Update 6/11/13

So I haven’t posted in a few days and that is because for the most part I have been having a great time hanging out with my boys. Friday we were able to leave the hospital a lot earlier than I expected. They were ready to release us at 10 it took a bit though because Chrissy and Alex came to pick us up and we had to load the vehicle and get Spongebob themed balloons for their party. I can tell you that even though it took me a while to load the car, it took Collin no time to evacuate the room and run off the floor. He had absolutely no interest in staying. I haven’t seen him this ready and excited to leave since one of his first chemo treatments, in fact I would dare say that he was the most excited this time. Because he actually felt good when we were leaving and because he had been in so long this stay. I think he smiled the whole way home- although he was surrounded by huge balloons so who can be sad then! When we got home Collin wanted to do nothing but play outside and he went out back immediately to check out the progress on the swingset. When his dad got home Coop and him got their birthday present from us- two ride-on four wheelers. I should tell you that normally we would not spring for presents like this but our thought was that Collin doesn’t always have a lot of strength to ride his bike and we wanted to get him something he could ride. Plus he has always wanted one since riding them at his cousin’s. We couldn’t just get Collin one because that would have been war and I’m so glad we got two because I have never seen two little boys have so much fun! It took them both a bit but they both caught on so fast- even Coop knows how to steer which really surprises me. (Pictures below!) Friday night we played outside for a long time! Nurse Lacy even got to stop over and see us partially for fun and partially because she needed to show me how to use his IV pump. We had a really great talk and she was happy to see Collin with so much energy- she just kept saying how good he looked. Which I still repeat daily because he just has SO much energy and wants to play all day long. Saturday we celebrated Collin and Coop’s birthday’s and it was a wonderful party. Collin wanted it to be Spongebob themed and he also wanted a pinata. Heather also offered to make his cake and cupcakes and as you’ll see- it was spectacular! I was scared that he was going to be overwhelmed with so many people being there on his first day out and it did take him a bit but after a while he was running around talking to people and playing and it was wonderful. Thank you to everyone who sent cards and packages- Collin really loved reading them at the hospital and opening them- he sure feels loved and cared about as do we. It was so wonderful to hear everyone sing “Happy Birthday” and rejoice in the fact that we can celebrate another birthday with Collin- however, it was a tearful moment for me as well as I prayed that this would not be the last. Collin also asked that his b-day party include roasting marshmallows so that is what we did. Chrissy’s friends stayed Sat. night and I asked the guys to start the fire…. wish I had taped it so you could see- very boy scout…. David was chopping wood into chips for the fire, Alex was tearing up paper and trying to strategically place it and Ian was fanning it with a kid’s snow shovel…. I almost cried because I was laughing so hard. Priceless! They did finally get it going and Collin ate almost two whole smores! Needless to say all the boys slept very well Sat. night. Needless to say getting ready for church on Sunday wasn’t easy since the boys were still pretty beat, but worth it to be able to go as a family which hasn’t happened in months. Monday was a wonderful beautiful day as it was so spectacular outside and that is where we spent almost every hour of the day except for when the boys were taking naps. They rode their 4 wheelers and Collin even gave Coop a ride on his which was so sweet. They pushed cars down the slide of the swingset, shot squirt guns (one that is half the size of Collin and is hard for him to lift when full but he’s been working on it) and played with bubbles. Coop kept walking around the yard excitely saying “bubbles” and smiling. He also tried mowing out entire backyard with his bubble lawn mower. Too bad it doesn’t actually mow! The hard part of the day yesterday was around 7 last night when Coop fell off of the steps leading up to the monkey bars. I was in giving Luke a bath so didn’t see it but he came in crying. So we put him in the shower and were trying to feed him supper and I felt like he wasn’t normal. He was whimpering and saying “boomy” and just wasn’t acting right. So I held him in the chair- I had no sooner sat down to rock him and he threw up all over me. So immediately I felt like I needed to take him in because I was worried about a concussion. So Chrissy and I loaded up fast and drove to children’s. We got there about 9. He screamed for the first 30 minutes we were there because the nurses had to check his vitals and the doctors had to examine him- and he hated it like a typical 2 year