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June 21
Good evening all...better yet...night.
We are at home now...we got home around 7pm tonight and the girls were so very happy to see us. Madison greeted me with tears rolling...arms up..and with a great big hug. Payton always has a big smile with a "mommmmmmeeeee"...and they both were so glad to see their mommy and daddy...as well as Deborah Lee.
Today seemed to go well. Deborah escaped her first chemo treatment with minimal side effects only spitting up a few times late yesterday evening. They gave her benedryl to help her relax last night to go to sleep and once asleep she slept until around 5am. She ate well today and was happy....smiling...and her new thing...screaming! The physical therapist came by to see her and gave us immobilizers for both of her legs to force her to stand and support her own body weight to increase her trunk stability. She has never stood on her feet...only when we braced her knees would she stand and she didn't like that...but when we placed the immobilizers on her and I stood her up..she smiled and squealed...and waved her little arms around like crazy! Because she never had a chance to develop or reach any milestones since being diagnosed at 4 months old..she has no baseline of how it is to stand on her feet....this will all have to be learned just as an infant learns...Deborah will learn. She will be put on vigorous physical therapy and occupational therapy to help her make gains starting next month.
They continued to give Deborah meds for nausea all day today and I will give them to her every 6 hours when awake throughout the next couple days. She is on an antibiotic 3 times weekly to prevent pneumonia (since her immune system will be low)...meds to prevent mouth sores...as well as IV meds to help her white cell counts to climb faster every day at home.
I am so very grateful that she has done so well so far...We go back on Thursday for different chemotherapy drug outpatient. She will also have kidney function tests first thing. Hopefully the introduction of this new drug to her system will not have any adverse reactions.
As far as the rest of the song I quoted in my last update....
“I sing through the rain and the sunshine"
"I trust Him whatever befall,
“I sing, for I cannot be silent; My Father planned it all”.
Thank you all for your emails and guest book entries...how sweet it is to know so many care and are praying. We thank God for all of you.
June 19th
Good afternoon all. Today has seemed to linger by....They started Deborah on IV fluids this morning into the afternoon. About 40 minutes ago, the nurse came in to give Deborah her pre-chemo meds to prevent nausea, vomiting, and bleeding of her bladder. As each infusion completed, the IV pump would ding and I felt my stomach knot up...my heart race...the tears almost rise to the surface each time it would ding because I knew that the next time the nurse came in, it would be to administer the chemo. As the last infusion completed....the tears overflowed and ran down my cheeks onto my shirt and that precious little Deborah looked at me with the biggest smile with her nose all crinkled up and my heart rejoiced because she is here....
Bart and I sat last night and looked back..reflected... at the last 7 months.....the day she was diagnosed...how we felt and how many tears were shed...then the first surgery...the second surgery and how God allowed the little bit of a tumor to remain in there, unable to be resected....and we wondered why....the doctors pushed for us to do that clinical trial knowing that her chance of survival was very slim with the treatment they 'said' would cure her....I remember having that nurse come in and tell me that she considered herself a Christian woman and felt she needed to tell me that it was okay to just take her home. That day, I wrote in a letter..."I just wish God would help me know what to do" before the nurse told me that....That day, Bart and I agreed to take her home and put her completely in God's Hands...We took her home and scan after scan the tumor didn't grow how they anticipated it would (That was God)....and in May, Dr. Leonard was able to get the "inoperable" brain tumor out....he said it was very easy and ready to be cut out...saying it was all laid out for him....(That was God)....and we learned that the doctors had given her 3 months to live...which has turned into 7 months now...(which was God)...She was not eligible for the study (which we learned she would not probably survive) but for a chemo plan that has been used and proven to work (in older kiddos) for 10 plus years....And we are here now. How can we say that God's Hand hasn't been placed on Deborah...He has kept her in His Care from the beginning. I look at the first spinal tap that had strange cells in it in January 2008 that the doctors had thought there was a process going on and that cancer cells were forming and how God took those cells, transformed them and our last spinal tap in May was negative for any cancer cells....
Our climb up this rocky mountain has only begun. We have stepped so carefully asking for God to guide us each step...Although this chemo isn't fool proof and it may not be her cure of brain cancer...we know...we know...God is in Control! Our life is His to Control and He has shown how we can place our trust in Him.
As the chemo gets infused into Deborah's body now as I type...she is over there cooing...laughing...and sitting so comfortably in her daddy's arms. Just as we feel when we sit at our Heavenly Father's feet and He puts His loving arms around us and lets us know that all will be okay...Just as Deborah feels her daddy's arms around her....His arms are around us.
My heart continues to pound...and my head feeling funny...but I do TRUST IN GOD to take me through...take us through....till the end.
As I held Deborah earlier the song ran through my mind...."I sing through the rain and the sunshine" and I have....and I did...and Deborah just gazed into my eyes and watched my mouth as I sang....then closing my eyes and asking God to take her...side effect free through this round of drugs....
She seems to be doing okay for the moment....Hopefully the meds did their job and she will continue on this path....no nausea...no vomiting...no bleeding...As the infusion completes..I hear the ding dong of the machine and my heart slows a bit....but I know....no matter what side effects...God has brought her this far and he will take her to the end...His promise? To never leave or forsake us! How wonderful is that!
