Back in June Ethan saw a round of doctors at Vanderbilt that were all apart of his team of docs to get him through whatever it is that is going on in Ethan's body. All the docs praised our current primary doctor, Dr. Graham, and stated that they did not have any better ideas to come to a diagnosis or additional treatments that Dr. Graham has not already tried. They all ran the usually tests with the assumption that nothing new would show. A few days after those visits the Hematology doctor gave me a call that Ethan's platelets did not come back normal and that he thinks Ethan may have a possible blood disorder. He explained that platelets are what allow your blood to clot and that this could be the reason why Ethan still struggles with pulmonary hemorrhage (bleeding into his lungs). He also explain that platelet disorders are treatable and that sent our world into pure optimistic bliss; especially since the month prior we were informed that Ethan would not need anymore chemo! So more blood work that to be done to determine if Ethan does indeed have this blood disorder and it is a test that is only done a few times a month and we scheduled it for late July, over a month away.
July 24th came, the kids and I loaded up super early for what I was hoping to be the most important blood test of Ethan's medical history at this point in his adventure to health. My anxiety was at an all time high as I prayed this would be the answer and last piece to the Ethan health mystery puzzle. The blood draw was super quick and 11 tubes of blood later we were out of there. I was told by the nurse that it will be 4 to 14 days before we have any results.... so the waiting began. Just knowing it was in the works brought an amazing amount of piece to our lives.
Exactly 4 days later, July 27th, the Doctor called.... unfortunately not with the news we were hoping for. He said "Hello Ethan's Mom. We got Ethan's test results back and I am sorry to inform you that Ethan does not have a blood disorder." Now his apologetic delivery of these results may seem odd to most but it the doctor and I had a mutual understanding of what a positive result would have meant for Ethan. Immediately after hanging up the phone my heart was overwhelmed with sadness and frustration. Another solution was so close and in a 2 minute phone call was gone.
So there is no answer right now to Ethan's pulmonary hemorrhage and today I am unsure of the next steps until we see Dr. G again in a few weeks. We do know and continue to trust in God and that he has a plan for Ethan. It is also so important for all of us to remember that Ethan is still doing really really good and we are still celebrating no more chemo!
Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen.
Monday, July 30, 2012
Friday, July 6, 2012
Ethan Update!
I know this is what you all really want!
How is our Mr. Ethan doing?.... He is doing so awesome. The past few months have been full of great news. As you know Ethan has been going through Chemo (rituximab) treatments for the past 3 years. After 5 rounds of chemo it seems to have done what they wanted it to! His immune system has built back up healthy and Ethan's Rheum declared no more chemo for our little guy. Amen! As we were still in the glory of celebrating that huge success in Ethan's health we learned that they think they know how he continues to have a bleed into his lungs and if it is what they think it is they can fix it. They think Ethan has a platelet disorder. Now this is not why he bleeds in his lungs in the first place, the original bleed was caused by the bigger issue that they think the resolved with the chemo. A platelet disorder is where his blood is not clotting properly or quickly enough. So it isn't that Ethan is bleeding a lot into his lungs he is just bleeding for an extended period of time which is causing the issue. Ethan has more testing on July 24th that will confirm if he does have the platelet disorder and then he will begin treatment. Treatment is most likely regular infusions but that is way better then bleeding into his lungs, which a long term bleed in your lungs causes your lungs to stop functioning over time. Pretty sure we all know how important our lungs are.
So right now Ethan continues his meds, continues his IVIG infusions every 4 weeks, and is still followed closely by his wonderful docs at Vandy. He is not in the clear so please continue to pray for our little guy. If he continues to stay on this positive track then they will start decreasing his meds in the next few months.
There will probably never be a diagnosis for Ethan to explain what all has happened to him but we will take treatment over diagnosis any day and that is what we got. It has been determined that Ethan has numerous things going on that are all unrelated but can cause the perfect storm in his little body. We do know Ethan has some sort of auto-immune disease, he has Alports Syndrome, and possible platelet disorder. Again, a diagnosis doesn't matter as long as the treatments are working. Oh, and I do not want to forget to mention that although this has been a long journey I really feel the treatments and findings have all been happening in God's perfect plan. Everything has been found in the most beneficial order to help Ethan. They fixed the underlying big issue first and are not cleaning up the mess it left behind. We are so grateful! Ethan is a Super Star!
Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen.
