Christian's story actually began in May of 1994. I hadn't been taking notes or doing a blog at this time, so this first part
is just remembering as best as I can, what events took place.
July 10th, 1998 *Update*
*UPDATE - AUGUST 10,1998*
*UPDATE - Sept 6th, 1998*
*UPDATE - Sept 15th, 1998*
*UPDATE - Sept 24th, 1998*
*UPDATE - October 7th, 1998*
*UPDATE - October 25th, 1998*
*UPDATE - December 4th, 1998*
*UPDATE - January 11th, 1999*
*UPDATE - February 16th, 1999*
*UPDATE - February 28th, 1999*
*UPDATE - March 12th, 1999*
*UPDATE - May 6th, 1999*
*UPDATE - June 29th, 1999*
*UPDATE - July 22nd, 1999*
*UPDATE - October 22nd, 1999*
*UPDATE - January 6th, 2000*
*UPDATE - March 5th, 2000*
Chris was 7. We went in to Emergency because of a sore ankle that adult strength Tylenol wouldn't fix. They said he had an "infection" in his ankle, and that we should elevate it and give him pain medication. Well, this seemed rather strange to me, but I am not a doctor, so I did as was said. Thankfully they sent the bloodwork results to our family doctor, and she saw that his white blood cell count was way off the charts and called us to go to the Alberta Children's Hospital right away. After a trip to the Alberta Children's Hospital, we found out he had ALL(Acute Lymphoblastic Leukemia). When I told Christian, he got very quiet. Then in a small voice, he asked me, "Mommy, am I going to die?" How do you answer that question to a 7 year old? I just told him, "Honey, I really don't know. Only God knows when He is ready to take us home. Let's just keep trusting Him and pray that we will be ready for whatever He decides to do." Chris seemed to accept that and gave a small nod of his head, saying, "Okay Mommy, I can do that."
We went the routine route of getting him into remission, followed by chemotherapy. He was fine for awhile, but then he relapsed during treatment in September of 1995. This is not a normal thing. Hardly anyone relapses while in treatment! After much deliberation, the plan for him involved a bone marrow transplant after remission. The bone marrow was (and God blessed us here) from our second son (Jonathan), who was a perfect match (6 out of 6). Chris got quite sick after this, with one of three life-threatening infections. I remember having the hospital phoning one morning after my husband left for work, and I was getting ready to go to the hospital, saying we both needed to get down there asap! I was a wreck by the time we got there, and walked into that room to see my little boy curled up in the fetal position. I feared that day. But again he rallied, and they were able to contain the infection. We managed to get through all of that not without some fear and many prayers!
Then Chris had to go through full body radiation. (Pictures of this in the pictures section) This is done so there is no bone marrow left, and no cancer cells. This also removes good cells, so he had to be in isolation during this whole time. He did well with the radiation, but you can imagine how frightened he was.
After all this and chemo, he is ready for the BMT. His brother went in to have 3 large needles inserted into his hip and back to collect the bone marrow. Jonathan was more worried about feeling nauseated when he came back, than he was about the pain. He was a real trooper, and we were very proud of him.
So near Christmas, they gave Chris the bone marrow. He was a very sick little boy. He refused to eat or drink. This caused me a great deal of stress. This was all done during Christmas season, so you may imagine it was hard to balance all the family over Christmas. Christmas day was spent for a few hours with Chris so he could open the many presents he had that year. (the support and love was incredible!) He opened a few of them, but was so sick and so tired, he asked to go to sleep. We left him for a few hours so we could take our other two kids over to their Grandma's place and have a somewhat "normal" Christmas. This concept of juggling the sick kid, and the well kids, is difficult at best, as you feel torn between the two and try to make things as normal as possible. But we can only do our best, and pray that the kids will understand we did try our best. Lots of prayer and praise to God helps also :)
Time passed while we waited to see if the bone marrow "took". Finally one day we saw his red blood cell count going higher. The bone marrow was working! The rest of the days passed waiting for recovery, coming out of isolation and obtaining a remission. The nurses were incredible and patient with us and our millions of questions.
Anyway, after all this had passed and he obtained a remission, he went back to school and we enjoyed 2 and a half years of remission and peace.
Then in June of 1998, he relapsed once more. He was going for a routine check-up before leaving for vacation with dad and his brother and sister to meet mom in British Columbia, Canada. Well, I got the phone call telling me he had relapsed, so needless to say, I made my way home as soon as was possible. I arrived to find him in the hospital, and quite ready to face whatever was to come.
After more deliberation, the doctors have given us three choices: 1) We can give him massive chemo and hope that works, 2)He can have a second BMT, which has only been done twice in Canada at this point or 3)Let nature take its course. Well, to us, number 3 did not seem like an option at all. Number 1 did not seem much better, because he would have been so sick and it might not work anyway, so we chose to have another BMT (bone marrow transplant). At this point, I started making a bit of a journal when I actually thought of it.
