Update Archive - Old Updates

Please Visit - http://www.meetmason.com/blogfor all future updates, or you may click on the "Mason Updates" link on the left. July 15th, 2007 Hello Everyone! Thank you all for your faithful prayers, God has heard many of them and continues to show us that He answers even the smallest ones. Mason gave the nurses a run for their money last night. He was running fevers so they drew cultures to check for any infections or viruses. We should know more on those in the next day or two. He finally broke his fever at about 5am this morning so he was able to receive his much needed platelets. They have him on infusions of platelets to keep his level up above 75 - he was sitting in the low 20's and still loosing them so this has the nurses busy. Today he had a bone marrow aspiration done per Dr. Prasad's request since he was running fevers, he wants to check for any micro bacterial infections that might be hiding in the marrow. Please pray with us that these cultures will come back negative. As of right now he is getting high doses of antibiotics, about five of them actually, to help cover him. We need his white blood cells to increase so he can help combat any infections he may be harboring. His white blood was up today to 1.7 - Thank you Lord! Please pray the extra doses of GCSF will help increase his white blood. Thank you for your prayers regarding Mason's fluid, God has been answering them because Mason has been having really good output. Right now he still has the doctors concerned about fluid since he still is on so much and his lungs are still "infected". Please pray for protection for his kidneys as well since we are working them so much will all the diuretics. We are trusting in the power of prayer so please keep those prayers coming that God will continue to protect those lungs and help rid the fluid from Mason's body. We are still on the vent, but have weaned down to 40% oxygen. His pressure went back up to 10 and we need this to come down also to move closer to getting off the vent. Not much else has changed, we are still just waiting on cultures to come back so we know how to treat Mason. I apologize for being all over the place with explaining all the details, I am trying not to leave anything out and there is alot to keep track of. Thank you all for your call, emails, meals and especially your prayers. We are so thankful that God cares for us so much that He has surrounded us with so many loving people. Please keep the prayers coming and we will update tomorrow as we know more. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason July 14, 2007 Hello Everyone - I just wanted to send a really quick update so everyone knows how to pray. Mason is still on the vent and they've decided to leave the chest tube in for now. He is having some fluid issues and they want to make sure it can drain if it needs to. Becky talked to the Doc this morning and they think it might be GVH in his lungs. So they have started large amounts of steroid to try and combat it. They have also started him on another diuretic to try and keep fluid from taking over. Please continue to pray for three specific things for Mason. 1 - please pray God will continue to protect his lungs from fluid and/or any infection that may or may not be in there. 2 - pray that the heavy steroids will be the answer and we will see rapid improvement. 3 - pray that we will be able to start lowering the vent settings and get him off completely. They are worried about a long stay on the vent. Thank you all again for everything you have done for us. God has really used you in touching our family and showing us He is at work. We love and miss you all! In His Love & Care, Eddie, Becky, Jazzy & Mason. July 12th, 2007 Hello Family & Friends! Thank you all for your prayers... God hears them and answers them. Mason finally got into surgery today around 3pm, after being NPO for 28 hours he was a little cranky. But despite being without food or drink for so long, Mason was doing amazingly well handling it all and we know WHO was responsible for that - thank you Lord! We know you were all praying for Mason and we felt it and saw it first hand. Mason's surgery went really well. He sedated quickly and had no difficulty breathing during the surgery. Dr. Rice said he got a good sample and it has already been sent off to the labs for biopsy. Mason is in PICU on the ventilator and resting very comfortably. He has been given a sedation drip and a pain med drip to help him handle having the chest tube in and to allow him to rest. Eddie and I just got back to the room on 5200 from seeing him and he looks like he is resting very well and all of levels looked really good. It of course is always a little difficult to see him on the ventilator, but we also know he needs to be sedated while we wait to see what the drainage in the chest tube is doing from his lungs. There was some bleeding, which was expected, but we are praying that God will keep his lungs strong and halt any bleeding or leaking. We are praying that God will give us wisdom on the biopsies that have been sent off. They should take up to a week to grow. Eddie and I are so thankful to each of you who have come by to pray with us and encourage us and feed us. Thank you to all of you who have faithfully lifted Mason and our family up in prayer each day, we truly have been strengthened and encouraged by all of you. We hope to send another update tomorrow after we know how he did through the night. Thank you all for your prayers, keep them coming. Sending all of our love and hugs to you! In His Love & Care Eddie, Becky, Jazzy & Mason July 11th, 2007 Hello Family & Friends! Mason's had a CT scan yesterday which showed signs of significant infection in his left lung and some in his right lung. This CT scan has confirmed Mason needs the lung biopsy so we can culture the cells and determine what type of infection it might be so we can treat it accordingly. Today Mason has required even more oxygen than the day before. He is on 4 liters via his nose cannula, plus full blow-by and will still dip down below 90%. The doctors have decided to have him be NPO (no food or drink) as of 11:00am this afternoon. His lung biopsy is not scheduled until sometime late morning, early afternoon tomorrow (Thursday). Needless to say, Mason is already cranky about being NPO - by the time we get to surgery he will probably be NPO for 24 hours. Please pray that Mason will be able to rest tonight despite his wanting his bottles of milk. Please pray God will strengthen his lungs and guide the doctors to where they need to pull the biopsy from. We are praying Mason will not need to be intubated prior to the surgery like the doctors are contemplating since he is having significant deSAT issues. We cannot tell you how much all of your prayers, encouraging emails and phone calls have meant to us. We are already feeling the power of God's strength and peace that you all have been praying for us. We will continue to pray and believe in the healing power of Jesus. We are praying God will heal Mason from this infection. Thank you all for your faithful prayers and encouraging us during this time. It is difficult to see Mason so sick so far out from transplant, but we know and trust in God's faithfulness to "never leave us nor forsake us" and He is demonstrating this through each of you. Thank you all and we hope to update as soon as we can tomorrow after Mason's surgery. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason July 10th, 2007 Hello Family & Friends! Yesterday (Monday) was a really busy day for Mason and alot has changed for him. He was visited by Dr. Prasad, his primary Bone Marrow doctor, he was visited by a Cardiologist, he received a visit from Dr. Rice from the surgeon team and he received a visit from Dr. Martin who is on rotation on the unit for the Bone Marrow team. Not to mention his normal visits from respiratory to receive his breathing treatments every four hours. Needless to say, Mason has everyone pretty concerned. He is on more oxygen than he was when first admitted last Monday. He was on 2 liters via the nose cannula and it has now been increased to 3 1/2 liters. All the tests so far from the Bronchoscopy has come back negative which is a blessing, but also leads us to no answers. Because of Mason's slow deterioration on his oxygen levels the doctors have been trying to rule out all types of possibilities, but have been getting no where. The Cardiologist cleared him stating it wasn't his heart, the Bronch hasn't shown any infections, the chest x-rays and CT scans have not shown any infections as well. So this leads us the next step to try and find answers so we can treat whatever is going on with Mason. The next step for Mason is an open lung biopsy. This is a pretty invasive procedure for Mason and it is one we wanted to avoid, but at this point we can't just sit by and watch Mason continue to get sicker. Dr. Rice from the surgeon team explained that the lung biopsy includes putting Mason under sedation and putting a chest tube in while they go in and snip a section of his lung to biopsy it. It will have a gauntlet of tests run on it to see what may be the cause of Mason's desaturation issues. Besides not wanting Mason to have to go under sedation again, we hate the idea of him being placed on a ventilator. Unfortunately, this procedure has risks which we cannot ignore in addition to the two I just listed. He could have risk of bleeding and or leaking from his lungs post- surgery. He could also not be strong enough to breath on his own to get off the ventilator. Mason has been having issues with holding onto his blood and platelets so we are trying to pump him full of blood and platelets prior to his procedure so we could help combat any bleeding. The procedure is scheduled for Thursday as of right now. Please pray with us that God will continue to protect Mason's lungs from bleeding and any heavy trauma through the procedure. Pray that God will strengthen his lungs so he will be able to come off the ventilator quickly. This procedure does require a nights stay in the PICU and maybe more depending on how Mason responds to the sedation and ventilator. Please pray for Eddie and I to lean on Jesus and to put our trust in Him and not look to our own strengths and understanding of this situation. Please pray for wisdom and guidance for the doctors. As you can imagine we are concerned for our lil guy, but we are also aware that God has used many of these "scary situations" with Mason to strengthen us in our faith and to encourage others and to bring much glory to Him. Thank you all for your faithfulness in prayer, for the love you continue to show us. We love you and will update as soon as we can. In His Love & Care Eddie, Becky, Jazzy & Mason June 8th, 2007 Hello Family & Friends! Mason is still pluggin along on 5200 and and still on his nose cannula for oxygen. As Eddie wrote in his update, the Bronchoscopy went really well and now we are just waiting for the results to start coming in. Mason's fever that he was running has subsided - thank you Lord! Overall though, Mason has us concerned, he feels just lousy and acts lethargic. He did need blood yesterday since his blood levels were below he parameter of 8. We are hoping all of his sleepy, lethargic behavior is just from the constant doses of Benadryl he is getting before all of his IV meds. He is on the antibiotic Vancomyacin every 6 hours and this requires Bendryl before he gets it since he has had a reaction to this drug. He also received the IV doses of Pentamidine (helps combat pneumonia) and he also requires Benadryl before it. To top it off he also get pre-medicated with Benadryl before receiving blood - so of course he has been one sleepy guy! Not only has he acted like he feels lousy, he just can't seem to get comfortable enough to sleep, so his sleeping has been out of whack. He has stayed up literally ALL night lately, then of course he wants to nap during the day when he gets his Benadryl. Please pray with us that his sleeping patterns will get back to normal. Eddie and I have been trying to get on a schedule with him so we are not so worn out. I just talked to Eddie this morning and Mason pulled another one of his up all night stunts and not to mention has been puking up some of his meds. They had started Mason on a new med, Septra which is also preventive drug to help combat pneumonia, but it hasn't been settling with him well. So we switched him over to the IV dose today to see how it goes. We have been trying to watch how much fluid we give him since lil man has a hard time releasing excess fluid from his IV meds. Excess fluid means excess weight and trouble with his oxygen SATs so please continue to pray that Mason will not retain fluid from all of the IV meds he is on. We have been so appreciative to all of you who have been thinking of and praying for Mason. Thank you Tammie and Ed for the delicious dinner and goodies last night, they were thoroughly enjoyed! Thank you all for the love you continue to show us, we are encouraged greatly. We'll keep you all posted as we know more. Sending our love and hugs to everyone! In His Love & Care Eddie, Becky, Jazzy & Mason Hello Everyone! Well Becky has Mason duty tonight so it looks like I'm Captain Update. Mason is doing very well after his bronchoscopy today. The Docs are happy with how it went and so are we. As most of you know Mason does not normally sedate very well and waking up has always been a nightmare. I can tell you all for sure, all the prayers lifted up for Mason last night and today had a huge impact. Mason not only went down easily but he woke right up and had no lingering side effects at all. THANK YOU JESUS! They were able to get in and out without too much trauma to his lungs and it looks like they were able to get everything they needed for cultures. Now we wait. They said we might have some preliminary results within 48 hours but for the most part it will take about 2 weeks. When I left today at about 4 o'clock he was still on oxygen but very comfortable and enjoying a baba. As well as today went for our little man there is something new to pray about. After we got him back to his room on 5200 we noticed he had developed a fever. They have stared a regiment of antibiotics to try and head it off anything new. So please continue praying for Mason's lungs to get stronger, his fever to break and for the cultures to come back quickly. Today has been a good day all around. While we were waiting for Mason's procedure we were blessed enough to have two close friends come and sit with us. Thank you Lord for sending Miss Bernice and Miss Rachel to minister to us while we waited. Also thank you for Miss Wanda and Miss Stacey for praying for us and taking such good care of Jazzy. I don't think I have to tell you all how good it is to have Jazzy back. Two weeks is a very long time for one overly protective parent to be away from his overly clumsy daughter. But by God's grace she is back and