A Journey thru a Bone Marrow Transplant

All is well...

2011-09-05T18:30:00.010-05:00

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!!

2011-01-19T18:30:00.001-06:00

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

2010-11-07T11:00:00.005-06:00

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

2010-10-30T14:00:00.009-05:00

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

2010-10-24T16:15:00.006-05:00

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

2010-10-17T19:00:00.002-05:00

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

2010-10-09T12:00:00.003-05:00

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.

Day 45

2010-09-25T21:30:00.006-05:00

Last Saturday, Raylee's potassium level dropped back within a normal range -and- we were in and out quickly. That was my last weekend before I began my first week back at work - surely, it will get better; I didn't seem to have much spare time - I feel exhausted. My 4:40 am wake up call was snoozed off more and more as the week progressed...

Monday clinic visit: Raylee's hemoglobin dropped and she had her first outpatient blood transfusion. That was a long day in the clinic, didn't leave til 5:00 pm. The rest of her counts were fine. IV TPN and Caspofungin will continue at home.

Wednesday clinic visit: Raylee's hemoglobin and platelets look great; however, her WBCs and ANC drop a bit but are still in acceptable range. Labs for cell typing and function are sent off - they want to make sure that the donor cells are still present and are able to do their job. IV TPN and Caspofungin will continue at home.

Friday clinic visit: Raylee is improving beautifully. Apparently, her nasal washes are yielding great results because they didn't send her straight to an isolation room - she was able to visit with the other outpatient BMT folks in for clinic. And her counts look great... although, we still haven't heard of the cell typing and function results. IV TPN and Caspofungin will continue at home.

A small miscommunication lead to MY first time to change Raylee's PICC line dressing... a small success. I will have to take a picture of this next week... it looks much scarier than the central line. There is a triangular plastic piece at the edge of the catheter that is anchored in by stitches... some of the stitches came loose. It does not appear to hurt her - I'll definitely bring this up in Monday's clinic visit. I can't wait for the clinic visits to go down to twice a week. They were so right in repeatedly telling me that Joshua's and Raylee's experiences would be different. Now that I look back, Joshua was a "warm up" to prepare us for Raylee's experience! But I will be thankful because I notice that there are other children whose experiences are more eventful than Raylee's... I will always keep these children in my prayers.

Friday at work, I got a phone call from the school nurse - Hmmm... a medical issue not involving Raylee... nor Joshua! Lil Kevin had a temp of 102.9° and complained of sore throat (the school nurse informs me that strep throat is going around.) Earlier in the week, Aidan had gotten some high temps that went away with Tylenol & TLC... he must have passed this to Lil Kevin. I took both little guys to the pediatrician - strep passing around in OUR house would definitely buy us a trip to the lovely inpatient rooms at TCH! Turns out it was just a virus. We've been keeping Raylee away from the boys - much easier said than done.

I have to throw in... when my mom picked up Kevin at school, he was crying because he did not want his little brother to be left at school alone. The school nurse assured him that Joshua would be helped on and off the bus... the whole time I was with Kevin, his main concern was Joshua... when we got home, he ran in to find Joshua and hugged him. Nope, "the love" is not always this easy to spot among the Berger boys -but- moments like these prove that IT DOES exist!

My handsome dad turned 66 today!!

Slideshow made with Smilebox

Day 37

2010-09-17T22:30:00.002-05:00

What a long day... in by 9:00 am out by 3:30 pm. After all the results from the blood tests came in - they found that Raylee's potassium level was too high. It could be the combination of all her meds - plus there is potassium added into her TPN. New TPN was ordered without potassium and tonight's Tacrolimus was cancelled... she has to go back in tomorrow morning to recheck her levels. Yes, that's right - we're going in on a Saturday morning.

On a happier note... they're stopping the Voriconazole (the anitfungal med) because it seems to be causing too much vomiting. They're switching it to Caspofungin - an IV antifungal med. She was given Caspofungin many times as an inpatient and it worked wonderfully... no side effects. She had to get the first dose in today's clinic visit - it runs for an hour. I will have to figure out a new schedule at home to give her the Caspofungin and follow it with the TPN.

I'm praying that her PICC line holds up for as long as she may need it. Because her skin has been so sensitive to the adhesives, the Vascular Access Team came in to change her dressing (early) and assess her skin abrasions. More skin was broken while removing the dressing -but- the wounds from the last change have healed well. She was given a lighter dressing to allow the new wound to heal and will need to be assessed again Monday. A skin protectant was put on the bare new wounds and it already looks better. However, it will be challenging to keep up with this skimpy dressing.

The rest of the visit was pretty eventful... she had another nasal wash - so far nothing alarming showing up on the nasal washes, thank goodness! Her weight dropped a little - probably due to the extra vomiting. Her hemoglobin and platelets are slowly dropping - both still within range so, they're not too worried. And she had a chest xray that still showed the same old pneumonia spot. Again, they're not too worried about this since it is not becoming any more dense. Hoping tomorrow's bloodwork will produce improved results and we'll be in and out quickly...

Day 35

2010-09-15T22:30:00.004-05:00

Clinic visit number 3 - still no transfusions needed! Raylee's bone marrow seems to be working very well - although, it appears to be battling something. Perhaps it is all the skin issues she is having -or- the fungal infection that popped up on her labs -or- the Rhinovirus that was revealed from her nasal wash??

I bathe her everyday with a special surgical soap and generously apply a heavy lotion afterward (this was an everyday routine as an inpatient.) Plus, she has a prescription ointment that is applied at least 3 times a day. She was also put on an oral antifungal med - the one that made her nauseous previously. I am trying to schedule her Zofran around these doses... and also keep it close to her feedings which she is already having issues keeping down. So far, I'm not having much success at curbing her nausea and vomiting.

Now throw in her scheduled IV TPN dosing, Tacrolimus doses, (all meds need to stay within a strict time frame) her mouth care, 2 boys in school, 1 boy feeling left out that he's not in school, driving back & forth to TCH, normal motherly duties AND I am a little tired ...ummm, and can you imagine what my house looks like? :( I can only ask people for help if they are in good health. My wonderful parents & sister drop in to clean when I have Raylee out of the house. AND I come up with creative ways for my brother to help - had to get him to sit in the car with the kids so I could run in to buy Raylee formula - she's not allowed to go in crowded stores. Soon all my kids will be in perfect health and this temporary struggle will only be recalled by skimming through this blog.

Thank you to my family and friends for continued support and prayer!
Heavenly Father, I believe You will increase my patience and strength, I believe You will help me to be courageous and relieve me of my fears, I believe You will surround me with love and encouragement...Thank You for being with me and my family wherever we may go... In Your mighty name, Amen.
(Joshua 1:9)

Wanted to share this pic from Day 34 for a few reasons: 1. She's super cute! 2. She's AT HOME in her own crib. 3. She's wearing an adorable shirt from Aunt Christy and 4. To Thank Aunt Dora for making these beautiful blankets - we love them!!

Day 30

2010-09-10T22:20:00.004-05:00

And so begins Raylee's clinic visits... Upon arrival, a brief survey of health and vital signs are taken. Since Raylee has a runny nose, she is immediately put in isolation to protect the other patients. Her blood pressure and blood oxygen were great... I was worried about her temperature because she has been spiking low grade fevers. I am assuming this is due to her 2 front teeth breaking through. Her temperature was perfect. Her weight is slowly climbing... she will be 8 months next week but only weighs 13 lbs 7 oz. After vitals, her blood is drawn for several lab tests. Then our favorite Nurse Practitioner, Marika gives her a physical exam. Finally, decisions are made when the labs are ready - Raylee's number were great! No transfusions were needed today. AND THIS is how a typical clinic visit goes. Since Raylee didn't need any transfusions today, it went by rather quickly ~ in by 8:30 am out by 1:00 pm.

One extra thing in clinic today - removing the bandage covering the site of the central line. The skin around the wound looks terrible from the frequent removal of adhesive dressings. There is also lots of discoloration caused by the chemo, called a "Busulfan Tan" - which is now in the "Busulfan Peel" stage. We were sent home with prescription topical cream for the affected area. The wound is still covered by steri-strips - which is an adhesive to help close the skin/incision... these will painlessly curl up and fall off on their own.

It has been WONDERFUL being at home. We have only encountered one tiny bump in the road... we were assigned a less than perfect home health care nurse. Raylee still gets TPN by IV every night - it is ideal for the parents to be independent in managing the nightly IV needs. I am familiar with the procedure from managing Joshua's IV fluids, 3 years ago - naturally, I needed a refresher course. I was not shown proper aseptic technique (luckily I have acquired good aseptic technique habits from my job) and was not properly taught to assemble the TPN nor to use the pump. Last night was pretty challenging... I had to walk through some steps on the phone with the pharmacist. I was forced to report the nurse and we were blessed to be reassigned to Joshua's old nurse - what a breath of fresh air she was!! Thank goodness she will be the one to teach me dressing changes next week... I'm NOT looking forward to that - Joshua was more of a screamer, I did not look forward to doing his dressing changes but he was manageable... Raylee is a screamer AND a mover! It will definitely be a 3 person job.

Day 28

2010-09-08T22:00:00.005-05:00

First things first... RAYLEE IS HOME!! After 65 days in the hospital, it is so good to be home! I was crushed when I learned we could not come home yesterday. They had told me that they'd be able to pull the central line and place the PICC line all at once - a sure ticket home. Moments before they took Raylee into the OR, the anesthesiologist approaches me and questions why Raylee's blood is so thin and why her platelets are so low - for a BMT patient in the midst of engraftment, her numbers were great -but- compared to a normal kiddo's numbers, it would be unsafe for them to pull the central line and her not be able to supply enough platelets to stop any bleeding - her blood being so thin would add to possible complications. After a pretty quick PICC line placement, we were sent back upstairs with the old central line still in place.

