Wow! 2 posts in one week!! Just wanted to post an update and prayer request. On Wednesday we went to our out of pocket consultation at City of Hope. We were first told by the lady at admissions to try to talk to the financial advisor about getting on some kind of program or charity to pay for treatment there. Our original plan was to just get the consultation and take the recommendations to the radiation/oncologist that our insurance does cover. Unfortunately, the financial advisor told us that the type of radiation and the place it would be done at is far too expensive to be able to go on any kind of program. She said our best bet is to do what we originally planned. We were very bummed to hear that because we haven't felt comfortable with the R/O our insurance allows. He was a great doctor and very nice but is not familiar with Jarrod's type of tumor and has only dealt with a couple of cases that had to deal with the spine. I'll come back to this next part after I tell you about our appt.
It was so strange being there at City of Hope--seeing all the people with cancer who have no hair and some wearing face masks. It really hit me being there. I was really creeped out and couldn't believe we actually had to be in a place like that. It made me cry a little. The R/O gave us A LOT of info that we weren't quite ready to absorb. Nothing too bad but it just hit us again about our new reality. We kind of forgot about it since he's been home. We've been so busy with the kids, daily life, therapy, and everything else that we haven't even given thought to the "MALIGNANT" tumor and everything that comes with it. The risks of this or that and the chances of this or that. We were yet again hit by that painful 2x4 of reality. Ew. On the other hand the doctor did seem very positive and gave us the impression that we are on the better side of the scale. We try to remember that part and not focus on all the "what if's." We do understand things could be a whole lot worse but it's just a frightening thing to even have to make that part of our discussions. We'd REALLY like to have treatment there at City of Hope. The doctor we saw specializes in the spinal area and has done it numerous times. He even said that he just saw a patient with a similar story for his 5 year check up and is now doing GREAT. Unfortunately our insurance will NOT or at least HAS NOT given us the approval to go there.
Today we saw Jarrod's primary physician to get a referral for another MRI (to confirm there is no new growth) and a spinal tap (to check if there's anything in the spinal fluid). We told her about our appt and our uneasy feeling about the doctor we would be seeing that our insurance did approve us for. She was concerned about our uneasiness and said that she would talk to the head of the HMO group (? Not sure of the terminology) and make sure we do get authorized for City of Hope. She said she would not stop hounding until everything is all settled with our case and we finally get the ball on the roll. We were so happy to hear that. It was so nice to have someone fight for us like that. Please pray that God continues to direct us. Pray that the primary physician's efforts to get us authorized for City of Hope would be blessed. Pray for comfort as we go through this as it is scary and new for us.
I will keep you posted as to what happens. We should hear by Tuesday. On a very happy note, as some of you saw on my Facebook page Jarrod took some steps yesterday WITHOUT the walker. He walked from one side of the room to the couch, turned around and went back. I didn't expect him to turn around. I thought he'd just plop on the couch but nope, he kept going! To top that off he walked up and down some stairs today at the doctor's office. He passed the handicap ramp and decided to just try the stairs. It was a very exciting moment for us. I'm so proud of his accomplishments this week. This new confidence he has is just BEAMING. I'm so proud of him. He continues pressing on...
:)
Friday, March 23, 2012
Monday, March 19, 2012
4 months
It's been 4 months since Jarrod's surgery. I can't believe that much time has flown by since. I remember before his surgery when we first found out about Jarrod's tumor, I was a wreck. I didn't know how I would cope with everything. My biggest fear had always been something happening to my husband. I never thought that fear would become my reality. You don't think these kind of things would happen to YOU. You can imagine it for other people. It only happens to OTHER people--not you.
When Amariah was born it only got worse. She cried ALL the time. It seemed she never slept. Then Hannah got sick with extremely hugh fevers.Then Hannah stopped sleeping through the night and has been waking up more than the baby. I would pray and pray and pray even more but NOTHING would happen. I got to the point where I was mad at God. I recited his promises in my prayers and challenged Him. Still nothing. I was so upset with him. As if it's not hard enough managing our new life with Jarrod in his position, things had to be more chaotic with a newborn that screams and cries all day and night and a whiney needy toddler who won't sleep at night anymore. I've been drained--almost empty. I kept thinking I would die of exhaustion and irritability. Then one night when I woke up to tend to Hannah's cries and feed the baby, I realized I was filled with peace. I was waiting for a bomb to slip out of my mouth or me pulling out my hair but it didn't happen. I had a peace that I just cant explain. Days went on and that peace continued. It was still difficult don't get me wrong. I was just experiencing that common verse that every Christian recites but you never really "feel" until you go through a trial you can't manage: "Philippians 4:7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." I still want to pull my hair out at times or crawl in a hole and just cry but that special peace helps me get through the day or gets me through seconds and moments at a time throughout each day. Some people will use that "Christianese" talk and tell you "everything is going to be alright because Jesus loves you." Honestly that bugs the heck out of me because sometimes it's not going to be alright and you do struggle but that's when you come to the end of yourself and Christ can come through. Sometimes He does make things all better in an instant but sometimes He let's us wait and just gives us the strength we need to just get through that day. After my long battle with God and my "Why are you being so mean?!" convos with Him, I've come to fall more in love with Him. I see Him working even if it is quietly and not so "show-offy." Just last week I had one of the worst nights and mornings. The social worker from Jarrod's rehab group (which I'll tell u about later) was to show early that morning. I wanted him to cancel but she wouldn't. When she came she told me to do what I wanted--run, shop, nap, whatever while she helped Jarrod watch the girls. I debated whether I should sleep or run. I felt I needed to run off my frustrations. I ran the trails by my house. I haven't ran in like 7 years so I was wearing out fast. I stopped midway and there just so happened to be a nice little bench underneath a large shady tree. I sat to catch my breath and just cry out everything I had been feeling. I turn my head and what is laying beside me? A little orange Gideon BIBLE! I thought "ok God, you're funny." I opened it up and there's a topical index. I looked up "stress" and turned to the first verse it brought up and read the whole chapter. The whole chapter spoke straight to my heart but the part that hit the most was the verse that has been popping up everywhere and blessing me which is "Psalms 27:13-14 I would have lost heart, unless I had believed That I would see the goodness of the LORD In the land of the living.Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!"
