Short Week

The Haskins family had a fun Memorial Day weekend. We just enjoyed being together (and not at a doctor's office) playing, eating, and goofing off. The boys each got a set of goggles, fins, and snorkels this weekend. They love being in the water.

Tuesday and Wednesday were long days down in Sacramento with doctor's appointments before the radiation treatments. On Tuesday we were at the pediatric oncologists office for his weekly check-up. His blood work looks good right now and his weight is fine. He gained a bit over the long weekend. Must have been all that steak and whole milk! He also got his first dose of chemotherapy. It was a small amount and was done quickly. Thankfully, it didn't seem to affect him much.

We had some time to kill before the radiation treatment so we went to the mall. Sandie and I took turns walking with Kyler and looking at fun stuff while the other snuck off to the food court to grab something to eat. He didn't suspect anything.

Having been off for three days, it was hard for Kyler to go back for radiation. The anticipation of what the 'sleepy medicine' does to him makes him anxious. Wednesday was the most difficult so far getting him back for treatment. Sandie and four other people had to hold him still while they started the anesthesia. The good news is that Wednesday was the best post-treatment so far. He was still grumpy and whining when he was coming out but he wasn't screaming, thrashing, hitting, or kicking this time.

They did some tests to check Kyler's kidneys today. We don't know the results yet. He gets his ears/hearing checked next.
The pediatric oncologist wanted us to make sure we are taking care of Kyler's teeth since they are in the radiation field during treatment. We are thankful for the dentists who are working with us to try and protect his teeth.

I am trying to get a rush put on a wish from the Make a Wish Foundation for a week trip to Disneyland this summer during the month in between radiation and chemotherapy. I'm hoping to be able to stay in one of the resort hotels and really be able to enjoy the whole package before his body gets wiped out during chemo.

We are getting a chance to meet some of the people who are regularly in the office for radiation treatments. Neat people.
We have much to be thankful for. So many of the stories detail long periods of misdiagnosed symptoms before the real problem was discovered. It was God's grace that allowed Kyler's to be found so quickly.

God's grace and peace to you. Thank you for your prayers and support.

Memorial Day Weekend

After a really rough start to radiation, Kyler has responded better over the last two days. We let him sleep a bit longer after the treatment before getting him up and that seems to reduce the length of the angry physical reaction. He was also able to keep everything down that he ate. This helped ease our anxiety a great deal. He was running around outside and seeming like himself. The boys were even able to get into the spa tonight for a bit so Kyler could try out his new goggles!

When we go for a treatment, he knows what’s ahead and he doesn't like the way it makes him act. "What if I get grumpy again?” he asked.
"It's o.k. we still love you even when you're grumpy."
The 'sleepy medicine' makes him act in ways he doesn't want to and he can't control it. It's no wonder he is anxious about it.

Your prayers specifically for lack of nausea, increased appetite, and less irritable side effects from the anesthesia have had a significant impact. It is directly related to all those who have petitioned God on his behalf. Thank you from the bottom of our hearts.

We have a long weekend to try and fatten him up! He weighed 35 pounds last Tuesday and we are praying for the same weight or more this coming Tuesday.

Please continue to pray for Kyler during his radiation treatments. It will be around the 2 to 3 week mark that some of the more significant side effects would be noticed (sore throat, skin irritation, etc.)
Sandie and I could also use prayer for the following: Sleep. Neither of us has been getting consistent uninterrupted sleep. Sandie is experiencing what we feel is stress or tension headaches. My allergies are really bad this year (worse than I can remember from any time in the past) and I have to be a week off of antihistamine before seeing the allergist. I would recommend buying stock in Kleenex since I have personally increased their sales by double digits this spring!

There have been so many of you who have blessed us greatly during this time. We have received meals from a number of families. We have received encouraging cards, e-mails, letters, and scripture verses. We have been blessed with gift cards for gas, groceries, coffee, and other things. Special dental treatments for Kyler to protect his teeth during radiation was donated by Lincoln Smiles. Many of the local churches in Lincoln as well as individuals from many different places have helped financially to offset some of the medical costs. Individuals have donated to Manna Relief to sponsor Kyler to receive the nutritional supplements that will help his body stay strong through treatments. Other creative and special gifts have lavishly poured out upon us, many times from people we do not know personally. Thank you for you willingness to love on us during this time. We cannot express our gratitude adequately.