Around 1 pm, they decided to proceed with a 2nd sedation and pull the central line after a transfusion of platelets. At first, they didn't want to do this because it is tough to "starve" (NPO) a baby twice in one day - she can't eat 7 hours before sedation. The morning procedure wasn't too bad since she slept thru the NPO order. The Benedryl (premed for platelets) helped her sleep through most of the 2nd NPO order -also- with the new PICC line, she was able to get IV fluids to help hold her over. The 2nd sedation went smoothly... her chest is now free from the bulky, uncomfortable lines - though she has a new nuisance in her right arm.

We are all together again at home, happy - but not without caution. Raylee's visitors are limited - no large crowds, no sick visitors, and we have to enforce good hand washing. Her temperature must be monitored - if it reaches 100.5° or more, she has to be admitted back to the hospital. She can't leave the house, except for clinic visits - in this case the patients are supposed to wear a special filtered mask - which Joshua was always so good to keep on... but these are not made small enough for infants. So, Raylee is supposed to wear a surgical mask; but, SHE DOES NOT LIKE IT - lucky for us, placing a heavy blanket over her stroller will suffice.

At the risk of sounding partial, Raylee has the most amazing disposition... just about every new surgeon, anesthesiologist, nurse, TCH employee she met yesterday commented on how happy and smiley she is - and that most NPO kiddos would never flash a toothy smile at them. The doctor and the new fellow came in to examine her before discharge - she was very playful and smiling - the fellow says, "Oh wow! She smiled, she's never smiled." To which the doctor rebutted, "Oh this one smiles at everything, she's very happy - if you haven't seen her smile, then you haven't been in here enough!"

Day 26

2010-09-06T16:00:00.004-05:00

Well the walls are bare and we barely get any drop ins from the nurse or PCA anymore... I am almost fully packed and ready to head home. -BUT- it could be a couple of days before Raylee can leave room 44. Still, She is doing perfect and eating well. Her numbers continue to look marvelous - again, no transfusions needed and her ANC is 2090 (no, that is not a typo.) Even the nurse said ~ clinically speaking, there is no reason for her to be here - we should be relaxing at home on this Labor Day. It seems from the very beginning, Raylee has been dealing with issues from her line! To begin with, she was unable to get a PICC line because her veins were too small to support a double lumen there... NOW she only needs a single lumen. So it feels like we're back at square one - waiting to see when Raylee can get on the schedule for a PICC line -PLUS- it is a "surgery" to have the central line removed. -IF- they are willing to pull the central line while they have her anesthetized to place the PICC line -then- we could go home tomorrow (provided that we get on tomorrow morning's schedule.) On the other hand, she will be sent to "Day Surgery" on a different day to remove the central line - she can't be sedated twice in one day... which means, we could be here til Thursday. In this case, I might break down and cry... on Wednesday my FMLA expires and I am to report back to work Thursday morning. Now if I can just keep my mind focused on the positive... after all, she'll just be confined to the house once she's discharged... wait! Was that negative again?? Ok, I might need to recharge the batteries of my optimism... ;)

FYI: This is day 63 in room 44 ~ it is only Day 26 post-transplant.

Day 25

2010-09-05T17:38:00.017-05:00

I know, I know this picture looks grim and gloomy ~ but it is only to show that every face she makes is cute. But look a little closer....notice anything different?? She has no lines attached!! The IV pole with all 7 pumps attached is sitting all alone and unused in the corner of the room. We've been enjoying walking around to parts of the room where the power cords can't reach. Well...that is the good news of the mess that happened last night. The nurse was about to start her IV nutrition(TPN) - she first flushed the line with saline and Raylee started screaming! Lifted her shirt to find that the line busted and was leaking underneath the dressing. They had to pull off the dressing, clamp the lines and patch it up until the Vascular Access Team arrived in the morning. She was going to miss her overnight TPN - to prevent them from placing a peripheral IV, I had to wake and feed her every 3 hours.

Without all the IV traffic into her body, she's eating really well! Plus, she's been able to take the rest of the IV meds by mouth. Although, she had to suffer through a little heel prick for her labs this morning... which by the way, came back with awesome numbers. Her ANC is up to 970 and she has been maintaining hemoglobin and platelets... she hasn't needed a transfusion since Tuesday. That being said, I'm not sure when she'll be discharged now. The blue lumen of her central line is occluded - the red lumen works perfectly; however, it is possible for a non-working lumen to affect a working lumen... plus this is a potential site for major infection. Two cultures were sent off with blood from each lumen, this morning.

The "big cheese" will come see Raylee tomorrow - we'll have to wait for his verdict. The Vascular Access Nurse believes (and has reported) that her central line needs to be removed. The central line is needed after discharge to draw labs, if transfusions are needed, home health care (Raylee needs TPN at home) and in case the patients need to be treated for infections (Joshua was readmitted after discharge to be treated for RSV.) It's a bit depressing to lose our pending freedom from this room -but- it sure is nice to be free from that IV pole!

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33 NIV

Free slideshow customized with Smilebox

Day 22

2010-09-02T22:00:00.002-05:00

It is my little man, Aidan's birthday. When Joshua was 5 months old, I discovered that I was given a surprise gift from God. The very first person to find out I was pregnant for the 3rd time was my dear sister, Rhea Ann - she eagerly waited in the kitchen after urging me to buy a pregnancy test. Stunned and overwhelmed, I walked out with a straight face... knowing me as well as she did, her face lit up as if she had just won a million dollars. Rhea Ann LOVED babies... a month later she was diagnosed with stage IV colon cancer. The day I was to find out Aidan's gender - I had went to visit Rhea Ann in her hospital room, just down the hall from where I worked. I walked in, she sat in her bed, weak and worn, but she managed to give me that same enormous smile - before I even went to my appointment she happily informed me, "It's another boy!" She loved my first 2 as though they were her own. The day we said goodbye to Rhea Ann, the moment I felt the goosebumps consume her arm, I felt Aidan vigorously moving in my belly - I believe he sensed the angels who escorted my sweet sister to her new home... 3 months later, the same angels were present to welcome Aidan "Ray" Berger to his new home. Little did we know that God already had a plan for his life.

I had been having contractions on Friday night -but- Saturday was "Game Day" ...yep, IF you know my wonderful husband, you know exactly what I'm talking about. His addicti...eerr...umm...love for the the Texas Longhorns. He got up bright and early and drove to Austin, assuring me he would answer his phone if I called... Sure enough, I had to call! I called and no answer -so- I put the game on TV and waited around til halftime, when it was quiet enough in the stadium for him to hear me ringing. He drove all the way back to Spring and then drove me all the way out to the medical center from Spring... and wouldn't ya know, Aidan waited around till 11:45 that night to make his debut - Gee Kev! You could have stayed for the whole game, sorry about that! (heheheeee!) I really love this man, I knew exactly what I was getting myself into - his first words after seeing me for the first time as his bride, right there on the alter in front of all our friends and family - he whispered, "The horns won 45 to 17." Aww thanks honey, you look good too :)

My little Aidan Ray of sunshine saved his big brother's life about 14 months later... our tiny, unsuspecting hero. Even today, Joshua and Aidan are nearly inseparable - you could say, they are joined at the hip... or bone! I imagine, Lil Kevin and Raylee will have that same special bond. And by the way, Raylee is now considered "engrafted." Her ANC was 810 today! She took her first dose of Tacrolimus by mouth and the IV drip on that will stop at 1 am. The IV antibiotics were stopped earlier this afternoon. She will have to go home on the IV nutrition - but at least the number of tubes connected to her will be significantly less. Her blister is much better (and doesn't stop her from sucking her thumb!) She is still having a very rough time withdrawing from the Dilaudid. Please keep praying!! If you notice discoloring or splotching on her face, they say it is caused by the doses of Bulsufan. Overall, she has the doctors breathing easy. Her Monday discharge is still tentative but is looking more and more possible each day.

Day 20

2010-08-31T19:00:00.005-05:00

This morning, my mom informs me that Lil Kevin and Joshua ran to Aidan's bed to say goodbye before they took off to school - when Lil Kevin excitedly told Aidan, "tomorrow, we'll all be together again... me, you, Joshua, mommy, daddy and Raylee!" For the rest of the day I've been contemplating a way to tell him news that will shatter his expectations.

While Raylee continues to improve, the doctors have given an "ambitious goal" of discharging her on Monday. Her ANC today was a whopping 660 - up from a slight decrease yesterday (420) - and her Engraftment study came back as 100% donor cells. However, her fluctuating weight, lack of eating, her possible dependency on Dilaudid, and pending liver studies are preventing her from leaving as early as 3 consecutive days with an ANC of 500. Being that she is so little, they want to make sure she is more stable before sending her out - I can appreciate that... as much as I want out of here - and to tell you the truth, I had to delete a little rant of my frustrations - as this is not about ME. Though I think that "hospital life" is starting to get old for Raylee too... her health and safety are most important.

Yesterday, seemed so gloomy - with the small decrease in ANC plus there was a dilemma with one of the lumens in her central line. She was disconnected from it the whole day, which meant she was not getting her continual dose of Dilaudid. After trying 3 different chemicals to clear the lumen - they performed a Line Study that showed it was not blocked. I'm guessing it was a combination of prayer and all the chemicals that finally got it working again. Meanwhile, it seemed that Raylee was anxiously chomping down on the thumb that she sucks - leaving a huge blister... which now must be monitored for possible infection. Her continual drip was restarted for the evening -but- this afternoon they stopped it, leaving access to the button on an "as needed" basis... so far, it has been a little rough, she's quite cranky.

-BUT- PRAISE GOD for all the positive things!! She's 100% donor cells, her ANC is 660, she ate on her own twice since yesterday. She could use a boost of prayers... in addition to healing and comfort while weaning off Dilaudid, we need her eating more and she CAN'T get a fever. Soon enough, the beeping of the IV pumps will no longer ring in our heads... the doctor's "ambitious goal" will be Raylee's easy achievement.

