June 3rd, 2014

Once again I'm thinking, "It sure has been a long time since I've updated this blog!" Where oh where does the time go?  
In November, Peyton has his mediport removed. It was a beautiful day and we were happy to celebrate it!  We knew of course there was always a chance it would have to be put back in but we remained hopeful that he was done with chemo.  From December 2013 to February 2014 one tumor  grew pretty aggressively and caused Peyton to lose even more eyesight.  He already doesn't have much vision left so this was a real blow to all of us.  Doctors told us he really must go back on chemo but we were left with few options as Peyton has already been on many different types of chemo and none have seemed to work long term.  The doctors shared some options with us and had us return home to do some thinking. One of the drugs doctors were talking about had us very concerned.  We could start it, but we might just be increasing Peyton's chances of getting a secondary cancer.  There just aren't enough cases like Peyton's to know for sure what the chances would be, but it would be a risk and a concern.  How do you "think that over????"  It was a lot to process and we prayed that somehow we would be guided into the right direction.  The doctors assured us they would do all they could to look for the best treatment options that would be: 1) the most effective and 2) the one that would hopefully have little side effects and be safe.  That's a lot to ask but when we returned 2 weeks later they did have an option for us.  We started a new chemo drug on March 1st. It's a daily oral pill.  None of us can be certain it comes without problems later on (potential cancers etc.) but it was our best option and we all felt comfortable in trying it. As the parents, this is one of the hardest decisions we've had to face.  Do we let our son lose his vision completely and deal with other issues these tumors could cause or do we fight to try and save what he has left and maintain his current way of life???? I spent many nights going back and forth with that issue.  I never resolved anything to be honest....I just put it in God's hands.  I know he has a plan for Peyton, for all of us actually.  I just have to always trust in that. 
Here we are....3 months into the new treatment.  We've had 2 MRIs and it seems to be working.  I can't say it's been totally easy.  He's been pretty sick twice; once ending up in the hospital.  It really seems to weaken his immune system so he's been more suseptible to viruses.  This chemo also causes some really nasty mouth sores that cause him quite a bit of pain.  Thankfully they come and go pretty quickly. I've witnessed his overall energy level go downhill too.  That's been hard.  He sleeps a lot and gets really tired on most days. I would love for him to get to be an everyday kinda kiddo that doesn't have to deal with all this stuff but that's not in the cards for him. 
He was very sick and missed the last week of school.  :( That really bummed him out because he LOVES school! However, he was chosen as Student of the Month for May and was beyond excited for that!  He's such an amazing little soul. He really appreciates life and has such an amazing attitude about everything.  He takes life just as it is and doesn't complain.  Again can't we all learn from that?  Peyton will have another MRI in July. We've learned to plan holidays an vacations before MRIs not after, so as not to dampen the mood if results aren't good. Therefore before the MRI in July we have lots of fun planned.  We're so very excited to be taking a vacation to Disneyland and San Diego.  We look forward to making new family memories and enjoying our sweet little boys!  :) 
I'll update in July.....

October 14th, 2013

Wow!  It sure has been awhile since I've updated.  I guess that means our life has returned to "semi-normal"....whatever that is!  Peyton had pharyngeal flap surgery on July 10th. It was a rough 3 weeks but we made it. He was very sore for the first week, and then very hungry the second week. He was on a liquid only diet for 2 weeks and then a soft foods diet for a week after that! He says he never wants to eat broth again!
I'm proud to say his speech is so much better now!  We are very thankful to have great doctors who first discussed this with us nearly a year ago!! Now here we are.  Peyton is amazed that so many people can understand him now.  It's been life-changing for him. 
He's very busy in 1st grade learning all sorts of new things!  He made the move from private school to public this year.  That of course was a transition, but I think he's adjusted now and we are in a good routine. 
So Peyton was supposed to start chemo again in August after he recovered from surgery, but the MRI in August showed Peyton's largest tumor decreasing ever so slightly.  This made the doctor want to wait 3 more months, without treatment, to see what the next MRI shows. We were so happy!!!  We returned home for yet 3 more months off!  (Peyton hasn't had a treatment since March!) We've enjoyed our weekends at home so much.  I can't believe how fast time has gone by. We will return on November 8th for the next MRI.  I must say my stomach is already in knots and I think about it daily.  I can't wait to hopefully get to a place where tumors, MRIs and neurofibromatosis don't consume my thoughts.....but that's the way it is for now. However, as I've said many times before, I'm so blessed to be his mom! I will not complain........we have a beautiful son that makes this world a much better place to be! He has taught me strength beyond what I ever thought possible. I'll update in November!

