David Helm's Journal
Written May 25, 2013 9:26pm
They say that no news is good news, and that is true of us. Since my last post we have had a great time. The highlight of it all was David's Make-a-Wish trip to Disney World. The only thing that could have made it better was if it was longer. It was the most wonderful time ever. We left a snow storm that was dumping 18 inches in Springfield, drove to St. Louis during the storm, played all evening at a hotel, then got up at 4AM to catch a flight to Orlando. I've never seen six kids be so willing to wake up at 4am. We didn't get the typical limo ride since the roads were so bad. The driver had to trade his limo in for a shuttle bus. Our flight left as scheduled, miraculously, and we got into sunny Orlando.
I cannot even begin to explain how amazing the week was. I would have to write a book. So, I will just mention some bullet points. Give Kids the World, the village we stayed at, is a fantastic place. The mission there is solely to take care of Wish kids. Everyone is treated like a prince or princess, waited on hand and foot by volunteers, and spoiled rotten. There's enough fun there to stay all week long. However, we managed to do the Magic Kingdom, LEGOLAND, Sea World, both Universal parks, and the Magic Kingdom again, in addition to hitting some highlight events and activities at Give Kids the World. David got presents in our villa every morning. We ate great food in the most magical setting. We swam, played mini-golf, met lots of characters, went to a Halloween party, a Christmas party, and a pool party. We even spent $40 on those spinning light toys at Disney (something I would not normally do). We were worn out every single night, but it sure was fun. What a blessing to have this trip after such a long, hard road of treatment. And what a blessing to have David feeling so well. We are so grateful to Make-a-Wish, Give Kids the World, and all the fabulous volunteers that make it all happen. I hope someday that we can be on the giving end of all of this.
After our trip, April arrived, and April is our birthday month. Four kids age up including the twins. Jonathan and David celebrated their sixth birthdays. Birthdays are blessings and even though we celebrate four in four days, it's like a tornado that dissipates into a rainbow. Everyone loves rainbows.
Our every-four-weeks of treatments have been moving along smoothly. David did get sick in March and we had to postpone his spinal a week, but everything else has been great. No fevers, no hospital stays, no problems. YAY!!! This past week David had a few days of stomach problems which culminated in a mad dash to the toilet. I think it reminded him of his first several months of treatment. He vomited about 30 seconds after getting his night time meds, but it was nice to just have him sleep in our bed, check him a few times in the night, and call the Dr. in the morning. Lest you think I am completely cool with everything, I must admit that even something minor like this leaves me a little more worried than I would have ever been before David's diagnosis. I have a little bit of neurosis but it just reminds me to trust the One who is in control, the One who loves us with the love I spoke of in my last post, the One who knows every hair on David's head, every tear I've cried, and every worried thought I think.
Our pool is now open (although the weather is not cooperating with our great desire to swim and soak up sun). School is over for the two big kids (Daniel and Sarah). Summer schedules start next week. We are blessed. Thanks for blessing us with your continued prayers. May we continue on this road of "no news is good news."
Two Years Later
Written Feb 24, 2013 10:00pm
Two years into treatment. Ten months into maintenance. Seventeen months of treatment left. We are over half way through David's treatment plan. I can remember vividly talking with the more seasoned moms at the clinic in those first weeks of treatment. They all said that it would get easier. I would give them my best smile and try to act like I believed them. I did believe them. They had walked my path almost exactly, so I had every reason to believe them. Still, I felt like that easier path was so far off. Now, I can rejoice in how the time has seemed to fly by. Two full years of this. Wow! People don't even know David is a cancer patient. I get many more asking if Jonathan and David are twins. Some people have started having a little trouble telling them apart. These are all things I have longed for. Thank you, Lord.