Beginning Radiation

I gotta be honest. I don't like this at all. In fact, I hate it.

As a parent you would gladly exchange places with your child in a situation like this. If there were a way I could trade places with Kyler, I would do it in a heartbeat. But it doesn't work that way. Sandie and I have to watch as our little boy is forced to endure being cut, poked, tested, filled with all sorts of drugs, and subjected to a protocol of treatment designed to heal him by taking him closer to death's door than I am comfortable.

Today was Kyler’s first radiation treatment. I have to remember that it is just the first one. Things can change. God can intervene. But if today was an indicator of how things are going to look in the future, I'm not looking forward to it.

As many of you know, Kyler cannot eat for eight hours prior to his 2:00 PM appointment at the radiation oncology center due to the fact that he will be under general anesthesia for each of his daily treatments over the next six weeks. It's hard for a five year old to go all day without eating. Our hope was that he would be able to eat well after his treatment so he would lose as little weight as possible. The doctors tell us that 50% of children have to get a feeding tube put in because they aren’t able to eat well enough after the treatments.

Well, the anesthesia they are using does not agree with Kyler. He's not allergic to it, but one the typical side effects of any general anesthesia is nausea. The other side effect of this particular anesthesia is that it makes you ‘irritable’ as you are coming out. That is a terrific understatement in Kyler’s case. As he comes out of anesthesia he screams, thrashes, kicks, and yells at everyone around him. The word demon-posessed came to mind. It was very difficult to drive home with Kyler in the back seat pounding my seat with his feet, screaming at the top of his lungs, trying to hit Sandie, and telling her that he hates her. It was very difficult not to get angry with him. But those of you who know Kyler know that is not who he is. He is compassionate, self-less, and generous. It was so hard for me to hear him say in between sobs, “I can’t control my grumpy feelings!”

He wasn’t able to keep anything down tonight, unfortunately. We continue to pray that he is able to eat in the evening after his treatments. If he loses more than 10% of his body weight, they will have to put in the feeding tube. He only weighs 35 pounds right now. It doesn’t take a mathematician to figure out he can’t lose a lot of weight.

In all this, I echo the Psalmist’s cry that he raised up toward the end of many a lament over difficult circumstance, “Yet I will praise you.”

Thank you for your continued prayers and support.

Continued Prayer

Kyler begins radiation treatments this Wednesday. There will be 31 treatments happening everyday except weekends (and any holidays that fall during the week). On Tuesday we visit the pediatric oncologist again where they will access his port and administer his first chemo treatment. He will be receiving Vincristine that day. They tell me it's a quick IV push and it's done. We shouldn't be there more than 1.5 hours. There are few side effects with this drug and he shouldn't experience the nausea normally associated with chemo. He will be getting this drug once a week during the radiation. We will receive a road map for the treatments ahead on Tuesday when we meet with the doctor.
Please pray that the radiation treatments go well and that the typical side effects would not be present. Pray for the protection of the normal, healthy cells.

Blessings,

Darrell

Good News!

The spinal tap came back clear! Thanks for praying diligently with us. We got the call finally at around 6:30 PM Thursday evening.

Continue to pray for the protection of Kyler's body as he begins radiation next week. We want any remaining cancer cells dead but healthy tissue to remain unharmed. Pray for the protection of his brain, spinal column, thyroid, eyes, and other surrounding important tissues and organs.

Thanks

Spinal Tap

As of Wednesday night we still haven't heard the results from the spinal tap. We're hoping to hear soon.

The date has changed again of when he will start radiation. Wednesday the 24th will be his first treatment.

Thanks for praying!

How can I help?

We've been asked that question so many times. It's been so comforting to know there are so many people that are willing to do anything at a moments notice. At first we were a bit paralyzed not knowing how to really answer the question. This has been our first experience with this and as such we haven't been certain of what we might need or what would be helpful. Several times I've told people, "I'm making a list and I'll let you know what's on it so you can choose something."

Well, here is the promised list. I'll put the list toward the end of this post. You can e-mail me at dkhaskins@surewest.net with a response. I can get you additional information or give you our mailing address if needed. You also might think of something we haven't even realized we might need or would be helpful. God may give you something specific that would be a blessing.

More than anything else, though, your continued prayers are desired. That is truly our daily support and strength, the grace God continues to give us because of your continued intercession on our behalf.

