Thank you for ALL the support!!!

Just wanted to give everyone an update on the blood drive and on Finn. The blood drive was a huge success and we reached our goal of 50 pints! In total 52 pints were given at the Red Cross of GSO and 7 pints where given by friends and family elsewhere. We can't say thank you enough for everyone's support in helping us get to our goal and providing the much need blood donations to area hospitals.

We found out first hand yesterday just how precious donations are, when we went to UNC and Finn needed another transfusion. The hospital was having a shortage of blood because of the previous holiday, but they did eventually find a match for Finn. Holidays cause problems for blood banks because less people donate and more accidents occur. Less supply, more demand.

As I mentioned, Finn did end up getting a transfusion yesterday, but there were two big positives to takeaway from his levels (HGB 6.2, retics 7). First, this was the longest that Finn has been able to go between transfusions, 6 weeks!!! Second, his retics (or immature blood cells) had spiked, meaning that his body is trying to compensate for the low HGB. Hopefully, it will continue to do this and he will be able to find an equilibrium that can sustain him for longer periods of time between transfusions.

Craig and I just want to thank everyone again for the show of support and encouragement that we received last week. It truly was a huge part of what our family was thankful for on Thanksgiving!

Ps. now that the ARC has your number, they ain't never going to leave you alone! So we look forward to hearing from you on the many donations to come in the future!

Thanks!
Beau and Craig

No transfusion last Friday!

Finn's HGB level was a 7.5 and his retics were over 4, which meant we were able to postpone the transfusion to this Wednesday! Still cautiously optimistic, but this will be the logest he has beeen able to go between transfusions!

The blood drive starts today and thanks for the overwhelming show of support! If you have any questions or problems scheduling an appointment, please feel free to send me or Craig and email. Looking forward to reaching our goal of 50 pints!

Beau

11/15 Update

Not much to update. We are heading to UNC tomorrow and are expecting to have a transfusion. We will keep everyone posted about what happens there.

In the meantime, a special THANK YOU to all the friends and family that have supported the upcoming blood drive next week in Finn's honor, especially Greensboro Day School and First Presbyterian Church for their efforts to get the word out! Y'all are the best!

Blood Drive Information

Below is a bulletin for the honorary blood drive being held the week of Thanksgiving, hope you can help us reach our goal of 50 pints! I also just posted the most recent update as well.Thanks!

Update 11/7

Some more cautiously good news! Finn got to add another week without a transfusion...again! Today Craig and Pam took him to UNC for his three week appointment post transfusion and for the second time in a row, his HGB levels (8.4) were high enough that no transfusion was necessary! This is encouraging because when he started out it was every two weeks, then every three weeks, now we are moving to four. But as I mentioned this is all very cautiously optimistic...but we'll take it!

I am going to add another post in a minute with the bulletin for the honorary Blood Drive that will be held the week of Thanksgiving at the American Red Cross on Yanceyville Street. Our goal is to help raise 50 pints of blood for the ARC in honor of Finn. We have learned so quickly the importance of blood donations and the great need that is out there! We hope that if you live in Greensboro you can make an appointment and help us make our goal!

Note: (The Blood Drive is for the ARC in general and is in honor of Finn NOT to raise blood for him. No vampires are allowed to participate as well).

Thanks!
Beau and Craig

10/17 Update

We went to UNC on Wednesday and Finn's levels had dropped to a HGB level of 7.4 so Dr. Gold thought it would be best to go ahead with a transfusion. As you can see, it went well. Nothing else really to report other than Finn is 50% in both Height and Weight, so we know he is at least growing well. Craig is going out of town next week because her dad is getting an award for saving the world, so it should be interesting to have all three alone! I may need a transfusion afterwards as well! Wish me luck.

Beau and Craig

Good news for once!

