Info

Hey its me Nolan.On a new medicine for my eyes,its cellcept.It helps my eye disease to go away.Last time I went to the Doctor my eyes were 20(right eye)and 20(left eye) wich of course is really good.When I saw my eye Doctor last time he said it was quiet in both of my eyes.So thought I let you know.



Nolan

Here we go again....

Well...wow its been a busy month...The baby has had RSV and everyone has had colds and then also all this with Nolan...So the news today is that Nolan's eyes still have not improved, one doctor wants him back on mtx (chemotherapy) and the specialist in Boston believes that when he was taken off mtx his disease reacted, that there is something else out there for Nolan to take that will keep his eyes quiet while taking it and also when he goes off it keep him quiet too, Dr. Foster has also asked to re-evaluate Nolan himself in Boston again. My mind was spinning lastnight and trying to figure out different fundraisers again for Nolan so we could get him out to the specialist. We have great confidence in the dr's here but it has been 2 years since nolan has been to boston, we would really like to get him back there as that is where Nolan feels most comfortable. Along with all this that happened yesterday we also found out that Nolan needs glasses...this is due to other issues which are not his disease...I know we are not given more than we can handle but the plate feels full. We now have to start on another 2 year journey of meds with Nolan and if he goes back on mtx we have quite a few restrictions and living in new mexico with sun most of the time that will be hard but we did it before we can do it again. Please keep Nolan and our family and doctors in your prayers. I wish Nolan did not have to go through this, feels like constant disappointment in his life, although he is very excited about getting glasses. Feel free to email me with any ideas or concerns or anything...
all my love,
Sara

Nolan

Sorry for the mishap...Nolan's disease has returned and we are on yet another road. We go back to the dr. on March 16th after a two week period of steroid drops 6 x a day. Among the disease there have also been a couple other things that have popped up so he is undergoing testing for those. Please keep him in your thoughts and prayers as he now has more to do so we can kill the beast, if thats possible.
Love,
Sara

Nolan

Happy Fathers Day to all you wonderful dads out there......Nolans eyes are again stable and as far as going to Boston that is on hold for right now. Nolan has been doing very well, we have spent alot of time inside, we have alot of restrictions with the methotrexate he is on. As many of you know we have experienced another trial in our lives....On May 8th i had a seizure while driving and totalled my vehicle, Jc and the kids were in the vehicle but no one was hurt. We are very fortunate that things ended up the way they did, although for me the recovery has been a tough road i have had an outpouring of support which really helps. So thank you all for all you do for our family........
Love,
Sara

Update on Nolan

Hello everyone...its been awhile so thought i should sit down and write a little bit...
Nolan's eyes are stabile, no changes so we are very thankful for that. After speaking to a couple of his doctors it has been recommended that we take Nolan back to Boston for Dr. Foster to take another look at him since its been a year. So it is all in the beginning and planning stages but hopefully we can take him in June sometime. Nolan has had some struggles and missed some school but he seems to be holding his grades pretty well. Please continue to keep Nolan in your prayers and this upcoming trip.

All my love,
Sara


p.s. Thank you for supporting me through my eye disease. From, Nolan

Happy Spring...

We had Nolan's check up on friday and his disease in his eyes are still quiet and stabile. One doctor says to reduce the chemo and the other says to keep it since its doing its job and he has to be steroid free and quiet in both eyes for 2 years in order for his disease to go away. So now just waiting to have both dr's talk, never a dull moment. Nolan has had his ups and downs of being sick alot. We did manage to take a trip to minnesota for my grandma's 90th birthday, that was alot of fun and very busy. The kids are on spring break this week and nolan has had a fever a few days and now today it sounds like a cold again. We actually got a dusting of snow lastnight, probably our last blast of winter. Wishing you all a happy spring and thank you again for all your emails, we truly appreciate your love and concern for nolan.

Love,
Sara

UPDATE...

Just a quick update on nolan, he eyes have been stabile for 2 1/2 months now. We still do chemo on fridays and his immune system seems to be pretty compromised, he just had strep for 9 days but now is all better. We did get some info from the doctors and they will be taking him out of baseball for the season due to the sun exposure and being on chemo and the trauma that baseball could cause. Nolan has very good attitude about it and is ok with this, we will try and get him guitar lessons finally and see if he can play that while his outdoor activities need to be cut down.
And of course Nolan and Alix are so very excited to be big brothers and sisters, Nolan has to rub my tummy all the time and talk with the baby, it is so sweet.

