Thursday, October 17, 2013

Update on Nathan

It has been a while since I posted, almost two years actually. When we got home I think I just wanted things to get back to as normal as possible so I wasn't posting. We went to MD Anderson at the end of September for Nathan's check up. He did a bone density test, blood work, and scans this time around. His blood counts were up from last time, still not completely back to normal, but better. The doctor said his bones looked great after all he has been through. "Strong" is the word she used so that was awesome to hear considering at one point it was so bad in his bones, spine mainly, that if we couldn't get it under control it could have caused severe permanent damage, or possibly paralyze him. His scan came back CLEAR!!! Always nervous for every scan but to hear the words clear is the best feeling in the world. On October 26th will be Nathan's Re-Birthday, (two years post transplant) so he will officially be two:) That is a huge milestone for a transplant patient. He has had hardly any issues since his transplant other than one case of shingles, some skin rashes, and mouth sores, other than that he has been great. No signs of rejection from the transplant so far!!! We filled out paperwork yesterday to release our information to his donor and we are hoping he will get in touch with us. It would be so nice to have contact with him and let him know how grateful we are for what he did for Nathan! We were told they think he was international maybe from Germany, but not sure until they get all the info. His donor would be 21 now, and can choose to stay anonymous. If he chooses that we respect that as well. We were told sometimes people are uncomfortable with getting in contact because of fear of something going wrong with the donor recipient like rejection and that puts them in a tough position. We will see what happens. Praying he will reach out to us when he gets our information. Nathan just celebrated his 30th birthday on the 8th. Such a big milestone, at the age of 30 going through cancer twice now, I am sure he feels blessed. I dreaded turning 30, but for Nathan he prayed to turn 30. Crazy how our life experiences make us appreciate small thing or things other people may not look forward to. Any how I thought I would post a few pics of Nathan around this time during the transplant process and a few of him now he hates to see the ones of him sick but to me it's a reminder of all he has overcome. It is hard to believe how far he has come and I can't say enough how blessed he truly is! Thank you to everyone that continuously checks on him. Anyhow here are a few of my favorites over the last two years.

Monday, November 21, 2011

As the saying goes, there is a light at the end of the tunnel.

First off I want to start by saying thank you to everyone that helped out with the BBQ benefit. I appreciate everyone who sold tickets, came out and bought plates, helped make food, brought food, helped set up, and helped all day. Most of all THANK YOU to Point of Grace Church for donating the brisket, showing up with smiles on their faces and working all day for us, and for cooking the food. We are so very thankful. I could not have done it without the help of so many great people and some that Nathan and I do not even know! What an amazing thing to realize there are still caring people in this world!

It has been awhile since I have updated. We are going on almost four weeks out from Nathan's transplant. The transplant went really well. It took most of the afternoon but Nathan held up really well through everything. Before the transplant he was a B negative now he is O positive. I am so grateful to the amazing young man that did this for my husband and the fact that hopefully Nathan will now have his non cancerous cells and he can live a normal life for once without the fear that at any minute his cancer will be back and he may not have anymore options. The days after the transplant were a roller coaster. Some days he was doing decent and then some days he was not good at all. He was pretty down in the dumps, to be expected he has been through alot and it's hard on him to be in the hospital especially for so long. He didn't eat really anything for about a month. A little soup, but pretty much just drank fluids and was feed through the port. He had a great deal of nausea and vomiting. Before transplant his counts were knocked completely down by the chemotherapy. Then they do the transplant, after that they give him more treatment to knock the counts back down and then they have to rise again on their own. This is when the transplant starts to take. He had some severe bone pain for about two days but the doctors said that happens to some people when his counts start to rise. He had a slight rash due to his platelets being so low, and a little jaundice due to an indirect liver function being off, but since it is indirect that was not serious and after about a week his color started to get back to normal. His counts rose pretty quick and the doctors say he is doing really good. So far no signs of GVHD (Graph vs Host Disease), although his doctor says that could change at anytime even years down the road. We have to keep an eye on any sings of at all times. He was released from the hospital early and went to mainstay close to hospital since he has to be within so many miles and has to go in for treatments and labs. He was supposed to be going everyday but is now going twice a week. He gets labs, test, fluids, port dressing changed, as well as meet with doctor, pharmacy person, and whatever else comes up. On the other five days he gives himself everything through his port. This concerned me at first that he wasn't going in but for Nathan it is better because of his anxiety and sickness the hospital seems to cause him. He is doing really well taking care of it all himself. He is taking quite a few medications in the mornings and in the evenings. The other day he had really severe stomach cramps that kept him up all night but that was due to one of the pill he is taking. Today he moved to an apartment close to the hospital. His lab work today showed that his counts have dropped again as well as his platelets and his kidney function was off but the doctor said it could be because of his meds and he is not getting enough fluids and is dehydrated. All in all he is doing well. His energy is up. He is eating alot more everyday. He lost over 20 pounds and lost his hair about two weeks ago, but he is still as handsome as ever! Despite that his color looks good he isn't nearly as thin or frail as the first time he went through all this. Just taking it day by day, that is all we can do. Continue to pray for him please, he has been through so much! I read this the other day and thought it was so true and beautiful.......
The hard lessons learned through the tough times ready us to deal with better days by building into our lives needed virtues such as grace, dependence, and perspective. Bad times produce good things in us that mold us into the type of people God can trust to handle more good things.
Nathan is just that, a person of grace, and amazing perspective. He always calms my soul and makes me want to be a better person. I do feel that God in some way is molding Nathan into the person he is and that good good things are ahead for him and for us as a family. Everyday is always a blessing!