She will continue to receive meds for nausea every 6 hours....meds to keep her bladder from bleeding...Hopefully she will rest well tonight (us too!)
Will update later.
June 17
Good evening all.
Nurse Practitioner called back regarding Deborah and she said that Chemo would indeed start on Thursday. They think that Deborah will have gotten significantly better by then with the cough. She also said that if Deborah should need tubes put in, they could definitely do that at any time during the chemotherapy.
Thursday at 9:30 a.m. we take Deborah in to be admitted for her Chemotherapy. She will remain in the hospital for atlease 2 days.
Good afternoon all. Doing quite well at home despite some hang ups with Deborah. She has developed a very bad cough accompanied by a very runny nose (may be the tail end of her virus?). I took her to see Dr. Zenker yesterday and her ears looked fine. She is cutting another tooth...so that could be part of her fussiness.
I spoke with Nurse Practioner (Oncology) yesterday and she said they want to start Deborah's Chemotherapy on Thursday. I called them this morning to make them aware of Deborah's cough and other symptoms and I am awaiting a call back. I also requested that and Ear, Nose and Throat Doctor review her case and see if tubes would be a good choice before starting Chemo. (She has had 3 ear infections in the past 3 months) I am sure they will say NO, but I wanted to ask. Not sure if they will start the chemo on Thursday given what is going on with Deborah. Will update as soon as I hear.
Chemo seems so overwhelming...seems as if my mind just keeps pushing that thought back...seemingly all so surreal even still. When they tell you what all chemo entails...it brings fear and worry. I have been trying to 'prep' our house for an immune-compromised situation as much as one can with a 3 and 4 year old with how fast I'm sure they can accumulate germs. I know that I have to step back....not lean on my own-self and bring all my burdens and cares to the Lord and just leave them there. This is not my fight...not Deborah's fight....but it is the Lord's battle...He holds it all in His Hands. When we fall down...He picks us right up, puts us back on our feet...dusts us off and holds our hand and if need be carries us through this long journey. I cannot sit and think of 18 months....that time-line weighs so heavily on us...we just take each day as it is.
Hope you all are doing well.
Will update later.
June 14th
Good afternoon all. Bart and I took the girls back to his mom's house and my mom called us and told us they were getting Deborah ready to be discharged. So, we got to the hospital and signed the discharge instructions and left. Deborah smiled and laughed as we left her room.
The girls were so very happy to see Deborah and they have had a good time playing today together again. Deborah is full of laughter, squeals and smiles...just is herself again. The doctors concluded she had something viral but assured us with any fever Deborah will get the same precautions were to be taken since she has the shunt and line.
We are unsure when the chemo will start...but they said in a few days. I'm not sure what that means...but we should find out on Monday I'm sure.
Deborah will be undergoing aggressive physical, occupational and speech therapy from the get-go with the Chemo. We don't want to lose any ground, but gain as much as we can to get her back on track developmental wise. Right now, she is sitting by herself (with a few tip-overs) and can push up nice and strong on her tummy and turn in circles. If she really wants something....she can scoot a little. She is a strong little one and has shown us that for sure.
God has a plan for her and knows just what she can handle. We will continue to believe that this chemo is the cure for her no matter what numbers doctors give us.
June 13th
Good evening all. Bart went to work this morning and after he got off work he went and got Madison and Payton from Gramma's house and took them to their favorite place to eat....Fazoli's....Payton has to take her own noodles but she is perfectly fine with that. I came home to see them all for the night and my mom stayed at the hospital with Deborah for the night while I am here. We will go back tomorrow morning.
Deborah has had a better day today. They have stopped giving her anything to suppress her fever and it has remained between 100.5 and 101.3. Her platelet count remains low so they are keeping her until it goes back up within normal limits. They believe that Deborah has had a virus but they have to treat any fever very seriously because she does have plastic in her head and heart that are foreign objects that love bacteria...so they have to rule out infection in those to be safe. We appreciate that.
She has had so very many doctors come in and I finally just told 2 residents "No, you cannot examine her...she is asleep and it is 10pm. I will gladly find you when she wakes up." Since then, no one has really came in other than her nurse and the neurosurgery residents and of course, Dr. Leonard.
She will probably be discharged late tomorrow or Sunday all depending on her numbers.
Chemotherapy will start after she recovers from this viral infection. She has been on 2 strong IV antibiotics and they need to let her system recover after completing those for a few days after she is fever free before they start the chemo.
The chemotherpy duration will be 18 months long. They expect her to do well...we are praying that she will not endure any hard side effects, lose hearing, or have any of those yucky side effects that she may. A lot to pray about....but nothing is too difficult for God to handle.
Will update tomorrow. Have a good night.
June 12th
Good evening to all.
We spent last night and the day here at Children's and we will be here tonight as well. Tomorrow morning they will draw new labs to check for other types of infection. Still awaiting some results. They will keep her until she is completely fever free.
