Saturday, May 29, 2010

God, Continue to Lead......

I'm listening to Kathleen Carnali's "Dangerous Prayer" right now. "Jesus Rain on my parade, stripe down again, so i'm desperate for you, Jesus whatever it takes bring me to my end so i'm desperate for YOU. Amen". Wow, i'd have to agree, a painful and dangerous prayer to say the least, but an extraordinary place to be. For the last 10 months we have been on this journey of desperation for God to carry us, guide us, strengthen us, and sustain us....and HE HAS DONE THIS MORE THAN WE COULD HAVE EVER DREAMED POSSIBLE...Through most of our journey we've had clear answers, and although we've had to wait for what seemed like an eternity. We have some answers. The Doc's met Thursday and concluded that Colin has deep brain involvement of the Lymphoma, and it is right now resistant to chemo, so all chemotherapy is being stopped and we are switching gears entirely. RADIATION. This is completely unchartered territory for us to this point. All we know is that he will have full brain radiation. We have our first meeting with the radiation oncologist next Thursday (June 3rd), to find out what the treatment schedule will be and how extensive. Colin and I both cried, not from saddness, but relief. He won't have to go through any more chemo! His organs and his body can start to recover and heal, and we can pray there will be no lasting damage....OUR GOD IS BIG....we have been making it our heart's cry to trust that God is going before us through this...HE IS...He has closed doors and opened others, so we are in this comfortable inexplicable peace that we are being carried and guided, it's a safe place to be. Being able to be at home, even though the news was over the phone, was where we needed to be....HOME, to cry, hug, be distracted by the kids, just process in our own space. God knows exactly what we need, had it been earlier in the process, this would have been devastating news, but this is our next open door, and God is leading.
Since we've been home, the kids and i have been run-down and so the sickies come, just comes with having kids...God is protecting Colin, as i clean behind our sweet boys, i am in constant prayer that God will keep him here at home for as long as possible. Please pray for Colin to continue to be protected and that the kids will heal up super quick.
Home is so good, and we are laying very low for the most part, but just being altogether is the most amazing thing, i feel like each time we get to come, it feels like the first time all over again, it never loses it's beauty!
I want to say it, yet again, we so appreciate your prayers, encouragement and support, it's easy to become distracted by the everyday life and this has been 10 months and going, BUT we so need our support system behind us!!!! You are who we lean on, and we pray God's richest Blessings on you all who are still following us, and walking this with us! The beauty of the Body of Christ is an incredible place to be!!!!!
Luv, Melissa and Colin

Wednesday, May 26, 2010

Loving Every Minute...

hi! What a nice quiet "normal" day so far! We actually did hear from the Doc's last nite, and they are still split with what to do with Colin in moving forward, so they are meeting, i guess about 15 doc's or more on Thursday afternoon, and in that meeting they are going to come to some mutual understanding and get a plan in place for moving forward and then they will check in with us and let us know what they all decide. It's kind of unsettling but also there is a lot of experience and knowledge with all of them together and for that we will pray that God will give wisdom where it is due, and give them guidance and direction for setting a plan in place.
As for now, WE ARE AT HOME AND LOVING EVERY MINUTE OF IT!!! It didn't take much for us to get settled in again, and an added blessing about coming home this time around was that the kids came up to Calgary with us, so i was seeing them each day and the re-establishing of "i mean what i say" and of our little family unit, is in tact this time around so it isn't so exhausting coming home and having to deal with the attitudes and lack of listening.....but kids will be kids, so just like everyone else, we deal with those types of things on a daily basis....but it's normal and it's life and i love it so much!
Colin is feeling ok, a little achy from the drive home yesturday and just being up so much of the day, but he is napping peacefully now in his own bed, and i made him his favorite breakfast this morning which is Pillsbury Apple Turnovers, so it's a good day so far!
Anyhoo, that's all i have to report today, it's amazing what home can do for a person's morale....Colin was like a different person when he called me yesturday to say that we could go home, i know this is what keeps him whole and feeling good is the time at home, he gets his head right to help him cope for the next time around....honestly though, the more time we go up, the more difficult it is getting for him, so i pray that they can get a plan in place, to give him something tangible to work towards, or just some direction on what is to come!
oh i should go, Colin is up and snack time in upon us, i will keep you posted on what "the plan" will be!
luv, Melissa

Tuesday, May 25, 2010

Here we are home once again! We got home this afternoon around 3 and are just going to try and settle into our little house for the next many days until we return to Calgary. We aren't to certain the plans the doctors have right now but we will update as it comes up. They, the doctors were meeting today around 1pm so they were going to call in the next few days to let us know what will be the plan moving forward.

