I took Cash to Children's today for a chemo push and to find out if his counts have risen. If his counts remained low, we would have to continue the antibiotics until they were above critical level. Thankfully, his counts were great today, in fact his white blood cells and ANC's were way up! So my nursing duties have been lessened for a while...We are hoping this next week is quiet and if his counts stay up we'll start the 3rd round of chemo next Saturday.
The help we've received over the past few weeks has been incredible. Today, David A (Andre's Carpet Cleaning) came and cleaned our carpets and couch and they look amazing. Many others have stopped by to clean the house, take care of Cash when Wendi and I are working, and much much more. We would not be able to do this without the wonderful help we've received and we are very appreciative!
Wendi and I were digging through pictures of Cash (many courtesy thesnapsisters) from the early days and Randy forwarded me a pic from Crescent Bar - here are a few from when Cash was younger. You'll notice many include big brother Jack either hugging or kissing Cash - they are so great together and we couldn't imagine our lives without either of these boys that God has blessed us with.
We feel tremendously blessed "...And we know that for those who love God all things work together for good, for those who are called according to his purpose." (Romans 8:28). Thank you for your continued prayers and support!
Well after starting out at 7:00 a.m. on Monday morning, hoping for an early day at the hospital, we finally came home at around 6:00 p.m. this evening. It was approximately the same length of stay as our chemo visits (3 days, 2 nights) but everything is ok. Cash's cultures didn't reveal an infection and he didn't have a fever the past two days.
They weren't, however, going to let us go home because his ANC's were still at zero and until they reach 200, he needs to be on IV antibiotics, which meant we'd have to stay probably until Saturday or Sunday...Thankfully, we negotiated a deal so-to-speak - if I received IV training and could get the supplies this afternoon, we could go home, which is precisely what happened.
Here's a picture of our new supplies, including a pump which is exactly like the ones they use in the hospital:
Every 8 hours we have to give him antibiotics with the pump, over the course of 30 minutes (until his counts rise above 200). I didn't care about having the training or extra supplies, we were just ready to get out of there as always. Here's Cash riding in a wagon with his supplies on the way out of the hospital:
Once we got home he perked up and was crawling around, playing as usual. We're looking forward and hoping he stays healthy until next chemo (April 2), in the meantime we have many appointments (every 2 days) for the next while to ensure his counts are rising, enough to start chemo.
Glad to be home and thankful for your continued prayers and support!!!
Cash had a great day today and didn't sprout a fever and blood cultures are negative so we hope to go home tomorrow, satisfying the 48 hour obligation to stay at Children's. The third round of chemo is just around the corner, barring any health setbacks we'll start on April 2.
Unlike Cash at the moment, I need to cut my hair again - Jeremy told mr Gunnar (3) said he was going to keep his hair short like Cash's until he 'gets better' - me too Gunnar!
Well today started at 7:15 with check-in for Cash's BEAR Test. All went well and at 11:00 I picked him up from post-op and we checked into the Hemonc clinic bc we were told he needed platelets and blood (levels were low and his ANC's were zero, which means he has no ability to fight infections). Right after he finished the platelet transfusion, he got a high fever (>103) and they immediately started fluids and antibiotics.
They believe he's fighting an infection and it's standard operating procedure to admit him for at least 48 hours. He's doing well right now and we hope his levels bump so he can ward off what is trying to get in. At the moment I'm at the hospital with him and Wendi has Jack Jr...it's an unexpected visit but fairly common for kids with cancer under this type of chemotherapy.
No laptop this stay so I'm trying to blog on my iPhone...sorry if there are typos. Pray that he recovers quickly and we can go home in a few days...so much for work tomorrow (sorry Zion...:().
My brother and two of his little ones stayed at our house this weekend...yesterday I hinted that it would be great if we all cut our hair to look like Cash. Well this morning we started cutting...It took a bit of persuading for Jack Jr. but he gave in and here's the results:
We think we all look pretty good and Gunnar thinks his hair feels very strange...These haircuts are for you Cash!
