Email from Lisy

Nov. 26, 2011

Hello,
We hope everyone had a wonderful Thanksgiving. We enjoyed Dad’s turkey, as always! Today is Natalie’s baptism. She is super excited. Tyler has practiced with her and I have tried to help the kids practice the song that all the children will be singing for the special musical number. However, I sometimes wonder if I do more damage than good. I hope in Heaven I will have a beautiful singing voice. Wednesday we talked with Bone Marrow again. They emailed us a schedule of next week’s events. Wow, that is all I have to say. It will be a marathon of appointments. Because I want to begin blogging again for a journal record etc I am going to include next week’s schedule for our journal purposes and for those who are interested in knowing what will be happening. Eventually, I want to copy all my email updates into our blog…and then I will just email everyone the blog address so you can follow what you wish. Thanks again to everyone for all you do. This would be impossible without the love, support, generosity and faith of so many.

Tyler and Lisy

Pre-Translplant Schedules

An email from Lisy

November 19, 2011

Hello again,
First of all, this is the most I've ever been on my email, I haven't been much of an emailer until lately...mostly because I have a hard time sitting down to the computer without major interruptions from Alice or Evie. Hope you don't mind me sharing some of my thoughts. Evie was up early this morning, we have been enjoying each other, now she is sleeping again...so I thought I would just share a quick thought. I usually keep my scriptures beside the rocker chair where I nurse Evie, in hopes that I can read some while sitting there. Mostly, by the time I sit to feed her, I'm too tired to complete even a small amount of verses. I've been struggling to get very far with my reading. I'm not getting very far, very fast. I was stuck in the Book of Jacob for a long time to put it nicely. However, when it came time to make this decision regarding transplant, I so happened to be as far as Jacob 5. Most are familiar with this chapter, I have read it countless times over the years. I have always loved this chapter....as long as it is. :) But this time I understood something else. I have likened unto my own children, the Lord's vineyard of the olive trees. I love verses 17, 18, and 75. The whole engraftment process really came to life for me while reading this...I guess you could say it gave me courage to make this decision. Again, thanks to all for your love and support!

Lisy

Email From Lisy

Nov. 17, 2011

Hi Family,
Hope all is well with everyone. FYI--Natalie's baptism will be at 3:00 on the 26th. I ordered invitations and such online but realized they wouldn't arrive until just before...so in the meantime, consider this your invitation. :-)

Email From Lisy

November 12, 2011

Hello again,
On the 9th we had another bone marrow consult. The plan is to begin the process with Natalie as soon as possible, meaning about the first or second week of December. Unfortunately she will be spending Christmas in the hospital. Before hand she will need to clear many tests and have some dental work done, etc. They have to be in top health going into this process. Little Blair will be a real hero…he has stated that his blood will be Natalie’s medicine. He will be very sore after donating his marrow. Natalie will have her last day of school this next week and will not be able to return for a year. I thought maybe on occasion she could Skype with her classmates; her teacher thought that was a wonderful idea. Please if any of you would like to Skype (the cousins, etc.) it will be much appreciated. She will be admitted the first part of December and will hopefully be able to return home by the end of January. Natalie’s baptism date was scheduled for Dec. 3rd. The doctors advised us to move up the date. They felt it best to have that done a couple weeks before the whole process begins. For anyone who can make it, her new baptism date will on the 26th of November. I am trying to get the Stake to allow us to have the font in the afternoon. I will try and email an official invite. We will just have the meeting at the church with no gathering afterward. Thanks again and always to our amazing family and friends. We love you!

Lisy and Tyler

Email from Lisy

Nov. 4, 2011

Hello again,
Today Natalie and Alice went in for some routine antibody treatments. Natalie did well with the treatment. She struggled with the IV placement. It took four different pokes to finally get it. She was such a trooper. Alice on the other hand had a reaction to the treatment and became quite ill instantly. She will be spending the night to keep a close watch on her and to try again in the morning with a new dose of the drug (treatment). She also had to be poked a few times for labs, etc. We didn't have the luxury of using her PICC line for the labs because they needed it from another source. I had Natalie, Blair, Alice, and Evie with me the entire day....it began to get long. Although, with that said, Evie fussed very little and Blair was extremely patient. This was a blessing for me. Tyler came around 5:00 to stay the night with Alice so I could take the rest of the children home. Yesterday I spoke with Bone Marrow and they did say that they have located a couple of promising matches for Alice. They of course need to do further testing on the found matches, etc. This takes a bit of time. I however, would not be surprised if Natalie and Alice both end up going through the transplant process together. I'm very thankful to the people on the bone marrow registry list. I was so impressed to hear of the millions of people who are on this list. They even have to pay their own fees to be on the list and receive the initial testing. Again, thank you everyone for all your help and prayers.

Lisy

Email From Lisy

November 2, 2011

Hi Family,
Today we met with the immunology team for another consult. This meeting was very helpful for Tyler and I. The Immunology doctors have done a lot of research and work in our behalf and we consider their opinion to be heavily weighted. They have provided us with more information regarding future outcomes in proceeding with transplant or choosing not to transplant. We received good news and bad news today. The good news is that Blair is a match for Natalie. The bad news is that we do not have a sibling match for Alice. We really thought maybe Evie would be a matched or hoped anyway...she is not. Thus, our situation has changed a bit. Because Alice does not have a sibling match, they will begin searching on the registry list. This process can take a while...a few months or so. In the meantime we are highly considering beginning the process with Natalie. The timing for this will take a few weeks...each Natalie and Blair will have some extensive testing done prior to the procedure. We are not sure when all this will begin. Again we will continue to keep you posted. Thanks everyone for your support, etc.

We love You!
Tyler and Lisy