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oh how he loves us!!

PRAYER WORKS!!!! The same day that Gray woke up so upset and so sick and we asked for your prayers, God touched Gray’s little body giving him energy AND an appetite!! He ate lunch and played with his toys!! Something usually taken for granted, the simple fact that Gray was able to keep food down and had the energy to sit on the floor and play trains is a miracle!! We are so thankful!! It gives us the hope to walk through even one more day when we see our baby boy doing “normal” things. It’s refreshing. Even as our world continues to swirl around us and our days are unsure we can still see our three-year-old little man somewhere inside a sick body. We took Gray back to the hospital on Friday for another round of blood tests to see if he is up for his surgery scheduled for Monday. While his blood counts are still climbing they are doing so very slowly and so Gray’s surgery has been pushed back yet again. He is now scheduled for surgery on Thursday, February 3rd. We hope and pray that this date holds. We assume that Gray’s blood counts aren’t bouncing back as quickly this time because of his RSV. His little body is doing its best to fight and keep up but sometimes it’s just too much to handle. Please continue to pray for a healing in Gray’s body, for his blood counts to recover so he has the health to undergo surgery and for the health of our entire family. Seth, unfortunately, came home sick from school on Friday and while we are all feeling a bit better we just can’t seem to kick this flu/cold. We’re praying for health, rest, peace and energy. While caring for ourselves and most importantly for Gray, life continues to move forward and we all have a very busy couple of months ahead of us with work and statewide youth events. While we’re still balancing it all right now it’s not easy. Rest would be beyond helpful at this point. Sigh. We’ll keep you posted on Gray’s surgery date. Thank you all for sticking with us and offering up your constant prayers! You can’t know what it means to our family!

“Therefore let everyone who is godly pray to you while you may be found; surely when the mighty waters rise, they will not reach him. You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.” Psalm 32: 6-7

by HIS stripes

After Jill tested positive for the flu, the doctor’s not only prescribed her medication but also gave Seth a preventative medication and tested Gray, just in case. Gray’s test results took about 24 hours to come back and when the nurse called she told us he didn’t have the flu…BUT he tested positive for RSV. Devastating. The nurse told us that they want to do their best to treat him at home and unless his fever reaches 101 they won’t admit him to the hospital. So, for now, we have Gray at home. His cough sounds awful, he’s throwing up and he just lays in bed watching movies. He’s also very emotional and gets angry very very easily. Which, if we’re honest, could describe any member  of our family at this point. Gray isn’t sleeping and so therefore none of us are. We are so far beyond exhaustion right now that we would welcome plain ol’ exhaustion! Unfortunately, the fact that Gray has RSV could easily postpone his Monday surgery date even further. The only chance he has of keeping his scheduled surgery is if he is completely well by Friday, when he goes in for more blood tests. Sigh. We never thought we would be looking forward to a surgery but at this point we just want to “get the show on the road” so to speak. The delays and subsequent infections and family illnesses are more then anyone should be asked to handle. We are simply desperate to get this tumor out of our little boy and to move on with his treatment, each day putting us one step closer to a healthy family. Please pray for health in our home. It may not seem like we’re asking for much when we ask for your prayers but your pleading before the Lord is the most help you can offer. Honestly. Right now, Gray can’t be around anyone and we are trying to keep him as free of unnecessary germs as possible. We also don’t want, or need, anyone else in our family to get sick. It complicates our care for Grayson and makes day to day life just that much more difficult. Healing Lord. We need your healing hand to touch our family. Please bring rest to our home.

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.” Isaiah 53:5

sigh.