June 13th, 2013 - MRI

Thursday Peyton had his 3 month MRI.  We knew that if this MRI looked good and none of the tumors had changed then he would have his mediport removed the next day.  I was (cautiously) optimistic things would go on as planned.  However, I'm always a nervous wreck on MRI days.  My stomach is in knots and I'm always anxious to visit with the doctor about the results.  This day was no different. By 2:00 we were meeting with the oncologist to discuss the results.  He immediately told us we had things to discuss and went over the MRI images with us.  It was clear one of the tumors had grown significantly.  It had actually doubled in size since March.  He also informed us that another tumor is now showing up on the scan.  The news hit us pretty hard and the doctor left us for awhile so we could gather our thoughts and emotions.  Nurses came in to flush out Peyton's mediport and Dr. Foreman came back shortly after that.  He said that Peyton will need to go back on chemotherapy.  The new tumor may cause more visual issues if it continues to grow as it is now.  We discussed Peyton's upcoming palate surgery in July and the doctor feels it's important we continue with that surgery.  The new treatment won't begin until after he's recovered from that.  In early August Peyton will have an eye exam and MRI to help determine a new treatment plan.  Dr. Foreman explained he's not sure what chemo treatment Peyton will be on....we've tried most all the combinations. Nothing has worked really well for Peyton.  We've seen stabilization of the tumors (and that's good) but nothing has worked as far as shrinking them.  Guess we'll see how that turns out. As he explained there are other options, for example radiation, but that isn't the method of choice for NF patients due to the risks it poses.  At this point the tumors are low grade.....treating them aggressively could cause them to grow and become malignant.  He said unless we have to do that we won't.  The risks out-weigh the benefits, but if things get worse, or his vision continues to deteriorate then we may have to weigh those options again.  At this point we absolutely don't want to think about that.
On a brighter side, Dr. Foreman said there's some very positive research being done for NF patients and there's some new treatments being tried out on other types of NF tumors.  He said it's a few years before it will reach the general population but it's coming.  THIS IS GREAT NEWS!  I know there are lots of people working hard to fight this disease.  Bless their efforts!!!!
I'll update again in July as we go into surgery.......

March 15th - Chemotherapy Treatment #76

March 15th - Chemotherapy Treatment #76

What a day we had!  Friday we took Peyton in for chemo as usual.  He enjoyed some art time with Miss Pat.  He loves when she's there and he can work with her. She always has some fun projects do while the kids get treatment.  Peyton adores her and the feelings are mutual! I can honestly say she's been one of the best parts of having to go to the hospital each week.
After chemo we went down for Peyton's MRI.  As always my stomach was in knots.....MRI days always make me nervous because we never know what news it will bring.  For the past several months the MRIs have shown the tumors to be stable with no new growth.  That's good news for us because it shows the chemo is at least keeping the tumors from growing. (Of course it was our hope, starting out 3 years ago, that treatment would shrink the tumors but for the most part that hasn't been the case.)
Peyton was coming out of anesthesia, when our 2 doctors came downstairs to let us know the MRI results. When the oncologist said that the MRI looked good and there were no changes,  I breathed a sigh of relief.  I knew we could still plan on taking a break from chemo in May. He then concluded that since Peyton has been on this latest treatment for 12 months we could stop at any point; meaning that day was his last treatment! The doctor said, "You're done!!"  I started crying so hard!  I didn't know what to say.  I think everyone had tears!  They all know what a long hard road this has been for us. But we did it! Every appointment, as a family....we did it! We were there for Peyton; showing him that as a family we are with him and we would help him get through. We are stronger because of this. We made it to the end!
Now we wait........Peyton gets a chance to recover.  I can't wait to see color return to his cheeks.  I can't wait for the dark circles under his eyes to go away and for his energy level to be that of any ordinary 6 year old.
  We wait, watch and pray. He will have MRIs every three months.  We will continue to have eye appointments every three months.  Those tests will determine the next steps.  If the tumors and his vision remain stable for one year, then we can breathe a bit easier.  At that point we could stretch the MRIs out to every 6 months.
   Peyton isn't "cured".  There is no cure for NF.  The tumors are still there. But we hope this is a new and different chapter in our lives. We know there will continue to be challenges along the way.  That's the way it is with NF.  Peyton will continue to inspire us all to do everything with a smile and a great attitude.  We can handle whatever comes our way......
Thanks to everyone who follows this blog.  I will continue to keep it updated as new developments happen.  Thanks for the kind thoughts and all your prayers.  Please keep them coming.

