Team Natalie V. Transplant Journey

24/12/2024

Wishing you all a very Merry Christmas and a very Blessed New Year! 🎄🎄🎄

29/03/2024

Wooooohoooo!! A day we have been waiting for. Our girl got most all of her first set of vaccines. She is just straight up a warrior! Six shots three in each arm at the same time. Just like always a smile on her face. She will not be able to have any live vaccines for at least 8 months. Today’s appointments went very well. She ended her day with therapeutic phlebotomy. They took 50 syringes of blood from her. To say she is worn out is an understatement. 

29/03/2024

So happy I was able to give a little back to St. Jude today. I donated double units of platelets. ❤️❤️ It’s the small things that matter most.

14/03/2024

My mom emotions are high this week. 🥹🥹🥹😭😭 This is the week 5 years ago that Natalie got diagnosed with having a plastic anemia. She has been through so so much the past 5 years. She’s a true warrior. This past week she has gotten her permit for driving 🥹🥹🥹🥹 again another emotional roller coaster 😬😬 Not only one is driving but her twin sister is as well.

12/02/2024

Haven’t posted in months. Quick update on Natalie! She definitely has a cold or something she can’t seem to shake. Praying for good numbers and results..

27/09/2023

Day +511

Where to begin! First and foremost she’s going to unalive me for posting this photo, but we love it so much! She’s back to being our goofy girl once again!

FINALLY, we are seeing progress on her Lymphocytes! Which means we are able to stop another medication, and start getting our vaccines!!! Whoooooo Hoooooooo!!!!!! It has been a very long road, but we are as close to normal as we have been in 4.5 years!

It is crazy to think, just a year and a half ago we couldn’t go a week without getting a unit of blood or platelets. Today, we have to give 500mls of blood a month! This is to reduce her Ferritin level in her liver. We will be doing this each month for the next year to help remove the excess iron in her liver from all of her previous transfusions.

We are so blessed to be in the position we are today. We could not THANK YOU all enough for everything! THANK YOU to the Doctors and Nurses that have treated Natalie over the years. From Peoria to Memphis and everywhere in between! From Amanda’s employers and my employers, helping us get through all of this, THANK YOU. Each of you have played a pivotal role in OUR journey, and for that, from the bottom of our hearts, we can not THANK YOU enough!!!

01/05/2023

❤️❤️

Day +363

It is hard to believe that it has almost been a year.... We are in Memphis this week for our yearly check up. This week is packed full of appointments, from Labs and X-Rays to Scans and Drs appts, it is going to be one crazy week.

Overall Natalie is feeling very good. She has a stubborn cough and continues to struggle with being COVID positive. This is not uncommon for transplant patients as their immune system is still developing. She has battled Pneumonia recently as well.

Of the results that have come back so far everything is NORMAL:

WBC 5.09 (Normal range 3.9 - 9.9)
RBC 4.16 (Normal range 4 - 5.2)
Hemoglobin 14.3 (Normal range 12 - 16)
Platelet Count 258 (Normal range 170 - 430)

We will update you all at the end of the week on how things go. We continue to look for the positive in each and every day! Thank you all for your thoughts and prayers over the last several years!!

With Love from Memphis

01/05/2023

Day +363

It is hard to believe that it has almost been a year.... We are in Memphis this week for our yearly check up. This week is packed full of appointments, from Labs and X-Rays to Scans and Drs appts, it is going to be one crazy week.

Overall Natalie is feeling very good. She has a stubborn cough and continues to struggle with being COVID positive. This is not uncommon for transplant patients as their immune system is still developing. She has battled Pneumonia recently as well.

Of the results that have come back so far everything is NORMAL:

WBC 5.09 (Normal range 3.9 - 9.9)
RBC 4.16 (Normal range 4 - 5.2)
Hemoglobin 14.3 (Normal range 12 - 16)
Platelet Count 258 (Normal range 170 - 430)

We will update you all at the end of the week on how things go. We continue to look for the positive in each and every day! Thank you all for your thoughts and prayers over the last several years!!