We have been home since Monday and it's been a good week. Today Cash spent a little time in the beautiful sunshine to absorb some much-needed Vitamin D. This next Monday Cash has to be put under for an extensive hearing test, called the BEAR Test. They need to establish a baseline on his hearing because one of the chemo's can affect hearing so they will keep a close eye on that. In addition, they are trying to determine if the tumor may be affecting his hearing as well. So for the fourth time he'll have anesthesia, but thankfully this time there's no 'surgery'...phew.
Many have asked if there was a way they could help financially with the medical bills, potential travel expenses, etc. Jodi, Marti, Stephanie, and Laura have been working hard to set up a way if anyone wants to give. They created a website called Caring for Cash and it can be found at http://caringforcash.bbnow.org. I want you to know that God has blessed us tremendously with our medical insurance and to date our expenses have been very minimal. If anyone wants to give, please know that the monies would only be used for medical expenses relating to this Cash's treatment and money left over would given to the Seattle Children's Hospital Uninsured Fund and/or other families that have kids with cancer. We in no way would benefit personally from anyone's generous gifts.
It is our continued prayer that God heals Cash and I am convinced that He (God) will get the glory through this. We have been tremendously uplifted through this difficult process and I know many times since February 8, He has carried us - we could not do this without our trust and faith in God.
Have a blessed weekend everyone and thank you for your support!
Well this time Cash's NG tube lasted one whole day, as opposed to the two hours his first one lasted. It partially came out when Cash threw up this morning and Wendi actually put it back in (woohoo great job honey!). But the second time he threw up it was too far out for her to put it back in...So I took him back to Children's this afternoon and they actually put a different tube in - it's a little thicker and is supposed to stay in a bit better so we're hoping the third time's a charm for this tube.
When we got home there was a package waiting that contained stroppe waffles and books for the kids. Here is Cash already loving his new Dora book and a stroppe waffle (Thanks Alice for the wonderful, homemade stroppe waffles - they are very good!!!):
Thank you as always for your support and prayers and have a blessed rest-of-the-week!!!
Today Cash had a pretty good day - with the NG tube I can put his anti-nausea meds into his stomach, bypassing his gag reflex. It worked three of the four times I tried - once I put too much in too fast and he threw up. We're learning that we have to go slow. Other than that things were good. I did cut my hair, as I promised, this evening - here's a quick picture Wendi snapped with my iPhone:
I didn't have a shaver so I couldn't get it to the skin but it's close. Jack Jr. liked the way it feels and I aim to keep it shaved until we're through this process.
We hope the rest of this week is uneventful and we continue to pray for healing and strength. Thank you for your support and prayers as always!
We got home today at around 5:00 - Cash needed another transfusion so that was an extra 5 hours added to the day but last time we stayed 3 nights and 4 days, this time it was only 2 nights, 3 days. The nights were long as the steroids kept him awake for large parts of the night. That, combined with the diaper changes every 2 hours kept us from 'good' sleep.
They did put the NG tube in this morning and I've already started giving him his medicines through the tube. We very much hope that we can control the nausea from the chemo with the medicines - last time, the meds (oral) made him throw up so we stopped giving them to him. He hasn't eaten much the past few days but we expect tomorrow he'll start eating again, although I'm sure he's still getting used to the feeling of a tube in the back of his throat. I came home with a stethoscope so now Jack Jr. thinks I'm officially a 'Dr.', not just one pretending.
We had tremendous help this weekend with Jeremy & Steph and Wendi's dad at the hospital and Jack Jr. had another great time at Randy & Marti's. We are so appreciative of everyone who has and continues to help - I know we'll need even more help when the third Parriera boy joins the clan (due date May 5).
