Paulsen Family Update 11/29/13:: So Many Things to be Thankful for This Thanksgiving
Hello Family and Friends:
We have so many things to be thankful for this Thanksgiving and on the top of our list is all of our Loved Ones: Family and Friends alike. These have been some trying times at the Paulsen house and it would have been a lot more difficult to get through without all of the kindness and generosity we have received. Our first thanks goes out to you all. Our deepest gratitude and love to you and yours. Best wishes in the future and through this Holiday Season.
I apologize for the delay in sending out this update. Frankly, the energy to put into words what has been happening hasn’t really been there for me and there has been a lot that has happened since the summer.
I will start off by letting you know that his eye amputation recovery has gone very well. This includes the site where the skin graft was taken on his leg as well as the site in his eye. Within three days of being home he was up and walking around. I have no idea how Bode was able to do this. To put the leg graft in to perspective: imagine the entire outside of your upper leg down to a few inches above your knee having major road rash. That is what he had. The doctors tell us it is 100% healed and as long as he keeps it out of the sun, there should only be a slight difference in color relative to the surrounding skin.
The eye graft that was placed inside the eye socket has taken longer to heal. Each dose of chemotherapy causes the skin to regress in the healing process. Dr. Korn, our eye specialist who did the surgery, thinks this is very normal. He is happy with how well the skin graft covered the eye area. We are going to wait until Bode is completely done with chemotherapy and the eye can heal completely before we begin fitting him with a prosthetic. Additionally, Bode still has feeling in the back of the eye where the optical nerve is located. This gives us hope that if a robotic eye were to be developed he might be able to have some use of the eye. Todd has recently submitted a grant proposal to start working with Dr. Korn on exactly this kind of device. We are all extremely hopeful that the funding will be given so the research can begin, but realistic in understanding the long and arduous process this will be before a real solution will be reached. The possibility is extremely exciting nevertheless.
Bode is feeling mostly confident about the eye. He occasionally makes a comment about missing his eye, but for the most part doesn’t seem to think much about it. We have had to make some adjustments for his right side peripheral vision like moving the water from the right side to the left as we have had several glasses knocked over at mealtime (sorry Miss Manners), and sword fighting has specific rules related to the right-side. He does love to try and shock people by suddenly lifting up his eye patch to garner a reaction so consider yourself forewarned! He is happy to show people his eye socket when asked and will freely talk about what has happened to him. All of this is good and helping him to normalize the experience.
The first week of October Bode stayed overnight in the hospital for 5 nights. His red blood cell counts were falling into the low range. This had never happened to him before and I did not know what to expect. The doctors were watching his levels and they had not fallen to lowest level allowable, but they were darn close. He started his chemotherapy treatment anyway. As we got to the third day, Bode was extremely lethargic, pale, and non-responsive. We decided to do a blood transfusion. This was extremely uncertain territory. The idea of having someone else’s blood in my child’s body was foreign and frightening. I could see that something needed to be done, but this was really scary. We gave the OK.
Thankfully, Bode was able to receive the blood like an IV through his porta catheter. Right away I saw an improvement. The results were astonishing. As I continued to talk to the nurse practitioner about the blood I felt more and more reassured. The blood donated to the children’s hospital came from fire fighters and NAVY SEALs. Hero blood for my hero. Perfect. Bode was feeling a little sketched out by the blood and I was trying to figure out other ways to reassure him (and myself) that is was OK. Next I realized that the blood, which is kind of a dark purple color, looks like black elixir from the video game we play as a family called Clash of Clans. I reminded him of the black elixir from the game and how it powers secret troops who are uber-powerful. That convinced him and he did not ask about it after that. Again, perfect. As each minute of the transfusion passed, Bode came back little by little. The first thing that really showed me he was feeling better was when he asked for steak. We got a little steak delivered from Outback Steakhouse and the thing was gone in minutes. Then he wanted more. Every day since then he has been on a red meat bender as long as he is feeling well enough to eat.
I will not hesitate the next time he comes even close to needing blood. The result was almost immediate and there really was not any reason to wait. There are so many safe guards in place to make sure the blood is clean and from a good source that I feel very comfortable making that choice, but boy was the first time tough.
At the end of October Bode had several scans and tests completed. They included a MRI, full body bone scan, CT scan of the body, ultra-sound of the heart, and many blood tests, and a urine test. It was quite extensive. Thankfully, everything came back either clear or within normal ranges. This is extremely heartening news. If there was any evidence of disease at this time Bode’s situation would be dire. Additionally, the tissue sample we sent to the lab in Oregon that is doing research on Rhabdomyosarcoma was not able to get the sample to grow. This is also good news because it shows that new cancer cells were not able to be grown from the tissue that was in the eye area. We have removed all of that tissue with the amputation, but this is an added level of reassurance at this time. The same lab has just received a grant to conduct research on finding an antigen for rhabdomyosarcoma. Part of the need is living tissue with cancer cells. We are going to assist in creating a tissue bank to support this important work. This link gives more details about the project:
We are also very thankful to have Bode home for Thanksgiving. He underwent chemotherapy for five days last week in the clinic and then one day this past Monday. After Bode finished chemo, we decided to take the family up to Disneyland for Tuesday and Wednesday. All of the boys (including the Dad-boy) LOVE the Land of the Mouse. Samuel has been to Disneyland before, but doesn’t have any lasting memories of those visits. Boy was there a change. He is creeping up on his 3rd birthday and is extremely interactive. Couldn’t wait to get up to see his friends Mickey and Minnie. Here is a link to a little video he made before we went:
We are big travelers and our trip to Disneyland was one of our first big adventures while Bode was on treatment. We weren’t sure if we would be able to make it to Anaheim. Bode has been having a lot of carsickness related to only having one eye as well as the chemotherapy making his stomach extremely sensitive. The current medicine that helps with the nausea is called Zofran. Before we left he took some Zofran and was able to make the drive. Another effect of Bode’s treatment is impulsivity. Whatever he is feeling it is extreme. He was so happy we were going, but the car ride seemed unending (only an hour and half for us). Once we made it, food was at the top of the list. We had some great pizza in Downtown Disney immediately. Then we headed into the park. The boys got a quick burst of snow on Main Street and Bode and Samuel were ready to go to sleep. This may not seem like much was accomplished, but for us this was huge! I took them back to the hotel and they both crashed. Kellen and his dad were able to enjoy some one on one time late into the night. They scouted out a great spot for fireworks over by Autopia and took in a bunch of rides. Surprisingly, the park wasn’t very crowded.