Dr. Ruben came by today and had so very much to say. At first glance at the papers for the chemo regimen they gave us....tears rolled down my cheeks as I felt so very overwhelmed...She does not qualify for the 6 month study so she will go on a baby-pog (Pediatrics Oncology Group) regimen and that will last for 18 months. Dr. Ruben told us that he agreed on us taking Deborah home 6 months ago when we did. He explained that the clinical trial would NOT be a good choice in treatment (the first we heard of that) since they have never used this regimen. They have NO success stories for the 6 month trial..but the 18 month regimen has been used on kids (over the age of 3) for 10+ years. This regimen they expect for her to be cured...They said that 50% of the babies on this one survive and this is the cure...30% of the babies this chemo gets them to the point where they can have radiation after 3 years of age...and 20% this chemo does not help at all. They believe Deborah would be in the 50% category where this would cure her.
We have so much to learn about this stuff...chemo in general is scary for us...but it seems they take all the precautions so she will have the least side effects possible. So, the chemotherapy will start after they find the reason for the fever and she gets better completely from the fever.
She has had such a very high fever all day...up to 104 at one point...but her fever is down and she is acting a little more like herself.
All the more...we must just sit tight, take it each moment by moment and trust God that He can and will bring us through this...all of us.
Thank you for your continued prayers, thoughts and guest book entries...it is so very encouraging for us!
Have a good night.
June 12, 2008
Good morning all. We are currently at Children's Hospital with Deborah. She was admitted last night for a high fever and drainage from her Broviac line. We spent 5 hours in the ER and at 4am we got up to the floor to stay. At the current time, her preliminary labs have come back fine but her fever continues to climb up to 104 degrees with Motrin and Tylenol. They will keep her tonight most likely and re-evaluate labs as needed. They are giving her 2 IV antibiotics and have taken a sample of her spinal fluid to rule out infection there. We still will see Oncology today but they will come to us since Deborah is on contact precaution due to MRSA and unexplained high fever. If the tylenol and motrin continue to not take her fever down they will bring in a cooling blanket and fans.
Will keep the website updated as much as I can today as new results come in.
June 11
Good afternoon all.
We have had a busy day, once again. Deborah slept all night in her own bed...I did too! She was pretty fussy at the beginning of the day, but with Motrin and Tylenol, she is now up and at 'em.
We got our big box of supplies for Deborah last night to care for her central line and this morning we all went to Target to get a big drawer organizer for all the things so we knew what we have and where it is. I labeled all the drawers and the nurse when she came was impressed at how easily she could find everything she needed. Deborah got her dressing changed on her line and she fought us as hard as she could. I had to hold her little arms up over her head and her legs down so the nurse could get to her bandages...she was as mad as a hornet...But did take a very good nap when the nurse left. At that time, I set up the slip-n-slide for the girls and they played for a good 2 hours and I just laid in my chair...in the sun...and it was relaxing to hear Madison and Payton talking and having fun....They are playing now with dollies and Payton just said "my babies are allergic to mik" and Madison says..."Well, all the cakes and cookies have milk in them"....Payton had no response...Ha! I thought that was funny since Payton herself has a milk allergy and it sounds like her baby dolls do too.
All seems to be well today. She has played pat-a-cake and the cutest thing is she actually "rolls" it and her little arms just fly around and then she throws her arms up (when you throw it in the oven for baby and me, you know?)....with the biggest smile and her little nose crinkles up. I'm glad to see her smile! I think we all at some point have taken for granted healthy little ones and realized it when something like this happens and the health of your child (or someone you know) is compromised.
We go tomorrow morning to see Oncology....and well, I'm nervous. But I just try my hardest to "Be Still" and "Know" that God has it all planned out.
I have added some pictures to the gallery....check them out!
Have a good night!
June 10, 2008
It is late and we are at home and settled with all 3 girls in bed sleeping soundly. We got home about 7pm tonight and it is so good to be home.
Deborah had a rough night...she seemingly was in more pain this time around than she was with the last brain surgery. She does have quite a few things going on between the shunt and the central line. She had a lot of swelling in her right foot and lower leg and they are still unsure why it was swollen. They did an ultrasound this morning to look for a blood clot, but everything turned out well with the ultrasound. She had a better day than she had last night. She woke up 4 times through the night and needed something for pain and then her day got better as time went on.
She has the incision on her head where they inserted the shunt and one on her belly which they put the drain into the abdominal cavity so the spinal fluid would then be absorbed into the body. She also has 2 incisions around her left shoulder and collar bone for the central line. So, between her head, shoulder and belly she has 4 incisions....I'd be sore too!
This evening at supper she just laughed and talked and sounded like Deborah. No crying or wincing...just happy girl!
All of her medical supplies were delivered tonight for us to care, clean and flush her central line. A home nurse will come tomorrow to teach us how to do all that. A big box of supplies for such a little girl!
She has been through quite a bit in the past 2 weeks....2 big surgeries...but still has a smile to show for it all. What a tough little one.
God knew she had to be laid back, happy and strong for all she would go through.
We will go to see Oncology on Thursday and learn more about what chemotherapy regimen she will get. That will tenatively start on Monday, June 16th.
So, we are hanging in here....
