Today is a very difficult day for me. It marks 2 years since my dad passed away and I'm sitting in the hospital with Ethan while he gets his 14th chemo treatment. Not exactly the path I'd imagined I'd be on 2 years ago.
However, Ethan is doing wonderful and I am so grateful for that!! His spirits are high and we haven't had any more issues with his blood counts being low either. He is an all around happy 3 year old. I like to think that my dad is watching over him and is his guardian angle.
Last Sunday, 101 days after his craniotomy and reconstruction and 2 days after his 13th chemo treatment, Ethan ran in a 1K to support Be The Match, a national bone marrow registry. He ran almost the entire way and had a fantastic time. He is so inspirational and refuses to let anything slow him down. I had tears in my eyes as I watched him cross the finish line.
Only 3 more chemo treatments left and then we are on to maintenance!! I can finally see a light at the end of the tunnel. A big thank you to everyone for all of your continued support.
Just wanted to share a preview of some wonderful "Thank You" photos we had taken. I'm hoping to send a thank you card to everyone that has helped us during this journey.
Ethan tolerated his blood transfusion last week very well. He seems to be feeling great and I haven't received any calls from his doctors so I assume his blood levels are back in the normal range. He had lab work done again today and is such a brave boy. He doesn't even cry when they take blood anymore!!
Unfortunately our chemo vacation is coming to an end this Friday. He starts his second 6 week round of weekly treatments. He also has to go back on the prednisone. It has been nice not having to give him all the meds or go to the hospital on Fridays. We can make it through, 6 weeks and he will hopefully be on to the maintenance phase of treatment. He won't however be completely finished with chemo until January 2013. It's hard to believe that he will have been on chemo treatments for his entire third year of life.
He is doing amazingly well. He still hasn't lost any hair and isn't getting sick either. He is continuing to be my little Super Ethan.
Last week was extremely difficult but we made it through. When we got home from the hospital on Saturday, I had to start giving Ethan Neupogen shots. I had to give him them for 5 days and it was one of the hardest things I've had to do. He was so brave but I was scared to death!! The shots were supposed to keep Ethan's white blood cell count from dropping too low. However, his WBC count got extremely high and the doctors were concerned that he could have an infection.
We went back to the hospital Wednesday to have some blood tests done to see if he had an infection. Luckily, the tests came back negative for infection but his hemoglobin count was getting extremely low and we were warned that he would probably be needing a blood transfusion soon. Hemoglobin is what carries oxygen through the blood to the body and organs. Ethan's has gotten so low that he is extremely pale and gets tired very easily. By Friday his WBC count was back in the normal range and his oncologist decided to wait until today to have one more set of labs done before deciding if Ethan needed a transfusion.
We came to TGH at 7am this morning to have labs done. By the time we got back to our house, I had received a call from the doctor telling us that Ethan's hemoglobin count had dropped even lower and that we needed to head back to the hospital for the transfusion. As I type this, Ethan is receiving his blood transfusion. Blood transfusions are common for people going through chemo but this is his first one and I am a nervous wreck!!
Please keep us in your thoughts and prayers as we continue with our Histio journey!! Thank you=)
Day 6!! We get to go home today=) This morning started out scary when they told me Ethan might need a blood transfusion but thank God they retested his blood and all of his levels are normal now. We will hopefully be discharged around 12:30pm or 1pm, I can't wait to get home. This week in the hospital has been mentally and physically exhausting.
We will get a 3 week break from chemo and prednisone before we have to start again. I'm excited to get to feel normal for the next 3 weeks. Ethan will still be on his antibiotic and will need to have weekly labs drawn to check his blood levels but NO hospitals!!! Our biggest challenge when we get home will be giving Ethan his injections to help his white blood cell count return to normal. It will be very low because of the days of chemo. The nurses have been teaching me how to do it.....I've been practicing on oranges. Those poor oranges=) It's only for 5 days, and I just keep telling myself that I CAN do it!! Thank you everyone for the positive thoughts and prayers for us during our stay.
