Huggable Hope Sewing Day

Do you remember the adorable dolls my ever so amazing sister, Robin, makes? Here's a reminder...

Yes. I know. Be still, they are beautiful!

There was a great outpouring of support for Robin's idea to give the dolls away to the little girls and boys staying at Brent's Place. We had hoped to have a production day shortly after the first batch of dolls were delivered, but you know, since Robin has been busy taking care of, teaching, and loving her family AND my kids when we've been away, a little more prep time was needed.

This is the first batch of dolls.

As you can see, these sweet dolls bring hopeful comfort and delight.

Jamie said over and over, "Que bonita!" How pretty.

Ginger loved the cowgirl hat and boots just like hers!

Please join us for a day to cut, sew, stuff, and stitch love for the future owners of Huggable Hope Dolls.

WHEN: Saturday, May 18th from 10am-3pm (this is NOT a required time frame, more like an open house thing! If you can help at any point during this stretch of time, just drop in and that would be great!)

WHERE: Summitview Community Church, Room 106, 1601 W. Drake Road, Fort Collins, CO

WHAT: If you can sew please come! If you know nothing about sewing, but have nimble fingers to: embroider, turn out limbs on dolls, cut out patterns, iron seams, stuff dolls please come!

BRING: If you have the following items, please bring them!

• Sewing Machine(s)
• Shears
• Iron/Board (if a small one)
• A friend! If you know someone who might want to help, bring them along.
• I will provide all the materials for the dolls.

Visit the Facebook event for futher details for the sewing day and to share with your your friends. You can also email huggablehopeproject@gmail.com.

 

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Concerts, Snow, and Strangers in the Grocery Store

Sunday afternoon we made the trip down to Denver because our friend Katrina, and her friend, Benj Heard, were playing a special concert for the kids at Brent's Place. If you haven't had a chance to download her EP, it's free and so worth it! No pressure to tip, but if you do it, it's ALL being donated to Brent's Place. Here's the original details...

Esther was a bit star struck and didn't want to be in the picture.

She warmed up a bit later on

Benj is Katrina's writing partner and they also sing together. They were in town playing music from their duet, The Likes of Us, at a wedding, so it was a perfect opportunity to see Brent's. Last summer Benj was very kind to share a song he had written for a two year friend in his home state who had cancer. "Love is Here" is on his own EP, Without a Parachute. Both of these albums are also for free on Noisetrade.

The kids loved visiting and had a great time seeing some of the friends they have made there, including some of that good ol playground silliness that ended up with Rourke and Collin tormenting the girls. It was hard to keep a straight face because those boys were so good at it.

Esther had an appointment in Denver today. It took me an hour to drive 17 (mostly on the interstate) miles, so I decided to call and see if there was any way we would do the lab work, etc. locally in Ft. Collins. That worked out and we were able to see Mr. Buhwaandin (Brandon), Esther's favorite local phlebotomist. He is SO good with kids and has never done a bad poke.

This is Anthony's view in FTC...ours was much worse on I25

Well, the lab work worked out, but the results were a bit of a bummer. Esther's white count is pretty high right now indicating her body is fighting something, and there was still some issues in her urine. It's likely the UTI is still present. We have another appointment in Denver on Wednesday to redo the labs and see what's next. They don't want to start her at home meds until she's healthy enough, so we're delayed at least a few more days.

I just love how God works out circumstances. Because of the snow Esther and I ended up at the grocery store--she never goes to the grocery store. While I was checking out, we met the neatest stranger who is actually quite familiar with this road. He came up and told Esther he had to wear a blue mask like hers for a long time. I practically squealed "really?!" People usually stare with a raised eyebrow thinking that Esther is the one who will get them sick, especially now that her hair is growing back. So...to have someone know what the blue mask is for was really cool.

Cody is three years out from a transplant following AML (leukemia). He had to have two transplants, the first one didn't work. His sister was the donor, but she was a bit too perfect match. His second transplant worked out better. So next time you see Cody at the JFK King Soopers, tell him hi. His treatment was in Denver, but at Pres. St. Luke's. It's great to see someone on the other side of all this!

 

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Got Bling?

For Christmas Lydia and Frannie received a longed for gift from their Uncle Booey (a nickname given by Frannie) and Aunt Lexi. A lunch date complete with an appointment to get their ears pierced!  Since Christmas time was a bit crazy, the date finally happened a little over a week ago.  Their cousin, Delaney, was also given this sweet gift.  Here's how it went down......

All three girls are very happy to have their ears pierced.  I do feel bad for lying to Frannie.  I told her over and over she didn't have to do it if she didn't want and she kept wavering back and forth, but it was kind of neat to see her realize she could do something that might hurt. "I did it!"

