Frustration

The past few days have been pretty uneventful. I feel like I am in the movie "Groundhogs Day". My days are so similar.

• Get up at 6:30 am, help Abby get reday for school.
• 7:15 - wake up the other 4 kids
• 7: 45 - breakfast, chores and fix the girls hair.
• 8:00 - start laundry and clean up breakfast
• 8:20 - kids to school - my sisters have been taking them so I can get ready.
• 9:00 - leave for the hospital
• 9:30 - 5:30 - hang out with John in his room, try to take him on 3 walks, play a game or two, watch a movie (maybe), watch a few episodes of "Lost", try and eat. Work on paperwork for health insurance . . .
• Home by 6 pm, eat dinner,
• 7:00 - have kids call John, scriptures study and get kids in bed.
• 8:00 - do some cleaning and get into bed.

Even though my days seem to go in circles, for John it is even worse. His blood counts are all where they are supposed to be - totally good enough to be home. But he is going in a circle of not eating, slowly adding sips, then liquids, then soft food - then throwing up again. Every time he throws up he has to wait and go 24 hours with our puking before starting the cycle over. He also has had constant diarhhea for the past 2 weeks that has not gotten better. But until those 2 issues are solved he can not go home. He is super frustrated. He is on constant nausea meds and they don't seem to help. It seems like his drinks and food are not making their way into the intestines. They sit in his stomach until he pukes and that is why all he has in diarhhea too. Liquids and food are not making their way through. His body has been through a lot these past few weeks and his body is now trying to recover. It just takes time and he is so frustrated. In reality no one has left this hospital after an auto transplant before 18 days in the hospital. Today is Johns 17th day. It is typically 3-4 weeks. So, it isn't like he "should" be home by now. We are all just tired of him being here and he wants to be home.

He has had a few good days this week and every day he seems to have a period of time where he feels pretty good. Today he has been very blah and frustrated. He was hoping to be going home this weekend and that is not happening.

CANCER SUCKS!!!

It is interesting for me coming and going from the hospital each day. I see the same cars in the parking lot, I see the same caregivers and loved ones on this floor, same patinets when we go on walks, I even predicted who would be John's nurse the other day. Yesterday we were on a walk and saw a young mom patient, holding her daughters hand (maybe around 2), walking with Grandpa. It broke my heart to see this little one with her Mom here in the hospital. I could not do it. I would make my kids come sleep in my room every night. I could not be away from them like this. It is all so so frustrating.

One of these days John will get home. Abigail is in her schools musical and it is next week. I told John I bought him a ticket for Friday night and that is his goal to be home by then. Still one week away :)

Day 14 (or day 10)

AHHH - at 2 weeks.  It has been a long 2 weeks. But in a weird way it has gone by pretty fast. It has been a stressful past few days. And of course, I am in between sisters for 3 1/2 days. John has had a bad pain in his lower left side. After a few days an x ray came back clear. Then after another day of no improvements a CT scan was done. This showed inflammation and a blockage in the large intestine near the colon!! NOT good news. For a typical healthy person it means surgery. But for John, that is not really an option at this point with NO immune system. So he is currently on a bowel rest diet. Which means nothing other than water only to take his pills. He is still on the TPN for nutrition, but is finally starting to feel hungry and wants food. It seems like the pain is a little better today. We are all really hoping this solves itself as John's numbers come up. If he has to have surgery it is pretty risky and dangerous for him.

He is still pretty nauseas and on constant anti nausea meds. But he now only throws up about 2 times a day. That should also get better as his numbers come up. Which should really start coming up in the next 2 days. If his nausea gets worse or keeps coming they will have to put a tube down his nose and into his stomach to have a constant suction. EWWW, and he does not want that. They really try to avoid as many tubes as possible. Tubes can cause infections and John has no immune system to fight it.

John seems to be doing ok overall. He is getting really tired of his room. He is supposed to go on at least 3 walks a day. But he is only allowed to walk on his floor and only the East side. So, it is not super exciting, but does get him out of his room. He has not been real up to leaving his room though with his super low energy level. It's a bad circle. Ideally John should be home in a week. Not so sure that will happen. His white blood cells have just started to come up but barely and are only at 200. His nutrifills have to be at 500 and they are still at 0. He also has to be eating and drinking, which he is not doing. And this blockage and inflammation has to be cleared.

