Hope's Journey

Pass...

Posted Jan 25, 2017 2:46pm

After four months of Hope being on the transplant waiting list, we received a call yesterday with a possible organ offer. Unfortunately, after much back and forth phone calls, we had to pass/decline due to an upper respiratory/lung infection that Hope is currently being treated for (the start of pneumonia).

Although this was the first call we received, apparently, Hope's name has come up with potential matches numerous times over the past 4 months. Dr. Matsumoto has been declining on our behalf while waiting for the PERFECT match. We are all encouraged by the frequency in which her name comes up even though we had to pass this time. Hopefully, next time, it will be a perfect match AND Hope will be well enough.

(Hope is now determined to hang on to this lung infection until summer in order to attend YMCA Camp Ocoee in Tennessee! Joking of course...or at least I think she is.)

We have decided that this was a great "DRY RUN". It helped us in several ways:

1 - This is REALLY going to happen! It has been easy to forget that this is really going to happen because we are all wrapped up in daily living - work, school, coaching, swim team, friends, etc. And Hope is stable and (relatively) well.

2 - We need a plan! We thought we were prepared... we are NOT! We will be working on a family plan this weekend in order to be "ready" next time we receive THE CALL! And Rob and I will be working on our respective work/coaching plans in order to make sure all of those bases are covered too. It's been 4 months since we had our initial plans, and they are out of date!

3 - Regardless of having to PASS on the organ offer, this is EMOTIONAL (for all of us)! It took some time to recover (maybe still working on this) from the wide range of emotions we experienced yesterday. It's literally impossible to explain - Hope tried to tell us whether her tears were of joy, happiness, fear, disappointment, anger, etc and all she could come up with is "I don't know!!!... it's just stressful and emotional". I agree!

We will continue to wait for the PERFECT match and the RIGHT time...

LOVE TO YOU ALL!


THREE Months & Still Waiting...

Posted Dec 22, 2016 4:53pm

TODAY marks THREE months of Hope being on the transplant list.

As we approach the most joyous season, we celebrate the gifts in our lives!

One of those gifts is... we are happy to be waiting at home for Hope's transplant. It allows all of us a 'normal' life for now.

Since we can't really travel during this waiting period, we loved hosting my side of the family for a fun-filled Thanksgiving with a packed house! We are looking forward to Rob's family to arrive soon for Christmas! We are thankful for the gift of our families!

We were also fortunate to have Rob's cousin - Gino and his wife Missy, from NY - with us for some time as they have adopted an OH SO SWEET baby from a family in our area. His name is Gino, but we call him "LG" for Little Gino and Hope & Hannah call him "G-Money". We were truly honored to be part of this beautiful and amazing gift of life!

Speaking of gifts of life - On 12/10, Hannah turned 16! She has brought such joy to our lives and has a wonderful heart! We have SO MUCH love for her. She invited some of her close friends for dinner at a great little Gastro Pub here in town and then we went back to the house for a perfect chocolate cake (from Publix - as if I'd bake a cake). We purchased a 2005 Ford Explorer for her to drive once she gets her license - she's an excellent driver.

Both of the girls are doing fairly well in school and are glad to be off for Christmas break. Rob still enjoys his job and is also glad to be off for the break, but is excited for Lacrosse season to start in January. My Y is having a GREAT year and we are looking forward to an even better 2017!

Thank you for your gifts of support, prayer, and LOVE!


Just keep waiting... just keep waiting...

Posted Nov 3, 2016 5:02pm

I know many of you have been wondering what's going on with Hope, so here's a quick update:

We are in "just keep waiting" mode. Other than monthly blood work, we are not in regular communication with the team in DC. We have appointments every 3 months, until her transplant, in Atlanta with the Liver Transplant doctors there. Other than being tired a lot, she is enjoying a "normal" life for now.

She is going to school and loves spending time with her friends. She and Hannah both had a group of friends over for Trick or Treating on Monday. Hannah was Alice from Alice and Wonderland and Hope was the Joker from Suicide Squad.

Since we can't really travel outside of a 2-hour radius, we will be hosting my side of our family for Thanksgiving this year! And if Hope still hasn't had her transplant by then, we plan to host Christmas with Rob's side of the family as well. We wish you all have a wonderful Thanksgiving filled with food, family, and many blessings! We have so much to be thankful for - we count each of you among them.


Quick update...