We enjoy reading all the guest book entries as they are so very encouraging and touching to see how many of you care and are praying for our family.
Amidst all the rain, thunder and lightening....God will hold us close until the storm passes by...
Good night.
June 9, 2008
Good evening to all.
We arrived at Children't this morning only to find that, as usual, things were running behind. Deborah was very, very good for not being able to eat anything. Finally at 2pm, they took her back to the OR. Dr. Leonard put the shunt in (on the right side) and the general surgeon put in a Broviac Line (the central line for the chemo) on the left side. After about 2 hours in the OR, Deborah was in recovery...very upset! They gave her some more Morphine and she konked out and slept for awhile. We are up on the 12th floor and here for the night. She is doing well....she seems to be in quite a bit of pain...but doing well. She has eaten with no problems and seems to be doing quite well considering what all she has been through today.
She does have some significant swelling in her right foot and lower leg...which we are unsure of why. Doesn't seem to bother her a whole lot, but they are keeping an eye on it closely since one of the rare things she could have is a blood clot.
Her hair....well, half of what was left is gone....so, she will get another hair cut tonight when she wakes up and we will give her a good summer haircut of a buzz. We have a bandana to match every outfit!
Today was a good day....long day, but a good one. Everything seemed to take longer...have to wait longer...so tomorrow pending any complications we will come home.
Hope this finds all of you well.
GOD IS GOOD!
June 5, 2008
Good morning to all. I just got back from Children's with Deborah. She wasn't too thrilled to be back there...
Dr. Leonard will be placing a shunt in Deborah on Monday. This will require her to be in the hospital for the night to go home on Tuesday sometime. She has acquired a lot of fluid at her incision which is evidence that the hydrocephalus is present.
You know, my mom wrote me and it said "God never promises an easy journey, but He promised to never leave us" That is so very true.
She will go in at 9:20am on Monday morning for a CT scan before surgery and the surgery will be sometime that day following the CT scan.
Have a great day!
June 3, 2008
As I sit at the keyboard so very heavy-hearted...wondering about this and that. So very much has been placed on our shoulders, but not to be carried alone. We feel so very often that God is with us and that we have peace with things...but sometimes you just get wham-blasted with emotion and feelings in thinking about tomorrow, next week, next month...the future in general.
Madison and Payton have been so very good but sometimes you can just see in their little eyes that they too feel some sort of pain...maybe not knowing what the feeling is...but Payton always will stop riding her bike mid-circle around the garage to get off and give Deborah a very gentle hug and tell her "I love you, Deborah"....sometimes Madison will just softly touch Deborah's arm while she is sleeping and just gaze at her...I'm sure there are many feelings and emotions whirling around in their little minds just as they are in mine...I know that they are worried about Deborah just because they want to go with me to take Deborah to Children's on Thursday instead of stay with great-grandma asking if great-grandma can go with us. They always want Deborah Lee right by them...If Deborah is lying in the floor, they are mere inches away from her just wallering around with her. So much is in store for them to deal with, but they have that child-like faith that we all strive for. They share with me in saying "God watches over Deborah every time she has to stay at Children's"... So much can be learned from them, I suppose.
I sometimes feel like typing this is therapy for me.....even though I may not know many of you that read this....but it makes me put my faith down on paper...It makes me KNOW and not DOUBT that God is right here, because I KNOW that. When so very many doubts arise and you just feel like you can't take any more.....there is that sudden peace that is given when I sit down and actually think about the things I KNOW. My doubts and fears rest silently when I look at that white screen...as I type what I know is the truth.
You know, if we all dwell on the what if's in life...my, how horrible that would make life. There are so very many what if's with Deborah that I couldn't even begin to write them down...but instead I try and focus on WHAT IS TRUE and WHAT IS REAL. The truth is....Deborah is in the hands of the Almighty God...He is everywhere...knows everything...Deborah's times are in His Hands. The real part of all this is this.....My times are in his hands...He knows my heart and that is how I can rest in the fact that THIS WILL ALL BE ALRIGHT....Romans 8:28 says "And we know that all things work together for good to them that love God, to them who are the called according to His purpose". Right now, God's Will is for us to be right where we are....and His Light will shine through us to all of you who read this. May each of your lives be touched by the Light that shines in our darkness.
Hope this wasn't too long...Just what was on my heart. Good night. The update for today is below this dated for today as well.
6-3-2008
Good evening all. I spoke with the Oncology Nurse Practitioner this morning and the pathology results were the same...Grade 4 Desmoplastic Medulloblastoma...same as it was before. Desmoplastic just means this lesion was a result of the cancer spreading.
Deborah has had increased fluid buildup around her incision so I will take her in Thursday morning to see Dr. Leonard and probably have a quick scan to look at the ventricles. We will, of course, go sooner if needed. He called me this afternoon after I had spoken with his nurse about the swelling. I thought it was nice of him to call personally. He said, "I hear our girl has some swelling" and wasn't really happy about it since she was doing so well with the swelling. The fluid always seems to build up there because the first surgery, they had to cut a hole in her skull and take out part of the first two cervical vertebrae. So, we will see what that holds.