After Gray’s CT Scan and blood work last week, we were scheduled to return several days later for a follow up blood test because Gray’s counts were so extremely low. In order to keep his surgery date, Gray’s blood counts needed to increase dramatically. Friday, we went back to the hospital for his follow up blood test and unfortunately the news wasn’t good. Not only were Gray’s overall blood counts still way too low but his platelet count was alarmingly low as well. They decided to go ahead and keep us in the hospital for the day and “give” Gray platelets. It wasn’t a transfusion, they didn’t remove anything from Grayson, they simply put more platelets into his blood. Even as the nurse performed the platelet addition she didn’t sound too optimistic that Gray’s counts would be high enough to follow through with his scheduled surgery, but we had to have hope. After a long day in the hospital Friday, we were scheduled to return yet again today for more blood tests. During today’s visit they checked Gray’s levels and while they have gone up quite a bit they are nowhere near high enough for him to have surgery. At this point, Gray’s blood isn’t able to clot on its own so surgery is obviously out of the question! As of now, Gray is scheduled for surgery next Monday, January 31. While we’re not looking forward to his surgery we are eager to go ahead with it. It’s emotionally draining to prepare yourself for something as big as “surgery to remove a tumor” and then have it rescheduled at the last minute. Plus, we’re just ready for this cancer to be out of our baby’s body! We really didn’t need anything else to make today worse but, unfortunately, it was made worse by Jill getting sick. She wasn’t feeling well this morning and so went to the doctor and was told she has the flu. She IS able to stay in our house with Gray but she was advised to “stay away from him as much as possible”…as you can imagine, that’s nearly impossible!! Please just pray for the overall health of our entire family. Continue to pray for Gray’s healing, pray that Jill will be well and pray that no one else in our home gets sick. We don’t have the time, energy or emotional capacity to deal with anything more right now. Jill needs her strength and energy to return and we simply need one normal, drama free, health problem free, chaos free day for our family. Also, please pray that during this week we can again prepare ourselves for Gray’s surgery. We need peace. Just peace.

In light of a not-so-funny day we wanted to share a very funny picture of Gray! Gray is performing his own medical procedures on his toys! Here he is about to access Buzz Lightyears port with a needle! If you had asked us six months ago if we would find it endearing to see our three year old playing “cancer patient” with his action figures we would have been appalled! But after so many long days, even longer nights and endless procedures and surgeries any form of play is worth the memory! Gray’s smile can still light a room and never fails to melt our hearts.

“The salvation of the righteous comes from the Lord; he is their stronghold in time of trouble. The Lord helps them and delivers them; he delivers them from the wicked and saves them, because they take refuge in him.” Psalm 37:39-40

whirlwind

It was a long day but we can’t say that it was a bad day, which is quite a statement after the last couple of weeks. Today, Gray had a CT Scan to check the progress of his shrinking tumors and to schedule surgery. We arrived at the hospital at 10AM, two hours before his scheduled scan, so that Gray had plenty of time to drink the contrast that is required for all his tests. This “contrast” tastes really gross, obviously, because it is a struggle to get Gray to swallow it. The hospital was running a bit behind, but they finally called Gray in for his CT Scan. It was a nightmare. Gray freaked out! They ended up sedating him, though, and we made it through. Gray also had blood work done again today. Then the waiting began. It’s beyond nerve racking waiting for such life changing results. Our every breath hangs on what the doctor may or may not say. When the doctor finally came in we were prepared to hear whatever the news would be. In the end, she delivered overall good news! Gray’s tumors have continued to shrink! We were ecstatic! Unfortunately, Gray’s blood test results weren’t so great. His counts are down to almost 30! Meaning that we went straight home from the hospital and Gray cannot be around ANYONE! Gray also got another nose bleed at the hospital today. Overall, though, of all the news we heard we couldn’t be happier to know that Gray is still responding well to his chemo treatments. While we sit at home this evening with one weight lifted, and couldn’t be more grateful for that, we are also bearing a new weight. As the doctor delivered the good news of Gray’s tumors she also went over Gray’s aggressive treatment plan for the next few months. Gray has to go back to the hospital on Friday for more blood tests and is scheduled for surgery on Tuesday. The doctors are still telling us they will do their best to remove as much of Gray’s tumor as they can. Please continue to pray that they can remove all of it! Including the portion around his aorta! We know and believe that God is bigger then any tumor, any cancer and any obstacle the doctors deliver news of! After Gray’s surgery he will be kept in the hospital for a week to recover and then they will go ahead and keep him for his sixth round of chemo. This puts us in the hospital for about two weeks. Following his last round of chemo, Gray will be allowed to go home for a week or two and then will be re-admitted for his 30 day stem cell transplant. We also covet your prayers about the transplant. It’s such a long stay in the hospital and while we have so much help from family and friends it will still be a rough time. We ask for your prayers for strength in our family and also that the transplant takes the first time. If for some reason it doesn’t work Gray would have to stay for another 30 days. We can’t and won’t even think about the possibility of a 60 day hospital stay if and until that time comes. Gray’s treatment plan continues from there but the stem cell transplant is as far as we have the energy to think about tonight. We have so many prayer requests right  now. We need peace in our family, especially during the periods we will be spending apart. We desperately want to make sure that Seth has understanding during this time and that he feels connected and loved each and every day. We also simply need the emotional endurance to survive the rest of Gray’s treatment. The constant and ever changing schedule of Gray’s treatment, the unexpected late night hospital visits, the daily shots at home, no sleep and an emotional three year old accompanied with normal life and the normal routine of cooking, cleaning, homework and coveted infrequent quiet time…it’s enough to drive you crazy. If there’s one thing cancer forces you to learn, whether you like it or not, it’s that you have to take one day at a time. You literally have no choice. Plans change daily, hourly and sometimes in a split second! Sigh. Thank you to everyone who has prayed without ceasing and to those who have called, sent cards and even cooked meals. Tonight, no matter how much physical rest we get, we rest on our faith, in our friends and family, in your prayers and in the smiles of our two boys…

