Update 12/30/13

I always look at my last post before I update my next one and wow, it has been a long time since I wrote. Probably the longest delay in updates- sorry about that! We’ll start by saying that we had a pretty nice break from clinic these past few weeks. We were given a week and a half off between visits (which is a really long time for us). We were seen on the 23rd in preparation for antibody therapy. The reason we were seen then is because we were really supposed to be seen on the 25th, but obviously regular clinic isn’t open on Christmas and they don’t like to bring the kids in on holidays which is nice. So we had to be evaluated on the 23rd so that we could be cleared or not cleared to proceed with treatment. We couldn’t delay this visit because of protocol. At that visit his liver numbers were the best they’ve been probably since he started treatment- however, I should say that we are cheating because we are back on his liver meds… but we’ll take it for now. This also means that he can go back up to the full dose of retinoic acid which is good. His blood counts were also good too. For the first time since transplant his platelets are now in the normal range (actual normal not cancer patient normal). His hemoglobin is still a bit sluggish but they can’t really say why that is- it’s not horrible by any means but I’d love to see it higher. His eyes have been a key part of every appointment because they are looking to see if his pupils are improving. They are but it is a VERY SLOW process. His left is still bigger than his right and they are still both sluggish in responding to light, but improving. Now the reason this is important is not just because they want his eyes back to normal, but they need to be good to proceed with going back to the regular dosage for antibody. As you may remember, last round he was at a 50% dose reduction because of his eyes and his liver. So last week they said that they’d check them again this week because they were skeptical we’d be able to proceed with the full dose.
Last week we also were able to deliver 20 care packages (10 male and 10 female) and some other supplies to the Hot Unit. The packages turned out beautifully and I would have taken a picture but we obviously had clinic so I had too many things going on to remember… (sorry!) I am so thankful for so many of you helping to support this burden of mine to help other families. I really think these will be helpful practically and I’m also looking to reach out to other families personally as well. It is really cool to talk to Collin about things like this, because he asked why we were doing this when we took them and I explained a few things to him. It was such a great life lesson moment and I pray he becomes even more of a part of it. He really loves it when we take the hats I make (and others send) because he loves his own hats I make him and loves being a part of giving them to other kids. He always checks the table when we come in for clinic to see if people have taken our hats.
On Monday after clinic we had planned to go to Blue River to see Grandpa and Grandma for Christmas, but Monday morning I got a call from Grandpa saying that he had just been into urgent care and that the doctor said he had rotovirus (I think that’s what it was called). So we had to cancel our trip (or so we thought). The boys were so sad, but thankfully Grandpa called the next day and said he felt better. Now I will admit that mom is a skeptic (and Grandpa and Grandma know this about me by now that I’m really cautious…) so I called the clinic and asked our primary onc. what she thought about us going and she cleared us to go. Boy were the boys happy, but mom had some mad packing to do as I had stopped packing midway on Monday when I found out Gpa was sick. So we loaded up the boys and went to BR once Tom was done with work. It was really nice to be back there as we haven’t been back there overnight in months, in fact I’m pretty sure it was before his surgery in April…. maybe not, but it’s really hard to remember as this year has all run together and flew by. Isn’t it kind of ironic that it flew by… probably a good thing since a lot of it wasn’t pleasant to say the least. Anyway, Wednesday Tim and Becca (Tom’s brother) came there as well so the kids were just so excited. I didn’t see too much of Collin from Wednesday to Thursday as him and Hannah were off playing all the time. Was so wonderful to just feel “normal” for a while and to see them playing together without him having to be hooked up to things, or weak, or not eating, or whatever else. The only medical thing we had to do was his meds and flushing his line every night. Otherwise he got to be just a normal kid playing with his cousin. All the kids really enjoyed their time together and I enjoyed getting to snuggle Max (Tim and Becca’s baby boy who is now over a month old.) I didn’t get a lot of snuggle time with Lukey in fact as I write this I just realized that Max is actually older when I held him then Luke was when Collin was diagnosed. Anyway I’ll leave that thought for some other time because I could write forever on that subject…
