Results from last Friday's blood work indicate numbers are holding. Everything else has been going fine. Molly's appetite continues to get better and her nausea has subsided. The girls have settled in nicely at the RMH and weather has allowed them to get out and stretch their legs, particularly on the weekends. Checkups have been reduced to once per week (Friday's) until December 30, when she gets her 60-day post transplant exam. This will determine when she gets her broviac removed and when the girls get to come home for good. After prolonged soreness in his back, Ty has 100% bounced back from the transplant.
Best day ever!!! We went this morning for our clinic visit at the Buerger center. ALL of her numbers went UP!! We are now in a place where we may NEVER have to get a transfusion of blood or platelets again. Her numbers increased when we were there Friday but I didn’t want to jinx it. Since then they went up again..platelets are 45 (transfusion if below 10) hemoglobin 9.5 (transfuse below 8) and ANC is 1620.
But wait folks that’s not all... Molly has reached full engraftment!!! That means Tyler’s cells have come in and made themselves at home in her marrow and are now producing Tyler cells that will compose her new and improved immune system.( Well done Doobie thank you ❤️!) She is officially now fully Tyler, we are just waiting on the big biceps! 💪 😆 For now we remind ourselves that although she has a new and improved immune system it is like that of an infant with little baby cells that need to mature to be able to protect her. (hence the time here).
We are at RMH (Ronald McDonald house) and enjoying our space and ability to move about more. Mollys appetite is getting better by the day. We have found a Trader Joe’s we can drive to and we can walk to a basic grocery store and Panera so we are livin large and lovin life.
Our next milestone is at the 60 day mark where they do a bone marrow test to make sure it’s “Clear” of all unfriendly cells. I believe it will be and with the Christmas magic in the air (yes we have been watching the Christmas Halmark channel 😆) and all your prayers I am even more confident. It takes about a week for those results and then the Broviac comes out and we come home!!!
I hope everyone had a delicious Thanksgiving!
For those of you who are looking at beautiful white snow right now...enjoy!
The girls are packing up and moving to the RMH today. Its only about 1 mile away from CHOP. Hopefully, last night was the LAST night they will ever have to sleep in a CHOP room!🙏 Kudos to the docs and nursing staff. They all have been wonderful and have made the time there for the girls so much easier.
Although out of the hospital, Molly is still far from being out of the woods. Her ANC is around 1,000 but her immune system is still extremely vulnerable to infection. Her other numbers are doing fine but she will need tune ups (platelets, blood) every other day or so in the beginning. She is still dealing with coming off the Dilaudid (pain med) but is making progress every day. Hopefully within a couple more days, that is behind her.
Assuming all goes well, the girls will be crashing at the RMH for the next 30-60 days (then home). Happy Thanksgiving to all. We very much appreciate to continued support from everyone and are thankful to have such a wonderful group of friends, family, and even people that we don't know, that have been a part of Molly's Mission.
Day +25. Molly has kicked cancers butt and has been making record time with recovery this round. We may even set a hospital record! Her nemesis has turned out to be Dilaudid. Last few days have been rough with nasty withdrawals. We were surprised since she had no issues with fentanyl or morphine.
We seem to be on the other side of it now! 🙏🤞
After a dip in ALL her counts yesterday (ANC went from 800-600) there was a great rally with everything coming back even stronger today, 930 ANC.
We move forward with the game plan of transitioning us over to Ronald McDonald house on Wednesday. Today we found out we were able to get a room in the Bone marrow wing, previously not available. This will give us a small apt like space in a restricted access wing. It also gives us a special kitchen and garden area only for transplant guests. Both equate to less exposure to people during flu season👍😷.
Although we won’t be home for Thanksgiving ☹️ we will be able to cook for ourselves and from what I am told she wants tacos 😬😀. I am sure there will be a traditional dinner at the RMH (Ronald McDonald house) as well.
When asked what Molly is excited for when she gets out she tells them “to have a big cozy bed and sleep all night, uninterrupted!!” Keyword uninterrupted!! 😴.
Just a quick update....ANC is up to over 500. Meds are continuing to be either reduced or dropped. CT body scan today was clear except for what appeared to be some old crap originating from round 1. Eating and drinking were what the docs said was going to be harder this round. They were right, but Molly is starting to get some decent calories and liquids down (staying down is another issue). Overall, things are moving along nicely.
Day +17. Things are going really well. (🤫don’t want to jinx us). Mollys ANC continues to slowly rise (it’s 220), her bilirubin continues to lower 👍and we are mucositis free!!! Very exciting! Mild signs of GVHD ( graft vs host disease) on her palms and soles of her feet. It is one of the 9 that they don’t mind seeing since it means her new and improved immune system is working.
We have begun tree of life trimming, not to be confused with the holiday type, this one we take things off. Bye bye pain meds! (The PCA part is done, she will get step down doses over next 3 days. Next up cyclosporine, it will be replaced with a gentler oral med.
This coming week she will get a full body scan done. Once the ANC is above 200 for 2-3 days the WBC will find any infections and glow for us in a CT scan. If all clear we are done with the strong antibiotics.
