After a long long day we now have all of the particulars hammered out. A viewing will be held on Wednesday, March 14th from 6-8 pm, at Larkin Sunset Gardens, 1950 East 10600 South. Funeral services will be on Thursday, March 15th at 12 noon, at the Crescent Park Stake Center, 11350 South 1000 East.
The obituary should be in the paper tomorrow and Wednesday and also a link http://larkinmortuary.com/obituary/christopher-michael-groscost
We would like to say a special thank you to the many family, friends and professionals that have helped in so many ways. We are so blessed to have you all in our lives!
For just a moment my family was perfect.......and then that moment ended. This morning at about 4:30am I got a call from Jason who was at the hospital. He told me that Critter was having some blood pressure issues and was being transfered to the PICU (Pediatric ICU). He said he thought Critter was probably ok and I could stay home if I wanted to. I layed back down in bed and felt panic and the strongest desire to be there so I called my mom and left for the hospital. By the time I got there Critter looked really swollen and was not fully concious. I said to Jason "This looks more than just a little bad" he told me he had gone down hill fast.
We struggled to get him settled. Critter had a ton of fluid on in lungs and in his heart. We hoped if we could get some fluid off his lungs and heart he might recover. They decided to intubate him to help him breath and expand his lungs. They were worried that the stress of intubating him would cause him to go into cardiac arrest. We found a nurse that from the oncology unit that we loved and asked him to help Jason give Critter a blessing. They both cried but made it through the blessing. The docs were all ready for the worst when the intubated him and then the intubation went smoothly. Critter stabalized with a breathing tube and we all relaxed a little. I told Jason to go take a nap because he had been up all night. About 5 minutes after he left they decided to adjust his breathing tube and get a better NG tube. They pushed the sedation and he started moving awake. I ran over and talked to him reassuring him that I was there and it would be ok. I watched the color drain out of his face and his heart rate stop. The nurses immediatly called a code and within seconds we had a room full of doctors and nurses pushing meds and doing chest compressions on him. I immediatly called Jason and he was there within seconds of the calling the code.
We had a nurse practioner standing next to us explaining what they were doing and what it all ment. Then the doctor in charge looked over at us and said they would continue until we told them to stop. He was a very kind knowlegable doc. We asked some questions about our options. After a little bit longer it was obvious that he was not coming back and we told them to stop. The worst words I have ever heard are "Discontinue CPR."
What really touched us is how just outside our area there was a group of nurses from the oncology unit crying and watching us. When we finally went upsairs to collect our stuff everyones eyes were red, the housekeeper gave me a huge hug and just said I know. And I know she did. She talked with him every day. He would purposly throw food on the floor just for her. It was so touching to see how everyone cared for us.
After they stopped CPR we stopped all his IVs. Unhooked him from all machines and we held him and rocked him. We told him how brave he had been and how much we loved him. He was so bruised and blue it didn't look like him.
I hope someday we will get to heaven and see that our pain on earth was worth it. I hope someday this pain will fade. We are confident we made the right decision to stop CPR but the memories of our happy little Critter bug are everywhere. His hat is still hanging by the door. We carried out his "pack pack" that he had wanted to bring to the hospital with him. We miss him so much. There is such a hole in our family. We are thankful to everyone for all the love and support they have given us through this whole journey and we know that we will never be able to repay you. We love you Critter and hope you are pain free with your Heavenly Father.
