Urgent Prayer Request

Dad's low blood pressure continues to cause problems. The doctors feel that it may be because his arteries were hardened by the cancer. They are giving him a medication that may be able to repair some of that damage and raise his blood pressure. This medication NEEDS TO WORK. If it doesn't he will have to go back into ICU to receive a drug that will raise his blood pressure, but that is not a long term solution, and without a long term solution they can't do dialysis and obviously his heart will eventually shut down.

We need a miracle here.

What Next?

I would rather deal with minutia. For the last few days, John's heart has been beating fast. It has been running anywhere from 118 to 140. At first they were not too concerned as it was gong in a normal rhythm and they thought once they got some of the toxins out of his system it would resolve. Yesterday evening they discovered that it is now not a normal rhythm so today they are going to stick a tube down his throat and do an ultra sound of his heart. It seems that this fun began after they put in the temporary line for his dialysis. They say that this sometimes happens due to the line being just a little too close to the heart. Hmnmmmm....nobody told us of that risk before putting the line in. I asked if this would clear up when they backed the line away. The resident said that it does not always go away and that sometimes it becomes permanent and that the problem with it is that because the heart is not going steady, sometimes clots can form so they have to then give blood thinners. I told her that this was just wonderful. On top of a renal diet we would now also have to have a diet that would have to balance his INR's. She said that they will try to not have to give them and that maybe shocking the heart would work. So, I just wonder what is next? When you think you have seen it all and have enough coming down on you, it just seems to keep on raining. I don't think we will be out of this hospital any time soon. Anyhow, it is one more thing that we would like you to pray about. We are sure hoping that this is not permanant. Thanks guys. Don't know what we would do without you.

Blah

Hi all, I thought I'd send out an update on how Dad is doing and give Mom a little break...

I talked to them on the phone and Dad is feeling pretty cruddy. His stomach hurts and he has diarrhea again, plus he's nauseated and just feeling all around yucky I think. (Cruddy and yucky are very technical medical terms.) It's not anything unexpected, but it isn't great since Dad is off his food again. Mom said some fancy word to me with mucus in it, which I know means that the mucus membranes in his body are probably irritated and inflamed. He is taking a lot of drugs and just had radiation, so it's not a big surprise that he is feeling so poorly, just a big disappointment.

His counts bottomed out on Saturday (no, I couldn't say for sure what they are counting, but I think it's white blood cells), and came up a little, which means (without all the fancy technical words that my mom can remember but I can't) that his immune system was almost totally gone but is hopefully on the rise again. That could help him feel better, since his body can't heal his membranes, including the ones in his stomach and intestines, without an immune system.

Please pray that he will feel better soon. I know it is hard on my mom when he isn't feeling well, and when he isn't eating. I also know that it is hard not to feel hopeless when your body is feeling miserable so please pray for my dad's (and mom's) spirits. Pray that they will feel God's love and healing presence very close to them over the next while.

I hope I got that all right, if I didn't, that's okay, you can still pray and I'm sure God will figure out what we're talking about.

Hanging In there

I don't have a lot of new news. The doctors are still doing tests to get to the bottom of the acute kidney failure. Now, I know that I did not use that word yesterday but I really, really didn't want to freak people out before I have an understanding of what that means.

We spoke more to the kidney specialist today and because it is acute that is actually a good sign. There is more chance that his kidneys will recover and return to how they were functioning before all of this. John's condition is stable at this time and if it does worsen they will take him to dialysis asap. They are not doing a lot of I.V. and diuretics because they don't want to push his kidneys but be very gentle with them. They are still hoping that the dialysis will not be necessary.

We were a bit concerned today because the kidney specialist was concerned about finding proteins in his urine, the kind of protein that his myeloma spills, the kind of proteins that did all the damage in the first place. These proteins are called something, something light chains. When I refer to them in the future I will just call them light chains. Just the mention of this had papa bear running way ahead of things and he was thinking that his cancer had decided to get real bad, all in just one short week. He was tested thoroughly during the last two weeks and while there is some activity, there is no way on the planet that it is gone to that type of an extreme in a week. I was having a hard time convincing him of that so I asked for the resident transplant oncologist to come and explain the cancer side of things because the kidney guy really only sees the kidney side of things. She assured John that his cancer has not progressed in a week but did say that probably everything combined stressed his kidneys out.