How is our Mr. Ethan doing?.... He is doing so awesome. The past few months have been full of great news. As you know Ethan has been going through Chemo (rituximab) treatments for the past 3 years. After 5 rounds of chemo it seems to have done what they wanted it to! His immune system has built back up healthy and Ethan's Rheum declared no more chemo for our little guy. Amen! As we were still in the glory of celebrating that huge success in Ethan's health we learned that they think they know how he continues to have a bleed into his lungs and if it is what they think it is they can fix it. They think Ethan has a platelet disorder. Now this is not why he bleeds in his lungs in the first place, the original bleed was caused by the bigger issue that they think the resolved with the chemo. A platelet disorder is where his blood is not clotting properly or quickly enough. So it isn't that Ethan is bleeding a lot into his lungs he is just bleeding for an extended period of time which is causing the issue. Ethan has more testing on July 24th that will confirm if he does have the platelet disorder and then he will begin treatment. Treatment is most likely regular infusions but that is way better then bleeding into his lungs, which a long term bleed in your lungs causes your lungs to stop functioning over time. Pretty sure we all know how important our lungs are.
So right now Ethan continues his meds, continues his IVIG infusions every 4 weeks, and is still followed closely by his wonderful docs at Vandy. He is not in the clear so please continue to pray for our little guy. If he continues to stay on this positive track then they will start decreasing his meds in the next few months.
There will probably never be a diagnosis for Ethan to explain what all has happened to him but we will take treatment over diagnosis any day and that is what we got. It has been determined that Ethan has numerous things going on that are all unrelated but can cause the perfect storm in his little body. We do know Ethan has some sort of auto-immune disease, he has Alports Syndrome, and possible platelet disorder. Again, a diagnosis doesn't matter as long as the treatments are working. Oh, and I do not want to forget to mention that although this has been a long journey I really feel the treatments and findings have all been happening in God's perfect plan. Everything has been found in the most beneficial order to help Ethan. They fixed the underlying big issue first and are not cleaning up the mess it left behind. We are so grateful! Ethan is a Super Star!
Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen.
OMGoodness.... Cannot believed I have not blogged since March
Tiss tiss Alison Lynn! So sorry there have been no updates. The thing is we have great news to share on Ethan and have been having a fun summer! Let me update you.....
Dad does this a lot in the evening...
Ethan has sleepovers now...
We had family day at Daddy's airfield. It was really cool to see the guys fly in formation.
We went to Cozumel, Mexico and had a wonderful time just the two of us! We drank and ate far too much. We got scuba certified. Mike sang LaBamba with the locals. I read a whole book and loved it so much.
We celebrated Easter at our MOPS and Preschool Church home. Ethan got a surprise from his Papa who came and spent the day with us. We love his visits!
We adopted Jack! It has been such a joy to have a dog back in our home. He is much much bigger now.
Grandpa Mike came for a visit and helped Daddy build the play set for the boys and put in the pool. We were also lucky enough to celebrate his Birthday with him. We love Grandpa Mike!
We did the March of Dimes March for Babies with our dear friend Lauren Lea. We walked in memory of her sweet baby girl, Abigail Jane. It was a huge honor to share this day with Lauren Lea.
We went Strawberry picking!
I cut all my hair off, feels good and I am loving it. I donated all 13" to Pantene's Beautiful Lengths.
Purple Party!!!!! I hosted a beautiful party to celebrate my friend Lauren Lea's 30th Birthday. It was called Purple-Pa-Looza and all of her lovely friends were purple. It was absolutely stunning.
The boys had their last day of school. Next year Ethan will be in Pre-K, seriously when did this happen?!?!?!?!? Evan will be in the 1s class again. Last year he started early so he will be with kids his age this year.
I was baptized! (will blog more about this in another post). I do have to say that all 4 of these incredible women are such an inspiration to me!
Ethan went to Soccer Camp! He loved it so much we have him signed up for Clarksville Fusion to start up in the fall. It is a competitive soccer league here in Clarksville.
My sweet friend Stephanie, who we know from our time at Ft. Rucker, came to visit with her two kiddos, Cole & Cayleigh.
I went on a quick business trip to SL and got to see all my side of our family. Miss my sister and Mom so much!
I then went to the APSCU (private university) convention in Vegas. A good friend and coworker Ashley was also there, I saw CCR and George W. Kristina flew in for the last night. We have a great time!
WHEW! I think that does it from March through June. I would like to say I will never get this far behind again but that would be a lie.
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