I started this blog one year ago on the 4th of February. I never documented the first couple of days until yesterdays blog. Some friends of ours gave us a journal to write in during this experience and this is my first entry on the whole experience. Yesterdays blog was me trying to conjure up all the thoughts and emotions that happened one year ago but this post is raw. It was written when wounds were new and open. I apologize for any repeat information from yesterdays blog. Bear with this long entry.
FEBRUARY 4, 2010
Before I forget and before I backtrack to the last couple of days I want to share the feelings I had this morning and describe this day thus far. I woke up this morning around 6:45. Gavin was singing and I had this intense "burning in my bosom" it is utterly amazing to feel the prayers everyone has for us. They are tangible. Instead of beginning the day with expected anxiety I was filled with peace and love and a very strong "calm". Thayne (Nate's dad) came over around 8 am and gave Spence a very sweet and emotional priesthood blessing. He told him that he has a special purpose on this earth and that these experiences are going to help him with that purpose and that he will be able to help others because of these experiences. He blessed him with peace and with health. Any anxiety I previously had ceased. I cleaned bathrooms did laundry and packed bags for us all for the next couple of days. Cleaning the house was therapeutic. WE dropped Belle and Gavin off with Suzi and she had an awesome green shark rag quilt all made for him. She had to have done it with in the last few days. She is amazing. We checked in and are now sitting here in the pre-op waiting room to talk with Dr Grimmer, the ENT who will be doing the biopsy. So I will have more to write about later, about the biopsy. Now I will start from the beginning. Sat. Jan. 30th in the evening I noticed Spencer's eye. His right pupil was considerably smaller than the left and his right eye lid droopy. It made me really nervous but I didn't feel the urgency to take him in that night, which I am glad about, because it would have been a lot of unnecessary waiting over the weekend. He had a dr.'s appt set up already for Mon. for a headache check up. That day was crazy. It was an hour before we were even able to get in after our scheduled appt. She saw his eye and told us to go right ot Primary Children's ER for a CT scan. I dropped a ver hungry and tired Gavin and Belle off with Nate and took off with Spence. We stopped at Carls Jr. and got Bacon Western Cheeseburgers and onion rings. Once we got to the ER things moved pretty fast. Just a couple hours of meeting with nurses, doctors and doing a CT scan we were told my the ER doctor that he had a tumor. In all the years , 7.5 years of being a mom, I have envisioned and stopped breathing over a possible moment like this. I have said many times to others that if this exact scenario ever happened to me, I would become non functional. I suppose this moment is when the first miracle took place. I was functioning. I asked questions and gathered information on what we needed to do the following morning. When I called Nate he broke down, but I was still functioning. Spence needed to see me strong and not afraid. I let him sleep with us that night and just cuddled with my baby boy. the next day we called the ENT and had our first appointment with Dr. Grimmer. I felt really good about him. I liked his bedside manner. He determined by the CT scan of symptoms with his eye (Horner's Syndrome) that he had a malignant tumor called Rhabdomyosarcoma. It is rare cancer in Children around Spencer's age. Because the doctor in the ER had preliminarily made the same diagnosis we weren't in shock. We had about 3 hours before his MRI to kill so we went to the cafeteria to waste time. After texts and phone calls I became pretty emotional thinking of this horrible obstacle in front of my baby boy. I still felt peace, however, I don't know if this peace is an "everything will be okay" peace or just a gift from Heavenly Father . I feel that a lot of this peace I feel is from all of the prayers. When we went into his MRI I let my emotions overtake me. Running the scary scenarios of the months to come panicked me. The MRI would show the extent of the attachment of the tumor, and if it had spread. He got a Bakugan Trap for being so good during the MRI. He said it was horrible and he never wanted to do it again. Back tracking a little, the placement of his IV was my first breakdown. He was on my lap, straddling me as they placed it and he started to cry. He was so scared and all I could think about was the procedures that were to come for my little guy; how he would go to hell and back and I had to watch. Melissa had Gavin and Belle was spending the night at Melanie. When we were done we went to Melissa's to pick up Gavs. She has also been very emotional. Melissa made dinner and Cindy came over. Thayne stopped by in the morning before we had left for all of this. It was nice to spend the evening with family. Our ward, our absolutely wonderful ward had already assigned dinners to our family. When we got home Saunie and Jodi were waiting with dinner, cookies from Kneaders, and presents. I have such wonderful friends! Candace showed up with a signed card from the Young Women. When they all left there were two big bags on our doorstep from the Dumas'. Marti and Nic's little girl, Haley, had kidney cancera couple of years prior. they bought Spencer a rolling backpack and filled it with games, toys, snacks, a blanket, and money for the cafeteria. They gave us journals and inspirational books. We were overwhelmed by their love. Nate went to their house to thank them and had a nice moment with Nic. The next day Marti offered to do my hair. I was filled with peace the whole day. Dr. Grimmer called confirming that the MRI showed rhabdomyosarcoma but that it seemed localized. Good news for what it was. I felt great the whole day until I went to Target. I think being alone peaked my imaginative anxieties and I prayed in the car, I pleaded to the Lord to heal "our" son. When I got home Jason Zundel was there and I broke down again. It took me a moment to catch my breath but I have been fine until now. Candace and Brad came for a visit and after they left Spence and I had a little talk about what is to come. He most likely is going to go through major chemo and possibly radiation. Katie Reng brought dinner over and she and Saunie presented Spence with an awesome Utes blanket they made for him. Katie gave me a beautiful bag she had been knitting and my own knitting needles and yarn. My friends are incredible. Someone is praying for my sleep because the last couple of nights have been decent. So here we are now waiting for him to go into his biopsy. I will post later tonight. . Holly
6:52 pm about 5 hours later.
The biopsy took a little over two hours. Dr. Grimmer, who is so great, said everything went well. There was no damage to any cranial nerves! Yay! The cells seem bluish (not necessarily good) but he seemed hopeful to any outcome. He said Spence is his third patient to have Rhabdo and the other patients are well, healthy now.
It is amazing that we are getting close to the end of this journey. I am not going to jinx us by saying we are done but we now know that WE CAN DO HARD THINGS. I am excited that after today we only have four clinic chemos left and then maybe we can enjoy a 'normal' life again. We have spent so many hours in this unit. It is like home. I feel comfortable here. It is crazy that (cross your fingers) we never have to come back. We still have a 2 week period after this chemo that he could possibly get sick and neutropenic, but we are hoping for the best! This is the best way we could possibly ever celebrate our anniversary of this crappy diagnosis!