Dylan’s Battle

Hi everyone! So sorry I haven’t updated in awhile. Dylan has been home with some issues. As you all know he was diagnosed with GVHD, graft verses host disease. His new donor marrow is AWESOME and doesn’t like his body. This marrow is strong and wants a healthy body. We are praying that with the new medicines that the doctors prescribed, the new marrow can adapt to it’s new body. When checked, the test showed that all the cells in Dylan’s body are 100% donor cells! Which is great news. It is also a good sign that the Leukemia won’t come back. So, as Dylan has some minor issues due to the GVHD, we are hopeful that in the long run, it will be worth it. We have had two outpatient appointments in SF, on Wednesday’s. It is quite a trip, but are glad it is only for the day and we get to bring Dylan home with us. This last visit, docs were concerned about a possible infection Dylan may have. They started a new antibiotic and some pain medicine, Dylan still having severe pain when he uses the restroom. Other than that, Dylan’s days consist of LOTS of pill taking….we are up to around 30 a day now…labs, checking temp, blood pressure, bathing him, and still watching him for signs something isn’t right. We rent movies, play games, snack a lot(too much), and try and have a normal time while we are at home. He misses going to school, going to church, and just being able to inside a store/fast food place. It is so weird what we take for granted, but we do. Dylan has put on some weight, the steroids have really taken a toll on him. He is constantly hungry. But that too will go away…in time.

As for the rest of us, we are good. We are adapting to our new life, and we are grateful that we are together. Keeping everyone healthy is HARD. But there are a lot of prayers…a lot of Germ X…a lot of vitamins! We can only do so much, we know.

Thank you for all your prayers, your concern. We know you hurt when we do…we know you love us, and we love you!

Taking it one day at a time…..Stephanie Lyon and family

Hi everyone. Dylan is still in the hospital, however, it looks like he will be heading home tomorrow or Sunday at the latest. The docs are just waiting for his rash to start improving, which seems to be the case now.  

I got home yesterday afternoon, as it is his dad’s turn to stay with him now. 

So, last time we came home, I unpacked…completely. Then when we were “rushed’” to SF in the middle of the night, Saturday, I wasn’t very prepared. So, I have learned my lesson and will keep a just in case bag packed. It is never easy to be jerked out of your routine and put everything on hold, for who knows how long….but being prepared does help.

Dylan’s spirits were up today, I think hearing he will be coming home to family and food helped. It is funny how much you miss a normal dinner. I know Dylan longs for the day where things are normal.

 We all do. So, I get Dylan on Monday and we will spend as much time with him as we can…the kids only saw him one day…so they are really missing him.  Sunday I will do my weekly spring cleaning, before Dylan gets here, trying to eliminate as many germs as possible.

I don’t know if we take him back up this Wednesday or not…being released from the hospital so close to outpatient/clinic day, they might just hold off til the following Wednesday. That would be nice. But IF we have to go, we go.

Thank you all for the prayers for Dylan. Finding out he got GVHD, graft verses host disease, was another road block in his recovery. I think we are all starting to realize how long this road is now. Even if the docs did tell us everything in those pre-BMT meetings, I don’t quite remember it being so much. I am sure they did, and I am sure I blocked a lot of it out, so I can sleep at night. But it is kind of in our face now, so we have to deal with it. I was soooo excited to have him home, so he could be out of that hospital room, but having him home is scary. Cautious isn’t the word to describe how we have to be with Dylan now…..it is so much more. I feel like I am this shield to block out the germs, to protect him. Yet, his own body is being attacked from the inside. I can’t stop that. I can pray. I am and I will. Hope to see you all on Sunday….

Love the Lyon Family

Hello everyone. Dylan’s first night home was Wednesday and besides a lot of excitement and nerves, it went well. The nurse came to our house and showed us what we need to know to take care of Dylan. I think everyone pretty much understands and it seems to be going well.

Dylan has been eating and drinking more than enough for this stage of recovery. He has even ASKED for snacks, which is great to hear! He has a running nose, which the hospital is aware of. They have us watching him to see if anything comes of it or not. He also broke out into a pretty bad rash today, all over his body. He was given Benadryl, also known as the miracle drug, and we are to watch that also. We do A LOT of watching, as you can imagine.  The nurse will come again this Monday morning to get blood from Dylan, they may want to see him in clinic on Monday, due to the rash. If not, I take him to SF outpatient on Wednesday for his 1st follow up appointment @ 9:15.  The hope is that he will only need 1 appointment a week…every Wednesday for the first couple of months. Just to monitor him, his new bone marrow, and his T and B cells…to make sure they are coming back, healthy!

