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!