I brought the kids to see John yesterday. They were excited to see him. Michael had not seen him since he has been here. We had Family Home Evening here in John's room :) And we took John on a walk.

I am hanging in there, one day at a time. I am going through a stage where I am super jealous of everyone that has any sort of "normalcy" to life. I look at friends and family and get kind of mad when their Saturdays are full of date nights and soccer games and basketball games and cooking and playing. I really need to not look on facebook because I get so frustrated when peoples biggest issues would be my biggest dream right now. Everything is super hard right now. I am really trying to get use to this "new normal". But new normal keeps changing so I can't get use to anything. Just keep trying and praying with faith.

Day 7 (or 11 days in Hospital)

This hospital thing is getting old :) Actually it isn't awful, just feels like the same thing over and over again and the days kind of blend together.  I can't imagine how it feels for John. I at least get to leave to the hospital and walk wherever I want to :)

John is doing ok. Yesterday was better than today. His nausea is kind of under control - well, better than it was. He is not throwing up as often as he used to, but still throws up most things that go in - including whole pills that never digest! Yesterday he had an ok amount of energy, we went on 3 walks, watched TV, played games and he was awake like all day :) Today he went on 2 short walks, we played a game. But he is having a really bad cramp in his lower left abdomen. They even did an xray to check it out because it is hurting SO bad. (he was so excited to leave the 8th floor and go somewhere else, even if it was still in the hospital). Xray was clear, so guess is it is probably gas. Kind of a wait and see situation. Because of that pain, his energy levels were quite low today. His white blood cell count is at 0 - it should stay here for a few days and then start to go up. When the numbers go up, he should start to feel a lot better. Still no mouth sores, and no infections. He does have one white spot of thrush in his mouth, but it could be worse. He has also not needed any transfusions yet and hoping he doesn't although that is really rare.

Another bit of news is that John's brother George has "passed" Stage 1 in the matching as a donor for John's allo transplant. Stage 2 has started and we should know early next week. If he is still a match at Stage 2, the he is a full match and can be the donor. His sister Christy was not a match at Stage 1 so she  does not move on to Stage 2 and is definitely not a match.

I am doing ok. I am tired and not sleeping very well at nights. I get up and get the kids ready each morning then my sisters take them to school. I finish getting ready and am usually at the hospital about 9:30 am. Our days are all pretty similar: A nurse or CNA is in about every hour to check on John, his PA comes in once or twice a day and a Dr. comes in once a day. A Dietician comes in once every couple of days, a social worker comes in once every few days, his care coordinator - Rachel, comes in once every other day or so, and he has another nurse who is kind of in charge of this stay and she comes in every few days. I try to get John to go on 3-4 walks a day, take a shower, I try to read to him every day, we watch a few episodes of "Lost" every day and usually play 1-2 games. John usually has a nap, I have a book I am reading and I am also constantly working on paperwork for medicaid disability and applying for food stamps and health insurance for Abby and I. Those are pretty much our days. I usually leave at 5:30 pm and get home around 6. John "could" be home late next week, but maybe not - we will see.

Grateful for sisters who have been here. They get kids to school, pick them up, help with homework and do dinner :) I like to be home for bedtime and to see the kids a little bit. Blair leaves tomorrow and then Emily comes Tuesday night. So I get a few days "on my own".

Day 4

The hospital counts days from the transplant. So although he has been here one week, today is actually only day 4!

Every thing is going ok. Not great :( Although nothing has been unexpected.  John is just at the high end as far as his nausea. It has been really really bad.  He could not keep anything down and was only consuming a few hundred calories a day. He never got nauseas on any of his chemo meds before the transplant.  But the chemo they use to kill his cells before the transplant is so much stronger and much higher doses.  Yesterday they had to start John on a liquid IV nutrient.  It looks like milk is going into his central line. But for a few days he won't have to worry about eating and puking it up.

I brought 4 of the kids to see him on Sunday. Michael has a runny nose and was not able to come :( It was good for them all to see each other, but it is hard for the kids to be in this little hospital room for very long. So we only stayed about an hour. We went on a walk and then the kids played on the Wii for a little bit. Saturday night there was a nice storm, but I really wanted to see John. So I brought the suburban and braved the roads, saw like 6 accidents and drove pretty slow the whole time. But I made it safely. I only stayed about 2 hours. John is always weak and tired. He was just not doing very good Saturday night and wanted to sleep.

