Tuesday.....

...last night I had an upset stomach and  been up since 5 o'clock in the morning. My mind was speeding with thoughts at one hundred mph. Normally my home is pretty quiet the night before chemo, but not tonight. Dalen had forgot all about his appointment. And I kept it that way; I wanted him to continue smiling, having fun and playing with his little brother Collin.

Its Tuesday morning, I'm waking the boys up to get dressed and ready for our scheduled day. Dalen is wondering what's going on. He knows my work schedule to the T. I try to stay busy (or look busy) because I know Dalen is going to ask something. I just want to keep him smiling. But it doesn't last long. Dalen asks "Ma where are we going?". I wait for a couple of minutes before I reply, hoping he forgets. But he asked again..."you have a Doctor appointment". I keep looking busy trying to distract him. I gave him a hug here and kiss on his forehead there, swirled to the other side of the room blew a kiss and reminded him that I love him more. He chuckled a little and asked why..."Dalen you have chemo today". His smile was gone and he stormed to his room. All I could hear was him huffing and puffing. Those words I would have never thought I would had to say to Dalen again. I don't think I really accepted that my baby has to do chemo again. But right now I have to get in Mommy Mode!

On our way to the clinic, I kept reassuring Dalen that he will be just fine. I reminded him that he had no vomiting, and severe stomach pain after last week treatment. We saw the doctor; everything was fine. His blood was drown for labs; results was fine. Now it's time for chemo, but Dalen won't left his arm to connect to the port. Nurse Valerie is trying to lift up his shirt and Dalen pulls it down and cross his arms. I'm trying not to cry because my baby just doesn't want to do this again. I don't blame him! But it has to get done. After some encouragement and maybe some firmest he is connected.

It's 12:50 in the afternoon, we are heading home. I was so surprised of the short time we spent at the hospital and so was Dalen. We had seen the doctor, completed lab work, and received chemo in less than 3 hours. Normally it would take four to five hours. Dalen was feeling very nauseous but it wasn't that bad. He was moving through the hallway and walking on his own. Sometimes after chemo he was so weak, I had to support him. But not this time, it wasn't that bad. The doctors are confident that soon Dalen will not feel drained or nauseous after treatment.

I brought Dalen to work with me after treatment. I believe his environment influence the way he feels. I notice this during his first course of treatment. He was there for about four hours  playing basketball, telling some jokes, and resting here and there. He felt his stomach thingy ( I call it a thingy because it's hard to explain; it's a nauseous, numbness, tingling feeling) and a little tired but he was doing fine. 

Agin it wasn't that bad....we keep saying this because we know where we were. It was times we couldn't make it out the parking garage of the hospital because of the vomiting. Or the stomach pain was so unbearable that he couldn't do anything but curl up. He has been through so much. Dalen is such a strong Kid. 

We may have some bad moments and days, but we will get through this with God by our side. I believe our courage this time will come from where we've been and we're going.  

PS. Dalen received his Beads of Courage today. He will collect beads every time he has treatment, visits the clinic, MRI, labs. Etc...the beads are given to tell the story of Dalen's journey. Let's see how many beads he will collect. Thank you Child Specialist Lauren. www.beadsofcourage.org

Post-treatment....

It has been four days since Dalen's first treatment on Monday. He is doing well! I'm so surprised that he has had no pain anywhere nor has he vomit once, but his month has had a burning feeling. And The chemo still makes him drowsy and extremely tired.

Dalen went to work with me on Tuesday. He played with the children on the playground and played football. He rested for a couple minutes here and there, but no naps like before. However, afterwards on the way home he was sleep and when we got home he was sleep. He was so tired he didn't eat dinner until ten o'clock at night. 

I notice his appetite has been effected. He is eating only about twice a day and they're small plates. I will definitely have to start nuturian drinks again for him. Before, we went through almost five different brands. He would drink them for about three weeks and then I would have to switch to another brand; I think his taste buds was effected by the chemo.

Ever so often I break down and cry because it's so tough at times knowing your child has to endure such. As a mother you want to help and comfort your child, so you adjust your emotions and carry-on. But sometimes it gets to be to much and tears begin to flow. We have comfort in knowing we are in your thoughts and prayers. And that our Havenly Father will carry us through this journey once again. Continue to pray for Dalen and myself; we need it.