in one piece. Thank you all again for all you have done and continue to do for us and Mason. It is such a huge blessing to know we have so many prayer worriers and supporters cheering us on. We love and miss you all. In His Love & Care, Eddie, Becky, Jazzy & Mason July 5th, 2007 Hello Family & Friends! Today has been quite the busy day for Mason. Mason is now on a nose cannula instead of just blow-by oxygen because he is de-sating more. Because he is still needing so much oxygen, we are beginning to look into other reasons for why he is not able to breathe without it. We had a upper GI study done today to check to see if he is experiencing acid reflux which then may be causing food or drink to aspirate into his lungs. This test is definitely not a fun one. He had to be without food or drink for four hours. Then they strapped Mason onto a board that rotates side to side. His arms were strapped above his head so he was mainly mad about that. Then we feed him a chalky contrast which we give to him in a bottle, what a mean trick. It took about 45 minutes and by the time we were done he was pretty wiped out from all the fussing he was doing. The doctor didn't see any acid reflux issues. So then we got back up to our room (yes, we are still on the unit) and he was finally getting a real bottle when the ultrasound technician came in. They performed an ultrasound of his chest and heart to make sure he does not have any fluid build up. We will hopefully hear tonight on how that looks. Since Wednesday we have noticed Mason is not feeling very good. He is looking pale and has been real sleepy and not wanting to do much. His appetite has decreased and he just looks a little lousy. He also acts like his tummy is in pain as if he is cramping again from the Norovirus. Overall, Mason is not a happy camper. He cannot get comfortable and even though he is sleepy, he is not sleeping very well. After seeing him feel even more lousy today the doctors have decided it is time for Mason to have a Bronchoscopy done. This procedure requires sedation, which of course we have tried to avoid at all cost. But Mason could be harboring some infection in his lungs that is not appearing on the CT scans and X-rays which is causing his oxygen issues. The Bronchoscopy will include injecting some sterile saline into his lungs then suctioning it out so they can draw cultures from his lungs. Please be praying with us that tomorrow Mason will be protected from any infection due to the scope being introduced into his body. Please pray with us that his lungs will be strong and the procedure will not cause bleeding of his lungs or for them to collapse. The procedure is at 10:00am and we will go in for pre-op about 8:30am. Depending on how much sedation he will need and how he handles it he will most likely be recovering in the PICU for observation. Please pray that Mason will not have difficulty being sedated, that we will not have breathing issues while being sedated. We hope to post an update tomorrow night (Friday) after his procedure. Thank you all for your faithful prayers and encouraging emails and letters. Please continue to lift our friends Sean and Kallie up as well as they continue down their difficult roads to recovery. Thank you again. We love you and are sending hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason July 3rd, 2007 Hello Family & Friends! Well, since we last updated, Mason has decided to go back up and visit his girlfriends up on the 5200 unit. Sorry for the lack of updates, but I left late Sunday afternoon and Mason was at home doing well. On Monday he went in to get platelets and his oxygen SATs were sitting at 82% since they could not get them to come up, they went ahead and readmitted him. Eddie called me Monday afternoon to tell me they were admitting them straight from clinic. God sent us an angel on Monday because He knew we needed one - thank you Wanda Rhoden Because of Wanda, Eddie was able to get a yummy dinner after getting admitted finally sometime after 8pm. Eddie was able to run home and get Mason's oral meds since they couldn't get them started for awhile as well as some other necessities like Mason's milk! That kid would not be happy not having his "Ba-Bas" (bottle). It was such a late night for Wanda and Eddie and Mason by the time it was all said and done with. Thank you God for handling all of the details because only He knows what they ALL are and can supply the need for each! I just returned tonight from Idaho with Jazzy and have not been able to see him yet since it is past midnight and he is finally getting some sleep and allowing Daddy to rest too. But Eddie says despite not wanting to be there, he is doing well. He is needing a little bit more oxygen on the blow-by than before. Please pray with us that God will give us wisdom on why Mason continues to de-sat with his oxygen. Dr. Prasad called in a Pulmonary doctor and he has already discussed several different courses of action with Mason. We need alot of wisdom and guidance here because some of the options are pretty invasive to try and get to the root of the problem to make sure it isn't a larger more serious condition that is getting overlooked. At this point we are still trying to get approved to run a pulse ox machine at home on him to monitor his oxygen levels and trying to get oxygen at home so we can get him off the unit. Right now the doctors feel there is no other reason for him to be there and this time around Mason is being really sensitive to everything because he doesn't want to be there. Jazzy and I will be heading up in the morning to see him - Jazzy is so excited to be able to see him and so am I. I am sure it will lift Mason and Daddy's spirits as well. Please continue to pray for strength for Mason and for protection against infection. Thank you all for your faithful prayers and for selfless acts of love and kindness that you show to us each and everyday. God is so good and gives us so many things to be thankful for every day! Sending our hugs and love to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 30th, 2007 Hello Y'all! Sorry for not updating sooner, yesterday we were released - thank you Lord! and it is always a little crazy getting meds lined up with pharmacy, home health and adjusting to the new schedule of meds. Mason did really well last night, he even slept for four hours in a row! I think he was exhausted from the constant interruptions you get while in the hospital. Since our insurance does not cover getting set up with oxygen or a pulse-ox machine to monitor his oxygen levels at home , we had an appt at the clinic today to monitor Mason. He is still sitting low on his oxygen levels, they bounce from 88% to 90%, ideally we like them at 95% and higher. But we were released yesterday despite his bouncing back and forth so we were not too concerned today when we saw it bouncing still. We will continue to give him his breathing treatments every four hours to help clear his airways to see if we can get his oxygen levels to improve. All of his labs came back good today other than his platelets were a little low. They have been slowly trending down all week and today were just slightly above his parameters before needing a transfusion. We are praying that he will not need platelets since he always has a hard time with the extra fluid and his weight goes up and his oxygen levels come down. We really don't need his oxygen levels to come down any further! Mason is so happy to be home. Yesterday when leaving the hospital he squealed with delight and clapped his hands together over and over, he was ready to leave. We got into the house and he immediately asked for his crib and blankie - so we all took a family nap! Although we love all of our girlfriends who took such great care of us and our buddy Andre, it is good to get Mason home. I think Eddie and I will be able to get some sleep once Jazzy is home too. I leave tomorrow night (Sunday) for Idaho and Jazzy and I will be back late Tuesday night. Although I'll only be in Idaho a day and a half, it will be good to touch down in Idaho, no matter how brief. I am so grateful to be able to go and get Sissy and bring her back here so we can all be together again. I hope to plan another trip out soon to take care of some business as planned, that is if Mason will let me :) Thank you all for your prayers, please continue to pray for Mason's friends Kallie and Sean. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 28th, 2007 2nd Update Hello Family & Friends! After meeting with the doctors this afternoon, Mason is scheduled to go home tomorrow if he can go through the night without oxygen. His CT scan of the abdomen and chest was clear - thank you Lord! They stopped the IV antibiotic Vancomyacin because no cultures have grown from his lines - thank you Lord! All morning and afternoon he has been sitting at about 94% without oxygen so we took him out in the hall to go "cruising" in the lil red car. He thought it was so much fun, I think he thought he was riding in the "big red car" from the Wiggles. He was going up and down the hall with Daddy pushing him saying "vroom" really loud - I was waiting for them to kick us off the unit for being so loud. The entire time we were cruising the hall with his mask on even, he was at 94% without oxygen so we feel he is doing much better. Thank you all for your prayers and encouraging emails, we love you all and will keep you posted on how the night goes. Please continue to pray for strength for Mason and for strength and protection from infection for our little friend Kallie girl. Sending hugs to you all! June 28th, 2007 Hello Family & Friends! Mason is still inpatient on 5200. Although we are still inpatient, he feels really good. He is still needing the blow-by oxygen, but not as much as Tuesday and Wednesday morning. He required the blow-by through the night last night, but is only dipping down to 88 & 89% instead of the 83% he was doing before. So we are seeing some improvement although I am not sure if it is enough for him to be discharged. We went down for a CT scan of his abdomen and chest yesterday afternoon just to make sure he doesn't have an infection that we are not aware of. We should hear something back on those tests today after the doctors make their rounds. We still haven't heard if his cultures are growing anything to indicate a line infection so we are hoping the fevers he was running was just viral related. He is fever free and feeling really good. Mason is still hamming it up for all of his girlfriends and loves getting the royal treatment from them all up here. At one point yesterday we had about 7 of the nurses in our room talking with Mason and laughing at him - he just loves all this attention. We keep reminding him that we can come and visit our girlfriends any time, but we don't need to come and check into a room to do it! His buddy Andre has been hangin with him and Mason has enjoyed seeing him again. Jazzy has been having a blast in Idaho so it was good that she was there and not here since she gets upset when Mason isn't "at home with us". We haven't told her Mason is back in the hospital so hopefully he will be out so I can leave on Sunday to go get Sissy from Idaho and bring her home. It would be great to have us all home together again. Please continue to pray for Mason's lungs to have the strength to get off the blow by oxygen. Please also pray for our friend Kallie as we just learned she is in the PICU back home at her hospital fighting an infection of some kind. Thank you all for your prayers and support. For those of you who dropped off items to donate for the yard sale benefit for Mason that I was going to come home for this weekend, thank you! Mason's Grammy and Papa are still going to hold it in Kuna on Friday and Saturday since some items had been dropped off for donation already so thank you for your willingness to help Mason. We hope to have the yard sale again at another date since we still have a storage unit full of items that I need to go through to sale, we'll keep y'all posted on when that will be. Thank you again for your prayers and we will keep you up to date on Mason as we know more later today. Sending hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 26th, 2007 Hello Family & Friends! Well Folks I am here to testify yet again the amazing ability God has to answer our specific prayers. He does hear them and responds, but He often responds in ways that are not our own ways. As many of you know Eddie and I feel that God has us here in Durham, NC for more than caring for Mason at Duke. We feel He has ministry opportunities for us here, so while He is caring for Mason here at Duke, He is also growing Eddie and I spiritually in the "work" He has for us in Durham. Eddie and I have prayed these past two years while here with Mason that God would continue to reveal His purposes to us so that we would "adjust" and join Him in His work that He wants to do through us... well folks needless to say, God has responded to these prayer requests in ways we would not have "hoped" for but of course His ways are always best. With all of that said, Eddie and I prayed together after we got Mason down for bed Monday night and I finished packing for my trip to Idaho. We asked God to continue to give us opportunities to be introduced to the transplant families here at Duke, well I am here to say God answered that one very quickly. Starting at 11:30pm Monday night Mason was labored in his breathing and running a temp of 102 - all of you transplant families out there know what this means... yep a visit to the BOP room, the "after hours emergent" care up at 5200 at Duke. What better way to meet new transplant families than to be back up on the bone marrow unit with them right? God does hear our prayers, but sometimes I wish he would listen to how I want Him to answer them :) So we got Mason checked in at 1:00am and everyone could see he was laboring in breathing and his temp was the highest I've seen it since being on the unit a year and a half ago at 102+. Mason's oxygen SATS were well under the 90% so he required blow by oxygen. Aside from these issues, Mason was a very alert, happy and playful guy for all the nurses. We could not believe he was running a fever and having such difficulty because his demeanor was telling us he was fine. So we followed protocol and drew blood cultures from all four central lines to test for any bacteria growing and started him on some hefty IV antibiotics. Around 4:00am he still kept sitting at below 90% on his oxygen so unfortunately we had to be officially admitted to 5200. Mason stayed up and partied with his Wiggles and his girlfriends until 6:00am this morning (Tuesday morning). For any of you looking to get some more energy in the day I highly recommend sucking on some oxygen, it wakes you right up! Mason was VERY awake and enjoying all the attention he was getting. By 6:00 this morning Eddie and I both knew I was not taking my trip to Idaho as planned, my flight was scheduled