And hey, there is a perk to cancer...magic cream!  We use EMLA to numb Esther's port site before her butterfly needle goes in and Frannie and Lydia reaped the benefits of the supply I keep in my purse.  I wish I'd thought of it for Delaney, but it is neatly filed in the back pocket for when the next batch of girls turn six!

Speaking of bling...a friend of mine has organized a Lia Sophia fundraiser.  It's just in time for Mother's Day or Graduation gifts.  There is a great special this month...you can get 4 items HALF OFF when you buy two at regular price.  The 50% discount is applied to the MOST expensive pieces...not a bad deal.

You can order online until Saturday, April 13th, or if you're in Ft. Collins and want a fun girls night out or would like to see the pieces, the party is this Thursday.  Email me and I'll get you the details.  Here's the online ordering info...

You can get your Mother's Day, Graduation and Prom gifts online and 100% of the profits will be given to Esther's family. You can go to www.liasophia.com/melisa and click on 'browse our jewelry' and then input the hostess first name Esther and last name Alvarado. You can share this with your friends and family no matter where they live and we will ship the items to them. The monthly sale applies to this show as well, get up to 4 items at half off when you purchase 2 at regular price - the MOST expensive are half price.

They did it!

Home, and a week's delay

In clinic today she said "I don't fweel so well."

We did make it home on Saturday evening. I posted it on facebook, but realized lots of people praying for Esther aren't facebook friends with me...sorry!

It was a bit of bumpy ride out of the PICU with some out of my comfort zone advocating and working out a diagnosis of a UTI...which I knew would happen because of the Foley bag. Esther is on antibiotics for the UTI and it will hopefully clear quickly, please pray for that. It's her weak immune system's first need to fight infection and there are lots of things that could go wrong.

Because of this infection and some low levels amongst her electrolytes, her treatment will be delayed a week. This is a four week cycle, the first week she is inpatient, the next two she takes some other medicines at home, and the fourth week has some preparation for the next inpatient cycle. Since we can't start the at home medicine this week, everything is backed up a week.

As Anthony and I were talking about it, he was commenting that now her last inpatient treatment would be the first week of July rather than the last week of June. She will still have two months of treatment following that last inpatient stay, but there is an end in site. I think we've been focusing on that end a little too much and that has made the days in between very, very long.

How often in life are we living in the future? I think goals and end of treatment dates are things to look forward to or motivate us, but our hope can not be fulfilled by an uncertain future. The boundaries for our days right now include a longer treatment. These verses came to mind....

The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. Psalm 16:5-6

You hem me in, behind and before, and lay your hand upon me. Psalm 139:5

God holds our lot. When I am trusting and hoping in a date on the calendar, I am not pursuing my chosen portion. I quickly forget that even in the midst of a difficult road, the lines God has given me fall in pleasant places, and that His hemlines feel constraining, but His love unbound by anything on this earth.

The only thing that is real today is that God is enough for today.

Some things to pray for:

• Esther to heal and fight this urinary tract infection
• The other four kids have colds, we've been having them wear masks and have kept Esther in her room away from them, please pray she doesn't get it.
• For us to find our peace in that Jesus has given us these hemlines and that we would rest in them.

• Esther is so, so weary. These last two rounds of antibody therapy have been much harder than we expected and aside from her transplant, harder than any round of chemo. Pray for her endurance, for her eat and drink, for her to laugh and smile. Pray for us to encourage her and that she would believe that encouragement. The other day she said she wasn't brave because she cried when we had to de-access her port. She is so brave, far braver than I.

 

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5 Hour Nap = Midnight Bedtime

Esther did very well today! She was tired...and took a five hour nap. It is nearly midnight and she's still awake... Oh well, the nap was needed.

She's still pretty puffy from lots of extra fluid and because she was out for 5 hours, laying on her left side, she's looking a little like Popeye tonight. The extra fluid will go away over the next week and is totally normal under these circumstances, but here's her puffy smile.

We should be going home tomorrow night!

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Slow, Slow Day

So far everything is going better than the doctors anticipated. Esther did just spike a fever, but that is very expected with IL2. Monday's problems didn't start until the end of the infusion, so I'm headed to bed just in case it's an early morning.

 

One of Esther's other beloved nurses stopped by for a bit today and they read "The Hiccupotomus." Esther has said she wants to be a nurse like Miss Rebecca. If so, she'll be a very good nurse. Another gift this week has been warm meals delivered three nights from Brent's Place. It was so nice to see friends today, and thanks for the hugs!

 

Thank you for holding us up.

 

 

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This is the world's largest airplane bathroom

I've been shuffling my feet about posting updates....

Everything is going smoothly thus far today. The infusion began about 9am Wednesday and will go until about 5am Thursday. Esther's blood pressure has been stable all day. She's on a tiny amount of oxygen. The doc today joked her nasal cannula is actually a mouthal cannula because she's wearing it as far from her nose as possible. I keep joking with her about her mustache...she doesn't think I'm very funny. I don't blame her.

