Tuesday, October 13, 2009

Another Day

We started our day again like normal at 7am, Eric is sleeping while he gets his treatments and IV meds. His white cell went to 5.4 and his platelets went up on their own to 67 (very good-Eric for the past 2 years has been only 8 to 15 is all) and his red blood cells went to 3.8 hemoglobin is good at 9.6. That is great news, Eric's weight he lost another 2 pounds today from yesterday.

The doctor has us start some Carnation Nutrition Drinks and he tried one this morning but could only drink about half and felt a little sick so we took a break. We will keep trying those a little more each day. He will only drink for me water and we try to make sure he is getting at least 3 liters of water each day for his kidneys due to his kidneys levels are a little high right now and all this chemo, medications and antibiotics can hurt your organs.

Eric is a little less today than yesterday, more sluggish and tired. So today is a little harder but he will be OK just more rest. We are so thankful for the blessings the Lord is providing us, the tender mercies. We know he is constantly with us and we feel his comfort daily, hourly and sometimes on the hard days every minute. I am so proud of Eric- it is hard to go through this and keep a positive attitude and he is doing just that. He is a strong guy and has been through so much- the Lord has a lot planned for him and he has over come so many obstacles with the Lord.

Monday, October 12, 2009

One day at a time..

Sorry for the few days not updating it's hard when I do not have Internet at the apartment and then when we go to the hospital sometimes we are so busy all day I don't get a chance to update the blog. As I mentioned we come to the hospital everyday 7 days a week at 7am we have to start that early for the long days- they do Eric's blood work/ labs then we get checked into a hospital room outpatient for the day. We are there usually anywhere from 6-8 hours sometimes longer if Eric needs red blood transfusions or platelet transfusions.

Eric is doing ok, he of course it happy to be outpatient but still pretty weak. He gets frustrated cause his mind wants to do more than his body will let him. He gets pretty tired and exerted easily. He takes his pills and then needs to lay down, he gets up to use the restroom needs to lay down. He feels about 10% of his normal energy and he gets frustrated with that cause anyone who knows him, Eric is a mover. He doesn't like to sit, he wants to always be doing something. Even when he has down time or we are on a vacation he is thinking up fun things to do with the kids or the family so we are always active. He hates TV, never has watched it much. He just a hands on busy guy and so this sitting and resting is very hard for him and he gets very anxious.

He has a hard time sleeping at night due to his medications and treatments he gets all day make him tired and so he sleeps alot in the day during them but then he always feels tired but when it is time to go to bed he can't sleep so he gets up alot at night. His white cell count is good today it is at 5.5 and his red cells are 3.8 and his platelets are 67. The last few days Eric's red cells and platelets have went up on their own without having to get transfusions, that is good another sign the donor's marrow is grafting and becoming Eric's. Eric has not had a transfusions for a few days now, that has not happened in years!

Right before his transplant he was transfusion dependant and getting them every other day to stay alive and now only every couple days sometimes a little longer. We are truly blessed to have him on an upward swing right now, we are grateful to the Lord and hope this continues. It is a slow process but we know he is climbing that hill and getting closer and closer to the top- to coming home and being a family again with the kids.

We love and miss the kids so much!! They are doing so well and we are proud of them and how responsible they are. Sometimes I worry so much about them and if they are ok, if they really are getting everything they need but I know we have alot of wonderful family and friends helping us and we appreciate that so much! We continue to ask for prayers on Eric's behalf , to bless his doctors and bless his body for the recovery and grafting process. The Lord knows us and our paths we are to take, continues to guide us. He knows our desires and needs and he will provide with what his will is, we know their are continued miracles and tender mercies to come as we have already seen. We are humbled and grateful and willing to follow his light, there is power in prayer. We have felt and seen that on so many occasions.

Friday, October 9, 2009

Released from the hospital...