to leave at 9:00am. Mason and I finally fell asleep sometime between 6:30 and 7:00 and woke up at 9:00 when the X-ray technician came in to do a chest X-ray. The really strange thing about all of this is we were just at clinic on Monday from 2 - 6:00pm getting a chest x-ray and Debbie listened to him. His cough had worsened since Friday and with me leaving we wanted the peace of mind that Mason was ok. So we got the once over to be safe and he was feeling great. His viral battery from Friday came back negative and his CT of the sinuses still hadn't changed showing some sinusitis so we came home. His chest x-ray looked good so we had no major concerns. Mason gave us NO indicators that he wasn't feeling good until about 11:30pm when he was trying to go to sleep. I am just so grateful we have the unit to go to when things go awry in the wee hours of the morning. Dr. Praik was the doctor up on the unit today so we saw him and he feels it is probably viral, but we have to be on observation for at least 24 hours to see if his line cultures come back with anything. Dr. Prasad also came up to see him and listen to him, he too felt it was probably viral, but we have to be off of the blow by oxygen before we can go home. So tomorrow is Wednesday and we will be there all day and stay the night again. We can not be released until he has a full night with out the oxygen so we are asking that you pray with us that Wednesday night Mason will be without his blow by oxygen. I just left Eddie and him to come home and sleep (it is past midnight) and he was still needing the blow by oxygen. If it is off him for longer than 5 minutes he drops to about 83% - yikes! Aside from needing the oxygen, he is looking and feeling great. His temp is coming down and he is playing and eating like normal. We know each of you have been so faithful in your prayers for Mason so I am calling on all of my prayer warriors out there to KEEP THEM COMING! We need Mason back home so I can leave to go get Jazzy from Idaho and bring here home as planned. The best we could do on changing the flight last minute was for me to get in after midnight on Sunday the 1st so I could still be on Jazzy's return flight on Tuesday the 3rd. Needless to say the yard sale benefit for Mason has been rescheduled for now. Thank you all for your prayers for Mason's protection against infection and for his lungs to strengthen so he can get off the oxygen. We hope to give you another update Wednesday night after we see how he does. Sending our love and hugs from 5200 to all of you! In His Love & Care Eddie, Becky, Jazzy & Mason June 22nd, 2007 Hello Family & Friends! Mason's week has gone really well. On Tuesday Daddy returned from his trip to Idaho so needless to say Mason and I were very excited to see him. Unfortunately, Daddy came back with a cold so we did our best to isolate Mason from him, but I think he still got it. So on Friday we did a viral battery (nasal swab) on Mason to make sure he isn't carrying RSV or something. We should know the results on Monday. We also had our follow up CT scan of his sinuses on Friday and should hopefully know those results on Monday as well. Overall, Mason is doing and feeling really well. He still has some runny diapers that he is dealing with, but they have been a little less frequent. He has been taking the oral IVIG daily so I think it has been helping. His blood levels (red blood, platelets and white blood) all look really good. His chemistries are still good aside from needing potassium and mag here and there depending on how many runny diapers he has. The great news is we were weaned back to 2 mls twice a day on his steroids - thank you Lord! We have seen a big improvement in Mason's strength this week. He is starting to push his walker by himself and walk for longer periods. He is still dragging his right leg and turning his foot out, so he is still needing help with his strength, but we are just thrilled he is wanting to walk again! A new thing that Mason has found he loves this week is to be a drummer just like his Daddy. Eddie brought back Jazzy's small drum set from Idaho with him and set it up. Mason was so excited to sit and drum, he kept us busy walking to and from the playroom wanting to drum throughout the day. It is so good seeing him smiling from ear to ear - and of course Daddy is one proud Papa! I'll have to see if we can get some pictures posted of him playing - it is too cute. We will drop labs for Mason on Monday and be on call again depending on what his labs show and we are praying that everything will be good until our clinic day on Friday. Since Eddie will be running the show this week with Mason it would be nice if Mason didn't have to go to clinic so they can just chill at home. I leave for Idaho on Tuesday and yes I am very nervous about leaving my lil man. I haven't left him in over two years! Daddy is very capable of taking great care of him, I think Mommy just has a hard time being without them both. It will be good though to visit home and see all of our family and friends that I haven't seen since we left in May 2005. Plus Jazzy is still there and I can not wait to see her - I miss my pretty girl! It will be good to get home and take care of some things that have needed to be taken care of. I will also be running a yard sale to raise money for Mason over the weekend. Please pray that God will give Eddie the rest he needs to care for Mason and for protection for Mason against infection. Daddy is still trying to get over his cold so we need him all healthy before I leave. Thank you all for your prayers, we are so thankful for you all. Please continue to pray for all of our transplant friends and especially for our little buddy Sean. Sending hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 15th, 2007 Hello Family & Friends! Today was another scheduled clinic day for Mason to see Dr. Prasad. With Daddy and Sissy in Idaho I loaded Mason up and headed to clinic early to drop off labs. I thought I would be just two minutes so I parked in the drop off zone at the clinic and carryied Mason up to the fourth floor to drop labs and pick up his oral IVIG for the day. This way, I thought, we would be in and out and I would wait for Debbie to call telling me what Mason's labs showed for the day and head up to clinic later in the afternoon to be seen by Dr. Prasad. Well, we had a couple of unexpected blessings. We ran into our friends Braden and Ashtin who were here for a visit so we stopped to chat - it was great seeing them and both boys looked great! I then dropped the labs off and was waiting for the IVIG . I was told if we wanted to, Debbie and Dr. Prasad could see us. My arms were about to fall off holding Mr. 30 + lbs so of course I was going to do anything I could do to be able to set him down. Since he is not walking and holding himself up he is like carrying a big 30 lb bag of potatoes! Mason nd I were placed in the one of the exam rooms that he has had to have viral battery (nasal swabs) done before, so he recognized the room immediately and didn't want anything to do with it. I felt bad, but I had to put him down before I dropped him! So he fought me for a minute to lay on the bed, but once he figured out I wasn't going to hold him down so we could swab his nose, he calmed down. Mason was looking and feeling great so our visit with Dr. Prasad was very short. Mason even hammed it up for a few photos for Dr. Prasad and his camera. We decided to wean him back to 3 mls twice a day on his steroid - thank you Lord! So Mason and I headed back home to wait for them to call to see what his lab results were - this was our shortest visit to date, another unexpected blessing. I came home and hooked Mason up to his sodium phosphate and we went for a walk. Mason sure has enjoyed being able to go outside without his mask. The great news is that Mason's labs came back looking great again, aside from being low on some magnesium, all of his levels were where we like to see them. The bad news is his stool sample finally showed positive for Norovirus. This would explain some hit and miss runny diapers the past week. It has not been as out of control as it was when he first got it back in March so we are praying he will get over it quickly. His white blood is higher this time around so we are praying that it won't hang on for so long. Again I am reminded on how quickly things can change with Mason and how to take it one day at a time. Although our days are constantly changing based on Mason, I am thankful that my Heavenly Father remains the same. He is faithful, powerful, merciful and gracious and that will not change. Mason's demeanor is still really good, I think he misses Daddy and Sissy though. I went over to the East campus to walk the outside trail with him on Thursday and it is close to Jazzy's little preschool she attended. When we crossed the railroad tracks he started screaming "Sissy", it totally broke my heart, he thought we were going to pick up Sissy from school. He has done really well with having just Mommy to hang with. He has been a little sensitive about me leaving the room since Daddy and Sissy have been gone so I know he understands they are not here. So Mason and I have just been chillin together, playing play dough, coloring, watching movies, eating... and eating some more! The little guy can eat anyone under the table, he just doesn't stop. The good news is that he IS eating since so many kids post transplant have eating issues. I am just so thankful that it is rice chex cereal that he wants all day long and not the cheetos! Well, I better wrap it up, you sure can tell I've been deprived of adult conversation by the super long novel I just wrote. Thanks for hangin in there and putting up with my rambling. Thanks for checking in on little man, keep the prayers coming. God is so good and has given us so many wonderful friends and family that care for us and love us and you all mean the world to us. Thank you for your faithfulness in praying for Mason, please continue to pray for his little buddy Sean who had another surgery to remove more infection this week. Sean is so much like Mason, a strong, determined little guy that lights up a room whenever he is in it. Sending our hugs and love to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 8th, 2007 Hello Family & Friends! Today marks day T+595 for Mason - one year and 8 months post transplant and we are finally able to report he has good white blood, red blood and platelet levels - thank you Lord! His white blood has increased to 6.8 , his red blood is at 12 and his platelets are at 70! And the best news is his LDH level is down to 1300 - almost below the 1000 mark we want to see it at to show his hemolytic anemia is under control. The other fantastic news is that his liver enzymes are down a little bit - thank you Lord! So keep the prayers coming for the Lord hears them and He is answering them. From a numbers standpoint, he looked great today, not to mention his demeanor is great! However, when arriving at clinic today he decided to have crazy diapers so we decided to test his stool. We have sent it off to sample it to make sure it is not the Norovirus again. We are praying that it is NOT the Norovirus again, Mason took 9 weeks to get over it and he is just now this past week starting to get his strength back. We should have the results on the stool sample by Monday and we will let you know as soon as we get it back. We are praying that Mason's tummy just didn't tolerate a few new foods that were introduced to his diet. Overall, Mason is doing well, we are so pleased to see his little personality returning. He even tried to help administer his own oral meds this morning - it was pretty cute. He has been giggling at himself while riding in the car and he looks so adorable when he does this because he covers his little chubby hands over his mouth and giggles. He is his biggest fan! He still gives all of his girlfriends at clinic a cold shoulder by covering his hand over his eyes or just simply shuts his eyes so not to look at them. But I am hoping soon he will overcome this too just as he has overcome everything being "no". Mason had his first official outing this past week - yes his first outing after being isolated for almost two years! He was cleared to go outside without wearing his mask if it is not windy so we took him out and sat outside in the shade and had lunch. He really seemed to enjoy himself. I thought it was a perfect day and the temperature was just right for me, but after about 30 minutes I could tell he was getting a little warm so we packed up and headed for some air conditioning. Even though he is off the cyclosporine which caused massive hair growth all over his body, Mason still has his "fur coat" on him so he gets pretty warm. It was really nice though to be able to go outside and for him to be able to breathe without having to breathe through the hot mask - thank you Lord! God has given us so many blessings, especially these past few weeks with Mimi in town. We have felt like a family again being able to spend time together outside of the house and clinic. It's amazing how just the simple things of having lunch together as a family made us "feel normal" this week. God is so good! Thank you all for taking the time to check in on our little man and for your faithful prayers. We love you all and miss you. