Update 10/19/13

So it has again been a long time since I wrote. Thankfully not much to report since the last time. We’ve been keeping busy. Last weekend some of my family came to visit. We had a lot of fun on Saturday and took the kids to the pumpkin patch/apple orchard. My sister was here with her kids so Amy, Charlie, Collin and Coop got to ride on the ponies which they were pretty pumped about. They also took a hay ride, picked some apples and then it started to pour- which I have to admit was not fun but pretty funny. There was only one umbrella, so most everyone was hunched underneath it while my husband ran with Luke through the rain to get the van and Amy, Thad and I decided to rough it. 🙂 The kids picked pumpkins out of the batch that were already picked since it was raining. Then we went home, warmed up, and the kids got to paint their pumpkins. It was just a wonderful day for the kids and wonderful for this mom’s heart to see so many smiles and hear so many laughs. On Monday, we were in clinic all day because he had a regular visit and he also got hooked up to a 24 hr. IV drip with new meds for this upcoming round. These meds are similar in effect to the shots- I’m not quite sure why they switch off but they do. He will have the IV again in round 4. We had to sit in clinic so that they could monitor him after he got hooked up. I’m under the impression that Collin is the first kid to have this part of the treatment outpatient- which I’m really glad they let us do because it was thankfully uneventful and he would have been seriously bored if we had to do it inpatient. He did really well with the bag even though he was not too happy about it. We even went a few places and he carried it with no problems. One of the upsides to him having the IV bag was that we got to see our home health care nurse three times this week! Lacy is so wonderful and caring and has become a treasured friend of our family. The boys LOVE to see her which is good since she’s not always here for “fun” stuff. Coop and Collin are usually chatting her ear off and begging her to stay and play. My sister Chrissy came back on Thursday morning and we got to work on the boys room. I will post pictures tomorrow maybe… but I’ll say even though we are mostly finished there are still a few things that need to be done. Tonight is the first night (other than one other flukey night) that Collin is sleeping in his room in almost a year! They are very excited about their room, but honestly I think we are too. It turned out really cool and it was a labor of love between Tom, Chrissy and myself and the boys even helped paint. So we will see how tonight goes! Tomorrow we are going to try and go to church since we were told we didn’t have to be there until noon I asked them if we could stretch that a hair so we could go and they said that we could! Not sure if we’ll still get to come home in the afternoon, I think so but you never know… so starting tomorrow we’ll be in the hospital for another round of antibody therapy until Friday assuming all goes well. I will be talking to them on Monday during rounds regarding his numbers because they just are really having a hard time bouncing back after transplant. I knew this was expected but I guess I just figured it would take a month or two extra not indefinetly. To clarify his white count is pretty high right now because of his IV meds used to boost his immune system and even without them they were decent- not normal yet but decent. However, his platelets and hemoglobin are really being slow- not horrible but definitely not within normal range. They did look at his bone marrow when they did the biopsy to see what the marrow told us and they said he had very little scaring. There was some there, but not too much- so I’m curious what their thoughts are about his counts if the scaring is very little… 
In other news he is also very much growing hair finally! He has a good layer of real hair (not fuzz) growing in- it’s slow but that’s not surprising since he didn’t even have hair until he was 1 and didn’t have his first hair cut until he was past 2. So it is exciting to get to a few of these “milestones”.
So not much else to report other than we’ve been spending priceless family time together- even the hard days where the boys are fighting are worth it if we can all be together and the more we are together the more we learn how to be together. Today was a great example of them finally getting used to each other. I was busy cleaning up some things tonight after the chaos of redoing their room and all the boys managed to get into our bedroom. When I walked in the check on them they were all goofing around, smiling, laughing and just having a great time together. Man how I wish I could bottle those moments and I’ve been tempted just to set our video camera up on constant record… It was also fun this week because lately Collin has been learning a Bible verse a week for Sunday school and lately Coop has been trying to do it too. The verse this week is “Our help is in the name of the Lord, who made heaven and earth.” I will start the first word and then Coop rattles the whole thing off, or randomly walks around the house and says it. It is so cool how much he picks up on and his excitement about learning verses like his brother! 