Chris has obtained a remission! Praise God! Now we have to wait for the road map to know where we go from here. Chris spent the last 4 days in hospital for stomach cramps (found out it was from the chemo drugs causing acute constipation). He is home now, and feeling fine. While in the hospital, he was in a room with another little girl who was very sick. I didn't get a chance to find out what kind of cancer she has, but she was in a great deal of pain. I found myself praying for her and her so very tired mom. I got to thinking, there is always someone else around the clinic and hospital who may be going through worse than you, and it is such a relief and a blessing to be able to pray for someone else, even if they don't know it. It helps get your mind off your own troubles for awhile, and you can obtain such a blessing from it.
Chris is now in the hospital (and has been on and off throughout the beginning of August due to infections) and mom has been going nuts, with more time spent out of the home than in. My second son Jonathan (who again will be the bone marrow donor) will be admitted August 11th to harvest his marrow. This will be done through an atheresis machine (pictures in pictures section) so hopefully it won't be as invasive as the huge needle pokes in his poor little back and hips! Apparently we are going for a bone marrow transplant sometime mid-October (more later as I find out). Chris is going through a rough time at the moment, with nausea and infections, and not eating. He is a very sick little guy right now(although he is 12, so I guess I shouldn't say he is little anymore *grin*). He has had 2 platelet transfusions, and one blood transfusion in the last 4 days. I do pray one day soon he will be home again, and that the infections will stop, and that some appetite will come back. That is all for now, but do keep Jonathan in your prayers these next few days. Blessings upon you.
Chris has been home now for the last 3-4 weeks. Praise the Lord for that! He was supposed to go in 3 weeks ago for his second round of chemo, but that fell through as he has troubles with his kidneys. (The chemo he was supposed to be getting needs his kidneys to be in 100% shape) Some sort of acid or something in his kidneys is too high. I haven't got the complete story from nephrology (sp?) the kidney guys anyway. :) So now, as far as I know,(hopefully we will know more on Tuesday when we meet with Chris's doctor) the game plan is that he will be getting Busulfan ( a chemo drug that will kill his bone marrow) next weekend for 4-5 days?? and then possibly going for transplant. WOW!! Things change so fast...we went from mid-October to mid-September for transplant. I am getting nervous, I must admit. This time may not work...I am trusting God to do what His will is, but I am only human, and I worry. But God is good, and is faithful to complete the work He has started in me and my son. So I will try to write more after Tuesday when I know (hopefully) what the plan will be for us for the next little while. Continued prayer is felt! Believe me.
Chris is now in the hospital. He is currently on the medication Busulfan. It is a chemo drug to kill off bone marrow, as Chris cannot go through total body irradiation again. Then he is also going to be getting Cyclophosphomide, another chemo drug to kill off bone marrow. This will take him to Sept 22nd. When that drug is through his system, he will be getting his stem cell transplant. Hopefully this will be Sept 24th. All of this is going to make him a pretty sick little guy. His chances are very slim at this time, as complications will set in, and his body cannot tolerate much more chemo. I am trusting in God to do what His will is, and I will trust Him for anything. He is my strength and the one to whom I turn to at this time. Thanks again for prayers!! I cherish every one of them!
Praise the Lord! Chris has come through the transplant with flying colours! The doctors were amazed at how well he did, but I knew I had the power of prayer behind me from all of you wonderful people! I praise God for each and everyone of you who prayed for us this day, and for all the days you have prayed.
Jonathan went through all of this incredibly well. He was frightened of the big machine (understandably), but he rallied like the trooper he is! (Again you can see the pictures in the picture section.) Please continue to be in prayer as Chris will face the hardest part of this transplant within a few days from now. He will face life-threatening infections, heart trouble, sickness (throwing up alot), and many other troubles. Pray God would have His way in all of this. Pray for strength and wisdom for us his family. Pray for wisdom for the doctors, and also please pray for finances for us. This is very hard. Thank-you so much and I give thanks again to God for all of you and your faithfulness!
Chris is now going through GHVD Graft Versus Host Disease. It is where the host(Chris's body) rejects the graft(Donor marrow). But this is what the doctors wanted to see a little bit of, because GVHD also fights leukemia cells which may be residing in Chris's body that they cannot see. So, they want some of this disease, but want it in a controlled situation.
Chris is feeling a little better, he was quite sick and quite listless and depressed. His spirit's are a little better now, even though he has a rash, and his mouth is very tender. Hopefully as his white blood count comes up, he will start to heal. He is on his way to recovery and doctors are hoping that maybe in a week he can go out for a few hours and go home. All will depend on how his counts are, and whether or not he will get anymore fevers. He is far from out of the woods yet, and his chances of survival are less than 40% at this point. He may live for another year, or upto 5 years. Or he may go within 6 months, depending on how the cancer fights against his system. But having said all that, God is a God who likes to fight against the odds. He is a God of miracles! Praise the Lord! He can cure Chris completely if it is His will. We want to be in God's will, so we are trusting in God once again, and are prepared for anything the Lord wishes to give us. Chris is at peace with God, as is his family. We rest in His wisdom and love. Selah!
