Monday, May 25, 2015

Logans Story Part 4

Its officially been 4 yrs since Logan had his brain surgery. He had a MRI of his brain in March 2015 and it came back great,no sign of a tumor. The Urologist said Logan has to make it 5 years without the brain tumor coming back. If he makes it to 5 yr mark ,then the chances of the brain tumor coming back are that of a child that has never had a brain tumor before,so chances of it coming back after 5 year mark is VERY unlikely.



I am very happy to hear this,I am just so proud of Logan. He truely is a strong-willed child,he handled all of this so far very well. The Urologist said Logan will have another brain scan in September 2015,then if that one comes back clear, he will have only 1 brain scan yearly for 2 years,and then brain scans will be done with.

I will be adding another part to this story with information on the specific Chemotherapy drugs Logan was given throughout his 1 1/2 years of treatments and all the info on side effects,what the drugs did etc. That way he will have all this information.

Logans Story Part 3

Daddy,Logan,Landon waiting to get an MRI of Logans brain.

Logan had to get MRIs of his Brain throughout his Chemotherapy treatments as well,so the Urologist could monitor his brain to make sure there was no new growth. Logan had to be sedated,and sometimes a breathing tube would be used to help him breath while he was sedated. Each MRI lasts about 1hr,and it takes about 30-40 min for Logan to wake up from the sedation. He usually sleeps right after,on the way home in his carseat,and by the time we arrive home the sedation effects have worn off.

At first Logan was having brain scans every 3 months for the first year,then every 6 months for the 2nd yr, and then after the second years up he will have 1 brain scan a year for a few years. This is just to monitor to see if the brain tumor has come back. Logan is usually scared of the MRI, he has just recently at age 6 become comfortable with getting one.

After Landon was born there was so much to be thankful for, Logan had a new brother,we have another baby. We clinged to the joy of having 2 children and it really brought in a positive note to Logan finishing up his last 4 months of Chemotherapy. Logan loved having his baby brother by his side.








 Being pregnant while going through Logans Chemotherapy treatments was very hard, but also rewarding. We were expecting another baby,that is a very exciting time. So it gave life more meaning,when the baby was born (Landon) Logan would only have 4 months more of Chemotherapy. I am a very joyous and happy person. I try to look at the positive in every situation and every person. Yes,Logan going through Chemotherapy was the hardest thing pysically and emotionally I have ever had to go through,but I was determined to make the best of the situation we were in. Even tho I was hurting so bad inside,I wanted to be strong and look strong for my son.

I didnt want anyone to feel sorry for me,because my son had cancer. I look at it in sense that yes,my son had cancer,but hes doing good,and hes making it through. I heard people tell me all the time how their child died from their cancer,their child has terminal cancer. I saw so many kids at the hospital that were suffering so much more than my son was,they had it so much worse. I feel you need to be thankful for every moment,breath,second,because trust me it could be way worse. I looked up to my husband,we supported eachother,and helped eachother through.

I didnt really tell any of my friends or family what exactly was going on at the time,or how I was feeling. I pretty much kept my feelings and everything to myself.But I told them just bits and pieces,like the basics of how the treatments were going. Alot of it was because Logans brain cancer and tumor was too difficult for me to talk about at the time, and I wasnt ready to talk about it,I was to weak. I figured they would understand. Its just such hard topic. I chose to talk about only the positive aspects of it. I should have asked though for some support,Im sure I would have received some support.

 But I woke up each day and put a smile on my face,because I was determined to be positive about what Logan was going through. I was going to be supportive and happy for him. I wasnt going to let it swollow me whole. With every negative that came about id make it positive. Theres a positive to every negative.

I did go to the doctor and was put on a depression medication,but it made me feel not myself, it kinda made me feel depressed, and I did doubt things ,but really tried hard to look on the bright side. I ended up getting off the medication and I felt better. But here we are 4 yrs later. I can comfortably talk about Logans tumor and his cancer because Im stronger. Im thankful. Every single time I look in his big blue eyes, I am reminded of how lucky I am,to get to see his smile every morning,and every afternoon when I picked him up from school. I am so in awe every single day. He is such a blessing.



Logans Story Part 2


Logan receiving a treatment.