old. One of the blessings of going through everything with Collin is that I am used to being at the hospital and I can also talk to Coop about Collin being there. For example, when Coop got his patient bracelet- he kept trying to rip it off and cried a ton- until I told him that was the same bracelet that Collin had and he wanted to call his brother and tell him because he adores his older brother and whatever Collin has and does is “cool” to Coop. They checked him and asked me questions and they decided they wanted to monitor him until 11:15 since that would be 4 hours from his fall. I guess the first 4 hours after a fall is the equivalent of a negative CT scan- which they didn’t want to do unless they had to. So we waited and Coop almost fell asleep and ended up being goofy like he can be so we thought we were in the clear. They came in and discharged us at about 11:30- as we were walking out of one of the double doors- I stopped because I could hear him making a funky noise and I had no sooner stopped to see what was going on and he threw up all over the ER hallway and on me. So we turned back around and headed to our room and at that point they decided to do a CT scan. I think that Chrissy and I pretty much sat in silence that whole time, with the exception of me saying my back hurt because I was trying to hold Coop so he would be comfortable in a bed that wasn’t too comfy…. CT’s as you know are not something I look forward to so I wasn’t thrilled. I was also not thrilled because I know that the kids have to lay really still for them to get a good picture and Coop is NOT famous for holding still. He thankfully fell asleep before we went and for his ride there he was asleep. He woke up right as they were putting him on the CT table and I was praying that he would just lay there because I REALLY didn’t want him sedated after all he’d been through last night. I can only say that God intervened because he laid there long enough and calm enough for them to only have to do it once. We got the results 15 minutes later (which by the way makes me wonder why it takes so long to get Collin’s back….). Thankfully the CT was negative- but after all that happened last night I was very scared to lay him down for bed… when we finally got home at 2:30 a.m. The best part was… Collin kept waking up asking when I was going to be home so he didn’t really go to sleep either until after 3 a.m. Needless to say, with the exception of Luke- everyone in this house was exhausted this morning. However, in spite of our lack of sleep- we had a pretty enjoyable day. Collin was crazy having fun most of the day and Coop was having fun but not quite himself. However, on the positive he wasn’t stumbling like he was dizzy, he didn’t throw up again, his eyes weren’t shifty, and he slept well and woke on his own. (All signs of not having a concussion…). He did however act kind of off all day so we are continuing to watch him. So overall the last few days have been really wonderful and Collin has done really well. We have a really full 4 days in clinic coming up starting on Thursday. Thursday he has an injection to test his kidney function and 3 blood draws, a meeting with the onc. psychologist preparing him for transplant, and a pulmonary function test. Friday he has a VERY full and not so fun day… he has an audiogram to check his hearing, an ultrasound to double check that his fluid is done leaking, a CT scan of his head and neck, a chest x-ray, an echo and EKG and our initial meeting with the transplant doctor. He will not like this day because it has a slew of stuff he doesn’t like to do- as he put it tonight “I have another stupid echo…?” We have the day off on Monday and then Tuesday and Wednesday are the two days mom is least looking forward to…. Tuesday he has an exam with the BMT nurse in the morning and then a bone marrow biopsy and aspirate in the afternoon. On Wednesday he has his MEBG scan and a dental visit which I’m sure will go well… (not). I should explain that the reason I am not looking forward to Tuesday and Wednesday is because those are the days that are focused on his bone marrow and that is the part of his diagnosis that we haven’t seen any info on in months. I am terrified to say the least- especially since Collin has been saying his leg hurts in the same spot where all this started. I keep having to remind myself that he is not limping like he was and all of his previous biopsies and scans have been favorable. However, I am still scared and find myself praying frequently. I just pray that these two scans come back favorable. The MEBG is a huge one because the dye they give him sticks to all of his Neuroblastoma cells so that will be the true indicator of how well this chemo has done. If for some reason it does not come back favorable, there is a chance that his transplant will not happen- so please pray specifically for these two tests. If all goes well, he will probably be admitted for transplant on the week of the 24th. So your prayers for all of this would be GREATLY appreciated as we are heading into another huge and scary part of our treatment process.