In the mean time we were told about 12 days at home! So much better to hear then 7 or 8 days. Please keep our health in your prayers that we wouldn't get sick or spread sickness in the house. We need this time right now and I know God hears our prayers. This is crucial healing time for us physically and spiritually for all of us. Thank you everyone for your continued support and prayers, we could not and cannot do the journey down this road without them. As I feel better and have more time I will try to sit down and share my thoughts and prayers with you about how things are going because the Lord and I have had some real heart to heart's these past few days.

Again we did get home safely today and so look forward to time just being us here in our house.


Monday, May 24, 2010

Just one of those days!

Being "in limbo" is the most difficult aspect of this journey. Colin and I are honestly having a really difficult time of things, trying to be ok with having absolutely no answers...knowing nothing about what comes next and in turn trying to cling to our God giving up total control over our situation, without "giving up" on our situation. Colin is so lonesome for our little family, to be around the boys, he misses them so much. This round has been so hard, he's been in such discomfort with his physical symptoms, not wanting the kids to see him like that, but still wanting more than anything to have them around, to not have to be in the hospital. Honestly, this is all getting so "old", we are exhausted of having to go through all of this, and we are trying not to get defeated by our reality, but we have nothing tangible to work toward, to look forward too. I guess we are trying with everything we have to remove ourselves from all of this unsettling mess, and rest in the Almighty Arms of God, to be content and go against everything human to relinquish our need to control and just "let go and let God take it". See, this concept is so much easier said than done. That's the frustrating part...Colin is seeing results in his headaches going away and nasuea, BUT, this is only because they have put him back on his steroid to keep him comfortable....That's the tough part...nothing is going away, just being kept "at bay", and everyday we wait for something, and as of now, we have nothing. Nothing but the unsettling facts....unless medicated, Colin is in constant pain, this has been the common denominator since this started in March. I am frustrated, so i can't begin to imagine Colin's frustration in it all. All Colin can focus on right now, literally because of his blurried, double vision, is listening to his worship music...he will never give up, but it's still a constant struggle to get up everyday with something to look forward too. We are hoping that he'll be able to get home, at least for a week, before the next round, but the Doc's are tentative to let him out of their sight with new unexplained symptoms poping up each time we go. He needs to get home, i explained that to the Doc's today, he will honestly go crazy here if he has to stay. I think they realize that and i'm sure he'll be able to come home for a bit. Not long enough....I am so envious of "normal", that beautiful place of waking up together and spending the day with my boys, and having Colin come home from work and have supper together and spend a quiet evening at home, all going to bed under one roof. I am working hard to change the way i pray, giving PRAISE and GLORY to GOD with each request, each thought, it honestly changes a person, to refocus the way i come to God in prayer, teaches me to see those teenie tiny blessings, even in this dark hole.
We are just being honest, Colin is right here with me, giving me thoughts as i type, so this is what is going on with us today, this is what is in our hearts to share, we have good days and bad days, this evening, the boys are coming up to visit, some SUNSHINE to our day....we are so thankful for that!
I honestly don't know what else to say, but thank you for hearing our hearts and our hurts....
Luv, Melissa and Colin

Friday, May 21, 2010

Just Plain Out of Answers...