Sorry for the delay- Eric was released lat afternoon around 3pm and we have no Internet at our apartment. So when I come to the hospital each morning I will update the blog then. Eric was released yesterday and as you can imagine was so EXCITED!! Even though he was released we will be coming here early in the morning every day for 8 hours for all his treatments, doctor appt.s and blood transfusions. So pretty much we will be just going home to sleep at night to the apartment but that is good enough for us.

Eric said it felt so good to be part of the world, feel the sunshine, breeze outside, seeing people, cars, life! We also have a home health nurse who comes each night. She came to teach me how to do Eric's IV fluids and IV antibiotics that run through him through the night. Then at 6am and 10pm I have to hook up his IV antibiotics treatments so even though we are out still pretty busy. Eric had such a good night sleeping, he was up a little bit but said it was so much better than the hospital.

It feels so good to have Eric out of the hospital but it is a little different not going home and seeing the kids just coming home to the apartment, much like when we were first married. We are blessed to have Eric released and continue to ask for constant prayers for him to continue to progress upwards and his strength to get better. Still not eating anything only will drink water but since we are running the IV fluids in him they say it is ok. They weighed Eric this morning and he has lost now a total of 36 pounds. I was not as worried at first because all the prednisone steroids he has been on the last 2 years he gained weight on 30 pounds from his normal weight. Now though he is getting a little to unhealthy skinny, looking sickness skinny and I am worried about that. They have talked to us about possibly putting him on IV feeding called TPN if he loses much more weight.

I continue to pray to the Lord for his strength, guidance and protection. We have a long road still ahead and I know maybe we have traveled a few miles into that but we certainly are not out of the woods yet.. We know with continued faith in the Lord all things are possible.

Wednesday, October 7, 2009

Good day!!! :)

It has been a good day and past 24 hours!! YEAH!!! Eric has been sleeping better, no fevers and his breathing good. They took Eric down this morning for a chest x-ray to see if his pneumonia and infection on his lungs has improved. Eric and I found out some AMAZING GOOD NEWS! If Eric goes all day today and through the night still with no fever and keeps doing good he can get DISCHARGED FROM THE HOSPITAL INPATIENT and GO TO OUR APARTMENT TOMORROW!!! WOW- YEAH!!!!

Even though he would go to outpatient and we still have to be here within 10 miles and stay in Houston, TX for another 72 days which means we will not be home until the week of Christmas around December 18th , 2009- we will take this! We will be coming here to the hospital everyday 7 days a week for 8 hours all day for his appointments and IV transfusions of some of his antibiotics and medications, blood transfusions. So really we will still be here at the hospital all day and then just go home to the apartment at night to sleep but to Eric that is SO WORTH IT! The freedom to walk outside, feel the sunshine on his face, be part of the world - that is so exciting!

I am kind of scared a little, we have fought so long and hard to get out of the hospital. Eric has been in here 7 weeks at the end of this week!! It is weird, it's kind of like that feeling when you have your first child and you want to go home but then when they come tell you they are discharging you and you think " Are you sure I am ready to go home? You think I can take the baby home and be okay?" It's a little weird you then start to worry and think " Am I really ready to go home?" There are so many worries, precautions and limitations that Eric's life depends on so I find myself thinking " Am I going to be able to care for Eric good enough and keep him safe? " With the Lord's help I know we will get through to this next phase of our journey.

It's overwhelming all the things a bone marrow transplant patient has to worry about. I have had to go to these discharges classes and get signed off on all things to make sure I understand what we need to do and can't do for Eric to survive this and to make sure we are aware of the signs of rejection and GVHD (Graft Vs. Host Disease). No crowds, stores, church any where there are groups (well that's not such an easy task now is it), no eating out at fast food or restaurants, no pets or flowers or plants near Eric (wow- I love flowers as you all know- I can have them outside just not inside the home with Eric), no buffets, no fruits, no vegetables, all foods have to be cooked at a certain temperature, only meat cooked well, well done, only things pasteurized, no flying or diving (like we were going to attempt that), no swimming, no sun exposure, no wearing contacts only eye glasses, only wear long sleeves, wear mask and gloves at all times, no fevers above 100.5 OR back into the hospital. WOW! It can get all so overwhelming but some of this we have already been used to before since this is Eric's 2ND cancer and he has been critical immune suppressed and ill for the last 2 years. I asked the discharge nurse how long we will have to worry about these things and take these pre-cautions and she said really probably forever but most critical time is the first year and then after that some of these pre-cautions will decrease or go away but some will be a life change as a transplant recipient.

