Tuesday, July 31, 2012

Day +76 -

I am so sorry that I have not updated sooner but I was so tired of updating the blog with bad news and didn't want to be Debbie Downer so was waiting for something good to write about.  The good news is that we are at a steady holding pattern.  Connor has been on and off G-csf a couple of times for 5 day stretches and his numbers went sky high (WBC=11,000) but as soon as we took him off G-csf it dropped down to 1,000.  It is much better than the 300 range that he was at when we were discharged and so he is no longer on low bacteria diet and we have been enjoying fresh berries and cherries and it is just so nice to have him enjoy food.  Connor continues to need blood and platelets on a regular basis so his PICC line will stay in and we are still unsure about school in the next few weeks.  We are praying that he will be able to start with his classmates.

I hope everyone is having a happy summer!
Thank you so much for all the love and support!

Thursday, July 5, 2012

July 5-Counts continue to drop

We went for more labwork and his counts have dropped to very low levels again.  We stopped administering G-csf on Sunday and in 5 days time his numbers have dropped dramatically. He needed another blood transfusion today and will most likely need platelets on Tues.  The doctors have decided to continue G-csf again until our next appointment and then based on those numbers will need to determine if we will need a bone marrow biopsy to see what is truly going on in there.  They all seem a bit concerned that his body is not able to sustain production of his immune system but at the same time keep encouraging us that his counts are not at 0, close to it, and that there is some production- but who knows if it is due to all the blood and platelets that he gets on a weekly basis now?  It is difficult to stay optimistic especially since Connor is only the 2nd patient undergoing RIC at Children's whose bmt failed so they just don't have a lot of data for us to review.  Can you believe he is only the 2nd child??? SO FRUSTRATING!!! Pleaes don't get me wrong, we accept what has happened, what choice do we have afterall, and we generally have very good days BUT I do have these moments where I just look to the universe and say UGHHHHH!!!

What is really scary is the decision that we have to make about a second transplant. I ran into a mother of a 12 year old son who is suffering from acute GVHD on his skin.  I have read about that being a possibility but until you talk to someone you don't really understand what GVHD of the skin means...she described it as the entire skin suffered from burns and her son is in excruciating pain and so much of his skin peels off his body that she has to clean the floor of his room at least 3 times a day.  He underwent full myloblative bmt- the preconditioning treatment that Connor will have to endure if or when  he has to do this again.  How do we make this choice and when?  We are still seeking guidance on all of this and trying to review all of our bmt research again but for now we still need to find another donor!  Please encourage everyone to register- most of them will never be called to donate and a lucky few may have the opportunity to save a life!

Connor is still doing well, we are keeping occupied by re-decorating his room and making it everything Star Wars! And he finally got a big boy desk and takes so much pride in keeping it organized and lining things up. I actually got him to let go of a few of his toys from when he was 2 or 3 so I am thrilled!    We are slowly getting into some sort of schedule but some days he is just really tired. 

Thank you all for your prayers for our family and for Andrew's family.  God has heard your prayers and our friend Nancy is out of intensive care, she still has a long road ahead of her but she is off of most of her machines and we are so grateful!

Have a great weekend!

Monday, July 2, 2012

July 2-

The past few days have been another difficult one. The clouds that have been hanging over us continues.  It is with a broken heart that I write that our friend, Andrew, has passed and went to be with the Lord on Saturday.  I am grief-stricken for his family but am finally at peace with the knowledge that God has greater plans than I will ever be phantom and am happy that Andrew is no longer in pain and suffering.  He is a true inspiration and his sweet smile will be missed. 

We had our weekly appointment today and it was so strange to walk the halls of Luries knowing that the Park family was not there.  Although we didn't see them often it was a great comfort to know that Joe was there and if really need, he would be a floor or two below us to offer us a strong hug and prayers.  We slowly spoke to Connor a week in advance that Andrew was getting worse but that he was fighting and we spoke to him about heaven.  We broke the news that Andrew did not make it and Connor's first concern was is Andrew's dad crying? We answered a few questions and then he went on to what he was doing.  He talks about Andrew's passing every day usually to ask one or two questions so I know that he is slowly trying to process it in his own way.  However, it was heartbreaking at the hospital today because as soon as we got to the elevator he asked if Andrew was still here.  And then he asked if Mr. Joe was at the hospital still. As I answered him, his face fell and he quietly asked "so, we'll never see Andrew again?" Too much for a child to comprehend.  And then he recollected how Andrew played video games with him at the Kohl's house and how that was the last time he saw him. Andrew made quite an impression on Connor- Andrew was in a lot of pain (ended up in the E.R. an hour later) but he took the time to play video games with Connor and he made Connor feel normal and happy to have that moment with this big teenager that he called his friend who was so brave and courageous.   Right now, Connor pictures Andrew up in heaven eating cheetos, gum and candy :) and he wanted to know if Andrew may have found a REAL Ben 10 watch in heaven.   I know that Connor will have deeper tougher questions for me later and those will be difficult to answer but I know that Andrew is at peace and I can give Connor that comfort. 

We stopped G-CSF on Saturday and within that 1 days time his count have dropped dramatically- it is quite worrisom and I just pray that we didn't do too much damage to his already weak immune system.  He continues to need blood and platelets and we are almost at the half way point and his immune system should be coming back up on its own. The doctors did another chimerism test to see if any donor cells exist- this may be our last one if they show the same results as last time. 

Please say a special prayer for the Park family as they grieve the loss of their precious son. They have given us so much encouragement the past few months and we wish that there was just something that we could do for them during this time. 

Please pray for Connor's immune system to jump start and start producing something and continue producing it independently. He is still at very high risk for all infections and although we are home, he has not been able to play with any of his friends.

Finally, please lift up our friend Nancy as she is in ICU with complications from a heart attack that she suffered 2 weeks ago.  She is a very important person in our lives and especially Connor's life, she was one of a few people he would facetime with while he was undergoing his treatment. 

Have a very safe independence day weekend and enjoy the time spent with your children.