My daughter was diagnosed in 2007 with acute lymphoblastic leukemia. She pulled through with God's help and so will Jedi . We knew many children that received bone marrow transfusions . They are all the best kids I've ever met . Love and happiness will help the speed of the healing process. Praying for Jedi and family !!!
Prayers for Nephew
- Thread starter MGMIAM
- Start date
MGMIAM
Gold $$ Contributor
To Him be the Glory
Journal entry by Dianna Schaller — 14 hours ago
The day finally arrived! Last night, at a few minutes before seven, Jedi bounced out of the room he was in for 38 straight days! The staff cheered, music played and Jedi rang the bell signaling the end of his inpatient BMT treatment. It was awesome and all praise goes to God for carrying Jedi and the rest of our family through this challenging time!
Patrick quickly drove Jedi and me to the hotel to meet the home health delivery man. Jedi needed to start his IV infusion right after discharge, so there was no relaxing. As I worked through the boxes and bags from home health Patrick went back to the hospital to clear out our room (which took a long time). We could have stayed at the hospital until today (and it would probably have been less rushed), but Jedi was so excited to get some fresh air!
Jedi needs an IV fluid bolus twice a day, IV antiviral medicine after that, tube feedings, and overnight IV hydration with magnesium. We have four different pumps to keep track of and I’m thankful they are all preprogrammed from home health. I noticed this morning that one of his lines was not giving a good blood return, so please help us pray that doesn’t become more of a problem. Jedi also needs medications by mouth that require timing in between meals, so that’s an extra challenge. He still hasn’t quite adjusted to the liquid medicine he has to take, so we have had to redo that one a few times. He also needs additional medicines crushed up, diluted and put through his NG tube. All of this, along with figuring out how to get him healthy food (that doesn’t upset his tummy) while in a hotel room, is an adjustment, but a welcome one!
The older boys are driving down here tonight and Brandon and Naomi are bringing our other boys tomorrow. We are so excited to be reunited!
We are planning to be in Madison for at least a month while Jedi has frequent outpatient follow up at the children’s hospital. We are praying that this will be a fun family time and that Jedi’s recovery will continue to move in a positive direction. Thank you all for praying for Jedi’s treatment and recovery! We are so blessed to have all of you supporting us. Most importantly we are blessed to have a Savior who “...is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
Ephesians 3:20-21
Read Moreof the journal titled "To Him be the Glory"
Music, signs, noisemakers...oh, my! This staff is the ...
The celebration parade!
After ringing the bell!
Can you see the huge smiles under our masks?
Getting settled in with his “wheel-y buddy”
timeout
Silver $$ Contributor
Praise be to God for his mercy upon Jedi and your family. Do be very careful with having visitors. Our daughters hair salon is in Madison and it is sounding like she may well be infected with coronavirus through a client she had on Monday. We stopped there briefly to say hi on Wednesday evening and at that time it was not known by any of us. Our daughter is sick now and was tested yesterday. Results of the test are not known yet. My wife and I are self quarantining until we figure this all out. Do be extremely cautious. None of us would want to have Jedi's health compromised by Covid!To Him be the Glory
Journal entry by Dianna Schaller — 14 hours ago
The day finally arrived! Last night, at a few minutes before seven, Jedi bounced out of the room he was in for 38 straight days! The staff cheered, music played and Jedi rang the bell signaling the end of his inpatient BMT treatment. It was awesome and all praise goes to God for carrying Jedi and the rest of our family through this challenging time!
Patrick quickly drove Jedi and me to the hotel to meet the home health delivery man. Jedi needed to start his IV infusion right after discharge, so there was no relaxing. As I worked through the boxes and bags from home health Patrick went back to the hospital to clear out our room (which took a long time). We could have stayed at the hospital until today (and it would probably have been less rushed), but Jedi was so excited to get some fresh air!
Jedi needs an IV fluid bolus twice a day, IV antiviral medicine after that, tube feedings, and overnight IV hydration with magnesium. We have four different pumps to keep track of and I’m thankful they are all preprogrammed from home health. I noticed this morning that one of his lines was not giving a good blood return, so please help us pray that doesn’t become more of a problem. Jedi also needs medications by mouth that require timing in between meals, so that’s an extra challenge. He still hasn’t quite adjusted to the liquid medicine he has to take, so we have had to redo that one a few times. He also needs additional medicines crushed up, diluted and put through his NG tube. All of this, along with figuring out how to get him healthy food (that doesn’t upset his tummy) while in a hotel room, is an adjustment, but a welcome one!
The older boys are driving down here tonight and Brandon and Naomi are bringing our other boys tomorrow. We are so excited to be reunited!
