It's been a long road, so this story is long as well...
Joseph's journey started a little over a year ago in December of 2015. A few days before my first surgery he got very sick. I took him to urgent care and they said he was exhibiting all the signs of appendicitis. They had him drinking lots of water and by the time to surgeon arrived, he had thrown up and was feeling much better. I took him home and he seemed to improve a little. My surgeries came and went and I started my cancer treatments. He was still very tired, often asleep within an hour of coming home from school. He got occasional fevers for no reason and had trouble eating and processing food. He lost more than 10% of his body weight. He tried to play down his symptoms, I think because I was struggling with treatment and he didn't want me worrying about him. This still breaks my heart, because my most important job is to worry about and care for my children!
A month later I took him in and asked them to please help us figure out what was wrong. I asked for food allergy tests. This was all very traumatic for Joseph who was terrified of needles. But he was so brave each time. I got a call the day before my second chemo appointment and was told he had a gluten sensitivity. We cut out all gluten, which is not an easy thing to do. But it was all I could do. He would tell me it was helping, but after months I noticed the diet was not helping. I wondered how he was getting gluten in his diet to make him so sick. We were being so careful!
We went in to see the doctor once again and were referred down to Primary Children's Hospital in Salt Lake City. His first appointment was on October 31st. Heartbreak! We would not only be gone for Halloween, but Joseph's class was having a field trip that day. I told him to bring his costume and if he felt up to it, we would find a neighborhood to go trick or treating at. Annalina came along to show her support for her little brother whom she ADORES! It was fun to have her along and she is an amazing navigator, so I didn't have to worry about getting lost.
We met his wonderful new Gastroenterologist. She was very pregnant and very good with Joseph. She was concerned about Celiac, Crohn's Disease and Ulcerative Colitis. We did more bloodwork while there and the doctor told him he needed to eat gluten for the next month so she could see any damage being done in his colon. He was thrilled and we got him a burger and fries for dinner. We got back to the hotel and he was exhausted after the long drive and all the waiting at the clinic. He did not have the energy to go out for Halloween. We watched a couple of Halloween movies and went to bed.
We went back to Salt Lake in early December for an endoscopy and colonoscopy. We got in the night before and stayed in the same hotel. Joseph had a miserable night getting prepped for the colonoscopy. He had not eaten for a day and had to drink Gatorade with laxatives. He was miserable. We cheered him on each time he finished another dose and he cried a few times. But he did what he needed to do. It was so hard to watch and at times he would just come snuggle with me. At times I found myself feeling angry at having to do this alone. But as it always has been and always will be, loving my children through their most difficult times is a privilege, and one I do not take lightly. I would do anything for any one of my children!
Joseph was fairly nervous about getting the IV. We left plenty early and got to the clinic we had been to for his first appointment only to find out we needed to be at the Children's Hospital in downtown Salt Lake. I panicked a bit, ok a lot, I hate driving in big cities and I had been struggling with severe anxiety for a while! But Annalina was right beside me, helping me look for exit signs and street names and just keeping us on track. We were only about a half hour late. Joseph was the second procedure of the day so it all went fairly quickly. It turned out that they put him to sleep with a mask before putting the IV in, so he was very relieved about that.
After the procedure the doctor explained that she had ruled out Celiac. She showed me lots of pictures of Joseph's insides and said she would have to wait on the biopsy results to know for sure which of the other two diseases he had. She also explained that during the biopsy his colon was very unhappy and it had bled more than she liked to see. So they checked him in for observation and we were unable to head home that night. He was very cute when we first saw him after his procedure, or as we like to say he was loopy. He was grateful they had "slurpees" and crackers for him to eat. We got to his room and I have to say, Primary Children's Hospital is amazing. They took good care of Joseph. There was plenty of in room entertainment as well as a binder full of DVD movies to choose from. When he started to feel hungry I just dialed room service and they brought him whatever he wanted. His first choice?? Top Ramen! Later he ordered a chocolate shake with m&ms and marshmallows.
I was really nervous about the drive home that next day. There was a storm coming through the I-15 corridor and that had me very worried. I am a pretty good snow driver, but my anxiety had me doubting my abilities. But we had no choice but to stay the night. Joseph's bloodwork came back fairly good so we got the go ahead to leave. My heart was full of prayers that this big storm would not strand us, or that it would hold off until we got through. My prayers were heard. The ONLY snow that fell was a light snow that came at the summit of our drive. The freeway was clear the entire rest of the way. What a blessing for my anxious mind and heart!
The doctor called the following week to let me know that Joseph finally had his diagnosis, Crohn's disease. This is an autoimmune disease that he will deal with for the rest of his life. She recommended a drug called remicade, which is given intravenously. There is a high risk of rejection with this medication, so once a week Joseph would have to take 7 pills to counteract that. And that medication has side effects so once a day he would need to take another pill. Very overwhelming! I was dreading telling Joseph about the IV part. But he was brave and said if it would help him feel better he would do it.
On December 21st I took Joseph down to the hospital in Idaho Falls for his first treatment. He was nervous. Occasionally I would see his eyes fill with tears, but he was so very brave. They told him they first needed to draw blood and the tears almost overflowed. He didn't want to be stuck twice. The nurse we got was great and they got the blood they needed from the IV, so only one poke. It took several hours and Joseph was sleepy from the Benedryl they gave him, but he did wonderfully. I am so proud of him!
Yesterday I took him down for his second infusion. He says its getting easier each time! He is already feeling better, though still very tired. I got a call from his nurse at the Children's Hospital. She told me he has persistent anemia, so we get to add a couple doses a day of iron. His doctor in Utah had her baby, so we have been temporarily reassigned to a new doctor for a while. We will be going to see him in three weeks.
It has been such a long journey for us and the journey will continue. It is so hard to watch your child suffer and struggle. Joseph has had more than his fair share of trials in his short little 11 year life. But he is facing it all with grace and understanding. I am constantly amazed by his strong spirit. He is such a great example to me. It is also an amazing thing to watch him eat. He is often hungry and he can eat a whole plateful at dinner now!
I have had to take a lot of time off from work, but I am blessed that my supervising teacher is so understanding of this. I had been applying for other jobs with no luck and I know that in time I will need to find a better paying job so that I can better support us, but I can't help but think this is all part of the plan. When the time is right, my career will go where it needs to, but for now I am where I need to be. I feel so very blessed. I know that we are being watched out for.
That We Might Have Joy: Jennifer's Story
1 week ago