Please continue to pray for Cash and all of the other young ones with cancer. Coleson, Christopher, and Jaimeson are just three of the many whom we've met and are sharing similar struggles together. I keep reminding Wendi and myself that our God is a good God and He knows each of us and even the hairs on our head our counted. For Cash that isn't too many at the moment and I'm shaving my head this week but you get the idea. We continue to put our faith and trust in God through this entire process and He knows our thoughts even before we think them. I still haven't been able to fully wrap my head around that and probably never will. I'm thankful we serve such a powerful and almighty God!
It's day three of round 2 and we are hoping to go home today. Cash does need a transfusion because his hemocrits are down but they are starting that soon. Here are pics that I didn't take yesterday (I'm not as qualified as the Snapsisters). The first one breaks my heart and the rest warm my heart:
Today we arrived at the hospital at 8:00 a.m. and after a few hours of hydration, they started the chemo treatments for this round. He received three different chemo's today and is doing well. We checked out a mat for the floor (like a gym mat) and he played on it today for 3 hours - throwing the ball, watching Dora, and playing Diego Dominoes (not really, just trying to eat them...).
He didn't eat much today but managed to eat a small flat of blueberries:
He also loves playing doctor and played with the 'eye thing' (I don't know the technical name):
Jeremy and Steph came down with dinner and Wendi is sleeping at home tonight, she is too pregnant to sleep in the super-comfortable sleepers in the hospital (that is a joke). We may not have to stay the full four days (chemo is only 3 days in a row for Cash) and are hoping to go home on Monday.
We also spent time with Ryan and Coleson and are I am thankful that God has brought us together, considering the circumstances. Ryan is a rock and an encouragement to us and we need that during these difficult times. Thank you as always for your prayers and have a blessed Sabbath!
Today Cash and I went to multiple appointments to get ready for starting the 2nd round of chemo. His levels are good enough to start, although he may need another transfusion early next week. Tonight Wendi shot this video of Cash and I playing 'Where's Dad?' (I just made up the name) - he's had a great week and we hope this round will go well. Please pray for Coleson B as he's back in the hospital with a fever - we'll be seeing them tomorrow and I hope they get to go home soon. Thank you for your prayers!
Thankfully this week has been uneventful - on Friday we have our meeting to set up the 2nd round of chemo. We anticipate starting this round on Saturday. Jack Jr. is heading to his 'Uncle Randy's' for a few days - he loves it over there and we're thankful that they can take him for the weekend.
Tonight I shot a short video of Cash saying a few words and Jack interrupting the shot to show off his smile and stickers...
On another note, a wonderful parent stopped by my office yesterday to share a scripture that was on her heart. I read it many times but didn't fully understand it until it was quiet and I had a moment to reflect. The scripture is from Isaiah 65:24 and it says, "Before they call I will answer; while they are yet speaking I will hear."
I find tremendous comfort in this scripture as it indicates that before I prayed the first prayer after Cash's diagnosis, God already heard and answered. In addition, Bishop Drayton told me this week that after he prayed over Cash when he was finishing his last chemo, he (Bishop) got very sick for the next three days, and believes he took some of the effects of the chemo from Cash. There are amazing things happening in our lives in spite of the difficult situation we have been faced with. I am continuing to thank God for what He is doing and what He will continue to do.
Thank you as always for your support and prayers (and thank you mom for your meatballs we ate for dinner tonight - they were Cash's favorite!).
Today I actually worked a full day while Wendi and Jodi took care of the kids. Cash had a short chemo treatment this morning and when I got home from work The Snap Sisters (www.thesnapsisters.com) took over. Here are a few pics they took - my job was to make sure they tried to smile although Cash has the 'I-don't-wan't-any-more-medicine' look...
We hope this week will be uneventful and on Friday we have our admit clinic visit - Saturday begins round 2 of chemo. God has certainly blessed us with handsome little ones!!!