well, i honestly thought the next time i would post a blog update was with a lot more answers than i am. WOW, to be honest we are right back at the beginning, so to speak. Colin and all of his weird symptoms is causing much confusion amoungst the Doc's. They honestly have no idea what to tell us. Aside from the fact that at this point in our journey, the option of transplant is not our decision to make. They have put everything on hold regarding transplant. What we do know about Colin's condition is that unless he is heavily medicated, he is in constant pain. He has been this way since the beginning in March of this time. This concerns them because at this point they need to be seeing steady improvement with the lymphoma responding to the chemo, from last MRI 2 weeks ago, there has been no change, the big question is whether the chemo is making him more sick or the lymphoma in the brain is continuing to make him sick, it's a level teeter totter right now, and both are fighting against each other, and poor Colin is in the middle miserable. He is tired, we all are tired of not knowing. We put our faith in these Doc's to know what to do, and now that they don't it makes us nervous about the decisions they make, are just trial and error at this point. More importantly we are at the feet of God our Healer, and we know this is where He knows best, and where ONLY HE can intervene! We are praying for clarity, that God will bring answers and the Doc's will have a way to figure this out and get us moving forward. We do PRAISE GOD for answering our prayers, we have been praying for God to open and close doors and to go before us and guide us, HE HAS... we know that we have to wait....we don't have the options we had a few days ago.....we may have the options again in the future...but for now, we are being so literal in taking it one day at a time. Honestly, believe us when we say we are frustrated, but we are strangley at peace. God is SO evident in HIS guidance, that we are in full TRUST that HE will continue to walk before us in this process. It's so weird, but so wonderfully comfortable to be being held by our Powerful God.
Please pray for Colin, he is tired, tired of medication and the "fog" that comes from it, he is tired of his symptoms and of being in pain, pray that the Almighty Arms of God wrap him so tightly and that he can be in comfort and in peace, he does have that peace that God is in control, but this is so physically draining.
Thank you for being patient, i didn't want to leave our updates too long, and i thank you for your continued prayers, GOD IS SO GOOD....we cannot say it enough. For now, they want to move forward with chemo tomorrow, their fears are if they stop to see if the chemo is making him sick, that the cancer will grow with vengance and they don't want to risk Colin's life, but they need to see noticeable changes in the lymphoma and so they will continue to do more testing every few weeks, to see what the concer continues to do, for now, it's no worse or better.
That's all we know, and for the next few weeks, that's not going to change.
i'll make sure i keep you posted on how Colin is doing....
Have a great long weekend!
Wish i had better news to share!
Luv, Melissa

Wednesday, May 19, 2010

Well we are back up in Calgary today, Colin was experiencing that nasty headache and nausea from before again, so we actually came up a bit earlier, just to be safe. I have him all settled in and he is just talking with the Doc now....ok i'm back. The plan so far is to do more spinal chemo tomorrow and also an MRI is booked so they can keep on top of the lymphoma and make sure there are no changes.
For now, we are off to find some supper, downstairs, the hospital menu is getting a bit old for Colin.
We are good, Colin is here safe and i will keep you posted every step of the way!
God Bless!
Luv, Melissa

Tuesday, May 18, 2010

Family Road Trip!

hello there everyone!
The last fews days we have been enjoying every minute of time in the beautiful sunshine! I'm glad we've had some great weather to enjoy as a family before we go back up for more treatment! This time, we are all packing up to spend the weekend up in Calgary. My (Melissa) parents will be coming up as well, to help with the kids, since they are not allowed up where Colin is on Unit 57. We'll all just take turns spending time with Colin and trying to have the time pass as quickly as possible for him. I'm glad the kids have something to look forward too as well, our kids and Andy and Nat's kids play so well together, they always love spending time with them!
I also want to thank you all for your prayers regarding direction and healing for Colin. We are spending a lot of time both together and separately praying and talking and seeking God for what is next regarding Colin's treatments. I know, to many of you it seems very clear cut, almost foolish that we are contemplating this so thoroughly. I have summarized the facts for you here on this blog, but there are a lot of other details that are too lengthy to go into detail on, and try to explain. We have talked to our parents and family members on their thoughts and we are gathering wisdom from every source we can. I think this is how God speaks, along with prayer and being in His Word! With that said, God is giving us clarity and peace, and with this next hospital stay we are going to be discussing more of our questions and thoughts with our team of Doc's. We are confident that we will have a clear decision from this time in Calgary! Please continue to pray for the Doc's and for us to be clear and for us to get the specific answers we need to make our decision.
Colin is doing well, all things considered. He is tired of his facial muscles not working, and it getting so draining trying to eat, or interact with the kids when no emotion shows, but God is good and our boys are doing so well with him. Physically, he can't do much, but just to have him home and for us all to be spending as much time as a family as possible...such good medicine!
I will be updating to you from up in Calgary for the rest of the week. Colin will be having another MRI Thursday and chemo starting again thursday or friday.
Enjoy this beautiful spring weather, we sure are!
Luv, Melissa