Praise God! Chris is now home. He was formally discharged Oct. 18th. We still have to go back to clinic every 3-4 days, but even the doctors are surprised at how well he is doing. Are we?? :) Well, given the prayer support he has received, it is not that surprising. But God is still in control, and it is His will as to what happens from here on. Chris feels good, and his counts are excellent. He is taking less pills now, and they are monitoring his GVHD (see above update for info) through a steroid. It is hard having Chris home all day in a way, because I don't seem to get anything done around the house, but it is nice not to have to drive to the hospital everyday. Well, I will leave you with this, and try to get another update when I can. Again I thank-you for your many prayers said on our behalf, and know that God will honour you for your faithfulness!!
Chris is still doing well, praise God. We are at the waiting stage. Waiting to see if anything else will happen (He is still at risk for infections and whatnot) and waiting to go back to school! :) He is anxious to get life as normal as it can get for him now. His spirits are up, and his attitude is positive. We have had a great time together actually. I was worried that spending almost 13 hours a day alone with him, we would get tired and upset with each other...There, but for the grace of God, go I. I feel it is time to more concentrate now on other people who are going through this time alone, at Christmas. I know the feeling of going through Christmas in the hospital. It is not the ideal, but it can be manageable as long as you keep your eyes on Christ, and focus on the truth that you are together in a sense, even if not physically. Keep your eyes upon Jesus! Thank-you again for prayers said for us and for Chris's health.
Woo hoo!! Chris is getting his line out sometime this week, so he can go to church now, and clubs, and best of all, school! He is so excited. He really misses his friends, and misses being with kids his age, instead of being stuck with mom at home *wink and grin*
We are so thankful for all the prayers all of you have said on our behalf, and we count it a blessing to have heard from all of you during this time. Again, I pray the Lord would bless each and every one of you. Some of you have stuck with us more than necessary (you know who you are) and I would pray God would bless you especially!!
Chris wanted to thank each of you for encouraging him and helping me cope with all of this. We are still not completely out of the woods, but we take each day as it comes, and will take care of other things as they come. For now we thank and praise God for this gift, and we pray for the many other families who are still undergoing their trials.
Please visit the National Childhood Cancer Foundation for more information on childhood cancer.
Again, thank-you and many blessings upon you. I will not update again unless something else comes up that I feel you need to know.
Well, I guess something came up. *sigh* You are never completely finished once you start with this, I think. Chris has developed shingles. This is the virus you get instead of chicken pox. He is in no pain with this, and it does seem to be clearing up, but he has had this cough for about 4 weeks now. He is in the hospital and has been for 6 days now. They have done a CT Scan on him today, as well as pulmonary function tests (breathing tests for lung capacity etc.). He is being scheduled this week (maybe Thursday or Friday) for a lung biopsy. The doctors believe it is either GVHD (graft vs host disease) or an inflammation or an infection. I hope one of these tests will tell us something.
So please keep Chris and myself in your prayers this week.
Chris has had a rough two weeks. On Sunday, three days after his biopsy, he wound up in ICU (Intensive Care Unit) because the lower part of his lungs collapsed. He had to go on a bi-pap machine (which forces air into your lungs.) There was a concern that he might have to be intibated(a tube going into your throat and breathing for you) Praise God we didn't have to go that far! He did well on the machine, and his lungs are slowly opening up again. He also had to get a feeding tube because he was basically mal-nourished from lack of food. He hadn't really eaten anything in 3 weeks, despite my efforts and the hospitals. So the doctors figured that because he wasn't eating, his body and muscles that he uses to help him breathe broke down, so he wasn't getting enough air into his lungs, hence the collapse. Chris seems to be slowly getting better, every day I see him, he seems to be a little bit stronger, but his spirits are down. He is rather depressed, and the doctors are worried he won't fight enough to get better. (I am not so sure, but I know he is rather sad). There is no sign of GVH (praise God) and possibly no infection, but the doctors aren't completely ruling that out yet. So please continue to pray for Chris. Your prayers are so valuable to us, and I am convinced they are what gets me through these long tough times. I thank God for you all.
Chris is home now. Praise the Lord! The final diagnosis is GVH (after much deliberation and tests). His spirits are totally up, and he is eating. Thank-you so much for the prayer support. I am convinced it was the prayers said on our behalf that got Chris so well so fast! Thank-you Jesus. Now Chris cannot go to school because he is on prednisone(steroids) and his immune system is suppressed. He went for a post-hospital checkup Wednesday (Mar 10th) and he also has thrush now (mouth sores etc) and his prednisone dose (which was supposed to be slowly reduced so he could go back to school) was kept the same dose because he has "wheezing" in his lungs. I am not sure what that means exactly (I will side with the fact that his lungs still are not quite at their potential and will get better with time) but it is still a little scary. Bless each and everyone of you, and I will update you again when necessary. Thanks for asking me to keep updating! It lets me know people are actually reading this *smile* and sometimes I tend to forget to update this page because I answer the emails I get instead.
