The weekend

Over the weekend Davin had a lot of changes. He started to be awake more, which meant that the nurses wanted him to get up and walk more. He really didn't like getting up and moving and still wasn't wearing anything but the hospital gown top. He still had his cathater and didn't feel like getting dressed at all. Chad was the one who got Davin to move the most. I don't know how he did it but he would talk to him and motivate him to move when no one else could get him to do anything. He had a hard time walking and wasn't putting much weight on one of his legs. We ended up getting an ultrasound of his leg to make sure there weren't any blood clots and drainage in his hip that would make it hard for him to walk.

 

Davin's tummy also started to get really distended and he had a lot of gas build up after the surgery which wasn't going away very well because he wasn't moving very much. So after they had given him the ok to eat whatever he wanted on friday night the surgical team decided to put him back on the no liquid no food diet again. He didn't have much of an appetite so it wasn't that big of a deal for him but it is hard not to be able to give him a drink of water when he wants one.

 

On Friday Liam was able to come up to the hospital to see his brother for the first time. He was really happy to see Davin and loved running around the hospital looking at all the fish on the walls and floors and riding in the cars. He even got to eat some mac and cheese in the cafe while he was there. He also got to come up on Sunday when Davin was feeling a little better and moving around more. The boys both got cars and we went for walks up and down the halls and they even went outside on the balcony for a little bit. The boys loved being able to play with each other for a little and Davin ended up being really tired after all of his visitors left and slept most of the evening. 

 

 

On Sunday Davin was able to accomplish a lot of goals. They were able to remove his cathater and he was able to go potty by himself. Because of the enlarged bladder they did ultrasounds of his bladder after he would go to see how well he was emptying it. The first time they did it he had emptied everything and we were really hopefull that he wouldn't have any problems with his bladder. The next few times weren't as good and the urologist was thinking that we were going to have to give Davin a cathater at home three times a day to make sure he was emptying all the way. If he was emptying then we could start dropping it down to two times a day and then one. And hopefully his bladder would just return to the normal size and work how it should.

 

Davin was starting to move a lot more and was acting a lot better and we are hoping that we will be able to go home Tuesday or Wednesday. Yay!

The day after the surgery

The next few day after the surgery we had a lot of people come to visit Davin. One of the first people to stop by was our home health nurse Cheryl. She is really nice and Davin really likes her. She is really good with him and he has gotten really comfortable with her accessing his port and he even helps her put the blood in the tube and mix it up and down. Davin always plays games with Cheryl and hides in his forts that he builds in the front room so when she came to see him he couldn't go hide so he decided to pretend to be asleep. Silly kid!

 

The next visitor we had was Dr. Bean. She was really nice and brought both the boys books. She always gives out book at their well check up and so she said she had to run and get books for the boys that morning. She didn't get to see Davin awake at all but said that he was looking good. Davin slept most of the day and was only awake for a little while. Grandparents and Tyson and Holly came to see him but again he was asleep for most of it.

Chad and I were able to talk to the oncologists today about the tumor a little more and find out answers to more of our questions. We are still worried about the part that is still there and wanted to make sure it wasn't going to be a problem. There are still cases that are abnormal and weird but they said they don't think it will spread anywhere else in the body. It is what it is and it isn't going to go from being benign to cancerous or a different type of cancer. They said it is mostly benign so it really shouldn't grow very fast if it grows at all. So they are expecting it to stay around the same size and Davin will have it at the bottom of his spine for the rest of his life. We will get the full pathology reports in a few days but they really aren't expecting it to be any different then the biopsy.

Davin doesn't like to move much and is sleeping most of the day but the nurses still want him to try and move as much as possible. We don't want him to get pnemonia or anything. He sat up a few times and sat at the edge of the bed but didn't do much. They started him on a liquid diet in the afternoon and soon moved it to a solid diet but he didn't really feel like eating much. He had lots of water and a bite or two of pudding but that was it. He even took some med. oraly which is good so that we can get him off the morphine drip.

The Surgery

The morning of the surgery was a little stressful. I thought that I had done a good job packing and getting everything ready so that we didn't have much to do in the morning but I was wrong. There are always last min. changes and the last min. things that need to be packed like all of Davin's blankets and stuffed animals and that just takes a while. We needed to be at the hospital early that morning and were running late packing everything into the car and making sure Grandma and Grandpa had all the instructions for Liam. When we finally left we only had 30 min to get there on time. Well, most of the time it takes 45-60 min to get up to the hospital but because we were driving with everyone who was going to work it took a little longer (90min). I was stressed because we were an hour late. We got checked in and they rushed us through preop because he was suppose to go back for surgery in 5 min.