Whew this week has been long. It has been exhausting taking care of both Critter and Ruby. Critter wants to be held a lot. He has six medications that he has to take by mouth every morning and night and talking him into taking them is a task. Yesterday at about 3 in the afternoon he still had 2 medications from the morning that he was refusing to take so he got an NG tube. Placing the tube is so miserable and then he gags everytime you push meds throught it. It takes about 45 minutes to push all of his morning meds through his NG tube. Last night we pushed a little too fast and he threw them up so we had to start all over again. It all just sucks. Jason and I thought we were prepared for this round but I guess you can't totally prepare emotionally. Our first night I was feeding Ruby and trying to keep Critter happy and Critter threw up all his meds all over me and Ruby was screaming because she was hungry and tired and I lost it. I called Jason in tears. Sometimes it all just sucks! But I got everyone in bed and calmed down. I also started giving Ruby her Nupegen shots. The shots help her bones produce more stem cells so hopefully she wont take such a big hit when they pull cells from her. I was nervous to give my own kid shots but it hasent bothered me. It is a really little needle and she only cries for a second. I am so thankful to be blessed with such a patient, wonderful baby. I could not have handled any of this if she was a fussy kid. Someone knew I needed a break with this kid. Ruby lives in the bathroom and Critter has decided when she wakes up he has to climb in her bed and snuggle with her before she can get up. The bathroom has become a very popular place. See money doesn't matter Ruby is popular even though she lives in a bathroom. Its personality that matters! Monday is transplant day! They will harvest Ruby first thing Monday morning and then Critter will recieve it Monday afternoon. I will post all about it.
Well we are here! Line placement went well and we are moved into our room. Today we start some antibiotics as a precation, also our heart meds, liver meds, anti viral meds, antacid meds etc. We also start a med called Dilantin. Dilantin is an anti-seizer medication. The Chemo meds that they start tomorrow can cause seizers so they medicate him to try to prevent them. Today is day -6. We count down, day 0 is the day of transplant then we count up. Me and Jason liked this picture because of the plane flying in the backround. It says "Welcome to Pre-op!" The walls are painted very nicely. We may not have been able to go on a cruise but we did enjoy some time at the pre-op resort! We felt right at home. Here we go!
Friday was a busy day. We dropped off the other kids at grandmas houses and started into the hospital. On our way in the Nurse Practioner called. She wanted to let us know that his echo he had had the day before had been unusual and we would be altering his chemo schedule and we needed to meet with a cardiologist. She told us we would discuss it more when we arrived but she wanted to tell us over the phone because I guess the cardiologist had called and left a message on our home phone and she wanted us to hear it from a live person instead of an answering machine.
When we got there we met with Dietary who gave us a rundown of our after bone marrow diet. Basically everything needs to be cooked, no fresh fruits and vegetables. They also want Critter to have his own stuff like his own peanut butter jar that others don't dip into. His own package of crackers that others aren’t sticking their hands into. His immune system will have such a hard time determining what is considered foreign and what is supposed to be its own body that it just doesn't know how to react and won’t fight really common bacteria. Next we met with a Pharmacist. He went over all the chemo drugs and other drugs Critter will be taking. None of them are very nice and all of them have bad side effects.
Next we met with a nurse about the care he will need. Things like he will have to shower every day and be weighed twice a day. Now I know this doesn't sound like much but last time any movement was so painful for him. I showered him every other day and did a bed bath in-between because he is so week he shakes when he stands and it is so painful and miserable. Weights are the same way. We usually end up holding him then they weigh us and minus our weight to get his correct weight. It’s just miserable. He will also have to do mouth wash 4 times a day. This will be pretty awful too. I posted a picture of me and him from last round. This is what he looked like when he started feeling better. His mouth is full of spit and he wouldn't swallow. Every now and then he would open it and slowly drool out but even spitting hurt. I can imagine how awesome mouth wash 4 times a day is.
After all of that we met with the cardiologist. Critter has decreased heart function. His heart is not pumping out as much blood as it should be. This is heart damage caused by having so many rounds of chemotherapy. We knew a lot of the drugs he was on might cause heart damage and it looks like he is now suffering the consequences of 7 rounds of intense chemo. They are going to start him on some heart medication and monitor it while he is in the hospital then we will follow up after bone marrow. The drugs for bone marrow may do more damage but it seems to be a necessary evil. This will probably not get better and he may be on medication for his heart for the rest of his life. I guess only time will tell.
