February 15, 2014
We celebrate Elijah's birthday!
Elijah 2/15/2003 - 11/25/2005 He was Nathanael's older brother. He had a mitochondrial disease called Leigh's syndrome. We knew early on his life would be short and filled as many memories into... our hearts as we could. Elijah lived 2 1/2 years. He was an amazing little boy. Even though Elijah's life and death came before Nathanael, from day 1 we have shared who his brother was. It is important to us to talk about him, who he was and how he taught those around him. Every year we celebrate his birth in our own way. We celebrate the birth of a perfect child, in every way God made him perfect. We miss him everyday and never forget our sweet Elijah Bear!
This year will be harder with the compounding grief of the loss of our sweet baby Isaiah stillborn in September 2013. Visiting the cemetery is incredibly crippling for me. There is no other place that makes my journey so real. For years I have visited Elijah, joyfully. I will do my best! God holds my broken heart in his hands. He walks with us and Nathanael as we more forward. February 15th I will breathe, walk one foot in front of the other and look for a bit of joy in the sea of sadness. I will remember how honored I was and will be for eternity to be Elijah's mommy.
February 18, 2014
Not much news to report. My boy is doing his best. His energy is shot and is taking a while to build. Tough road even though it has been 2weeks since his last treatment. Baby steps. His appetite is not 100 percent but he is eating a little better. He has a new found addiction to chocolate which is not helping too much ; ) there again baby steps. Keep him eating something then get him to eat the right stuff.
IV-Pantanimine this Wednesday! antibiotic will be required in some form (pill or IV) for the next few months every 3 weeks or so until his body has built up its immunities.
CT & MRI march 4th not as soon as wee wanted but I am sure all will work out with it being pushed.
February 27, 2014
Just a quick update on my sweet brave boy! He has been working hard to get caught up in school at home! He is still doing home bound at least until his scans are done.
He is looking better everyday. He still is pale but getting little specks of color here and there. His appetite is getting there by no means does he eat a ton but he is eating and that is wonderful. No hair has made appearance yet but we are watching he is a month off chemo this week!
March 2, 2014
Tonight at bedtime my boy looked like he had the weight of the world on his shoulders. I asked him is he was worried. He looked up at me and said sissy said my scans are Tues not tomorrow. I said that is true. He says "so I can eat tomorrow" !
I am sure he thinks of the magnitude of his scans. He is a smart little boy. I breathed a sigh of a relief just to know he was thinking about the fasting instructions instead of the scans. Whew
March 5, 2014
The meeting with Nathanael's doctor today gave us the answers we had been waiting for NED! This means no evidence of disease. Cancer Free! His scans looked good. Of course there are things they will keep an eye on for any changes in future scans.
Today was a big day and we quietly celebrate at home. I realize that my reserved attitude kind of threw a few off. I am still processing and will be th...is awesome news.
Personally I am an emotional mess. The morning nearly gave me a heart attack, I couldn't listen and talked unendingly. My son is cancer free today and honestly the only thing I want to do is cry, ball like I have never before. I wrote a huge post but tried to shorten (yes this is shortened lol) all my stress babble so as not to bore, confuse or worry any of you. Bottom line for me I have held in so much in over the last year and the flood gates are open. Processing the death of one child, loosing another and looking at an evil like cancer inhabiting yet a 3rd child is overwhelming I/we put a lot on hold both physically and emotionally that we are free to deal with now.
We are overjoyed for Nathanael he has fought hard and overcome more than most 6 year olds will ever be asked to do. I am very proud of my son. He has healing and work to do before his life will be routine again. I am very proud of my daughter also for doing her best to support him, giving up her mommy for much of the hospital time and helping her daddy here at home. I am thankful for my soon to be 2 year old who adapted as best he could to mega changes in his little world. He is a bit crazy at times because of our journey, it has molded him as it has molded each of us.
Thank you all for supporting us. I will update as needed. Nathanael will be followed closely for a few years to come.
What the future looks like as for Nathanael's medical care.
March 12th is our little guys 2nd birthday on that day Nathanael will be having surgery to have his port removed. It will be a big day.
He has scans every 3 months (CT and ultrasound) for a year then scans move to 4 months for a while than 6. He will have follow up with his kidney specialist for the rest of his life to maintain his 1healthy kidney. He will have follow up EKGs and cardiology testing as they will monitor for any damaging affects from chemo. Even though his medical journey is not over nor will it ever be we will be and I ask you all to pray he remains cancer free forever.
Our father in heaven has walked with, held, carried and now leads us through our difficulties. Our God will be with us every step of Nathanael's and our family's healing.
March 13, 2014
Nathanael finished his last homebound school today. He will start half days on Monday! We are very excited for him. His classmates are excited he is coming back and he is excited. With this change will come lots of added things for him. It will be hard as the workload will be heavier and he will share teacher time with the other students unlike the one on one he is getting now.
Please pray that the transition from homebound to half days and then to full days goes smoothly and he can avoid getting sick so he can finish out the school year!
March 17, 2014
First day back to school since August! So much excitement. A little nervousness for us, only a half day.
It will be a good day no matter how it goes! "Firsts" are always a bit hard.
March 19, 2014
So this week has been out of sorts. Back and forth to school dropping off/ picking up. Not having Nathanael home will take a bit of getting used to. It has been a long time since it was just me and my little guy. Today is early release day and I am excited Nathanael will be going all day! He has done very well this week! How hard it must be for him going from one on one low volume work to fast paced large class and way more volume. He is hanging tough! He has a long way to go and hopefully baby steps will get him there!
