow transplant in a few months. Elsa was diagnosed with AML at the end of October. Please be in prayer for her and her family! Her mommy is having a baby this week! Elsa's sister Claire was also a bunch of fun this weekend! Madison has been playing with her Little People Nativity since we got back to the apartment. She wasnt discharged till after 2pm, but at least we are out! Madison will return to clinic tomorrow and Wednesday, but hopefully we are back on schedule in the weeks to come. No biopsies were back today so I'm sure they will be tomorrow.
Aunt Kathy came to the rescue today! She played with Madison while I went over all the new meds we have on top of the old med list! Aunt Kathy has spent the afternoon at Walmart getting us groceries and items for our Thanksgiving dinner! The past six days have been horrible and so excited to be starting this week on a better foot! Please continue to pray that we all stay healthy and we are together for Thanksgiving! Aunt Kris sent me this verse yesterday and it is exactly what God has called us to do! Have a blessed week and continue to pray for all of our friends we have made on this journey! "Mom, Lets get out of the hospital!" No one will notice!" - Madison.
Praying we are out of here tomorrow! |
Archives
April 2020
Categories |