We are planning to be in Madison for at least a month while Jedi has frequent outpatient follow up at the children’s hospital. We are praying that this will be a fun family time and that Jedi’s recovery will continue to move in a positive direction. Thank you all for praying for Jedi’s treatment and recovery! We are so blessed to have all of you supporting us. Most importantly we are blessed to have a Savior who “...is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
Ephesians 3:20-21
Read Moreof the journal titled "To Him be the Glory"
Music, signs, noisemakers...oh, my! This staff is the ...
The celebration parade!
After ringing the bell!
Can you see the huge smiles under our masks?
Getting settled in with his “wheel-y buddy”
MGMIAM
Gold $$ Contributor
An awesome Christmas gift
Watching the virtual Immanuel children’s Christmas program. Pictured here is our kiddo’s special part that we filmed prior to Jedi’s transplant
Hello all! The days since Jedi’s discharge from the hospital have passed in a whirlwind of medicines, clinic visits, games with brothers, visiting with our Schaller family, snuggles and laughs. Being back together as a family is truly the best Christmas gift we received this year! Thank you, Lord!
Jedi has been to the clinic three times since discharge: once for labs only, once to see the doctor and more labs, and once for a Cytogam (CMV specific IVIG) infusion. Jedi’s counts continue to trend upwards and his transplant doctor is very happy with the progress. WBC is at 3.4, Platelets at 190k, and ANC is 2760. His CMV level has decreased slightly to 1100, so the plan is to continue on the IV antiviral medicine twice daily and the Cytogam once weekly until it’s undetectable. We are praying that his body will continue to produce those cells that will learn how to fight the CMV.
Jedi is eating a bit better, but still not great, so we are continuing the nighttime NG tube feedings to supplement his calories. He wants to get stronger, so he asks to take the stairs at the hotel sometimes (we are on the 4th floor) and he takes walks with his brothers in the hallway.
I have noticed since his platelets have come back up (and he’s off the Lovenox) his central line has been having a bit more trouble getting blood return. I have been able to flush both sides each time, so it hasn’t been an issue with the infusions. Tonight I couldn’t get one side to even flush, but after some time and repositioning it finally went in. Please help us pray that his lines cooperate through the weekend so we don’t have to go into the ER
We return on Monday and Wednesday next week for more labs and another doctor visit. Until then we are praying for an uneventful medical weekend and lots of great family time for Christmas!
We wish you a most blessed holiday celebrating the best Christmas gift ever...the birth of our Savior!
“Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.” Luke 2:11-14
Great news. Hope he continues on the road to recovery and God bless you all.
MGMIAM
Gold $$ Contributor
Happy Sunday morning! I’m sitting here in the “study” at the hotel waiting for our boys to wake up. Jedi has already been up, taken his “empty stomach” medicine, and gone back to sleep.
A small note on where we are staying...this hotel is actually owned by the hospital, so we worked with the guest housing director to solidify the plans for our stay. Since we need to be here so long (and COViD had shut down all the public spaces) the director authorized our family to use this space to be together during the daytime. Boy, has this been a blessing from above! The space is large enough for us to all just relax, play games, watch movies and even cook food. My amazing mother- and father-in-law really helped us organize the “kitchen” area, so it is easy to find things when you need them. Every morning I wake up I am so thankful that we are able to all be together!
Christmas day was filled with online church service, good food sent over from the Ronald McDonald house (a truly amazing charity) and gifts given to us from a traveling volleyball league and another family that “adopted” our family for Christmas. We were overjoyed and relieved that we didn’t need to get a bunch of stuff ready for Christmas and yet the boys had amazing presents to open. Patrick’s parents also put together little “boot stockings” for each of the boys and treats for us. So many blessings abound and we are truly grateful for each one! Thank you to all who have send mail and packages to our new “home”!
Jedi has been doing really good overall. He walked over a half mile outside yesterday (he is such a little trooper). Unfortunately on Christmas he had a strong vomiting episode that caused his NG tube to come out. I removed it the rest of the way and then began the debate of bringing him in to have another one placed. We talked about it with him and decided that he would try to take all his medicines orally and that we would place the nighttime nutrition on hold for the time being. The first day was rough and it took him hours to take his medicine (he has a lot of them and his gag reflex is very sensitive). He ate fairly decent, so we decided to give it another day. Yesterday he ate even better and his medicine-taking time was slightly less (although still quite a while in the morning). We are praying each day gets a little better and that he can get enough nutrition without having the tube feedings.
Tomorrow morning we go back in for lab tests. We’ll check his counts, CMV level and cyclosporine level. I’m excited to see where he is at. Last week he had chimerism testing to see how many donor cells he has circulating versus his own cells. I’m hoping to get an explanation of the results tomorrow and I will share them with you all.
We pray you all had a blessed Christmas filled with hope, joy, love and peace! That is also our prayer for all of you as we move closer to the new year!
Love from the Schallers
“I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people...not only in the present age but also in the one to come.”