March 21, 2014
Today...
I am filled with joy as Nathanael makes his way through this Friday. It marks the end of his first week back and the beginning of spring break.
I am incredibly proud of him. He has missed so much school yet headed back into class, took his place among his peers and this took a huge amount of bravery. He has areas to work on but I look forward to watching him sprout like the hairs on hi...s head! I am also incredibly proud of his twin sister who has been supportive, especially this week. She has encouraged and helped guide him to some of his new normal which will become routine.
Next Friday my twins will be seven. I am a little emotional about it as they have experienced much truth about life in those few years! I celebrate this birthday as a huge milestone for them and praise God with all my heart for the gifts that they are.
I thank each of you for following our journey and blessing our family with your thoughts and prayers.
March 28, 2014
Happy 7th Birthday Nathanael
April 17, 2014
Nathanael continues to grow stronger everyday. The excitement of going back to school has worn off a bit and I think he would like to sleep longer lol. He is a trooper! At the end of this month he meets with his kidney dr to monitor his remaining kidney. Just letting you all know he is good.
April 19, 2014
Hanging out at the kidney Dr waiting for his check-up!
This is his first visit since his diagnosis in January 2013!
The visit went well he looks good we talked about what dos and don'ts of life with 1 kidney diet/activity. They took bloo...d (1st needle since his port out = lots of screaming) I am sure they will call if anything is off. Hopefully no call means we are good. On the oncology side he will have scans (ultrasound & CT) in June and that will also monitor the remaining kidney.
Overall good visit
May 5, 2014
Mother's Day was a big deal when I miscarried our 1st child in 2000. It was heavy and sad. It took a couple of years thereafter to have Elijah. Each and everyday thoughts of having a child consumed me, it was all I wanted. After Elijah was born it took on a new meaning. The year after Elijah died I wanted to just skip it. It was the worst holiday ever. The next year the twins were bo...rn. It was joyful! I was a mommy that could hold her children. Then years of it not being a big deal till now.
For moms that have lost a child some holidays just suck, Mother's Day is one of those. We are always reminded of the child(ren) we are missing, our empty arms and the holes in our hearts. Surprisingly for me even after such a difficult year I am excited for this day!!! I celebrate my mom who gave of her time, money and left her home and life to love and care for my children this last year when I could not. She flew out to colorado at a moments notice when we lost Isaiah. I needed her and she was here. We grew up joking that she would cut an arm or a leg off if someone needed. I believe that more today than ever! She knows what it is like to lose a child (Jason-my younger brother) and she knows what it is like to have a child fight cancer (jenny-my sister leukemia who is a happy mom of 4 today) I can only imagine her heart as she watched me her daughter go through it to. I love you mom. Not everyone has a mom like you and I am thankful that you are my mom.
This year is a year to celebrate being a mom! My house isn't always clean ok almost never clean and my patience level is on the lower side these days. I have 3 children in heaven. One that lived 2 years, another that didn't even get to take his first breath but I held him and there was a 3rd I never got to hold only see a little picture of a peanut yet there was a heartbeat then there wasn't. Not things to celebrate so what is? I celebrate the fact that I have 3 Fabulous children, not perfect in the worlds eyes but perfect just the way God made them. I celebrate that Nathanael is here with us and pray that Cancer is behind him forever. This Mother's Day I will know that I did all I could for my children during an impossible year even though there were times I felt torn and times I felt undeserving.
I praise The Lord for the mother I have, the mother in law I was given and for allowing me to become a mom and have these beautiful children.
Happy Mother's Day to all of you!
To Those that desire to have a child, those that have lost their children and those that get to grow them up. I wish you all happy Mother's Day!
May 7, 2014
Nathanael is so excited he started gymnastics yesterday! Sure he is skinny and has to build up a ton of strength but he worked hard at everything!
I was excited because he enjoyed it! He never really had much interest in it till now. We will see how it goes.
As a parent sending your kids out to do activities is a bit nerve racking when they have been through all that he has and keeping in mind the one kidney thing. Even so I am excited to see him get out and enjoy something!
May 23, 2014
Last day of 1st grade!
I am so proud of these two! Nathanael walked a journey this year that was at times impossible to watch and as his mom the hardest part is that I could not do it for him. He had to and he did! He reached inside and fo...und the courage to get through some pretty cruddy things.
This sweet smiling little girl is one tough cookie on the outside and one big mushy ball of sweetness once she lets you in. She has walked a difficult journey also. Being a sibling to a sick child has it's own challenges. She may not have the external scars to prove it but has had to fight hard to get to this day also.
Cancer does not just effect those who were diagnosed, it shows itself in their family, friends and everyone that surrounds them. The feeling of helplessness is overwhelming. We do what we can to support them and walk with them.
These two amazing kids still fight like crazy but when they don't it is a joy to watch them. They were born together and they stick together!
2nd grade is gonna be totally awesome!
June 11, 2014
Cancer stinks!
Nathanael's 3month post treatment scans are coming up Friday June 13, please join us in praying for clear scans (NED). He has enjoyed these last few months being a kid!
I hate that life still in a way revolves around cancer. I want to make plans for more summer fun and friend play dates for next week but no planning until....
I have tried not to let it consume me and life does ...keep me busy yet relapse is always there in the back of my mind, not something to stress over but think about yes. I don't let Nathanael onto the importance of the scans but I think in a way he knows so to not produce mega anxiety for him he knows scans are Friday but we really don't talk about them much.
Ultrasound
CT
Lung function
Cardiology
Oncology
Please keep us all in your prayers and especially pray for Clear scans!
