All is well...

We've been BUSY in the Berger house!! Kev has been such an awesome provider that I have been able to enjoy my new (and sometimes challenging!) job as a stay at home mom. I have almost comfortably settled into the role ;) Lil Kevin started 3rd grade, Joshua started 1st grade and Aidan begins a pre K program this week. Looks like Raylee and I will get some "mommy and me" time without all the boys. Our life has become so normal... with occasional hospital trips and the trials and joys of having 4 kids - yep! We're as normal as a household of 6 can be :)




In August, Joshua went through his annual post BMT testing... this time he had a partner going through the tests with him. Raylee's annual tests were just a little different than Joshua's... both had to have an ECHO & EKG - and of course, the office visit/blood testing in the BMT clinic.

Joshua had a full body xray (that he was very proud of!) and a pulmonary function test. For the xray - it's important that you remain very still... I wasn't allowed in the room because I had Raylee with me... but the tech was very impressed that Joshua was able to complete the test in one try. This news even travelled up to the BMT clinic where Joshua was again commended! At 6 years old, he was also able to complete a pulmonary function test which basically measures how well his lungs take in and release air.



Raylee had to go through another day of GFR testing - just like she did in the very beginning to test her kidney function. The only difficulty she had was getting an IV placed. WHEN does this task get easy?? Her veins are still tiny and getting blood from her has been stressful since she had her PICC line removed.

At 19 months, Raylee is thriving well - she's weighing 20ish pounds, her hair is getting longer and fuller, she's talking a lot, you know - hitting all her milestones :) She received her 1st immunization in early August and had blood drawn recently to make sure her body responded well to it. We haven't heard any news on any test results for both kiddos... but no news is good news! She's on her way to "Joshua's status" - that is, only visiting TCH on an annual basis... woohoo! Like Joshua did, she will be able to complete her special round of immunizations at our pediatrician's office. This will be an aggressive schedule of immunizations that will catch her up to non BMT kids her age. Since a BMT wipes out all bone marrow - the patients are left with the immune system of a newborn. Just like you would be cautious with your newborn until they have those few important vaccines - the same goes for a post BMT patient. However, the BMT kiddos do remain on a prophylactic antibiotic for some extra protection... Raylee stopped her antibiotic at her year mark in August.


Again, I don't think I will ever be able to say "thank you" enough... for all of our prayerful family and friends, for all the "virtual support" we had along our journey... so I'll say again, from deep down in my heart ~ THANK YOU! I feel there is nothing I can do to return such kindness... until God showed me I can! I've learned prayer is a powerful tool and I will not use it sparingly. I am happy to "pray it forward."

I find myself constantly sharing our story with strangers... 2 babies born with a genetic abnormality and 2 babies born with a solution - 4 reasons to say, "Thank You Lord for all that You have given me... I will never stop telling Your miraculous story! Thank You for giving me such joy, for teaching me patience, for giving me strength, for renewing my faith and hope... for all of Your blessings... even the ones that are discovered under gray skies."

HAPPY BIRTHDAY RAYLEE!!

Little Miss Raylee is doing GREAT! She had a minor setback last week - Thursday she was diagnosed with the flu and admitted back into TCH for 3 days. Meanwhile, all the boys had the flu too. We must have depleted our pharmacy's stash of Tamiflu. But Hallelujah, today our home is flu-free and everybody has just about completed their round of Tamiflu.

Today Raylee went in for her regular check-up by the BMT crew. She's down to every other week clinic visits. All of her blood counts are great... and developmentally, she's catching up to other little ladies her age. She's been eating great - she responds to simple commands - knows a little sign language - says a few simple words - explores, even climbs the stairs, YIKES! She's still taking a prophylactic antibiotic and an IV antifungal nightly... hopefully she will be free from her PICC line soon. She's weighing in at 16 lbs 11 oz and is 27½ inches long - not bad for a rough first year in life!!

We're quietly celebrating her first birthday ~ of course, a crowd of six hardly makes a dull party! This little ladybug has a lot to celebrate... she hasn't reached the end of her journey but the beginning is an itsy bitsy spot in the rear view.