I was reading a caring bridge post of someone I have followed but don't even know. This particular mom wrote that she has decided in all of this that God has no control over it. No one can understand how a loving God can allow a child to suffer with a disease like cancer. I get that. But she has the wrong perspective. We are all tainted by sin. This world is stained by sin in a big way. That's not God's fault. So often we want to blame God for these things, but they should remind us of how loving God is because He has given us a way out. He's given us freedom from the shackles of sin. He's given us Life, eternal life, the chance to be with Him forever when this vapor of a life is over. Cancer is ugly to us. Sin is ugly to God. As much as I want my child to be free from cancer, God wants us all free from the death that comes from sin. (Romans 6:23) I will beg, and pleed, and pray, and work to find a cure for my child's cancer. Jesus has already bled, and died, and sacrificed to give me a cure for sin. Do you think I love my son?... Kind of a dumb question. Do you think God loves us even when cancer strikes?.... Kind of a dumb question. I've asked a lot of dumb questions on this journey. I thank God that His mercies are new every morning, great is His faithfulnees to me. He can weather any of our dumb questions. For me, He has proved Himself faithful over and over again. His faithfulness doesn't always mean physical healing. We rejoice that He has granted that to David. But often times His faithfulness comes in finding joy and peace in who God is and not in what He allows my circumstances to be or not be. AFter two years on this particular journey I feel as if I'm just scratching the surface of what God is trying to teach me. I pray He finds me faithful.
Thank you again for walking this journey with us and for praying for David. He is doing so well. He's getting regular haircuts, growing out of his clothes, learning so much, and having fun just being a little boy. In exactly one month we will be on our way to the Magic Kingdom for his Make-a-Wish trip. We are all so excited! Please pray for continued good health for the entire family, but especially for David.
Written Dec 21, 2012 9:54am
Wow! We are eight months into maintenance and David is sailing along smoothly. He just had his fourth spinal of maintenance and his last one of the year. Yay! His nurse at day hospital said he had a rock star performance. He had the hair to go with it that day also. His counts have been steady for the last eight months. Only his ANC has changed. That is what they use to measure how much oral chemo he gets every day. He’s had to stop it completely a couple of times, but this month saw an increase in the amount he takes since his ANC was the highest it’s been so far during maintenance. He’s had no trouble with his hemoglobin or platelets. It’s hard to believe he’s gone so long with no transfusions. We would be glad to never have another transfusion.
David is acclimating to being a kindergartener. He likes math the best, but he’s doing well at his reading lessons also. He still goes to speech with Jonathan twice a week. He struggles more than Jonathan to get some of the sounds down. They both make the same mistakes and struggle with the same sounds, but Jonathan is able to correct it easier than David. They struggle with saying the “t” at the beginning of a word like two or turn. They also have a hard time with the “f” sound and vowel blends. I think it’s just going to take a lot of practice. David would prefer to always play basketball or football or watch it on TV. What five year old watches UCLA play football and commentates the whole time. “Mom, it’s first and goal. Mom, that was a touchdown. The blue team is winning. Nice catch. Holding.” I think if he knew what it was he would say that when he grows up he wants to be an ESPN analyst. Pretty soon he’ll be telling his big brother, Daniel, what to do on the field.
As 2012 comes to a close we are reminded of all we have to be thankful for. This year has been so full of blessings for us. To see David’s condition improve is so wonderful. Watching him run and play, smile, and laugh so much is like music to our ears. Even the 5 days of every four weeks on steroids doesn’t seem like that big of a deal anymore. We’ve coined the phrase “extra grace” during those 5 days. There are times when all of us need a little extra grace. I have followed several stories on Caring Bridge and Facebook since David was diagnosed, and some of those stories have not had happy endings. But it’s not just pediatric cancer that can be depressing. What happened in Connecticut to so many children is just a reflection of this lost and dying world. We try to make this world as safe and as comfortable for our kids as we can. The truth is that this is not our home. This time of year we reflect on the greatest gift we’ve been given in this life, Jesus. And because of Jesus, we can live this life, no matter how long or short it is, with hope and joy, knowing heaven is our home. May Jesus fill your holidays and your life with His light which brings peace, joy, and hope. Have a very Merry Christmas and a blessed 2013.