Thursday night my dad came and picked me and the boys up because Tom had to work Friday (he joined us Friday night). So we went to my parents and all of my siblings were there and the fun began again as Collin and Amy were able to play together. We spent a fair amount of time in the snow and sledding and it was a blast. Collin really wanted to go sledding and he loved going Sat. because not only did he get to go with his cousins but he also got to go with Chrissy and Alex. I think we all had a blast. (Even Lukey although he fell asleep on the tube before we were done…) Collin actually walked up a pretty big sledding hill, by himself, at least 10 times. I can tell you with certainty, that he has not done that much physical activity since he was diagnosed over a year ago. I couldn’t believe my eyes. He just kept sliding down and walking back up, sometimes even caring a tube. The kid that asks to be carried at the hospital because his legs are tired… I almost cried our of pure joy and excitement at how much he was able to do. To other kids they had no idea, he had a face mask on because it was cold and so there was nothing different about him- just him getting to be normal. I know that most other people will not ever know this kind of joy from seeing their child just be able to climb a sledding hill, but I will say that the joy it brought to me was considerable and marvelous and such a large blessing. Collin also spent a lot of time with Uncle Mike playing army guys and rubber band guns. They set up army guys on top of shoe boxes and sat across the dining room table from each other shooting army guys down. Whoever knocked all the others down was the winner. They did this at least 3 times during the weekend and gradually the game grew to include many others so we had to form teams. Again another moment that just makes me stop and appreciate the simplicity of his laughter and smiles (however not simple in light of everything- a wondrous answer to prayer). On Sunday, we all went home and then the boys got to open their presents which they were very excited about.
Today we had clinic again. I will start by saying that today he weighed in at the most he’s weighed since we started. He is almost 40 pounds! Again- what another huge answer to prayer! The reason for today’s visit was to again check his eyes and also to hook him up to his IL-2 (which does similar things to his body that the injections do). They rotate the injections with the IL-2 to try and target different aspects of his immune system) which helps the antibody do it’s work (from what I understand…). So he is now on a constant IV for the next 4 days. His labs today were good again which is always nice to see. His eyes were the focus of the visit again thought- a least 5 people looked at them and finally they called in the attending to come and peak. He isn’t our normal oncologist but he has seen Collin now during two of his antibody stays and he is well versed in antibody. He is new to the hospital and super nice and is a good sport where Collin and his craziness is concerned. The first time he met Collin he even sat down and played legos with him which is unreal for an attending oncologist to take that kind of time to sit and play legos. Pretty cool! Anyway, he looked at his eyes and cleared him to go to full antibody dosage this next round. He said that since his eyes are stable and improving that we can proceed. Which is a double edged sword. Good because if we are going to do this treatment I’d like to see him get the full dose, but also if you remember this round the last time, it was very scary. This round is when he had issues with fluid in his lungs, swelling, needed oxygen and also the round the messed up his eyes. So I will be doing a lot of praying and holding my breath again and hope that you will all pray a lot as well. 🙂
Sunday we are admitted and will stay for sure until Friday but maybe longer than that- as last time he needed time to recover from this round and we needed additional nights for him to be observed and cared for. The rest of the week we will just be spending time together.
I just have to share a few side notes tonight- first is that I thoroughly enjoy spending time with all of my boys. Yes there are moments I want to rip my hair out, but there are so many moments of pure joy that I am so thankful for. This journey almost forces you to appreciate things even more. Simple things, mundane things, but wonderful blissful things. I love watching Coop and Collin interact together. How close they have become, how much they rely on each other. How much Coop adores his older brother and wants to always be with him. It’s also so wonderful to see Lukey developing. I missed SO much of Lukey when he was a baby and so it is marvelous seeing him babble and laugh (he’s SUCH a good laughter- you can’t help but laugh with him- he even snorts!) He is also starting to walk- although I know he could totally do it now if he wanted, he just doesn’t care and just decides to sit down- not because he falls, but because he just wants to. He is also the biggest love bug. For example, today he just crawled right over to me when I was sitting on the floor and put his arms out to me with a big smile. I picked him up and he laid his head down on my shoulder and just snuggled. Then picked his head up, smiled and went about his play. This was not a one time occasion, he always does this. Today when he did that I nearly sobbed on the floor- it was all I could do not to weep all over him from pure happiness and joy. I know if you were to ask my boys if I cry they’d laugh and probably tell you I’m nuts- and yes many times it’s tears of sadness or frustration, but SO many times it is tears of happiness, thankfulness, and joy. I am so blessed and thankful for these boys and these moments that God has so graciously provided us.