It sounds like they want for Deborah to start the chemo on June 16th....pending her healing well. If they have to place a shunt, it would be later I would think. Still waiting to hear if she qualifies for the Clinical Trial...if she does it will be 6 months of treatment. If she does not qualify, then she will undergo 15 months of chemotherapy. So, still awaiting news on that. I will know for sure on the 12th when we go to see the doctors.
That is all I know for the present time. Hope you all have a great night!
6/2/2008
Good afternoon all. We are at home with Deborah Lee to stay. How nice it is to have our family back together. The girls were very excited to see Deborah this morning.
A lot of questions have arised about Deborah Lee and I will try to answer them as best as I can. I called Debra (Oncology Nurse Practitioner) this morning and here is the answers she gave me.
Although all of the tumors were resected, Deborah still has cancer. The microscopic cancer cells are still there. The chemotherapy's job is to try and kill off those cells. Since she has grade 4 medulloblastoma, chemo is necessary because of its severity. The chemotherapy could not help, but they are hoping if they give her the high dose chemotherapy with the 3 bone marrow transplants that it will do its job. She is not in remission. She will have to have continual MRI scans for the rest of her life.
If anyone has questions, feel free to email me at bartonolney@sbcglobal.net and I will try and answer any questions you have.
We go to see Dr. Reuben (neuro-oncology) who specializes in brain cancer and Dr. leonard on the 12th and will learn more then about the chemo and the plan for Deborah.
Deborah is very happy and very verbal always squealing in joy. Madison and Payton are just delighted to have her back home.
Our prayer is this....the chemo would do its job...that the side effects would be minimal if not none....and that she would have no infections during the chemo that would jeapordize her life...
She will be in the hospital when they administer the chemo agents for 2-5 days per round of chemo (which is 1 month) and then when they do the bone marrow transplants, she will be in the hospital for atleast 1 month. Months 1-3 would be chemo and months 4-6 would be the transplants.
The treatment plan may change a little if she is not eligible for the Phase III Clinical Trial...but not by much. We will find out more on the 12th if not sooner.
Have a great day!
6/1/08
Good afternoon all. We had a nice day away from the hospital once again. We got the release about 9am and went home, did a quick change and went to church. Deborah got many greetings of tears, joy and just a lot were overwhelmed that she was doing so well only 5 days out of surgery. She sure is a happy little one. She showed off her new hair do accented with a yellow bow.
We are awaiting Oncology to give us some sort of news regarding treatment. Dr. Leonard gave us an article when she was first diagnosed about high risk medulloblastoma and treatment. She is in the top bracket for survival rates (5 year survival rate) and that is with the treatment she would have between a 48% and 76% survival rate of the cancer.
Some have asked if she still has cancer and Yes, she does still have grade 4 medulloblastoma. (Grade 4 being the worst) We just have a complete resection of the tumors. Does that make sense?
We are also awaiting Pathology as to what type of brain tumor was left...I believe it is a piece of the last tumor he only got part of 6 months ago, so it should be medulloblastoma just as the other tumors.
We should know more tomorrow. Hope you all have a great day. There are some additional pictures in the gallery, so look!
5/30/08 Good afternoon all. We have had a great day!
This morning we gave Deborah a hair cut. When they cut her hair for the stealth MRI to put the stickers on her head....they were not kind....so, this morning we shaved most of her hair off except for the top. I had to leave something to put a curl in or a bow in, but she has quite the hair now...She absolutely hated the clippers and cried the whole time...but her hair is much better now. It will all grow in together.
Our nurse came in and said that we could take Deborah out for the day and come back this evening..so we didn't waste any time and left right away. Deborah waved her hands and squealed as we left the hospital...so cute...it was like it was her way of saying Yes! I'm outta here!
We surprised Gramma Lee as she was expecting my mom to come over and get the girls and we showed up with Deborah instead and she was so very surprised. Tears accompanied the greeting we got as this was the first time she had seen Deborah since Monday night.
We then went over to my mom's house where my sister and Morgan, Mackenzie and Caleb as well as my grandma were there. I tied a red bandana around Deborah's head so it didn't sunburn so she could go outside where all the action was.
It has been a good day. The feeling was so very good to leave the hospital with Deborah...as on Tuesday we didn't know what our future held and we have been so blessed with how well she is doing. We thank God for every moment.
So, we are off to see Deborah's friend Kristin Robinson and then to take Madison and Payton back to Gramma's house. the plan seems to be for us to go home on Monday. We are awaiting news from Oncology and Speech Therapy wants to come evaluate Deborah's feeding and make sure she doesn't have any issues with aspiration. So, hopefully on Monday we will come home!
Have a good rest of your day. I will post pictures tonight when I get back to the hospital of our day.
