Layla's unknown expenses
Our Layla was diagnosed with T-Cell Acute Lymphoblastic Leukemia (T-ALL) on May 17th, 2017. While at the present we have her medical expenses taken care of her fight will take another 2.5 years of treatment. We cannot foresee what unexpected expenses we might encounter in the next few years so we are asking for donations to help with these cost. Those who know me, know it is hard for me to ask for help but I am doing so for Layla. I don't want to worry of any unforeseen cost to take away from the support that we can give her in her fight for the future. All donations will be used only for her expenses and any left over at the end of her treatment will be given to charity.
The biggest thing is that we moved from Savannah,GA to Anderson,IN. It was a hard decision for me but when a job was offered, added with the ability to have family close by to help with the kids and one of the best children's hospitals in the nation... It just made sense...
Since our move the kids seem happier to have family and cousins to play with. They love their new schools. And Layla has not had to stay another night in the hospital!!! She absolutely loves it at Riley and has made friends with one of their lab technicians named Avery.
And another positive note... Layla will be in the Maintenance phase after the 1st of the year! That means she will only have to go to the clinic once month for chemo and the rest of the time she will just be chilling and living a somewhat normal childhood! I'm so happy we've gotten to this point!!!
I promise I will post more soon... That you all for your love and support!!!
Tueday she was feeling a bit bad but not too much. We just hung out at home napping and hanging out while the others were at school. She said she felt a little sick to her stomach but not bad... she was still able to eat. Then towards the evening she started complaining about lower back pain.
Wednesday her nausea and lower back/hip pain increased. By the afternoon she told me to call the clinic. If you know Layla this is big because she knows that if she has to go to the clinic they would have to access her port and she hates getting accessed. So I called and they said we could either come in straight away or wait and come first thing in the morning. Layla said she wanted to wait until the morning. So thinking that it was possibly her pancreas again we were advised that she not having anything but clear liquids until she could get to the clinic and get checked out. She went to bed sipping on water.
Thursday we had a late start because her brother didnt want to go to school. So we got to the clinic after lunch. When we got there she had a temp of 100.3. They accessed her and took blood cultures. She was begging for pain meds because her back/hip pain was increasing. They started her on a bag of fluids and said that since she was asking for morphine that they would probably keep her in the hospital overnight. When her labs came back we learned that her kidneys weren't functioning properly and they admitted her into the hospital. In the hospital the continued her on fluids and did more labs. They also gave her some meds that stimulated her kidneys to make her pee more. Hoping to help flush her out some.
Friday they did an ultrasound and xray of her kidneys and well as more labs. They determined that she still had some of the chemo from Monday still in her system (which is bad because its ment to be gone within a day or two). They also believed that given her current state that she wasn't going to be able to flush it out on her own and it could be causing her more harm than good. So they make the decision to send her to the Children's Hospital of Georgia in Augusta for dialysis since Savannah doesn't have pediatric dialysis or even a pediatric specialist for the kidneys. So that afternood we took a 2 hrs ambulance ride up to Augusta. We got here a little after 5pm. They were quick to get her into the pediatric ICU and get her prepped for surgery to install a line in her neck for dialysis. A few hrs later the dialysis guy showed up for it was unsucessful because somehow a small clot had formed on the end of her arterial line. The resident Dr was able to clear the clot and we called it a night with no dialysis performed.
Saturday morning we were able to get her hooked up with dialysis and she did great. She slept through most of it and stayed asleep when they came in and performed a bone marrow biopsy. Afterwards she slept a few hrs more. She basically slept the day away but she needed the rest and the anastesia probably helped too...lol. She complained about nausea when she was awake but only threw up once maybe twice and not very much. But on a good note her bone marrow had come back clean so she is still in remission. They had worried that maybe her cancer might have been trying to make a come back.
Sunday morning her labs were showing signs that her kidneys were trying to make a comeback with is very very good. Her kidney function when she got here was on about 5% so there were some concerns that they might not recover. They have been testing her blood for the chemo drug and the dialysis was able to clean a bunch of it out and although some of her other numbers trended up from her post dialysis numbers it is believed that this rised was caused by some build up in her organs that was being release to be processed out. One of the side effects of the chemo staying in her system so long is that is was attacking her bone marrow and blood cells, so they gave her a blood transfusion to help her out. Her father, Laz, and Ana came to visit her around noon. I took the kids for a walk around the hospital and we did some laundry, got Layla a present in the gift shop, had some McDonald's and walked around a bit on every floor. Layla got some Daddy/Layla time while we were on our adventure. We came back and hung out together with Layla but then Layla started to feel worse and started throwing up so they felt it was time to go and let her rest. She continued to throw up off and on for the next few hrs and finally they gave her a stronger med for the nausea that seemed to help but made her a bit sleepy. The dialysis guy finally showed up around 9pm. But again her had developed a clot, this time in the other line. So the dialysis nurse waiting while the resident unclogged her again. Then we burned the midnight oil for another 3hrs of dialysis.
Which brings us to this morning. She has only thrown up this morning and has been sleeping the rest of the time. She has developed thrush since weve been here and they are trying to threat that. Her numbers came back as I have been typing this and it looks like she will only need one more round of dialysis and as the chemo will be out of her system. Her kidneys continue to improve. This evening they are going to start her on TNP for her nutrients since she hasn't been able to eat. We're hoping that will make her start feeling better when her body starts getting more of what it needs. We are still puzzled by what is causing her nausea, but they are going to start giving her the nausea meds on a schedule rather than as needed to hopefully prevent her from throwing up more. She is still on pain meds as needed which has been averaging about 2-3 times a day. So now she is sleeping and sometime this afternoon they will be doing dialysis. We are also going to try to get her out of the bed and moving around if she is up to it. But knowing her she probably won't be up for it until tomorrow once they get some of the TNP into her.
Thank you guys for all your help and prayers!!!
In the hospital they started giving her TNP (Total parenteral nutrition) through her port and within no time she was feeling so much better. She said it reminded her of lemonade and milk so she and a nurse decorated her bags. After a few days we got to go home with her continuing the TPN at home. I swear I'm slowly getting an amateur nursing degree...lol.
So fast forward a bit and this week after 5 weeks of ups and downs, she was finally allowed to start eating again. She is doing so much better and is enjoying eating real food again and not being tethered to a bag.
Her next appointment is Monday for more chemo and a spinal tap.
Also she was supposed to start back on her chemo yesterday. The surgeons suggested that she not get the chemo she was scheduled to receive because it would kill off her immune system and complicate things. So she will be getting chemo today but a mild one. They wanted her to continue to receive chemo so that the leukemia doesn't have a chance to rebound even just a little.
So fingers crossed, hopefully Layla will be home by the end of the week and can make her big brother Alex's 18th birthday party on Saturday!