Create a slideshow design

Day 18

2010-08-29T15:00:00.001-05:00

Yesterday, we had "Berger Family Fun Day" right here in room 44. Raylee was happy to see all the boys...and they were just as happy to see her. Lil Kevin assuredly declared that Raylee would be out of here in 4 days... maybe he has a direct line of command to the cells rapidly dividing in her little body?? I said, "I hope you're right, baby - you just pray real hard about that." He remained pretty confident, not letting my small signs of doubt sway his decision. This morning, Raylee woke up to an ANC of 460! -AND- with the same amount of hair she went to sleep with... I thought for sure she'd go bald, like Joshua. The doctors came in and joked that they'd like to stay and play with the cutie in room 44 -but- "there's nothing wrong with her; so, we have to go." they said. Today, they will begin to wean her off the Dilaudid... maybe we will go home in 3 more days, maybe we won't ~ but what a great reminder to pray to blessed with the pure and infinite faith of a child...

Day 17

2010-08-28T14:30:00.001-05:00

The fancy little Ladybug is back... well actually, after a brief break from the bows and cutsie outfits - she wasn't too fond of the bow on her head... but as usual, she manages to brighten the room by smiling through discomfort. As she also did during yesterday's repeat ultrasound for her enlarged liver - hard to get a baby to sit still during a lengthy test. The results came back showing early signs of hepatic veno-occlusive disease, a potentially lethal complication for BMT patients. Based on her bloodwork and a visual exam (look at her yourself!) - it doesn't seem to be progressing and the doctors are hopeful that it will reverse on its own. The VOD patient will tend to have an abnormal bilirubin count, retain fluid, gain weight and of course, the enlarged liver. Thanks to the Lasix, Raylee's fluid retention is down and accordingly, so is her weight. The doctor came in and felt that her liver is smaller than yesterday... and her bilirubin counts have always been in range. The only indicator of VOD was an abnormal blood flow, as seen by the ultrasound. She will have another ultrasound Monday. We'll keep this under control through prayer...

The not-so-good news is always followed by the GOOD News... Raylee's ANC is up to 300!! Wooohooo... I can almost feel the moist, 100° Spring, Texas air on my face. The doctors are very pleased with her progress. They have already ordered an Engraftment Study to see if Kevin's cell are steadily taking over Raylee's immune system... results should be in Monday. I know Raylee is already feeling the effects of her big brother's cells at work - the mucositis is nearly invisible. I must make a minor correction - the redness surrounding her eyes was believed to be mucositis, NOT conjunctivitis. Her eyes are almost back to normal (with the exception of the loss of her eyelashes - chemo causes potential hair loss all over, not limited to the head.) I am so happy that the bleeding in her mouth has stopped. Her wonderful new friend, Miss Teresa, made her this beautiful white taggie blanket - I gave it to her this morning and she fell in love. I think she's equally as happy to nibble on these without the pain of the mouth sores... it was tough to get her to sit still with it for the picture :)
Thank you Mrs. Montgomery!!

Day 15

2010-08-26T14:00:00.002-05:00

So... I had an epiphany... how often in life does one have the exact same epiphany TWICE?! It came to me once in 2007, it's so important that I'm not sure HOW I forgot THIS time. The value given for ANC is supposed to be multiplied by 1000. I remember talking to a family when we were here with Joshua and being so worried that Joshua's ANC wasn't anywhere near their child's value - it was then I saw the units on the count sheet and inquired... Joshua's counts had been rising so much faster than I realized. I can't believe I just went through the same worry with Raylee. Her ANC today is 0.13 which is actually 130! Remember, she can be discharged when the ANC is 0.50 x 10³ -or- 500 for 3 consecutive days. Sometimes you have to be very proactive to get ALL the information - the little things are not always offered to you.

Raylee is still doing well... very perky and playful while awake. Her mucositis is healing. I'm in the process of trying to get her eating again... no success yet. She is getting all the nutrients she needs with IV nutrition. Consequently, she is retaining too much fluid, she is gaining too much weight and her liver is enlarged. Yesterday, we got out of the room twice for an ultrasound and xray to take a better look at her abdomen. There is fluid retention; and also, signs of stress in the kidneys. They are beginning to reduce the amount of IV fluids going in, increased Lasix (a diuretic) to four times a day and have cancelled today's Tacrolimus. (Tacrolimus tends to kill kidney cells.) This morning, her weight was down a tiny bit - she gets weighed 3 times a day; plus, they measure her abdominal girth, which has also decreased minimally. But they will keep a close eye on her liver and kidney issues... a Renal Team should be in today to review her situation.

The past few days, Raylee has gotten either platelets or blood transfusions. Her platelets are down to 18; so, we're waiting on the platelets to come in for today. They're not too concerned that her ANC keeps fluctuating - it seems that her WBCs are doing a great job at attacking the mucositis... so, I find much more comfort instead that her pain is subsiding. Not to mention, that her monocytes are staying high, which is also a good indicator of engrafting. I am going to stay optimistic that the healing in her body will clear the way for her ANC to jet up quickly. After all, once she's discharge from here, she'll still go through 3 clinic visits a week, for up to 8 hours a day.

Day 12

2010-08-23T18:00:00.002-05:00

Raylee is still improving... her monocytes are steadily climbing, up to 45% from yesterday's 39.2% - her ANC is fluctuating a bit - we're told because the WBCs that she has are most likely out to fight off the mucositis. Well THAT sounds like music to my ears - because her WBCs weren't able to do this before! I just can't stop gloating about how wonderful it is to see her smiling and playing... what a testament to the power of prayer - AWESOME!!

Today was also a very special day for 2 young men... Our awesome hero started his first day of 2nd grade. My precious Kevin, may your mind be open to receive all the knowledge needed to get you into that special University you long to attend. Once again, he displayed such admirable qualities of a loving, protective older brother. He took Joshua under his wing and told him EVERYTHING he needed to know about Kindergarten ~ Joshua was lucky to get the same great teacher who taught Lil Kevin.

Another testament to the power of prayer ~ Joshua David Berger! When Joshua was less than a week old, we had to rush him to the ER. He was a tiny little thing, just around 7 pounds... he hadn't eaten much the whole day - I finally called our nurse who told us to rush him to the ER. We jumped in our SUV - I didn't even put him in the car seat... I held him in my arms the whole way. He was lifeless... my tears were falling all over his head as I prayed and begged him to drink his bottle... he was unresponsive. RIGHT when I walked in the door - a nurse walking by saw me carrying this limp little baby and immediately took him into a room - a couple of people came in to ask me a battery of questions and fill out paperwork - all the while, Joshua was getting poked and prodded. He stayed in the NICU for about 2 weeks - it was the start of 2 LONG years in and out of the hospital.

When we finally learned that Joshua's constant health issues we caused by LAD, we were asked if we noticed any of the tell-tale signs... They were shocked to learn, with Joshua's severe deficiency that he was able to survive a circumcision, his umbilical cord fell off within an expected time range, his body responded so well to the normal childhood immunizations and that he had even made it this long in life. He is a walking miracle! He survived a BMT -and now - my baby has survived his very first day of Kindergarten. He was a little scared when he noticed that his big brother wasn't going to spend the whole day with him -but- he came home a confident and happy student.

He was here yesterday and saw Raylee for the first time since she started to struggle with mucositis - He's VERY expressive... He was shocked to see the difference in her appearance, he asked as he held out his chubby lil hand, "momma, can I touch her?" So concerned about germs, I responded, "no baby just talk to her." And he quickly responded, "but momma, Jesus laid his hands on people and they felt better!" I felt horrible, "of course then - you can touch her." ...he laid his little hand on her and closed his eyes tight and said "Jesus touch her from the top of her head to the soles of her feet; you leave her body evil sores! In Jesus name... and everybody said!" We both said "Amen." From one miracle to another...

Free slideshow made with Smilebox

Day 11

2010-08-22T20:45:00.007-05:00

I am so happy to say that it looks like Raylee is beginning to engraft!! A small increase in her ANC (0.22) along with a consistent rise in monocytes, indicates that Lil Kevin's cells are beginning to grow. Her platelet count dropped; she needed a platelet transfusion today. Her hemoglobin is low; she'll probably need a blood transfusion tomorrow. This is all normal... it will take a while for before she can maintain normal levels of hemoglobin and platelets - she'll get transfusions in the outpatient clinic even after she's discharged.

I hope the rest of the time in room 44 is unbearably boring - just waiting on counts to go up. Of course, spending time in there with a HAPPY baby will make the time fly by. Raylee looks so much better. She's still battling with the mucositis - the pain medication seems to cover that well. She's playful, chatty and smiley - which puts a smile on everybody's face. Hopefully this mucositis will disappear soon and she can start eating again. It's so hard to hold her down to suction her mouth and nose -and then- clean out her throbbing mouth with the special mouthwash. Her heart rate rises anywhere between 190 to 210... then we have to give her an extra boost of Dilaudid. She still needs lots of prayer - but Thank you Lord for giving her strength to make it through the roughest part!!

Day 10

2010-08-21T22:30:00.001-05:00

Thank you so much for joining us in prayer!! Raylee had a rough start to her day - but she has drastically improved throughout the day. Her platelets were very low; she was bleeding quite a bit from her mouth and nose (due to the mucositis, which has spread all over her mouth) - after receiving a platelet transfusion, the bleeding stopped. Since she had been in so much pain, they decided to increase the infusion of Dilaudid to keep her more comfortable. She gave a little scare with a small rise in temperature - they took blood for cultures and started antibiotics that would cover common causes. She was unable to take Tylenol because she is still having problems swallowing with the mucositis. But amazingly, her temperature came right back down. Her ANC is down to 0.05 - Surely, tomorrow we will start to see an increase.

