We had a very interesting appointment with the BMT team today. The biggest news is that Reese’s NEWBORN VACCINES are scheduled for next Wednesday morning!! It’s happening!! I received her whole vaccination schedule and it will take two years to get her up to date (which is longer than I thought.) She gets 6 vaccines, at the same time, on Wednesday. They have a system with six people doing it at once, true story. They tell me that it will feel like one shot that way… which is better than 6. Our super nurse has planned a trip to the toy chest afterward, and my little powerhouse will be disgruntled, but she has seen worse. Two months later, she will get the second set of these same vaccines. And then two months after that, we learn if they are actually working. Even though Reese’s immune system appears reconstituted on paper, it’s possible that it just isn’t. And the only way to know if it is powered up enough to take immunizations, is to try. She won’t be eligible for the measles vaccine for another 18 months, this was also a surprise to me. I knew it was a ways out, but that’s a long time. But, we have to start somewhere, and the point is that we are STARTING!
I don’t think I have talked about phlembotomy here. This is because the idea of getting to this place always seemed SO FAR away. Like a dream. Let me back up a little.
Bone marrow transplant patients get a lot of blood transfusions. Each time Reese’s hemoglobin dropped below 8, she received other people’s red blood cells. Red blood cells contain iron. Well, all of these blood transfusions create a build-up of iron in your blood. This can lead to iron overload, because your body has no way to get rid of the extra iron. Eventually, the iron can build up in organs like your liver, spleen, and even your heart. And injure them over time.
Reese received 5-10 blood transfusions at Lurie before going to San Francisco. These were a result of disease progression and chemotherapy. When she arrived in San Francisco, they ran all of her labs on 4/17/18, and her Ferritin (iron) was 297. (Normal is 5-100.) This was not tested again until today. For a very good reason.
I dreamed of the day that I would be discussing Reese’s iron overload with my team. That sounds crazy, let me explain. No one cares about iron overload when you are in the trenches. Treating iron overload is a long term problem, a problem you don’t consider until you know that a patient is looking at a long term life. You see where I am going with this. Iron overload will progress into a problem someday, in the distant future. Well, now we CARE about the distant future!! And we are running labs to prove it, because the time has come to treat long term problems! Hallelujah!
During transplant, Reese received 34 blood transfusions.
Yes, 34 times Reese’s life was saved by red blood (give blood!) Now, knowing that Reese went into transplant with Ferritin (iron) already at 297, we weren’t expecting a “good” number today. (Lurie treats above 200.) The treatment is phlebotomy. For two hours, they would hook Reesey up to a machine that pumps OUT her blood. Then they throw it away and give her a month to rebuild and then do it again. Sometimes, for years. This slowly diminishes the iron build up. (There is also a pill, with brutal side effects, especially for someone who has battled the GI problems that Reese had. So phlebotomy was the route that Reese would have taken.)
Reese’s results came back at: 23.
Reese does NOT require phlebotomy, her iron levels, after all that, are NORMAL. Huh? The reason is not understood by anyone. I have a theory that isn’t ridiculous. Reese had active bleeding from her GI track for many months, my poor girl. Did her own body already rid so much blood that it got rid of the iron overload? The answer is, maybe. Regardless, this is one treatment that Reese does not need, we will take it! It was also a reason to leave her central line (port) in place for longer. Now that the team knows that she does not need this monthly phlebotomy, they are going to discuss the best time to remove her port completely! This will most likely happen later this winter, giving her immune system more time to continue proving that it is functioning off immunosuppression. Maybe February? (I pray that after this surgery, my little girl will never again need anesthesia. It is so terrifying, and she has gone under so many times.)
There’s more. Do you remember Reese’s prescribed diet of cookies?
I have been on a mission to help Reese gain weight since the steroid weight fell off in June. She has stayed consistent since then, basically the exact same weight. She eats A LOT, and she has for months. But her weight was really happy where it was. Then, a month ago, her doctor prescribed cookies. I know that sugar is fattening, I don’t live under a rock. But I really didn’t realize exactly how fattening. Reese gained a record TWO pounds this month! TWO. Our goal was 1/2 lb. She’s still a peanut, sitting at the 3rd percentile (this weight gain put her on the chart) but WOW! The power of sugar, jeez!! The healthy food is still there, believe me. It hurts a little to give her sugar each day, but the results are just what the team wanted. So we will continue with her super healthy diet, and add a cookie, cupcake, or ice cream each day. We realize that genetically, Reese is a slight girl. So is her identical twin. She will never climb too high on that chart. But getting her back to her fighting weight is important, and suddenly we are just about there! (She also grew taller again, Go Reese, Go!)
We have a date to meet Kate!! Reese and our family are driving up to meet Kate on the 26th, just before Thanksgiving. This date is so appropriate for finally meeting this angel who we are most thankful for this holiday.
After our bedtime prayer a few nights ago, Reese asked me if she could add “and God bless Kate” to the end. Indeed, God bless the stranger who gave my daughter the gift of life. Except, she won’t be a stranger anymore. We are so happy to welcome her into our family!
We are working on setting up a following date, a party, where family can come and greet Kate and her family. This is in the works. For now, we are focusing on the intimacy of Reese and Kate meeting for the first time, and facilitating this perfectly. One thing we know for sure is that they are a perfect match. It will be magical.
I would like to tell you about one of Reese’s GIFTS for Kate! Many of you have asked if you can share words of thanks with Kate. Well, we came up with a way that all of TEAM REESE can thank our greatest hero. We are compiling your thoughts and making them into a book that Reese will give Kate when we meet her! If you would like to include a personal note, a card, a powerful quote… please send these to my mom this week! She is my organizer! I’m so excited about this and I can’t wait to look through these! Nonnie’s address: Sue Latala 9 S Salem Ave. Arlington Heights, IL 60005
That’s all for today, it was a good one!!
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