1.Light chains
2.full body irradiation (killing off cells that have to be filtered out of the kidneys)
3. The transplant with incompatible blood type (more dead cells that the kidneys have to filter)
4.Tracolimus (the anti rejection drug that they had to give him lots of to get the level fairly high in his system so that he won't reject the transplant.

The diarrhea was caused from the junk they gave him to lower his potassium levels and really did not do the job seeing as how he kept puking it up. Tonight they are going to get it lowered by giving him insulin. First they will give him lactose to raise his blood sugars.

He had to have blood transfusion today because his hemoglobin was low. This is nothing new and not and unusual thing.

Any way, to sum it all up, his spirits are doing a bit better after all the explaining. We really would like prayer for his kidneys and especially that the trocolimus and his kidneys could some how make friends. He will have to be on this drug for a considerable amount of time and possibly forever although at much lower levels. Pray that he will start peeing. I know that you all have prayed for a lot of different things in your day and I am sure that this is a first but let me tell you, when the man starts peeing, I am going to celebrate! Susan, could you phone pastor Kevin and maybe a few more members of our church family. Just knowing that they are on this would make me feel better.

You can phone John. I know that mom would love to talk to him and that she is worried. Susan, could you pass his phone number on to her. I will leave it on your facebook private message board.

Thank you all for all your virtual hugs and well wishes and prayers. Stuff like that really helps keep me going and reminds me that most people are good. It must be that the cranky ones take jobs as taxi cab dispatchers.

Oh and thanks Becky for editing that post. I am sure that I could not have possibly have got it all correct!

And They're Off

Yes, Aunty Margaret, you're right. September 10th was a typo.

Mom and Dad left today for Seattle by way of Vancouver Island. As ever, it's hard HARD HARD to say goodbye for four months, but we'll make it. I'd say "It'll be over before we know it," but that's just being silly. It'll drag by and nothing will feel quite right until they are home again.

So, as usual, we covet your prayers. Sometimes it's easier for us to push aside our fear and sadness and stress, but it's there and our family is under a great deal of strain. Cancer is so hard... SO hard, and it takes away so much from all of us. Please don't stop praying for us all through the months ahead, and of course, especially for my mom and dad. Pray that this transplant does what it's supposed to do so that we can be together again soon and well on the way to getting back to normal. (Or as close as our family can get. Heh heh.)

And Mom and Dad, in Ben's words, "I'm definitely going to miss you." Drive safe.

(On the up side, I'm pretty sure you will all be seeing a lot more in the way of blog posts over the next while... Although, most of mine will probably be about my kids...)

What's Going On?

Since people have been asking, and since I know how busy my mom is, I thought some of you might like an update on what's been going on with Dad in the last few weeks.

Dad was supposed to be back in Seattle by now, according to what they told him when he left anyways. They told him that he would have two or three rounds of chemo, and then he'd travel back to Seattle for the donor transplant, but by the time he was done the three rounds they'd changed their plans.

As things stand right now, they'd like to do three more rounds of chemo and then another Autologous Stem Cell Infusion (or Autotransplant) in May, before he goes back to Seattle sometime around August. The autotransplant would be like the one he had last January where they gave him a stem cell transplant using his own stem cells. Of course, he is not especially enthusiastic about this, (an understatement I'm sure) since the last one was very hard on his body if you remember. And things like this always contain some element of risk.

The thing is, because he has high risk Multiple Myeloma, and because his last remission didn't last as long as the doctors (and we) would have liked, they feel that another autotransplant would give the donor transplant the best chance of success. Hopefully the autotransplant would give Dad a long enough remission for the donor stem cells to take hold and then keep the cancer in remission. (You may be wondering why they didn't just give him the donor transplant right after his last autotransplant? Why did they leave him waiting around for almost a whole year till they finally sent him out to Seattle? One reason was because they weren't expecting his cancer to come back so quickly, and the other reasons... Oh, let's not talk about those. I'll just get angry.)