Thankful for…
* The incredible days we have had at home enjoying one another’s company. I already feel like we’ve lived a lifetime in the last 5 days and we still have 2 weeks left!
* The smiles on the boy’s faces while they play together and enjoy just being able to be normal kids in a “normal” family setting.
* Being able to enjoy our first sit down meal tonight in months without any nausea or other issues. I should tell you though we had a good laugh tonight because I commented on how nice it was to eat together as a family finally and Collin immediately turned to Chrissy and said “well you’re not family….”. After Chrissy got over the shock, we proceeded to explain to him that she’s still part of our family, just not our immediate family.
* Coops CT being negative- it’s so nice to have a scan be negative.
* A wonderful birthday.
* Chrissy being able to be here to help with the kids and Alex’s willingness to help out wherever needed. He is so wonderful with my kiddos.
* The many incredible people we have in our lives that are supporting, caring for us and praying for us.

Please pray…
* That Coop will continue to do well and that he would have no serious repercussions from his fall.
* That Collin’s upcoming scans and tests will be positive and that it would show very little or even no disease so that we may proceed with transplant. So that we can have some sense of peace that the last 6 months of pain and discomfort were not in vain.
* That Tom and I will be able to focus on God’s promises in light of the upcoming results.
* That Collin would continue to have even more of an appetite and that he we regain some weight and strength during his visit home. (I’ve included a picture of his eating tonight- it was wonderful!)
* That Collin’s bowels would return to normal and that there would be no permanent damage done from all he has had to endure.

* That after treatment is done that the cancer would be entirely gone from his body and that it would never return.
* 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.
* For Lahdarius- a two year old boy that I mentioned earlier in my posts- his family has been told that he has very little time left because his Leukemia was unresponsive to treatment. He is such a special kid and brought smiles and laughs to so many on the floor on hard days- including myself.

p.s. I’ve also included a picture of Collin’s new birthday gift- “Fuzzy” the hamster. Both boys are so excited about him! I also included a picture of what his home IV pump looks like.

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Comments

Update 6/11/13 — 9 Comments

  1. Wow, what a fun birthday! Glad Collin is feeling so well and you are making awesome memories. So sorry to hear about your little Coop. Is there a chiropractor you know / trust that could take a look at him? I continue to pray for your family 🙂

    Jan in Arkansas

  2. Sending Collin and you all continuous prayers, positive thoughts, and love!!!

  3. I just came across your site this morning. My heart wells up with tears for you and your little son, but also with a joy as I see you being sustained by the God of the Universe and walking this journey leaning hard in loving trust on the One who is so much bigger than anything that we could ever be called to face – even cancer!
    I am a fellow traveler for the past couple of years in this cancer journey (breast cancer), and have been utterly amazed at the peace and joy that He gives as He enables us to praise Him in spite of the storm. I’ve been so blessed through this deep trial to know His nearness ‘in the furnace’, as well as see Him open many doors of opportunity both to serve Him and to exalt His name as His child in this ‘land of cancer’ – now familiar to so many.
    I know that He is both “the God of all comfort” and “the God of all grace”. He gives comfort and grace, as promised, for each trial, but I have thanked the Lord SO many times that it is me who is dealing with cancer and not one of my precious family – especially my husband and children, parents or siblings… I cannot imagine going through this with a precious tiny son like you are, my sister! But do I know that our Almighty God must be pouring out the same grace and comfort for your journey as He has in mine – because He has promised! I pray that He wraps you close in His Almighty Arms, enables you to be strong in His strength which is found in His joy, that you feel wrapped in His ‘love that surpasses knowledge’, filled with His peace ‘which transcends all understanding’. May He bring complete healing to your precious son! And may He continue to use you mightily in serving Him and bringing glory to His name, ‘step by step’, through this journey He has called you to travel with Him.

    “Child of My love, fear not the unknown morrow,
    Dread not the new demand life makes of thee;
    Thy ignorance doth hold no cause for sorrow
    Since what thou knowest not is known to Me.

    Thou canst not see today the hidden meaning
    Of My command, but thou the light shalt gain;
    Walk on in faith, upon My promise leaning,
    And as thou goest all shall be made plain.

    One step thou sayest—then go forward boldly,
    One step is far enough for faith to see;
    Take that, and thy next duty shall be told thee,
    For step by step thy Lord is leading thee.

    Stand not in fear, thy adversaries counting,
    Dare every peril, save to disobey;
    Thou shalt march on, all obstacles surmounting,
    For I, the Strong, will open up the way.

    Wherefore go gladly to the task assigned thee;
    Having My promise, needing nothing more
    Than just to know, where’er the future find thee,
    In all thy journeying I go before.” ♥
    —Frank J. Exley

    “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Eph. 3:20-21

    Your sister through His amazing grace, Ruth

  4. As a nurse all of these tests and possible outcomes from treatments are very real to me. Enjoy Collin and your other boys as much as possible. Leave the heavy issues with God, and know that this is a daily act of prayer and reliance on the Lord. Your fears are acknowleged and understandable, even to the Lord Who is OVER All. We are weak but HE is strong.
    Mary Wardell, (Tim McC’s sister) C.F. Assembly