Yesterday I was here from about 9:30-5:30. John was super tired and rested most of the day. I got him to go on 2 short walks and eat a little (this was before the IV nutrients started). He has trouble staying awake to even have a "real" conversation.

This morning I got here about 11 am. I had to take all the kids to a dentist appt this morning. Even though he was up most of the night puking and with diarrhea, he was feeling ok when I got here. We have gone on a very short walk, and played a game of gyn rummy and he ate a little soup.

Every thing is "normal" for what he has gone through. Luckily he does not have any mouth sores and we are really hoping he does not get them. He has not had any infections yet either, which is good. It is really hard to see John not him self. No desire to eat or talk or get up and move around. I have not seen him smile in days - he will kind of give me a fake half smile. He has lost some weight, but no idea how much. It is hard to tell because he is also on a sodium chloride drip for hydration.

It is hard for the kids, but they are doing ok. I am so grateful for my sisters who spoil them a little while they are here helping. Lauren just left yesterday. They had so much fun with her and cousin Lyndie. Now Blair is here. I am glad that I do not have to rush home to get kids from school. Days I have to do that I am only able to be here at the hospital for 5 hours or so. The kids really miss John. And we all can't wait for him to be home.  We are hoping he is able to come home in 2 weeks - but that is super optimistic :) It might be 3 more weeks. The magic number is his nutra fills.  That number has to be at 500. But first it has to hit 0 and then work its way back up. Today it was around 40 on its way down.

We are just starting his second week here in the hospital. Week 2 is always the worst as far as side effects and energy levels. We both know that it will get better - just taking it one day at a time.

Autologous Transplant

It has been a long past few weeks:

I am blogging from LDS Hospital, John just got his Auto Transplant :)

On February 12 it was actually the 19th anniversary of our first date. We always celebrate that day and this year we both totally forgot :( Two days later we realized it had passed. That is what has happened to our lives. I seriously only remember the things I have to or the things in my calendar.
We had a quiet at home valentines day. John couldn't go any where. Abby was babysitting, we put the other kids to bed and watched a movie - nothing super exciting.

When we decided to do this "tandem" transplant, we knew John would have to quit his job. He did and Valentines day was his last day. He decided that if he has a few good weeks in between transplants he does not want to spend those weeks working. We had an appointment at the Hospital Friday the 15th. John had some tests done and we met with a Dr. We also decided to apply for Medicaid for John (and Abby and I). Medicaid will cover his Allo (donor) transplant 100 %. We will put him on Cobra ins. through his work until that comes through. But to qualify for medicaid you are only allowed one house and one car. No matter how big your family is. We decided to sell John's car.  It might sound silly, but it was really hard for me. I knew it was the right and smart thing to do, just not easy. Kind of letting go of that second car and that lifestyle. That was supposed to be Abby's car and we only had 8 more payments on it. But selling it cut out that payment, cut car ins in half and with what we made we paid off 4 credit cards. So, in the end it saved us about $700 a month. We had also paid off my car with our tax return. So we are making head way figuring out our finances with out John working. So, that night John sold his car back to the dealer (sold to dealer because we still owed on it and he had lost his bill of sale, so it had to go back to dealer since we were in a hurry).

We had a quiet 4 day weekend home with the kids. Saturday John had the kids shave his head :) He will lose his hair with this chemo so he wanted the kids to be part of it. They all got a turn with the clippers at a #1 and then I finished it. (Pictures are on my computer at home so I will add them later). Monday we actually went and picked up a rental car?? I know, makes no sense. John's car was in his name only so he had to sell it before going into the hospital. But we needed a 2nd car for while he is in the hospital. My sisters are taking turns coming to help at home and need my car to get kids to and from school. And I need a car to get to and from the hospital. It still saves us money this month. Then I took the 4 younger kids to Ogden to the Treehouse Museum, since my sister Lauren was flying into the Ogden airport that afternoon. Abby wanted to stay home with John.

Lauren and her 2 year old daughter Lynden are here this week. The kids are having so much fun with Lyndi. They haven not seen her since our family reunion in San Diego summer, 2011.  Lyndi was only 9 months old then.