“That day when evening came, he said to his disciples, ‘Let us go over to the other side.’ Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, ‘Teacher, don’t you care if we drown?’ He got up, rebuked the wind and said to the waves, ‘Quiet! Be still!’ Then the wind died down and it was completely calm.” Mark 4:35-39

midnight madness

Gray was released from the hospital Thursday evening, finally hydrated and eating and drinking on his own. We enjoyed just over 24 hours of semi-normal family time in our own home and then cancer reared its ugly head yet again. Over the weekend, Gray had 6+ nosebleeds. We dealt with the first handful of nosebleeds like any parent would handle a three-year-old with a nosebleed but unfortunately the last nosebleed would not stop. We finally called the doctor and he told us to take Gray to the Emergency Room. We left home at about 11PM and after arriving at the ER the doctor’s ran tests only to find that Gray needed a blood transfusion. He was admitted to the hospital and we were finally placed in a room at about 1AM this morning. It was a rough night. After having blood drawn, accessing Gray’s port and undergoing a blood transfusion in the wee hours of the morning we were all exhausted, physically and emotionally drained and just plain ol’ upset. No one slept. It’s now 10AM Monday morning and the doctor’s are running follow up blood tests to see if Gray’s blood transfusion worked. If it did then we will be released and allowed to go home. Unfortunately, we also learned during our visit to the hospital that Gray’s blood count has dropped to around 115. He has NO immune system right now. While we are eager to get home we can’t help but know that Gray has been scheduled to return to the hospital tomorrow for his next CT Scan. So, no matter what happens today we will be home for less then a day before returning to the hospital for more tests and to schedule surgery. Tomorrow’s scan will tell us if Gray’s tumor has shrunk and if his cancer has spread. As you can imagine, we are beyond nervous about tomorrow. What we truly need for today is to nap, relax and spend the rest of the day together…AT HOME!! Thank you to all who prayed for Gray and our family overnight. Please continue to pray for us today. We all need rest. We all need peace. We all need strength.