5/30/08
Last night Deborah slept from 8:30 until 5:30 this morning and has not had any pain medication since yesterday evening at 6pm. Not even Tylenol. She has been so very happy today with much energy and smiles all day. We got to go down the hall to Physical Therapy today and Deborah was so excited to get out of her room...I was too! She played and worked so very hard on a mat in the play room. She was fitted for a neoprene vest that will assist her in gaining strength in her core. The therapist seemed to think that her deficits are mainly from being diagnosed at 4 months and not even having a chance to develop since she had those 2 brain surgeries back to back She explained that most kids are diagnosed with brain tumors around 18 months and have already hit their developmental milestones.. Deborah was the perfect little patient for the therapist smiling and laughing. Deborah will be fitted for a stander (will assist her in weight bearing through her legs) in the near future. Deborah was also evaluated for speech therapy and actually is advanced in her speech and language development and the therapist commented on how social Deborah was! She was very much impressed by Deborah. (As she should be, right?)
Dr. Hayashi stopped by this afternoon and was so very surprised at how well Deborah was doing. Saying, "she looks so good" time and time again. He explained that they are waiting to hear from Administration of the Clinical Trial Board (for lack of better words) to see if Deborah qualifies for the research study chemo plan. Deborah held tightly onto his finger and looked in his eyes and smiled. Dr. Hayashi seemed so different in the presence of Deborah. He is seemingly more in tune to her as a baby than just that of a patient. Make sense?
We are constantly amazed at what God has done for Deborah. How she can be 3 days out of brain surgery and not be taking any pain medicine...how she can sit up like she never had brain surgery and act so very happy...not fussy...just all smiles, laughes and squeals.
Dr. Leonard happened to come just as Bart and I left for supper..........what timing! I did speak with him briefly over the phone and he said to plan on going home possibly on Monday. He wants to watch her closely over the weekend for any signs of increased pressure of the brain.
I took off her bandage over her incision today....her poor haircut was not done by a salon, that's for sure....but by a neurosurgeon who has much more on his mind that cutting her hair nice and neat like I requested. Ha! So, she will be getting her hair cut by her daddy ... I will take pictures and load them!
She is sleeping soundly right now and looks so very peaceful! We thank God we have her. She is amazing every moment of every day. Just like Payton says....Mom, it's gonna be amazing.
We miss Madison and Payton something fierce! My mom is bringing them up tomorrow to see Deborah. They are so very happy staying with Gramma Lee.
I will be loading pictures tonight! Have a good night all!
5/29/08
Good morning all. Just a quick update. Deborah Lee is doing very well. We walked in her room this morning and she was playing with her IV tubing and watching tv. As happy as could be. I spoke to her and she reached for me. When I picked her up, she did not cry in pain and was gleaming to see us. She played with her rattles, I gave her a little bath and she has eaten and my grandma sits holding her right now.
Last night, Dr. Leonard popped in and said the MRI confirmed that he got all the tumor out. We are waiting to see the films today some time. Oncology is coming today to talk with us today. Dr. Leonard also said she will be watched closely regarding the shunt. Said if she gets fussy or any seeping from her incision or any pseudomeningocele (fluid pockets) develop then the shunt will be placed.
We are waiting, waiting.....We thank God that she is doing so very well. It truly is God.
Will update later.
5/28/08
Good morning to all. We got back over from the hotel this morning around 7am to see Deborah awake and even had a little clip in her hair. My mom and grandma were here to see Deborah when we arrived.
The nurse said Deborah had a good night. I washed her hair this morning and Deborah seemed to like that. She picked out the purple clip over the blue one. She is playing with toys...Sophie is her favorite (the giraffe) but overall she preferred jewelry. She has eaten okay and will go to MRI tonight around 6 or 7pm. We should get results shortly there after. MRI's normally take about an hour...since she is so awake they will have to sedate her. She is still on the Morphine for pain but seems to be much more alert today.
We are so very pleased to see her awake and so very alive. She has been on a mission to get her feet out and is very curious of all the iv's and tubes.
I have uploaded some pictures of yesterday before surgery and a few from after surgery.
Have a good day!
5/27/08
Good evening all. This comes late, but I'm sure you all can imagine our day has been so very full!
Deborah went into surgery at 8:45 this morning. The intraoperative MRI was not used but she did have a Stealth MRI with the little stickers on her head first and then after that went into surgery straight from that. They shaved little circles in her little hair and prepped the back of her head by shaving it for the surgery.
Deborah made sure she looked every doctor right in the eyes as they talked to her....I could see the doctors just melt in her gaze. Her first look at Dr. Leonard was a trusting look as he walked past the room and poked his head in to say hi. As he gathered his things my father asked him if he minded if we prayed for him. Graciously he said yes and my dad prayed that God would lead his hands. When I looked up, Dr. Leonard looked as if he had tears in his eyes. I think he has really gotten attached to Deborah in the past 6 months...we were there every month and Deborah always would just smile for him and look at him with adoration as he played with her and they would just look at each other and she would just smile!
After almost 2 hours in the operating room they started the procedure. It always takes awhile to get all her lines in. Every hour and a half, the nurse would call for an update. Still working would normally be the update. Bart happened to step out of the room when Dr. Leonard came walking in....my heart seemingly stopped and I felt a lump in my throat...with a thumbs up he said it was good....he is sure he got all the tumor out and he would prove it tomorrow with a MRI. He went on to explain that it was all laid out for him....the tumor came out encapsuled and only had to take out a few vessels...the tumor came right out...all of it. Dr. Leonard and I went to find Bart and he explained the same thing to Bart. As tears rolled down our cheeks, we KNEW that God was there in that OR...God guided his hands...God pulled that tumor off that vessel in her brain...God miraculously allowed Dr. Leonard to perform a surgery without any complications...a surgery that was so very risky. To God be the Glory! I have fervently prayed that God would take that tumor and allow Dr. Leonard to get it all....And God answered.