Chris is back in the hospital. We are not sure what is going on, but he may have sinusitis, or he may have pneumonia. He definitely has an infection of some sort, and it is one of 3 again. Just like before, it is life-threatening. I would ask that you keep Chris in your prayers, and please pray for me, as a mom. This is very difficult to go through day after day again wondering if this might be the week or month that he may go be with the Lord. You really try not to think like that, so I would ask for prays for that simple faith I rely on, and for strength to deal with kids, expenses, driving, school, family, and the everyday. Thank-you so much, and I will keep you posted as I find out more.
Chris is still in the hospital. He had sinusitis and pneumonia, which are currently being treated with antibiotics. He has to go for PFT's (Pulmonary Function Tests or tests to check out your lungs capabilities, and your breathing)on Monday (17th) to see where we go from there. The doctors are still hoping to let him go, but it all depends on the test results. He still may have some gvh in his lungs, so they don't want to put him on prednisone until they know what is going on. So as you can see, it is all guesswork for them too :) But I have put my son and the doctors in God's hands, so I can rest. I will be on vacation (stress-free vacation to my sister's place for a well-deserved break and rest :) ), so I will be gone for 2 weeks. I will update when I get home. Blessings to you all.
Sorry I have been so late with the update. Chris is now a teenager!! YIKES!! *smile* He celebrated his birthday yesterday with family and a big steak! Chris was not able to go back to school for the remainder of the school year, but I did sneak him into school for the last 1/2 day so he could receive his "Paul Award". Before the whole school assembly, His teacher gave him a certificate for the "Christ-like Testimony" he has shown throughout his illness. The students gave him a standing ovation. He is feeling very good these days, but they have started him back on cyclosporin, because his graft vs host in his lungs is still not going away. He is on so many drugs now, we have counted 31 pills at one time for one night!! But his spirits are up, and he looks forward to Camp Sunmaker(cancer camp) in July. We hope that all will be well for this tough trooper soon. Pray for us, and for Chris. He does covet your prayers and stands amazed at the amount of people who are praying for him. We also hope to have some images scanned soon for his BMT process, and a current picture for a picture page. Thanks again, and I will update you when I feel a need, or someone gently nudges me again (big grin for Arlene).
Chris is at cancer camp at this moment, as are his brother and sister. It is so quiet here!!(Mom basking in silence) The lung specialist seems rather worried about Chris. The last reports (over the course of a month with drugs to help GVH) for pulmonary function showed that his lungs are not improving. They are working at 50% capacity. While people can live like that, and function quite well, when Chris gets a respiratory infection (which he will, all people do) then his lungs can't use the reserve that lungs usually save for illnesses, and he may well wind up on ICU, be intibated, and have all sorts of problems. The lung specialist will be talking to his colleagues at the Foothills hospital where adults have lung problems for some more insight, but at the moment he is happy to let Chris go to camp and have fun, and deal with what we can when summer is over and most doctors are not on holidays. So please keep Chris in your prayers, that no major infections or colds etc come his way for the next little while. He is happy, and overall seems quite "healthy", so I am thanking God for that and living in the moment. Praise God! Chris will also be attending a virtual school this year. He has been accepted, and starts August 30th. This will be so great as it will help if Chris should be hospitalized, or not able to attend a regular school, at least he will not miss as much school. Thanks be to God for this also!! We have so much to be thankful for, do we not? Selah!
I thought would write a quick update seeing as how it has been a few months. Chris is still holding his own, his lungs have improved slightly, so we thank God for this. He does however still have to watch out for colds, flu, viruses etc as his lungs could still get GVH and we have to start all over yet again, with him being hospitalized, etc. He has a slight cold now, but when we went to clinic yesterday, the pulmonary function tests (PFT - tests for his lung function) showed his lungs function had not decreased, so let's keep praying that it stays that way. Lord protect those little lungs!! He feels fine, and is happy, so I am happy. If anything changes, I will let you know.
Well, Christmas has come and gone, and our family wishes you all a very happy and blessed new year! Chris has (for the most part) maintained a steady pace over the last few months, with minimal hospital stays (one in December and one last night). He was having severe headaches due to high blood pressure, but that seems to have calmed down now with the blood pressure medication he is on. They are still trying to reduce his steroids, but if they do it too quickly, his graft versus host comes back into his lungs and he has problems again, so they are taking it much slower now to see if that helps. His lungs have moved upto 52-54% capacity, so we are praising God for that. For the most part Chris is doing well and is having a great time at cyber-school. Thanks again to all our faithful prayer warriors! We love and appreciate you!
Well, Chris is back in the hospital (as of Wednesday, March 1st). He has graft versus host disease in his lungs again, and was coughing and wheezing and having shortness of breath. They have put him on large doses of steroids to counter this, and it has had nasty side effects (such as diarrhea, flushing, dizziness and a few other minor ones), and they are not sure why it doesn't seem to be making his lungs any better (according to the PFT's). He is to have another PFT tomorrow to measure his lungs to see if they have improved in the last 3 days, and if they can start reducing the steroids. He is starting to get a little down, and I am just as stressed as him, cause my house is a mess! LOL Anyway, we got one of the child life specialists to take a digital picture for us, and here is the latest one for Chris. I hope you like it. This was taken on Thursday when he was still a little bit chipper :) Notice the famous "chipmunk cheeks" so familiar to kids on prednisone?