Our 10am prayer was not a typical "bow your head and close your eyes..." Raylee was crying loudly and I was steadily praying, apologizing for her pain here and there. But it just goes to show that God is always present when you call on Him. And not only did He hear a large outcry for Raylee but He reached down to ease her suffering. She has been so happy today - she's been interactive, talkative and SMILING! It was a good day... she got visits from her cousin Britney, her mawmaw & pawpaw and her daddy - She was SO HAPPY to have company. You can tell when Raylee is happy to see you - she reaches out with her tiny hand to grab your nose... Today, she happily rubbed some noses :)

I want to send my most sincere gratitude to Mr. Blueshorn, "the lyle," Mr. Scagnetti, Greg Pederson, Dan Joyce, Nate Heupel, Drew and all the guys from BC for your continued support and encouragement - I can't tell you how much it means to me!! This is well overdue - but I have yet to find a way to communicate through the comments.
To Raylee's "Aunties" - Taryn, Becki, Sheba and Jessica - yall need to come back when Raylee is in better spirits; she really loves yall!
Thank you Pastor Tammy Brantly for stopping in to lay praying hands on my precious baby!

Day 9

2010-08-20T17:00:00.001-05:00

Raylee is now getting Dilaudid continuously - it is a great help. She has conjunctivitis in both eyes. Mouth sores are now visible under her tongue and there's more blood in her saliva. Her ANC is down to 0.11 today... we want this number to start rising quickly!! The doctor gave an educated guess that it would start to go up by Day 13 - Let's have faith that it will be sooner than that.
Please join my family in a group prayer for Raylee tomorrow, August 21 at 10am CST. Though you will not physically be here with us ~ we can all join together in a spiritual petition to God... Pray for the complete restoration of her immune system and for comfort during this low point in her journey. Feel free to invite your praying friends... Thank you♥

Day 8 ~ Please pray

2010-08-19T22:00:00.001-05:00

Just a brief update ~ Please remember to pray for Raylee
Today her ANC is down to 0.33 - this is the lowest it has been. This morning, it looked like it was going to be a really good day - she was still in some pain but, managed to interact some and flash her 2 pearly whites. After a long nap, her demeanor changed and she seemed to be in lots of pain. The Dilaudid works well -however- it's more concentrated than Morphine; therefore, it cannot be given in a continual dose. I can push the button every 5 minutes if she appears to be in pain. I've had to push it quite a bit since she woke from her nap. The mucositis is getting worse - her saliva is now tinged with blood and there may be a sore forming on her tongue. The only ways to resolve the mucositis is to keep up with mouth care, pain medication, increasing counts and PRAYER. No, the doctors don't mention that last one but I can see the comfort it brings ~ I may sound like a broken record in requesting prayer - it's because I believe in the power of prayer. It's not easy for me to be strong while confined by these 4 walls with my baby in pain. I'm often careful not to cry in front of my children - I don't want them to be alarmed... I came very close to breaking down today then, my sister-in-law reminded me of Isaiah 49:16 where God says: See, I have inscribed you on the palms of My hands; Your walls are continually before Me. We are not alone in here - we are being held in the hands of the ever powerful, comforting, loving, healing hands of The Great Physician who created us and will never forsake us... I will cling to His promise that by His stripes, Raylee will be healed (Isaiah 53:5)

Day 7

2010-08-18T18:30:00.005-05:00

Constantly praying for comfort and healing... Raylee's counts are at rock bottom, which opens the door to lots of discomfort. Her ANC is fluctuating under 1.0 - it is at 0.87 today. In addition to her persistent nausea, she now has mucositis. Mucositis is a very painful, common reaction to chemotherapy... customarily appearing as "mouth sores" but can occur anywhere along the GI tract. Unfortunately, Raylee has mucositis in her throat - she's not swallowing her saliva (thick drooling,) very hoarse and very whiny. Of course, she's not sleeping well, can't get comfortable; and so, she squirms A LOT. I had to untangle her from her IV tubing 4 times overnight - once, it was wrapped around her neck. After trying to calm her with Benedryl, she was able to get some good rest with Morphine.

Since she seems to be in so much pain, they just put her on a continuous dose of Morphine with a PCA pump. She's also starting to develop red spots on her face. It is unclear where this is coming from... it could be that she's straining when she vomits, she rubs her face often, plus itching is a side effect to Morphine... doesn't help that she's also teething -and- losing her hair, which is also very itchy. In an attempt to rule out possible causes, they are switching Morphine to an equivalent pain medication - Dilaudid.

For most of the day, she has been sleeping with the pain medication. Although, her vital statistics indicate she is still in some pain even while sleeping. She is being monitored very closely... should the mucositis cause too much swelling in her vocal cords, it will affect her breathing. In this case, she will be transferred to PICU to be monitored by Respiratory Therapy. Please join me in prayer for Raylee - that this will pass quickly, and her counts will begin to rise fast, bringing better circumstances...

Day 4

2010-08-15T13:44:00.022-05:00

You might be thinking... this is all over with now, they had their big day, shouldn't they be on their way home?? I wish!! I hope I have shown a BMT is not a quick in and out procedure - It is a long, difficult, complex procedure. Raylee still has a long way to go. Since Day -2, she has been continuously receiving Tacrolimus - the immunosupressive drug that prevents her body from rejecting Kevin's cells. The Tacrolimus level is monitored (& tweaked, if necessary) daily by the CBC. The further out she gets from Day 0 and her pending progress determines how much Tacrolimus she gets - they are slowly weaned off of it. With the Tacrolimus leaving her immune system in this delicate state - she still has to remain in "social isolation" for approximately 6 months (provided there are no complications.)

Every morning, her blood is drawn & a CBC is done. In addition to the Tacrolimus level, they monitor and tweak so many things ...if hemoglobin falls below 8, she gets a blood transfusion, if platelets fall below 20, she'll get platelets, etc... They bring in a chart listing all her counts every morning - I remember waiting on pins and needless for Joshua's. The Absolute Neutrophil Count (ANC) determines the time of discharge. When the ANC is 500 for 3 consecutive days, they can go home. Right now, Raylee's ANC is still trending downward - yesterday it was 2.37, today it is 1.23. It will plateau then slowly start to rise, which will also prompt testing to differentiate donor vs. recipient cells. Joshua was discharged on Day 23.

Raylee is still feeling the effects of chemo... she's very nauseous. She is at the point where she has to be given a dose of Zofran to tolerate her bottle. Yesterday, even with the Zofran, she couldn't keep her bottle down. It's so sad, she is so happy and anxious to eat when she sees her bottle - but soon after, it comes up. Today, they decided to add in Zantac to account for possible acid reflux. She's also getting nutrition through her central line ~ which helps curb her appetite. As for Lil Kevin - he's 100%!! Friday night, he was in the backyard playing football - a good, solid "form" tackle, as his dad calls it, caused one of his bandages to come loose. Had I been home, they would NOT have been playing football... my stomach is in knots just thinking about the worry I'll have to endure with 3 growing boys, this was only a small taste...

♥Day 0♥

2010-08-11T23:00:00.002-05:00

After waiting and waiting and waiting... Lil Kevin goes to the Operating Room at nearly 1:00 pm ~ he was scheduled for 11:00 am ...and poor little guy wasn't able to eat the whole time. He's never had a high tolerance for pain... In fact, I remember when we were all getting our blood drawn to see if any of us matched Joshua. We asked him if he loved Joshua - he said yes - You might have to give him some of your blood, we explained - (he was 4 years old then) He responded, "Aidan loves him more." Well, Aidan did end up loving Joshua more... But 3 years later, I'm amazed at the strong desire Lil Kevin now had to go through a little pain to help heal his sister.

Kev, my sister Rhonda and I anxiously waited in Raylee's room for them to call us down to the recovery room. As soon as we got the call, we flew out of the room... Lil Kevin was still sleeping. The nurse told us we should let him wake on his own... after 30+ minutes of watching us fidget & stare at a sleeping child, she suggests we try to wake him. Daddy calls his name out, he pops up with huge bug eyes, disoriented, checking out his surroundings - we all urge him to lay back down; but, he reaches behind him and touches the bandages on his back -before we could protest not to touch that- he says, "Whoa! I DID IT?!" We all say, "yeah, you did it!" A HUGE smile takes over his face and he yells, "AWESOME!" I will NEVER forget his face!! The nurse was even moved to tears... another nurse chimes in, "Wow, I wish all our patients woke up like that." Kev & I couldn't help but to laugh, engulfed in pride - It was "AWESOME!"

Lil Kevin and Raylee have different blood types. Before they could give Raylee his cells, they had to take out the red blood cells. Lil Kevin is now missing about 220 cc of bone marrow ~ after all the processing, 45 cc arrived in a small plastic pouch. It was around 8:00 pm when Raylee got her new cells. A couple of days ago, she started taking a drug that will keep Lil Kevin's cells from attacking her cells. In their new environment, they will see everything as foreign - with the immune suppressing drug, they are given a chance to get accustomed to their new body and multiply, still leaving Raylee in an immune deficient state. So now, we wait...

Digital slideshow made with Smilebox

Day -1

2010-08-10T22:00:00.006-05:00

Deja vu... wake up, feed Raylee, load her up on premeds, watch her zone out, put on monitors, start running final dose of Campath -BUT WAIT- 7 minutes into the drug and the doctor sends somebody in to cancel it! Appears that her cells have all been wiped out. Her tiny body is ready for her big brother's cells... and NOW, she gets to enjoy a briefly interrupted "day of rest." Now, would it be Raylee if the rest of the day was uneventful?? One lumen of her central line got clotted! Thank goodness, they called in a special team who was easily able to clear it. This girl is constantly squirming around and trying to gnaw on all the tubes and wires... I suppose this is a good thing ~ a tiny 6 month old baby with a rare disease, rendered completely defenseless by a merciless round of chemotherapy -yet- she's constantly tangling wires, giving the staff a run for their money, all while greeting you with a smile. -SURELY- God is smiling down on you, Raylee!

Little Kevin came in for his check-up in the clinic. He wanted to come spend time with his baby sister -but- he had cold symptoms. It would be dangerous for all the patients if he came into the inpatient side. He had more blood drawn, a nasal wash and the doctor talked to him about the procedure in the morning. I had to take him straight home after the exam -and- tomorrow, he will have to go straight home after he wakes in recovery. He was confused as we were leaving, asked why he couldn't see Raylee. I told him because he was sick... he starts ranting defensively... "I'm not sick, I'm not sick! Why do you think I'm sick, who told you I was sick?" I told him the doctor said he was sick... he looked around, very distraught and tearing up asked, "Now I can't save Raylee?" I grabbed him and said, "Oh no baby... you still get to save her; you just can't go see her now because you might get her sick." With a deep sigh of relief, he smiled.

