HOME🙏🏼

Good Evening Team,

AMAZING NEWS... After a few rough nights. Hope was finally able to get her drains out. They were waiting for the doctors to move her to a "regular" room (because they cannot discharge from the pediatric ICU) but in true Hope fashion... she proved them wrong was released from the PICU and headed home finally at about 8PM last night!!!

As you can imagine this is a huge relief. No more being woken up EVERY hour. She was finally able to shower and I am sure her own bed is going to be a big comfort. 

She arrived home to a full walkway lined with handmade signs... and decorated for Christmas still. 

While she may have delayed Christmas a bit, what a great way to ring in the New Year. 

This year is going to be a lot of adapting but with this army around her I have no doubt she will succeed. 

Again, thank you all for the last 2 weeks of support and for the support to come through the rest of the season!

WE HAVE HOPE!

Thank you,

Coach 

Then Jesus said, "Did I not tell you that if you believe, you will see the glory of God?"

John 11:40

Drain Free

It’s been a rough few days but today was MUCH better. Hope finally got the last drain in her head removed so she’s able to sit up and move a little bit more. They also removed one IV and her central line🙏🏼

If we can keep her pain under control then we will be moved out of the PICU tomorrow and onto a regular floor.  One step closer to coming home. 

She wants to come home so badly and John has repeatedly said, “I miss my family.” 

I’ve been feeling defeated and helpless lately. I wish more than anything that I could take her place. We know that God will carry us through this storm and we will continue to put our trust in Him…..some days are just harder than others though.

 

Final Results

Today was a good day🙏🏼

We got the final pathology report back today and it verified the initial findings that the tumor is a pilocytic astrocytoma grade 1 (if you’re going to have a tumor this is the one you want). The plan remains the same to start an oral targeted therapy drug in January, which will last approximately 2 years.  The goal would be to reduce the size of the tumor over that period of time. Trusting Jesus and His plans. 

MRI is scheduled for 6am tomorrow morning. Pray that her ventricles have shrunk and her spinal fluid is being absorbed normally by her body. If all goes well the drain will be removed from her head and we’ll be able to move out of the PICU and onto a regular floor. One step closer to home. 

Christmas in the PICU

Christmas looked a little different this year but we made the best of it and made sure both kids enjoyed the day. Hope and I FaceTimed Jamie and John at home and opened up gifts together. Then Jamie and I switched so we could both spend time with each of them. The grandparents loaded us up with Christmas Eve and Christmas dinner and they made sure we didn’t miss out on any of the yummy holiday treats either. 

We are so thankful that Hope had a good day. She hasn’t needed much pain medicine and her beautiful smile is finally coming back. I think it helps that she just got her first phone for Christmas😉

My parents brought John and Macy up and we waved to them from her window. Hope misses them both so much. 

Our Neurosurgeon’s daughter baked her gluten free donuts and made her trail mix. He came in on Christmas…on his day off to check on her. Her bestie also delivered gluten free coffee cake and cinnamon rolls to the hospital and to our house so the four of us could enjoy the same Christmas morning breakfast. God has surrounded us with so much goodness. 

We love you all and are so grateful for Christ and His mercies.

WE HAVE HOPE🙏🏼

MRI

We took a few steps back and the MRI results were very disappointing.  We had hoped they would be able to remove all of the tumor, but it turns out there’s a large section of the tumor still in her brain. As long as the spinal fluid begins to drain and be absorbed by the body the way it’s supposed to, the plan is to start an oral drug in January that is similar to chemotherapy.  The drug’s purpose would be to shrink the tumor over time with the hope that she won’t have to have any additional surgeries.  The oncologist is still confident the pathology will likely come back as a pilocytic astrocytoma grade 1 (benign tumor). It was a tough day yesterday but today was much more encouraging. Praising Jesus in this storm.

Longest Day of My Life

Hope was wheeled into surgery at 11:30am yesterday. In true Hope fashion she was escorted all the way to the OR by the cutest black lab service dog named, Gerdie. The Chaplain came in and prayed with us, we said our tearful good byes and then waited for 10 long hours for her surgery to be done. 

They updated us every hour but the waiting was pure torture. We sat in her room all day blasting worship music, hanging her get well signs and decorating her room for Christmas. 

At 10pm she was finally wheeled back into her room….extubated. Praise Jesus. She was so afraid of waking up intubated like she was on Saturday after her first surgery. 

