05/19/2026
I have truly been enjoying normalcy this 2026 year. Only going to cooks once a month has been amazing! Here’s an update to today’s situation.
In April we showed a decrease in her numbers, but it was very slight and they had increased her Mercaptopurine (chem0) so a slight dip was expected. They lowered the dose again and expected her to equal out again. Because of her continued sensitivity, Methotrexate has stayed low dose.
In May we had an eventful visit. (May 1) She had fallen a few days before and hurt her wrist. She showed full range of motion and wasn’t babying it, so I chalked it up to a light sprain and just iced it. On Friday, (May 15) it was still sore, so they sent us for x-rays and those showed two fractures in her wrist. 🫣 I got a very serious “told you so” from LuLu and she is in a brace until the end of the month. Her numbers had also started going down and were concerning. So, They made a follow up appointment for last Friday.
Last Friday, we came in and her numbers had lowered even more and more concerning was her Hemoglobin being at 6.5. We went home with a watch and see attitude and an appointment for today.
Today we got the bad news. Her hemoglobin is at 6.9, still below 7, so she needs a blood transfusion. AND all of her numbers have dropped drastically. Her energy is at normal levels, but if you know LuLu and Ellie, then you know they are their own bright sunshine and not much keeps them down so you can’t necessarily go by her energy levels. LuLu is having viral tests to see if she’s fighting something but there haven’t been any symptoms of anything.
All of this is VERY reminiscent of last summer and her doctor and I are both concerned about a repeat. At that time, her numbers had tanked very quickly and all of her viral test results came back negative. It ended up being due to her chem0 which ended the phase we were on early.
Every single number we monitor on her is significantly below where we want it including her ANC so she’s very immunocompromised right now.
So here’s the kicker and where yall come in with prayers. On Saturday, we are supposed to leave to Florida to be a part of a cancer family retreat called Lighthouse Retreat. It’s about a week long and the girls have been looking forward to it. We have hit snag after snag (mostly financial) in the past few weeks with regards to going and so many amazing people in our community have helped to get us ready to go on this trip both financially and spiritually. As it sits now, we won’t know if we are medically released to go until Friday which is cutting it very close.
If yall could pray for the outcome to be God’s will in play. If we go, I don’t want to be stuck in an unknown hospital with a sick kiddo so I want to make sure she’s healthy. The Lighthouse Retreat said that it’s possible to reschedule, so that always an option too. There are just a lot of things in play and the health and well being of the girls will always be the priority with me. Clarity on these things and discernment all around would be great!
IF we don’t go to Florida, I think we will do a mini trip to Houston & Galveston once we feel secure in LuLus health. We have family there that I know the girls will be happy to see, so they’ll be happy about that if plans change.
Lulus numbers now vs march:
White Blood Cells
1.09 were around 2.5
Red blood cells
1.74 were around 3
Hemoglobin
6.9 should around 11
Platelets
60 were over 200 in march
Anc : immunity
185 was 1500 in march