With Love from Memphis

04/03/2023

Good morning from Armington!

Day + 305!!!!! WOW TIME HAS FLOWN!!!!

Yesterday was our first Monthly visit with Memphis. Several good things have happened this visit! All numbers are stable, which is a good thing! We aren’t totally back to normal, but we are getting close!

We were able to stop the cidofovir, due to her T cell coming back in. This also helped us stop several of the other “support” medications. Medications like the magnesium, potassium/sodium phosphate, and lactobacillus. We went from taking 10 pills morning and night down to 2 in the morning and 2 at night.

We still are on blood pressure medication, and they are hoping that after her kidneys start to heal from everything going on, we can eventually stop that too! Hard to believe we are already almost a year from transplant!

We wish you all a fantastic weekend!!

21/01/2023

First off Happy New Year to you all..🎉🎉🎉 I feel this is the year we are going to be able to celebrate..

I feel like it’s been forever since we have posted.. Work for dad has been crazy so he is doing his all time best to go back and forth to Memphis for Miss Natalie’s appointments and working.

Our girl was home for Christmas. Such a Blessing to have her home and feeling well. Things were pretty low key and that’s ok. Her and Ruth got to celebrate their 14th birthday 🥳 and New Year’s at home. This was the absolute best present I could have ever received. I feel it was a true Christmas Miracle.

She had appointments in Memphis on January 3rd and 6th. Everything looked good and going well. Numbers were good and coming in. No real concerns. They got to travel home after a long day of appointments. She didn’t have to go back to Peoria for any appointments at all so she got to be home for two weeks without appointments. Her and dad left yesterday to head back to Memphis for appointments Today and now they are on their way home. 🙌🙌 Today’s appointments went smoothly and great as well. She was able to get the NG tube out. HUGE VICTORY 🎉🎉 She spent a lot of time doing a food journal. Not going to lie this is very nerve wracking for us. She eats well but still not good enough. She is stuck on eating steak. Lol great protein but she needs other foods to keep them numbers going in an upward trend. Dad said everyone was so impressed with how she looks and acts. So thankful they get to see my true spunky out going girl and not the sick girl they have seen for many many months. ❤️❤️

So we just continue to ask for more prayers. Prayers that she stays healthy and can continue to gain weight and not lose any. Also that she can continue to get her strength back. Thank you all so much for the calls text cards the out pour of prayers and love. We couldn’t have made it this far without each one of you guys. God is GOOD!! We praise him for answered prayers.

Much love from all of us! ❤️❤️❤️❤️

Amanda,Ed,Ruth and Natalie

22/12/2022

Memphis update:

Clinic went very well today! We get to come home for the holidays! Numbers are still low, but continue to improve!

Best news of all NO PTLD!!!! Biopsies indicated an bacterial infection instead of the PTLD! We are so grateful and extremely thankful, words can’t express how happy we are! We have been on an antibiotic since surgery, which should clear it up.

We have to return at the beginning of the year for check ups. Thank you all for all the thoughts and prayers! They and you are all appreciated!!

We wish you all an amazing holiday season!

16/12/2022

Post Op update:

Surgery went well. She should feel relief from all the sinus and ear pressure. The Dr that did the mastoid and ear tube portion said that he was able to drain a good amount of fluid from the area and it should provide significant relief for her.

The Dr that did the sinuses indicated some concern about the PTLD. We thought this had been ruled out earlier, but it’s coming back up again. There is some tissue that was growing back by her Tonsils and Adenoids that he biopsied. It can either be infectious or PTLD. Not what we wanted to hear, but he was able to get adequate amount of tissue for the biopsy.

If it is an infection then we will look at how to treat it. If it is PTLD, then we will have to talk to another specialist and potentially have to have another surgery, radiation and chemo. However, that determination will have to come from the Hemotology group.

There are a lot of if’s at this time. We don’t have many answers yet, but the answers should be coming in the near future. Please keep us in your thoughts and prayers. As soon as we know more, I will update you all.