So Logan continued on with receiving his treatments every month,and blood work every week for 1 1/2 years. We found out we were expecting about 6 months into Logans treatments,we definately wanted another baby,but were planning after he was finished. But thats not how it happened. But we were excited to have another baby and for Logan to have a sibling. I was also trying to potty train around when Logan was 3,it was difficult for him because the Chemotherapy would come out in his urine,which I couldnt have contact with,so i always wore gloves.

Logan would receive his Chemotherapy and then he would have to have IV fluids for like 12 hrs. So he had to pee alot. The IV fluids helped wash the Chemotherapy out of his body.But I eventually got Logan potty trained right at 3 yrs old. He did wonderful. I couldnt change his diapers bc of Chemotherapy meds were toxic to the baby in my belly, if I came in contact with it. So the nurses helped me out until I got him potty trained. The nurses were AMAZING!! Ill get more into that in the next part.

Anthony and I had just gotten married 3 months before we found out Logan had a brain tumor,and had to do Chemotherapy. We clinged to eachother during this difficult time in our lives. We had a hard time talking to other people about everything that was going on because it was soo very hard to talk about even for us being husband and wife. I couldnt talk about his cancer without crying. We didnt know if Logan was going to survive,the doctors said there were no guarantees. They said Logan could have long-term effects from Chemotherapy. Like speech problems,mental delays,deveopemental delays,the urologist was really concerned about his speech.

 Logan was talking at 3 years old but it seemed he would forget some of his skills as he was going through the Chemotherapy. Chemotherapy is supposed to kill cancer cells,but the doctors said it can possibly kill brain cells as well. But I really tried hard to work with Logan,because he was the most important to me, to help him get better,and be there every step of the way,and teach him along the way. Even when your child is so sick,you still have to set boundaries and teach them right from wrong.

This whole experience was so difficult,but we were so very thankful Logan did very well with his Chemotherapy. He threw up after his treatments the treatment that had Cisplatin in it,because the side effect is nausea.  Logan slept alot throughout treatments and the time he was at home recovering from treatments. The doctors said Logan had to wear a face mask in the store so he would have a better chance of not getting sick throughout his Chemotherapy,because his white blood cell count,which is your immunity to keep from getting sick were so low,he could get sick very easily,and itd be life threatening, so we chose to keep Logan isolated for most part, because we didnt want to risk him getting Pnemonia,which he was very susceptable to getting. We washed our hands constantly. We wanted our baby to have no further complications.
He was so tired from treatment,and anti nausea meds made him sleepy.


Logan did not feel comfortable with the doctors,he was scared,bc every time he saw them they were poking and prodding at him. I would have taken his place in a heartbeat if I could of. You never want your child to have a complication,but things are not always in your control. Anthony and I wanted kids,we wanted a baby and when we had Logan he was healthy,beautiful,and just perfect in our eyes.  We had big dreams for him,which that hasnt changed. But we never thought about brain tumors or cancer in children.

You dont think about stuff like that,but when it happened we were blown away,there were so many emotions. You are looking to blame someone, I blamed myself,it had to of been something I did while pregnant with him,something I ate. But it wasnt my fault at all. Its just something that happened out of our control. Im just so thankful we found it,because if we wouldnt have things would have ended differently.

Logan was hooked up to IV machine on wheels from the time we arrived to get his Chemotherapy,until we left the hospital,which was 2-3 days each treatment. The IV machine tubing was so short all Logan could do was sit, he didnt have enough lee way to move around much. He didnt understand what the tubing was for,so he would try to run and the needle would come out of his port,so sometimes the nurse would have to re-insert the needle into his port. Which was very hard,it took 3 nurses and myself to hold him to get the needle back in,he really fought hard.

The hospital had helpers that worked for the hospital to come around to hospital rooms and try to do crafts and play games with the children in the hospital,but Logan was feeling so sick most of the time,he didnt care to participate. I would read to Logan and try to color and work with him,and he barely was up for that,the Chemotherapy was really hard on Logan.






Sunday, May 24, 2015

Logans Story Part 1


This picture is before we found out he had a tumor,he was eating cheetos.