   

March 4th, 2013 - Chemotherapy Treatment # 75

We had to move chemo from Friday to Monday due to Peyton being sick on Thursday. He woke up early Thursday morning with a yucky stomach bug. Charlie stayed home with him on Thursday and by Friday (mid-morning) Peyton was well enough to make the trip to Denver. We had an afternoon eye appointment and those are scheduled months in advance. I was happy he was feeling better.  At least better enough to get through an eye appointment.  His exam went well.  His vision has remained stable now for several months.  His right eye is 20/400 and his left eye can see out to about 3 feet.  Dr. Enzenaur has recommended that Peyton try glasses with bifocals on a permanent basis.  He's not sure this will help much but he said it's definitely worth a try.  He already has been wearing reading glasses for a couple of years so he's familiar with glasses just not bifocals.  That will require an adjustment period.
From Friday night to Sunday night Landon, Charlie and I all got sick with the stomach bug Peyton had.  Yuck!! It was not a fun weekend, but thank goodness by Monday morning we were all recovered and headed to the hospital for a full day of appointments.
Peyton had chemo first.  All went well. Then we headed to meet with the ENT surgeon and a team of speech therapists.  Peyton went through quite an extensive evaluation from this team.  They were trying to decide if Peyton's speech concerns were because of anatomy issues or if speech therapy could help correct his speech.  After a couple hours, and some really interesting assessments, doctors concluded that the only way Peyton's speech could improve would be to have the surgery.  Unfortunately, this doctor told us that the surgery is not a guarantee that his speech will improve immediately. If it doesn't work the first time then Peyton may have to undergo another surgery.  That sounds frustrating, but if in the end it can help him, we feel this is the best option.  Many people (who don't spend much time around him) have a very difficult time understanding him.  As his parents, we understand him the majority of the time, but we know it's hard for others. I pray this works the first time and we don't have to keep going back.  The surgery will be in July.  That will give him time to get his body healthy and recover from chemo.  Doctors say he must be off chemo for at least 6 weeks before heading into surgery.  We'll try to squeeze in as much fun stuff as we can during the first part of summer break!  The second half will be spent recovering.  

February 15th 2013 - Chemotherapy Treatment #74

Today Peyton had chemo first and after that a dental appointment for a cleaning. Our last dentist visit was 6 months ago. I'm sad to report he has 2 new cavities. It's so frustrating to be doing everything right (brushing, flossing, rinsing) and still we have to deal with cavities. The dentist said it's a battle that we can't control. We just have to keep doing all we're doing and know that sometime soon chemo will end. She's certain the effects of chemo are taking its toll on Peyton's teeth. It's hard explaining that to Peyton. I tell him all the time we have to brush and floss so we don't get cavities and yet we go to the dentist and each time there's been new cavities! Grrrrr......he'll have to wait until after chemo ends in May (that's when we are projecting a break from chemo)to get the cavities fixed due to blood counts etc.

February 1st, 2013 - Chemotherapy Treatment # 73

Today was a pretty ordinary day. We like those days because it means we are in and out of the hospital fairly quickly! Peyton took one of his favorite nurse's a Krispy Kreme doughnut. He made sure to remind us to stop and pick one up before going to the hospital. Of course we did! He ran in to give it to her. He was so proud. He knew she likes Krispy Kremes so he informed me that next trip we would have to get her one. I love this boy! He's so thoughtful and genuine. Peyton had been on some medicine to help with heartburn. It seems to have cleared up the problems he was having so he won't have to be on that anymore. Always good when the side effects are mild and can be easily treated. Poor little guy....I can't say I've ever had heartburn so I can't imagine how it feels. He was complaining daily for awhile and was really hurting. The doctors said it's not uncommon for chemo patients to experience heartburn. He's felt so great lately and we are thankful! Dana (Charlie's sister) met us at the hospital. We all enjoyed a nice lunch together and then we took Peyton shopping for all his Valentine's Day stuff. He was so excited to pick out valentine's and gifts for everyone. Then we spent the rest of the evening with Nick, Dana and Tyler. Good food, laughter and we were happy to have Sara and Deb join us as well. It was the perfect end to a long week.