Love Always,
Sara

Happy New Year.........we have had a very busy holiday season but we were so fortunate to go over to a dear friends house and have a wonderful dinner, sing christmas caroles, and open presents. I started going to a new church in November of 06 and as it would be met up with this wonderful lady and she has mentored me in so many ways i can't even explain. Here she is....meet an absolutely adoring lady...LENANN. The kids just experienced a very neet evening with her, she plays the piano and showed both of them a little bit. We can't thank her enough for her graciousness and love she has provided us, i hope and pray we all can have mentors in our life like her. Lenann organized nolans fundraiser at our church which was a burrito sale and was such a great success. Thank you Lenann for everything you have done and continue to do for the kids and i, i know you will be blessed.

We hope you all have had a wonderful holiday season. Wishing you all the best in 2009!!!

Sara, Nolan, and Alix

p.s. and also meet Barney, he couldn't be left out of the picture, he is photogenic too....

We are so Blessed...

Nolan received good news this time around, his eyes look pretty good, his left eye just has one little spot (infiltrate) at this time and his right eye is clear. So thankful for the news as we were thinking we might have to have another surgery but this visit went well. Now we will wait for the next 6 weeks to pass and hope for the rest to heal and the waiting game continues.
Nolan continues on chemotherapy every friday morning, he is doing really well with that and is not afraid of the needles anymore, whew...
Nolan and Alix are very excited for Christmas break, we don't have much planned but to take care of PAPA who is undergoing surgery tomorrow on his rotator cuff on his right shoulder. Of course Nolan feels he needs to be at the hospital for his PAPA and then help him out at home. We are also awaiting news as my dad has also had a prostate infection for 8 weeks and his blood level is still high after being on antibiotics for so long. Our family has been through alot this year but we are remaining strong.
Alix is now the singer in the family so she has her first program tomorrow night if it doesn't snow again, we sure have had some wintery weather.
Alix and Nolan are really struggling emotionally right now we having very trying days but we try and remain focused on god and what he brings us, my heart breaks and there is not alot of sleep but i know our faith with get all of us through. Thank you all for your continuued prayers, thoughts, donations, we greatly appreciate your thoughtfulness.
In his love,
Sara

Merry Christmas to all of you...

The good news...

We have finally received the news from the doctors...Nolan will continue on the path we started on and his x-ray came back pretty good, we are definetly so thankful that we are staying put here and continuuing with the original plan. Nolan has come a long way, his injections on fridays are going extremely well now, I am so proud of him and the accomplishments he has made thus far, not only with his medical trials but in school. I met with all his teachers this week and they just commented on nolan and how excellent of a student he is and how he has a big heart for others, his quality of work is remarkable they said. Sooo with all this we are so happy and taking one day at a time his next appt with Dr. Chiu is Dec. 12th. We hope you all have a wonderful thanksgiving and treasure this time with your families.

All my love,
Sara

We are singing PRAISES today...

Great news today...Nolan had his blood test and the hep lock placed, with the help of 5 people but we won't go into all that, the fact is is that it is done and all the testing is complete FINALLY.
Dr. Chiu found one spot in his left eye that he believes is some staining from bleeding so the pics will be sent to Dr. Foster and we will await his decision. Nolan is exhausted but is ready for his night, thank you all for your prayers and thoughts, they are greatly appreciated and his sister is so happy for him cuz he finally did the testing. woohoo. Wishing you all the best and be safe for those of you trick or treating tonight, we hope no ghosts or goblins get you.


Love,
Sara

The final decision...

Well today was another long day but we have some answers...Nolan will undergo next friday Oct. 31st some blood drawing and at that time they will keep the IV in him and send him out with a hep lock and we will go right to dr. chius office to have the angio done, Dr. Foster was unable to see anything without the angio being done. Nolan has had a cold and has seem to relapsed with it and now he has IMPETIGO, so we will now be on antibiotics to treat that. As far as the chemo we will stay on our regular dose and wait until this testing is done and then dr. foster will evaluate his treatment.

Love,
Sara

Pumpkin Patch

We spent some time going to the pumpkin patch yesterday and it was a very beautiful day, we were able to take our little cousin Angelina with whom we all just adore but her and Alix have a very special connection, Alix loves to take care of her and play with her. Nolan went back on Friday to try and re-do the test and still was very nervous and was unable to do it. At this point, Dr. Chiu will send the photos he has to the specialist in Boston and we will wait to see what happens when he see's them. A very dear friend who is a clinical psychologist has taken nolan under his wings and nolan has gone through some in depth counseling this weekend and will continue for a couple weeks as so many things in his life are challenging for him right now. So we are so thankful for this friend to step up and help. Nolan goes to the university on wednesday and then back to Dr. Chiu on the 31st so i will keep you updated as we get news. I hope everyones fall is going well and we think about you all often.

Love,

Sara

NO Test today...