Tuesday, February 19 John and I came to the hospital. Tuesday and Wednesday John had a high does of a chemotherapy drug called melphalan. It is an IV drip and takes about an hour. Just once each day. That chemo wipes out his fast dividing cells. He has done ok with it. Wednesday night he had a hard night and threw up several times. When I got here in the morning he was super tired and  did not feel like eating anything. Eventually I got him to eat a little bit. We even watched some "Lost" and played some games (our best dates seem to be at the hospital :))When I left he was feeling ok. (I try to be here at the hospital from about 9:30-5:30 each day) Yesterday was actually his "rest" day. No chemo, no transplant.

Today, Friday, February 22 is transplant day. I got here about 9:30. Right after getting here our Stake President, Curtis Ivins came to visit. It was great to visit with him, he was here about an hour. Then they started pre meds on his IV drip (tylenol, benadryl, and something else). The American Red Cross came in with John's 2 bags of stem cells. They defrost them right here in the room and the nurse hooks the bags up to his IV line. Each bag only takes about 10 minutes, so it does not take long. The nurse said that some people get pale and flushed, nauseas, and have shortness of breath during the actually stem cell insertion. John did good. He is just super tired (literally snoring next to me right now). They did give him oxygen and that is it. An interesting "side effect" is during the transplant and after for a few days the patient will smell like creamed corn/tomato soup :) It is from the chemicals used to freeze the stem cells. I definitely smell it, but not awful right now. It takes a few days for the smell to work its way out of his body.

So, now we just wait!!! He will probably feel worse before he feels better. He will almost certainly need a few blood transfusions and platelettes. His counts will go down for few days. He may get mouth sores in his mouth and through his GI tract. He may be pretty nauseas. So the next week and a half or so may not be very fun. I am hoping that since John has had it pretty easy as far as chemo side effects, that it won't be too bad. Time will tell.

I am doing ok. I am super tired. I am so grateful for Lauren and all her help right now. But I only sleep like 6 hours a night or so - I need more than that.  I am sure we will get into a routine. But, this is hard and scary. I have to go on and be a mom and a wife. But it is hard to juggle everything right now. It is hard figuring out all our finances and how are we going to survive? But it is starting to work out. John is applying for disability and if he is on medicaid and disability we should be fine. But all this paperwork is a PAIN!!

I am so grateful for my testimony and faith right now. I do not know how any one goes through this with out the gospel. I know the Lord is guiding us through this and is watchful of us. I know we have amazing friends and family and neighbors. I feel so blessed with the people in our lives.

Now that the kids know . . .

Ok - so, here is a long story:

About 2 weeks ago John and I met with one of the Dr.'s at LDS Hospital - Dr. Asche. I had not met her before and really like her. We were supposed to be going over stuff for the stem cell collection. Which we did. But, she had something else to present to us!

So, the plan had been for John to have his first stem cell transplant using his own stem cells on Feb. 22. Then when the cancer came back (a few months to a few years later) he would have the donor transplant. Well after some research from the Dr.'s they were not sure this was the best plan. They starting researching a "tandem transplant". Basically you do the donor transplant right after his own stem cell "rescue"! The Dr.'s really feel like it is the best hope for John. There are many many risks involved, but also could have a potential cure.

We both thought about it for a while, we prayed and fasted and thought hard about it. It is always John's choice, and we wanted to do what is right. So, in the end, we agreed with the Dr.'s!!! This means a lot of changes:

• John will have to quit his job. 
• We will no longer have his income.
• We will no longer have benefits, including health insurance offered through his company!
• We will have to seriously look at our financial situation and really really cut back. We do have another source of income each month and we think we can live off it, but do have to make many changes. But we won't have health insurance! working on figuring that one out?
• John will be in the hospital for 3-4 weeks for his first rescue transplant. Then home for 30-60 days. Then back to hospital for 1-2 months for donor transplant. Then home for 1-2 YEARS for recovery!!!! During that time he will be in and out of the hospital fighting Graft vs Host disease as his new stem cells "try" to adjust to John's body. They may attack his organs, skin, heart, liver . . anything they want. That is why this is so risky. Some things the Dr.'s can help with, other things they can't. 

We really do not know how we are going to do this. But we really feel like it is what John is supposed to do. This is totally turning our lives upside down even more!! Did not know that was possible. We knew he would have to have this transplant, we just thought it would be at least a year away.

