July 4th at HOME!

  It’s almost July 4th and it looks like we will actually be home for this holiday!!!!!  The kids are so excited.  They want FIREWORKS. That’s all they’ve talked about.  When they took labs yesterday, I was hoping Jake’s counts were on the rise so we could do something fun and non-isolated for the 4th but no luck, crowds or Kemah won’t be part of our party plans this 4th.  I think of where we were a year ago and where we are now and there are lots of different emotions. I remember vividly how much fun we had at Kemah last summer but then I also remember that as the night wore on Jake wanted to be held – his legs hurt. In hindsight those were little signs starting.   Then I think of how lucky we are to be right here, this year, WITH HIM, and it’s all OK – we’ll have sparklers and be thrilled.  I’ll be sure to get some pics!  It’s been a little while since I posted, just busy and sometimes my heart has to be in the right place.  It hasn’t been.  There has been a lot of loss and little friends just not doing well. To sit and write, means I have to try and process – for my mind to start circling like that there must be sense to be made, and there just isn’t any.  Another special little friend of Jake’s gained her angel wings this past week and it just hits so close to home.  Mackenzie, Zie, spent many, many days in the 9th floor playroom with Jake.  She was sweetly shy with this girly smile, always at the art table and just precious.  There are some other little friends that are struggling right now and we are praying hard for them, watching, waiting for them get stronger, to feel better, to play again.  It can weigh heavy on the soul.  For some good news, Jake’s friend Patrick is back from Dallas and he sailed thru MIBG with flying colors.  Seeing him and speaking to his parents has eased my mind considerably.  They shared pictures and it’s like something out of a sci-fi movie. I have to say that seeing Patrick with my own eyes was a huge help.  He looks GOOD, really, really good!  We are praying that his scans look even better!  Some fun news is that Baby Bull visited the infusion room yesterday and Jake was SO EXCITED!  He laced up the gloves and held the belt – he was all smiles!  Now for a day in the life for you… last week while in clinic, Jake left his blankie, aka blankedy. We were almost home, in the HOV actually, when he discovered this fact and fell apart.  AGH! There is NO WHERE to go in the HOV, except straight… further and further from blankedy.  I knew I had to go back.  What if the cleaning crew found it and put it somewhere? Or worse, what if they put it in the laundry?  In clinic, we use fresh sheets and blankets to cover the sofas and infusion recliners – it’s a “germ thing”, as to give extra protection for the kids.  What if they accidently threw it in with the sheets – we would NEVER see it again!  So, we drove back, in traffic (NO HOV going back into town).  We didn’t leave the infusion room till 5:30, so getting back into the med-center was not quick. The whole time I was praying!!  Mostly that we would find it but also that we could even get up to the 14 floor.  The Clinic side of TCH shuts the elevators down at 7pm. Even if it was where he left it, we might not be able to get to it.  We got there and started our “hunt” for an officer to get us back upstairs and who should come walking around the corner but one of our front desk angels that sign us in every day.  Man, were we happy to see her!  God wink!  She “badged” us up and low and behold it was right where he stashed it… in the microwave of the little play kitchen.  WHEW!  RELIEF!  Momma was almost in tears and Jake was ecstatic!  Last week was VBS for the kids.  Kate and Emma were able to be first year Crew Leaders and loved it!  It was hard for Jake to watch them leave each morning – he knew what he was missing. But we snuck up the back stairs at closing ceremonies one afternoon so he could see from the balcony – it made his week!!!  Our church puts on an amazing VBS program and this year they honored Jake and Grant (another one of our little friends and church families who is fighting Leukemia). We are so blessed by our church family! As for Jake and treatment, we are waiting for him to recover from the past round of chemo so we can start this eighth round.  This next chemotherapy will be a week long and the same drugs as last time, Topotecan and Cytoxen. These are considered “mop up” drugs and weren’t part of his original road map but are being used because he’s being categorized as “refractory” since his disease has shown some resistance to the usual NB treatment. We are in the planning stages but it does seem that Jake will not head into Stem Cell next. The doctors feel that MIBG will be best for him first. With everything we are learning and the severity of Stem Cell on the body and immune system, we are listening.  We are comfortable with this decision and now we have to decide where.  So we are praying, thinking, assessing, stressing, studying, PRAYING!  I know this is long and will close it up soon… I haven’t placed the shirt order yet but plan to finalize it soon.  If you are interested please e-mail at mardon@mardonhickford.com or FB with sizes and quantity (you can check out the post below for a picture of them).  AND I just want to THANK YOU for all of the meals, the thoughts and cards, and the ongoing help. I am SO BEHIND in thank you’s and I may never catch up. There are so many to thank and you all keep us lifted and moving forward. I just can’t imagine where we’d be without you.  Please know that we are so grateful for every word of encouragement, every meal that fills our tummies, the meals are SUCH a help!  We are grateful for all of your love and prayers!  I was telling a friend earlier this week that I can’t imagine what it would be like without all of the prayers that continue to go up for us on a daily basis.  We have joy… and HOPE!  It’s because God is listening and he gives us his little winks of love each day through YOU!  We love and pray for you too!  And we wish you a happy, safe and blessed 4th of July!