One Year Ago Today....

One year ago today Colt got his first fever. As any new parent would think, he probably is teething or he has a little cold, but only time would tell what the real story was. He got his first fever over the weekend and it started as a low grade fever. By Monday he still had a fever and Tylenol wasnt doing much to bring it down, so I decided to take him to the pedi. They examined him and just thought he probably had a viral infection, but said to call back if he continues to be lathargic. By Tuesday he was extremely lathargic and not wanting to eat...off to the pedi we went. The pedi took a blood sample and within 10 minutes it was back. The blood sample showed extremely low platelets and low counts. She told us to immediately take him to Texas Children's Hospital. The hubby and I knew something had to be majorly wrong if they are telling us to take him to TCH when there is the local hospital just a few minutes away. When we got to TCH we had to wait in the ER for about 2 hours until I decided to throw a fit and demand we be seen ASAP (his fever just kept climbing). We finally get taken back to a "room" and they try to get an IV started, but cannot find a vein. It is so hard to watch your baby scream for what seems like hours while they are holding him down and poking him anywhere they think they can find a vein. Once they get the IV started and labs drawn the ER doctor comes in and tells us that they think he could possibly have leukemia.... SAY WHAT??? Not my child! They send us off to have many scans done and they find that Colt's liver and spleen are EXTREMELY enlarged and that is probably why he always would scream when he would eat. At this point we are just in shock of what the doctors are telling us and I was just numb to everything. You dont have time to think about what is happening at this point. They get us to a room on the PICU after midnight. The next day we probably had about 30 different kinds of doctors come in and ask us questions and examine Colt. Dr. Allen and Dr. McClain who are some of the top HLH specialist in the country came in on February 2nd to talk to us about HLH. That is when I first heard that nasty word! They said the only way to tell between leukemia and HLH is to do a bone marrow aspiration, but Colt's platelets were so low that it was too dangerous to do.....did I mention there was a platelet shortage so Colt couldn't get a transfusion of platelets unless he needed a life saving procedure. BUT Dr. Allen and Dr. McClain explained that HLH and leukemia are treated the same way and the key to survival is early intervention, they were starting treatment TODAY. Colt's treatment consisted of a chemotherapy called Etoposide and high, high doses of steroids (dexamethasone). The dexamethasone is what made him get so puffy and it makes you extremely irritable and not be able to sleep (ya, just what I wanted to hear). Colt's treatment protocol would last 8 weeks and then the plan was to send him to transplant as soon as possible after the 8 weeks.
 Late in the day on February 2nd Colt got a platelet transfusion after the doctors demanded he needed platelets (I think his were 5). The operating room was full so the doctors came to his room and did the bone marrow aspiration, of course we had to leave the room. They sent his bone marrow off to several labs to be tested. On February 3, 2011, Dr. McClain and Dr. Allen came to talk to us again and let us know the preliminary results came back that he has HLH. That was very hard to swallow. They told us that it would be at least a week before we got the results from cincinatti, but he was pretty certain it was HLH. They then proceeded to tell us that the survival rate was 50%.....that sent me over the edge. How would you like someone to tell you that your child has a 50% chance at life??? They filled our heads with a bunch of medical terms that I had no clue what they were talking about. So what do you think the natural thing to do after they leave......GOOGLE. Well, that was a bad idea. I could only find horror stories and nothing positive about HLH. In just one year since Colt was diagnosed,the HLH family has really come together and only wished they would have been there when Colt was first diagnosed. HLH can be beat if it is caught early and you have doctors that are experiend with HLH.
So Colt spend about 4 weeks in the hospital and was discharged. We went to the cancer clinic at TCH once a week for outpatient treatment. We had 3 hospital stays in between March and May for HLH flares. In May 2011 we were given the wonderful news that a bone marrow donor match had been made and Colt would be admitted May 25th for his conditioning regimen for his transplant. Colt recived his first transplant on June 1, 2011. We learned at the end of June that he only had 20% donor cells and they would like him to be closer to 100% donor cells. Colt had a break in his conditioning because he had a bad reaction to campath, so the doctors thought that maybe that break in conditioning caused him to not have enough of his own cells "killed" off to make room for the donor cells. Transplant number 2 was given on July 3, 2011 (same donor). After 60 days in the hospital we got the devastating news that Colt still had only 205 donor cells and his marrow was very empty. The decision was made that we would be dischared and go home for awhile and come back in a month or so for transplant number 3. Colts labs were all stable at this point. HLH can be kept at bay with donor cells as low as 20%, but that leaves no wiggle room if he starts to lose a little bit of his engraftment. We continued to go to clinc 3 times a week and his engraftement studies were sent off weekly (he hovered around 20 to 28% donor cells). At the end of August, Colts BMT doctor made the decision to give Colt another bag of cells without the chemo. It technically wasnt a DLI because it was a full bag of cells. So we were admitted for one day for Colt to recieve another bag of cells ( we got a total of 6 bags from his donor). He had no complications and we were sent home the same evening. We go to clinic the following week and his engraftment studies are drawn....they come back 40% donor cells!!! Within about 6 weeks Colt made it to 100% donor cells :) That was the best news EVER. Colt continues to hold onto 100% donor cells. We are so thankful for his donor and we keep in touch with him often.

