The cure for our baby girl is a bone marrow transplant and Praise the Lord her matched donor is her big sister Emmarie who is 2 years old. Our Emmy will have a surgical procedure done to remove liquid marrow then her healthy blood will be placed into her baby sister Adeleens blood stream. We are praying and believing that our baby girl will accept her big sisters blood and our princess will be healed of JMML.
Let me just go back in time a little and give a brief story of when it all started. When our daughter was born she was a healthy baby girl. As time when on when she would get sick I began to notice it would take a little longer for her to get better than my other children did. But all I thought than was every child is different. Once she did get better she was back to her joyful self. But then the fevers would come again along with cough. I thought these were symptoms of the common cold. So I would take her to the Dr and it was said it was a virus and it would just go away on its own. After a while I noticed tiny little red spots on her cheeks near her eyes. I thought they came from the forceful cough she had developed and they were tiny blood spots under her skin. After several doctor visits and plenty of visits to the ER Adeleen had a routine check up for a physical on February 16th of this year. The medical assistant did the tiny poke on her finger to check her hemoglobin. When she collected the blood and placed it into the machine it read very low, but she said sometimes it can misread it so she redid a hemoglobin test but again the results were very low.
Her doctor then requested a STAT blood test at the lab. I took my daughter to go get her labs done, then her dr wanted us to come back for the results. So we waited around for a while and the MA called us into the room told us to wait for her Dr. As we waited, my grandma was their with my daughter and I. At one moment the Dr came in and I thought the results were ready but she said they werent back yet. But after a few more minutes the doctor came back in.
I didn't expect the next thing she was about to say... she told me I needed to sit down, Ive always known those aren't words anyone wants to hear. From that moment I knew it wasn't good. I could't sit. Adeleens Dr then told me that the results didnt look good and that she was very sick and it looked like it could possibly be cancer. Cancer! I never imagined to hear those words. Her Dr told me she had to be transfered to Standford where she would get more tests.
My husband followed Adeleen and I behind the ambulance. We arrived to Lucile Packard Childrens hospital very late that night.
The next morning Adeleen had a bone marrow biopsy. That test had read that she did have cancer! We just could believe that but they didnt know which kind. They were able to rule out AML and A.L.L forms of leukemia. So they sent a different test for JMML which was sent to USCF where they specialize in this type of cancer.
We waited what seemed like forever for these results . Finally after about 1 month of waiting the results were in and they did find a certain type of mutation called KRAS mutation in her blood and our daughter did have JMML. Something we never imagined or knew existed.
The plan was for my daughter to have chemo and transplant done at Lucile packard but her Dr at the time wanted us to go to UCSF to see a specialist who specializes in JMML as a second opinion. We met with the Dr and he went over his plan for Adeleens condition after my husband and I went over her health history.
My husband and I were really happy we had gone to UCSF and liked the approach the Dr had explained to bringing the cancer to 0% then doing the transplant.
After my husband and I had spoken we decided UCSF childrens hospital was the hospital for our babygirl. Once we decided it didn't take to long for Addy to be admitted because throughout the 2 weeks we were to be home she was getting very sick and going back and forth to the ER and back to Lucile Packard because she still wasn't going to USCF right at that moment. Her platelets would be really low and she would end up right back at the hospital so her dr at standford decided it be best to go to UCSF and start chemo as soon as possible. So thats what happened my husband drove us to San Francisco for Addy to be admitted and start chemo the following day.
So far Adeleen has gone through one course of chemotherapy which she responded very well to but in the midst of this her spleen was greatly affected by JMML . It was very enlarged and it seemed the more platelet and blood transfusions she received her spleen would gobble them right up and she was back to very low counts. After several transfusions Doctors decided the spleen had to come out as soon as possible for fear of bleeding in Addys brain because of all the bruising and red spots on her body called (petichiae) which I had talked about that those were one of the first symptoms I noticed early on.