July 10th, 1998 *Update*
*UPDATE - AUGUST 10,1998*
*UPDATE - Sept 6th, 1998*
*UPDATE - Sept 15th, 1998*
*UPDATE - Sept 24th, 1998*
*UPDATE - October 7th, 1998*
*UPDATE - October 25th, 1998*
*UPDATE - December 4th, 1998*
*UPDATE - January 11th, 1999*
*UPDATE - February 16th, 1999*
*UPDATE - February 28th, 1999*
*UPDATE - March 12th, 1999*
*UPDATE - May 6th, 1999*
*UPDATE - June 29th, 1999*
*UPDATE - July 22nd, 1999*
*UPDATE - October 22nd, 1999*
*UPDATE - January 6th, 2000*
*UPDATE - March 5th, 2000*
*UPDATE - June 5th, 2000*
Sorry for the late update, I did update once in early May, but after writing 5 paragraphs, my puter crashed, so I never did get back to the update. However, Chris was hospitalized once again on Sunday June 4th. He has pancreatitus (inflammation of the pancreas) and today when I went in, he had been put on oxygen overnight, and the docs think he may have fluid in his lungs (This is a BAD thing! His lungs are still only functioning at 50%), so now I wait for test results again. I cannot begin to tell you how rough this whole thing has been for us! In May, it became our 6th year anniversary of his first diagnosis, and he has been struggling ever since. I just cannot help but think that this child has been through enough, and that there has to be a purpose for God putting him through it! (and me as well) We cannot see any purpose and we are both becoming increasingly agitated at this sickness. The cancer is gone (Praise God for this!) but the continuing side effects of GVH and side effects of the drugs he is on (still 10-12 different meds at this time), are all taking its toll on his body. He has cataracts, as well as lung problems, and he is tired all the time, and puffy, and feeling generally yucky. We have to keep on trusting God, but I have to admit it is hard. I believe I have a tiny inkling of what Job had gone through. I will continue to trust and believe in the Almighty Creator of the Universe, but this tiny child's faith is waning. Please continue to pray as you have always done, and I do thank God for each and every prayer, because I am convinced we could never have come this far without your prayers! Thank-you again, and I will update you when I find out more.
*UPDATE - June 9th, 2000*
Chris wound up in ICU Wednesday night after surgical complications putting in a central line. They wanted to get him a line because he was getting so many needles for bloodwork, and the blood was not coming out of his left arm (right had an IV). When he went up for surgery, he started throwing up ( which took everyone by surprise because he had nothing to eat or drink for 4 days because of his pancreatitus), and the fluid went into his lungs, which caused him to aspirate and for his lungs to partially collapse. He was intibated (put on a machine to make him breathe) and put on paralyzing drugs (so he doesn't move and get irritated by the breathing tube) and on antibiotics because he has a blood infection. He was basically put in a drug-induced coma. He was one sick little guy, and his chances Wednesday night were only 10% of surviving. I sat on his own little hospital bed in his room on Q cluster, while he was in ICU, and cried and cried and paced, wondering if tonight was the night God would choose to take him home. My husband had to stay home with the other children...but now I look back and wonder why he didn't get someone to look after the children for us??
Chris is a little better now than he was Wednesday, (he is still in a coma) but he is not out of the woods, and this is a terrifically stressful time for me and the whole family, as we hold vigil over Chris. I will update more when I get the chance.
*UPDATE - July 1st, 2000*
Chris has had a bad turn of events. Yesterday he was extibated (breathing tube out) and he did fairly well, although he was in a great deal of pain. I knew something was wrong, but no one else seemed to know this. Anyway, by 8:00 pm they knew he was having trouble with his breathing...shallow and laboured. By 11:00 pm they phoned us to tell us they had re-intibated him because he was just struggling too much. When I went in today, he was sedated but not paralyzed as before. He was in alot of pain still, and he is not able to speak still because of the tube. He was crying and had his mouth open in silent cries. I asked him if his back hurt..he shook his head "no", his tummy? "no", his throat? "no" hmm... are you uncomfortable? "no". I had no idea what was wrong but he was still crying. I asked finally, "Are you upset and angry at being here again?" He nodded his head. He is getting tired, and he is sick of being this way. The doc also told me that he seems to have another infection, as his white blood cells are going up even though he is on a broad spectrum of antibiotics. He may have a fungal infection. If this is the case...well, please pray it is not the case (but God's will be done).
*UPDATE - July 3rd, 2000*
Chris is out of ICU and back in Q cluster. He is progressing well and the doctors are pleased with his progress. He didn't have the fungal infection, but his kidneys were becoming bad. The doctors think it was due to de-hydration and possibly some chemo that has worn the kidneys down. Whatever the case, the kidneys are doing better now.
I am just so glad God has seen fit to allow our son to be with us a while longer. God is the God of miracles, and Chris had certainly proved this! We had so much prayer cover that Chris had no choice but to get better. *grin* I am just thankful to everyone who prayed for us all. He is still working on eating and drinking to be able to leave the hospital as doctors want to make sure the pancreatitus has resolved itself. If this is the case, then he may be home soon! Praise the Lord.