On Wednesday, we headed in again and were able to get on Autopia. After that a quick trip to Tom Sawyer’s Island gave the boys some exploration time (Boy those caves are TINY). Samuel could have stayed out there all day. Around 2:30, Bode was starting to slide into the irrational zone and his feet were hurting (a side-effect of the chemotherapy Vincritine called neuropathy), so we headed back to the hotel while Kellen and Todd continued to explore the park. In an unprecedented move, Bode took a nap without any shenanigans. Mom got one in as well (another item of thanks for sure). After a good rest we headed back into the park and procured the ever popular corn dogs and watched the special holiday lighting of Sleeping Beauty’s Castle (more snow!). It was now time to visit Mickey in his house (only 5 minute wait if you can believe it). Samuel was taken out of the stroller as his eyes started to fall to half-mast. We were on a mission and that mission was to see Mickey Mouse! After seeing an unexpected lighting of Small World (definitely stepped up their game), we made it into Toon-Town. Straight into Mickey’s house and Samuel was on Cloud 9. He loved everything and could have spent hours playing with all of the gadgets. Finally, made it to the special room with Mickey, and Samuel was able to give his friend a big hug and high-5. Lots of kisses were blown as we headed out the door. The older boys enjoyed Star Tours, Autopia at night, and the Believe fireworks show. Good memories were made for everyone and that is the name of the game!
We have completed 6 months of Bode’s treatment. We have 6 more to go. This is sort of like when I drive to Montana. I cover up the odometer until I get to Utah, otherwise I am overwhelmed by the 1200 mile trip. Two months ago it seemed like we still had forever to go, but now I can see the light at the end of the tunnel and it is April 2014. Overall, Bode is handling the treatment really well. His spirits are high and he has faced some of his biggest fears related to the treatment. The first major accomplishment was the blood draw from his arm. It seems he decided he was going to be OK with it. Even during the time that his blood counts were low and the nurse was having a very difficult time finding a vein, Bode calmly asked how much longer it was going to take. No screaming. No need to be restrained. He simply helped himself by staying calm. This was a huge first step for him.
Another area where he has made significant improvement is with the removal of the port access. This is the needle that is inserted into another medical device that was surgically implanted under his skin. Think of the Iron Man port except off to the side. Every time he needs to have chemotherapy that device has to be “accessed” or have a needle with a surgical tube attached to it inserted into him. He. Hates. This. We go back and forth with some times he is reasonable and other times completely out of his rational brain. He is working very hard to take control of this with his Talking Doctor’s as well as with me and his nurses. The part he is doing well with is the removal of the needle. This part used to be as bad as the access, but the last time we were inpatient for six days he decided he liked being at home better than being in the hospital. He showed his dad how to take off the protective sticker and said, “Let’s get out of here!” The nurse took out the needle and we were done. The power of his mind is absolutely amazing.
Looking ahead at the next six months we have some real challenges as far as treatments. During the months of December and January there are four more weeks containing hospital overnight stays of either a one night stay or a five night stay. One of these takes us to Christmas Eve. We are moving the treatment up by one day so we are home on Christmas Eve and not on Christmas Day. This is one of the treatments that makes Bode really sick for a few days. Hopefully, being home for Christmas will help to take his mind off of the sickness. In February and March we have one week in each month of treatment in the clinic for five days straight. During these periods we do get to come home at night.
In February we also will have another MRI. For every test the outcome we want is “No Evidence of Disease”. As long as we stay on schedule, treatment will be over in April. After the final scans and tests we can schedule to have Bode’s port taken out.
I realize this is a lot. It is. I wanted to try and get as much information out as I could. For those of you who have asked how can you help, there are several ways that are all much appreciated. First, I am going to list the link below for the Meal Train site. All of the meals that have been given have been so wonderful and very much appreciated. Second, the link to donate money to BodeStash is listed below. For everyone who has donated to the Bode Stash, we are deeply touched and grateful. This is how we have been able to do special things with Bode and the boys like go to Disneyland and keep him occupied with videos! Third, Bode is going to take part in the Make A Wish/Macy’s Believe letter for the holidays campaign. If you or anyone you know would like to write a letter or send an email to firstname.lastname@example.org, Macy’s will donate $1 to Make A Wish. The letter can be a Dear Santa letter or what you wish for the holidays. Last year Bode and Kellen collected over 6500 letters and their submission was matched. To mail the letters please send to:
4203 Genesee Ave.
Suite 103 Box 296
San Diego, CA
Lastly, please stay in touch. We love to hear from you. Cancer treatment is like going into a cave. We really appreciate any ray of light.
Sending love, good memories, and best wishes to you and yours for the Holiday Season and the future,