Tuesday, October 25, 2011

Hard week ......Transplant today

Last week started at 3 am Monday morning. Nathan had to give bone marrow and had a ton of tests. It was a full day. Tuesday started early as well and he received the port in his chest, again a full day of more testing. In those two days we were exhausted and it was hard on Nathan he had to go through a lot. Day three we met with his stem cell doctor, he was supposed to be admitted but it was pushed back a day and we had to come back to the hospital that night for out patient chemotherapy. We spent the next morning together he was pretty sick vomiting at hotel. I had to leave to go home and be with Aedyn and work. It was really hard to leave him knowing how hard going into the hospital was going to be for him. He got sick several times on the way. Thursday night was the first night we ever spent apart. It's hard to be torn in directions of work, a child, a husband. It's hard to watch Nathan suffer so much and I can not be here every second. Friday he started getting his new regimen of chemo. This time around is a combination of several things and combined they are a great deal stronger therefor harder on Nathan. Five straight days. Saturday when I came back to Houston he was pretty sick. He's lost some weight and is pretty much at this point getting fed through his port. He's eaten a little soup and a bite of applesauce. Gatoraid is about all he's taking in and a few Popsicles. Staying up here Saturday and Sunday it's a lot to take in to watch the slow effects of this transplant preparation. I shaved his hair back at home but what's left is slowly beginning to come out. He's pretty thin and they are constantly coming in doing vitals taking blood doing all kinds of tests. He's having to eat buckets of ice so he doesn't get mouth sores from the chemo. He sleeps a lot. So.......the big day. He's supposed to get his transplant around 11:00. To anyone who doesn't know his donor is a 19 year old kid. How amazing is that! He had to go through a bunch of tests and get a port in his chest as well as be in the hospital for awhile to do this for a complete stranger. I have no words for what that does to my heart. If only more people could be so selfless. I will update after transplant and let everyone know what the process was. Yesterday he slept most of day and he's been sick all day today. I know he's scared and nervous so pray for his strength through the day!!! This has been a world wind of emotions. Being at home is hard, leaving Nathan is hard, leaving Aedyn is hard, not being able to ease his pain is hard. It's funny the little things we don't notice until something like this when I went home I could smell him in the house and his stuff is everywhere but he's not there it sucks! We've watched tv on same channel some and text back and forth or talk on phone anything to feel together. We did our first Skype tonight with Aedyn. That gave me so much comfort and Aedyn was so excited to be able to see Nathan. One week down in this long journey. One week and I'm exhausted. Doing financial paperwork, the short sale on his home, being here for him, the back and forth driving, working, running a business, taking care of Aedyn, housework. No sleep! I hope next week is better. When I type these things and share all this it's to not only TELL of his journey it's to show how going through this with him is. This is the reality of cancer it SUCKS!!!!! When he's home and we have our life back I don't know that I can ever complain again. Getting through this has given me even more strength and I was already a tough cookie and my God what Nathan's been through since he was 20......look out world these tough cookies have lots of life to live!
Pray for strength for him today!