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason June 1st, 2007 Hello Family & Friends! Today was Mason's clinic day, but we did not see Dr. Prasad, we saw Dr. Parik instead. Usually when we don't see Dr. Prasad and see one of the other doctors we don't make any changes to his meds. Well, today we did make some changes due to Mason having some fluid issues. When we arrived to clinic his weight was up and his blood pressure was elevated so we gave him some lasix to help as well as we started his new IV dose of Micafugin (a new fungal med). We think the V-fend that he is on for fungal coverage is contributing to his elevated liver enzymes, they are still pretty high. So we are trying a new med to see if we can get it to come down. We also stopped one of his doses of the sodium phosphate that we are giving at home. It is a four hour infusion twice a day and I think at night he has a hard time getting rid of the extra fluid. We will start IV lasix at home over the weekend to see if this can help him get rid of excess fluid. Aside from elevated liver enzymes and a little cough (which may or may not be fluid related) Mason is doing really well. All of his chemistry levels and blood levels looked really good on Friday so we did not need to get anything else - thank you Lord! We will be giving him the Micafugin at home over the weekend so we have the weekend off from running labs and going to clinic - YIPEE!! Mason has been feeling alot better, he even wanted to participate for Jamie, his physical therapist on Wednesday. We had Jazzy helping to get his mind off of making him work and trying to make it about play time and what a big helper she was. Mason saw her stacking a tower with the blocks and he wanted to stand up and put some on the top! This was a very big deal since he has not wanted to bear weight on his legs since March! So we held him up under his armpits and he would put blocks up on top of the tower. Then he even asked to walk over to the couch where his stool was so he could climb up onto the couch - wow! Jamie and I were just looking at each other and asking "who is this kid?" He was a totally different Mason - well actually our old Mason is a better way to put it. We just hadn't seen that Mason in over two months so he was a little hard to recognize. So he took several steps while Jamie held him up under his arms and even stepped up to the stool so we could lay on the couch. We had been working on climbing up on his stool and totes back in March before he got sick with the Norovirus and before he was placed on steroids for the antibodies he is forming in his body. So needless to say, Wednesday was a very blessed day - thank you Lord! God is so good - He gave us such a great week with Mason's personality coming back and his strength coming back. Not only that, but Eddie and I have been able to take Jazzy swimming and spend some time with her since Mimi is still here and we have even had a few dates out just the two of us. Well, I guess that is it for now. I will keep you posted on Mason as we go in for clinic. We go in on Monday to check his weight and breathing to see if the lasix are helping. I will hopefully have some more to update after that appointment. In the mean time, thank you again for all of your prayers. Please keep them coming! Please continue to pray for our friends Sean and Kallie. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason May 25th, 2007 Hello Family & Friends! Mason's week has gone well. He has been "on call" everyday for clinic based on what his labs have shown. His labs have been looking better, we are still battling low potassium and phos levels though. You would think coming from Idaho and being the "spud boy" he is that the potassium would not be an issue. So it's good that he LOVES potatoes because we have been stuffing him full of mashed potatoes and french fries! He is still coughing a little bit so he is still getting his oral antibiotic since we had to switch him from the IV antibiotic because of a reaction he was having with it. His hemoglobin, platelets and white blood have all been stable this week. The great news is his LDH level has come down this week to 1700 - thank you Lord! Overall, Mason is acting like he feels better. We are thrilled about his happy demeanor and his willingness to play more and interact with us more. I think it has helped him greatly that his diapers have calmed down some too. He even sat on his little rocket and pushed himself forward a couple of times - this is the most he has done in over two months! His liver functions have been elevated still so we trended them out and it appears the IV calcium and vitamin D booster may be the culprit - so we have stopped that for now. His calcium levels have looked good (above his target of 8.5) so we are hoping we can avoid giving him more boosters. Mason had to go see the dentist on Wednesday because he chipped his front left tooth. The enamel on the two front teeth has not developed on the entire tooth so I think it was just really weak and broke off while eating, plus having a calcium deficiency probably didn't help much. He was such a big boy at the dentist and protested only a little bit, but he got over it really fast. The dentist wants to cap his front tooth with a false looking tooth that is white on the front and stainless still on the back, but we discussed it with Dr. Prasad and he is going to help us make the decision for Mason. It is difficult to want to put Mason under sedation to have this work done on his tooth if it is not necessary, but we also have to be careful that this chipped front tooth doesn't open him up for an infection in his mouth. So Dr. Prasad is talking with Dr. Neals (the dentist) and will be asking some questions so we can all decide on what is best for Mason. Please be praying for wisdom for us and for protection from infection for Mason. It was like having deja vu at the dentist, because two years ago almost exactly I had to go into the dentist with Jazzy for her chipped front tooth. It was right before we came out to Durham, she was eating cereal at the breakfast bar and was watching TV. She went to get down and completely missed the stool and fell off and chipped her tooth. So both Jazzy & Mason have experienced breaking their front teeth in half - but of course with Mason it isn't as easy of a fix as it was with Jazzy. There Mason goes again, wanting to be just like big Sissy! So we are just pluggin along. Mimi is still here and we have enjoyed some time out together while she stays and plays with Mason. It has been really nice being able to go and visit some friends and go swimming at the pool with Jazzy - ya know those normal things we all take for granted. I am so thankful God has given us a new view on what truly are "blessings" from Him so we can truly be "thankful in all things". Thank you all for your continued prayers and support. Please continue to pray for our little buddy Sean, pray for God to halt the infection in his body and for strength and encouragement for his Mommy & Daddy. Please pray for Kallie as she is headed back home to be with her family. We love you all and miss you! In His Love & Care Eddie, Becky, Jazzy & Mason May 18th, 2007 Hello Family & Friends! Today we loaded Mason up to head up to clinic early since his hemoglobin level yesterday indicated he would need blood today. It was a blessing to have to come early today because we ran into so many of our friends. It was really nice being able to actually talk with everyone and catch up on how our lil friends are doing instead of reading about it via email or the caringbridge sites or while passing with an inpatient Mason clinic. Eddie was able to come along to clinic which is a huge blessing to Mason and I. Jazzy of course was lovin it too since Mimi arrived in town and was hangin with her all day. Mason did really well for the 5 hours we were at clinic, he was even up to some of his old hammin it up tricks. We started Mason on an IV antibiotic to help cover him just in case since his cough has returned and we want to cover his lungs. Dr. Prasad feels it is his sinusitis draining on him that is causing the coughing as his lungs sound clear. So we will be giving him an IV dose of Ceftrioxone at home once a day over a few days to see if this can really kick it out. The ultrasound that was done did show his liver was slightly larger in size and fatty in texture, unfortunately Dr. Prasad said this is really common with the post-transplant kids. So many of the meds he is on causes liver toxicity and since he cannot eat fresh, healthy foods yet he is consuming fatty foods which contributes to the fatty texture. All of the blood work they ran for viruses of the liver have come back negative - thank you Lord! So for now, we are still closely watching his elevated liver functions and trying to see if it is medicine related to try and switch his meds if needed. We will know in a couple of days since we restarted one of his meds that we had stopped a couple of days ago. His chemistries are looking better, he received another dose of IV Calcium to help give him a boost since his Calcium dropped below 9.0 - his phos level responded well today so we are praying that Mason will be able to get off of the sodium-phos and the calcium real soon. Mason's LDH levels (shows the break down of red blood and his hemolytic anemia) was down slightly today so that was a great praise too. We are still praying that God will halt those antibodies that are breaking down his red blood and platelets so we do not have to go on another immune suppressant drug like Imuran again. Overall, we are enjoying seeing our lil Mason's personality returning. I think dispite what's going on, he is feeling better, better than he has in 3 months since catching the Norovirus. We love seeing him giggling and trying to get our attention with his little tricks. He is even allowing Sissy to play with him occasionally... it's a start! We miss seeing the two of them playing together, the last several months Jazzy and everyone around Mason has had to put up with Mason responding "No" as he covers his face with his hand. The "no" response is dwindling a little bit - another huge blessing from God! We will continue to drop labs over the weekend to watch his levels and be on call to go into clinic if he needs anything. We will keep you posted as we keep on keepin on. Please continue to pray for our friends Sean and Kallie. Sean is still fighting a severe fungal infection and Kallie is still spilling protein in her urine. Thank you all for your prayers and for all the love and encouragement you give us. Keep the prayers coming and we will keep sending the hugs! We love you and miss you! In His Love & Care Eddie, Becky, Jazzy & Mason May 15th, 2007 Hello Family & Friends! I will try and keep this update short since I wrote such a novel on the last one - notice I did say "try" hee, hee! Mason has continue to keep us busy with daily lab drops and clinic visits. Today his levels were good so we got the day off - Thank you Lord! It was a blessing because Eddie was able to go with Jazzy on her school field trip to the Strawberry Farm - yummy! Mason got to stay home like usual and today was speech day so he wasn't totally stuck with Mommy all morning. Mason is beginning to show signs of a healthy white blood count - it was 11 today. Yes 11 - we were doing back flips - God is so good! His chemistries are looking better, he is still low on his Phos so we will continue our IV dosage at home. His hemoglobin is still trending down slightly, but hopefully it will be a few days before we need to go in for a transfusion. The main thing that has us concerned right now his is increasingly elevated liver enzymes. They are quite elevated so we have cut back on a couple of meds that contribute to liver toxicity - unfortunately these meds we are cutting back on he also needs them to help protect him against other things. We have an ultrasound scheduled for tomorrow at 1pm and some additional blood draws to check for viruses in his liver. So please be in prayer with us that Mason's liver is normal and the blood work come back negative for any viruses. The other issue right now is his infection in his lungs does not seem to be going away. His cough is actually back tonight so we will be discussing that with them tomorrow when we go in. On top of that, Mason somehow has chipped his front tooth. It is literally chipped in half and very jagged so Debbie is scheduling a visit with the dentist. As you can imagine by now - taking Mason anywhere other than clinic is always stressful. Please pray with us that the dentist will be able to get a good look at his tooth and that Mason will be protected from any infections. As you can see, Mason is still keeping it interesting, but the great news is that his COOMBS test showed negative. This is the test they perform to see if he is still in the hemolytic anemia state. So we are praising God for this, we are still praying for his hemoglobin though because his LDH levels (showing red blood break down) is still really elevated. Again, lots of prayers for wisdom and guidance with Mason's treatments and for strength and healing. Please continue to pray for our friends Sean and Kallie as they are still having their issues. Thank you all for the sweet Mother's Day wishes, I very much enjoyed "just chillin" with my babies and hubby on my special day. I still am in awe most days at the abundant blessings God has given me and the privilege He has given me in being Jazzy & Mason's Mommy. "For of Him and through Him and to Him and are all things. To God be the glory forever Amen!" Romans 11:36 Thank you for checking in on Mason, we will keep you posted on how the ultrasound goes tomorrow and the blood work. Thank you for your prayers. We love you and miss you! In His Love & Care Eddie, Becky, Jazzy & Mason May 11, 2007 Hello Family & Friends! Today was Mason's weekly clinic appt with Dr. Prasad and overall it went well. Some of Mason's levels have improved from last week. The biggest being his white blood count is up to 7 - thank you Lord! His WBC has not been this high since I think last year before he started his hemolytic anemia the first time. His LDH levels is still really elevated showing he is still breaking down red blood and he just got platelets today so he is still loosing those as well. We are trying to be patient and give the Ritixumab a chance to work and before considering putting him on another immune suppressant drug. We want to avoid Imuran as much as possible since we are still trying to recover from suppressing Mason's immune system from a year ago. Dr. Prasad feels we should not start the immune suppressant drug right now because Mason's liver functions are slightly elevated and we also want to give his White Blood a chance to develop. He is still getting IV phos at home twice a day, daily GCSF to boost his white blood and we are going into clinic daily to give him IV Vitamin D. We are also supplementing him orally with Calcium and Vitamin to D to help boost his electrolytes and chemistries. Mason has had a tough couple of months from trying to get over the Norovirus and dealing with his three auto immune disorders, as well as dealing with his sinusitis and the viral infection in his lungs. He is still really weak, too weak to roll over by himself or stand, but we are starting to see his little personality emerge again so we feel he is starting to feel better. God is so good and gives us what we need and Mason needs each day to sustain us... not to mention giving us the love and support we need through each of you. Thank you for all of you and what you do for us each day to encourage us. Thank you Frank Wallace and Meridian Speedway for your willingness to help tell Mason's story on Saturday at the race and for raising funds for him. We are so grateful for each of you who helped in this event. Mason's Aunt Nini was there on behalf of Mason and said it was so great to see the community still caring for Mason and thinking of us. We definitely miss Idaho and our wonderful community that has been so generous and supportive, we are sending hugs to all! I am planning a trip home (Lord willing, and Mason willing) the end of June to put on a yard sale for a fund raising event for Mason. This will be my first trip home since arriving here two years ago - May 14th, 2005. I am looking forward to it, but of course nervous about leaving Mason. I know Daddy will take great care of him while I am gone, but you know mothers - we like to worry! I am looking forward to seeing my family that I have not seen in two years, my sister, my grandparents, my