*UPDATE - July 15th, 2000*
Chris came home about a week ago. PTL. Thank-you for all your prayers and love coming our way. I truly thought I would have lost him this time, but apparently God has other plans. I have no idea why we have to keep going through all this, and I know it is really playing in my emotions, but I have to keep believing that God is in control no matter the circumstances. I have to keep putting Chris, myself and our whole family in His hands and learn to trust daily, moment by moment. This is really hard as I am only human, but with God, we don't need to rely on ourselves (thank goodness, because I really can't!). Anyway, Chris is feeling better and grows stronger daily. Again thank-you for your love and support! Keep praying I don't have to update this too soon again! *smile*
*UPDATE - December 14th, 2000*
I thought I better put a quick update for those of you who have asked. Here is his latest pic!
Chris has been battling the teen-age years more than his cancer-related things! He has this
"lovely attitude" suddenly, and Mom is quite weary of it all, but I stop and think sometimes,
"I may not have had this child to deal with at this time, so I better take the attitude because it
means I have him." His lungs are still the same (50% capacity), his cataracts seem to be acting up a
bit, and he gets stomach cramps and diarrhea, but overall, it is good. We just had our 2 month IVIG
infusion yesterday, and the docs said not to come back for a month! So we are quite happy with this.
It all means progress. I myself will not breath completely until we have passed the 3 year mark
post-transplant. September marked our 2 year post-transplant, but he relapsed 2 1/2 years after his
first one, so I will wait until 3 years are over.
So over all, all is well. Thanks for continued prayer and for asking! Blessings upon you all this most holy of seasons!
*UPDATE - April 9th, 2001*
I know it has been awhile since I have updated, but until 2 months ago, all was fairly well. I have had an extremely rough last 2-3 months. Chris is fairly healthy (overall) but he has had alot of medical problems. He has had tummy aches, and headaches, and hospitalization for stomach troubles, he has had an upper endoscopy (which basically showed all is well, but he has evidence of bad heartburn in his esophagus), and now since last Tuesday, he has started having these "episodes" as we call them, and it has been quite scary. He woke up Tuesday night complaining of feeling "funny". He was shaking, had a headache, and felt nauseous. Well we were quite concerned and my sister (Thank God for her!) felt it warranted a trip to Emerg. By the time we got there, he was having large shaking motions of his hands and legs. By the time the doctor came in, he was moving quite violently (for lack of a better word). They checked him over, did blood work etc. They had no idea what be causing it, so they just admitted him. The next day when I got there, he seemed to be alot worse, having episodes every 15-20 minutes. The doctors had neurology come in and test him, and they basically came back with the fact that there was nothing medically wrong with him. *WHAT?????* was my basic reaction. How could there be all these almost seizure-like movements, and there is nothing medically wrong with him? Well it appears that if a person has enough stress in his life, and they can't verbalize these fears and stresses, then the body will manifest it in other ways, and this is how Chris's body is reacting. Chris is unsure himself, as he feels there is no stress in his life, but how can we argue the physical symptoms? So now, we wait for the next plan of action. Chris is home, still having these episodes and away from school (for fear of ridicule and cruelty), and we wait for further instructions. The waiting is hard for Chris. He wants to know what is going on, and I really have no answers for him. Please pray God would heal his mind, ease his stress, and give me, his family, and his doctors wisdom as to how to deal with this. Thank-you.
*UPDATE - June 1st, 2001*
Here is the update for those episodes Chris was having as reported in April. Numerous tests at the hospital (including an EEG), showed there was nothing medically wrong with Chris (not seizures, or epilepsy or anything like that), but that they felt it was psychological. Chris has never really been a talker, so he hid his feelings, anxieties and fears all to himself, thus having them manifest themselves in this fashion, as the body has no other way of coping with such thoughts and stresses. Well, we were skeptical to say the least, but we had no choice. Chris was put on a drug called Elovil, to ease tension headaches, and stress. We have also seen a Christian Social worker to have Chris talk to her and to see if he can't talk a bit more about how he feels. This went well, and the social worker urged Chris to continue on in writing his story about cancer and his life, and stressed to write out his feeling and fears and worries in this book. He has since had almost no episodes (after 2 months of agony), but we are unsure whether this is because of the drug, the social worker, or a combination. We are currently in another waiting period in this.
The other thing that has happened is that Chris developed full-blown cataracts (which we were told he would probably develop due to chemo and radiation). He had cataract surgery for his left eye (the worst one)on Thursday May 31st, and all went well. PTL!! He will have his second surgery for his right eye on June 14th. Hopefully this will be all for awhile! I am going completely insane lately with all the stress and whatnot myself. :)
*UPDATE - Sept. 24th, 2001*
It has been 3 years to the day since Christian had his second bone marrow transplant!! PTL!! All is well, and his second eye surgery went well, and he is at 20/20 vision! He has to wear reading glasses for reading, but otherwise, no glasses. He went into the hospital because of sinus pain and tummy pain, but he just had sinus infection, and was a little backed up in the plumbing department (which can happen due to cyclosporin and other drugs). I have much to be thankful for, and can't wait for this Thanksgiving to share all this news with friends and loved ones. I pray all will stay well, and that I won't keep getting these thoughts that any minute now, he will relapse. I have to trust in the Almighty and lean on His strength and His peace, because it is so very hard to lean on my own. I am too frail and weak on my own. SELAH.