Friday, May 14, 2010

wow, we are blown away at how the prayer support rallied around us last nite! Both with our friends being there at the church as well as so many others praying wherever they were at 7pm! How Cool....what power there is in the body of Christ, God hears each one. Last nite we all went to sleep and woke this morning, with all four of us rested and even been able to sleep in a little bit! There is refreshing rest that peace brings, and that is it more than anything.
Colin is doing ok, he has been taking more chemo pills by mouth while he has been home. He has taken his last one's tonite, but he is just SO tired. A simple outing for an hour or so, takes eveything out of him, and he spends the rest of the day recovering. His face is no change, so eating and drinking and talking is so taxing for him. He is both physically tired but so emotionally drained from having to carry this extra burden of those facial muscles just not working. He longs to have something normal, to be able to be an active player in our little family, right now he feels like he's sitting on the bench watching us all. The power of prayer sustains us, our God is BIGGER and He hears our cries and carries our burdens! PRAISE GOD FOR THAT!
So we're off to bed, but we have God's peace that passes all understanding to calm all of our fears.
Sweet Dreams!
Luv, Melissa

Wednesday, May 12, 2010

Hi All!
I am typing this to you from HOME~ yes, we were equally surprised, but they thought if Colin was able to function and felt safe enough to be at home that he could come home for the week, until next wednesday for more treatment. We have learned that all the Doc's have for an answer to Colin's symptoms is that it's the lymphoma...there were tests done to see if there was damage being done by the treatment and that was ruled out as a possibility.
Colin is home, comfortable, and he's happy to be here with the boys. Obviously we had to explain to Corban why Daddy doesn't have any movement in his face to show any kind of emotion. There is no smiles, only laughing from his shoulders and the sound of his voice. He cannot move his eyebrows, or scrunch his nose, or blink very good or move his lips very well. The boys are doing well with him though, he is still Daddy and Colin is trying to come across as normal as possible but it's very frustrating for Colin, to function normally without feeling that he is inadequate to communicate.
We are slowly processing our new information of transplant and the whole process, and we are gathering all of God's wisdom through each one of our parents and people who have more life experience and wisdom than we do, we head each one's advice and we know God speaks through the wisdom of His people.
The reason i am writing today is that we are planning a time of prayer for Colin, a time to pray for healing, to give God our worries and fears and ask Him to cover Colin with a protection that can only come from our God. Also just for direction and peace to what lies ahead. Tomorrow, Thursday, May 13, 2010, at Hillcrest Church in the prayer room at 7pm. There is going to be a time of prayer. We invite anyone who is available to come and stand with us in prayer, but also, if you are not able to be there, as we know many of our family and friends are in other provinces and cities. But we ask that at 7pm tomorrow night, that you stand with us in spirit and ask God for His healing hand to be upon Colin as well as protection and provision in all of the details and decisions that lies ahead. We thank you in advance for being apart of this in any way you can! We also realize this is short notice, we felt the urgency that each day can change in an instant, and Colin is home now, and we are around our loved ones and we don't want to waste any time in coming to the Throne of God on Colin's behalf.
Thank you for any prayers you can give on our behalf,
luv, Melissa