So that's where things stand right now. As far as I know, Dad still hasn't decided for sure on another autotransplant, but he's already started on these latest rounds of chemo. Each round takes three weeks, so he'll be around here for a while yet. (Which, I have to confess, makes this selfish girl pretty happy. I really want Mom and Dad to meet my new baby before they have to leave again.)

Please pray that the right decisions are made and that when it finally is time to go back to Seattle my mom will have her new Canadian passport.
Here's a picture of Dad just for fun. It's Ben and Sam's favorite. Right at this moment Sammy is screaming "Ahhhhhhhh! Lookadat! Dat's Grampa! Grampa's on the horse! Ahhhhhhhhh! Dat's funny! Grampa's funny! He's riding dat horse!" (And so on...)

Speeding Things Up! Maybe?

Round three is finished. They have moved the date of the bone marrow biopsy up by more than a week to Feb. 9. That means that we could have the results back by the 16th. That means that we could be leaving any time after that. We have a few things to do before we leave.

1. Change oil in the car
2. Buy a couple of new tires. We really don't want to wreck our winter tires and we need a couple of new summer tires so we really need you all to pray that we won't run into any bad winter driving conditions. I am not sure if it is worth trying to save our winter tires. I am maybe going to try to talk John out of this.
3. Renew my travel insurance.
4. Do our income tax or at least make sure that we have everything with us so that we can get this done. Pray that everybody will get us our T4's in record time. I guess Mike can mail it to us if worse comes to worse.
5. Make sure John's prescriptions are all filled to the max
6. He has a dental appointment

I am trying to itemize everything here, that way I won't forget things. Can you think of anything? I am going to phone Union Bay next week. Pray that they will have something for us. I really like the location and the place. We feel comfortable there. I am going to start packing next week. I don't want to be rushed. I should start making a list today. Eeeeeeeek!

Hang On To Your Hats

We are home. We had a nice trip. The roads were good on the way home. We caught colds. John is sleeping. I feel better today than I did last night. Last night I had the blankets piled on, a hot water bottle in bed with me and I still could not get warm and I ached all over. So far John seems to be weathering this cold O.K. I hope that continues. Sam and Ben are sick today. Poor guys.

John went to his appointment at the cancer center today. He is doing good. We did have a bit of a bomb dropped on us today. Because his Multiple myeloma is high risk to recur Dr. V. has decided the best route to take at this point is to do a donor transplant. Hang on to your hats folks. All you siblings out there are going to be notified and will be tested to see who is a match. If there is a match the transplant will take place in Seattle in approximately half a year at the at the Seattle Cancer Care Alliance. They don't like to wait until the cancer recurs before doing this. Even though they do transplants in Calgary apparently they are not taking any new cases there at this time.

We will have a lot of things to organize for this. We need to get passports just in case we have to fly and cannot drive there. I need to get my permanent resident card so I can get back into the country. My citizenship application will take at least a year to process. I have to get an American passport so we will get to work on all of that ASAP!

We will have to live in Seattle for about three months so we will have to rent. I went on line today and figure that it will cost about 1200 to 1400 dollars a month for rent. Pray that I can get in a lot of extra hours of work this summer.

We may have to make more than one trip to Seattle. I am hoping that we will be able to avoid this scenario but sometimes they have you come in to consult then go home then come back for the transplant. I feel numb. Somehow we will get through all of this.

No Day Pass

I stayed home this morning hoping that John would get a day pass again today. Angela took John back to the hospital yesterday evening with our car. John just phoned and said it was a no go. I guess his potassium levels are a bit high and his creatinine levels are very high. His kidneys are not very happy with the chemicals they gave him yesterday. They want him to stay put while they try to get these levels adjusted by tomorrow for the transplant. I am sure they will try to flush his system out. Please pray that his kidneys will improve by tomorrow. The potassium is easy to fix. They can just give him the dirt drink. I am going to go have a shower, eat some lunch and then Mike will take me up to the hospital. Angela will meet me there and I can reclaim the car.