Day -2 ...3rd dose of Campath

2010-08-09T21:45:00.008-05:00

Raylee woke up just like yesterday -then- quickly knocked out from the premeds. She was more nauseous... which I think makes her squirm a lot. She's been moving around so much that her IV tubing becomes quite a mess! She managed to yank some of the TINY, DELICATE central line tubing out from the dressing. Imagine tubing wrapped around her legs, then she kicks (like she LOVES to do) and the line, that's anchored into her chest by stitches, rips out... is your heart on the floor? THIS is what I kept picturing! Apparently, the same scenario was in the nurse's head - she immediately called for another (more secure) dressing change. THIS interrupted Raylee's drug-induced beauty sleep... by the way, even the nurse mentioned how traumatic the dressing changes appear to be for Raylee.

Since she tolerated the lower concentration of Campath well, they decided to give her 2 mg today. (AND Yes! The Campath was running during the dressing change.) About 3 hours in, the doctors decided that she could handle 1 mg more ...as that was being loaded onto the pump, her face broke out in hives. She was given more Benedryl -but- her left cheek is still splotchy... apparently, "Campath rashes" linger for a couple of days. Regardless, she is still a beauty! Tomorrow, we will find out if she will require the remaining 3 mg of Campath.

Here's an answered prayer... the kidney/bladder issues were evaluated today by a Renal Ultrasound. Nothing abnormal was seen! While we're on the subject of prayers... here's another I know will be answered (and please join me in this petition to Our Mighty God) ~ Little Kevin will be coming in Wednesday morning for his heroic act ~ Pray for him. I know my son... he knows what he's about to do will save his baby sister's life; it is very evident that he loves her with his whole heart -BUT- I can see past the bravery he solely wants to be seen... there's a trace of fear he carefully conceals. To keep him comfortable with his decision, we positively talk about it. As the time gets closer, his daddy has been preparing him more frequently. Tonight, his young 7 year old mind inquired, "Daddy, will the anesthesia work on me? Because I'm a light sleeper."

Slideshow customized with Smilebox

Restarting Campath

2010-08-08T22:30:00.003-05:00

Raylee woke up HUNGRY... She was able to keep down a total of 8.5 ounces of formula (yesterday she had a total of 10.5 ounces and threw up 2 of the 3 servings.) After her bottle this morning, she was premedicated with Tylenol, Hydrocortisone, Benedryl and Demerol for her dose of Campath... she looked dazed and quickly passed out -then- Campath was loaded onto to IV pump and 1 mg was slowly administered over 4 hours. The entire 4 hours, the nurse is right by her side or monitoring through the window at the nurse's station. On Thursday, with 3 mg of Campath, Raylee had a bad reaction... it seemed like she had every possible side effect. Campath is a drug that targets and destroys lymphocytes. The most recent CBC reported her lymphocytes are at 0. Since her lymphocytes have been blasted away, I'm hoping that the Campath will be cut short and she can keep her "day of rest" before she gets the donor cells this coming Wednesday (Day 0.)

There are a few red blood cells showing up in her urine. This is being evaluated today. Her liver is also being monitored ~ in an earlier exam, it appeared slightly enlarged. Her abdomen is measured twice a day. Praying that nothing comes of these 2 issues. She's such a tiny little girl; her brand new body is being put through so much.

**My wonderful mother-in-law flew in from Albuquerque to help out and visit. Sadly, she left us today... with all the commotion, I never had the chance to take a single picture... so upsetting! :( The boys fell in love with her all over again... If you met her, you'd LOVE her too. Ruth... I mean! Grandma, thank you so much! We all LOVE you and can't wait til you come back... PLEASE make it SOON! xoxoxox

This free slideshow design made with Smilebox

Day 4 of Chemotherapy

2010-08-07T22:45:00.003-05:00

Look who's smiling again. She's still nauseous and not eating well -but- when she's comfortable, she's her old, happy self. There's always so much traffic in and out of her room ~ but the rooms are pressurized so any germs outside are pushed out when the doors open/close. The IV pump is so busy and constantly beeping; so, the nurse is always running around like a chicken with its head cut off. They're still having to wear the mask, gown and gloves... Raylee is so confused... with the mask over their faces, they still talk a lot to her - she stares wide eyed, without blinking as if she's trying to figure out how they're making noise.

She completed the Busulfan and Fludarabine. Dr. Krance waltzed right in and nixed today's dose of Campath... I was a little relieved. Saturdays are when her dressing for the central line is changed - I was afraid of her having to deal with both things at the same time. Instead, she only had to suffer through the dressing change... which seemed to go pretty quickly this time. Tomorrow she will get her next dose of Campath - after which, she will need to take 2 more doses. They also decided to lower the concentration... praying that she tolerates it well.

She is premedicated with Benedryl when she gets blood products. Last night, she needed a blood transfusion and platelets. The Benedryl has been causing her to sleep quite a bit. Early this evening she started IVIG, also a blood product. IgG is an immunoglobulin/antibody that your body makes to prevent bacterial infections. She has sure perked up with all these blood products ~ the power of blood is amazing.

Day 3 of Chemotherapy

2010-08-06T22:00:00.002-05:00

"It's just the dark before the morning... 'Cause the pain that you've been feeling; It can't compare to the joy that's coming."
Raylee had a better day than yesterday... still, lots of nausea, vomiting, pain/crying, and fluctuating temperature & heart rate. She had a CT Scan of her head because they thought she may have been bleeding... Praise God, she was not! It's most likely all a reaction to the Campath. She was given a break from Campath today - had more Busulfan and Fludarabine - which will be completed tomorrow. Her protocol will change based on her reaction to the drug. She will still receive donor cells on Wednesday -but- she could complete Campath that day OR the day after. She's also retaining fluid and may have issues with her liver/kidneys - she is getting Lasix for this. She is finally resting well... with help from Morphine and Zofran - which she's now taking on schedule. I'm hoping and praying that she gets a full night's rest.

Last night, Raylee did not sleep at all; she was in discomfort all night. I have to thank God for the strong husband He gave me. Kevin has been so good with Raylee. It's not easy for a father to see his baby in pain ~ It's not easy for a mother to leave this to the father. I could see the anguish in his eyes. It is well known that mothers are cut from a different cloth ~ when it comes to our children, we acquire a strength that surpasses that of any man. But Kevin comforted and cared for Raylee with the strength of a mother. I have to admit though, I am so happy to give him a break. I'm enjoying holding her and smothering her with kisses...

Day 2 of Chemotherapy

2010-08-05T19:00:00.001-05:00

Raylee is having a rough day and it's not over yet... She is on the same protocol that Joshua followed. In short, they go through 4 days of chemotherapy to obliterate their own bone marrow, followed by 2 days of rest. The following day, they receive the donor cells. The remaining time in the hospital is monitoring engraftment of the donor cells. Once it reaches a certain level, they are discharged with frequent outpatient visits that slow down with progress. Yesterday, she received Busulfan (which is the milder of the 3 drugs) and Fludarabine. Today, the Campath was added in... with this drug she is premedicated as a precautionary measure to possible side effects. She took Tylenol, Hydrocortisone, Benedryl, Zofran and Demerol. Her vitals were very closely monitored... her heart rate shot up about an hour into the Campath. Immediately, the room filled - she had a chest xray and an EKG - both indicating it was a reaction to the Campath. Her temperature went above 104°... the Campath rate of infusion was slowed down. After more Demerol, Tylenol and Zofran, her fever and heart rate came down but continue to fluctuate.

The first dose of Campath tends to be the worst... hopefully, her next 3 doses will go more smoothly. None of these complications were out of the ordinary... but tough to find comfort in that when staring into wide eyes filled with questions... seeming to ask, "why is this happening to me?" I imagine as I now cradle her and lovingly kiss her head, hoping that she understands my whispers ~ this will all be over soon, she will no longer be in pain and I am here for her.... Our Heavenly Father is doing the very same thing.

Such an appropriate scripture sent from a praying friend...
"For we are powerless before this great multitude who are coming against us; nor do we know what to do, but our eyes are on Thee." 2 Chronicles 20:12

Let the Process Begin...

2010-08-04T19:00:00.003-05:00

Raylee is on her way to fully functioning white blood cells... she's finally started and I feel safe saying it. Last night, she started her conditioning ~ she received a different anti-seizure med that did not clot her line! This morning, she began two of three chemotherapies that will continue over the next four days. She is behaving very un-Raylee-like - already feeling the effects of chemo... Joshua did not react to it as quickly. They keep telling me that while I may know what to expect from Joshua's experience, I should not compare the 2 of them because everybody is different. I can't help but to draw expectations from experience... who doesn't do that??

She is obviously uncomfortable from the chemo ~ at times, she is inconsolably fussy... like most babies can be at this age. It's so easy for parents to get frustrated with their babies going through these phases. I find myself comforted in actually knowing why she is fussy -but- quickly troubled by the same reason. Along with the fussiness, she has a small loss of appetite, some fatigue and has developed nasal congestion. She had a nasal wash... results should be back in 48 hours.

Her chest xrays and CT scans never revealed a completely clear picture. There is still a remnant of pneumonia and/or a collapsed lung. The doctors weighed the risks for continued treatment of the pneumonia and moving forward with the BMT ~ the risks were less in moving forward. I kept thinking... maybe she doesn't really have LAD and this is all a huge mistake!! However her bloodwork paints a different picture... her white blood cells (which are monitored on a daily basis) definitely do not behave normally.

Thank you for keeping Raylee in your thoughts and prayers.

Thriving Nonetheless...

2010-07-31T22:00:00.005-05:00

Raylee is rounding off her 3rd week in the hospital and she turned 6 months. They're hoping that she still reaches the relevant developmental milestones. She's doing great!! She's babbling, even said "dada" once - though I'm sure it was ME she wanted. She rolls around so much that her IV tubing is always twisted and tangled. She's very alert and interactive, recognizes different people ~ her eyes light up when her big brothers visit!