Day 5 went nice an smooth yesterday. Ethan was in a relatively good mood yesterday and can't wait to go home. He finished his last dose of chemo for this visit and is done with his eye drops and the prednisone!! He has done so well and I am so proud of him. No chemo or prednisone for 3 weeks!!!
Day 4 started off and ended great but got pretty hairy in the middle. Ethan had his MRI yesterday and was not happy about not being able to eat before it. He hasn't wanted to eat at all until of course he wasn't allowed. His MRI was scheduled at 1pm but didn't actually happen until 2pm. After he woke from the sedation, he was on the verge of a prednisone rage. It was NOT fun for me since all of his anger and frustration was being directed at me. Luckily his foul mood passed without an actual rage happening and he was in a pretty good mood for the remainder of the night.
This morning we found out that Ethan's MRI showed that everything was normal and there was no new LCH growth!! Today is his last dose of chemo and we should get to go home tomorrow.
Day 3 is proving to be difficult!! Ethan is more than over being in the hospital and we still have 3 days to go. He is feeling great and that is why he is so frustrated. He doesn't understand why he has to stay in bed for 6 hours or why he can't go home and play with his friends. Hopefully the next few days will fly by and won't be too difficult on him. He also has ZERO appetite. He seriously will not eat a thing. The doctors are even considering giving him a drug to increase his appetite if he doesn't start eating soon.
Day 2 came and went without a hitch!! Still no side effects and fingers crossed we won't see any. Our biggest issue right now is keeping Ethan entertained:) He can play in the playroom in the morning but when they start his chemo he has to stay in bed. 6 hours in bed is a long time for a 3 year old!! His doctor is thinking they'll do his MRI tomorrow or Friday. I am amazed at how well he's doing!! I was really preparing for the worst and Ethan acts like all of this is no big deal:)
We got through day 1 of our stay and Ethan is doing awesome!! He breezed through his chemo and had zero side effects so far:) I was really worried because this is a stronger drug than he usually gets. He is such a super hero!!
Yesterday fought the eye drops he has to have 4 times a day but today he is being my big brave boy and letting them do them. It's amazing how explaining why he needs them calms him down!! I can only hope to someday be as strong as my little boy. He is such an inspiration!!
Today starts the LONG week at TGH!! Ethan's chemo should begin in about an hour and takes 6 hours to infuse!! The chemo drug he normally gets only takes 15 minutes. He will also be having 5 days of prednisone and cortisone eye drops every 6 hours. He is NOT going to be a happy camperoutput the eye drops. And to add to all of that, I will have to give Ethan a shot for five days after we leave the hospital. The doctor told me the nurses would show me how to do it and I could practice on a orange. I'm so glad one of my best friends is an RN!!:)
One of the days while we are here Ethan will have an MRI to make sure the LCH isn't growing anywhere. We don't expect to find anything. I think I'm going to try and bribe a nurse or doctor to snip his remaining stitches while he's under. He won't let me near them and his plastic surgeon said to go ahead and snip the ones that haven't fallen out on their own.
Hopefully this week flys by and Ethan tolerates this chemo drug as well as the other. It's hard for Ethan and me to be away from Liam and Brandon for a whole week. I'll keep everyone updated as the week goes on.
Ethan had his 6th treatment last Friday and again did awesome!! I can't believe it has been 6 weeks and we are halfway finished. He is such a brave little boy. Our visit was pretty uneventful except that had to access his port twice:( It just wouldn't give any blood. It's hard to see your little one scared and in pain but he is truly my little super hero!!
There is no chemo this week but we are being admitted into Tampa General Hospital on Monday for a 6 day stay. We are not looking forward to it but the doctors have reassured me that Ethan should handle this chemo well too. While we are there he will be having another MRI to check to make sure the LCH isn't growing anywhere or coming back. The doctor doesn't expect to find anything but we have to make sure.