We are fortunate that last week went very well! We arrived at UNC with the full expectation that Finn would require a transfusion. His body had been on a pretty regular pace of 3 weeks in which he was breaking apart his red blood cells to a point where his hemoglobin levels (6-7) would require a transfusion. We figured his levels would be somewhere in that range. Miraculously they were at 8.6! So no transfusion and we got to go home early. What does that mean?...we have no idea. We are scheduled to go back tomorrow and we will see where he is 4 weeks post transfusion. His color has been a little off the past few days, so if I had to guess, we would need to get a transfusion tomorrow. It is still encouraging to get some good news for once! We will know a whole lot more when we see tomorrows levels. Hopefully a miracle is taking place and his body is starting to correct itself. That's the small chance that we have been praying for all along. As my brother-in-law Dr. Michael always says, "sick children look sick, and Finn just does not look sick!". As you can see from the picture in the post, which was generously taken and given to us by Flashes of Hope at UNC. I promise I will post the results of tomorrow in a timely fashion, sorry for keeping people waiting on updates. Speaking of which here are two more: even though we didn't have the transfusion, we did go ahead with the tubes in his ears last Friday. The procedure went great and Dr. Byers told Craig that a bunch of fluid was released. Also the dates for the honorary Give Thanks for Finn Blood Drive are Nov. 19-20th (Mon & Tues of Thanksgiving). We will send out an email and will post on Facebook the directions on how Greensboro friends and family can participate. As always, thanks for everyone's continued prayers and support!

B&C

Lots going on next week

We had our first trip to Moses Cone last week with a fever and it went very smoothly. Finn had a double ear infection which was causing the fever, but children with a central line have to go to the hospital to have a blood culture done and to get a dose of IV antibiotics. This is to make sure there is not an infection in the line itself, because it would spread to his heart and then throughout the body. Dr. Melissa had called ahead and we were in and out without having to wait around. ER's aren't the most sterile places in the world and you don't want to pick up something worse than what you had when you came in!

Because of the ear infections and the past history with Adelaide and Fletcher (both have tubes), we have decided to go ahead and have tubes put in Finn's ears. That way it will hopefully cut down on the possible future visits to the ER. We were all ready set to have a transfusion in Chapel Hill this Wednesday, so Dr. Byers thought it would be best to do his ears on Friday when his hemoglobin is high. The procedure has to be done at Cone because of his line, but other than that should be pretty standard.

The big kids are looking forward to going Green and Gold Day tomorrow at GDS. Adelaide and I baked a cake for the bake sale, but unfortunately it was eaten before it could get delivered. Things are as normal as they can be with three children that have green stuff flowing from their noses.

We are shooting for having the honorary blood drive the Mon/Tues before Thanksgiving but will keep everyone posted on the details and on next week as it unfolds. Thanks for all the thoughts and prayers!

B&C

Finn's Baptism

On a non-medical related note, Finn was baptized yesterday and we are all so blessed to have him in our family! The baptism was at First Presbyterian here in Greensboro, the same church where Craig and I were married, as well as where Adelaide and Fletcher were baptized. There hasn't been many dull moments since that Saturday in June of 2006... and I can't help but think about just how lucky the kids and I are to have Craig! I went back and found some of the old pictures, its amazing how fast time goes by!

Adleaide, Fletcher & Finn Sept 23, 2012

Adelaide September 21, 2008

Fletcher September 20, 2010

Adelaide & Fletcher

Update from Tuesday 9/18

I am so sorry this took so long, but here it is...

We did go to UNC on Tuesday and found out a few things. First, big ol' hoss Finn now weighs 17.2 lbs.! All the nurses can't believe how big he has gotten since June and he has them all wrapped around his tiny finger. You can already tell that he is going to take after his dad and be quite the ladies man!

His levels had changed to hemoglobin 7.2, ritics 3.6 and bilirubin 2.2 so Dr. Gold decided it would be best to give him another transfusion. It really is so much easier now that the broviac is in and it makes a world of difference! The only problem is going to be keeping him healthy through flu season with two siblings in the house. We also did get the report back from Mayo and unfortunately it did not tell us much. It showed that he has an acute enzyme deficiency in his RBC's caused by low levels of G6PD. But Dr. Gold is not certain that this is THE or SOLE cause of what's going on in his body.

Finn's condition is really quite a mystery for everyone. If you look at him, he is the healthiest, happiest baby in the world. He is growing and advancing just like nothing is wrong, but underneath there is something that is causing his body to break apart his cells. We asked Dr. Gold the big question that is on everyone's mind...where do we go from here? Unfortunately there is no answer other than to keep having transfusions. At the age of five, children with blood disorders can have their spleens removed. You can remove it earlier, but the spleen plays a big part of your immune system during early development. This doesn't mean a guaranteed cure, but the spleen is the part of your body that breaks apart your blood cells. There is still a chance that is body will start to slow down the hemolysis or stop it all together. That's mainly because we still don't know whats causing it or that there is no obvious answer after all the tests. If you are praying for anything, pray for this to happen or for the doctors to find a reason why.