I was so refreshed! I had such a nice intimate time with the Lord. He totally rejuvenated me and gave me that umph I needed to keep me going--and not just going but going with joy. It still is challenging. He hasn't taken away the problems but He has helped me through them and through it strengthened me and gave me ENDURANCE.
Now onto my update...
Jarrod has an appointment with City of Hope this Wednesday. We didn't have the $700.00 at first but God came through and gave us more than we needed. The person that passed it along to us from whoever it was from said "Don't doubt your God." Also Jarrod is now seeing a different rehab group. They specialize in neurological cases. They send out a group that consists of a physical therapist, occupational therapist, and a social worker. We LOVE them! They have been pushing Jarrod and really working him hard. It's built up his confidence and endurance. I see a new man. He became stagnant after awhile and almost depressed because of it but with this new team they have totally brought him back up. He is walking so much more now (with the walker). They're also doing things like taking him to the grocery store and teaching him to use the cart and go shopping on his own. When they came back they even had him put the food away. Tomorrow they will be taking him to the gym to show him exercises he can do other than swimming. We're so excited about his new level of progress and mind set even.
I took Amariah to the doctor to find out about her crying and throwing up. The doctor prescribed Zantac and since then has been crying a lot less. She sleeps between 4-6 hours at night. Hannah still has been waking up about 3 times throughout the night crying. We can't figure out what is wrong nor how to stop it. She's been a perfect baby since she was 7 weeks old. Always preferred to be by herself in her crib. Now she can't be alone at night. I even made a little set up for me beside her bed so when she cries at night I just go there and stay til she falls asleep again and I go back to my room. Pray for her. We've tried everything. We've tried music, a night light, I read to her and pray with her, put up pictures of us by her bed. Nothing has worked yet. Pray for her and us about this. We don't believe in sharing the bed with our kids nor separating and having me sleep in her room.
Other than those few bumps we are doing well. A lot of people seem to think we should be staying home all day everyday but we've done the opposite. We're back at church. Jarrod's been going to men's bible study. We all go out grocery shopping, take our girls to the park, hang out with friends--individually and together, go to restaurants, etc. We're just enjoying this season of all of us being together and taking advantage of it while we can. Jarrod is such a hard worker and provider that now that he's being forced down we have to soak it up. I know the minute he's better he'll be back to working hard for his family. That's just the manliness in him.
OH! And we just celebrated our 5 year anniversary. Again God provided and we were blessed with a nice little getaway to a very nice hotel in Dana Point. We stayed at the Laguna Cliffs where we had an ocean view, free valet, and free parking (which is normally an outrageous amount of $29.00!). We really wanted to just sleep the whole time but we went out for a nice dinner and then dessert at their "lounge." It was so wonderful. We reconnected and got to spend quality time together. Even though we see each other everyday we don't get that quality time because we're so busy with rehab, the kids, phone calls, and the regular things that need to get done. I felt like we were dating again with that mushy gushy feeling.
Hopefully it won't be so long before I can update again. Thank you to the ones who are still praying, still thinking about us, still sending us gifts and diapers, still blessing us financially, and still caring.
