Fundraiser

As many of you probably already know Collin has been doing Tae Kwon Do and is now a purple belt and maybe this week will be a high purple belt. One of the amazing things about his studio is that every year they do a fundraiser to support the MACC fund. The MACC fund is a huge part of the research that is done at Children’s Hospital of Wisconsin where we go. The MACC Fund clinic is also where he goes every three months for his appointments and is where he went all through treatment.
The fundraiser he is participating in is called the Board Break-A-Thon Fundraiser- to benefit childhood cancer and related blood disorder research. It will be held Saturday Feb. 28th from 10-5 at Bayshore Town Center. He is one of the students being featured for this event. The cool thing is, for this event there are other Tae Kwon Do students who have battled cancer who will be coming back for this event as well. In fact, there are adults who have been in remission for years that will be there. For this fundraiser he and other kids who raise money will be breaking 5 boards each for the money they have raised. Collin is not only super excited about breaking the boards but also raising money for the MACC Fund. Here is a link in case you are interested in donating. The donation can be made right on the website and it’s really easy. Any amount of money you’d be willing to donate would be greatly appreciated and would be used for something very important.
2/2/2015

2/2/2015

Prayer Request

Was hoping to ask for some prayers. Last week Collin complained of leg pain again. He didn’t wake up screaming and wasn’t limping but the leg pain is still something we take very seriously and causes both mom and dad to fear. I took him to the chiropractor and they said that his pelvis was very twisted. This is probably due to the fact that he was sledding everyday last week and climbing sledding hills and pulling sleds and just being kind of crazy. However, leg pain is not something that is easy to rationalize away in this house, especially since that is how he was originally diagnosed. He only complained of it hurting for like a day but it was still a very stressful 48 hours of getting him adjusted and waiting to see if he complained of pain anymore. As our oncologist likes to say “it’s not the pain that come and goes that you should worry about, it’s the pain that come and stays”. Waiting to see if it comes and goes or if it stays is INCREDIBLY hard. This morning when he was about to go to school he said his shin hurt really bad. I checked to see if he bruised it and nothing. On the way to school I asked again and he said it was better. But I called school later and the nurse asked him how his leg was and he said worse. So I made a call into the clinic and they said to monitor it and if I’m concerned to take him into the pediatrician. There is a huge part of me that was just hoping that they would say they’d scan him and do blood work because then we would just know instead of sitting here wondering. Before I called the pediatrician I wanted to personally talk to Collin, so I loaded the boys up and took them to school and asked him myself how he was doing. He said it was better but that his groin had hurt him a bit too when his shin was hurting. So now I’m waiting to see how he feels after school and if it’s bothering him again we will make a trip to the pediatrician. I as specifically that you pray for us as parents as we wait this out that we would have peace and that Collin’s leg pain would go away and not be a sign of something bigger. I know that pregnancy makes this mom even more anxious than normal, but I will say I could really use your prayers because I am so anxious. So any prayers would be GREATLY appreciated. Thanks Amanda

CLEAR SCANS!

Just a quick note to let you all know that Collin’s scans this week were again clear! His labs looked pretty good as well which was great to see. More to update on but will do that later. Just wanted to let all of you know how it went. I can’t express to you how thankful we are and how grateful I am for these continued blessings. I can barely even look at him right now without crying because I am thankful beyond expression that he is here and I can hold him and that God’s miracles in our lives have continued to be so obviously seen. Thank you doesn’t seem enough for your continued prayers but please know how grateful we are for them…. Have a blessed Christmas. Hard not to think of the true meaning of Christmas in all of this… there was a mother years ago who watched her Son die on my behalf… unspeakable….