*UPDATE - May 31st, 2002*
Well it seems like it has been forever since I have updated anyone here, so I thought this is a best time to do so. It has now been 8 years since Chris was first diagnosed, and aside from some minor and a few major sicknesses, Chris has done very well! He is still at 54% lung capacity, and that will probably be for the rest of his life, but for the most part Chris has been healthy. Praise the Lord! He will be 16 this June, and he is looking forward to spending 4 weeks as a missionary/helper for the Child Evangelism Fellowship in our area. This is a first for him, so please keep him in prayer. I am amazed at what God has done, and is doing through Chris and his strength to carry on through such adversity. Sure he goes through the typical teenage struggles most kids his age do, but the majority of his time is spent thinking on the Lord and what he can do for Him, and thinking about volunteering (he can only start when he is 16)at the very hospital he spent so much of his life in. In high school next year, Chris will be volunteering at the hospital as part of his special program course in his school. The Lord moves in mysterious ways! Chris was wondering how he could get more hospital time in, and here the school provided a way! PTL! I am sure Chris will continue to struggle with colds and other side effects sickness as long as he is on the medications he is still on, but they are slowly being reduced, so I pray soon he will be off completely, and be able to live a more "normal" life. Again, thank-you for prayers, love, emails, and encouragement you have all given to our family. HUGS to each and every one of you.
*UPDATE - Sept 12th, 2003*
Well, to keep you up to date, Chris wound up in the hospital again in August with unknown problems. He was having leg pain, and stomache problems again. They thought he might have pancreatitis again, but that turned out negative, and then they thought he might have a blood clot in his leg. Well, it all seemed to mysteriously vanish, and he went home after 5 days in the hospital. It is these types of things that keep us on our toes and thinking we will never be through with this ravaging disease! The side effects almost seem worse than the disease itself at times. They crop up unexpectedly and suddenly, leaving you to wonder if you aren't simply going insane. But PTL, we continue, and Chris gets over it rather quickly. I just have to keep trusting and praying. Keeps me very reliant :)
Chris is now in Senior High School, looking to become a chef. His health, overall, is good. We still have bouts of sickness and whatnot, due to the continuing side effects of chemotherapy and radiation, but considering what he has gone through, he is fantastic! I will get a new picture here as soon as I am able. He is now 17, and God has seen fit to bless me with a thoughtful, caring, compassionate young man. I thank God for him everyday. Chris will probably continue to struggle with health issues his whole life due to all of the medications etc, but I thank God for choosing to allow us to have Chris for awhile longer.
*UPDATE - November 13th, 2003*
Chris is currently in the hospital battling the flu and lung problems. It started out just as the flu, but now that seems to have cleared up a bit, but left him with some residual lung trouble. I will learn more today, hopefully. He is in good spirits, and he is not in pain. He is just struggling a bit with his breathing, so they want to keep a close eye on him, given previous lung trouble. Also, today we received a sweet gift from a dear lady. I will post it below. Blessings, dear Lisa!
*UPDATE - November 15th, 2003*
Chris's lungs have gotten worse. They are giving him high dose steroids over this weekend to see if that helps, and he will repeat his breathing tests Monday morning to see if it has helped. He was at 54% lung capacity before this all started, but now is at 39%. Thanks for repeated prayers! It gets terribly hard at this point, because the rest of the family has the flu, and I am the only one not sick. I guess I get to crash later! :) Thanks again.
*UPDATE - July 29th, 2004*
It has been awhile since I updated, and for those of you who actually have followed Chris's story, I apologize.
Chris celebrated his 18th birthday, and is in generally good health. He still struggles with lung trouble, so when he gets a cold or any kind of pulmonary infection, he invariably gets into trouble. He also has problems with high blood pressure, and the doctors are trying to get this under control. Overall, given his history, he is doing exceptionally well. I am so grateful for the love, compassion and care given to us through friends, family, and even strangers. I probably won't update again for awhile unless something else happens.
*UPDATE - June 3rd, 2005*
*UPDATE - July 23rd, 2009*
Well, it has been a long time since we updated, but things have not gone well for Chris. He didn't finish college, and has since been told he cannot get a physical job due to his many health problems. He is on government assistance, and has been rather depressed lately. All he seems to want to do is sit at home on his computer. Due to his second stem cell transplant, his trigylcerides are extremely high. Normal for the average person is 3-4, and Chris gets numbers of 40 or so. So now because he has had pancreatitis twice, the doctors are very concerned about him. Because of high triglycerides, he is at very high risk of getting it again, and it could possibly be fatal. He has to go on a machine called a plasmapheresis machine. It is like the machine that you see in Jonathan's pictures for the stem cell transplant, but this machine would remove Chris's triglycerides from his body. But first, due to so many pokes and IV's etc, Chris doesn't have the proper veins for such a needle, so they have to do an operation to connect an artery in his arm to a vein in his arm. That way he would have a large enough vein to do this procedure. We have no idea how this procedure will work, whether it will take one time, or if he will have to do this once a month for the rest of his life, or even twice a month or more. It is a wait and see game again. Admittedly, for the whole family, it is a depressing thing to once more have to go through more medical stuff and worry. Is this the rest of his life? How sad to think so. It is very hard to see God at work in Chris's life, but we *MUST* cling to hope and faith. That is all we have now.
