Changing of the tide

Yesterday while I was with Kyler at the radiation oncologist's office I heard two nurses talking about the logistical changes they will be having make in order to begin treating pediatric patients receiving radiation in the morning. The technicians will have to get there 5:30 AM in order to warm up the machines and be ready to treat at 6:30 AM. There will be some longer hours occasionally and the need to bring in a few people earlier in some cases, but it looks like they will begin treating their first patient July 10th under this new schedule. It is too little too late in our case, but I take a small degree of comfort in knowing that I paved the way for someone else. It was hard not to get angry knowing that someone else was going to reap what I sowed.

We received word this morning that we have been approved by the Make-a-Wish Foundation for a one-week trip to Disney World in Florida! We will stay at a resort called, “Give Kids the World”, a special place for kids with life-threatening conditions to stay with their families. We are so excited. Thanks for your prayers for this quick approval.

Please continue to pray for strength for Kyler as well as Sandie and I. The more we discover what chemotherapy is going to really look like, the less we like it. We are going to do our very best to use the month off between radiation and chemotherapy to help him gain weight, strength, energy, and boost his immune system. The doctors have told us that this last week of radiation could really wipe out Kyler. It’s kind of like it all has been building up and has a cumulative effect on his body.

We love you all. Thanks for loving us and praying for us.

Hot Weekend!

We’re in the home stretch of radiation. Our doctor reviewed the timeline with us and our last one is Thursday July 6th. We will be having an open house party that evening from 5:30 – 8:30 PM. We would love to have any of you stop by to celebrate this milestone with us. The street address is 325 Ragsdale Court in Lincoln. We will have snacks and drinks available.

We had a good weekend in Redding. It wasn’t hot enough in Lincoln, so we went to where it would be 116 degrees Fahrenheit! Really! It was that hot. We took my parents who are visiting from Tennessee and stayed with Sandie’s parents. Lots of family and friends came by Saturday evening to be with us. It was great to see everyone.

Sunday morning we spent at our sending church, Risen King, giving and receiving lots of hugs. Tim Loomis, the worship pastor for The Foundry, was leading worship that morning. That evening we celebrated the birthday of a dear friend.

For our Redding friends, there is a fund-raiser being put on by the Redding M.O.P.S. (Mothers of Pre-Schoolers) chapter. It’s a drive-through spaghetti dinner. You pick it up and take it home with you. Please don’t try to eat this and drive at the same time. You do so at your own risk. However, the food will definitely be worth it. I have had the privilege to eating what these women can make and you won’t want to miss out. It’s at Redding Christian Fellowship 2157 Victor Ave. on June 29th. It’s $5.00 per person. It will be open from 4:30 till 7:00 PM. Tickets are still available.

In Lincoln, the Lincoln Moms Group will be selling water bottles and juice boxes at the 4th of July bash in McBean Park to raise funds for Kyler. You can make a fan as well to keep you cool during the festivities.

Another mother in Lincoln is soliciting businesses to donate a day’s worth of profits or a percentage thereof to benefit Kyler.

We are so grateful for the people who have given their time and energy to organize these events for us. Our greatest thanks go out to you.

Also, in the upcoming Relay for Life here in Lincoln there are a few teams gathering with Kyler as their inspiration.

This will be significant for us as we continue to forge ahead with treatment and move into unknown territory. We don’t have any way of knowing what the next 11 months will hold but we do know who will be with us every step of the way and who will be our Provider.

Thanks again for being part of the process. We are grateful beyond measure.

The Right Place at the Right Time

It’s amazing to see how God orchestrates and uses circumstances in the lives of his children to shape them and make them more like Jesus.

As our family continues this journey, we see a bit more of what God is doing in each of our lives. We also see God’s wisdom in the movement of our lives to this point.

As we stand here we can see His fingerprints upon our lives and are grateful for his enduring faithfulness to us in the midst of this storm.

We have commented to one another that we feel as if we are in the best place to go through something like this. We are in the best place geographically, emotionally, spiritually, provisionally, and relationally.

Geographically, we are close to our hospitals, doctors, and other resources that would have been much more difficult for us to access from Redding.