Ephesians 1:18, 21b
A small note on where we are staying...this hotel is actually owned by the hospital, so we worked with the guest housing director to solidify the plans for our stay. Since we need to be here so long (and COViD had shut down all the public spaces) the director authorized our family to use this space to be together during the daytime. Boy, has this been a blessing from above! The space is large enough for us to all just relax, play games, watch movies and even cook food. My amazing mother- and father-in-law really helped us organize the “kitchen” area, so it is easy to find things when you need them. Every morning I wake up I am so thankful that we are able to all be together!
Christmas day was filled with online church service, good food sent over from the Ronald McDonald house (a truly amazing charity) and gifts given to us from a traveling volleyball league and another family that “adopted” our family for Christmas. We were overjoyed and relieved that we didn’t need to get a bunch of stuff ready for Christmas and yet the boys had amazing presents to open. Patrick’s parents also put together little “boot stockings” for each of the boys and treats for us. So many blessings abound and we are truly grateful for each one! Thank you to all who have send mail and packages to our new “home”!
Jedi has been doing really good overall. He walked over a half mile outside yesterday (he is such a little trooper). Unfortunately on Christmas he had a strong vomiting episode that caused his NG tube to come out. I removed it the rest of the way and then began the debate of bringing him in to have another one placed. We talked about it with him and decided that he would try to take all his medicines orally and that we would place the nighttime nutrition on hold for the time being. The first day was rough and it took him hours to take his medicine (he has a lot of them and his gag reflex is very sensitive). He ate fairly decent, so we decided to give it another day. Yesterday he ate even better and his medicine-taking time was slightly less (although still quite a while in the morning). We are praying each day gets a little better and that he can get enough nutrition without having the tube feedings.
Tomorrow morning we go back in for lab tests. We’ll check his counts, CMV level and cyclosporine level. I’m excited to see where he is at. Last week he had chimerism testing to see how many donor cells he has circulating versus his own cells. I’m hoping to get an explanation of the results tomorrow and I will share them with you all.
We pray you all had a blessed Christmas filled with hope, joy, love and peace! That is also our prayer for all of you as we move closer to the new year!
Love from the Schallers
“I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people...not only in the present age but also in the one to come.”
Ephesians 1:18, 21b
butchlambert
Site $$ Sponsor
I just love that little man!
MGMIAM
Gold $$ Contributor
He goes before us
Today we needed to be at the clinic by 7:30 am for Jedi’s Cytogam infusion, so that kind of set the tone for the morning. Jedi is not an early riser because, first, he is usually tired and somewhat nauseous in the morning and, second, he knows he has to take medicine when he gets up (not his favorite). On the way to the clinic I realized my alarm did not go off to remind me to grab two of his medicines, so Patrick needed to drive back to get them. Thankfully we are staying only about 5 min from the clinic. First thing into his appointment we found out he had lost 3.5 pounds since last week. I was not happy about that Then his lines wouldn’t get good blood return, so it took forever and lots of repositioning (of a very tired kid) to eek out a few mls of blood. When his labs came back we found out his creatinine had doubled since Monday! His LDH is trending upward and his ferritin level is elevated again. Oh, and that mag level we have been chasing? It dropped again significantly from Monday. When we finally convinced a very sleepy Jedi to start taking his morning medicines (at about 10 am) he threw up twice and had to repeat a couple. It was a rough time of it, but he got his infusion, got both lines TPA-ed (they flush and draw so smooth now), got all of the medicines down and made it back to the rest of the family by 12:30pm.Whew, enough with the meh news...on a positive note Jedi’s CBC was stable from Monday. Praise the Lord! We got his CMV level back and it is down slightly so we are thankful it is trending in the right direction! He is eating more, but clearly not enough calories to maintain his weight. We kind of expected his weight to go down a bit since we had stopped there overnight feeding, but we were not expecting quite so much. We are working with the dietician and have a plan to get more calorie dense foods into him. I think it went pretty good today overall.
This afternoon his cyclosporine level came back high, so we had to stop that tonight and will resume at a lower dose in the morning. Because he had some wonky labs we need to come in on the holiday to the heme/onc floor to check his labs and if they are not better then he will be admitted. In the meantime, we have added back the overnight hydration with magnesium. We are praying so hard that with the extra hydration and lowering the cyclosporine dose his creatinine will come down on Friday so we don’t have to be admitted. We also continue to pray that his counts go up and that no other complications arise as his body heals from the transplant.
We are blessed to have more family visiting us this week! We know it is not easy to isolate from other family and friends, but that is what they do to be able to visit with Jedi and keep him safe. Since we don’t get to physically see many people we are thankful for them and the visits!
Thank you all for joining us in the specific prayers for this week. I will check in and update you with good news on Friday! Have a blessed new year!
“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.””
Deuteronomy 31:8 NIV
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