We saw Ethan's plastic surgeon yesterday and he again said that Ethan looks awesome....and he does!! I can't believe how far we have come since 2 months ago. It's also hard to believe that yesterday marked 2 months since Ethan's surgery!!
Ethan is basically off the prednisone now and it makes such a difference. A lot of the side effects are starting to go away and should be gone in two weeks. I just wish he didn't have to go back on it in a month. I know the drug plays a major role in keeping the LCH away, but it is a horrible drug!!!
Ethan is improving every day and I am so thankful for that. Thank you all for the prayers and support!!
Ethan had his 5th chemo treatment yesterday. He did wonderful as always and we were out of the hospital by 2pm!! Still no sickness or hair loss, we can only hope and pray that he continues to do so well.
We did get some unexpected news yesterday. Instead of Ethan only having 6 weekly chemo treatments before maintenance as we had originally thought was the plan, he will be having 12. That means that we are only almost half way finished. On 2/24, a week after his 6th chemo treatment, we will be admitted into the hospital for a 6 day stay. Ethan will be receiving chemo for 5 days straight. They will be giving him a different drug, one that will penetrate his brain. While every person tolerates chemo differently, I have not heard good things about this drug and it will probably be pretty tough on his little body. After this stay he will get a 3 week break before we start chemo up again for 6 more weeks. I thought I might be able to go back to work in March but it looks like I probably won't be able to return until next school year. That means I will have been off of work for almost an entire year!! Thank you everyone for your continued support, it is the only way were are being able to stay financially afloat.
Now for some good news, we are getting to start weaning Ethan off the prednisone!!! He will be completely off in 2 weeks and won't have to take any of that awful drug for an entire month. He will have to start taking it again when he starts his second cycle of vinblastine chemo BUT he won't have to take it every day like he is now. I am hoping that the next few months pass quickly and that we can start finding our new "normal". This disease is awful and I can't wait to put all of this behind us.
Thank you again for all of the support. It truly means the world to us.
Pictures of Ethan's reconstructed skull!!
Ethan had his 6 week post-op CT scan yesterday. I am happy to announce that everything looked great!! Our surgeon said that there is NO sign of new tumor growth and that his skull is healing wonderfully. Ethan still has to wear his helmet to protect his head but other than that he doesn't have a lot of restrictions. He looks so good that we don't have to go back to the surgeon for 3 weeks and his next CT scan to check for skull healing wont be for a year. The photos of his reconstruction are amazing!! I'll post some here for everyone to see. His plastic surgeon did an AMAZING job!! Luckily he is young enough that his bones will regenerate over time and his skull will be like new.
We went and saw the eye doctor last Monday. He is having slight vision problems in his left eye but nothing major and it will most likely resolve on its own. At the most, he will have to wear a patch.
We are headed back to TGH tomorrow for Ethan's 5th chemo treatment. He is doing so well they have decided that we won't have to stay quite as long tomorrow. We also get to start tapering off the prednisone tomorrow. We are so excited to almost be done with this medicine, the side effects are not nice!!
Yesterday was Ethan's 4th treatment and a VERY long day!! We got to the hospital at 10am but instead of them immediately accessing his port, they decided that we'd try giving Ethan a small dose of an anti-anxiety med to help calm him before they accessed him. Unfortunately it didn't help that much and it delayed his port being accessed until almost 12pm!! He finally got chemo around 3:30pm and we got to head home about 6pm. Somehow Ethan made it through without a nap, which left him tired and cranky. Our evening ultimately ended with Ethan having a raging tantrum. I REALLY hate prednisone!! Poor little guy screamed for 45 minutes before he was completely exhausted and fell asleep. We only have one more week of prednisone at the high dosage and then we get to start tapering back:0)
Despite all of this,Ethan continues to do well with his treatments. He isn't getting sick and he hasn't lost any hair either!!! We only have 2 more weekly treatments. I'm so proud of my Super Ethan.
Thank you all for your continued support!!! I can't believe we are so close to reaching our goal. It means so much that I get to stay home with Ethan during this challenging time.
