Time
I have to take a deep breath as I begin this as it’s taken me days to finally sit and write. Things are not good. Jake’s disease is growing stronger, much bigger. He’s in good form but there is just more and more with each scan, each biopsy. Jake’s scans have come back pretty bad and we’re in a really hard place. His liver spots are indeed bigger and there are more. And worse, the one tiny spot in the lung from six weeks ago has grown to more than we want to count. His platelets are still too low for chemo and the reason they don’t usually go forward with chemo when low is because it can bring on tAML but we are doing some chemo anyway. There’s more to it but that’s enough to deal with. Time is the ultimate goal for a cancer patient, but sometimes time can also be the enemy and because of how quickly things have changed in just six weeks, we don’t have time to get him to another hospital for a different trial right now – that takes time to get everything in order – to the tune of a couple of weeks to a month with all the red ta
pe that goes along with these trials and moving his care. We will do two rounds of this and in the meantime we’ll see if another trial will even consider him. We’re still praying with everything we have that something comes of this. This chemo isn’t as strong as the others he’s had so we don’t even know if it will be worth what we are putting him through but if you look at him – he’s doing so well, so how can we not? BUT he’s having these throat clearings, kind of like a cough but not deep, it’s the cancer in his lungs. He’s pale and he has dark circles under his eyes at times. There are signs everywhere that it’s growing and he’s just fighting and fighting. And we are too – we will NOT STOP! He really looks so good, it’s just unbelievable. He’s been granted a Make A Wish trip to Disney and they called earlier in the week to say we would go at the end of April. This morning they called to say it h
as been moved up to next Wednesday. It’s a bittersweet adventure but one that our family is looking forward to and we are so thankful that he’s getting to do this. We’ve been inpatient since Friday night and are being discharged later tonight. He’s done well this week as Kate was with us for a few days and we had some welcomed visitors. He hasn’t had these two chemos before… Temodar/Irinotecan (or as Nurse Stacy put it “I run to the can”). It’s supposed to bring on massive diarrhea. So far, none, but they say it’s coming and it can be pretty severe and dehydrating. So we have to pray that it is milder than usual so Jake can get on that plane Wedne
sday morning. He’s starting to exhibit that “chemo brain” behavior… the agitation and fussiness of the drugs in his system. Hopefully a little time in the magical world of Disney will offer some relief. I’ve said this so many times but it’s true… we are, where we are, because you continue to keep our family lifted in prayer. For all the blows Jake continues to take, he is laughing and playing, hanging upside down, and telling fart jokes because that’s what five year old little boys do. His favorite thing this week has been an Olympic skating vid
eo that I’ll share with you so that you can enjoy it just as much as we have (wink!). He’s watched it over and over and OVER, and each time he laughs like it’s the first time he’s ever seen it. You’ve probably seen it posted all over Facebook, but if not, you’ll get a little glimpse of what our hospital room TV watching has become. Farts and more farts! http://www.youtube.com/watch?v=zz_TBklZ4uQTrackback from your site.
Comments (23)
Juli
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Mardon,
You may not remember me, but I met you in Mops a few years ago. I am devastated to learn of this unfair journey with Jacob. My prayers for a miracle are with you. I will also pray for your family’s unending strength!
Juli Gesino
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Ronnie Glaug
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I am completely in awe at the strength of your family. My heart aches to hear the progression of Jake’s journey. Sending prayers for peace and love, continued strength to keep fighting.
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Bridget Garza
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My heart goes out to your entire family , God bless Jacob
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Valerie Price
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As I read your post, I remembered our Make a wish to Disney with Andrew. We had a wonderful time on our bittersweet trip. Enjoy and don’t think about what the future may hold. If Jake is like our 3 year old Andrew, he had no fear and ride the scariest rides. We even had to stuff his shoes with toilet paper to get him on some of the big boy rides. We lost Andrew shortly after our trip, but are so thankful for that wonderful week without treatments. It was a magical memory.
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Ryan Clement
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My Prayers go out to Jacob & your family!!! Stacie Drew sent me this link. She knows that we help families with special needs in the theme parks. It would be an honor to help you while in Disney next week!!! Please feel free to contact me. Stacie has my info. I can help take the stress of such a big trip away that can be very overwhelming, especially if you never been in Disney before.
