Happy Un-Birthday Josiah!

Boy has this been an interesting day. I got to have my whole family up here to celebrate me getting new blood! The nurses and staff brought James and I presents and balloons, I love it! Nurse Kate gave me my IV of Marrow and had to wear a mask and special clothes. She stayed by my bed for over an hour just watching me and taking my blood pressure. I ended up having to have blood pressure medicine today but the Dr. said that is normal. My blood pressure got up to 208 over 110, Yikes! But God is in control and gave the nurse wisdom to help me. James got to come in and see me earlier but then had to go to his room and rest. His voice is pretty hoarse and he said his back was hurting pretty bad. After his nap ( and some Tylenol) he felt better. Sara, Hannah and Leah all came in too and we had fun. It took a long time to get everything done and get me where I was doing well but we wanted to tell you thank you for your prayers. Right now I am a very pink color all over. So far that is the only thing that hasn't gotten better. It doesn't hurt and I am not hot, I am just turning like Elmo. :)
I want to thank my big brother for giving me his blood to save my life, I love him. He is my hero! We also thank the Lord for His mercy is everlasting! Pray that my night is good and that everyone can get some sleep. Love to all and we will talk to ya tomorrow.

P.s. we haven't had an update from Torie's grandma, but the nurse said she thought Torie was doing well. Please keep her in your prayers as well. Thank you all for your notes on our walls, it's always fun to read them!

#2 BMT day update

This is the day the Lord has made, we will rejoice and be glad in it! Thank you for your prayers!! Over night my blood pressure was running high so they were going to start (yet another) blood pressure med. When I woke up this morning my pressure is down (for now ) and my temp is back to 97.8 with oxygen at 99!!! I am up feeling good and even eating a bite or two. Everything is on Schedule.

James just got out of surgery and they said it went wonderful. Daddy will be able to go see him in a few minute and will probably stay with him till they let him go home (or visit me :). With God all things are possible... when the Dr. come back from testing James Marrow they said they couldn't believe it was twice as good as they needed it to be! Wow, if that is not God! Thank you for praying for me and Jay. We will talk back to ya'll later! God bless

BMT Day update

(Note from mom)
Picture is right before he went for surgery at 5:30am

Good morning everyone,
The day is here, I can't believe we have been here over a month already. Last night Josiah had his 19th ERT, they had to start it in the PM because he is on so many medicines right now. He did seem to have a little reaction last night that worried us a little but God is so good. We got some extra prayer and his night went pretty good. He even slept through most Vital (wow!).

James went to the hospital for his surgery this morning at 5:30 and he will be here all day. He was a little hesitant because yesterday when drawing blood they poked him four times. As I mentioned on FB, he was so brave! He sat there and said"don't hurt me gen (again)", they offered him a toy and he said he wanted to give it back if he could leave! But that is over and now he is back... They will put him to sleep and make small cuts on his lower back, one over each of his back hip bones. They will stick a needle into the cuts all the way through the bone into the spongy part which is the marrow. How much they take out will depends on how rich his marrow is this morning. They actually send it off and have it tested and cleaned (sometimes even changed to an extent) and brought back for Josiah. Another factor for how much marrow they take depends on how much Josiah weighs and needs. Being as Si is bigger than James, James will probably need a blood transfusion. Jim is the same blood type as James so he gave some a week ago to have on hand for today.

The actual BMT for Josiah won't be that eventful. They actually just bring in a bag of 'blood' and hook it to one of his IV's. Then its just a process of waiting... they say that our journey will get worse before it gets better. We just keep praying that God will intervene and all will go just fine. We pray for no Graph vs. host disease. And all of James blood will over take Josiah's. Isn't it interesting that on his Un-birthday we want the Donor to give his life blood and put it into the recipient and completely take over. Us Christian believe that on our Re-Birthday, Christ gave His life blood and completely takes over us. Wow, God is really giving us a live example.

Right now he is on special medicine for a Virus called CMV, please pray there is no problem with that ( potentially really bad). And medicine for anti rejection of the Marrow for later (along with lots of others). He is getting Vitals every 15min. right now to watch him closely and his fever is 99.8. I will post updates throughout the day ... thank you all for supporting us and praying. Please continue!!

Lots of Love,
Rachael

P.s. please keep Torie in your prayers as well, her BMT is today too!! Also a little girl we have met here named Gracie is have a major surgery as well. She has Down Syndrome and her family needs much prayer for a very complicated spinal surgery. You can check her website through Caring Bridge, GracieLarson. Thank you!

Yeah! Last day of Chemo!