We met with Ethan's plastic surgeon today, he said that Ethan looks great!! He is such a wonderful man and I am so appreciative of everything he has done for us. I am sitting here typing this positive post because of him.
We scheduled his next CT scan for next week to make sure that his skull is healing properly. We also have appointments to see the opthamologist and neurosurgeon for checkups. So far everything has been great and we are moving farther and farther from this scary ordeal. I can't wait for this to be just a distant memory!!
We go back to the hospital for Ethan's 4th treatment on Friday. They are going to try giving him a small dose of an anti-anxiety med to help with his fear and anxiety of having his port accessed. Hopefully it helps calm him.
Thanks again for all of the prayers and support, it is working!!!
Ethan did great with his chemo yesterday. He hasn't been sick at all!!! It's hard to believe that he is halfway done with his weekly treatments.
We go back to the plastic surgeon on Monday for a check up and we will probably be scheduling his next round of tests. Gotta continue with the MRIs, CTs, etc. to make sure the LCH is staying away and that his skull is healing properly.
We are definitely starting to see the effects of the prednisone now. His little face has gotten so round and his belly is so distended that he almost looks pregnant. All that plus the mood swings. Only 2 more weeks and then we get to start tapering off the stuff. I can't wait to get my sweet little boy back, physically and emotionally!!
Thank you everyone for the continued prayers, they are definitely working. Ethan is doing great and handling all of this like a super hero, SUPER ETHAN!!
I can't believe yesterday marked one month since Ethan's surgery. We have come so far, yet still have such a long road to travel.
Ethan has made such progress in the last month. His incision is almost completely healed and his eye is open and looking great. He is going to have a large scar on his head and his forehead is still lumpy but hopefully both of those will diminish with time. His port incision has also healed and he doesn't act like he even feels it.
He had his second treatment last Friday and he breezed right through it. He didn't get sick at all!! He didn't like when they accessed his port but it was a lot easier then having an IV. Chemo days are long but hopefully he won't get sick anymore. They also checked him for diabetes insipidus again and he tested negative!! Hopefully it will stay that way.
After next week it will be time to have another CT and MRI to check to make sure his skull is healing properly from the surgery and to make sure he continues to be LCH free. We are spending LOTS of time with doctors and at TGH. Luckily he has some really great doctors and nurses.
We are at TGH today for Ethan's second chemo treatment. So far things are going well. They were able to access him port with no issues, he just screamed the whole time because he was scared:( Right now they are giving him fluids and will hang the chemo medicine about 2pm. We got here at 10am and will probably get to leave about 5pm. It's going to be a long day, but we will be one day closer to remission!! Ethan got sick right away last week, I'm hoping that iota doesn't hit him quite as hard today. I'm so grateful my mom came with is today in case Ethan is sick on the car ride home. Please pray and keep your fingers crossed that he's not.
Thanks again for all of the prayers and support. It means everything to us!!
Today was a day full of doctor appointments. Liam went to the pediatrician this morning because it seems like he might be getting a cold and we wanted him checked for RSV. We can't be too careful now that Ethan's getting chemo. Then Ethan had to see his oncologist and plastic surgeon. Oncologist said he looked great and had us make an appointment for bloodwork to be done Wednesday to make sure his levels are good before his next treatment on Friday. After that (our appointment was at 1pm and we didn't actually see the doctor until 2:30pm) we went to see the plastic surgeon. He said Ethan looked great!! He no longer has to sleep elevated, which means we no longer have to watch him 24/7!! This is huge because we have been taking turns watching him for a month.
Overall he is doing well and it seems like things might be somewhat returning to normal. 6 more weeks and one more long hospital stay and we'll be through the tough part.
We are making headway on getting Ethan to take his meds. It is difficult but we are getting it done. I just wish he'd understand why we are having to force him to take all this medication:(
We are also starting to see side effects from the prednisone. Ethan is having MAJOR mood swings. He is not the same little boy we are used to. He is also starting to eat a ton.
