My Journey
Losing Our Josiah A Journal in a Mother's Darkest Season
About Me
- Name: Maria
- Location: Alabaster, Alabama, United States
I am from San Juan, Puerto Rico. I speak fluent Spanish and English.
Thursday, June 30, 2005
Tuesday, June 28, 2005
Sunday, June 26, 2005
Angry
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Alone
I can't help but feel like I am going through this journey alone. Sometimes I feel like people do not understand the seriousness of this disease. There is no human cure for this cancer. If this cancer continues to progress my little boy will go home much earlier than I would of ever expected. If this is the case, if this is what God will allow, I will miss him. There will always be a huge hole in my heart until the day when I am reunited with him. I ask God to help me live through this. Sometimes I feel so overwhelmed that my body gets weak and I feel such a tightness in my chest. I don't write this to make anyone feel bad. I do know of the people that have been so helpful. It's just the loneliness of being in this situation when our family is the one who faces this every minute of everyday. I do thank all who have helped and who continue to help. I am forever grateful. It even helps to know that people are reading my blog.
Well, as I think about other families going through difficult times, I think about the New Jersey Families that lost their children in a tragic accident. I do not know if they know Jesus, but I sure do pray this path leads them to hope in Christ. If not this family will be consumed by this awful tragedy. I now know that living this life without Christ will only lead us to despair with no way out. We may not have a say so in things we cannot control, but I do know that God will bring justice to those things that try very hard to destroy us. I believe that God will pour His wrath on satan and bring justice to His children. I hold on to this verse "God is close to the broken hearted" I look foward to the day that cancer will get what it deserves.
Thursday, June 23, 2005
The Cross
Wednesday, June 22, 2005
The Six Weeks
Typical Week - Mon -Fri Radiation/Anesthia & Sun - Sun Chemo
Radiation - The sun has not risen yet. I still see the big dipper in the moonlight sky. It is 5:00 AM and I have to give Josiah his anti nausea medicine called, Zofran. As I walk in his room, I see how peacefully he sleeps. I stare at his little face and grieve. I feel so sad that he has to walk down a path that I would have never ever chosen for him to walk through. At times I feel so much pain that I start to hyperventalate. After I gather myself, I proceed to wake him. I say "Hey buddy, good morning, it's time to go get your sleepy medicine (which is the anesthia), so take your Zofran (this medicine prevents him from vomiting due to the radiation). Josiah wakes up and he takes his pill without any hesitation. Once he finishes he gets out of bed and tells me "Mom I am ready for my sleepy medicine." So, he walks to the living room and waits patiently for Dan and I to get ready.
We leave the house at 6:15 AM so we can be at Bayfront Hospital for his radiation by 7:00 AM. Radiation goes like this: It is waves that destroy or "burn" cancer cells as well as healthy cells. Because Josiah has to lay perfectly still at all times, the doctor puts him under anesthia every time he gets radiation. Once he lays on the "bed" thing, his little face is covered with a hole covered mask that marks where the radiation is to go. The procedure only takes about 5 minutes, but because of the anesthia there is a pre and post process. Dan and I go to the waiting area and we just talk or sit quietly. When the procedure is finished, Josiah is taken out of the room and back to his normal hospital bed. There the nurse and the sleepy medicine doctor wait for him to wake up. When Josiah comes out of the anesthia he gets out of it very mad. So, they staff always makes sure Dan and I are in the room before Josiah wakes up.
Steroids - Well the steroids made Josiah gain 21 pounds which is a huge deal for a little kid. He went from 39 lbs to 60 lbs. His little face was perfectly round and his stomach was big. Even though these steroids have such awful side effects, it is a blessing in disguise. This medicine prevents his brain from swelling. You see, the tumor puts pressure on the surrounding areas and the brain has no room to swell at all. Anyway because of the weight gain Josiah could not move around much. I had to treat him almost like a baby. Giving him a bath I would lay a towel in the bath tub and gently lay him on it. I would have to sponge bath him because his port could not get wet (port is a device they put in his heart so they can give him any IV meds, transfusions, or just be able to take blood. It has two tubes that go in the arteries and the tubes are connected to a ball like device that is just under the skin. That is where the nurses insert the needles, which are connected to an outside tube, where the meds go through, to get into his body.) This port was high maintnance, you could not get that area wet, period! Not only was the weight a hard issue but his mood swings were terrible. He would be so angry and he would scream and scream with anger. I had to tell myself "it's just the meds". To be honest those fits really got the best of me. I would just cry and cry.