 

First chemo treatment....

Today Dalen received his first (second course) chometheraphy treatment for brain tumors. Dalen's brain tumor is called Optic Pathway Glioma. This tumor grows along the optic nerve that causes vision impairment. He has a tumor on the left side of the brain, a cluster of tumors in between his left eye and right eye, and a new tumor on the right side of his brain. 

This round of chemo treatments are prescribe to prevent growth of the tumors, shrink the size of the tumors and/or cause the tumors to disappear. When Dalen was finish with his first course six months ago; the left tumor disappeared and the clusters had shrunk drastically.

Dalen will be taking a chemotherapy treatment called vinablastin for twelve months. This chemo has minor side effects from the last two treatments, but may still cause joint pain, hair loss, nausea, fatigue, stomach pain, etc... However this treatment will only be administered fifteen to twenty minutes once week.

Dalen is suppose to be able to attend school as normal, however after today's treatment he felt nauseous and has been sleep majority of the day. I may have to keep him from school at least a day or two. I would hate for him to feel discomfort while at school. 

I'll keep everyone up to date on Dalen's progress throughout this journey. I know he is loved by so many who truly care him. He is a amazing kid and I'm so grateful to be his mother. I know some days will be harder than others but with all your love, support, and prayers this days gets a little be better. 

Please continue to pray for my baby Dalen.....

Thank you Base Camp (luncheon during chemo treatment) , APH Child Life Specialist Laruen, Nurse Scottie Pooh, Rosie, and Lauran, and Brittany's Wish ( Bella the Over-sized bear); because of you all Dalen's treatment today was full of smiles and hugs. 

Surgery....

Surgery went well for Dalen today. The doctors placed his powerport (chemotherapy port) into his chest. This port will allow chemo to flow through his veins. This port is also used to draw blood for lab work and insert contrast during MRI. 

The doctor was able to place this port in the same place as Dalen's last one. It's just slightly underneath his left nipple. Which is why Dalen calls it his Third Nipple. Dalen is always ready to make everyone laugh. While we were in the waiting room for surgery, when asked who I was Dalen would always say "this is my sister not my mother". The nurses would looked so shocked because the paperwork indicate mother. As they went to change it the relationship, I had to jump in because he is laughing so hard. He is my funny man!

Surgery went very well and Dalen is at home resting. Of course there is pain , however he's doing very well. Dalen is just so amazing to me. He spirit is so uplifting. 

Dalen will start chemotherapy treatments this Monday, just two days before Christmas. 

Please continue to pray for Dalen

Overwhelmed.....

My mind have been everywhere. I don't want to go through this again. All I can remember is how helpless I felt watching  my son suffer. Chemotherapy treatments bring so much pain, sleepless nights, and heartache. I can't take these feeling anymore. 

We received news that Dalen will not be prescribe chemotherapy in pill form. The pill is what Dalen wanted to take. When I was notified by the doctor this news, I couldn't tell Dalen. I knew why he wanted the pills rather than the port. It's been a great school year for him. He plead every morning to be at school as early as possible so he can play basketball on the school court and he begs to stay late as possible so he can play after school. Telling Dalen that he would have to get the powerport again was so heart-breaking. But I had to tell him! No time was ever perfect, this was so difficult. How would I start the conversation? How would I tell him without crying? I'm not going to tell him; that will work! I'll wait until he goes in for his appointment and let the doctor tell him. But I couldn't do that. I felt it was my responsibility to let him know. As I went to tell him that the chemotherapy in the pill form was still unavailable. His reaction was so sad. Tears begin to roll down his face and he stormed in his room. I started to say to my self, I should have not told him. As I was walking towards Dalen's room tears start falling nonstop, I could hear my baby sobbing heavily. he says "Mama I can't play basketball now. I can't try-out for the school team,now. I've been working so hard mama before and after school." 

I had no words for my baby. Basketball means so much to Dalen. Here I am again feeling helpless to the one person I love so much. To the one person I give the world to. The one person who I have always spent my last one. I couldn't help him! I couldn't tell him how I really felt. I just wanted to cry, cry, and cry.but I couldn't! I have to be strong for my baby. But I felt so powerless. How could I comfort him? I couldn't; This is just to much for me too. 