 Logan started having noticable seizures when he was 6 months old.

 We took Logan to numerous specialists,saying he was having seizures,all the doctors said the same thing,he was just holding his breath. I said no,he is clearly having a seizure, at first at 6 months old it looked like a breath holding spell,but as he got older the seizures got worse and worse. His doctor in manhattan referred us to a behavior specialist because he said breathholding spells are behavioral. So I took the video above to show the behavior specialist. After showing her this video of Logan having a seizure, she said it was a breath holding spell. We were grabbing our bags to leave and all of a sudden Logan had a seizure,and the behavior specialist says yes he is having a seizure,and she wants an MRI done on his brain.
So we went up to Childrens Mercy Hospital Kansas City and Logan had an MRI done on his brain,we then went to our hotel to wait for results.Anthony and I get back to the hotel,we picked up some chinese food to eat.  It hadnt even been 30 min yet,our chinese had just been delivered, we had taken a few bites. When I get a phone call,its the hospital telling us Logan has a brain tumor,and they wanted us to come back up to look at the MRI results. I vomited. I could not eat anything more. I was bawling hysterically, calling family,i couldnt even say the word tumor without crying,every single time I said it.
We got to the hospital,we were like 10 min away. A doctor shows us the results, sure enough its a huge tumor, they said he needed to have emergency brain surgery. The tumor was the size of a golf ball,which is big in a babys head. Logan was 1yr 10 months at this time. The surgeon said there was a 60% chance he wouldnt make it through surgery without having major complications. This is where you had to make the decision do the benefits of surgery out weigh the risks of surgery. They said they would remove as much as the tumor as possible, then test it to see if its cancerous or not.
Logan had his brain surgery March 2011 at 1 yr 10 months old. The surgeon said hes pretty sure he got all of the tumor,but couldnt give the definite yes. So his tumor was sent off to be tested,and the results came back as a Grade 3 tumor,an Anaplastic Astrocytoma. It was Stage 3 cancer,theres 4 stages,stage 4 is terminal. It was the size of a golf ball. This is a picture from the internet, but this is exactly same picture the doctor showed us of Logans MRI. It looked like this


The surgeon ordered Logan see a Urologist,which is a cancer doctor. The recommended Logan do 1 1/2 yrs of Chemotherapy. To kill whatever cancer cells could still be in his body. Because they didnt know for sure if they got all of the tumor in surgery. The doctor also did a MRI of Logans spine,to make sure he had no cancer of his spine,because this specific kind of cancer can be found in the spine as well. The MRI of his spine came back clear. The doctor wanted to do radiation treatment as well to treat cancer that might still be present but said it would have majorly hindered Logans physical,mental developement.

Logan after his brain surgery.



So Logan started his Chemotherapy.  The  Urologist said Logan needed to undergo 1 1/2 years of Chemotherapy to help prevent his brain tumor from coming back. I took him up to Kansas City,which was 2 1/2 hrs from our house. I drove up there once every 3 weeks,so he could receive his Chemotherapy drugs through an IV port in his chest. He had to have surgery to have the port put in his chest. He eventually had his port surgically removed when he finished his treatments. Each of his treatments last 2-3 days. I stayed in the hospital with him the whole time while pregnant with our second son Landon. Logan had to have blood work done once every single week,which i had to hold him down,so the RN could poke his port and draw labs, so she could check his white blood cell count. To see if his body was ready and strong enough to receive another treatment. If they werent a certain number then he couldnt receive chemotherapy treatment,he had to wait a few  days and have his labs re-drawn until his white blood cell count reached the desired number. Holding Logan to get his labs drawn was one of the hardest things i ever had to do,he fought hard during his labs,he hated it. His doctor said he believes Logan was born with the brain tumor,based off the size and severity of when we found it. He described it as when Logan was developing in my belly an abnormal cell was created and that cell kept duplicating and caused a cluster of abnormal cells,which is a brain tumor.





Saturday, May 23, 2015

6 reasons I blog

1. Its theurapeutic.

2.Clear my mind.

3. Document my life.

4.Document life with my precious children,document their lives.

5. So my children can look back on their life,and have memories of what our life was like,and theirs.

6. Because I enjoy to blog.