1 - Nutritional Supplements for Kyler - he is sponsored by Manna Relief, a non-profit organization that helps get important nutrients, vitamins, and other things into his body that will help him as he fights the cancer. All donations are tax deductible. This is the very important for us right now, but it's not covered by our health insurance. To contribute toward his account, go to www.mannarelief.org. On the top bar click on the Hope Program (for individual children), then click on the 'make a contribution' button. Fill in an amount next to the Hope Program and scroll down to follow the instructions for payment details, etc. In the comment section please fill out his full name (Kyler Haskins) and his ID # (86331).
2 - Gift Cards - for gas, groceries (since we've gone all organic), whatever else you think might be helpful.
3 - Child care - it will be even more important that Sandie and I have time set aside for us to be together and get out for a bit or help with Kendrick while we are with Kyler.
4 - Yard work - sometimes I can't get to mow the lawn or do some weeding, my sprinkler system isn't working properly, etc.
5 - House work - ocassionally we get behind with stuff with so many trips to see doctors.
6 - Car maintenance - we will be putting a lot of miles on the van (oil changes, brakes, etc.). We have new tires so that's good.
7 - PC repair - Sandie's computer is freaking out right now and I don't know what's wrong.


Thanks for using the gifts and talents God has given you. You are truly a blessing.

God's grace and peace to you.

A Long Day

Well, we had a long day at the Radiation Oncology Center (ROC) as they prepared everything for Kyler's radiation treatments, which we found out today will begin on the 30th. That is good news because it gives us a bit more time to get his body ready for what is ahead.

We left the house just about noon and didn't get home until 7:30 PM. He spent around 3 hours asleep on his stomach as they created the body mold and made the little tattoos for reference markers. They look like little freckels. Everything went well. It took a while for him to wake up since they had to give him a pretty good dose of the 'sleepy medicine' to keep him out for so long. Boy, was he grumpy as he woke up. He kept whining and pulling the blanket up over his head.

Eventually we got out of there and headed home. We stopped at the restaurant of Kyler's choice on our way back. Kyler was very hungry since he hadn't eaten anything since 5:30 AM. He can't eat for 8 hours before receiving general anesthesia and can't have anything to drink for 2 hours prior. Pei Wei was Kyler's choice for dinner (a casual dining asian restaurant owned by P.F. Chang's). We also stopped by Jamba Juice quickly to get something yummy in which to hide some of the nutritional supplements he is taking. It worked like a dream. We also snuck in one more shake before bed. We are so happy he was hungry and kept everything down. Our hope is that he will eat well after the treatments and take a good breakfast the following morning since he will have to go all day without eating before each treatment.

Tomorrow morning will find us back at Sutter Memorial Hospital at 5:30 AM getting ready for the spinal tap and the port-a-cath placement.

Pray the spinal tap shows no cancer cells in the cerebral spinal fluid and that the surgery goes smoothly.

God's grace and peace to you.

Encouragement from God's Word

Today our family received a stack of encouraging verses and promises from the Scriptures. It was a huge blessing. We will be hanging them around the house to remind us of God's love, care and abiding presence as well as the love of our family in Christ.
It made me think about how much we really need this right now. If you would consider taking some time to pray and look through the Scriptures and allow the Holy Spirit to give you a verse for us and put it on a 3 x 5 card or something else creative, we would love to fill our home with them. If you need to mail them to us, please send them to 325 Ragsdale Court Lincoln, CA 95648.

God's grace and peace to you,

Darrell

The Next Steps

We met with two doctors on Thursday afternoon.

The second doctor was the surgeon who will install a special port just under Kyler's collar bone that will allow the chemotherapy to be administered without having to place a new IV each time. They can also give medicine and take blood through this port. It will look like a lump under his skin and they will put a numbing cream on him when they have to access the port through the skin. This option allows him to swim this summer and requires less maintenence than the other type which is an external tube that needs to be cleaned daily and has increased risk of infection.

The first appointment was with another of the pediatric oncologists, a social worker, and a nurse. They wanted to meet with us because we had brought up the idea of waiting to start the radiation and chemotherapy. Our thinking was that if the spinal tap came back clean that we might wait 30 days and test again to see if anything shows up. If we could postpone the radiation and chemotherapy that would be wonderful. He could have more time to heal, get stronger, and get his immune system up to full capacity. We have made some extensive changes in our home and diet that we are thinking would be helpful in allowing his body to do what it needed to fight this on it's own with the proper nutrition as well as eliminate toxins in his system. We have removed almost all of the food in our house that is not organic and begun two types of nutritional supplements. One helps with the elimination of toxins in the body and the other helps the body get the nutritional elements it needs for a fully functioning immune system. It is our hope that this will help prepare his body for radiation and chemotherapy.