Who would have thought that a little fever would lead us down the path it did. I am forever grateful for all the people that have supported us and helped us through the difficult times. Our life will never be the same again, and I'm ok with that. This journey has made me a much better person, mom, and wife. Don't get me wrong, it was no means EASY, but I think god gives certain people these challenges because he knows who can handle them. I have learned what is important in life and how short life can be. I hope this year brings great things to our family and that we can get back on track to some sense of normalcy.

P.S. that was the short version of the events that have transpired over the last year. If you are an HLH parent wanting more details of colt's journey you can go to http://www.coltfuhrman.com/

Clinic Visit

We went to TCH today for Colt's clinic visit and blood work. His labs all look pretty good...they have been higher, but the nurse practicioner said one of the medications he is on (Bactrim) can cause his counts to be lower. He has been off his steroids for 3 weeks now and we have noticed that he is starting to get a rash on his head and face so we are going to try some topical cream to clear it up. If the cream doesnt work, we will have to put him back on steroids ...yuck! Steroids keep his immune system suppressed, which keeps his body from mounting an act agaisnt his donor cells and also keeps his donor cells from attacking his skin (GVHD). Colt is down to taking just one medication now- Bactrim, which he will continue to take until a year post transplant. I'm so happy he continues to take steps in the right direction! Just 6 short months ago I could have never imagined for my family to be heading in the direction toward some sense of normalcy. Since Colt was 14 weeks old we have been basically on isolation and not been able to do much except go to the hospital and have a few visitors over here and there. Although some of his isolation restrictions have been lifted, we still have to be very cautious, as it is still cold and flu season.

On another note, Colt has been walking all over the place! This is a huge developmental milestone for any one year old, but since Colt laid in a bed for 5months this is HUGE for him :) We are working on talking with him and using his words. He says mama, dada, bye, and TY TY (Uncle Tyler). I know with time he will be my little chatter box.

GO TEAM COLT!!!

Happy New Year!

As most of you already know, 2011 was not the best year for my family! I am really looking forward to 2012 and hopeful god has much better things in store for us. Colt has been busy trying to learn to walk independently and he takes a few steps by himself and then gets scared. It's amazing to think about how well he is doing considering the hell he has been through. His doctors have said he can go out in public when it's not busy out and make sure he isn't around anyone who is sick or been sick recently. His new immune system has to grow and learn to fight off germs....it's a slow process. His doctors also stopped his steroids last week, which makes me excited and nervous all at the same time. The steroids helped keep his donor cells suppressed so they won't attack his body, but it is nice that he is sleeping better now that he isn't hyped up on steroids. So we are just taking it one day at a time and enjoying the little bit of freedom we have ;)

We also booked our trip o Aruba this week! My brother Tyler and soon to be SIL are getting married there April 28, 2012. Many people have asked if we are taking Colt and the answer is yes. Colts doctors have reassured me that Aruba is "clean" enough to take colt as long as we stay at the resort and sanitize everything (which I'm an expert at). They also recommended we fly first class(oh darn haha) and that colt wear a mask on the plane. We will Also have to keep colt in the shade and wear lots of sunscreen and protective clothing. I'm anxious about taking colt out of the country but very excited too.

Today chuck and myself went to visit with dr. Witz,a fertility doctor. I had major complications when giving birth to Colt (almost bled to death) so my OB highly recommended me not to carry anymore children. Then, there is the genetic mutation that chuck and I carry. Soooo we decided that a surrogate would be our best option and then dr witz's team of lab specialist would test the embryo for HLH....they would only transfer healthy embryos. We did not get the news we wanted to hear today....insurance will NOT cover anything! This means we are looking at atleast $50,000 and that's a lot of money!!!! Colt brings so much joy to my life I cannot imagine not having a sibling for him, so we have a lot if thinking to do. Chuck and I have thought about adoption, but just aren't sure if that's right for our family. With all that being said, thank to everyone who has supported us and prayed for us this past year. I know everything will work out and 2012 is going to be a great year!