Month: February 2017

Friday afternoon we got a call back with wonderful news–the donor said yes! Is it a young man and he is even willing to donate some of his bone marrow!! God is so kind to us… Last time we were at OHSU we met a young woman who had a BMT done a year ago and looked great; when we asked about her experience she shared with us how she had a donor willing to give of his actual bone marrow not just his stem cells and how much of a difference that made. She told us how she found out later that her donor had wanted to help because that person had seen a loved one go through something similar. It isn’t an easy thing to donate bone marrow. First, it requires a bone marrow aspiration. To that young man who was willing to do this for a stranger–thank you! May God bless you for your sacrifice! Moreover, to the One and Only True God who is able to move mountains and the hearts of men –thank YOU!!! “Oh Lord, you prove your faithfulness to us over and over even though you don’t need to.”

Saturday, we all got to unplug from the stresses of life and drive out to the coast by the redwood forest! It was spectacular! We saw so much of God’s beauty in his creation: the river looked crystal clear–we could see the rocks beneath the surface, the sky was painted with spots of white clouds which covered the clear blue sky resembling the blue water with white dabs of foam from the waves over the coast, the redwoods shouted with brilliant green colors that made the forest come alive! It was like God was speaking to us and assuring us of his great faithfulness and love.

Sunday, we enjoyed a sweet time of fellowship with our church family. We are really going to miss everyone at our church while we’re gone. Lord willing, time will fly and this trial will soon be behind us. Until then, thank you all for being brave to journey this bumpy road with us in prayer and support as you carry our burden with us!

Thank you to all who have given to Josh’s medical fund. Quick update on financial/issuance issues: the insurance agent called and told us he’s pretty sure we will only pay up to our maximum out of pocket limit. Though we confirmed this with our insurance company over the phone with several other employees after one of them had told us otherwise, they still haven’t clearly shown us in writing. We hope and pray this will be cleared up soon. There are some other bumps we’ve come across as we work out logistics.

In addition, Josh feels like he’s coming down with a cold. If Josh is sick going into transplant it really won’t be good; he may need antibiotics or carry his illness with him through an already traumatic procedure as it is. Please continue to lift us all up in prayer! It is the only thing keeping us going. God is the only one sustaining us right now!

In God’s loving and powerful hands,

The Seibert’s

“Your judgments are like a great deep. O LORD, You preserve man and beast. How precious is Your lovingkindness, O God! And the children of men take refuge in the shadow of Your wings. They drink their fill of the abundance of Your house, And You give them to drink of the river of Your delights. For with You is the fountain of life; In Your light we see light.” Psalms 36:5-9

Our family has been very busy trying to prepare for Josh’s upcoming transplant! God has been preparing our hearts and the children’s. We praise and thank him for the blessings we see along this bumpy journey.

We had the opportunity to host a team from Germany that ‘happen’ to be doing a tour in the western part of states helping Fanconi Anemia (FA) patients screen for mouth cancers, as FA patients are more susceptible to head, mouth and throat cancers. It was a researcher named Ralf, his assistant named Lisa, and a dental student named Mona. They joined us for dinner and stayed the night at our home.  We had the chance to ask them lots of questions.  We were also touched by their story of how they ended up doing what they do. Ralf had two young daughters that he sadly lost to FA.  They were all very friendly and we enjoyed getting to know them and the different yet similar way of life in Germany. Noah was surprised that they also use cell phones like us!  Talking to them really helped us get an idea of what we’re fighting against and what to expect. This disease is brutal and has taken the lives of many in their youth.  The man in charge of the team lost his daughter very young after a transplant.

The team took a look at Josh’s mouth and said he looks very good! Praise God! We hope it stays that way even after bone marrow transplant (BMT)! They also looked at his numbers for hemoglobin, blood cells and platelets; and they were concerned about how they are steadily decreasing.  It’s good that Josh is having a BMT soon. The biggest concern is that his MDS may quickly turn into Acute Myeloid Leukemia (AML). AML is much more difficult to treat and is deadly.  Prayers for Josh’s disease not to progress are much appreciated!!!

We are waiting to hear back from OHSU on Josh’s donor in order to confirm the date for his BMT. Josh’s doctor put in a request that asked his donor to give some of his actual bone marrow and not just stem cells. So we are praying that God would move his heart to say yes! We pray and wait…

OHSU Tram

Our latest visit to OHSU was nicer in that we had more time to relax and not feel as pressured to go-go-go.  God is so kind and gracious! We only spend half the day at OHSU on Thursday which was very refreshing! Josh had really wanted to get together with one of his friends, and we got spend some time together by visiting his workplace and eating a late lunch there together. Thank you for treating us, Josh Simpson!