We are now in the PICU room 5....Deborah had some breathing difficulty for the first hour and was watched carefully. They increased her Morphine to a max dose to help relieve her pain...she did have some vomiting after drinking, so they included some Zofran for nausea and since then, she has rested peacefully only stirring when the nurses come in to poke and prod...then she will bat her arms at them...How sweet to see her move all her arms and legs...How sweet to see her eyes focus on me...To see her cry...and to feel her tiny hand grasp ours. What a day!
Dr. Leonard came in and explained to us that when he got into her brain that she did in fact have evidence of hydrocephalus and that we would probably be getting a shunt put in..in the next few days. He said tomorrow he would show us the proof that he did in fact, get all the tumor out.
So, tomorrow holds more question and answer time and will update you all and load some pictures tomorrow.
We thank you all so very much for all your prayers today. So many of you have been such a big part of her success today! Please remember Madison & Payton in prayer as they are away from mommy and daddy but in good hands at Grandma Lee's.
God does answer prayer.
5/26/08 Hello all.
Just checking in mostly. Nothing new...
Hope everyone is having a good Memorial Day with your family.
We went to the parade this morning for Alton and the girls had a great time. Even Deborah Lee waved her flag as the cars passed by. Madison and Payton were so excited as they remembered last year going to the parade. I have added a few pictures to the Kodak Gallery Link from the parade.
Lots floods our minds as tomorrow holds a very important day for Deborah. Dr. Leonard will be attempting to get all the last tumor out. I often wonder how doctors can operate on such a tiny head knowing how precarious the situation is....I wonder...do his hands shake? Is he nervous? And I don't think so. God has placed Dr. Leonard in our paths as he has been so good with me and all my questions....The Social Worker at Children's told us that she doesn't really have to deal with Dr. Leonard's patient's families like the other neurosurgeons and that all the families under his care are very well informed. That tells me that God has given us a very understanding, patient doctor and we are so grateful for that.
I have many people every day ask me how I do it...how we do it...How do you deal with a child with cancer? I answer...I couldn't do it alone. "I can do all things through Christ who strengthens me" the Bible says....How true is that! Some days we hit the dark and gloomy side of it all...wondering how it will all turn out...wondering how this will be used...but then God gives us a new morning...with a new sunrise...a new day. Deborah Lee is the tiniest of vessel that God is using in her circumstance to touch so very many people...It is only with trying to lean on my own self that I get frustrated and worn...then I just turn to Him and his grace is sufficient. That is how I make it through my days.
So many questions come to mind in all of this...but I must just sit back and take it moment by moment before I take it day by day....because the day to day things can get stressful and I step back and take it one step at a time.
Thank you all for your guestbook entries...how much it encourages us to know all of you are holding us up. We thank God for all of you.
Will send an update after tomorrow. If anyone ever wants to email me at anytime personally, please feel free to. I check the website and my email everyday. My email is bartonolney@sbcglobal.net
Have a great day!
5/23/08 Good afternoon all.
Payton came out of her surgery to get her tubes put in successfully!
Also, just wanted to let you all know that Deborah's surgery is scheduled for first thing Tuesday morning at 7:15am. We have to be over there at 6am to get her admitted.
Thank you all so very much for your guest book entries as they are so much of an encouragement to us!
Have a great day!
5/20/08 Good afternoon all.
We have decided to go ahead with the third surgery to try and get all of the tumor out. Her surgery will be on Tuesday, May 27th. We are not sure of the time as of yet. They will call us and let us know by the end of the week.
So many thoughts ran across our minds when we were discussing which way to go. Neither way would be our choice. We are just taking this all one step at a time. Right now, the only thing we can think of is the next step and that is surgery. The surgery brings so many risks....We discussed the risk of her not making it out of surgery and we both came to the conclusion that would be okay...We truly believe that God's Will will be shown to us. There is nothing better than for her to be free of all pain, free of the cancer that plagues her now...what could be better for her than to be in God's Arms eternally? The Bible says...."safe in the arms of God"....
There is nothing like these decisions we are faced with....But we do KNOW beyond a shadow of a doubt that God is with us, God is with her...no matter what we choose. His Hand will be on her as Dr. Leonard is performing surgery...right there guiding his hands...
With all that said...please pray for Dr. Leonard as on Tuesday he will go back in and try to get the remaining tumor out. Pray she will heal quickly with no adverse affects or damage from surgery and that she will regain her strength quickly. Pray for Madison and Payton as we tell them about Deborah's surgery once again and that they adjust well while we are at the hospital.
Payton was singing last night in the bathtub....the song was...."My God is so BIG, so strong and so mighty...There's nothing my God cannot do...for you!" She sang it right! That is the song that has stuck in my mind from the very beginning....As for the first time I heard that Deborah had brain cancer and was on my way to pick up Bart from Acropolis 6 months ago...I turned on the car and that same song played as soon as the car started.....It is so true. There is nothing He cannot do...He is all powerful...all knowing...all wise.