Thursday, September 29, 2011

Transplant is scheduled.

Nathan goes in next Wednesday October 5th for a meeting with his stem cell doctor and will begin a series of scans and test to prepare for his transplant. He is scheduled to come to Houston on October 17th for the remainder of his test and then on the 18th he will go into the hospital to have his port put into his chest. He will be admitted into the hospital on October 19th. He will stay in the hospital doing one last dose of strong chemotherapy that will begin on the 20th and end around the 24th or 25th. His donor is a 20 year old male in another state, so the cells will be flown into MD Anderson around the 25th and he will receive the transplant on the 26th. After the 26th if everything goes as planned he will be in the hospital for 30 days if there is no complications. At that point he will be expected to be in Houston for no less that 100 more days. For several weeks he will have to make daily trips in for transfusions, labs, test, check ups and so forth. If there are no problems and his body does not reject the transplant he could come home some time around February 2012. It's hard to imagine all of this and to grasp all of this. We have not spend a day or night apart and it is going to be a struggle not being there every step of the way. With Nathan not working and me missing work when I am able to as well as me being here at home for Aedyn, it is going to be a struggle for us in so many ways. We feel blessed that he has this opportunity and has a person amazing enough to do this for a complete stranger to save his life, but it is still hard. We will miss Thanksgiving, Christmas, New Years, and so much more. Please send lots of love and good thoughts and prayers Nathan's way he has a battle ahead of him and it is going to be hard on everyone but really hard on him and his body. It is hard to ask for help but when you are left with no choice you have to, so I am asking if anyone out there can help us through this time it is appreciated more than we can ever express. Nathan is completely unable to work and probably will not be able to for around a year after the transplant. I will be missing a great deal of work at the salon and will have hardly any income. On top of all of that we have medical expenses, my travel expenses to be able to be at the hospital with him, and our living expenses at home. If you can donate even a dollar it helps us. We need help or I don't know how we will make it through this. For those that judge the fact I am asking this, put yourself in our shoes it is a very scary and uncertain and stressful time for us and we are doing everything we can. The fact that Nathan has been working when he could over the past year as sick as he has been speaks volumes for his character. He is strong and a true fighter and he is an amazing, amazing man. Keep Nathan in your thoughts through the coming months please. I will update through the whole process for his friends and family to follow. I can not wait for the day we are back on our feet and Nathan can live his life finally, he has been though so much to only be 27. It will be an amazing thing for us to be in a good place to return to others the blessings given to us. Thank you to the amazing young man who is doing this for us its a shame it is anonymous!

Friday, September 9, 2011

Feeling like it's close to an end but it's really just the beginning of something else!

So since I last wrote Nathan has had another round of chemotherapy and we met with the Dr. on Tuesday of this week. He has chemotherapy again on Monday morning. The doctors are continuing the treatment until everything is set up and ready to go for him to go into the hospital for his transplant. He was approved for the transplant so we finally have some peace as far as not stressing about what we would do if he had not been. It's kind of strange how you want to feel happy about the coming remission but at the same time you dread what is ahead. Nathan has been through the transplant process once before, and it was very hard for him, but this time will be much different, and much much harder. Due to the fact that he has a donor this time instead of his own stem cells and the donor is not related to him it makes it a great deal more complicated. Nathan will be in the hospital for a lengthy amount of time and then have to stay close to the hospital until he is in the clear from his transplant. I have been reading up on GVHD, the disease he could develop from the transplant. It scares me so much to know that we have to sit and wait to see if his body can handle this and if his body can not then it could kill him. That is the reality of the situation. Hard to know what to do because if he does not do the transplant his cancer will most likely come back and the doctors say he will be out of options. This is a chance to cure him , prolong his life, save him, if it works. The last transplant was successful he had five years of remission, so I am holding on to hope and faith that this will go smoothly for him. If you are interested in Graft-vs-Host disease I could post lots of links, but easiest way is just google it there is tons of info on the disease, what causes it, as well as treatment of it, risks, and statistics of survivors. Please keep Nathan in your thoughts. He still has a long road ahead that is not going to be easy. I never realized how much of you life is affected by an illness such as cancer. It takes over EVERY aspect of it. It is hard to plan things and hard to spend time just living and being happy because you have to worry about the things going on, the things ahead, finances, being apart from people, the pain, the sickness. It puts a strain on everything and it is the hardest thing I have ever been through and I am not the one who is sick. So unfair to watch an amazing, pure, beautiful person who is so amazing and loving and full of life suffer through this war on cancer!!! On a positive note Nathan had two weeks off from treatment and it has been awesome. He has been to Aedyn's baseball practices, able to go out and eat, able to go in the living room and watch TV, eat dinner with Aedyn and I , basically everything except lay in bed. It's amazing the simple silly things we do day in and day out that we take for granted. Live your life and love every second of it because all the petty crappy things we complain about daily do not mean anything at all!!!!