nephews... well the list goes on and on for all the people I miss. I have heard from everyone all the changes that have taken place while we have been gone, so I know it will be bittersweet to visit. Bittersweet because when we left two years ago, the plan was to be back in about 8 months, it will be bittersweet because I will be returning without Mason and without the four of us together as I would like, it will be bittersweet because every store, every corner has a memory of our family life in Idaho and so much has changed in two years. Our town is different, our lives are different and we are different. We are different because of how God has grown us in our journey with Mason and how our priorities have changed - I am so grateful for it all, but being home will remind me of how our life use to be and I think it is going to be emotional. Well, enough about all of that - I could write a book - I think I just did with this update - Sorry! Thank you all for your continued love and support. Please continue to pray for Mason's strength, for God to halt his auto immune disorders and for strength for each of us for each day with running meds and clinic and such. Please keep Sean, Kallie and Alexia in your prayers as they too need strength and healing. We love you and miss you all and are sending Happy Mother's Day wishes to all of you Mommies out there and especially to my Mom Judy and Eddie's Mom Donna - without you both we would not be who we are today. Your selfless acts of love and the sacrifices you have made to be here to help us and encourage us these past two years have been instrumental in getting through each day. We love you and thank God each day for you both! HAPPY MOTHER'S DAY! In His Love & Care Eddie, Becky, Jazzy & Mason May 7th, 2007 Hello Family & Friends! We had such a great time at the Rainbow Walk seeing all of our friends. Our friend Kian was in town for his19 month follow up and it was so great seeing him cruising around and talking up a storm (don't check out the new pics of him and our other buddies from the walk) It was so amazing to be able to see all of our buddies, I wish we had more time with them. The rain came so we wrapped up early, Mason was ready to go too. We got home and clinic called with Mason's lab results. He was needing platelets again which surprised me since we just got them on Wednesday. So we again headed up to clinic to spend the afternoon with our girlfriends. Daddy came along again so I was able to visit with a few of our friends who were there as well. Mason's labs looked good on Sunday so we actually got a day off from clinic which was nice. Today Mason needed blood again so we loaded up and headed to clinic for our infusion. Daddy came along again so Jazzy and JuJu could go shopping again - that's my lil shop til you drop girl! Mason really blessed me today with his demeanor. He was such a sweetheart at clinic, he actually allowed Debbie to listen to him instead of his usual protesting. He even gave Miss Julie and Miss Karen his arm for blood pressures each time they came in to take them. He was hamming it up for us imitating whatever his movies were saying. It really touched my heart today to finally see a glimpse of my lil Mason back! God is so good - He gave us so many wonderful moments with Mason today. Today Mason's calcium levels looked good - above 9 and his phos is trending up a little. His white blood was even up above 3 today - thank you Lord! His oxygen SATs were at 94% so they are doing better than they were last week. We are continuing with the antibiotic and breathing treatments to help clear up his lungs. Please continue to pray with us that God will protect his lungs and give him strength - or as Jazzy prays "please take his poop and ani-by-botic away" Please continue to pray for our friend Sean, for God to stop the infection in his body. Please continue to pray for Kallie and her kidney issues. We were reminded on Saturday while walking with so many of our friends how blessed we are to be here and the privilege it is to be continuing this journey with Mason. God is so good, He has continued to strengthen Mason and our family each day and I hope that each one of you know how much God has used you to be apart of that strengthening and encouragement that gets us through each day. We love you and send hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason May 4th, 2007 Hello Family & Friends! Mason again has kept us busy visiting all of his girlfriends up at clinic this week. We have gone into clinic everyday to get his IV push of his Vit D and calcium to try and get his levels up. We had also needed blood on Tuesday and platelets on Wednesday. As of today's visits, Mason's levels were improving. His phos is up to 2.3 which is much better than his 1.3. His calcium is finally at his goal level of 9.1 - thank you Lord! His white blood is still bouncing all over the place and is sitting below 3 - but the great news is his LDH level was 1600 today - THANK YOU LORD! This level as many of you know is what tracks if he is still in the hemolytic anemia state - our goal is to have it at 1000 or less and it has not been below 2500 for several weeks now. So thank you for your prayers on this one... keep them coming. Mason's oxygen sats have been low this week. He has been sitting at 90 to 92, which he should be at least 97%. So Mason had a chest x-ray done on Wednesday that showed in his left lung he has some air sacks that show they have collapsed. This was explained to us that Mason is not taking deep enough breaths to open them so they are closed and probably contributing to his low SAT levels. Well, his numbers have not improved all week, including today so we went in to have an echo done of his heart and to have a CT scan of his chest and sinuses to see it there is anything else going on. Well, the echo was good, no change from the one done back in October, however the CT scan today showed that Mason has some infection in his lungs. Right now they are unable to determine what...but they think it is A typical and not bacterial. Since we think it is viral he is on oral antibiotics to cover it. We will have another x-ray early next week to see if the four times a day breathing treatments and antibiotic help it to clear. Please pray that Mason will be protected from increased infection and that God will clear his lungs and strengthen him. Aside from all that Mason went through today and despite the really long day at clinic, he was such a trooper. I know it helped tremendously to have Daddy with us, he always acts like such a big boy for Daddy. Thank you JuJu for coming and seeing us and taking Jazzy girl shopping so Daddy and I could spend the day together at clinic. It was nice to see some of our friends at clinic today and actually be able to talk to them a little bit. Please continue to pray for our friend Sean, without going into too much detail... his little body needs a miracle and we know God has the power to perform them! We were okay'd to walk with our friends tomorrow at the Rainbow of Heroes Walk ( www.rainbowofheroeswalk.org) so we will be sportin Mason in our Hurler's Heroes shirt (thank you Maria!) and his oh so fashionable green mask. It may be a short appearance but we wouldn't miss it for the world.It is so hard to be there knowing some of our friends are too sick to attend or are in Heaven watching over us - we will miss them greatly and will be thinking of them all as we make our 5200 yards around the track. We will be walking not only for our Hurler's Heroes - but for all of our brave little friends who have fight so hard and continue to fight each day. Thank you all for your faithful prayers, love and support. We are so thankful to be so loved. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason April 29th, 2007 Hello Family & Friends! **Please pray for our friend Sean who is back in the hospital getting his infection "vacuumed" out of his chest. Please continue to pray for Kallie as she is still having kidney issues.** Our rainbow walk of heroes is this weekend. If you have a chance please consider donating for the money goes directly to helping all of the families up on the unit. Mason is walking (or strolling in his stroller) with his Hurler Heroes Team to help raise money. Instructions on how to donate is on the top of Mason's home page. We are so excited to be able to participate in this great event, we hope you will consider helping too! Friday was our clinic appointment with Dr. Prasad. Mason has had everyone concerned about his decreased phos and calcium levels. After speaking with Dr. Prasad and the kidney specialist they feel that Mason has a Vitamin D deficiency which has caused a trickling affect with all of his chemistry levels. This is a relatively simple fix, we just need to give him more Vitamin D. So we gave him IV Vitamin D, Calcium and Potassium to try and get him back on track. We are continuing to give him his IV doses of phos twice a day at home in hopes to get his phos levels back up. We are praising the Lord today for it not being a serious kidney situation - God is so good! We have been running labs daily this weekend and going into clinic to get his IV dose of Vitamin D, calcium and phos and we have also begun supplementing him orally with calcium. We are hoping by Monday we can go to just giving him oral doses of Vitamin D once we see where his numbers are. He loves his girlfriends up at clinic so much that he wants to hang out with them everyday, all day - but Mommy and Daddy are hoping we can slow down a bit and just relax at home for a few days this week. Jazzy and I had a wonderful day together on Saturday. Daddy took Mason to clinic so Jazzy and I could have a girls day out. We went and picked strawberries at Mark Waller's Farm (thank you Mark and Pam for the yummy strawberries!) We brought them home and made some pies. We even got to plant some flowers outside and just hang out together doing our favorite things. Eddie and I were so blessed on Friday because we celebrated our 11th anniversary as husband and wife. God gave us such a blessing Friday morning, Jazzy was at school and Mason had laid back down for a quick snooze so we were able to have some coffee together and talk about all the blessings we have been given. As many of you know, those little "oasis" moments as Eddie called it, are few and far between! As many of our transplant friends know, having a "quiet" morning to spend time with one another was truly a gift from God that we treasured greatly. So we are off to clinic again today, but his numbers looked like they were improving from this morning's labs so we are trusting God is moving Mason forward. Thank you to each of you who continue to pray for Mason and our family which brings us much encouragement. Thank you for your emails, letters and phone calls to let us know you care. Feel free to send us messages to Mason's guestbook at www.caringbridge.com/visit/masonjenkins or send us an email to meetmason@gmail.com. We love hearing from you all and look forward to the day when Mason can give you a REAL hug! In the mean time, we are sending hugs to you all. In His Love & Care Eddie, Becky, Jazzy & Mason April 25th, 2007 Hello Family & Friends! This week has been a busy week. Aunt Nini left bright and early Tuesday morning to head back to Idaho, we'll miss you Aunt Nini! Mason had to go into clinic on Tuesday because ALL of his chemistries were off. His magneisum was low (a scary .8), his calcium was "scary" low as our NP Sue put it. She asked us if he was screaming in pain when we touched him because his level indicated he should be in pain. Of course, this is Mason we are talking about. He showed no signs of pain. In fact Monday was his best day in weeks maybe even months. He actually participated in Physical Therapy and Tuesday he participated for his Speech therapy and was even giggling and playing with us through out the day. So needless to say, we were a little shocked that all of his levels were off. His phos was still really low, despite the twice a day, four hour infusions we are giving at home. We loaded up on Phos and Calcium on Tuesday and closed out the party at the clinic at around 8:30pm. We then dropped more labs today and they too came back incredibly low too. His phos had not changed from yesterday's level despite getting three doses of four hour infusions. His calcium was "scary" low again. So we headed up and got phos and calcium again and closed the clinic down again. I'm tellin ya, Mason has decided he is a little party animal and wants to party all day and night with his girlfriends at the clinic! At this point we have everyone concerned about his chemistry levels and why they continue to drop, but no one has answers for us. We took some urine yesterday for the Kidney Specialist to look at to see if there is something going on with Mason's kidneys. Please be in prayer with us that God will give the doctors wisdom in addressing Mason's issues. At this point we are scheduled to drop labs again tomorrow to check his chemistry levels again and we will meet with Dr. Prasad on Friday to discuss what the urine collection shows. Please pray for Mason's kidneys that they will function as they need to and that God will give us wisdom on how to treat his low phos and calcium levels. Please also pray for our friends Sean and Kallie as they are enduring some serious post-transplant issues. Thank you all for taking the time to check in on Mason. Despite his levels, Mason's has been showing us a little more of his old self again. He has been trying to ham it up for us and performing with his Wiggles videos. As always we are thinking of you all and missing you and we send our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason April 20th, 2007 Hello Family & Friends I apologize for the lack of updates... it has been pretty busy around here. Eddie and Jazzy arrived back in Durham on Tuesday evening... needless to say Mason and Mommy were happy to see them return! Mason had asked several times for "Da-Da" and made me look in every room of the house to make sure he really wasn't home. He squealed with delight when we picked them up at the airport. We have been also blessed with Aunt Nini visiting us this week. Jazzy and Mason have enjoyed having her to play with and Eddie and I have been blessed to spend some time together at clinic while she stays with Jazzy. Thank you Aunt Nini! We were at clinic on Wednesday to get some fluids - sodium/phosphorus, since he can't seem to hold onto it. We got set up at home to administer it through his pumps... but even with that he then had to get some again on Thursday plus some calcium. We are kinda getting use to the four hour infusions. Today was our clinic day with Dr. Prasad and let me start with the GREAT news. Mason's white blood cell count was 6.3! Thank you Lord!! This is the highest it has been in months, since getting off of the Imuran. Mason has been sitting at around 2.0 so needless to say we really like this number. He had to get blood yesterday