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Day 88 for Raylee ~ 3 years post BMT for Joshua

Last Monday, I took Raylee to her visit then rushed back to Spring to take Lil Kevin to the pediatrician... the verdict for Kevin - a virus! He had a rash all over his face and chest that I thought was a "strep rash" - we had gotten so used to seeing it on Joshua, I just assumed that's what it was. Well he was straining so much from vomiting that it was petechiae - or broken blood vessels. Poor lil man... with continued over the counter meds and TLC, he is just about 100% now.

As for Raylee... I was on cloud 9 leaving TCH Monday! Her weight was up and her counts continue to impress -so- they took her off IV TPN - WOOOHOOO!!! She is still doing IV Caspofungin - but that only takes 45 minutes to infuse and there is no preparation. This is a trial run, of course. If she begins to drop weight or stops eating, she'll have to go back on IV TPN. As of Friday's visit - everything is still great. It has been equally as blissful for Raylee - she's beginning to move around a lot - but the IV tubing restricts that. Plus, she's no longer awakened in the middle of the night from being wound up in her tubing. Hopefully, she'll be relieved of her reverse isolation status soon and able to show her face in public :)

Our Joshua made 3 years post BMT just after Halloween! With all the oral meds he was on and the round of chemo he underwent - his teeth are left in bad shape. Unfortunately, we were told to expect a similar situation with Raylee's teeth. I knew it was going to be bad news when "I" could see decay in Joshua's molars. I took him to his first dental visit on Thursday. He was a star patient - of course, he's had so much practice at the playing the role of patient.

I took him to a trusted old friend who has sedation capabilities for dental procedures in his office. After looking at Joshua's xrays and an oral exam - the dentist was not ready to attempt Joshua's dental needs - he refunded me for the entire visit and recommended a dentist that he trusted would be able to handle Joshua's "oral work load." So, I'm praying that I can get him in and fixed up soon - according to his xrays, some of the decay is awfully close to the nerves... oral pain and ear pain have to be the worst - Joshua has alreaddy had his fair share of ear problems, to say the least.

Day 80

Last Monday was a LONG day at TCH. First, Raylee had her PICC line reinforced with new stitches. I took her to the room, she was wrapped up tight with blankets (leaving the right arm & PICC line accessible) and then strapped down to the table with a large velcro strap. She looked scared. Then they asked me to leave the room and wait in an area far from the room. WHAT?! Are you kidding?? Raylee was looking at me frightened and confused - and I had to leave the room?! I stepped outside and instead, stood right by the closed door; I could hear everything through the door... I was told that they'd inject a local anesthetic, wait for it to take effect and begin stitching. Immediately, I heard crying... it was the longest 10 minutes... the crying never ended and I couldn't hold back my own tears either. Finally, I saw the doctor come out the door far down the hall and look for me in the waiting area. I quickly wiped tears from my eyes and he turned around, saw me but went back in... he shortly appeared at the door I stood outside of and told me to come in... I walked in and Raylee was whimpering in the nurse's arms - she assured me that Raylee felt no pain but did not like to be strapped down. Knowing Raylee, I could believe that she hated the restraints - and could only hope that the pain was actually minimal.

The rest of Monday's visit was lots ...and LOTS of waiting. Her counts were good with the exception of her slowly dropping hemoglobin. We had to wait on the pharmacy to send up her dose of Erythropoeitin. This is the hormone that would help her RBC production. This should help her hemoglobin counts to stabilize and hopefully, prevent any more transfusions. So far, it has helped... after Wednesday's blood counts - her hemoglobin showed a very small increase -BUT- that is a large step in the right direction.

Meanwhile, a virus has hit the Berger household. Everyone has been affected by it - EXCEPT ME! It's amazing that I have this awesome immune system - it is a RARE occasion that I get sick - yet, I've reproduced 2 children with immune deficiencies! Tuesday, Raylee started to show a rise in temperature... I've been instructed to take her to the hospital if it reaches 100.5°. I was alone with 4 kids (Kevin was in New York) and didn't want to haul everyone to the ER in the middle of the night. I gave Raylee Tylenol because I knew that she had her next clinic visit early Wednesday morning.

