Thankfully, there is no sign of CNS relapse or remaining solid tumors. What a relief, considering Ava was complaining of headaches and even vomited. Praise God for such great news!; it's hard to constantly be wondering if her symptoms are an indication of worsening disease, so for now we are grateful that her CNS looks clear. However, her MRD is up to 0.2% (from 0.09%), so the very fact that the levels are increasing at all can be disheartening. Still, we do not take these praises for granted and give thanks to the Lord for His mercy and grace.
The last couple days have been filled with concern around Ava's kidney function, as she has been retaining fluid and not able to completely void her bladder. Her creatinine levels kept increasing, indicating possible worsening renal function. The doctors were puzzled as to the cause of her abdominal pain & decreasing renal function. The concern was that the cause could be multi-faceted, so they wanted to proceed with caution, not jumping into any one remedy with the expectation that it would effectively address Ava's overall health issues as a whole. As Ava's creatinine went from 2.1 to 2.6 overnight on Saturday, to 3.4 on Sunday afternoon, the decision was made for Ava to have surgery. The surgery would allow the doctors to see if there were any blockages in her ureter(s) and place stents in her ureter(s) as needed. The surgery revealed blockages in both ureters near the bladder; a stent was successfully placed on the right side, but the left side was inaccessible so Ava will have another procedure tomorrow (Monday) to have a direct drain placed in the left kidney. They were also able to place a catheter to aid in urination.
Already, Ava is looking better and is being relieved of a decent amount of fluid. She was put on nasal cannula oxygen earlier today to help boost her oxygenation since it dropped to the low 90's. Thankfully, a chest x-ray didn't show anything of concern, so any difficulty breathing may have been due to the weight of the extra fluid. In the meantime, Ava is feeling rather uncomfortable with these drains in her as well as from the stent/catheter placements.
Hopefully, the right kidney drain placement tomorrow will adequately drain the rest of the fluid, and resolve her previous symptoms. It is still a mystery as to what caused all of this in the first place. In the meantime, Venetoclax has been held so as not to compound the situation in any way and to allow the medical team to more accurately determine what's going on. This means that Ava isn't getting any treatment right now to combat the cancer, which is always a little nerve-wrecking considering how aggressive her disease can be.
While the Lees were in Chicago, they had the opportunity to meet with the cancer team at the Children's Hospital of Wisconsin in Milwaukee to discuss Ava's treatment options and haploidentical BMT in particular. They ended up making the difficult decision to transfer Ava's care from Seattle to Milwaukee as soon as possible. The main reason is to be closer to home; it's taken quite a toll on the family - the kids especially - to be away from home for so long. As much as the Seattle community has been an amazing family away from home, they also see how quickly Ava could improve just from being out of the hospital, and all the kids' desires to be home again. They desire to be home as well. So the decision on where Ava would get the "best care" isn't an easy one, as there are many factors involved, and not all of them are purely medical. With this transfer of care in mind, the Lees returned to Seattle in hopes of wrapping up their chapter there and packing up their stuff. With Ava's recent development and hospitalization, it's hard to know if/how/when they might be able to return home, but that is where their sights are, Lord willing.
The last couple days have been filled with concern around Ava's kidney function, as she has been retaining fluid and not able to completely void her bladder. Her creatinine levels kept increasing, indicating possible worsening renal function. The doctors were puzzled as to the cause of her abdominal pain & decreasing renal function. The concern was that the cause could be multi-faceted, so they wanted to proceed with caution, not jumping into any one remedy with the expectation that it would effectively address Ava's overall health issues as a whole. As Ava's creatinine went from 2.1 to 2.6 overnight on Saturday, to 3.4 on Sunday afternoon, the decision was made for Ava to have surgery. The surgery would allow the doctors to see if there were any blockages in her ureter(s) and place stents in her ureter(s) as needed. The surgery revealed blockages in both ureters near the bladder; a stent was successfully placed on the right side, but the left side was inaccessible so Ava will have another procedure tomorrow (Monday) to have a direct drain placed in the left kidney. They were also able to place a catheter to aid in urination.
Already, Ava is looking better and is being relieved of a decent amount of fluid. She was put on nasal cannula oxygen earlier today to help boost her oxygenation since it dropped to the low 90's. Thankfully, a chest x-ray didn't show anything of concern, so any difficulty breathing may have been due to the weight of the extra fluid. In the meantime, Ava is feeling rather uncomfortable with these drains in her as well as from the stent/catheter placements.
Hopefully, the right kidney drain placement tomorrow will adequately drain the rest of the fluid, and resolve her previous symptoms. It is still a mystery as to what caused all of this in the first place. In the meantime, Venetoclax has been held so as not to compound the situation in any way and to allow the medical team to more accurately determine what's going on. This means that Ava isn't getting any treatment right now to combat the cancer, which is always a little nerve-wrecking considering how aggressive her disease can be.
While the Lees were in Chicago, they had the opportunity to meet with the cancer team at the Children's Hospital of Wisconsin in Milwaukee to discuss Ava's treatment options and haploidentical BMT in particular. They ended up making the difficult decision to transfer Ava's care from Seattle to Milwaukee as soon as possible. The main reason is to be closer to home; it's taken quite a toll on the family - the kids especially - to be away from home for so long. As much as the Seattle community has been an amazing family away from home, they also see how quickly Ava could improve just from being out of the hospital, and all the kids' desires to be home again. They desire to be home as well. So the decision on where Ava would get the "best care" isn't an easy one, as there are many factors involved, and not all of them are purely medical. With this transfer of care in mind, the Lees returned to Seattle in hopes of wrapping up their chapter there and packing up their stuff. With Ava's recent development and hospitalization, it's hard to know if/how/when they might be able to return home, but that is where their sights are, Lord willing.
In the meantime, thank you for praying with the Lee family:
- for Ava's continued and full recovery; for insight as to the cause of her pain/renal issues so it can be addressed and resolved
- for Ava's cancer to be cured/eliminated, and no further growth despite not being on any chemo right now
- for Gwen and Jude, that they might be patient in this time of being away from their parents and being separated as a family
- for God to work it out so the Lee family can return home quickly
- for the Lee family to follow the Lord in whatever steps He may lead
- for God to be glorified and praised in all circumstances
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