The surgeon said the surgery went very good and they got if not all of the tumor at least the vast majority of it.  She still has one tube to drain her spinal fluid (instead of 2).  They don’t expect any issues when she wakes up other than she may not be herself for a little bit because of the manipulation of the brain. There is a titanium plate covering the place where they entered her head so boxing and tackle football will not be in her future…. not that she was planing on either. Ha.  The tumor was soft when they went in for a biopsy but when they went in to remove it, it was as hard as a marble. Because of this it took them much longer than they initially planned. They were able to avoid cutting any of the veins so there wasn’t a risk of stroke but by avoiding the veins it left them with a very tight corridor to work in.  No transfusions were necessary as there was little bleeding.  They were able to clear at least one side of the area where the spinal fluid drains the question is whether or not her body will be able to absorb it, which will determine when she can have the tube removed from her head. She’ll have a MRI in the morning to see if they got all of the tumor.  

Keep praying for our girl and remember….WE HAVE HOPE!

We Have HOPE

Once again we are reminded that we are not alone on this journey. This is no surprise to God that we are surrounded by the most amazing friends and family that are covering us in prayer. All part of His plan. 

Isaiah 41:10. So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand.

Tuesday 12/21/21

Good Evening everyone

Apologies for the lateness but just walked in the door.

FIRST... WHAT A NETWORK OF AMAZING HUMANS WE HAVE... organizing, praying, reaching out, just being an all around amazing team. A personal thank you to all of you and your families.

Trina set up a prayer chain. Of course this amazing network filled it up pretty darn quick. She did go ahead and add in additional spots for those of you who wish to sign up and leave a message to the family. The link is:https://m.signupgenius.com/#!/showSignUp/20f084fa9aa29a31-prayers

Thank you to those who could cheer her up today at the hospital to prepare for her surgery tomorrow. For those of you who could not make the trip, we know you were there in sprit. There will be many times over the next few months for us to gather and lift each other up

NOW FOR THE MOST IMPORTANT... HOPE UPDATE!

AMAZING NEWS!

From Jamie: 

The family saw the oncologist and she just received word back from pathology that the tumor is pilocytic astrocytoma grade 1 … which if you’re going to have a tumor this is the one you want to have.  They likely won’t be as aggressive to remove all of it because of the type of tumor and the risk associated with removing all of it. If they’re not able to remove all of it they have a bunch of options later to take care of the rest of it.

WOOOOOOO!!!!!

Basically this type of tumor is typically benign and grade 1 means it is less likely to grow, grow fast, spread. Best news of the worst kind of news. While removing the mass should hopefully end the restriction of spinal fluid and the cancer risk, it will be a bit of time before Hope is 100% and back to participating in school and soccer. There is a chance she may make it home for Christmas but not likely. Knowing Hope she will push to be released ASAP. The spinal fluid will need to begin to circulate properly and the usual down time after any surgery will apply.. Doctors believe she will be able, in time to participate in all activities (except boxing and tackle football per Jamie ha!). Recovery time is yet to be determined and I am sure your support along the way will help!

The surgery will begin, as of a few hours ago, later in the day so she can have a CT before they begin. Again, they still believe it is an 8 hour surgery. Anyone who has had a loved one undergo surgery knows this can change slightly. As we have information tomorrow, I will send it immediately. 

Dr Shafron is ready!!!

As always, feel free to reach out at any time. Thinking about all of you and your families. 

WE HAVE HOPE

Thank you again 

Coach

Monday 12/20/21

Good Evening again Team!

Another long day for the Birtch Family however they are staying positive. Many of you have reached out in some way and I am positive this means so much to the family. Not the way we want to be reminded that we are surrounded by some pretty amazing people but I am thankful to witness the support. 

Currently the pathology report has not come back. As I mentioned in the last email, the mass will still need to be removed regardless of the report. The Neurosurgeon was able to meet with the family. FIRST WORDS OUT OF HIS MOUTH,  "Man, you all know a lot of people. I have people calling me left and right asking about Hope" From Jill: With that being said, he rearranged his schedule and bumped her surgery to Wednesday Morning... I guess it really is about who you know"!!! 

Hope is very ready to go home and very thankful for the move to Wednesday. With the surgery being moved to Wednesday, there is a chance she may make it home for Christmas and well, we know the power of staying positive. This is in no way the end to her recovery but it is a step forward. The surgery will take about 8 hours plus the prep and recovery time. Wednesday will be an especially long day for the whole family. The Neurologist will be in to consult tomorrow (and expected to have more information). Scary situations all around made a little more tolerable by those supporting them...and their strong faith. 