“In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety. Listen to my words, Lord, consider my lament. Hear my cry for help, my King and my God, for to you I pray. In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.” Psalm 4: 8 – Psalm 5:3

it’s the little things in life…

GRAYSON IS HOME!!!!!!! After being re-admitted to the hospital Sunday Gray is finally home again Thursday night!! During his stay in the hospital, Gray’s doctors ran tests to try and figure out why he was so lethargic and refusing to eat or drink. All of his blood tests came back normal! He didn’t even need a blood transfusion! That, we were happy about…but we were still nervous and anxious because Gray wouldn’t eat, drink or get out of bed. He definitely wasn’t himself. All we could do, though, was watch and wait. The doctors kept him on an IV and told us he was extremely dehydrated. Dehydration, exhaustion, side effects of chemo…whatever it was we had never seen anything like this before. The nurses kept telling us it was fairly normal but we couldn’t belp but be a bit nervous. It never gets easier to see your baby boy confined to a hospital bed without the will to even get up and walk around. Today, though, Gray made a miraculous recovery!! He ate, he drank and he had a dirty diaper!! Ha!! To most this may not be much of an accomplishment but Gray hadn’t had a dirty diaper in 10 days!! To us, this was a BIG deal!! We have to celebrate EVERY victory these days, even the seemingly small ones!! Today, not only are we celebrating Gray’s recovery but we are also celebrating being home together as a family. (Sigh of relief!) The scheduled hospital stays are hard enough to get through as a family but the unexpected ones are worse. Trying to balance caring for our sick child, giving quality and quantity attention to our oldest son, taking time for ourselves and setting aside whatever is left for each other?? Well there isn’t even a word to describe what that is like. Overwhelming, dauting, frustrating, exhausting…none of them do it justice. All of those feelings take a back seat tonight, though, as we are all under one roof, sleeping in the same house. And that’s just what we’re planning to do, sleep! Thank you all for your prayers this week and always. We are certain that your continued prayers are what have sustained us as a family during this time and what has helped Gray recover from his awful chemo side effects. We know the future holds more hospital stays, doctors visits and unexpected surprises (if you can call them that…) but tonight, if just for tonight, we will do our best to keep that from our minds.

“But it is when a crisis arises that we instantly reveal upon whom we rely. If we have been learning to worship God and to place our trust in Him, the crisis will reveal that we can go to the point of breaking, yet without breaking our confidence in Him.” -Oswald Chambers

a call to pray

As you know, Gray had his fifth round of chemo this past week. He was released from the hospital Saturday but it was a sort of conditional release. Gray was still getting sick and wasn’t really drinking enough to stay hydrated but the doctors released him telling us that if he continued to get sick or refused to drink that we had to bring him back. At first, we were optomistic. Saturday evening Gray acted like his normal three-year-old self! He was in a great mood! But Sunday morning he woke up sick again. We gave him some nausea medicine and “watched and waited” hoping that the throwing up would subside. Throughout the morning, though, things only seemed to get worse and Gray was becoming extremely lethargic and wasn’t drinking at all. In fact, in the 24 hours after his release from the hospital Gray only took in eight ounces of fluids. We became even more concerned when Gray told me he was going to throw up, as he sat on the sofa, so I put a towel in front of him and leaned him forward. He didn’t get sick but was so weak that he practically collapsed right into the towel face first. He didn’t have the strength to keep himself sitting up. Sigh. We decided to take Gray back to the hospital and the doctors made the decision to admit him to give him IV fluids. He will stay overnight tonight and hopefully be released tomorrow. Above all else, we hope that a night of fluids and medicine will bring our baby’s strength (and his personality) back. I have to say that cancer never ceases to take over your day, change your plans and keep you at its mercy at all times. We never know what a day will hold. But we truly want to see our baby better. Please pray for Gray tonight. Pray that he will stop getting sick, that his strength will return and that he can go home and enjoy some “normal life” before his upcoming surgery.