Getting Better Again!

John is feeling much better and hardly coughs at all. Yea to antibiotics and thanks to God. The Cancer Center phoned today. John will be admitted for the transplant on Jan. 14 so we have a week to kick around here. Thats O.K. by me. It gives me a chance to get caught up with the house work and get things ready at a more leisurely pace plus get totally over my cold and rest up.

I got the upstairs tree down today and the whole upstairs cleaned. Tomorrow I can start on the basement although I kinda hate to take all the decorations down. John is downstairs now watching a movie with the tree all lit up cozy like and seems to still be enjoying that. I was trying to figure out how I could just leave it all up and it would be all ready for next year. It is so tempting. That could prove to be very confusing for the grandkids though.

Becky is having a very bad week. Today she got a phone call from home. Harv and Shirley have been coming over to take care of the cats. Today they noticed a very bad smell. Her fridge quit working. Everything has gone rotten. She will have to go home to that mess. Can you pray for her that she would have no more bad things happening. I think that she has took about all she can cope with for now. They are going home on Sunday. Pray that they will have a good trip home.

Fever

Dad has a fever. He REALLY doesn't want to go to emergency tonight, but it's 38.8 and Mom says if it doesn't go down in an hour with some Tylenol he's gonna have to. Could you pray?

John Caught the Cold

I don't know the implications of this yet. Perhaps he will make a speedy recovery...perhaps it will put him in the hospital...perhaps it will postpone his transplant for a bit. There are some things that you don't know until they play themselves out. He sounds pretty congested. I am hoping that this cold will be totally gone by Jan. 2 when he sees Dr. V. That is only 4 days away so I have my doubts. I felt a little stuffed up on the 26th in the afternoon and thought it was my allergies so I guess I didn't go into seclusion fast enough. (I had a whole Christmas dinner to cook that day) I should have told everybody "so sad to bad, you are on your own and gone to my room." I should have moved myself to Jonathan's house.I am kicking myself for all of this. I feel very discouraged and feel we risked his health for Christmas parties. It is also hard on Jonathan because they sacrificed and stayed away so John could be healthy.

Noah Is Sick

Somehow, somewhere the little guy picked up a bug. Normally this would make us sad because it means that we don't get to see him. This is very frustrating because when one person gets sick it usually means that it has to work its way through the family. This means that sometimes we don't get to see any of them for about a month. They had just got rid of the last bug and we got to see them only a couple of times. This means that we probably won't get to see them for Christmas. This means that we possibly won't get to celebrate Christmas with them until after the transplant. It all depends on when John gets admitted to the hospital (early January) and if this bug decides to work its way through the mommy and daddy too. Please pray for a miracle. We were so hoping for us to all be able to be together and nobody to have to stay away. This is heard on Jonathan, Mellisa and Noah as well as us. I wish...Oh how I wish....

Kidneys

The last chemo has set Johns kidneys back. He is having water retention problems. Pray that in the next three weeks that his kidney could rebound and could be ready for the transplant. When he retains too much fluid his lungs have a tendency to fill up, kind of like an asthma attack. His creatinin counts are higher than they have been for awhile.

9 Second Thermometer

The last couple of days John has had a bit of a sore throat. He may be coming down with a cold. He doesn't feel sick other than the sore throat. Pray that it doesn't develop any further. I talked to his nurse before we left the hospital. His white counts are very high. She said he would probably be O.K. but just watch him so I have been shoving ye ole thermometer into his mouth frequently. He can't complain as much as he did before. I bought him a new one that processes in 9 seconds. If he does complain I only have to listen to the whining for 9 seconds. Why did I not buy a 9 second thermometer sooner? He used to sit on the couch and bluster every 9 seconds "is this stupid thing done" Ha...not a peep out of him...sigh...

We went to Jonathan's and Mellisa's for supper last night and then to the Forestry Farm to see the Christmas light show. Jonathan had got a free ticket from work. Noah was delighted...he would not stop talking...it was fun.