Remember, God will always be with you!!!!
Sincerely,
Ryan Clement
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Michael McCowen
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It was so nice to meet you both. you know Jake is in our thoughts and prayers everyday
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Susanne Nelson
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Hugs and prayers for your family and Jake! May God bless you and keep you I read a book this week by a woman who volunteers in children’s cancer hospitals. She said she once asked a five year old cancer patient why she thought she had cancer, and the little girl said. “God puts us on earth to learn things. God made me pretty perfect so I don’t have much to learn; and I don’t think I will have to stay here very long. My parents have a lot to learn though so they will have to stay here a while longer.” Children are amazing. Praying that the chemo will heal Jake. Xoxoxo
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Debbie
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Have been following your story in Corpus Christi. Praying for your family. God bless you all.
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Russell knapp
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The story above is enough to bring any grown man to tears. I am sure you and your family knows anyone who has heard of Jacob’s fight has been moved by this. Of course everyone is hoping and praying that the road to recovery arrives and stays for good! In regards to your Disney trip I have a link I would like you to look at if you have not already (http://tipsforfamilytrips.com/florida/disney-world-make-a-wish/). Many years ago when I used to live in Orlando I did lots of volunteer work at Give Kids the World (which is where you will be most likely staying). I don’t want to spoil too many of the surprises but this place is the best of the best when it comes to Disney. It’s like a Toon Town sort of place (You’ll see when you get there). Even if Jake is not up to going to the park they have plenty of fun, fun, fun activities at the resort as well. The only advice I am going to give you is get your camera ready because Jake and the whole family is going to have tons of smiles and laughter that you will want to capture!. Love you guys!
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Tracie
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Have been following Jacob for a while now from Ireland. So sorry to hear this today from your latest post and holding out all hope for you all.
Jacob might enjoy this:
http://www.youtube.com/watch?v=QpcoOTXdQbk
I hope he does.
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colm
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i’m also from Ireland, My prays and thoughts are with you at this time,
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Toni Timura
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As I read your story my heart breaks for you and family; I can’t begin to imagine your pain. May God continue to be with your family and your strong brave little boy.
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Kay Court
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Praying for you and your son, to relax into God’s arms of love and try to go with the flow, as difficult as that must be. Our friend has beat stage 4 melanoma for 2 years through the Budwig natural diet, vitamins, and healthy water. If interested, google “Budwig Diet”. Their protocol is free. Our friend came to MD Anderson for second opinion, They said just keep doing what you are doing, we have nothing to offer. And tell Jake I loved that YouTube video too. Our kids are grown but they still love fart jokes.
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Jennifer
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Lifting your family and precious Jake in prayer.
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Robyn
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Speechless…praying for diving intervention. I continue to lift all of you up daily. and feel helpless although I know that our Father in Heaven hears our prayers. Sending you prayers for peace, optimism, and encouragement. Keep on fighting — it’s in His hands and He can move mountains.
God Bless!
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Robyn
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* divine, not diving. Crazy autocorrect
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Kristy Stavinoha
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Always praying forJake, you and your family!! I know God has you in his hands! I just loved that video!! I needed that laugh after reading your post but I will not stop praying for complete healing for Jake.
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Jean Smith
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Lord, in Your mercy hear our prayers.
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Patti
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Friend of Erin Fujimoto and praying and hoping all the time. I don’t know you all but have come to know Jake and your family through your updates and website. What an amazing and strong family you are. Hang strong Jake and kick it once and for all. Hope you have a blast in Disney.
Hugs! Patti Chronister
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Ellen Vaughan
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We are praying for little Jake and the family. Hugs to you all.
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Stacy Barry
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We are praying so hard for your little warrior. Hugs and prayers and blessing to your whole sweet family.
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Adrienne McPherson
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Praying for peace and strength for you and your husband and Jake. God bless you all.
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Susan
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Thanks for sharing the video. I laughed until I cried. Have you met the farting Pug dogs (exclusive at Toys R Us)? My grandson and nephews (ages 5, 6, & 7) LOVE them…of course, they are farting, why wouldn’t they???
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