Okay, I can't finish this, but I will go ahead and post it anyway. It hurts remembering all this.
Sunday, June 19, 2005
A Good Night Prayer
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Thursday, June 16, 2005
The Next Day
When I got to Josiah's room Dan and Josiah were just waking up. Dan told me nurses were in and out checking Josiah and giving him his meds. His meds consisted of the following:
Decadron (steroid) - to prevent swelling of the brain
Zantac - to protect his tummy from the steroids that could irritate his stomach lining
IV fluids - to keep him well hydrated
Now, the steroids alter your moods and make the person extremely moody. So, Josiah had moments where he was, what I call, Mr. Hulk. He would scream and get so mad at everyone. Those definitely were moments that came amd went. I recall one moment where he got upset at something and he screamed for what seemed forever. I carried him down the hall to get him out of his room, but nothing seemed to help, so I just continued to hold him and love him through it.
Well, when it came time to meet with the doctors, Dan and I had Wayne(Dan's dad), Pastor Steve, my mom, and my friend Heather in the conference room. We all got seated and the doctors were all together in front of us. Dr. Tuitt spoke most of the time. He started to tell us that Josiah's situation is nonoperable. Due to the tumor being inside his brainstem performing surgery would end his life. You see the brainstem is in charge of keeping our hearts beating, our lungs functioning, and it controls the nerves in our faces. When I heard this, I could not believe what I was hearing. He gave us statistics: 30% chance to live the first year and a 5% chance of living the second year. This tumor tends to grow regardless of treatment. In that moment, Dan did a brave thing in my eyes. He told the doctors that we will hold on to the 5% and regardless of what you are telling us we are people of faith. We will believe God for Josiah's healing. As for me, I was unable to speak. My whole body was weak.
From that meeting, I decided to ignore my emotions and go into adrelanine mode. I said to myself, "God give me the supernatural strength to be all I can be for Josiah and Benaiah." I was fervent in that I was not going to allow this report to rob my sons of their mom. My frame of thinking changed into just tell me what I need to do and I'll do it. I will deal with my sadness another time because the road ahead was going to be very difficult. Josiah's immediate treatment was this: 6 weeks of chemo that came in capsules and 30 sessions of radiation Monday through Friday. He also had his other meds the steroids, zantac, and fluvocane. Those six weeks was tough for all of us. I will post about that another time.
Wednesday, June 15, 2005
The Best Good Night Hug
Tuesday, June 14, 2005
Finding Out
Monday - We flew to Puerto Rico and Josiah was fine. At that point I did not notice anything different, other than him being a little tired due to waking up so early. We landed and met my parents there and went straight to my grandmother's house. We had a great Puerto Rican dinner. From there we went to our hotel and Josiah was still acting fine.
Tuesday - We went to my grandma again and spent most of the day there. One event that sticks out to me is when Dan went to run an errand Josiah got so upset that he left. I mean Josiah was out of control mad. I knew he pitched fits like a normal 4 year old, but this was like the incredible hulk of all fits. Well after calming him down and soothing him he remained real quiet. I thought it was because he must of been tired from his fit. My grandmother watched him closely and paid close attention to Josiah's facial expression. She felt in her spirit that something was wrong neurologically. It was something in the way he was staring. I did not know this at that time because she did not tell me until my mom mentioned it to me at the airport when we were to fly home. So I continued to think that he was okay and that he was just tired.
Wednesday - We went to El Morro, which is a huge Spanish fort. It is absolutely gorgeous there. It requires a lot of walking going from place to place and plus it's hot. Josiah was acting a little different. This time I noticed. He was asking me to carry him and that he was to tired to walk. He seemed like he had a virus or something. After El Morro we went to my parent's resort and Josiah was feeling a little better.
Thursday - We spent the day at my parent's resort. Josiah enjoyed the pool and hanging out with his grandpa. It really was a good day. Later that night Dan and I went out to eat and my parents watched the boys for us. Everything was fine.
Friday - We had to drive down south to Ponce where the youth convention was held. It was a grueling drive. We had go through the jungle and over small mountains. Josiah slept the entire time. Ben on the other hand got car sick and threw up oreo cookies. It was so messy and smelly! Anyway Josiah continued to sleep. When we arrived we checked in to our resort and we got settled. Josiah was fine he seemed to be having a good time. When it came time to sleep he and Benaiah did great.
