Jake still hasn't had his last chemo. We are waiting for is platelet counts to be above 65. A little frustrating, I'll admit, but my feeling is that it's better to wait for Jake's body to be ready for this last poison to be put into his body, so he can start the recovery process.
Today, he is running a fever again. Tomorrow he will have his blood drawn to see if he will be receiving chemo on Tuesday or not. We pray that he can finish this so we can get on to the next phase of his treatment...healing!
I was told that I'm holding my feelings in and that I should write them down or share them so they don't get stuck inside and lost...so I have decided to share this journey that we are taking...and perhaps some of you out in the blogging world are going through some of the same stuff...in some way or another, whether it's cancer or some other life challenge.
My hope is that you will come to understand that God knows who you are, He is mindful of your needs, He knows the outcome of all challenges and it is best to put your trust in Him, because He loves you so much!
Cancer Journey with Jake
June 15, 2010, was the day that changed the course of our lives. Jake had had some swelling that was making it very uncomfortable for him to walk. Being 19, I sent him to the doctor a few weeks prior, by himself. He was put on antibiotics for the swelling, but that didn’t change anything. I accompanied Jake when they sent him up to the Urology Department, the first time. They just put him on the same antibiotics. Subsequently, they took a CT scan to see why the swelling wasn’t going down.
The morning started out like every Tuesday morning starts. I made sure the two youngest got off to school, and then I was on my way to play racquetball with whoever showed up that day. Apparently, Jake received a call from the doctor’s office telling him to come in as soon as possible and to bring his mother. Jake called me while I was still driving to the gym and relayed the message. I asked him if he wanted me to turn around right then and go with him to the hospital, but he wanted to eat breakfast and spend some time getting ready…so he told me to play my games and then come home.
You know, when the doctor tells you to come right away and bring your mom, it can’t be good news! I lasted one game, and then I knew I had to get home right away. My head definitely was not in the game. I started crying (which greatly confused my racquetball partner! Sorry Leon!) and I quickly left to be with Jake. I distinctly remember driving up that long hill on 100 West in American Fork and the word “Cancer” popped in my head. Then the thought, This is Jake’s “Alma the Younger” experience. It will be hard, but you will like the outcome!
I changed clothes, Jake was ready to go. I called Dave because I didn’t really want this experience without him by my side. OK, I didn’t want this experience, but I didn’t have any control over that part.
We arrived and played the doctor’s office waiting game. We were all a little nervous. I didn’t share what word popped into my head earlier. I think it was just for me…to prepare my heart. The Urologist comes in and I believe that if they offer classes on tactful ways to give bad news to patients and their parents, he must have skipped out of that class. He just said, “I’m really sorry, but your son has cancer.” Then he proceeded to show us why he thought this was true. We looked at the CT scan and all the bubbles that were his lymph nodes, swollen up. Then he showed us a tumor that was near his bladder. He went ahead and took a scope view to make sure it wasn’t inside the bladder, which it wasn’t.
So now the question was what kind of cancer was it and had it spread to other places in his body? Did they catch it in time? How fast was it spreading? What were the other symptoms? Was it treatable? What would the treatment be and how good of outcome could we expect? How would this affect Jake…short term and long term?
I was holding on to hope that since this doctor was not a Oncologist or Hematologist, he didn’t know everything about cancer and he was just guessing…right? He referred us to a lovely woman Hem/Onc docs (Heather) whom we have still, to this day, have never met. She was our second tender mercy. We first had to get a biopsy done of one of the lymph nodes to start doing “stains” that would determine the type of cancer we were dealing with. That doctor said he didn’t schedule procedures on that day, but he made arrangements for the radiologist to take a ultrasound biopsy that day (so we wouldn’t have to wait) and the guy who does the tests was right there in Radiology waiting for the specimens and let them know if the samples were big enough.
Heather Gilbert, M.D. was our Angel in Passing. She kept us posted on the “stain” results, which was mostly…”We don’t know yet!” They would take more slices and do more stains. Her first test result call was, “He doesn’t have lymphoma, so I won’t be your doctor. But I’ll stay with you until we know what it is and get you referred to the best doctor I know!” She was definitely in the “Tact” class! She would keep calling me or having me call her or her assistant Erin, to get the results, even if it was after her work hours. She would keep calling the Pathologists for results and let me know as soon as she knew something. Somehow, I wasn’t upset or distraught when it took longer, because I chose not to worry about what I didn’t know. She was amazed at my attitude! She remarked, “I can’t believe your patience and understanding! I have a son about Jake’s age and I don’t know if I could have the same attitude.” I asked, “If I were impatient or upset, would that make the outcome any faster or different?” “No.”, she replied. “Well, I choose not to worry about what I don’t know. I know that you are doing everything you can to get the results to me as quickly as possible, and that is all that I can ask!” “I wish more parents understood it the way you do!” she said. At the end of our encounter I was calling her Heather, instead of Dr. Gilbert. I told her she was more like a friend than our doctor.
One of her last phone visits with me, she told me that slice after slice of biopsy material, test after test, stain after stain, they were on the last piece of lymph node. They stained it for Rhabdomyosarcoma and it came back positive. She related that they had to get another piece of lymph node to confirm absolutely that there was no question that was the cancer infecting Jake’s body. At this point I was brave enough to ask the question I dared not ask. “Is there no hope that Jake does not have cancer?” “No.” She replied, “There is no hope.” She had to wait until I could gain my composure enough to speak audible words. I could feel her desire to put her arm through the airwaves and around my shoulders for support of this devastating news…and that was understanding enough…for me.
I retired to my room and wept uncontrollably on my bed…just for a minute or two, until I felt angel arms of comfort envelop me and the Holy Spirit gently reminded me that He had told me it would be hard, but I would like the outcome. He told me that my job was to help Jake through this. I wiped my eyes, got off my bed, gird up my loins and went out to face whatever this Rhabdomyosarcoma was.
At some point, early in the cancer treating regimen, Jake asked Dave to give him a blessing. I was hanging on every word he said, waiting for those words of comfort, that everything would be ok. He tried three times to say the words…but he couldn’t. I had my answer, but I wanted more validation! I wanted to know that this would be a breeze, the treatment would go fine, no setbacks, no ups and downs, no test…of faith. Well…it’s good to have goals! Right?
The mommy part of me wanted to take the cancer away from Jake. I wanted to take the hurt, the pain, the sickness and discomfort away and make it all better. Yet…this was Jake’s experience, Jake’s growth time, Jake’s time to realize that he can do hard things and that he was meant for more than video games and meaningless entertainment. We never looked at rhabdo as a punishment or a mistake, but an opportunity to grow and learn what we are really made of and who we really are. I can't lie...none of this was any fun! Some parts were easier than others. Some parts were easier for Jake and some parts were easier for me...then there were the days that neither one of us wanted to go on with it.
Something I didn’t expect was how heartbreaking it would be to see and relate to the other children and families in the hospital who were experiencing their own trials with illness. Rhabdo. is a childhood cancer, so Jake was treated at Primary Children’s Hospital for chemo and the Huntsman Cancer Center for radiation therapy. My heart couldn’t bear to listen to very much of the sorrow and heart ache they had to deal with. I don’t know why. Perhaps because it was just too close to home for me. I was grateful that Jake was not as bad off as some of the stories I heard, but I found it hard to not let my heart get sucked into to sadness. I must learn to have compassion without putting my heart through the sadness wringer. I don’t know how to do that yet.