I have many concerns as a mom.  I worry about his breathing a lot. He seems to struggle at night. I will definitely talk to the doctors about this at our appointment. The rash does concern me too. I have looked into GVHD, which is Graft verses Host Disease, and respiratory problems and rashes are symptoms related to this. I don’t want to get upset before I have to, because I may NOT have to. I just don’t want to be blind sided by anything, that is why I choose to read up on all of this stuff. I know I can not change any of it, nor do I feel I am in control, but knowing about what could happen is how I  prepare myself. It may not be right, but it works the best for me.

A lot of you have called or emailed to check in on us, and that we are grateful for. We are SOOOOOO happy to be home. No matter what level of stress comes along with being SOOOOO far away from our hospital, we are comforted by God and His people. Thank you all again for the love you show our family.

Please continue to pray for Dylan and that his body accepts the donor cells…this is our number one concern right now. We know God is in control, as we continue to see Him work in wonderous ways. We will continue to turn to Him and thank Him for everything.

Love the Lyon Family

Hello everyone. It is great to blog when there is good news to share with you all. Dylan will be released tomorrow! Yes, it is true! Praise the Lord!

Dylan is feeling well, although he will go home on many medicines, including IV fluid at night. We will have to purchase a digital blood pressure kit tomorrow, as it will needed to be checked daily. A nurse will come to the house to help us get used to all the new procedures, and we have people we can call IF we are not to sure of something. I think we have it pretty much under control…but you never know.

Dylan has been eating small meals…which is better than nothing. He has said he wants Pizza Hut tomorrow. I don’t know how much he will be able to eat or if his stomach will handle it. The nutritionist said to try lots of different things, his taste buds may have changed.

Preparing meals for Dylan will be different now also. He will not be able to have well water, even if it is boiled. He will not be able to have certain fruits, some cheeses, deli meats, or food from ANYWHERE people can alter it. Most fast food places have strict policies, but there is a list of places that are excluded. It is okay though, fast food isn’t that appealing anyways.

So, as we head into our next phase of this journey, we continue to thank God for His grace. He has given our family “more than enough”. I truly believe that.

On an earlier email today, I thanked many families…however, omitting our Pastor’s, for that I am sorry. We are so grateful for their guidance during these tough times. So, thank you….

 And also to Mr. Matthew, our Sunday School teacher, who has really opened my eyes and helped me  realize how well we are taken care of. And to be able to say, “we have everything” because we have the Savior.

Thank you all…the Lyon family

Hello everybody. I might be going home soon, and I can’t wait! I know I won’t be able to go anywhere once I am home, but it will be better than the hospital.

I started to eat yesterday…just applesauce, pudding, some chips…and it all stayed down. That is important for me to get to leave. Food tastes a little different sometimes. They say that it isnormal though.

I have been feeling a lot better. I have more energy too. All my mouth sores are gone and I have very little pain. They are starting to take away all the  IV medicines, I have been taking them by mouth. That also helps put me on track to go home.

Well, we have been reading, doing madlibs, playing video games, watching movies, coloring, drawing, doing art projects, you name it…we’ve done it. It will be nice to be home and just be home.

Thank you for the cards while I was up here…and the prayers.

Dylan….

I have lost all track of time, really. I am home now, heading up to the hospital tomorrow morning.  I have been going non-stop since arriving home Saturday afternoon. Clothes to wash, meals to make, bags to pack, it is a never ending cycle. However, as it may sound like I am complaining, rest assured, I am not. I know it could be a lot harder and a lot worse.

 As many of you already know, a little girl from our town passed away on Tuesday of brain cancer. Her name is Madison and we all stayed at the Family House off and on at the same time. Her mother and I went to school together in junior high and “re-met” in March after both of our children relapsed. I had asked for prayer for Madison a few times through out these past months and have shared her story with some of you. This Saturday we will be attending a memorial service for her,to say goodbye to a sweet, brave girl;  as we continue to pray for the entire Magee family during this time.  I have no words for my childhood friend, who is suffering the worse loss imaginable. I just know I need to be there.