Posted Sep 29, 2016 2:04pm

It's a good week:

1 - Hope's PELD Score was 31 without extra points considered, so they will leave her at 31 unless her internal bleeding increases.

2 - We received word today that our insurance company has approved Hope's transplant.

3 - My friend Jim Walters has offered to take care of our transportation (in his private jet) when we get the call!

Thanks for the love and support!
 


LISTED!

Posted Sep 22, 2016 6:59pm

Hope was put on the national transplant list TODAY!

Her PELD score is low, but they have requested additional points to get her to a score of 30. It will take about 10 days for that to be approved. Now we have to work on transportation to DC for when we get the call... but I think we'll celebrate first!


Trip to meet Dr. Matsumoto

Posted Sep 15, 2016 4:02pm

Melissa (my sister) and I made the trip to DC and met with the doctors regarding their final recommendation yesterday afternoon. Rob was able to join the meeting by phone.

RECOMMENDATION:

They would like to list Hope on the national transplant list for a multi-visceral transplant. This would include liver, small bowel, stomach, pancreas, and colon (they will remove her spleen). Dr. Matsumoto, the transplant surgeon who Melissa calls a BAD A**, wanted to accomplish two things during our meeting - #1 - Make sure everyone knows WHY they are recommending such a significant surgery for Hope AND #2 - Make sure we understand how different this transplant is compared to her previous "isolated liver transplant".

If you want more details feel free to continue reading the section below. If not, just know that we were very impressed with Dr. BAD A**! They are finalizing a few additional blood tests and then will add her to the list next week. Since she's able to wait at home, for now, she will continue her life as normal.

#1 - Why are we doing this!

* This discussion was mostly a review for us, as we have spoken with many doctors so far regarding her current situation and what alternatives are available. However, we felt like Dr. Matsumoto was able to explain Hope's situation with such detail, which was reassuring.

* Hope's problem right now is a "plumbing problem" as all of her organs are actually functioning normally. However, because of the clotting issues, the blood is not flowing appropriately to support her system long-term and is causing massive internal bleeding (which can be life threatening). The alternatives that they usually explore are not available for Hope due to her anatomy.

* This surgery will essentially replace ALL of her lower system (including the organs and all the plumbing). He described it like replacing your car transmission (as it has many parts, but is bundled altogether).

* This type of surgery only happens about 20 times a year throughout the country. It is a big deal and not very many centers do them - mostly because of the intense post-care treatment and follow-up.

#2 - What to expect for a Multi-visceral transplant as compared to isolated liver transplant!

* They kept referring to her previous transplant as "JUST an isolated liver transplant" and after an hour and a half of talking about it - we get it! The after care, short-term risks and long-term risks are much more significant than her liver only.

* What to expect in terms of the timeline:

Waiting - who knows! - the average wait time on the list for this type of transplant is between 3-6 months. Once we receive the call for her "offer", we will have to high tail it to DC and they will have her in surgery within 12 hours.

Transplant Surgery - will last between 8-10 hours and they will be prepared for up to 100 units of blood transfusion. They can keep the "offer on ice" for up to 10 hours.

Phase 1 Post Tx - Depending on how she's doing, she will be in the hospital for 3-4 weeks after her tx. She will have a stoma bag and G-Tube post surgery. Hopefully, she will be able to begin eating some easily digestible foods during this time.

Phase 2 Post Tx - after discharge, the next 1-2 weeks, she needs to remain CLOSE to the hospital - within a few minutes to get there. Continue to work on her food intake.

Phase 3 Post Tx - for the next 3 months, she will need to be close to DC for bi-weekly follow-up appointments. Hopefully, remove the stoma bag (which is needed for the small bowel biopsies in order to monitor possible rejection).

Phase 4 Post Tx - She will be able to come home but not attend school or other activities that involve people. She will also be traveling pretty regularly to DC for follow-up visits. Hopefully, remove the G-Tube during one of these visits.

Phase 5 Post Tx - after about a year, resume her normal life and most of the follow-up care can be provided by the Atlanta doctors.

* Risks: There are a variety of risks including: long-term kidney problems, risk of diabetes, graft vs host disorder (GVHD) (which is where her new organs - which will have their own immune system - actually reject her body), and long-term problems related to the medications she will have to take (for the rest of her life) including PTLD which she had after her first transplant. Dr. Matsumoto's biggest concern is the graft vs host disorder - which he thinks Hope is even more at risk for due to her history. They will be very vigilant in keeping an eye out for potential symptoms (like skin rashes). This could effect her kidneys, the tissue surrounding the graft, her skin, etc. Early detection for GVHD is critical to avoid becoming life-threatening - hence the intense follow-up care plan.

