Author: Mardon Hickford

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We Celebrate!

20121222_112336BGreat NEWS….. The official numbers are in and we got 13 MILLION!!!!!!!! Jake’s stem cell harvest was a success. The goal was 8 million CD34 cells. The catheters that they put in were not pretty. He did well for the surgery and with the catheter in but taking it out was not as easy as they said. We lived through it but there were stitches that held them in place and one of them didn’t want to come loose – and taking suchers out of an area that close to a little man’s parts is tricky, and was really scary for him. Plus, Jake has an allergy to tape. He must use cloth tape and it’s noted in his file but someone didn’t pay attention so his little area was burnt and beginning to blister… not fun when it came time to remove the tape. It was agony, he is the bravest little boy in the whole world and we are so happy that the first leg of the stem cell process is behind 20121222_112923bus! We have a whole week to be home… no shots, no accesses, no doctor visits, just be HOME! So today we celebrate… with a visit from Santa Clause. You should have heard the shrill when Jake saw Santa at our door. I must thank my very best friend Tracy for arranging this special visit. She made a little boy so very happy… and his brothers, sisters, mom and dad too. How magical to have St. Nick in our home. Sadly, Meghan’s family (our oldest) couldn’t join us for our little shin-dig, due to a little respiratory gunk running through their household but we’re hoping they will be on the mend by Christmas day. We also received the most amazing load of gifts through our church for our family’s Christmas. I will never be able to say thank you enough for the generous outpouring of love from so many friends. We are so grateful to our church family for all they continue to do for us. There is no way we could manage all that we 20121222_112714bmust do without you. The constant meals, offers to20121222_114336b help with the kids, gifts, donations and prayers have kept our heads above water when we have felt so close to going under. THANK YOU! And I must say a very special thank you to my dear friends Debbie, Jean, Sarah, Michelle, and Tracy for organizing our daily lives, for being involved, and for putting so much heart and time into being sure our family has a nice Christmas. All my love, hugs and kisses go to these amazing ladies and so many more that go un-named, who shower us with their help, their encouragement, and their never-ending love. They have blessed our family in more ways than I can ever write about and we are so, so thankful. From the bottom of my heart… thank you to EVERY ONE who played a part in 20121222_114530Cour Christmas! It is such a relief and the most touching and beautiful blessing for our family. And to all of you who continue to follow Jake’s journey, we are so blessed for your daily thoughts and prayers. May the beauty of the season fill your hearts with joy and may Jesus fill you with peace as you worship Him this Christmas time. “After they had heard the king, they went on their way, and the star they had seen in the east went ahead of them until it stopped over the place where the child was. When they saw the star, they were overjoyed. On coming into the house, they saw him with his mother Mary, and they bowed down and

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worshiped him. Then they opened their treasures and presented him with gifts…” Matthew 2:9-12

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Rudolph

When we can, our preferred drive into the med-center includes a drive through one of my fave parts of town… the Rice area. Driving down the tree lined street with the sunlight streaming through the trees is just beautiful. Seeing people walk and jog and push strollers on

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the wide sidewalk along Rice University gives such a sense of commuity and belonging, even though it isn’t our neck of the woods. Although Henry likes to say he grew up in CA, he’s been in Houston since he was 10 – he’s more Houstonian than Californian. But I’m a Houstonian thru and thru… 3rd generation in fact! That makes our kids 4th generation and total Texasn! This is our city and although we’ve thought of moving from time to time, this is home. You look up and see these huge medical buildings and you know we live in a remarkable city. SO much diversity, so much opportunity, so much busyness on one side of the street and then everyday life, shopping, college students, mommy’s pushing strollers, people walking from home to work to play, right across the street. Driving down University Drive, there is a flower shop that always has the BEST stuff. As we’ve been in and out of the med-center so many times this week, we noticed these big, beautiful, reindeer made of sticks and twigs… they caught my attention and kind of remind me a little of some deer my mom had in our front landscape when we were growing up. At the beginning of the week, the front of the store’s yard was full of them… different sizes, lots and lots of them, with big red bows around their necks. But as the week has quickly gone by… so have the deer. And I wanted one!! BADLY! And once Jake saw them, he agreed. Of course, there is a story behind these deer I grew up with (I’ll save that one for another day) and once I pointed them out to Henry, he said “Oh no, we’re not doing the deer thing.” But I still wanted one and they were dwindling. So as we were heading out of the med-center the other day and back down our lovely, tree lined street, I sat pleading and he began to cave (big grins) . He only had to mention that maybe we’d stop tomorrow if they’re still there to make mommy happy. You know us women… maybe equates to YES! I’m confident that he expeted them to be gone. HA! No such luck becuase as we drove by, there were four left, and the begging commenced… Jake and Kate joined in too. What’s a Daddy to do??? Please, please, please, pretty please, he’s so pretty. Bet you can guess what’s now found a new home in our front yard? Yep and Yay! A reindeer stands so regal and lovely in our landscape.. Jake thinks the deer is “weeley, weeley cool”. AND, of course he has named him Rudolph (because what else does a four year old name a reindeer????). So today we introduce you to Rudolph… hope you like him… we love our newest member to the Hickford Zoo! Hope Gunner doesn’t get too jealous… =)