Today was very interesting - Cash's stem cells were drawn from his blood using an apheresis machine. I can't begin to describe it so I took a picture:
The process only took about 3 hours, however, we had to wait another 3 hours to make sure they had enough good stem cells. Once we received the good word (they had enough), it was time to remove the port on Cash's leg. One of the oncologists came in and removed the adhesive and sutures around the port, then he placed a bandage over the soon-to-be-hole in his leg and removed the 8" long tube. I almost couldn't believe that much tubing was in his leg and for the next 15 minutes he held pressure on the entry to stop the bleeding. Cash actually fell asleep towards the end of this process and they put another pressure pack on his leg and that was that.
We were waiting to see if they'd let us go home but the surgeons determined because of the challenges he'd had with bleeding, we would have to stay another night. We made good use of the time though, playing Yahtzee and Mancala with Coleson B. He's a very strong and bright young man and didn't believe all of my stories for a second. Here is Cash and Coleson playing Yahtzee:
Wendi's parents spent the entire day doing yardwork at our house (We can't wait to see it!) and then came for dinner. Mom read Cash stories (he loves books):
Tomorrow we'll head home and we'll have another week of appointments and blood draws, etc., then return next Saturday for the second round of chemo. It was a difficult week but before Cash went to sleep tonight he recited a bunch of words we're teaching him - he can almost say his ABC's and he's almost got his own name and the most important name down: Jesus. Thank you Jesus for a successful surgery, stem cell draw, and a great day with new friends today!
And thank you as always for your continued prayers and support!
This morning Cash asked for a pad and paper (not verbally but you know what I mean) - I think he's ready to document the drama and trauma of his journey...
The surgery Cash had yesterday was very similar to the Hickman surgery a few weeks ago, the only change being the port/catheter they were installing was in his leg. We went into the pre-op meeting at 2:00 with the expectation the surgery would start at 3:15 and Cash would be in recovery at 3:45. Sounds easy, right?
At 4:00 the nurses came in and did a blood test just to make sure he had enough platelets for his blood to clot and around 4:30 we got the results and they were positive. So I took Cash to the operating room so they could put him to sleep - it was nice with the Hickman, they just put some propofol in the line and he fell asleep within seconds.
Then the waiting game started...at 6:15 I went to the nurses station and asked if I could get an update on the 30 minute procedure. I was told the doctor was just finishing and would be out soon. Around 7:00 he came out and updated Wendi, Jeremy, and I - because he's such a small kid, his veins are not that large and they were having trouble getting the line to work properly and were trying again. They did finish that around 8:00 but then he was bleeding (similar to the Hickman surgery) and they had to keep putting pressure on the spot so the blood would clot and he's stop bleeding.
I think it was around 9:40 when Wendi went back there in the post-op and a few minutes later we took him to our room. We were glad he was done with the day when we were notified he needed more blood drawn and they had to poke him again...:-( "He has four lines sticking out of his chest and leg, couldn't you use one of them?" I thought to myself (and Jeremy). He did great though and settled down and went to sleep around midnight.
This surgery was very similar to the Hickman surgery and we've come to expect challenges along the way. I was thankful the doctor didn't call it a day at 6:00 and say, "Well I've got dinner plans tonight so see ya later!" (The doctor was excellent by the way, all of them have been here at Children's.) We've continued to put our trust in God as He is the great physician and directs those that Cash has been in the care of these past three surgeries.
Today at 8:00 they are ready to start the process of harvesting his good stem cells. Yesterday afternoon Dr. Leary stopped by the waiting room and told us that by taking his good stem cells now (the ones that haven't been polluted by rounds and rounds of chemo) and giving them back in later chemo stages, they will significantly reduce the time in between treatments. Without the stem cells, it could take weeks for his blood counts to recover in between chemo rounds - with the stem cells being put back into his body, they can keep the treatments around 3 weeks apart.
The process today can take between 2 and 8 hours, depending on how good his counts are. We're praying it's on the shorter side so we can go home and get some rest, but it's not in our hands (...however that doesn't mean I can't pray for it)...Sorry this post was so long, it is only 5:30ish and we've not had much sleep...Thank you for your prayers!
