Danjela's Brave Battle
Danjela had been complaining of a headache all day and had some vomiting throughout the day. Her headache would range from mild to very severe. Early in the afternoon, she seemed herself and they just assumed that she was experiencing a migraine. Around 6pm, it started back up again and she didn't eat dinner. A half hour later, she started screaming that her head hurt so bad. So they went into the ER. They took her vitals - which were good, no fever. But she was very lethargic & pale. They took blood and put her on an IV. She was still complaining of head pain. Her potassium came back low, so they gave her some in liquid form along with some Tylenol. Since the IV, she started to get some color back, but was still exhausted. She managed to rest some because the Tylenol helped alleviate the pain. They gave Danjela a CT scan and they discovered that she had a large mass on her brain.
Danjela was air lifted to children's hospital for an emergency surgery to relieve some of the pressure on her brain. They surgery went well and they decided to go in and attempt removal of the tumor. The surgeons were able to remove most of the tumor but there is still some remaining. At this point the family is unsure of what this means for Danjela and what treatments she may need in the future.
Daniela's father, Marc has proudly served and protected our country for many years and still does as a member of The National Guard Blackhawk Helicopter Unit. Her mother Jennifer, is a stay at home Mom who spends most of her days volunteering at Danjela and Nadija's school. She also spends countless hours supporting military spouses and sending care packages to military families. They both go above and beyond for others.
I am creating this page to help alleviate some of the financial burden for them. Marc and Jenn need to be able to focus on Danjela, her recovery and next steps.
We had a little bit of a scare at treatment this afternoon. Dani started running a very low fever.....just a teeny bit above normal, but for anyone going through chemo, any kind of fever is something to watch. They took her temperature 4 different times and it still was up. So we had to do some blood cultures to find out if she had an infection. The Team was pretty impressed that in almost 4.5 weeks, this is the first fever she's run. But, in the end, her ANC counts were at 1650 and showed no sign of infection, so we were able to move forward with chemo for today. Her weight was also UP today.....to 27 kilos!!
Today we got a brief rundown of her chemo-only phase which will start in September. Regardless of what the MRI results show (whether the mass has significantly shrunk or is completely gone), we will still proceed with the 6 cycles of chemo. This, again, is more of a "kill it with fire" mentality to get any rogue cells that still may be hanging around. We got a loose schedule of her treatment and what the drug regimen will be.
Today, we also celebrated Dani's last CSI treatment! She got to keep her mask and when she's done with this last phase of radiation, we're going to take both masks to the shooting range and literally light 'em both up! The ENTIRE Team - both radiation & oncology - are DYING to see video when that happens!
We're almost there!
On Monday (6/27) we got the MRI results and not only has Dani's tumor NOT grown.....but it's already showing shrinkage!!
Thank you to all our Prayer Warriors!! Praising the One who makes the impossible POSSIBLE!!!!
And just like that, the anxiety starts to kick in. Our nurse called this afternoon with the plan for our week.
She called to tell us that on Wednesday, Danjela will have surgery for her mediport placement. At that time, she will also have a spinal tap to see if any of those tumor cells are floating around. While the MRI back in the hospital showed no tumors, there is still a concern that some rogue cells are floating around.
Danjela is anxious & nervous & a little scared about the surgery, but she seemed very calm once I talked to her. We weren't expecting this to happen until next week. I did not tell her about the spinal tap. She will be sedated for the whole thing and they'll do everything at that time, so there's no separate procedure.
Prayer warriors -- please, please, please storm heaven with prayers that the spinal tap comes back clear. We didn't get the answer we wanted with the tumor, but I'm praying that God can give us a little relief and answer our prayers with a clean result. I just don't think my heart can take any more bad news.......
It's a devastating diagnosis, but I'm still trying to hold on to hope. I'm thankful that they were able to go in and remove most of the tumor, leaving only that one small section to treat. Her diagnosis and prognosis could have been much, much worse if the bulk of that tumor remained. I'm thankful that she recovered so quickly....showing how strong and how much of a fighter she is.
I still believe that God has big plans for my baby girl. I believe that He would not have saved her the night of her surgery, only to take her away now. I believe that He has given us the best team to fight this battle that we face. And I believe, in my heart, that she is going to beat this.
But, please, don't say I'm strong or that my faith is strong. My faith is feeble & weak and I'm not strong. I am a mother who could possibly lose her child and I'm angry.....I'm angry, I'm furious, I'm devastated and so much more. I feel beaten down and ask God....no, CRY out to God....WHY??? Why my baby girl?
We have a long, hard fight ahead of us. Please continue to keep my baby girl in your thoughts & prayers. Pray for her as she begins one of the hardest journeys of her life. Pray for us, as a family, that we are able to absorb this diagnosis more and to give Danjela the best support that we can. Pray that the treatments work and that this doesn't spread. Pray, pray, pray.......