Harvest Complete

John spent about nine hours today getting his stem cells harvested. They had a very nice recliner chair for him to sit in and television to watch. The two technicians were wonderful and very amusing and helped pass the time. They stayed over time to make sure that we got enough cells to do two transplants. They were able to get the minimal amounts for these transplants but not the maximum. What that means is that he will be neutropenic for two to three days longer after the transplant than he would be if he had been able to have the maximum amount of stem cells harvested. We are happy to have reached this goal. If they had not been able to achieve this they would have had to prime him again and do another harvest in January. He would not have had to do chemo for that. Dr. V. could always decide that he wants to do this still. We will see.

Angela helped Dr. V. remove the central line out of Johns jugular vein. (She assisted) She enjoyed doing this. I was quite happy to leave and not watch that. She is very tough. I went to Safeway and got all the prescriptions filled and did some grocery shopping so we don't have to do that tomorrow. John gets to come home tomorrow! Yeah! Whew! That is so good to have behind us. Everybody breath out now.

Pray that John will really get built up for the transplant and that he will go into that healthy and strong. Pray that his body can take care of anything infections. Pray that his jaw would be completely healed and would not cause anymore problems. Pray that he would be able to have the pamidronate to strengthen his bones without any complications. Thank God for the harvest of his stem cells and for taking us this far and for being patient with me when I become afraid.

Tuesday Updates

I stayed in town last night I was worried about getting snowed in. We were supposed to get 20 cm. of snow so I stayed at Angela's place. It is so nice having her just 5 min. from the hospital. I can practically roll out of bed and be there. I am glad that we did not get the storm. Angela had to get my mom to the eye specialist today and a truck load of snow would have made that difficult. That went good. I had my appointment with the nose specialist. He spent about three minutes with me to tell me that the Cat Scan was normal (good) but that I have viral damage to the nerves in my olfactory center. If my sense of smell does not improve by March it is doubtful that it will come back. He said that there is nothing that they can do but to come back in March to let him know how it went. Ha! Why? There is nothing that they can do. Why waste the tax payers money on me coming back so he can tell me again that there is nothing they can do? I don't understand the logic of this.

We got better explanations today from the doctors about what is going on with John. For the tender spot on his jaw, they thought that maybe there was an abscess but the ultrasound came back good. They say it is an infection though and they will keep there eye on it. His pimple is getting worse and they will keep there eye on it as well. His white counts are beginning to inch up so in a few days he should have a least a partially functioning immune system.

They had to give him platelets today. Those counts were down to 15. They should be over 100 somewhere! He had to have Benadryl with that so he doesn't react bad. He slept all afternoon. Zonked out.

As for the lack of stem cells, Dr M. thinks that it is due to being so neutropenic and having infections is so hard on him. His body is trying so hard to get a grip on all this everything is going toward that. They are going to try with the stemgen for a few more days and then if there is not a marked improvement they will go with the other drug. The most urgent prayer request is that they can harvest his own stem cell and that God would heal his infections.

Becky brought him a fiber optic Christmas tree she got from Wal-Mart. He loved that. She figured since he is not allowed to have live plants or flowers that should cheer up the place. It did. I love it as well. She also gave the nurses some chocolates. They loved that. I would like to give them some baking to thank them, so I am going to try to whip up a batch of butter tarts before John goes home. They have been so good to us.

I felt very discouraged yesterday. I am sort of up and down. Today I feel more positive. I am finding it difficult staying on an even keel and not being fearful so you can pray for that. When I get like this I tend to lose my focus. I lost my car in the parking lot today. This was not a large parking lot. I almost left to report my car as stolen! Yeesh! I must have been quite a sight wandering around that parking lot. I just got my directions totally mixed up. I was totally frozen by the time I found it. Baby it is cold outside!

Happy Hanukkah

Come on Stem Cells!