We got back to the waiting room and sat down. This is Davin's favorite part because the tradition is to build a lego while we wait for the doctor. We didn't have much time so we told Davin we wouldn't be able to finish it all but we could start and finish later after he felt up to it when he was done with his nap. As we were doing the lego the nurses informed us that the operation in the operating room we were suppose to go in was taking longer than they thought and it would be another hour before they would be able to take us back there. Luckily we have an awesome boy who doesn't need med. to calm down and he was just happy to sit and continue working on his lego. The original surgery was scheduled for 9:30 and Davin ended up going back just after 11.

The surgery went exactly as planned. It took 4 hours, and Davin's incision is from hip to hip. The doctor said he had to cut the tumor in half to get it out. Because the tumor was so big and was where it was Davin lost enough blood that they ended up giving him two transfusions during the surgery. The doctor was really happy about how everything went but then informed us that his bladder was enlarged probably from not emptying all the way because it was so stretched and had so much pressure on it from the tumor. We were going to watch it but they were going to have a urologist come look at Davin and tell us what we needed to do to make sure his bladder would work correctly and hopefully make sure it wasn't because of a nerve.

When I went back to be with Davin after he was awake he was just really calm and mostly sleeping. The nurse thought it was really cute and kept saying what a good boy he was. The little boy next to us wasn't happy at all. He was screaming and crying and yelling at all the nurses trying to help him and trying to pull out his iv's and stuff. When the nurse called up to talk to the nurse at the room we were going to be staying at she told her not to worry that the noise wasn't from Davin and that she was getting a really good boy. :)

 

After the surgery Davin slept a lot. He couldn't eat or drink anything and we just had little swabs that we could get wet and rub around his mouth when he wanted something. They set up a morphine drip to control the pain and he even had a button that the nurse could push to give him an extra dose if he was in lots of pain. That night I came home to put Liam to bed, and Chad stayed up with Davin. Chad and I traded off nights at the hospital and at home. We wanted to both be able to see both of the boys and figured it was easier for Liam to have one of his parents home with him at night then to have him spending nights at different grandparents houses. It was a long day but it was all over, and now we just have to get better.

MRI Results

After the MRI we went up to Primary Childrens to get the results and figure out what the next step in Davin's treatment was going to be. Davin slept the whole way up there and was sleepy when we got there. Once we were in our room he started to wake up more and he was acting really grumpy and saying that his throat hurt. He kept getting meaner and meaner until he stood up and said he was going to throw up. He did in the garbage and then sat back down. After he felt a little better but through the whole visit he was really sick. He ended up throwing up 3 times. At the end of the visit the Oncologist felt really bad for him and said something about it and I told her that he never throws up. After all three he has thrown up a total of 5 times in his life. It was really sad to see him so sick. While we were there they gave him some more nausea med and that finally made him start to feel better.

And back to the results. It took a while to get them, we had to wait while the radiologist was finishing doing the report. We talked with one Dr. and she told us that it looked like the tumor hadn't shrunk very much and so they were probably going to just take it out but the surgeon was still looking at it and then would let us know. The surgeon actually came up to the room a few min. later and our other oncologist Dr. came in and they both talked with us. They told us that they didn't have the exact measurements but the tumor shrank about a cm. in one direction, which wasn't very much at all. So the chemo wasn't doing what it needed to so there wasn't any reason to keep doing it. The next step was to take out the tumor. The only problem is that it is still wrapped around the base of his spine. The surgeon told us that he would go in and take as much of the tumor out without getting too close to the spine. He said that doing a surgery around that area was often more damaging that what the tumor might do. So we will take out most of the tumor and then watch the stuff around his spine. Davin will end up having MRIs every few months to see if it is growing and how fast it is growing. If it is affecting Davin in any way we will reevaluate and see if he needs more chemo, radiation or if we need to do another surgery to get the rest out. The oncologist thought that any of those other treatments were not very likely. She said that most of the time because the tumor is mostly benign that it wouldn't be growing very fast and wouldn't cause him any problems and that he will probably grow up always having it around his spine.

So in the end Chad and I thought it was good and bad news at the same time. We both were really just ready to be done, and not have to worry about it anymore. And in a way we kind of are, but there is always the chance that we will have to do something else in the future. The surgery is scheduled for Wed. and he will end up being in the hospital for 5-7 days. Davin goes back and forth between being excited to get the city out and being scared. He keeps telling me that he wants to watch the doctor take it out, but Chad and I have told him that he will go in and take another nap and he won't feel anything and just wake up with a sore tummy. He seems to be ok with that and hopefully he will be a perfect little boy again.

