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.