Our next goal is the TPN ween off which we hope will help Mollys appetite get stronger. She is sampling some things...Panera Mac and cheese, not such a good choice🤢. We are working on more bland options. Craig brought down our supplies for a smoothie so we are ready when she is! This is the most challenging part of this phase, returning to eating. Once she gets there we move into phase two...Ronald McDonald house with Real beds, our own kitchen and more then one room...heaven-ish!
We have been entertaining ourselves with all the field hockey playoff games both D1 and D3 along with some of the soccer playoffs. For you Netflix fans we are finishing our binge of Frankie and Grace ( more me then her for this one). Next up, Mind Hunter.
Day +13. It has been a rough couple days but we are starting to see a shift in the direction of improvement. Mollys ANC hung around 40 since it’s arrival but today she went to 90 💪🥳.
We have concluded the slow ascent is good because even at only 40 all her mucositis got worse, especially her throat. ( that’s normal to happen). It seemed the WBC’s decided that was the place to start. We had a few really, really...really shitty days.
Fortunately they are doing their job, her throat is improving significantly and her bilirubin (liver marker) and creatinine (kidney marker) are starting to respond. 🙏.
Tyler is coming along as well. He was really pretty sore for several days. He tried to play basketball with friends recently but jumping is not a happy place for him, just yet! It will only be two weeks tomorrow so we anticipate he will be 100% real soon!
We have an ANC of 40!!! Tyler’s super cells showin up early!!! Hooray! Way to go Tyler👍🙏💪!
Well we know it will bounce around in these early stages but... IT’S HERE! 🙏❤️
We also know, as we have been here done this a few times, that things will be tough maybe even a bit tougher as it comes in. Her NEW super charged WBC will ascend on all the insubordinates that are wreaking havoc on Mollys body right now and kick some proverbial butt!. We are ready to fight that battle and get to the other side of this arduous phase!
After all, we have a strawberry banana smoothie waiting for us !!😀
Day +8. We are in the mist of the yucky days 😒. Mucositis is reaking havoc on Molly’s throat. She has it in the back of her mouth much like last time making talking, drinking etc unpleasant. Fortunately that discomfort responds to the Dilaudid. The throat pain however does not and we haven’t figured out how to “not breathe” which is the biggest aggravant.
We have had mild fevers and itching both are signs of engraftment ie cells making themselves at home, which is a good sign.
Unfortunately Mollys liver situation has progressed and what was 2.4 got up to 9.5. A lot of flip flopping of meds and adding in a new anti fungal and ursodill ( used to reduce bilirubin). Today for the first day we had a move in a good direct and levels went down to 5.4 however it is unsure if it is because of liver improvement or the ursodill 🙄. Hopefully the downward trend continues.
The new antifungal is causing mild kidney issues. We want the liver to improve so we can go back to original antifungal which we have been on since round one without issues.
Today we had two exciting accomplishments. Since molly has been here she has been craving a strawberry banana smoothie. Her current restrictions do not let us get one. But today we came up with a way to accomplish the smoothie!! 🥳 We were already allowed bananas ✔️ Craig’s job is to find strawberry ice cream without actually pieces of strawberry in it ✔️and we were officially granted permission to bring down a bullet!! AND ✔️. When she is ready we are too! Our second search also ended successfully with a new “love your Mellon hat” to keep Molly cozy as the weather gets chilly.
Come on day 10-14! Looking for Ty’s mighty cells to show up and bring some good mojo Mollys way!
Day +5. Here we go! Today they start checking counts again. Mollys ANC is zero and that is where we want to be. Well except she officially has no immune system so anything quietly hanging around will now start making a lot of noise.
First up is wicked mucositis reaking havoc Pain is pretty bad and Molly doesn’t usually complain. They did a round of oxycodeine with no relief and swallowing the meds is not good. Next up a dose of Dilaudid, now we are getting somewhere. After a couple rounds of IV dosing where she has peaks and valleys in terms of relief they decided to go with the PCA. That’s what we were hoping for since it allows a steady flow of a lower dose to maintain relief and she can press a button if pain spikes. We love the magic button!!
Time to batten down the hatches and ride out the storm. Here’s where we are hoping Tyler’s super cells allow an earlier arrival of ANC and we can head to calmer waters.
We are having some mild liver issues with increased level of Bilirubin. They have stopped her antifungal med to see if helps. 🤞🙏.
Overall not too bad..all expected things. Come on day 10-14!!🙏.
PS I managed to “acquire” 😉 a glider. I was going to skip having one but my duppa felt differently 🥴😀
The journey has started. We are in day 3 down the AML (Leukemia) road. I guess these roads aren't expected, nor can they be predicted. However, this is Molly's detour and the convoy is big and strong behind her. After a quick stop at Cooper Hospital, she is under great care here at the Children's Hospital of Philadelphia (CHOP). After getting acclimated and going through a million tests the first two days, the plumbing went in this morning and chemo is expected to start this evening. The game plan is 4-5 rounds of treatment. Each round is approx 25 days. The first ten days is chemo and the other 15 is for recoup. That is followed by 7-10 days at home. Obviously the plan can change but that is the map we've been given.