Monday, May 10, 2010

I'm coming to you today from Colin's hospital room in Calgary. It is good that i got to come up...initially this was just going to be a short trip up to have our Bone Marrow Transplant meeting and then we would be packed and ready to bring Colin back home, but that is not the case. Although he was here for treatment...chemo was pushed back until saturday because of Colin's worsening nerve symptoms as well as his low blood counts. So today he is mostly the same, nerve wise. He has significant muscle weakness in both sides of his face, as well as some double vision in his right eye. We have been told as of today that the Doc's feel it is due to the intensity of chemo done to his spinal fluid and is causing a decrease in spinal fluid pressure. The fix is to stop treating the spine....meaning his body is showing weakening due to such intense treatment in such a short amount of time.
Today we come to you with such a heaviness. Our meeting with our transplant Doc was not one that we really wanted to face. It's almost easier not knowing sometimes, we have been told that the way to go is with a Donor transplant BUT, what we weren't expecting is all of the intense chemo and radiation that Colin will have to withstand FIRST. Not to mention the risks and chance for rejection and infection afterwards. Our answer is not clear cut, i guess nothing throughout this journey ever has been clear cut, but God has guided, and we are confident that He will lead us again. Today we are incredibly overwhelmed, first at the life altering decision we have to make, but also at the lengthy process ahead....we are so far from the finish, and we just want to be finished so bad. The reason this is not such a cut and dry, black and white decision is because if we choose not to go through with transplant, we risk relapse, which is very likely to happen and each time it will be more difficult to treat, but if we go through with transplant we not only still risk relapse(which is more minimal) but also damage to Colin's body in so many ways from all of the pre-transplant treatment. There are even risks that ultimately could effect his quality of life for the rest of his life. What i do need to add is that we did find out today that Colin's little brother Kris is indeed a donor match for him, PRAISE GOD....we really weren't expecting any of his siblings to be a match so if we do decide to go through with transplant, it makes it easier to get the ball rolling.
We have in no way even begun to decide today, what we need first is to seek our God for guidence and wisdom and pray for HIS clarity and peace and prompting for what to do.
What we ask of you who are reading this is to pray, please pray for us to have strength to make this decision, that whatever Colin and I choose, we will have our answer from God, Himself. Pray especially for Colin. He is so tired, tired of dealing with the annoyance of this nerve weakness. It makes it hard to talk, eat, see, etc....not something he needs to be dealing with on top of these decisions for his future. Pray that I can have strength to support and help him process, and that together we can be confident in an outcome to all of this.
Thank you for helping us piece through this burden, we would not be getting through this without your prayers....God is good ALL the time, i am just repeating this constantly today, i pray it will keep sinking into our spirits.
I will keep you posted on the decision making process and all the rest in between.
Luv, Melissa
my eyes are crossing as i reread this entry, i hope it makes sense to you to read....i am sorry, too many tears today....

Friday, May 7, 2010

"...It was Then That I Carried You..."

To be honest with you, i've been dreading this update, almost at a loss for what to say....last nite the neurologist came to assess Colin and determined there was significant symptoms displayed in his nerves....this is resulting from the thickening of cancer still being around the membrane of his brain...this membrane is extremely sensitive and so it is going crazy with trying to fight off this thickening surrounding it. I don't know if i had mentioned before, but when we were in Medicine Hat, this time around, they located a small "mass" or tumor on the base of Colin's brain....this also is causing pressure and effecting the nerves, and it is ultimately resulting with his symptoms. In saying all of this....they haven't seen the cancer get any worse...Praise God...but they are still wanting more results from treatment....they want things to "settle down" a lot more. Today we find out what the team of Docs want to do with treatment...whether to leave things as they are, and do more follow up (MRI, CT's, etc), or add some more treatments. Colin is extremely exhausted and wanting to sleep all the time, which is good, he's there to get better and he's in the safest place he can be. We are nervous for any lasting nerve damage, which also takes a very long time to recover, if at all. God is bigger than this....but in finding all of this new information, and learning a whole lot more about the human body, i stand in awe of how perfectly each one of us was designed and created...An Artist with only the most intense love is the only explanation i can give credit too. Colin and I both, along with our families are so drained. This is such an emotional rollercoaster and i just wanna scream for it to stop so we can unbuckle and get off! The most difficult thing is Colin and i being apart, then having to deal with new information on top of it all, it all just mounts. All we can do is beg you to keep us uplifted in prayer, it's here and now that we need the Almighty to carry us....and just please keep praying protection over Colin's body from the cancer and also from the toxicity of the treatment. That most importantly, Colin's mind can stay strong, his sights to be kept on Christ, alone...and that by holding the Hand of God, Colin will be at peace and find rest.