5/16/08: Good evening to all.
We wanted to let you all know what Dr. Hayashi and Dr. Leonard said today at our conference.
Dr. Leonard was in surgery, so our conference started with Dr. Hayashi. He basically told us the same thing we heard almost 6 months ago. He explained that Deborah was in a high risk category due to her age being under 3 years old. We are looking at the same Phase Three clinical trial that was on the table before. She is one of a rare case and there is no data to give a quantified "odds" or success cases. The nature of her disease is called desmoplastic (the two different distinct lesions) indicates a lesser chance of survival. He said that her being older does not mean that she will tolerate the chemo easier or differently and does not enhance her chances of surviving. He said there will be side effects of the chemo. He said it would be a very rough 6 months of treatment. She would have the 3 months of intense chemo followed by 3 months of a stem cell rescue to rebuild the cells that were destroyed by the chemo. He said the last 3 months would be the hardest as far as side effects go. He also said that different kids react differently to the chemo. Some do really well and it seems like some have problems throughout the entire treatment. They gave us the papers for the research trial and he then left.
Dr. Leonard came in at around 4:30 and explained that she does have a very bad disease. He said that the tumor that is left is "adhered" to the main vessel in the brain. I asked him how he gets it off and he replied..."very carefully". He further explained that they have tools that allow him to shave off small slivers at a time to decrease the chances of damaging the vessel. He said to her advantage she is larger....it is easier to operate on a bigger head and that she has a larger blood volume which gives him slightly more time to react in the event of the vessel rupturing during surgery. He was unsure if they had the proper positioning equipment to use with the intraoperative MRI since she was so little and the position she has to be in during surgery in order for him to gain the position required to operate effectively. This MRI was actually developed to use on adults. He said that posterior fossa tumors are the hardest to get to and her being so little makes it even more difficult.
We explained to him that it was not the surgery that was so frightening. Don't get me wrong, the surgery is very frightening, however, the chemotherapy is was scares the daylights out of us. We explained that we would go to chemotherpy ONLY if the surgery was a success and he did remove all the existing tumor. If she has bulky disease left in there, her chances lower significantly. He said if that is what we would offer him, he would do it. He is tenatively looking at his surgery schedule for May 26 or May 27. He wanted to do it next week, however, Payton gets tubes put back in her ears on the 23rd so he said this way we could get Payton all taken care of and get her up and running before Deborah would be admitted for surgery.
My, my...so many thoughts, so many decisions we are faced with....But in the end....
GOD KNOWS....
even though the doctors don't know what will happen and cannot predict...God knows...
Our time is in His Hands.
5/14/08: Good afternoon
The results are in. Deborah's spinal tap was negative for cancer cells. We will be going to Children's for a conference with Dr. Leonard and Dr. Hayashi as well as both of their Nurse Practitioners on Friday at 2:15pm. They will then go over the MRI films with us and show us exactly what we are faced with tumor-wise. They will also talk about surgery, for a third time, to try and remove all the tumor as well as a treatment plan for Chemotherapy. All of our questions will try to be answered as we have so very many.
The surgery is a very big risk for Deborah. The tumor is around the main vessels in the brain and there is a very high risk for damage to those vessels. In the case of them damaging them, she could bleed out immediately. Risk of transfusions are always there and brain damage. The chemo we will learn a lot about it. Dr. Hayashi was working on a treatment plan for her based on a complete resection.
We have been on seat's edge since Monday morning. Dr. Leonard had said early week and he would let us know results. Monday came and went....Tuesday came and went. This morning I called from the gym and to my surprise Tammy told me the results and said she was about to call me. It took everything in me to NOT call a few times a day and say....now? results now? But I held tight until this morning. I didn't know how to take the news of her LP being negative......at this point any news isn't really Good News....but the news could have been worse. All I can do is say, ok now...just look at what God has done. He has given us the gift of time. They didn't think she would last this long, only giving her 3 months when she was first diagnosed. God has blessed us by her such sweet disposition even now....her disposition has always been sweet. God has blessed us by keeping that tumor 'under wraps' and not letting it grow or spread like they had predicted....and God has worked a miracle in that itself. It is like God is laying the ground work for us....saying, Now here is the next step....here is the next choice. Sometimes I can almost hear him say 'Be Still and Know I'm God' in my heart. Sometimes there is such a strong sense of Peace....sometimes there is just anguish and despair, but always followed by peace. We know that God has a plan for Deborah. She has reached so very many people in so many different ways. He is always with us even in the valleys....He's there, holding our hands and hearts...saying 'It will be okay'.
What Friday holds, I'm not sure....what our choice will be weighs on so very much....but we have prayed so hard and fervently about this decision that we know that whatever choice we make has been brought before God. He says to bring our burdens to the Lord and leave them there....We have....and He will work everything out.
Will email after Friday's conference....
Hope this finds all well.
Thanks for your prayers and support! We are so very grateful for all who receive this in one way or another.
Bart and Amy
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