Thank you all again for the continuing support. We will get through this thanks to all of the wonderful people helping us along the way.
getting his port
LOTS of food after surgery
Ethan started chemo yesterday and it was NOT easy, not that we expected it to be. He was scared and cried the entire time. I think he was scared because the nurses were in full gown, masks, and gloves to administer it. It only took about 15 minutes for the drugs to go through his port but the whole process took around an hour. Unfortunately on the drive home from the hospital yesterday the sickness stared to kick in. We weren't expecting it to start that quickly. He has been sick for most of today but seems to be starting to feel a little better. Hopefully he'll feel good tomorrow.
We have also had the challenge of trying to get Ethan to take all of his meds. we are trying to be creative but the prednisone just tastes awful!! I'm not sure how we are going to do it 3 times a day for 6 weeks.
We go back to the plastic surgeon and oncologist on Monday for follow up visits. Ethan's eye is looking great and the swelling is almost gone!! His plastic surgeon is going to be very happy. We did get positive news yesterday that his spinal fluid came back negative for LCH!! We will go back to TGH on Friday for his next round of chemo.
Thank you all again for all of the support an prayers. YOUR help is the only reason I'm being able to stay home with Ethan during this difficult journey!! My family appreciates it more then we will ever be able to express. THANK YOU!!
Ok....we got all the info on Ethan's chemo plan today. He is going to be on weekly chemo treatments for 6 weeks along with daily steroid treatments. After the 6 weeks he is going to have 5 days of a brain penetrating chemo. Then he will be on maintenance for 11 months. Maintenance means one chemo treatment every 3 weeks along with 5 days of steroids and a daily chemo pill. He will be watched closely to make sure there are no signs of the LCH coming back. It's going to be a LONG year but we will get through it!! Thank you everyone for your continued prayers and support.
Day 3 of our hospital visit. Ethan is scheduled to have his port put in and a lumbar puncture this afternoon. On Monday he had an MRI, CT, bone marrow extraction, an X-rays of all of his bones to see if the LCH was present anywhere else in his body. All of the tests from Monday came back negative for LCH!!! We are so excited about this news. When I spoke with Ethan's oncologist this morning the plan is to get his port installed today, chemo tomorrow, and then we should get to go HOME:0) A BIG thank you to everyone for all the prayers and the continued support. We aren't out of the woods yet but it sure seems like we may be getting closer.
Ethan had a fun time at the circus yesterday. He really liked watching the elephants. Today we got admitted in to TGH to have all of the necessary tests before chemo starts. They managed to get all but one test done while he was under anesthesia today. His port is scheduled to be put in on Wednesday.
Thank you everyone for your continued support. We truly appreciate everything!!
I can't believe Ethan turned 3 today!! He had a blast with his friends at his party. They all wore helmets so he wouldn't feel different. Ethan loved his Super Ethan cape we got him. We figured that since he's a super hero, he needed a cape:) It was so nice to have an evening that seemed normal and wasn't dominated by talk of LCH. We go into the hospital Monday to start all the testing. Please continue to pray for the best outcome for Ethan. We are going to enjoy the weekend as a family and go in on Monday ready to fight this awful disease!!
Sorry it's taken me so long to post an update. We didn't hear what we were expecting at the oncologist today. Ethan will not be starting chemo tomorrow. Instead, on Monday he will be admitted to TGH to have some extensive testing done to see if this bastard LCH disease is anywhere else in his body. The oncologist needs to know before he can make a plan for treatment. He will be having an MRI, CT, spinal fluid test, bone marrow test, complete scan of ALL of his bones, a test for central nervous system involvement and a test to see if he has developed a specific type of diabetes that is common with LCH. We will be in the hospital between 4-10 days depending on what the tests find. I am in shock!! I thought the unknowns were behind us. Please continue to pray an thank you for all of the continued support.
We are completely blown away by everyones generosity!! I'm not sure a simple thank you is enough BUT thank you.