Well, for some reason known only to Chris and God, he has refused to have this procedure done. We argued and cajoled with him, but he stood adamant, so there is nothing we can do. The doctor has tried to persuade Chris to do this procedure, but to no avail. We can only hope that all works out. (Update: Apparently it is okay, and Chris managed to survive in spite of not having this procedure done).
*UPDATE - July 24th, 2010*
I thought it would be a good idea to update this page so I have a history as well as for those who have followed Chris's journey through cancer. Chris just celebrated his 24th birthday in June.
6 days ago, Chris's roommate took him to the hospital as Chris was complaining about his abdomen again. This is about 3 weeks after he was told he had pneumonia. Well, to make a long story short, that is what we were told at first. When we were waiting to see what the doctors were going to tell us, we suddenly got a phone call from a doctor that Chris was moved to the ICU because he "passed out". Her words, not mine. I thought it was rather strange that he would go to the ICU because he passes out, but who knows these days? Anyway, his dad and I decided we better get down there and find out what is going on. When we got there, Chris was on all sorts of machines and IV's and wires, and the nurse then told us that when he was in the regular unit, they had to call a Code Blue on him (which means cardiac resusitation)! His heart almost completely stopped, and he was turning purple and he went into renal failure (kidneys stopped working). They resuscitated him, and put him on life support medications and oxygen. For 3 days, we visited him not knowing what was going on. The doctors seemed totally confused themselves and were running all sorts of tests. They suspected an infection of some sort, or maybe something else to do with his heart, as his potassium levels were extremely high. Geoff and I were getting quite stressed because no one seemed to know what was going on. 3 days later, the nurse in ICU called and said Chris had taken another turn. He simply would not wake up for her, no matter what she did. Pain stimulus did not make him stir, and commanding him to wake up got no response. They ran a CT Scan and an EEG , only to find nothing. More blood tests were taken, and the doctors were not sure again what was going on. When he was still fairly unresponsive, they did an MRI. We were there before they took him, and we got maybe 1 minute before they whisked him off. He looked at me, while I stroked his forhead, with fear and confusion in his eyes, his lower lip trembled, and he said "oww". It broke my heart. That was at 8 at night. We had to go home and wait to find out the results the next day. I slept not a wink that night...actually for a few nights now. The next day when we went in to see him, the nurse said they figured out what went on. I talked to the doctor, and he said when he checked on Chris earlier that day, he was sleeping, so he didn't want to disturb him. Chris's nurse said she went in 15 minutes later, and that was when he didn't respond. The doctor figured it was either just as he left, or was happening during the time the nurse was trying to get him to respond. He had a stroke. I guess his heart has been weakend by the chemo and radiation in his earlier years (which we know because he had been seen by a cardiologist when he was small) and because his heart is weak, it doesn't pump out the blood from the heart the way ours does, and he had stagnant blood in his heart. When he went into arrest, they put him on heart medication to make his heart work harder, and thus released a blood clot that was in his heart. That blocked the artery to his brain, and that is why he had a stroke. Now, 2 days later, he is slowly recovering. His right side is weak, but slowly seems to be coming back. He was agitated last night and today, according to his nurse. But apparently that is "normal" for a stroke victim. So they put him on Ativan to calm him down. Today he is a little calmer, but he is still confused as to where he is and what is going on around him. It is very hard to see. We will be seeing him again tomorrow after church, so maybe I can update then. Please keep him in prayer. Thank you so much.
*UPDATE - June 3rd, 2011*
Another late update, but here nonetheless.
It has been almost a year since Chris's stroke. His recovery seemed (to me) to go rather quickly. It took him awhile to even realize he had had a stroke after coming out of the stroke. He was confused and scared and incredibly emotional! He would cry for no apparent reason, and keep apologizing to us for being such a pain. He also was seeing things. He told me he was afraid of the rhino running across his hospital window! This was hard to see and hear, but the nurses and doctors assured us this is rather normal for a stroke victim, and some of the meds he was on would probably cause some hallucinations. Thankfully this didn't last long.
It was during his hospital stay that we found out he also has Type 1 diabetes...oh sure, this was all he needed.
So after some time in the hospital, he came home on more medications for blood thinners, and heart medication and insulin....whew. It sometimes throwns my brain for a loop as to how much this guy has gone through, and yet his outlook on life is most bright and he praises God every day. He is inspirational to all those who know him.
So now he is living at home and just "being". He goes for walks and volunteers at different venues around the city as he is able. He will be turning 25 on June 28th!! I honestly never thought I would see this day. Thank you God.