so his hemoglobin looked good. We took a little longer trending down this time so we will see where it goes from here. What we are praying for now is that Mason's LDH levels will go DOWN. His LDH levels reflects the amount of new red blood he is creating because of the antibodies that are breaking down his red blood. Dr. Prasad has set his range at around 1000... lately Mason has been at 2500 so this is not good. It still shows that he is in the stage of hemolytic anemia. Please be in prayer with us that this level will go down. Pray the steroids will help combat these antibodies so they stop breaking down his red blood. The next step in trying to halt this process would be another immune suppressant drug, like Imuran. We are finally seeing his WBC increase after 6 months or more of no WBC so we DO NOT want to suppress it! Dr. Prasad wants to give the Ritixumab a few more weeks to do it's job, but today was his last dose so we are done with that treatment. Mason continues to be incredibly weak, but Dr. Prasad thinks it is more related to his low phos level than the steroids. We did get to reduce the steroids today despite his elevated LDH levels - Thank you Lord! We have seen good progress in Mason the last couple of days... he is being more of himself. The diapers had subsided a little bit, until today. Today the diapers were back to about 10 or so. Please continue to pray that his body will be able to fight off the last of his Norovirus bug and that his body will stop the auto immune disorders. Thank you all for taking the time to check on him and for praying for him. The prayers were heard and they continue to strengthen us and encourage us. We love you and miss you all! In His Love & Care Eddie, Becky, Jazzy & Mason April 13th, 2007 Hello Y'all! Today was Mason's clinic day with Dr. Prasad. We arrived bright an early before 9 am so we could get started on Mason's third dose of Ritixumab. After seeing Mason's labs, Dr. Prasad decided not to change Mason's steroid dose like we were hoping to do. Mason's hemoglobin had dropped to 8.3, platelets were 33 and white blood cells (WBC) was 2.0 and his LDH level was elevated to over 1500. Because all of these numbers are still showing significant signs of the antibodies that are breaking down his red blood, platelets and white blood, we are to continue on the dose of 7mls of Solumedral (Mason's steroid) twice a day. This has made him incredibly weak, plus his diapers continue to be frequent so he is still weakened by the virus he has been fighting off as well. We went ahead and took another stool sample today to test it to see if it shows us anything new since he has been "dealing" with this "bug" for over 6 weeks now. We will probably hear back on that by Monday. The good news is that Mason's viral battery (nasal swab) that we did on Friday came back negative so he is not fighting RSV or anything serious. His cough has gotten better, but is still there occasionally. The problem with getting the Ritixumab is it targets his B-cells and makes him more prone to getting viral infections which he can not fight off. Please continue to pray with us for protection for Mason and for strength. After seeing Dr. Prasad we were also given some IV fluids with magnesium and phosphorus since Mason keeps loosing those, another result of the frequent diapers. I think we finally left clinic around 7pm today. Like Monday, we arrived home after 7pm just in time to get him hooked up to his evening meds so needless to say, we were wiped out. Although it was a long day, it turned out to be a blessing because we got to see several of our little buddies while hanging out so long at clinic. Please continue to pray for Kallie as she arrived to Duke this morning to help get some answers to her fluid issues. Please continue to pray for Sean as they seek wisdom and guidance for his serious fungal infection. We also saw Christine, Annabelle's Grandmother. They are here from Boise for a few weeks to try and get Annabelle well. Please pray for these families as they endure their own post-transplant issues and living each day with the emotional stress of it all. I just "so happen" to read some chapters in Peter today and I was reminded in 1 Peter 5:7 "Cast all your anxiety on Him because He cares for you." and 1 Peter 5:10 "And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong firm and steadfast. To Him be the power for ever and ever. Amen" Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason April 6th, 2007 Hello Family & Friends! Today Mason went to clinic for his second dose of Ritixumab. We arrived before 9 because we knew we had a really long day. Mason was such a trooper through getting his blood pressure and vitals taken every 30 minutes during the four hour infusion. He then had to receive his monthly dose of Pentamadine and IVIG which also requires vitals to be taken so needless to say he was really tired of getting his blood pressure taken. We finally left the clinic at 7pm and boy was Mason sure happy to be leaving! He truly is a trooper though - he was the first one to check in and the last one to leave so he literally closed the joint down! Dr. Prasad is still inpatient so we met with Dr. Parik so we did not change anything with Mason's steroids or meds. The only concerns we had wanted to discuss is the continued runny stools and Mason's new developing cough. We are going to continue the oral IVIG to cover him still with the Norovirus since we think that is still the culprit with the runny diapers. We did a viral battery (nasal swab) to make sure he is not getting a cold bug and started him on an antibiotic to cover his lungs to be safe. With a white blood count of .9 (yes, less than 1) you can never be too safe. His labs looked really good, other than the low WBC. His hemoglobin was sitting at 10 so it has slowly been decreasing, but not in large numbers like before. Mason has been doing really well with stopping the cyclosporine - thank you Lord! Thank you all for your prayers that God will use this to get Mason off the cyclosporine and continue to protect him against Graft vs. Host. We will continue to drop labs this week and be "on call" to take him to clinic if needed. We are scheduled to get his third dose of Ritixumab on Friday. He is still incredibly weak from the steroids and fighting off this Norovirus bug so he is still needing your prayers for strength. Thank you again for all of you who have mailed us Easter packages this week, for the emails, letters and phone calls. We have felt so loved and encouraged by all of you this week. Please continue to pray for our friends Sean, Kallie and Alexia and Bryce as they have had a big week this last week and have more to come. We love you and pray that your Easter will be filled with His love and blessings. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason April 1st, 2007 Hello Family & Friends! Mason's clinic visit on Friday was a long one. We arrived before nine to check in and drop off labs and to get hooked up to his new med Ritiximab. We finally ended up leaving clinic and arriving home around 5pm. Mason was such a little trooper though. The medicine had to be set up where it would run for four hours and it had to be programmed for a new rate every 30 minutes or so. It totally broke my heart because each time the medicine beeped to let us know that program was done and it was time to move to the next program, Mason would get all excited and say "go, go?" "Daddy, Sissy?" Usually when the medicine pump beeps telling us it is done I tell him "let's go and see Daddy and Sissy" and he gets all excited. He had two really long days in a row, Thursday because he got blood and Friday because of his new med, so he was ready to get out of there. Friday Dr. Prasad decided to stop Mason's cyclosporine cold turkey, yep that's right I said cold turkey. For those of us transplant families we are doing a double take because that doesn't usually happen with cyclosporine. This is the med that helps Mason combat the Graft vs. Host disease. Dr. Kurtzberg recommended to Dr. Prasad that Mason should be taken off of it as he has been on it a really long time and a high dose that she thought it was contributing to his hemolytic anemia. So we are have been off of cyclosporine since Friday night and Eddie and I have been like hawks watching Mason's skin for any indicators for a GVH rash. Plus we are watching his stools for any signs of GVH of the gut. Please be in prayer with us that God is protecting Mason from the GVH and that this is His way of getting Mason off of cyclosporine and healing him of the auto immune disorders. We also have set up that Mason will get the Ritiximab for the next four weeks on our clinic day on Fridays in hopes to target the antibodies that are attacking his red blood, platelets and white blood. We were told that it takes a couple of doses before we will see his levels improve so we are hoping to start seeing progress after next week's dose. Mason has been feeling a little bit better, but he is still having alot of runny diapers and is incredibly weak. He is barely able to walk with assistance. He is dragging his feet across the floor as we help him walk and he is getting weaker. I know it is from the lack of exercising because the steroids have been increased and making him weak, as well as he hasn't felt well enough to exercise. So we have been getting him up and moving as much as we can, but more times than not, his little legs just give out. Please continue to pray with us for Mason's strength and healing as he has a long way to go. Thank you to each of you who have been praying for him and our family, we have been strengthened and encouraged by your prayers, emails and letters. Please continue to pray for our friends Sean and Kallie as they are battling serious post-transplant issues. Please pray for Alexia as she begins her total body irradiation and chemo this week to get her ready for her second transplant. We are so grateful for each of you, and thank God each day for you all and for His grace and His strength that has been carrying us. We love you and send hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 28th, 2007 Hello Family & Friends! Today marks the two year anniversary of that awful day we received our diagnosis from Mason's pediatrician that he had a incurable genetic disorder called Hurler Syndrome. With all the dates to remember, this is the one I will never forget because it has forever changed our lives. I remember it like it was yesterday. Easter had come on March 27th in 2005 and we had celebrated a wonderful Easter Sunday with our family. Although it was a wonderful weekend filled with an Easter egg hunt in our backyard and lots of good food as usual, I was nervous because of our pending appointment with Mason's pediatrician the next morning. Monday the 28th was our appointment to meet with Mason's pediatrician Dr. Kim to discuss some lab work we had done to get to the bottom of all of his breathing issues and such. I was nervous because she had never called us both into a meeting before, but I kept chalking my nervousness up to my undying pessimism. So upon arriving to our meeting, Eddie & I were immediately concerned when we could see Dr. Kim's hands shaking and having difficulty with her words. Time felt like it stood still while she explained our son had a life threatening genetic disorder. I can still remember my thoughts racing and trying to fight back the tears that were overwhelming me as soon as I heard her state the only treatment option would be a transplant. The weeks to come after receiving the news were most difficult we had ever faced. The uncertainty of our son's future, the endless questions regarding what was best for him and the overwhelming emotions of it all consumed us each day. During that time God's grace carried us each and everyday. We would be asked daily, "how are you able to get out of bed each day and face this not knowing what is going to happen to Mason" and our response was always, "Only by God's grace and His strength". Well, it is two years later and the weeks are still filled with uncertainty for Mason's future, endless questions on the treatment options we are taking for him and the overwhelming emotions we deal with each day, and we are still asked the same question. Our response is still the same "Only by God's grace and in His strength are we able to face each day". We don't know what the future holds for Mason, but we know the ONE who holds the future and our trust is in Him and He is faithful to never leave us. It is only by clinging to Him that we draw strength and encouragement to face such uncertainty each day. Today Mason's labs show he will be getting blood tomorrow so it will be a long visit for him since we are also scheduled to get an ultrasound done on his abdomen. The x-ray came back showing "unchanged" so we now want a clearer picture of what is going on in his abdomen. He is still having stomach cramping and some diarrhea, but he it is not as frequent as before. Debbie confirmed that Dr. Prasad wants to start the four week treatment with the Ritiximab starting Friday. It is a long infusion so our next four Friday visits will be quite long for Mason. Please be praying for his continue strength and healing as he continues to weaken from the steroids and not feeling well enough to develop his strength back. Please pray for his patience and our own as we endure longer and more frequent clinic visits. We are so thankful for each of you and the prayers you lift up for Mason. Your thoughtfulness and faithfulness to our family has meant so much to us. Today I realized that we have been enduring this new life with Mason for two years, but you all have been too. We are not alone and we thank you for staying the course with us. Sending our love and hugs to you all! We love you! Please pray for our friend Sean and his Mommy & Daddy as well as Kallie and all of our other transplant friends! In His Love & Care Eddie, Becky, Jazzy & Mason March 23rd, 2007 Hello Family & Friends! Thank you all for your continued prayers and words of encouragement to us - we love you all! I am going to try not to bore you with all the medical details from our visit today with Dr. Prasad, but to make a long story short, Mason is back to where he was 18 months ago when we were discharged from the unit. Mason has been feeling much better from his Norovirus bug, he has not recovered entirely from it, but he is feeling better. Today Dr. Prasad broke down everything that Mason is doing and what is concerning him and how we are going to treat it. First Mason's little sinus infection and Norovirus encounter has re-triggered his hemolytic anemia (breaking down red blood) so that explains why he has been declining with his hemoglobin and needing blood lately. He is also forming antibodies against his neutrophils in his white blood which we found out about a couple of weeks ago called autoimmune neutropenia. Today we learned he is also destroying his platelets which is called