Even though there are all those things to worry about and restrictions it is a blessing to be alive!! To be able to say that he is grafting and that we have made it through the first hurdle of our journey. Bring on the second one -right? That means we are one step closer to coming home to our children and being a family again! We prayed today with the hospital Chaplin in Eric's room, we thanked the Lord for his love, strength and guidance through our journey and thanked him for this next step in our process. We thanked him for all our blessing and knowing we are not over the journey or trial yet and still more bumps and hurdles to come but thankful for it is with him we can bare all things!! How blessed we are to have the Lord and church in our lives as a constant compass and reminder of what life is all about and what really matters. Again, I find myself thinking of the words of " I Stand All Amazed".

Tuesday, October 6, 2009

Slower Day

Eric has had a slower day again today. Really low on his energy and sleeping most the day. Today is day 27 from transplant day and Eric's white cell went down a little to 5.0 which is fine the doctors say that he will roller coaster on grafting on day go up and then go down the next just as long as we continue to see up wards direction and not big huge jumps up or down we are fine. His red cells and platelets are still bouncing low and he then gets transfused and he goes up for a few days. They say that as well over time will get better the more he grafts.

The team of doctors and infectious disease doctors came in and said that they have placed Eric on 4 broad based anti fungal infections medicines and antibiotics trying to cover everything possible while the culture still is being processed. It has not shown them any direct fungal infection name so that they would have a better idea how to treat Eric. They said that only 30 % of the time do they ever get back a direct answer so they usually place patients on antibiotics like they have already done for Eric.

Eric ate a bowl of dry Rice Krispies Cereal and drank a couple of sips of Apple Juice so that was good today. However tonight he does not want anything fighting the nausea still. They are trying to switch 2 of the IV antibiotics and fungal medicines to pill form and see how Eric responds so that he would only have 2 IV meds but they are concerned that his fevers will return and pneumonia and fungus infection in his lungs will increase again so they are watching him closely.

Eric did walk about 4 times today for me so that was good but today he was at a slower pace, really weak ad sluggish. I asked him if he feels like he felt yesterday and he said no today he was more tired and weak. He keeps telling me he feels like he has lost muscles in his legs and body however the doctors tell me they monitor that and the results on the tests show he is fine.

We miss the kids a ton, it seems like they were only here a day or two despite it was really 5 days. I wished Eric was better when they came, he really tried hard to be more awake and not so weak but turned out he really couldn't control it. I know the kids understand though, it was great just to have them here and see him and Eric see them. I hope it gave Eric a new boost of energy and reminded him why he is fighting so hard to stay alive! Eric and I were praying together last night and usually I have been saying the prayers out loud due to he has been so weak. It was a very tender moment to hear Eric although weak and hard to speak out loud thank the Lord for all has done for us, for helping carrying him through this and asking the Lord to continue to protect me and the kids. He has always worried about us more than himself, I think that is one of his greatest qualities! He has many- that is just one of his!! I am so blessed to have been married to him for 17 years and the best part is I fall more and more in love with him each day. He is the truest form of courage to me, an example to the kids and I and I have always known how strong he is. He is and will always be my best friend and eternal companion to whom I am forever grateful for teaching me the true meaning of faith and love!

Monday, October 5, 2009

A little improvement...