The one good part about all our meetings was the bone marrow doctor. When we reviewed all the procedures and discussed all the risks and benefits he was very optimistic. He was excited that Critter had a perfect sibling match. He talked about how because her cells are so immature they should react well to his body and be able to grow and adapt better. Overall he gave us the impression that this will work. Sometimes after meeting with docs we leave feeling a little helpless but we left PCMC Friday feeling nervous about the next month but confident about the prognosis.
So because of the change in medications the plan has changed a little. We will be admitted Tuesday for line placement, start chemo on Wednesday, Ruby starts her shots on Thursday, and transplant day will be Monday March 12. So we get to relax for one more day at home and then it is the beginning of the end. Thank you to everyone for all your prayers, love, support, gifts, encouraging words, etc. We have been overwhelmed by everything. We couldn't ask for better family, friends and neighbors. Thank you all.
On Thursday we had appointments for Critter and Ruby. I brought my mom so I wouldn't have to carry Critter and Ruby at the same time. I am so thankful to have such a supportive mom. As we walked into the hospital she started getting "snow alerts" from Alta on her phone. It turned out to be a pretty sweet day up the canyon but she didn't even complain about being stuck in the hospital with me. When we got to clinic we weighed and did vital signs on both kids. Critter found some skeleton gloves before leaving the house and refused to take them off so we did the oxygen monitor on his toe instead. Once we were in our room we had the nurse, the doc, the bone marrow coordinator, the phlebotomy team (2 ladies) plus me, Critter, Ruby and my mom. It was packed. They drew a ton of blood from Critter through his line so no big deal then the phlebotomist drew a ton of blood from Ruby. They had to stick her 3 times to get all the blood. I held her binky and Critter sat on the table next to me and kissed her free hand. He kept saying "I love you Roobs" and " It's ok Roobs Just a little owie" then what got me is when he said "Your so brave Roobs." It’s all the encouraging things we say to him. It was really touching to see him care for her. You could tell he sympathized with her. He acted so much older than his age. It was really sweet. After clinic we went to the RTU and they put him out for a bone marrow aspirate, LP, hearing test and dental x-rays. Yep sedated for dental x-rays (he won’t sit still). They found that his chipped tooth was abscessing so they pulled it. Now he has a huge hole in his mouth. This picture is actually really good. He looks like he could be on the show Swamp People. I just keep telling myself...it's just a baby tooth....it will grow back. Oh well.
Monday we went for our Echo, Ekg and a neuropsych eval. Echo and EKG are all old hat. It did take Critter a little bit to settle down but eventually he did. The neuropsych eval was interesting. They are doing this eval to see if he is on track developmentally. I thought he was behind but he tested on average. They said considering how much time he has spent in the hospital he did really well. One thing that was really interesting was the doc asked him "Critter what color is grass?" I was sitting behind Critter and I shook my head. The doc asked again then looked at me and said he doesn't know his colors. I said well no but watch and I said Critter what colors are your lines. He lifted his shirt and said this one? I said "ya what color is that?" He said "Blue" I said "Right what color is the other one?" He said "Yellow" I said " Good."What color is blood?" He said "Red." I know he should know some colors by now and when we are at home I have been working on them, things like what color is this frog, or what color is your blanket. I didn't think he knew any colors but when the doc started asking about colors I realized that he just need things he is familiar with. The doc’s next question was "Critter what comes in a bottle?" He said "medicine." It was really interesting. He also did normal things like the doc showed him a pic of a fork and said what is that? Critter said "a fork" then pointed to the doc and said "You eat your dinner!" It was really funny. All in all I'm just glad he isn't way behind. Tomorrow is Ruby's clinic day. We meet for a history and physical and meet the bone marrow doc representing her. There has to be a doc representing the donor and a different doc representing the receiver. All in all things are going really well. Critter is happy and healthy at home. It’s a real bummer that we have to go back. Being home is so blissful!