In the meantime, I have been in contact with the Red Cross here in Greensboro and we are going to host a blood drive in Finn's honor this Fall. I hate to think about the situation we would be in if it weren't for people constantly giving blood donations. The blood collected won't be for Finn's use, but for the Red Cross in general and will hopefully raise awareness of their need as well.. I will let everyone know the details when they are finalized and hope that people can participate!

Sorry for the long post! Thanks for everything!

Beau and Craig

Not much has changed

As of today, there is still no word back from the Mayo clinc and not much has changed...meaning it still appears Finn's blood cells are breaking down at the same rate as before. Tamara, our wonderful nurse that comes once  a week for home care, took labs on Tuesday. They showed that his Hemoglobin has dropped to 7.8, his bilirubin increased to 1.5 and his reticulocyte level increased to 3.5. I will explain the numbers for those who haven't had the biology lesson yet.

Hemoglobin is the part of a red blood cell that carries oxygen through our body. A normal range for a baby is 9-15. When he received his first transfusion back in June he was at 4. A trend downward means the cells are dying off faster than they are being produced (hemolytic anemia).

The bilirubin is what is left over after a red blood cell is destroyed, I call it the "ash". A normal level for him would be .5 to 1. When he was born it went to 21 in the NICU. If the bilirubin is trending upward it confirms that hemolysis is occurring.

Your reticulocytes are your immature blood cells that are produced in your bone marrow. The bone marrow test came back normal, so we know that he is procuing retics the way he should be. The crazy thing about our body is that it can sense when something isn't right and will try to compensate for it. Therefore, a normal level for him would be 1-2.5, but his body can tell that it doesn't have enough mature red blood cells so it starts producing a whole lot of immature ones. At his first transfusion he was over 6.

So after all that...we are going to UNC on Tuesday and he will most likely get another transfusion to get his levels temporarily back to normal. The hope of his body jump starting or eventually growing out of this is still there, but it will be more clear as to what we are dealing with when we get the results back from Mayo. Until then, all we can do is treat his symptoms. Thanks for everyone's prayers and support!

Beau & Craig

Still waiting...

Not much to report, but wanted to post an update for everyone. We got to take the week off from going to Chapel Hill b/c he just had a transfusion last week and his levels should still be stable. Dr. Gold just emailed us and he has not received any reports back from the Mayo Clinic. Since they usually do all tests in house (at UNC), he is unsure of the time frame. He did examine the bone marrow results and everything looked good. So that means he does have the capability of producing red blood cells, but his body is destroying them for some reason. Thanks for everyone's thoughts and prayers and show of support! We are so fortunate to have such great friends and family! Will post more when we know more...

Beau and Craig

Bone Marrow Test

Finn had his bone marrow test this morning and the procedure went well! We won't get the results back until Tuesday, but Dr. Gold mainly did it to rule out any abnormalities with in the bone marrow. He also ran some preliminary tests on the blood that was drawn on Tuesday and he did see a few things that stuck out. He thinks we should know a lot more when the Mayo results come back.

Today is a sedation clinc at Pediatric HemOnc and there are a lot of very couragous children here fighting cancer. I can't stress enough how important the care is that these nurses and doctors are giving these children. One family is here with their second child to have cancer. If you are ever looking for a cause to support...this is it and there are so many ways to give.

We will be heading back to Greensboro shorty to enjoy the weekend and hopefully a State win! Thanks again for all the support and prayers!

Beau and Craig

From Tuesday 8/28:

Just wanted to update everyone on how the day is going...We got here this morning and Finn was supposed to see anesthesia at 7am, but they had an emergency come up and had to reschedule the bone marrow test to 9:30am. Since he had not eaten since 12am, we decided to reschedule the test for Friday. We went ahead with trying to get the panel for the Mayo Clinic and after trying for 3 months we finally got enough blood to send off!!! Finn is now having a transfusion and we should be coming home in a few hours. Thanks for everyones continued prayers and support! It will be awhile before we hear back from Mayo, but hopefully today will prove to have us closer to a diagnosis.

Xoxo
Craig and Beau

Welcome to Finn's Blog!

Because of the tremendous amount of support from all our family and friends, we thought that a blog would be the easiest way to keep everyone up to date on Finn's progress. We can't thank everyone enough for all the emails, calls, letters, thoughts and prayers for our brave little guy! He is such a blessing and we all LOVE him so much!

Craig, Beau, Adelaide, Fletcher and Finn