Well, I got to visit Dad. I just couldn't bring the kids, since they still have some booger action going on from their last cold. Actually, I'm sitting with him in the family room right now. (He says hi.) We had Saigon since the hospital brought him an un-nameable meat substance for supper. Yum. Saigon. I say any excuse is a good reason to break out the spring rolls.

Enough about me though... Dad's feeling pretty good. His fever is down, it's usually around 37.3. (He was 38.6 when he came in on Saturday.) His neck is still store. Still no word on what that is, but the word on the street seems to lean towards some kind of infection.

As for his stem cells... The counts are still at zero, which means there are no stem cells to be harvested in his blood stream yet. The word on the street is that the fever may be the reason for that. They are going to stay with the same injections till Wednesday. If there are still no stem cells they will look at other options.

The first option is to try a new drug to push the stem cells into his blood stream. This can only happen if his kidneys are strong enough.

If that doesn't work then they look at some of the older methods of getting stem cells from his bone marrow. We are praying that the injections work since older methods are more intrusive and would be harder on Dad.

If that doesn't work then the last option would be to get stem cells from a donor which would be much riskier, involve a longer hospital stay, and would not be able to happen in Saskatoon.

So pray that the injections start working.

I hope I got that right. Mom and Dad are both sitting here, so you'd think they'd help, but Dad's ignoring me to chat with Mike about construction and Mom'a ignoring me for her puzzle. (Ang is NO help at all since she's consumed with trying to force all of us to play CSI: The Board Game.)

Back Up To His Old Haunt

John had to stay in emergency from6:30 p.m. yesterday to about 2: p.m. today. He is back on 6100 and has a phone so you can give him a call. He is not feeling too bad and the fever is down so the antibiotics are working. They are giving him the Cadillac of antibiotics. He had his stemgen injections today so that is continuing. He is having sweat attacks but that seems to go with the drop in his blood counts. He had to receive two units of blood today because his red counts got too low. This is not unusual for a chemo patient, nor are the fevers. he does have a sore spot just under his jaw, very tender to the touch. They are going to check into it more tomorrow via ultrasound.

So...for tomorow we have:1. blood work 8:00- Cancer centre (they can just wheel him over) 2. Stemgen injection 3. Possible line insertion to hook him up to the harvest machine. His pic line is not strong enough for that. 4. Ultrasound for jaw pain 5. Appointment at eye specialist for Chris. I feel like canceling that but John says no! That reminds me to find a pair of sunglasses because Dr. M. will probably dilate my eyes. The only good thing about this appointment that it is at Med. Arts bulding just across the river from the hospital. Pray that I get in and out of there super fast because I hate to not be at the hospital making sure everything is going O.K. Things can get missed. Today emergency was supposed to give him his new pain patch and did not. I did get the nurses on 6100 to get that took care of so he wouldn't get too sore.

Tonight I got three phone calls and I am amazed at how many people are praying. This has a calming effect on me. I guess God knew that I was going into high stress mode and needed reminding that He is there.

One other thing that you could pray for is that all our family would be healthy at Christmas. We so much want everybody to be able to get together and nobody having to stay away. We find this aspect of the Cancer treatment, making John so vulnerable to infection the hardest to deal with. We miss everybody and not being able to do things like go to the Christmas banquet or see our grandkids because they are sick.

Anyway...till tomorrow...

Admitted

John has been admitted to the hospital. They have started antibiotic I.V. and taken all kinds of blood cultures. They don't have a bed for him tonight on the ward so he has to stay in emergency. They will bring a hospital bed down there for he so he doesn't have to sleep on a stretcher. Pray that the antibiotics will take care of any bug that could be growing in him. This may sound ridiculous but he has a pimple in his nose. Something as simple as that can cause a lot of trouble when you have no immune system. Pray that his white counts would bounce back quickly. Pray that he could have patience. It is very hard for him to be in the hospital. The stem cell harvest will continue as planned. He does not require anymore chemo at this stage in the game until the transplant so they will continue the with the harvest. Pray that he can get some rest tonight and that the nurses would take good care of him. If any of this post is wonky...I am tired...my eyes are crossing and I am not going to proof read this.