Today was Cash's first platelet transfusion. I had no idea what platelets looked like and forgot to take a picture but if you've ever seen or drank hefeweizen beer you would think that is exactly what they gave him today. The transfusion lasted two hours and my mom and Auntie Geri were there to keep Cash company - the transfusion chairs are a bit big for little kids but we made it work:
He didn't sit there by himself the whole time but I took this pic to give some perspective of how big cancer is to little ones.
We were then notified this afternoon that his ANC's are high enough that they are ready to harvest his good stem cells on Saturday, but first he has another surgery at 2:00 tomorrow to install a port/line in his leg. They will use that line to filter blood to collect the stem cells from his Hickman to a machine and back into his temporary port on Saturday.
We'll be staying at the hospital tomorrow night after the surgery as they prepare for the stem cell collection - We have no idea how long that will take but my guess is between 6-8 hours. I've said it before but it begs repeating - the doctors have been great at not telling us all of this in the beginning, further re-iterating the 'one day at a time' mantra.
Jack Jr. will be departing tomorrow with his Uncle Dean, Aunt Jen, Dillon, and Kendra to the state basketball tournament in Yakima. He will clearly have more fun that us and that is a good thing - Jack Jr. has been amazing through this process. He still won't touch Cash's scar and he still tells me it scares him but it's healing tremendously and will be fairly unnoticeable in the next week or so. Jack is a self-taught sword fighter so I'm surprised he's afraid of anything of late...:-)
So by this Saturday we'll have been at the hospital every day since Monday and next week we have 6 or 7 appointments and we'll start the second round of chemo on Friday (next week). One day at a time, one day at a time, one day at a time we keep reminding ourselves. I am convinced that God is teaching us what Jesus really meant in the Lord's prayer when we are to pray, "Give us this day our daily bread." I am thankful to God for continuing to carry us through this journey and as Solomon writes in Proverbs 3:5, "Trust in the Lord with all your heart, and do not lean on your own understanding."
Please pray for a successful surgery and a more successful stem cell draw, that when they give the stem cells back to Cash during 'phase 2' that they replenish his body of what he needs to continue to fight. Thank you as always for your support and prayers!
What a difference a day makes. If you read yesterday's post you'd know that we had a tough day with the insertion of the NG tube and the meds that made Cash loopy (that is putting it mildly). Today my mom and Auntie Geri came to take care of Cash and Jack while Wendi and I went to work.
When I got home from work, Cash was sleeping in my mom's arms:
Cash had a 3:40 appointment for a blood draw, then a meeting with the oncologists, and a shot of chemo (he receives are particular chemo once a week through the treatment, in addition to the regular chemo schedule). Our primary oncologist, Dr. Leary, was very encouraging and positive and it confirmed to us once again that we are in the right place. Her and Wendi even shed a few tears and Dr. Leary once again said they were giving this cancer everything they had. Cash had a great day and while we might be crazy, it appears the chemo has already started to knock down some of the tumor - he's trying to walk again and his eyes appear to be looking slightly to the left again.
My cousin Sheri ordered us the bracelets like Lance Armstrong's "Livestrong" for friends and family and they were waiting on the doorstep when we returned from the doctor. Here is a picture of the bracelet, the one I'm wearing will remain on my wrist for a long, long time:
We have about 100 of them and we will try and distribute to friends and family so be patient, I know my mom will be taking a bunch with her to Lynden. Thank you so much Sheri for thinking of us, what an amazing, physical reminder of Cash's fight!!!
Then when we got home, my dad and 'Uncle John' came over for dinner. Cash crawled around everything and Jack ran around the house like a mad man. Here's a video of Jack, Cash, and my dad sword fighting tonight...
We still have a long week ahead of us, tomorrow we have an 8:00 a.m. blood draw and if Cash's platelets are low, he'll have a transfusion. His ANC's (don't ask me what that stands for, I can't remember) are rising, which means he'll probably have a surgery on Friday to install a port into his leg, and then the next day they'll hook him up to a machine and harvest his good stem cells.