Raylee was just as happy as can be Wednesday upon arrival - her vitals were taken and her temperature was normal. I told our NP what had happened. Well... I made a mistake. I was not supposed to give Tylenol - as this masked any possible bacteria that might have been brewing. I was told next time this happens to pack my bags and head up there.(PLEASE LORD, do not let there be a next time.) See, I knew that a high temp would mean a nice stay in the hospital... They need to draw blood for cultures during the high temperature... I either dodged a bullet because it was just a viral infection -or- it was bacterial, masked by the Tylenol and sure to come back. But, if you spent any time with Raylee lately - you'd be convinced it was viral... She's had no more fever, very playful, eating well AND her nasal wash from last week did come back positive for Rhinovirus.

On Wednesday, Raylee was also due for her next dose of IVIG... So, with blood products she is premedicated with Hydrocortisone, Tylenol and Benadryl... I'm guessing all that was a huge help in attacking any lingering symptoms Raylee had. For sure, the Benadryl has helped with her congestion. And Hallelujah - we had the rest of the week off from the clinic!! Raylee isn't due back til Monday :)

As for Aidan and Joshua - they are feeling much better too. Please pray for Lil Kevin. He is getting hit late with this bug. We all know that he may be the biggest 7 year old UT football fan... he's been to all the home games this year (and even the big -disappointing- Red River Rivalry.) This morning, his daddy packed up Joshua & Aidan to go... Sadly, Kevin felt so horrible that he stayed behind with me. He was so excited to go because Colt McCoy (his favorite QB) was making an appearance to retire his number. Instead, he's passed out on the couch and pops up every now and then, "Mom put it on the game. Is it on yet?" My poor baby... I can't even touch him too much because I have to be careful not to pass any germs along to Raylee. But he knows the importance of keeping Raylee healthy... he's being a good sport.

Day 74

Have I mentioned before how much Raylee hates eating?!?! Her nutritionist wanted me to record EVERYTHING she ate this weekend, bring in the detailed report on Monday - comparing this information with her weight, they'd decide if she could stop TPN. I was elated at the prospect of ending TPN - and I prayed that Raylee would miraculously eat more... Sadly, my battle of getting her to eat continued. She does well with the bottle - though she only takes in 5 ounces of formula a feeding. BUT she DOES NOT like baby food... she acts like I'm hurting her! My boys used to guzzle down the jars... I can barley get the spoon in her mouth - and I've tried every kind of baby food... some of them I have to hide from Aidan - that boy still eats everything! We'll see what they have to say...

Meanwhile Raylee's blood counts are awesome. She only had to go to the clinic 2 times last week - no transfusions, by the way! Although, her hemoglobin is slowly decreasing. Monday, they may start her on the medication that helps replenish hemoglobin. I was told that it would be harmful - but that was a mistake; it will be safe. I hope and pray that they keep her on 2 visits a week... for now, it will be decided at each Monday visit. What a happy day it will be when she is on Joshua's clinic visit schedule - ONCE A YEAR!

Two Fridays ago, while I was changing her PICC line dressing, I noticed that the remaining stitches on the plastic piece at the base of the catheter had come undone. Imagine my surprise when about 3 inches of the tubing slid out of the hole in her arm... I don't have a very strong stomach and I panicked a little. I had to slide it back in while Kev held the end in place so I could continue cleaning the area. Last Friday, they changed it in the clinic and decided it was ok -but- they will need to re-suture the piece back down to her arm... she will have this done Monday morning.

Day 67

Raylee is still doing great ~ Just looking at her, you'd think she was like any other baby her age. However, her bloodwork is a different story. This whole time her bone marrow has been in recovery, her counts tend to go up and down. This wasn't an issue because "all the right cells" were maintaining and staying within the normal range of a post BMT patient. Her platelets continue to rise and are almost in normal range for her age. On the other hand, her hemoglobin does not seem to replenish as easily - she is good after a blood transfusion but will slowly decline and require another transfusion.

