Friday, January 10, 2014

Busy Week!

Brayden has been one very busy little man since turning two! He had a wonderful Thomas the train themed birthday surrounded by our family, and he got lots of awesome presents!
Since his party on Saturday he has been to see his friend Tracy for his two year old pictures. She did wonderfully as always and I am excited to pick our prints up next week! She was kind enough to get him a present for his birthday and I was overwhelmed by her kindness and generosity.
He has also been to the hearing clinic for a hearing screen, been to the oncology clinic for labs, and also been to his pediatrician at KU. This little man has one very busy schedule!
As for those appointments, let me fill you in on what I learned. Per our pediatrician, Brayden is tracking somewhere around 20 months developmentally. He is doing most everything on the 18 month checklist, and only a few things off the 24 month checklist. I am amazed and very pleased to hear that after everything he has been through he is only a few months behind! His front tooth is mildly discolored (but its been that way since it came in) so our pediatrician also recommended Brayden see a dentist. Poor kid can't catch a break!
 His hearing test was basically inconclusive (as usual) since he is mostly uncooperative with the audiologists, so he will have a sedated hearing screen on Monday following his MRI. He will also have labs on Monday while his port is accessed for the MRI to verify his counts are high enough to go to the dentist. On Tuesday we will go to the oncology clinic to view the MRI and discuss the plan for Brayden. He will have to be accessed again on Tuesday to received his monthly IV antibiotic, which can cause nausea, so he will also need IV Zofran and IV Benadryl. I was very surprised to hear that Brayden will require this antibiotic for the next 6 months even if he takes no further chemo.
On Wednesday our therapists will come see him at home for his weekly visit, and on Thursday he has a dentist appointment. Due to his immune system being compromised from the past chemo he will require an antibiotic prior to his dentist appointment, and will only be allowed to go if his counts are "good". Hopefully we will be able to go to the dentist and get out in time for Brayden to go to "school".
The above picture is Braydens "beaded journey". This is something the oncology clinic does for the children and their families. Each bead symbolizes something he has done since his diagnosis. There is a bead for port access, clinic visits, admissions, blood transfusions, ER visits, and so many more. I know its hard to see in the picture, but there is approximately 150 beads and the string is as long as Brayden is tall. Someone mentioned to me that they thought stringing these beads was a not great idea and said I probably shouldn't do it. I (of course) did it anyways, because while it is sort of sad, it's also an amazing representation of Braydens strength. He earned each one of these beads and (as I have said before) it is important for me to be able to go back and look at how hard Brayden fought during this journey.
Prior to yesterday, I thought that stopping the chemo would allow Brayden to have a more "normal" schedule, but I guess that was just wishful thinking. I have so many questions for our oncologist on Tuesday, and I am hopeful he will have some answers. I know he won't be able to answer all the questions because he can't see the future, but I am hoping he will be able to calm me some. I wonder how long they will leave his port in. Its just an infection risk if he won't be taking chemo or requiring labs, but I don't want to pull it before we are sure the tumor is not growing. I am wondering if we an change his IV antibiotic back to an oral form since he won't be taking chemo any longer. How soon can he restart his vaccinations? The list goes on and on.
And let's not forget that all of this is pending an MRI on Monday. What if the MRI shows growth or tumor progression? Then we will be back to the drawing board........I think it's safe to say that the MRI associated anxiety has begun :) Prior to anything Brayden has to do that's "not fun" I try to do something that we will all enjoy. That being said, we are headed to "Sesame Street Live" tonight with mawmaw and pawpaw, my sister, Logan, and Braydens bestest friend Lizzy. I hope they have a good time!
For the next few days we will be praying that Brayden does well with the sedation, that the tumor is stable, and that we will have patience with each other as we sit around and wait for the results. I will keep everyone posted, maybe not here right away, but definitely on his facebook! Thanks in advance for everyone's prayers and positive thoughts.

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