Just wanted to tell everyone that unfortunately after 31/2 hours of being at the lab Nolan had a very hard time and refused his test. He is having a very hard time so many things in his life are happening, we will know tomorrow when they will reschedule it for. Please just keep him in your thoughts and prayers as he is struggling right now...i will post when we get the test done, we are hoping friday will be the day, the way the nurse sounded tonight when we left. Thank you all for all your phone calls, posts, and emails as we are still going through this trial in our lives, it gives us great hope.

Sara

Nolans Concert

Nolan and his first orchestra concert. I wish you all could of heard this concert, this was the beginner class and boy did they do incredible, and to hear Nolan play in front of people for the first time was breathtaking, i am so very proud of him and how fast he learned music and to play his violin. and especially special because Nolans was sick and missed alot of school and right when we came home he had spiked a high fever. Way to go Nolan...you did awesome. As of today we are still here in New Mexico, Nolan will undergo a test on Wednesday to see if he has bleeding or swelling behind the eye and then the doctors will decide at that point what our next step will be. After a very long week and a half of getting doctors together and meeting with them we all finally arrived at this decision. Nolan is very nervous but he is covered in prayer that we will take it as it comes. ok, now Nolan would like to say something.

One proud superheros mom,

Sara

Hi my ochestra concernt was fantastic, I had so much fun playing in the concernt. Even though I was sick i'm one strong boy,this boy will do anything no mattier if i'm really sick I will preform at my concerts for a good grade. I hope my test go's really well.And my mom and my sis support me a lot ,now it's my turn to support them as well as they are doing for me.

SUPERHERO,

NOLAN

STAY STRONG....CONT'D

Well we have received word from Dr. Foster and he has reviewed all of nolans reports from both dr's and is requested to see Nolan SOON. He would like to see Nolan on Oct. 13th. Of course my mind is spinning, he feels the MTX is not working and we need to move onto something else. I am just asking for your prayers and support because of course i want to do the right thing for Nolan, I am just at a loss right now. His disease is active again. Dr. Foster feels like he really wants to see Nolan to re-evaluate him and give him other recommendations. So this is our latest news...we will have more pics of chama posted later today thanks to my sis who knows how to do all this but she has been very sick with bronchitis and her diabetes has been out of control, we HOPE she gets better soon too. love ya sis.

All my love,
Sara

STAY STRONG...

We had a fabulous weekend up in the mountains, we still don't have any news from Dr. Foster in Boston but we will continue to STAY STRONG and takes whatever comes our way. I will keep you all posted as soon as i hear from the doctor.

Sara

Breaking news...

Good Morning...as i woke up this morning i received an email from Dr. Foster the specialist in Boston, he is requesting i get Nolan back to him SOON. I will wait for the Dr's to get all there information to him today and try and talk with him so i can ask some questions. Of course i will do what it takes for Nolan. Please keep us in your thoughts and prayers to make the
right decision for nolan. We have had a couple long weeks with other things going on in our family so my mind is spinning. My parents are taking us with them to Chama this weekend, so we will be able to sit and meditate, revive ourselves and take in some fresh mountain air. If i have any info today i will send it along to everyone. I can't tell you how much it means to me and the kids to receive all the emails, postings, phone calls, visits, and what touched me alot was to run into a very dear friend of mine and her daughter that i haven't seen in a long time, what an incredible run-in, i am so blessed for all of you.

Sara

Staying HOPEFUL...

We just got done at Dr. Chiu's office and unfortunately Nolans disease has come back in both eyes. This was a quick change but we know that with this disease this can happen. I have already placed a phone call to the dr. at UNM who is administering the MTX, Dr. Chiu said we need to increase that. I will also be contacting the specialist in Boston to see what he has to say about everything. We have to go back to Dr. Chiu in a month and see how his eyes look then, he feels that if it is still there we will have to do steroid injections in both eyes. Please lets lift up nolan and pray for him in the next month, in the meantime we will continue to be HOPEFUL and strong and endure each day as it comes.

Sincerely,
Sara

Quick Update...

Just wanted to give a quick update...we switched from the pills to injections, nolan has not had any side affects except the continual bruising. The injections are going well, nolan has decided he doesn't like it now but i am hopeful he will get used to it and start doing it on his own like he wanted too...he did so good on the dummy but now for himself its a little different and not used to having needles and medicine at home. He will go back to have his eyes checked in two weeks so we will know more then and bloodwork again in 6 weeks. We were able to go up to Chama, New Mexico in northern New Mexico and enjoy the fresh mountain air, which we absolutely love, we had a great time, rained the whole time so we played alot of pool and cards. The kids just love going up there it is so very peaceful...thank you again for all your continuued support, it keeps us very hopeful.

Love,
Sara