We love being home. The first few days are always really tough. He has a lot of tempertantrums. Its really hard for him to adjust to being home. I'm not sure why except that I can't hold him all the time like I do at the hospital. He had a really hard time taking his oral meds when we got home. We really only had one day of taking them at the hospital before coming home and we were really forcing them down his throat. Once we got home he was still in a fair amount of pain and we were forcing his meds down his throat and it was pretty miserable. We think maybe we pushed a little too hard to come home another day in the hospital would have been a little better but oh well we are home and things are better now. He has 4 meds he takes every morning and night and as long as he has his sprite ( he calls it his coke) and a little time to talk himself into it he will take his meds.One of his meds he takes 4 times a day so it seems like I am always trying to get him to take something. He is really happy now at home. He gets tired if we do to much but he is pretty happy. He keeps telling me..."I'm happy I'm home mom" its really cute. I posted this picture because he watches Mickey Mouse Club House A LOT and Clara Bell the cow likes to make Moo Muffins. Critter wanted to make Moo Muffins so we made some muffins together. He is eating again and he is a pickey 2 year old but at least he is eating. I posted this picture to show how cute he used to be. We have tons of appointments to get ready for bone marrow. Yesterday we went to the dentist which turned into me and the dentist laying on him and prying his mouth open. He chipped a tooth last year and they are worried that during bone marrow transplant without an immune system he might have some kind of infection behind the tooth that will cause problems. They have decided to pull his tooth. I understand that it is the best decision I just think he will look a little funny. He is already bald! Now he will be missing his front tooth! So I wanted everyone to see a cute picture of him. I keep telling myself its just a baby tooth.
Well tomorrow is day 28 and we should be going home! They moved most of his meds to oral today and if he can take his oral meds we get to go home tomorrow!!! Home for valentines day!! I am so excited. This round has been harder than any other round ever has. His body has really taken a hit. Today is the first day he has even really walked for over two weeks, it has been hard to watch him go from a strong little boy to being so weak in such a short amount of time but we look forward to fattening him back up while he is home for the next three weeks.
I was thinking ( because rocking a sick child allows you the time to do that, think) about what I have learned during cancer and this is what I have come up with...
Faith is everything. Without it there is no hope.
You don't have to get dressed up to talk to the doctors. Medical decisions can be made just as you are. In your pjs, through a shower curtain, without make up, with out a bra on, with out your eyes open, with your mouth full, with morning breath, through tears and everything in between.
Chemo sucks! No if ands or buts about it.
Children are expensive.
One "I love you mommy" is worth all the money in the world.
The Lord will never leave you...even if he says nothing he is still there.
Patience, patience, patience.
It hurts as much to watch your children suffer as it does to suffer yourself.
If you schedule benadryl at nap time it makes nap time soooo much easier.
Sometimes the best medicine is for someone to just hold you and rock you to sleep.
Sometimes the soul will ache so much you think your heart will not be able to beat again. It is almost an insult to the soul that the heart keeps plodding along. It is then that you realize that they are two separate things bound for different worlds.
Sunshine and fresh air heal the soul.
Never judge anyone. You don't know what they might be enduring.
Everyone has faith shaking experiences. Recognize them and take your concerns to the Lord. If you don't turn to him there is nowhere else to go.
It's funny to hear people tell you you are strong when you know you are not.
You really can gain weight on carnation instant breakfast.
Well we found out that it is not the bad bug. It's a bad bug but if given a choice between the two we choose this one. It's a form of Ecoli. It is pretty resistant to antibiotics so if they can't get the infection under control they will still pull his line but so far he is fever free and all of his blood cultures are coming back clean so I think we are in the clear! I am soooo glad we can keep his line! It is a huge relief to know we won't be torturing him with regular IV lines.
I think we finally got his pain under control also. We switched his morphine to Dilotted, another narcotic pain killer that some people do better on. He sleeps most of the time but he doesn't seem like he is in as much pain. I didn't post any pictures because to be honest I don't have any. He looks awful! He is really swollen and drools all the time because he won't swallow. He doesn't even look like my little boy. Our goal for this week is to grow some white cells! Once we get whites back his body will heal. Monday is day 20 and usually we see cell growth on day 22 or 23 so I hope this week will be better.