Emotionally, we feel extremely supported and loved by others and feel free to express our emotions in healthy, honest way. This blog has been a significant part of that freedom.

Spiritually, we are covered, supported, and carried in prayer. By God’s grace we are continuing to press into the Father’s Heart and listen for that ‘still small voice’ of assurance and guidance.

Provisionally, we are blessed to have very good insurance right now since I have been working for FedEx. We only had it for three weeks before we found out about Kyler’s tumor. Friends, family, and local churches continue to bless us financially to make sure we are covered for everything insurance doesn’t catch. We still don’t fully know what will be heading our way, but we trust that God’s provision through his children will be ‘more than enough’.

Relationally, we have been immensely blessed to have a strong web of friends who give of themselves freely even when we have very little to offer in return. They serve, pray, give, and love without expectation. This astounding outpouring of love has been such an inspiration to us. We cannot adequately thank all who have and continue to literally ‘give up their life’ for us in small and large ways.

We met with the Make-a-Wish Foundation people tonight and it went well. They are working to try and make a trip to Disneyworld in Orlando for our family. There is a special resort just for children and their families with serious conditions. It felt weird to even be sitting with them since most people think Make-a-Wish only works with ‘terminally’ ill kids. It’s actually any child with a ‘life-threatening condition’.

Please continue to pray for Kyler during his last two weeks of radiation. He has lost a little bit more weight but he is in good spirits. We would love to see his energy levels and appetite continue to rise and that during his month break in between radiation and chemotherapy that his body would fully recover (appetite, weight, energy, etc.)

I got a response to my letter decrying the poor timing for treating pediatric radiation patients. The hospital chief operating officer has requested that the radiation facility and the head of pediatric anesthesiology meet to better coordinate efforts. Sadly, it will be too late for Kyler but it will benefit future pediatric patients receiving radiation. I will continue to follow-up with the progress.

We will be in Redding this weekend visiting family. We will be at Risen King Community Church for the second service. We’d love to say ‘hello’ and give you a hug if you’re in the area.

Blessings,

Darrell

Father's Day Weekend

We had a fun Father's Day weekend. My parents came out from Tennessee and my brother came up from Las Vegas with his wife and daughter to the South Lake Tahoe area. Arrangements had been made some time ago by my parents to have a condo there for a week. Since Kyler had to be back for treatments we were only able to stay the weekend. Still, it was good to be together.

I was sorely tempted to stay in Tahoe. The beauty of the lake and surrounding mountains peaked with snow was very therapeutic for my soul. Breathing clean air with a slight hint of vanilla from the Jeffrey Pines nearby was a joy. Being close to those who love us most and were willing to listen was very much needed for us right now.

As beautiful as the scenery was and the richness of the company, my ability to fully enjoy it was tempered by the weakened state of our son. He is continually tired and lethargic even after the blood transfusion. We can get him to eat little and he occasionally loses what he has eaten.

It's hard for me not to get angry when he won't eat as much as we think he should or vomits what little he has eaten. Sandie feels guilty. He is so small and doesn't know how to fight for himself. He repeats, "I'm just a little boy", when it gets too overwhelming for him. I'm so angry that he has to grow up too quickly in too many ways through this. I just want him to be able to be a little boy right now. I miss our smiling, energetic boy full of life and joy.

He doesn't understand that some things you just have to do because they are good for you and vitally important. You're not going to like everything and it's not all going to taste great and be your favorite. If I push too hard it backfires and we lose ground nutritionally. Yet I cannot eat for him or take his nutritional supplements for him. There is only so much we can do and then it seems we are helpless beyond that.

Yet we are not without options or hope. Knowing there are many of you praying fervently gives us strength. God loves to give wisdom to those who ask without doubting that he will actually follow through. We are asking daily.

We are contemplating some bold moves in regards to Kyler's care out of frustration with the current situation. There are risks involved. We would be swimming against the current of normal medical practices. However, since the cancer cure rates have not effectively changed in the past two decades, 'normal medical practices' have lost their glow of promise. They have only been able to reduce the number and severity of side effects with all their 'advances'. I am becoming increasingly jaded toward institutionalized medicine that treats symptoms and conditions and not root causes and the whole person.

