Ryan,
What is happening? Mommy is so sad! Today at 3:30 you and I were talking about the day you were born and then the phone rang. Guess who ? Dr. Gassas!
He called to say that your cells have increased to 14! Wow they doubled in a week. Not the news we wanted to hear.
Plans for Easter have since changed. Ally will be going into hospital tomorrow for her first shot of GCSF to increase her white cells. Second shot will be Saturday night and third shot Sunday.
Monday morning she goes in for the insertion of the tube that will harvest her white cells. She will be put under and the remainder of Monday will be a rest day.
Tuesday they will harvest her cells and another harvest on Wednesday. She should be home by Thursday at the latest.
Gramma and Grandad are coming back tomorrow due to the news. They will help Auntie Nicole take care of you while we are taking care of Ally for the next few days.
Mommy has asked Dr. Gassas if this will hurt Ally in any way. He said that she has to have an easy going weekend. No rough play as her spleen will be full of blood due to the inceased cells.
I have asked what happens after DLI, he said that he wants to get enough for 2 DLI's to take place. So one will be done ASAP and then if it does not work again in about 4 weeks. He says this is an oppertunity to reverse what is happening. He also said there are no guarantees.
Mommy has read up on this procedure and I am not sure what to think as most studies show it does not keep a patient in remission. If that is the case I am hoping that it will buy us enough time to get you to another transplant.
I also asked abuot should DLI not work! His response was lets get to that bridge when we have to. Then a bit of a pause and then he said if it works out timming wise, we may be able to do another transplant.
Mommy is devistated! All we want is for you to get through this and be OK.
I will put my positive spin on this one and say these are bumps in the road and the end result will be great. We still have not got the 3rd piece of good news. So we wait.
You have been asking alot about God lately! You questions was what is God's job? So we have told you that he is the man that takes care of us all. You have asked if we are going to Die? We have told you that we will all die when we are very old. You seem to be ok with these answers.
You were also watching Backyardigins this morning and you said " Mommy Tasha is quitting "
You said mommy we never quit. We never give up and we alway fight. You got it baby.
Mommy is having a hard time with this one. How do I keep it together for you! How do I not let you see what my fears are everyday! I know you see it when I cry. You still wipe my tears and I still tell you they are tears because I love you so much.
Love you baby.
Mommy.
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Sue,
ReplyDeleteOMG I'm still in shock from your phone call. Its so true what can change in a few hours. Earlier today you were saying how good Ryan looks and that you would never know he is sick. I'm devastated too. My heart goes out to you and your family. I wish there was something more I could do for you. Stay strong, keep positive and have hope. I love you guys.
xoxoxo
Tina
Hey Ryan: Sometimes when things are broken it takes a few attempts to get it working again properly. Your doctors, nurses, mom, dad and Ally are all working to get it right - the body is not that easy to fix sometimes. Strength and patience is all you need bring - they will look after the rest. Look after your sister this weekend. Please give your mom, dad and sister big hugs for me.
ReplyDeleteI'm glad you can't see me, but if you could I would say "my tears are because I love you guys too". We are sharing your pain and wish you all the strength to continue your very bumpy road to perfect health. xoxoxoxoxo
ReplyDeleteSue & Dave,try not to let this discourage you, keep having faith & strentgh and know that there is HOPE and that Ryan will get better!. Ryan take care of Ally and yourself and try to keep smiling. You are a very special little boy and have touched our hearts in a big way. We are wishing and praying for you to make a healthy recovery lil guy.
ReplyDeleteMike & Shannon
Dear Sue,
ReplyDeleteHang in! Stay positive! Your little boy is in very good hands. I guess we'll all have to learn to accept the good news sprinkled with the not so good. I pray that you and Dave will find the strenght to persist through it all until Ryan gets well. Take care of yourselves as your own health must stay strong. You have many people who are wallking this road with you.
Sue, you have all come so far in a short period of time. Stay the course, you are all strong fighters and there are a lot of people praying very hard for you right now.
ReplyDeleteThanks to you all for your wonderful and kind words. We are so lucky to have you all in our corner cheering us on every step of the way.
ReplyDelete