Today I was finally able to create the “Courageous Collin” Facebook page. This page as well as this website will be used to communicate with people who would like to help us help others. As you already know God has really spoken loudly to me that there is an obvious need to help other families. Children’s does a GREAT job of taking care of our kids and they really try to help the families, however I believe we could do more to help the parents. There are so many families that have no idea what is wrong with their child when they are sent to Children’s. They only have a bag packed with a change of clothes many times- these same families lives are suddenly changed when they are told that they are now staying for months straight. So many families have to run to stores just to get basic essentials. I am really hoping to put together “essential” parent bags for new families and families who are there on “emergency”. These bags will include things like travel sized shampoo, conditioner, deoderant, toothpaste, toothbrush, razor, shaving cream, and body wash. Just something to let parents know that they aren’t forgotten and help them out with things that are easily missed but essential when you are in survival mode. So if you are looking for a place to help out, we would love your help. If you have any of these items that are unopened from hotels or you would be interested in purchasing them, you can send them to our address that is on the page and I will put them in the care packages. If you would rather help monitarily, then you can send a check or cash, but please specify that it is for the “Courageous Collin” organization versus something that is to help our family. That way your donations go to the right cause! I am also looking to made hats for the kids on a regular basis. This has been something I’ve done for Collin and other members of my family as well as past students of mine, but it is a great thing to do for the unit and rather relaxing at the same time. If you happen to have thicker yarn laying around I would love to have it or if you’d like to purchase that and send it to help the cause that would be great as well. Anything you would be willing to do to help would be so appreciated and would really help us to help the other families and kids at Children’s! If you need more info don’t be afraid to email me, otherwise you can also check out our Facebook page where all the info will be readily available. Here is the link…. Courageous Collin Facebook page
Anyway, there are my few fun items to share and be thankful for and an update since this one is way overdue!
Thankful for…
* Huge answers to prayer- we have been so richly blessed thus far- protection and successful induction chemo, protection from major issues from septic shock, complete removal of the tumor, healing from chylous fluid issues, smooth and successful transplant, help through radiation, and help through the first round of antibody therapy. I would like to point out those are just the major and obvious ones- there are countless more than that that have been answered in addition to this list!
* A God who is faithful and gracious throughout all moments of this journey.
* The support of so many. We can’t even begin to list the so many people we are thankful for. Every big or little thing counts- prayers, financial support, meals, help with our other children, cards, notes, and so much more. There have been many moments, even recently, where something has been perfectly timed and so needed and these moments have really helped strengthen us and get us through.
* The three amazing boys that God has blessed us with. I can’t even begin to express how thankful I am for them and thankful that God chose me to be their mother. They are each so different and each so amazing in their own way. So blessed…
Please pray…
* That this next round of antibody is successful but uneventful and that he even would eat during this round.
* That he does not have issues with anaphylaxis, fluid issues, blood pressure issues or any other issues that can occur.
* That he is not in too much pain and that they are able to keep it under control without him getting additional night terrors. Please pray that these go away as he has been having them at home too and that is one of the reasons he is scared to sleep in his own bed.
* That the other two boys do well again this week and that dad has strength, patience and energy to help them throughout the week.
* That I would be able to keep my eyes on God and not on the raging waters around me. That I would be encouraged and strengthen by the answered prayers we have already received.
* That Collin’s appetite would continue to get bigger and that he would start to gain weight instead of lose it as well as retain essential nutrients and fats. HE GAINED WEIGHT THE LAST TWO WEEKS! KEEP PRAYING!
* That Collin’s bowels would slow to a normal rate and that this complication would not be lifelong. That he would not have to always worry about being near a bathroom.
* That the divine shield that has been protecting him will continue to be strong and that he would not get sick or have any other complications.
* That his cancer will NEVER return and that this experience can be used as an example to Collin and others of the power of God.
* For Browyn- Browyn’s chimerism study results came back this past week. This test shows what percentage donor cells and what percentage recipient cells she is making.  It came back as 96% donor – which sounds great, but is less than 99% which is what they really need to see. The doctor said that they don’t know which cell line is making that 4% recipient cells. This 4% could be good or bad cells so please pray that these cells are NOT Leukemia cells and for continued strength for her and that she would continue to have a divine shield about her and that the transplant is successful and her cancer NEVER returns.
* That our entire family will feel the nearness of God in our lives and that His power will be proved to us and to all around.
* 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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Comments

Update 10/19/13 — 1 Comment

  1. Thank you for the update. What precious photos!
    Love your idea of care packages! I’ll start collecting 🙂 Continuing to pray for your darling family!