After Friday's blood draw, Raylee's hemoglobin dropped to 8.7 - at 8, a transfusion is needed. There do not seem to be any answers as to why this is happening - we will wait to see how she continues to recover. I'm guessing that she'll get blood on Monday's clinic visit. There is a medicine that they usually give patients to give their hemoglobin a boost - but I was told it would not be safe for babies under 12 months. Looks like Raylee's hemoglobin needs a boost of prayer.

With Raylee's immune system still recovering, she needs extra protection from common bacterias - pneumonia being a major one. She was on her old antibiotic, Bactrim -but- her liver may be having difficulty filtering this drug. They cancelled this week's Bactrim and she was given a special breathing treatment of Pentamidine. If you've ever had to use a nebulizer on your child for asthma or other breathing problems, this is basically the same thing... and Raylee DOES NOT like it. The respiratory therapy nurse and I had to hold her down for the 20 minute treatment while she was crying - she was bright red and sweating! Because the fumes can be harmful to others in the room, everybody present has to wear these heavy "duck bill looking" masks.

My parents have been so great to help us throughout this whole process... Kevin was working in West Virginia last week - they'd drive Raylee to TCH for her appointments and I'd meet them there after a quick shift at MD Anderson. Of course, they also had Aidan with them - on Friday, he wanted to stay with mommy too... How could I say no?? This boy is a "daddy's boy" and it is rare that he wants to be with ME... I don't understand WHY, I'm 10 times more fun than Kev ;) Not knowing we'd have to wait on respiratory therapy and give Raylee a breathing treatment, I said yes...

The nurse and I were in the middle of what appeared to be a torture session for Raylee... I had my back to Aidan, facing Raylee in her stroller - suddenly I see his little head over the top of the stroller quickly headed toward the nurse - I looked over the stroller and saw Aidan kick the nurse's leg... I yelled as loud as that heavy mask would allow me, "Aidan get back over here!" I was so embarrassed - the nurse stayed focused on Raylee. Then Aidan starts yelling, "Bite her Raylee...just bite her!!" I tried to explain to him that the nurse was helping Raylee not hurting her... I looked over at him and all I could see were 2 little, angry eyes hovering over a "duck bill" mask and under a furrowed brow, locked on this poor nurse holding down his screaming baby sister. After it was all said and done, he apologized to the nurse. She was great, just chuckled and assured me that nobody would ever hurt this little girl.

Day 59

Two sick boys, two boys in school, a travelling husband, work, a root canal and postBMT clinic visits... these are just a few reasons why I have appeared to be a slacker with Raylee's updates. Since I last reported, Raylee has had 6 clinic visits, IVIG and blood transfusions and a CT Scan. The CT Scan showed that the spot on her lung continues to get better... the fungal infection has also improved. However, we are still connecting her to the IV Fungal treatment every evening -and still- giving her the IV TPN as well. THIS is becoming very tiresome... of course, I will do anything to keep Raylee in good health - BUT I will be so relieved and happy when we can finally get this PICC line removed.

She is still considered underweight - 13 lbs 14 oz at 8½ months - but it's good that she's not losing weight. We are trying to get her interested in eating more. So far, she is pretty finicky; but, she has done well to keep food down without using tons of Zofran.

Past lab results prove that Raylee is 100% donor cells. These cells appear to be functioning correctly with no signs of LAD. Her immune system is still being suppressed with Tacrolimus to prevent graft vs. host disease - the Tacrolimus doses are slowly decreasing. She has begun an oral antibiotic to prevent pneumonia and cover other bacterial infections. Her blood counts are looking great.

The clinic visits are still 3 days a week... I'm hoping that these will drop to twice a week soon - it's challenging to schedule these around both of our work schedules. The nice thing about the clinic visits - I feel like these people have become a part of our family - I also miss seeing and chatting with the nurses and staff on the inpatient side... even Raylee is happy to see them when they visit us on the clinic side.