Week 3 of intensified consolidation

These past few weeks have been good. Her pain has been very minimal and she has had no side effects to the chemo she has received thus far. Counts have started to drop and today she needed platelets. But her ANC has been good and that's awesome! She has been mostly like a normal little girl, minus all the medicine and clinic visits. Tomorrow is her last lumbar puncture until the next phase. Yay! No more being put to sleep! She is finally beginning to like the nurses. Now instead of walking with a frown she smiles and laughs with them. It's so good to hear. Even accessing her port is getting easier. Before she would cry when I put the numbing cream on and cry as soon as we walked into the clinic. Now she let's me put the cream on and doesn't fight me getting out of the car. This new reality sucks but at least it's getting a little easier for her. 6 more weeks til the next bone marrow aspiration and the next test to tell us if she is finally in remission.


"Let us hold unswervingly to the hope we profess, for he who promised is faithful." ~Hebrews 10:23

Vacation?

As of 2 Saturdays ago we have been home. They decided to hold chemo due to the infected sore on her bottom. And with that we decided to take a mini 4 day vacation that we already had planned and paid for. This break came at the best time. We could go on vacation with little worries since she wouldn't be on chemo and her counts should all be up. I was taught how to administer her antibiotics through her port for 7 days and then we had her de-accessed on our way out of town to California. The drive was eventful. Bella got sick and vomited all over on the way. This is the first time she has ever thrown up. We kept driving. I called the nurse and she said she wasn't too worried. Well neither was I. Yay 6 hours later we have arrived at our destination. La Costa Resort. After a day of swimming, golf massages and my husband messing up his back we sat down for some dinner. Bella is back to her normal self. Asking to use the bathroom a half a dozen times and only going for half of them. She decides to eat towards the end of dinner. My moms filet. All of the sudden we have a vomiting child. She is throwing up all over my mom and her plate. Good thing she was done eating. We pay and head back to the villa. I call the doctor who tells me to give her some zofran (anti-nausea medicine) which of course this is the 1 medicine I didn't bring. I didn't think we would need it. She is gonna call some in to the CVS but they are already closed for the night. If she continues to vomit she wants me to take her to the nearest ER. Throw up again she does. Twice more. I spoke to the doctor again and she said go and have the doc call me when we get there. Being my normal, unable to take directions, I said um I'll think about it. I was so close to taking her in. I even put cream on her port. But I began to think rationally. She's not on chemo and she doesn't have a fever. If she didn't have cancer, would I rush her to the emergency room? No! So I gave her some Dramamine and talked to Leo. We decided if she threw up again then we would take her. Guess what? She didn't throw up again the whole trip!!! She swam like a little fish, holding her breath underwater, using her ice-cream scoops and floating on her back. Her swim teacher would have been proud :) We went to the beach for the first time and played in the waves, even though at first she was so scared of them. But Gabbi loved them. She cracked up the whole time! We headed home Monday afternoon after some more swimming. This drive was uneventful. The next day we went to the clinic at 930 to check counts and her bottom to make sure we could begin chemo. All looked good so we headed over to POTC (pediatric outpatient treatment center) to receive 2 types of chemo. One of the chemos can be pretty harmful to the organs so she must get an hour of fluids before and 4 hours after. We had some visitors that made our very long stay better. Finally got to go home at 515. She is still on a ton of antibiotics and she also begun a oral chemo called 6mp. Taken once a day at bed time. We are keeping our fingers crossed that we don't have to make an unscheduled trip to the hospital anytime soon. Chemo continues every Tuesday's as long as she gets clearance on Mondays.

"And now these three remain: faith, hope and love…" ~1 Corinthians 13:13

Bella's Run

 

 

A fellow Texas Roadhouse employee has planned a run to help raise money for Bella. If you are interested in pledging per mile feel free to email me at BellasLoveHealsAll@gmail.com or karalynnsue@yahoo.com for the pledge sheet!

Not so good news

Initial bone marrow test showed Bella in remission and a few years ago yes she would have been but recently studies now show that if there is any MRD (minimal residual disease) above .01 then they must change the chemo regiment. Bella's MRD was .86. She has now been categorized into the high risk category. The chances of this happening is slim only a 2% chance. Which out of the 4000 cases diagnosed with A.L.L and 2500 of them being children, only around 50 kids do not go into remission after induction therapy. So now that she is not in remission, the amount of chemo she will get will increase. They will do another bone marrow test at the end of intensified consolidation to see if she is in remission. 8 weeks cannor come soon enough!  They believe the cause of the fevers are from the kidneys. Yeast has shown up in her urine and they believe that has turned into a UTI. Ultrasound today to confirm though she is already on an anti-fungal to help fight it off. Good news is her counts are up. ANC is 1200 and WBC is 2.4 and platelets are 121k. In order to start treatment ANC must be above 750 and platelets above 75k. She is feeling much better. Has been playing, walking and even going on the potty daily. Hopefully we can stay infection free for these 8 weeks and make it home in the near future. I know in my heart that God has plans for me, but I'm not ready. How can I be ready?


"But seek first his kingdom and his righteousness, and all these things will be given to you as well." ~Matthew 6:33