MRI

On Friday morning I took Davin to Riverton Hospital to do another MRI. I love going there because they only have one patient at a time and you have a lot more one on one with the nurses. One of Davin's nurses was going to be in charge of giving him his medicine and watching him while the scan was going came in to access his port. They had asked if he was good when his port was accessed and I said yes because he is always a good boy for Cheryl our home health nurse. She came in and said "I have never accessed a port on a real person before. Do you mind if I do it or do you want her (she points to a nurse standing next to her) to do it. She has done a lot of them and is comfortable doing them." I knew Davin was a really good boy so I told her she could do it for him. She said "great" but I could tell she was a little nervous. She got all the supplies ready and started doing it. Davin was a perfect little angel and kind of walked her through the process while she was doing it. She did a great job and I think it is actually the nicest looking that he has had with all the dressings that they put on. Davin was great and still doesn't like to be put to sleep. He always fights it so much and they have to use a lot of med. The scan was long (about 1.5 hours)  and then the same nurse brought him to the recovery room. He took a while to wake up and I got to talk to the nurse for a little while. She was a very interesting lady. She has done a lot of things in her career. She graduated when they still had the white uniforms and nursing hats, so she has been doing this for a long time. She also said that she also got to be a life flight nurse for 30 years. Davin woke up and was great. He got to eat a little bit of a popsicle and oreos before we left to go get Daddy to go up to Primarys and talk with the Oncologists. It was just funny to me to think that the nurse that had done so much and made life and death decisions was the same nurse that was so timid doing the port access. It was fun to see her be able to find out it isn't that bad. :)

2nd Cycle of Chemo

On Friday the 31st we went to the clinic to start Davin's 2nd cycle of chemo. We had to get up early and leave early to be there at 8. It was really early for all of us and we ended up being 20 min late. But when we got there we were the only ones in the clinic. Davin wore his new shirt with some sweat pants that he loves (his comfortable clothes). He was very helpful for all of the nurses and knew exactly what to do. While we were waiting for the nurse to come in and access his port we had some breakfast (powdered doughnuts) and Davin had it all over his mouth.

When the nurse came in to access his port he was a little nervous but he did a great job and it was all over quickly. After that the social worker for the clinic came in to talk to Davin. She asked him what kind of toys he wanted to play with while he was here and he told her legos. She also brought him some doctor stuff to play with. That was his favorite! We played doctor basically on and off all day, but she got to stay and play with Davin for a long time. He had a thing to access ports and hooked to an IV fluid bag and we had syringes and put medicine/water in it and everything. I think I had about 5 ports and I think Dad got a few too.

We got all hooked up and moved into the big waiting area of the clinic where everyone else would be later that day. Davin got to choose where to sit and we made camp and started playing. It was just the beginning of a long day. Davin got to do a few pictures with some dot paints and we played doctor some more, we read some books that the social worker gave to us and played on his leap pad. He even got another visit from Elliot. He has so much fun seeing that dog. I love that he gets to wander around the hospital and visit everyone.

A little bit after we started the second chemo drug (we had three to get that day) Davin started to not feel so good. He put on his hat and got out his star wars blanket and watched some movies. He started to really not feel good and we ended up giving him all of the nausea medicine we could give him. I don't really think it helped and he was just really tired, bored and miserable. He never threw up but he just wasn't happy. Chad and I were both really happy when we were finally able to go home. We were the first ones to get to the clinic and the last ones to leave. And we got to leave at 5 again so we had to drive in rush hour traffic again. Davin stayed awake for half of the ride and then finally gave up and fell asleep.

When we got home he played and we had a fairly normal night. But because Davin had a nap in the car he didn't go to bed forever! We were up with him trying to figure out how to make him go to sleep until midnight. The next morning he was feeling pretty good. He was excited to have Grandma and Grandpa Cloward come up to see him. Davin and Liam even sat in front of the window for a while waiting for them even through they wouldn't be there for a few more hours.

 

Since then we have had fairly normal days. Davin has felt really well again and was off the nausea medicine by the next day. We have started doing the shots again and he really doesn't like them. The first time we had to do it he was really good and didn't fight but he gets really scared of it hurting and doesn't want to do them everyday. Hopefully we won't have to do them very long and he can stop soon. This morning we found a mouth sore in his mouth. It looks like it really hurts but he hasn't complained about it yet. Mouth sores are common with the drugs he had and the doctors told us that they would go away when his blood counts go up, but until then we just have to help him find things to eat that don't hurt him and give him medicine when he complains of pain.

 

 

The plan (and the next thing to wait for) is to go in for an MRI on the 20th and then the doctors and surgeons will look at it and figure out if we need more chemo or if we can schedule a surgery. We won't know what we are doing until the 21st when we meet with the doctors. I'm hoping that we can just do the surgery and be done with this whole thing. I would really like to not have to do chemo during the fall when everyone is getting colds and I would like to have Davin feeling better so that he can have fun trick or treating this year which he is really excited about. :)