Sick again. Well last weekend critter got a fever and it just went down hill from there. First problem: he has what they call mucocitis (I have no idea how to spell it) basically the chemo attacks all fast growing cells like the cells that line cheeks, throat, intestines, stomach everything between in and out. So he has sores in his mouth and all the way through his system. It causes a lot of pain. He wont swallow even his own spit and the sores secrete mucus so it's like the worst cotton mouth ever. He throws up gobs of mucusy spit and complains of stomach pain. Problem 2: he has had some diareah so they cultured it and he has C Diff. A bacterial infection in his intestines. This bug is common to people who spend a lot of time in the hospital and that have suppressed immune systems. It causes pain, diareah and fevers. More yuck. Problem 3: the most serious. They have found a bad bug in his blood. They know it is a gram negative bug but not the specific kind of gram neg bug. They are worried it is a certain kind of bug that adheres to plastic. This bug ( sorry it starts with an S and is very long so I can't even try to spell it) if he has it would live in his central line and every time they give anything through it it showers bacteria into his blood stream. The fix for this is to pull his central line. We would have to have regular IVs through the rest of this round and place another line before bone marrow. In short he is really sick! Sleeps a lot and when he is awake he is in pain. We started a morphine drip today and he will get blood and platelets today so I hope it will help. We gave him a blessing last night it was really special because he woke up for it and was calm and quiet through the whole thing. I am so thankful that I was blessed with such a good baby. Ruby is happy when I need cheering up and sleeping when I need to hold Critter. She is a miracle in so many ways. Usually when counts come back his body heals and our little Critter returns. We are counting the days. Hopefully sometime next week things will be looking up.But for right now he is completely miserable.
We have five more doses of chemo before we are done with chemo and are here just for count recovery. Last time we were here I was always trying to "do without" stuff from home just because we were so crammed into our room, but this time I have decided that anything that makes us feel more comfortable is worth having! So I think I have more of my house here than at home! Ruby has all the baby toys I thought she could use! I hung her from the bathroom door and everybody comes in and laughs at her happily bouncing away. (Doctors that don't have kids really get a kick out of it). I am so happy with Ruby up here with me. It makes a dismal hospital room feel infused with life. I miss my kids at home but instead of feeling separated from them I feel lucky to at least have half of my family here. Everyone was so excited that we finally had a girl and I think the gender doesn't even matter anymore. We are SO blessed to have a beautiful happy baby to bring joy into our life when we needed it most. Things don't seem as dark as they did when we first relapsed. Critter gets a big breakfast everyday...but is eating less and less everyday. Its the same old stuff. A week into chemo and he starts to require oxygen at night and quits eating. I know it will get worse and he will start to loose weight and he will get more tired and all of that. But I also know that his counts will recover and when they do he will slowly start to feel better and eat more and breathe better. Its becoming so predictable that we can finish the doctors sentences or say them before they start. Its all a waiting game. I am nervous about bone marrow but I just want to get started. The sooner we start the sooner we can finish. Right now Critter sleeps in in the mornings (he slept till 10 this morning) and is happy and surprisingly active during the day. All is well.
This weekend we played Monopoly with the boys. Jason kept drawing a chance card that said he owed "doctors fees" and to "please pay" some amount of money. It was kinda ironic. We all had a good laugh about it. But he did end up winning the game so if we can just beat cancer I don't care what it costs us.