On a final note, this week Collin and I were reading his picture Bible (one of his favorite books). Sometimes he asks for specific stories but many times he just looks while I flip through and finds one with good pictures. The other night he found the story about the blind beggar. The way the story was written was so simple, but written in such a way that I have to share it because it so perfectly communicates my thoughts on this entire cancer journey we’ve been on thus far… it may not be the most accurate portrayal of the Bible since it is the incredibly basic kids version, but bear with me. There have been many times in the journey that I have wondered what I have done that Collin has this. Wondered if there was something I could have done different and blamed myself for his cancer, but so often I’ve been reminded of the love of God…
” Jesus and his disciples saw a blind beggar. He had been blind since he was born. The disciples asked Jesus, “Teacher, did this man sin? Or did his parents” Is that why he is blind?” “No one sinned,” said Jesus. “This happened so that God’s work could be shown in his life.” Then Jesus spit on the ground and made mud out of it with his hands. He gently spread the mud on the blind man’s eyes. The Jesus told the man “Go to the Pool of Siloam and wash off the mud.” As soon as the mud was washed off, the man could see! Everyone was amazed. They wanted to find out more about Jesus. John 9: 1-12. I nearly cried when reading this story and sat and explained to Collin that this is what I believed about his cancer. That God allowed this to happen so that God’s work could be shown in his life and that everyone would be amazed and want to find out more about Jesus. This has been a prayer of mine since this first started and it was so cool to see it written out so clearly like I had written it myself. I just had to share that as it is something that spoke so loudly to me. I do pray that this entire experience has shown the power of God to everyone, because I can say with surety that it has shown it to me in ways I never dreamed possible.
Thankful for…
* A God who sees what we cannot see, Who knows the big picture and works all things together for good. They may not always seem good and they may hurt and they may try every ounce of our faith, but they work together for good.
* A God who allowed His Son to die for the sins of the world- He spared not His own Son, but seeks to help mine. That thought is unimaginable to me.
* Time with family- being able to be together after so much time apart. Seeing and hearing the laughter of happy children that craved time together.
* Improvement with Collin’s numbers and his eyes and the ability to go back up on his antibody therapy.
* The help of so many with the care packages. They will be so nice for the families to have!
* The countless prayers that have gone up on Collin’s and our family’s behalf and the prayers that are to come.
* Our 3 wonderful precious boys that God has given us.
* Browyn being able to go home (and eating a bit). WOO HOO!
Please pray…
* For the Sommer family (Sam’s family). Although his pain has ceased theirs is fresh and unrelenting.
* For Collin’s upcoming treatment- that he would not have any further eye issues and that he would not have major issues such as fluid in his lungs.
* That Collin’s health would continue to be good and that the divine shield around him would continue to hold strong.
* For Collin to be able to continue to gain weight and strength. That he would even have the desire to eat this week in the hospital so that we will not be set back again because of therapy.
* That Tom and I would have the strength to get through all of these things that weigh on us daily. That we would have patience even when we feel like there isn’t any, that we would have energy, even when we’re tired, and that we can love on these kids like crazy despite our lack of these things due to the present circumstances.
* 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 and not be driven mad by the things that seek to devour me!
* 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 that her new cells would help her. That she would continue to have a divine shield to protect her and for her to heal completely without further complications- for the Leukemia to NEVER return.
* 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.
Print Friendly, PDF & Email


Update 12/30/13 — 4 Comments

  1. Thanks for sharing again,Amanda! Glad to hear of happy times over the holidays and better lab results.Continue to pray all will go well as you face the next step in the journey!

  2. What a great Christmas present. We have all been praying and wondering how everything is going. Thanks

  3. Amanda,Tom+the boys, thank you for your updates during 2013. Be assured of continued prayer for you all during 2014!! God bless. Love from The Russell’s (n.ireland)

  4. Praise be to the Lord, for each thing HE sends each day. Rejoicing with you for great time with your family over Christmas. Great is HIS faithfulness; may HE be glorified!!

    Yes, it is the little things that we take for granted until a bump in the
    journey of life that we can truly appreciate the Lord’s mercies and His

    Praying for Collin’s next treatment and all of you.
    Blessings, Dave & Ruth Ferris (Nebraska)