In this unit, the kiddos have vitals taken 4 times a day and get weighed twice a day -and- all their input/output is closely monitored. Raylee doesn't eat nearly as much as her growing brothers did -but- she finally grew out of the 4 oz bottles!! She's now taking 6 oz at each feeding ...AND... she got her first serving of rice cereal. Good thing she has 2 new little teeth now :D I was talking to the nurse about the monstrous appetites the boys had compared to Raylee's. She is noticeably more finicky ;) Regardless, she's still growing. Here's a glimpse of the growth chart at 6 months for my boys & Raylee:
Kevin 19 lbs. 8 oz. ~ 27 in. long
Joshua 17 lbs. 12 oz. ~ 25.5 in. long
Aidan 16 lbs. even ~ 25.5 in. long
Raylee 13 lbs. 3 oz. ~ 25 in. long

Saturdays are the dreaded days for the central line dressing change. The smallest dressing they have for a central line took up most of Raylee's chest/abdomen... it hurts her so much when the old dressing is pulled off. It is very rare for Raylee to cry ~ while the nurse was pulling off the tape, I had never seen Raylee make so many tears... she was even sweating. This time, a dressing meant for a PICC line was used... it's a lot smaller. It looks like THIS one will be a bit easier on Raylee when it is pulled off next week... it does not cover such a large area.

According to Friday's chest xray, the pneumonia is still present. It looks like it is clearing up, which is also evident in her bloodwork. She is on 3 antibiotics ~ as soon as the pneumonia disappears, we can move forward with the BMT.

This free digital slideshow customized with Smilebox

Another Delay

2010-07-25T22:30:00.000-05:00

Well, it was an uneventful Saturday -AND- nothing grew on her cultures, they are all negative. Sunday was a bit more eventful... her chest xray showed a small dense area that could be a sign of infection. A CT scan was ordered to get a better look. I have to brag a little... Raylee is such a good baby - they thought she'd need to be sedated for the scan, you have to be very still... But ANGEL Raylee was as calm & still as could be through the whole thing. No sedation was needed - thank goodness! She has just been amazing this entire time - she is very optimistic... even though she is only 6 months old, it is still very evident.

The CT Scan confirms that there is an infection in her right lung. She has not had a fever since Friday after surgery, she's eating well, and she's playful ~ if you saw her, you would not believe she was sick. But it is too risky to begin chemo with the possibility of pneumonia. She will be treated with antibiotics and antifungal IV meds ~ when it clears, she will begin the BMT process. I am tempted to throw myself a pity party; but, I notice that Raylee's spirit is not broken ~ She giggles as though nothing is wrong and she greets everybody with her beautiful smile...

The New Central Line

2010-07-23T22:30:00.012-05:00

In an attempt to preserve the original entry site, the surgeon would try to replace only the catheter of the central line. During surgery, the line slipped out of the surgeon's grip... he came out and took Kevin into a conference room, (I can only imagine the terror - it will take me a while to forgive myself for being at work.) he told Kev that he had to call in a special team to "fish" the line out through her femoral vein - since she was too small, trying to "fish" it out from the original entry site would be too close to her heart.

After another half hour - and a quick sprint from MD Anderson to TCH (for me!) - the surgeon came back out and said the remaining procedure went smoothly. We went to see her in recovery - I could hear her crying when we walked in the large room. It was a complete 180 from the way she woke from the anesthesia last time... her face was swollen, she was very fussy, she sounded hoarse, and she would not stop crying. She had an awesome nurse that looked exactly like the nurse from "Scrubs" - so, Kev kept singing the "Scrubs" theme song!! ...coincidentally, this made Raylee happy.

We were back in the room and it was obvious she was in pain so she was given morphine... and they finally removed the peripheral IV, which seemed to be causing some discomfort as well. It left a little imprint on her arm, it was on so snug... the mark is still visible hours later. THEN, she spiked a fever of 102°. The BMT crew quickly filled the room to take vital signs, draw blood for cultures, and start IV antibiotics. Shortly after this, a gentleman came in to do a chest xray - deja vu of the 1st post surgery evening.

The Tylenol has worked its magic and the fever is down; she still sounds hoarse/croupy which is probably due to prolonged intubation from the complication during surgery... her lungs are clear and her blood-oxygen is at 100%. NOTHING is going to grow on those cultures and she WILL start this procedure on Sunday, as planned! It's going to be an uneventful Saturday for my ladybug.
Thank you for your continued support and prayers...

HAPPY BIRTHDAY JOSHUA!!!!!

2010-07-22T16:07:00.016-05:00

My brown-eyed baby turns 5 years old today ~ I remember the morning we had Joshua ~ it was a planned delivery; so, I was very anxious to meet my little man... whom I thought would be the last little representation of the Kevin/Rhenee union. After a lovely epidural and a little lounging, Joshua David Berger was in my arms, a perfectly beautiful 6 lbs 13 oz. The smooth delivery was no indication of the bumpy road we would travel to get to THIS day... it's really such a distant memory that we would not even retrace those steps if we weren't right back on the floor where Joshua was given a new life. He's our very own case study to reference and give us hope for Raylee. So, thank you my Joshie for clearing this path as we all walk through it this one last time.

-AND- I have some good news... Raylee could not fit in the surgery schedule today ...but... she IS on the schedule for tomorrow morning -GREAT NEWS- Now we have a definite time, which means - no hungry baby, as this allows her to stick to her normal feeding schedule. They're also starting the conditioning a couple of days earlier. -PLUS- She was able to celebrate Joshua's birthday. Our great BMT friends came in to help sing an awesome chorus of Happy Birthday :) I think it was more of a gift for Raylee that her big brothers were here... her face lit up when she saw them - she must have gotten a million kisses :)

Starting over...

2010-07-21T22:20:00.008-05:00

I have some news that's not so good.... I learned of it in the middle of the night - after I had left the hospital and came home to my handsome young men. I woke up this morning uneasy and scared... got the boys up and was driving them to my mom's house so I could go to work. I told the boys that Raylee was having a rough time and we should pray for her. It was 5 am -so we were alone on the road- I told them to let me get to the stop sign and we could all pray. I came to the stop sign ready to pray and before I could even open my mouth, Lil Kev immediately lead us all in prayer for Raylee and even prayed for exactly what she needed though I had not told him any specifics.... I was speechless and had tears building up in my eyes as I heard 3 little "Amens."

The drug used as a preventative measure for the chemotherapy clogged Raylee's line, rendering it useless. She had another peripheral (temporary) IV placed to try and proceed with the set protocol - it also stopped working. Per daddy's request, her 2nd IV was placed by our favorite A&I nurse, Kay. This one is working perfectly and will be used in the morning for another surgery. Another surgery is necessary to repair/replace the line -and consequently- the BMT will be postponed another week.

I have to admit that I am frustrated... I don't like to see my baby in pain and feel helpless in making it go away. I know that all she needs to endure is this complex procedure that we can't seem to begin. The only thing I can take comfort in is knowing that God is in control and His protocol is going just as planned.

UPDATE

2010-07-17T21:00:00.002-05:00

As you can imagine, giving birth to 4 kids and going through a 2nd bone marrow transplant will leave you with little family medical leave from work. I've been forced to share hospital time with daddy. Luckily, I work in the medical center so I've been running over here on my lunch breaks and after work. I was so happy to spend the weekend with Raylee!! I was pretending we left the boys at home and enjoyed a girls only weekend :)

Raylee is doing very well (she's definitely feeling the effects of prayer!)... her spirits are up, eating well, no fevers, happy as can be!! They took her off fluids for the weekend so, she's had some free time from her IV pole :) She's still on a couple of IV antibiotics and antifungal ~ playing it safe for the upcoming chemotherapy.

She seemed to be in some pain from the surgery for the central line - she'd get real stiff when you picked her up and would whine if you touched near the area. It brought back memories of Joshua's tough beginning with the line. She was given a small dose of morphine and has seemed to be comfortable since then. Since the line is a possible source of infection, it is diligently cleaned. The 1st dressing is changed 48 hours post surgery (& every week after that.) I missed the 1st change for Raylee, so daddy got to experience holding down a screaming baby while the tape is taken off. Eventually, the site on the body heals and the redness disappears - but they never get used to the weekly dressing changes! Joshua would cry when he saw them come in the room. I can imagine that pulling a strong adhesive tape off your skin is not a pleasant experience.

I have to correct myself... while His Grace did generously supply Raylee with LOTS of goodies - a new program called "Dec My Room" gave her some of the toys that were pictured (plus a new Bumbo, tray, swing/seat, etc...) I don't recall this service when Joshua was here. Friday, they came in and put up decorations on the walls and brought MORE gifts ~ we are so grateful!

It was a great weekend... Raylee got special visits from her Mawmaw & Pawpaw ~ and Aunt Rhonda & Uncle Champ. (Aunt Rhonda added even more decor to the room - we LOVE it.) It's been a long time since we've seen the staff on the inpatient side - it's been nice to see the familiar faces and meet some new people. Of course, for Raylee, it's all new people greeting her - and she loves the attention...

Free digital slideshow customized with Smilebox

Change of Plans

2010-07-14T22:30:00.004-05:00

Last night, Raylee developed a fever of 102.2°... it was assumed the cause was last night's surgery, she was given an IV antibiotic and a chest xray. The xray showed a small spot of pneumonia. More blood was drawn for culturing. She is being treated with a broad spectrum antibiotic... should the cultures grow any bacteria - it will be tested against this antibiotic and she'll be treated accordingly.

For her safety, the BMT protocol will be postponed at least a week. She will remain in the BMTU until she recovers then go straight into the original protocol. Her hospital stay will be longer now...but again, THANK GOD this was caught before she started chemo. Hopefully, she will start conditioning next Tuesday and her course of chemo next Wednesday.