Update 12/4/14

Well it has been a while since I posted and we have some things coming up so I thought now was probably a good time. The last few months have been busy and wonderful. Collin has been doing well in school and working hard on learning his Bible verses, homework,  and Tae Kwon do. He also loves doing projects and so my dining room has been converted into a craft room. I’ve given up using it as an actual eating place unless we have people over… Anyway, I will post some pictures of the past few months so you can see our fun happenings. It’s been very nice spending time together as a family and living a “normal” life. As his mom I have made huge strides lately in where my mind is and I hope and pray it keeps going that way. I have been able to answer calls from the school without immediately thinking it’s cancer related and I was even able to wrap presents the other day without the thought of his diagnosis crossing my mind (I got the call he had cancer when wrapping presents). These may not seem like big things, but they really are. I have less anxious days and more wonderful days which is a welcomed change.
Collin has scans coming up the week before Christmas. He has both an MRI and CT scan Thursday, December 20th and our appointment with his oncologist is Friday afternoon. The CT is what he usually has for checking his tumor and he also has blood work done when they do his IV to check for signs in his blood work as well. He is also having an MRI this time that is specific to checking for iron storage in his liver and heart. If you recall on one of my past updates, I indicated that one of his levels was high. Long story short, there is a new protocol for cancer kids related to iron overload. This iron overload occurs because of the countless transfusions these kids have to get to save their life. Unfortunately though, these same life saving measures could have long-term negative side effects and really affect some of his major organs. So they are now checking kids who have a Ferratin level of 500 or over for these overloads. The liver they check because that is usually the first organ to retain extra iron (from my understanding) and the heart is the “last” organ to retain. So by checking both, they will have a clear picture on how progressed his overload problem is. I’m praying they see nothing, but we will see. Once I know the results I can update you on their plan, but I’m not going to post all the “what if’s” now as there are many. He will have these done on the same day because he will already have an IV in place for the CT and I asked for him not to have an additional IV put in that week as it is never an easy thing for him. He has to be sedated for the MRI so hopefully that goes well.
He has been doing so well that I have little reason to believe they will see anything on the scan, but one never knows. His stomach has taken a turn lately for the worse due to him getting strep throat and needing to be on medication so extra prayer for that as well would be great. Thank you for all who continue to pray. As we approach this time of year, I am VERY aware of how blessed we are and how different out lives looked 2 Christmas’s before this one. We are thankful beyond expression that Collin is here and doing well and pray that his past cancer dealings and his future life can bring glory to God for all He has given us.
One more note… we are again participating in a fundraiser for childhood cancer. This one is specific to the MACC fund. The MACC fund is used primarily for research at the Children’s Hospital of Wisconsin, but the clinic he is seen in is also called the MACC fund clinic. Collin’s Tae Kwon Do studio does a yearly Board Break-a-thon to raise money for this and this year Collin is participating. If you are looking for some place to help, this is a great cause. As my husband so nicely stated in his FB post “Collin is in Twa Kwon Do now and is doing awesome. He is testing for his purple belt next week. JK Lee is a big supporter of the MACC fund. Please consider supporting a very worthy cause. No kid deserves to have cancer..!!” Here is the link in case you’re interested in checking it out or helping us. Thanks for your consideration! 🙂 Collin Anderson’s Personal Page for 2015 J.K. Lee BBAT
Thankful for…
* A God who is not so high that He cannot hear or cannot have a relationship with. He hears and answers prayers and we can have a very real and personal relationship with Him.
* Another year with Collin- a healthy Collin and a healthy Grandpa A. A year of unquestionable answered prayers and so many treasured moments.
* The strides Browyn has made in her treatment! PRAISE GOD!
* The wonderful family God has blessed us with- immediate and extended.
* The amazing friends and prayer warriors we have!
* Your prayers- even now the knowledge of those prayers is one of my greatest sources of strength.
Please pray…
* That these upcoming scans would show no signs of cancer and continued signs of the power of God.
* That the MRI would go well and that if they see something, it would be something that can be taken care of.
* For strength and peace this month as this is always a hard month- the month he was diagnosed.
* For Sam’s family. Very soon he will have been gone for a year and I know his absence is still heavily felt by the family.
* For continued healing for Browyn. That she would be able to withstand her feeds as they turn them up, that she would be hungry again and that she would continue to show no signs of cancer.
* That Collin’s bowels would heal.

 

 

 

 

 

 

 

 

 