Later that evening we also got to celebrate our anniversary by having a romantic dinner at a restaurant on the 30th floor overlooking Portland. It was beautiful! Thanks, mom, and dad Seibert for your anniversary gift–we used it to eat there! The only downer to our lovely evening was accidentally getting stuck in an underground employee parking garage.  I thought I’d end up having a panic attack! …but instead, I prayed, got out of the car, and took a deep breath of fresh air.  We need prayers that I’d be tough!  Josh said God might be trying to help me toughen up.  I’ll probably laugh about this incident later. But for now, it was a good learning experience of being in a stressful situation and the importance of praying and staying calm.  Praise God for the Holy Spirit who gives us peace and help! We eventually did manage to ‘escape’ after about 5-10 minutes when an employee came in to park his car and let us out. There will surely be many highly stressful times during Josh’s treatment, so it was kind of like a little drill.

When we got back to the hotel, we were able to relax in the hot tub at our hotel. It was so amazing because we ended up getting to know the only two other families that came into the pool/spa area while we were there and they were both families who love the Lord! What are the odds, in Portland, for three Christian couples to meet at a spa at the same time! It was like a divine appointment! We intimately had a strong connection!  We got to pray with both of these families and were encouraged by one another.  They are both going through medical issues at OHSU so we lifted them up in prayer too. One of the husbands there was also a pastor and Josh enjoyed a long conversation with him.

Friday, we spent most of all day at the hospital.  We did get to ride the sky tram at OHSU in between appointments, just for fun. Also, we got a break long enough to drop some things off at the home we plan to stay in, and have a lunch date. We ate at a local diner, walked around with no rain and even some sunshine, and then went to a cute french pastry shop where we enjoyed gluten-free french pastries! Thank you, Juliet Kane, for the recommendations and for letting us visit!

Besides routine labs and check-ups, Josh got to see a physical therapist and his transplant doctor.  It was a good visit with his doctor, but she informed us that Josh’s blood counts were down dramatically and would need a blood transfusion. She reassured us that it would not negatively impact the transplant since he doesn’t have transfusions frequently. It was his first time ever having a blood transfusion so it was scary, but the doctor also told us Josh would feel much better and energized afterward– and he did!!

We were both so glad to stay two nights in Portland. Josh is at a point were he really must pace himself. Your continued prayers are much appreciated! They are aiming for admitting him in the hospital on March 9th.  Prayers for our sweet boys too! Noah turns 11 March 17th. Thank you Mike & Vicki Friend, Martin & Catherine Seybold, and Ralph & Becky Detloff for caring for the kids!!! We are so thankful to God for our loving church family for their grace while we come up to Portland for these visits and giving Josh a paid sick leave during treatment!

Thank you every single person who has prayed, helped watch the kids, given to our medical fund and/or followed our blog! Lastly, we ask that you would please pray for continued financial provision. We just found out our insurance requires we pay 30% of Josh’s costly transplant/hospital stay on top of the deductible, and possibly chemo or other specialty medications and expenses so we will need to raise more funds. We pray for God’s continued provision and a peace that surpasses all understanding.

“Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4-7  ESV

Just got word that they have picked Josh’s donor! It’s a 23-year-old male and a ‘perfect’ match! This is ideal!!! They wanted someone young! Josh will have the stem cells of a 23-year-old! Praising God for this new provision!

We will be driving up to OHSU tomorrow morning and staying in Portland for two nights.  Prayers for driving safety, peace while we see different medical teams, the children as they stay with friends, our time together as a couple, and opportunities to share the Hope that is in us!

Prayer update and request:

Praise God for his amazing provision throughout this difficult trail! God has been very kind to us and has been answering prayer!

The donor search has been narrowed down from 15,000 potential matches to two potential matches!  Prayers appreciated for the Lord’s hand and leading in the final steps of this process. I spoke with the lady in charge of Josh’s donor search and asked if either of these were “good” matches. She said both seem to be perfect matches but they need to be confirmed/tested.  They will be tested today and we should get results within 3-5 days. We pray for God to give wisdom to the staff at OHSU to pick the best donor.  Also, please pray for the individuals wherever he or she us–for his or her stem cells to be healthy and that God would use this not only to bless Josh and our family by saving his life; but also to bless the donor. We hope to meet the person one day and thank him or her.  It could be someone from another part of the world! We are thankful for good news! We also continue to pray that Josh’s blood counts will NOT drop any lower as they are already very low.  If Josh needs a blood transfusion prior to his transplant it could negatively impact the outcome of the transplant.