As you know Jamie and Jill have a son (John) who is somewhat aware of the situation. Family has been staying with him and Jill and Jamie have taken turns at points to run home, clean up and spend time with their son. Hope is still pretty tired, understandably and is able to read messages, respond to some and watch some tv programs. Again her energy is limited and it may be a bit before she responds to friends. BUT then again this is Hope and I am sure doing more than any human should at this point. 

I will continue to send updates as I have them or at the end of the day. Trina Wise said it may be a good idea to start a prayer chain for the family that covers the entire day on Wednesday. Please let us know who is interested. 

Again, if any players, families need ANYTHING feel free to text or email ANYTIME. I appreciate all of you and the family is "truly humbled and so incredibly appreciative of all the love, support and prayers. We feel them and they are keeping us going"

WE HAVE HOPE!

Thank you all,

Coach

Sunday 12/19/21

Good Morning Team:

I will do my best to keep everyone updated. 

As of now pathology is not back yet but should be back tomorrow evening. This should help determine the next step. Surgery to remove the mass is the plan. From what the team of doctors can see, the mass is in a place that is operable. Regardless of the pathology results it will need to be removed to prevent further constrictions on the flow of spinal fluid. As you know the restriction caused her brain to swell. When they biopsied the mass they also put in drains to slowly reduce the fluid causing swelling. The drains are designed to slowly remove fluid so as to not cause anything to go out of balance. This means she is supposed to stay in bed ... granted Hope already asked the docs if she can just stand up and make the fluid drain fast so she can go home (should we expect anything less from her???) Surgery went well. Hope did wake up and they did remove the breathing tube. UMMM the team must be rubbing off on her since Jill and Jamie said she talked a bunch (yes our quiet Hope evidently turned chatty!)  As things stand, the surgery could be Christmas Eve. Again, a waiting game and as you know, things can change.

Brookie (from the 2010 team and Hope's best friend) along with her parents (The Wise Family) arranged for her neighborhood friends to make signs and bring them to the hospital. Her window looks out over the Christmas tree lit up in front of the main entrance. We were able to stand a bit back and wave, facetime, shine lights and cheer her on. Again no visitors are allowed but she did manage to get up and wave back for a bit. 

Please continue to pray and remember WE HAVE HOPE!

Coach

My Baby Girl (Saturday)

Never in a million years did I think I’d be sitting in the ICU asking for prayers for my baby….only this time it’s for my sweet girl. 

Our entire world has been flipped upside down yet again but we know we serve an awesome God and He will see us through. 

Below are emails Hope’s wonderful soccer coach has sent to our team to keep everyone updated. I thought this would be the best way to catch everyone up. 

Good Evening Players and Parents,

This is probably one of the hardest emails I have had to send as a Coach and probably a harder one for families to read. 

Hope is currently at PCH in the PICU. 

Information from Jamie and Jill:  

(I did not want to shorten the info since this team/families are pretty bonded and it helps to know exactly where she is currently)...Hope woke up Saturday in the middle of the night with a headache and throwing up.  As the morning went on she started getting lethargic so we called 911 and they checked her out but couldn't see anything wrong. We took her to the hospital just to be safe. When we got to the hospital everything went downhill and they ended up doing a CT scan and found a large mass (6cm) in the center of her brain that is restricting the flow of her spinal fluid, which is causing her brain to swell. They airlifted her to PCH and right now she's in surgery getting a biopsy on her brain and tubes to release the spinal fluid from both sides of her brain. She'll then get an MRI and the sample of the tumor will be sent for biopsy. Depending on what they find she could have surgery today or tomorrow or if they need to wait for full pathology she won't have surgery for several days.

The biggest thing the family has asked for is PRAYERS. Please no phone calls however texts or emails can be read when they have a moment. PCH limits visitors to direct family and the girls will not be able to visit Hope. Trina (Brookie's Mom) mentioned sending positive videos that Hope and her parents can watch ... and we know how much the girls like making videos!

Personally, I want all of you to remember, even on the worst games, HOPE does not give up. She is a fighter, she is positive, she is tough. Bubble wrap and Duct Tape can not fix this but knowing the kind of human she is, taking her lead, staying strong and positive and being a team is important. 

Remember...WE HAVE HOPE!

Coach