Saturday, August 27, 2011

Rough two weeks!!!!

The last two weeks have been tough to say the least. Nathan had to wait over 6 hours on last Friday to get his chemotherapy treatment. He got really sick on that round and wasn't really out of bed much except for late Wednesday and Thursday this week. He felt good just to go back and do it again on Friday. He had to go do blood work on Thursday to see if his counts were high enough for the second dose of the chemo. Again a 6 hour wait just to get the results. Then on Friday they only had half of what he needed ready.... a LONG wait again. When the nurse started giving him the second part of the treatment she did not do something right with his IV and the drugs got into his arm and he had a bad reaction. His arm was burning and he had severe swelling. She had to move the IV to the other arm to finish the chemo. After the 3 hours it takes to do the treatment we were then sent to MD Anderson's Emergency Center. We ended up leaving because they said it would be 4 to 6 hours to see a doctor. His arm is hurting him today but last night we did heat compresses and took the swelling down. He is really sick today and for some reason his whole body is in pain. I am sure as the chemo goes on it is just breaking his body down. I thank God we can go through the frustration of the last two weeks and still laugh together and have fun at the hospital together. It takes my mind and his mind off of things. I can not wait to have or normal life back, we have not had that our whole relationship/marriage. I look forward to being able to do things together and watch him play football and play with Aedyn, I look forward to so much. We go back to the doctor on September 6th and I hope we will find out around when he will stop chemo and be ready to do his transplant. Still no news on if he can get it or not from financial department. Please pray insurance approves it, that Nathan's arm gets better, that his pain stops, and that he can eat and get out of bed. Also please pray for his chemo to continue to work! Through it all still smiling..... still laughing...... still loving me and concerned for me! What an amazing person!!!!!

Thursday, August 18, 2011

THE GREAT NEWS!!!!!!!!!!!

We found out Tuesday that Nathan's CHEMOTHERAPY IS WORKING!!!!!! Thank God. Finally after starting all this last May, and the last two things they have tried, we are getting results. He has shown incredible improvement since just two months ago when they did his last PET scan. He will still need to undergo chemo until in complete remission. He is close to the donor stem cell transplant. Here is a link with some great information on stem cell transplantation, also info on how to be a donor, Nathan will need an allogenic stem cell transplant. Basically they look for the closest possible match. His siblings were not a match and we don't have a baby for cord blood so they are going to a donor list and finding a match. Last time we met with his stem cell Dr. she said they had two COMPLETE matches. Great news the closer the match the less chance of complication like Graph vs Host disease, where his body will reject the transplant.
The doctor said they are working on contacting the match they found for Nathan and getting everything prepared. We are dealing with the insurance right now and if they will not approve the transplant we will have to find a way. Not too sure at this time of our options but we will do it somehow! Please pray he keeps getting better, that his donor works out, that the insurance will pay (the hospital financial person we talked to said it cost around 700,000, WOW!!!!!), and pray that everything with the process of the transplant will go smoothly! Everyone's spirits are so high for Nathan now. It is such an amazing feeling, he knows all too well from the first time:) We have been doing a great deal of natural things at home like milk thistle to restore the liver, aloe vera juice (does a ton of things) and anything else I can get him to try:) I believe that a GOOD attitude, mixed with a good diet and anything natural and healthy, good doctors, prayer, and of corse good caregivers ;) LOL , makes ALL the difference. Cancer is draining and it SUCKS but Nathan is a STRONG person.He always kids that he's fine, and that he is superman and in my eyes he IS:D cheZZZZy I know but true! Don't feel like proof reading lol hope this makes sense!