As for Dylan, doctors are being extremely positive about him as his body recovers. As his counts continue to increase, we wait for Day 21 to see if his body accepts the donor cells. If all goes well, after that initial acceptance, we will begin to discuss a release date from the hospital!!!! Can you believe it??? It won’t be for another few weeks, I think, but it may be sooner. Dylan has been amazing through this very difficult time. I have seen more tears from him this past month, than in his entire life. So, I know he suffered, I know he felt like giving up, but I know he wouldn’t. God has made him stronger than most, including myself. I watch in AWE of how my Savior has worked in his life already, and I am eternally grateful.

Now to the scary news…Dylan is coming home. You have to understand WHY I say it is scary. Our entire home MUST be “Dylan proof”, don’t laugh….okay, go ahead, we deserve to laugh!~ But really, from the ceiling to the floor, it must shine. So, I will be gone the following 3 nights, but when I return….it will be to clean, clean, clean! I got a head start today in his room…getting rid of all the dust. That is HUGE! We will have to get some extra cleaning supplies, shampoo carpets, and make the house much like the hospital, only cleaner. But it is so worth it. Dylan will be able to be home. He will leave only to go to his doctor appointments(every Wednesday in SF), and go back and forth from our home to his dad’s. That is it, for about 6 months to a year, depending on when he is officially released from BMT docs care. No church, no school, just home. But home is good enough!~ He will be pretty much wiped out, they tell us anyways. So, board games, reading, video games, school work, everything he has been doing this whole time, only with his ENTIRE family now!

His counts today were 480…500 is where he needs to be for at least 3 days, then the kids can visit him. It is exciting!

So, sorry it took so long to update, everything that has been going on has kept me away from the blog. But I know you all care and this is the best way to share about Dylan and his progress.

We love you all and appreciate the love and prayers we get from you!

Always,  Stephanie and family

Hello everyone. Dylan has had a very rough last couple of days/nights. His Mucasitis has overtaken his GI tract; his mouth, throat, and stomach are full of sores. Dylan can’t eat, drink, and has severe pain just taking care of his mouth. The have strict hygiene in the BMT unit, including brushing and mouthwash four times a day, this has been okay up until a few days ago. Each time we help him, his mouth bleeds. So, of course, Dylan doesn’t look forward to that at all.  They have upped his pain meds to be a continuous flow now, with a button for more, if needed. Dylan doesn’t ask for pain medicine often, but he has woken up crying for it lately. I have found myself pushing the button more than once for him, it is horrible to watch him try and be so brave. I think the docs reassuring him that 99% of the kids are taking the pain medicine on a continuous flow, kinda helped. Dylan wants to break records, I can tell. When one of the doctors mentioned that one of the kids went HOME on day +18…Dylan got it in his mind that he too can do this. But of course, Day +17 is Dylan’s goal. He is amazing, I tell you. However, he is not headed in the direction of breaking any records anytime soon, one day I know he will.

So, I am home til Wednesday, when we head back up to be with Dylan. I am constantly torn. I worry about Dylan all the time, if I am here @ home or there with him. Then I also worry about the other kids while I am away. They are in great hands, I know. But I sometimes feel I am missing so much, and that is selfish, I know. I want nothing more than Dylan to be well and come home and try and be a kid, just a kid. His family misses him very much, and even though I get to spend a lot of time with Dylan, I miss him here @ home. I know it is going to be awhile longer and we need to focus on the goal, and that is Dylan being healthy. Sometimes I forget what Dylan was like before all this cancer, before all this chemo, he was little, just turned 6 years old. But this is a part of Dylan now, this is who he is. And of course we love him, sick or not.

Michael started work on Saturday evening, the hours are hard right now, but his body should adjust soon. He is sleeping now and I am working on keeping the two little boys quite.

Well we continue to ask for prayers for Dylan’s recovery and for his body to accept these donor cells. Day 21 is quickly approaching, and we should start to see signs either way. Thank you for the email and cards, thank you for helping lift our spirits.

Love, Stephanie and Family

Hello everyone. Dylan’s doctor came in to check on him due to some persistent nose bleeds. He said it is common but they will do some tests anyways.

We also got some real good feedback from them about how Dylan is doing. For it being Day +7, he should be a lot worse off right now. They expected  him to be completely sick all of the time, and he is not. He is uncomfortable, yes, he has pain, yes, but not all of the time. It isn’t constant and we are so very grateful for that.