Ethan is recovering VERY well from his surgery. I am having to keep him from running and jumping and trying to be a typical (almost) 3 year old boy. We go back to the cranial facial surgeon today for a check up. The doctor told us last week that Ethan's eye should be open and the swelling should be down by today but unfortunately neither of those things have happened. He may want to aspirate the fluid to help the swelling go down. We go see the pediatric oncologist tomorrow to talk about the plan for chemo. Chemo will most likely start tomorrow January 6th, Ethan's 3rd birthday=(
Ethan is in great spirits and with the help of everyone we will get through this. Thank you again for helping me be able to stay home with Ethan during this journey.
Hoping Mr. Sun shines brightly on Ethan in 2012
Happy New Year everyone!! Thank you so much for all the support. I can't wait to beat LCH and make 2012 an awesome year for Ethan and the rest of my family.
Thank you everyone for all of the support!! Ethan is feeling better every day. We have follow up appointments with his cranial facial surgeon and neurosurgeon next week. We will also meet with Ethan's pediatric oncologist and most likely begin chemo on Friday (Ethan's 3rd birthday). We are so grateful to have such amazing friends. Happy New Year's Eve!!
Ethan was born on January 6, 2009. On November 29,2011, a few weeks before Ethan was to turn 3 years old, our world was turned upside down. After multiple visits to the pediatrician for a puffy eye, we were sent to St. Joseph's Children's Hospital for an MRI that revealed a tumor above Ethan's left eye. Following this discovery, we consulted with the cranial-facial plastic surgeon who would eventually remove the tumor. He ordered a CT Scan for Ethan so that he could get a better idea of how involved the tumor was with Ethan's skull, eye, and brain. Due to the location of the tumor, it was determined that we would need a neurosurgeon in addition to the plastic surgeon; we also realized that due to the proximity to the brain and eye, we could not biopsy the tumor prior to surgery, which lead to wide speculation of a diagnosis. From the realization that surgery was a necessity, the plastic surgeon wanted to schedule the operation ASAP in order to protect Ethan's eye. Unfortunately, due to hospital politics, he was unable to schedule the surgery with a neurosurgeon that he was comfortable working with, so we were referred to the University of Miami. On December 6, we arrived in Miami. We stayed in Miami for 5 days and consulted with multiple doctors and ran more tests. Following more speculation, surgery was scheduled in Miami for December 30, 2011; it could not be scheduled sooner because the neurosurgeon was going on vacation for Christmas. In the mean time, our doctor in Tampa was still working around the clock and calling in favors in order to schedule the surgery in Tampa sooner than December 30 as he did not want to risk allowing the tumor to jeopardize Ethan's eye. We were sent home to wait until the end of the month and told to "enjoy the holidays." It seemed that the roller-coaster was never going to end. On December 16, we got a call that our doctor in Tampa, after exhausting all of his favors, was able to schedule Ethan's surgery in Tampa for December 22, 2011.
The surgery was a success and the tumor was completely removed. Ethan was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare cancer-like disease that affects 1:200,000 children. While the diagnosis could be worse, this is still a serious disease with no government funding available for researching a cure. Ethan will be starting chemo during the first or second week of January, possibly on his 3rd birthday, and the next six months will be difficult as we begin the journey of beating this disease.
On September 27, 2011, our family was blessed with the addition of Liam, Ethan's younger brother. Melissa and I have used all of our available sick time through June 2012 with the leave that we took following Liam's arrival, making it difficult for us to be off of work. However, Ethan needs us around as much as possible, especially Mommy, over the next 6-8 weeks during his first round of chemo and during any future treatments. We are trying to raise money that will help with the costs of Ethan's care so that we can keep our focus on keeping his spirits up and beating this disease. Asking for and accepting help has been one of the most difficult things that we have done, but we need any and all help that you can provide. Anything helps and please repost this page wherever you think may help. We truly appreciate any and all support. Please keep Ethan and our family in your prayers as we begin our battle. Any money raised that is not used in costs associated with Ethan's treatment will be donated to help educate and/or research LCH.