Saturday - This was going home day. We had to pack up and leave to San Juan which would be a 3 hour drive. Josiah and Ben did fine. I did not recall anything unusual. Once we got to the airport my parents met us there and we unloaded all of our stuff. My mom then told me what my grandmother said on Tuesday. I kind of looked at my mom like what are you crazy? There is nothing wrong with his brain, I thought it was just a virus or something. I told my mom that I had already planned to take him to his doctor the next morning. So after we said our goodbyes Benaiah and I headed for our gate and Dan took Josiah with him to return the rental car. When Josiah and Dan got to the gate he was carrying Josiah. He did not want to walk and he seemed a little week. Once we got on the plane and seated, Josiah said he was going to throw up and he did. I definitely thought yeah he has some kind of stomach virus. Once we landed at Orlando Airport and we had already gotten our bags, Josiah threw up again. I was glad we were outdside and yet that is when I felt like something more was going on. I thought to myself "Could my grandma be right?"
On the road, Josiah slept and we arrived home at 10:30 PM. When we came inside our house Josiah went straight to bed along with Benaiah. Before Dan and I went to bed, I checked on Josiah and it seemed like he was sleeping fine. Midnight rooled around and I hear this thump. I go to see and it was Josiah who fell in the bath tub trying to throw up in the toilet. When I saw him I picked him up and he still needed to throw up. When he did it was a clear yellow liquid. He was so weak and couldn't walk. He wanted to go back to sleep so I allowed him to do so. I heard in my spirit that Josiah was being attacked. I went to bed praying in the spirit.
Sunday - I woke up at 6:00 AM and immediatley called the doctor and made an appointment for 7:45 AM. Dan woke up a little later and started to get ready for church. I called one of the MC girls to come and watch Ben while I took Josiah to the doctor. I remember telling Dan not to be surprised if Dr. Kelly tells us we need to take Josiah to the hospital. With that in mind I got a bag ready just incase. When we got to the doctors' we saw Dr. Kelly and I told her the symptoms and she told me it was either two things: 1) He could have fluid build up behind his ears causing the dizziness and vomiting or 2) He is showing signs of a stroke.
When I heard that I was shocked and numb. From that point on I felt like I was in the twilight zone. I called Dan and told him the news. He was speechless. I drove by the church picked him up and headed to the hospital. On the way there Josiah was horribly weak and I kept asking him how many fingers do I have up Josiah and he would answer me correctly. that brought some comfort to me. Once we got there they immediately took him in for a cat scan. Then they had to put an IV in and it took them 5 times to get one in. We spent an hour or two in the room with Josiah. He was calm and watching TV. Then Dr. Kausey came in the room and he said "We looked over Josiah's scans and..........we found something." When I heard that I felt like I was having an outer body experience. I felt like this is not happening it is a dream a nightmare.
I started to call my family. I was frozen in shock and despair. My mom fell on her knees in complete and utter shock and disbelief. I heard her cry out. I called my brother and I said "Nick they found something" and hearing that he tried to comfort me. I couldn't cry for some reason. I felt like I did not have time to cry or go in a rage. I had to be there for my son I will deal with my reaction later. So they admitted Josiah and we stayed.
Monday - Josiah had been on medication all night. Nurses were in and out checking him. They started him on steroids to prevent swelling in his brain. When the sun came up he seemed to be better. This day was the day we were to find out exactly what Josiah has. We preped him for an MRI. They had to put him under anesthetia. Once that was over with we got back to our room. My mom and I were there and Dr. Barbosa (the cancer doctor) came in without any warning and pretty much told me the worst news of my life. I was bitter on how unprofessional he was in telling me because Dan was not in the room. He told me that this is a brain tumor called Brain Stem Glioma or pontine glioma. He said it is the size of an egg and that Josiah has eighteen months to live. I collasped into my mother's arms. I felt my body go weak and numb. I could not walk. I started hyperventalating and I managed to get up from my mother's arms. I walked out of the room and I faced the doctor and told him I wanted to see it for myself. He showed me the MRI scans and there it was, the tumor. It truly was the size of an egg. I kept asking him if he was sure and if there was anything they could do. He just looked at me and told me no. Now bythis point, Dan was coming back and I saw him coming up the hall. I looked at him and he could see it on my face that there was something terribly wrong. When he found out Dan went into this shocked non reactive mode. He was stunned. After that some other doctors came in the room to look at him. They were nuero surgeons. One doctor Dr. Tuitt said we were to meet tomorrow to talk further detail.
Well I will end it hear. I will post another time.