For the first YEAR after transplant, HOPE and her CARE will be our top priority! We will be asking for support from family and friends in order to get through this. We couldn't do it without you!

Special THANK YOU, Melissa for going with me on this trip (and THANKS Mom for forcing me to have someone go with me)!


Transplant Recommendation

Posted Sep 9, 2016 10:24am

Happy FRIDAY!

We finally received a call from Rebecca (the Transplant Coordinator for Georgetown) late yesterday. They were able to discuss Hope's case and want to recommend putting her on the transplant list. They want to list her with 30 points (on a scale of -7 to 40 points with 40 being the highest). This will allow Hope to remain at home while waiting for her "offer". We think this is great news! If Hope has more frequent internal bleeding that requires transfusion, they will bump her up to 40 points, Status 1-B, and she will have to wait up there at the hospital. In the meantime, she will be able to attend school and enjoy a normal life.

Before they list her, I have to travel back up to DC to meet with Dr. Matsumoto (the transplant surgeon). I'm hoping to fly up on Monday afternoon and be back Tuesday night. Hope does not have to go with me and we will conference Rob in by phone. This should be the last step, so hopefully, she will be placed on the list sometime next week.

THANKS for all the support and love!


Hope's HOME

Posted Sep 6, 2016 5:30pm

Last week was a good week! We are sorry for the radio silence, but since Hope was released from the hospital last Thursday, she wanted to surprise everyone (her cousins, classmates, teachers), so she didn't want me to post an update until today. Here it goes...

* Last Thursday, the doctors were scheduled to discuss Hope's case and determine placement on the transplant list. Unfortunately, the surgeon, Dr. Matsumoto, had an emergency and could not attend the meeting. Since he MUST be in the meeting for the final recommendation, they postponed it until this Thursday (9/8). We will be waiting anxiously.

* In the meantime, the doctor on service, Dr. Yazigi, didn't see any reason to "keep Hope hostage" and discharged her (and gave me her cell phone number in case we need anything). Hope did not have any additional bleeding episodes, so she's stable for now, and we are scheduled to have blood work done weekly to keep track of her hemoglobin.

Since Hope got out on Thursday, Rob, Hannah and I drove up to get her. We were able to attend an amazing & beautiful wedding on Friday night in Baltimore and, even though it was last minute, they welcomed us and included us in all of the family wedding festivities - including the wedding ceremony and reception (Hannah and Hope too), staying at the family's house on Thursday and Saturday nights, booking us a hotel room for Saturday night, insisting we attend the family picnic on Saturday and the Orioles vs Yankee's baseball game Saturday night. We drove home on Sunday and had all of Labor day to spend time together, get re-settled, get haircuts and other necessary errands. And - even though she's home, we still have a lot to manage: Atlanta tomorrow for PICC line dressing change and blood work; I've GOT to get her to the Orthodontist ASAP since I've had to cancel the last 4 regular appointments, and the dentist (I'm not sure how much school she'll get in this week). We are uncertain how long Hope will be home, but we intend to enjoy every minute of it!

Thanks for all the support and prayers. Special THANKS to Uncle Randy, Nicholas & Ryan (who are hopefully having a fabulous Aruba honeymoon), Greg & Bobby Clemens and the entire Maiorini family!


Tuesday

Posted Aug 30, 2016 4:57pm

Today, we received final sign-off from Pulmonary and Anesthesia to complete her transplant evaluation. The doctors should be discussing her case at the Transplant Meeting on Thursday to add her to the list. We will know more at that time.

Earlier this week, Hope had another internal bleeding episode, however, her hemoglobin maintained above 8.0, and blood transfusion was not needed. We are hopeful that they may discharge her later this week (either back to GA or staying local in DC). Again - we should know more on Thursday.

Hope has started her own blog - feel free to visit: https://hopesjourneyweb.wordpress.com/


Super Saturday

Posted Aug 27, 2016 10:08pm

Hope's PET-CT scan came back clean - so that's good.

It has been a slow Saturday and nothing is scheduled for tomorrow either. Monday morning is a "simple upper scope" which will assist the surgeon on exactly where he will be able to attach her new organs (on the upper end) once she has her transplant.

We need final sign off from the Pulmonology Team and then her evaluation will be complete. They will "present her case for listing" at their transplant meeting on Thursday.