I don't quote Ice Cube much (in fact, probably not ever prior to this), but today was a good day. We were reminded that God is in control and have been given the strength to keep fighting. More updates to come and thank you again for your support and prayers!
At first glance, if you only read the title, you would think we were in and out of the hospital today without incident...Well not quite. The transfusion went well, in fact, Cash started to brighten up and color came back into his cheeks so we were glad that part went well...it was putting in the NG tube that didn't go as planned.
There are two different ways to get the tube in, one without the 'guide' so-to-speak, and the other with the guide. They tried to put it in without at first and it just wasn't working - a bloody nose and swollen eye later, they managed to get it in with the guide. The second time it took only 10-15 seconds which was a relief, but by this time he had anti-nausea meds and benadryl (for the swelling) in his body and was a mess basically until now (he's finally sleeping)...
But, the 'in and out' part of the story has to do with the tube...the way they tried to adhere the line coming out of his nose to his cheeks (and around the ear) wasn't 'foolproof' for a toddler and Cash yanked it out of his nose this afternoon. I was not interested in putting it back in without a better adhesive so we left it out, basically negating all of the trouble the poor guy had to go through. We will go back in tomorrow to have it reinserted (this time sans drugs) and receive the training so we can start using it.
I'm truly hoping tomorrow we can be 'in and out' and hope things go a bit better than they did today - Wendi and I had to remind ourselves that tomorrow is a new day and with that we pray comes renewed strength and courage to help Cash fight this disease. We are all tired and will be sleeping soon so thank you for your continued prayers and support!!!
Last night I emailed my director and assistant principal letting them know what my plans were this week for work. I indicated that today we'd be at the hospital but barring any setbacks I'd work the rest of the week...Oh how things change...
Today Cash spent 8 hours connected to the machine to run the test on his kidneys and about 2 hours into the test our doctor came by and indicated that his hemocrit's have dropped below the safe zone. Tomorrow at 8:00 Cash has a 4 hour transfusion (the first of many I imagine) and then he'll also have the NG tube installed because they are concerned he's not getting enough nutrition. The tube will go into his nose and will run down into his stomach. We'll be able to give him his meds this way and he'll have a backpack/pump that will administer about 4 cans of Pediasure each day.
So that's tomorrow, then on Wednesday he has two PT appointments and then we'll be trained on how to use the pump. Before connecting the pump or administering meds, we'll have to check if the tube is in the right place by injecting a bit of air into the tube and then using a stethoscope, listen for the bubbles in his stomach. In addition we have to draw the fluids up the tube to make sure it's in the right place.
I think Jack Jr. really thinks I'm a doctor now - he's been watching me put on gloves and flush the lines, give Cash a shot, and today we did a dressing change on the Hickman. Now with the stethoscope I'll complete the 'Doctor' look in his eyes - I liked playing doctor as a kid but this is ridiculous...:-)
The doctors also expect his levels to rise sometime this week and Cash will have one more surgery to install a port in his leg. They will keep us overnight and the next day he'll be hooked up once again to draw his good stem cells, which will be used later on in the treatment (referred to as 'consolidation'). So it appears we'll be in the hospital every day this week, just in time to recover and start the second round of chemo.
Needless to say, my plans don't mean much but I'm very thankful that Bro. Doug (Zion's Director) for giving me the time I need to help Cash through this.
We had a brief but important visit today from Bishop Drayton and Mother Drayton - Bishop was responsible for the vision behind Zion and a little over two years ago he prayed over Wendi that she would conceive - two weeks later she was pregnant so his prayer today for healing was powerful. Cash is a miracle baby and we continue to trust that he will be healed.
My prayer tonight is not only for Cash, but for Coleson Brink who is also at Children's on an extended stay due to his levels being low. Today while we were walking around with Cash we were saddened by all of the other children with cancer receiving treatments - it can be easy to see the hospital as a sad place, but I am preferring to see it as the place where kids go to get better...
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