Please pray for strength and courage for us right now. We need to hear from our God, "Be strong and of good courage."

In all of this we have determined, with much prayer and counsel, that it is too much for us to try and walk this road with Kyler and plant a church at the same time. We have chosen to lay down The Foundry. We have chosen the health of our marriage and family. We have chosen to pursue the Kingdom of God as a family unit above all and trust that everything else we need will be provided.

God's grace and peace to you.

A "Hairy" Weekend

This weekend brought one of the more 'in-your-face' realities of what's happening with Kyler. Almost all his hair fell out over the course of two days. He's fine with it. It makes him look like his uncle Scott. Sandie, on the other hand, was not so calm about it. It was very sad to see that happen. It actually made him look like a cancer patient. We aren't in denial about what is happening but sometimes it sinks in even further with different situations. Sometimes random things really hit home and we never know when that's going to happen so it takes us off guard.

We must thank you for your prayers for our courage and boldness in making the necessary moves to try and get the treatment time changed as well as say 'no' to the increased radiation dosage. The conversation with our radiation oncologist went very well. He necessarily expressed his concern but was willing to do as we requested. I was very nervous before hand. We feel very comfortable with our decision.

I also sent a letter to the hospital administrator, medical director, and other people expressing our dissatisfaction with the treatment time. I hope we will be able to apply adequate pressure to get things changed. We are not trying to be adversarial or belligerent but simply do what we think is best for our son.

More good news – Kyler has gone almost a whole week with going in for treatment with no whining or crying and is actually participating in the preparation for administering the ‘sleepy medicine’.

Tomorrow we will find out what his blood counts are. If they have continued to drop and his energy levels are low we will be looking at a blood transfusion. I’m not sure how I feel about that. It’s someone else’s blood in my son. His body didn’t make it. The tough thing is knowing it is his radiation treatments that are necessitating the possible transfusion.

Please continue to pray for good energy for Kyler and healthy blood counts, good appetite and minimized weight loss, no vomiting and ease in taking the nutritional supplements.
As you continue to pray for us, it is encouraging to hear from you. Thank you for your comments and sharing what God is speaking to you.

Blessings,

Darrell

Marching up a big hill

On Tuesday our radiation oncologist informed me that he had gotten a response from the head of pediatric oncology at St. Jude’s in Memphis and the chairman of the committee that designs the clinical trials for pediatric cancer patients. They felt that the radiation dose Kyler is currently receiving is too low. They are preparing to initiate a clinical trial in which patients with Kyler’s type of cancer and location of tumor would receive a higher radiation dose than Kyler is currently receiving. The following numbers may not mean a great deal but it gives you a reference for where things are changing.
Currently, Kyler is receiving a radiation dose of 2340 centigrade. In the new clinical trial that will be coming out patients would receive a dose of 3600 centigrade. Both of the doctors who have been in contact with our pediatric oncologist felt that, for a five year old patient, 3600 would be too high. They felt that a dose of 3060 would be appropriate.
This would increase neurocognitive damage resulting in greater difficulty in processing information, short-term memory loss, increased frustration in the classroom, and other learning disabilities. This would also have a greater impact on his teeth, which are in the radiation field, as well as other future growth hormone issues.

Two things have given us hope after receiving this discouraging news. 1) You are all praying fervently for Kyler and our family. 2) Kyler is taking many dietary supplements that will hopefully reduce the amount of damage done to good cells.

When we brought up the possibility of looking into getting radiation treatment at UC Davis while we were under care in the Sutter Health care system you would have thought we had suggested that we go to Venus for treatment. So why were we even asking about UC Davis? We contacted them to find out when they treat their pediatric cancer patients receiving radiation and discovered that it is early in the morning (around 7:00 AM or so). What a great idea!! That way even if they have to be receiving general anesthesia the eight hours they can’t eat is while they are asleep.