“Find rest my soul in Christ alone, know His power in quietness and trust. When the oceans rise and thunders roar, I will soar with you above the storm. Father you are king over the flood. I will be still and know you are God.”

find rest my soul

Gray is finishing his fifth round of chemo today. He has been in the hospital since Tuesday. This chemo treatment cannot be described in words…and not in a good way. Gray has been extremely sick throughout the treatment. The nurses have had to give him medicine to help with his nausea, which in turn makes Gray extremely tired. The entire week has made Gray irritable and, let’s just face it, downright cranky! We can’t blame him but that doesn’t change the fact that we not only have to care for our son who has cancer but add to that caring for a son who growls at you, hits you and screams every time a nurse enters the room. Sigh. BIG sigh. Needless to say, we are ready for this round of chemo to be over! During our hospital stay this week we have gotten a better sense of what our next few months will hold. After this round of chemo it is likely that Gray will be scheduled for surgery to remove as much of his tumor as possible. Please pray that not only will they be able to get ALL of the tumor but that they will also be able to remove the parts of the tumor that have attached to Gray’s aorta. As of now, the doctors are telling us that this portion of the tumor cannot be removed but we have full faith that God will work a miracle. We want our baby boy to be tumor free! After his surgery, Gray will go through another round of chemo followed by a bone marrow transplant. The transplant takes 30 days and he has to be admitted to the hospital for the entire procedure. Please remember us in prayer as we approach this transplant. Enduring one week in the hospital is enough to make our entire family, and especially, Gray tired, cranky and short tempered. Cancer is isolating enough as it is but a month in the hospital??? At this point, we can’t even begin to imagine it. We don’t even WANT to imagine it. We also received news that the trial Gray is in may mean he has to endure two bone marrow transplants, which would require two months in the hospital and not just one. That’s a bridge we’ll just have to cross if and when it comes. We thank you so much for your continued prayers, especially during the recent holiday season. We know that we were remembered even while you were with your families and celebrating with your friends! We could feel your constant thoughts! We are anxious, right now, to get home and to get Gray well. We hope and pray that he recovers quickly. We want to see him smile again! We are also anxious for Gray’s upcoming surgery. While we are a bit nervous, as you can imagine, we are also eager to get this tumor out of our little man and know that he his that much closer to being cancer free and completely well! We are still believing in a miracle…even on the hard days.

“Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God, he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.”  Psalm 62: 5-8

emotions rise

Monday, Grayson was scheduled to go to clinic for what was supposed to be a routine blood test to check his hemoglobin levels. Unfortunately, his counts came back at 400, which is extremely low, and so we had to keep Gray in the hospital for a blood transfusion right then and there. Nothing like a change in plans! So a quick “run to the hospital” turned into an all day, tiring event. Thankfully the transfusion went well and we could almost immidiately notice a change in Gray’s energy level. I guess the silver lining is that this happened before Christmas so that we’re not stuck in the hospital when Santa is visiting! And hopefully Gray will feel better over the holiday as well. While we were in the hospital Gray received this singing stuffed Barney from Ally’s House Elf Program! He absolutely loves it…as you can tell! The next day, Tuesday, Bob Stoops and a handful of OU Football Players hosted a Christmas Party at OU Children’s Hospital for all the children on the 10th floor. It’s an annual event where you can meet the players, get autographs and the team members put on skits for the kids! Gray wasn’t really all that into interacting with the footbal players. He did enjoy, however, the feather boa that one of the players used in a skit they performed! Ha! Big brother Seth, on the other hand, greatly enjoyed the party and hanging out with the football players! Dad was just excited to collect more autographs!Wednesday Gray was scheduled for another clinic to re-check his blood levels. This time the news was much better, as Gray’s counts had rebounded to over 10,000!!! We were so thankful to hear that Gray was cleared for Christmas vacation and doesn’t have to return to the hospital until January 3rd, when he will be admitted for another round of chemo. Now we are just excited for Christmas! We have family coming to town and have lots of Christmas plans to keep us busy. We do ask for your continued prayers, though, as more often then not it is difficult for us to cope with the ever changing thoughts, feelings and emotions that come along with your child battling cancer. Most days we don’t even know what to say or even how to feel. Sometimes, in a fleeting moment, you have thoughts that this is almost over, that maybe there is a light at the end of the tunnel and then reality hits and you remember how long of a road is still ahead. It can be discouraging. Cancer, doctor’s appointments, unexpected hospital stays, daily shots and constant doses of medicine certainly make all of life tasks, even the smallest and most simple ones, more challenging. In fact, cancer makes everything more challenging. We also ask for your prayers regarding our families health. We found out this weekend that two out of the four of us have strep throat. Not only is it bad timing for Christmas but also bad for Gray too. If it hadn’t had been for the fact that Gray’s blood counts had come back so high on his second visit we would have been forced to split our family sending half to stay with Grandpa and Grandma while they recovered to keep Gray safe from getting sick. We truly do not want this to ever happen. Although, we realize that at some point we may have to remove ourselves or a member of our family to protect baby Gray it is certainly not our first choice. Please, as you pray for Gray, also remember the health of our entire family. We will take lots of pictures over Christmas and share them with you all on our next post. Thank you to everyone for all of the gifts that you have blessed Gray and Seth with over the last few weeks. We love you all!