We are so thankful for your love, prayers, and support! We really appreciate you lifting us up before God in prayer.

Love,

Erika

“Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.”

We have had so many good and perfect gifts rain down from heaven already! We received many sacrificial and generous gifts from family, friends, and brother and sisters in the faith–some of which we’ve never even met personally.  Recently, we received the gift of a home to stay rent-free only 10 minutes away from the hospital! A few days I posted about another gift we received in the form of good news from the medical staff regarding Josh disease and donor search.

Yesterday, as I was feeling overwhelmed with how I am going to care for Josh and the boys during the entire treatment up on Portland–we received another wonderful gift and answer to prayer… a sweet and mature young woman named Katelynn from Josh’s prior youth ministry in Arizona offered to be a live-in nanny for the boys only asking for room & board.  The boys spend much time with her over the three years we spend in Arizona. Nathan grew up with Katelynn.  We are very excited and thankful to her and her family for their willingness to called by God in this way.  It’s a ministry to our family that we pray the Lord blesses her and our children through.

Today was a beautiful day full of warm surprises! The boys and Erika enjoyed some time out in the sun, and we hadn’t seen it this warm since summer! It was almost 60 degrees and the sky was radiant (Psalm 19)!

This afternoon we got good news that part of Josh’s bone marrow results came back showing no increase in blast counts (abnormal cells)! This means that they are stable and not progressing! We still wait for the second part of the results which will tell the doctors what is happening with Josh’s mutated chromosomes, which we understand has to do with how his genetic disease (Fanconi Anemia) is affecting his MDS or bone marrow failure. Our sweet nurse coordinator Lisa said we would need to wait till next week to find out this second piece of the results puzzle. She has also said we’d need to wait till next week to find out the search results for Josh’s HLA typing, to see how many potential donor matches he has. Then later tonight she sent us an email stating excitingly that they got those results back and found about 15,000 potential matches!!!!! This is huge!! GOD IS SO GRACIOUS and KIND! We were told it could take months to find one potential match! When we found out the news we were moved to tears–somewhat with fear but mostly with joy!

Thank you for praying for God’s sustaining grace, and sharing in the joy of our thanksgiving to the Lord…for his mercies are new every morning!

As we end the day, while hearing frogs jumping about in our backyard, our hearts are overfilled with gladness.

“The heavens declare the glory of God and the sky above proclaims his handiwork. Day to day pours out speech and night to night reveals knowledge.” Psalms 19:1-2

It is so refreshing to hear some good news from the family! We were just informed that my dad, Servando’s cancer is only at stage one!!! We praise God for his care for him and protection! We pray daily for the Sandoval family’s health both physically and spiritually.  Servando will still likely need surgery. However, the cancer is small and slow moving so they told him he could potentially wait ten years from now to have cancer removed! He definitely does not want to wait that long! Dad was already so anxious to even hear what stage cancer he had and what his options were. It was cute because he showed up at his appointment a week early having confused the dates, and his doctor “happen” to be available to see him, even though he wasn’t supposed to be there! Praise God! His doctor gave him a month to think about his options.  We would ask for prayer for him to have wisdom and peace in making this decision.

For some news on Josh, we still must wait… and PRAY! Our prayer is that the MDS is not progressing quickly and we may be able to wait for the ‘perfect’ match donor; and/or that the ‘perfect’ match donor will be found quickly.  A perfect match does not mean an identical match, but it means that the match is ideal for Josh’s transplant to achieve our goal of destroying his old bone marrow and being replaced with the new one from the donor.

Many of you sweet friends and family have asked if you could sign up to be a donor. While you can’t directly be tested to be a donor for Josh, you may be added to the national registry at http://www.BetheMatch.com. There are some age requirements, but other than that it’s pretty simple, and it could save someone’s life! They merely have you mail a cotton swab sample of saliva from your check, and then contact you if and when a person like Josh is in need.  They also pay for everything including some compensation for time off work if you end up donating your stem cells. Who knows, it could even be for Josh himself!

We will keep you all posted on Josh’s bone marrow biopsy results as well as donor search results!

Love,

The Seibert’s