They weren't too excited our idea. Apparently the protocol based on many years of case studies gives patients the best chances if the treatments begin within 28 days of surgery. The longer we wait the more likely it is to spread to other places in his body. I know, I was thinking that since 100% of the tumor was taken out that if his spinal tap came back clean that meant it was no longer there. The spinal tap will only tell us the extent of his disease, whether or not cells have migrated to other places in his cerebral spinal fluid. They were very clear to make us understand that he is not disease free at this point. His disease is on a microscopic level right now. There are still cells remaining in the area where the tumor was. You can only cut out so much with a scalpel. They told us that on a scale of 1 to 10 (1 being cancer-free and great and 10 being widespread cancer with no hope) that Kyler was at a 5 right now. The type of cancer we are dealing with is an aggressive and fast one. This has put him in a high risk category as opposed to standard risk. Because he is high risk, he is not a good candidate for a clinical trial that is evaluating the effectiveness of lower dosage radiation on a medullablastoma. He will be receiving the standard dosage and following the protocol prescribed. They have given us a 10% to 40% chance that the treatments will work and cure him. This is measured by a patient being cancer-free after five years.

Our hope is completely in God right now. The medical community has little to offer in this way.

On Monday the 15th Kyler will spend four hours at the cancer center getting everything set up for his radiation treatments. The have to create a body form for him to lie in during the radiation treatments as well as tattoo him with some pin head sized markings so they can make sure everything is properly aligned using lasers. There will be 31 treatments happening every day except weekends. This will take about six weeks. He will have to undergo general anesthesia for the treatments since he will be incapable of remaining completely still. It's not going to be a good time for him. He already hates going to see the doctor now. It takes 'a long time' to drive there and it's 'boring'.

Tuesday the 16th we get there early in the morning for the spinal tap and surgery to intstall the port. They will both happen while he is under general anesthesia. He will be able to come home and recover the rest of the week.

The week of the 22nd everything is going to change. He begins radiation treatments in conjuction with a small chemotherapy treatment. After the six weeks of radiation that will entail full brain, full spine, and a focused boost on the tumor location, he will get a month off. The chemotherapy treatments will begin after that.

We entreat your continued prayers and support. Thank your for your perseverance.

Please Continue To Pray!

Greetings:

As you most of you know, Kyler has been able to come home earlier than originally expected. He continues to recover from the surgery and is improving well.

He was home for a full day on Thursday before having an appointment on Friday afternoon with the oncologist who will be supervising his radiation treatments. We learned more specifically what type of cancer cell we are dealing with. It is an aggressive type of cancer cell called 'large cell anaplastic variant'. I'm learning more than I ever really wanted to know about cancer right now, but it's good for me to get as much understanding as I possibly can.

Sandie and I feel like we are swimming in an ocean of information and required to make life-altering decisions for our son on a subject of which we have little knowledge. The hardest part for me was listening for 20 minutes about the potential short and long term side effects of radiation. Of course they must give us all the information up front, but it didn't make it any easier to hear.

Kyler will require general anesthesia for the radiation treatments since he will be unable to remain completely still for more than a few minutes. They will make a body mold in which he will lie to ensure he remains still during the treatment. There will be 30 to 31 treatments and they will be every day except weekends. This is going to require a great deal of time commitment from our family since the treatments can only be done in Sacramento.

His spinal tap will happen Tuesday the 16th and will give information about whether or not there are any of the cancer cells floating around in the rest of his cranial spinal fluid. This is a big deal and we would request your prayers for the cranial spinal fluid to be free of any of the cancer cells.

Again, there are a few things in his favor going into this.
1) It was caught early (truly the grace of God).
2) The tumor was completely removed.
3) It had not spread to other parts of his brain or spine.

The doctors seem to agree that Kyler is going into this in about the best condition you can. The type of cancer he had is fast moving and aggressive. If it had not been caught when it did, it could have been much more devastating.

Please continue to get as many people praying as possible for our family. Not only for Kyler's condition but for Sandie and I as well. There are times we feel completely overwhelmed. We are having a hard time sleeping and eating. Sandie is dealing with anxiety. We want to make sure Kendrick does not feel neglected in this as well and understands as much as he can about what is happening.