Hello from Silly Si,

Another good day has come and gone and now it's my last day of Chemo! I did need to get some extra blood in me last night but they watched me extra close and I had no bad reaction. This morning I am a bouncy boy who just wants to play and explore. Mommy didn't get the picture of me play underneath the hospital bed ( that was fun with all my cords hooked to me ;).

But she did get some of me playing with my friend (the OT). They are always saying how energetic I am. Mommy and Daddy are just thanking the Lord because that is the only reason I am doing as good as I am. I continue to amaze the Doctors.

Only one more day till my Bone Marrow Transplant, please pray that all of James marrow will fill my body and my body will accept it! (No Graph vs host disease!) Also, please pray for strength for James. This process will take a lot out of him and he needs your prayers as well. We thank the Lord that He gave me an older twin brother to be an exact match and to help save my life. I love him and miss him so much!

Thank you for your prayers and love. We love getting mail, here both James and I are opening a card that we got from Grandpa and Grandma Linda. Several people have sent us some cards and we want to say Thank you!

Love to all!

P.s. Note from mom on the upcoming schedule:

Wednesday: Dad being at the hospital with just ERT for Josiah and a day of rest from Chemo. James goes with mom for a pre-op fun play to learn about what will happen and then a physical and blood work all starting at 12:30. Home for James and mommy after hospital workup. Thursday: Dad goes to hospital in A.m.(exact time not known yet) with James for surgery and will stay in the hospital all day, hopefully discharged in the evening. Mom will be with Josiah and the exact time of the BMT will be posted when we know (prob sometime Thursday after lunch). Lord willing James will be doing well enough to come visit for Josiah's Unbirthday, along with all the girls. If anyone has questions please don't hesitate to e-mail me at: jimandrachael10@yahoo.com Thank you!

-3 (yeah)

Hello,
Hope everyone out there is doing well. I am doing great!! I am still getting my Chemo every 6 hours and the Dr. came in this morning and said that I couldn't be doing any better! I don't have to get sick for this procedure to work and the Dr.'s are always surprised at how I am always playing and have a smile for everyone. I am still not that hungry but I still have my nutrition IV in and that gives me all the calories I need to stay energized. Mommy tries to get me to eat a little something for when I have my oral medicine and I always talk her into a bite or two of Ice cream. :) We trust we will bring you another good report tomorrow! Just one more day of Chemo, and a day of rest then my BMT on Thursday. Thank you all for your prayers! God sure has blessed and we pray that the rest of my journey goes as smooth as it has so far! Love to all from snowy Minnesota.
Mom says sorry for no pictures today, maybe tomorrow.

-5 and Si says HI!

Good morning to all!! We had to share this video with you of our encouraging moments! I didn't feel really well this morning. The nurse started me on TPN ( the nutrition IV) last night because I wouldn't eat much, but I can still handle a bag of baked chips! I love them, it's the only thing that I will even try right now. This morning at 4:00am they gave me my first Busulfan ( another chemo). It went pretty good till I woke up and I felt yucky! I even choked and threw up all my oral medicine. I couldn't get down the medicine that keeps me from having seizures, so please pray. The doctors are ordering my medicine to go into my IV (I'll still have to take 1 in my mouth, yuck), I won't get those till 12:00. At 11:00am I got my 2nd dose of Busulfan ( I get this every 6 hours for 4 days), and I was able to eat a little chips and now have some energy. The Lord is so good! I had to show everyone on my video how much better I feel right now. Thank you all for your prayers!

-6 days (& counting)

Hello to all,

I have had my fourth day of Chemo (last day of Cytoxin) and still doing well. Yesterday after my 3rd chemo I got a little sick and lost everything I had eaten for breakfast. I am not too hungry since then and shake my head at food. I did eat a little for supper last night and a 1/2 of a banana for breakfast but nothing else. The Dr. said that if I continue to not eat I will need a nutrition IV put in. I need to keep my calories up so I continue to have strength and energy. So far I still have some energy and love to get out of bed and play ball or color. I love crayons and coloring. I love to dump the crayons and put them back into the box almost as much as actually coloring. :)

I also start a new medicine (among the many) tonight to help keep away seizures (Keppra). The next four days of Chemo (Busulfan)is different then the one I have had the last 4 days. The Dr. told mommy that the new medicine is known to cause seizures. So please pray that my body continues to work with the medicine and I can get better.

I am a little more tired and pale but I am still SI who loves to watch shows, play and clap. Mommy and Daddy are still really encouraged at how well I am doing so far and continue to pray for strength and energy for everyday ( for mommy and daddy as well as Si :) . Thank you for your comments, prayers and encouragement. It is really nice for Josiah and the whole family to know that ya'll are here with us. God bless ya'll!

P.s. If you want to keep up with my friend Torie please visit her blog at www.toriebrady.blogspot.com