Well we were admitted today. We came in at nine and we were unpacked and watching TV at 9:45. We are getting good at this! We thought Critter would cry and freak out, especially since when we came to our appointment the other day he asked everyone numerous times if he could go home. But today, to our surprise, he acted excited. He set up his blanket and stuffed animals in his bed and asked me to turn on "Mouse" (mickey mouse club house). We then had an echo (this one is a base line so they can do another later to make sure they don't damage his heart, the drugs he gets this time are really hard on the heart) and a CT scan (last time with his infection he got little pockets of infection in his lungs and they wanted to make sure it had cleared up). They gave him versed ( a sedative that makes you feel drunk) before the CT scan and he was SO funny. He laughs at everything and thought it was hilarious when the nurse took a blood pressure on his leg instead of his arm. They also placed an IV in his hand for the CT scan and once he got the versed he thought that was funny too. He tried to count his lines (he can usually count to 3 but when your two and drunk its really hard)and he thought it was really funny that he had 3 lines now! All in all it was pretty good. We got some great news that he is in remission after the first round! That means we get Ara-C, Doxarubicin, and Etopiside this time for 8 days. He has had all of these meds before so I'm hoping for nothing too unexpected. You would think that I just sit all day up here but with Ruby here and Day 1 with Critter I feel like I haven't had 2 minutes to sit and breath. I just hope everyone sleeps good tonight.
Well we had our bone marrow aspirate today to see if we have achieved remission. If we have we get the same chemo drugs that we had last time in round two, if not we get new drugs that the docs tell us make them really sick for a long time...so of course we are hoping we are in remission. We won't get results until Tuesday because Monday is a holiday. No matter what happens we will be admitted Wednesday morning.
I also spoke with the bone marrow docs. It turns out a perfect match is harder to find then I thought. They have only one candidate and they still need to do more testing to see if they are a "perfect" match and the doc said she doesn't think they will be a match...so it looks like they will be using Ruby. I am excited because I think she was meant to save her brother. The Lord works in mysterious ways and the timeline of her birth and his relapse is nothing short of a miracle. We are so thankful to have the Lord as our companion on this journey.
And as for Ruby...the Nurse manager has hummed and hawwed about her staying up at the hospital with me this round but I am tired of waiting for an answer and have decided to take her with me until they tell me not to. I'm not sure if they will really tell me no so I'm just going to do it until they really put their foot down. I just can't stand the thought of only seeing her on the weekends so I'm avoiding it for as long as I can.
For now we are excited to do absolutely nothing as a family this weekend!
We love being home! After 25 days in a little hospital room my little house feels like a mansion! The first day home Critter had a hard time adjusting. He is number 3 on the list again instead of number one all the time and he has a hard time with it. It is really hard to know when to stick to your guns and let him cry it out in his room and when to give in because he is probably not feeling well. We had behavior issues in the hospital too. He yelled at a nurse to get him a coke one day. So he didn't get his coke for 6 hours until he said please. You feel rotten telling him that he has to be polite to get food and drinks and when he says he would rather starve you say go ahead and try I'll just run nutrition through your line! HA!
At home the other day we had a fight because he wanted to draw blood out of his line. He has seen it done enough he thought it would be cool to play with his blood. I hid all the syringes and he threw a temper tantrum screaming "I want my blood" and I was telling him his blood had to stay in his body. I felt like an idiot having that fight. This picture is when he threw a fit about something and wouldn't put his clothes on. He had antibiotics due and usually he sticks them in his pocket while he plays but because he was refusing to wear clothes he put his hat on and told me to clip them on his hat. I finally said whatever and left him in his room naked.
Even after all of the bratty stuff we would much rather be doing it all at home. Every day he gets a little better with the rules and he feels great for the most part. The docs took him off his TPN and sent us home and told us to call in a day or two if he didn't eat. I was really nervous but once he got around his brothers he started eating! We were so happy and even though he doesn't eat much he drinks carnation instant breakfast a lot and he isn't losing weight so we are OK.
Well were supposed to go back on Friday but our last labs said his anc was 300 which means his body is still recovering. They don't want to admit us until his anc is over 8-900. The new plan is a bone marrow aspirate on Friday to see if we are in remission and then they will admit us on Wednesday. So more time at home! YEAH!