The only thing I could do was pray. I grabbed Dalens hand and got on my knees. We prayed together and we cried together. We asked for help together. We asked for comfort together. We asked for peace together. We asked for strength together. We asked for healing together. And we believe together.

After this prayer I just set there with Dalen. We didn't talk anymore; maybe because there was just no words to say. But what matter was we were together. I'm just going to continue to hope that it will get better. 

Please keep Dalen and the entire family in  your prayers; we need it like never before.

Wizard of Oz Musical....

I would like to say a hug thank you to Orlando Repertory Theatre, Angels for Kids, and the entire Wizard of Oz cast. Dalen enjoyed every single part of this production. He couldn't stop talking about his new friends, the staff, the play. Etc... but most of all he repeatedly expressed how he felt so comfortable and excited to final fit in! 

My eyes are full tears of joy knowing that my baby is happy....thank you! 

Happy Thanksgiving....

We were able to visit our wonderful family for Thanksgiving. Dalen had a ball!!! 

I'm so glad he had this opportunity to enjoy himself and family before treatment.....

Time.....

Time.....

It has been only six months since Dalen's last chemotherapy treatment and only two MRI appointments. The news we were never expecting came and the words we never wanted to hear were spoken. 

On November 18, we were told Dalen's optic pathway glioma returned and another glioma was growing on the right side of the nerve. We was not expecting this news at all because just the other day Dalen's eye physician was excited about Dalen's eye sight. He is now 20/30 in the right eye and 20/100 in the left. His peripheral view had improved. He is in the basketball tournament and won second place. He is excited about his upcoming rehearsals and performance in the Wizard of Oz musical at the Orlando Repertory Theater. And he just started ballet class at the Orlando Ballet. How could this news be true! My baby is keeping up with his homework, making tons of new friends and building friendship like never before. I can't keep him off the phone for 5 seconds without a chime coming through. Our life is normal! How can these tumors grow. How can they return? 

When the doctor told us the news my heart dropped again, like it was my first time hearing it. Tears begin to roll down my face and time just stopped. I turned to Dalen and he was facedown. Before I could say anything to him he raised his head and said "Ma it's going to be okay. God done it once He'll do it again". Immediately a smile came on my face. Joy begin to feel my heart. My son Faith is so strong! His faith encourages me! This kid is amazing! 

This journey is not over but we are stronger than ever before. I keep telling myself we can do this but I don't won't to do it again. I hate seeing my baby in pain and there's nothing I can do to help him. I hate that my son miss out on some much fun, activities, and homework because of his health issues. 

Chemotherapy treatments will begin again in one week. Dalen is dreading this whole process of accessing his powerport, the use of saline and the side effects. But he is so hopeful that he will be just fine. 

Please everyone please continue to pray for my baby. 

National Library for the blind and vision impairment....

For the last two years Dalen has been listening to all his books. His eye sight has prevented him from reading because book font size is to small for him to see. It has been a challenge to find books that have been requested by the school because they all do not come audio. When ever there is a book that I can not find in audio, he just don't do that lesson. However, after some research and help from his Vision teacher,  I found that the National Library for the blind and Vision Impairment offers million of audiobooks. I'm so glad he is now a registered member!! It has been really tough finding summer reading books and books for weekly reading journals for Dalen. 

This is a exciting time for me but also a sad time. Knowing that my son may never get his eyesight back breaks my heart. This journey is not over and is continuing to change our lives forever. 

Please continue to pray for my son....

Haven't posted in a while but here's some pics....

Hi, it's Dalen. What's your name?Lol!!!!!

 

Reading from a book...

Dalen is determined to read from a book for his reading journal for school. He has not been able to read regular print for over two years now. He has been listening to audio books for all journals and reports. However, he has decided to read straight from a book. He even asked his teacher for extended time to finish. He knows he doesn't have perfect vision, but I'm so proud that he is willing to try it. I'm so nervous about this but I don't want my feelings and worry to stop his potential. People think that since chemo treatments are down that life goes on as normal...but it don't! This journey is still here and front and center, forever changing our lives forever.

Continue to pray for my baby, Dalen.

Last chemo April 3, 2014

No words can express how happy I am for my Dalen....