Update 10/4/14

     I must apologize because I pleaded for a prayer request and I have been slow to post. I will start by saying WE HAVE CLEAR SCANS! We are thankful beyond words for another clear scan. I was as usual pretty nervous about the scans and this time we did not get them the same day because we had an appointment scheduled for the next day. Due to his scans needing contrast, he had to have an IV. One of the downfalls of not having a central line anymore is that they don’t have as easy of access. We had a nurse that was super fast and kind of no-nonsense so the IV went in really fast and it was done before he had time to get too upset about it. We also had an awesome visit from our neighbor and IR nurse Danette. She snuggled him and gave him heat packs for his IV which he said helped. (We are more than well taken care of!) They also drew labs when they put his IV in so we killed two birds with one stone. Thankfully I did get his bloodwork that day and I did see that all of his numbers for his regular blood work was in normal range. I did however see that his liver numbers were still a bit high, so that is something we discussed at our appointment on Wednesday. He did well on the scans. We were very fortunate to have Heather with us for our scans. She is as I probably mentioned before, a fabulous distraction for Collin and a great support for me on a nerve-wrecking day. We also had a GI appointment the day of his scans. We did get to do something fun that day though and our friend Abby had mentioned she might be able to get Collin into the lab where she works. I should probably explain that Abby works in a building attached to Children’s where they do research. He has been so interested in what she does ever since he first found out, so that day he got to see it up close and personal. He got to go into her research lab and wear a lab coat and watch her operate on rats. He loaded her with questions (as did mom) but it was a VERY cool distraction that day for both of us.
     At the GI appointment we discussed Collin’s bowel progress. I started him on his pancreatic enzymes about a month ago. These pills have helped his bowels to be a bit more regulated. I had originally tried to give his body time to heal before starting him on the enzymes, but when we started school and things were still pretty bad I was desperate to try. So he now takes a pill will every meal and a 1/2 pill with snacks. This has decreased his bowel issues from 6-12 BM’s a day to 1-4. Obviously this has helped significantly, however we are all hoping that his pancreas is not permanently damaged from treatment and eventually he won’t need these. However, it is clear that right now he does need them. So our GI doc is consulting with another doc that deals more specifically with the pancreas and is getting back to me (hopefully soon) about how to proceed. He really would like to know if there is permanent damage and would like to know more from our surgeons and oncologists if they have a clear picture of what is causing his issues. 
     On Wednesday we met with his oncologist and obviously got our good news. Thankfully they know that as parents we don’t care about anything else until we get the results so that was the first thing they told us. After that a very large discussion took place where we discussed the other issues that we are left with now that treatment is done: his GI issues, his lingering eye issues, his higher liver numbers, and high iron levels in his bloodwork. I don’t usually write about it, but other than the main oncology clinic visits we also have to make regular visits to the optometrist (vision), audiologist (hearing), GI doc (stomach issues), and the pediatrician to catch up on all the vaccines that we now need to replace since his ones he’s had since he was a baby are now not valid due to his transplant.
      The first issue that we discussed is the iron levels in his bloodwork. I mentioned his iron levels the last time we met with the oncologist too, but the last time she didn’t seem too concerned because the numbers had improved a lot since the first time they were checked. However after 3 months they should have improved again and hadn’t. The test that showed this though is not a conclusive test as it shows inflammation in a body as well and not just iron. So Collin is now scheduled to have further blood work to get a clearer picture of his iron levels and also for the GI doc. If his iron is truly high, we have two different options: chelation or blood wasting. I have done research of my own on chelation and was rather a bit excited this was an option as it has other positive affects in other areas as well, however, our doc made me aware that this option comes with it’s own set of risks- his hearing could get worse. The blood wasting means that they would draw blood every month and put him in a long term state of anemia so that his body would be forced to use the iron it has stored. Sounds like this might be the safer option, but I would like to discuss it further. We are going to just wait and watch his liver numbers for now. They are double what they are supposed to (at least his ALT is- his AST is finally in normal range.) She is okay with that number for now though. His mother however, is taking some natural steps to try and help this. He is currently doing a cleanse and has started taking curcumin as well as his usual list of vitamins and supplements I have him on. He also visits the chiropractor weekly as well (there are countless benefits to this that I won’t go into- but staying aligned really helps with a good immune system as well as many other benefits). We also discussed his ongoing eye dilation. If you remember from treatment his eyes got very dilated and he had to wear reading glasses. His right eye has gotten better in appearance although still sluggish, but his left eye is still noticeably dilated. In the study’s where this has happened, the eye issues have cleared in 6 months. So true to form, we are headed into new territory as we are now past 6 months without resolution. So will pray that they continue to resolve slowly but surely. Our oncologist also expressed a desire to look into his GI issues a bit more so we she will be consulting with the GI doc and they both will be getting back to me.
       So long story short- we’ve come so far for which we are grateful beyond words, but still have some things to work out that are of some concern. When we know more of what is to come and what the tests show I will try and update everyone again. For now, we are enjoying our time together as a family and loving the smiles and the laughs (for which there are many!) Thank you for all who continue to think of us and pray. I can’t begin to tell you how much they are needed and appreciated by our family as well as others fighting through this journey!

Thankful for…
* A God who is has great plans for us. (It even says so in the Bible). He doesn’t promise an easy walk, but He promises that we’re not alone and that He is in control.
* Clear scans- enough said.
* The astounding progress Browyn has made!
* So many wonderful times together with family and friends and as our own little family.
* So many smiles, laughs, snuggles, kisses, and love from 3 wonderfully crazy boys.
* Grandpa A’s clean bill of health!
Please pray…
* For Browyn- that her tests would come back good and clear her for another transplant- and prayerfully one that will totally eradicate this cancer that it may never return.
* For Collin’s various other health concerns- GI issues, iron overload, eye issues, and liver numbers.
* For continued strength for our family. For help to focus on God and the blessings we are currently experiencing and answers to prayer we have received, rather than focusing on the “what if’s”.
* That because of this trial in our lives, that there will be no one that will be able to doubt the absolute power of God in all of this. “For with God nothing shall be impossible.” Luke 1:37* That this trial will help us and others learn lessons that will positively impact our lives forever- that we would gain many positives from this cancer experience and not lose any more than cancer already robs us of. * That God would bless the countless people who have helped us and that we might somehow be a blessing to others as well during this time.

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Prayer Request

Just a quick message to ask you to pray for our scans Tuesday and our clinic appointment Wednesday to find out the results. Please continue to pray that the scans will show no signs of cancer and tons of proof of God’s miracles in his life.  Even though I have no reason to think they’d find anything, I am extremely anxious so please pray for peace for our family as well. Thanks so much!   Amanda