Thursday, May 6, 2010

Some piece of SOME thing!

Well what we know so far today, is that Colin had an MRI done last nite, which we are waiting for the results, i've been trying to busy myself waiting for the phone to, patience is NOT my strength....the worst is that Colin is still having his symptoms, he had an aweful sleep, he has found that sleeping upright relieves his pain a little bit, falling asleep is the hard part and he was still throwing up throughout the night last night, so i'm praying we'll know much more by the end of today.
I just talked with him after lunch and he was just coming out of sedation for his spinal chemo. They have postponed his high dose chemo that was supposed to be done today because his blood counts have fallen too low, we are still waiting to hear from a Doctor about the specifics on that issue as well as the MRI results, so again, we wait! Colin is trying to nap some more now, and i'll make sure i post when i know something.....oh, ok, i've just talked with Colin. He has spoken with the Doctor's up there. The MRI results have showed that there still is a thickening (cancer) around Colin's brain, it hasn't gotten any worse, and is showing a bit of an improvement. They have asked that a neurologist come to see Colin and assess him and also that he would look at the MRI as well, for other explanations of what could be causing his symptoms. There is a chance that the chemo could be causing Colin to be sick as well, but nothing is for sure until they can get the neurologist there to see him. So chemo has been postponed to tomorrow or possibly Saturday depending on their findings.
I know this isn't much, but it's something, and at this point, i'll take any little bit of information i can get! Today, i'm finding it extremely difficult to be away from Colin....just keep him in your prayers, that they can get to the bottom of his pain and find what is causing it, so they can get him better!
i'll post as soon as i know more!
luv, Melissa

Wednesday, May 5, 2010

Upside Down and All Around...WINDY!

I really hate doing this, but i have some crummy news to report to you on Colin's condition. For the past 3 days or so, he's been getting a nasty headache unsettlingly similiar to the one that started this whole mess, and since his head started aching again, he has also started throwing up yesturday and today, so we were almost relieved he had to head back up today. They weren't going to leave until 4pm, but he had to get up there sooner to get a hold on his pain and nausea as well as get there before the Doc's left, so they can take a closer look at him, and possibly do more testing. Poor Colin, he was starting to get back on his feet again...i guess it's hard to say what this could be at this point...but there is always that thought in the back of our minds that the treatment isn't working as well as they'd hoped it would, or that he may need more treatment, or a different kind...who knows, so this roller coaster still takes us on this nauseating course, and we have no choice to try to cope through it all. I guess i'm struggling with not being as active in his treatment and stuff as i would like, but the kids need the stability. I will be headed up on Sunday to spend some time with him and be there for our Bone Marrow Transplant meeting on Monday morning....we have no idea what that will hold for us either....this "not knowing" is very scarey for Colin and i. It's hard not to have anxiety about how things will turn out, when we just have no idea which way tomorrow will turn us.
Please pray for Colin....that the Doc's would do the appropriate testing so we know what the cause is, and if it is any more serious. Pray that the chemo has already been working, and for it to continue to work in line with God's total healing over his whole body. Pray also for his body to "hold up" long term...with all of this tramatic and toxic treatment in such a short amount of time, it's hard not to think of the possiblities of damage being done.
Well off i go, to read more on Psalm 23....i could use all of God's Wisdom i can get!
Thank you for your prayers...i pray i can report much better news on the next post!
Luv, Melissa
Now i know what it would feel like to be that plastic bag being tossed around in the nasty wind storm we just had! NO FUN!
Oh, i just got a text from Colin. He and his mom just arrived safe and sound at the hospital! Now he's in good hands and he'll get taken care of! i'll update when i know more!