Stem Cell's and a bad week

OH MY - We have been busy busy busy.  First of all we have been hit with another round of "fevers" :( A week ago Abigail had a fever for 4 days. Then Isaiah got it for 4 days, now Michael has it, and today Isaiah's came back)!!!! I am going crazy. I can't get anything done, I can't go any where, I can't run my errands, I can't go grocery shopping!!! It has not been a good week!! Ok - now that I got that out:

John has been OK. Barely OK. His neuropathy is still pretty bad. It can kind of be controlled with pain meds, but it really really hurts him.

• Last week Friday morning we had to start his shots to prep for stem cell collection. Home health brought them by Thursday night. Friday morning we went to Rachelle's (my sister in law who is a nurse), so she could show me how to give them. He had to have 2 every morning. I was a little nervous, but was surprised that it wasn't bad at all. I had no problem giving them and never even bruised him. 
• Last week Saturday John was having back spasms - they actually started Friday morning but were getting worse. I ended up having to take him to the hospital. It was like he was having contractions and would have to stop everything and have to breathe through them. We spent 4 hours at the hospital and met with a PA.  They did several tests and could not figure out what it was. In the end he was sent home with stronger pain meds and to see what happened. Gratefully after 2 days they stopped.
• On Monday he had to be at the hospital at 7:15 am. Gratefully John's brother Jeff works downtown and was willing to go in early and take John to the hospital. I have no idea how I could have done it and gotten kids to school on time. John was getting his PICC line switched for a central line in his chest. They needed the bigger line for his transplant. His surgery was postponed 3 hours because they were busy saving a life :)  No biggie. After I got the kids to school I drove to the hospital and we played Phase 10! He finally went in and it went just fine. They do it under conscious sedation. He was supposed to recover for an hour and then go home for the day. But they had run his lab work that morning and his labs were great. During his surgery the BMT (Bone Marrow Transplant) Unit called down and said they wanted him upstairs when he was done. They were supposed to start collecting stem cells from him Tuesday but wanted to start because his body was ready. That ended up to be a very long day for John. He was set to be at the hospital for 3 hours and was there for 14 hours!! He went up to the BMT Unit and they hooked him up to the machine to collect stem cells. They collected over 5 million that day which was amazing. Especially since he had not even had all the necessary shots. There hope is to collect 10 - 15 million over 5 days. 
• On Tuesday Jeff took John to the hospital again. He got hooked up to the machine and had a great day - as far as collection. He was on the machine for about 5 hours and they got 16 million stem cells. The good news was he was done. The bad news was that he was not feeling well at all. He was super nauseas and literally puked while hooked up to the machine.  We got home that afternoon and he was really weak and tired and not feeling well. Nothing sounded good to him and he could not eat anything.
• Wednesday he was so glad to not be going into the hospital. He was not feeling well. (And by this point we now had 2 kids at home with fevers). John laid around all day and rested and really fought eating. He was doing ok drinking but food was not his friend. 
• Thursday was a continuation of the same thing. Other than he also spent 4 hours at the dentist. All dental work has to be done prior to the transplant. He was able to eat a little that night and was feeling a little better.
• Friday he was not feeling well but did get up and ready. He was able to go to the temple for a little while. But it took a lot out of him. But he ate a little. Over these past few days he might have consumed 2000 calories in 3 days.
• Yesterday and today he has been starting to feel more like eating. But still not normal amounts. But at least he is getting food in him. We are pretty sure it is a side effect of the neupegen shots and mozibil shots which he had for his stem cell collection.

So that is what this past week has been. We have been blessed with great friends, meals, cards, treats, car rides. I am so so grateful for our friends and neighbors around us. They are amazing.

I had a very hard week emotionally. I constantly was on the verge of tears. I am SO tired of all the complaints for everyone. So tired of making food and throwing it away because John and the sick kids don't want it. So tired of solving everyones problems and not getting enough sleep. So tired of taking care of everyone all day and night. SO tired of some people who are pretty insensitive to all we are going through. Frustrated that we had a ward adult Valentines activity that John and I could not go it. So tired of feverish kids . . . I had had it. This is HARD! And I think one of the hardest things for me is knowing it will only get harder. I am doing better today. And I do count my blessings. But some days, weeks, are just so hard.