When Amariah was born it only got worse. She cried ALL the time. It seemed she never slept. Then Hannah got sick with extremely hugh fevers.Then Hannah stopped sleeping through the night and has been waking up more than the baby. I would pray and pray and pray even more but NOTHING would happen. I got to the point where I was mad at God. I recited his promises in my prayers and challenged Him. Still nothing. I was so upset with him. As if it's not hard enough managing our new life with Jarrod in his position, things had to be more chaotic with a newborn that screams and cries all day and night and a whiney needy toddler who won't sleep at night anymore. I've been drained--almost empty. I kept thinking I would die of exhaustion and irritability. Then one night when I woke up to tend to Hannah's cries and feed the baby, I realized I was filled with peace. I was waiting for a bomb to slip out of my mouth or me pulling out my hair but it didn't happen. I had a peace that I just cant explain. Days went on and that peace continued. It was still difficult don't get me wrong. I was just experiencing that common verse that every Christian recites but you never really "feel" until you go through a trial you can't manage: "Philippians 4:7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." I still want to pull my hair out at times or crawl in a hole and just cry but that special peace helps me get through the day or gets me through seconds and moments at a time throughout each day. Some people will use that "Christianese" talk and tell you "everything is going to be alright because Jesus loves you." Honestly that bugs the heck out of me because sometimes it's not going to be alright and you do struggle but that's when you come to the end of yourself and Christ can come through. Sometimes He does make things all better in an instant but sometimes He let's us wait and just gives us the strength we need to just get through that day. After my long battle with God and my "Why are you being so mean?!" convos with Him, I've come to fall more in love with Him. I see Him working even if it is quietly and not so "show-offy." Just last week I had one of the worst nights and mornings. The social worker from Jarrod's rehab group (which I'll tell u about later) was to show early that morning. I wanted him to cancel but she wouldn't. When she came she told me to do what I wanted--run, shop, nap, whatever while she helped Jarrod watch the girls. I debated whether I should sleep or run. I felt I needed to run off my frustrations. I ran the trails by my house. I haven't ran in like 7 years so I was wearing out fast. I stopped midway and there just so happened to be a nice little bench underneath a large shady tree. I sat to catch my breath and just cry out everything I had been feeling. I turn my head and what is laying beside me? A little orange Gideon BIBLE! I thought "ok God, you're funny." I opened it up and there's a topical index. I looked up "stress" and turned to the first verse it brought up and read the whole chapter. The whole chapter spoke straight to my heart but the part that hit the most was the verse that has been popping up everywhere and blessing me which is "Psalms 27:13-14 I would have lost heart, unless I had believed That I would see the goodness of the LORD In the land of the living.Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!"
I was so refreshed! I had such a nice intimate time with the Lord. He totally rejuvenated me and gave me that umph I needed to keep me going--and not just going but going with joy. It still is challenging. He hasn't taken away the problems but He has helped me through them and through it strengthened me and gave me ENDURANCE.
Now onto my update...
Jarrod has an appointment with City of Hope this Wednesday. We didn't have the $700.00 at first but God came through and gave us more than we needed. The person that passed it along to us from whoever it was from said "Don't doubt your God." Also Jarrod is now seeing a different rehab group. They specialize in neurological cases. They send out a group that consists of a physical therapist, occupational therapist, and a social worker. We LOVE them! They have been pushing Jarrod and really working him hard. It's built up his confidence and endurance. I see a new man. He became stagnant after awhile and almost depressed because of it but with this new team they have totally brought him back up. He is walking so much more now (with the walker). They're also doing things like taking him to the grocery store and teaching him to use the cart and go shopping on his own. When they came back they even had him put the food away. Tomorrow they will be taking him to the gym to show him exercises he can do other than swimming. We're so excited about his new level of progress and mind set even.
I took Amariah to the doctor to find out about her crying and throwing up. The doctor prescribed Zantac and since then has been crying a lot less. She sleeps between 4-6 hours at night. Hannah still has been waking up about 3 times throughout the night crying. We can't figure out what is wrong nor how to stop it. She's been a perfect baby since she was 7 weeks old. Always preferred to be by herself in her crib. Now she can't be alone at night. I even made a little set up for me beside her bed so when she cries at night I just go there and stay til she falls asleep again and I go back to my room. Pray for her. We've tried everything. We've tried music, a night light, I read to her and pray with her, put up pictures of us by her bed. Nothing has worked yet. Pray for her and us about this. We don't believe in sharing the bed with our kids nor separating and having me sleep in her room.
Other than those few bumps we are doing well. A lot of people seem to think we should be staying home all day everyday but we've done the opposite. We're back at church. Jarrod's been going to men's bible study. We all go out grocery shopping, take our girls to the park, hang out with friends--individually and together, go to restaurants, etc. We're just enjoying this season of all of us being together and taking advantage of it while we can. Jarrod is such a hard worker and provider that now that he's being forced down we have to soak it up. I know the minute he's better he'll be back to working hard for his family. That's just the manliness in him.
OH! And we just celebrated our 5 year anniversary. Again God provided and we were blessed with a nice little getaway to a very nice hotel in Dana Point. We stayed at the Laguna Cliffs where we had an ocean view, free valet, and free parking (which is normally an outrageous amount of $29.00!). We really wanted to just sleep the whole time but we went out for a nice dinner and then dessert at their "lounge." It was so wonderful. We reconnected and got to spend quality time together. Even though we see each other everyday we don't get that quality time because we're so busy with rehab, the kids, phone calls, and the regular things that need to get done. I felt like we were dating again with that mushy gushy feeling.
Hopefully it won't be so long before I can update again. Thank you to the ones who are still praying, still thinking about us, still sending us gifts and diapers, still blessing us financially, and still caring.
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