It's Here!!!

We received a call last night from the doctor telling us that we need to be prepared to begin tomorrow with Natalie. Today the final decision was made after a very thorough meeting was held with doctors from Bone Marrow and Infectious Disease. Natalie will arrive at the hospital at 5:00 am tomorrow and will receive her first dose of chemo by 6:00 AM. Since the call yesterday, I have been so emotional. I couldn't hold back the tears after speaking with the doctor. We have planned and prepared for this moment…even being a week delayed, I still fell apart. I guess it just finally hit me…it’s here. I have been drying my eyes all day. I wasn’t expecting it to be easy… I just don’t think a mother can prepare for such an event, no matter the efforts. I had to remind myself that fear and faith cannot be together.

Automatic Updates via Email

My Dad would like me to send him an automatic email notification of any new posts on our blog. If any of you are interested in this as well, please let us know by sending a quick email to fishesformarrowwishes@gmail.com.

Thanks,

Lisy

Update: The only issue with this is that Blogger limits it to 10.  If you have a Google account, go to Google Reader, log in, click on "Add Subscription" and enter this blog address.  This will then update you every time there is a post.

How to Help!

I had posted this a few days ago, but decided to redo the post with a bit more information.  Many of you have been asking about ways to help...one way in which I have not mentioned much is the need for blood.  The girls will require between 25-50 blood transfusions during the transplant process.  The doctors are aware of the difficulty it is to match their blood, due to countless previous transfusions they have had.  They have developed many antibodies over time and cannot have the same blood twice.  They have to test several bags before finding the right one.  The quickest they have ever matched their blood is 8 hours...in fact it wasn't even a complete match, it was released upon emergency (Natalie specifically).  It will be a very tricky process.  Natalie and Alice's blood type is O+, however, regardless your blood type, we encourage all who are able to donate.  There are many children in need.  How to donate?  You can contact the United Blood Services through their website or donate through the Red Cross.  Sometimes the easiest way is to sign up for the blood drives that come through the community or through church groups.  I recently attended a conference in Salt Lake given by IDF (Immune Deficiency Foundation), in which I learned more regarding Immune Deficiencies.  A panel of doctors whom we are quite familiar with gave some lectures on the subject.  It was fascinating and educational for me.  I made some great contacts and want to share one thing I learned.  Most everyone is familiar with the newborn screening panel done at birth.  The state of Utah does not include SCIDs on the newborn screening tests.  I heard that it only costs $8.00 for this additional test.  I asked as to why the state does not include it.  I was told that it is a lack of understanding.  Something this simple perhaps can prevent others from having to endure what our children have endured.  I have included the following link if you would like to learn more regarding this subject:

http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

On Wednesday we will have more information regarding the timeline of events for the girls, as we consult with the physicians of Infectious Disease.

Lisy

More News

Today was a day we would find out more regarding Alice's donor and Natalie's chances of needing a biopsy on her lung. With all of the information to digest, I sometimes struggle to stay focused. Moreover, the long days meeting with doctors seem to blend together, and it takes an evening of getting the kids to bed and staring at the wall for an hour to organize my thoughts again.

Cleaning out my Purse

It has been a wonderful day for us to be home, we are getting a lot of cleaning done. We are beginning to feel more organized and ready for the storm ahead. I have to laugh because I was cleaning out my purse (which I do often) and I found at least 7 hospital wrist bands needing to be discarded. Rather than a mess of receipts I have a mess of hospital tags...such is our life. Years ago I would collect them for memories, well I quit doing that. We are trying to simplify our life, we would have bins of those things. Soon Tyler and I will begin posting some pictures and even videos of the girls. Hope you are all well!

Alice's turn for testing

Today wasn't too long, Alice had a 2 hour Neuropsych evaluation...she thought it was the greatest thing ever to play with blocks and toys.  Alice did fabulous, mostly due to the fact that she loves the attention and enjoys showing off.  Later she had some labs, an Echo, and EKG.  Tomorrow we have a day off...HOORAY!  Friday is the final day for Alice's tests, in which Monday she is scheduled to be admitted and have her broviac line placed.  There is a high possibility that her schedule will be somewhat delayed as well.  There are a few things we are waiting on from the donor's end.

Broviac Line today, Alice begins tomorrow

We arrived at the hospital around 3:00 PM for Natalie to received her Broviac line.  She was in good spirits today as she happily colored and made a necklaces as we waited for the doctors.  It is incredible how well things go when your child is in a good mood.  It was a good thing too as we waited for two hours before she was taken back.  The procedure took the better part of an hour to insert the line through the right side of her neck and exiting out of her chest just above her heart.  In the recovery room Natalie's head bobbed and leaned as her brain attempted to recalculate her bearings.  She was extremely hungry from having to go without food for the day.  Her first request was for a hamburger, nuggets and desert.  She expressed of discomfort in her neck and chest as well as the annoyance of not being able to scratch the inconvenient itches on her back.  I made sure I assisted in scratching those itches.
 

Natalie showed resolved today.  She has done so in the past, however today she looked a little older and more experienced and anxious to get this done.  As her eyes still revealed a bit of fear, I also noticed today that fear was starting to take a back seat to her desire to become well.  Natalie will have a break tomorrow to rest up, while Lisy and I will take Alice in for the beginning of her preparatory meetings with the doctors.
 

Tyler

Small Delay

Today's visit to the hospital was met with delay for Natalie's procedure.  At 8:30am Natalie received her scheduled CT scan of her lungs to see if they were in fact healthy enough to proceed with the process of a bone barrow transplant.  After review of the scans doctors found possible lesions on her right lower lung due to chronic infections.  Therefore, before Natalie proceeds any further, the doctors will need to run more tests to see if these legions are in fact scar tissue from previous sickness or fungi that would need to be dealt with before chemotherapy.  If it is in fact scar tissue, the doctors would then put her back on track to be admitted by the middle of next week.

Yeah, I have a blog now!

My brother-in-law Jared created this blog to make communication easier. Thank you Jared! I will now post my updates rather than email them. If you would like to know what is currently happening with Natalie and Alice, check this blog. Thanks...hope everyone is well and happy.

Email From Lisy

December 1, 2011

We made it through the week…it was truly long and exhausting. Somewhere along the way we added Alice onto the schedule, which made this week even busier. She will finish with her remaining tests next week. Alice’s donor is anxious to speed up the process. I don’t blame her; maybe she is hoping to donate before Christmas. We are so thankful for this sweet person who is giving life to Alice. We look forward to the day when we can communicate and possibly meet this person.