January 2008 Archives

Wyatt had his 100 day biopsy today (a little early).  They also took out his central line.  It looks like we are heading back to VA Beach this weekend!  Wyatt still has a lot of restrictions and will be cared for closely by the clinic at home.  We are all very excited to get home but we are still anxious about Wyatt's recovery.   His risk for infection is a lot less now that his line as been removed; however, his immune system is still very weak.  And we will need to remain very cautious about exposing him to germs and bacteria.  Still living life on the edge....but for now, we are feeling very happy and hopeful.

Wyatt will be scheduled for another biopsy at 6 month post transplant in May.  This procedure will be done here in Minnesota.  If all continues to go well and things look good at the 6 month biopsy, wyatt will be able to live life with a few less restrictions.  And, we will be able to experience Minnesota in the spring!

We are going home just in time for Wyatt's cousin Cameron's 7th birthday party.  Cameron is doing something very special for Wyatt, he is having a fundraiser birthday party for Fanconi Anemia.  Cameron is asking his friends to make a donation to The Fanconi Anemia Research Fund instead of bringing him gifts.  His birthday party is going to be held at The Bounce House in Virginia Beach.  The Bounce House has generously offered to join the fundraising effort by opening all day on Feb. 23rd and donating 30% of the proceeds to FA.  The local media has become interested in Cameron's unique and generous birthday parties (he has had fundraiser birthday parties for the past 2 years) and the party is getting lots of coverage.  Here is the link to the first of several stories: 

Wyatt is still doing well.  He visits clinic only once a week now which is great.  His counts are still holding steady.  And we are so very thankful for his progress!

We have decided to stay in Minnesota until his Day 100 bone marrow biopsy.  This date falls the first week of Feb.  Oddly, I think it falls exactly on Owen's first birthday, Feb. 7th.  We are all eager to get home but it is more practical to stay here.  Everyone is comfortable here and flying home and back again just 2 weeks later would have been stressful and costly.  Although we might question this decision on Saturday when the temperature drops to 3 degrees.

When we do go back, Wyatt will return to the clinic in Norfolk for treatment. We are not sure on the frequency of his clinic visits at that time. Wyatt will be reimmunized sometime between 9-12 months post transplant.  He will return to MN at 6 months and 12 month post transplant.  Until that time, he will have a weakened immune system.  Unfortunately, complications could arise at any time and we will always have to be very aware of that possibility.  We will also always be on the look out for new complications from FA.  We are not quite sure how to manage the anxiety that comes along with having a child with a chronic illness. I guess we will just figure it out along the way.  At some point, I suppose you have to learn to roll with the punches and focus on keeping life fun, happy and normal.   I think this will be a challenge when you are always waiting for the rug to be pulled out but I do not want our lives to be defined by FA.   Basically, Wyatt has been dealt a really crappy hand but he continues to be such a happy and fun little guy.  I realized this past week that he has never really questioned or complained or seemed angry about the things he has experienced these past few months. He just does whatever we ask him to do and keeps on keepin' on.  He is an amazing and brave little person.  We are so lucky to have him in our lives.  

 

Great news!  Wyatt has been cleared to go home to Virginia Beach!  His biopsy came back as 100% donor cells a lot of marrow production.  Our target was 80% and he is already at 70-75%.  So all of your prayers and positive thoughts have paid off.  Wyatt is feeling great.  I am not sure how much he understands about what happened today but he at least mirroring our excitement.  He has another scheduled biopsy for Day 100.   Hopefully, things will continue to go in the right direction.

Well, Wyatt continues to move forward in this process.  He is eating, finally!  He is off his 'tpn' (iv nutrition) and he has dropped two medicines.  He now only takes 15 medicines a day!  Good thing Wyatt doesn't seem to mind taking medicine.  I am not sure how we would muscle through all of them if he wasn't such a good patient. 

His counts are holding steady again so he has less of a need for transfusions.  And as a result, we spend less time at the clinic.  He is now down to twice a week as long as eveything continues to hold out.  So, we have lots of hours in a day that we need to occupy a three year and an eleven month old.  Steve and I have to dig deep for creative energy...and physical energy.  It is freezing here most days and Wyatt cannot be around large crowds, so we are very limited with our options to pass the time.  We do try to take drives everyday which Wyatt calls our "family outings".  These drives usually revolve around Steve and I needing coffee to keep up the pace. 

We hope to find out the results of Wyatt's bone marrow biopsy on Tuesday.  The doctors are looking for two things - mostly donor cells present and a lot of cell growth.  Steve and I have taken our typical stances...he is Peter Positive and I am Debbie Downer (the truth usually lies somewhere in between.)   Of course, this is one of the few occasions that I would be happy for Steve to say a big fat I-told-you-so!   So keep your fingers crossed that the doctors see what they need to see!   Again, we wait.

 

 

Thank you for supporting our family this past year.  We have enjoyed reading all the emails.  And we are so very grateful for all of your thoughts and prayers.

We are hoping for a much less 'eventful' 2008.  And while we really like Minneapolis (it is a wonderful city), we are looking forward to getting back to Virginia Beach.

Best wishes to you and your families for a healthy and happy New Year!