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Tomorrow

Looks like tomorrow is “the day”. Jake will go into surgery first thing in the morning to place the catheter for his Stem Cell Harvest and as soon as he is out of recovery, they will hook him up to the machines and begin.  They’ve been tracking his counts, looking for special cells called CD34 cells.  These are the cells they will “harvest” so they can put them back into his body in a couple of months in order to rebuild his immune system for the transplant process.  He’s been slow to build these cells and they’ve been tracking them for the past week so they can catch them when they hit a certain level as there is a very small window that the cells hit their highest level, then they begin to drop.  They feel that Wednesday and Thursday will be “the window” for his best shot to capture as many of these cells as they can – they need millions. He’s ready to go.  His port is already accessed – it consists of a a 3/4″ needle in his chest and 6″ tube hanging and taped carefully.  Our prayer is that everything goes smoothly, that there are no complications, that they can get as many cells as possible in the shortest amount of time.  If they could get them all in one day – that would be our prayer. Most kids take two days, some longer.  They will hook him up until they get what they need.  They try to get enough for the first Stem Cell Transplant, plus extra for a future transplant procedure, just in case.  Unfortunately the relapse rate for Jake’s cancer is high and this is a precaution that they take… sadly, many more children than I’d like to say relapse. This reminds me… If you haven’t been on here in a couple of days, I ask you to scroll down and read Truth 365, then, share it… please.  It makes me think of something else… the fact we’ve been prepping Jake for this harvest has meant daily injections, as you know. In fact, because his cells haven’t mobilized in the amount of time they expected, we’ve had to fill extra days of his injection prescriptions (the shots continue until the harvest is complete).  I want to give you some information, not to make you feel uncomfortable or sorry for our situation but to bring more awareness… the shots we give him come in teeny, tiny vials, you can see in the photo.  Yesterday, we had to fill 4 extra vials to the tune of an additional $1906 on top of the nine vials he’s already gone through this past week and a half.  Do you see the itty, bitty vial in the picture?  They are tiny, 1ml vials BUT we only give him .5ml – then we must throw the rest out… wasted.  What in the world can be in a vial so small to cost that much money?!!! (In dollars, that’s almost $500 per vial!)  It’s infuriating and it’s wrong! Things MUST change!  The photo captures how our mornings start… our prep area for his shot… and in the background you can see the pharmacy of Jake’s meds.  It’s crazy!  Again, I tell you this for awareness, so that you might fight for these children, for these families who must find ways to make sure their children have what they need to battle their disease.  Do you think that if childhood cancer research had more than 4% to work with, there might be better or less expensive drugs for these families?  I do.  Please, please, visit  www.thetruth365.com to see how easy it is to help.  I will try not to harp in every post, I just want everyone to know that there is hope, we just have to “DO”………. for scripture says we are one body in Christ, we all have different parts, different jobs, but we work together to glorify God.

 

On a lighter note… the Daughters of the King visited our home last night to Christmas carol.  What a treat!  They were beautiful and joyful and what a gift it was to have them sing for us and then bless us with a special prayer.  I had to hug each of them… they were just precious young ladies.  We have been blessed by so many generous offerings of time and love, friends that want to show their support for our family… we are so thankful!  These are moments and memories that give us hope and courage each time we walk into TCH for a new procedure or appointment.  THANK YOU, THANK YOU!!!  I wish I could give every one of you a big, big hug.  Please know that we praise God each night for you and all of the help and comfort you bring to our family… we love you and send our deepest, most heartfelt appreciation for your prayers… we feel you!