Her happy disposition is interrupted by brief moments of fussiness. Sometimes, it seems she is in pain - the site of the central line appears to be very tender -plus- she is definitely teething. One tiny little tooth has already broken the surface of her gums and the one next to it is quickly breaking through as well. She's getting some relief with pain meds and Tylenol. She has such a strong spirit - although she seems to be miserable, she still manages to muster up enough energy to smile and laugh... I'm amazed by the range of emotions you can see in her bright, wide eyes.

This afternoon she was visited by His Grace Foundation - this is an unbelievably FANTASTIC organization that offers support throughout your stay in the BMTU. They brought Raylee all kinds of toys, blankets, clothes and goodies. For the parents, they give toiletries, snacks, teas, drinks, candy, detergent, free parking, notebooks, pens, colors, etc... We are so thankful for their generosity. May God return these blessings to them and continue giving them the means to comfort the families of TCH BMT.

Slideshow design personalized with Smilebox

Raylee Gets Admitted

2010-07-13T21:30:00.004-05:00

We started this LONG day bright and early. Raylee needed to get a PICC line placed for the BMT - she had to be at TCH by 6:30 am. Since she would be sedated, she could not have food/formula 6 hours prior to the procedure - by 7:30 am she was showing signs of hunger. The anesthesiologist was placing her peripheral IV just before 9:30 am... after viewing the site for her PICC line by ultrasound, it was determined that her veins were too small for the PICC line. We were sent to BMT Unit to devise a plan B...

Plan B was to get a Central line placed, which is a surgery. (This is exactly what Joshua had.) HOWEVER, the surgery schedule was full so she was put on a "wait list" for the day -and- she was not allowed to eat since the time for the surgery was undetermined. She was given IV fluids to attempt to hold her over... which was not a great substitute. I felt helpless and guilty... she was obviously hungry and hadn't eaten since her 10:30 bottle last night.

They FINALLY came to get her just after 4 pm for the surgery... by this time, she was drained. Regardless, her surgery went well and her line is working perfectly. She is now able to start conditioning treatment before starting 5 days of chemotherapy in the morning. This course of chemo serves to wipe out her own bone marrow. Today is called "day -7" with "day 0" being Lil Kevin's big day and "day 1" is when Kevin's bone marrow starts filling up the empty spaces.

Before going to the OR, she needed more labs drawn - of course the peripheral IV in place was not returning blood! So she was poked TWO times extra to get the blood needed for that. Once her line was placed, the rest of the labs were taken out from that line - THIS is one of the perks of having a central line - no more crying thru blood draws. What a relief!

We were walked through the BMT clinic and into the BMT inpatient area - as I walked through the doors, memories of Joshua walking the hall with his IV pole following behind him came rushing to the front of my mind. We curved around and -lo & behold- RIGHT into Joshua's old room! Good ol' room 44 - the only difference was that a crib stood where a hospital bed once was. I could imagine little Joshua jumping on the couch with his toys cluttering the room and Spiderman 3 playing over and over on the DVD player. Now it's Raylee's turn to give these 4 walls some stories to tell...

Make a free picture slideshow

Progress Made ~ Prayers Needed

2010-07-07T19:20:00.006-05:00

Lil Kevin and Raylee both went in today for a follow-up. Results for Kevin's nasal wash revealed an influenza virus. Thank God that was caught! Although it seems the virus has taken it's toll and Kevin is far down the road to recovery, Raylee has developed new symptoms. She had a battery of tests done today.

For blood tests, her little finger was pricked and "milked" to fill 3 little tubes. She had tears streaming down her face during this - popped a bottle in her mouth for temporary satisfaction. Right after that a gentleman came in to do a nasal wash on her :/ Apparently, nasal washes on infants are carried out a little differently - the saline is flushed directly into her nose from the syringe & immediately suctioned out with a nasal aspirator - this caused her to throw up her milk ...poor baby. After physical exams on both kiddos we were sent home with a kit for urinalysis and diaper samples.

We'll be in close contact with the BMT NP and Doctor. -IF- Raylee's health starts to improve, she will be admitted on Tuesday, July 13th. Worse case scenario: her tests reveal a bacterial infection, she'll be admitted to treat the infection and after that's clear, start the BMT. Of course, THAT will prolong her stay in the hospital - the BMT alone is about 30 days in isolation to the BMT floor. We continue to think healthy, optimistic thoughts and keep trusting in the Lord with all our heart...

Happy Birthday to my beautiful sister-in-law - she got the best birthday gift ever... Her 3rd son was born early this morning. Congratulations Christy, Carlos, Leo & Luca - we are so happy for you and love you all so much!!

Does ANYTHING ever go as planned?

2010-07-02T20:00:00.000-05:00

Here's the latest... Lil Kevin is ill and the BMT crew examined him. He endured a nasal wash to check for infection. I've never had one - but I've had to hold Joshua down plenty of times while he got them. It appears to be a bit uncomfortable... and Joshua always managed to squirm with super human strength, which probably made it worse for him. Meanwhile, I feel like I'm aiding in the torture of my own child! For most of Joshua's life, I've felt like that... the guilt heightened when he learned how to talk and started begging, "help me mommy, please!" - and I'd come to him only to help hold him down.

For the nasal wash, a long, thin tube attached to a syringe with sterile saline, is inserted into the nasal cavity. The saline is squirted in and then suctioned back out. Hopefully, cells in the nose are recovered to test. Results for Kevin's will be in shortly. I have mixed feelings that I wasn't there for him... Ironic how you hate to watch the procedures, yet you long to be present.

Unfortunately, Kevin will not be able to donate at the scheduled time. If he has either an active or dormant virus, it can be very dangerous for Raylee. Her admission will be delayed (maybe as little as a week) depending on Kevin's health. They warned us of something like this with Joshua - but everything went according to plan for him. Of course, I wouldn't have imagined it would happen with Raylee... But I am happy that it was caught before she went through a week of chemotherapy, leaving her little body defenseless. Now we are back to waiting with uncertainty...

The Virus Spreads...

2010-06-30T22:00:00.001-05:00

First... I want to say how touched I am by the people who took the time to send encouragement and well wishes. I can't even begin to put into words how comforting it is to have family, friends, acquaintances and people I've never met who are willing to offer support and prayer. Thank you!

The viral infection Aidan had (that Raylee caught) has now spread to Joshua and Lil Kevin. So frustrating... here we are in the middle of summer and boys who rarely get sick are getting sick when they need to be healthy. We're keeping the boys away from Raylee -BUT- it's still very important that Lil Kevin be healthy by July 13th (the day he goes in for his bone marrow aspiration.) Since he will be intubated, he can not have an upper respiratory infection. Again, we will remain optimistic that this clears up by July 13th.

On the bright side, Raylee is feeling MUCH better. The blood culture results came back negative. Daddy took her to TCH today for more blood tests. Everything is on track for her to check-in on July 6th. It will definitely be a quiet 4th of July weekend for the Bergers... We will be taking "social isolation" very seriously from here on...

Tiny Bump in the Road

2010-06-23T21:35:00.004-05:00

After Monday's trip to TCH, Aidan came home with a 101.7° fever. We treated him with Motrin & kept him away from Raylee. Today, I was notified that Raylee had a temperature of 101.8°. Fevers in immune deficient patients must be taken very seriously... I was suddenly overwhelmed - afraid that the whole schedule for the BMT would be thrown off. By the time I got to her, the fever had risen to 102.4°. We headed to our pediatrician's office, Dr. Lacour. If he was unable to pinpoint the source, we were to head to the ER at TCH.

It appears to be a viral infection with high fever - which is good news. Raylee was able to produce a urine sample that came back negative for infection. She was poked (again this week!) for a blood culture - to rule out bacterial infection. Both she and Aidan got finger pricks for CBCs. Aidan's WBC count was within normal range at 7,100 ~ Raylee's was at 73,100! Of course, an elevated WBC count indicates the body's response to fighting an infection. In Raylee's case - her body gets the signal, produces WBCs, infection remains (because the WBCs are unable to get where they need to be) and more and more WBCs are made. This happened to Joshua several times before diagnosis - then he'd get sent to the hospital for sky high WBC counts.

Since Raylee is so close to her admission day, she was given a Rocephin antibiotic injection as a precautionary measure. This will help to avoid a bacterial infection and a subsequent trip to the hospital for IV antiobitics. Although, if the blood culture comes back positive, she will have to be admitted for IV treatment. IF that happens, the BMT could be set back... we'll just remain optimistic that nothing will grow in that culture.

-AND- Don't worry...my little man Aidan has not gone unnoticed in all this. I'm giving him as much attention as I can. It's very rare for him or Lil Kevin to get sick.... he already seems to be in tip top shape - he had a 102° temperature this afternoon ... but a couple of hours ago he was running around in his Spiderman suit keeping up with his brothers....

Create a free digital slideshow

More Blood work...

2010-06-21T17:33:00.009-05:00

Yesterday, we celebrated the best daddy in the world ~ Today, he takes us to get poked! Just kidding Kev...

Raylee's "ringworm" put us in isolation today. This is a great practice by the BMTU - if you/your kids are sick(contagious,) to protect the other patients - you are isolated from shared areas. -AND- all health care personnel must wear extra personal protective equipment. On the down side, we had to pack our whole family in a tiny room - not in the spacious, toy filled waiting room I thought we'd be in.

Getting blood from Lil Kevin... Didn't use the numbing cream -but- was able to get a "freeze spray." On the first try, he was so tense, you could see his bones and every vein in his arm. Poor lil guy was trying so hard not to cry - I don't care what anybody says, THIS HURTS! You always hear how tough it is for "men" to deal with any type of medical situations -so- this only proves how much of a "man" my 7 year old son is. The "freeze spray" on the other arm, on the 2nd try provided enough blood for the tests needed... they will see if there are any viruses lurking around that Raylee may need treatment for once she receives his bone marrow. His dad whispered in his ear, as he pointed to Raylee (who was looking at her big brother with wide eyes on a curious face), "Remember, you are doing this for her" ...That was all it took - not a single tear dropped.