Once the doctors and surgeons knew her spleen needed to be removed they moved quickly they wasted no time! The following day we took our daughter down to the operating floor to get ready for her surgery. But there were major concerns and risks because of her platelets being so low there was a risk of her bleeding out but if her spleen was not removed she could have a hemorrhage in her brain. It seemed we were stuck and felt no way out. But we knew who was going to get her through it we knew Jesus would take complete control. We covered our baby girl in prayer and then about 2 hours later the surgeon called and said Adeleen did amazing, there was hardly any bleeding! We knew that was Jesus!
As soon as her spleen came out her platlelets came up drastically and stayed up. The splenectomy was a success. After this and after she recovered from that and chemo prior to the splenectomy we were than allowed to go home for 2 weeks which were the best 2 weeks because we were able to spend time with her 3 siblings (my babies) and husband together as a family.
Once its time to go back to the hospital I stay with my daughter throughout the whole time she is in the hospital while my husband Benny goes back home to be with our children and get back to his job. He comes back every weekend which we look forward to, but the distance and separation from my husband and children is very hard.
On Monday May 22nd we returned back from our 2 weeks at home for the second round of chemo. But that didnt happen because Adeleens liver enzymes had gone up to high. We had to wait for those to go down to start chemo because that may have meant that she had some sort of virus going on. But In the midst of all this I was rushed to the ER for a stroke but Praise God it wasnt one I had severe migraines that affected a nerve in my brain to make my right side go numb so that time away from my daughter while she was in the hospital was so hard. That same day my husband rushed over from home 3 hours away to be with my daughter and I. He picked me up from the hospital about 20 min away from our daugher. My daughter was discharged from the hospital the next day on Wednesday to a place hear called family house just down the street from the hospital. We had a wonderful time together without my daughter being hooked up to any IV's and being able to get a real goodnight rest and have breakfast together and just be together. After a great night and late breakfast my husband and I noticed our daughter had started to feel warmer than usual so I then took her temperature and it was pretty high. After I called the emergency number for her and the doctors called me back after leaving the message we were told to bring her in ASAP! Once we arrived to the ER everything got worse she started to get very sick. Adeleen was admitted again and after a couple hours in her room her blood pressure started to drop and so did her oxygen level. After several attempts to bring up her blood pressure the nurses call the rapid response team they got to the room quickly and after assessing Adeleen they quickly brought her down to the PICU. Our baby girl had gone into septic shock! She was so sick and the doctors and nurses started putting in IV lines and all sorts of medications. We were then told she needed to be on a ventilator to do the breathing for her and medications to support her and heart lungs and brain so she didn't have to use that energy to do the work. They didn't want her to use any of her energy to do any work because it was crucial to her health. Everything that night was scary my husband and I just had no words as we walked around and waited, we just couldnt sit still.
After waiting because we couldn't be in the room, her doctor who came at around 2 am to see her brought us back into the room and she was stable, Praise God! The severity of this was that we almost lost our little girl which was unbelievable and hard to hear, but Praise God for His power!
As Im writing this Im sitting here in the PICU still with my daughter on the ventilator waiting for her to be taken off of it slowly and able to breathe on her own praying maybe that will happen tomorrow Lord willing. These few days here have been so scary. Just a while ago she started to dstat and everyone rushed to her room. I felt my heart just sink and I felt helpless and all I did was pray and called my husband sobbing as he prayed for our daughter. I praise God because her stats started to come up and now she is stable sleeping in her crib and Im just so grateful to God, and grateful for blessing us with a great team of doctors and nurses.
Im sorry for how long this is but I really wanted you to know exactly whats going on with our princess. We are believing by faith that she will be healed and one day we will look back at all this with Adeleen completely healed. Trusting God for a miracle.
Thank you for taking the time to read this and for your prayers help and support as we go through this.
There are times when we aren't in the hospital but we need to stay near by that it gets tough financially, and also the commuting for my husband.
Whatever it is God puts in your heart to give is a blessing to us and we pray you will be blessed. Thank you so very much.
With Love, Addy and family.
This is our baby girl now in the PICU
I miss holding her but we cant because of the breathing tube she has right now.
Always smiling and joyful.
Addy and her big sister Emmy to the left. Our precious girls.
- Melissa Deniz
- Daisy Denis
- Gloria Vasquez
- Dulce Ibarra
- Khayla Alvarado
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