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

no rest for the weary

Whew. Where to begin…??? The past week has been a series of “downs” with few ups to keep our spirits high. Gray honestly didn’t get too sick with his last round of chemo. The nurses were really good about making sure he had medicine to keep him from feeling nauseous and it worked for the most part. We did have one incident while admitted to the hospital. Gray was playing in the children’s wing playroom while receiving his chemo treatment and his tubing somehow got caught as he was walking and it snapped the line in two! Chemo was spilling all over the floor! I ran down to the nurses station to get help and when we came back not only chemo was leaking but blood was dripping onto the floor as well. I guess when the sudden pressure of the chemo being pushed into Gray’s body was interrupted by the break in the line that pressure reversed and so blood was coming out through the chemo line and spilling onto the floor. I was totally freaked out! The nursing staff had to sanitize EVERYTHING and reset Gray’s chemo bag. It was crazy! The only response from Gray, though, was a high pitched “Uh-Oh!!” as soon as he realized his line had broke! Ha! Since leaving the hospital Gray has had a really hard time sleeping, which of course means the whole family has had a hard time sleeping. Gray has began crying and screaming out in his sleep. He screams things like “No, Mama, No!” and when we try to comfort him he fights us. It’s not only scary for us but also heartbreaking. There’s nothing we can do. Please, please pray that Gray will be able to sleep better and that he will have peace during this time. He may only be three but he’s quite smart. Today, we were supposed to take Gray to clinic to have his blood levels checked post chemo but the entire process was a fight and so we rescheduled for tomorrow. Not only was it a struggle to get Gray dressed but when we attempted to put him into his car seat he put up such a strong fight that we eventually gave in. Sigh. We know he’s scared and we know he’s catching on to what is going on around him and so we just pray for peace in his tiny mind and body. It’s torture for him. It’s torture for us. We would also appreciate your prayers for us as a family. Please pray for endurance. It may sound awful to say but now that the “newness” of Gray’s diagnosis has kind of worn off all we are left with is cancer. At first, this entire process was a whirlwind of visitors, gifts, phone calls, well wishes, cards, doctor’s appointments, hospital stays, surgeries and a whole lot of learning about our new life. Now, though, that we have settled into a new routine and our life has resumed some form of normalness it’s almost as if the cancer weighs even heavier on our minds. We have more time to think. More time to wonder. Mentally this cancer, this new life, is taking its toll on us. At this point, I guess we don’t need or even want anything tangible. We really, truly need the things that only God can provide. We need strength, perseverance, hope and patience. While we have so greatly appreciated all the monetary donations and gifts and we welcome them in the future we simply need God to take over. We know in our minds that we can do all things through Christ who gives us strength but now we just need to feel that in our souls. It’s such an easy verse to recite but so much more difficult to live out in the face of something like cancer. Thank you all so much for your continued support, thoughts and prayers. Even on the bad days we feel your prayers strengthening us and helping us through each day and even each minute and second.

“I need thee every hour most gracious Lord. No tender voice like thine can peace afford. I need thee, Oh I need thee. Every hour I need thee. Oh bless me now my saviour, I come to thee.”

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