Category: Mom’s Blog

Here we are again… TCH for chemo… Round 4. Jake’s been off a bit this stay.

Last night was a long one as Jake spiked fever all night but as the sun came up, so did a new day, new hope and NO fever. My scripture reading today said… “Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139:23-24 Anxious thoughts? Who me? After a night of little sleep and much worry, He gave me just what I needed to be reminded that He brings us “hope” and he can change our hearts and all that is negative and worrisome within us with just a turn of the corner, a prayer, or a new day. Thank God for new days! Now, if Jake will just stay fever free so we can stay on target with his chemo and discharge date. They’ve temporarily stopped his chemo for a few hours to give antibiotics. Can’t run them both in the same lines through his port so it’s one or the other. Just in case, he’s hedging toward and infection, the antibiotics win out. They are running cultures to see what spiked it but any number of things, from the chemo itself to a UTI can do this. Especially since one of the chemo drugs he’s on is not kind to the bladder. This stay has been bumpy from the start… not sure if it was the nice long stay we had at home that had us not ready to return or the fact that he has been poked and accessed so much in the past month that he’s just had it. His port access during admission took 4 nurses, me and Daddy. In the end, they wrapped him in blankets to “taco” him so he couldn’t hurt himself or any of us. It was HORRIBLE and traumatic and everybody on the floor heard it or heard about it. After they unwrapped him, he came out swinging, caught me in the cheek, then he crumbled and cried for almost an hour, only to sleep it off for about two hours.

The fact that they know to do these things says that this is not unusual. These kids hit their breaking points just like we would but their age and inability to communicate makes it so much harder for them. Our Child Life Specialist, Saraben, is absolutely wonderful with Jake and he is so comfortable with her. She is so very good at what she does, is on the mark everytime, and so gentle and calm with him. She spent a good amount of time with him after he woke up and then with me to talk and reassure me that this is normal for this stage of the game and it will probably get worse before it gets better, especially as we come up on his Stem Cell Transplant. She did say that he will have a PIC line put in for transplant, in addition to his chest port, so for a good month and a half of that time, no pokes – thank goodness! He did get to put his own meds into his line yesterday and that was a highlight and an opportunity to give a little control back to him. Thankfully, Kate and Emma are here for the weekend to keep him company. Saraben also gave the girls window markers and they’ve had the best time drawing all over the windows and Jake’s door. Even Jake made a big smiley face on the window. When we leave this room, the cleaning crew is going to love us! AND… there is recording studio here where patients and siblings can record music so the girls got a taste of what it’s like to go into a music studio and had a blast recording a song for Jake. He even has a little cameo at the end. They’ve played it over and over, and are looking forward to recording more songs. TCH has their own TV/music station called Radio Lollipop, where patients can request their favorite music or ask to have their own song played on the station… wonderful little perks of how much TCH loves their kiddos. (I will try to get a link up to showcase our rising stars!) Our kids go back to school next week and I’m NOT ready. In fact, Jake and I won’t be home yet so Daddy gets to help them start the new year, back-to-school, routine. It was nice to have some time with all of us home together as it seems like the past few months are a blur and we really needed some time together to just hang out and do nothing…. praises for that! As for now, Jake, Kate and Emma are all sleeping, I have my coffee and my devotion, it’s quiet and dark, and there is silence and peace. I’ll update sooner this time but for now, please pray with us that Jake’s fever is gone and that the next couple of days are better for him, and praise God for this new day. Hoping you find rest today and big things to praise and smile about. As Emma reminded me, it takes 43 muscles to frown and only 17 to SMILE! =D