So far - no more internal bleeding. Discharge possibilities:

1 - NO more bleeding between now and next Thursday and they list her regular status on the tx list - possible release home to Georgia.

2 - NO more bleeding between now and next Thursday and they list her Status 1-B - possible release to Georgia OR local release - MUST stay locally (Ronald McDonald house, transplant housing, Rita's Uncle Randy's house or other housing option)

3 - Any level of bleeding before Thursday/Friday, they will for sure list her Status 1-B - Keep her inpatient until she receives her tx (which could be between 3-6 months)

Thomas went home today and Rita is in Baltimore (at her Uncle Randy's house) for the night and will come to the hospital tomorrow morning so Rob and I can get home. It BREAKS my HEART to leave her here (even though I know she'll be in good hands with Aunt Rita). It will be great to see Hannah, but tough to not have our whole family home together. I think Rob and I will be back on Thursday (maybe bringing Hannah with us).

We are hanging in and Hope has had an AMAZING attitude through all of this. We are working on a more routine schedule for her starting on Monday so she doesn't default into a poor hospital routine.

Thanks for all the sweet notes.


Fun Friday update...

Posted Aug 26, 2016 2:46pm

Hope had a great night and it's been a quiet day so far. She and her Uncle Thomas took a 1.5 mile walk around the school campus today - it's move-in day for many of the college students, so it's pretty busy. Thomas ran into a friend, Coach Ricky Fried who is the Georgetown Women's Lacrosse Coach. He told Hope that they would have some players come visit her sometime.

Hope's pulmonary tests came back abnormal, so they are waiting to get previous tests from UF Shands for comparison. It could just be residual effects from her 2008-2010 PTLD.

We expect it to be a quiet weekend. Hope's Aunt Rita is coming to town on Saturday night and will take over on Sunday. They will be here in Baltimore for a wedding next Friday night, so Rita was able to come early to stay with Hope. Rob and I will head home on Sunday to work Monday through Wednesday and will head back on Thursday. Hopefully, we will have an idea by then if Hope will be able to come home.

This message has been approved by Thomas Kienle. :)


Washington DC

Posted Aug 25, 2016 4:55pm

So, we have a LOT to update:

We received a call last Friday from MedStar Georgetown University Hospital's transplant coordinator informing us that Hope's insurance approved her referral from Atlanta. She asked us to arrange to come up for a week-long transplant evaluation as soon as possible. Hope, Rob and I drove up on Saturday and checked into the hospital on Sunday. (Rob's parents came up to Georgia to stay with Hannah while we're gone.)

Since we arrived we have had tests, procedures, blood work, doctor consults - which include:

Chest CT, Chest X-ray, ECG, Echo-cardiogram, Ultrasound of abdomen and kidneys, CT angio thorax, water-soluble enema (yes - it's as bad as it sounds), upper and lower GI scopes, liver biopsy, PET-CT scan and PFDs. Consults from the teams of doctors: Transplant Coordinator, Nutrition, Social Work, Nephrology, Pulmonary, Hematology, Child Life, Anesthesia, Infectious Disease and hopefully today - Surgery.

We were hoping to be heading home tomorrow (as normally that's the schedule). However, she has had an internal bleeding episode while we've been here. So Dr. Khan wants to try to get this bleeding under control or have an action plan for ongoing treatment. Also, since the bleeding required a blood transfusion, it set us back on the schedule by a day or two. As of today, they are keeping her at least another week. It's possible, if they're not comfortable that she is stable enough to go home, they may end up keeping her until transplant (which could be 3-6 months). It is our expectation that when we leave here, we will have a short and long term plan for Hope.

Regarding her long-term plan - her transplant will include liver, small-bowel, pancreas, stomach and colon (they will remove "Bob" - her spleen). Because of the internal bleeding, they will list her as "Status 1-B" which is the highest on the transplant list.

Please know that Hope's not in pain, but a little frustrated that she has to stay. Also, she has had to be NPO for many of these procedures and not being able to eat is tough for her.

Although it's difficult with the amount of uncertainty, we are working on logistics. In the meantime, thank you for the messages, support, and prayers!
 


HOME!

Posted Aug 16, 2016 1:09pm

Hope got home yesterday around 4:00 pm. Today she is back in school. Our hope is that she'll be out of the hospital for a few weeks. We are waiting to hear from Georgetown to schedule a week-long transplant evaluation that will happen within the next 3 weeks. She is such a trooper!

 

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