Tomorrow morning we will try to add the IL2 in addition to the chimeric and see how she does. Please pray for our nurse to be really keen to any coming issues and for her to be able to handle the slower rate without reacting.

Some comments about being in the ICU...

Yesterday I overhead a parent trying to convince the nurse that "we parents need to have something to take the edge off so we can be there for our kids." This parent was making this argument for about 30 minutes. Later in the day she was talking on the phone, while we were in the nourishment room (kitchenette) that they "have all the good stuff right here, so it wouldn't be too hard for them to give some to the parents too." Hmmm....

So did you know that this is the worlds largest airplane bathroom? It's about 150 square feet, except that the actual functioning part of the bathroom is still the regulation "must fit in a broom closet" size. Because this airplane bathroom does not come with a door, or walls for that matter, parents get to share a community bathroom.

I do not like shared bathrooms, I do not like them Sam I Am! Since becoming a germaphobe, I have been tip toeing to brush my teeth and shower and doing crazy things, like accidentally kicking over the trash can while trying to open up the laundry basket with my foot.

We had to share a bathroom for a while during Esther's transplant, but it was kept really clean and parents were better about keeping it clean. This one isn't kept up as well and has a rogue shower head that likes to pretend we are going European and sprays the entire bathroom. Oh well, I think I will add this to the list of things to discuss when I begin to talk about my feelings about germs when I enter germaphobia therapy.

The nurses down here are nice, but I think they don't know what to do with me. They work with such trauma that I'm sure it's a different experience to have a parent who is chatty. Sorry PICU nurses...you've got an extrovert who is really used to the hospital environment...I hope I'm not bugging you too much. So far we've had a recently engaged skier who used to be a traveling nurse (made me feel closer to you Tim and Amber), a retired Army nurse who told me all about some of the crazy things he did in the battlefields (the PICU must seem so mild), one amazing floating nurse who worked so hard the first night taking care of Esther's reaction she had to sleep in a sleep room before driving home, and the last couple nights we've had a sweet girl who grew up in the Air Force and got the itch to move to Colorado. She almost moved back to the East coast, but made the right choice because you know, Colorado has nice people and great outdoor activities.

Thank you for taking this trip with me on PICU Air where we have nice nurses, spacious bathrooms, and the occasional parent just looking for the good stuff.

 

 

 

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We'll try again in the morning

Thank you for praying today. The antibody therapy has been shut off for the entire day to allow Esther's blood pressure to become more stable. Her fever has also broken, so that is good. We won't start the therapy again until the morning...in part because the pharmacy that dispenses part of the treatment is closed and in part to give her body more time to recover. She's still on a little oxygen, mostly just for sleeping.

There were some neat moments throughout the day. While I stepped out for a bit this morning, Esther had a special visitor. For about three hours the only thing she said was that "Mr. Ricardo came to visit." She was in a lot of pain this morning, and the way she copes is to go very still and quiet. This was definitely a bright spot for her.

She also had a special delivery from her friend, Boden, who was up in the clinic starting some big, yucky chemo for his brain tumor. Boden has been in treatment since October, but his road is gaining some intensity right now and his parents, Ty and Stephanie, covet your prayers. His mom had spotted a fun make your own tiara activity book and thought of Esther. She was pretty tired and weak, so we only made one tiara, but she's excited to do it again tomorrow.

One of the neatest things that happened today is when she requested to paint her dolly's hair and to listen to "my songs." That is what she's calling the album our friend, Katrina Stone, just released. As she listened to the songs her body calmed and you could see on the monitor exactly where she started listening. I love music and how it ministers to our being, how it can encourage our hearts, inspire our souls, and calm a sick body. If you haven't had a chance to download the EP, go for it! It's a free download and you won't regret it.

Tomorrow we'll start the medicine again at the slowest rate allowed by the protocols and keep a very close eye on how it all goes. There are two parts of this therapy, IL2, which basically revs up her immune system (it's the godfather growth factor), and chimeric acid, that that tells her immune system what to attack. If she has a similar reaction with her blood pressure crashing we will stop the IL2 part of the therapy for this round and continue with the chimeric alone.

The protocol Esther is on lays out 5 chimeric treatments. Courses 1, 3, and 5 have the regular growth factor, courses 2 and 4 have IL2. This is course 2. If she does react again we will not do the 4th course with IL2, but it will be like the other three courses.

I don't know what to hope for...if she reacts again we will be done with IL2 and we won't have to do another ICU round. But the study has shown that this IL2 does help the immune system more thoroughly fight neuroblastoma. In any case she will still have the rest of the rounds of therapy. Relapse of this disease is a very real possibility, and the best shot for cure is the first shot.