autoimmune thrombocytopenia. Whew! alot of stuff for one little guy I know. What this means is that Mason is going to be on steroids for awhile to help combat these antibodies that are breaking down everything. We had gone back on steroids three weeks ago when we learned of his autoimmune neutropenia and had decreased his steroids the past two weeks to help him recover from the Norovirus, but we will have to increase them again as soon as he recovers. We are also looking at giving him a dose next Friday of Ritiximab, which is a med that will help target the B-cells and antibodies. This is a pretty big drug and Mason is not strong enough right now to get it because of still recovering from the Norovirus, so we hope he will be ready for it next week. We also took another x-ray today of Mason's abdomen because it is quite large. We are trying to find if he is having a fluid issue or if there is something else we need to be watching for... we will hopefully know more about the x-ray tomorrow. For now, Mason is acting more comfortable - thank you Lord! He is so weak from the steroids so he just lays around and his belly is too large to sit up for more than a few minutes. It's been difficult seeing him go backwards in his mobility after he has worked so hard to gain it. Today's news from Dr. Prasad was not a total surprise to Eddie and I because we have seen Mason slowly going backwards this past month, it was just difficult to hear that he has developed his autoimmune hemolytic anemia again as well as the thrombocytopenia. Despite the news today we will continue to put our trust in the faithfulness God has shown us time and time again. With every set back we have endured with Mason, there has always been a blessing and a greater knowledge of God's grace and mercy on the other side. Again I am reminded of our verse "Though you slay me, yet I will trust you". Please continue to pray for Mason's healing and strength and for our patience as we have such a long road of recovery ahead. We are so grateful that Mason's conditions are treatable, we know in the transplant world there could always be "worse" circumstances and conditions that we could be facing. Please continue to pray for our friends who all have their own battles post-transplant as well. Thinking of you all and sending our love and hugs to you! In His Love & Care Eddie, Becky, Jazzy & Mason March 19th, 2007 Hello Family & Friends! Well, Mason has proven again this week that he is wanting to visit his girlfriends daily at the day hospital. We went in Saturday to get his four hour blood infusion since he dropped to 7.4 with his hemoglobin. Sunday we went in because his Magnesium dropped and Monday we went in because his potassium was low and his electrolytes were all really wacky. So he got 4 hours of fluids as well as some lasix to help drop his potassium which is too high. We will be going in today because his platelets have dropped to 14 - yikes! His parameters are if he goes under 20 he gets platelets. We will also see what we need to do because his potassium is really high again, 5.2 (should be about 3 and above 6 can cause cardiac arrhythmia?) So we will head up to clinic again today - I really love all of our nurses, but I am not digging having to hang out with them so much lately. I'm sure they are getting sick of us too, especially now that Mason just screams "No!" at everyone who enters or even tries to talk to him. It is starting to get nice out again this week and it would be nice if we could get outside a little bit to help our sanity! I know Mason is definitely ready for a change of scenery. Mason is acting like he is not as uncomfortable as he was a couple of days ago, so that is a HUGE blessing. His diapers are still pretty frequent, but they are trying to firm up a bit. I am hoping his oral IVIG has helped him fight off this infection. Thank you for your continued prayers - I know God has heard them because yesterday Mason was the most comfortable he has been in 2 weeks - thank you Lord! So we are thankful for each of you and your faithfulness to praying for comfort and healing for Mason, God is good and has heard our requests! Mason has also started to look like he is developing a GVH rash on his skin. Right now the redness is coming and going (flushing) and his skin is a little dry, so we have started him back on his creams. Please pray with us that the rash will subside and not develop into anything that we need to increase his steroids for. We hope to update you after meeting with Dr. Prasad - we are going to try and see him today even though it is not our typical clinic day. Please keep our friend Sean in your prayers as he too has decided to visit all of the sweet ladies at the clinic daily this past week and this week. We are praying God will provide wisdom to the doctors for his treatment and that his current treatment will work quickly so he can be back on the road to recovery with flying colors! We are praising God for our friend Alexia's remission status and will continue to pray for strength and healing for her as she prepares for her second transplant. As it is said in Psalm 34:8 Oh, taste and see that the Lord is good, blessed is the man who trusts in Him! We will continue to trust in Him and to see His light in all circumstances. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 16th, 2007 Hello Family & Friends! Today was Mason's scheduled clinic visit with Dr. Prasad. Mason's labs looked good today - thank you Lord! so we did not need to get anything at the Day Hospital. Mason has been able to hold onto his platelets that he received last Saturday and he has held onto the Magnesium and Potassium he received at clinic on Wednesday. His hemoglobin has been steadily declining, today he was at 8.1 so we may need to get blood this weekend at the Day Hospital. Thank you for your prayers regarding his low white blood count, God has heard your prayers and Mason's white blood has been slowly increasing. He is on daily GCSF at home which is a cell booster so hopefully we can begin to get weaned off of this so he can produce the WBC on his own. Today while visiting with Dr. Prasad he confirmed that Mason is still fighting the Norovirus bug, his poor tummy is really bloated and just gurgling and cramping. He still is having frequent diapers, but they are not as runny as they were so that is a blessing. All of his levels go crazy when he has frequent diapers which then warrants more visits to the clinic for replishing. Poor guy still does not feel like himself, he is very whiny and cranky and just wants to have bottles and snuggle all day long. He did well for Speech and Physical therapy on Tuesday, he actually got up and walked around a little bit, but Thursday's visit was very unproductive. His physical therapist brought us a walker for him to use since he is so weak. It made me so sad seeing him have to push a "little old lady walker" around when just a couple of weeks ago he was cruising all over on his own. I know the steroids have a huge role in his weakness, but this Norovirus has really knocked him down too. Please continue to pray for our little guy to gain his strength back, for comfort as he has been very uncomfortable and for his white blood to continue to increase in production so he can start to fight off infection. It has been hard this past month to see him go backwards in his progress. Today we got switched back to IV cyclosporine, which makes him on 3 IV meds at home now and we were given a new oral med to help combat infection so we are now at 10 + oral meds. The new oral IVIG medicine is to be given 4 times a day, so needless to say his medicine regiment has kept us busy. We will continue to drop labs off daily and "be on call" for clinic if he needs anything. We also have to pick up his oral IVIG from the pharmacy daily as they can only make it daily for him. We hope to have our lil guy back on progressing forward real soon. We know God has been using each of you to encourage us with His love and comfort through your prayers, emails and letters and we are so grateful. Thank you Becks for your wonderful St. Patricks package, the kids loved it! Thank you Aunt Nini for the adorable signs for the kids' room. Please continue to pray for our friend Sean who is so much like Mason and "stumping" doctors with his post-transplant issues. Please also keep Alexia in your prayers as she fights to get into remission for her second transplant. I know all of our lil buddies appreciate your prayers as they all have their own battles with their post-transplant recovery. Thank you all for your love and support, thank you for your guestbook entries on Mason's caringbridge site ( www.caringbridge.com/visit/masonjenkins) and thank you most of all for thinking of us and praying for us. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 12th, 2007 Hello Family & Friends! Today marks T+507 (507 days post transplant) for Mason and I am so thankful for the great day God granted us today. It was a beautiful day outside today here in Durham, spring was definitely in the air and Mason got to enjoy some of it today! His labs looked good today so no clinic run - thank you Lord! Dr. Prasad even took us off the yucko Vanco! (vancomyacin IV antibiotic) Eddie had been wanting to start on a project outside so him and Jazzy spent pretty much the entire day working on it. It was so refreshing to see Jazzy playing outside and helping Daddy with his project. Mason had been a little cranky so I decided to load him up in the stroller and head outside with him. He very rarely gets to do this due to the sun causing GVH, him having to wear his green mask and not to mention his super low white blood count that cannot fight off infection. I took him out in the yard, under the shade trees and he got to stroll around in the backyard a bit - this is entirely new to him since before we were always concerned about other people's pets and lack of shady areas. I even took him on a walk which he really enjoyed. After about 30 minutes though I did bring him back inside because he starts getting really hot having to breathe through his mask. But it was so wonderful to be outside and enjoying the nice spring air. Eddie and I were talking about how we have not been out "working in the back yard" for over two years and it was such a blessing to enjoy that together today. God is so good! Mason will continue to "be on call" for clinic, we are dropping labs daily and depending on what his labs show, we may have to go in. Saturday we got potassium and magnesium and platelets so that covered us for today. His hemoglobin was dropping a bit so we are praying it will stay above 8 so we can maybe not visit the clinic again until Friday for our normal clinic day with Dr. Prasad. Mason is still having stools from the Norovirus, but it seems as if his stomach cramping has subsided a bit. He is feeling better and as soon as we can get off the steroids I know he will be back to his little self again. Thank you all for your prayers for him, please continue to pray for his white blood cells to increase in production and for protection against this Norovirus. We are so encouraged to see him feeling better and we are looking forward to being able to update you all with a great report soon. Thank you again for all of your prayers, please continue to pray for all of our little friends who are each enduring their own battles with post-transplant recovery. Sending hugs and our love to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 9th, 2007 Hello Family & Friends! Thank you all for your prayers and loving words for Mason and us this week. We went into clinic today and God so graciously gave us some answers with what is going on with Mason. His cultures came back positive for "a contaminate" in one of his lumens to his central lines - because they were not labeled correctly we are not sure which one it is yet, but did more cultures today to help narrow it down. So back on the vancomyacin IV antibiotic we go. Mason got his first 2 hour dose at clinic today. Mason's stool also came back from the lab as testing positive for Norovirus - a really common GI bug that has literally exploded in our community here in Durham. The really frustrating thing about Mason getting the Norovirus is he had to have picked it up at clinic because he literally goes no where - just to clinic and they have had so many reported cases we had to catch it from there. So this explains the out of control diarrhea. Mason already suppressed immune system has taken a pretty be hit with this virus so we will continue to monitor Mason and run labs daily to see if he needs to come in for any fluids. He is acting a little more comfortable, although he is still experiencing the diarrhea and cramping. Poor lil guy has gotten so weak from the steroids and now this bug, that we have to help he walk to the table to sit down for his meal times. Even sitting up in a chair for any longer than 10 minutes becomes uncomfortable for him. So needless to say, he has had a tough week. We are hoping this Norovirus bug will clear up quickly - Dr. Prasad seemed to think it would be by this time next week. We will then address the steroids next week after we get over this hurdle with the virus. In the meantime, we will keep you posted on how he does. We are praying he is back on the road to recovery and that God will continue to supply his little body with strength and healing. Thank you for checking in on him and for your prayers, they mean so much to us. For now we will just have to wait and see how his body fights off the virus, he is still pretty weak, but we are expecting him to be back to his little self in no time just as Mason always does. Please continue to pray for him and for our friends who are all enduring this battle with us. Sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 7th, 2007 Hello Family & Friends! Wow - what a week Mason has given us. Since my last update we have spent way too much time at the day hospital. Mason really needs your prayers as he is not feeling very good at all. Saturday we spent the morning at clinic getting his IV IVIG (immune booster) and got home after lunch which was nice so we could spend some last moments with Mimi before she headed back to Idaho. Mason was doing pretty well until Sunday afternoon. He started having very frequent runny stools which initially we thought were from the IV IVIG doses. Mason then had Eddie and I pretty concerned when he started acting like he was very uncomfortable and acting very irritable. Of course, this all came to a head at about 1am so we contemplated calling the BOP on the unit (the place you go after clinic hours) thinking maybe something was wrong. But we were finally able to calm him down and after taking numerous tempertures that were normal, Mason finally fell back to sleep and we did not have to visit the dreaded BOP room. We then headed up to clinic on Monday to receive some fluids and an IV antibiotic and didn't leave until after 7pm. He was still having really