We also need wisdom. There is a multitude of 'natural', 'holistic', 'alternative medicine' options all readily available via the internet claiming extraordinary results. We don't want to be stupid and start grasping the ridiculous. Neither do we want to neglect viable treatment options. This is especially difficult since we are not experts in any medical field. We are having to trust other people so much. Sometimes that is difficult.

Thank you.


Darrell Haskins
Lead Pastor
The Foundry

Kyler Is Home!

Greetings to all who have been supporting us in prayer and action:

When Sandie and I left the hospital today we were able to bring along a special little package. Kyler is home!
We had to bring two wagon loads of stuff down from the sixth floor that had accumulated during his week-long stay.
He continues to improve and is very happy to get to sleep in his own bed tonight with his brother just above him.
He has a check-up this Friday and his first spinal tap is a week from now.
We will be finding out more about future treatments after the results of the spinal tap come back.

Please pray that his eyes will go back to normal (he's a bit cross-eyed still), and that his balance skills will gain strength.
Also, be in prayer about the spinal tap. The results will determine how aggressive the radiation and chemotherapy will be.

God's grace and peace to you,


Darrell Haskins
Lead Pastor
The Foundry

Biopsy Results

Monday and Tuesday have had their up and down moments.

We finally heard back from the lab on the results of the biopsy on Kyler's tumor. They finally came out and used the 'c' word.
The tumor was cancerous. Without treatment, it would come back, grow, and spread.
Kyler has his first spinal tap a week from this Thursday to check and see if there are any cancerous cells floating around in the fluid.
The aggressiveness of the treatment will depend on if they find any or not and the concentration of the cells if they are present.
Even if the results come back clean they will still have to follow through with some level of radiation and chemotherapy.
The process will last one year.
The chemotherapy will make him more likely to get sick and get infections due to the compromise of his immune system.
Everything becomes a big deal. A fever will send us to the hospital. We will have to carry copies of his most recent CAT scan with us at all times to be able to give to a physician in case of an emergency.
Needless to say, Sandie and I took it kind of hard. For myself, I guess I had been in some level of denial thinking, "Great, the tumor is gone, he's improving at the hospital. We can start to get life back to normal." The idea of a year long process took me back a bit. They have indicated that the radiation would probably be everyday (except weekends) for a six week period. That's going to be a challenge.
The good news is he is improving very well at the hospital. He sat up twice for a half hour periods on Monday and the physical therapist, the occupational therapist, and the speech therapist are all very impressed with his progress and recovery.
Tuesday was a big day. They discontinued using the IV for medication and began administrating them orally and they removed the drain from his head. Now he's mobile! They feel very confident he won't require the permanent shunt in his head. Thank you for your prayers regarding this aspect of his recovery. We took several rides in a special car used by pediatric patients to cruise around the floor. We went to the playroom twice today and walked a bit. He has to have someone hold his hand still because his balance hasn't completely returned yet, but he's raring to go. They removed the bandage from the incision and it looks to be healing very well. The toughest part for Kyler is the removal of the tape as it pulls all the little hairs.
He didn't like the staples they put in where the drain was at all. That was hard to watch.
The only wires he's hooked up to now are the ones to little patches on his chest and finger monitoring heart and respiratory rates and oxygen levels.
We have been so blessed by the help people have given us. Hotel rooms, gas cards, gift cards to various stores, Starbucks cards (hallelujah), and the like. I came home the other day and someone had mowed my front yard. People have pulled weeds in my back yard. Someone cleaned and fixed our spa. People have brought meals and have offered to watch our kids so we can go out on a date. Thanks again for all you have done through your tangible acts of service and sustained prayer. You'll never fully appreciate how much they mean to us.

Please continue to pray for the following:
Spinal Tap - that is comes back clean so we can take a less aggressive course of treatment.
Vision - that Kyler's brain would get back to normal so he doesn't see doubles anymore.
Balance - that the areas of motor skills and balance would return to normal
Strength - for Kyler as he continues to heal and for Sandie, myself, and Kendrick as we walk with him down a challenging road.

For all of you who have said, "If there's anything we can do, let us know", be advised Sandie and I are working on a list and we will take you up on it.
Thanks again.

Blessings,


Darrell Haskins
Lead Pastor
The Foundry