This seemed to shock them that we would even think of transferring Kyler during treatment. Well, we don’t know any better. That’s why we ask questions.
Apparently, moving a patient, even within the same health care system, to another radiation facility is a risky move. The analogy they used was that of making a cake. “You wouldn’t start making a cake and take it out of the oven half way through and run across the street to put it into a different oven, even if it was the same model of oven. It just wouldn’t turn out right. Each radiation machine is unique and has it’s own peculiarities. You can’t just throw him on a different machine. He would have to go through the entire set-up process again as well as interrupt treatment. It’s not a good idea.”

We repeatedly assured them that our only frustration is with the schedule of treatment and not the doctors themselves. The schedule is does not give pediatric patients the most opportunity to thrive during an already difficult treatment process.

The news of the possibility of our ‘defection’ spread quickly. By the time we arrived at the radiation oncology center only an hour later, they already knew what we were thinking and were making attempts to try and smooth things out.
Don’t get me wrong. Our doctors are great. They perform miracles every day. They have taken good care of us. However, they are forced to work within a structure that sometimes does not have the patient at the center of the decision making process. It would appear that a change that would benefit patients must also benefit the bottom line, or at the very least not hurt it in any way, in order to be instituted. If it is not cost effective or expedient it will likely fall to the wayside.

On Wednesday Sandie was praying as she was driving to the radiation oncology center that she would receive some sort of encouragement from the doctor. God answered her prayer in the form of receiving information on who to contact at the hospital to apply pressure in order to try and get things changed. I also spoke with two people that afternoon that had ideas on how to go about stirring things up in the right way to get a change in the system. We are hopeful that our efforts will be successful in instituting a policy that will be of greater benefit to the pediatric cancer patient - even if it’s not for our son, but for another’s child.

Kyler’s appetite is not great. After only a few bites he is full. It’s no wonder since his stomach has shrunk from not eating all day. It’s funny. He loves to make things in the kitchen even though he knows he can’t eat them. “Oooo, Kendrick would like this one”, he says admiring the picture in the kids cookbook. He is then content to mix and pour in ingredients to make something he can’t even enjoy.

Over the last few weeks his blood counts have started to dip down. If the trend continues he may need a blood transfusion within a week or so.

Thanks for continuing to pray for us.

Decisions, decisions...

Our frustration is growing with the situation. We feel the way things are set up for radiation treatments are not in the best interest of the child patient.

Here's what seems to be happening. Kyler is woken up at 5:30 AM for his last opportunity to eat before the day gets going. He is typically not interested in food at that hour (who is, really?!?). Then starting at 6:00 AM he cannot have any food until after the treatment.

After radiation is done he says he is hungry but he needs to have some clear liquids before we start shoving steak and potatoes into his body. This is to minimize any throwing up right away. On the way home he gets a small snack and gets 'full' quickly. His sense of full has changed since his stomach has gotten smaller due to the forced fasting during the day. We have to strongly encourage him to eat. He says he is full or that he might throw up.

If things continue in this manner I imagine we will be told he has to get a feeding tube put in. This has caused us to seriously consider finding a facility whose treatment structure would be more conducive to allowing Kyler to sleep and eat in a more natural pattern (i.e. eight hours of not eating taking place while you sleep and receive treatment in the morning to allow for more opportunities to eat during the day).

I understand that pediatric anesthesiology is a very specialized field and there are only so many doctors to go around. However, it seems that the reluctance to restructure things to allow for treatment in the morning has more to do with finances that it does with what is best for the patient. It is easier to pay a surgeon one time to install a feeding tube than it is to pay for an additional pediatric anesthesiologist to come in early on a daily basis for six weeks.

Please pray that we will have wisdom on how to move forward and that we might discover what options are available.

On a positive note, Kyler has become, what we call at the Haskins house, a ‘pill pro’. He seems to have mastered the skill of swallowing pills. This is a big step for us because it makes so many of the things he needs easier to take. He is also getting better at learning how to calm himself down so he doesn’t get himself worked up to the point of gagging and throwing up. He is learning how to keep his cool and keep trying.

Please continue to pray that Kyler would be spared the typical side effects of radiation.

P.S. Kyler has the most expensive mouthwash I’ve ever seen. $45 for a bottle of some special stuff the pharmacy has to whip up in the back that is supposed to prevent some fungi or bacteria from growing in his mouth.