runny stools (about 10-12) and acting real lethargic today so we headed back up. Mason again visited there until 8pm (we closed the joint!) and we will return everyday this week until we see improvement. Mason had everyone concerned enough today that we were looking at maybe having to be admitted for observation. He was running a low grade fever (which he is on steroids which suppresses the fever so it could have been higher) and he was acting like he had chills and had vomited. All warranted a visit by Dr. Prasad whom we were very happy to see. For now we are thinking it is viral related, none of his cultures and stool samples have shown anything, but he definitely has some type of GI thing going on. We took an abdomen X-ray which showed he was "packed with poo and gas" as the nurse put it which is bringing him alot of discomfort. Mason is literally screaming and drawing his knees up when he has to go, it truly breaks our hearts to see him like this. For all of us who know Mason, he musters through pain like a champ so when he is uncomfortable, we know it must be substantial. For now we cannot give him anything for his discomfort other than Tylenol because it would only slow down the process of him relieving all of the bowl he still has in him. On top of all of that, he had to get blood today because it was low again. His white blood was also low, it was only 1.3, this is even after him getting his daily GCSF doses that we give him at home. His platelets are dropping and "clumping" so needless to say we are a little concerned about our lil guy. Please continue to pray with us that God will strengthen his little body and bring him comfort during all of this. Your prayers are so much appreciated and a great source of encouragement for us. "For our light afflicition, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal" 2 Corinthians 4:17-18 . Keeping our eyes on Jesus who is eternal and looking for Him to supply us with His strength and grace. Thank you for your prayers, your emails and letters and most of all for the your love - sending our love and hugs to you all! In His Love & Care Eddie, Becky, Jazzy & Mason March 2nd, 2007 Hello Family & Friends! Today Mason went in for his scheduled clinic day with Dr. Prasad, we decided to arrive bright and early so we could get back and take Jazzy to a movie today before Mimi headed home tomorrow. Well, in true Mason fashion, Mason decided he had his own plans for the day - plans to stay up at clinic ALL day long! We arrived at 9:00 and dropped of labs when we checked in. We were hoping we did not need to get anything today. Monday's labs had showed that his hemoglobin was down to 8.8, but he was at a good level and his cultures came back negative. He acted a little cranky last night so we thought maybe his blood was down a little bit or maybe his magnesium. We were not expecting the day we had. Mason's blood came back at a scary low level of 6.4 so we rechecked it to make sure it was accurate. On top of that his White Blood was down to 1 - yep a whopping 1 is pretty scary too. So we went to the day hospital to get IVIG (his immune booster) and they ordered blood. It wasn't until we talked with Dr. Prasad that we realized the severity of Mason's condition. Dr. Prasad informed us that Mason is forming antibodies that are attacking his neutrophils in his white blood, thus decreasing his white blood production. So instead of having his auto immune hemolytic anemia (breaking down red blood) Mason is now having auto immune neutropenia - breaking down white cells. Sigh! Since Mason's hemoglobin dropped so much since Monday, he is now having to go back on higher doses of steroids via his IV pumps again. We received a dose of 25 while getting his blood at clinic. And finally after 7 pm we were able to return home to begin his new meds regiment. He is on 12 twice a day - which is a doubled from his 6 daily. He is also back to getting GCSF (white cell booster) daily instead of every other day. We will go in again tomorrow morning to get another dose of IVIG and drop off blood counts to make sure the blood he got today is holding. We will follow up again on Monday. So needless to say, this is NOT the path we were wanting Mason to take. We just felt like God had taken care of the autoimmune hemolytic anemia issue so we were ready to start making some good progress forward. It is difficult seeing Mason go back on all the meds we worked so hard to get off of when we were discharged off the unit almost a year and a half ago. Wow! just typing that Mason is almost 18 months (one and half years) post-transplant is just crazy to me. Most days I feel like we did when we just came off the unit because we are still administering 10 oral months twice daily, hooking up daily IV meds and dealing with a cranky, tired and weak baby. Except, he is no longer a baby, he is a full fledged toddler in the sense that he is letting his opinion be known to the world. Where did the time go? I must admit, I feel like I've missed a year and half of his life because it has all been spent in hospital beds or hooked up to meds or fighting putting meds in his mouth. I shouldn't be complaining though, there are many of you back home in Idaho who have literally missed a year and half of Mason's life because we left in May 2005 when he was 8 months old and he hasn't been back home yet so you can see what a little toddler he has grown up to be. So I am so thankful that I have been able to be with him here the entire time. There are so many families out there that have not been able to be with their sick child or their loved ones while they are away seeking treatment, so again I am reminded that we can be thankful in ALL things. I am thankful Mason is still with us, even if everything out of his little mouth is "No", I'll take it! I am thankful for the provisions God has made for our family, allowing us to be together to try and create some type of normalcy for Jazzy & Mason through all of this ciaos. I am thankful for the healing He has brought Mason and will continue to bring to his little body. I am thankful for the wisdom He has granted to the doctors here at Duke so that they can treat all of these "side steps" Mason is taking in his road to recovery. I am thankful for every person who lifts up our family daily that encourages us and keeps us going. And most of all I am so thankful for God's grace and strength that is there every moment of every day to get us through it! As you can imagine, today's news was not what we wanted to hear, but we choose to not be discouraged because God has shown us so many times, that our moments of "darkness" with Mason are opportunities for us to drawer nearer to Him and know Him more and allow Him to lead us in His plans and purposes for our lives. Today, in God's perfect timing He allowed me to be reminded of His ever present "light" in my life and I wanted to share with you all the wonderful words written by Stormie OMartian "Sometimes only the step I'm on, or the very next one ahead, is all that is illuminated for me. God gives just the amount of light I need for the exact moment I need it. At those times I walk in surrender to faith, unable to see the future and not fully comprehending the past. And because it is God who has given me what light I have, I know I must reject the fear and doubt that threaten to overtake me. I must determine to be content where I am, and allow God to get me where I need to go. I walk forward, one step at a time, fully trusting that the light God sheds is absolutely sufficient." We are choosing to reject the fear we have with this "uncommon" auto immune neutropenia and choose to trust in God's light which penetrates darkness and cannot be put out " I am the light of the world. He who follows Me shall not walk in darkness, but have the light of life" John 8:12. We will choose to take one step at a time, fully depending on God to get us there. "You will show me the path of life; In Your presence is fullness of joy; At Your right hand are pleasures forevermore" Psalm 16:11 We choose to stand in His presence and have Him lead our paths, even if we do not know what the future holds. Thank you for checking in our Mason and allowing me to go on and on today, as you can see I really needed to draw on the power of God's word so that we do not fall into discouragement from today's news. Thank you for your prayers for Mason - keep them coming, they truly our a source of encouragement for us. Thank you for your messages (on Mason's guestbook www.caringbridge.com/visit/masonjenkins) and your letters and emails from this past week - we love hearing from you all. Please continue to pray for our friends who are in need of healing - Alexia, Kallie, Bryce and Sean as well as all of our other buddies: Cooper, Andrew, Ivan and Hailey. We love you all and miss you very much. Sending our love and hugs to each of you! In His Love & Care Eddie, Becky, Jazzy & Mason February 25th, 2007 Hello Family & Friends! Sorry for the delay in updating on Mason - it has been a crazy week and we are just know starting to get settled in from moving. We are praising God for the Coombs results that were done last week - NEGATIVE! Thank you Lord! Mason gave us a run for our money this last week - he was really tired and even had us real concerned on Friday. We came to clinic and he was running a slight fever of 99.5 and acting really tired and lethargic. Mason had slept from 10pm to 3:30am - a record for him, so needless to say we didn't have a restful night because we kept checking on him to make sure he was ok. While at clinic we talked with Dr. Prasad regarding our concerns and after looking at his labs he thought Mason had to low of a cortizol level so we started him back up on IV solumedral. His white blood was back down to 2.0 so we will continue to give him his GCSF at home every other day. Dr. Prasad said Mason's platelets are "clumbing" so we took him off of his blood pressure patch and switched his Prilosec because these may be contributing to his weird platelet and hemoglobin levels. His hemoglobin was back down to 9 so we will check it again on Monday to make sure it is not decreasing. We went ahead and drew cultures from his lines just in case and should hear back on those by Monday. We had to go back up to clinic on Saturday morning to get another dose of IV solumedral and check his cyclosporine level. The doses of IV solumedral seems to have helped him tremendously, as of today he is perky and playful and smiling and laughing again. Thank you Lord! We love seeing our lil guy feeling good again. We will continue to give him IV solumedral over the weekend and go in Monday for a check up with Debbie. He is still battling with his sinus stuff, but we are hoping the new antibiotic we started on last Monday is helping. It seems to have made him a little sick the first couple of times he took it, but he seems to be tolerating it now. Mimi (Eddie's Mom) arrived late Thursday night so we were all excited to have some much needed Mimi time. It was perfect timing due to our moving and Eddie's doctor appt and Mason not feeling well. Jazzy has been a little left out because of all of our distractions with Mason, but she is now getting her much needed Mimi time and hasn't noticed us coming and going. Mimi has been a huge help for Eddie and I this week. We are almost completely moved, hopefully by Tuesday we can clean the apartment and be officially moved out. It will be a very nice feeling to get moved and maybe even get caught up on some sleep (if there is such a thing) Mason doesn't know what to think of the new place, he doesn't want to sleep in his crib so needless to say we haven't been getting much sleep. He has been a lil night owl for the past couple of days - staying up til 3:30am and up by 7am. I guess that's what we get for not taking advantage of his one sleep night that he gave us Thursday night! I'm not complaining though, I am just so thankful that he is feeling better so we will party all night with him if we have too, just as long as he is feeling good. He sure has been enjoying exploring the new place which we will take full advantage of for his PT sessions this week. Thank you for checking in our Mason and our family and for your prayers. They are greatly appreciated! Please continue to pray for our friend Kallie as she is still battling with retaining fluid. Please also pray for our other lil buddies Sean, Bryce, Alexia, Ivan, Andrew, and Hailey as they are enduring this transplant journey as well. In His Love & Care Eddie, Becky, Jazzy & Mason February 16th, 2007 Please pray for our buddies Alexia, Kallie, Bryce, Andrew, Sean, Hailey and Ivan. Today is T+483 for Mason and it's been a busy day mixed with blessings and ciaos. We started the morning meeting a transplant family who lost their daughter to AML (leukemia) 9 years ago and through that loss has helped other transplant families. This special family has blessed our family from a distance over the past 2 years and it was a real privilege to finally meet them. Not only did it provide an opportunity to thank them for their willingness to reach out to other transplant families, but God reminded us that even though this long road to recovery with Mason has been difficult, we are immensely blessed and privileged to still have Mason with us. I'll save you all the details of our mixed day and move into Mason's clinic appointment to give you a break on reading my really long updates. Mason went to clinic and was taken off of the vancomyacin - Thank you Lord! His line infection cultures have been negative so far so we will discontinue the Vanc. His sinus cultures have come back Gram positive, it has not be identified with exactly what he has, so we will start him on an oral antibiotic to help cover this until we can identify exactly what is growing. Mason's hemoglobin came back on the low side again and his heart rate was elevated, so we prepared to give him blood... however at 4:30pm his blood from the blood bank was still not ready and it infuses for over 3 hours. Dr. Prasad gave us the OK to come in bright and early tomorrow morning for his infusion. We drew a Coombs level today because his LDH levels were a little off. These are for watching for hemolytic anemia. Please be in prayer with us that Mason is not going back to his hemolytic anemia days! We will hopefully have the results on these tests tomorrow while at clinic. It was nice to get off the vanc because it was contributing to his drained energy level. Not to mention he is battling a sinus infection and was recovering from a line infection... this triple threat is enough to knock anyone of us off our feet. He had us pretty concerned today because he was real lethargic and sleepy... never a good combination. Once we got to clinic though he perked up and was acting even better once we returned to the apartment. I would imagine he will feel even better tomorrow once he gets his blood. Another blessing brought to us today was the amount of love we received from var