It’s been a wonderful Christmastime! We were home… still are! And let me tell you, the days leading up were filled with more than a little worry that we might have a Thanksgiving repeat, especially with Jake’s stem cell collection so close to Christmas day. There were tons of temperature checks to make sure we were OK and no one was allowed to go anywhere too germy. In hindsight, it was a little over-kill but keeping Jake from being hospitalized unnecessarily, was priority. We’ve had some fun days and lots of movie nights, even had a day that wasn’t too cold where we could get outside and play…that was the BEST! Jake actually rode his bike and that hasn’t happened in months. There was a point a few months ago when his legs were hurting so badly and they were so weak that he couldn’t even make the pedals go around. Yesterday he pedaled and pedaled! We were supposed to be admitted for Round 4 last Thursday but Jake didn’t make counts so now we are scheduled for this Thursday, Jan 3rd. The good news is that we will spend New Year’s home! Two holidays in a row! Woo hoo, getting the sparklers!!! We’ll head in for chemo this week and hope to be back home the day before the kids go back to school. At Jake’s appointment last Thursday we met with his Oncology team to go over the next couple of months. Henry had some hard questions (we weren’t sure we wanted the answers but they needed asking) and Dr. Foster was very encouraging, still. She feels that he appears to be responding to his therapies because of the way his counts recover each time. Sometimes they’ve been a bit delayed but she reminded us, each patient is different, and there is no exact time of recovery, only estimates. She reinforced thathis counts do recover to where they need them each time to begin each round of chemo – that is key. She and Dr. Zage are still optimistic about what they feel will be the outcome. We are so thankful for their attitudes, it’s so needed some days. There were a couple of changes to his road map (or treatment plan) but we are still moving along. The biggest change is that Jake will now have six rounds of chemo in this cycle, not five. And it looks like we could be ready for Stem Cell Transplant in April rather than this summer. We will have his MIBG after his counts recover from this chemo. This is the scan that lights up everywhere there is cancer. We hope to see marked improvement in the bones and a big reduction in the abdominal mass and liver. From there our surgeon will plan the surgery to remove that mass. If he feels that Jake’s tumor still needs a little more zapping, we’ll do chemo 5 before the surgery. Otherwise we’ll finish chemo 5 & 6 after he re-cooperates from surgery and then we’ll head into transplant; then radiation and accutane therapies. There’s still so much road to travel. Also, his hearing test did indicate some hearing loss due to the chemo so they will monitor that closely. A lot of information, right??? We have a few family and friends who are into the medical side, so that was for you! (The picture of Jakie above is him waiting to surprise his Docs and jump out with a big “BOO!”) For now, we plan to enjoy the next few days… and for Houston, we’re having a bit of a cold spell… not like many of you with snow, but it’s our version of brrrrrrr! We’re a different breed here, ya know? Our humidity and HOT summers make us wimpy. We’re not used to cold weather so we get out our gloves and scarves and big coats. We make a scene of it. For the Hickford crew, we’re mostly homebound with movie nights and popcorn, AND crazy kids making for

some stir crazy moments. Unfortunately the cold weather has put our photo shoot on hold with Kelly and the Magic Hour Foundation, I just can’t get Jake out for too long as he’s still coughing from the RSV, so as soon as it happens, we will post them – we are so looking forward to this. With everything going on the past few months my partner, Shana, has taken our Beachbody Faith & Fitness girls by the reigns and I am so thankful that I could come and go so easily and grateful to our girls who are such powerful prayer warriors. I am so blessed to be part of such a great group of leaders and workout girls. Henry hasn’t been riding as much and it looks like he will sit out the MS150 this year but he’s playing soccer and we’re doing what we can to keep the kids in their activities as best as possible. All in all, we’re in good shape, saying goodbye to 2012… and PRYAING for a BIG MIRACLE in 2013. Keep your eyes open… TRUTH 365 kicks into full gear on Jan 1st. Please pray with us that it brings awareness, that it brings change, that it brings a call to action by those that can, and that it brings future cures to so many little ones! We ask your continued prayers for courage and healing for Jake and all of the children that fight with all they have, and please pray especially for those families whose children walked through heavens door this year. Then the little children were brought to Jesus for him to place his hands on them and pray for them… Jesus said, “let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” Matthew 19:13-14 May God Bless You in 2013!

Great 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 us! 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 must do without you. The constant meals, offers to 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 our 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