We were able to take Raylee to Miss Kay in the A&I clinic again - thank goodness!! (She was on vacation last week.) It was so sweet... While Raylee was getting poked, Lil Kevin stood behind her, ran his fingers through her hair and kissed her little head as she was crying. I looked back and Joshua & Aidan silently stared - same place Lil Kevin was in when he first saw his baby sister getting poked. We were in and out within 20 minutes!

I must add... We brought Joshua & Aidan along because we were paid a visit from Joshua & Raylee's Allergy & Immunology Doctor - Dr. Abramson. Every time we bumped into anyone dressed in scrubs, you'd hear Aidan's chirpy lil voice, "Hi doctor!" He later introduced himself to a little boy as "Mr. Dr. Aidan." After they did anything to Kevin or Raylee, he'd facetiously say, "Do Joshua now." To which Joshua would scream in protest ....I'm pretty sure we were the most pleasant and quiet guests in the hospital.

Free slideshow created with Smilebox

We Have a Date

2010-06-15T20:00:00.006-05:00

We finally have an admission date - On July 6th, Raylee will begin her Bone Marrow Transplant. This is right around the corner...she and Lil Kevin need to stay in good health.

She has begun weekly visits to the BMT Clinic to assure she stays in good health. Daddy took her to yesterday's visit - more blood was collected. Kev said it was a horrible experience - I've said it before & sorry to say it again but, it's usually not an easy task to draw blood from such tiny veins...not that I've tried - but it sure is heart-wrenching to witness!

Unfortunately, she has developed an ugly fungal infection :( It was misdiagnosed early on and treated incorrectly. You'd think after having 3 kids, I would have recognized this on my own. What started out as a tiny spot on her left cheek, has grown to cover almost her entire cheek. She was put on an oral anti fungal medication -plus- a topical anti fungal cream. The oral medicine made her very nauseous and fussy - way out of character for Raylee. When the BMT folks learned that she was throwing up every bottle, they told us to stop giving her the oral medicine - THANK GOODNESS! Regardless, it is healing rather quickly with the topical cream alone.

Was this fungal infection a symptom of her LAD? I'd say yes...recurrent skin infections tend to be frequent and often severe in younger LAD patients. It reminds me of a couple of instances with Joshua - before he was diagnosed. The first was an insect bite on his back that resembled a bite from a brown recluse. It appeared that the venom was burning a hole through his body...we had to take him to a plastic surgeon because his pediatrician thought he'd need a skin graft. Looking back - the pediatrician assumes this could have been a bite from a fire ant that his WBCs were unable to reach and heal. The second skin infection was an abscess that required inpatient treatment - it was a long week of IV antibiotics, thorough cleaning and hydrotherapy. It was during that week (in April 2007) that we received the results officially diagnosing Joshua with LAD.

Lil Kevin's First Visit to BMT Unit

2010-06-09T18:38:00.004-05:00

We're getting closer and closer to Raylee's admission to the Bone Marrow Transplant Unit...soon enough, we'll be on the other side of the double doors. First, they need to retype both donor and recipient - along with other blood work. So begins Lil Kevin's short but very important journey through his role in the procedure. He did great - you could tell that he wanted to drop a couple of tears when he got poked - but he fought them back real well. He was not as tough when he watched it happen to Raylee... We were sent up to the A&I Clinic for Raylee's 3rd attempt at giving blood. The nurse was A-W-E-S-O-M-E!! She very quickly & nonchalantly stuck her lil arm and filled 3 tubes of blood - my heart went from racing to calm in 2 seconds!

I'm always impressed with the staff at TCH - they go out of their way to make the children feel safe and special. A Child Life Rep, Lauren, came in to talk to Lil Kevin about what he was going to experience. With Aidan, we didn't need this service... he was all of 13 months old when he donated to Joshua. The basics she taught him about bone marrow/blood, in my opinion, everybody should learn. She told him how he was a hero and then she let him ask questions... He asked, "Where would she get bone marrow if I couldn't give it to her?" -and- "Would she die if I didn't give her mine?" Lauren was great with him - answered ALL his questions and offered a tour of the O.R. on the day Raylee gets admitted.

As I sit in the waiting rooms, seeing other patients at different stages in their own journeys....from the 3 yr old that JUST found out his diagnosis, to the 8 year old (playing video games with lil Kevin)who just hit day 100, and the handsome young man that was just discharged, singing praises to God, strumming a guitar as he got a transfusion - memories come rushing back to me. I hope and pray that Raylee's journey goes as smoothly as Joshua's. In a few days, we'll know when she'll be admitted...I am comforted in knowing that she has a wealth of people remembering her in prayer.

Another free photo slideshow by Smilebox

Pretesting begins...

2010-06-07T16:56:00.002-05:00

On June 3rd, Raylee completed the first 2 tests: chest X-ray and GFR. The chest X-ray was a piece of cake - 2 pictures taken, front and side - done. With Joshua, we'd always have to take another picture - that boy was squirmy :)

The GFR is a test to check kidney function... she was first injected with the medicine her body was to process and then she'd have 3 blood draws throughout the day - 1st an hour after the injection, 2nd an hour after that & the 3rd draw was 2 hours later. Luckily, the IV placed on her foot worked the whole day - plus, the nurse got it in on the first try! The only stress was getting that tiny vein to give 3 cc's of blood each time - by the time we got to the BMT office visit, it had bled dry. They will try to get blood on the next visit...

Today (June 7 - Happy Birthday Becki!!) Raylee had 2 more tests - ECHO & EKG. She was sedated for both - after she took the medicine, she was out in less than 5 minutes. (remember Raylee HATES liquid medication - I was just so happy she didn't have to get poked! -BUT- She made sure to protest!) The ECHO is a very detailed look at the heart by ultrasound... so detailed it took 40 minutes. I specifically remember falling asleep during Joshua's 1st ECHO - the room is dark and warm, I don't know how I stayed awake for Raylee's. While she was still out, they came in to do the EKG. This tests for possible problems with the electrical activity of the heart - it took maybe 5 minutes.

She woke up like a champ!! Mildly fussy for a few seconds then she looked like a happy drunk. If your child has ever been sedated, you know they wake up groggy then they're either angry or happy... Joshua was moderately angry - Raylee was happy - Aidan was... "you don't wanna see me when I'm angry." I'm almost afraid to see how Lil Kevin reacts.

After that, we went down to the BMT Unit... they attempted to get blood for more tests - 2 pokes, no blood... we'll have to try again another day :/

Create your own slideshow design

Welcome to Earth Raylee Ann

2010-06-06T11:14:00.018-05:00

First...I must say how wonderful it has been to have a little girl in the house. Like every mother, the FIRST thing I wanted to do was show my little angel to the entire world. However, we were told to keep her home and limit visitors... and nobody is allowed to touch her until their hands are washed. (can you imagine chasing 3 boys around and making sure their hands are washed constantly!) After birth, she wasn't even allowed out of my room - everything was done right in front of me - from her first bath to her first shots. Thank goodness for the internet - I think I have bombarded family, close friends and the world of facebook with her pictures.

At 6 weeks old she was able to start a prophylactic antibiotic that would allow some leniency - we were able to send her to the awesome sitter who cared for the boys. Miss Maria is familiar with LAD since she supported our family during Joshua's experience. Now, giving Raylee a daily dose of antibiotic has been no picnic! She'd scream her head off EVERY TIME...it doesn't even taste bad. From direct syringe dosing, I switched to a pacifier dosing aid...didn't take her long to figure out that trick - THEN she associated that type of nipple with the medicine - to this day, she won't put that shape of nipple in her mouth. The doctor gave me a "medi-bottle" to try - unfortunately, it had the same nipple shape! I've since started to put it in her bedtime bottle - I can only add 3 oz. of formula to it to be sure she drinks all of it...I give her more formula afterward. My mother gets a HUGE kick out of all this! Those of you who know me well are familiar with my picky eating - I was always the last child at the dinner table, crying into my food because I didn't want to eat it or conning my little brother into eating my portion (THANKS Dustin!) Needless to say, I still refuse to take liquid medications - it has to be in pill form :)

Raylee has only had one preBMT hospital stay due to infection. She was admitted through the TCH ER at 7 weeks old. The battery of tests they put newborns through in the ER is unbearable... spinal tap, blood draws (not fun watching a baby getting it's veins poked!) and urinary catheter - you have to fight back tears! After 5 days in the NICU, she came home... but if you're gonna be stuck in the hospital - TCH is THE PLACE to be!! The great customer service, staff and perks offered is a whole separate blog...

This free picture slideshow generated with Smilebox

Leukocyte Adhesion Deficiency (LAD)

2010-06-05T15:36:00.001-05:00

LAD is a rare hereditary disease that is characterized by recurrent infection and delayed wound healing as a consequence of defective white blood cells. LAD can be corrected by Bone Marrow Transplant. Kevin and I are both carriers of this disease... there is a 25% chance any one of our children would be born with LAD.

It took close to 2 years to figure out that Joshua had LAD. From countless pediatrician visits (sometimes with treatments), so many antibiotics that his teeth are stained, tubes in his ears, several hospital admissions, misdiagnosed as Crohn's Disease, Cat Scratch Fever and Kawasaki Syndrome - it was bittersweet to finally learn the culprit of all his suffering. When Joshua was 5 months old, we were surprised with a gift from God - Aidan was born 9 months later... he was a perfect match to donate bone marrow to Joshua... we only needed to wait til Aidan reached 12 months old and 20 pounds. Joshua was admitted to the BMT Unit at Texas Children's Hospital on October 22, 2007 and discharged around Thanksgiving. We had so much to be thankful for... We were now a strong, healthy family of 5. There is nothing like spending all your days with 3 growing boys!!

3 years later...we were blessed with the only thing we didn't seem to have - a little girl - On January 19, 2010, God gave us Raylee Ann. At 16 weeks gestation, through amniocentesis, we found out Raylee would have LAD. But God reached down, wiped away our tears and said - don't worry, I have a solution... Our oldest son Kevin is a perfect bone marrow match to Raylee. So, here is her journey...

Make your own digital slideshow