Two-year-old Courageous Adalynn was diagnosed with Acute Lymphoblastic Leukemia in 2015. We received this incredible depiction of Adalynn’s journey with cancer from her mom, Melinda….
“You are in the wrong room!! My daughter just doesn’t feel well. It could be anything; an ear infection; dehydration; upper repertory infection but not that.. please God not that. This is what repeated in my head when the doctor in the ER told me and my sister that my sweet precious 18 month old baby girl could possibly have Leukemia. There is no way. We did everything right. We took her in when she is sick; get her medications; she is up to date on her shots and the flu shot. No! No way…. This is not happening!! Eddie is not even here! He left this morning to go to California to visit his mom and siblings for Thanksgiving. We just got to Wichita Falls this morning to be with family. There is no way my child has CANCER!!!
Oh but she did. She was diagnosed with Acute Lymphoblastic Leukemia Pre B Cell on 11/25/2015 at Cook Children’s after an hour and half ambulance ride from Wichita Falls. This is the most treatable and most curable of all the Leukemia’s. Her white cell count was through the roof. The highest they have seen… over 300,000!!! This made her high risk; which means a harder hitting treatment plan. My sister took my car and gathered our things to follow us to Cooks. Hadley, our then 4 year old, stayed behind with family (she had no idea what was going on). Even while being hooked up to all sorts of machines and iv’s Adalynn just layed on me and would tell the nurses “K” if they asked her anything. We did not know how sick she truly was. She was so pale but just a few days before was playing in my office at work. She looked slightly pale then but from what we had been told after taking her to Urgent Care a week prior is she probably has a virus… its cold season. No one would have thought to check blood then. She did not seem “that” sick.
They placed her in the pediatric ICU that night. We met the Oncologist who spoke of different procedures and what was to come. She made sure to let us know in the beginning “you and your husband did NOTHING to make this happen”! She wanted us to know that this is just something that can happen. They do not know why but there was no way to prevent this on our end. She also made it a point that we brought her in and we ARE doing what is best for her.
We were told that a procedure would be done. They were going to try Leukapheresis. This is where they take the “bad blood out and put the good blood back in”. At this time I gave her a kiss and hugged her till she fell asleep in my arms. I gave Eddie the update since he had not gotten a flight back yet and was still in California.
Suddenly right after midnight, Thanksgiving morning, time froze for 10 minutes….. A nurse opens the door and says they need Epinephrine. Not even 5 seconds after she shouts out the door for a crash cart. I look back in the room through the glass and see a nurse jump on the table and start doing compressions on my baby girl. Wait… no… what happened!!!! As I am screaming my sister comes running down the hall and grabs my face. During the procedure Adalynn coded. There were 5-8 people in the room with her taking turns doing compressions. My sister kept grabbing my face to make me look away. She was so lifeless…. I cannot believe this is happening. Someone save my baby! Please I cannot lose my baby!! Someone has to call EDDIE!!. The doctor was on the phone explaining to Eddie what was going on and walking him through while I watched… not sure which one of us had it worse. Then the Dr asks me to come in the room. I screamed no! I am not about to tell my baby goodbye!! You make her heart work!! Now looking back I don’t think they wanted me to say goodbye.. they just wanted my screaming and all out of the hallway and in the room. I sat in a chair right inside the doorway rocking back and forth begging for my baby to stay alive. Eddie was on the phone by now with me and I could not breathe or talk. We just cried. Blood bags after blood bags went into her little body. Finally compressions stopped and her heart was stable without the compressions. Thank you GOD. Thank you thank you thank you.
We were told that 90% of her white cells were Leukemia. She went from over 300,000 to around 17,000 in white cell count after her “episode”. Some say it was a blessing/curse that she coded as it helped kill thousands and thousands of the Leukemia Cells.
At this point my head was pounding and I watched the amazing PICU team get Adalynn all hooked up and the rest of the ivy’s into her. She was intubated and stable at this point. She had oxygen the whole time her heart stopped which made the doctors hopeful that she would be ok. I don’t even remember laying down…. Later on that morning I was told that the doctor was in there finishing up getting Adalynn situated and God help my child but she sat up and tried to get out of the BED!!!! The doctor was just like wait where are you going!! They then placed her on paralytics.
For the next few days she underwent surgery to put her mediport in and to put a pig tail in to drain the blood from her lung. She was on many different IVY antibiotics and had to be placed in cooling wraps to keep her temp down so she would not seizure or shiver. Even though she was out of it she was feisty and not doing what she was told. She had to be changed to 3 different ventilators! Stubborn girl but that made it clear she was going to get through this. Eddie got there later Thanksgiving day.
Hadley was so strong also through all this. We had child life talk to her a few days after everything happened and she cried but wanted to see her sister. When we got to the glass she said “no I want to go in”. She went in the PICU room and got on the step stool and grabbed her sisters hand. Another amazing moment of my life to see their bond!!
When they took her down for the MRI about a week later they had lifted some of the pain meds and paralytics and when they asked her if she wanted to go back and see mommy she nodded yes. The MRI came back normal. Her heart was normal. God thank you so much…. You saved her!
We were in PICU for a week and half and then on the Oncology floor for over a month. We spent Thanksgiving, Christmas and New Years in the hospital. She had to learn to walk again and use her voice. She had infections in her lungs and was on oxygen for almost the whole time we were in. We were finally released in the beginning of January..only to be home for 2 days and then Adalynn gave us another scare and aspirated at home and we ended up back in the PICU overnight and another week in the hospital. They found two spots in her lungs and biopsied them but thank goodness they were fine. She had to be on thickners for liquids in the beginning as she did not pass her swallow study. She had a feeding tube also. She is now gaining weight back from this past fever stay at the hospital so we are praying we do not have to get the tube back. She has passed her second swallow study and is drinking like crazy!!
She has been in twice for Neutropenic Fever (this is when your ANC is so low that you basically have no immune system and something as simple as the cold can cause your body to get very very sick when you have cancer)
We have been through all phases of Chemo at this time; Induction and Consolidation. We are now in Intermantience. During this face she gets overnight chemo for 24 hours impatient and then two days of staff watching her closely. Then after a week and half if her numbers are good we do it all over again. 4 times to be exact. She also gets chemo by mouth at home every night before bed. Even though she has had two fever stays at the hospital she is handling all of this like a CHAMP! Then came delayed intensification. This was really hard for her. Thank the Lord no hospital stays but she did have low counts all the way through and we were isolated to the house for weeks. Her hair that had started to grow fell back out. So much chemo in and out of her sweet angelic little body.
She started maintience in August/September and is still in mainteince phase today. This is the last phase and it is 4 months of day to day chemo and once a month clinic visits and then it re-cycles and we do the 4 months again. She gets a lumbar puncture and chemo is injected after they take some spinal fluid for testing. This happens 1 time a month in clinic and then she gets a month break and then it cycles again. The chemo that she gets every night (6mp) is very potent to her body and so the dosage is half of what it should be. She has the genetic gene that does not like this chemo and it holds onto it longer in her body. Her sweet face is fattening back up and she her hair is so brown and curly! She will be done with chemo March of 2018! Then we will be on a 10 year plan of clinic visits and blood and count checks that will lessen as the years go by and she remains cancer free!! She is a fighter for sure and helping us all stay strong!!”
WE NEGU FOR YOU ADALYNN!!
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