A couple weeks ago I wrote about Justin. Would you please lift up him and his family? They have been hitting roadblocks at every turn and this latest relapse is moving quickly. All of the therapy options they have pursued so far have been held up by one problem or another, and they are in Philadelphia pursuing their final options.

As Esther has been facing her own hardship in treatment I have thought of Justin and his parents, Lori and Jeff. The fear that this therapy, a therapy that could really help Esther, may not be an option is difficult to accept. That a cure for Justin or a cure for Esther is just out of arms reach is heart wrenching and feels terribly unfair.

I keep thinking about how all of this is just stewardship of the resources God has given. He will heal her as He chooses. I would love to say that thought brings me abundant peace, but right now, my heart is clamoring for control. God knows and has given the medicine, and He will use what is needed for His plan for her life. I want a really clear direction with no scary side effects that ends in happy faces, butterflies, and world peace :). I should probably finish this blog post and kneel down at the throne of mercy to find help in this time of need. Tomorrow is a big day, and I need rest in every sense of the word.

 

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A long, rough night

You know it always gets you when you say things are going well.... Not really, God is sovereign and has gone before us into this ICU room.

The first antibody therapy caused a lot of respiratory distress for Esther, so most of the day we were watching for that. About an hour after I wrote last night Esther's blood pressure continued to decline. She had also been getting pretty puffy, all a concern her capillaries were leaking. She continued to have a high fever. There was also a concern about her not being able to pee all day, so they had to place a foley bag.

In the night the nurses had to turn off her pain medicine and the antibody therapy. They gave her a couple different things to attempt to get her blood pressure to rise. Another factor is making sure she has enough blood to maintain a good blood pressure, so she was getting a blood transfusion, but had a reaction. She still is having low blood pressure and a very high fever.

I'm not sure what will transpire the rest of the day, if we will continue with the therapy or not. At this point, her blood pressure needs to recover and fever respond to meds.

Please pray for her to rebound from this quickly today and for wisdom in moving forward. Pray I would be a good advocate for Esther and ask the right questions. I really miss having our normal nurses and doctors on the floor. I felt uneasy a lot of the night. I know these nurses and doctors are highly trained in what they do and red flags for them are different than red flags for oncology care providers. One of the fellows (doctor pursuing a specialty in oncology) we've seen a lot through this journey came in pretty early this morning and it was all I could do to hold myself together, it was so good to see her.

This is reminder for me that our care providers are secondary, and God is a good Father who cares for Esther and knows our hearts in all of this.

***I just talked in depth with the fellow Dr. Beth, and the oncology attending physician this week, Dr. Eisenman, and there is a plan laid out in the protocol for moving forward if these side effects continue. The goal for today is to see her blood pressure rise and get her pain under control. We'll then start the infusion again at a lower rate and watch her more closely. I feel comfortable with the plan for today. Dr. Beth said she was so happy to see who the attending physician and fellow in the ICU this week because they are really good. That makes me feel better.***

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Painting Strawberry Shortcake's Hair

We've checked into the ICU for Esther's second antibody therapy. You certainly gain some funny looks when you just walk in to the ICU for treatment.

This round of treatment needs to be in the ICU because the growth factor she received to tell her body to release cancer fighting cells has an extra something that causes them to bind more strongly to any neuroblastoma cells...and since neuroblastoma looks like nerve cells, it also binds more strongly to nerve cells. I think that's right...sometimes my years studying biochemistry come back, and I understand. Other times my mommy heart and study of Human Development & Family Studies listens more carefully and all I hear is "this will hurt more."

I am happy to report that we are about 60 minutes from finishing today's dose of medicine that causes all of these nasty side effects and the day has been fairly uneventful. She has had a high fever most of the day and some significant pain, but it is being controlled pretty well. In the last hour her blood pressure has started to dip, so the nurses are working to get it back up. All of this is relative...a full day of a 103 to 104 degree fever, a heart rate up into the 190s and 56 respirations/minute would be quite concerning in normal circumstances. We are in the right place.

Our child life specialist, Alli, brought Esther a new Strawberry Shortcake doll. She has a white streak in her hair that when painted with cold water, turns dark pink. Esther painted her hair all. day. long. I was cracking up watching her "paint" as she fought sleep most of the day. Just now she was painting in her sleep.

This video is of her combing the part of the hair that you can paint, I thought it was a little funny the way she was so determined...this girl was SO tired, but she wanted to comb it so her hair wasn't crazy. She did this for a few hours today with some good snoozes in between, but she would wake up mid stroke and keep combing or keep painting. I do this sometimes when I'm writing an update, but I don't recover quite as quickly...my head bobs and I end up typing like this....kkklllllllllllllllafffffffffffffffffffff.

 

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