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Eric has done better today despite last night he was up all night walking around couldn't sleep. They gave him some medication for his anxiety but it made him sleep alot during the day and so he was wide awake at night. They have decided to decrease the anxiety meds and only give half the amount at bedtime hopefully that works.

No fevers still which is good they think the antibiotics have helped that, we hope when they do another x-ray it shows it's helping the infection and pneumonia. Eric is walking alot more today and that is always good, he is walking more faster and seems to not be so weak and slow today! :) Eric has earned all the maxium bandanna's so they gave his a "ALL TIME M & M Mover Award" he received a t-shirt that says " I Am A Bone Marrow Transplant Survivor". Pretty cool, huh? HAHAA!

I am posting a picture of Eric's door showing all his paper bandanna's and a few extra M & M's and then he has earned extra totaling 5 bandanna's and tied them all on his IV pole as his "Badge of Honor" I also posted a picture today of Eric sleeping, he has lost alot of weight total so far since he entered the hospital is 28 pounds! WOW!! He is still not eating but at least drinking alot of water and they also keep him pretty pumped with IV fluids.

General Conference was really uplifting, it seems I always feel like we are so spiritually starving then by the end of General Conference weekend we are feed so much spiritually and we have a new found boost and energy to keep on going. Back home in Utah we take for granted that we just turn on the TV to watch conference but outside of Utah down here in Texas I had to watch it on my lap top via Internet an hour delayed. I was able to watch all of Saturday;s and Sunday's both sessions and it was very rewarding. on Saturday's session the choir sang Eric's and my favorite song " I Know That My Redeemer Lives" that was so beautiful as well as many other songs. I was reminded of how much our ancestors went through and felt as if I can bear this burden and trial, others have done so much more. I am so grateful for the scriptures and the comfort of turning through the pages and reading such inspiring scriptures that seem to be talking directly to me. We are very blessed and I hope to do what the Lord wants me to do so that when I am judged for my actions he know that I have done good in the world.

Sunday, October 4, 2009

A little better today...but sleeping alot

Eric is doing a little better today, but he is very tired due to not sleeping much for few nights prior. He has been placed on these additional antibiotics to hopefully help the pneumonia and fungus infection on his lungs. He is breathing alot better today has not had the oxygen on today - that is good. His fever broke and went away last night and so far so good, it has not returned.

Eric seems to have better spirits today as they have moved Eric into a new room G1158 right next door. It is alot bigger, more windows, more sunlight- they wanted to do this for Eric since he has been so anxious and sick of being here. They felt if he had a better view and more windows it would brighten his spirits. I think this has been good, he seems better. It reminds me of a song I love and have listened to alot before about a cancer patient getting assigned a room. It is called "Room with a view"
Here are some of the verses that I think of often:

They gave you a corner room on the fifth floor, they said the words like they were candy to a kid in a store
Like a King you would lay in your bed so steadfully, so thankful they gave you a room with scenery
You always were so healthy, so full of life! So seeing you so helpless - just doesn't seem right
How you kept your head so high I will never know, I guess you knew you would have a better place to go.

I agree when you are in a hospital, fighting for your life you really learn to appreciate so many things. The simple things that mean so much, it has been a true humbling experience. I love music and always have. Music for me is an outlet and singing alot when I was younger it would make me feel so much better, now I do not sing as much but love to listen to music to get through life's trials. One of Eric's and my favorite song is "I Know That My Redeemer Lives" I love this song, it brings us such comfort.

A song that I listened to alot is called " Just Like He Said He Would":

I know you can't see beyond the problems of today, you feel you are losing heart- hope is slipping away
It's darkest just before the dawn, but his mercy is in the sun rise of another day
You can make it through the night...
Just hang onto his promise, that you're not in this alone
And trust the things that you can't see, to the one whose in control.
He's in control.....
And just like He said he would, he'll make a way when there is no way at all..
You'll never fall, if you only believe that just like He said he would-
He'll carry you when all your strength is gone, He'll always love you...
Just like He said he would.