I truly believe that ONLY by the grace of God is Dylan doing so well. God’s mercy is upon Dylan and all of us and we must never forget it. Times may get bad, they may not sail so smoothly as they are now, but we must ALWAYS remember how great He is to His people. God has provided us with trustworthy people to watch our other children as we go back and forth to SF. He has allowed Michael to continue to work, despite the difficulties with his supervisors not being sympathetic to the situation. God has provided a strong, Biblical church for us, so our family will grow in His Word and be a light in this world. I strive for that daily and I am honest when I say that it doesn’t come easy. When some days are hard and I feel pulled in all different directions…I have to be reminded that the here and now are exactly just that…here and now. This small time we are here, is to glorify God, and how can I do that when I complain about what He has done for me? Who am I to question His decisions? He has continued to live up to His promises as I have continued to fail. He forgives me again and again.

So, at times I get upset, angry, tired, and when I am almost done, He sends a messenger. Someone to guide me back on His path, back His way. So, thank you all because at different times, you have all helped me focus back on Him, back on the cross.

Thank you for praying for Dylan and all of us.  He opened many cards today from his church family and he had a wonderful smile on his face the whole time.  He also got to see 2 of his little brothers through the window of his hospital room. Ryder and Coltyn came up with Michael when they dropped me off and I think the boys were as excited to see Dylan as he was to see them.

Their love for eachother is amazing.

Always, the Lyon’s

Hello everyone. Dylan had to start TPN last night, that is where all his food is given to him through his central lines in his chest. He has lost 4 pounds in the last 2 days…and a total of 5 since he has been admitted on the 8th. This is the main reason they started the TPN now. His mouth sores have been staying under control, which is a very good thing, but the weight loss is not okay. They want to get a handle on it before it gets too bad.  So, all Dylan’s nutrition his body needs will come from this bag. Kinda weird, but we are glad for it.

Dylan has been feeling a lot better, which we are so thankful for. He had a rough time but he made it through.  The next few weeks will be a roller coaster of symptoms and emotions for Dylan. He will need many blood transfusions and lots of preventive medicines to ward off any infections. He will have no immune system, so that means no way to fight off anything. He knows it’s going to get harder before it gets an easier. I pray I am as strong as him.

Thank you for the outpouring of love and care for Dylan and our family. It would be impossible to be here if it wasn’t for the help you have given us. The rides to UCSF, the childcare help, the meals and all the cards and prayers, mean so much to us.

Thank you all! Love Stephanie and Dylan…

Dylan’s transplant did happen today, and after 5 hours of transfusing, it is complete.

 Dylan is still not feeling well from the radiation and the cocktail of different chemos though. He isn’t going to feel better for awhile, they say. I pray he isn’t THIS sick the whole time, it is so hard on him.

This starts a whole new era for Dylan. Instead of chemo and treating the cancer…we are waiting and watching for Dylan’s body to accept his new marrow. This is huge! His body could not recognize the marrow as “friendly cells” but instead as a “foreign object” invading his body. This could be very bad and we pray it doesn’t happen. Since Dylan’s donor was a perfect match, he has a much better chance at a successful transition.

Speaking of our unknown donor, continue to pray for him. He may be in pain today and for a few days to come. Now that I know what he had to go through, I feel for him even more. I would tell you, but it may hinder some of you from joining the registry, and I wouldn’t want to do that. It is a blessing to be able to help someone else, to help save their life, that is forever. And we are forever grateful he was available for Dylan.

Dylan hasn’t ate in about 3 days, he tried today, but it didn’t work too well. They say this is normal for BMT kids and not too worry. However, if it continues he will get fed through his IV to make sure he gets all the nutrition he needs. We didn’t really want that for him because eventually he will need to eat on his own before he can go home. I guess we can deal with that at a later date, if we even have to.

So, September is Childhood Cancer Awareness Month…and what a better way to end the blog today with this….take time to help out anyway you can. By joining the registry, giving blood, or visiting a hospital cancer ward.  Many of you have helped us, you have been AMAZING! But there are so many sick kids, so many need our prayers alone. So, yes rejoice that Dylan had a BMT today, but there are many that don’t get this far. So, say an extra prayer for hope in finding a cure for this horrible disease. Who knows what could happen tomorrow….Only God.

I think of my childhood friend Keri, who’s  6 year old daughter is nearing the end of her short life. Her strength has been an example to me, as she continues to tell others of this disease. May God give her and her family the comfort they so need at this time.

Thank you all and we will continue to update when we can.

Love Stephanie & Family